So Far So Good

Dayssi had her PEG asparaginase on Friday without any allergic reaction. It wasn't fun, getting two shots in the thighs at once, especially when she is so unaccustomed to being hurt at the hospital! It is amazing how well they do with keeping these kids from hurting. It really takes the edge off the whole experience, for everyone. Dayssi has told me twice since Friday that she never wants to have pokes in the legs again. I've told her that I don't think she'll have to, which is true, I think, as long as everything continues to go well.

We also shared a room during this experience with a little 5-year old girl who was getting chemo for some other kind of disease that gives her terrible-looking lesions all over her skin. She was very friendly, offering to share her portable DVD player and her toys. And her mom offered us snacks and tea. But Dayssi and I were both a little freaked. I tried hard not to show it but, for the first time I think since this whole business started -- and we are around very sick children a lot -- I felt like I wanted to get Dayssi as far away from this child as I could. I am still so ashamed for feeling that way; maybe it is because I think Dayssi is so vulnerable right now. Probably it is because what the little girl's mom told me was so frightening -- such a threat to my need to believe that when we finish treatment this will be over -- that I didn't even want to witness the possibility. The little girl's mom told me that her daughter had leukemia too and only developed this other disease afterward.

She got something else, equally serious, afterward???? That has to be a major violation of some kind of karma. Although I did see on an A.L.L. email list recently that one mom has two kids with leukemia. Some families on the list have a child with leukemia and a parent with some other kind of cancer. This little girl, in her treatment for T-cell leukemia, had to endure 40 shots of PEG asparaginase (we have 2 in our protocol), after which she got another life threatening disease. And I wonder, under what set of beliefs about God and the logic of the universe can these happenings be justified? It is all just so wrong.

Dayssi, amazing as usual, gave this child a good long stare, but she knew somehow not to make a big deal of the "bumps." She was polite, if somewhat distracted, but I know it got to her too because as soon as the little girl left the room Dayssi climbed on to my lap and said, "Mommy, don't let me get those bumps." I told her I would try my hardest.

The steroids haven't really kicked in yet, although Dayssi is already showing a strong preference for salty foods and she is definitely acting, in cycles, both more subdued and a little more manic than usual. She is really tired too, napping twice a day when she can, and falling asleep before 7:00.

Today we took the girls' bikes across the road to a little park with bike paths on it and we had a picnic lunch over there. Normally I push Dayssi's trike with a handle that comes off the back because she doesn't really know how to ride. Today, for the first time, she got the wheels going around herself with the pedals and was thrilled to be her own motor. We need to work on the concept of steering though. When I told her to turn her arms in the direction she wants to go, she let go of the handle bars and pointed. At least it was in the right direction! We'll get there.