Archives: October 2003
Wed Oct 29, 2003
Galloween on Hold this year
It was a sad time determining that Galloween will not happen this year. Way too much work and I am down a white cell or two these days. So, we will be taking the kids to a juicy neighborhood where our close friends live and see what kind of sugar stash we can get away with. I had one of my first "Son" discussion problems. The gist: "Patrick...what do you want to be for Halloween....A Butterfly....A Butterfly? Sure....What color Patrick...A Pink One." So how do I tell a 2.5 year old that Dad does not really want him to be a pink butterfly on Halloween and would prefer Leatherface from TX Chainsaw Masacre? Well you don't but I thought quick on my toes and we decided the MSN Butterfly would do. Man, when they said parenting was hard, they meant it. Libby, could care less what she will be as long as she is well fed. She is a Tank on a seek and destroy mission in the house.
Scoop on me. I have been pounding Gleevec for over a week now. My white counts have dropped significantly...in fact I am close to being fully compromised again. That sucks but it is the lesser of two evils. The Leukemia has been beaten down enough so that I am not in pain. The Drs. are also hoping the Gleevec heightens Graft Versus Host Disease so my dad's cells can seek and destroy. I am starting back up on some additional antibiotics as well.
I am getting an Ass-Tap this Friday to see what is in the Marrow. I expect to still see Leukemia cells (remember the sensitivity is around 1 million cells or more) but they should be in reduced numbers. After that, Hopkins is talking about releasing me to the outpatient services. Marcy and I are not quite sure what that means except we are not under the daily supervision of IPOP on the 5th floor. Scary. This is a step that we must take on the road to wellville. We should have some good information next week the outlines the next steps/milestones/risks. We are kinda in limbo at the moment which sucks.
Thats about all that is cooking these days. Speaking of cooking, I have had zero appetite and eating very little...compliments of the Gleevec I suspect. Not quite the diet I had in mind.
Take care. Have a safe and scary Halloween. Mark you calendars for next year's Galloween! Here is the link to the scary Galloween site with past pictures.
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Thu Oct 23, 2003
Feds indict the Galloways as part of the Rush Limbaugh investigation. . .
Well, it is I, the oxycontin addict. Apparently I have been going through detox all this week from my crazy stay in the hospital. I was on some serious stuff during my recent tour of duty. I have been suffering from sweats, vomitting, nervousness and general ain't-feeling-quite-right syndrome. I was/have been on all the same meds as Rush Limbaugh. I am not sure what kind of statement that is making but anyone wanting to send some cabbage my way for R&D, please do.
We are back into the waiting game. My shoulder still hurts. Probably from the nerve damage done by the shingles. I am hoping that lessens as time goes on but in the grand scheme of pain, I can deal. The back pain has left for now...hopefully, the Gleevec is doing its thing so Dad's marrow can do its thing. It is all wait and see. Scientific, huhhh?
If you noticed, the URL for this site has changed. I moved the site from my computer in the basement to a real server, outsourced. I also hooked one of my domains, www.dadswithcancer.org to it (pet project I am working on). This gives me more speed, data backups and general site protection. Hopefully, you will notice nothing except things being faster.
That's about it. I will update in a few. Thanks to all that checked in during my 10 day blackout. I literally lost 10 days I remember little about. How does Rush do it...hmmm Dear Mr. DittoHead...
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Sun Oct 19, 2003
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...
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Mon Oct 06, 2003
Gary Jr now 100% Gary Sr. Marcy Seen Running from House
Well, it's offical, folks. The genetics are back and Gary's new blood cells are 100% his dad's. This is the best possible news in terms of engraftment and a SIGN that the transplant is doing its thing so far. Hopkins treats this exciting news in true smug, world-class institution fashion -- "well, that's the results we expected." All this excitement must be tempered by the fact that Graft vs. Host disease can pop up at any moment and cause some trouble. Some GVHD is a good thing -- too much, not so good. In summation, progress is being made in the forward direction. As Gary says, "It's a marathon, not a sprint. And I'm not built for speed anyway."
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Fri Oct 03, 2003
Day +28 and Holding
So I guess you can wonder by the infrequency of these journal updates that either things are going fast and furious or nothing is really happening around here. Luckily I can affirm the latter, things are just poking along with us. Gary is 4 weeks out from transplant today and things are going cautiously well. His white cell count dropped after he stopped getting injections of the growth factor last week, but they seem to be leveling out and should be rising under their own steam soon. The doctors assure us they are not concerned. Gary's platelet count is almost to normal (!) and his red cells are doing OK. He may need to get a blood transfusion early next week, just to keep his energy levels up.
Because Gary's condition is stable, we were able to stay home from Hopkins on Thursday and we will be able to stay home this weekend. Activities approved for tomorrow include Pumpkin Pickin' at a local farm. Hay rides, farm animals, and pumpkins. A perfect Saturday afternoon.
The kids will be farmed out to various grandmothers on Sunday, so Gary is looking forward to a midless NFL afternoon on the couch.
Hopkins drew blood from Gary on Wednesday for genetic testing to determine what percentage of Gary's blood is now Gary Sr's. Dr. Jones (big transplant cheese) stopped by to say he's expecting almost 100% of the blood to be Sr's. That would be great, huh? However, now that Sr's blood is cranking in Gary, this is when Graft vs. Host disease can start to flare up. We scan the horizon daily for symptoms (rash, enlarged liver, need to spackle) but so far, nothing.
Enjoy this beautiful Fall weather!
love to all--
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