He entered remission on June 17th, 2022, the day after his 2nd birthday. After surgery, another sedated MRI was completed and it was determined that his tumor was finally responding to treatment.īennett continued on the intermediate risk VAC protocol and received 28 fractions of proton radiation. This is the moment he became our “Winking Warrior”. On January 27th, Bennett’s cornea ruptured and it was decided to remove his eyeball to prevent further infection spread. Not only were we battling a fast growing, unresponsive tumor, but we were dealing with a very “angry eye”. It was red, completely bulging from his face and became infected due to him being unable to close his eye. Also during this time, Bennett’s eyeball worsened. This led us 885 miles away from home to Cincinnati Children’s Hospital Medical Center, Ohio. After meeting with doctors who felt they needed to speak with a Rhabdo expert due to his tumor not responding immediately to treatment, we decided to seek out the experts themselves. Bennett immediately started chemotherapy treatment, VAC (Vincristine, Actinomycin, Cyclophosphamide) for intermediate risk Rhabdo.Īfter this diagnosis, we searched for a Sarcoma center close to home as Miami, Florida was almost 5 hours away. The mass was biopsied on January 5th and he was diagnosed with Orbital Embryonal Rhabdomyosarcoma on January 7th, 2022. It was decided at this time to biopsy the mass. It had grown by 20% in two weeks and now extended into the cavernous sinus. We again took him to Miami where they decided to do another sedated MRI to check the size of the mass. Two weeks had passed and Bennett’s eye continued to worsen. Doctors in Miami believed the mass in Bennett’s orbit was a Neurofibroma and it was decided not to biopsy the mass at that time. The tumors are usually benign but this condition has a wide variety of symptoms. NF1 is a genetic condition that causes tumors to grow on nerve endings. At birth, Bennett was diagnosed with Neurofibromatosis type 1. Bennett was referred to Bascom Palmer Eye institute in Miami, Florida where he would see an Oculoplastic surgeon to discuss a possible biopsy. On top of finding the mass, Bennett had increased vomiting believed to have been caused by the pressure on his eye. The doctor’s ordered a sedated MRI and discovered a large mass growing in his right orbit. We took him to Nemour’s Childrens Hospital in Orlando, Florida. After several weeks of being referred to an ophthalmologist and waiting to be seen for an appointment, Bennett’s eye continued to bulge. On December 17th, 2021, Bennett’s right eye looked different than it originally had. He was 4 months away from being 3 years old. He passed away 5 days later on February 22nd, 2023. Instead we soaked in the moments, loved our sweet boy and held him in his final days. We decided not to put Bennett through any more harsh treatments that only gave us little time. Bennett received hypofractionated photon radiation and had completed 3 rounds of chemotherapy before we found out his cancer had spread to his brain on February 17th, 2023. He bounced back from surgery at the one week mark and was back to running and playing with his big brother Jameson. Bennett underwent a harsh exenteration & free flap graft surgery where he was in the ICU for 4 days. Four months later during routine scans, an MRI showed his cancer had returned, this time with parameningeal involvement. Bennett entered remission on June 17th, 2022. He received chemotherapy as well as proton radiation during his six months of initial treatment. His tumor affected his eye to the point where his cornea tore and he underwent emergency enucleation surgery to remove his right eye. Bennett was diagnosed with Orbital Embryonal Rhabdomyosarcoma on January 7th, 2022 at the age of 16 months old.
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