Will’s journey began when we went for a routine MRI on April 17th. He has something called Li Fraumeni Syndrome, which means that the TP-53 gene that is supposed to protect against any bad cell growth is mutated. So Will has no protection against getting tumors. Therefore, the only protection he gets is an annual MRI to check for anything suspicious.
This one proved to show an abnormal growth, which his oncologist then suggested an immediate X-ray. This only showed more abnormal pictures with no hard evidence of what this abnormal growth was. We immediately scheduled an appointment with an orthopedic oncologist. He was actually out on medical leave, so instead we saw his Nurse Practitioner. She was very informative, and consulted with the doctor who requested a biopsy. A week later we learned that Will in fact had another tumor. This time it was on his left hip.
The next few weeks seemed to last a lifetime while we were seeking second opinions at CHOP. Dr. Halpern encouraged us to do so, since that was what we had done nearly five years earlier to be sure several doctors agreed on the protocol, even as it changed throughout treatment.
On May 23rd, we met Dr. Womer. He specializes in sarcomas and his kindness won me over. Because Will has this genetic syndrome, it seemed natural to want to be at the best children’s hospital. I even looked at Boston and Washington Children’s hospitals. But none made more sense then CHOP.
It was within a week of meeting Dr. Womer that Will began receiving chemo, May 31st, to be exact. Cancer sucks…and chemo sucks more! But I know this is the only thing that can help him survive.
A typical osteosarcoma protocol is to treat with chemotherapy and then surgery. The chemo helps the tumor stop growing and to harden it so surgery will be “easier.” His surgery is scheduled for the end of August.
Our family has been having to drive to and from CHOP from our home in NJ and the weekly drives have been taxing. We also have been having to get hotels when the Ronald McDonald House is not available. This has been trying for us, but we are a strong family and continue to fight hard and stay positive in order to beat this.
Hope session by Elaine Janet Photography | Facebook | Instagram