Radiation #1

What a day.... for many reasons not directly related to Madeleine's treatment! Lately Madeleine has been waking very early each morning, anytime between 3am and 7am (just for perspective, this is not particularly a family of early risers; we typically begin our day around 8:30-9am).

playing at 6am

The morning after Halloween and getting to bed around 11:30, she awoke hungry at 3am.....and didn't go back to sleep without a vibrating bouncy chair and baby Einstein until 7:30. 7:30!! I was afraid to go back to sleep and miss the alarm.

We finally got to the clinic and I carried her into the Linac  and held her in my arms as they prepped her for the sedation. She talked and stared inquisitively at the therapists chatting with them as the anesthesiologist began administering the propofol. The second she feels that medication she practically jumps off the table clinging to me and vocalizing whatever it is she feels. Her head begins to roll a little bit, her eyes get heavy. Her mouth slightly hangs open and she squeals just a little. As her eyes roll backwards with her head movement, there is something very difficult to put into words. In the past we have not accompanied Madeleine into the procedure room to see this happen. Now in radiation, I've seen it twice, and it is hard to witness. 

I had a hell of a time trying to get her oral chemo medicine while she was in procedure. I went back to the clinic, knowing she would be finishing up, to find her already out. One of the nurses was checking her over, and noticed the dressing on Madeleine's chest covering her central line insertion site looked a little like muddy water- a potentially very bad thing. The next 20+ minutes, between the two nurses and I we removed the dirty dressing, cleaned the heck out of it and replaced the clear covering. Unfortunately that was not the end of it; Madeleine was sent to see a doc as well as a chest x-ray to ensure the central line has not moved inside her body. Tomorrow morning we'll change her dressing again while she's still sedated and replace it with a gauze dressing. There are pros and cons to this: the site will air out a little bit and we'll watch the skin very closely to see if the irritation clears up, gets worse or what. If she comes down with a fever or shows puss from the site, it's fairly guaranteed we'll be admitted to the hospital for possible infection management. The bad part of this dressing is that the site is more susceptible to infection and has to be cleaned and changed every other day. Madeleine hates having her dressing changed, as do most children. We finally left the hospital about 3 hours after scheduled, extremely tired. We came home, had some lunch and played with our toys before taking a good nap.

Friday is radiation treatment #2 and we'll stop by quickly to see her doc before the weekend. All next week she begins around 7am, and has her check-up and blood work next Tuesday.