Official pre-BMT Family Conference

Keri and I met with Dr. Cowan and a nurse from the BMT team today for our official pre-admission family conference. The meeting was tape recorded for our benefit, and concluded with us signing consent forms for the treatment, various research needs, and the radiation therapy. We had met several times with Dr. Cowan in the past, so there was little new information, but even still it was a pretty sobering meeting. It's been so nice having a semblance of a normal family life, but our two weeks is almost half over and the 23rd will come fast. Today was a reminder of how much our lives are going to change.

Here's a high-level summary of the various risks, at least as I remember the conversation today:

Survival

• Mortality from treatment-related complications (infection, organ damage, etc.): about 15%, nearly all in the first 100 days
• Mortality from graft vs. host disease: about 15%
• Mortality from relapsed leukemia: 25-30%, mostly within the first two years
• Overall survival: about 40-45%

Common complications:

• Graft failure (new bone marrow doesn't grow, requiring a fast backup plan): 4%
• Primary ovarian failure: 99%. This means that Mina Brigitta will have to receive estrogen treatments to induce puberty, stay on a normal growth pattern, and maintain bone density as an adult
• Graft vs. host disease (new immune system attacks the host): about 50%. Can be acute, i.e., comes on intensely but then goes away, or chronic, i.e., lasts for a long time. Can occur in the skin, eyes, organs, etc.
• Decreased learning capacity: about 33%
• Tooth and jaw problems: about 20%
• Cataracts: about 20%, usually within five years
• Veno-occlusive disease (liver): about 20%
• Secondary malignancies: 2-5%, increasing over time

Other possible complications

• Swelling of the brain
• Swelling around the heart
• Damage to the kidneys and bladder
• Endocrine problems, including lack of growth hormone

The hospitalization will hopefully be around six weeks, but could be much longer depending on how many of these things manifest themselves. They try to get us out as early as possible, but we won't be able to just come home and relax. We'll be giving meds at least every eight hours, will probably have a home IV going, and will have to bring her back in for transfusions probably every few days. [Note: I'm planning to set up a permanent URL for information for potential blood donors. Look for that in the next few days.] She'll be immuno-suppressed for a long time, at least six months.

There was much much more, of course. I'll post in more detail about the schedule another time as well. I can also answer any questions people might have. We read the responses every day, usually several times a day, so don't be shy about posting questions. With all of that, really the bottom line is that there's just no telling how things will go. Dr. Loh doesn't work BMT because she doesn't like the unpredictability of it; now I understand why. She'll still be Mina Brigitta's primary oncologist, but Dr. Cowan will oversee the transplant process.

As for the star of the show, she's still trucking along. She tipped the scales at 14.2 kilos today, which is a full kilo more than the last time she was weighed, i.e., she's gained two pounds in the last week. The lack of sleep is catching up to her; she's had major meltdowns the last two afternoons when she's been late going down for her nap. Tonight she was out at 9:15, which is the earliest since we've been home. The good news is, she's been sleeping in her crib again the last few nights. We all sleep better when we're not so squished in there.

She's also really cute how she's bonded to the people that have come to visit. She's been talking about "Eedie" since she left on Sunday. The other morning she and I ended up sleeping on the couch, and when she woke up and saw where we were sleeping she said "Anta!". And then "Eedie!". Today when she and I were having her blood drawn and Keri and Isaac were in the waiting room, she said, "Mama der!", pointing to the door. Then she said "Bubba der. Eedie der." I said no, Zeedie went bye-bye, and she said "Eedie house. Eedie babies," because we had told her that Zeedie had to go back to her house to see her babies.