The End of Summer

August 26, 2013

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 the different activities. She had a truly amazing time with all her friends- new ones and old ones. She can’t wait to head back again next year. All the activities of the week and motion of the car soon took hold and Julia feel into a sound sleep for the rest of the ride home.

We arrived home and Julia was so excited to see James and Pop Pop, making sure their hug and kiss meters were no longer “on empty”. She had to unpack and show us all the things she had received at camp. Julia was especially proud of the “Super Hero Certificate” that she received for “Stargirl’s amazing vocal performances”. We have since been told that Julia would often sing for the group at dinner and also go to the “doctors’ cabin” and sing selections from Wicked when she got her daily meds.

That evening, Julia began to complain about her shoulder, saying that it was painful. We gave her pain medication before bed and waited to see what the next day brought. Sunday, Julia said she still had a little pain, but it seemed that it was controlled with Tylenol. We started to think that maybe she just pulled a muscle since she was kayaking, paddle boarding, and canoeing on the lake – definitely using muscles she had not used for some time.

On Monday, James headed back to college. I know how hard it was to leave for him, but Julia gave him lots of hugs and said we would Skype so he wouldn’t miss her too much. James and John left for Florida, while Julia and I stayed home to prepare for school starting next week. Later in the afternoon, the nurse came to check on Julia (not her usual nurse, since Kristen was on vacation). The nurse said that her lung only sounded diminished on the right lower side, so there seemed to be no change since she left for camp.

Tuesday afternoon around 4:15 PM, Julia yelled from the bedroom downstairs as I was working. “Mom, I need my oxygen, I can’t catch my breath”. I ran upstairs, grabbing my phone and dialing the clinic. I got the oxygen on her nose (it was the first time Julia has used it since June). Julia told me her shoulder was giving her so much pain and then she couldn’t catch her breath. As she started to calm down, her breathing got easier, but her heart beat was still rapid. I spoke with Dr. Stern who said we should give her an oxycodone and we could either head to the emergency room or call the hospice. I explained what was going on with the pain and Dr. Julie said this could be a sign of fluid buildup that was causing some pressure. As Julia began to calm down, it appeared that she became anxious when she had some pain, thus causing the difficulty breathing. Julia took off the oxygen as soon as she began to calm down, saying that she no longer needed it. We decided to call the hospice and have a nurse check on her at home. Julia would then go to clinic in the morning. The nurse arrived and Julia’s breathing sounded the same (just the lower right lobe diminished). The only concern was her heartbeat was still rapid – most likely from the pain.

Wednesday’s clinic visit brought no surprises. Pattianne listened to Julia and said she sounded exactly as she did three weeks prior when she examined her. That gave us some relief. Julia’s blood test also showed normal counts and her exam seemed fine. The only oddity was a slight discoloration at Julia’s port, almost as if she had a bruise that was healing. I had not noticed this before and both Pattianne and I then began to think that perhaps Julia banged her port and this was causing her pain. We went home to see what the next 24 hours would bring and to call clinic to report in tomorrow.

Julia had her “Meet the Teacher” later that day. She was happy to head to school to see all her old teachers and some of her friends. It is so hard to believe that school begins on August 26 and that Julia is already starting 3rd grade. Julia was quiet that evening and I was worried something was wrong. She told me that she was a little worried about heading back to school. “What happens if I am behind, Mommy?” “What if I have some pain at school?” “What if I can’t keep up with my friends at recess?” I did my best to calm her fears, but couldn’t help but feel there was something else.

Thursday, Kristen, Julia’s regular nurse, came to visit. When she listened to Julia’s lungs, she said she heard some crackling in her right lung (a sign of fluid building up). My heart sunk to my stomach. Not yet. I phoned the clinic to let Julia’s doctor know and more importantly, discuss if we needed to change course with the Temodar.

When we spoke, Dr. Stern and I discussed the fact that something is changing. We saw a bit of this last month, before Julia was due for her Temodar. Could this be a pattern to expect? Could we start the Temodar sooner? Should we be looking to see if there is a clinical trial that Julia could qualify for? Dr. Stern had already looked into the questions on Temodar. It cannot be given any sooner (a 21 days vs. a 28 day cycle), however she was going to order a slightly higher dose for this cycle. As far as the other questions, Dr. Stern was going to Solid Tumor Conference and would look into other options – perhaps trying oral Etoposide or the possibility of a clinical trial that may be open.

We discussed having Julia have another CTScan, but in reality, what would we do with any new information. It isn’t like there is another course of treatment. This is so unfair! This is my baby and there is nothing I can do to make her safe, to stop this from happening, to protect her!

Friday evening, Dr. Stern called to check on Julia. We are so blessed to have such a good doctor for Julia, someone who truly cares about her. We discussed the increase in the Temodar and to ensure that it was all on order with the pharmacy. She also mentioned that there was a very slight chance there may be a trial opening up this week that Julia might qualify for. There are only 3 slots that will open in all of the country, so she said there was only a small chance we may get a call to come in earlier for CT Scan to see if Julia could be part of this study. Dr. Stern said not to expect anything since there are so few slots open and they would fill quickly. She also cautioned that this is only a Phase 1 trial that measure toxicity levels, not effectiveness. At this point, all we can do is hope that if Julia is to be part of this trial, if it is to be the miracle for her, then it will happen. If not, we need to pray that this is a regular cycle we will see with the Temodar and the higher dose will help eliminate the fluid buildup and hold off any cancer growth.

Friday morning, John and Amanda came home for the weekend. A great thing for Julia – she was so happy to see them. She loves her biggest brother and new sister so much. Even though Julia’s energy level has not been the same, whether from what is going on with the fluid buildup or as a side effect of the pain medication; it was so good for her to see them.

It was a good weekend of family and friends. A good way to enjoy the end of summer, the summer we have not wanted to see come to a close.

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