Another New Normal

July 13, 2013

Julia had a clinic appointment on Monday. Everything appears to be stable and she started the second round of Temodar that evening. She will have five nights of this oral chemo and then 3 weeks off. Julia will go back to clinic in two weeks just so we can check if there appears to be any changes.

Julia’s Hospice nurse, Kristen, also comes every week to check her breathing and heartbeat. From past experience, when things change, they changed quickly. Hopefully, the Temodar works and keeps “the beast” at bay, but it gives us some peace of mind knowing that we have someone checking on the off clinic weeks.

Julia is feeling well and so we are keeping her very busy. Tutoring has started again so that she is prepared for school in September. There have been lots of play dates and time to swim. The summer has been busy – busier than usual as we try to do all the things we said we would do on “another day”.

This past weekend, we traveled to DC to help Julia’s cousin Laura get moved into her new condo. Julia and I took that train, while Dad, James and Pop Pop drove. It was Julia’s first long train ride and she was very excited. I think the excitement wore off when she realized that there was not an elegant sleeper cabin and fancy dining car. The apple doesn’t fall far from this tree.

Traveling was a bit different. We couldn’t “travel light” and had to thoughtfully pack, needing to bring all Julia’ medications and her oxygen tank (just in case it was needed). Even though Julia is not taking any pain medication or using oxygen, we needed to be prepared. Another new normal.

I don’t think we will ever be prepared for the day we need to use these things. We continue to pray for a miracle – that Julia is cured, that her doctor’s find a new way to attack her cancer, and that Julia has the future she so deserves. Until then, we are thankful for every day, for the Temodar working, for not needing pain meds and oxygen, and for Julia having a great summer.

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