This week has been a week of clinic trips, radiation and birthday celebrations. Monday began with a trip to the clinic to check Julia’s counts. Her counts were dropping which meant coming back on Wednesday for another blood test. Julia wasn’t feeling very well with a cough and cold that started over the weekend. She was also very tired, so we decided it was best to stay home from school for the few hours before needing to leave for the city and her radiation treatment.
Wednesday morning, Julia woke up with her usual smile, but she could not control her excitement. “Do you know what day it is?” she asked us. With several intentionally wrong answers, causing Julia to laugh her infectious laugh, we yelled “Happy Birthday”. She was so happy – it was her special day.
We had to start the day with another trip to clinic to see how her counts were holding. When we arrived, the nurses had signed a special birthday banner and gave her a special gift. Julia sat under the banner and everyone wished her happy birthday. The best news was her counts were high enough and she didn’t need to get a transfusion on her birthday. Even better, Julia got a reprieve from any more “pokes” until next Monday. We were instructed to watch for any signs of her platelet counts getting too low (nosebleeds, bruising, etc.).
Next, Julia went to school for the rest of the morning. When she got to her class, everyone yelled “happy birthday” and she was able to see all her friends on her special day. I picked her up at the end of school and we began the ride to the city for her radiation treatment. Julia fell asleep soon after I picked her up and slept until we arrived. This has become pretty standard during the car ride to the city as the radiation has made her very tired and naps have become commonplace. Julia only sings to one of the “Nemo” songs now before falling asleep. At the beginning of radiation, she would sing through the soundtrack two times during the ride.
As we checked in for her appointment, Julia’s “radiation buddy”, Joan (who finished treatment the day before), met Julia at the reception desk with a birthday cake to celebrate – another special surprise. We waited for a short while before being called to change Julia into the hospital gown. As Julia walked into the radiation room, her face lit up – balloons, streamers and another celebration banner decorated the treatment room. After Julia got her radiation and shared birthday cake with everyone, we were off to the airport to pick up her brother John (who was coming in for her birthday weekend). We picked up John and drove back home for a few birthday surprises from Mom and Dad and more cake.
Thursday brought school and radiation with her last visit with Dr. Tochner, Julia’s radiologist. Julia will have her follow-up care with the CHOP oncology team and does not need to come back to Penn Radiology. Julia has become very fond of Dr. Tochner and looks forward to her weekly visits with him to show him her newest hat, tell him how well she is laying still during treatments and laugh when he tickles her belly. Dr. Tochner stayed and watched Julia get her scan this visit thru the Linac Room close circuit TV. He said she did wonderfully through the treatments and handled it better than most adults. We can also expect for side effects from the radiation to last for at least two weeks and then they will slowly start to go away. As we went to leave, Julia ran back to find Dr. Tochner to give him a big hug – “I am going to miss you, Dr. Tochner”.
Julia’s final radiation treatment was on Friday. She skipped to the treatment room and gave big hugs to the technicians, Dexter and Maya. Kelly, Julia’s nurse, even stayed late to see her “ring the bell”. When a patient has completed all the radiation treatments, they get to ring a large bell in the waiting area. Julia entered the treatment room and climbed up on the table. Dexter and Maya lined up the Julia’s tattoos to make sure the radiation beam was in the exact place needed while I set up to the CD for the music during her treatment. As we left the room with the “seat belt” holding Julia on the table, she said “See you in a bit and then I get to ring the bell”. Nemo’s song “Just Keep Swimming” played in the background and Dexter, Maya and I all sang along as the door closed on the treatment room for the last time.
At the end of the radiation, Julia quickly got changed as everyone gathered around the bell in the waiting area. She proudly walked out and stood with “her team” as she rang the bell. Cheers rang out and cameras flashed – it was like a prize fighter had just one a match. Joy and tears mixed as we watched her. It has been a long month and Julia is one step closer to her cure.
Saturday, the birthday celebration continued. Julia didn’t have a party last year and wanted to celebrate with all her family and friends. She told us from the beginning that she just wanted to have fun with everyone -“I don’t need any gifts. I have enough so they can give them to CHOP”. Julia continues to amaze us with her spirit, her kindness and her generosity. So the invitations were sent letting everyone know that “your presence at the party is present enough, but if you choose to give something we would be collecting gifts for CHOP”.
Julia took a long nap before the party started so that she would “have all my energy for the fun”. She smiled from ear to ear as all her friends came for the “Pirate and Princess” party. They played, they had their face painted, they moon bounced and we all sang “Happy Birthday” and celebrated another year. Julia had a great time and played non-stop. At the end of the long day, Julia climbed into bed and proclaimed it as the “Best Birthday Ever”.
It was a good week. Lots of smiles and things to celebrate.