Day 2

Today was Summer's second treatment day and it went a bit better than the first. The access line for her port was still in place and working fine, so they didn't have to poke her at all and just hooked the IV up. Walking back into the radiation room was a little scary for her - especially after having been in so many CT, MRI and operating rooms - but they gave her the propofol and she went right off to sleep.

When they called me back to see her, she was already awake (a much faster wake-up than yesterday) and sitting in her bed calmly. She ate and drank right away, and was ready to climb right off the bed and leave before the nurse said she could go home.

We met a couple of the other kids today, and two of the ones whose treatment overlapped with Summer today are also staying at Christopher's Haven - a two-year-old girl who speaks only Spanish, and a 3 year old boy named Spencer. I've been told there's another two-year-old girl staying here who also speaks only Spanish, but her family speaks English as well.

Summer and I ran into Spencer and his family all day. We saw them first at the proton center, then back in the common room at Christopher's Haven, and then we were in appointment rooms across the hall from each other at the Oncology center this afternoon. The nurse there brought out the bubbles and Summer and Spencer had a lot of fun popping them while we waited for our respective doctors.

The afternoon appointment with the oncologist was fine - mostly just a chance to go over Summer's history with him and make sure we're all on the same page since he'll be the primary oncologist for her while we're in Boston. Nothing new came out of the meeting, except a promise to connect us with the neurologist here so we can finally get Summer weaned off of Keppra.

After the appointment, I told Summer we were going home. When we walked in the door of our apartment, she had a meltdown because she thought I mean home, home "with Daddy and Rocky!" Poor kid. 

Summer is still adjusting to Boston time, and the morning anesthesia isn't really helping. She skipped her nap yesterday and I couldn't keep her awake past 7pm. Luckily (well, sort of...), she woke up at 11:30 for a last minute snack before the midnight cutoff for eating. Unfortunately, she was then awake until sometime after 1am. She skipped her nap again today, so hopefully we're not in for the same thing tonight. She probably would have taken a nap around 3 or so, but unfortunately we were at an appointment at that time. Maybe we'll have better luck tomorrow since we don't have any afternoon appointments.