Godzilla? Not in Tokyo! (D-10)

“Remember tonight... for it is the beginning of always” -  Dante Alighieri

Today was the last day of preparation for the transplant conditioning regime. Elise received her last dose of Palifermin before the series of 8 days of chemo and radiation conditioning starts tomorrow. She also had an appointment with the Radiation Oncology group for a "Radiation Simulation". They did another CT scan and took a bunch of measurements so that they could compute the correct total body irradiation (TBI) dosages. They also marked indexing targets all over her body and then covered them with some clear protection tape so they don't wash off before her treatments next week.

They radiation oncologists are quite careful and meticulous about this process: the measurements and markings are independently verified and the calculations require a formal review process that takes a week. They even make a special mask for her lungs so that they don't get too large a dose. The day before the TBI they will make sure the custom made lung mask is properly fitted and put more indexing marks on her chest for placement of the mask. They said the indexing takes about 45-60 minutes but the treatment will only be about 3 minutes.

Elise also had another session with the teacher. The teacher she working with at NIH has contacted her math teacher in Ridgecrest to tailor the lesson plan for the summer and they've started off on the plan. While I don't think she's thrilled about having a 1 hour math class each day, Elise said she liked the one-to-one instruction that isn't available in the classroom. I hope it helps keep her engaged and helps her cover what she missed during all our trips to NIH in the past 6 months.

Elise is getting pretty self conscious about things right now. She's sure everyone is staring at her. The catheter bandage and hospital bracelet were more than enough to trigger it, but the large number of radiation targets/indexes that are visible put it over the top. She's trying to be tough but she's clearly only got a thin veneer left holding it all together. Being different when you're 13 years old can really suck.

Eventually they decided to let us go out on pass again for the evening. We have to be back first thing in the morning to do vitals, etc before the first dose of Campath. This is where things start getting physically tough for Elise. They say she'll have a strong reaction to it much like the flu. After tonight there will be no night passes until late July which will be somewhere around 30-45 days after the transplant. This is typically the time that her new immune system should be strong enough to handle limited exposure outside the hospital setting.

So we took advantage of the hospital pass and did what Elise wanted to do: see the new Godzilla movie. We took advantage of the nice weather and walked to and from the theater (about a mile each way) which is probably that last outdoor exercise she'll get for a while. The movie was actually better than I anticipated and Elise liked it. All in all a nice evening.