Manda's Sick - The Future

Yesterday we had THE BIG MEETING with the staff of VCU Health System North 10: the bone-marrow transplant team. They were late, and by late I mean more than an hour late, but the information they gave us was invaluable. I'll try my best to recite it here, in some vague semblance of logical order.

Yesterday they drew her blood to begin allelic matching. This is a matching process that uses 10 markers instead of the usual 6. As there are approximately 7 million people on the bone-marrow registry, and she's caucasian, there's an 82 - 85% chance of finding a matching donor. That donor must be contacted to ensure that he/she is still interested and available. One complication here is that a significant portion of the registry is currently serving in either Afghanistan or Iraq.

We discussed having a bone-marrow drive, but there's really no point, at least not explicitly for Amanda. Anybody who gets tested now wouldn't be on the list for about 2 - 3 months, and we're expecting that she'll be preliminarily matched within 10 - 14 days (that's just with the results of her blood-test and a basic screening of a computer database). She should have a definite match by 6 - 8 weeks--but maybe as many as 11 weeks.

We still encourage as many people as are willing to sign up. There is a cost, but the payoff is potentially enormous.

In the meantime, Amanda will continue to receive chemo-therapy treatments. The transplant team wants to minimize the number of successive treatments since she's in remission, but her particular flavor of leukemia (monosomy 7) is both aggressive and intelligent. Too little chemo and it returns, taking her off the transplant list. Too much chemo would actually enable the leukemia to learn about the medicine and take steps to defend itself (WTF???!!!). The particular method will be FLAG, most likely, as it's a medium-dose Ara-C, and hers has proven tougher than what a low-dose Ara-C can handle. They don't want to go high-dose as that would destroy her GI track, and they need her to be eating healthily.

Then, right before the transplant, she'll go in for 6 doses of full-body radiation, followed by 2 days of chemo. Then she'll receive the transplant (interestingly, she'll probably be participating in a clinical trial to determine which is more effective for her particular flavor of AML: stem-cell or actual marrow), and begin a 4 - 6 week process of intensive monitoring and anti-rejection medication.

When she comes home, she'll be taking literally dozens of pills daily, enough that prior patients have joked about just pouring some milk over them and eating it like cereal.

From what I recall, the first 100 days after the transplant will be the most important time. She has been explicitly instructed to be a weepy whiny complaining hypochondriac. Important subtle clues into potential issues like Host-vs-Graft disease can include loss of appetite, so I'm supposed to snitch on her if she doesn't eat well.

All of this continues for 6 - 9 months, minimum, and will also involve an utter lack of house chores. She is not to cook, vacuum, dust, otherwise clean, do yard-work, go to the grocery store or drugstore (she can use the drive-up window). But the bad news is that she can't really play with the kitties. All the furniture will have to be covered, so that the cats can lay where they want, and then uncovered for us to use, and then re-covered when we're done. If she pets either cat, she'll have to immediately wash her hands, and if she wants to lay with one of them, there will have to have a sheet between them.

Amanda will require a care-giver for at least a year, if not slightly longer, and if she has any neutropenic fevers or other issues, she is to call the clinic (open 24/7!) and get to the hospital within 15 - 30 minutes. Everybody who comes into common contact with her will have to have a flu SHOT this year (no nasal sprays), and she cannot be around anybody with an infection.

But looking beyond that, things get much better. She should slowly be able to re-integrate herself with society. One curious thing she'll have to do is get re-immunized for all her baby shots. She'll then be able to start going to the movies, eating out, and all that normal stuff other folks do.

Then the only things we really need to worry about are long-term secondary sickness markers.

We asked about survival odds, and the doctor told us that they should have a mortality rate of 20 - 25%, but that North 10 generally has a 12% mortality rate.

If you're curious about what the transplant is actually expected to do, the doctor described it thus: "Do you have a best friend? Do you and your best friend generally see eye-to-eye on most things? If you swapped houses with your best friend, would she redecorate? Because that's what we want." They're taking a portion of someone else's immune system, using it to replace her own, and then asking that immune system to leave things pretty well as they are, but to take care of things that just don't fit, like leukemia. They are encouraging this new immune system to take issue with the leukemia and get rid of it, but not expand the operation into any serious renovations. Thus they're looking for a matching donor of roughly the same age, with roughly the same historical exposure to disease.

So there it is, in a nutshell. I'm not really worried for Amanda--she's rough-tough. I'm worried about whether or not I can perform to the level required. I'm worried for Alastair, and how we'll deal with child-care (we can't do daycare, as that would bring too many potential germs into the house).