Some Pain, Some Coughs, Some Visitors, Some Smiles

Julia had a rough night last night. As her anesthesia started to wear off, she started to feel more uncomfortable. She was able to use her “pain button” when she wanted and that helped to take the edge off the pain. Julia also got some oral pain meds during the night. Her nurse got her out of bed twice during the night to use the “commode”. It was slow moving, but Julia took her time and was determined to get out of bed. Through the night, the monitors went off – Julia’s respiration rate falling just below the threshold when she fell into a deep sleep. Her nurse would come into the room, checking on everything and then reassuring me it was okay. During the morning, Julia was visited by the s

A Short Night and a Long Day

Last night we prepared as best we could for Julia’s surgery today. Keeping things as normal as possible, Julia came home from school and we reviewed her day and any homework she had to complete. Julia told us that she took both her math and spelling tests a day earlier, so she wouldn’t get behind while she was out because of her surgery. She was so proud to tell us that she got 100 on both tests and “I didn’t even study”! She had a special visit from her friend, Jake, and then went to the market with Daddy to make sure we had some meals for Pop Pop. After dinner, it was time for a shower, packing our bags including plenty of DVDs to watch and activity books to keep Julia occupied. We had to

Update #1

We just spoke with the surgeon and they were able to complete both procedures. Julia is doing well and we are waiting for her to go to recovery. She is so strong!!! Keep the prayers and postive thoughts coming!

Surgery Is Scheduled

Well the week flew by and we did our best to keep things as normal as possible for Julia so that she did not get too nervous. Lots of hugs, kisses, and cuddling at bedtime (that was more for our benefit!). Thank you to everyone for all the prayers and positive thoughts. Keep them coming. Tomorrow is her surgery and we know that it will be a long day. Julia is so strong and has an amazing spirit, but we know that this is a lot for her tiny body to go through. We need to be at the hospital at 6:15 AM and surgery will begin at around 8 AM. We will post a quick status update as soon as we hear anything. Thanks again for all you love and support – we feel it and know that you are all there for us

The Plan is Set

Well the doctor’s meet yesterday afternoon at “Conference” to discuss Julia’s relapse and determine the next steps. The discussion not only included the doctors from oncology, but also from surgery and radiology at CHOP. It is important to remember that Julia’s case is not typical now – there is not a set protocol to follow. There are approximately 500 Wilm’s tumor cases a year in the US with a 95% cure rate. With that being said, there is a 1st relapse of about 25 cases per year. Of those, about half relapse again – only about 12 cases per year. There are not the numbers to gather data and a set a standard protocol of how to proceed. Dr. Stern called on her way home and we discussed the pla

Summer Fades Away

I don’t know where to begin. So much has happened in such a short time. The school year started, along with swim practice and plans to join the local swim team this year. Julia’s brother, John, and his fiancée, Amanda, were home for Labor Day. We had a great BBQ to celebrate their visit. There was even a 24-hour trip to Boston to be part of the Jimmy Find Walk. Last year our friend, Sandi, walked with Julia‘s picture on her shirt and upon seeing a picture of Sandy, Julia was determined to be there this year to walk “to end cancer”. It was such a triumph to watch her cross the finish line this year. Julia had a high fever last Monday. I told her we needed to go to the doctor and Julia asked i

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