Radiation Begins Again

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 wa

School, Simulation and a Schedule

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

Heading Back to School

We kept things quiet for the week after coming home from surgery. Resting, watching movies and arts & crafts filled the day. By Wednesday, Julia was up for a few visitors and her friends Katie and Katherine came by for a short visit. Thursday morning after dressing and coming downstairs, Julia asked if she could look at herself in a mirror. “Sure honey, there is a mirror in the hallway”. “No Mommy, I want a long mirror – I want to see my body.” We walked down the basement to look at the mirror on the sliding doors. Julia removed her shirt and slowly, carefully ran her fingers along each of her new incisions. “I hope these get lighter – I have enough scars for a little kid.” It was so hard to

Home Sweet Home

Sunday evening as Julia was sleeping, the nurse was able to slowly lower the level of oxygen that Julia was getting until it was no longer being used. During the day, they continued to monitor Julia to ensure that her oxygen level stayed within the limits. Julia woke with a screech of pain on Monday morning. Her back and the chest tube were hurting and she had slept through vitals at 4 AM and did not get her pain meds (the down side of not having an IV and having to wake to swallow pills). The nurse was prepared and quickly gave Julia her medication, slowly the pain subsided. X-ray came in a little before 7 to take a new picture of Julia’s lungs so it would be ready for the surgical rounds.

Slowly Healing

Julia had a fairly good night (Saturday) and slept well. She fell asleep at around 8 AM and didn’t wake until 2 AM. She was in quite a bit of pain and had to go to the bathroom. It was slow moving and the tears came, but she managed to sit up and move to the commode. Julia’s nurse explained to her that it was important to try to move – the more she moved the easier it would become. Julia slowly tried to move her shoulders, easing the pain and stiffness out of her arms and back. She was so brave, knowing it would hurt, but also understanding it would help her get better. Julia slowly and deliberately made it back to bed and feel back to sleep, pushing her pain button as she reached her pillow

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