September 3, 2008
With apologies to all of you whom I've spoken and/or e-mailed with when I described the pemethexed trial with the expectations that that's what we were doing, I can now tell you all that we will be spending the next seven days in-patient at the Texas Children's Hospital Spa and Getaway. While Erin's CT scan last week indicated we need to change directions, her increased pain and falling appetite indicated that we needed a bigger change in protocol than waiting another week to become eligible for a single agent trial was going to give us. For those of you taking notes, we are going to try five days of topotecan follow by a 48-hour continuous infusion of adriamycin and vincristin (I had the link of the full-text article at my office today, but now I can't find it. I'll look for it later.).
At first we thought the (relatively) benign path offered by pemethexed with weekly clinic visits and an infusion once every three weeks, would fit conveniently into our schedule. Our optimistic selves thought that this route might help us maintain that very active and normal existence we crave and strive for. Erin, however, showed signs that her cancer might not be willing to cooperate with that plan. She did well at school yesterday (according to her teachers), but she required more tylenol at home. Last night she had a pain episode with back spasms and throbbing. I gave her a tylenol with codeine and a back rub. When she recovered, my dutiful child finished her Spanish homework and practiced the piano (this was close to 9:00), then went to bed.
I woke up, convinced that we couldn't wait a week, nor depend on a single-agent trial. A call to the onc, helped us think through our options, and can you believe, we chose the least convenient thing offered: a PICC line and seven consecutive days in-patient. Erin and I are going to treat this as a spa occasion. We're going to watch movies, make crafts (Lara, help! with the lanyard project), and call for the concierge if we need anything special. Erin prospered at school today and did her piano lesson with verve. When I explained she needed a PICC line, and she wouldn't be able to swim for the rest of the month, she asked if I would call Jackson and see if she could swim this evening. I did. She did. And she just got back home (9:00 p.m.). When I told her she would lose her hair again (third time), she said, "well, maybe I can get my hair cut like Mrs. Freeze (who has a very cute, short cut), you know, so people can see a 'V' at the back of my neck. Then they won't really notice that my hair is gone when I lose it in a couple of weeks."
We leave Bryan tomorrow morning at 5;30 to make it to Houston for a 7:30 check-in, PICC line placement, and immediate in-patient stay. We will be there until next Wednesday. We anticipate being bored and lonely, so if you live in the area or can plan a visit, feel free to keep the party going!
If there is wi-fi, I will be updating regularly (we haven't been inpatient in a loooonng time). If not, go read something else.