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Where to Start

Today, Julia went to see the oncologist because I had noticed her breathing was a bit shallow last night. This had also happened in January and after a Friday visit to the Oncology Clinic and a clear chest x-ray, the thought was it was a virus of some type. The next Monday, we went back for Dr. Julie to listen to Julia’s lungs again (Friday they did not sound so good), but her breath sounds seemed fine. I came down with a stomach virus two days later, so it seemed logical Julia may have had the same. After a few days, Julia appeared to improve and was back to her regular activities. The doctor scheduled a Pulmonary Function Test for Julia in mid-February that seemed to go fine and we were waiting for the official results. Last Friday, Debbie called from the clinic and Julia’s 3 month scans were scheduled for March 13.

This Monday, Julia said she “didn’t feel like herself”, but she did not have a fever or sign of a cold. She still wanted to go to school. I started to watch things more closely and last night when I put Julia to bed, I noticed that her breathing was more rapid and shallow. I had John go up and watch as Julia slept and we agreed that I would call the clinic in the morning just to be safe.

Julia wanted to go to school (today was pajama day), so I called the clinic soon after she got on the bus. I spoke with Megan (one of the nurses) and they wanted to see Julia today. So I headed to school to pick her up and off to clinic we went, falling into that all too familiar routine of trips to the oncology clinic and Julia asking if she would be back to school in time for lunch.

During today’s exam, they found that she had diminished lung sounds in her right lung and decided to do the CT scan right away, not waiting for the March 13 appointment.

Julia’s cancer is back. She has several tumors in her right lung and fluid that has built up that is causing her to have difficulty breathing. The doctors decided to admit her to the hospital right away as they want to perform a procedure to drain the fluid. The doctors also meet on Thursday for “solid tumor conference” and will discuss Julia’s case and next steps. They have already started to look for any clinical trials that may be open.

Julia was nervous through the tests today and when we told her the cancer had returned, she remained strong. She questioned why, as we all do, but there were no tears for her, only fight. As we sat in the exam room with Dr. Julie and Eileen (the social worker), Julia proceeded to tell us that she had the best dream last night. “I dreamed that I was all grown up and was doing something good for the world. I put an end to all the wars and I was a doctor too, making other people better”.

So here we are in CHOP again, I am typing another CarePage update as Julia sleeps peacefully beside me. Too many times I have sat at my computer late at night searching for the right words to use as I write these updates. The words don’t come easy tonight.

I hate this beast called cancer that threatens to take away her smile, her dreams. I hate that it grabs pieces of her childhood and tosses them away. Tonight I cry, while Julia sleeps dreaming of when she is “all grown up”. Tomorrow, the sun will come up and Julia starts, we all start, to fight this monster again.

Please say a prayer and send positive energy and love Julia’s way. Pass the word on to everyone you know – we need to all join Julia’s fight and find a cure for this monster.

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