Neuroblastoma Stage 4.

The words are intimidating. When you hear them while holding your nineteen-month old baby, they’re terrifying.

Kavan, an otherwise pleasant and healthy little boy, had become cranky, developed night sweats and a low-grade fever that wouldn’t go away. His mom, Erin, knew something was wrong. Early trips to the pediatrician produced a diagnosis of the flu, or a virus on top of a virus. No one thinks cancer right away. 

But Erin persisted.

Finally, an ultrasound revealed a tumor in Kavan’s belly, and a bone scan showed lesions throughout eighty percent of his bone marrow.  

Neuroblastoma is a cancer often found in the adrenal glands — the small glands on top of the kidneys. Tumors can develop in the belly, chest, neck, pelvis, and bones. It’s a cancer that affects mostly children.

“All you do for the first few months is research,” Erin says.

And her research revealed that neuroblastoma was aggressive, and that the best long-term outcomes occurred when a child responded favorably to the chemotherapy treatment early on. Because of this, Erin opted for Sloan Kettering’s protocol — a protocol with a very aggressive first few rounds of chemo. A doctor at Hasbro, the local children’s hospital, was willing to do it there so the family could be closer to home. Still, no one can give parents a guarantee, and in the end, Erin had to go with her gut. 

She was warned that Kavan would get very sick from the chemo, and he did. Yet at the end of the first round, a bone marrow aspiration revealed that the cancer had dropped to below one percent. It was the outcome everyone had hoped for.

But this family’s nightmare was far from over. Because Kavan was considered high risk, his treatment was multifaceted. After the chemo his own stem cells would be harvested. Then his tumors would have to be surgically removed. Once he recovered from that surgery, he’d receive a stem cell transplant. Finally, when his body was healthy enough, pinpoint radiation therapy would hopefully kill off any remaining cancer cells. 

Every step of the way, Kavan suffered complications. Before he could have surgery to remove his tumors, he became so septic that he had to be rushed to the emergency room. Months later, after his stem cell transplant, despite every precaution the family could take to protect Kavan’s fragile immune system, he contracted cytomegalovirus (CMV). This common infection is relatively harmless in a healthy person, but for a post stem-cell transplant patient like Kavan, it’s nearly always deadly. He lapsed into a coma, suffered lung failure, and right heart failure.

On Thanksgiving morning, doctors told the family they should say their goodbyes.

“I went to the chapel and prayed on my knees for hours,” Erin says.

But Kavan didn’t die that day, or the next, and he was released from the hospital two days before Christmas. 

Now a curly haired five-year old, two years out of treatment, Kavan bounces through the room laughing. He has virtually no memory of the illness that nearly took his life. 

The family has come through the eye of the storm, and life is very slowly beginning to feel normal again. “Not every single thing is a constant emergency,” Erin says.  

When a neighborhood child was recently diagnosed with cancer, friends of that family turned to Erin for advice. Now, with some time and distance from the experience, she is able to answer with insight and sensitivity.

“Offer to help out with siblings,” she tells them. “Or just sit with mom or dad in the hospital or clinic. Be available to listen. When we’re in the middle of it, we’re just never going to call. You have to take the initiative. And time is really the only thing that helps.”

Kavan, 5

Diagnosed with Neuroblastoma at 19 months