I don’t know where to begin. So much has happened in such a short time. The school year started, along with swim practice and plans to join the local swim team this year. Julia’s brother, John, and his fiancée, Amanda, were home for Labor Day. We had a great BBQ to celebrate their visit. There was even a 24-hour trip to Boston to be part of the Jimmy Find Walk. Last year our friend, Sandi, walked with Julia‘s picture on her shirt and upon seeing a picture of Sandy, Julia was determined to be there this year to walk “to end cancer”. It was such a triumph to watch her cross the finish line this year.
Julia had a high fever last Monday. I told her we needed to go to the doctor and Julia asked if she would need a “tubey”. No, I explained this is just to the “little doctor” or pediatrician. It is so difficult to hear, but easy to understand, that with any illness she thinks she will need chemo again.
he visit to the doctor led to being treated for a UTI. The worry came along with any unexplained fever (a sign of Wilm’s tumor), but after 4 days of waiting for results, the UTI was confirmed. Hard to believe that parents could be happy to hear that their child has a urinary tract infection. It was a relief. We knew that her scans were to follow, but it was good to know that her fever could be explained.
Yesterday brought Julia’s 6-month scans – an ultrasound of her abdomen, blood work and a CT of her chest. It was a busy day at the clinic with lots of procedures scheduled because of the holiday and many of the schools being off. Julia was her same brave, wonderful self – talking to all the nurses, telling them about the summer, summer camp at the Malvern School, Ronald McDonald Camp and the start of school. She really does light up the clinic when she visits. She said she was sad to have missed Dr. Julie and Terry (her favorite child life specialist) who were off for the holiday. “I’ll need to come back and visit then Mom, okay?”
First came the “jelly belly” or ultrasound test. Julia likes this test and says it tickles. Then came the IV, blood work and CT scan. We waited as usual for results. The blood work came back first and it was great – so nice to see normal counts again. Then the ultrasound results came back clear. We waited for some time for the CT results. We finally got the word that all looked good and we said our goodbyes – see you in 3 months. A quick call and a few texts to Julia’s brother to let them know the scans were clear and we left the clinic.
Julia was excited to go to lunch and decided we needed to go to Ruby’s Dinner, across the way in the mall. We sat there and chatted about the rest of the day, the upcoming week and our plans for the weekend. I noticed my phone ring, but didn’t recognize the number, so I didn’t answer it, enjoying her company too much and not wanting to spoil the moment.
When we got to the car, I listened to the messages. It was Pattianne, the Nurse Practitioner from the clinic, asking me to call her. It was like a kick in the stomach. I knew then that there was something wrong. When I called back, Pattianne asked if we could come back, we needed to talk about something. The rest is a blur – driving back to the clinic, walking to a room, being introduced to one of the doctors on staff who I hadn’t met before. Julia wanted to stay. She didn’t want to sit with the nurses while we talked. She insisted on being there to hear what was being said. She is so brave.
The CT results were preliminary and a final reading came through. The lung CT shows two small masses – one in each of Julia’s lungs. In the right lung (where the tumors previously were) there is a small tumor on the outer lobe. Julia’s left lung shows a mass in the center measuring about 1.3-1.5 centimeters. A CT of her abdomen needed to be scheduled the next day to get a better picture to ensure that there were no other spots that didn’t show in the ultrasound.
We left – I was in a fog and Julia led the way. A few quick calls as we headed home. Julia asked a few questions on the ride home, mostly about the surgeries she previously had and how long they took. “Two new spots, right mom?” “Right Julia”. “OK, let’s sing something, it will help. Can you put on the Muppet CD?” Julia and I sang on the way home and I watched from the rear view mirror, through my tears, as she fell asleep to Kermit and Miss Piggy singing the Rainbow Connection.
Enough with tears, we got home and it is back to living. Julia would not let me sink too far. She decided it would be a good day to play X-Box and play with her new animal training game, then it was time for Barbie and next it was off to swimming. I was going along with her and Daddy so that I could watch how well she was doing. It is so hard to believe that anything is wrong.
Today, we headed back to clinic for an early 8 AM scan. Julia had to get up early to drink the first contrast before we left at 7 AM. We drove through the rain and the traffic to clinic, talking about what to do after we got home back home. When we arrived, Julia was so happy to see Terry and proudly handed her a small Tupperware container with change she had saved all summer for CHOP. They promptly went on the internet to select some games to buy for the clinic.
Again another IV (it couldn’t go in until she started to watch a movie – a new ritual for Julia along with the usual counting of 1,2,3) and more contrast to drink, then it was off to the CT room. Before Julia got on the CT table she had to jump on one foot, one for every year, seven in all. “It’s for good luck mom and if the scan is good I need to jump again”. Another ritual started – our Julia should be a baseball player. So here we were, Julia and 4 crazy adults (me, Lauri – Julia’s nurse, Terry- the child life specialist and the CT tech) all jumping on one foot.
As the CT started, Julia asked me to sing to her. This was the first time this has happened, perhaps a new ritual for me. “What should I sing Julia?” “How about ‘You Are My Sunshine’, Mom?” a favorite bedtime song since she was a baby. I struggled a bit as I sang the words, more powerful now than ever, looking at Julia to show me how to be brave. We waited for the results of the scan of her abdomen. This scan was clear – the cancer hasn’t spread any further – Julia and I both hopped together.
So now we wait. The Oncology team will meet on Thursday afternoon to discuss Julia’s relapse and decide on a course of treatment. Dr. Mettei, Julia’s surgeon, has been asked to join the meeting. He has already indicated that he can remove both tumors, but the team will need to decide if this is the best course of action. The small tumor on her right lung can be removed laparoscopically, but the larger tumor removal would be more invasive. They need to understand where the radiation field to her lung was, to understand if these new tumors were in the prior field. They need to understand what drugs they can use, ones that will kill this cancer forever.
And we continue to try to understand why.
We will keep everyone posted once we have our family meeting with the doctors. Until then, remember to hop and sing, and send lots of prayers and positive thoughts for Julia.