On Monday afternoon, Julia had a quick visit to the clinic to get labs done before beginning radiation. She was so happy to see everyone and got plenty of hugs. Her counts were great and it was good to get a baseline before radiation starts.
Julia went to play and talk to the nurses, while I spent some time speaking with Dr. Stern about next steps. Julia will have another clinic visit to check labs the week after radiation is completed. Then we will wait 6-8 weeks before scans are taken. This allows for any swelling that can happen from radiation to go down.
As I spoke with Dr. Stern, Julia entertained all the nurses, telling them about how she will be singing for an upcoming event. Julia was asked to sing at an American Cancer Society fundraiser that is honoring the President of CHOP. The ACS requested that she sing “Tomorrow” from Annie and Julia has been practicing to learn the words. Of course, she had to sing for everyone at clinic.
Tuesday was a day off from doctor visits (realizing that the check-up with Dr. Mattei was on Friday afternoon). When Julia got off the bus on Tuesday, you could tell that something was bothering her. She was not herself, more quiet and subdued. We talked for a bit, asking if everything was okay, and she said she was fine, she felt good. Julia did her homework and patiently waited for James to come home for fall break (John was picking him up at the airport). A few hours passed, and soon James was home and Julia ran to his arms. She was so happy to see him – talking and playing before bed.
Julia was especially talkative when I went to tuck her in for bed. James was home and I attributed it to the excitement of the evening, the play and wrestling with her big brother. As we lay in bed, she talked and talked; so excited with having James home.
“You know it is only a month until my birthday. I’ll be eight and I can get my dog”. “I know, Julia, it is so exciting.”
“You know they found a new planet”. “Really, what did they name it?”
“Remember the movie Scrooge and the ghost that turned into the skeleton, I don’t like that part. It is scary”. “I know- I don’t like that part either.”
Julia started to yawn; sleep was beginning to take over. “Mom?” “Yes, Julia.” “I don’t want to die as a child.” My heart sank, a deep breath before responding hoping she didn’t notice the pause. “I don’t want you to die as a child either Julia.” We cuddled a bit closer.
“What’s going to happen tomorrow at radiation?” And there it was – the things that were bothering her earlier that afternoon. “Remember last year when we drove to the city every day and you had to lie very still while you had that special x-ray?” “Oh yeah, I remember that, it doesn’t hurt. That is easy to do.”
“Mom, I need to get rid of this cancer.” “Yes, Julia, that is why all the doctors are working so hard and you need to get these treatments. We all want this cancer to go away.” “I know, Mom, I just need to kick it for good”.
“Can we practice my song?” Julia began to sing… “The sun will come out, tomorrow” and soon drifted off to sleep.
Wednesday afternoon, I picked Julia up early from school and we drove to the city for her first radiation treatment. We checked in for her treatment and Ally, the child life specialist, and Dexter, Julia’s favorite tech from last year, were there to greet her. Quickly, we remembered all the steps from last year and Julia changed into her gown and walked to the Linac.
Julia met the new Linac team, but Dexter was there to show them the ropes. She walked into the treatment room, carrying her CD of choice, Finding Nemo – The Musical, explaining to the new tech that it was a great show and perfect for the treatment room. Julia asked for Dexter to come in to help to get her set up “just right” on the treatment table. Once she was in place, I gave Julia a kiss and we walked from the treatment room, the large protective door shutting behind us, leaving Julia with Nemo and her songs until the radiation was finished.
Ten minutes later, Julia got off of the treatment table and ran out to the control area to give Dexter a big hug. “Thank you for coming”. Julia and I walked to changing room and then stopped at the kids waiting area before leaving. Out of the corner of my eye, I caught Dexter leaving for the day. It was obvious that he waited around to make sure Julia felt safe and comfortable with the new Linac team. A simple act of kindness can make all the difference – we too often forget how good people can be. Thank you, Dexter.
On Thursday, we arrived at radiation and quickly went to change. Dr. Tockner came to check on Julia. “Where’s my girl?” as she ran into his arms to get a big bear hug. They chatted for a bit. Dr. Tockner asked Julia how the radiation was going. “It’s not too bad – I remember it from last year”. Julia said she was feeling ok – just a bit of a belly ache in the morning and I told him that she took a Zofran and it went away. Dr. Tockner reminded us that she may have some nausea and a sore throat by the end of treatment. Julia promptly told him that she would be okay. They hugged goodbye and we waited for Julia’s turn at the Linac.
Friday afternoon brought both a check-up with Dr. Mattei in King of Prussia and a trip to the city for radiation. Dr. Mattei checked Julia’s incisions and listened to her lungs. He was very happy with how Julia has healed and said that you would not know she had lung surgery by listening to her lungs. Dr. Mattei discussed the pathology report from the tumors with us. The right tumor was removed with clear margins (lung tissue was found around the entire tumor). He again explained that he felt comfortable the removal of the tumor in her left lung, but this tumor was deep in the lung and not as well defined as the other tumor. The pathology for this tumor had positive margins, meaning that there were areas of the tumor that did not have lung cells surrounding it. The radiation will work to kill any cells that may have been left behind, but Dr. Mattie felt confident that he had removed the entire tumor. We left Dr. Mattei’s office and headed for the city and the all-important radiation treatments. Julia slept for a bit on the ride to the city – the radiation starting to affect her stamina. We parked that car and woke Julia to go to her appointment. As we sat in the kid’s waiting area, a women entered – “Is this Julia?” It was Joan, Julia’s “radiation buddy” from last year (they had treatments in the Linac rooms next to each other last year). Joan had an oncology appointment upstairs and stopped down to see us before Julia’s treatment. We caught up for a short time until they called Julia for her treatment.
It was a long week. This weekend, Julia got to sleep in and we let her rest as much as possible. Saturday was a day of rest, but we had a busy Sunday. James headed back to school this morning, but he will be home in a few weeks for Thanksgiving. We meet Aunt Rande, Uncle Dan, Morgan and Bruce for brunch (they were up from Georgia for a family wedding) and then, Julia had a birthday party for a friend from school at the bowling alley.
Three days of radiation done and five to go. This week, Julia will go to school and at the end of the day, we will head to the city for her radiation treatments. Treatments that only take a few minutes, but that are so important and so effective against Wilm’s tumor – the treatments that will help Julia “kick this cancer for good”.