School, Simulation and a Schedule

October 14, 2012

Julia had a great week back at school. Each day, she woke up smiling and excited to get back to her routine and seeing her friends. It was a fun week at school – Spirit Week – and each day had a different “dress up” theme. From “Clash” day (miss matched colors and patterns) to “Twin” Day (dressing in the same clothes as her friend, Katherine), Julia enjoyed planning her look for each day. Ready to leave, Julia would put on her back pack and we would walk to the bus stop together. A kiss goodbye, and off to school she went; returning each afternoon, bright smile and full of energy, skipping as we walked back home.

I spoke with Dr. Stern during the week and the pathology report confirmed that the tumors that we removed from Julia’s lungs were the same cancer, Wilm’s tumor with favorable histology. Julia will also have an appointment at the King of Prussia clinic next week for labs to check her counts before starting radiation.

Friday afternoon (a change from the original time), Julia had an appointment with Dr. Tockner for her radiation simulation. We picked Julia up from school early and drove into the city. We got their early and Julia was able to visit with Ally, the Child Life Specialist, and also see Dexter, the radiation tech that Julia liked so much from last year (we are hoping that Julia will be on his linac again). Dr. Tockner came into the waiting area and Julia ran to give him a big hug hello. He spent some time talking to Julia and letting her know what would be happening during the simulation and over the next few weeks.

Dr. Tockner then gave us the consent papers to sign. Looking at the date, it was one year, to the day, that we were again signing consent papers for Julia to receive radiation to get rid of this cancer.

We then went back to the CT area so that the simulation could begin. Julia got on the CT table like a pro, knowing exactly what to do – too much practice for a little girl. I stood in the hall, talking to Ally as the scan was completed; then came the part that Julia dreaded and so bravely tried to prepare for – getting the radiation tattoos. “I’m scared Mommy- I don’t like this part” and I stood beside Julia, holding her hand and wiping away her tears, as we counted – 1, 2 (a drop of India ink), 3, 4, 5 and the needle broke the skin – one on her breast bone, one on her belly, one on her left side, and one on her right side. As they wiped away the ink, realizing the left side was not dark enough and this time, I cried as we counted and the needle once again pierced Julia’s skin. Once the tattoos were all checked, Julia sat up and took a deep breath – “I don’t like that, it hurts worse than the IVs and the tubey” and another deep breath and a hug to make the hurt go away. Then there it was, that smile – “I’m okay, it doesn’t hurt so bad now”.

So the plan is in place, Julia has two appointments on Monday in King of Prussia – one with her surgeon, Dr. Mattei, to check how Julia’s incisions are healing and one at the oncology clinic for lab work and a check with Dr. Stern. Wednesday is the start of radiation and it will continue for eight treatments, ending the following Friday. Most of Julia’s treatments will be in the late afternoon or early evening so that she will be able to go to school and see her friends as long as she is feeling well enough.

Until then, we have the weekend to search for the perfect pumpkin for Halloween, have a few play dates, and get lots of hugs, kisses and Julia smiles.

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Julia's Grace Foundation  |  PO Box 1081, Royersford, Pennsylvania 19468