Ava Levin OS Fund

Anyone who knows Ava knows that backflips and front handsprings fill her heart and soul. From an early age, she would tumble around our house, walking on her hands until her face turned purple, only to come upright until she could go upside down again.  She couldn’t sit still, taking every opportunity to tumble and twirl. Gymnastics was everything to her. It was in her DNA.

In November of 2022 Ava began complaining of arm and shoulder pain; pain that was so bad it was interfering with her ability to practice and compete in gymnastics.  We immediately took her to CHOP for an evaluation and within a short window of time we received the worst possible news a parent could hear: Cancer.  The pain Ava was experiencing in her arm was actually a tumor in her humerus bone. We had never heard of osteosarcoma and couldn’t have imagined we would be having discussions involving the words amputation or limb salvage surgery in addition to the discussions of chemotherapy, possible blood transfusions, possible infections and reactions to chemotherapy.

Within two weeks of the diagnosis, Ava celebrated her 13th birthday with her brothers and checked into Chop the following morning to have her port placed and to begin the grueling chemotherapy combination treatment for Osteosarcoma known as MAP. MAP is a grueling regimen.  She would need 6 cycles, the first 4 lasting 5 weeks and the last 2 lasting 4 weeks.  Only cycles 5 and 6 would she be able to have part of her treatment done outpatient.

In April, after cycle 2 she had limb salvage surgery and almost all of her humerus bone was removed and replaced with a cadaver bone and prosthetic. The arm that once tumbled across the mats and lifted her over the bar would never again be able to be lifted over her head.  When they brought her back for surgery, the last thing she asked for was to lift her arm over her head once more time.

Reflecting back on those first few days after her diagnosis were some of the darkest days for us. It’s hard for us to talk about, but we cried a lot trying to figure out how we were going to get through it all. There would be no more in person school for Ava, she would lose her hair, she would miss camp, her b’ nai mitzvah would be postponed and heartbreakingly and punch in the gut most painful- gymnastics was over, for sure. The only silver lining would be that Ava’s love of gymnastics, which sustained her for so long, will ultimately be a part of what saves her.

Which brings us to today.  Osteosarcoma is awful but the treatment is as well.  The treatment for this particular cancer  is one of the most challenging and grueling treatments, and it haunts us that it has not changed in over 40 years. The cure rate is not 100% and there are still children suffering relapses from osteosarcoma and other complications and this is just not acceptable. Cancer research is very limited in the pediatric population.

Gabe and I have been overwhelmed with all the love and support of our community. Time and time again people have asked what they can do to help us. The real answer is something nobody can do which is: make this all go away. Since that is an impossible ask we’ve decided that helping to find a cure for osteosarcoma is the next best thing. This will help to support not only Ava, but the many other families who are dealing with this awful diagnosis. To that end, PLEASE consider making a donation to a wonderful place called MIB Agents.  MIB Agents is a a leading pediatric osteosarcoma nonprofit dedicated to making it better for our community of patients, caregivers, doctors, and researchers through programs, education and research.