Valerie Grace
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I will come and proclaim your mighty acts, O Sovereign LORD; I will proclaim your righteousness, yours alone.
Psalm 71:16

 !  Our Journey - A list of the emails we sent out to family and friends


Prior to Surgery

1-28-05

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.

Craig and Celeste Welch

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1-31-05

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.

Love,
Celeste
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2-1-05

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.

Love,
Celeste

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2-2-05

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.

Love,
Celeste
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2-3-05

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!

Love,
Celeste
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2-5-05

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.
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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.

Love,
Celeste

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2-6-05

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.

Again, thank you so much.

Craig Welch

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2-7-05

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.

My God is Good!

Craig

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2-8-05

Hello

Just wanted to send out an update.

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.

Craig Welch

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2-9-05

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!

Love,
Celeste
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2-10-05

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.

Craig

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2-11-05

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).

Thank you!
Celeste

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2-11-05

Hello,

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.

Amen

Craig Welch
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2-13-05

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.

Love,
Celeste


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2-16-05

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!


Love,
Celeste

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2-19-05

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!!!

Love,
Celeste


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3-02-05

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."


Love,
Celeste
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3-12-05

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

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3-19-05

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.

Enjoying "today",

Celeste

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3-25-05

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).

Love,
Celeste
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3-27-05

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.

1 Corinthians 2:5


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4-5-05

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

Love,
Celeste
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4-6-05

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!

Love,
Celeste


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4-13-05

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
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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

Love,
Celeste

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5-4-05

Hello all!

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.

Love,
Celeste
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5-8-05

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

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May 19th 2005

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!

Love,
Celeste

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May 23, 2005

Hello all!

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.

Love you all!

Celeste Welch

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May 27th 2005

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.

Love,
Celeste

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Email forwarded from a friend May 27th 2005

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.

We are with you in spirit!
Beka Anast

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May 27th, 2005

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.

Craig


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May 29th, 2005

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.


Love,
Celeste

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May 31st, 2005

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!

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June 2nd, 2005

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.

Love,
Celeste

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June 18th 2005

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!)

Celeste

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June 20th, 2005

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.

Love,
Celeste
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July 4th, 2005

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

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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

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Hello all,

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.

Craig Welch

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Brooke helping Craig build a new poison dart frog tank. May 2005

Valerie enjoying the new frog tank. July 2005

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7-20-05

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

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7-24-05

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.

Craig

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August 4th, 2005

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!

Love to all!

Celeste

 

 

Valerie sweeping August 8th

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August 24th 2005

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