Friday, March 25, 2011

We got some wonderful news yesterday.  The chromosome test that they sent to Cincinnati to check and see if it was part of his genetic makeup that made his body not tolerate the chemo came back negative.  Yay!  Im so grateful that this is not the case.  If it was they wouldnt even attempt to give him a couple of the drugs he needs.  Im just crossing my fingers now and praying that his body was just so sick from the Leukemia and thats what made him so sick in the induction phase.  I pray it wasnt a certain type of chemo because starting Tuesday he will be receiving those drugs.  Its been great having this break these last couple of weeks.  I have been trying so hard to not think about whats coming up.  Im just so scared.  I mean its always a nerve racking thing watching your child being pumped full of such harsh stuff but it literally makes me sick thinking about him starting this new phase of chemo. 
It will also be strange seeing his hair fall out again.  I have gotten used to him having hair again.  I remember the first time his hair fell out.  He was so sick and miserable that he slept most of the time.  I sat there in the middle of the night crying while I was pulling his hair out.  It came out so easy.  It was such a strange surreal feeling and it was also like a slap in the face.  I knew he was sick, I knew he had cancer, but seeing his hair fall out made it that much more real for me.  On the plus side, I LOVE his bald head.  I love rocking him to sleep and rubbing that soft little head.  I think I may actually miss it when it grows back in for good.  He has never said anything about losing his hair, it just wasnt a big deal for him.  But the other day when I was explaining to him that his hair will fall out again he got really sad and said he didnt want anybody seeing him like that.  It kind of broke my heart.  I think its more of a big deal now because he is home and things seem more "normal" to him.
Another good thing that happened this week is that I was able to order Skyler a real bed.  Since he has been home he has had to sleep on a hospital bed that is specifically made for pressure sores.  But since his pressure sore is closed now I went online and got him a real bed yesterday.  They will come switch beds on Tuesday.  Im so excited because it makes things that much more normal for us.  Plus, that wound bed is so loud...ugh!

Recently a couple of my friends and fellow cancer moms went out to Washington D.C. with CureSearch to advocate for childhood cancer.  They are amazing for doing this.  Here is one of the quotes from one of the speakers: 
"We are curing our children with drugs from the 50's, 60's, and 70's. We have only improved our cure rates by giving more, not by discovering more. We push them to the brink. Most of them will experience toxicity at some point. This is unacceptable in the adult cancer world, why is it acceptable for children? Curing is not enough. They deserve a lifetime of health. They need new drugs that aren't as toxic. We have the tools for this, but we need the funding."
"How will history look back on this congress? By cutting back, our children will suffer."

If you want to read her whole post you can go to


Jason said...

So true. There's so much innovation that needs to come in the world of medicine. Things have progressed, but they can still get better! Props to those who dedicate their lives to this kind of research! They are heroes!

Briana said...

that is so great that the test came back negative! we are praying hard for skyler in this next round. i can only imagine how you feel anticipating it - we were beyond scared to start DI - and you have so much more to worry about. lots and lots of prayers going your way! keep us posted.

Amanda said...

HOORAY for the test being negative! Skyler is a trooper and I know he will do great with this new round. We will be praying for him.

It's amazing the things we are grateful for, like a REAL bed. I teared up when I read that. I'm so happy for you guys. It's one more step into "normal".

Chelsea said...

YAY for great test results!!! I can't stop thinking about you as I know that the new phase has already begun for Skyler. I just want you to know we are thinking about you guys and love ya lots! XOXOXO