Update 12/21/04
Quick update to kinda' sorta' explain things: I'm still in rooom G1281, may bd here another week or so.
Here's the problem. Mylotarg is not a standard course of treatment that does not involve splenatic injury. Heparin has been studied to determine the effficacy in V.O.D. (See Christy's notes for an excellent study on V.O.D.)It has been argued successfully that Heparin is NOT indicated in V.O.D. Having said this, I was placed on heparin to see if it were successful-it was. I was taken off heparin and worsensened. The procedure was repeated with similar results; I went on heparin and got better, went off and got worse.
The bad part of the experiment is that it has < 10% chance of success, and now the problem, I've outlived anyone else who has undergone this type of treatment. So here I sit, the subject of some of the most brilliant minds in the world dealing with luekemia, I've outlived all other subjects, and am the subject of several brain-storming sessions with no ideas where to go or what to do.
We've decideded to stay here over the holidays, simply because it is safer to be on this floor than just "out and about" trying to regulate the heparin drip based upon results of a vanacomycin trough.
Here we sit, I'm doing as we as can be expected. It is now official that Dan is the last person on earth a complete match for my bone marrow transport. The other possible matches don't, so they're out.
Cards are on their way, this whole thing is still scary, but I'm so grateful for each second, and every morning I awaken to to the flags flapping in the breeze, I remember just how lucky we are that there are people out there pulling for us.
Chris and Terri.
posted by Dad @ 1:01 PM
3 comments
3 Comments:
Chris,
Jeez, talk about your good news - bad news scenarios. Good news you've passed every test they've thrown at you and out lived every similar case. Bad news what do they do now. I would give anything to know what to tell you. Other than the fact that if someone said "Hey you, lift these hundred pound rocks from down this hundred foot hole up to this hundred foot shelf, and keep doing it, and your brother will be alright" I would do it, and I am sure that your other siblings and offspring and most of the people who have known you and worked with you would do the same. Because you are one of those people who are just worth it. But organic chemistry, unfortunately, isn't that simple.
I hope for the best from the best minds you referred to. They had good results from one unconventional test, maybe they will expand their thinking and come up with some other wacked-out theory that would only work on a Morgan who has been medically proven to be one of a kind, even with seven siblings.
Happy Holidays to you and yours,
Tom Morgan
We always knew you were special, but this is carrying it to an extreme! Keep you positive attitude...it's is of equal importance to the best and most progressive meds/treatments in this world. In the meantime those who love you continue to pray for you and Terri and for that matter, all of us.
Love, hugs and more prayers,
jk
I've never in my life been more grateful for "Morgan luck"...it crossed my mind to fly out there, my screwy sister is up to her old antics and it seemed better than putting up w/ her here, but thought better of it.
Stay lucky...Connie
oh, and
HI!!! KATHY.. I'll write more as soon as I sit down for more than a minute. C
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