Heartbroken

So much has happened in such a short time. I sit here watching Julia sleep and try to find a way to express everything that has taken place in the last few days. Monday was the first day of school. Julia was so excited and didn’t need any coaxing to get up. She quickly dressed in her perfect “Julia” outfit and came downstairs for breakfast. She was a bit winded but insisted that she was okay and wanted to take the bus. So after the usual first day photos, we walked to the bus stop and she was off for the first day of third grade. I made sure to let her know to ask to come home if she wasn’t feeling up to it. It was a new beginning, but I could not help but feel sad, not excited for the new y

The End of Summer

We picked Julia up from Ronald McDonald Camp last Saturday. What a wonderful time she had! When we arrived, all the kids were in the dining hall. Words can’t begin to express how great it was to see Julia’s smile. After many hugs and kisses (as Julia said “my kiss and hug meter was low!”), Julia was so excited to show us around camp. We had to visit her cabin and meet her counselors and go the “doctors’ cabin” and see Dr. Julie and meet the other doctors and nurses. We also needed to stay until the busses left so we could wave goodbye to all the kids. Ronald McDonald Camp is truly a special place. On the way home (actually only for the first 10 minutes of the ride), Julia told us about all t

Hump Day

On Sunday, Julia left for a week at Ronald McDonald Camp. As hard as it was to let her go and not see her for five days, we knew how much Julia wanted to go back to this great camp. She boarded the bus with all the other kids and after blowing kisses and many waves goodbye (and a few tears), Julia was on her way. Every night we sit by the computer waiting for the daily photos to be posted on the RMC website. Luckily, we have had a little glimpse of Julia and all the fun she is having. Dr. Stern has called twice to put my mind at ease and let me know that Julia is doing well. Today’s call brought an update that her breathing sounds the same as last week – good news. She said Julia is a little

Another Goal – RMC Bound

Julia started chemo on the evening of July 31 for the usual 5 day course – 5 pills a night along with her Zofran and Ativan. She had a scheduled clinic appointment yesterday that included an exam, blood work and x-ray. After her last clinic visit, we were concerned she may not be able to go to Ronald McDonald Camp. Because Julia had experienced some shortness of breath and the doctors heard diminished sounds in her mid-lung, we were worried that the tumor had started to grow again. It was a long 9 days between clinic visits. We got to clinic and Julia quickly was taken back for the x-ray and blood work. Julia then walked back to the day hospital, looking for Dr. Stern as she brought her a tr

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 se

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