Hello fellow Molers,
Get comfortable... this is a long one...
I've waited a while to post on what was happening with Tommy. For those of
you who have joined the forum since I last posted... Welcome! I will give
you a (very) brief summary of what's happened so far.
My nephew Tommy was diagnosed Sept. 27, 1999 with Acute Myeloid Leukemia
(AML). It was centered in his nervous system and brain and the prognosis was
very scary. He went through 21 days of intensive chemo... and spent the
better part of the next 6 weeks trying to recover from that. He had numerous
infections and at the end of the first round of treatment, the tests showed
he was not in remission. We were even more frightened. At that time they
also spelled out that they thought he might have a second condition...
myelodysplasia. This looked to be a really serious double whammy. Well...
he went home to his wife and twin boys (he's 24, she's 23 and the twins at
the time were about 18 months old) and began to heal.
My nephew has an incredible attitude. He and his wife have a very strong
religious belief and belong to a wonderfully supportive church. When
everyone kept throwing survival percentages at him he had a simple response.
He said "It seems to me in God's eyes you are either 100% alive or 100% not.
I am 100% alive and feel as though God still has much for me to do. So I
will fight this thing, with his help, and eventually beat it so I can finish
the work he put me here to do." Wow. It still chokes me up to think about
his conviction and courage.
Within a few weeks he went back to the hospital for another bone marrow
biopsy. Much to everyone's surprise, the test results not only showed he'd
gone into remission, but that they had misdiagnosed the myelodysplasia rx.
He was now clearly only dealing with just the one diagnosis. This was no
small thing, but certainly better than having both conditions to contend
with. Shortly after that, we were notified with the promising news that a
bone marrow transplant donor had been located.
He went through a round of consolidation chemo in January and after fighting
off more infections again gained back his strength. He has maintained his
positive attitude, regardless of the ups and downs of the roller coaster he's
been on. Don't get me wrong. He's been scared, depressed, worried and upset
about all the people he thinks he's letting down while he's been struggling
with the effects of this disease. And he was having to deal with the reality
of feeling so sick for so long. Tommy, prior to this illness was a very
healthy, strong young man. But he has maintained a core of strength, which
is based in his faith, that has sustained not only him, but all of us around
him. He just doesn't realize it. All he's been doing from his point of view
is coping with whatever keeps coming up.
So now to the latest! We found out late last week that they have verified
the donor is 100% match and they have scheduled the bone marrow transplant
for March 9. Now the going will really get tough. They will bring him to
the brink of death with the full body radiation and the chemo, in order to
kill all of his current bone marrow to make way for the donor's clean bone
marrow. There were some questions as to whether or not his heart had been
too damaged by the treatment so far to accept the full-blown treatment, but
we got word today that they believe he can take the complete course of
treatment. Anything less would have put him at greater risk for rejection.
As Lillian knows... :-)) I am not a particularly religious person. I don't
attend a church or anything like that. But I do have a sense that there is a
balance to life and have a faith of sorts that understands and empathizes
with a lot of the folks on this forum who are lucky enough to be able to make
the leap of faith that I have not been able to make. Thanks to many of you I
have begun to pray (in my own way) and as I've read about what is happening
with my fellow Molers, have included you in my thoughts and prayers.
So now, Tommy is entering an intensive phase of treatment. From March 5-30,
he will be pretty much in isolation because of how severely his immune system
will be compromised due the transplant. After that we will have 2-4 months
of follow-up treatment where he will have to live near the hospital
(Stanford). This is all filled with much risk. But so many of you have
faced this same risk and have shared your story and inspired others to find
the strength to hang in there and keep hanging on until you've conquered the
demon. ... Or at least this round with the demon.
I guess the reason I'm writing this is to thank you all for sharing your
lives with me (and my nephew and his family) and to let you all know what a
strong bond and responsibility I feel towards helping others who will also
ride this roller coaster.
Thank you from the bottom of my heart, my friends.
Warmly, Kathy Q ( from CA)
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