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2:15 PM (Susan posting): We had a tough time at the clinic. Sophie was due for a spinal tap, but on Fridays they can't do full sedation. They really tried to knock her out as much as they could without an anesthesiologist there (two different forms of sedation, three doses of one and two of another), but Sophie was too worked up about getting a "shot" (especially in her back), that she was completely hysterical any time they came near her back. It didn't help that I asked the doctor about how to administer the emergency glucagon shot when we first got there (which reminded Sophie of the leg shots she got last time we were there), and they administered a numbing cream on her back (which reminded her of the leg shots), and they took her to the "procedure room" (which reminded her of leg shots). We tried injecting her IV sedation in a different room, and they even tried doing the puncture in one of the regular examining rooms, but she was just too upset. She was completely calm (and pretty loopy from the drugs) in between attempts, but as soon as anyone touched her, she would stiffen up and scream bloody murder. Once we decided not to try anymore, they went ahead and injected the vincristine and methotrexate into her IV.

We're just going to do the spinal tap at her next visit (which is on a Tuesday when they do full sedation). She'll be totally agitated then too, I'm sure, but they can knock her out, so it won't matter, and when she wakes up, it will be over. That will be the last treatment in this phase, and then we'll have a break before the next treatment (which is very intensive). Whew! We're exhausted.

Now that her lungs have gotten a little exercise, she seems to think it's appropriate to scream at the top of her lungs if any little thing doesn't go her way (the DVD player isn't loud enough, the McNuggets box won't close because there's a french fry in the way, the straw isn't positioned correctly in her juice box, the sun is "touching" her blanket--pretty much anything that's really hard to take care of while driving). She nearly fell asleep when we got close to home, but when we came inside, Elisabeth was watching her new Barbie Nutcracker video, and Sophie preferred that to napping. Oh, she was so mad at Randall for making her nap, but it didn't last long, and her room is very quiet now. Thank goodness we don't have to do this again for another 10 days.


I'm so glad that the family was able to get away for a vacation! It sounds as though it was a really nice getaway, even if it was only for a few days. I think that Sophie noticed that things went her way at the hospital when she screamed, so now she is trying to see how well it works in other settings. Good old behaviorism! The treatment sounds so stressful for all of you, so I am wishing you much strength during the rest of this round - hopefully this round will be over soon and you can take a bit of a break.