So chemo is done, what’s next. Four weeks from today, Ava is scheduled for surgery to remove her mediport device. She will remain on antibiotics for the next couple months to decrease her risk of getting pneumocystis pneumonia secondary to her compromised immunity. She has been able to go off two other medications, she liked the least,  since chemo has ended. This has made a huge difference in our lives. Her taste for food remains impaired and appetite fluctuates. She is in great spirits and has energy; but by later in the day is wore out more than usual. After her port is removed, we won’t need to go back to Pittsburgh until mid October for her next set of scans. At that time, we will need to return to Cleveland as well to follow up with her orthopedic oncologist. We will follow up every three months this first year and then every four months the second year.  She will decrease to every 6 months from year 2 to 5. At these follow ups, she will have either a chest CT or chest X-ray; as well as an MRI of her pelvis.  She will also get lab work and an echocardiogram. The main purpose of this is to look for a medication induced cardiomyopathy from the doxorubicin she received.  They will also monitor  kidney function as the cyclophosphamide she received can be toxic to kidneys and as we found out the day begin chemo begin, Ava was only born with one.  From year five through ten, she will be seen once a year. During these years, scans will not be performed. The overall purpose of visits during those five years is to monitor long term side effects of chemo. 

     The relapse rate for localized Ewing’s is 30%. It most often occurs in the first two years.  It can occur later but being declared 24 months NED is a big deal.  Ava’s tumor was 100% dead upon removal, and research is showing with complete tissue necrosis, risk for relapse is reduced to around 10%. We are optimistic that this is the end of our treatments.  We are hoping scans get easier with time, as we tried doing it last week without sedation and she moved a lot. It took 2 hours to get the images they needed. Hoping that with age and experience, it is effortless. Thank you all so much. We are fortunate to have you all sharing in our journey.  We are hoping to enjoy the last few weeks of summer while our blood counts rise and we await surgical removal of her port.