Isaac’s Story

Age: 14

Diagnosis: Embryonal Rhabdomyosarcoma

Favorite Things: engineering, skiing, and computers

Meet Isaac, an easy-going 14-year-old hockey player from Waukesha who can frequently be found honing his skills with his brother on their backyard ice rink. Isaac has an incredibly inquisitive mind, always eager to unravel the innerworkings of things. His keen interest in engineering even motivated him to save up and build his own computer last year. He also has a budding interest in skiing and was thrilled to join Camp One Step, along with other survivors and cancer patients, on a ski trip to Park City this past month.

Isaac was introduced to the world of cancer in early October 2020 when he was just 11 years old. After Isaac began complaining about some newly developed jaw pain, his parents brought him in to see his dentist. But when the dentist couldn’t pinpoint the cause of the pain on the right side of his head, Lisa and Dave, Isaac’s parents, began consulting with various specialists, including pediatricians, oral surgeons, and even the ENT who had previously placed his ear tubes several years back. A total of fifteen consultations only led to dead ends. Eventually, an MRI was scheduled, but not until a couple of months later. Meanwhile, what started as minor jaw discomfort rapidly escalated into more severe pain accompanied by nausea, vomiting, and significant weight loss.

In early December, an oral surgeon’s CT scan of the affected side of Isaac’s head suggested a possible healed jaw fracture with a blood clot in a joint. Though the surgeon believed the injury would self-resolve, Isaac’s symptoms only continued to worsen. And, when Isaac began experiencing numbness and swelling in his face, his parents insisted on an immediate MRI. They were so relieved that this scan would finally reveal the cause of Isaac’s pain, but that relief soon dissipated when they received the phone call with the horrific results. There was a 6 cm tumor in Isaac’s sinus cavity pressing on his jaw and extending into his eardrum.

The following day, Isaac and his family headed to Children’s Wisconsin for a diagnostic biopsy. However, as Isaac prepared for surgery, things stalled. Their family’s insurance provider denied coverage for Isaac’s diagnostic procedure, leading to a two-hour phone struggle with no resolution. The ENT doctor advised Lisa and Dave not to shoulder this major financial burden during such a challenging time. He facilitated a transfer to American Family Children’s Hospital in Madison, an hour’s drive away, ensuring that Isaac wouldn’t face additional delays in receiving necessary care.

Once settled at AmFam, a biopsy and additional scans led to Isaac’s official diagnosis- Embryonal Rhabdomyosarcoma, a cancer that forms in the body’s soft tissues. The comprehensive scans also disclosed that the cancer had spread to his lungs and lower back. Isaac was categorized as “high-risk” due to factors such as his age (this cancer typically affects younger children), the size of his tumor, and the metastasis of the cancer. He immediately began his initial round of chemotherapy in Madison; and after settling matters with the insurance company, he was eventually transferred back to Children’s Wisconsin for the continuation of his care.

Another hurdle the family encountered was the differences of opinion between the two hospitals regarding the best course of treatment for Isaac’s high-risk diagnosis. Dave and Lisa sought a third opinion from Mayo Clinic, spoke with a leading rhabdomyosarcoma researcher, and consulted with other parents with firsthand experience. Realizing their new role as Isaac’s advocates, they ultimately decided to follow the plan from Children’s Wisconsin.

Isaac’s oncologist at CW was straightforward with them, “I’m going to put Isaac through a very brutal treatment, but my goal is to cure him.” And brutal it was. He was placed on an exceptionally aggressive chemotherapy regimen- seven types of high dose chemo drugs within a tight 14-month timeframe. Time would be their enemy, and the medical team aimed to deploy every available tool to swiftly eradicate the tumors. The family knew the road would be tough, but they resolved to trust Isaac’s care team and focus solely on a positive outcome for their son. And it was a success. After the first few rounds, the tumors were gone. However, they pressed on with the aggressive treatment to ensure the obliteration of any potentially remaining cancerous cells in Isaac’s body.

In addition to chemotherapy, Isaac underwent six weeks of proton radiation at Mayo Clinic in Rochester, MN. Unlike institutions local to Isaac, Mayo Clinic possessed the necessary technology for proton radiation­, a more precise treatment method compared to standard radiation, necessary for Isaac given the dangerous location of his tumors. This phase of treatment was certainly the most challenging for Isaac. The entire surface of his mouth suffered burns from the radiation, making it almost impossible to eat. Yet, he was determined to not receive a feeding tube and powered through the pain.

Dave, his dad, tenderly holds a picture in his mind of Isaac jumping on an outdoor ice rink they stumbled upon during one of their trips to Rochester. Isaac, zipping around the ice, one side of his face burned from radiation, skin peeling, no hair, a picture of the brutalities of cancer treatment. But, in that moment, Isaac was just a kid wanting to have fun- pushing through the pain to do what he loved most. This memory still fills Dave with a mix of emotions, but mostly pride in his son. No one fights cancer like a kid. Their hearts know nothing but courage.

Isaac reflects that, for the most part, he never viewed his cancer as a deadly disease, except during occasional moments at the hospital when something wasn’t going well. During his hospital stays at Children’s Wisconsin, he found genuine enjoyment in the company of the people around him. Once back home, the comforting presence of his family and a familiar space created a feeling of safety, allowing him to temporarily set aside the realities of his battle and recover in peace.

It has been two years since Isaac completed his treatment and his subsequent post-treatment whole lung radiation. Although he has triumphed over cancer, Isaac and his family continue to grapple with the stress of the follow up scans and the lasting effects of his treatment. The therapy he underwent caused numbness and muscular scarring in his face, requiring him to undergo physical therapy to regain proper jaw function. The growth of the right side of his jaw was also impacted, necessitating extensive orthodontic interventions. Furthermore, Isaac has faced challenges such as vision loss and nerve damage in his right eye. But, despite these challenges, he keeps taking life as it comes and playing his heart out on the ice. Though radiation may have left its mark on his body, it has not extinguished the indomitable spirit that defines young Isaac.

Thank you for supporting research for kids like Isaac. Thank you for giving hope.

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