Family Gets to Treatment Just in Time to Save Their Baby’s Life
Eleven year-old Anders, and his mother, Gini, sat in his doctor’s office in New York for his usual annual follow-up exam. But this appointment was different in a big way. New technology that wasn’t developed when Anders was dealing with retinoblastoma as an infant now allowed him to see pictures of the cancerous tumors in his retina.
Gini was stunned as Anders’ doctor measured the distance between his cancer and the optic nerve. It was less than the width of a strand of hair away from traveling from the optic nerve to his brain, which would very likely have been deadly. And they never would have gotten there in time without help from The National Children’s Cancer Society (NCCS).
The fight for Anders’ life started when he was just a 9-month-old baby. At around six months, Gini and Anders’ dad, Mike, had noticed his eyes weren’t tracking in a coordinated manner. They had never heard of the rare eye cancer, retinoblastoma, and couldn’t imagine at his young age that something was so seriously wrong. But at Anders’ 9-month well visit, their doctor shone her light into his eyes and immediately referred them to an ophthalmologist. A few days later, Anders was diagnosed with cancer.
The Minnesota family started traveling to a specialist nearby for monthly chemotherapy, laser treatments and cryotherapy. Gini could not maintain her job and travel to the lifesaving treatments Anders desperately needed. The travel costs associated with his care combined with the loss of her income understandably took a toll on the family.
Anders sister, Aurora, was tested for the genetic mutation that caused the disease. The tests, thankfully, turned out negative but her little baby brother’s tumors just kept coming back. Then Anders’ tumor bled into his eye because of the laser treatments and without any success … Anders’ left eye was still full of cancer. Anders’ parents were frustrated as they received different medical opinions, but knew they just needed something that would save their son.
They heard about a new treatment being performed by a doctor in New York, Intra-Arterial Chemotherapy (IAC). They wanted Anders to be seen there but didn’t know how they could ever manage the expense of travelling to New York from their home in Minnesota. That’s when their social worker connected them with the NCCS to help with travel costs.
Finally, they met the specialist who believed IAC might work for Anders. They flew to New York every month for a year and the NCCS provided financial assistance for their flights, cab fare and meals.
“We work with Angie at the NCCS and it has been wonderful. When your child has cancer, everything feels monumental but this process was so simple and easy. Angie remembers every detail and makes the planning straightforward,” said Gini.
The IAC treatment DID work for Anders, and his 2nd birthday brought the best news ever. He was cancer- free! As Gini looks back and thinks how they initially had his radiation and eye removal scheduled—she is overcome with emotion.
“There’s no way we would have been able to get the care he needed without the NCCS. When I think about the people who support their services, there are no words big enough to express our gratitude. You’re talking about saving my child’s life!” she said.
Anders is growing up to be a kind, earnest boy who is always helping out both at home and school. An active youth, he is a member of the Duluth curling club and loves being outside with his family; skiing, fishing, kayaking and spending time at his grandparent’s cabin.
Anders is still cancer-free, and the NCCS is still helping his family with his travel to follow-up care.
“Seeing him now and how much he’s grown since being just a little baby with cancer—he’s so happy, healthy and content. The people who support the NCCS made his life possible, and I hope they know when they give a gift how that multiplies and becomes so much more as this beautiful life progresses,” Gini concluded.