Tomorrow is a big day and I dread it so much I am afraid to go to sleep, thinking if I don't, it will take longer to get here. The doctor, as far as we know, is still planning to recommend transplant and will want to begin radiation on Tuesday. That's radiation as in TBI (total body radiation). Kinsey has already been fitted for the kidney protectors and has been through a practice session. She will be asleep for the real thing, however, as it is critical she not move at all and no child her age can be trusted totally not to do that. She has done well with her CAT scans and has a third tomorrow as a matter of fact, but if she moves there it just means they have to do it over. If this goes forward, following three days of TBI, she will begin massive chemotherapy. Some of you may be naive enough to be thinking, "Does this mean she'll lose her hair?" Yeah, and that's the only relatively okay side effect.
The first sentence in the consent form which we have yet to sign:
"ANY COMPLICATION, IN ITS MOST SEVERE FORM, CAN CAUSE DEATH."
Then it goes on:
"When one receives a hemotopoietic cell product which is from a partially matched family member, the general risks include the new bone marrow not growing (non-engraftment), the new bone marrow being rejected (rejection), and developing graft versus host disease (GVHD). If your bone marrow does not grow, or it is rejected, we will attempt to re-transplant you. If this is unsuccessful, you will likely die from bone marrow failure. If you develop severe GVHD, there is a good chance that you will die."
The package of intensive conditioning and stem cell transplant includes the following risks:
This is not a complete list, just the highlights. "How can we sign this?" we ask ourselves. We can, I think, only if he tells us again it is the only real shot she has at surviving this. He told us last week that without it he thought she had 4 weeks to live. He told us, too, that with it the odds are better here than anywhere in the country, about 50/50, but, he added, "There's not a doctor in the world who would give your daughter those odds." He wouldn't give us odds but we gathered that he thought her chance of long term (4 years or more) survival were about 20%. Yet, he had told me, "I need to say this to you: 'I still think we can save Kinsey.'" And he said again on Friday that he believes "she has a shot." Audrey told him he was asking us if we'd rather jump off a building or be run over by a car. He agreed.
Yet, he continues to look for a way out of this option, and he's looked at a variety of ways to avoid the TBI part of it, without success yet. We have one more day for her to magically produce neutrophils or for the bone marrow biopsy they did on Saturday to finally tell them what this bug is that eludes any culture. That fact might send him in a different direction, though he doubts it. The only bit of good news I can hang onto tonight is that she has gone 30+ hours without a high fever and has not needed Tylenol for fever since yesterday afternoon. Also, her mouth biopsy spot looks better. And, most encouraging, she seems to have a little more energy and a slightly better attitude. She got up and walked around today. She went to the playroom. She walked with us to the dining room, and even went for a drive to see Lake Michigan. She wanted to return earlier than we'd planned because she was so tired, but prior to yesterday she didn't even want to go anywhere. Yesterday, we took her to the movies to see Ice Age. These outings were the doctors idea in an effort to "get her on the team." His attitude about infection at this point was, "She's already got one and I think we need to worry more about her mental state than another infection." The movie was a great success. She ate a couple bites of hot-dog and several bites of popcorn (all she's eaten in four or five days). And she laughed out loud. She giggled. It was the sweetest sound I have ever heard or will ever hear. And no matter what happens I will always be grateful to this doctor for giving us that gift. She wants to go to another movie tomorrow, but I am not sure we can pull it off with all that will be going on. I will hope that she wakes with neutrophils, some 11th hour luck, and we won't need to rush. With the transplant regimen, should that begin on Tuesday, she will be in strict isolation and moved to a sterilized room. We'll be back to the masks, etc., for at least a month. And there's no turning back once we start that.
I would start taking injections on Friday. In the meantime I am eating all the iron, calcium, and potassium I can (as each of these were extremely low for me). The doctor I have to see every two days said, "Obviously, you haven't been taking care of yourself." Obviously. It hasn't been a priority. But now it is. Cream of Wheat, raisins, steak, spinach, orange juice, bananas, etc. I feel like I have one week to prepare my blood for a marathon. The injections I would take are not FDA approved for healthy people and can cause some side effects. Because of these side effects, I am required to see a separate doctor in another facility who will never meet Kinsey. I am required to see a psychologist (so I know what I am getting into and will be directed not to feel guilty if it doesn't work). The best I can hope for is to "Get flu-like symptoms with a capital F." The worst is death from spleen rupture. It was after a dad's spleen ruptured that they started the "other doctor" protocol. There is a long list of other potential side effects and long-term side effects are unknown. "So what," I told them. "I would gladly give my life for her so I am not worried about stroke-like symptoms or flu-like symptoms or the loss of a useless organ." They reminded me that Jillian and Kinsey, too, would need a mom. Hey, they've got two. Nevertheless, I am sure I can do this and be fine. The doctor told me not to lie to him (about pain, etc.) and he'd get me through it. I've told her I'll be taking some of the same medicines as her and that I'm a little scared. She has comforted me some saying, Mommy, it's not really that bad." I've told her, too, that I will be happy to shave my head if it will make her feel better. She's thinking about it, but told me this morning she thought that might be "fun" if we both did it and got some matching hats. Aunt Dee Dee has already bought her several and Aunt Ann has offered to make some. Without that olive skin, cute face, and dimples, I've warned her I won't look as cute and might even scare her, but she smiles and says, "Mommy...I won't be scared."
Neutrophils! Neutrophils! Neutrophils! We are waiting for you, with the collective energy of 10 million children waiting for Santa. Please stop by tonight. We are at Children's Hospital of Wisconsin, 9000 West Wisconsin Avenue, Milwaukee, WI 53201-1997. God, please come by and show them the way!
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