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Transplant Day +41: More sink holes in the road

Sorry we have been out of touch for so long, but the computer housing this journal went down and Gary has not been around to fix it. Here's what's been happening since we last wrote:

Gary developed a rash on his face which turned out to be shingles (common outbreak in compromised people). The shingles got REALLY painful and Gary was admitted to Hopkins in the wee hours of the morning on Friday October, 10. After four+ days in hospital, Gary's pain was still in an uncontrollable state -- either he was completely knocked out or he was awake, delusional and in agony. By this point the doctors became suspicious that it was not the shingles causing this much pain, and did a bone marrow biopsy on October 15th. We received the news later that night that the leukemia was back.

Here's the new plan: The docs put Gary back on a high dose of Gleevec, the wonder drug which no one seems to really know how it works. The idea is that the Gleevec will suppress the leukemia and at the same time mark all of Gary's cells in such a way as to make them more obvious to the transplanted cells in Gary's body. Kind of a "come and get us" blinking neon sign. Hopefully this will jump start Gary's Dad's cells to begin the attack on the leukemia. However, the same mechanism makes all of Gary's cells blinking targets and can lead to severe Graft vs. Host Disease, whereby the donor cells not only attck the leukemia, but will also wage warfare on Gary's skin and organs. It will be a delicate dance to illicit some Graft vs. Host (i.e. kill the leukemia) but not too much (i.e. attack organs). This balance is something the doctor's have not yet perfected. We hope to be their posterchild for success. Why not us?

If the Gleevec is not effective in holding the leukemia at bay, Dr. Jones mentioned another drug that's "looking good in the laboratory", with the third option to be a leukocyte infusion from Gary's dad. More on those options later, if we need to use them.

The Gleevec seems to be suppressing Gary's bone marrow at the moment, as his severe pain has gone down dramatically and he was able to come home today on oral pain medications. It was a very long and stressful week and a half. But we're home now and the kids have been returned to their own beds after running the grandparent gamut since Wednesday afternoon. Patrick and Libby are real troopers. I am too.

Speaking of me for a moment.... Just to make things interesting: I was minding my own business and hanging out in Gary's hospital room last Sunday, when I suddenly noticed that I couldn't see propery out of my left eye. I looked in the mirror to see if there was something in it and I noticed that my left pupil was completely dialated. Hmmm. I went to IPOP (the outpatient clinic Gary goes to everyday) to see if a nurse could shed some light on this ailment. She had the attending physician look at it and he suggested that I take a walk downstairs to the Wilmer Eye Institute emergency room to get checked out. Hmmm. So I take my dialated pupil downstairs, where I am immediately questioned and poked and innundated with eye drops. Then they tell me that I will need a CAT scan and an MRI to rule out the serious explanations for this condition, including (and I am NOT KIDDING): bleeding in the brain, an anuerysium, or a brain tumor. Hmmm. They called in the MRI tech from her home in Bel Air to run the scans on my brain. When I was in the MRI tube about 30 minutes into the ordeal, I considered FREAKING OUT, but I just could not believe God would be that mean. And I was correct, God was not that mean and as the Governor-elect of California would say, "it's not a TOO-mah". The conclusion from the eye docs is that I either got some weird drug into my eyeball from somewhere in the hospital or I had a strange ocular migraine. The next day my eye was fine. There's a life lesson here, I just don't have the brain power to decipher it right now.

So that's the update for now -- certainly not the best of news, but our journey is far from over. Gary continues to plow ahead in his battle. I've never known a stronger person.

Love to all and I'm glad the journal is back up -- Gary still has the computer mo-jo. Or maybe it's the Gleevec...


Posted by: Marcy on Oct 19, 03 | 9:19 pm | Profile


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