The NCCS Connects Family Throughout Cross-Country Cancer Treatment
Meet Jens
Jens is only 8-years-old and has spent half of his life behind the doors of a hospital. He has not been able to return to his home in Nome, Alaska, in almost four years.
Jens went from an energetic 4-year-old boy running around the daycare his grandmother worked at, to a thin boy who could barely eat. Joelene and Dean instantly knew something was wrong with their son, the only question was what? The local doctor could not find the answer and refused X-rays to avoid exposing Jens to unnecessary radiation.
Within the following weeks, Jens became lethargic and all of his energy drained. He could not even play with his older brothers, his favorite pastime. When a visiting doctor from Anchorage was in town, he discovered an orange-sized tumor wrapped around Jens’ kidney. Jens was diagnosed with neuroblastoma, an aggressive, rare pediatric cancer with no known cure.
A frontline treatment conducted in Portland, Ore. was disastrous and almost cost Jens his life when his body rejected stem cells. Jens’ oncologist suggested it was time to consider medical trials.
Following Jens’ first relapse, his family discovered the opportunity to provide Jens with a fighting chance. However, the medical trials were nowhere near the family’s home. But Jens’ parents were not backing down, even if it meant countless plane rides across the country. Little did they know at the time, Jens had a special sidekick in the fight that would help him fly—The National Children’s Cancer Society (NCCS).
Limited trials were available and travel to either Michigan or New York would be necessary. Jens was accepted into the trial in Grand Rapids, Mich. Dean continuously travels with Jens from Anchorage where Jens receives chemo, to Grand Rapids for his primary treatment. With no hospital or blood bank in his hometown, Jens has not returned home since his diagnosis four years ago.
Joelene works at a school library in Nome to maintain insurance for the family so Jens may continue treatment. She spends the summer with Jens but only sees him three times during the rest of the year.
Joelene first heard about the NCCS from a social worker in Michigan during the fall of 2015. The NCCS has since provided their family over $23,000 in support of their travel expenses of airfare and cab fare.
The assistance is critical for the family. They do not qualify for assistance from Michigan since they travel to the location, and do not receive assistance from their hometown since there is no hospital available there. The NCCS is committed to providing financial support to families for the best possible treatment for their child no matter where it is located, and does not have any stipulations like Medicare which refuses to cover medical trials. “The NCCS doesn’t care where you’re going or where you’re from,” says Joelene.
Jens’ cancer has never been in remission. Just this past November the doctors discovered a new spot on Jens’ lymph node, which was diagnosed as 90% neuroblastoma tumor.
“Your heart just falls on the floor, I can’t put my guard down. I’m so reluctant to let my guard down,” Joelene expressed. However, the doctors conducting medical trials and their support system at the NCCS provide her a ray of hope during the darkest days of Jens’ journey.
One day Joelene hopes Jens will walk through the door of their house cancer-free, but until that day the family will continue to strive for a happier and healthier Jens. “When I see Jens happy, when he’s not in pain and doing things that make him happy, I am happy. I just want Jens’ world to be better. His joy brings my joy,” she says.
Jens’ diagnosis has created a drive in Joelene to advocate for an increase in research and resources for families facing childhood cancer. “Children are our future and deserve to see their futures,” concludes Joelene.