 David Erin Gendron
1976 - 1999
"If heaven has auto repair,
David is running the shop."
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David and his mother, Karen, were members
of the Totally Hip Support Group.
This web site is dedicated to his memory.
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David's blood counts began to drift down in the summer of 1998 and it became
obvious that the antithymocyte globlin therapy was failing. A bone marrow
transplant would be his only remaining option.
In September, after finding a 10 for 10 donor match, Fred Hutchinson
staff was elated. David's transplant would go well, they predicted.
After all, he was still in myelodysplasia, acute myelocytic leukemia had not
appeared, even though there were a very few blasts seen in his blood.
They were right. David sailed through the chemotherapy, continuing
to eat in spite of the mucositis. Out of the hospital in a near-record 18
days, he was the best of the best.
At home he continued to do well, developing just enough graft-versus-host
disease to let the docs know that the marrow was grafting, but not enough to make
him miserable.
For two weeks we all sailed on clouds of euphoria. After years of
prednisone therapy that destroyed a hip with avascular necrosis, leading to a total
hip replacement in 1997 (age 20), the ATG therapy in 1994 that seemed to
work, but did not, it looked like a cure was at hand.
Then, on day 28 post-transplant, the sky fell down. David was
called emergently back to the hospital. Somehow, he had relapsed into the
acute myelocytic leukemia that he had not had going into transplant. How could this
be? The docs don't know, but without immediate chemotherapy, he could
be dead within 14 days.
Again, he surprised the docs, surviving this next bout of chemo with
few side effects. His sheer determination seemed to prevent them.
Because this second chemo could harm the fragile new marrow, they said
that once he was in remission for 12 months, a repeat transplant could be
done, and that this time they would also do the total body irradiation that David's
protocol had not called for the first time. They also went back to the donor and
obtained a lymphocyte donation, the theory being that those lymphocytes would see
the cancer cells, as well as David's old marrow that was coming back, as the
enemy and kill them. But, they also told him that that therapy rarely
worked, but it was worth a shot.
For 33 days his blood was 'clean'. He hadn't any working marrow left
either through, so was surviving on transfusions of platelets and red blood cells and
multiple antibiotics. Then again, a panic phone call. Blasts again filled the
microscope field.
Another round of chemo (in the first week of February). This time he was
only given about a 10% chance of surviving all seven days. Again, he did.
As before, once he was free from the hospital, he went back to
working on fixing up his truck. "It's called living," he told them,
when they were horrified that he wasn't spending all his time sitting in the house
staring in at his disease.
Friends started to go to Seattle to visit, he saw all his best friends at
least once. The transfusions and antibiotics continues, and David continued to live
fairly comfortably. he and his father, who had seen little of each other since
David was three, got to know and love each other. Many hours they spent
discussing things automotive, watching blood and guts movies and just plain talking.
March 1, Vic and Claudia, David's other mother, begin to sense
a change in him. He is spending more time in his room, and work on the truck has
slowed to a near halt. he is talking less to me too, just keeps telling me how
tired he is, how tired he is of fighting. He has Vanco-resistant enterococcus
and C. diff and is starting to have a lot of abdominal pain. He is also
coughing a lot at night, and running a fever. But, his blood cultures
keep coming back negative, they can't figure it out.
His mouth breaks out in herpes zoster, now it is getting painful to eat.
For the first time, he has them start supplemental hyperalimentation.
He can't eat and drink enough to keep up.
A second transplant is now his only chance, but only a 1% chance at that.
"I'll take it, mom," he tells
But, he continues to withdraw.
Monday, March 15, Claudia finds him on the floor in his room,
nonresponsive, "thrashing and screaming and bleeding from his
mouth." (In retrospect, it was a grand mal seizure, brought on by
hypoxia from aspiration.) I rush to Seattle.
In the hospital his heart rate is in the 130's, respiratory rate 30 to 60
and his entire body is rigid. The only response to touch is a further tensing and
the extending and rotating out of his arms.
CT, MRI, lumbar puncture, all negative. Chest x-ray only shows
infiltrates in the bases.
By Tuesday his body is relaxed, but his neuro status has worsened,
now he is totally nonresponsive to stimuli. A morning chest x-ray shows a collapsed
right upper lobe, and discrete nodules, probably aspergillus, we're
told. His kidneys have shut down, probably from rhabdomyolysis from the
seizures.
When he first went into the hospital, David signed no intubation and no
code papers. This made the staff crazy, but he did not want to be kept alive
unless his recovery could be complete.
It was decision time. The outlook was bleak, the neurologist had
confirmed my first gut feeling, that the sudden neuro collapse was due to hypoxia.
We stopped all treatment but comfort measures. I told David good night on
Tuesday, March 16, and told him we would see him in the morning. I then
told his nurse I didn't think anything would happen overnight.
Typical David, he proved me wrong. About 1 a.m., Wednesday,
March 17, he slipped away.
Now his father, step-parents, and I are trying to understand why he had to
suffer so for 10 long years. He as a good kid, honest and straight, and
would give anybody the shirt off his back if they needed it. All he wanted to do was
become a really good auto mechanic.
I miss him. We had a party to celebrate his life, he would have
hated a funeral. Friends came, and wrote out their favorite David memories.
On Sunday morning, March 28, in the midst of a blinding snowstorm,
his father and I scattered his ashes into the river where he had loved to swim.
Cremated with him was the purple suit, the one he had custom made to wear to
a friend's wedding on September 9, his last party before going to Seattle on
September 15, where he started the process at the Hutch on September 17. His
transplant was October 17, and he died on March 17. Funny, huh?
The picture was taken the day of Rob and Sara's wedding, with David
standing by the truck he had finally found and bought after years of searching.
The world looks different to me now. I know David would not want any of us
to be sad, but it's hard not to be.
One day at a time...
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I am secure in the knowledge that David is in a better place because he told me.
On the last two days in the hospital (the only two except for the transplant time
and one week of inpatient chemo) I asked David if he would let me know if where he went
was good, even though he was unconscious and showed no type of response to any kind of
stimuli. (I knew better than to tell him to let me know if he was okay, he'd always
rebelled against that..."I'll be fine, mom!" [You know how THAT goes.])
We came home the day after he died, all arrangements had been made and I needed
to be in my home. The following morning I awoke early, for the first time in weeks
not in tears, but instead with a feeling of overpowering joy, not happiness, but joy.
Because it was so early, I decided to go out in the hot tub. There is a big
apple tree next to the deck where I have several bird feeders. The birds where busy
stuffing themselves, and I just sat in the water, watching them and enjoying this new
feeling of peace and joy. A flock of birds flew over me and I looked up to watch
them.
Now, it was a clear, sunny, morning, around 5:30, with blue skies. When I
looked up, the sky seemed to be covered with a layer of water, it sort of shimmered.
Then, it seemed that David's face was looking down at me, filling the sky and
smiling with this look of pure happiness. Stunned, I looked away, doubting my
sanity. Then, I looked up again, and this shimmery, translucent, vision was still
there. Twice more it was there, then gone. Again my tears flowed, but this
time tears of joy. He told me, no, he SHOWED me, that where he is is good.
I still cry, but less often, and not with the same feelings of despair, but more
just with missing him, and that will probably never pass, and that's okay.
Karen Buck..... David's mom
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