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It wasn’t the notoriously thin Denver air that caused Erin to faint in the doctor’s chair. Instead, it was the doctor explaining the diagnosis for her then 2-year-old daughter Haven. The diagnosis was neuroblastoma, the most common non-brain solid tumor in children. Haven wasn’t old enough to comprehend the totality of her situation, but her parents could barely understand it either.
“I don’t think you can rationalize it, it’s irrational,” said Erin. “We all think, ‘this will not happen to me,’ and when it does it throws your entire reality for a loop.”
It was back in April 2012 that Haven’s family heard the news that their bubbly, personable little girl would be spending far more time at Rocky Mountain Hospital for Children in Denver. However, Haven hasn’t let the diagnosis slow down her relentlessly curious spirit.
“She loves to try all sorts of new things like basketball, swimming and hockey,” said Erin. “You can’t really tell her no.”
That fierce determination would be a recurring theme in Haven’s harrowing cancer journey. The 10x10 centimeter tumor attached to an adrenal gland was stubborn, insistent on remaining immune to different treatments. As is often the case with neuroblastoma, a disease that varies wildly from case to case, the comfort of certainty proved elusive.
“The doctor said with neuroblastoma there could be somebody that lives for a long time with maybe no secondary effects,” said Erin. “And sometimes there are kids that survive a week.”
Uncertainty turned Erin’s family into “professional time-buyers,” seeking out whatever steps were necessary to prolong Haven’s life. It began with five rounds of chemotherapy and surgery to remove the tumor. Unfortunately, when she was nearly finished scans revealed that her cancer refracted, meaning it was impervious to their treatment options. While her abdomen and chest were tumor-free, two new lesions had appeared on her spine.
“We were desperate because one oncologist told us, ‘You’re basically at 0% chance of five-year survival now,’” said Erin.
Haven’s oncologist started reaching out across the country for options. They tried MIBG therapy in San Francisco, a radioactive treatment where Haven’s parents could only flit in and out of her room briefly. This treatment did manage to decrease the tumor enough to allow for stem cell transplant, but that was just another rung on the lengthy ladder towards recovery.
“We went for three high-dose radiation rounds, so she got her lifetime dose directly to the lesions on her spine,” said Erin. “They were talking about fusing vertebrae and we just couldn’t do that to her at 3 years old.”
Still, the tribulations were not finished. Their cross-country search led them to a clinical trial for the drug fenretinide. An oral, oily powder that mixed with food and drink like oil and water, Haven gulped down three cups of the unpleasant, yellow drug on a daily basis that caused a severe skin reaction. Thankfully it worked, officially putting her into remission. The latest, and hopefully final, step in their journey came over two years ago with a trial for a drug called DFMO at Helen Devos Children’s Hospital in Grand Rapids, Michigan. It targets cancer cell pathways that can drive growth and the drug effectively turns these cells off, preventing further cancer expansion. Haven finally finished the trial in October 2017 and the family is anxiously awaiting her first set of scans this March. Even after Haven’s tumultuous turn in life, the family continues to find moments of inspiration.
“It’s such a devastating thing, but the light that comes from this journey is amazing,” said Erin. “You see the worst of a situation, but you also see the best of people.”
The family’s also seen a fair share of bravery from their sister, now 7 years old, as Haven’s dad Aaron and her brothers Ryder (15) and Cash (11) root for her daily.
“She never asked, ‘Why me?’ It’s never come out of her mouth,” said Erin. “That’s an amazing thing for her to have accepted and do it while remaining the happiest person.”
Perseverance has been Haven’s calling card throughout this entire ordeal. Her brothers have contributed too, creating a fundraising team for The Lemon Climb Denver last year called “Haven’s Highsteppers.”
With the ordeal Haven’s been through, her family is insistent that research is the key to seeing the end of this disease. Most of all, the message they want to impart to others is hope. Even when they were told they had none, they trekked on.
“Never, ever give up the hope. We had oncologists tell us straight up, she will not survive five years and last year, on April 17, was five years,” said Erin. “Don’t ever give up hope. Ever.”
Information provided by Erin Schermerhorn, Haven’s mom
Updated February 2018
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