Trials and tribulations of a patient in search of a bone marrow transplant

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Thursday, February 28, 2008

Details on Steve's donor search

For those of you interested, this is how Steve's marrow donor search proceeded. In querying the national and international marrow data bases, the search team found:

US: 6 possibles...4 of those were unavailable, 2 gave, no perfect matches

International: 3 possibles...1 of those unavailable, 1 tested but was a mismatch, 1 who will give a sample next week, so this one we still don't know about.

Cord Blood: No matches

Once a potential match is made, the donor will be given a thorough physical, take growth hormone shots for five days, then give a blood draw similar to a platelet donation to harvest the maximum number of stem cells.

So the team is waiting to see the details on this last international donor who showed up after a month of hearing nothing. This will take another two weeks. And thinking that if necessary, they will conduct the transplant using one of the US donors who was a complete mismatch on the C antigen. This will mean Steven has to take immuno suppressants for a much longer period to counter rejection since the new system (new DNA, new blood type, new allergies or lack of same) rejects the host. Before destroying Steven's own system for the transplant, they need to have a donor ready, with a back-up choice just in case.

All of this would suggest, that if you ever need a marrow transplant, it is best if you come from a very large family living for centuries in a small village that is very inbred!

Steven is getting some color back in his face and is much improved from last week's bout with influenza when he was truly miserable. Still no energy, but much cheered by the idea that he might have a bit of sanity leave at home before the actual transplant. And bummed that he needs reading glasses.

Steve's Mother


For all the Fidelity folks who wondered how I could see the little type on my screens it looks like I need reading glasses. I hope it's just the chemo not old age.

Been tolerating the new chemo so far after a day. They said if my blood counts continue to improve I may be able to leave the hospital for a few days. I've heard this before so I'm not holding my breath. When they have the donor material I will need to be checked back into the hospital for another month (heard that one before too).

Tuesday, February 26, 2008

New Plan.
They're going to give me a chemo that targets just the leukemia that is in trials which doesn't cause hairloss or all the associated reactions. They also have a "near" match which the doctor is interested in harvesting. There are more potential international matches they are still investigating.

They are starting the Dacogen tomorrow and once my cell count comes up I may be able to go home until the transplant which will be in the hospital next door. I hope they have a different color scheme.

Well it is official. I've spent a quarter of a year in a hospital with no direct release in sight. I've managed to catch all the hospital bugs as well.
MRSA - staph infection treatable only by VencoMyocin
VRE - VencoMyocin resistant Enterococcus
Influenza B.
This has kept me occupied as of late and I haven't been updating where I stand. The three US potential donors were not a match. There is still an international donor they are testing. The Dr. mentioned something about using chord blood as a transfusion method I'll have to look that one up.
The kids are doing well and Lisa is doing what she can while she is a single parent.

Thursday, February 21, 2008

Feb 20 - Steven Update

Well, Steven has felt terrible for the past few days. Fatigue, upper respiratory and sinus problems, sleeping 16+ hours a day. They actually think he's probably caught a cold/flu given that they can't find a bacterial infection. We're hoping that's all it is.

His most recent marrow biopsy shows a significant increase in blast cells over two weeks ago. This was expected at some point, but they had hoped it would take longer so they could give him a break from chemo. I haven't expressly heard a decision, but I presume they plan another course of chemo as soon as he feels better.

So far the donor search hasn't gone too well. There are still a couple of unknowns, but several potential donors have been crossed off as not an appropriate match. We, of course, hope for better luck with the still unknown potentials. If there is no true match, they apparently begin considering less than perfect matches.

You know all I do.

Hope everyone is well, David

posted by Lydia for Dr. David Rutledge

Monday, February 18, 2008

Feb 11 - Steven Update

Most recent bone marrow biopsy shows 9% cancer cells. Of course, much better than after last course of chemo, which was virtually all cancer cells, but they hoped for non-detectable. Even if there was no detectable cancer, he still needs the transplant because a recurrence is almost guaranteed without it.

His white count finally came up today to 1.5 (has been running 0.2 or so, normal is around 3 to 11). He still needs blood and platelet transfusions occasionally, so he's not out of the hospital yet.

He's feeling relatively good, as his fevers mostly stopped a couple of days ago. Of course, he's still on antibiotics.

The current debate with his doctors is whether he will be allowed to go home for a few days before the next chemo round. Most likely they will perform another bone marrow biopsy (that would be his fourth) in the next week or so and if the ratio of normal to cancer cells was improving he would get a little break. If not, start the next round immediately.

They're still working on the potential donors for the transplant, so probably would be another round of chemo before transplant actually happens, but there is a potential, I believe, for the next step to be the transplant if the donor situation works out quickly enough and they feel he can be off of chemo for a little window.

All I know, David

posted by Lydia for Dr. David Rutledge

Wednesday, February 6, 2008

First Post

Hey! We thought this blog spot might be a good place for us to report current happenings of Steve's progress and current conditions. We have several family members that migt be updating this blog with information. We hope to get Steve writing here too!! (Steve, that's a remark for you - everyone wants to hear from you!!!)

Anyway, I hope you like the website. Some have told me it looks too professional - but that's kind of my job!!

We have left comments open in hopes of hearing from you all as well. Thanks for taking the time to be here. It means a lot to us all - especially Steve!