Delayed Intensification

We began delayed intensification yesterday, and it was a long day, but it went very smoothly. At 9:30 am Dayssi had her blood drawn, through her port. Didn't even flinch. She had a lumbar puncture (under anesthesia) scheduled for 12:30, so we went to the hospital pre school to kill some time. Dayssi played independently for about an hour with a doll house and the people in it, and I drew pictures of sea creatures with stencils and colored pencils. Very therapeutic, for me. Dayssi finally had her procedure two hours late at 2:30 (it was an incredibly busy day, probably because of the holiday weekend). Piece of cake. She showed absolutely no signs of stress about any of it. In fact, she fell asleep in the stroller watching TV in the waiting room at around 1:00, and stayed asleep until I put her down on the gurney inside the procedure room. When she woke, she looked around, asked to smell strawberries (they put scented oils into the mask) and went right back to sleep. After waking she had a couple of popsicles and a blueberry muffin (first meal of the day, at around 3:30), and had an echo cardio gram (graph? I don't know what the test is called; it is an untrasound of her heart). At 5:00 we were back in the clinic, they gave her a dose of vincristine, and then she was hooked up to an IV drip of a bright orange chemical that looks like anti-freeze. Doxorubicin. It can affect the heart, which explains the echo cardio thing. I have to admit it kind of freaked me out, watching that stuff go into her (most of the drugs so far have been clear), but she was nonplussed, lying with her head on my lap, making up songs ("Mom, I never heard that song before!") . We were home by 6:00 and started steroids again at dinner time. But now she can swallow pills, with juice, just like a grown up. Hallelujah! No more big bowls of foul tasting yogurt. She still takes the Xantac with yogurt, but that is a tiny amount and although she dislikes it, it does not bother her enough to resist.

So, we have Day 1 under our belts. Today Dayssi is tired and a little subdued, and we've upped the frequency of her anti-nausea medicine. But she seems ok.

While in clinic, our nurse practitioner walked me through the plan for the next 8 weeks. I won't report all of the details here, but suffice it to say, she is going to get hit pretty hard. After yesterday's big bang, she gets an intramuscular shot of PEG asparaginase, on Friday. We do steroids for 21 days, with vincristine and doxorubicin once a week for three weeks. Then she gets a week off, no chemo during week 4. Then, if and when her counts are high enough, she starts three new drugs: cyclophosphamide, thioguanine, and cytarabine. The last one is a shot that we give at home for 8 days, during weeks 5 and 6. She gets another intrathecal methotrexate in week 6, and then we get weeks 7 and 8 off, no chemo. Then, it appears that if all is well, we start maintenance.

Just explaining this is completely exhausting.