Bennett was diagnosed with Orbital Embryonal Rhabdomyosarcoma on January 7th, 2022 at the age of 16 months old. His tumor affected his eye to the point where his cornea tore and he underwent emergency enucleation surgery to remove his right eye. He received chemotherapy as well as proton radiation during his six months of initial treatment. Bennett entered remission on June 17th, 2022. Four months later during routine scans, an MRI showed his cancer had returned, this time with parameningeal involvement. Bennett underwent a harsh exenteration & free flap graft surgery where he was in the ICU for 4 days. He bounced back from surgery at the one week mark and was back to running and playing with his big brother Jameson. 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. We decided not to put Bennett through any more harsh treatments that only gave us little time. Instead we soaked in the moments, loved our sweet boy and held him in his final days. He passed away 5 days later on February 22nd, 2023. He was 4 months away from being 3 years old.
On December 17th, 2021, Bennett’s right eye looked different than it originally had. It was bigger than the other eye. After several weeks of being referred to an ophthalmologist and waiting to be seen for an appointment, Bennett’s eye continued to bulge. We took him to Nemour’s Childrens Hospital in Orlando, Florida. The doctor’s ordered a sedated MRI and discovered a large mass growing in his right orbit. On top of finding the mass, Bennett had increased vomiting believed to have been caused by the pressure on his eye. Bennett was referred to Bascom Palmer Eye institute in Miami, Florida where he would see an Oculoplastic surgeon to discuss a possible biopsy. At birth, Bennett was diagnosed with Neurofibromatosis type 1. NF1 is a genetic condition that causes tumors to grow on nerve endings. The tumors are usually benign but this condition has a wide variety of symptoms. 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.
Two weeks had passed and Bennett’s eye continued to worsen. We again took him to Miami where they decided to do another sedated MRI to check the size of the mass. It had grown by 20% in two weeks and now extended into the cavernous sinus. It was decided at this time to biopsy the mass. The mass was biopsied on January 5th and he was diagnosed with Orbital Embryonal Rhabdomyosarcoma on January 7th, 2022. Bennett immediately started chemotherapy treatment, VAC (Vincristine, Actinomycin, Cyclophosphamide) for intermediate risk Rhabdo.
After this diagnosis, we searched for a Sarcoma center close to home as Miami, Florida was almost 5 hours away. 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. This led us 885 miles away from home to Cincinnati Children’s Hospital Medical Center, Ohio. Also during this time, Bennett’s eyeball worsened. It was red, completely bulging from his face and became infected due to him being unable to close his eye. Not only were we battling a fast growing, unresponsive tumor, but we were dealing with a very “angry eye”. On January 27th, Bennett’s cornea ruptured and it was decided to remove his eyeball to prevent further infection spread. This is the moment he became our “Winking Warrior”. After surgery, another sedated MRI was completed and it was determined that his tumor was finally responding to treatment.
Bennett continued on the intermediate risk VAC protocol and received 28 fractions of proton radiation.. He entered remission on June 17th, 2022, the day after his 2nd birthday. We traveled back home to Florida where Bennett thrived. We made memories as a family and visited Disney several times. Bennett was so happy to finally be away from the hospital. He also fell in love with food again.
On October 21st, 2022 Bennett and I (mom) traveled to Cincinnati for his 3 month scans and received the news that Bennett had relapsed. His cancer was back, found in both the orbit and the cavernous sinus. It was decided that Bennett needed an Orbital Exenteration surgery, along with photon radiation and harsher chemotherapy to kill the cancer for good. Our family moved back to Cincinnati for this second battle.
Bennett received his orbital exenteration surgery on November 14th. Unfortunately this surgery could not remove all of his cancer and he would still have a small 2 cm tumor located along the optic nerve in the cavernous sinus. Bennett completed 5 fractions of Photon radiation to the cavernous sinus and orbit in December of 2022. His third round of chemotherapy started three weeks after. The chemo protocol this time around was planned to be harder than before. He was to receive Vincristine, Irrenotican, Doxorubicin, and more.
On February 15th, 2023, Bennett was taken to the hospital for dehydration. We saw a significant decline in his health in the weeks prior and became very concerned. We were not sure if this was due to the harsh treatments or something worse. During this hospitalization Bennett had his first seizure and it was determined after an MRI that he had Leptomeningeal Disease and the cancer had spread to his brain and spinal cord. He was placed in the ICU on a ventilator as he recovered from his seizure. We were given options to give us a little more time but we couldn’t. As his parents, we chose to cherish the small amount of time he had left and not put Bennett through anymore treatment trauma. We had to do what was best for Bennett. He passed away one week later on February 22nd, 2023 at 2:50am with Mommy & Daddy by his side. He was finally free.
Bennett was brave. He was full of love, light and always kept us on our toes. His voice, laugh, and noise are missed and our house will never be the same. We will forever share the story of our sweet boy and keep his light alive as long as we live.
Our journey, just like any other cancer journey was hard. It was hard to not let fear take over and to think about “what if”. We had to live in the moment and we did just that.
Orbital Rhabdomyosarcoma has a high survival rate. This gave me a false sense of confidence. There are so many success stories with Orbital Rhabdo, I found myself going through the motions and thinking that Bennett’s first battle of cancer was “easy”. He rarely had side effects from chemo, he didn’t need an NG tube for nutrition, he became neutropenic once. I often lived in a mindset where holding your child while they got sedated for MRI’s, radiation, and PET scans was just a normal Tuesday. I was absolutely wrong.
It was hard. Harder than I ever imagined. I was living in a sense of “fight or flight” mode and after Bennett relapsed, I realized how hard the last year had been. It was also about to get even harder. What made it even more difficult was having a young child who was unable to fully communicate how he was feeling. He also didn’t fully understand what was going on. Bennett also experienced trauma related to his treatments. The second a nurse started putting on gloves, he was very vocal and told them to “go away”. If someone offered him a sticker, he would start crying because he thought his port was getting accessed. He didn’t fully know what was coming, but he remembered what he had experienced in the past and it broke our hearts.
As he grew older his communication improved, but caring for a toddler who underwent major surgeries, radiation, and scans all under anesthesia is something no parent should have to do. Bennett was sedated more than 50 times in his 15 month battle with Rhabdomyosarcoma, more than most adults are sedated in a lifetime.
Looking back, though it was a challenge, I am thankful that Bennett was so young at his diagnosis. He easily forgot that mommy just held him tight to get his port accessed and quickly forgave after mommy flushed his “tubie”. He didn’t fully know what was going on or that he even had a life threatening illness, but I believe that’s what kept his spirit alive for so long, even after his cancer spread to his brain. He still smiled, he still laughed, he still bossed us around, just as Bennett always did.
Before Bennett was diagnosed, there was a total of 4 weeks between when we noticed his eye looked different to when he received the diagnosis of Rhabdo. 3 weeks after his initial MRI, they finally biopsied the mass. This was way too long, especially for a child with NF1 who had a mass in his orbit. Doctor’s should take into account children with genetic conditions that have a higher or even moderate risk for cancer.
Once Bennett relapsed, the treatment protocols were left to the parents and the doctor to decide. It was our choice of how hard of a treatment we wanted to put our child through.This is something no parent should ever have to decide. Ultimately it was a gamble on what treatments would work and I heard the term “uncharted territory” several times, yet, I have heard so many heartbreaking stories of relapsed Rhabdomyosarcoma. Though we are heartbroken we lost Bennett so early into his second battle, we are grateful his poor body did not have to go through any more harsh treatments.
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