Benjamin - Ewing's Sarcoma
Ben was a seemingly healthy and very active 11-year-old boy. He loved sports and was an avid flag football and basketball player. As the oldest of our three kids, he was a dedicated big brother to Lucas (10) and Leah (8).
In the summer of 2023, Ben began complaining of pain in his right leg. Initially, we thought, as everyone else suggested, that it was growing pains or a muscle injury from his flag football season. The pain would come and go, sometimes disappearing for weeks. However, by the fall of 2023, the pain became more persistent, and my maternal instinct told me this could be something serious.
Unable to get an immediate appointment with our doctor, I took Ben to see a physiotherapist. After a month of treatment, she noticed an area of thickness in his leg that seemed abnormal. She advised us to get imaging for peace of mind.
I took Ben to our pediatrician, who, though not initially convinced of anything sinister, ordered ultrasound and X-rays to appease my concerns. After receiving the imaging results, my heart sank when I saw the images flagged with a red "STAT" on the portal. Devastated and afraid, I waited anxiously for confirmation of the results.
On November 27th, 2023, our pediatrician called us with concern in his voice. A large mass was found in the soft tissue surrounding Ben's femur, though he reassured us it could be benign. Despite this, I knew in my gut that it wasn't good. An urgent MRI referral to CHEO changed our lives instantly.
We were called in to see an orthopedic specialist at CHEO, who explained that the mass needed to be biopsied and that it could be cancer. The fear and overwhelm in Ben's face was something I had hoped to never see. He couldn’t return to school, as the doctor feared he could easily fracture his femur, complicating an already difficult situation.
On December 8th, 2023, we received the call confirming that our son had Ewing's Sarcoma, a rare bone cancer most commonly found in children. Telling Benjamin and his siblings about his diagnosis was a heart-wrenching moment. We fielded their questions, soothed their fears, and discussed how we could best support Ben through his treatment. Our children’s ability to communicate and offer support was truly amazing.
We immediately met with the oncology team and began the process to see if Ben’s cancer had metastasized. Fortunately, the cancer had not spread, and he was diagnosed with non-metastatic Ewing’s sarcoma of the femur, offering the best possible prognosis.
The treatment plan was laid out for the next nine months. Ben couldn't attend school, as chemotherapy would make him immunocompromised and vulnerable. He completed six cycles (12 weeks) of chemotherapy.
We then met with the oncology orthopedic surgeon to discuss surgery to remove the tumor and 21 cm of his femur. The surgery, scheduled for March 25th, 2024, involved replacing the removed bone with an allograft and securing it with plates and screws. Those 15 hours were the longest of our lives, but the surgery went smoothly.
In June 2024, Ben began the lengthy road to recovery. This included physical therapy three times a week while completing 11 more cycles (22 weeks) of chemotherapy. Regular appointments and X-rays followed to monitor healing. While his hip healed well, the area above his knee struggled to mend.
Ben’s journey was filled with challenges, but his spirit remained unbroken. After nearly six months of no weight-bearing, he was finally allowed to take his first steps. The pride and emotion we felt mirrored the excitement of his first steps as a toddler. On October 3rd, 2024, Ben proudly walked to ring the gong at CHEO, marking the end of his last admission for chemotherapy.
Returning to school half-days in January 2025, Ben faced the transition with courage and determination. Our January post-treatment scans brought us immense joy as we learned he was NED.
However, in early February, Ben began experiencing pain in his leg and knee again. X-rays revealed that a metal plate holding his femur had broken, requiring another surgery. The surgery involved realigning his bone and placing a bone graft from his iliac sacrum to aid in healing. Despite our anxiety, Ben remained optimistic, saying, “They’re just going to fix it, and I’ll be fine.”
A week later, one of his cultures came back positive for a staphylococcus strain. The team decided to treat it aggressively with IV antibiotics, to protect his leg. Ben will continue to have close follow-ups with CHEO, including scans every three months for the first two years.
Ben has met every challenge with strength and bravery, inspiring us all with his resilience and optimism. We are hopeful that his bone will fuse over the next year, and he will regain full function of his leg. As we look forward to resuming our lives as a healthy and active family of five, we are filled with gratitude. We are so grateful to CHEO for doing everything in their power to save our boy, and his leg. We’ve met some wonderful people along the way, and we’ve been supported by so many family members and friends. This tough road takes a village.