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May 2022 Hero of the Month: Eli
Diagnosis: Embryonal Rhabdomyosarcoma
Age at Diagnosis: 11 months old
Eli was a soft and gentle soul who found comfort surrounding himself with those he loved. He adored his family and enjoyed sleepovers with his grandparents whenever possible with his older brother Nathan. Music would light Eli up and make his eyes sparkle. His family would dance often, usually after dinner, and his favourite song was an Italian song called Calabrisella. Sometimes Eli would cruise the neighbourhood in his toy jeep with his brother Nathan, with his favourite music blasting out of the speakers.
Eli loved playing sports with Nathan and his oldest brother Isaac. They would play ball hockey in the driveway, or baseball or soccer at the park. Eli loved the park, especially picnics. Eli and Nathan would each grab a blanket and once set up, they would pretend they were chefs with the wood chips. He loved to pick out his favourite snacks for the park, like guacamole and chips, which he would help make from scratch. Other favourite foods included yogurt, steak, pizza, pasta, meatballs, popcorn, chicken nuggets, and ice cream. Eli loved it all.
In December 2019, a month before his first birthday, his parents noticed that his cute chubby belly was hard, and he developed a persistent low-grade fever. They worried he’d swallowed something he shouldn’t have that was causing an obstruction. His pediatrician recommended they take him to their local pediatric hospital for an ultrasound.
At the pediatric hospital, the doctors preformed an ultrasound where a large tumour was found in Eli’s abdomen and he was diagnosed with Embryonal Rhabdomyosarcoma. Like many childhood cancer families, his family was shocked to learn the diagnosis. He was only 11 months old. He was breastfed and ate only homemade food. How could he have cancer?
Connie, Eli’s mom, said, “I felt the wind literally knocked out of me. I remember looking around at all of the kids fighting for their lives and thinking I must have been living in a bubble until now. Thoughts immediately flooding my head and one very vivid thought that I never wanted to have, the thought that I could lose him.”
Eli’s tumour was quite large, so his oncologists moved quickly to start chemotherapy only 48 hours after finding the tumour and before the port was installed. The 14-day stay at the hospital was difficult. The family was diagnosed with the flu, and subsequently needed to stay in isolation. Fortunately, Eli’s tumour responded to chemotherapy and begin to shrink shortly after treatment. The family felt hopeful and spent Christmas and Eli’s first birthday at home.
The constant port pokes, needles, scans, tests, scheduled and unscheduled hospital visits made it difficult to maintain any routine or normalcy. Any fever or illness meant a trip to the emergency room to swab his nose and access his port for blood work. Hospital visits were difficult as Eli was just over one year old and wanted to crawl and explore like any other toddler. Eli had many side effects from the chemotherapy, including diarrhea, hair loss, nausea, fatigue, and sensitivity to sun.
On March 23, 2020, at the height of COVID lockdowns, Eli was scheduled for surgery to remove his tumor. His family learned upon arriving to the hospital that only one family member would be allowed to drop him off and that they wouldn’t be allowed to stay as the waiting rooms were closed. It was extremely difficult, as they were forced to wait for updates on the success of the surgery from a nearby hotel.
Once the pandemic began, Eli’s brothers and family were not allowed to visit. At first, his family and friends would FaceTime, but eventually they had to stop because it would upset Eli too much as he wanted to be with them in-person. Everyone tried to be there as best as they could, but due to the limitations of COVID, it was difficult.
Devastatingly, after attaining remission, Eli’s cancer relapsed in July 2020. The location of the tumours made surgery difficult. Eli was put on a new protocol of chemotherapy for an additional six months and 28 days of radiation. Radiation to his abdomen and rectum area caused him severe pain when he needed to pass a bowel movement. It was torture for him and for his parents because all they could do was rub his back, try to console him, and hope it would pass quickly.
Eli achieved remission for his second birthday. Connie said, “The world was still in lockdown and although we couldn’t celebrate the way we wanted, all Eli wanted was to be home with his parents, brothers, cousins, aunts, uncles and grandparents. So that is what we did – we celebrated his remission, his second birthday, Christmas, and New Years at home together, dancing and enjoying home cooked food and each other’s company. We had no idea this would be the happiest we’d ever be again.”
Eli’s cancer returned again in March 2021. His oncologists suggested two possible options for treatment, including a clinical trial from the US. There wasn’t a liquid or IV form of the drug and his family was forced to dissolve the chemo pills in water, which was hard on Eli’s stomach. His family was frustrated there wasn’t a better option for pediatric patients. Why weren’t their needs considered when developing drugs? But his family was willing to do anything to try to save him.
“We weren’t going to give up on him,” Connie said. “He was always so happy and energetic despite all the drugs pumped into him. As long as he could handle it, we wanted to give him a chance at more life.”
In May 2021, Eli’s belly looked larger and he seemed uncomfortable. Eli’s parents felt the trial wasn’t working. Eli had a scan to check the efficacy of the clinical trial and his doctors confirmed that he had relapsed again and that they were out of treatment options.
COVID made planning for Eli’s hospice care difficult. Due to restrictions allowing only one family member in the hospital, his family avoided the hospital to allow Eli to be around his family as much as possible, as that was what he needed most. Eli died in the same bed he was born with his momma and dadda by his side on June 13, 2021.
Connie, Eli’s mom says, “When we were told Eli had cancer, we decided not to look at the stats and instead focus on Eli. Now these stats haunt me. Did Eli really ever have a fair chance? Eli’s frontline medicines were created in the 1970’s. With only 7 percent of funding going towards research how can new and innovative drugs be created for children fighting childhood cancer?”
“He was our world. He completed our family. There will always be a hole in my heart that can never be filled. There really are no words to make it better and that is why we have decided to just do something. Take action. We will try to make a positive change in Eli’s honour.”
Thank you to Eli’s family for sharing his story. Every month we will honour a different Hero of the Month. If you would like to share your Hero’s story, please reach out to