MILLINOCKET, Maine — Neuroblastoma is a very rare type of cancerous tumor but it almost always affects children.
According to St. Jude Children's Research Hospital, 800 new cases are diagnosed in the United States each year.
William Modery is one of those cases.
September is Childhood Cancer Awareness month and William's parents are sharing his story to raise awareness and shed light on the challenges they face amid the pandemic.
"We were so happy when we found out," said Miranda Kelly, William's mom. "Like I've really always wanted to be a mom."
Miranda Kelly and Drake Modery became mom and dad last summer.
"It was just crazy it's been an amazing year," she said.
And this summer, they celebrated William's first birthday.
"I never wanted to cut his hair at all."
With his first haircut.
"Because I just absolutely loved his curls, you know?"
But the reason is one that no parent needs and his heartbreaking.
"Extremely overwhelming," said Modery.
William was diagnosed with stage 4 neuroblastoma and he is now going through 8 months of treatment, 8 rounds of chemo.
"He's taking it like a champ," said Modery. "He's not letting it bother him one bit."
Before he lost his hair, they shaved it and his dad shaved his own hair too.
Drake and Miranda first noticed something wasn't right when little William was 9 months old. His eyes were yellow.
"He was just really lethargic. His eyes were getting worse and more bruised," Kelly explained.
Eventually, after seeing two different doctors, they received the diagnosis.
Behind his eyes, doctors found tumors.
And there are more in his lungs chest wall, and now bone marrow.
They live in Millinocket and William's care is an hour away in Bangor.
He's had to go to the hospital several times a week and sometimes stays overnight.
And this is all happening in the middle of a pandemic.
They were careful before but even more so now.
"We can't risk anything. We can't risk him getting sick."
Modery and Kelly made the difficult decision to stop working and to remain by William's side.
The community has stepped in to help.
"It's just crazy how many people have come together and are supporting us. Thank you will never be enough," said Kelly.
But it is early in their journey and they have a long road ahead.
"The road ahead is a lot of tests and blood work and chemo and scans and all of this stuff," said Modery. "They said he's got a favorable prognosis. It is in his favor that he's going to get better."
For now, they are taking it one step at a time and sharing their message for all parents.
"Listen to your gut. You know I mean parents know best. I knew something was going on and if I didn't push it then it could have gotten a lot worse," said Kelly.
There is a GoFundMe to support William's cancer treatment.
There will also be a virtual auction in October.
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