On Monday, Julia had a clinic appointment to check her blood counts. Her counts remain good and she will not need to go back to clinic for the rest of the week. We then went into the city for her daily radiation treatment. We were able to make it back to school in time for the Halloween parade. “Rapunzel” happily walked around the school playground in anticipation of the Trick or Treating to come. After school, we stopped in to see her friends at the Malvern School. She got to spend a short time there visiting with the “after school club”. When we got home, Julia was able to rest a bit before dinner and the big night. Once it got dark, Julia was dressed and out the door. She walked through the entire neighborhood with her friends Kristina and Samantha, collecting all the Halloween goodies. When she got home, Julia had to check out all her “pirate booty” and help give out candy to the remaining Trick or Treaters. Quickly, Julia got tired and it was time to sleep and dream of all the Halloween treats. We have noticed that Julia’s stamina and energy level has diminished over the last week – an effect of the radiation.
Julia’s radiation treatments have continued through this week. We have settled into a routine to deal with the long commute. Julia has been insistent on listening to the music from the Disney World show “Finding Nemo – the Musical” and of course, singing all the songs. Julia’s particularly likes “Just Keep Swimming” and I have begun to call it her theme song.
“Hey mister grumpy gills Life’s full of little spills Don’t throw your fins up in disgust Oh what’s the use of floatin’ there Not going anywhere? Swish your tail And dive on in And trust… That…if…you Just keep swimming Just keep swimming Life isn’t all that grim! Just keep swimming Just keep swimming Everything will be okay See? Just keep swimming Move your tail And sure enough we’ll find our way Oh sometimes things look bad Then poof! The moment is gone And what do we do? We just keep swimming on”
Julia sings and acts out all the parts of every song on the ride into the city. Her radiation treatments are at the Perleman Center at the University of PA Hospital. It is an adult facility, but Children’s Hospital shares the Proton Therapy machines. Julia continues to hum and sing as she enters into the waiting area – “sometimes things look bad, then poof, the moment is gone, and what do we do, we just keep swimming on”. Her enthusiasm and outlook is contagious. Now that we have finished eight treatments, other patients and the staff are starting to look forward to seeing Julia – to say hello, check out what hat she is wearing today and get some “sunshine” (as one man said).
Yesterday, Julia finished her treatment and started to walk down the hall. She quickly turned around and ran into the control area to give Dexter, one of Julia’s favorite radiation techs, a hug goodbye and to say “Thanks”. Julia proceeded to get changed into her street clothes and we headed to the car for the long drive home with Nemo and Dory playing on the CD. It is the same routine as the ride into the city, only now Julia sleeps by the end of the third song.