Spencer, 5, of Bath was diagnosed with stage 4 high risk neuroblastoma when he was 3 years old. Photo courtesy of Graham Nelson-Walling
A nonprofit is looking to raise $10,000 this month to send a child from Bath with life-threatening cancer to Disney World.
Spencer Nelson Walling, 5, of Bath was diagnosed with Stage 4 high-risk neuroblastoma when he was just 3 years old.
Doctors first diagnosed his severe abdominal pain that would keep him awake at night as constipation, but Krissy Nelson-Walling, his mother, said she knew something was wrong when he began limping.
“We finally got someone to listen and he was admitted to Barbara Bush to have an MRI done,” she said. “The room became flooded with doctors who said his pelvis is full of lesions.”
A CT scan revealed a very large tumor stemming from his left adrenal gland, found on top of the kidneys. A bone marrow biopsy later revealed that his bone marrow was about 80% consumed by disease, leading to his diagnosis when he was three years old.
“I don’t remember feeling anything after they told us,” said Krissy Nelson-Walling. “It was 72 hours of shock that evolved into relief, which is strange to say, but we felt like we were finally on the right path to making him feel better.”
Neuroblastoma is a rare form of cancerous tumor that almost always affects children and accounts for 7-10% of childhood cancers, according to St. Jude Children’s Research Hospital.
Dr. Sei-Gyung Sze, a physician at Maine Children’s Cancer Program said about 700 children are diagnosed with neuroblastoma each year.
“It’s the most common solid tumor outside of the brain that we see in children,” said Sze. “When it presents in stage 4, it can be very hard to treat. Overall survival is somewhere between 50-60%.”
The Stage 4 designation means the cancer has spread to distant sites such as distant lymph nodes, bone, liver, skin, bone marrow or other organs and often requires more aggressive treatment.
Spencer Nelson-Walling underwent two years of near constant treatment in Boston that included chemotherapy, surgery, stem cell transplants, radiation and immunotherapy.
Over two years the Nelson-Walling family travelled back and forth from Boston Children’s Hospital for near constant treatment that began with six rounds of chemotherapy. Spencer then underwent a nine-hour surgery to remove the tumor. He had two stem cell transplants, twelve rounds of radiation and finally six rounds of immunotherapy that ended in October 2020.
The treatment was brutal on his body.
“It was scary at times,” said Krissy Nelson Walling. “He was 4 years old and 24 pounds. One of the stem cell chemotherapies burned his skin. He couldn’t wear clothes and had to take a showers every six hours to wash off his chemo that excreted from his skin.”
The treatment damaged his teeth, hearing and vision. He now wears hearing aids and will likely need glasses.
“It was horrible, but I don’t think we really had time to come up for air,” she said. “We’ve been on autopilot. Now, we’re at the wait-and-see stage. He still has scans every 3 months to keep an eye on one spot that we’re still watching but there’s nothing on the horizon, and we’re making sure it stays that way.”
After years of traveling to and from Boston for treatments balanced with supporting their five other children, Graham and Krissy Nelson-Walling want a normal family vacation, and California-based nonprofit Campaign One at a Time is working to make it possible.
“We all need to be together and free of stress for a little while without worrying about when our next treatment is,” said Krissy Nelson-Walling. “For everyone to step away and have a fun vacation would be amazing. We all need it.”
Spencer Nelson-Walling said he wants to “ride fast rides” and “go to Mickey Mouse’s house” to meet his favorite characters, Pluto and Daisy Duck.
Campaign One at a Time, which works to impact the lives of children with cancer and their families, had raised $3,650 as of Friday morning with a fundraising goal of $10,000.
Campaign Founder and CEO Brodi Nicholas said he found the Nelson-Walling family through social media and wanted to give them a family vacation after the family of eight has endured years of treatments and countless drives to and from Boston.
“Cancer doesn’t only affect the child that’s diagnosed, it affects their siblings as well,” said Nicholas. “I knew that Disney would be special for the whole family because they could spend a few days in the most magical place, together. They’re a humble, grateful family and when we find a family like Spencer’s, we’re grateful to be able to be part of their journey.”
Donations can be made at campaignoaat.org/spencerstrong.
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