A new week.....

Some things to report today... I have posted "The Counts" Look in the other links section on the left. Trish's white cells had jumped up yesterday, but were back down today.

Silly analogy warning: The merry-go-round continues to spin for us. I think a roller coaster would be a more interesting ride, we would feel some progress, see different scenes as we were propelled up and down. Where the merry-go-round, just spins -- going no where. Trish sits board in her room, reading, walking, watching TV and anything else she can come up with to fill her time. She's feeling pretty good at the moment.

At this point, we don't know what the doctors have in mind for Trish. Will they wait for her counts to come back and try another bone marrow biopsy? Will they try another round of chemo to increase the chances of remission in the next bone marrow? What is next, stay tuned.

We did meet with the bone marrow transplant nurse today and this is what we learned.... From the date the doctors decide Trish is in remission and give the BMT case manager a green light, it will be about 6-8 weeks (think mail in rebate timing) before the transplant. During that window - Trish and I and everyone on the face of planet earth is hoping that she will be able to come home to Florida. She'll need to return to Baltimore, probably about two weeks prior to the transplant for prep work. Including about a week of intense chemo right before the transplant. After the transplant, the first three weeks are very critical, after three weeks she will likely be released to outpatient status and need to be within 20 minutes of Hopkins at all times for about another 4 months (give or take dependent upon too many factors to list here, your mileage may vary...).

One thing that we can say for sure is that every time frame we have been given up to this point has been longer than we were told. Nobody's fault - things happen. We just plan for longer than what they tell us and are pleasantly surprised when it goes the other way. In the better vain -- all the reading we have done, has mentioned intense chemo and radiation before the BMT, but the case manager told us today that they don't use radiation for this type of transplant, just the chemo. I think that is a good thing. The full body radiation had a lot of side effects in the reading I did.

On our walk yesterday, we stopped by 5A and spoke with Cat - Trish's Scottish nurse from last time -- she said she had a friend who had recently gone through the BMT and was doing great -- fully recovered. She also had a patient on the floor she would have introduced Trish to who just recently had a BMT and is doing well (but couldn't unless they were both in the hallway at the same time -- HIPPA and all). Anyway, we have been hearing a lot of positive stories lately instead of all the bad ones, so I will take that as a good sign. Heck the case manager said that a lot of the folks with AML like Trish say the BMT was easier than the chemo and given what Trish went through chemo wise the first time I can believe that. Of course, that's assuming that the graft versus host disease is mild and just annoying enough to kill the leukemia.

On the donor front, Once a date is set the donor will go in and be briefed again on the process and have another chanced to bail out -- we're hoping he stays in the game. Poor guy, he will not be donating via Pheresis as originally thought, but he will actually have the marrow extracted in surgery. The case manager explained that "for this type of transplant" we use the marrow, not stem cells and in fact she says everyone is going back to using the real marrow for this type of transplant. The good news is that Trish has 5 fully matched donors so we have some alternates in the case that the winner is not willing or able to accept their winning status of saving my wife's life.

Well life goes on,
albeit,
very
very
slowly.