Please pray for our daughter Valerie Grace (10
months).
We will be taking Valerie Grace in for an MRI on
Monday to rule out a brain tumor. Her left eye
has been moving back and forth (kind of jiggling)
for the last couple of days.
We found out today that Valerie Grace has a large
brain tumor. There are some major blood vessels
that are running through it, so they cannot
remove the whole thing.
Please pray for healing and for her to not be in
pain. Pray for Craig and I and for the Brooke,
Courtney, and Natalie Joy.
Valerie will go in for an MRI of her spine tomorrow and
a spinal tap. We will also take her to an ophthalmologist Please continue
to pray for healing. She is happy, eating well, and enjoying family.
The MRI of Valerie's spine came back clean. My
parents are driving down from NC on Friday (which
will be a delight for all of us). It looks like
she will be having surgery on Monday. Please
continue to pray for God's healing and thank Him
for showing us such grace and so much about what
being a child of God is all about. We have been
humbled before the Him.
We found out today that the spinal tap did not
show anything, so she is scheduled for surgery at
Shands on Monday at 8am. I spoke with one of the
doctors today who felt there is a chance they
might be able to remove the whole tumor.
Valerie Grace stood up today without holding on
to anything for the first time. She is so happy!
The girls had a "we love Valerie" party today.
They made decorations and cupcakes (Valerie had
cereal instead of cupcakes- but did not seem to
mind). We are so thankful for all of your
prayers! We are growing closer to God each day.
The other girls are doing really well too. We are
continuing to do our Bible study every morning.
This morning it was about how God might not
answer our prayers the way we expect. The girls
really were at peace with that and Brooke told
Craig the other day "if Valerie does die, she
will get to go and be with Jesus!". We all
continue to pray for her healing and we are
enjoying every minute with her and each other.
My parents are driving down from NC to stay for a
week.
Valerie will be back in the O.R. for 3-5 hours
(they are thinking), so please keep her in your
prayers!
So far, Celeste has been doing all the updating,
so I thought I ought to let you all know what was
on my heart too. (By the way, this is Craig).
God has been so abundantly merciful to us through
all of this. He has shown us so many things
already, and we have only started to walk down
this path. He has taught us a great deal of
humility. He has reminded me how to pray. He has
revealed his grace to us. And His presence has
surrounded us so that we neither fear nor grieve.
During the first 24 hours after the diagnosis, I
went into a pretty nasty depression. Now I've
been depressed before - when Jenni died, and
throughout most of high school - but this was a
different experience. During those times I took
some comfort in knowing logically that there was
an end to it, that some day it would feel better.
But for some reason, in this I couldn't see an
end. I couldn't imagine anything getting better.
I wasn't angry or bitter. I was just drowning in
sorrow. I couldn't remember what it felt like to
be happy and I had to ask Celeste what kinds of
things I used to do with the girls to have fun
with them, because I honestly couldn't remember.
This depression broke when the elders came and
prayed for Valerie Tuesday night. But I think God
was letting me walk through that time to see what
it feels like for someone who does not know Him
to walk through tragedies. It gave me a new
appreciation for being called one of His, and a
new level of sympathy for those who do not know
Him personally.
We are fully at peace right now. Patsy Cook
emailed us some prayers that people were praying
for us. When she asked if she could send them, I
said yes to be polite, but I've never thought
much of written prayers, they usually seem stiff
or theatrical. But I can't tell you how much they
meant to me. I even forwarded one of them for
someone else to pray for me. Thank you Patsy.
(One of the lessons I have learned is how
strengthening it can be to know exactly what is
being prayed for you. This is a practice I will
be adopting in the future.) This is also the
reason for this update. God has told me through
so many of His children to pray boldly. He has
taught me in the past to learn from Jacob, and to
wrestle with Him and not let go until He blesses
me. Therefore, I wrote the following prayer after
Jehosaphat's prayer in 2 Chronicles 20. Please
pray it boldly with me and stand in the assembly
with me as we wait on Him.
I prayed to God:
O Lord God Almighty in Heaven,
Are you not the God who created the whole Earth
and all that is in it?
Are you not the God who has redeemed us and
called us your own children?
You rule over all of mankind and all of creation.
We trust in you and we know that your promises
are true and that you are trustworthy and good.
There is nothing that escapes your sight and
there is nothing that can stand against you.
You are our fortress, our strength, our peace,
and our healer.
But look Lord, at my situation, this tumor which
has attacked my child who is called be your Name
- it has been rebuked in the Name of Jesus, yet
it remains. It has defied the command spoken in
your Name. Will you not judge it, Almighty
Father? For we have no power against this enemy,
nor do we know what to do, but our trust is in
you and you alone. And we wait to see what good
thing you will do.
And the Lord answered me:
Listen all you who are called by my name, and
hear what the Lord God Almighty has to say. Do
not be afraid or dismayed because of this enemy
that stands before you, for this battle is not
yours but mine. Stand firm and watch. You will
not have to fight this battle, I have heard the
prayers of the saints and they are a fragrant
offering before me. Watch and see the salvation
that the Lord will bring, this battle is mine and I am with you.
__________________________________________________
2-6-05
Please keep Valerie Grace in your prayers as she
will go in for surgery Monday the 7th (tomorrow).
They expect her to go back at 8am and it could
take upto 5 hours. If anyone would like to come
and pray with us, we would love that. The flu and
chicken pox are going around right now in
Gainesville. We do ask that if you have been
around anyone that has either, that you not come.
Both are contagious several days before symptoms
appear and none of us were able to get the flu
vaccine this year and Valerie has not had the
chicken pox vaccine.
Please continue to pray for healing for little
Valerie Grace. She said "duck" for the first time
last night and played ball with Craig for about 2
minutes.
Here are some pictures of Valerie Grace. The ones
with Craig and Natalie were taken this week.
Love,
Celeste
After
Surgery - at the hospital
2-7-05
We just got word from the doctors (not 5 minutes ago) that
the tumor in Valerie Grace was a JPA (Juvenile Pilocytic Astrocytoma).
This is the best possible thing it could possibly be. They were able to
remove almost all of it surgically and will not likely have to do anything
else. Valerie Grace is awake and crying and God has delivered her.
To God be the Glory!
I thank you all for your prayers, and be assured
that the Almighty heard them and answered us. We
will continue to keep you updated.
In the mean time, I would like to ask for your prayers for
a little boy named Ti whose family shared the waiting room with us. He
has had bacterial meningitis for several weeks and they are having a hard
time stabilizing his condition. The family are believers and could certainly
use your prayers.
We just talked to Dr. Pincus, who performed the
surgery. There was still a good amount of tumor
that could not be removed from her right optic
nerve and her left optic nerve was destroyed in
the surgery. Amy said she is looking good and
crawling around in the crib. We just pray now for
her to recover quickly so that she can go home
soon. There are often some complications from
swelling, but that is considered quite normal and
not a big concern.
Although yesterday's surgery went fairly well,
last night was pretty bad. Celeste was alone for
most of the time, although Amy Mantel did come
stay and sit with her for several hours. Valerie
was up all night crying and Celeste could do
little more that restrain her. She was vomiting
up anything we tried to feed her. Celeste said it
was the worst night of her life by far. The
doctors were unable to stabilize her fluid and
salt levels, most likely due to damage or stress
to the pituitary gland.
I came to take over for Celeste at 8:00 this
morning. Valerie was sleeping when I got there so
I sent Celeste home to take a shower and a nap. I
got to experience a little of what Celeste did
when she woke up and the nurses gave her to me to
hold. She just kept crying and I couldn't do
anything to comfort her. I couldn't even hold her
well because of all the tubes and her head. Just
when I was about to go crazy, my mom came in and
started singing to Valerie. She went right to
sleep and stayed that way for most of the rest of
the day. As of the time I left (around 4:00 pm),
they had pretty much gotten her fluids
stabilized.
I called Celeste tonight to see if she wanted me
to come in early in the morning. She said she was
fine. My mom is staying with her tonight and
Celeste said she was able to feed her and Valerie
even even had a bowel movement. There is also
some evidence that her right eye may be working.
Please continue to pray for her sight as well as
for her pituitary gland.
We are also waiting for the final pathology report to confirm
the diagnosis of it being a JPA tumor. The doctor's are beginning to discuss
future therapy (probably chemo), but they are not in a hurry to get that
started.
God has been very good to us in all this, and I
started to have my hope renewed today that one
day Valerie will be coming home with us and will
go back to being a happy little girl.
Last night was much better than the one before. Just one
correction to Craig's email. Amy Mantel stayed with me all night - she
was the life preserver that God handed me while I was drowning. Valerie
is still vomiting a little (once today- although I might have just over
fed her). They are still trying to stabilize her fluids. Please pray for
healing, comfort, a lower more stable heart rate, a settled stomach, and
balanced fluid levels.
Little Ti passed away yesterday. His grandma,
dad, mom, and auntie had to drive back to Georgia
without their only son/grandson. Ti's grandma
seemed okay, I spoke with her as did Craig's
parents. Please keep them in your prayers as
well.
There are so many sad stories here. It makes me
thankful of how much God has blessed us. -
Praise God this place is not our home!
We got the news today that what they originally thought
was a juvenile Pilocytic astrocytoma is in fact a pilomyxoid astrocytoma,
which is a newly discovered, rare, and much more aggressive type of cancer
than we had expected. They have not talked to us about specific treatment
options yet, but there really is no known treatment for this type of cancer
that has been tested. The average life span for those with this type of
tumor is five years.
At this point we are just looking forward to
bringing her home and making her as comfortable
as we can while we wait to see what God will do.
It's all in His hands now, as I know it always
was.
Valerie is lethargic today, throwing up, and just
not herself. They are stopping the tylenol to see
if she has a fever. Please pray for her body to
heal. For the tumor to shrink and for rest. She
is sleeping more, but I am a little concerned
that something else might be going on.
I do have a couple of other requests below.
Our daughter Brooke (will be 7 on February 28th)
and our daughter Courtney (will be 5 on March
11th) love to receive mail. It would be really
nice if a few people could send them a birthday
card this year. They seem to be doing well, but
they are asking "where is Valerie" each time I
come home and missing mom and dad. I tell them
each time where Valerie is and why. I know that
receiving mail would be a joy to them. Our little
Natalie Joy will be 3 on June 16th but would love
a note too.
We also have a few bantam roosters (mostly white cochin
silkie mixed) that I need to relocate. They are starting to cock-a-doodle-doo
and our kind neighbors are most likely getting annoyed. If any one knows
of a place for them, please let me know. They are nice (not aggressive
towards people).
Valerie had a rough day today. The doctors confirmed what
Celeste had suspected, that she has a urinary tract infection. She has
started on medications for some seizures that she has been having. She
barely moved at all today and didn't eat anything. They started her back
on IV fluids since she is beginning to become dehydrated again.
That said, today was a good day. The grace of God
has been shown to me today in a most tremendous
way. I believe that God has revealed to me that
He is going to heal Valerie. I have not heard a
word from the Lord, but there have been many
confirmations of this from many of His children.
I found myself asking, "What has changed?" in
reference to the news about this being a
different type of tumor than previously thought.
I said I was looking in faith to God to heal it
before, then why am I more distraught when I find
out it is something that doctors don't know how
to treat? It's no more difficult for God to heal,
it only brings Him greater glory to heal without
the doctors being able to take credit. My faith
rests in Him and Him alone, not in the doctors or
the medicine. Even if He chooses to use them in
the process, He is the healer. If He chooses not
to use them, than He is just making it clear
where the power is coming from.
My request is that you would join me in prayers
of praise and thanksgiving for the work that He
has already begun in Valerie, that His name would
be proclaimed for it, and that all the glory and
honor would be to God Almighty.
Valerie still had low sodium levels as I left the hospital
today (Craig is there now). They are going to try to feed her some solid
foods today to see if that helps. The low sodium might be causing her
seizures. This morning she clapped her hands, smiled and laughed (it took
a lot of tickling and acting silly - but I wanted to see if she would
give me a glimpse of what is to come). She is rolling over and trying
to crawl (keeping a 10 month old in a hospital is not easy!).
God's peace surrounds us, and even when Valerie
is having a seizure - I picture God holding her,
comforting her.
Her head is healing so well - Dr Pincus keeps
reminding me that I can wash her hair- but I am
just not ready to do that yet.
Both eyes are open now and moving.
The verse that has been coming back for the past
couple of days is
Today is the day the Lord has made, I will
REJOICE and be glad in it!
This trial does not even seem like a trial right
now, it just feels like "today". My greatest
fear, was actually nothing to fear at all. God is so good to us all!
Thank you for your prayers. Please continue to
join us in praying for healing, the tumor to
shrivel up, her sodium levels to increase to the
proper amount, for her to be able to eat and
nurse - and to not vomit.
Craig and I are home together for the first time
since Feb. 7th. His parents are at the hospital
with Valerie Grace. They were wanting to put a
shunt in tomorrow, but we said no. The swelling
that they were wanting to place the shunt in for
has gone down a lot. Her fluid levels seem to be
getting normal. She threw up a lot today, but I
think it was because I over fed her.
We continue to pray for complete healing. We pray
that she is able to come home soon. Please
continue to pray for her to be restored to total
health, that she will not need any medications
for seizures, hormone levels, or infections.
Love,
Celeste
Back
Home
2-18-05
We are home!!!!!
Praise God, we arrived home with Valerie Grace
around noon. She is sleeping now. She is on about
4 medications, but one ends in 2 days, one in a
week, and the other two should be temporary as
well. She looks great. She is laughing, crawling,
pulling to a stand, etc. Thank you to everyone
who visited us and brought meals and snacks to
the hospital - what a great help that was. There
was a sweet lady that made a beautiful purple
blanket - I forgot your name - but Thank you!!!!
Thank you to everyone for praying. Please
continue to pray for complete healing. We are
thinking now that we will not be seeking further
treatment, but will most likely talk with the
oncologist in a few weeks just to see what she
has to say. There is no know treatment that is
proven for the type of tumor Valerie had, so to
God be the glory when she is healed!
Oh, What a nice day at home! Valerie had here first bath
since the 7th last night. She stayed in about an hour splashing and playing.
She is sleeping better and eating better than she was in the hospital.
She is still on four medications, but one ends tomorrow and the other
is done on the 28th. The girls are playing with her a lot and she is smiling
and laughing at them. She is still cruising around on her feet while holding
on to things. She said duck and dada again. We will go back to the doctor
on Monday for them to check her sodium levels and then that might be our
last visit to anyone other than her regular doctor, Carolyn Carter. We
are still praying about that though. We could go back in for another MRI
in 6 weeks if we want to. My parents are going back to NC in the morning.
We have meals set up for most of next week. It would be great to have
meals for March as there is a good chance Craig will be gone the first
two weeks and I doubt I will want to take the girls out to the store since
the flu is still going around. I have someone bringing a meal on the 3rd,
but I think that is the only one. If you are able to help out with a meal
you can email me back.
Thank you so much for your prayers. Please
continue to pray for complete healing. God is so
good and has shown us such mercy!!!
Valerie was getting very fussy and was waking up every hour
last night (all night!). I took her in to have her sodium level tested
again and it is 139 - which is perfect. Then the doctor wanted to do a
CT scan to see if she could have hydrocephalus. I did not want her to
have more radiation exposure, so we did an MRI instead. They did not want
to sedate her (for lack of time I think), so I went in the MRI with her.
I laid my head on her belly and looked up at her and sang to her the whole
time (yes, it was a tight fit). She did so well. She was very still, a
little fussy, but great!
They told me I needed to go talk to Dr Pincus,
which would normally mean something was not
normal. I prayed all the way up there. God, you
said no shunt - I still feel no shunt - give me
the words to say no. I felt a peace. Dr Pincus
came in and said - she looks great - everything
looks great! They thought her fussiness might be
from an ear infection or a virus starting, but
were unsure (Dr. Pincus said he does surgery, but
does not look at ears). Valerie seems happier
today, but I might take her in to see someone
tomorrow if she is still getting up a lot
tonight.
I am exhausted!!! My mom is helping out so much,
but getting up every hour to nurse her and
running around to different appointments all day
is tiring.
Please continue to pray for complete healing, for
rest, and comfort.
My verse for this week has been Hebrews 11:13-16
It is the same verse that kept coming to mind
when this all started 4 weeks ago. I kept
remembering what Craig often says "I thank God
that this place is not my home!"
"These all had faith, not having received the
promises, but having seen them a far off were
assured of them, embraced them and confessed that
they were strangers and pilgrims on the earth.
For those who say such things declare plainly
that they seek a homeland. And truly if they had
called to mind that country from which they had
come out, they would have had the opportunity to
return. But now they desire a better, that is a
heavenly country. God is not ashamed to be called
their God, for He has prepared a city for them."
Valerie is much happier now! The antibiotics she took must
have taken care of some infection, ear or urinary maybe. I was giving
her benadryl to help her sleep for 3 nights, but the third night it did
not seem to help much. Craig came home yesterday. Valerie was so excited
to see him, as were the rest of us! Valerie liked Craig before, but delights
in him since coming home from the hospital. She slept great last night!
I think because she was able to spend time with her daddy last night.
She is saying "thank you" and just about walking.
My mom will be leaving today. She has been such a
big help! My house is spotless (for one last
day). She gave me the opportunity to spend time
with Brooke, Courtney, Natalie Joy, and Valerie -
time playing, planting our gardens, catching
chickens, coloring, doing crafts, etc.
I take her in to the neurologist on Wednesday and
I will talk to them about when we can try taking
her off the seizure medication (she seems to be
tolerating it well though).
We spoke with the Oncologist, Dr Amy Smith, and
chemo therapy was recommended to slow down
possible growth. But the chemo is shown not to
cure or get rid of the type of tumor that Valerie
had. She would be on different chemos until they
came up with a treatment. They are not even doing
clinical trials now, so that would most likely be
years away. Two studies I looked at of pilomyxoid
astrocytomas (the only ones I could find) showed
more deaths of children who did chemo than
children who chose no treatment. The children
that were alive with the disease that did chemo
were alive with growth of disease, while more
children that did not choose treatment were alive
with stable disease. The studies included a very
small sample of children, and I know that God
does not work off statistics. However, the
studies seem to support the choice we are making.
We are choosing not to do chemo. We want to enjoy
her and do not want to prolong or cause
additional suffering.
God is good! We feel a real peace about our
decision that only comes from Him.
We continue to pray for complete healing - He is
able!
"Beloved, do not think it strange concerning the
fiery trial which is to try you, as though some
strange thing happened to you; but REJOICE to the
extent that you partake of Christ's sufferings,
that when His glory is revealed, you may also be
glad with exceeding JOY."
1Peter 4:12-14
Love,
Celeste
Valerie is doing very well! I took her in to see the neurologist
last week. The first thing he said was "let's take her off that seizure
medicine". He said that although this medicine does not cause withdrawal
seizures, it is best to taper it down. That way if she does have another
seizure, we can put her back on it more easily. She has not had any so
far and we are praying that she does not have any more.
I took the other girls out to Silver Springs
yesterday since our passes run out next week. We
all had a very good time. Valerie stayed at our
home with Craig's parents which was good since it
was quite chilly yesterday.
Valerie turns one next Sunday March 27th, which
is also Easter.
I am going to take her in for a follow up MRI on
April 6th (Wednesday). Our prayer is that the
tumor is gone, or shrinking.
Today Courtney handed her a water bottle and it
really sounded like she said "no thank you" and
then did not take it. I know a mamma's ears hear
their young ones say all kinds of things when
they are learning to talk - but that is what I
heard.
She seems happier each day and is loving Craig.
She cries when he leaves the room and follows him
all over. Now I know how he must have felt as
this is how all of our girls acted towards me for
their first year. When I reach for her she will
giggle and hug tight around daddy's neck. What
joy she and our other girls continue to bring us!
I attached some pictures of Valerie and the girls.
Today is the first day that Valerie was totally
off of the seizure medication. She is doing VERY
well. I will take her into the eye doctor to have
her vision checked on Tuesday. She is seeing well
enough to pick up crumbs off the floor (and often
puts them into her mouth). She is knocking into
the doorway if she is close to the left side. I
tried walking through with my left eye shut and
about did the same thing. I think she will
eventually catch on and start turning her head to
see on that side.
This whole experience has really helped me enjoy
each minute as the minute the Lord has given me
to live. I am still seeking His direction on what
we should do next though. Please pray that the
tumor is gone and that the MRI on the 6th will
show that.
Lord willing, Valerie Grace will turn 1 year old
on Sunday (Easter).
Valerie turned one today. She celebrated with her favorite
breakfast - Avocado and bananas ( the rest of us had other things). I
was woken up last night to the sound of croaking toads (Craig built a
beautiful pond outside our bedroom window.) But, I had an overwhelming
peace and feeling that something good is going to happen. It was the same
type of feeling (but opposite) I felt early January when I told Craig
that I felt unsettled and like something bad was going to happen. I don't
know exactly what that means or if it has anything to do with Valerie
or not.
She is doing great! No seizures since being home
even without the medication.
Craig called the girls together this morning for
an "egg hunt" - I thought it strange since we do
not do the bunny thing - But it was an egg hunt
Craig style. Craig emptied the sandbox and filled
it with water and plants from the pond. Then the
girls were went out and collected toad eggs and
toads from the pond to put in the former sandbox.
Brooke said it was second in excitement only to
the first Easter ever.
We continue to rejoice in each day and pray that
God has removed the tumor from Valerie.
Love,
Celeste
My faith does not rest in the wisdom of men but
in the power of God.
Just a reminder that Valerie will go in for her
MRI on Wednesday. We do not meet with the doctor
until the following Wednesday, so I am not sure
if we will know anything before then. Please pray
other eye is covered). This is a real miracle! We
are praying for another miracle to be revealed
this week!
She is doing great! Eating, taking a couple of
hesitant steps without holding on to anything,
and just being one of the girls.
Over the last couple of weeks my struggle has been waiting
on the Lord's timing. A dear friend shared the following scripture with
me this weekend in Steinhatchie:
Wait on the Lord. Be of good courage and He shall
strengthen your heart; wait, I say on the Lord.
Psalm 27:14
The MRI went smoothly, We were in and out in two
and a half hours (which is pretty good). I don't
think we will know the results until next
Wednesday.
Thank you for your prayers! We continue to enjoy
all of the girls!
We went in to Dr Pincus and got the results of
the MRI they did last week. Dr Pincus felt that
the tumor was unchanged and the radiologist felt
it had grown 2 mm. Valerie had her one year check
up yesterday and the doctor said she is ahead of
where she is supposed to be developmentally. She
is happier than ever before, walking about 4
steps now, saying several things and just so
cute!
Every time I take her in to see a doctor, they are amazed at how good
she is doing. I had Valerie's case reviewed by Dr Carson, Dr Burger, and
Dr Cohen at Johns Hopkins, and they recommended chemotherapy (a very similar
treatment to that recommended by Dr Amy Smith here). They explained that
all patients they have seen have chosen treatment and all patients are
on chemotherapy almost continually for life or until they are old enough
to do radiation. I have spoken to three other moms of children with this
type of tumor and the stories are painful. Their children are often in
the hospital and have diarrhea, low blood counts, increased vision problems,
problems walking, etc. Craig and I still feel a great peace about the
decision we have made and we do not feel that God is calling us to choose
chemo for Valerie Grace. Every time one of the doctors tells me how great
she looks, I can't help but think what they would be saying if we had
chosen to go down the path they recommended. Had they told us she would
just need a year of chemo and the tumor would shrink, we would be willing
to look into it further, but they are telling us that 40% of patients
have tumor growth while on chemo and 100% have growth after coming off
of chemo. We have not been able to find any one who did not choose treatment
for their child, but a couple of the doctors I spoke with here and in
California supported our decision and the statement I made - "why
should we choose the treatment that does not work?"
Should God tell us to choose chemo - we will be
obedient - but we feel that He is saying "no",
just as He told me "no" when they wanted to put a
shunt in Valerie - which she ended up not
needing!
Her left eye is still responding to light and the
eye doctor was amazed! He said that her eye
should not be responding since the optic nerve
was removed - To God be the glory!
Thank you for your prayers!
Love,
Celeste
__________________________________________________
4-22-05
I am amazed at how wonderful Valerie is doing! I took she
and the girls out shopping today to the grocery store and their favorite
- the Dollar Store. She is curious and happy, like most 1 year olds. She
is really enjoying the loquats off our trees, petting the chickens (with
supervision - she is overly excited about them), and playing with her
sisters.
We continue to "wait on the Lord" and enjoy today. Our prayer
is that we will stay submitted to Him and that He will guide us.
Valerie will go in to the endocrinologist in a week and
then the eye doctor the following Monday. Since there is still tumor around
her pituitary gland and right optic nerve, the doctors felt it was a good
idea to check in every now and then, so for now we are doing that.
I made a website with Valerie's pictures on it and information
on the research being done.
www.valeriegrace.com
We took Valerie to the eye doctor on Monday. She is now tracking objects
with her left eye and seeing some out of it! What a miracle! God continues
to heal Valerie in ways we never expected. I remember Pastor Eric Redmond
coming into the hospital and telling me how he had been praying that God
would restore Valerie's sight. I though her seeing anything was an answer
to that prayer. Little did I know, God had greater things in mind. (Thank
you Eric for boldly praying and sharing that prayer with me - To God be
the glory!)
I also took Valerie to the endocrinologist on Friday. Valerie had Diabetes
Insipidus. It is a caused by head trauma (the surgery in Valerie's case).
Valerie has been taking DDAVP, a replacement hormone that keeps her from
urinating constantly. I asked the doctor if she thought she would need
to be on it forever. She said, that since she still is symptomatic without
the medication, that she would need it for life, but that I could try
lowering the dose. Normally we give her a dose at night, and a dose every
other morning. On the mornings she does not get it, she drinks and urinates
a lot. This is the only medication she is currently on. Monday, Craig
and I decided to split the night time dose in half and stop the day time
dose. She has urinated normally all day today! This is the first time
since getting home that she has had a day off the medication without having
symptoms. It appears that her body is starting to make it's own hormone
again!
We are going to take Valerie in for another MRI on the 16th. Craig and
I both felt that this was something we should do since there was some
disagreement about the results of the last one. The doctors agreed to
schedule one.
Valerie is walking really well - she is the first of our girls to figure
out how to get off the couch feet first at this age. (The others would
always do a head dive).
God continues to show mercy to us and surround us with the peace that
only He can offer. Thank you for your continued prayers.
What a great week! Mother's day today, my 32nd birthday tomorrow and
Craig and I celebrate our 10th anniversary on Friday. I woke up early
this morning to find little Natalie Joy sleeping beside me. I spent some
time with the Lord, and then went in to see Valerie who was sitting happily
in her crib. Every morning I say "good morning Valerie Grace - mommy
is going to give you kisses". This morning, I kissed her chubby cheek
and she made a kissing sound herself, then gave me a kiss on my cheek
- what a fantastic mother's day gift. Then Brooke and Courtney woke up
and yelled out "happy mother's day" and gave me the sweet cards
they had made. I had breakfast waiting for them on the table. I remembered
what my mom used to tell me while growing up "I feel like I should
give you (me, her daughter) a gift on mother's day because you bring such
joy to me (Suzy, my mom). I then tidied up the house while letting Craig
sleep in a little. (He woke at 6am to see what all the hens were cackling
about (a raccoon in the trap) and had gone back to sleep).
Last week I went by the credit union and the sweet teller asked "how
is your baby doing?". I answered "great". Then as I drove
off I thought, maybe I should not have said great, the doctors keep telling
me what horrible things to expect. But then I felt God say - she IS doing
great. I don't need to think what could be, what could happen. She is
doing fantastic. I have so much to be thankful for. Craig was reading
or listening to something Michael Pearl said. He said that sometimes when
we complain a lot, God gives us more to deal with until finally we are
just happy to open our mouths and take in a breath without swallowing
a fly. If there was a complainer extraordinary - it was me. God continues
to teach me and show me all I have to be thankful for.
Valerie goes in for another MRI on Monday the 16th.
Love,
Celeste
My son, do not despise the chastening of the Lord, Nor be discouraged
when you are rebuked by Him. For whom the Lord loves He chastens And scourges
every son whom He receives. Proverbs 3:11-12
We have received several emails asking how the MRI went. Well, like last
time, we won't find out for a week - God is clearly teaching us patience
- and I have learned it this time even more than the last (a year ago
I would have said - I could never be where I am now - He is good!)
I remembered last week how years ago two of our friends who's children
were sick had someone come up to them and tell them they saw their children
playing and growing up. I cried out to God - "I have not heard that
yet, You said she will be fine, but what does that mean?" I felt
God tell me "at what point will you claim what I have done to be
a miracle?" (I got it, but it still didn't answer my question). The
next day I received the following email from Kathleen Elliot:
"We can help by "seeing" that little girl running and playing
and reading and loving school and sports as she grows up. And giving thanks
because it is so.
amen!"
He continues to show us mercy - Valerie continues to grow up and is happy
- Our girls continue to grow in their relationship with the Lord - and
Craig and I continue to grow in our strong marriage. He has blessed us
indeed!
We went in to the oncologist today and were told that the MRI done last
week showed that the tumor had grown a lot. There is also a large cyst
many times as big as the tumor. Please pray with us that God provides
us with His guidance on what to do. The options we were given by Dr Smith
are - another surgery (she is talking to Dr Pincus here, and Dr Tomito
in Chicago), chemotherapy to help prevent further growth, or continue
to seek no medical intervention. We were told that if we do nothing, Valerie
could continue to live for several years, but would have greater and greater
neurological damage, another surgery carries many possible complications.
There is no easy answer here - by the world's standards, but His answer
will be easy because it will be right.
I have to say we were surprised - she is doing so well - but our faith
is not shaken. When I came home, I gathered the girls together and told
them everything the doctor had said, and we all prayed together. Courtney
(5) prayed for Valerie to not have any fear and for healing. Brooke (7)
praised God for the life of Valerie Grace. She also again reminded us
that if God wants Valerie Grace in heaven - that is where she will be.
I just pray that we make the decision He wants and that He will make that
overwhelmingly clear to us.
Well, Monday was one of the worst days. And Tuesday was one of the best.
It seems that when I am hit with bad news that I am not fully prepared
for, my eyes drift back to the world, to only the things seen by the world.
Like I am on a roller coaster, hearing the "click,click,click"
as I am going up, seeing the peak at the top, and fearing the quick fall.
But Tuesday, I was able to turn fully to God, to know that He is still
God, that nothing has really changed .I was able to be blind to the anticipation,
the worry of the fall - and just enjoy the ride!
God send all sorts of things to help us focus on Him, a friend wrote
me something really powerful, but I am waiting on permission to share
it.
From talking to the doctors down here, it seems that surgery is not an
option. The tumor was fused to a major artery, the optic nerves, and the
pituitary. They could go in, and remove the same amount as before, but
we would be right back where we were in February, and I don't think that
is God's plan. She is doing great. She sleeps about 11 hours at night
and still takes a nap during the day. She is happy, eating well (as one
can tell when they see her cute pudgy cheeks), and, wow!, she gives the
best hugs!
We have continued to share everything that is going on with the girls.
I can't even say they are "handling things well" because God
has them in such a great place that they have never stopped enjoying the
ride. They continue to pray for her, and I do believe they understand
most of what is going on.
The MRI proved that Abraham was indeed too old to have
a son. The MRI proved that indeed Joseph's dreams of ruling and glory
were just dreams.
The MRI proved that Moses was a cowardly murderer with
a speech impediment.
The MRI proved the Red Sea was indeed too deep to wade.
The MRI proved that Jesus was dead and buried.
The MRI proved that Valerie Grace had a brain tumor that
the doctors couldn't treat.
I'm laughing now. I'm laughing at the world around me.
Can you see Him?
He's so fantastic, so wonderful, so beautiful, so good! His hands are
full of reward for your faith. His love is
perfect. His glory is sure. And you have been chosen to be an instrument
of glory. Dance before Him, sing praises to His name.
Celeste wanted me to write an update, so here goes…
Monday was not a good day. We had really become comfortable with the
idea that God was well into the process of healing Valerie. She was seeing
miraculously, growing, walking, talking, and showing no signs of anything
else. The news of her tumor growing was unexpected and very hard to hear.
I have to admit it, I gave up. My hope just dropped out. It wasn’t
like it dripped out of hole in the bottom of a bucket, it was like someone
had filled the bucket of hope and turned it upside down on a smooth surface
and when I tried to pick it up, it all just burst out onto the floor (which,
by the way, is a fun trick to play on someone - and if any of you kids
out there want to know how to pull it off send me an email and I can give
you details). I had forgotten the lesson that I had learned in the hospital,
that when they bring you bad news (and someone always will) that is the
time to lean harder on Jesus; that is the testing of our faith, good news
doesn’t require faith. So I went for a walk and Jesus and I had
a little conversation. I got the answer that I got before when I got bad
news: What has changed?
The “What has changed?” question has been a theme throughout
this ordeal. I believed from day one that God was able to heal Valerie.
It was easy to believe when the prognoses were good. When they said how
well the surgery went and that it was likely a JPA tumor, that faith was
easy. But easy faith doesn’t draw us very close to the Father. So
with each new barrage of bad news that has come, I can hear God saying
“What has changed? Do you think that I can heal pilocytic astrocytomas
but not pilomyxoid astrocytomas? Do you think I can heal cancer but not
hydrocephalus? Do you think I can heal this tumor as long as it doesn’t
start to grow? If you really believe that I can do all things (and I do)
why are you discouraged by what the doctors are saying?” God wants
me to put ALL my faith in Him, despite the circumstances.
We went back to see Dr. Pincus (neurosurgeon) yesterday, to see what
the new recommended treatment was going to be. We were expecting another
surgery, but he said that another surgery wouldn’t be worth trying,
that the reduction in tumor size that they could accomplish wouldn’t
be worth the risks. So that was good news. He also said something that
has been ringing in our ears ever since. You see, Celeste and I were feeling
pretty rotten that the tumor was growing again, and feeling guilty that
we hadn't’t tried chemotherapy earlier. We had expected God to keep
it from growing. Now we felt like it was going to be too late to start
chemo. But Dr. Pincus, after going over everything said, “…so
it looks like you made the right decision in not treating her so far.”
That blew us away. I don’t know if he meant it as encouragement
or as an actual medical opinion, but it meant the world to us.
So what do we do now? Well, we both felt like God was giving us another
chance, that He had given us a little more time. He is changing something
in me and how I view the value and purpose of life. I won’t go into
the details of how he has touched us and taught us through a sick tortoise,
a bunch of chickens, and the Terry Shivo case, but He wastes nothing.
A month ago, we couldn’t think of anything worse than the idea of
chemotherapy. The idea of poisoning our child, causing her to suffer,
for the remote possibility that it might slow down the growth of the tumor
was abhorrent. We were much more prepared to let her die peacefully rather
than live in discomfort. But what if God was choosing to use that route
to heal her? It would make some sense since that would be my last choice
of how to heal her (God, I believe, has a strict policy about not doing
His work in the way that I want and expect Him to do it). So we decided
to look into that option and listen carefully for Him to say, “NO!
Don’t do it!” But He didn’t. At every other juncture
where we have had decisions to make, He has stepped forward and guided
our decisions, not through a direct word (again that would be the way
I would want and expect it), but through a myriad of other ways. But He
has not allowed us to make a wrong decision, because Valerie Grace has
been placed in His hands by our prayers and yours. He would no more allow
us to do her harm than a mother grizzly bear would let you take her cubs.
Whosoever stands in the way of His plan for this child will have a far
worse fight on his hands that that.
Therefore, with some apprehension and careful listening for a command
to the contrary, we have started Valerie on a drug called temozolomide.
It is the chemo drug with the fewest side effects and one that we can
give her at home. The other option, carboplatin, must be given through
a surgically installed port and requires a three hour hospital appointment
once a week for 18 months. If the first doesn’t work, that will
be the recommendation. I know it’s my plan, but I would REALLY like
to avoid that.
When Mary and Martha sent for Jesus to let Him know that Lazarus was
sick, Jesus didn’t do what they wanted Him to do. They wanted Him
to jump up and run to Bethany and heal their brother like they had seem
Him heal so many others. That was their plan; God had another. Jesus’
response was to stay where He was and wait for the situation to get worse.
It wasn’t yet bad enough for God to get the full measure of glory
that He wanted out of it. I want God to get His full measure of glory
out of this situation. I admit that I don’t know what that looks
like, but I don’t have to. He knows and He will reveal it at the
most perfect time. And the worse this situation looks, and the closer
to death Valerie seems to be to us, the greater will be His glory when
he reveals what He has had planned from the beginning. His plan for Lazarus
was an unbelievable miracle that brought many to trust in Jesus –
if He has a plan like that for Valerie, I don’t want to get in the
way. God is so good to us to allow us to participate in His work.
I can't believe we are doing the chemo! We always said no-way. But we
prayed (and prayed, and are praying) and really hear God saying yes. We
have presented many "but, but" responses, but still feel yes.
Our thought was "how could it be a healing if the chemo heals"
but if this heals, it is God's healing, because Craig and I are two of
the most anti-medicine people I know - It was God's leading, not ours,
the doctors were not being pushy about it either. I really dislike going
in to the doctor - God is so cool - the nurse is going to come to my house
anytime I need someone - if anyone gets sick, etc. Valerie is doing better
today than she was two days ago. Before the chemo, I noticed her leaning
to one side and falling some while walking. Now it is better. The one
promise I have received is that she will be okay. After much more prayer
I really think God was talking about His okay - that she will be in Heaven
when her body dies (I don't know if that will be tomorrow, or in 90 years).
She has not gotten sick at all from this medicine - the doctors said she
most certainly would. Three more days, then we will go in for another
MRI in a couple of months. I think God was using this to teach us that
even when we were going with the natural healing route, we were still
seeking man's way. I don't know if that makes sense or not. There is a
huge "Christian" movement now of no vaccines, no medication,
etc. We went down that road before (never to the end), but I prayed about
it and knew God wanted me to get the tetanus vaccine for my girls, and
a couple of others. I have really learned through all of this that when
we seek Him and His answers, they are not always the same as the ones
we think are the Christian thing to do. He might tell us tomorrow to stop
doing the last two days of the medication - we seek Him daily and follow
His leading. Thank you for your prayers. I feel so strongly that this
is God's will, that I know He will protect her from any bad effects, but
we continue to pray. Maybe He just wants to see if we are willing to do
whatever He says, and He knows it will not harm her. Maybe He wants us
to do it because this is the path of healing her flesh body. I know He
wants us to hunger, to seek, and to follow.
Well, the 5 days of chemo are over. We did it once a night (mixed in
strawberry syrup). She has not had any adverse effects - eating well,
sleeping well, happy. She is saying and signing "please" every
time we go in the back field (the blueberry bushes have many ripe berries
and she loves them).
God has shown us so much - we have learned just how big He really is.
How we are to seek Him, not what some other Christian says about Him,
but really hunger for Him - until our eyes are filled with tears, our
hearts with joy, and our mouths with laughter (all at the same time).
There have been times through all of this where I have yelled out to God
- This is so great! How could Heaven possibly be better? This is truly
enough!
Love,
Celeste
NKJ Psalm 150:1-6
Praise the LORD! Praise God in His sanctuary; Praise Him in His mighty
firmament!
Praise Him for His mighty acts; Praise Him according to His excellent
greatness!
Praise Him with the sound of the trumpet; Praise Him with the lute and
harp!
Praise Him with the timbrel and dance; Praise Him with stringed instruments
and flutes!
Praise Him with loud cymbals; Praise Him with clashing cymbals!
Let everything that has breath praise the LORD. Praise the LORD!
Today the home health nurse came out for the first time to draw Valerie's
blood. Brooke, Courtney, and Natalie Joy were very concerned about Valerie.
They stayed back in the playroom, very quietly, for the first hour. Then
the door opened. One by one they came out wearing masks they had made
out of paper. Brooke had a snake mask and a tongue and was slithering,
hissing, and giggling. Courtney came out next with a beautiful tiger mask
growling between giggles. Last came Natalie Joy - no mask - just hopping
like a bunny and smiling with her hands up like a cougar getting ready
to pounce. I burst out laughing and asked them what they were doing. Brooke
explained that they were there for Valerie - I said "oh, to distract
her". Brooke clarified that they were there to protect her by scaring
off the nurse. It was such a sweet example of true love a devotion for
their little sister. It was not done to be mean to the nurse, they talked
to her for a while after they came out and were very polite -but were
willing to do anything to keep Valerie from getting a prick.
The nurse was unable to find a vein (the girls must have been praying
too), so we ended up going into Shands anyway. We were in the waiting
room for about 30 minutes. The girls occupied themselves by cleaning up
all of the cups and trash that other people had left in there, they then
asked the only other lady in there at the time if they could turn off
the TV because the show that was on was not something they felt was appropriate.
I wanted to cry - God has shown such mercy to us all! He is faithful.
The nurse at Shands was able to draw the blood in about 2 seconds with
hardly a fuss from Valerie - Though I did hear Brooke crying out "no,
don't hurt her... please!" from around the corner where she was hiding.
Valerie's blood draw came back excellent! As good or better than before
we gave her the medicine.
Please continue to pray for healing! We know He is able. Pray that we
will continue to seek His guidance. We do not want to base our decisions
on what we want or out of fear. We want to do what is best... which is
always what God wants.
We will take Valerie back in to the doctor on Monday and are planning
on getting another prescription for the chemotherapy drug since she had
zero side effects the first time. I had wanted to have another MRI done
in July rather than August, but was not feeling up to repeatedly asking
for it like last time. Then I received a letter in the mail yesterday
saying someone scheduled one on the 11th of July! God is so great, truly
in our weakest times- He is there working everything for our good. We
are praying that the next MRI gives us some leading as to what He wants
us to do.
What we have learned through all of this is that if we do not hear an
answer from God, we are to keep praying until we do - not just do what
sounds best. When we seek Him, we always find Him - when we seek with
ALL of our heart.
Natalie Joy just turned 3 yesterday and we celebrated by dissecting owl
pellets - Valerie watched and enjoyed! I attached a picture of that, one
of Natalie Joy and Valerie playing ring around the rosy, and one of Valerie
enjoying the blueberries she picked (she knows which ones are ripe on
the bush and picks the good ones!)
My prayer all weekend was "Lord, help me know what you want us to
do regarding the chemo"...I heard nothing..."Lord, tell me what
to do - I know you don't want me to base this on what I think, or to 'go
with the flow'"... I heard nothing. This morning I prayed with the
girls, "Lord, make the decision for us, you have not told us what
to do."
I took Valerie in and they did another blood test (all of the other blood
tests had been fine). I told the doctor that I noticed little fingerprint
size bruises on Valerie (about 5), but I thought they might be from all
the hugs she receives from her sisters. The doctor went to check the blood
work that they had just done and said they could not give us another prescription
for the drug since her platelet count had dropped below 50,000.
God answered for us.
Valerie is very happy and continues to enjoy life, and we continue to
enjoy her.
Please continue to pray for Valerie Grace, for healing and comfort. Please
continue to pray for us, that our eyes stay focused on Him and that we
experience the joy that is in Him every moment of every day. Pray that
we will continually seek Him and His answers.
What a week! We continue to wait on God - and He continues to answer
(never early, but always on time!)
Valerie's platelet levels went up to 177,000 last week (150,000+ is considered
normal). We were given another prescription for Temador. We prayed and
did not feel good about it. I called and asked to make sure that the dose
was correct, I felt that it should be lowered seeing that her platelets
went down last time and were not up over 250,000 like they were before
taking the drug. I was assured that the dose was correct. We prayed more,
and did not feel right about it. Long story short, the dose should have
been lowered by about 30%. We also found out that Valerie should have
been taking another medication along with the chemo that was overlooked.
What an answer to prayer! We did not go with the flow... we did not say
"God you said to do the chemo last month, so we assume you want us
to keep doing it"...we sought His guidance and did not move until
He said "okay". In prayer 2 nights ago, we heard God say "tomorrow
night". Craig and I talked about it, prayed some more (a lot more)
and still felt like this was what we were supposed to do. So last night
we gave Valerie the lower dose of Temador. She woke up laughing and giggling,
as delightful as ever! I don't know if the Temador will work, all I know
is this is what God wanted. I have learned that there is not one road
to healing. If God told us to give Valerie only coconuts to eat and she
was healed, that would not mean that anyone who ate only coconuts would
be healed. (This is just an example - Valerie loves coconuts, but eats
lot of different foods!) God chooses to heal people in all different ways
- it is God that heals; not the diet, drug, etc. Sometimes God chooses
not to heal people on this earth (our bodies will all eventually die).
That is why we continue to seek Him daily, we find great peace in this!
So many times we have been tempted to say "well, maybe this is what
God wants" and "if we did this, then this might happen"...
but we rest on the Word of God, knowing that His promises are true.
Please continue to pray for Valerie to be healed, thank Him for how well
she is doing, pray that we continue to seek His ways and that our eyes
stay focused on Him (that is when life is "effortless").
"But those who wait on the Lord shall renew their strength; They
shall mount up with wings like eagles. They shall run and not be weary.
They shall walk and not faint."
Isaiah 40:31-33
"My faith does not rest in the wisdom of men, but in the power of
God."
1Corinthians 5:7
Love,
Celeste
__________________________________________________
July 13th 2005
We found out today that Valerie's tumor grew some, but the cyst grew
40%. She is doing fantastic though - God is blessing us! We took her in
for her well child check up and she is ahead of where she should be (expect
for height and weight - but she is in the 25%). I am going to take her
in today to talk to the neurosurgeon about the cyst.
My dreams (desires) a year ago were to have 4 healthy beautiful girls
- and we felt like we had done it - like life was perfect because our
dream was a reality. But we have learned so much - that it is only about
seeking God and not the dream of what we expect life to be. We are to
seek the rewarder and not the reward. We have cried out to God - "we
are willing to lose it all (children, spouse...)- you will be enough"
but I felt God saying - "that would be too easy, you would not learn
what I have for you, you would not experience what I want you to experience".
I am really enjoying the challenge, enjoying the seeking (and finding)...enjoying
the faith that is only experienced on this earth... the faith that is
such foolishness to the world.
"For the message of the cross is foolishness to those who are perishing,
but to us who are being saved it is the power of God."
Craig is really enjoying the girls (he always has though)...I joke about
how he acts like he is still 12 years old (running and leaping over the
couch, spilling a whole trash can full of water on the kitchen floor and
just staring at it with his mouth open like a law of physics was just
violated - (that is a long story, but he is so cute).
Craig's parents have been helping us so much. Our general rule about summer
is "don't bother weeding, just live in a jungle until winter comes".
But Bob and Sara can be seen several days a week (sweating and smiling)
in our yard (weeding, mowing, etc)- Just honk if you drive by...I am sure
they will wave and welcome you to stay for a while. What a blessing!
Thank you all for your prayers - we feel them!
Love,
Celeste
"I press toward the goal for the prize of the upward call of God
in Christ Jesus." Philippians 3:13
I just wanted to throw in my $.02 worth and to defend myself against the
potentially libelous statement that my wife made. That trash can full
of water CLEARLY defied Newtonian laws. Trust me, I'm a scientist, I know
these things.
I have been struggling since February to see what my place in Valerie's
situation was. I have spent a great deal of time trying to figure out
what the right way to pray was, or what the right treatment was, or whatever
else I was supposed to do to get Valerie healed. I was continually frustrated
by each MRI result that showed that everything was only getting worse,
not better. I haven't been angry or anything, I just kept thinking that
God wasn't ready to heal her yet, that He had another plan and it was
my job to continue to wait in faith. Waiting is something I do well. Waiting
doesn't require me to do anything more than nothing, and I'm good at doing
nothing.
I had a talk with Celeste last night and had a good self realization.
I've spent most of my life waiting for God. Ever since I was a child,
I have been waiting on the day when I will get to be in Heaven. Now it's
a good thing to set your eyes on things above and to know that this world
is not our home, but it's not a good thing to view life as a doctor's
waiting room. I have used the example of life being like waiting in line
for an amusement park ride. I felt bad for the people in line who thought
that the line was what it was all about, many of whom would only get to
the front of the line only to find out that they weren't tall enough for
this ride. But I missed something in all of that. I missed that there
was a purpose in the line. I listen to people like Michael Pearl talk
about how he would like to live for another 40 years in order to become
more Christ-like, and I just didn't understand (He's already well over
40). I always thought that it would be a cruel joke for God to play on
me to make me live to be 100. So I started focusing on the angle that
the time we have here on Earth is valuable because it is here that we
build up our reward for eternity. That always seemed a little selfish
to me, but it has Biblical support. But that's not the whole picture either.
Celeste has it figured out. I keep seeking wisdom, or healing, or knowledge,
or reward, or peace, or joy, or comfort, or rest, or some other aspect
that I know comes as a result of knowing Jesus Christ, and it just doesn't
work that way. All those things are good, but they are no more findable
by looking than salvation is by trying to be good. All these things are
a result of seeking God. And seeking Him not so that you can obtain these
things, but because He is worthy of being sought.
Valerie is not going to be healed because I prayed the right prayer, or
fasted long enough, or because I just wanted it bad enough; her being
healed isn't even the right question to ask. By releasing myself fully
into my relationship with Jesus Christ, I have all I need. If you ask
yourself what I mean by that, I can tell you because I've been there before.
It means that I'm no longer waiting in line for something to come, but
that I'm experiencing it right now. It means that all the knowledge and
wisdom and peace and joy that I need are automatic and do not need to
be sought after. It means that if Valerie is healed, I will know what
to do about it and when. It means that if Valerie isn't healed, I will
be able to enjoy the time I have with her and rejoice while the world
mourns.
So if I was there before, why didn't I stay? Good question, and one that
I have asked myself many times. The answer is that it is so easy (especially
in this country) to lose sight of Jesus and get your eyes turned towards
the world. It's so easy to get sidetracked by your career, your family,
television, politics, church, ministries, shopping, playing, talking,
world events, global warming, Hollywood, sports, terrorism, books, money,
watermelon, birthdays, and taxes. And when you tend to be analytical,
as I am, getting back into full relationship with Jesus becomes a series
of steps backtracking where you went wrong in damaging that relationship.
Nothing could be farther from the truth. It's all about letting all those
things go and enjoying your Creator. David Feather said it best when he
was over at our house a few weeks ago, "Jesus is saying, 'Just let
me love you' ". What a simple message that gets brushed aside amongst
all the philosophy and theology that pass for Christianity today.
So I encourage all of you, if your relationship with Jesus has stagnated
or was never very vivid, let go of the world and let Him love you. If
you don't know Jesus at all, get to know Him - He's better than you can
imagine.
We have really been enjoying life! Sunday at 7am we decided to head down
to Coquina beach. Craig and I packed up all the girls, floats, shell bags,
and towels and off we went. The girls enjoyed each other during the ride
down. As I looked back in the van, I saw Valerie and Natalie Joy holding
hands (there is a space between their seats, and Valerie still faces backwards
- so it was so cute to see those little pudgy outstretched arms reaching
out to meet each other). None of our girls swim, so when we arrived they
were all floated up. And then there were 4 little Welch girls, happily
floating in the ocean (the water was as warm as bath water - so Valerie
really enjoyed it too). They all stayed out in the ocean for over an hour.
They saw dolphins eating, a dead puffer fish (one of the highlights),
and lots of shells. Courtney picked up an 8" conch shell and discovered
it was still being occupied by an enormous hermit crab. I was stung by
a jellyfish, so to avoid anyone else getting stung, we calmly headed out
of the ocean to collect more shells and sharks teeth. The ride home was
delightful too (well...all the girls (including me) slept). We came home
with 4 bags of shells (of which the girls have organized into many categories).
This morning I took the girls all out to Cedar Key. They enjoyed playing
at the playground, walking in the ocean, and visiting the shops.
One of the many (MANY!) ways that God prepared us for all of this was
when Mardy Freeman played a song last year at the mom's group. I don't
remember the name of the song, but basically it was the story of a man
who was dying and decided to do all of the things he wanted to do...What
we have learned is that we are to live each minute "to the full".
Enjoying it all, not saying "one day we will..." or "if
I can just get through this trial..." or "I can't wait until
this week is over...". But just enjoying it, good or bad in the world's
eyes, as a day to spend with God, enjoying Him...and "Just let Jesus
love us!".
Below are pictures of the girls at Cedar Key today
It's me again (Craig). Celeste said I should write an update about something
I was talking to her about today, so here goes.
It started out this morning when I found one of our baby tortoises in
the back yard. The baby tortoises are kept in a small pen inside the big
pen so that if they happen to get out, they are still confined in the
big pen. They have dug out of the small pen several times, but have never
got out of the big pen before we caught them again and sealed up their
escape route. But all day yesterday, Brooke was looking for Grace (her
favorite tortoise), and was convinced that it had escaped. I kept telling
her to look around the big pen, since I was sure they couldn't get out
of there. Anyway, this morning I found Grace in Celeste's garden in the
back yard, from which it could have escaped. I told Brooke and she put
her back in the baby pen. My first response was, "Thank you God,
that was a nice surprise." My second response was the following thought:
God, I didn't ask for Your help to find that tortoise. I didn't even know
she was actually out of her pen, I thought she was down in a burrow. But
You gave me this little blessing without even my asking. You also did
it twice before when you brought Brooke's favorite chicken "back
from the dead". (If you don't know the story of Pretty Flower the
chicken, then that won't make any sense to you, but long story short:
had favorite chicken....racoon killed several chickens....favorite chicken
gone....Brooke prayed for chicken.....chicken showed up a few days later....same
story happened again later.) So my thought was, God has poured out blessings
on me and my family over so many small things, why not on Valerie? And
then it all just started to make sense.
I am very careful about putting words into God's mouth, but it seemed
as if He was saying, "It is my good pleasure to bless you in all
things. I enjoy blessing you more than you enjoy the blessings. Everything
I have planned for you is a blessing, and if there was a blessing to be
had in healing Valerie already, I would have done it. But there isn't
a blessing in her healing yet. Right now the blessing is in her sickness,
and I don't think I would put you through this if there wasn't a great
blessing to be had in it. If you will rest in me, I will show you the
blessing I'm offering to you."
I've often been confused about verses such as Matthew 17:20 when Jesus
says that if you have faith the size of a mustard seed you can move mountains.
Well I have tried in faith to do smaller things than move mountains, but
nothing happens. I have even tried in Jesus' name to get the remote control
to move across the room to my hand when I didn't feel like getting up
to get it. But it didn't even budge. So I would wonder if my faith wasn't
up to the mustard seed size yet, but that wasn't the issue. The issue
was: I have asked God to bless me, and He wants to do it. If it would
have been a blessing for the remote to fly into my hand (as I thought
it would be) than it would have. But God knew that it wouldn't have been
a blessing, in fact, it probably would have filled me with pride and made
me think I was a Jedi or something. In the same way, the mountain will
move when I tell it to if there is a blessing in it for me, but if there
is a greater blessing in the mountain not moving (humility?) then it won't
move. There is sometimes a greater blessing in not seeing God's hand rather
than seeing it.(John 20:29).
So it all comes back to Romans 8:28 (And we know that all things work
together for good to those who love God, to those who are the called according
to His purpose.)
When we were praying for Pretty Flower, God saw the greatest blessing
in the same event that we wanted to see it in. Same with the Grace the
tortoise, although I didn't even expect it. And the same is true with
Valerie. He has heard every one of our prayers for her to be healed, but
it's as if He is just sitting there with a compassionate smile saying,
"If I heal her now, you will miss out on such a great blessing, and
it would break My heart for you to go without it. So look to Me and let
Me bless you. When it's all over, you will look back and thank Me for
the blessing and you will be so glad that I didn't answer your prayers
the way you wanted Me to."
Our God is amazing. Every time I think I have Him figured out, He not
only proves me wrong, but opens up a whole new door that leads to a whole
new hallway that's full of a thousand more doors that each open up into
more hallways and rooms full of the wonder and majesty and love that we
have in Christ Jesus.
I have to laugh...it has been a strange week. We took Valerie in to talk
to the neurosurgeon about the cyst. We were contacted by two other hospitals
(we were looking into other treatment options) who said "by the way...why
haven't they done anything about that cyst?". Valerie's neurosurgeon
said "I don't treat scans, I treat patients". Valerie is doing
great, so thankfully Valerie has a doctor that is looking at her, and
not a picture. We took Valerie in for an eye appointment and they told
us her right eye (her good eye) is getting worse. But she is seeing great...walking
better...etc. The nurse from the Pegasus program (a Hospice program for
children) came out today and said "why don't we put Valerie's case
on hold...she really does not need us right now. I asked, "when do
I need to take her in to see a doctor?". She said "there is
no real need for anyone to see her...she is doing great". So I laugh
in delight at how awesome our Lord is...how "I live by faith not
by sight" and "Now Faith is being sure of what we hope for and
certain of what we do not see." really plays out here...I looked
at the scan, and it looks bad! My first response was...we need to have
that cyst drained. Thankfully God made that option difficult for us, and
helped us turn our eyes towards Him, and we were able to yet again see
that "The MRI proved that Abraham was indeed too old to have a son.
The MRI proved that Moses was a cowardly murderer with a speech impediment.The
MRI proved the Red Sea was indeed too deep to wade.The MRI proved that
Jesus was dead and buried. The MRI proved that Valerie Grace had a brain
tumor that the doctors couldn't treat."
We continue to praise Him for how well she is doing, how happy and comfortable
she is, for all of the blessings He continues to provide us - He gave
Craig an extra special little blessing yesterday, just to let Craig know
that He loves him! He is amazing!
Valerie Grace is doing very well. She is saying about 25 words, laughing
a lot, and walking and climbing everywhere. We can call her name from
anywhere in the house and she will come into the room where we are, she
is a terrific sleeper and wakes up kicking her legs in excitement (I can
here the music box she kicks on in her crib and then the "boom..boom..boom"
of her feet bouncing on the crib mattress) and giggling. We had her blood
counts tested again today, and they were very good. We picked up another
prescription for the Temodar. There was a bit of a dosage confusion again,
it seems that the dosages were never written in her chart and the pharmacy
told our new oncologist that she was getting the high dosage still that
we gave her the first time back in May. Again, I prayed and felt "this
is not right", but then the thought came that maybe this is what
God wanted. Prayed some more, felt it was not right. Received an email
back from the new oncologist...the lower dose was his recommendation.
Our new oncologist is a believer too (who would have thought...the two
oncologist she has had were both Christians).
We had two great visits in the last two weeks. My aunt Kathy that I have
not seen in almost 7 years came and stayed with us. She flew in from NC
and stayed four days. The girls had a great time and are asking when Aunt
Kathy can come back and bring uncle Roger with her.
The girls were able to see an airport for the first time. The Gainesville
airport is strangely small, but the girls delighted in seeing the tiny
(huge to them) planes take off.
Last weekend my parents came down from NC. The girls enjoyed going through
the bags of rocks that they brought down from the NC gem mines. But mostly
they liked playing with their Granny Suzy and Papa Ace for two days.
As I was driving around today, I was brought to tears as I questioned
why I felt like I did not need to keep praying for Valerie to be healed.
I have only felt this overwhelming desire to praise God...like I cannot
put into words how incredible He is. I saw a picture of a mosquito taken
with a microscope today(there is a fancy word for the contraption that
takes these kinds of photos I am sure). I could not help but sit in awe
of God's creativity as I looked at the details in the eyes and other parts
of this mosquito. I could not help but thank Him for caring for every
detail of our lives just as He did when He created the mosquito.
This past month God gave me a glimpse of what my life would have been
like now had Valerie Grace never had this brain tumor, and how the lives
of our whole family would have been. It was sad. It was "perfect"
in the world's eyes - 4 beautiful healthy "perfect" children,
very stable marriage, etc. But it was so sad as I looked at how we would
have missed out on all of the incredible blessings that He has given us
this year. Blessing not in a worldly sense, but eternal blessings, the
blessing of knowing Him more - not through learning more about Him, or
studying about Him, or listening to a teaching "about" Him,
or doing any other "thing" to "grow closer to God"
but by being with Him, enjoying Him, and letting Him love us. Letting
Him teach us how we are all one body. How we now see the body as one whole
- just as in John 17:21 where Jesus is talking about just as He and the
Father are one, so the body will be one. "that they all may be one,
as You, Father, are in Me, and I in You; that they also may be one in
Us". I would not trade this year for anything! We continue to pray
for guidance, for we know that His ways are best. Just as He told me on
January 31st "you have a choice to make....choose My way, and I will
keep you safe". We are not going with the flow regarding treatment
for Valerie, we are praying each step of the way and wait for God's leading
- He has never left a decision up to us (although up until this time,
we always seemed to have a "backup plan"...thinking..."if
God does not answer, maybe that means to keep doing what we have been")
I believe that He will continue to guide us. I believe!!!
Pray as God leads you...He will!
Love,
Celeste
October 3rd, 2005
Hello all,
Last month, we all packed up and went down to Bradenton Beach. We had
a great time. Valerie enjoyed floating in the ocean as did Brooke and
Courtney, while Natalie Joy enjoyed playing on the sand. We all went to
the zoo and the aquarium. All of the girls were able to pet the sting
rays (Brooke was able to feed them). Valerie Grace really enjoyed watching
the manatees swim around at the zoo.
Valerie continues to do very well. She enjoys collecting the chicken eggs
and holding White Beauty (one of our chickens). Of course, she gets a
really good hand washing after that. She is just finished her fifth round
of the Temodar. She has an appointment to go in on October 12th at 8am
for another MRI. Craig and I both feel that God wants us to have this
MRI done, after that, I don't know what He will want - we just keep praying
that He guides us each step of the way - for He will keep us safe. The
last time she saw any doctor was back in June. The doctors said that she
is doing so well, that there is no need for them to see her. I have never
heard of a patient being on chemotherapy and not seeing a doctor, so this
must be God...or else the doctors are tired of seeing me. Either way,
it is a very nice change. I was given a stack of lab sheets, so I take
her in still to have her blood work done once or twice a month. She is
eating very well, mainly vegetables and what ever is ripe in our backyard
(often she is munching on a green pepper or fig in our backyard now).
What are my thoughts on things? Well, I really feel that Valerie is going
to be fine. It might sound strange seeing that the last MRI showed that
the tumor was similar in size or larger than it was right before surgery
- but I really feel everything will be okay. It goes against everything
that the doctors say and the tests say - but I really feel she will be
fine.
Last year I remember having lots of spare time - now there seems not to
be as much. I think it might just be that Craig works now...so I have
learned to do more things around the house and yard so we can have time
together to have fun when he gets home (I learned how to mow the lawn,
re-screen the door, and Courtney and I painted the porch and the front
of the house - all but the top 6"...we just couldn't reach).
I sunk into some lonely (albeit, self pity) times last week though - God
is really trying to teach me that He IS enough, and I have felt that He
is enough...other than last week. Self Pity is such a yucky, ugly thing...this
week I have been praying, and prayed with great intensity - "Lord,
I know you are enough...so help me get this yucky feeling out of me."
Woke up...emailed a friend to pray for me and prayed,prayed again....wonderful,
happy, happy, joyful (all of us), walking in the joy of the LORD day!
The girls looked for buried Indian artifacts in the yard a good part of
the day (they have never found anything, but have great faith that one
day they will! They did find a buried shovel and a paint brush though.)
The house and yard were full of singing and laughter today. Craig and
I have both felt that staying home, and not going to church or our family
group was what God wanted for now - that it was in Valerie's best interest
to not catch any "bugs". Our job (as parents) is to do what
is best for our children as God sees fit - and God has clearly told us
that we should stay home for now. (Andrea H. - thank you! for your email
of encouragement on that issue last week!)
Valerie will look out of the kitchen window and see Courtney swinging
outside (I am guessing over 50 feet away) and will say "rock...rock...rock...rock",
which is what she says for "swing". Valerie continues to see
very well. I see God's hand.
Our prayers are praising God for all He has done. That all of Valerie's
days here will be good days. For our eyes to stay focused on Him and not
on ourselves. For our children to grow in their relationship with the
Lord daily.
Love,
Celeste
October 5th 2005
God was allowing that dark time last week in my life to help me better
see the great truths He has for me. I was in tears all night. It was almost
too much. First I was hit with a hard lesson - the same lesson I received
in 4th grade when my best friend Molly gave most of her friends a mug
of lollipops for Christmas yet I received a simple wallet from her. Selfish
little, only child Celeste let her know of my disappointment - she said
"I picked the wallet out special for you, because you were my best
friend". Ouch!
Well, last night God said "When you sat in the hospital on nights
or mornings with Valerie when no meals came - your hunger helped you to
hunger for Me. And I helped you to appreciate the food I did send. I wanted
for you to feel the loneliness you felt last week, so you would see that
I am more than enough - that I will not disappoint you or leave you -
now be prepared, my child- I have much to show you". I can't even
put into words right now the rest, but it was so incredible. He is speaking
to me so clearly, like right before we found out about the tumor, and
while in the hospital. Last time, I remember the feeling that something
"bad" was going to happen. But now, through all of this, I now
know that "bad" is not bad when walking through it with God.
And it does not feel like something "bad" is going to happen.
I just know I am being prepared for something.
"Or what man is there of you, whom if his son ask bread, will he
give him a stone?Or if he ask a fish, will he give him a serpent?If ye
then, being evil, know how to give good gifts unto your children, how
much more shall your Father which is in heaven give good things to them
that ask him." Matthew 7:9-11
"My grace is sufficient for thee: for my strength is made perfect
in weakness." 2 Corinthians 12:9
Praise God each day is a new and for His love for us!!!How strange it
is how normally a period of feeling like I am under attack is followed
by God revealing a great truth. I don't know if that is the way it works,
or if I just seek Him that much more during the "dark" times.
I have had many times though of just praising God and getting some great
truth also - but it is amazing to see God turn sadness to laughter
"To appoint unto them that mourn in Zion, to give unto them beauty
for ashes, the oil of joy for mourning, the garment of praise for the
spirit of heaviness; that they might be called trees of righteousness,
the planting of the LORD, that he might be glorified." Isa. 61:3
Much Love,
Celeste
October 17, 2005
Well, once again we were given the wrong information. We were called
and told the tumor grew 8 times in volume, then emailed last night that
the tumor had grown from 333cc in volume to 2400cc in volume . But when
called radiology to get the report faxed to us and did the math, the tumor
actually grew 65%. Still significant growth - but now I can explain why
there is not brain coming out of her ears (sorry for the joke - but some
humor is nice around here). We have been unable to see any of the doctors
here though - it is a bizarre situation that I won't go fully into (because
I see no explanation other than God does not want us to take her in now),
but please pray that God continues to guide us.
All weekend I have been saying "I hate making decisions", then
I run back to God and rest. It is really a difficult situation to be in
- I was unable to cook or think or anything yesterday - but sweet Craig
made us all spaghetti and then Pastor Max stopped by - what a blessing
- he always comes at the perfect time (the house is always a wreck - but
the timing couldn't be better).
I will be taking the girls on a trip tomorrow - just to get away and
be with God, rather than wait around for the doctors to call (or not call,
as it was today).
So please pray for God's guidance and wisdom - that He shows us which
decision to make - He seems to like to wait until we think it is "too
late", but it never is "too late".
Today when Craig got home we all played baseball. Natalie Joy was out
back in her ballerina outfit (Aunt Kathy, she loves it!). None of the
girls quite knew the rules of the game - Natalie would pick up the ball
and run to tag the cat while Craig and I ran around all the bases. Later,
Valerie played hide and seek with everyone.
The song "What a good God you've been to me" keeps going through
my head all week - the line "but what else can I do, but give thanks
to you" is so true - We have SO MUCH to be thankful for - all of
us that know Him do!
"Let us run with perseverance the race marked out for us. Let us
fix our eyes on Jesus" Hebrews 12:1-2
"My grace IS sufficient for you, for My power is made perfect in
weakness" 2 Corinthians 12:9
Love,
Celeste
Well, right after sending the email - I prayed- okay God, you must not
want us to do this treatment. Just over an hour later - boom - they emailed
and said they would be setting up a bed for Valerie to start the treatment.
My initial response was fear - but after praying about it, I feel such
total peace that this is the right thing. The treatment is an IV chemo
(low dose). Two other children had the treatment and are fine now years
later. This is a really rare tumor (only seen in infants and toddlers)
so the data is not huge - but this is what seems to work. So why did God
lead us on this path this way??? Why don't we regret not doing it sooner
- because - we had 8 great months of not going in for treatments - we
would have always wondered if God wanted to heal her without medicine
- then we would have wondered if the no side effect chemo would have worked
- so I think He has led us on this path for that reason. Now, if we do
nothing, they told us she would have up to 3 months before major neurological
damage. Some children then go on to live like that for a long time.
Please pray that I don't let my fears get in the way, that God continues
to protect Valerie and guide us.
Love,
Celeste
October 19th 2005
We are all doing well - we went to Homassasa all day - the girls had
a great time - we saw a two headed turtle and the hippo - rode the boat
and the tram. It was great to get out of the house for the day and enjoy
God and each other.
A nurse called today to tell me surgery was going to be scheduled for
Friday to put in IV access, but when I called the surgery dept. to set
up the pre-op appointment they said the referral had not been made -we
keep asking to meet with the oncologist, but no one will see us - it is
all really weird - God is doing something - in a really strange round
about way - we are just sitting here - enjoying the ride and trying not
to analyze it too much. I have kept in contact with the doctors at Johns
Hopkins and in CA. They told me to send the scans to see what they suggest.
And yes, it is not about Valerie being healed, or us praying the right
prayer, or doing the right thing - it is all about looking to Jesus and
resting in Him (it is amazing all that can accomplish resting in Him).
I just can't stop praising Him!
Thank you all for your prayers!
Love,
Celeste
October 20th, 2005
The things that we saw as reasons not to do the treatment were
Valerie is not under the care of an earthly doctor, we did not want her
to stay overnight in that dungeon of a hospital (they told us surgery
would be done tomorrow and chemo started right away and she would stay
in the hospital at least overnight and be sharing a room with someone
else, next, a smaller reason - but Fridays are the days I spend with Natalie
alone for a couple of hours doing whatever she wants. I missed last Friday
with her because my parents were here. And, of course the fear - Craig
and I don't enjoy doctors, medicine, etc. and we do not want to see our
children suffer.
Craig and I were still trying to figure out what to do as the surgeon
was talking to us -
Craig and I took Valerie in to the doctor's office - the brain tumor coordinator
(who would have thought there was such a position) said that the doctor
who dropped Valerie back in June, now asked if she could see Valerie again
- that Valerie had been on her heart and that she really wanted to be
involved (she is a Christian and also considered very skilled), then the
surgeon came in and said he could not do the surgery tomorrow, because
no one put her on the schedule (3 people had told us that she was on the
schedule yesterday), the surgeon then went on to say that since the surgery
could not be done tomorrow, that it would be done on Tuesday and it would
be done in 30 minutes and she could go home right afterwards because they
would then start chemo on the following Monday.
My first thought was, but this is not the plan (I really like to have
a plan and do it - when bills come in, I like to pay them right away...when
Craig talks about possibly moving to Costa Rica, I begin to think about
what I need to pack) - but God said "This is my plan - it is not
your plan to be making". On the drive home there was such a peace
- and I saw clearly what I was doing...when I was very young, I had this
neat car seat in my parents old station wagon. There was a steering wheel
attached, so I could "drive". Well, off and on throughout this
week I have been in that little seat, trying with all my might to steer
the car, to stop the car by pushing my foot out as hard as I could, to
make the car go by thrusting myself forward - then suddenly I looked up
to see that my dad was in control the whole time - I saw him look over
his shoulder and smile. God is driving, I am just along for the ride -
and if I stay in the car with Him, He will continue to guide me. Phlegmatic
Craig was just sitting beside me in the back seat of that old station
wagon - looking over a little confused about all of my movement, thinking
"just chill out and enjoy, everything is going to work out".
I once told Craig - when I am where God wants me to be, I just "phleg
out" - does life feel this good to you all the time? He said "yeah,
pretty much...nice isn't it".
Yes! It is nice!
Love,
Celeste
October 24th, 2005
We will take Valerie Grace in tomorrow morning around 7:30 for the surgery
to put in a port (I still strongly dislike that word!). After the surgery,
they will be able to put a numbing cream on the area and will be able
to draw blood, give medication, etc, without searching for a vein. I think
the surgery will only take an hour or so. The neuro-oncologist called
tonight and asked if we could have her paged in the morning so she can
come and talk to us while we are waiting for the surgery to finish.
We took Valerie in to the eye doctor today and her left eye is the same
- still tracking some - her right eye, the nerve is slightly paler - but
she seems to be seeing the same.
We were emailed today by a doctor in LA who had been given Valerie's scans
by a neuro-oncologist there. He said he thought he could remove 95% of
Valeries tumor and remove the cysts. For now, that does not appear to
be God's plan.
We really have a great peace - that only comes from God - Valerie is so
happy - she laughs a lot - loves her baby doll and her sisters - and especially
loves her Dada (Craig).
Celeste
October 25, 2005
The surgery went very well. We left home around 6:45am and did not get
home until after 3pm. The surgery itself took less than an hour, just
a lot of waiting. Valerie is playing, eating, etc. She even asked for
a wagon ride with Natalie Joy (a "fast" one).
We are all fairly exhausted - well, very exhausted, actually.
Celeste
October 31st 2005
Well, last night the phone rang. As usual, Craig and I looked at each
other and grinned (we were both thinking - "you get the phone, or
let's just not answer it"). Then Craig said, "you should get
it". So I did. It was my sweet friend Amber Walters. The friend who
I judged (unfairly so), two years ago as her own son was going through
chemo and radiation for a brain tumor. The friend who so freely offered
forgiveness to me when I asked her to please forgive me for judging her
and not being there for her during that difficult time. The friend who
stood by my side and helped with Valerie as she was having a spinal MRI
back in February. The friend who has shown God's love through not only
her forgiveness, but through the sacrifice - who put down all things to
support me during this time, who has shown up at doctors visits and called
to check in on me.
Today, Amber sat with me from 9am to 1pm while Valerie was having the
chemo. We talked of things God has shown us during this time, she told
me things that I might find helpful, and yes...she made Valerie laugh!
The actual treatment took under 2 hours. Valerie sat in her stroller and
watched videos, ate pretzels, olives, cheese, and chicken nuggets, and
played with toys.
There was a young girl in the room who has been on the same protocol
that Valerie is starting. She looked great, so that helped give me a real
peace about it all too.
So, I was very pleased that I answered the phone last night, and that
my friend Amber came to keep me from jumping out the window or turning
around and coming home. Amber wrote me a sweet card with the verses below
- It is all about keeping our eyes on Jesus!
Love,
Celeste
2 Co 4:6-18
For it is the God who commanded light to shine out of darkness, who has
shone in our hearts to give the light of the knowledge of the glory of
God in the face of Jesus Christ.But we have this treasure in earthen vessels,
that the excellence of the power may be of God and not of us.We are hard
pressed on every side, yet not crushed; we are perplexed, but not in despair;persecuted,
but not forsaken; struck down, but not destroyed --always carrying about
in the body the dying of the Lord Jesus, that the life of Jesus also may
be manifested in our body.For we who live are always delivered to death
for Jesus' sake, that the life of Jesus also may be manifested in our
mortal flesh.So then death is working in us, but life in you.And since
we have the same spirit of faith, according to what is written, "I
believed and therefore I spoke," we also believe and therefore speak,knowing
that He who raised up the Lord Jesus will also raise us up with Jesus,
and will present us with you.For all things are for your sakes, that grace,
having spread through the many, may cause thanksgiving to abound to the
glory of God. Therefore we do not lose heart. Even though our outward
man is perishing, yet the inward man is being renewed day by day.For our
light affliction, which is but for a moment, is working for us a far more
exceeding and eternal weight of glory,while we do not look at the things
which are seen, but at the things which are not seen. For the things which
are seen are temporary, but the things which are not seen are eternal.
November 11th, 2005
The girls decided to go camping out back in their tent tonight. Craig
set the tent up right next to his big black light. I discovered why when
Valerie and I went out to visit. They hooked into the power on the black
light and had a space heater, lights, and a movie - they were drinking
hot chocolate and eating dried apples that grandma made. Valerie enjoyed
the visit - but will be sleeping inside tonight.
Valerie has had two of her sixty-six weeks of treatment. The first week
her appetite was decreased, but this last week she did really well. We
have been trying to get her to gain weight, but after only eating healthy
foods for the first 18 months of her life, Valerie has no desire to eat
cookies, ice cream, or drink milk. She continues to enjoy her favorites
though - cheese, olives, mixed vegetables, berries, figs, and chicken
nuggets.
Craig is going to be driving down to the Keys on Sunday to give a talk
about his mosquito research. He expects to be gone until Thursday. My
mom is coming to stay with me, which will be nice - though we will REALLY
miss Craig.
Each time Craig and/or I have taken Valerie in to Shands, there has been
some child that God has brought to our attention that just makes us so
thankful - and helps us realize how blessed we are. Well, last Thursday,
the clinic was packed - God did not have to bring one child to my attention.
The room was full of children and parents who obviously had more to deal
with than the average person. The thing that struck me was the love that
I saw in a mother eyes as she held her little boy who could not walk or
speak, or do much of anything but lay in her arms rather stiffly - I saw
a father with two extremely hyper young children with various disabilities
who showed love a patience as he repeatedly "rounded them up"
- I saw another young mother with a 7 pound baby, who was 4 months old
and had undeveloped hands, proudly show her baby to the other moms in
the room and her face gleamed with delight as she looked at her precious
child. I then saw two mothers with "normal" looking children
who were yanking their children and were obviously frustrated. The people
God led me to pray for were the last two mothers. I don't know if God
places these special children in homes where He knows they will get the
extra love they need - or if the parents learn to delight in each moment
after receiving a child who is "different". But all children
need that same love and unconditional acceptance from their parents. It
is strange, because had I walked into that room 8 years ago, I don't think
I would have been able to have children - it would not have been a risk
I was willing to take - but sitting in that room, and seeing the faces
of those parents who dearly loved their children, all I could do was praise
God for the growth that often comes from pain and for how He has taught
us to love so much more deeply this year.
Well, I am off to go visit the campers!
Love,
Celeste
November 22, 2005
Valerie finished the first four weeks of the two chemo drugs. They expected
her platelet count to go down, but it has remained really high. Her white
blood cell count has gone down some, so the doctor said it would be best
for now if she did not play with the chickens (or in the backyard, since
that is where the chickens live).
For the next two weeks Valerie will get just one of the drugs, a quick
shot rather than a 3-5 hour visit. For some reason, she really enjoys
being at Shands on Mondays and in a weird way, I look forward to it too.
It is a great time to be with her without the phone, email, laundry, etc.
And Brooke, Courtney, and Natalie Joy are enjoying spending the day with
Grandma and Pop pop.
Craig and I talk often about this year, about how wonderful it has been.
The other day we were remembering back to when we decided we should have
a fourth child. We had always planned on three, but felt like there was
someone missing. I really wanted to leave the decision up to Craig, and
he decided we should. We both agreed that had God said "if you have
another child, she/he will have a brain tumor" - we would have said
"okay then, we won't have another". But now, after having this
year, after growing so close to Him, after seeing Valerie Grace experience
so many things and seeing her just delight in life - I am so glad I wasn't
told before I was able to see clearly.
We do have a couple of prayer requests. First, Valerie's appetite has
suffered, possibly from the tumor location, but more likely from the chemo
drugs. The doctors are not real worried, but I am praying that her appetite
increases.
Through difficult times there are a few choices one can make - we can
feel sorry for ourselves, we can turn to distractions (filling our time
with books, cleaning, email, serving, tv, etc), we can panic, or we can
turn to God - seeking Him fully regarding our pain, our joy, and our love,
etc. I must then make choices to avoid situations right now that will
draw me back into the world (mode 2) - for in Him, I will find rest. If
you are so led, please pray that Craig and I "throw off the things
of this world".
Love,
Celeste
No one engaged in warfare entangles himself in the affairs of this life,
that he may please him who enlisted him as a soldier. 2 Timothy 2:8
Flee also youthful lusts; but purse righteousness, faith, love, peace
with those who call on the Lord out of a pure heart 2 Timothy 2:22
Let us lay aside every weight and the sin which so easily ensnares us,
and let us run with endurance the race that is set before us, looking
to Jesus.
December 07, 2005
Here we are, Valerie has completed 6 treatments so far. She has 4 more
weeks of continual treatments then she will go on what they call the maintenance
phase which will be 3 consecutive weeks of treatment then at least one
week off..repeat.....for another year or so. She is doing well. (we have
pictures from last month on the website). She lost some weight two weeks
ago so we started her on an anti-histamine that happens to stimulate appetite
this past Monday. The doctor had told us about two different drugs- I
was able to go online, talk to parents of children who had been on both
drugs and saw that one had caused headaches, adrenal problems, and did
not help their children's appetites - but the other drug I had heard about
caused no adverse side effects (other than mild drowsiness) and their
children ended up gaining back the weight they had lost. It seems to be
working so far - she is not chowing down - but is definitely eating more.
And she is so happy - he favorite thing to do - all day- is to point to
her bottom and say back (meaning - I want a ride on your back). She will
climb on Craig's back - laugh - and say "go" "fast".
Then Craig will race through the house at warp speed. I think Craig will
always be remembered as a fun dad. I remember him strapping a laundry
basket to his back to give the girls an "elephant" ride - and
giving them kangaroo rides through the house - jumping so high (he is
six feet tall) that he nearly gave my mom a heart attack as he bounded
through our small home with Brooke on his back.
There have been times since we started this treatment where I have felt
totally abandoned - then knew to delve into the Word - and saw, in full
light, the great truth - that God will never abandon us. The truth is,
He continues to have people call here and there to see how we are doing
- which helps me see that there is still a body out there.
During my times of questioning the feeling of loneliness - this verse
keeps singing in my head:
Though the fig tree may not blossom, Nor fruit be on the vines; Though
the labor of the olive may fail, And the fields yield no food; Though
the flock may be cut off from the fold, And there be no herd in the stalls
-- Yet I will rejoice in the LORD, I will joy in the God of my salvation.
the LORD God is my strength; He will make my feet like deer's fee, And
He will make me walk on my high hills.
Habakkuk 3:17-19
Truth is there is fruit on the trees - literally (6 laundry baskets of
oranges) and we are seeing such fruit in this house lately - our girls
have not asked for anything for Christmas (they never have though) - they
have only asked to make and give things to others. I asked them jokingly
if they wanted a pony - Brooke said "we have one". She was referring
to a wooden post Craig has set up across two poles in one of the tortoise
lots back when we had goats. Then I went out this week to see Courtney
riding on one of the tortoises while holding a branch out over it's head
to get it to give her a ride around the yard. They are truly very content
and creative children.
Christmas Letter 2005
Dear Family and Friends,
I’m writing this letter to wish you all a merry Christmas and
happy new year and to fill you in on how our family has been doing this
year. It’s been an unusual year – without question –
but one that may be remembered as the best year we ever had.
Of course, the dominant events of this year have centered around Valerie
and her brain tumor. There have been a lot of trips to the hospital for
surgeries, blood tests, eye exams, checkups, MRIs, and chemotherapy. And
all those things had the potential to make this a lousy year, especially
when coupled with the fact that none of them seem to be doing any good.
But God has poured out blessing upon blessing on us at every turn. Every
disappointment has been used by Him as an opportunity to increase our
faith. Every person who has come up to us, felt sorry for us, and given
us a “Poor you” has let us see just how much we have to be
thankful for. We are learning to keep our eyes on Jesus, and when your
eyes are on Him, the things of the world all get put into perspective.
God doesn’t look at Valerie and say, “Oh that poor suffering
child. What a tragedy.” He knows exactly what her situation is and
she is in His hands, as are we all. We may want to pout about things not
turning out the way we expect them to, and we usually do. But when things
go against our expectations, we can either get angry or depressed –
or we can step back and see that our expectations were of our own design
and based on what the world tells we are supposed to want, rather than
listening to what our Heavenly Father has in store for us. But at every
turn He has been faithful: He has shown us what decisions to make, Valerie
has not been in pain or suffered, she has been an extremely happy and
otherwise healthy little girl, our other children are happy, our marriage
is great, my job is going well, we have everything we need, and we have
had an opportunity to know God. I wouldn’t trade that for anything.
So what else has been going on this year? Brooke (7) finished second
grade this year. She loves planning parties (we have one about once a
month to celebrate anything she can think of), playing with the chickens,
and preparing her museum which she plans to open to the public when she
is twelve. Courtney (5) finished kindergarten this year. She is a truly
remarkable child, especially if there is an opportunity to upstage her
older sister. She can read very well, write more neatly than I do, do
addition, subtraction, multiplication, and her spelling is fantastic for
her age. She learns without having to be taught. Natalie Joy (3) isn’t
doing any schoolwork yet, but she is a great helper around the house.
She’s also one of the silliest children I’ve ever seen. But
she lives up to her name and is truly a joy to have around. Valerie (1)
loves to get outside. She likes to ride in the wagon and eat figs and
oranges off the trees. She is starting to talk pretty well and Celeste
claims that she can say over 100 words. Celeste has been busy home schooling
the girls, taking Valerie to the doctors, taking care of the chickens
and the rest of us, updating all our websites, and too many other things
for me to list. I am still working for the USDA doing mosquito research.
My appointment as a post-doc goes through August 2006. There is the possibility
of getting a two year extension if they want me to stay and the funding
is available. I also keep busy fixing things around the house and yard
and setting up tanks and cages for various animals.
Merry Christmas,
Craig Welch and Family
December 25, 2005
I have been on the verge of tears all day as I have watched our girls
show such love to each other. Earlier in the month they had been busy
(almost daily) wrapping gifts for each other and other family members.
There must have been close to a hundred gifts under the tree (we did not
buy any for them!). The excitement they had as they watched the other
girls open the gifts they had given was so precious - and hearing the
genuine "Thank you so much!" as the receiver opened their gift
(a book or toy that had been admired, bookmarks made with love out of
clay, items Brooke had purchased at the museum and dollar store with the
Christmas money she received from Great grandmother Hinton (that I thought
she was purchasing for her self). We have a prize box that we let the
girls choose things out of if they stay quietly in bed all night, or do
something really kind. They would choose things out this month and quickly
wrap them up for the other girls - they chose out their favorite things
to give to others! I am so blown away.
The other wonderful thing, was a little girl named Dani-Ella, who is
battling a brain tumor and currently under palliative care had always
wanted to see snow. Make a Wish agreed to fly her to see snow, but she
was unable to due to health reasons. She lives in Australia (where it
is now summer). Today some wonderful people brought snow to this little
girls home - she was able to step in snow - which she had never seen before.
God's grace has been poured out on this family and their walk of faith
is amazing!!
Valerie had a wonderful day - full of smiles, eating olives, blueberries
and other favorite foods, and just being with her family. She is seeing
great, has no balance problems, but her blood counts were very low last
week. We will take her in on Tuesday to see if they have gone up.
Thank you to the carolers who stopped by earlier in the week to sing
- the girls, Craig, and I loved it - and Valerie sings Angels We Have
Heard on High several times a day now (mainly the Gloria parts). And thank
you to all of the tortoise owners who have showered our girls with many
wonderful things, to our neighbors who have kept our home filled with
Christmas cookies, to the friends that mailed us the beautiful wreath
that filled our home with a wonderful smell, to friends who have stopped
by, written, or emailed to see how we are doing, and to everyone for your
prayers.
But the most amazing thing by far is the reason why we celebrate Christmas
- the true miracle! To God be the glory!!!!
We love you all!
The Welch Family
January 3, 2006
Looking back on this past year, I have seen so many small things that
I believe the enemy sent to try to crush our joy and hope (seeing that
our daughter having a brain tumor could not crush it)......we were without
a working dishwasher for over a month (no, we did not all break our hands).
The hot water broke to the washing machine (at a time when Valerie had
developed a yeast infection and we needed to sterilize things). The oven
heating element caught on fire and burnt all the way through, leaving
it out of commission for a while. Someone broke into our van while it
was parked in our driveway. Our incoming and outgoing mail was stolen.
And the room off our kitchen flooded ankle deep along with the screened
in porch.
While all of these are really minor things and in many other countries
having a dishwasher and working oven for even a few days out of the year
would be a wonderful thing - I really felt that it was a test (seeing
that they all happened during the past two months). To try to make matters
more stressful, Craig was informed during this time that he needed to
have two papers published by the end of the year instead of one and I
was told that the revised property tax amount we had been told of in August
was a mistake because the man doing it in August did not fully understand
how to use the calculating program and a larger amount of taxes would
be due in two weeks...-
Joy prevailed!!! I can't fully explain it - but the joy would not have
been so bright if not for the little shades of darkness that the enemy
tried to put in front of our eyes.
And when all frustration had past, and our eyes were full of Light - Craig
finished his papers (with 24 hours to spare), we received a lowered tax
bill (3 days after I paid the larger one), the oven and dishwasher work
well (though I am finding it nicer to continue to wash most things by
hand), there is hot water to the washing machine (and Valerie no longer
has a yeast infection), the room that flooded is dry with no signs of
mildew, and our joy is still full (and I realize what a super handy husband
I have!)
God has truly blessed us this year in so many ways! One way was by showing
us how He has received glory through Valerie - This is nothing that we
deserved at all, but a wonderful gift none the less.
Valerie was unable to get treatment last week due to her white blood cell
count being too low. Today her blood counts were up some, so they were
able to give her a reduced dose of one medication - but are withholding
the second for now. She is scheduled to have one more treatment, then
an MRI later in the month. She is happy - taking a lot - able to see wrens
from 50 feet away and say "birds" (I could barely see them)
- and walking, running, trying to jump, and climbing everything. We were
told in the beginning of October that we would have 2 months before we
started seeing major symptoms (sorry to my family for not sharing that
with you - but you just would have worried and stressed) - so here we
are, about 3 months later - she is doing great, gaining weight, and really
smart. We are just so thankful for each day that we are able to be here
- having faith, enjoying God, and sharing His love with others.
Now may the God of hope fill you with all joy and peace in believing,
that you may abound in hope by the power of the Holy Spirit.
Romans 15:13
Love,
Celeste
January 9th 2006
Valerie had her last treatment of the induction phase of the protocol
she is on today. We are planning on having an MRI done next week sometime
and she will have at least two weeks without any treatment. We have become
friends with the MRI nurse and so although there were no appointments
available, she called our home today and said she will find a spot for
Valerie next week.
Valerie's blood counts were all very good this week. She has also been
gaining weight, even without the appetite stimulant. They suggested that
we not give her that medication because it made her drowsy and drowsiness
is a symptom of the cyst/tumor growing - so they want to be able to watch
for that. Valerie has really enjoyed all of the people at the clinic,
especially her nurse, Anne. Unfortunately Anne has decided to leave -
so we gave our hugs today - I will really miss her. God has really given
me a love for the people there (or has just put people around us that
are easy to love).
We have learned a lot this year, but I have been tested in big ways over
the past few months when it comes to relationships. In part, from being
isolated and feeling lonely at times - in part from hearing from people
that we are making the wrong decisions/or that we waited too long to start
the chemo. But I know that we have done things just as God has called
us too, and truly have no regrets (other than the way I feel when I hear
such things) . I believe I should be able to just Love people no matter
what is being said to me... this is one area that I could really use prayer
in. That I would know that people are saying things out of love or to
help, or not saying anything out of just being uncomfortable and not knowing
what to say. I just want to be able to love them where they are. It is
a heart issue - and I know mine is not fully where God wants it. I keep
hearing the words Paul spoke "pursue love" - and that is what
I am doing - I want more.
Thank you for your prayers!
Love,
Celeste
January 13th 2006
We ended up taking Valerie in for an MRI this morning at 8am (they had
a spot open up). The doctor told us that she felt the chemo was working,
but that she now has hydrocephalus - something I had suspected 4 weeks
ago seeing that her head was larger (she could not fit her favorite necklace
over her head anymore) - but no one measured her head when we started
the chemo - so once I noticed, there was nothing to compare the current
measurement with.
The hydrocephalus is being caused by a new cyst that has formed, and they
are suggesting that we have them put a tube of sorts between the cyst
and her ventricles and then a shunt that drains the fluid in the ventricles
down to her stomach (if I understand them correctly. The neurosurgeon
is out of town until Tuesday.
Please pray that we know clearly what God wants us to do - and that if
it is not doing the shunt - that we are able to have peace about it and
that Valerie would suffer minimally. If it is to do the shunt, that we
would have a peace about it - that the surgery would have no complications
- that the shunt would work properly and that Valerie would have no infections.
She is still a little wobbly from the sedation this morning, and crankier
than normal - but we are praying for a "good" day tomorrow.
There is this pain that comes with each MRI - there is a mourning that
happens - but with each one, there has been less and less shock, but a
little more pain. It helped that I went down stairs to pick up a CD of
the scan and was able to see it for myself before I received the call.
I imagine that if we decide not to do the shunt, it will cause quite an
uproar, so please pray that we seek God fully during this and not what
we want, the doctors want, or what anyone else tells us is the "right"
thing to do.
Love,
Celeste
January 15th 2006
Well, it has turned out to be a wonderful weekend. We are really at peace
with everything. Right now, we think that surgery is going to be sometime
next week. Throughout this we have felt that what God wanted was for Valerie
to be as comfortable as possible - and we both feel a great peace that
having the surgery will make her days more comfortable. We are assuming
that surgery will be sometime late next week or the following week - but
will know more when we have a chance to talk with the neurosurgeon.
Valerie has no symptoms at all - other than she is laughing more (which
is a symptom of feeling good!)
We have no worry right now, no fear, no sadness (and Valerie doesn't
either). This was the first time that the "pain" from the MRI
results were very short lived - and His peace was felt through every second
of the pain.
The picture is of Valerie and Natalie dancing with Kiwi (the bird).
Love,
Celeste
Rejoice with those who rejoice, and weep with those who weep. Be of the
same mind toward one another. Do not set your mind on high things, but
associate with the humble. Do not be wise in your own opinion.
Romans 12:15-16
January 18th 2006
What a day! We went in at 8am for the appointment with the neurosurgeon.
We really wanted this done endoscopically - but thought this would be
"undesirable" to the surgeon - he said "I want to do this
endoscopically" - he also suggested to do a shunt after draining
the cysts. When I was in his office, we talked about doing this without
the shunt. He said "I gave you a 0% chance for Valerie living without
a shunt last Feb. - You were right, she did not end up needing one. So
I am going to leave that up to you. I think there is a 0% chance that
she will not need one this time - but I was wrong before." I called
Craig (who thought the shunt was a good idea this morning) - and he said
" let's try it without the shunt first". So I called the surgeon
back and let him know. They scheduled surgery for tomorrow - sent us to
pre-op (for 3 hours), the eye doctor (for an hour), and then CT scan (we
waited 2 hours and then were told two trauma cases came in and it would
be at least a couple of more hours (I was almost out of food for Valerie).
Then the surgeon called and said he would be doing the surgery next Monday
so that she can be his first case in the morning - so we asked if we could
reschedule the CT scan for Friday.
I got home and my wonderful husband had the girls fed, dinner warm for
Valerie and myself - and ran me a warm tub with candles and all (without
me asking) - so spending 8 hours at Shands did not make for a horrible
day. I had many opportunities to talk to some very interesting people
while I was there (it is amazing how a cute little girl can start up a
conversation with a stranger).
Her blood counts are normal now (which is amazing to us seeing that she
had chemo last week and the week before). I donated blood Monday, but
it would be a rare case for her to need any.
I got home and my wonderful husband had the girls fed, dinner warm for
Valerie and myself - and ran me a warm tub with candles and all (without
me asking) - so spending 8 hours at Shands did not make for a horrible
day. I had many opportunities to talk to some very interesting people
while I was there (it is amazing how a cute little girl can start up a
conversation with a stranger).
Craig and I really feel a peace about the surgery (without the shunt)
seeing that we were told the hydrocephalus was caused by the cyst and
not the tumor. We were also given the option of doing nothing - but I
don't think that is the right thing (the surgeon did not either).
We are praying that she does not develop symptoms before the surgery,
that fenestration the cysts and doing coagulation will resolve the hydrocephalus,
and that Valerie (who's name means "strong"), stays strong through
out this and that she is comfortable. We will continue praying about the
shunt also.
January 22, 2006
We will take Valerie Grace in for surgery tomorrow (Monday) morning at
6:30am. I am assuming the surgery will begin around 8am and last a couple
of hours. We have decided to have Dr Pincus do the cyst fenestration alone
without inserting the shunt. The cyst fenestration is the first part of
the shunt surgery they were recommending. We really have a great peace
about this - and we were willing to do the shunt before talking with the
neurosurgeon and praying about it.
We went to the museum and butterfly gardens this week seeing that Valerie's
blood counts were normal. She spent the day playing outside, chasing her
sisters, and watering the grass (it was a beautiful 80 degree day!).
Please keep Valerie Grace in your prayers. Pray that the cyst fenestration
works, that there are no infections, that God watches over Valerie, the
doctors, and anyone involved with her care. That she has no nausea and
recovers very quickly. Please pray for Brooke, Courtney, and Natalie Joy
- that they will have a peace as well. And for Craig and I - that we continue
to seek Him continually!
Love,
Celeste
The girls at the butterfly gardens - 1/19/06
Valerie and Natalie laughing. January 21, 2006
January 23rd 2006
A quick update - Valerie came out of surgery talking and full of energy.
However, she has not slept much at all (maybe 30 minutes all together).
She initially had a fever from blood getting in the brain when they drained
the cysts. She had external drains on for 20 hours, then they did a CT
scan this morning which looked very good - they then clamped the drains
and will most likely scan again tomorrow (and hopefully we can go home).
She has no fever, has been drinking and nursing since she came out of
surgery - but has only eaten one blueberry. Please pray that we are able
to go home soon (I miss my other girls), that we both get sleep tonight,
and that her ventricles are able to drain on their own.
Thanks for your prayers (and the many emails which I will most likely
read once we get home) - Craig is with her right now - so I am return
from my quick break.
Love,
Celeste
January 25th 2006
We brought Valerie Grace home today. She still has a fever (the surgeons
nurse told us to bring her in tomorrow seeing that she is still laughing
and playing). Valerie and I spent Monday through today in the tiny room
of the PICU. She was in a big girl bed this time so I was able to sleep
beside her (and we both had fun playing with the adjustable bed).
The surgeon opened the drains today that were in her head (one in the
cyst/one in the ventricle) and the cyst had no pressure and the ventricle
had normal pressure so they removed the drains (from my baby's brain!)
right there in the bed we were sleeping in and stitched them up - no numbing
medicine - it took only minutes and she started eating right after they
were out.
So we are praising God that we went with what we felt Him telling us to
do - and we are continuing to pray for the fever and any possible infection
to clear and for her gas to clear up (which we think has been causing
her to throw up).
Over all we have slept about 4-5 hours since Sunday night, so please pray
that she sleeps well tonight. We can't give her anything to help her sleep
right now because we are watching for other signs of infection (drowsiness
- although we are both rather drowsy from not sleeping).
Sorry if this is not understandable - I am very sleep deprived, but wanted
everyone to know a bit about what is going on.
Love,
Celeste
January 26 2006
We were thinking about taking Valerie in to the ER - but they told us
the wait would be until the morning (the major downfall of being at a
trauma hospital!).
We went against the doctor's orders and gave her benadryl last night
to help her sleep (I figured it was useless looking for the symptom of
drowsiness in a sleep deprived child - so I could tell more accurately
if she had a good night sleep). She slept 10 hours and woke up fever free,
happy, and no more vomiting! She has been playing today and walking more.
She does have a 4" incision on her head. I was curious as to why
since the surgery was to be done endoscopically. When I called to ask
I was told that Dr Pincus did not want her to have another scar and that
he chose to cut the skin along part of the original scar from the first
surgery. He is very concerned about his patients hair (does the cut so
that there will not be a part along the scar).
We will take her back in for another MRI in a month to make sure everything
is draining properly. Thank you for your prayers - she is such a tough
little cookie!
Love,
Celeste
January 27th 2006
Today was rough - Valerie threw up again (food she had eaten 12 hours
earlier). She was very fussy (almost constantly screaming)
The NS called us back and said to go in for a CT. Little Valerie sat
absolutely still the whole time - I was holding her hand reminding her
to stay still and she so sweetly said "okay mama" over and over.
The NS office called and said "don't let her have anything to eat
or drink and get up to clinic". (of course I am crying and Craig
and I are thinking -surgery!). We get up there two of the nurses make
trips to the prize box to get Valerie a toy- the NS comes and scoops her
up and takes her for one more trip down the hall to the prize box, then
comes back and says "scan looks fine, there is still some hydrocephalus,
but that is to be expected - it certainly is not worse and will take time
to get better". The nurse listened to her bowels and said they sounded
like they were moving. She has been fine since we have been home. She
had a BM and ate dinner with us. It makes me wonder how much is her seeing
me worried and then feeling bad - and how much is her really feeling bad.
There have not been many days of worry throughout this year - and I know
that the worry does not come from God.
So the whole first half of the day I was in a place of "I can't
do this anymore, I am just ready for this all to be over" - "I'm
the one" kept going through my mind - I am the one who has to do
this - I am the one who knows which doctors to call, where to go for a
CT scan, what to say when I get there......The more I thought about it
the more worn out I became - when people have asked what they can do to
help - the only things I could think of are things people can't help with
(getting dressed, nursing Valerie, washing my hair, taking her to the
CT scan, etc). But, I am not the one - God is the One - He will see us
through this - as Craig prayed early on last year -
I prayed to God:
O Lord God Almighty in Heaven,
Are you not the God who created the whole
Earth and all that is in it?
Are you not the God who has redeemed us
and called us your own children?
You rule over all of mankind and all of creation.
We trust in you and we know that your promises
are true and that you are trustworthy and good.
There is nothing that escapes your sight and there
is nothing that can stand against you.
You are our fortress, our strength, our peace, and our healer.
But look Lord, at my situation, this tumor which
has attacked my child who is called by your Name
- it has been rebuked in the Name of Jesus, yet
it remains. It has defied the command spoken in
your Name. Will you not judge it, Almighty
Father? For we have no power against this enemy,
nor do we know what to do, but our trust is in
you and you alone. And we wait to see what good
thing you will do.
And the Lord answered me:
Listen all you who are called by my name, and
hear what the Lord God Almighty has to say. Do
not be afraid or dismayed because of this enemy
that stands before you, for this battle is not
yours but mine. Stand firm and watch. You will
not have to fight this battle, I have heard the
prayers of the saints and they are a fragrant
offering before me. Watch and see the salvation
that the Lord will bring, this battle is mine and I am with you.
I don't have to fight this battle! He is the One! He is Love!
He certainly brought me to a deeper understanding of love today - it
was allowing me to feel Valerie's suffering - to feel Jesus's suffering
- it was pure Love - I am sure there is a better way to explain it - but
I just don't have the words.
Please continue to pray that our eyes stay focused on Him - that the
love continues to grow (even through the pain). And thank you to the ones
who helped walk us through this day - your calls and visits were a tangible
reminder of what love is.
Love,
Celeste
January 30th 2006
It seems that all of the complications Valerie was having were due to
constipation. Go figure?? She has been happy, eating well, etc since Friday
night (after a lot of prune juice and epsom salt baths). She is actually
acting a little "smarter" than normal.
We are having a wonderful time (the girls and I) enjoying God (through
reading and singing) and each other. His Word is so powerful!
Thank you to those who shared things with me this past week - you were
a great encouragement - and brought my eyes back to where they should
be.
Love,
Celeste
"The Lord your God in your midst, The Mighty One will save; He will
rejoice over you with gladness, He will quiet you with His love, he will
rejoice over you with singing."
Zephaniah 3:17
"I will greatly rejoice in the Lord. My soul shall be joyful in my
God; For He has clothed me with the garments of salvation"
Isaiah 61:10
"But the Lord has been my defense. And my God the rock of my refuge"
Psalm 94:22
He shall cover you with His feathers, and under His wings you shall take
refuge; His truth shall be your shield and buckler. You shall not be afraid
of the terror by night, Nor of the arrow that flies by day....."Because
he has set his love upon Me, therefore I will deliver him; I will set
him on high, because he has known My name. He shall call upon me and I
will answer him; I will be with him in trouble."
Psalm 91:4-5, 14-15
February 3rd 2006
Well - the last 3 Fridays we have been at Shands Hospital. Yesterday
morning I was noticing how well Valerie's incision was healing - then
after lunch I noticed a small dried piece of fluid in the middle of the
incision. We called and were told to come in to the ER if it leaked more
- it didn't, so they told us to come into clinic this morning. The girls
spent the day with Craig building mosquito traps at his work. The surgeon
put a couple of stitches in where the leak was (no numbing - right there
in the clinic room - she barely cried - amazing). She then had a CT scan
which showed that the hydrocephalus was better than before - so it appears
the ventricles are working normally. They then did a spinal tap to check
for meningitis - the quick test came back negative. So, after about 7
hours we arrived back home. They will do a long test on the spinal fluid
that will take 72 hours. She is acting totally normal- We were told we
can watch and wait - do a shunt next week - or have her sedated so they
can check the spinal fluid pressure. If we see more leaking over the weekend,
we were told to take her to the ER since the risk for infection rises
if there is more leakage.
Over all though (other than the 20 minutes of stitching, scan, and spinal
tap) we had a really good day. The thought I have had though the last
few weeks is - in a lot of ways - things are easier when no options exist
- life in the jungles of South America or before modern medicine just
must be much more simple. We are willing to do whatever God wants though
- shunt - whatever - but it is going to be His call. The surgeon here
is great - everything (from the stitches to the scans to the tap to the
shunt) is presented as a treatment option - and he continually tells us
how he has been wrong about the shunt in the past so he is not going to
say she "needs" one now.
There were so many truths that ran through my head today - so many Scriptures
- also a lot of humor (mostly between myself and God - but some was shared
with the surgeon, friends, and family) - humor might seem in bad taste
to some - but God has really used it in our family to keep us joyful and
focused on Him - and when Valerie sees us laughing - it helps her keep
laughing -
"Today is the day the Lord has made - we will Rejoice and be glad
in it!!!!"
We would appreciate prayers for continued guidance and comfort - and
joy!
Love,
Celeste
February 13th 2006
Valerie's incision leaked again slightly over the weekend (less than
1/8tsp.). The doctor is refusing to repair the incision without also doing
a shunt. They were wanting to admit her today, but agreed to do the spinal
tap then let us come home and wait for the results. If there is an infection
- she will be admitted tonight and start on antibiotics, otherwise, we
think she will be going in for surgery tomorrow. Had we decided to do
the shunt the first time, things would be the same (two surgeries) since
blood entered the brain when they drained the cysts - the only difference
is she had more time to recover between the two surgeries. So, more than
likely she will be having shunt surgery tomorrow (there will be a permanent
programmable shunt in her head with a tube that drains spinal fluid into
her belly area).
She is totally symptom free - other than her incision not healing properly.
I hear her playing with Craig in the other room right now. She laughed
during the CT scan today - sat perfectly still and giggled the whole time.
I guess the only question I have had is why this path? To what end? But
that is not the purpose - it is the process and not the outcome that God
is interested in.
I had a discussion with God this weekend "but she has missed weeks
of chemo" - I kept hearing God say "missed what?, who's plan
is this?". So, I was fine today as we left the chemo room without
getting treatment - but the pain of hearing my child scream as they did
a spinal tap (which they told me this time I had to let them do before
surgery) -it is hard ---I wish we had been given the easier path - the
path of no treatment - but to have done that would have been to go totally
against what we heard God telling us to do --- It is not our plan - it
is His - and we are willing to follow where ever He leads! The one year
infection risk from a shunt is 50% - please be praying with us that Valerie
recovers quickly (they are expecting that she will be in the hospital
for 2-4 days), that there is no infection, and that everything goes just
the way God plans. This is painful, and I have told God many times that
I am okay with whatever, but the pain hurts - I was willing today to walk
back to the car with an empty stroller if the spinal tap had caused Valerie
to die (which can happen with children who have large brain tumors) -
but that was not His plan.
Love,
Celeste
Peace I leave with you; My peace I give you. I do not give to you as the
world gives. Do not let your hearts be troubled and do not be afraid.
John 14:27
February 14th 2006
Valerie just went back for surgery (after a 4 hour wait). They are going
to put in a medium pressure shunt (we discussed all of the options thoroughly
and agreed with Dr Pincus that this is the best option for Valerie). She
has been so sweet all morning (especially considering she had nothing
to eat of drink since last night). We are unsure if she will be in the
PICU or the regular pediatric floor (the dungeon) after surgery.
Please pray with us for a fast recovery, no vomiting, no infections or
low sodium issues, etc.
Love,
Celeste
February 15th 2006
We are home! Valerie wanted to jump on the bed as soon as we got in.
She is feeling great. The incisions from the shunt surgery are barely
noticeable, but the incision that they had to repair from the surgery
3 weeks ago is rather grotesque.
Today is Craig's birthday! What a wonderful birthday present! Brain surgery
and home in less than 24 hours!
Thank you for your emails of encouragement and your prayers!
Love,
Celeste
February 20th 2006
Valerie is continuing to do very well - her top incision is healing nicely
and the incision in the back of her head is near impossible to find (that
is the one where the shunt was put in). The incision on her belly is itching
her, but looks only like a skin blemish (it was sealed with glue).
She has been eating well, sleeping well, laughing, dancing, doing all
her normal things.
The girls have been swimming in there kiddy pool, and Valerie very much
wants to join them, but the doctors said no baths or water fun until they
see her again in another week or so. Natalie Joy has been be harvesting
the carrots that she planted two months ago - all of the girls have delighted
in that and helped in eating the bounty.
Over the past month or so I have had these strange feeling of guilt -
feeling guilty that I was "blessed" with a daughter who has
a brain tumor. I don' t know if I can fully explain it - but if you walked
through something difficult while being led by the hand of God...well,
I think you know what I mean. There is really no need to pity us or feel
bad for us - we are rejoicing in the Lord daily. We have grown so much
and still have so much left to learn. Each hospital stay is different
- each piece of bad news is different - God has changed us so much - it
is really amazing. I don't know what the difference was with the last
"thing" (the shunt surgery) - but there was such a peace from
the beginning of it, we saw God's hand in everything that led up to it
- and were amazed at how calm Valerie was even waiting for hours without
eating before surgery, she fell asleep in my arms as we were waiting in
pre-op and had her arm around the anesthesia nurse who carried her into
the operating room without a fuss. She ate immediately after surgery and
slept well (for the first time in the hospital). We continue to pray for
no complications or infections - and for peace in not "doing"
anything chemo wise for at least a few more weeks (I keep reminding myself
that it is God's timing - we were so against the chemo - then had such
a peace about doing it - and now are resting once again in not doing it
- it simply is not an option right now, which is always nice to have God
take away an option so that we can pray about other things).
If you have a chance, please pray for Candace Joy - she is a sweet little
girl that was up at Shands when Valerie was there - she has some sort
of bacteria that has been eating away at her muscles. Her family is strong
in their faith - but as I well know, it is painful to see one's child
suffer. Her parents set up a website for her www.candacejoy.org
.
Love,
Celeste
February 27th 2006
I will be taking Valerie Grace back to Shands around 1pm tomorrow. They
are going to sedate her and take out the stitches on the incision that
had to be redone. (Odd how they put stitches in w/o even numbing her head
but they are sedating her to take them out). She is doing very well though.
She went in for her well child check up today and is above average in
everything but height and weight. We did end up getting her the Hep. B
vaccine after the neurosurgeon highly recommended that we get it. He said
that there are still cases of people getting Hep. B from blood transfusions
(even with current testing). Valerie has only received my blood in the
past - but we felt it is a good idea to get the vaccine seeing that there
is a 6 week gap between when my blood must be thrown out and when I can
donate again. Valerie did great - but again I could hear Brooke (who asked
to step outside the room) crying - Courtney told me she was telling Brooke
a story she made up until her story included something about a shot -
then she had to "turn the story around".
We had a bit of a mystery solved this morning. We found a dead mutilated
animal in one of our tortoise lots a couple of weeks ago - after soaking
it the bones appeared to be from out cat Peek-a-Boo. We were at a loss
to figure out what did it - we have hawks - but they typically carry animals
off - and a raccoon would not leave part of the body like this one was
- so a fox came to mind - but a cat could out run a fox. Well, yesterday
morning we found over 12 chickens dead - heads gone - we thought a fox
must have figured out a way to get in the nest box - Pretty Flower (our
miracle chicken) is fine - and now locked up in a dog pen - Thanks Frances
Tramell!!!! The pen has been a wonderful thing to have!). Anyway, I woke
up this morning and heard the hens cackling and looked out the window
- A COYOTE!!!! waiting by the chicken door that is set to automatically
open in 30 minutes! So it all made sense - but what do I do? I ended up
cutting off the breaker to the chicken door and then scaring off the coyote
- which wasn't hard to do even from inside the house. So this beast had
waited outside the chicken door and had the chickens walk out one at a
time yesterday while he mutilated them - so Martha, White Beauty, Big
Sylvia, Spot, Malvina, and many other white cochins (which I am sure had
names, but I don't know them all) are now gone. The girls were upset -
a little tear went down Brooke's cheek as she heard Martha was gone (Mary,
her sister died a couple of months ago). So now we are working on better
fencing plans, and the girls have already picked out more chickens to
order (another Mary and Martha - white cochins, and Big Sylvia and Malvina
- buff orpingtons will be in the mix - but white beauty and spot were
mutt chickens that would squat down for Valerie and Natalie to pick up
- the girls already are talking about how they can breed some new mutt
chickens. I had also ordered the girls some archery equipment last week
- so maybe they can take care of that coyote - but if they have aim anything
like their mama - maybe not.
God continues to bless us in so many ways - yet I am still battling with
times of feeling lonely - which still sends me right back to God - so
there is victory in that - I keep hearing Him say - "I can give you
(this and that) or I can give you Me" - that is a no brainer. There
is a bit of excitement in that Craig's job might be ending in the summer
- I am excited to see what God has planned - we are up for ANYTHING -
Costa Rica, Arizona, Hawaii....all places that have come up - we are up
for staying here or moving to the other side of the world - it is a really
great and exciting place to be with God.
Please pray that Valerie gets in and out of surgery tomorrow well - with
no complications - tomorrow is Brooke's birthday and we would both love
to be home for her party tomorrow night. When I asked her what she wanted
for her birthday she said she wanted to play games with her family - I
would like to be able to give her that.
Love,
Celeste
March 6th 2006
God continues to answer all the "whats". Today I took Valerie
in to have her head looked at by neurosurgery. They were to give the "okay"
to resume chemo treatments. They said her head looked great - so we headed
over the oncology. While praying I heard God say "she will not get
chemo today" - immediately I thought - what will I say - should I
go home.....but I felt that God was telling me to stay on course. They
ordered the chemo (since her blood counts have been good since January).
The first chemo that came from pharmacy was for a "Wendy Welch"
- we were the only Welch family there, so that caused a delay - the next
thing was the dose was wrong (it was really interesting to sit back as
God told me to and wait). Anyway - the new dose came in and then the brain
tumor coordinator flew around the corner to say "hold the chemo".
Valerie's counts were too low (really odd since they were good after surgery
and were looking as if they were going to go higher). By this point we
had been at Shands for over 4 hours - but just resting and enjoying God
and watching how He worked everything. There was a clear reason why God
had us there today and the last time we were in and did not get chemo
- but it is interesting how God wants me to follow Him step by step rather
than showing me the "big picture" - most likely because I would
say "oh, that's the plan. I can do that" (and would just mess
it all up because I would be doing what I thought He would want, rather
than seeking Him moment by moment). I had a smile on my face all day -
just marveling at what a living God we serve!
God has been showing me so much this past month about faith - how we
are not to step out of the boat and walk on water until He tells us too.
It is about seeking Him and waiting until we hear from Him - then obeying
(regardless of whether or not it makes sense to us) - because then, in
the end we will be able to look back and see God's hand.
About the coyote - the girls dug a hole deeper than they are (they have
a rope tied to a gate that goes down into the hole so they could get out
after they were done digging. They have since covered the hole with limbs
and baited it with a chicken nugget. It is fascinating to watch young
minds at work!
Love,
Celeste
March 13th 2006
Valerie's counts were normal today, so she had chemo (though we requested
that she only have one of the drugs after a lot of prayer). She did fantastic!
Some of the things that concerned us about the way they were doing things
have now been changed! God nudged me to bring these things to the attention
of the doctor last week, who asked me to speak to the head nurse, who
ended up changing things (in a big way) and is now meeting with the head
of pediatric nursing at Shands to see about having these changes made
throughout Shands. It is all about obeying God!
We had a big weekend. Courtney turned 6 (and lost two teeth - she wiggles
those things for a day and then yanks them out - as I cringe!). Brooke
and Courtney also took their chickens to the chicken show. Brooke spent
$3.25 at the show. $2 went towards lollipops for her sisters, 25 cents
towards a peacock feather, and $1 to enter a raffle to win a lion head
bunny. Craig agreed that he would build a cage if Brooke won the raffle
(which Craig saw as highly unlikely seeing the number of tickets in the
raffle jar. Well, at 2pm on Sunday Craig received a phone call letting
him know that Brooke had won the bunny (which we has a pedigree as long
as your arm and is worth $150!!??). So, Cuffie the bunny now lives in
a beautiful cage that Craig and Brooke built last night. All day yesterday
Craig walked around the house laughing and shaking his head.
Please continue to pray for Candace Joy who continues to battle with a
flesh eating bacteria (www.candacejoy.org) and Jared (who is battling
Tetanus after being bit by a dog).
Love,
Celeste
The girls at the chicken show (they insisted on wearing dresses) *****
Brooke and Cuffie the bunny
March 16th 2006
Valerie threw up this morning so the doctors ordered a CT scan - she
was fine after throwing up, so we thought it was nothing. The scan showed
a large cyst in her third ventricle and they wanted to admit her right
away. They agreed to let us come home and pack some stuff up first. Please
pray that we make the right decisions for Valerie. I am really at peace
about things - just feeling a little rushed. If anyone wants to call,
my cell phone number is 514-7329. I could really use some bottled water
at the hospital (I have had no time to get anything ready) - and some
thin stick pretzels for Valerie would be appreciated!
Love,
Celeste
March 17th 2006
We are home!
I had a wonderful experience going into Shands - I heard my foot steps
in the parking garage (loud and echoing) and it was as if I was hearing
with the ear of God - like He was hearing my footsteps before they made
sound to my ears - I knew I was walking in the exact steps He wanted me
to walk at that moment. My friend Amber called and sat with me at the
hospital last night (and brought pretzels and water). She and Valerie
played peek-a-boo through the bed rail (I am going to post pictures on
the website soon - it was so cute!). Then Amber would put her hands on
her cheeks and say "oh no!" and Valerie would do the same thing
- in fact, Valerie continued to do that after surgery.
When Dr Smith called us yesterday, I was in the ColdStone Ice Cream parking
lot with all four girls - she told me we needed to admit Valerie. We went
and ate ice cream (happily) and Shands called to ask where we were now
and how soon we could be in. I told them we were at the ice cream shop
and were going to finish enjoying our ice cream then come in. The peace
of God is just amazing! Valerie and I laughed and enjoyed our night together
through an attempted MRI and a CT scan - we chatted up almost everyone
there.
And oddly enough, the family next to us is going through what we
went through last year - optic chiasm tumor w/ cysts. They now
recommend no surgery after seeing Valerie's case and they told them
it could be JPA or PMA after seeing Valerie - so it was wonderful to
see that Valerie has had an impact on the way things are being done
at our hospital now - I was able to talk to this sweet mom (Jillian)
and her husband for a long time - God definitely had a reason for us
being there - we actually had a wonderful time!
Thank you all for your prayers - Richters and Redmonds, thank you for
the meals! - Amber, thank you for the company and yummy snacks and videos
- and thank you to everyone who emailed and called to check on us - and
offered to bring more meals.
Love,
Celeste
Valerie making her funny face late last night right we went to MRI ******
Valerie having fun the night before surgery
Playing peek-a-boo with Amber the night before surgery ------------------Valerie
Grace eating olives just hours after surgery
March 22nd 2006
Valerie and I went to Shands yesterday to get a follow-up
scan and see neurosurgery. The scan looked good - she was so good - she
was perfectly still and said "ride...wheee" as the table moved
back and forth while I rubbed her feet. We went to see neurosurgery and
they said the scan looked good but tried to drain the cyst and could not
get any fluid out - so it could be that the cyst is not full of fluid
(it is difficult to tell what is cyst and what is normal ventricle fluid
since the cyst was in the third ventricle), or the tubing in the reservoir
is clogged with some loose brain gunk (praying that is not the case),
or the tubing is not in the cyst (though I was told it appeared to be
on the scan).
Last night was not good for me - I really was in a yucky place and my
focus was not where it should be. I realized how painful this sort of
thing must be for people who do not know God - who's hope is in this world.
The good part is that I am thankful that God let me see this - as I will
definitely be praying more for other mom's who are in that place of despair.
But Praise be to God! We are enjoying to day (as we should each day God
has given us - as we will not have another chance to enjoy this moment
- it is easy to slip into the world's way of viewing things as how they
ought to be or that we are owed a certain number of years with our children
or that life is too short if it ends at the age of ... - but we DO have
today - and we are going to rejoice in it! We are going to enjoy God and
each other and ALL of the blessings He has given us!
I am no longer going to attach pictures to the emails as they take up
a lot of space in people's in boxes but I will upload them on Valerie's
site (if you are interested).
We have been praying all week about starting chemo again this coming
Monday (which will be Valerie's 2nd birthday!) - we feel like we are supposed
to do it - so please keep us in your prayers - we really appreciate them!
An update on Candace Joy - she is home!!!! You can read all of their
updates on www.candacejoy.org. We enjoyed talking with her mom, Cathy,
at Shands during Valerie's last two surgeries - what a wonderful Christian
woman! Every time I saw her my heart was filled again with joy. Please
continue to pray for the infection in Candace's hip to clear and for her
to continue to gain strength and be eating well.
Love,
Celeste
Valerie Grace enjoying her quilt made by Love
Quilts ---------------------------Some of our new back chicks (35
arrived in the mail this week)
Valerie Grace
a beautiful little girl so tiny and sweet
big loving eyes and roses red cheeks
her mommy and daddy and sisters as well
thinks she's the best so super so swell
a tiny little thing she's just barely two.
running and playing is what she likes to do.
so please lord place your hand on this little child's head
and replace those old cancer cells with new ones instead
please make her well to run and to play
this lord is my prayer I pray here today
Valerie Grace turned 2 today! She woke up in a great mood
- ate some breakfast and we went to chemo day. We decided to just to the
one chemo drug from now on (God gave us 2 big confirmations that that
is what is right). Her blood counts were fantastic today! Totally normal
white blood cell count!
Some good news - the tumor tissue that they have growing at Shands from
Valerie's tumor is being used! We were told today that Shands has been
studying it and now knows how these tumor start and when - so that is
a huge step in finding other treatments in the future. We tried so long
to get that tumor sent to Johns Hopkins - but finally had to lay it in
God's hands after we had done all we could to try to get it moved. And
now we are so glad that God directed that happen - as their findings at
Shands are very exciting. The doctors at Johns Hopkins are continuing
to study this type of tumor too from a slightly different angle - so it
is good to see that Valerie's tumor (Hopkins has a piece of the tumor
in paraffin wax) is being studied to perhaps help other children.
We came home and the girls had many presents and story books they made
for Valerie and were VERY excited to give them too her. She even received
a book from Australia (thank you Diane!). Patrick - thank you for the
yummy ice cream gift certificates, Marie - thank you for the new wagon
and sweet little Fallon Marie for the Wiggle's DVD (she watched it today
at the clinic) - and mom and dad for the cozy PJs, blanket, and stuffed
animals (they came along today too - but she really enjoyed the card!).
Marion, Great-Grandmother Hinton, and Great Grandmother Welch - thank
you for the cards - she enjoyed them all! Shands gave Valerie a little
cake from Olive Garden and her doctor and nurses all sang happy birthday
to her.
Love,
Celeste
March 30th 2006
8am
Valerie threw up last night and again this morning - so
we are headed out the door to see neurosurgery - please pray that we continue
to have a good day regardless of what happens - that our focus stays on
God!
Love,
Celeste
around lunch time:
This is Craig.
Celeste couldn't write an update today because she's in the hospital with
Valerie again. Valerie kept vomiting this morning so Celeste took her
in around 9:00 am. Basically, the reservoir they put in the cyst a few
weeks ago failed, so they're going to try again. She is scheduled for
surgery around 5-6 pm tonight. Of course, that means that Valerie hasn't
been able to have any food or water since 9:00 pm last night. Needless
to say, she's miserable. Please pray for her comfort and Celeste's, since
listening to your thirsty child cry and ask for water and being unable
to give her any is terribly disturbing. She is currently in the PICU but
will probably be in surgery by the time most of you read this.
To top it off, our van broke this morning. I think it just ran out of
transmission fluid, which I refilled today, and it seems to have done
the trick. Nonetheless, we will have to schedule a way to take it by the
shop and have them check it out. So pray for all that to work out as well.
I really felt today like Satan was pushing hard for a victory. I was happy
to recognize this early on and so be prepared not to give him one. My
prayer was to help me not get focused on the things that were going wrong
and focus on the goodness of Jesus. And I'd like to say that did the trick
and so the day got better. But it didn't. Satan decided to turn up the
heat and not give in so easily. And God let him do it. It was a real true
test of my sincerity, but I think I did ok. I can't say I had a glorious
victory, but I do think I robbed Satan of his.
Craig
7pm:
This is Craig again.
I don't remember if i explained this in a earlier update or not, but God
is having a contest with me to see how He can bless me without my seeing
it coming. I have pictures of how I would like to see Him bless me, and
as soon as it becomes "my idea" He crosses it off His list.
He wants all the glory and credit for it. And that's fine by me.
Earlier this week Celeste found out that the doctors at Shand's who are
studying the culture of Valerie's tumor (taken during the first surgery)
have made some breakthroughs in understanding the origin of this tumor
type. They think that they will be able to come with a non-chemotherapy
treatment. Granted, this will take some time and may be of no help to
Valerie, but her case my be the one that helps them come up with a cure.
I didn't see that coming. God sneaked in a blessing on me.
So back to today. I was ready for this surgery. Unfortunately, they are
starting to feel like a normal part of life. I wasn't praying for a miracle,
just for Valerie and Celeste to be comfortable. But He sneaked in a blessing
on me (and them). The surgery was cancelled because at the last moment
(after Valerie was already sedated and prepped for surgery), Dr, Pincus
decided to try one last time to see if the old reservoir would work....and
it did. So Celeste is coming home tonight and Valerie sleeps in her own
bed, with no surgery.
So if you were the one(s) out there praying for a miracle - thank you,
you got it.
Craig
10pm:
Today was a day of me wondering - why do we pray if God
is going to do what He wants anyway. So we were at Shands - they did a
scan - tried to tap the reservoir (nothing came out) - tried to inject
dye to see if the catheter was in the right place (the dye would not go
in) - so off the admissions for another surgery (amazingly - I had packed
before hand and had most everything we needed in the car - which I decided
at the last minute to take even though it involved switching the car seat
out - then Craig tries to drive the van to the bee store and it goes 12
feet and dies) We waited a long time (arrived at 8am - surgery came to
get her at 6pm) - Valerie had nothing to eat or drink since 9pm last night
- but was handling things amazingly well - and took a nap around 4pm -
then wanted me to come in the crib so she could sit on my lap. So when
they came to take her to surgery - they wheeled us both down in the crib
(it was quite a sight, I'm sure). They let me suit up and go into the
the OR with her so she would not be so scared. She sat in my lap and they
asked "are you going to be okay once she goes limp" -I said
"of course" but was not prepared for the feeling - it was quite
surreal. They took her off my lap so I could get off the operating table
and they put her back on and asked me to leave the room. The intubated
her and prepared to make the incision. 5 minutes later I received a call
from Dr Pincus saying he couldn't explain it - but he decided to try the
reservoir one more time and he took out 8ccs of yellow fluid. He then
tapped the shunt just to make sure it was cyst fluid coming out of the
reservoir and not csf - and it was - the reservoir was working perfectly.
He told me they were waking her up and we could go home. Half way home
I remembered that they forgot to do the heparin before they deaccessed
her port - so we turned around, went back, and had them reaccess her and
flush and heparin lock her port.
The amazing thing is that a year ago I would have been really annoyed
with the whole wait - and port issues - but Christ has put such a love
in my heart this past year (a love that can make a prisoner feel free)
that we could not stop smiling and laughing. I enjoyed the trip back into
Shands to fix the port problem as it was more time for me to have alone
with God - praising Him and doing a lot of crying! Valerie slept and when
we got there was happy as we went back up to the PICU. They accessed her
port without any numbing cream and she did awesome! Then we strolled back
down and she said "please" pointing to the MRI building (I explained
to her that God wanted us to go home now and that we could not have an
MRI) - God has obviously put this same love in Valerie Grace's heart!
When we arrived home I asked Valerie "did you have fun" - she
said "yes!" God showed me yes, He does want me to keep praying!
He showed me what love is! When I called my dad and told him the facts
about what all happened - he was so excited and almost crying and said
"God did something great! - I can't wait to one day ask Him how he
did it". My thoughts exactly - was it the wait (was that the exact
time that the reservoir started working - had the surgery been on time
would Valerie now have a large incision on her head?) - regardless - we
saw LOVE!
Love,
Celeste
April 6, 2006
So third time after chemo -Valerie threw up 3 days after receiving it.
All three times it was preceded by hiccups which we were told was a symptom
of the cyst pressing on the brain stem. So, most likely we will be heading
off to Shands (I kept my bag packed from last week - so no rushing this
time).
Please pray that they are able to drain the cyst in the clinic as our
neurosurgeon is out of town this week and I would rather pluck feathers
out of a chicken than have a resident do anything (just joking - no feather
plucking going on over here!)
Seriously, I am doing very well - dancing in the rain of the storm!
Valerie is eating olives right now and feeling great. Craig and I both
comment on how amazingly happy she is - running around tickling everyone
in the house and playing peek-a-boo any chance she gets (even by herself).
About our van situation - another reminder that God is ALWAYS faithful.
I knew this - but at times, we seem to get focused on what we "need"
rather than what we really need.
Craig took our van in to be looked at - I was thinking a new transmission
was needed. I knew that God would prepare the means - yet it was still
a bit of a heavy feeling. Craig filled up the transmission fluid and drove
the van in (it was hesitating and not going in to gear right even after
the fluid was put in). The car place called Craig and said it would be
$144 (what a delightfully low amount as compared to what we were expecting)
- he arrived and the bill said $199 - without questioning it, Craig waited
for the cashier to tell him how much he owed. She said "that will
be $84". Craig asked her if she was sure and she said yes, they had
added something extra on the bill that they did not need to do.
I have realized more and more each day of my life that God will ALWAYS
provide what we need! Had the van not been fixable at a decent price -
God too would have made a way or showed us that it was not a real need.
Love,
Celeste
9pm:
They drained the cyst and then did an MRI. We arrived home just before
8pm.
Thankfully we are home though.
Thanks for praying.
Love,
Celeste (one super pooped mommy)
April 7th 2006
Well, more about yesterday...we had thought that the MRI was scheduled
for oral sedation (as that is what we requested and were told was going
to be done). We waited all day, were in the MRI building at 2pm, then
at 4pm they told us that they do not have access to oral sedation. I asked
for Craig's advice, which was to come on home. I went out to tell the
doctors that we would be going home and saw all of their stuff set up
to sedate her and they said "put her on the table". I told them
"no" not until you explain to me what you are doing and why
this is safe". Well, common sense said go ahead and do it rather
than go home and come back in the morning (the option of not coming back
at all did not cross my mind as I was working totally on logic and not
praying at all about this - picture the table set up with the breathing
mask on it and two anesthesiologists telling you that it is time to start).
So, I went with common sense and not with what my husband or God wanted
- and I paid the price - as did Valerie.
Normally Valerie wakes up right at the end of the scan - but she was not
fully herself until this morning. The recovery nurse asked if I would
stay until she was back to normal - thankfully I went with God on that
one and sat my drowsy daughter in her stroller and went home.
It is the same lesson that I should have learned 10 years ago when shopping
for a mattress with Craig. We had been there for hours and were finally
in line to pay for our mattress. The sales man was being a little rude
and Craig said "let's go" - I said "no", we have waited
so long and we need a mattress. But Craig said "we are leaving".
And we did...and found a better deal somewhere else the next day. I just
have it in my brain that once I invest a certain amount of time in something
that I need to see it through to completion - when that process, rather
than the outcome might be God's plan.
So, all day I have been beating myself up about not listening to Craig
and not seeking God continually yesterday - I started the day off with
God and was kind of coasting along. So I called my sweet friend Amber
this morning, who reminded me that I was giving the enemy two victories
- 1. by not obeying Him and my husband and 2. by not receiving the forgiveness
that I had already asked for and had been given. An old Don Francisco
song came to my ear "even when you do it wrong, and miss the joy
I've planned, I'll never, never, never let go of your hand".
It was a hard and painful lesson that I learned - one that caused my daughter
undue pain and a lot of emotional pain to myself and although sweet Craig
said he was not disappointed in me - I still felt horrible about it and
exhausted.
So once again we are dancing today in Jesus's amazing love - Dave Feather....we
are just letting Him love us and it is so good!
Love,
Celeste
April 10th 2006
Valerie went into clinic this morning and she is starting to gain weight.
We did find out that the MRI showed that Valerie's tumor grew some (I
think 3mm in one direction). Most hospitals call this stable - but our
doctors tend to tell us all the numbers. We had all of Valerie's scans
from this year sent up to Hopkins again last week - so I expect to be
hearing from both our doctors here and up there as to what their suggestions
are. My initial thought (regardless of what they say) is that we are supposed
to stay the course for a while longer. Stable is considered a good response
to this treatment and I think that the growth most likely occurred during
the few months that she was going through all of the surgeries. But, we
will continue to pray that God continues to guide us through this.
And thank you to everyone who has continued to walk with us through this
journey - thank you for your notes of encouragement, phone calls, and
to Emily for the wonderful meals!
Valerie's blood counts were higher this week, so we might all head out
to Cedar Key or somewhere fun tomorrow...home schooling is so wonderful
because we can enjoy this wonderful weather and then focus on reading
and math once the heat and mosquitoes force us to stay inside!
Craig and I had fun this weekend taking down the salt water aquarium
and putting in new substrate and then the 100s of pounds of rocks and
fish...it brought back memories of when we worked in the pet store together
before we were married - thankfully we both consider that sort of thing
fun!
Love,
Celeste
April 14th 2006
Valerie had the hiccups Wednesday night which seems to be an indication
that her cyst has refilled - so we took her in to have it drained on our
way to the zoo in Jacksonville. They were able to get another 6cc of fluid
out. We are looking into some more permanent solutions to the cyst. She
is totally normal though - happy, running, eating well, etc. The zoo was
a lot of fun - the girls really enjoy feeding the birds there. We are
planning a trip to the beach, trying to plan it so that we can have Valerie's
cyst drained before we leave. We will be meeting with the oncologist this
Monday to discuss Valerie's last MRI. I really feel like we are suppose
to do one thing - but am expecting to hear that the doctors have another
plan (or lack of). The surgeon at Johns Hopkins has written us back and
felt that we do need to do something else with the cyst, but that the
current treatment seemed to be working. It will be interesting to hear
what our doctors here have to say. Please pray that we continue to seek
God's plan and not our own or the doctors - that we are willing to obey
Him regardless of the costs.
Love,
Celeste
April 17th 2006
Every doctor we heard from at Shands last week sounded rather grim, saying
"the tumor has grown despite chemo". But as we prayed about
it, we felt that God did want us to continue with treatment, but were
unsure how that would work out.
We met with Valerie's neuro-oncologist today, and she seemed like she
was worried that we would not want to continue treatment (and I was concerned
that she would not let us, when I knew that was what God wanted us to
do). So we both fully agreed that Valerie should continue with treatment.
Currently Valerie has a two week break. We had her cyst drained again
today, and they will be meeting to discuss injecting a chemotherapy agent
into the cyst perhaps as early as this week. First a dye study would need
to be done to make sure that the cyst is intact and is not communicating
with her ventricles.
We are planning a trip to the beach next week (and will have Valerie's
cyst drained right before we leave if we do not do anything with it before
then). We are really looking forward to a wonderful break from computers,
phones, doctors appointments, housework, etc. Please pray that Valerie
continues to do well and that the cyst continues to drain properly. Craig
and I are really looking forward to this - as it will be our first real
vacation as a family
There have been spiritual battles and attacks this past week - doubts
and fears - but all those things always bring us right back to the feet
of Jesus - right back to the place He wants us to be.
Love,
Celeste
April 21 2006
Just to clarify, this past MRI was one of the better ones Valerie has
had. The tumor only grew 3mm in one direction (which is less than 10%).
Most hospitals call this stable. The growth occurred during the two months
that she was off of chemo - this just reaffirms what we felt God telling
us to do - which was continue treatment. Valerie continues to do very
well - and belly laughs almost all day (when she isn't being a bossy 2
year old).
Love,
Celeste
April 29th 2006
We had a wonderful time at Indian Shores beach. We went by Shands to
have Valerie's cyst drained at 8am Monday morning. It would not drain.
This was really unexpected because it had been draining properly. The
doctors sent us with a kit to drain it ourselves - rather unnerving since
this is charged as a surgery (over $350 each time it is drained). The
cyst has needed to be drained at least weekly. I prayed the whole way
down to the beach that we would not need to attempt to drain the cyst
ourselves....and we didn't! It has been almost two weeks now and Valerie
has not had any symptoms from the cyst. We were all able to enjoy a medically
free week.
Courtney's favorite thing was going to the shell shop. Brooke enjoyed
fishing with Craig on the pier (though the fish dropped off the line or
were eaten by birds before they could get them off the hook) and playing
miniature golf and feeding the alligators (legally). Natalie Joy enjoyed
a big shrimp dinner alone with me one night. Valerie Grace enjoyed doing
whatever I was doing - gathering shells, walking on the beach - anything
that did not involve getting in the water (that was the one thing she
did not want to do with me). We drove down to Venice beach to collect
sharks teeth, but found a fossilized bone instead. It was a wonderful
week. We could open the sliding glass doors and look right out on the
ocean and see the sun set each night. There was a man who played the bagpipes
on a pier every night as the sun set. The sound of the waves at night
was wonderful too. The weather was perfect. The thing we did most though,
was feed the seagulls.
We will be taking Valerie in to Shands again on Monday for possible treatment.
Love,
Celeste
Valerie and
Craig at the beach
Brooke drawing in the sand -----------------------Courtney looking for
shells ------------------------Natalie Joy gathering shells
May 8th 2006
Well, Valerie did really well with not having her cyst drained until
we walked into the clinic a week ago. Then her hiccupping started (that
comes right before the vomiting - the cyst is right near her brain stem
and they think that when the cyst fills, it pushes against the brain stem
and causes these symptoms). The neurosurgeon agreed to let our neuro-oncologist
drain the cyst during Valerie's chemo treatment - the hiccupping stopped
and she did really well, up until last Saturday. She threw up again (and
we couldn't take her in because I drove over a screw and Craig was having
tires put on the van on the other side of Gainesville). We ended up giving
her anti-vomiting medicine all weekend and she did really well - happy,
eating, playing, running, etc.
Today I took her in for her second chemo treatment in this cycle (she
will have 2 more, then another MRI and another 2 week break). Her blood
counts were all good and she now is at her highest weight ever! - up until
a few months ago she was below her pre-diagnosis weight. During chemo
treatments Valerie laughs and dances in her seat as she watches a movie
and snacks on mainly cheese and olives. She had her cyst drained again
today during treatment. The doctor from Denver (who is the only one to
publish a paper on injecting the chemo drug into a cyst) is visiting our
neuro-oncologist this week. So they will discuss that option some more
- the goal of that treatment would be to shrink down the cyst permanently
so that she would not have to keep having it drained. The problematic
cyst is rather small. Valerie has another large cyst behind her right
eye (the eye she primarily uses) that actually appeared to have shrunk
some on the last MRI.
We are all doing very well - a little bit of a rough week as far as getting
our focus off of God and seeing frustrations creep in. But Craig and I
normally spend hours at night talking about God and what He has shown
us. This is so important as now we are almost totally out of fellowship
with other believers and have been for over a year now. Craig and I would
love to have any one over for fellowship any evening after 8 - so if any
one is interested, please feel free to email us.
One really special thing that happened this past week ...I had been feeling
rather guilty for not doing much with the girls. We have taken the past
2 months off of school work since the weather has been so nice. We have
not done any scripture memory or anything. Yesterday, Craig asked the
girls if they wanted to sing a song during lunch. They all immediately
sang "Jesus Loves Me" - then Craig sang "Because He Lives"
in his super deep singing voice. Then Brooke said she knew another song.
She sang Psalm 23. It was set to a tune I had never heard. I looked at
Craig thinking he must have taught her this - then told Brooke how beautiful
that was and asked her if daddy had taught her or if she heard it on a
CD. She said "no mommy, you hung up Psalm 23 in front of our potty
last month and I made up a song and have been singing it to myself."
God is so incredibly faithful! I am always hanging scripture up around
the house - but I never thought anyone other than myself noticed. I will
always remember that moment of hearing my sweet Brooke sing every word
of Psalm 23.
Love,
Celeste
May 20th 2006
Well, it happened. Someone in the house became sick - me. We are praying
that it is just food poisoning and that no one else will catch this nasty
stomach bug. I was totally out of commission on Thursday and Craig had
to come home after lunch to help me out. Brooke came in Thursday morning
to let me know her favorite chick (a white faced Spanish pullet who was
extra sweet - which Brooke was planning to enter in the chicken show next
year) was missing. I called our neighbor to let her know. We quickly received
a call back letting us know that their jack russell had just walked up
with the chicken in it's mouth. Determined to turn our lemon of a day
into something sweet - I let Brooke know and asked if she wanted to try
to mummify the chicken (since we just started reading about ancient Egypt)
- that way she could still try to enter it in the 4H show, just not in
the chicken part of the show (a sick thought). She thought it was a great
idea and there were no tears over the dead chicken, in fact, all four
girls looked at the dead chick which had been nicely placed in a shoe
box by our wonderful neighbors. So as we are walking back in, we pass
by the bones of Gina the guinea pig which they had just recently dug up
(after reading about archaeologists)....this homeschooling stuff is great
fun, but not so kind on an already upset stomach.
Friday was better. We were called first thing in the morning and were
asked to bring Valerie in for a dye study so that she could have the chemo
agent injected into her cyst as soon as next week. Craig and I still had
some unanswered questions about the procedure, and seeing that I was still
not feeling 100%, we decided to just take her in to have her cyst drained
again and not do the dye study (waiting as an add-on for a CT scan is
not always a pleasant experience). So I dropped the girls off at Craig's
work and took Valerie in to have the cyst drained. She really seems to
enjoy being there and gets a great laugh out of Dr Pincus trying on her
necklaces and Natalie Joy's purple clogs (when she came with us the week
before). Valerie has not had any symptoms from the cyst, we have been
going in to have it drained weekly to keep symptoms from appearing. Valerie
continued to gain weight again last week, although her white blood cell
count was lower. As long as she feels well, and God doesn't tell us otherwise,
we will be taking her in for her last treatment in this cycle, then she
will get a two week break and have another MRI on June 5th - with oral
sedation to avoid the horrible experience we had last time. We are also
waiting to find out if the dye study can be done during this MRI.
Please pray that no one else gets sick - that I am feeling 100% better
soon, and that we continue to seek God in all things!
"Be joyful always; pray continually; give thanks in all circumstances,
for this is God's will for you in Christ Jesus."
I Thessalonians 5:16-18
Valerie with Papa Ace (Celeste's dad) May 13th 2006
May 21st 2006
It is around 2am and we are NOT dealing with food poisoning here. Just
as I thought, Monday - a boy throws up in the chemo clinic and has a fever
- Thursday, I throw up all day - 2am Sunday - Brooke throws up from her
bed to our bathroom (on the other side of the house - note to self ....never
get light colored carpet again - or carpet at all for that matter).
I am at a loss for what to do other than keep praying that Valerie does
not get this. I lost 5 lbs in 8 hours, she just cannot afford to weight
right now. Brooke is taking her second bath and I just finished carpet
cleaning two rooms and a long hallway and cleaning the hard floors in
the other 3 rooms. Brooke is already looking better though - and thankfully
I am well enough to take care of her now.
Looking back, I am thankful no one took us up on our open invitation
for fellowship, so hopefully we won't spread this bug to anyone else.
Love,
Celeste
Well, at 3am, Valerie woke up saying "bed....yuck" - she had
thrown up. By this time Brooke had just fallen asleep in a chair. Then,
just as I had finished washing the 5th load of laundry at 4am - Courtney
is throwing up (in one room, thankfully). Brooke has been doing well since
3am, Valerie is doing very well since 6am, and Courtney is still feeling
sick. And our two non careful loved ones (Natalie and Craig) are doing
great - nothing yet. I managed to get in 15 minutes of sleep between 5:30-5:45
- other than that, I was snuggled on the couch with Valerie who was watching
a Wiggles DVD and yes, bopping up and down with the music (just another
bump in the road for her).Brooke and Courtney look exhausted and aren't
moving much, but the rest of us are full of energy and able to take care
of those who aren't.
Thanks for praying. It was actually a bit of a relief once Valerie got
sick, because I could stop worrying about who touched what and getting
everything washed right away.
Love,
Celeste
May 22nd 2006
Brooke, Courtney, and Valerie were still sick last night. Fevers and
all. Courtney seems to have it the worst (still unable to keep anything
down this morning - but quiet and smiling). Everyone slept through the
night though. We knew it was best not to take Valerie in to the clinic
this morning - so it has been a peaceful morning at home. God has been
so present to us through this little illness, and yesterday was actually
a really good day. The sick girls were pampered and Natalie Joy was thrilled
to have lot of attention yesterday while the other girls were resting.
She made cookies with Craig and played play dough and watered the plants
with mommy. When Natalie cracks an egg, she taps it twice, then squeezes
it open with one hand (and doesn't get shell in the bowl!) - it is so
cute and she LOVES to help.
God helped me realize some stuff yesterday (things He has already taught
me, but lessons too soon forgotten)- that it is not like we have lost
any friends or that we should be lonely here - it is that there are new
friends, that we have been planted in another place for now and things
are different but good. We have come to know people who we would not have
otherwise met, we have been able to share Christ's love with others in
a way we wouldn't have been able to before, and we have been encouraged
greatly in return. We have cried many tears and rejoiced much - tears
over lost souls (and the pain we see from that) and joy in the midst of
turmoil because of the greatness of our God. Thank you to everyone who
has reached out to us this year, to those who have prayed for our little
Valerie Grace and for us (we felt your prayers often), and thank you to
our other BT friends and your wonderful sense of humor.
Love,
Celeste
May 24th 2006
We are heading in to Shands Hospital. Valerie is not feeling well - started
vomiting again and her ANC is 230 - this means she is not able to fight
off infections. It has never been anywhere near this low before. I had
just unpacked my hospital bag thinking we were done with overnight stays.
I really feel good that this is what we are supposed to be doing though
- even though we were totally unprepared.
I doubt I will have any computer access, but maybe Craig will be feeling
well enough to send out an update - He and Natalie caught the virus the
night before last.
Love,
Celeste
9pm
When we called the doctor today - Valerie was not at all herself, she
was throwing up - coughing and just not acting right at all, then she
threw up clear mucussy stuff (sorry, I know that is gross) - then within
an hour she was eating an apple and cheese and doing great. Craig had
started praying right after the first throwing up. We took her in anyway
- Myself and the four girls. They put us in a room and we talked to several
doctors. The final doctor gave us the option of staying the night, having
her cyst drained, (or both) or going home. We chose to go home (especially
easy since Craig came to pick up the girls after he got off of work and
Valerie was crying for Daddy and Natalie). So we are home, Valerie hasn't
eaten much, but is sleeping and went to bed happy and playful.
Thank you for praying!
Love,
Celeste
June 2nd 2006
We met with Valerie's neuro-oncologist last Friday. We discussed putting
chemo into the cyst at length. In the end, we all three (Craig was there
too) felt that it was not something we should do now - though our doctor
was willing to do it. The point of the chemo would be to scar the cyst
wall and basically fuse the wall together which would prevent it from
refilling. This is done frequently with another type of brain tumor -
but with Valerie's type of tumor it has not been well documented (one
published paper only). Typically the cyst that Valerie has, has a thinner
wall which could more easily break causing chemical meningitis - not that
this really matters much, ultimately we both felt God saying "not
now" . Some really good news is that we have been having Valerie's
cyst drained weekly - and each week they have been getting about 5cc of
fluid out. The last two weeks this amount has dropped significantly, so
now we are going to skip next weeks cyst draining visit. Perhaps this
is why we really felt God telling us the chemo in the cyst was a good
thing, only to hear something totally different and have lots of new questions
three weeks ago (before we spoke with the oncologist).
Valerie continues to do very well - and we continue to be amazed at all
God is showing us - how we had these grand ideas of how God "works"
before all of this and have been amazed at how wrong we were - and how
good our God really is.
I was interviews a couple of months ago by the Seattle Times newspaper
magazine for an article
they were putting together about Cranium Games. The girls were tickled
to see their names in the paper, and I was a little surprised and pleased
with the quotes they decided to put in, as the bulk of the interview was
related to a side project we had been doing.
Monday at 12pm, Valerie will go in for another MRI - since the last scan
was a bit questionable, we felt that this is important to do before doing
any more treatment. Please pray that we see great things. Valerie is doing
very well, even learned how to climb out of her crib, which we promptly
lowered the mattress on. She has a wonderful twin bed in her room, but
is still very attached to her crib and is sleeping so well at night and
nap time, that we haven't moved her out yet.
Love,
Celeste
June 7th 2006
We found out on Monday that Valerie's scan was stable - which in the
world of benign brain tumors is actually a positive thing. The cysts appeared
a bit smaller and we will not be taking her in this week to have the small
cyst drained as long as she has no symptoms. Valerie has gained back all
of her weight from when she was sick (most likely from eating 2 cups of
heavily buttered rice - her new favorite food). She is also eating about
2 cups of blueberries a day.
We still have no clue as to whether or not Craig's job will continue
or not - I am not sure if we will have a weeks notice, a day, or what.
But strangely enough (for me) I am not that concerned as I know God will
provide every need we have - and if it is not provided - then it was not
a need at all. The girls and I had a long discussion about this last week.
Courtney (the great debater who is sharp as a tack) kept posing questions
like "okay mom, you are in the desert and you have no food...is God
going to drop down a package of snacks?" I went on to explain that
if He still had work for me to do here on earth - then He would provide
food or sustain me some other way and it is the intimate relationship
with Him which makes us truly not hungry.
For your Father knows the things you have need of before you ask Him.
Matthew 6:8
And my God shall supply all your need according to His riches in glory
by Christ Jesus.
Philippians 4:19
Brooke, Courtney, and Valerie Grace
June 30th 2006
Valerie Grace is doing very well. Her cyst seems to have healed and she
is looking more round (all of that buttered rice and blueberries). We
had added back in one of the two drugs she is on - but once again have
dropped it. I mapped out how much longer she would have on this treatment
as we have felt God showing us a new opportunity He has for us - then
I quickly remembered - this is not mans protocol Valerie Grace is on -
this is what God has told us to do today and we don't need to go making
plans. So we continue to pray daily for all things - our main prayer is
to continually abide in Christ.
There is something Craig said that has rung out in my ears for a year
now. "One of the most prideful things any one can say is 'I deserve
_____'." At the time I agreed 100% and felt certain that I would
not even think such a thing.
I have known that I do not deserve a healthy life and family and that
I do not deserve wealth and that true happiness does not come from things
on this earth. But the newest lessons that God has been teaching me are
- I don't deserve to be treated fairly (as the idea of "fair"
only comes about after believing that one deserves something). I can,
however, choose to love, to help, and to treat others well. God continues
to open my eyes to new lessons, and I am still learning.
"Therefore, as God's chosen people, holy and dearly loved, clothe
yourselves with compassion, kindness, humility, gentleness, and patience.
Bear with each other and forgive whatever grievances you may have against
one another. Forgive as the Lord forgave you. And over all these virtues
put on love, which binds them all together in perfect unity" Colossians
3:12-14
So this new opportunity is, well - I don't exactly know yet, other than
we tapped gently on a door and God flung it opened and took hold of our
outreached hands and pulled us in. Craig has a plane ticket to go down
to Ecuador in September to see an orphanage. The girls and I will be sending
off for our passports this week - but currently feel God telling us to
stay home this trip and let Craig explore the area first. The girls are
a little disappointed (I imagine they were wanting to tame a capybara
while there). We have been busy trying to learn Spanish - hearing Natalie
and Valerie repeat things is really cute - up until yesterday, Valerie
refused to speak Spanish to Craig. He would say "Hola Valerie"
and Valerie would say "no". But yesterday she was saying "hola"
(sounds more like 'oh' though coming from her two year old mouth). We
had a great visit from Craig's cousin Steven this week (who we had not
seen in many years!)and were able to get some language advice. Steven
is fluent in several languages - (at times I think my brain just doesn't
have room - I am hoping that the Spanish will push out the French knowledge
to make room).
Still no news on Craig's job - but the whole situation has been a bit
of a victory for me and I am excited about seeing God work it all out.
Love,
Celeste
July 3rd 2006
Valerie went in for chemo again today. We had decided not to add in the
other drug - but if we decide to at a later time - that it will be at
25% of the normal dose. I confirmed this with 2 doctors and had them call
our doctor. They then faxed the prescription for the chemo. Amazingly
fast - the chemo shows up and within an hour of seeing the doctor (2 hours
after being there) we are almost done (this is a record!). So then the
nurse comes up to Valerie with a syringe. I questioned it as he was getting
ready to put it in and found out it was the drug we were not doing. He
went to check with the doctors who loudly said "listen to mom - she's
right". Now I know why I never felt comfortable even taking a 30
second potty break during chemo day. No harm done - just another reminder
that I am not being too careful by not leaving her side for a minute (that
drug takes less than 15 seconds to administer).
We had a wonderful visit this past weekend with a family who's youngest
daughter has the same type of tumor that Valerie has. Not only that -
but if you were to look at a mirror image of Valerie's MRI it would look
like Kate's MRI. They both have a large cyst behind one eye. Kate is just
a few months older than Valerie. Kate's mom bought them cute matching
outfits (seen in the picture below). To make things even more strange
- Kate's mom used to live in Ecuador. One of the questions I have been
asking God since Ecuador came up is "but what if one of us has to
have our appendix out while we are there?" I had emailed Basi (Kate's
mom) and asked her to pray about Ecuador - it was at that time she emailed
me back and told me she used to live there and said "by the way,
when I was there I had to have my appendix out and the doctors who I have
told that to in the US have commented on what a wonderful job the surgeon
in Ecuador did." I never mentioned the word appendix in my initial
prayer request email. And Basi told me this weekend that she felt rather
silly putting that in her email - but felt she was supposed to.
Please continue to pray for us - that our eyes stay focused on Jesus
- that we do not soon forget all of the wonderful lessons He has taught
us through this.
Love,
Celeste
Valerie and Kate -----------------------------------------------------------Valerie
getting a ride on Daddy's back
July 4th 2006
This is Craig.
OK, some of you are asking yourselves (and us), "What's this Ecuador
talk all about?". We've been talking about it for a while, so it's
not new to us, but I thought it would be amiss to continue talking about
it without giving a fuller explanation. The following is an excerpt from
my journal concerning the "Ecuador thing".....
Due to the fact that God blessed me with a bad memory, I have been encouraged
to document the events leading up to our potential decision to join a
ministry at an orphanage in Ecuador. My goal is to be able to later sit
back and read this; part as a testimony to God’s plan and faithfulness,
and part as an exploration of discerning God’s call and to see whether
the events at hand were God’s doing or coincidence mixed with wishful
and selfish thinking. Let me preface this by saying that God has made
it clear that I am not to analyze Him. So I will try not to approach this
from that direction at all. Secondly, I don’t want to approach this
as God’s will for my life, as I have come to know that His will
is for me to have fellowship with Him on a continual basis regardless
of all else, to walk and talk with Him as a man talks with his friend.
And I can do that either as an entomologist in Gainesville, Florida, or
in the jungles of Ecuador equally well.
Let me start by saying that the introduction to this ministry opportunity
did not come at a time of spiritual height, as I always assumed it would.
But the consideration of it has brought me into closer fellowship. It
started when two friends of ours came over to our house to say goodbye
to us. He and his wife have been among our closest friends for many years
while he did his residency at Shand’s hospital in neurosurgery.
They are moving to Georgia where he will practice and they will have a
ministry to college students. The subject came up of my job. My post-doc
will expire in about two months and they wanted to know my plans. Well,
I didn’t have any. There was talk of extending my post-doc two more
years, so I figured that’s what would happen. Hooray for the status
quo! We discussed how I was pretty much dissatisfied with my work but
that how I was unable to imagine any career that I would like for anything
more than a brief season. I asked what job they could picture me in (a
question that most people will not answer for me) and I was told, “I
can see you working in an orphanage”. Needless to say, this was
quite unexpected. I had never for a moment considered such a career. I
had had thoughts of some ambiguous ministry in Costa Rica that involved
me owning a nice piece of tropical rainforest and maybe reaching out to
the unsaved natives when I wasn’t busy enjoying my life, but never
an orphanage. I laughed about the idea and reminded my friend that Celeste
and I didn’t particularly like other people’s children (Celeste
used to hire people to work the church nursery for her when it was her
turn) and that we were viciously over-protective of our own children.
His reply was, “That’s what would make you so good at it”.
We talked a little more and decided to look into short term missions,
which was an idea we had already thought about. Celeste emailed a friend
of hers that has several connections with missionaries and mentioned the
orphanage thing to her. She called back immediately and said that, just
12 hours before, she had received an email from a missionary that she
had visited in Ecuador who was asking her to pray for God to raise up
a couple to help her run the orphanage she has there. The orphanage is
in Shell, Ecuador between the Andes and the jungle. This woman takes in
abandoned and disabled children, usually dropped off by the Indians whose
tribes will not accept them. It is the only orphanage in the area and
before she started it, the fate of disabled children was for them to wander
off into the jungle and die.
I don’t know how to explain our reaction to this, other than to
say it just felt right for us both. But it seemed too good to be true.
After all, wasn’t ministry supposed to make you miserable? I wouldn’t
have admitted it, but I thought so. And when I say it sounded too good
to be true, I later discovered that that too was a matter of opinion.
We were excited about the prospect of this ministry, but I had been excited
about Costa Rica too, and so I figured they must be in the same category.
The category was: things I’d like to do for fun and still be able
to pretend I was serving God (because serving God, by definition, cannot
be fun). They both enabled me to flee from the temptation of worldliness
that I am so bad at resisting, be around Latino culture, and enjoy the
beauty of the rainforest – all things that my flesh wanted…or
so I thought. What if God was onboard with my fleeing from worldliness
like Joseph fled from Potiphar’s wife? What if my love of Latino
culture was a burden that God put there? What if God wanted me to enjoy
His creation and so put a burning love for it in me? Maybe so, but I could
still chalk to all up to possibly being my flesh, because who in there
right mind wouldn’t jump at such an opportunity? I quickly found
out that those who wouldn’t jump made up a very long list. Nearly
everyone’s reaction to that question was, “Not me”.
That really shocked me.
But because I was excited about it, I decided to wrestle God about it
and take up a strong skeptical stance. “OK, God. If you want me
to do this, prove it. You know I’m more than willing to go, but
I don’t want it to go because I want to go, I want to go because
You want me to go. So the burden is on You to work out the details.”
We went ahead and contacted Patti Sue, the lady who runs the orphanage,
to get some more information. She suggested that we come down and visit
in September, which I am going to do. And there are a few details that
God may have already been working on. Most mission organizations wouldn’t
touch us with a 10 foot pole. I have no theological training, no orphanage
training, don’t speak the language, and have a daughter with a brain
tumor. As it turns out, the organization that supports the orphanage is
one of the few who consider God’s call a trump card to all those
things. The man who runs the organization just happened to be driving
from Orlando to Kentucky and stopped by our house to meet with us last
week. Lots of little things that could be God’s hand…but I’m
holding to my skepticism.
To me, the main obstacle remains. How do you take a two year old with
a brain tumor into the Amazon jungle? Valerie is still on chemotherapy
and will be for at least six more months. After that, they usually move
on to different chemotherapies until they are old enough for radiation,
but none of these have ever been shown to be an end of treatment. The
tumor is treated as a chronic disease, usually until one of the treatments
ends up killing the child. But untreated, the tumor usually will continue
to grow and cause a whole cornucopia of other problems. So taking her
to Ecuador is certainly an obstacle, one that is impossible for me to
overcome. But there is a part of me that thinks God wants us there.
I feel a little like Abraham. God told Him that Isaac’s sons would
be like the sand on the seashore. Then God told him to kill his son. We
know that Abraham believed God. We know that he knew the promise about
his son would be fulfilled. So in killing Isaac, Abraham knew he was going
to get to see a miracle, he was going to sit back and watch God raise
him from the dead. Now I don’t know how God will work things out
with Valerie. I don’t know if He is planning on healing her, or
providing treatment for her in the hospital at Shell, or letting her die
before we go down. But I feel like I’m going to see Him solve what
to me is an unsolvable problem. That is, of course, if He wants us to
go. We have not discounted the possibility that all of this was just an
object lesson to remind us that serving Him does not mean misery, that
there are opportunities out there to serve God that would be full of joy
and fulfillment. But there are many parts of this that feel like God is
doing something supernatural, and I want to be a part of it.
,,,So I hope that clears things up a little. We are still waiting to hear
or see something from God. Please pray that we won't have blinders on
that would make us miss His answer.
Craig
July 11th 2006
Valerie just finished another 4 week cycle of chemo on Monday. The forth
week is normally delayed due to low blood counts, but her counts were
very good this week (for someone on chemotherapy). She did not lose any
of the weight she had gained. Prior to June, she would not eat Monday-Thursday
any more than a 1/4 cup of food after chemo. But once our blueberries
were ripe, she kept eating and eating - now they are gone, but the figs
are ripe, so she settles for them. Valerie will have at least a two week
break from the clinic.
Craig was told last week "your position was scheduled to end on
July 10th" (earlier than he or his boss thought). Then he was told
they temporarily extended it until September and will try to get more
funding for another year.
School stuff is going well with the girls and I think Brooke is going
to learn Spanish more quickly than we are (with a heavy southern accent
though). Craig placed a "no new pet" rule on the house, and
we already have 2 large empty tanks moved out to the barn.
I have been amazed this week at the blessings God has provided us (especially
me). I have become someone I really don't recognize. I have been more
patient, more flexible...a lot more like Craig and a lot more like Jesus
wants me to be. It has been a real victory and one for which I can not
claim credit. I have been thinking of some people who have grown closer
to the Lord though knowing of Valerie, and it has been really interesting,
because had that tumor been gone the first week after diagnosis I would
have never met these people - and it wasn't a miracle of healing that
brought them to that relationship with God - it was the love and peace
that only God can provide in such a difficult situation. There have been
times in my life where I have said "Lord, I am willing to go through
whatever, as long as it brings glory to You and brings me closer to You."
There have also been brief moments of "no wait!" - but He continues
to provide comfort even in those fearful moments, letting me know that
I will not be swallowed up by the waves. This week has been filled with
many many tears of joy.
Love,
Celeste
July 21st 2006
With this last round of chemo being over, we felt we were supposed to
have another MRI done. The earliest appointment the doctors could get
us was mid September. I called up our friend who works in the MRI building
last Friday (she does the actually administers the sedation for Valerie).
She had an opening at noon. This meant Valerie would have to go without
food all night and upon waking up would not be able to eat anything until
the MRI. The girls helped me clear the house of food and water cups (it
is amazing all of the places in our home where pretzels can easily hide).
We did lots of painting, playing outside in the sandbox, and finally a
long bath to help the time pass by quickly.
Valerie did great for the MRI and woke up right away after it was finished
and quickly ate up the chicken nuggets Craig brought by for her. The three
of us then went down to radiology to pick up a computer disk of the scan
so that we could get some sense of what was going on. The small cyst appeared
to be gone and the large cyst looked about 1/2 the size it was and the
tumor looked the same or maybe slightly smaller. Monday evening we had
a message on our phone letting us know the report said the tumor was slightly
smaller. I called again this morning to talk to someone about the other
part of the scan. It seems that the problematic cyst is gone and that
the tumor has necrotic areas (which is a really good thing) and that it
is smaller.
This is our first real two week break this year! Up until now, we were
going in for chemo or to have the cyst drained weekly. Valerie still has
the reservoir going to I assume the cyst wall. We were told that they
do not normally take reservoirs out unless there is another reason to
do surgery as there is an infection risk in taking it out just for the
sake of not having a small bubble under the scalp. Valerie is doing very
well and we are all delighted at the good news we have received (especially
Brooke who has been praying with us for this tumor to shrink - she has
offered many praises to God for this latest news).
The girls and I have been enjoying our school time, as it is really too
hot to enjoy much of anything outside. Which brings up our rooster situation
- once again we have too many cute roosters (most are tiny little fluff
balls). I know it is a long shot but if anyone is interested in having
a free rooster (or ten), I can drive them any where locally.
Love,
Celeste
We have been studying Greece and talked about the first Olympic games
- we decided to have our own Welch family games. Here are pictures from
our long jump competition. Valerie Grace is the Referee (and managed to
add an increased difficulty level to the competition)
July 31st 2006
Valerie and I went into Shands today. Strangely her ANC was too low (this
is basically white blood count stuff) to have chemo today. It was good
for her last chemo day 3 weeks ago and then she had a two week break.
But she is feeling great and our once picky, yet healthy, eater is now
eating homemade burritos and Uncle Roger's mom's recipe for chicken and
mushrooms (her new favorite food). Her energy level has increased from
what we thought was a normal level. This can be seen as she runs down
the hallway and then quickly climbs up on our bed, the couch, or whatever
else she can find.
Fifteen years ago, I was on my way to NYC - starting a new chapter in
my life at Parsons School of Design with a very nice scholarship. I was
young, single, and yet very unhappy - but I felt like I had a plan for
my life. It was a step to the next "big thing".
Here I am, fifteen years later, living in a small town and recently discovered
the ease of being able to open my kitchen window and throw out the left
over food to our 40 chickens. Such a small thing that had me laughing
up a storm as I thought of how different I am. Craig quickly pointed out
that this is a very "redneck" thing to do, rather than some
great discovery - but continues to love how easily amused I can be.
I have no plan for my life. I enjoy the mundane tasks that come with being
a stay at home mom of four young girls as my day is interspersed with
such moments of joy and pure innocence that fifteen years ago would have
easily been overlooked or even looked at as an interruption to "my
plan". I have never been happier.
Craig and I were both talking last night about how much we have felt
the prayers from so many of you. We thank you so much for lifting us up
in prayer over the past 18 months.
Love,
Celeste
“You’ve seen people treat this world like it was a permanent
home.
It’s not. You’ve seen people pour time and energy into life
like it will last forever.
It won’t. You’ve seen people so proud of what they have done,
they hope they will never have to leave—they will.
We all will. We are in transit.”
Max Lucado
August 15 2006
There are these two separate places that I can be - this place of total
dependence on God - this place where no matter what comes my way, life
is not just bearable, but unbelievably enjoyable because my eyes are 100%
on the Lord. The other place is one of knowing in my head that everything
is okay - but honestly, the challenges in life become the focus and my
eyes are not on the Lord - I know He is there - I am just totally looking
at the wrong things. It has been a difficult week - not just because of
the difficult circumstances of having a daughter throwing up from chemotherapy
(this is the first time this has happened), no running water, and a suspected
bad septic tank on the kitchen/laundry area - but because of not keeping
my eyes on Him. Honestly, what do those little things matter in the big
picture of things - yes, they are inconveniences, but really not a big
deal (except that I chose to make them one). Thankfully, Valerie seems
to be feeling a little better, thankfully I had plenty of drinking water
stored up in the RO tank under the sink, and thankfully the water was
back on after lunch and I was able to run it for a while outside to clean
the line and then clean up Valerie. Thankfully I have a working septic
system on the rest of the house. Thankfully I was able to get the coyote
to drop a chicken out of it's mouth yesterday morning as we were heading
off to chemo day. Just a really small list of the MANY things to be thankful
for.
We would greatly appreciate your continued prayers for us - that we continue
to keep our eyes on Him - so that He can continue to guide us through
this adventure of life.
Love,
Celeste
When you pass through the waters, I will be with you; And through the
rivers, they shall not overflow you. When you walk through the fire, you
shall not be burned, Nor shall the flame scorch you.
Isaiah 43:2
August 25 2006
Valerie Grace is doing very well. She just had her 3rd round of chemo
in this cycle. For the first time, she threw up while we were there. Thankfully
I brought an extra shirt for her. Valerie threw up before chemo even started
while eating olives. I have come to think that the vomiting is caused
by a strong gag reflex she has, as it only happens now when she is eating
and right after she gets something stuck in her throat - then she goes
right back to eating more and is fine. It seems that the vomiting episode
last week was not related to the chemo either.
Her new favorite food is potatoes - french fries, tater tots - anything
made out of potatoes. She has started volunteering to make dinner at night
too - but says she wants to make "chocut" (chocolate) for dinner
- so far we haven't had any chocolate dinners though.
Craig is no longer going down to Ecuador with only Patti Sue (the woman
who runs the orphanage). He will be joined by our good friend Dave Feather,
3 teens, plus the father of one of the teenage girls. This was not our
original plan, but it is clearly God's. Some will be serving in the orphanage
and I believe one will be doing street evangelism and one working in the
hospital. We have been in contact with a family who is wanting to adopt
one of the little boys at the orphanage and Craig will be able to take
down some clothes that they bought for him. Craig is looking forward to
going and starting to feel a bit guilty that I am not going this trip
- it is a bit disappointing, but we know it is the right thing for this
trip. We would appreciate your prayers for this trip - that God would
be glorified through each of the people going down and that it will be
a life changing experience for them all - also for wisdom as to what God
wants our part to be in serving with the orphanage in the future.
If you are interested in reading more about the orphanage - the website
is www.lacasadefe.org .
I have been forced to slow down a bit after getting a very sore throat
two nights ago. I took a home strep test and I don't have strep, but we
(the girls and I) did drive to the pharmacy to pick up a nasal spray form
of Valerie's medication (drive thru pharmacies are WONDERFUL). The other
form of her medicine is a Rhinal tube which I have to blow into her nose
(it just makes sense that would be an infection risk if the person blowing
is sick). Praying it is just allergies or something mild.
Love,
Celeste
August 30th 2006
Valerie Grace finished her last round of chemo this cycle. No more vomiting
(even without the anti-nausea medication) - I think it was all about eating
olives that had not been cut up. She will now have 28 days off (from the
chemo day last Monday). This is our longest break since starting. We decided
to take off an extra week since normally her blood counts are not back
up to normal the first week we normally start back. Also, that would be
the day Craig is leaving for Ecuador - so we decided that it would be
best to wait a week. The oncologist agreed fully. I am finally getting
over my cold and thankfully no one else has any signs of it.
There is something more wonderful about spending a day with God in the
midst of a difficult situation (or rather one that would be difficult
without being in Christ), than living in a mansion with a "perfect"
life or on an island vacation without a care in the world. There have
definitely been days (chemo Mondays especially) where I have seen every
annoyance, every mistake, everything possible to gripe about - but thankfully,
most of them have been wonderful days, even more wonderful than a "typical"
day. There is something great about living out a day with a completely
transformed heart - where no matter what happens - the day is great because
I am there, spending it with God. I am not wishing for difficult days,
yet I can clearly see the light much brighter now. I have seen life more
clearly this week, I can't fully explain it - but it is good.
Below is something that I read last summer - it really spoke to me. It
is from My Utmost for His Highest.
Love,
Celeste
WHAT DO YOU SEE IN YOUR CLOUDS?
"Behold, He cometh with clouds." Revelation 1:7
In the Bible clouds are always connected with God. Clouds are those sorrows
or sufferings or providences, within or without our personal lives, which
seem to dispute the rule of God. It is by those very clouds that the Spirit
of God is teaching us how to walk by faith. If there were no clouds, we
should have no faith. "The clouds are but the dust of our Father's
feet." The clouds are a sign that He is there. What a revelation
it is to know that sorrow and bereavement and suffering are the clouds
that come along with God! God cannot come near without clouds, He does
not come in clear shining.
It is not true to say that God wants to teach us something in our trials:
through every cloud He brings, He wants us to unlearn something. His purpose
in the cloud is to simplify our belief until our relationship to Him is
exactly that of a child - God and my own soul, other people are shadows.
Until other people become shadows, clouds and darkness will be mine every
now and again. Is the relationship between myself and God getting simpler
than ever it has been?
There is a connection between the strange providences of God and what
we know of Him, and we have to learn to interpret the mysteries of life
in the light of our knowledge of God. Unless we can look the darkest,
blackest fact full in the face without damaging God's character, we do
not yet know Him.
"They feared as they entered the cloud . . ." - Is there anyone
"save Jesus only" in your cloud? If so, it will get darker;
you must get to the place where there is "no one any more save Jesus
only."
September 5th 2006
Hello,
This is Craig. I haven't written an update for a while and I had a new
thought this weekend that I wanted to share. For a long time now, at least
since Valerie's diagnosis, probably longer, I've struggled with what life
is all about. And I don't mean life in general, but an individual life.
What's the goal? How do you determine if the purpose of an individual's
life has been fulfilled? My answer has always been, to some extent, salvation.
If a person has come to accept Jesus Christ as their savior, then they
have eternal life and their existence has been successful. But what of
those whose faith is marginal and who never really serve God? What of
children who die before having the opportunity to know God? What about
what the Bible does and doesn't say about all this?
Well we were at Disney World with the girls this last weekend. (I'm
not a big fan of Disney World in general and wasn't looking forward to
the weekend, but figured the girls would have fun, and they did.) It was
a free weekend put on by a support organization for children with cancer
and their families. It was very nicely done and I actually enjoyed it.
Anyway, Valerie slept in bed with either Celeste or me each night. On
the night she wanted to sleep in my bed, I was awake watching her sleep.
I started to ask myself, "What is the unit of life and how do you
measure its fullness?" Here was this beautiful little girl, who we
didn't think would live this long, doing so well now. Would she live to
be five, ten, thirty, ninety? At what age would her life have been "successful"?
I recently was scanning the internet for news stories from Ecuador when
I read about the death of Maria Esther de Capovilla, the world's oldest
woman, who died at the age of 116. Now the article didn't say much else
about her, but was hers also the most successful life? Were her 116 years
more valuable than John Wesley's 88, or Hudson Taylor's 73, or Dwight
Moody's 62? What is the unit by which to measure life? The answer is glory.
This is not some great spiritual revelation, although I suppose it is
in part. Everyone in the world measures life by glory. God made us in
His image, and part of that image is manifest in the seeking for glory.
Everyone likes to make a name for himself. Everyone wants to be remembered
for something. We give great honor to athletes, heroes, leaders, artists,
authors, and celebrities who have achieved glory for themselves in their
particular field. Glory is the result of natural abilities combined with
hard work, we honor that and God does as well in the Bible, to a certain
extent. But there are two kinds of glory: the glory of man and glory to
God. They are quite different.
The glory of man, as stated above, is the result of hard work, talent,
and perseverance. It is what almost all people in the world whose names
you would recognize have achieved. (Although in our society today, we
have also made celebrities of a number of people who have not so much
strived for glory as they have become infamous for their foolish, lewd,
or criminal behavior.) Some of these people's glory last only for a week
or two and then they are forgotten, others retain their glory for generations
(Shakespeare, Einstein, Michelangelo). But all of their glory is eventually
gone.
Glory to God is different in a couple of ways. First it is eternal.
The glory that man achieves for God will never be forgotten, because God
doesn't forget. But the best part is, glory to God is passive. Where one
has to work and strive to get glory for oneself, God will use you to give
Himself glory - but you still get credit for it. God can use anyone to
generate glory, be they willing or not. God even uses the Devil to bring
Himself glory. But when a child of God is yielded to the will of God,
he will be used greatly by Him to generate tremendous glory for God, whether
he is aware of it or not.
Which brings me back to my original statement, that the unit of life
is glory. Our lives can and will be measured by glory. Men will measure
us by the glory we achieve for ourselves, and God will look at the glory
we allowed Him to receive through our yieldedness to Him. Although Valerie
may not ever have the chance to bring glory to her own life, God can passively
use her to bring glory to Himself. He can heal her or let her die, and
still He can be glorified through it all. And we have an opportunity to
be a part of that by yielding to Him. He is able to use our faith, our
attitudes, our prayers, and our responses to bring Himself glory. And
that is a life not wasted no matter how many years it lasts.
September 9th 2006
Valerie Grace had a weird moment of crossing her eyes this week, so I
decided to take her in to see the eye doctor. I think it had been over
six months since I had taken her in. Last time, the pallor of her optic
nerves was white in one eye and pale in the other. Basically, healthy
optic nerves with have a rosy, orangish pink color and white means that
the optic nerve has been damaged. Once optic nerves are damaged, it is
said that they will not get better.
Valerie's left optic nerve was still rather white, but her right optic
nerve was ROSY, ORANGISH PINK! We are thrilled. This is a miracle.
We went to Disney World last weekend. And were surprised that we all
had a really nice time. A wonderful organization hosted a family weekend
retreat there and we were chosen to go, along with our friends from the
Miami area who's daughter has the same type of tumor as Valerie. Our girls
were clueless about all of the Disney hype and were not interested at
all in the characters or anything else "Disney" which was nice.
They did however have a wonderful time as our rooms were on the ground
floor and opened to a garden full of live ducks, bunnies, and even a turtle.
They enjoyed feeding the animals more than anything. They also enjoyed
swimming in the pool and watching the fireworks at night. Valerie's favorite
activity though was playing in the large sink in our room. We did go to
the theme park on Sunday - Brooke rode on Space Mountain (a roller coaster)
with Craig. I put some pictures under the journal on her website. Valerie
had no interest in sleeping in the portable crib we brought. Instead she
took turns sleeping with us - there is something really wonderful about
watching children sleep and smelling their sweaty hair.
We we arrived home, and Valerie had no interest in her crib any longer.
Last night Valerie Grace moved into the big girls' room. Now, all four
girls share the same room. They all seem to be enjoying it - and the big
girls are enjoying not having to be quiet during Valerie's nap time, as
she just has a "rest" in her bed now once a day while they read.
Love,
Celeste
September 14th 2006
Valerie Grace had an MRI on Monday and again it looked very good, the
tumor was stable or slightly smaller and the cyst was smaller as well.
A good friend of ours came by last night. He was asking for prayer for
a very difficult situation - one in which, from a worldly perspective,
would give him every right to be angry - but instead, this brother in
Christ was filled with such amazing love for a difficult family member
and truly saw that this was not a matter of flesh and blood.
For we do not wrestle against flesh and blood, but against principalities,
against powers, against the rulers of the darkness of this age, against
spiritual hosts of wickedness in the heavenly places. Eph. 6:12
Through listening to our dear friend, God incredibly worked in my own
heart on an area I have been praying for Him to change - loving everyone.
I know that must sound really simple, but it is this loving of a persons
soul and seeing the bad for what it really is.
Craig and I stayed up late last night talking about this, and he had a
similar experience while listening to a children's Christian radio program.
God opened his heart in the same way - to the point where he felt this
strong desire to find someone that was difficult, just to love them.
Throughout this time since Valerie has been diagnosed, we have learned
to try to see where people were coming from even through the sometimes
hurtful comments that they would make regarding why they thought Valerie
had this tumor, what we should do to treat or not treat the tumor, or
a number of other such comments. But, while I learned to not be upset
or angry about the comments - I did not have an overwhelming love for
these other people - and now, I feel like I am getting a glimpse of the
love that Christ has, that our dear friend is totally filled with - and
it is just glorious! I see the faces of so many people in my head that
at one time I considered to be "difficult" - the love is overwhelming
- and I really feel this is just a glimpse of what is to come.
The grace of the Lord Jesus Christ, and the love of God, and the communion
of the Holy Spirit be with you all. (2Co13:14)
Love,
Celeste
September 16th 2006
Craig will be leaving on Monday for Ecuador. We are all very excited
to say the least.
We are asking for prayer that Craig, Dave, Stephen, Sarah, Elizabeth and
her father, and Patti Sue make it through customs without being stopped.
Prayers for God to use them while they are down there and for each of
them to feel God's presence in a mighty way. Prayers for safety also.
I have not a worry at all about the trip at this point, I am just very
excited for them.
We continue to pray for wisdom and that we will continue to follow God's
way through all of this.
God has continued to show me so many great things this week - I have been
in tears often just overwhelmed with the Love of God.
Love,
Celeste
Now may the Lord direct your hearts into the love of God and into the
patience of Christ. 2Thes 3:5
September 18th 2006
Valerie Grace and I drove Craig to the Gainesville airport today. He
then flew to Miami where he met the rest of the people going down to Ecuador.
"We got here fine. The flight out of Miami was delayed and so we
actually met up with Patti Sue there. Her flight left before ours. Both
flights were a lot of fun. It was dark when we got into Quito, so I didn't
get to see the city much. We head out for shell tomorrow morning. Customs
not only didn't search any bags, they didn't even look at the customs
forms we filled out. They didn't even collect Dave's."
Thank you for your prayers!
It is a house full of girls this week and we are having a blast - I negotiated
with the girls to take the large vase full of milkweed which they had
covered in hungry monarch caterpillars onto the back porch - it is amazing
how much waste a half a cup of caterpillars can produce!
September 23 2006
I have been in contact with Craig all week through emails and phone calls.
I think Craig painted a wonderful picture when he described where he is
staying as "it is like being inside my frog tank".
This has been a wonderful break from treatment for Valerie Grace - praying
hard about going back in this Monday, but I really feel now it is what
God wants.
I have heard from God so clearly this week. I ran to Him with some fears
I was having and He clearly told me to speak them out to Him - These were
issues that I "knew" there was no answer to right now - yet
God answered them one by one, not with the answers I would have expected,
but in such a way that there was only peace - it has been just amazing.
God has spoken clearly to me about Ecuador and I am so excited about Craig
coming home - not because I miss him terribly and am desperate for him
to come back, but because God has spoken clearly to me. I have gone to
God so many times with these questions - these obstacles I see, He has
answered everyone with a positive answer. Joyful and ecstatic do not even
begin to explain where I am right now!
Love,
Celeste
September 29th 2006
Monday chemo day went very well. I met a new family from Belize. The
husband is a herpetologist. Most likely we will see them for a while since
their daughter is also currently on weekly treatment. Valerie did very
well, and especially enjoyed Chick-fl-A and homemade cookies brought by
Grandma Sara (as did the nurses and volunteers). It was really a time
filled with the amazing power of God's love.
After chemo, we went to pick up Craig at the airport. I won't go into
everything Craig told me in the car, as I imagine he will write an update
at some point talking a bit about his trip. But it was such a confirmation
that we serve a living God! I am a planner by nature, so yet again, that
kicked in. The main question I keep having is, "what is the best
thing for Valerie". I know I serve a loving God, and I know that
I have no reason to make plans, but just to enjoy Him today - to love
Him and to share His love with others whether I am at home, in the hospital
with Valerie, speaking with other moms, or stuck in traffic. There is
such an amazing comfort in knowing that He will continue to guide us -
there is no question about that. He has guided us each step of the way
with Valerie's treatment to date, and I have no doubts that He will continue
to guide us as to what is best. From a worldly standpoint there are many
benefits to Valerie being here and being in Ecuador and some drawbacks
to both. Praise God that He leads us on the best path so that it is not
our decision to make, but His.
My mom (Granny Suzy) left today. My dad drove her down the day before
Craig went to Ecuador and came to pick her back up today. She has been
such a wonderful help - I had two weeks to just love on my girls without
the extra house stuff that I normally have to do (the girls were delighted
to play instead of put up laundry and empty the dishwasher). She was able
to sleep beside little Valerie Grace a couple of times, which really has
a way of melting your heart. We will miss you abuelita!
October 18th 2006
An update of the Welch family comings and goings as seen by Craig...
Many you friends and family of ours may be asking, as we have asked ourselves
many times, "Why are you going to Ecuador?" A just question.
The short answer is: we believe God is telling us to go.
But I'm not one for short answers, so here's the long one.
There's no such thing as a weed. That is to say, there's no genus or species
or family of plants called weeds. A weed is just a plant in the wrong
place. A corn plant isn't a weed in a corn field, but it is in a wheat
field. The most beautiful orchid in the world is just a weed if it's growing
up out of the crack in the sidewalk. All my life I've felt like a weed.
Not unappreciated or unloved, just planted in the wrong place. So many
of the traits and talents and quirks and faults that I was born with never
meshed with where I was or what I was doing. I gave up trying to fit in
long ago. But God was smiling. He knew every fiber of my being and He
was the one that put each of them there for His purpose. My vision never
was able to see beyond using any more than one or two of these traits
in order to create a place in the world for myself. And I wasn't really
satisfied in any of those places that I made. But now I've seen what I
believe is His vision. And it uses all those parts of my personality that
I thought were just there by chance. I feel like I've found the place
I belong because it's the place He planned on me being when He made me
in the womb.
But I'm not the only one going, so what about the children? Well, for
Brooke, Courtney and Natalie, it is an opportunity to grow up in a simpler,
quieter, and in many ways safer environment. It’s an opportunity
to experience another culture, another language, and one of the most beautiful
places on the planet. I've always felt bad that my children wouldn't have
the opportunity to grow up experiencing the outdoors like I did. Once
again, God had a bigger plan that I did.
Of course, your main question, and mine for quite some time, is what about
Valerie? I set up her brain tumor before God as an insurmountable obstacle
to us ever going to Ecuador . I didn't see any way possible for us to
go and take her with us. She could be healed or she could die, otherwise,
we can't go. But yet again, God's vision was greater than mine. Celeste
wanted to give Natalie the middle name Joy so that she would be full of
joy and God could use her to teach us joy. And that's exactly what happened.
Valerie was given the name Grace for the same reason, and through her
God has taught us so much more about grace than we would have guessed
there was to learn. God answered my question, "How can we possibly
take Valerie to Ecuador ?"
And He said to me, "My grace is sufficient for you, for My strength
is made perfect in weakness."(2 Cor 12:9)
As much as Celeste and I like to have the answers before us and to be
in charge of the circumstances, God has chosen to teach us about grace.
He wants us to trust in Him where we can't see the outcome. He wants us
to rely on His power and not our own. And that's precisely what we intend
to do. It's easy to say you trust God to provide all your needs when you
feel safe and secure in your job. But when you lose that job and no longer
feel secure and safe, then you can be sure that your trust was really
in the job and not in God. If you really trust Him to provide, then all
of your other outward circumstances are irrelevant. If we trust God to
take care of Valerie, and we do, but we are afraid to take her away from
what we feel is the "best" medical care when He is calling us
to Ecuador , then our faith is really in the doctors and not in Him. If
He is calling us to Ecuador , then I am quite confident that His plan
did not overlook Valerie. And this is requires us to rely on the grace
of God. It requires us to go to Him on a daily basis to get the strength,
encouragement, direction and sustenance that we need for that day. You
hear stories of missionaries and preachers who where flat broke and couldn't
afford to feed their own families, but somehow each day the means to provide
miraculously appeared just when needed. To most of us, that doesn't sound
like a great way to live. We would rather see God put a million dollars
in the missionary's checking account and let him write a check for his
daily needs. And the reason is, we are afraid that God will drop the ball.
We're afraid He might forget about us one day, or that we will drop out
of His favor and He'll stop providing miracles daily to provide for our
needs. We like the security of being in charge of resources ourselves.
I'm no exception, I like that too. But in the two situations, which person
will be closer to the Father? I would give up my so-called security in
worldly stuff in order to get my daily bread from a much more reliable
Source. All too often I forget that God is my Father, and He longs to
provide all my needs, to allow me to set aside my own agenda and sit at
His feet. He wants me to trust Him for every daily need, including the
health and lives of my children. After all, however I may measure up as
a father to them, He is a better one and is far more qualified to provide
for them than me.
Now from a purely worldly standpoint, even if God were not calling us
to Ecuador , it wouldn't change much of Valerie's options. Her chemotherapy
regimen ends in February and there are no reliable protocols available
after that. There are some experimental treatments and radiation is potentially
available when she is over five years old, but most of those have significant
side effects and no real track record for success.
So we’re starting to make our arrangements. We’re looking
into where we can stay down there, what stuff we need to bring, how to
get a visa or residency, how to raise support for living there, and many
other things. We don’t have any time frame set up yet. God hasn’t
impressed any specific date on us, but we are going down to visit with
all four of the children in December. I don’t mind telling you I’m
pretty excited about it all. And I still say, given the opportunity to
minister to orphans in the Amazon jungle: Who wouldn’t want to go?
Grace and Peace to you in abundance,
Craig
October 24th 2006
Valerie had this week off of chemo, which has been very nice. She and
Natalie Joy are sharing a room now and the big girls have moved into their
own room - everyone seems to be enjoying the change and Natalie and Valerie
are finally getting the extra sleep that they need. We had a fun time
last week at Silver Springs, but Courtney apparently picked up a virus
or something. Brooke and Courtney have it now. It seems to make you feel
like a sack of potatoes, but not too bad. The girls had a really great
time at Silver Springs- each time I take the girls somewhere I am amazed
at the joy they bring me. Seeing the world through 8 tiny eyes is a very
exciting thing. Valerie is getting so big - anytime someone cries she
immediately comes to get me and leads me to them while holding onto my
index finger with her whole hand. She no longer wants to stay in her stroller
when we go out - she want to walk around experience everything. Her new
favorite thing to say is "cute". She thinks her bed is cute,
her animals are cute and even mommy and daddy are cute (oh, and she thinks
she is pretty cute too).
Cuffie the bunny had quite an adventurous week. First Natalie Joy decided
that Cuffie would like to go outside. So she secretly planned to take
him out. Well, he ended up getting into our neighbors yard and Natalie
ran inside. When she came in she saw the other girls enjoying their Spanish
lesson, she didn't say anything about the bunny. Hours later I saw the
cage was open, and then that the gate to the big field was open. All I
could say was "NATALIE JOY - come here" (Grandma Sara, I think
you can just hear me as I imagined you yelled "Craig - come here"
on more than one occasion). Natalie told us what happened and we went
on a big search. I was upset with her and let her know that she better
pray to God and ask Him to bring that bunny back because there is no way
we are going to find him now (it was getting very dark). Well, she turned
and walked to the back door from the big field and Cuffie the bunny ran
right in front of her once she got to the back door. So what I thought
was going to be a wonderful lesson in responsibility, ended up being a
much greater lesson and one I know she will not soon forget.
The next night Cuffie decided to make his own escape (having had a taste
of the wild I suppose). In the morning I noticed that the screen door
had been pushed open. I told Natalie Joy to get some help. Natalie Joy
ran in and said "Cuffie is missing.....and I DIDN'T DO IT".
She was very excited and happy while saying this. So the day goes on -
we searched, we watered the bushes, we called the neighbors - no Cuffie.
That evening the girls went out in the tortoise lot and were playing with
their "horse" (it is a log on the ground- I think it has a name
too). Then there is lots of yelling. Brooke found Cuffie in our other
neighbors yard (sweet Mr. Ron who recently went to be with the Lord).
Brooke said - I was out here playing on my "horse" when I saw
his white tail just looking at me. Craig came out and jumped the fence
and with the help of the 3 big girls, caught Cuffie (who is now securely
in his cage with the screen door fixed). The only way for the bunny to
get to Mr Ron's yard was by going down the road (the tortoise fencing
is buried in the ground). We still have a gerbil loose in the house though
(if anyone wants a gerbil - we have plenty for ***free***).
I would really appreciate some prayer. For myself, planning and worrying
tend to go hand in hand (or at least one seems to lead to the other).
The words God spoke to me while Valerie was in the hospital over 18 months
ago continue to go through my head daily - today is the day the Lord has
made, I will rejoice and be glad in it. I don't want to miss out on the
joy God has for me today by planning, or even thinking too much about
the future. I know God can/ will/ and has taken care of all of the planning
in my life - I really see Him teaching me a valuable lesson right now.
Thank you to everyone who has sent us encouraging emails, it is so nice
to hear from each and every one of you.
Love,
Celeste
November 8th 2006
Valerie Grace had a good couple of weeks off of chemo. We had a lot of
fun, going to the Jacksonville Zoo, Silver Springs, and other fun places.
Craig has been going to Spanish class a couple of nights a week and Brooke,
Courtney, and Natalie have been going to swim lessons (and they all 4
are learning a lot!).
This past Monday, Valerie went back in for chemo. Her blood counts were
very good (better than before we started chemo last year) and she had
gained 2 pounds since our last visit. With Valerie's counts being so good,
she has been able to enjoy playing outside a lot more. She loves picking
oranges off of the orange trees, playing with and feeding the chickens,
and running "fast".
Craig is going on a trip for work next week. This will be my first time
without Craig or my mom during a chemo week. Please pray that everything
goes really well. I am looking forward to it a bit and most likely we
5 girls will end up popping some popcorn and watching movies at night.
Four more weeks from today we will be in Ecuador, Lord willing. God continues
to provide us with so many confirmations. Valerie Grace will have an brain
and spine MRI at the end of this month.
Love,
Celeste
November 13th 2006
Craig has always said I don't have a good grasp of the English language,
that I tend to leave out important words. Well, apparently this is true.
Several people have emailed saying they were shocked we are moving so
soon.
Craig, the girls, and I will be driving to Miami December 6th and flying
to Quito December 7th - then flying back to Miami December 14th and driving
back up to Gainesville on the 15th. This will be a one week visit.
Craig wanted all of us to get a feel for Shell before moving down. Our
thought is that we will be moving down by July 2007 or before - we do
feel that God wants us to move down after the land for the orphanage has
been purchased, but that could be very soon.
The piece of land is approx. 5 acres. Currently the children are living
in a rental house about the size of our home (but split between two houses,
like a duplex divided by a breeze way. There are about 17 children there
now. The price of the land is $20,000. Patti Sue (the woman who started
the orphanage) had a plan drawn up of how she sees God providing homes
for the children on this land and it is very exciting, especially seeing
that a home down there can be built for around $20,000.
If any one would like more information about the orphanage or anything
else concerning our trip down or our move, please feel free to email us.
Sorry for the confusion.
Love,
Celeste
November 12th 2006
Craig left this morning. We had a busy morning of shopping, packing,
picking up cars, etc. He realized this morning that he would be leaving
today rather than tomorrow. As soon as he left our neighbors called to
let us know a hawk was eating one of our chickens. I ran out to the field,
and sure enough, Valerie's favorite chicken was on the ground, dead, with
a hawk eating at it's neck. The hawk just kept on eating until I was within
a few feet of it. So, I buried the chicken. Then we realized that it was
going to be getting cold, so we moved all of the tortoises (except for
one who was determine to stay in it's burrow) into the winter lot, caved
in old burrows, insulated the barn stall, and hooked up all the heaters.
Craig's dad came over to help with the green house and plants. I am super
sore, but really needed the exercise, and the girls had a blast moving
the tortoises into the barn one at a time using their wagon. We squeezed
in dinner, and almost a bath until our neighbor came by to let us know
they saw our missing chicken in another neighbor's yard (the chicken had
fled but not come back after the hawk attack). So, I sent the big girls
out with a flashlight. Our wonderful neighbor had already jumped the fence
and chased the chicken towards our yard. The girls were thrilled to have
their chicken back in the chicken house tonight. We finished up with a
movie and more popcorn than we could eat (which is very unusual). Valerie
Grace grabbed a pillow from her room and fell asleep within a minute.
Thankfully tomorrow we will get to rest at the clinic.
Craig and I have had a really busy week - but at the end of each day
we look at each other and are in agreement that each day is great, because
it should be bad, exhausting, and miserable - but instead, with God, it
is delightful. There is something really wonderful about seeing God's
grace so clearly.
Love,
Celeste
November 20th 2006
For the last two weeks I had been feeling that we should not do chemo
next week. When I spoke with the doctor today he agreed that it would
be fine and that there was no real benefit in doing the chemo next week.
After that, Valerie was scheduled for her normal 2 week break anyway.
Today right after chemo, Valerie acted a bit off - said her mouth hurt
and just didn't look or act like herself - she then fell right to sleep
and I let her sleep in clinic for 30 minutes in case she became worse.
She woke up and was acting better so we came home. It is VERY common for
children on this chemotherapy to develop allergic reactions and it has
been surprising that she has been on it a year now with out any problems.
Since we are not sure if this was a true allergic reaction, we will pray
about things over the break and follow God's leading. She has had diarrhea
since last night (fairly bad too) - but is playful, and happy.
We received a call from Patti Sue last night and she was thrilled to tell
us that someone unexpectedly paid to purchase the land for the orphanage.
She expects that the land will be surveyed by the first of the year.
I was talking to Craig last night about how I always thought that when
God called someone to go somewhere else, that the signs that showed they
should go would have to be weighed against those that showed they shouldn't.
Ever since the word orphanage was spoken through the mouth of our good
friend Erich Richter, every sign God has shown us has said "Go".
So we continue to seek Him, not Ecuador, and are just excited to be a
part of His plan.
I had Valerie's MRI moved up to tomorrow - not sure what time yet.
Love,
Celeste
November 25th 2006
It has been a rough week. Valerie has been throwing up and having diarrhea.
She has gone the last 12 hours without throwing up, so hopefully her tummy
is starting to settle down. Her blood counts were low last Monday, so
I imagine it is taking her longer than normal to get over this. It started
on Sunday, so it is not a chemo related problem. We were told it is most
certainly a virus. She is very happy and playful though, which is great.
Last night was the first night I was able to sleep, mainly because it
was the first night Craig did not have sleep in order to head to work
at 6am the following morning (he even worked Thanksgiving). Next week
will be very busy also. Valerie's MRI has been rescheduled for this coming
Tuesday. I was told on the phone that I had to take her in on Monday for
pre-op. I let them know that no way, no how was I going to bring her in
on Monday just to fill out forms and have someone look at her - I felt
strongly this was not something God would want us to do. Praise God, they
made an exception for us - and Valerie can enjoy Monday at home.
My parents are here visiting which has been very helpful. Craig's parents
were able to watch the girls last Monday during chemo and bring us some
needed pedialite and prescriptions.
This week has definitely brought up some questions about Ecuador - but
I know God is big enough and I know this week has been part of His plan.
We continue to seek Him daily - to cry out - to blindly follow, knowing
that our trust is in Him.
Please pray for Kyle. He was diagnosed with the same type of tumor as
Valerie back in 1999. His fight is about over. His mom is by his side
almost constantly. Praying for continued strength and peace for their
family and comfort for Kyle.
Love,
Celeste
November 25th 2006
Valerie has been 100% fine today - eating ALL day. We also received an
email from Patti Sue today. She was talking with the man that owns the
land that she is buying. While they were talking it started raining and
a rainbow was over the land. She ran home and took a picture of the rainbow
over the land.
Thank you for your prayers!
Love,
Celeste
I took Valerie in for her MRI this morning. We had requested a spinal
MRI because she complained of back pain while we drove down bumpy roads.
The type of tumor she was diagnosed with can disseminate down the spine
in some children. When we took her in they wanted to intubate her (since
she was throwing up last week) and put in a urinary catheter (because
she has diabetes insipidus - not at all the same thing as regular diabetes).
I refused both, and felt really confident this was the right thing despite
the doctors pushing the issue several times.
She woke up right after the MRI and said "pretzels please, food
please" and was running around once we arrived home (even standing
up on the window sill looking out the window).
I picked up a CD of the scan before we left the hospital and the doctor
confirmed what I saw on the disk - stable tumor and cyst (cyst looked
smaller again to me) and no tumors in the spine or anywhere else. The
doctor says she is very please with how well she is doing. If we continue
with chemo, there would be 2 more 6 week cycles (4 weeks chemo, 2 week
break). It seems unreal when I think that Valerie has been on chemo for
over a year now - by the grace of God it has not felt like long at all.
Young Kyle went to be with the Lord yesterday morning, with his mother
by his side. I know his mom, dad, and twin sister will miss him.
Valerie's oncologist called today to see if I had heard of any new treatments
for pilomyxoid tumors - they are so rare, that often parents who talk
with other parents of children affected by this disease have heard of
more cases than the doctors have. Sadly, from a medical stand point it
is a bit like sticking your hand in a hat and picking out one of about
5 bad tricks. Praise God that we seek God's wisdom first and not mans
- that we understand that this place is not our home. We have met over
10 other families with children who have this type of tumor, the vast
majority of them are strong in their faith and have seen their faith grow
through this all.
Going into this MRI I felt such calm - a real peace and confidence that
we are following God on everything concerning Valerie's care (and concerning
Ecuador).
Thank you everyone for your prayers and the love you have show us over
these past 22 months.
Love,
Celeste
December 5th 2006
This has been a strange couple of weeks, but I really feel that the Lord
is going to use it as a contrast to this next week in Ecuador. Only the
Lord knows for sure, but I am really excited about what He has planned
and just excited to be a part of it (no matter how small that part is).
Craig finished up his papers that we due this week (actually, he started
and finished them over the past two weeks - in typical Craig style).
Our neighbors will be house sitting for us and taking care of all of
the animals (I never fully realized how many animals we have until I walked
their daughter through our house, showing her what all needed to be checked
on).
We will be driving down to Miami tomorrow (Wednesday) around lunch time.
It should be about a 5 hour drive. We will spend the night down there
and then our flight to Quito,Ecuador leaves at 7:30 Thursday morning.
We will be staying in Miami with Cris and her family who are friends of
Mardy's (the woman who first told us about Patti Sue and the orphanage).
Cris is the sister in law/ sister of the doctor/nurse team who serve at
the hospital in Shell. We are humbled by this families generosity in letting
us stay and helping us get to the airport (by 4:30 am!) and picking us
up from the airport (at midnight the following week).
We would appreciate prayers that our luggage all makes it through customs
(we will have a computer monitor, steering column, reverse osmosis system
w/ tank, and other items that might not look quite right going through
an x-ray machine). Also praying that check in goes smoothly (we were able
to get a doctor's note for Valerie stating she needs water available at
all times and for the liquid medication we are taking). Also praying that
the girls (or I) don't get sick and are able to enjoy the whole experience.
I have been prone to getting car sick in the past, so I am praying that
we all feel great driving down the mountains.
Once we arrive in Quito (should be right before noon - same time zone
as FL), we will drive down to Shell (about a 4-5 hour drive down the Andes
mountains).
We will stay down a week and then drive back up to Quito next Thursday
and our flight will arrive in Miami around midnight. We will then spend
the night in Miami (thank you Cris) and will drive home Friday.
Patti Sue has sent us pictures of some more precious children who have
arrived within the past couple of weeks. The girls are very excited about
meeting the children and playing with them.
I received a package from a mom (Kelly) who's son was diagnosed with
the same type of tumor as Valerie. I have shared with her about our possible
move, and to my surprise she told me about her time as a missionary in
Peru with YWAM. She has been incredibly encouraging. I had mentioned a
few months ago about another mom who's child has the same type of tumor
as Valerie - she shared with me about her time living in Ecuador. This
type of tumor is so rare - only God could orchestrate two other Christian
moms being in my life who would have so much to share about their experience
in South America helping others. And then there is another family who's
child was diagnosed with a different type of brain tumor who joined a
group I am a part of - their son was diagnosed in Ecuador and they were
able to give me the contact information of an oncologist who works down
there (who used to work at St Jude) - this person came into our life when
the question "are there any doctors down there for Valerie"
came up. This is only a very small portion of the "coincidences"
that have occurred in our lives over the past 6 months. We serve a great
big God.
The package that Kelly sent was a CD of songs - the CD is filled with
song lyrics pointing towards the verse the Lord has laid on my heart the
past couple of weeks -
Psalm 25:4-5, “Show me the path where I should walk, O Lord; point
out the right road for me to follow. Lead me by your truth and teach me,
for you are the God who saves me. All day long I put my hope in you.”
Kelly has been such an amazing encouragement to me - so much so that
I am often brought to tears by her words - knowing that they are words
the Lord has laid on her heart to speak to me.
Thank you to everyone who has emailed or left a message on Valerie's
site. Thank you for praying for us, for encouraging us to grab hold of
the Lord's hand and follow where ever He leads us. Our hearts are at peace,
we are filled with joy and excitement.
Love,
Celeste
My sheep hear My voice, and I know them, and they follow Me. And I give
them eternal life, and they shall never perish; neither shall anyone snatch
them out of My hand.
John 10:27-28
December 16th 2006
We are home! Here is a link
to some of our photos:
I have a detailed journal of what we did, but here is the condensed version:
Wednesday we drove to Miami for 6 hours. The girls were all great on
the drive down, and the time went by quickly until we hit traffic near
Miami. We stayed with Cris and her family. The girls enjoyed playing there.
We woke up at 4am to be at the airport at 4:30am. We went through security
with 4 bottles of water and liquid medication for Valerie - no one said
a word, it just went right through (what an answer to prayer). No one
even mentioned that my passport was not signed until we arrived back in
the States yesterday. The flight was great. Valerie fell asleep as soon
as they turned on the engines and Brooke squealed (very loudly) with delight
and clapped for joy as the plane got off the ground. The flight went quickly,
the food was great, and we all had a good time. We arrived in Quito at
noon and never even received a customs form, so no worries with customs
at all, they just waved us on through. Patti Sue met us at the airport
and we started the 5 hour drive down towards the jungle. We saw the volcano
still spewing ash and drove over the ash/ rock road near Banos. The girls
did great on the car ride (me too!). We arrived at our house and Brooke
found a tarantula which Craig caught the next day. Craig put together
bicycles for the children at the orphanage, made boppy type pillows out
of sheets of foam, and spray painted Giovanni's bike. We ate at a pizza
restaurant, Chinese, and Maria's (wonderful potato and plantain soup!!).
We walked around a lot, went to the river, played with the children (Patti
Sue would bring them by the house we were staying in and we all enjoyed
that). We met several other missionary families, looked at 2 houses to
possibly rent, ate dinner with the Koleski's (the girls loved playing
with their children - they made a big fort out of their couch cushions
and Valerie Grace kept yelling "win pooh win pooh" as she played
in the "fort" with a whinny the pooh stuffed animal. The girls
loved all of the rain - it rained everyday. They loved the chickens -
that crowed every morning starting at 6am.
I started out the drive down to Shell really questioning why we were
doing this. And even before that, I looked at Craig on the plane before
we took off and said "are you sure we should go" (this was a
bit of a joke as I had said earlier that if God says "don't go"
at the last minute, I am getting off that plane. Craig countered with
"but we would have already bought the tickets". When we were
almost to Shell we drove through clouds looking down and up at mountains
- it was just breathtaking. The verse that kept going through my mind
at that moment was
The heavens declare the glory of God; And the firmament shows His handiwork.
Psalm 19:1
Each day I grew to love Shell more, to stand in awe of God. Butterfly
ginger and other plants I was going to miss having here grow wild down
there and are everywhere. We were concerned about fire ants since Brooke
has an allergy to them - but down there we did not see any. We saw lots
of neat leaf cutter ants though. Shell even had a fireworks display the
day we came (Brooke loves fireworks). The only thing I was not crazy about
was the brown bath water, yet God provided a peace, and I let the girls
bathe in it.
I was able to go to a prayer night that some of the ladies have. That
was really nice, to see other Christian women praying for each other and
having a time devoted to praising God (there was lots of praise and only
a few requests).
The van came to pick us up from our house in Shell Thursday morning,
we then drove to Quito and flew to Miami. We were out of the Miami airport
around 1:30am. We then drove home - stopping occasionally for a power
nap at rest stops. The girls were again amazing, sleeping on and off and
snacking on the drive back up. We arrived in Archer around 7am Friday
morning.
There are lots of details to get worked out - but I have no doubts that
God will work all things out according to His plan (it is amazing what
a good night sleep can do for helping one rest, and be at peace with details
and such).
Thank you all for your prayers. We all had a wonderful time and were
a little sad to have to leave.
Two years ago today, I thought I knew what love was. Back then, I thought
I was living the "American Dream". I felt like I had a winning
ticket - 4 healthy children, a wonderful husband, and a beautiful home.
However, that dream was turned into dust when I suddenly felt like something
"bad" was going to happen. I paid up all of our bills, so Craig
would not have to worry about that sort of thing and I sought out God
like never before. The verse He put on my heart was Hebrews 11:13-16:
Then we received the news on January 31st 2004, that our beautiful, perfect
10 month old Valerie Grace had a brain tumor the size of a small orange
in the middle of her brain. I knew 3 days earlier when I took her in to
the pediatrician and she suggested an MRI, that my baby had a brain tumor.
I was told not to worry that it was most likely nothing. I told Craig's
parents and Craig when I got home, but no one seemed to even be able to
grasp the thought that a brain tumor was a possibility. When we went in
for the MRI on the 31st, the radiologist told us "this is most likely
nothing to worry about" - then looked at us sadly two hours later
and told us that it was indeed a brain tumor. There was no shock from
me - no surprise - God had prepared me for this day in a way I will never
fully be able to express. As I sat there, holding my baby who had just
woken up from anesthesia, looking at a computer monitor of my daughters
brain with a bright white glowing ball in the center - I felt a peace.
Yes, there have been days of crying - not "why me" crying,
but crying from exhaustion, crying over hearing my baby cry, crying over
seeing the pain other families are going through. But through the sadness
and tears - I have learned to love, to live, and enjoy life more than
I ever dreamed possible. The dream is gone, but a reality has replaced
it that is far greater than the dream really was. The dream made me comfortable
- too comfortable. The dream made me judgmental (I had prayed many prayers
for healthy children, we had eaten only healthy foods, we avoided pesticides,
certain vaccines, and drank only pure water - and really felt this was
the reason for our "perfect life"). The dream made me not seek
out God's will for my life, because I felt I must be in His will - my
life was so "perfect".
The dream would have left out taking our four girls under 9 years old
to Ecuador. The dream would have left out skipping school work to go play
at Homassasa today. The dream would have left out taking my four girls
to a fancy seafood restaurant for lunch today (and having the lunch be
full of laughter and joy). The dream would have left out daddy telling
everyone to put on their pajamas, grab a blanket, and meet him at the
front door (he is taking them out for a drive to look at Christmas lights).
The dream would have left out so many spontaneous things we have done
with our girls over the past 23 months, so many people we have met, and
the love we have felt from friends, family, and even strangers.
Truly God works good out of what the world views as something bad - I
would have never dreamed that life could be this good. I would have never
dream that love could make one cry so much. I would have never dreamed
I could laugh so hard.
Nothing but this could have prepared me for going to the orphanage in
Ecuador and seeing the children there - some children, who before I would
have felt sorry for because I would have felt they did not get their "fair
share". I think so many of us think that life is only good if we
live a certain number of years and experience certain things (getting
married, having children, etc). But who decides when a life has been lived
here on earth long enough to call meaningful? God does.
Before I lived a life full of fear - I had to protect my children from
injury, from illness, from anything outside of my control (I thought if
I tried hard enough I could control the vast majority of things). But
on January 31st, I learned that was impossible. The fear is gone, and
now I rely fully on God. He will direct our paths if we just grab hold
of His hand and follow, letting go of the dream that we thought was so
wonderful.
Praying you all have a wonderful Christmas - praying God's peace, love,
and joy fill your hearts and the hearts of your family for all your days
to come.
Love,
Celeste
January 5th 2007
If we follow the schedule for Valerie's chemo protocol, she will have
only 5 more treatments left. One this coming Monday, then a 21 day break
followed by 4 more weekly treatments. Her blood counts last week were
surprisingly high, but she does seem to be getting some after chemo nausea
for a couple of days. This is easily handled with Zofran though. Her weight
has been good, right around 24lbs. and she is eating well.
I am scheduled to go in and have PRK surgery done on Wednesday. I was
originally wanting to get my 20/400 vision corrected just so I wouldn't
have to wear glasses in Ecuador (which does not work well with the 24
ft of rain they get per year). I went for an opinion from a third surgeon
this week and was told I had Basement membrane dystrophy in my right eye.
I have experienced pain in this eye for a while (just every now and then
it feels a bit like an ice pick in my eye, but not constant). The surgeon
went on to explain that PRK corrects the BMD and that hopefully my pain
would be gone after my eyes heal. I would appreciate prayers for wisdom
and a good outcome (any emails of personal experiences would be great
too). I was told it will take at least 4 days before I can drive and 6-12
weeks before I have great vision (or that is the theory).
We receive prayer requests from Patti Sue regarding the children at the
orphanage. If you feel led to pray for these precious children, please
email me and let me know and I will forward the prayer requests to you.
There are some urgent requests.
Love,
Celeste
January 8th 2007
Valerie did very well at chemo today. I discussed with her neuro-oncologist
about possibly extending the chemo protocol, but she thought that it would
be better to stop around the end of February (according to the protocol).
I think that I have found comfort in "doing something" which
I never dreamed I would - God certainly can change what we say we are
not willing to do into something that is comforting. We will continue
seeking the Lord's will on this matter - but I think once again I will
come out learning a lot. I went from having no trust in the medical community,
to now being comfortable within their walls. And I know that when the
Lord says for us not to be within those walls, at that time I will be
comforted too. This has certainly been two years of finding our comfort
in the Lord and not in our circumstances. I have realized that His joy
can be found in all places at all times whether we receive a direct word
from Him that fills our heart with joy, or during times when we do not
hear from Him, but rest in the truth of His word and His promises - joy
can still be found.
My mom is down helping with the girls. She will take me to the eye surgeon
on Wednesday while Craig's parents watch the girls. I would really appreciate
prayers for my eyes to be able to see clearly quickly and for no more
eye pain.
Love,
Celeste
January 15th 2007
Things are going well with my eyes. The first 4 days were rough. It
felt like my eyes went through just what they went through-they put alcohol
on my eyes to dissolve the top layer, then threw that away, lasered each
eye (I could smell burning flesh), put ice pack on each eye until I thought
they froze solid, then put in a contact lens in each eye. The first day
actually went very well, but after that it felt like I had old contact
lenses in with lots of sand underneath them - as that layer they removed
was growing back. Now the eyes are almost totally healed back and I am
seeing better than 20/40 (this should keep improving over the next several
weeks). I have no pain at all now. They will most likely remove the contact
lenses on Wednesday (praying that the healed eye part stays attached to
the eye and not the contact lens). The surgeon is very cautious about
this, so put off taking them out today. He has been extremely kind and
helpful and I am very pleased with the results so far.
Thank you for your prayers. It is like when I first put on glasses at
14 years old and realized for the first time that there were lines between
the power poles on the road and that people could actually see leaves
on trees from the ground. I always thought everyone saw like I did before
that. I have prayed for several years to be able to see well when I wake
up in the mornings - and now I can (not quite answered in the miraculous
way I had planned, but God's plans are always the best - and I had no
doubt laying on that table and smelling burning eyeballs that this was
God's plan for me (as crazy as that sounds, there was excitement in smelling
that smell because I knew God was with me. Colors are definitely brighter
now than they have been before.
Love,
Celeste
January 31st 2007
Brrrrrrrrrrrrr.............. We woke up to a cold house this morning.
I thought it was just me, but then I looked at the thermostat and the
heater was not working and apparently hadn't been for quite some time.
Thankfully the breaker just tripped on the heat pump (even I can fix that
with out a call to Craig). So we are slowly thawing out now. It has been
unusually cold here in Florida the past few days.
Well, it has been two years now since Valerie Grace was diagnosed with
a brain tumor and 15 months since she started IV chemotherapy. We put
together some pictures to remind us of the last two years here. When going
through the old pictures, it is really awesome to see all God has done.
While we were fully expecting to see God fully heal her right before the
first surgery, again after the surgery, and many times later (tumor gone,
eye fully healed, no scars - we expected it all), He instead has shown
us greater things than we could have ever imagined. Our faith is in God,
not in the healing, not in anything we do - we can't mess it up, we can't
make God jump through our hoops - He has things planned that are much
better than we could even imagine. And yet I can't count the answers to
prayer that we have seen, not the answers we were expecting, but things
much greater. It is the relationship with God that is the answer, the
praying and knowing what His will is in things.
Rejoice in the Lord always. Again I will say, rejoice!
Let your gentleness be known to all men. The Lord is at hand. Be anxious
for nothing, but in everything by prayer and supplication, with thanksgiving,
let your requests be made known to God; and the peace of God, which surpasses
all understanding, will guard your hearts and minds through Christ Jesus.
Philippians 4:4-7
Valerie went in for chemo this past Monday and all of the girls came
with me to see what she has been doing these last 15 months. They were
equally impressed with how well she cooperates and really seems to enjoy
being at the clinic, and how much so many of the people there love her.
We have a video of her getting weighed and measured at the clinic here.
Craig came in to pick up the girls after 30 minutes, although they would
have been perfectly happy staying much longer. Valerie will only have
three more treatments left if we continue with the plan on paper. Her
favorite food after chemo now is Salmon (she ate at least half a pound
of it tonight).
My eyes continue to improve daily - which is very exciting. I used to
have really bad glare at night while driving before the surgery and now
that is gone so I can safely drive at night.
The only other big changes right now in our life have been overcoming
some fears. One was starting up with school stuff for the girls again.
We some how managed to get through two years worth of material between
May and September (in part due to the heat and mosquitoes here during
those months) - and yet the thought of starting up again seemed a little
much. The other was getting back into fellowship with other Christians.
I had somewhere in my head that by going back to church or church groups
that I would some how miss out on being in fellowship with God. For so
long I knew God wanted us home, and while it didn't always make sense
- it did help me to see that He is truly all I need. And now, with this
move to Ecuador, we know that He will be enough no matter where we are.
But for a few months now we have been feeling a gentle nudge to getting
back in fellowship with other believers. We stepped out slightly (attending
church services now and then with the girls). Then God nudged a little
harder and it has been amazing to see what He does when we take that first
step (even fearfully).
With the school stuff, the girls have memorized a whole chapter of the
Bible in two days, and the other stuff is going well too - school is fun.
We will have a Spanish tutor come by on Fridays. He used to live in Cuenca
Ecuador and now lives in Archer.
With the church groups, I can not even begin to explain all God has
done. (the longer I live, the more I realize how little I know). I was
able to hear about God answering a prayer request that I had for the past
few years (in a really neat way). And I was reminded once again by a mom
in the group of the promise God made to me almost two years ago - that
when I was too tired to pray - He would have children praying for our
Valerie Grace. Here was another sister in Christ who I really don't know
well at all, telling me that her two year old son reminds her to pray
for Valerie. (I have heard this same story from five other parents of
very young children over the past two years).
The only new stuff with Ecuador is that Craig and I have both seen an
even greater vision than we had originally seen. I don't know exactly
when we will be going, or how, or exactly what will be done with our house
or our things. It is just really neat to sit back and watch what God is
doing, and what He is teaching me in the process (don't stress, don't
stress - let Me do My work) - life is just so much more pleasant when
I let go and realize I am not the one carving out the path.
Love to all,
Celeste
Chemo Clinic check in:
February 11th
Valerie Grace continues to do very well. We are praying that if we do
the last two chemo treatments, that she will continue to do very well
with them, and afterwards. She has made it through 15 months of chemo
with no blood transfusions, no ER visits, and minimal hair loss. Most
likely, she will get two drugs tomorrow and then one the following Monday.
She is scheduled for an MRI in March, but they are asking again that we
go to a pre-op appointment for this - again I feel we shouldn't, so I
see God opening the doors for that to happen.
Craig and I are continually reminded of how little of a role we play
in everything (to many things to list in an email).- and how much God
is in control working all things together for our good - for His glory
- our role is to show love and follow His lead.
Not this coming week, but next - we will be involved with our church
and will have an opportunity to share what God has been showing us about
Ecuador. We are all really excited (especially Brooke). Craig and I can't
seem to talk to anyone about Ecuador without becoming really excited.
Hope you all have a wonderful week!!!
Love,
Celeste
I pray also that the eyes of your heart may be enlightened in order that
you may know the hope to which he has called you, the riches of His glorious
inheritance in the saints, and His incomparably great power for us who
believe.
Ephesians 1:18-19
However, I consider my life worth nothing to me, if only I may finish
the race and complete the task the Lord Jesus has given me - the task
of testifying to the gospel of God's grace.
Acts 20:24
Our last trip to Silver Springs on Thursday - Valerie had a great time
despite the funny face she made on the video.
February 13th 2007
It has been a crazy week - lots of emotions going every which way. In
the end it all comes back to keeping my eyes on God not on the things
of this earth. Our dear friends, the Richters came by tonight (we love
you guys and miss you!). It was so great to be able to talk about some
fears I have been having - mainly the fear of this closeness with God
possibly not being here at all times, the fear of not having some part
of the world, and the fear of what our following God must look like to
other people. It has been a really interesting week though - seeing life
through what felt like 12 different pairs of eyes. Sometimes those eyes
saw things very clearly and the peace is incredible - other times those
eyes saw a world so distorted from reality, yet so accepted by so many
(including myself at times). I really feel God preparing me for the times
ahead, sort of a training time for what is to come - and the scariest
of all is the possibility of complacency.
For the past 2 years my life has revolved around brain tumor stuff -
that is where God planted me, and exactly where He wanted me to serve.
It has been incredible to say the least - to see how God uses us in places
we least suspect. But now I feel Him gently pulling my hand to lead me
down a new path. The patient registry that God had me suggest to the doctors
at Johns Hopkins is now rolling along (after a continued push from God
to keep pushing), two other side items God had us working in are now all
but completed, and I see Him tying up all the loose ends (and He is doing
it!). How interesting the timing is with Valerie only having one more
chemo treatment. A month ago I saw this change coming, and seeing God
work everything out all at once to facilitate this change is just one
more thing to write in my journal to remind myself of the faithfulness
of our Lord. I have really felt strongly about writing down all of the
miracles I see on a weekly basis, so that if there is a time of not feeling
the closeness that I have felt over the past two years, that I can look
back and squash all fears and doubts that might come to mind.
Craig's birthday is on the 15th. For the past two years we have been
in the hospital on his birthday - one "tradition" I am happy
to see end, though the peace of God during those times stands as a reminder
of what an awesome God we serve.
Thank you to those who have reached out to me over the past weeks (Nikol,
Desi, Martha, Mary-Alice - God used each of you in a special way in my
life this month), We so appreciate all of the prayers, emails, and posts
on Valerie's site.
Love,
Celeste
February 18th 2007
The girls had a lot of fun surprising Craig on his birthday with a homemade
cake, lots of balloons and gifts they had all put together by themselves.
Craig and I had a good laugh at their gifts (an old shampoo bottle "smell
it daddy, doesn't it smell sooooo gooooood??" and many other things
that to them are absolute treasures. When I go through their rooms I am
always finding thing that I have have tossed out, (I think they even have
a skull of a raccoon in there that was bleached out). The cake was quite
a sight, but I have to say, it was one of the best tasting cakes I have
had.
Last night I told Craig that I didn't think we should do chemo today,
but Craig repeated his normal answer "but, maybe it's the cure"
(in his normal joking style). We went in today - all of the girls and
I - and had her blood drawn. They were about to start chemo but I asked
the nurse to please wait until we had her blood counts back. Her ANC was
230 (under 1000 means that your body cannot fight off infections normally,
and under 500 means you are neutropenic). So we went home without chemo
and are done with this protocol. Her doctor and others sang her "happy
end of therapy" and gave her a gift bag and a cake and we went home
(well, Valerie fell flat on her face really hard just as we were leaving
and had a little bit of a bloody lip - but her blood counts that effect
blood clotting are great, so it stopped quickly and she looks and feels
fine now). She is full of energy and eating very well. Here she is blowing
bubbles at Clinic today.
She almost always chooses bubbles out of the prize drawer and almost
always spills them on herself within 30 minutes.
And here she is a few minutes later getting her ears checked
- I missed the best part, when she opens wide to have her throat checked
- she is truly delightful at the doctors office and loves Dr Smith and
Dax (her favorite nurse now).
We are praying that Valerie's counts go back up quickly and are thankful
that this IV chemo is finished. Valerie will go back in on Tuesday March
the 6th for an MRI of the brain and spine (a really long one). We are
praying about when to have her deported (her medi-port removed) and what
if anything to do next. Normally children will repeat MRIs until the tumor
starts growing again and then start another chemotherapy (the others are
harsher and less successful in general). I have felt that we should have
her start taking oral Accutane (an anti-angiogenic drug) within the next
month. I spoke with the oncologist today who is going to look into more
information on the drug and it's use for brain tumors such as Valerie's.
I know if this is the path God wants us to take that it will be made available
to us, and if not, we keep praying and seek out His way for Valerie Grace.
Craig and I (and possibly the girls) will be at the Family Church this
Wednesday - Sunday and will have an opportunity to share about what we
will be doing in Ecuador. If anyone locally is interested in missions,
this would be a good opportunity to learn more. There will be missionaries
from all over the world and a guest pastor from India - they have a children's
mission celebration scheduled for Wed. from 7-8:15pm, and general services
Wed. 6:45-8pm, Sat. 7-8:30pm, and Sun 10:30am-12:30 and 6:30-7:45pm. The
Children's International Choir will be singing which should be a real
treat.
The girls are really excited about this so we continue to pray about which
girls we should bring or possibly all or none of them (seeing that Valerie's
counts are low). Courtney (who is usually our eeyore) is very excited
about Ecuador and drew a picture this week of she and Brooke in Ecuador
while it was raining - Brooke was under an umbrella, but Courtney wasn't.
Courtney explained that while they were in Ecuador, Brooke would suddenly
take the umbrella off of Courtney's head so she would get all wet. My
first thought was to say something to Brooke about being kind - but Courtney
went on to explain with delight in her voice about how much she enjoyed
that. The picture was topped off with the words "I Love Ecuador".
Love,
Celeste
February 27th 2007
Craig and I had a wonderful time this past week. We were so encouraged
by the Lord, new friends from around the world, and our church family.
We felt so loved, so supported - it was just amazing. We were especially
surprised by the number of people wanting to have a place they can bring
their family to do mission work - it was really neat to share with them
all of the opportunities we will have for that sort of trip in Ecuador.
Brooke and Courtney came with us on Wednesday and enjoyed their involvement
- but I think Valerie Grace had the best time coming with us Thursday
evening. She mostly played on the steps. Two of the houses we are looking
at renting in Ecuador have steps which I thought would be a big issue,
but everywhere we go that has stairs, all Valerie wants to do is go up
and down the steps.
The money for our Spanish tutoring had become too much, so we had to stop
having our tutor come. I had prayed to God letting Him know that if He
wanted us to have a tutor, that he would have to send one - Wednesday
night a couple came to our table at Church. The wife is from Columbia
and asked if we needed any help with our language skills. She and her
husband wanted to help in some way with mission work - what an answer
to prayer!
The international children's choir was amazing - I could not stop crying
though, as two of the little girls from India so resembled some of the
children in Ecuador - we miss them. We just heard from Patti Sue today
who said she bought them all new shoes today (much to the delight of the
children!)
Most of all, this week made me so unbelievably grateful for this opportunity
that we have. Unbelievably grateful for our girls who are excited to go
down, so grateful for Bob and Sara (Craig's parents) for playing with
the girls this week and helping us take care of the house and animals,
and so grateful to our church family for inviting us to participate this
week - it is a week we will never forget - full of encouragement and confirmation.
Craig worked on visa stuff today and realized just how much there is
to do. We were able to get in touch with an actual person at the consulates
office (which was a big step - lots of disconnected numbers and consulates
that are only in the office for a couple of hours per week). We are praying
that they will grant us a two year visa, rather than the 1 year listed
on the form (it will be $500 cheaper if they will grant us the two year
visa and save us from having to renew it in a year). We are also praying
that we will be able to get the required health certificates, clean criminal
records, and necessary letters required (and that our passports make it
back to us safely).
The girls were all speaking Spanish today- not real sure why, but they
are motivating me to learn more!
Love,
Celeste
March 5th 2007
Valerie Grace will go in tomorrow (Tuesday the 6th) for her MRI. This
will be a long one - brain and spine. Thankfully, we did not have to go
in to Shands for pre-op stuff all day long today. Instead we went to sweet
Gloria's house to learn Spanish. Meeting Gloria last week at church was
such an answer to prayer. I have made a new friend, am learning Spanish
and the girls enjoy her (and they enjoy the fact that her house has stairs).
This weekend was tiring though. I have been cleaning out the house (we
will be having a yard sale at Craig's parents house on the 17th to start
clearing out our house), praying for this MRI tomorrow and feeling a bit
overwhelmed with this vision God is showing us with Ecuador. Things are
moving right along, and it all seemed to be full of uncertainty with Valerie's
health, coupled with the fact that I feel totally unworthy of being able
to go to Ecuador to help the orphans. I have been crying out to God "I
can't do this without You". The answer I received...."good".
So yet again, I remember the words He spoke directly to me and then again
through my friend Cheryl two years ago - "you will be carried along".
And I realize that it matters not that I strive to fulfill the vision
He has given - the plan will go on and my praises will be to Him alone.
This life is full of uncertainty, whether I stay here in Florida or go
to Ecuador. The one thing that is certain is He is worthy to be followed
- and there is no safer place for me, Valerie Grace, or any of us to be.
I think perhaps Gloria explained life so simply and beautifully for me
today - we were talking about greetings and how when you pass someone
on the street they often say "como estas" - she then gave the
different responses "regular" etc etc. But she said " as
Christians we always say "muy bien" - the joy on her face, and
inflection in her voice, spoke such simple truth.
But let all those rejoice who put their trust in You; Let them ever shout
for joy, because You defend them; Let those also who love Your name be
joyful in You.
Psalm 5:11-12
Love,
Celeste
Now may the God of hope fill you with all joy and peace in believing,
that you may abound in hope by the power of the Holy Spirit. Romans 15:13
Pictures from Brooke's 9th Birthday (at the zoo)
March 6th 2007
Valerie's scan was stable (same size tumor and cyst). Today was not the
greatest and will stand in my memory as a reminder to follow what God
says without fear of what anyone else will say, or what explanations they
will ask me to give. I heard God speak to me early this morning that I
should not take Valerie in for the MRI. Nothing horrible happened - just
lots of little things to remind me that I chose the easy way rather than
God's way. So often the things that stick out in my mind when I hear the
soft whisper of God telling me to go against the flow, are the words that
people have spoken saying that the choice we make (God's choice) is foolish.
So Lord, I hear you - I know Your voice - and I want to follow, help me
to stand!
Love,
Celeste
March 12 2007
It has been a busy weekend - Natalie Joy spiked a fever over 104, but
seems to be much better now. Brooke and Courtney took their chickens to
the fair. Courtney turned 7 yesterday. Valerie Grace is learning to sleep
past 4 or 5am (8am this morning!).
We are starting to clean out our house, and I am amazed at how much stuff
we have. Brooke has been asking if she can have a yard sale since....well,
since I can remember. So we have let her know that now is a great time.
We will be selling off lots of stuff (since we can only take down suitcases
to Ecuador, and shipping items is not a good option - due to mail theft
and the cost of doing so). All money made we will be using to pay for
items we need in Ecuador (beds, a table, possibly appliances). We are
not selling big furniture as we plan to keep our house here for 2 years.
So here is a brief list of what we will have - baby items (crib w/ mattress,
combi stroller, carseats, toys, exersaucer, clothing, etc), toddler bed
w/mattress, small furniture (tables with hidden storage, cabinets, antique
school desk), small appliances, kitchen wares, clothing (baby to adult),
shoes, boots, tons of books (homeschool, Christian, animal, childrens),
games, puzzles, watches/jewelry (huge jewelry box full of fun and some
antique jewelry), small aquariums (10-20 gallon), fish and reptile supplies,
Christmas tree, child's picnic table, toys, toys, and more toys, household
items, computer software, music CDs, videos (nature, children's), children's
table and chairs, and lots more. (most likely Craig will be bringing some
outdoor guy type stuff too).
We also have a 75 gallon reef aquarium (with corals, invertebrates, fish,
fiji live rock, huge wet dry filter, protein skimmer, 6 bulbs (actinic/full
spectrum), etc) In addition we have another 75 gallon aquarium with stand,
2 - 70 gallon reptile aquariums with stand, 50 gallon reptile aquarium,
40 gallon hexagonal dart frog tank, and a huge poison dart frog tank with
automatic mist system (acrylic, about 4'x4'x2'). I will NOT be bringing
these- but if anyone is interested feel free to email me. (Yes, it is
amazing that Craig and I found each other because we both enjoy all of
the animals God created- I bred tarantulas and he raised venomous snakes
when we met, Craig's first two gifts to me were a pet bat that flew around
my apartment and 100 baby tarantulas (God made some beautiful spiders,
just look here and here) - praise God for perfectly matching us together).
The sale will be this Saturday March 17th from 8am - about 2pm. The address
is 8117 NW 1st Pl. (Craig's parents' house). If you go west on Newberry
Rd from Gainesville, you will make a left on 80th BLVD (just west of the
mall and the I-75 exit). Once on 80th blvd. you will drive a while and
then go over a speed bump. The house is a brick one story on the left
between two speed bumps. My phone number is 514-7329 in case anyone has
a difficult time finding the house.
We are hoping to give all items we have not sold to a local ministry -
if anyone has any ideas of a Christian ministry that would pick up our
items, please let us know.
Love,
Celeste
March 14, 2007
Valerie Grace will be going to the endocrinologist on Friday. After her
MRI we had a bunch of lab work done. I had requested that we have certain
tests done due to the location of the tumor in the hypothalamus. Her FSH
was high and her growth hormone was low. We turned down the longer test
for growth hormone stating that we did not feel that we should give her
artificial growth hormone. I immediately received an email from the doctor
stating that Valerie's oncologist said she should not go on growth hormone.
So Friday morning I will be taking her in for an x-ray of her wrist (something
I have been wanting to have done for 6 months now). This will help determine
her bone age and give us some more insight about the high FSH.
I had been asking for this and was repeatedly told I didn't need to have
the tests done. I wanted to have it done before we move so that I could
take any necessary mediations down with us. Once again, God opened the
door. It is amazing through this whole journey how I am coming to trust
God's timing - praying, obeying, and trusting that His way is the BEST
way.
We watched a Rob Bell video at our family group tonight called Rain. The
whole illustration was showing how God is there in the midst of the storms
of life holding us saying "I love you, you're gonna make it".
Tears came to my eyes as I remember just how powerfully God spoke to me
when Valerie Grace was diagnosed with a brain tumor - and even before
hand, preparing me. It's has been a great journey, and continues to be
filled with His joy.
Everything is coming together very well for our preparations for Ecuador.
Our yard sale is Saturday and I am hoping to notice at some point that
our home is a bit more empty.
Love,
Celeste
Friday, March 16, 2007
Valerie Grace went in for her hand X-ray and endocrinology appt. today.
She had a great time running up and down the hallways and following Dr
Silverstien around where ever she went.
Thank you for your prayers - Valerie Grace does not have precocious puberty
- her bone scan was that of a child 2 yeas and 6 months and things were
explained to us a bit differently today. And again, it was agreed upon
not to do the long growth hormone testing and we were told that the test
results for that couldn't even be found from the first test (although
they were sent to me last week and showed it was low). Valerie has been
growing taller, and I don't feel that she has any issues with growth hormone.
Her thyroid function is normal and her cortisol levels are great. The
most amazing thing is that her blood sodiums have been normal every day.
Normally children with diabetes insipidus have severe issues with blood
sodium levels.
We left right after receiving a big hug and acknowledgement of what an
amazing job we have done taking care of Valerie. I went on to explain
that it is all God.
Praying our sale goes well tomorrow - and praising God for the wonderful
news we heard today.
Love,
Celeste
March 21 2007
What an amazing week - such a contrast to early last week (as far as
my outlook on things). We have seen God's hand working so clearly in our
lives. We see how little by little, piece by piece, He is providing the
way for us to get to Ecuador. We have had many people asking us what needs
we have. We made a new website www.thewelchfamily.org that has ways you
can get involved and links to information about coming down for short
term trips.
This week, we had a total stranger pay us over 4 times our asking price
for some toys we were selling. I came inside and just started crying -
crying at how big the body of believers is and how church walls don't
matter, we are all linked together. Crying over how God has been so faithful
in providing all of our needs without us desperately trying to get things
to work out in our time frame.
We also discovered that we can have prayer cards printed out for 1/10
of the price that most places charge by just making them ourselves and
uploading them to WalGreens. I went to pick up the pictures we uploaded
online, and the young man behind the counter was shocked that we were
willing to move to Ecuador. "Willing?" - it still amazes me
(and Craig also) that anyone wouldn't want to go. To us, this is no sacrifice
- this is what we were created for.
Ephesians 2:10 For we are His workmanship, created in Christ Jesus for
good works, which God prepared beforehand that we should walk in them.
Courtney found $20 outside of Gloria's home on the ground. She asked Gloria
if it was her's and then Gloria asked someone else in the home. It belonged
to no one. So Gloria told Courtney it was meant for her and when we got
in the car, Courtney asked if she could put the money in our account for
Ecuador. If you remember, Courtney was the one we were most concerned
about whether or not she would want to come to Ecuador. As each week goes
on, she talks more and more about going with increased excitement.
We leave Friday to go visit a friend in Georgia we met at the GIC our
church held last month. Praying that the girls enjoy being there (and
that they sleep well and eat the food offered to them).
Love,
Celeste
Monday, March 26, 2007
Valerie Grace turns 3 years old
Today Valerie Grace is three years old! The girls have been busy sewing
gifts and regifting their treasures for her.
This weekend in Georgia was filled with many wonderful lessons - We drove
up there feeling very well. Craig and Jonni Snyder took us out to a seafood
restaurant and Valerie Grace started feeling unwell, so I took her to
the van and she threw up all over Craig's coat. We then went out for ice
cream and once we returned to their home, Brooke threw up. (not looking
good). Then late Friday night I threw up. I was truly humbled and learned
so much about hospitality as the Snyder's assured us they wanted us to
stay. Saturday we spent the day with their son and daughter in-law and
their 3 children. I was in awe of how they invited us in (knowing we had
been throwing up the night before) and just loved us. We were then getting
in our van to head back over to the Snyder's home for a large dinner with
the children and grandchildren, when Natalie Joy threw up on my coat in
the van (good thing I packed our coats!). We arrive at their home and
ate dinner (after bathing Natalie Joy). At this point Craig let me know
that he agreed to come on this trip as a test - to see who's judgment
could be trusted more - mine (I wanted to go) or his (he did not feel
comfortable). He let me know it wasn't looking good for my side as he
laughed. So Saturday night, Craig's tummy is not doing well, but no vomiting.
Sunday morning Jonni made the most incredible breakfast and we chowed
down (our appetites were back, and no breakfast has ever tasted better
- like a Shoney's breakfast bar!) We then met all of the people from their
home church, sang worship songs and shared about Ecuador. Again, the love
we felt was overwhelming. We then had a wonderful big lunch. The girls
were feeling much better now and said they would miss being there. The
Snyder's had planned such a fun weekend for them - they went fishing,
played outside on a slip and slide, played with their dog Bonnie, ate
lots of goodies and watched lots of fun movies. Valerie Grace enjoyed
the footballs in the house (she even slept with one) and Bonnie the best,
while the other girls enjoyed exploring outside and naming the deer (heads)
that were above their beds. On the way home, Craig was still feeling pretty
wiped out, so I drove. About half way home he let me know that I had the
better judgment as far as if we should have come or not. We both agreed
that despite being sick (really sick), God wanted us there and we had
a wonderful time and grew from the experience. The main lesson was hospitality
-how wonderful that God teaches us in such a beautiful way.
April 2nd 2007
This past week has been busy. We are still waiting on a few letters before
we can send off for our visas. I have had some frustrations with delays,
questions about funding - etc. But in the end I am at peace. The frustration
comes in knowing how Patti Sue needs us down there to help now, and that
in order for these children to have a home, she needs help, but details
still have to be worked out before we can go down. But the peace comes
in knowing that God's timing is perfect. If there weren't children involved,
I imagine it wouldn't be a big deal at all - but we grew to love these
children while in Ecuador (as I imagine all people who visit do).
I spent one on one time with each of the girls this week. It has been
long overdue and we had a really great time. Sitting across Brooke today
as we ate lunch, I felt such a peace and calm. Out of all of our girls,
Brooke stands out as having a real gift of faith. And her sweetness touched
me deeply. I was thinking that we weren't really "doing" anything
fun - at that exact moment, Brooke said "mommy, I am really enjoying
this - I just like being with you". So, all of my frustration with
things not getting "done" for Ecuador were summed up - The Lord
just wants to be with me. I have known that for years now, but somehow
during this week I couldn't feel that - but now I do. When God shows me
a plan I love to see it happen all the way through (and quickly).
We found out today that the house we really wanted to rent in Ecuador
will not be available. The things we were looking forward to about this
house were that it was the only one we saw with a bathtub, it was one
story, and it was on the HCJB compound. The disadvantage was it was on
the HCJB compound. We have two more houses that we were looking into,
but now will have to find out if they are still available- I know full
well that God knows the best house for us and that He will provide it
in the right time.
Valerie Grace had an oncology appt this morning. Apparently the Lord
is working on teaching me to wait and more than that - to enjoy Him during
that time rather than viewing it as waiting. We arrived at clinic at 8am,
and were out of there at noon (I think we were scheduled for a 30 minute
time slot). Valerie's doctor was out as was another doctor. When our turn
came up, I noticed another mom at her wits end (daughter sick, not doing
well at all) so we asked if they could be seen first. During this time
we made friends with a cute little girl from Mexico.
Tomorrow Brooke and Courtney will have their homeschool evaluations done
- which should be fun.
Our latest achievement has been Valerie Grace is now using the potty
- so we are very very close to not having to buy diapers for the first
time in over 9 years.
Love,
Celeste
the God of our Lord Jesus Christ, the Father of glory, may give to you
the spirit of wisdom and revelation in the knowledge of Him, the eyes
of your understanding being enlightened; that you may know what is the
hope of His calling, what are the riches of the glory of His inheritance
in the saints, and what is the exceeding greatness of His power toward
us who believe, according to the working of His mighty power which He
worked in Christ when He raised Him from the dead and seated Him at His
right hand in the heavenly places, far above all principality and power
and might and dominion, and every name that is named, not only in this
age but also in that which is to come.
Galations 6:17-21
We now have most everything we need for our visas, and it looks like
they will be mailed out next week. We also received an email Wednesday
evening about a house that we looked at while we were down in December.
The family is coming back to the states until this coming January. While
we were waiting to hear back about the house we wanted, they found someone
else to rent their home. Well, that fell through and they offered us the
house again, wondering if we had found something yet. Just as Craig told
me, if God wants us to be able to stay in that house that it will be available
for us. The house is totally set up for being fun for children (swings,
climbing wall, loft with fireman's pole, etc. Here are some pictures of
the house (we will be staying in the upstairs part, but there is also
a guest room and bath, a school room, and a full bath off the yard that
we will have access to, while not being used by the people living down
stairs).
Last week was full of us being told that maybe this wasn't God's timing,
so I kept praying - praying for peace and continued guidance and not to
get ahead of His plan. We asked for prayer at our church family group
Wednesday night, and then boom - things have just taken off, but without
all of the worry now. I think my frustration earlier in the week came
from seeing where God wanted us, but not seeing anything happening. If
I had felt that we were not supposed to go, all of the things not working
out would have made more sense to me - but now looking back - it is so
easy to see His hand.
Over the past few weeks I have come in contact with several Jehovah Witnesses
(at my door, online, and at our yard sale) who are moving to, or know
Jehovah witnesses in Ecuador. Which has once again opened my eyes wider
to the bondage people are in and the reason we are to share the Good News
(here, in Ecuador and around the world). For the word's Jesus spoke -
"it is finished" ring true today - it is finished, there is
nothing else for us to do in order to earn His favor. And the word's my
sweet Craig said before we were married - "Being a Christian is not
a religion it is a relationship". Praying that we all come to an
even deeper understanding of how much He loves us as we remember His death
and resurrection this week.
Love,
Celeste
But when the kindness and the love of God our Savior toward man appeared,
not by works of righteousness which we have done, but according to His
mercy He saved us, through the washing of regeneration and renewing of
the Holy Spirit, whom He poured out on us abundantly through Jesus Christ
our Savior,
that having been justified by His grace we should become heirs according
to the hope of eternal life.
Titus 3:4-7
Thursday, April 12, 2007
It's all coming together
The land purchase in Ecuador has been finalized. At the last minute, Patti
Sue decided she should buy all 3 hectares rather than the 2 that funds
were donated for. So for the next 6 months we will be able to see how
God provides for the rest. Now praying for teams to start planning to
come down to help build homes for these children.
I have spent part of the week trying to get some other opinions on Valerie
Grace. We have not heard from Valerie's oncologist since the MRI last
month. We feel like we have turned over every stone we can, and God is
saying to trust Him. Since Valerie was diagnosed, her medical case has
been reviewed by 8 neuro-oncologists, 7 neuro-surgeons, and presented
at tumor board meetings of 4 different hospitals worldwide. The tumor
tissue that was removed was viewed by 4 pathologists including Peter Burger
- the one who first described her type of tumor and agreed to do the research
for her tumor type. We have looked into alternative treatments as well
from 4 different sources. I write all of this for those who have concerns
that there is something we should be doing medically, but aren't. Valerie
Grace continues to do very well - seeing, playing, talking (in English
and some Spanish now too!)
The girls' homeschool evaluations went very well, and it was fun to look
through all they have done this year and see how they have grown academically
and in Christ.
We now have everything we need for our visas and after speaking with
the consulate in DC were told mailing our passports and papers in would
be preferred to us coming in person. They estimated that it should take
them a week to process.
The thought of getting our home ready, vehicle sold, buying plane tickets,
placing some of the animals in new homes, etc seems like so much to do
in so little time, but I know the Lord will work it all out. Our neighbors
daughter has agreed to stay in our home and pay the expenses on it, so
there is no need for us to move everything out (which is great). We will
then also have the option of coming back and staying in our home for how
ever long we need to, at a moments notice.
We will have DSL in the home we will rent for 6 months in Ecuador . We
have already signed up for a VOIP phone with a Gainesville phone number.
We will be able to call anywhere in the US for free and friends and family
can call us without incurring charges.
We were able to get the girls all health insurance and have paid that
for the year.
I keep running to God - asking for Him to show me in big ways that this
is His plan ( Ecuador ) for us. After filling up two pages - single spaced-
in my journal of specific ways He has show me, I continue to ask at times
of doubt and He continues to answer in BIG ways. Not all of my prayer
requests get answered the way I want (I wanted and believed Valerie's
tumor would be gone before her first surgery two years ago...and many
times after), but He continues to reveal Himself and His plan in a way
that is unmistakably so full of LOVE! I think Beth Moore sums up what
He keeps showing me really well:
"Life shouldn't be a journey to the grave with the intention of
arriving safely in a pretty and well-preserved body, but rather, to skid
in broadside, thoroughly used up, totally worn out, and loudly shouting,
"'Wow! What a ride! Thank You, Lord!'"
Valerie had her MRI
yesterday morning at
7:30am. She did very
well, but took a
while to come out of
sedation and was
very very cold (well
below normal body
temp). Her
oncologist called
today and was
encouraged that the
tumor and cyst are
very stable.
I went to the
surgeon yesterday
and have two hernias
that need to be
surgically
corrected. They are
about 4" apart. If I
decide to have the
surgery done, it
will be May 16th,
and I will not be
able to lift
anything for 6
weeks. I really
think I am supposed
to have it done.
It's just another
bump (or two) in the
road, and I really
don't see this as
being a big deal.
Our visas came back
in record time and
were fully approved
starting last week
(and good for a
year). But with the
hernia surgery, it
may be July before
we can get down
there safely.
I also went to the
eye surgeon today
and my vision is
20/15 in each eye
and even better with
both eyes open. What
a miracle!
Last week we were
pampered on Valerie
Grace's wish trip.
The girls had pony
rides, unlimitted
merry-go-round
rides, free ice
cream all day long
(after breakfast
sundaes, pre lunch
root bear floats,
etc - the shop is
right in the middle
of the village so
everytime a child
walks by they can go
in a get ice cream),
free pizza delivered
to our room at
night, free
breakfast buffet,
carriage rides,
remote controlled
boats, a huge model
trail set, a winter
wonderland night
with fake snow, a
pillow making
machine, fishing,
miniature golf with
all sorts of neat
effects, pools,
movies with free
popcorn and icees,
and a "village Idol"
night where Valerie,
Brooke, and Courtney
got up on stage and
sang one of their
Spanish songs into
microphones while a
packed theater
cheered them on.
It
was very special and
we all had a great
time. We were also
given free passes to
Sea World, Animal
Kingdom (Brooke was
able to see her
favorite animal
close up - an
okapi), and Disney
(we only used 3 of
the 6 days worth of
passes we
were given, as we
enjoyed the village
where we were
staying so much).
The website for the
village is
http://www.gktw.org/
. There is a
wonderful story
behind how this
place started. We
were amazed at all
of the love shown to
us and the other
families there.
There were families
from all over the
world - some
families had adopted
special needs
children with life
threatening
illnesses. It was
amazing to see the
strength in these
families. One night
they gave each child
a bear - the bear
had a tag with the
gospel message in it
(these are the bears
that are shown in
Family Christian
Stores that go to
children all over
the world). There
were Bibles in
Engligh and Spanish
in every families
villa, there was a
chapel on the
grounds as well.
Another special
treat for us was
that a good friend
we have met and
grown close to who
is a doctor and also
has a daughter who
had a brain tumor -
her parents were
volunteers at the
village. It was
wonderful to see
them again. We felt
very spoiled and a
little uncomfortable
with all of the
attention and
goodies - but the
girls had a
wonderful time and
it was a very
special time for
Valerie Grace.
I went to our church family group last
night and asked our friend (who is a
doctor) about his recommendation. He
recommended another surgeon who might be
able to get me in more quickly. I called
this morning and the doctor was able to
see me this afternoon. On my way there,
I prayed that if God wanted me to have
this done - that the doctor would be
able to do the surgery tomorrow, that he
would use a better surgical technique
that did not require sewing the muscle.
Surgery is scheduled for tomorrow
morning (I go in at 9:30 and surgery
should start around 11:30 or so). The
extra bonus is that I won't have the
major restrictions, and I will not have
stitches (they do somesort of surgical
tape instead). I am really excited about
going in and getting this done and feel
good about it all (but still praying
that all goes well).
Patti Sue has had a difficult week - a
major stomach virus is going through all
of the children there and Richard went
to be with Jesus this week. Marlin in
scheduled for surgery tomorrow. Please
keep them all in your prayers.
Love,
Celeste
Friday, May 11, 2007
My surgery ended up being a little more
invasive than what was planned, and it
looks like I will have a 6 week recovery
and 6 months before the lump on my
stomach caused by the surgery is gone.
But after 2 weeks I am feeling better
and able to walk around easily. God has
been teaching me a lot through this and
I think when all is said and done I will
be thankful that I had this done. A
really nice perk is that it was 100%
covered by insurance (and would have
been over $23,000 otherwise). Amazing,
when I think about how cheap this
surgery would have been in Ecuador. Not
real sure why the prices here are so
high. Valerie's last MRI would have been
well over $10,000 without insurance, but
in Ecuador they are around $600.
My mom was here the first week after my
surgery to help out and this past week
we went to the beach with Craig's
parents. It was a really nice break for
me and I was able to get lots of rest
and my stomach feels much better.
Valerie Grace will be deported on the
29th (she is having her mediport in her
chest removed - this was used during
chemo and requires monthly flushing with
saline). She has complained occasionally
about the port, so we look forward to it
coming out. All four girls go in for a
regular doctors visit and teeth cleaning
tomorrow.
I still cannot lift anything - so
packing is going to be a challenge, but
Brooke has been happily helping out
after the other girls go to bed. Having
this surgery has really slowed me down,
which is a very good thing. My sweet
friend Sue went to my after surgery
follow up appointment with me today and
the doctor said I was good to move
down.We are expecting to move down to
Ecuador mid June.
We really would appreciate your prayers
as we prepare to go to Ecuador. I would
specifically appreciate prayers for all
of the small details to get worked out
easily and that my focus would not be on
the packing and preparations, but on the
Lord Himself - that I would rest in Him
each and every day. That we all will be
vessels of Joy down in Ecuador. Oh - and
that we pick up the language quickly!
The girls are all very excited and
really see this as being God's will for
our family. We are so thrilled that our
church (The Family Church) is playing
such a large role in our being able to
go down and covering us in prayer. We
look forward to having lots of visitors
(just let us know if you are interested
in coming down for a visit!).
If you’ve been following our website,
you know that we’re just about ready to
leave for Ecuador. We are so excited
about how God is going to let us be a
part of in this ministry! We just bought
tickets yesterday, and we’ll be flying
out of Miami on June 12th. My parents
(Bob and Sara) will be going down with
us and staying for a week to help us get
settled in. It will also be their first
trip to Ecuador, so you can pray that
God will make it a beautiful experience
for them.
We’ve had several people that have been
following our story and asking us how
they could help. So here it is. First
and foremost, we need prayer. Most of
you have been praying for Valerie, some
of you for over two years, and for that
we are more grateful than you can
imagine. There have been many days when
I just couldn’t pray for her for one
reason or another, but I took great
comfort in knowing that she was covered
in prayer. And those prayers have not
gone unheeded. God has done wonderful
things through her. We’ve seen her optic
nerve heal so that her “bad” eye still
tracks with her good eye. We’ve seen her
good eye go from where the eye doctor
said she wouldn’t be able to see out of
it much longer to where, at her last
test, she was seeing 20/20 with it. We
got through 14 months of chemotherapy
with no side effects. There have been
times when I thought, “What are you
doing God? Why are you prolonging this?
It’s cruel of You to let us grow to love
her more and more if You are just going
to take her from us.” But lately, my
thoughts have been, “What are you going
to do next God? I’m excited to see how
you are going to amaze me next through
this little girl. Thank you for doing
things the way you do.” Saints, your
prayers have all been a part of this, so
again I thank you. And I would ask for
continued prayer, not only for Valerie,
but for Natalie, Courtney, Brooke,
Celeste, and I as well as the children
in the orphanage and the building
project.
Next thing you can do is consider coming
down to Ecuador on a short term mission
trip. We aren’t set up for it right now,
but we have people coming down as soon
as August. There are so many benefits to
short term missions. The first and
foremost goal is for you to have a
special opportunity to meet up with God
in a different environment. If you’ve
talked with people who have been on
mission trips, you have undoubtedly
heard how it changed them. There’s just
something about serving God outside of
your comfort zone. Another benefit is
that you get to help us with the work we
have to do. We will have abundant
opportunity to help with building
projects: clearing land, building fences
and walls, and working on houses. There
is also unlimited opportunity to
minister to these children by just
spending time with them. And for those
with special interest in mission
aviation or mission hospital work, both
the MAF airstrip and HCJB mission
hospital are here in Shell and can
always use volunteer help. Additionally,
these trips help to rise awareness for
the orphanage. The building project that
has been proposed is a big one and will
take a lot of resources and labor to
complete. Eventually, we would like to
see churches or other groups sponsoring
the construction of different buildings.
Raising awareness of what is going on
with the orphanage is the first step in
being able to fund the project. Our goal
with short term missions is that people
would come and see what God is doing in
Shell and would go back and tell others
who would then want to get involved in
one way or another.
Which brings me to the final way that
you can support us. We decided early on
in this endeavor that we weren’t going
to go begging for financial support. It
wasn’t that we were too proud to do it,
but that we didn’t want to put people on
the spot or make people support us out
of guilt. I am strongly opposed to
anyone supporting any ministry out of
guilt. God has plenty of money and He
can provide for us in whatever way He
wants to, but I know that He often uses
the Body of Christ to support these
kinds of ministries. We have a planned
annual budget of $40,000 for the six of
us. That includes rent, food, insurance,
travel expenses, etc. Our home church
(The Family Church, Gainesville, FL), is
providing approximately one fourth of
that budget, for which we are very
grateful. Of the remaining $30,000 we
still need to raise we have, to date,
raised just over $600. So, we will be
living off our savings for a while,
which is fine because God has provided
that for us. But if you think you would
like to help support us financially,
please pray about it and ask God if
that’s how He wants you to get involved.
The details on how to do so are on our
website (www.thewelchfamily.org).
Just click on the blue box that says,
"Click here for information on how to
support our ministry".
We will also be starting a mailing list
soon to mail out updates on our ministry
(on real paper!). We will also be
continuing our email updates as well as
our website. So if you would like to be
on our mailing list (the paper one),
please email us and let us know. You are
already on our email list or you
wouldn’t be reading this, but if you
would rather just be on the paper
mailing list, then let us know that too.
We do plan on keeping both lists going
while in Ecuador. Also, I know that
several of you have been forwarding our
email updates regularly to friends and
family. So if you got this as a
forwarded message, you are also welcome
to sign up for our mailing list, either
the email one or the paper one (Did I
mention it will be on real paper?).
Well, that's all the new information I
have right now. I'm going to get back to
helping Celeste make packing lists to
figure out just what all we want to take
down.
Please keep Valerie in your prayers as
she will be going in on Thursday to have
her port removed from her chest. This is
a minor surgery, however, the last few
times she was under sedation, it seemed
to take her longer to come out of it.
She had a minor rash from the Measles
vaccine, but it didn't slow her down one
bit, and other than a few bumps that
seemed to itch slightly, she had no
other issues.
Brooke and I went back in to the chemo
clinic today to pick up some medical
supplies we thought would be nice to
have and a doctors note allowing us to
take water and medications on the plane.
It is truly amazing to me how when
Valerie was on chemo, our visits there
were so nice - I never noticed children
crying, Valerie loved being there -
loved having her temperature taken, her
ears looked in, she loved opening her
mouth wide so the doctors could check
for anything unusual....God wanted us
there then. Today, when I went back in,
Brooke and I didn't even go in the
actual infusion room - the crying coming
from the room almost knocked us down
when we cracked open the door - so we
shut it and waited outside. A little
thing, but God uses little things in my
life to give me confirmation of His
plan. He allowed me to clearly see that
this is not where we need to be now,
that what we heard from Him early is
indeed true.
It has felt weird not going to clinic
every week - we actually missed being
there for a while, it had become such
normalcy for us. But, we clearly see
that this is God's plan for now - not
having to go in monthly to have her port
flushed, not having to starve my child
the night before and morning of an MRI
every 2-3 months, not having to worry
about blood counts, etc. It is scary
though from a worldly stand point and
yes, it feels like a huge leap of faith,
following God's plan for us now and
packing up and moving to Ecuador.
I read the following this morning -
Many, O LORD my God, are Your wonderful
works Which You have done; And Your
thoughts toward us Cannot be recounted
to You in order; If I would declare and
speak of them, They are more than can be
numbered. Psalm 40:5
And I think back at times about all of
the things that have been shown to us
over the past year, confirming that this
new path is God's plan...and they are
more than can be numbered. Yes, I
believe we have seen miracles through
Valerie Grace. Does that mean that
everything will be easy, does that mean
that if we just do what God wants that
life will be perfect and easy - I don't
think so. But, I do believe we will grow
closer to the Lord through this and my
prayer is that our focus will stay on
Him, not on our safety, not on the job
we think He has for us, but on Him. The
excitement continues to grow!
Love,Celeste
Thursday, May 31, 2007
Valerie's surgery went well. We got
there around 7:30am. She played in the
play area for a while, went for walks
with Daddy and Grandma, and she went
back for surgery (in my lap) around
lunch time and was done about 15 minutes
later. It was a really great day. We saw
Valerie's wonderful neurosurgeon and
neurosurgery nurse in the hall way and
were able to tell them both good bye and
thank them for all they have done for
us. Her neurosurgeon asked us to please
keep him posted about the orphanage and
if there is any way he can help by
coming down to do surgeries. We are so
greatful that Valerie had such a caring
neurosurgeon (we all loved him) and for
her oncologist who loved her also.
We stopped by the MRI building to say
good bye to the sedation nurse who we
quickly became friends with. We also saw
a sweet lady we knew via email who had
kept up with Valerie's story. It was
just a really good day, and we saw so
many familiar faces. Valerie no longer
has a port that will require her to go
in to see the doctor monthly. Valerie is
relaxing now and eating some lunch in
bed.
On top of everything else, Valerie's
surgeon was able to get us a feeding
tube for little Marlin at the orphanage
who has been using a foley tube for
feedings. I think after he heard the
story of who it was for, he felt
compelled to help out.
I realized that we might have given out
the incorrect phone number to everyone.
Our new number is SKYPE:SPAN
onmouseup="javascript:skype_tb_imgOnOff(this,1,'0',true,'');return skype_tb_stopEvents();"
class=skype_tb_injection
oncontextmenu="javascript:skype_tb_SwitchDrop(this,'0','sms=0',true);return skype_tb_stopEvents();"
onmousedown="javascript:skype_tb_imgOnOff(this,2,'0',true,'');return skype_tb_stopEvents();"
id=softomate_highlight_0
onmouseover="javascript:skype_tb_imgOnOff(this,1,'0',true,'');"
title="Call this phone number in United States of America with Skype: +13522755330"
onclick="javascript:doRunCMD('call','0',null,0);return skype_tb_stopEvents();"
onmouseout="javascript:skype_tb_imgOnOff(this,0,'0',true,'');" durex="0"
context="352-275-5330">352-275-5330 - this
phone should work while we are here and
in Ecuador. It is a local Gainesville,
FL number. Our email address will remain
the same and we hope to have a mailing
address soon.
Thank you all for your prayers!
Love,
Celeste
Thursday, June 7, 2007
We have decided to drive to Miami during
the day on Monday. We will then stay in
a hotel at the airport and be able to
sleep Monday night (in theory).
Randy Busby from our church generously
is allowing us to use his van to
transport all of our luggage (Bob and
Sara will drive it down). Then Randy and
his wife will drive it back to
Gainesville after we have been dropped
off. Bob and Sara will then have our van
at the airport to drive back to
Gainesville in a couple of weeks. Patti
Sue will then meet us in Quito Tuesday
around lunch time and we will make the 5
hour drive down to Shell.
As expected, we have been met with some
obstacles this week (though small).
Natalie Joy developed an unexplained
high fever with no other symptoms - but
is doing great now. I developed a cyst
in my wrist - but feel much better now
after having it drained. Valerie Grace
is doing very well after her surgery.
She should be able to take a bath this
weekend (her first since the surgery)
and the glue holding the incision closed
should fall off the day we leave.
Thank you to everyone who has faithfully
kept us in your prayers, we feel them
and are so thankful for all of you! And
thank you to everyone who has given to
our ministry finacially - we stepped out
in faith, arranging our trip before
having support to go. We had a young
lady come up to us at church this
weekend and hand us an envelope.
Including what was in that envelope - we
will now have enough in our account to
cover our expenses for two months (to
the dollar).
We also met a young man at church from
Ecuador. He told us how he had been
praying for a church home and praying
for Americans to go back to his country
to serve the people there. Last
Saturday, he attended the Family Church
for the first time. He said he loved the
worship - then heard the word "Ecuador"
spoken for the first time since coming
to Gainesville - then saw us up front
telling how we are going to Ecuador to
serve the people there. Wow - God
continually amazes me, how He can
orchestrate life like that. And how neat
that He allowed us to hear how God had
spoken to this young man - it was a real
encouragement to us.
We would really appreciate your prayers
for all of the details to continue to
get worked out - for us to make it in
and out of the airports with all of your
children and luggage. And prayers for no
one to get sick on the plane. Last time
we sat behind a little girl who threw up
the whole way home, there was little we
could do but pray for her and give the
family a plastic bag. Thankfully our
children did amazingly well, even
throughout the drive down the Andes (no
one even asked for a potty break!). We
know we had many praying for our trip
down in December - and thank you all for
covering us. I remember when Valerie
started to fuss when the plane was
taking off - I told her "take a nap".
She turned her head to the side, closed
her eyes, and took a nap. No, this was
not due to good parenting, I believe
this was totally because of all of your
prayers - she had never done that
before!
We were able to sell most of our big
things - thankfully the saltwater tank
and bees sold quickly - I don't know how
we could have left those here.We are
still trying to sell Craig's car - the
wholesale cost of the car is 17,900. If
anyone is interested, please let us
know.
http://www.flickr.com/photos/candcwelch
We can sign over the title immediately
up until Monday morning. We also still
have the generator.
Love,
Celeste
Saturday, June 9, 2007
We are just about packed, and are very
ready to go.
We have a couple of prayer requests.
Brooke now has a fever - we are assuming
it is the same thing Natalie Joy had 6
days ago. It seems to knock them totally
out. Praying that Brooke feels better
and everyone else stays well for the
trip.
Patti Sue wrote us the following
yesterday - "There was a huge ash slide
in Baņos and we were held up almost 2
hours while they dug it out. We have
been having lots of rain thus lots of
mud slides. Add to your prayers a clear
road for me to get up there and us to
get back." The big volcano eruption in
Baņos last year dumped tons of ash on
the road (and everything within sight in
the area). Now, with the heavy rains,
there have been lots of mud (ash)
slides. A couple of weeks ago, the road
was closed for over a day. Please pray
not only for our luggage to make it but
for us to make it safely to Shell also.
Always an adventure!
Craig's parents, Bob and Sara, will be
accomanying us down and staying with us
for about 10 days. We are very thankful
that they are coming and pray that the
Lord will use this time to strengthen
our relationship even more.
Our contact information for Ecuador is
on our website
www.valeriegrace.com/contact.html
Address -
Craig and Celeste Welch
Casilla # 16-01-854
Puyo, Pastaza
Ecuador, SA
I know that our girls would love
receiving mail from friends and family.
If mailing items, please be aware that
postcards, letters, and padded envelopes
will arrive safely and often we will not
have to pay customs on them. If sending
items requiring a customs form, please
mark the form as "gift" and no
commerical value. Please do not insure
the package. Thank you! You are also
welcome to send small packages to the
children at the orphanage. Please try to
keep the padded envelopes small and
under 1lb. Mail normally takes between
1-4 months to arrive (4-6 weeks being
the most common senario).
Thank you for your continued prayers for
our family. We are very excited, and
ready!
It has been raining all day today.
The marmoset jumped on Brooke's head
today and ran all up and down her
body. Much to her delight. The
chicks made it through the night.
The girls gave them some umbrellas
to sleep under and banana leaves as
a nest. They ate some left over
breakfast the girls had this
morning. Valerie, Craig, and I went
with Patti Sue and Inez to Puyo to
buy vegetables. The girls have
enjoyed eating grapes and watermelon
and think that the seeds inside are
very neat (like getting free gifts
to plant).
Wednesday June 13
We arrived here in Shell last night.
It was a definately more stressful
than the last trip down. Last time
there no one even needed a potty
break (I think we stopped 3 or 4
times on our way from Quito to Shell
alone). The airport and luggage
situation was intense - Everything
made it through safely, but it was
constant "doing" and when we arrived
at the gate in Miami they were
already loading the plane (we
arrived to check in 3 hours prior).
The girls and I took care of all of
the carry ons, while Bob, Sara, and
Craig each had a small cart, piled
high with about 250lbs of luggage
each. They then had to push this
down hills and around turns to
customs where they had to start
putting each piece through the xray
machine individually - until they
got to Sara - they saw her face and
waved her through.
No one got sick which is a huge
praise, and we arrived just prior to
another road closure from a
landslide. The senery on the way
down has totally changed due to all
of the landslides. When we arrived,
Patti Sue and some of the other
missionaries had gifts for the
girls, and a warm dinner ready
(Valerie Grace ate tons of the
beef). We were lacking water, but
Craig was able to fix the pump
today.
We also had a young lady named Maria
come by. She is going to be helping
us - and the girls absolutely adore
her. She is so helpful and I really
don't know how I could have gotten
through this day so easily without
her. She is Quichua, but speaks
Spanish also, but no English. So
this is great - as I really want to
be able to communicate with her
better, and we have no option but to
learn Spanish.
Patti Sue surprised the girls with
two chicks today (that are running
around the yard). We were also
visited by a marmoset that lives
next door. It ran upstairs, then
jumped all around. The girls were
delighted. Later on the girls made a
nest for the chicks out of banana
leaves and dressed them up with
other plant leaves. There is also an
amazon parrot on the other side of
the house we are in.
Valerie Grace is sleeping now, but
the other girls are up playing.
Hoping we all catch up on some much
needed sleep.
We are excited to be here, but did
feel some initial stress and know
that that does not come from the
Lord - it will be exciting to see
how things go.
We stopped by the orphanage today,
and had fun with the children.
Courtney danced with Nathaniel, and
the girls visited Maribel. Little
Nicole held my fingers tight and
eventually fell asleep with me
holding her. Valerie Grace had a
blast saying "hola" and "adios" to
all of the children - then said
"lets hola some more".
Love,
Celeste
Saturday, June 16, 2007
Natalie Joy turned 5 today and is very
excited about turning 5 in Ecuador. She
is playing now with her presents we
brought down for her and her cake is
baking.
We are continuing to adjust to life
here. We went over to the house of some
MAF missionaries for dinner last night
and the girls enjoyed playing with their
two boys. We also went by the Nate Saint
school library and were able to check
out some books for the girls to read.
The girls are enjoying meeting new
people and talking with the Ashuar
children who live next door to us. The
little monkey - which is actually an
endangered tamarind - continues to run
over to play with the girls (it
especially likes getting tangled up in
Brooke’s hair.)
A man involved in construction in town
came over to talk with Patti Sue and
Craig today. He agreed to work for Casa
de Fe full time, as he knows where to
find people locally to work on the
building and land preperation. He is a
Christian, is married and has two
children (one special needs). He has
agreed to take a cut in his pay to have
something reliable and steady and that
involves helping the community. He
agreed to work for $400 per month full
time. Please pray that we will find the
funding for this amount - we really see
his agreeing to do this as the Lords
plan - he was recommended by many in
town, who said they thought he was too
busy and made too much money to agree to
help with the orphanage construction.
Bob and Craig went out to the land
yesterday (which is very muddy now -
they were guessing about 8" deep in
spots) and cut down a path along the
back property line with machetes. The
first part of the project is to get a
line put up so we can get an idea of
where the boundries of the property are.
The grass is taller than I am right now.
We are also realizing our need for a
vehicle here, please continue to pray
that our car in FL sells so that we can
look into purchasing something used
here. It has been raining since we
arrived and we have not been able to get
out without riding in someone’s car
(there were 9 of us in Patti Sue’s 5
seater blazer today - not the safest or
most comfortable thing over the rocky
roads here). It is also near impossible
for me to walk with all 4 girls to the
grocery store in town and carry more
than a few light items back. Many places
we need to go are in the next town over
and we cannot walk there, and carrying
groceries back on the bus is difficult
and there are two many of us for a taxi.
It has been neat to see God provide this
far, and we know He will provide for all
of our needs. We are enjoying the house
and have gotten in the routine of
boiling water to drink until Craig can
get a filter hooked up. Natalie enjoyed
her bath in a large plastic bowl today,
and we are continuing to remind the
girls not to drink shower water or use
the water from the sink to brush their
teeth. I am so glad that we kept track
of all of the ways God has shown us this
is His plan. Our expenses to date have
been over $7000. Not only are we having
to pay for our own expenses but also for
construction supplies (machetes, wire
fencing, etc). To date we have just over
$1200 available to us. Please pray that
things work themselves out stateside to
ease the finacial burden. Our phone is
not working, we know we have had some
calls, as there are voice mails - but we
have no way to check them, but we thank
you so much for your continued prayers
for us!
In Christ,
Celeste and Craig
Sunday, June 17, 2007
I have been really encouraged by the
Lord the last 24 hours. I really went
from discouragement to real
encouragement. I was so looking at the
physical aspects of God's plan and it
was overwhelming. The plan is huge - and
at times seems so impossible - but the
Lord really encouraged me last night and
this morning as I spent time alone with
Him. That yes, on our own, this is
impossible - but with God - all things
are possible. I have seen Him restore my
daughter's sight, I have seen the work
He has done in my own life and surely
these things are impossible without
God's hand.
Throughout the day today, I have felt
physically worse though, and really feel
it is an attack - for everytime I seem
to get real excited about what the Lord
is doing, something will come along to
physically slow me down - however, this
only provides more time to spend alone
with Him. Natalie has also developed
another fever (though not high), and
Brooke and I continue to have a
persistant cough and head congestion.
Patti Sue is going to call and get me an
appointment at the local hospital, just
to make sure it is nothing bacterial. I
am so thankful Sara and Bob are here -
Sara prepared a wonderful dinner. Patti
Sue has been so helpful to us as well,
really doing all she can to help us feel
at home and adjust to a new culture
(which we are loving - Craig even had
his first taste of driving in Ecuador).
Continuing to pray that our eyes stay on
Him, not on our own bodies, not on the
plan, but on Him and Him alone.
Thank you for your continued prayers for
us, for the encouraging emails and
scriptures (each one of them spoke to me
and really went right along with what
the Lord was teaching me today). I am so
sorry I haven't been able to email
everyone back - but have really been
touched and encouraged by every message
sent - we feel your prayers and we thank
you!
"For none of us liveth to himself,
and no man dieth to himself.
For whether we live, we live unto the
Lord,
And whether we die, we die unto the
Lord:
Whether we live therefore, or die, we
are the
Lord's." -Romans 14:7-8 (thank you
Christine)
"But they that wait upon the LORD shall
renew
their strength; they shall
mount up with wings as eagles; they
shall run,
and not be weary; and they
shall walk, and not faint." Isaiah 40:31
(thank you Nikol)
"He who dwells in the secret place of
the Most High shall abide under the
shadow of the Almighty. I will say of
the Lord, "He is my refuge and my
fortress; My God, in Him I will trust."
Surely He shall deliver you from the
snare of the fowler and from the
perilous pestilence. He shall cover you
with his feathers and his wings you
shall take refuge; His truth shall be
your shield and buckler. You shall not
be afraid of the terror by night, nor of
the arrow that flies by day....Because
you have made the Lord, who is my
refuge, even the Most High, your
dwelling place, no evil shall befall
you, nor shall any plague come near your
dwelling. For He shall give His angels
charge over you, to keep you in all your
ways." (thank you Sue)
Lots of Love,
Celeste
Wednesday, June 20, 2007
Bob and Sara are in Quito now and will
fly back to Miami in under an hour. We
really enjoyed them being here. I have
started back up homeschooling and Craig
has been going out to the land daily. He
is cutting paths and walking the land to
figure where things can go and exactly
what is needed (a couple of bridges is
first on the list). Before we came last
time, my friend Mardy's son Stephen
suggested we bring walkie talkies. We
did, and left them down here - it is so
nice to have them. It is like having
cellphones, because Craig and I can talk
no matter where we are in town. He was
at the back of the property today and
told me he was wet but okay (the
property is full of hills, deep mud,
virgin rainforest in the back corner,
and rivers). It is so nice to have a way
to communicate with him, especially when
he goes up there alone. There is a
Quichua man who watches the property
below the Casa de Fe land. He started
walking up to check on Craig and said
what Craig thinks is "what happened to
you"? Craig explained he got rained on.
Craig was soaked from head to toe,
carrying a machete, and looked rather
pitiful once he arrived back home. But
he is really enjoying the work God has
for him. And I am really enjoying being
here as well. I looked out the window
today at the clouds pouring over the
mountains that can be seen from our
windows - it looked like marshmellow
cream flowing down the tops.
The girls are really enjoying there time
here too - and God seems to really be
teaching Brooke some things, it is
really neat to watch.
When I was out on the clothes drying
porch tonight, I looked down and saw the
family next door all gathered around
their dining table for dinner - I am
guessing there were 8 adults, 6 had
children on their laps - lots of smiling
and laughing while I looked down. The
Lord just used lots of things today to
show me that we are right where He wants
us.
Casa de Fe has two more children now
(see Patti Sue's update below). Craig is
over there now moving stuff around and
building a wall between the living and
eating area in the house to make an
extra bedroom out of the eating area.
Please keep the children in your prayers
as it is getting more crowded than it
already was.
Love,
Celeste
Yesterday I took Craig’s parents to the
airport in Quito expecting that when I
returned there would be a new little
boy, Boris, at the house. While we were
still on our way to Quito Ines called
and said that Boris would not be coming
right now but maybe next week. Well when
I got home at 8:30 pm I was surprised
with the addition of not 1 but 2 little
boys. Luis, 3 and Dennis 19 months,
brothers who were found living in a 3 x
3 meter room, naked, their food left on
the floor for them to eat and only a
sheet to cover them while they slept on
the cold bare floor. There mother left
them alone from 7 am to 10 pm while she
went to work. They were very dirty when
they arrived but were both cleaned up
sleeping in beds dressed in pajamas and
clean blankets when I got home. This is
what your prayers make possible. God
bless you.
So this puts us up to 23 children. We
are moving some things around today to
fit everyone in but we really need to
get going on the construction. After
talking to my board of directors and
Craig we have decided to start on the
Multi-use building as that is a large
building with a kitchen and 4 small
apartments on the upper floor and with
the completion of this building we could
move all the kids to the property
together and out of rented and very
crowded facilities. We need teams and
money. I hate to put that so bluntly but
I think it is good for you to know how
to pray. I believe that God is saying to
me "Trust me I have a great plan and
want only the best for you my children"
Marlin is doing great and I haven’t had
any children in the hospital for almost
a month. Please keep her in your
prayers.
God bless you all I would love to hear
from you.
In His grasp
Patti Sue
It stopped raining for a little while this afternoon. Natalie Joy
decided to invite the children next door over to share her birthday
chalk. Four children came over and had a really fun time drawing
(especially drawing pictures of me). They then drew pictures of
themselves and wrote their names. Our girls had a lot of fun seeing some
new faces and playing outside. The monkey belongs to one of the girls.
Today we all 6 went for a walk to
the military grocery store. It is
about at the top of the hill and
across a street. I was pushing the
two little girls in a stroller.
Patti Sue told us that the road from
Ambato to Shell is closed for three
weeks, so there might not be as many
deliveries during that time. We also
stopped at a bike shop across the
street to pump up the flat tires on
the stroller - There was a little
girl there who took to Valerie. We
got a lot of attention today -
having 4 girls. Valerie had to go
potty, so we walked around the store
to the back and got a military
escort through one of their airplane
hangers (I think) and to the
bathroom - and then back out. All of
that and Valerie decided it was a
false alarm. We ended up buying some
sugar, laundry soap, apples, and
bread.
Patti Sue took me to the meat
market. She drove by and saw that
they just had
a cow delivered, so called to ask if
I wanted to go down with her to buy
some. A man out front was cutting up
the non-red parts and people were
coming and taking tongue, tripe, and
other parts. I opted for a nice lomo
(a roast type piece of meat). Patti
Sue bravely bought a foot, as the
store owner told her it has lots of
vitamins and is good for children.
I also took a picture of the bowl of
chicken heads and feet. I think the
feet might actually be good in soup
- not quite sure about the heads
though. The meat is very fresh which
is nice and I haven't noticed flies
or a smell.
This afternoon, our girls were
playing outside and I noticed the
children from down the street
looking in saying "hola, hola" and
talking to our girls. I went down
and Brooke asked if she could invite
them over again. I told her in my
pitiful Spanish what to say and they
obviously understood as they became
very excited and ran to the gate.
They are all very sweet and enjoy
playing with our girls. We keep a
close eye on everyone, as we don't
want anyone to get hurt playing, and
I noticed their parents keeping an
eye on all of us too while their
children were over here (which is
nice). They also understood 'who
wants a cookie' too. I have been
really impressed with how kind the
children are to each other and to
our girls. They also leave sweetly
when we tell them it is time and
wave and yell goodbye as they go
around the corner.
Yesterday,
Maribel and Geovani came over to
play for a while. Maribel had a
great time playing with our dolls
and Geovani really enjoyed our small
farm animals.
I went over to the orphanage today
and everytime, it seems more and
more crowded. There have been a
couple of children throwing up and
not feeling 100%, but I am always
amazed at how clean it is kept and
how the children are always dressed
nicely and there is always a good
smell coming from the pot in the
kitchen.
We signed up for Skype and then had our packet8 number transfered to
the Skype in number - so our phone
numbers are SKYPE:SPAN
onmouseup="javascript:skype_tb_imgOnOff(this,1,'0',true,'');return skype_tb_stopEvents();"
class=skype_tb_injection
oncontextmenu="javascript:skype_tb_SwitchDrop(this,'0','sms=0',true);return skype_tb_stopEvents();"
onmousedown="javascript:skype_tb_imgOnOff(this,2,'0',true,'');return skype_tb_stopEvents();"
id=softomate_highlight_2
onmouseover="javascript:skype_tb_imgOnOff(this,1,'0',true,'');"
title="Call this phone number in United States of America with Skype: +13522755978"
onclick="javascript:doRunCMD('call','0',null,0);return skype_tb_stopEvents();"
onmouseout="javascript:skype_tb_imgOnOff(this,0,'0',true,'');" durex="550"
context="352-275-5978">352-275-5978 or the old number
should work now (352-275-5330).
We now have four chicks (Craig and Brooke took the bus into Puyo and
bought two more). Craig is really
enjoying the work God has for him- he is
up at the land just about everyday
working hard (they made a foot bridge
today and cleared some more land). He
also went into Puyo looking for trees to
purchase to plant on the property. The
man was very proud of his Sago palms
(which we had all over our yard in
Florida). Craig's cousin Steven has been
providing us with lots of good advice on
what to plant and how to make a "living
fence" around the property.
Craig has been doing some driving
around (which is always a bit of an
adventure). Parts of the roads cave in
often, so you need to know where to
drive and where not to drive. We have
heard about some roads falling off the
side of the mountain. Considering the
terrain here and the weather, I have
been impressed overall with how they do
the roads - it seems like a never ending
task.
Below is a movie of Maria and
Valerie.
Love,
Celeste
Thursday, June 28, 2007
We are continuing to adjust to life
here. I was starting to feel isolated,
as there are some gatherings here with
other English speakers, but they have
been primarily at night and on the
otherside of town, so we were unable to
go. Today we all took a trip on the
public bus, quite an adventure with 4
girls and not many seats on the bus. We
arrived in Puyo to buy some vegetables,
but the road to the Pastaza province got
wiped out by a land slide, so still no
fresh veggies and fruits. We plan to go
to Puyo again on Sunday and see if there
are some fruits from the jungle area
available.
We have our first team coming to visit
in less than 2 weeks. It is a family
from Iowa that used to serve in this
area short term a while back. There
church donated an oxygen concentrator
and a hammer drill, and also money for
us to build a play area. We are hoping
to be able to get a bridge built before
they come.
We had noticed lots of picking between
our girls and arguing. We have been
praying a lot and are now noticing some
changes. We are so blessed to have
bookshelves here full of great
devotionals for children. The girls are
enjoying Bible time with dad in the
morning and story time with mom in the
evening. Prayer time tonight, Valerie
Grace prayed for Maribel and for her to
know love when she is older. Brooke and
Courtney also prayed for Maribel and for
their own understanding of love. It was
a really sweet time.
Craig had a bit of fun tonight. We
brought some glo-sticks from back home.
Craig waited until it got dark and threw
one out in the street. A boy in a bike
went by, circled a few times, then
carefully picked it up, took it under a
light and looked at it. He then threw
out more and a group of children came
out and yelled in spanish (look,
look.....what is that) then yells of 'be
careful, be careful'. Last time I looked
out they were happily admiring their new
light sticks.
Anyway, we are continuing to enjoy life
here. We would really appreciate your
continued prayers - prayers for
contentment, for waiting on God's
timing...and more than that - enjoying
today for today. Also for the girls to
love each other and show some
flexibility at meal times. The food is
really really good - however we can't
afford chicken nuggets ($4 for a tiny
bag) or pizza ($30 for all of us). We
plan to try to make some homemade pizza
tomorrow with some similar ingredients
we found at various stores.
Love,
Celeste
Saturday, June 30, 2007
We lost power this morning -
nothing new seeing that our
power used to go out often the
first 7 years we lived in Archer,
FL. The nice thing is we can
still cook with gas,and we don't
have (or need) heat or A/C - so
we are not that dependant on
power. Thankfully it did come
back on though, so our chicken
in the refrigerator will stay
fresh and it is not dark in the
house now. It gets dark here
around 6pm.
Today Rubi and Nicole came over
to visit. They are both super
cute and sweet. Despite
Valerie's appearance in the
picture, she had a good time (I
think I just clicked at the
wrong time)
Later, we went to the orphanage.
Craig needed to fix a light in
the bathroom (actually replace
the fixture) and the girls
played with the children.
Last night Jyme (the man who
will be helping Craig) came over
for dinner with his wife and 3
girls (lots of girls in the
house!). They were able to
discuss some prices on the main
building. The plan is to build
the multi-use building first, as
it will be large enough to house
all of the children. It is
expected to take as much as a
year and cost $100,000 to build.
Craig and Patti Sue worked
together to draw up a plan for
the building and Jyme is going
to take it to an architect to
have official plans drawn up.
We are all doing well. Enjoying
Ecuador. Friday morning we heard
what sounded like a pig being
killed at 4:31am. Sure enough, I
looked out the window at 6am and
saw our neighbors cutting up a
pig! Then last night they were
playing music (loudly) all night
and this morning. I got up to
see what was going on, and their
main room was filled with adults
dancing, singing in a
microphone, and having, what
appeared to be, a really good
time (every one except the pig).
Thanks for your continued
prayers, phone calls, and
support. Rod and Karen and Jeff
and Michelle - what a delight to
be able to actually see you all
on the skype video phone! And
thanks to Craig S., Nikol, and
Cheryl for the phone calls. It
is so encouraging to hear from
our brothers and sisters in
Christ. We feel the prayers of
so many and we truly thank you!
Love,
Celeste
Here is a video of Natalie Joy
swinging with Jefferson (Valerie
Grace is pushing Rubi on the
swing).
Craig worked all day on the land today.
He came home for lunch all sweaty, then
went to the orphanage to fix the
bathroom light (which is done now) and
then went back out to work. They were
again moving large rocks (boulders) by
hand. He has two workers out there with
him all day. It is so neat to see how
absolutely exhausted Craig is when he
gets home, yet how big the smile is on
his face. He said today &
Valerie and
Craig at the beach
It
was very special and
we all had a great
time. We were also
given free passes to
Sea World, Animal
Kingdom (Brooke was
able to see her
favorite animal
close up - an
okapi), and Disney
(we only used 3 of
the 6 days worth of
passes we
were given, as we
enjoyed the village
where we were
staying so much).
The website for the
village is
http://www.gktw.org/
. There is a
wonderful story
behind how this
place started. We
were amazed at all
of the love shown to
us and the other
families there.
There were families
from all over the
world - some
families had adopted
special needs
children with life
threatening
illnesses. It was
amazing to see the
strength in these
families. One night
they gave each child
a bear - the bear
had a tag with the
gospel message in it
(these are the bears
that are shown in
Family Christian
Stores that go to
children all over
the world). There
were Bibles in
Engligh and Spanish
in every families
villa, there was a
chapel on the
grounds as well.
Another special
treat for us was
that a good friend
we have met and
grown close to who
is a doctor and also
has a daughter who
had a brain tumor -
her parents were
volunteers at the
village. It was
wonderful to see
them again. We felt
very spoiled and a
little uncomfortable
with all of the
attention and
goodies - but the
girls had a
wonderful time and
it was a very
special time for
Valerie Grace.
It
was very special and
we all had a great
time. We were also
given free passes to
Sea World, Animal
Kingdom (Brooke was
able to see her
favorite animal
close up - an
okapi), and Disney
(we only used 3 of
the 6 days worth of
passes we
were given, as we
enjoyed the village
where we were
staying so much).
The website for the
village is
http://www.gktw.org/
. There is a
wonderful story
behind how this
place started. We
were amazed at all
of the love shown to
us and the other
families there.
There were families
from all over the
world - some
families had adopted
special needs
children with life
threatening
illnesses. It was
amazing to see the
strength in these
families. One night
they gave each child
a bear - the bear
had a tag with the
gospel message in it
(these are the bears
that are shown in
Family Christian
Stores that go to
children all over
the world). There
were Bibles in
Engligh and Spanish
in every families
villa, there was a
chapel on the
grounds as well.
Another special
treat for us was
that a good friend
we have met and
grown close to who
is a doctor and also
has a daughter who
had a brain tumor -
her parents were
volunteers at the
village. It was
wonderful to see
them again. We felt
very spoiled and a
little uncomfortable
with all of the
attention and
goodies - but the
girls had a
wonderful time and
it was a very
special time for
Valerie Grace.
