Saturday, May 29, 2010

Saturday, May 29

Today was a quiet day. The first round of chemo is over, the mucositis is gone, and Collin's counts are coming back up quickly with the help of Neupogen. Collin had another high dose injection of Neupogen this evening, and his oncologist feels positive that his white blood cell count will be high enough to do the stem cell collection tomorrow morning. With his counts rising, talk of discharge to home before the next, less intense, round of chemo has come up; however Collin's oncologist is considering repeating this first round of chemo right away since he has responded so well. Apparently the Head Start III chemo protocol which was the original plan for Collin's treatment has had more children come through treatment with fewer long term side effects such as hearing loss, etc., but overall has a slightly lower survival rate than the Head Start II protocol which used more cycles of high dose chemotherapy with a slightly higher rate of long term side effects. Since Collin is too young to undergo radiation without suffering catastrophic losses in development and overall quality of life, his oncologist wants to give him the best possible chance at survival. I figure at least he can LIVE with some hearing loss; we can deal with that, and whatever other side effects we may have to contend with. The important thing is that he'll be alive. So if his oncologist feels the best thing is to repeat this first round of chemo instead of doing one of the less-intense rounds, then I'm OK with it. Seeing him continue to improve will get me through anything.

Today was the first day Collin wore the patch over his left eye. Overall it went well; he didn't seem to bother with it too much. I did my best to keep him occupied so he didn't fall asleep during the two hours, which would defeat the purpose. I hope he continues to tolerate it as well as he did today. I also got him to laugh and smile a few times today; I think the small change in his face when he smiles is becoming more noticeable.

6 comments:

  1. Jenn, let's start baby signs so that he can communicate with you while he is non-verbal! I will do whatever you need!

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  2. I had taught him a few signs at home, but maybe there are some medical, hospital, etc. signs we could learn that could be really helpful...? I think it may be a while until he's verbal....

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  3. If you have access to a computer with SKYPE, I can show you signs since I have Skype installed. Just tell me what you need me to do! Signs for 'hungry', 'thirsty', 'mommy', 'daddy', 'hurt/pain', 'sleepy' are good ones. We can create name signs for Neya and for Collin so that he can ask for you, Bill or Neya. If he has a favorite toy, a sign can be created for that as well!

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  4. More signs: 'more', 'finished/done/enough', 'eat', 'sleepy'.

    I know you know that when you incorporate the signs as you speak, Collin will pick them up naturally, just as he will speech!

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  5. I don't have access to Skype in here. Could I look them up online?

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  6. http://www.aslpro.com/cgi-bin/aslpro/aslpro.cgi

    This is a good site. You'll notice that the presenters have no expression. I don't know why they are doing that! Please use expression and words with Collin. For instance:

    'Do you want more?' .... you speak the entire sentence while signing 'more'.

    'Are you done?' ... speak the sentence while signing 'finished'. You can use two hands or one. Doesn't matter!

    'Do you want milk?' ... speak the sentence while signing 'milk'. Again, one hand is fine!

    'Are you hungry?' ... say the words while signing 'eat. 'eat' and 'food' are the same signs!

    Give Neya a name sign: I suggest the handshape for 'N' somewhere near her mouth as you create a smile. Collin's name sign would be a C at his temple.

    I hope this helps ... and if here is anything I can do, PLEASE let me know!

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