We celebrated our Fall birthdays, watched the last days of the Olympics, and just played.
Before we went to the hotel Amy and I noticed Abby running a fluctuating but low-grade fever. She also seemed unusually tired, but snapped out of it while we were at the Pointe, though she did nap. Yesterday and today, however, she has slept a great deal more than is normal for her.
Dr. Sapozink (our radiation doctor) warned us that we might see this behavior, but we didn't think it would happen this long after she stopped radiation therapy. She has no other symptoms really. You might recall that this was one of the precursors to her first seizure--the two mornings prior to the seizure she slept unusually long. Now she is on Keppra, so we are worried that the tumors may have returned but the Keppra is suppressing the seizures (as it should).
Amy and I had picked today to fast until evening and pray for God's guidance surrounding if we should have another opinion, or proceed with the chemotherapy. So please pray with us--I am taking Abby to the oncologist this afternoon to see if we can figure out what is going on.
We plan to pray about what to do next and consult with our oncologists, Dr. Packer, and others. We may seek yet another opinion or try to get the different pathologists to possibly have a phone conference to achieve some sort of consensus. We may also proceed with the chemotherapy protocol and stem cell infusion which was the original plan. The treatment for the ATRT and for the PNET type of tumors are the same.
So, please continue to ask God to guide all those involved in Abby's case. Also, pray that we will come to a timely conclusion. She has an MRI scheduled for September 16 and her first chemo treatment will be about 2 weeks after that.
In the meantime, we're all enjoying being a normal family again free from the chicken pox!