Re: [MOL] Ponderings and an update on Tommy... [00660] Medicine On Line

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Re: [MOL] Ponderings and an update on Tommy...

Hello fellow Molers,

This is a long one, so don't hesitate to use the delete button if I go on and 

Lillian, those words are so true as I have personally learned since my 
nephew's diagnosis on Sept. 27.  

An update... He went to Stanford Bone Marrow Transplant Center in Palo Alto, 
CA on Friday this past week and had his "treatment to date" reviewed by the 
doctors there.  Tommy and Wendy taped the meeting (which the Stanford doctors 
recommended because they share so much information it's hard to take it all 
in).  After talking to my nephew and listening to the tape there is good news 
mixed with not so good news.  It turns out in addition to Acute Myeloid 
Leukemia, he is also suffering from Myelodysplasia.  Either one is a life 
threatener and no one had spelled out until the Stanford appointment that he 
had both.  Chemo is not particularly effective in doing much but putting the 
Myelodysplasia into remission long enough to do a bone marrow transplant.  At 
least that's what the research I've done so far seems to indicate.  The first 
round of Chemo did not put either disease into remission.

The current treatment plan is he will have a bone marrow biopsy tomorrow (out 
patient) and return for his second round of Chemo on Monday, Nov. 29.  He 
lost 20 lbs. during his first 5 weeks in the hospital, but has put back on 15 
lbs. since getting home.  He feels strong enough and now knows what to expect 
with the second round.  I don't have the details yet regarding which drugs 
they'll be using.  His doctor described it as a stronger "bomb".  

Stanford has begun the process for looking for a donor and as soon as they 
find one they will begin to prepare his system to accept it.  Once they find 
a donor, it means roughly 4 months away from home from start to finish.  But 
at least we are only about 50 miles from where the treatment will occur.

But you know, those are only the facts... Here is the really important part 
that I wanted to share with everyone.  Those of you who have read my postings 
know that I'm not all that religious... respectful, but not a member of any 
church or anything.  In this meeting with the Stanford doctor, she was 
tossing around this percentage and that percentage regarding remaining 
disease free and his chances for survival.  Tommy and Wendy have a very 
strong faith, which if anything has gotten stronger since he was diagnosed 
less than two months ago.   I spent Sunday afternoon with them and their 
twins and here's what Tommy had to say after pondering the doctor's words:

"God doesn't think in terms of percentages.  You're a hundred percent alive 
or not.  I don't feel that he is done with me here and therefore, I'm going 
to do everything I can to stick around long enough to do whatever he has in 
mind for me.  If he does have it in mind to take me, so be it.  But that's 
not how it feels so I'm going to do my part to hang in here and accomplish 
whatever I was born to do."  

I cried when he said it and I'm crying again as I write it.  But the truth 
is, since he was a baby he has touched everyone he's met.  He's lived with me 
twice, once in the first grade and again when he was a senior in high school. 
 All my friends continued to ask about him as he's grown up. He really has 
made a big impression on so many people.  I think I am coming to the point of 
accepting that you cannot fully understand why someone becomes sick.  I mean, 
if it wasn't someone you know, it would still be happening to someone you 
don't know.  But what you can do look at is how everyone around them 
responds, including yourself.  And I think that's what Tommy was talking 
about.  If he can stay alive, he will have an opportunity to touch many more 
lives.  And even if he doesn't beat this thing, the many people he has 
touched may have found kindness and grace they'd never known they had without 
having him in their lives.  I too am convinced he has much more to do here on 
this earth.

I would very much like to thank the people in this forum once again.  If I 
hadn't found you guys I'm not sure how I would have managed to cope with this 
onslaught of "data" that I've had to process.  There is so much loving, 
caring and support in this forum that anyone who comes here knows they've 
found kindred souls who understand and are willing to reach out and help.  
Thank you all...

Your friend, Kathy Q.
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