Oct 16, 2018 Latest post:
Jul 22, 2019
It all started on September 13th when we found a painless lump on Ava’s left buttock during our bedtime routine. The next day, Ava went to our local pediatric practice where several practitioners examined her and were unsure. We were sent for a stat MRI at our local hospital. We received a call from our doctor and were told that the radiologist was very concerned and we were instructed to go to children’s hospital emergency department. It was there that we were told that Ava had a large tumor that needed to be properly identified to make a diagnosis. We had a biopsy four days later and then the waiting began. It was 6 days until our worst fear became a reality.... Ava had cancer.
Ava was diagnosed with Ewing’s Sarcoma, a rare pediatric cancer affecting approximately 200 kids a year. We were told that to obtain a prognosis, it was necessary to assess if the cancer had spread. The next day Ava was scheduled for an implantation of a mediport to receive her chemo, had bone marrow biopsies, received a PET Scan, and had an ovary removed for preservation.
We received results that her PET scan and bone marrow biopsy were clear and for the first time in two weeks, we were able to breathe. That means her disease is local and not metastatic which gives Ava a 70% chance of beating this horrible disease versus 15%.
We were admitted on September 28th after additional testing to start chemo. Through this all, we have come to learn that Ava was only born with one kidney. Fortunately testing has shown it is functioning to its’ full capacity. We had our chemo for two days and the returned the day after for her neulasta injection to boost her blood counts.
The last week post chemo has been rough. Ava has had severe jaw pain as a side effect from one of the chemotherapeutic agents, along with nausea and poor appetite. Eating has been a real struggle. Ava took a trip to the local ER on Saturday secondary to a fever and has since been admitted to Children’s Hospital for severe neutropenia. So far her blood cultures did not show any bacteria but due to a severely weakened immune system; she is being treated with broad spectrum antibiotics. We will be released when her WBC and more importantly her neutrophils reach a more normal level. We are scheduled for a five day admission in one week for our next chemo.