6.27.2011

One More Day Down

So far, so good.  No fever and Lucy is just rocking along.  Thankfully we had an uneventful day today.  I took pictures of her with her new physical therapist today, but just realized that that disk wasn't in the camera today.  What a brainless moment.  Her ANC was 100 today, so we are basically on lock down.  We will get out of the apartment for trips to St. Jude and that's about it.  Some people are brave and go out more but right now we are good to stay put.  Visitors are being kept to a minimum, too.  Her doctor told me today to think of her as a newborn before her vaccinations.  No crowds, lots of sanitizer and no one in her face. 
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On a completely random note, did you ever wonder what a person with Celiac disease eats for lunch?  I'm sure its been the most pressing thing on your mind, so here you are....

Caramel rice cake with white chocolate peanut butter and tortilla chips with hummus.  The hummus was already gone when I took this picture :)  Pretty boring, but surprisingly good!
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I've had several people ask me lately about Lucy and Ella's understanding of her cancer.  It's pretty simple, because that's the way we want it to be.  When Lucy was diagnosed, the Child Life Specialists at LeBonheur were wonderful to explain to both of them, in terms that they could understand, what was going on.  She said that Lucy had "sick spots" called cancer and that she needed surgery and lots of medicine to make her better. 

We generally take each day/phase of treatment as they come.  For example, we never talked about Chemo until it was actually time to deal with it.  We still have not told her that she has 4 cycles to complete, will spend lots of time in the hospital and will feel like crap alot.  I just don't think it is necessary to fill her little mind with too much information.  The same for Ella.  I am willing to tell her a little more, but I am still fighting like mad to protect her as much as Lucy. 

 I know that they both understand more and comprehend more than I give them credit for, though.  Lucy has surprised me with some of the things she has said.  Most importantly, I pray daily that God will give both of them a peace and acceptance that passes all understanding.  It's a peace that I believe only God can provide.  I've said before, but Lucy has the most wonderful spirit about her.  Even today she was mad she had to wear her mask and hated every minute but through tears said "Yes, m'am.  I will wear it."  She just gets it.  It blows my mind honestly. 
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Also, to answer another question I've had alot, we are NOT using umbilical stem cells for Lucy.  We are using her own stem cells, which have not been affected by cancer and are healthy.  It is called an Autologous transplant and is the most effective in dealing with this type of cancer.  She will have another harvest in the next few weeks to collect the rest of the stem cells necessary for the last 2 cycles of chemo/transplant. 
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Ok, so that was my random post for the night (minus the pictures from PT, which were really cute!) I do have this really cool picture, though. 



Even Mike Ditka says "Go Lucy Go!"  Thanks Laura Drew!

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6 comments:

  1. Hi Kate,
    I am so glad to hear that Lucy is doing so well considering all she is going through! Continuing to pray for her and your family.

    Blessings,
    <><

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  2. so awesome...praying constantly!

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  3. Hi Kate, thanks for explaining the stem cell transplant, I also thought it was from the umbilical cells, it is awesome that they could use healthy ones from Lucy. It must be difficult for Ella having her sister sick, I'm sure that her little heart is breaking also. Jack is soooooo cute, it is fortunate that he is a very happy little guy, it makes things so much easier. I am praying for your family daily and have every finger and toe crossed for Lucy....Sandy

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  4. Alright, I know you won't get around to responding for awhile but I have to ask; What is Celiac disease?

    Mandie

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  5. Hi,
    I just recently started reading your post and had to post a comment about how you are trying to keep as much from Lucy and Ella as possible, not wanting to burden them with unnecessary worries. I think you are doing great, and using lots of wisdom. Your story touches me in a very personal way. My youngest brother was diagnosed 32 yrs ago with Lymphoma Lieukemia when he was 6 yrs old. At that time, I was 8 and my older brother was 10. It was a very difficult time for all of us, my older brother and I not understanding why my parents felt they had to stay at the hospital the whole time, leaving us with family and friends for long periods of time. But now that I am grown and have 3 children of my own, I have so much admiration and compassion and understanding for my parents and the difficult decisions they had to make during that terrible and difficult time in all our lives. Just the thought of having to go through what they did, tears me up inside. Looking back, as terrible and difficult as it was, I can see God's hand at work and knowing the many lives He touched and saved through the whole thing. I know that I am saved and born again today because of my younger brother becoming a Christian after he got sick and sharing Jesus with me. It wasn't until I was 22 yrs old that I surrendered, but the seeds were planted in my young heart and God has brought many beautiful things out of such a difficult and heartbreaking circumstance of life. Hang in there...God is at work, in the midst of all you are facing and His promise is to never leave or forsake us! I will be praying for Lucy, her siblings, you & your husband. God is faithful!

    June 28, 2011 10:06 AM

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  6. Such an awesome picture! Thoughts and prayers are still with you and your sweet family!!

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