A nonprofit wants to raise $ 10,000 this month to send a Bath child 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 stomach pain that would keep him awake at night as constipation, but Krissy Nelson-Walling, his mother, said she knew something was wrong when he started limping.
“We finally got someone to listen and he was admitted to Barbara Bush for an MRI,” she said. “The room was flooded with doctors who said his pelvis is full of lesions.”
A CT scan revealed a very large tumor originating 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 turned into relief, which is strange to say, but we felt like we were finally on the right track to make him feel better.”
Neuroblastoma is a rare cancer that almost always affects children and is responsible for 7-10% of childhood cancers, according to St. Jude Children’s Research Hospital.
Dr. Sei-Gyung Sze, a physician with the Maine Children’s Cancer Program, said that about 700 children are diagnosed with neuroblastoma each year.
“It is the most common solid tumor outside the brain that we see in children,” said Sze. “If it occurs in stage 4, it can be very difficult to treat. Overall survival is somewhere between 50-60%. “
The stage four designation means that the cancer has spread to distant places such as distant lymph nodes, bones, liver, skin, bone marrow, or other organs and often requires more aggressive treatment.
For more than two years, the Nelson-Walling family traveled back and forth from Boston Children’s Hospital for near-constant treatment that began with six rounds of chemotherapy. Spencer then underwent nine-hour surgery to remove the tumor. He had two stem cell transplants, twelve rounds of radiation, and finally six immunotherapy that ended in October 2020.
The treatment was cruel to 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 shower every six hours to wash off his chemo that was secreted from his skin. “
The treatment damaged his teeth, hearing and vision. He now wears hearing aids and probably needs glasses.
“It was awful, but I don’t think we really had time to come up,” she said. “We’ve been on autopilot. Now we are in the waiting stage. He still has scans every 3 months to keep an eye on a place we’re still checking out, but there’s nothing on the horizon, and we’re making sure to keep it 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 on it to make this possible.
“We all need to be together for a while and free from stress without worrying about when our next treatment is,” said Krissy Nelson-Walling. “It would be great if everyone left and had a nice holiday. We all need it. “
Spencer Nelson-Walling said he wants to “go for fast rides” and “go to Mickey Mouse’s house” to meet his favorite characters, Pluto and Daisy Duck.
Campaign One at One, which aims to impact the lives of children with cancer and their families, raised $ 3,650 Friday morning with a goal of $ 10,000 to raise money.
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 endured eight years of treatments and countless rides to and from Boston.
“Cancer affects not only the child who is diagnosed but their siblings,” Nicholas said. “I knew Disney would be special for the whole family because they could spend a few days together in the most magical place. They are a humble, grateful family, and when we find a family like Spencer’s, we are grateful to be a part of their journey. “
Donations can be made at campaignoaat.org/spencerstrong.
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