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Keep Trying

On Saturday, Julia ran up the steps and we noticed that she was out of breath. This wasn’t something that we had noticed for some time and we know we need to keep an eye on any change. We spent the evening at Kimberton fair and Julia had a wonderful time riding the rides and walking the fairgrounds with her friends, Jake and Matt. That night, as Julia slept, both John and I noticed that her breathing seemed “louder”. It wasn’t deep in her chest, but more nasally.

The next morning we decided to call the PACT Team from CHOP to discuss our concerns. They suggested that we call the Hospice nurse and have her come to check Julia’s vital signs. Julia had a play date and we watched as everything seemed normal. The nurse arrived and checked Julia’s blood pressure, heart rate and breathing. She felt that everything was fine and after she spoke with the PACT team to report her findings, we were advised to follow up at clinic during the week.

That night, Julia seemed well; her breathing was not like the night before. She slept soundly and seemed fine in the morning, just a bit tired as I needed to wake her up in time for her tutoring. I called the clinic and scheduled an appointment for the next morning as Julia was doing better.

Tuesday morning, we arrived at clinic and Julia made the regular rounds to say hello to everyone in the reception area. After having her vitals taken, along with checking her pulse-ox level (99 which is good), Julia and I went to wait in Room 1. This is Julia’s favorite exam room because of the big turtle quilt on the wall. We sat together, playing eye spy to pass the time and laughing as Julia somehow always seems to win.

“Mom, will they cure my cancer?” I was taken aback as this is the first time she spoke of this for some time.

“The doctors are trying, Julia”

“That’s okay if they don’t, Mom, because I know you and the doctors will always take good care of me, but let’s keep trying, okay?”

“Okay, Julia, we will all keep trying.”

Julia saw Pattianne, the nurse practitioner, for her exam. After getting a history of what had been happening, Pattianne examined Julia. She listened closely to her lungs and said that it sounded like Julia had diminished sounds in her mid-right lung. This is a change. Since radiation, Julia seemed to only have the base of the lung affected by the tumor. My heart sank.

They decided to take blood to check Julia’s counts and also flush her port. Julia got to spend time with Teri, the child-life specialist. Julia was thrilled as she hadn’t seen Teri for some time. They talked about Wicked (Teri got to see it in Philadelphia, too) and then Julia got down to the business of making another painting. This time Julia painted a brightly colored picture of a girl with blue and white duct tape border around the edges. Printed on the picture in bright read, Julia wrote, “have fun at CHOP”. They hung it up on the wall of the day hospital – a true testament to the wonderful treatment Julia is getting.

Julia counts were fine. After a discussion with Pattianne and Dr. Stern, it was decided to begin Julia’s chemo, Temodar, right away rather than wait for the originally scheduled time next Monday. We just hope that the Temodar works and we get a jump on any effect it could have on the tumor. We will then come back to clinic on Friday, August 9 for Julia to have blood counts and an x-ray. This will give us another baseline before Julia goes to Ronald McDonald camp (something she so wants to do).

Dr. Stern said she would also begin to research any possible studies that may be open that Julia could qualify and be enrolled in. When Julia gets back from camp we can discuss and weigh any options.

We pray that when Julia heads back to clinic next Friday, her lungs sound better. We hope that the Temodar works and most importantly, we pray that there is a new drug trial that opens and Julia is cured.

We can’t give up. We need to keep trying, for Julia.

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