Wednesday, October 14, 2009

Thursday, Friday and Beyond

Thursday is approaching and Sam is being prepared mentally for it. He has been discussing how we should wrap his port when we put the numbing cream on...his preference is cellophane but I think it needs more stick to guarantee effectiveness (he said it still hurt last time). He is very afraid of the needle which inserts the line to the port so I think we are going to have to work hard to convince him to let stick the cellophane down with something. A wonderful neighbor brought us some dressings that her son "D" uses...he has diabetes. Sam talked about how brave he was but was very afraid of the shots "D" has. I had to reassure him that his disease was different while developing an amazing respect got the young man down the street. This does beg the question...why? Why do so many children have to endure so much?

Sam will be admitted on Friday...this I am surprised about as I was under the impression he would get a break before the next blasting of chemo. Over the past few days I have really swotted up on the next phase and am pretty sure it part of the chemo should not be given until in remission. I have a long list of questions for the doctor tomorrow:

Induction –Day 32 Questions:

  1. When do we know the MRD (Minimal Residual Disease)?

  1. Does the 5 year timing start from the day Sam is in remission?

  1. If MRD is good – is the protocol changed to reduce side affects especially HDM?

Consolidation 1 Questions:

  1. Will Sam be admitted for the full 3 weeks?

  1. High Dose Methotrexate – is Leucovorin being administered as per the Study protocol? It is not on Sam’s roadmap.

  1. Can Sam take Kidzime?

  1. If admitted for long time, Sam will not eat. Can there be supplements in IV or other ways. He lost so much weight before.

I will keep you all posted on the answers to these and the thousand more we will have as we go though the next couple of days.

Last night we were talking about various things and I asked Sam what he wanted to be when he grew up. His reply was, "normal'!

Yet life is not 'normal' for anyone....we all have our battles, joys and experiences what shape us into remarkable (and sometimes not so remarkable) people. Being normal is going though stuff and learning how to cope with it. While I would do anything to take this experience away from Sam, I know he will grow so much from it and be an amazing young man when he's older.

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