Thursday, January 23, 2014

All By Myself



 "Just want to be all by myself." That has been our silent warrior's request since Sunday.  Caleb first suffered an incredibly sore back for five days after his last procedure.  We got him out & moving too soon and that seemed to make matters worse. 
 
Before the pain hit, Caleb got an incredible reunion with one of his best buddies from Pre-K.  He was so happy.
Cal has lived in warm bubble/Epsom Salt baths for hours each day for relief. Then on Sunday, that horrible "chemo mouth" made a vicious comeback.  It's fairly common with children taking high doses of chemo.  His gums, lips, & entire mouth are so sore, he can barely eat.  We've tried packing smoothies with protein for nutrition & are just encouraging lots of liquids.  The pain has been so severe, he hasn't even been talking.  His loving, understanding, & patient home-school teacher agreed to his request of "sign language" this week.  
 
Mrs. McDonald offers warm cuddles during reading time.
Outside of "school", Cal has only wanted to lie down in a dark, quiet room alone with his iPad.  He hasn't accepted loving hugs, like he usually adores, or comforting pats on the back.  He hasn't felt like playing his favorite board games, and television has even been too annoying for him.  He has just wanted to face it alone.  It's been incredibly difficult to accept that.  He has lost a lot of weight, and his clothes are getting super baggy.

That being said, I got to enjoy a vacation day at home with him today, & he jumped in bed for cuddle time this morn- that was a welcomed surprise!  We have tried different medications all week to help & finally found the right one!  He ate dinner last night (whahoooo!) and was able to eat solid foods again today.  It's definitely getting better, but we still have a long way to go.  Hopefully we're at a point now to help him get through it all hand-in-hand.  It's much easier on all of us, when we can fight this awful thing called cancer together, versus alone.

7 comments:

  1. Prayers........so glad I saw you. Next time hopefully I can give you a hugh hug. Praying today and this weekend is easier on you guys. XXXOOO The Greens!

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  2. Oh Sweet Melissa! I am so touched reading this. I know there are many ups and downs for this challenge, but I sure pray the ups will start to greatly increase for you and your precious Caleb. Last night's dinner and finding a medication that works deserve celebrations! And your cuddle time ... I know that must have been priceless to you! Jake misses him in school and still prays daily for Caleb's health to improve. My family sends you our very best wishes and continued prayers for strength and hope. May God continue to bless your family. Many hugs to you! Love, The Pellegrino Family

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  3. We continue to keep Caleb in our prayers and have shared your prayer needs with our church family. Many are praying.
    Hugs,
    Mike and Susan

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  4. Daniel was so happy to see Caleb last weekend! We hope he enjoyed the brief time together and continue to pray for improved appetite, freedom from pain and overall peace! Hugs to you all!
    Debbie

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  5. Hope he feels better soon and can get some food in that sweet belly of his! Hang in there. You are in our thoughts and prayers. I wish there was something more we could do to help you through this terrible storm. Keep holding on to those "rays of sunshine" that break through and remind us of a brighter tomorrow. Love your way!
    Shawnie

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  6. So so so sorry for the unbearable grief you go through watching Caleb... but so so so thankful we have Jesus who is right there with you every step of the way!!! Still praying!!

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  7. I have such admiration for the grit that Caleb shows; I dont know that I could be that brave and I'm a grown man. I honestly don't know how I could handle what you're going through. I just pray that God wraps his loving arms around your family and hugs you tight.

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