Because she is feeling a little better, because her fever is a little better, because the doctor still wants to find out what "bug" we are dealing with, his recommendation is that we schedule the radiation to begin next Tuesday (a week later than scheduled now) and we would reassess. Again, if there is no improvement, we'll go with the transplant regimen. He is still seeking all information to help make an informed decision. He is also seeking a better matched donor in the event that we would end up buying enough time for that to come through. He does not think she will begin magically producing neutrophils in the next week, but he has a "small ray of hope." Her Cat Scan was a bit worse this morning (the worse news of the day) but not a lot worse. He doesn't think waiting one week will make a big difference in her already incredibly low odds of having a successful transplant, but he reminded us he could be wrong as she could still take a sharp turn for the worse any day now. He doesn't think the week will make a difference in the ultimate decision either, but it could. He says if she has even 50 neutrophils next Monday, we will wait some more. If not ... it's transplant we think. The cultures could turn up something that would send him at least temporarily in another direction, but he reiterated that he thinks we are dealing with a fungal infection in the lungs and a bacterial one in the mouth. He went over the reasons again her odds are so bad: infections, poor match...but no one is giving up yet. Kinsey, Jillian, Audrey, Ann, and I went to the IMAX theater today and then out for pizza. Kinsey actually ate some and kept it down for about an hour. She so enjoys getting out of here, and we are trying to do that a little every day, even though we have to drag the back pack of IV fluids with us and watch that it doesn't back up with blood (as it kept doing tonight). A little nerve wracking but worth it.
I read Kinsey Three Investigators books and these three boy detectives are always getting "trapped." They end up in caves, cellars, and various other scary places, but always manage to get out. They find secret entrances, tunnels, trap doors or some other ingenious way to escape. I feel like that's us. We are trapped and we keep searching the walls, the floor, the ceiling, every crevice to find some little ray of light to the outside world. Some hope of escape. Sitting in Pizza Hut tonight (in the corner away from everyone), I looked around at the few families there and thought, "Look at them. That was us such a short time ago, just a normal family out having pizza." Now everyone looks at us, the family with the cute, adorable little toddler and the beautiful 5 year old who has a mask on her face, whose eyes are darkened, who is sitting in a wheelchair, and who has tubes running out from under her shirt to a back pack on her mom's back. She looks frail and fragile and frightened. She is even afraid of eating too much pizza because she has spent so many hours heaving over a pail that her little eye has a nickel-size bright red circle on her eyeball and that eye droops a lot.
She still has petechiae all over and marks on her whole body: bruises, incisions, scrapes, shaved spots, bumps, and mystery spots. But the whole story is in her eyes and in the way she nervously, constantly picks at her lips and looks around as if she's expecting a monster to walk in and hurt her...again. This morning, Kinsey told me she was scared. I asked about what and she said the transplant. She said she had some questions. I told her to ask and I'd try to answer. She said, "Well, I want to know about the side effects." I told her about each one of the "to-be-expected" ones in terms she could understand. About the nausea and vomiting and diarrhea , she said, "I already have that." About the hair loss (which we'd already talked about) she said, "It'll grow back maybe even better and we can wear hats (I have offered to shave mine, too if she wants and she does want that, she's decided). About the sterility, she said, "That's okay, I'll adopt kids like Mama." I reiterated that the worse fears were infections that would make her even sicker, how truly sick the medicine itself would make her feel, and the possibility that it wouldn't work and we'd have to do something else. She seemed truly relieved. I think her fears of the unknown were even worse than the reality (at least her understanding of the reality).
We are clinging, all of us, to the ray of hope this week offers. We invite you to cling with us for one more week. We ask you to cling to that hope and pray for that reality. I am proceeding as the potential donor and have another appointment tomorrow. Our secondary hope is that should we still end up going to transplant, let her not decline to the point of further reducing the chances of it working. The doctor said there had only been about 10 such transplants for somewhat similar cases in the world, so the stats are hard to consider as they are almost non-existent. "A couple lived; a couple died." The jury is still out about if this is a good approach. He said it's the hardest decision these doctors have had to make in terms of offering us a recommendation. They are somewhat divided as Dr. Margolis's partner believes we should have started tomorrow. And another doctor here said, "Try to find a better match first." We, for better or worse, have put our trust in this doctor and love the fact that his ego does not keep him from seeking the advice of others, seriously considering all options, and weighing all information before committing to a course that will, any way it turns out, forever change all our lives. Lives that have already been changed forever, lives that cling to the possibility of someday returning to some drastically altered but vaguely familiar life.
| Previous | Next |