Warrior Walt & his Battle with Stage IV High-Risk Neuroblastoma

Walt, 22 months old, was diagnosed with stage IV high-risk neuroblastoma on July 24th, 2019.  Walt and his family are Native Americans, part of the Lac du Flambeau Band of Lake Superior Chippewa Indian Tribe in Wisconsin.  After their treating hospital didn’t have any more treatment options for Walt, they relocated to Charlotte on September 20th to begin care under Dr. Sholler and her team in the Isabella Santos Foundation Rare & Solid Tumor Program at Levine Children’s.

Walt endured 1 resection surgery, 5 days of cranial radiation to save his eyesight, 2 bone marrow biopsies, 2 stem cell transplants, and 7 plus rounds of chemotherapy.  They also discovered Walt has a gene, which makes cancer spread a lot faster than it normally would.  He was given a 3% chance of a 5 year survival rate.  But on May 29th 2020 Walt was declared NED and was scheduled to go through 6 months of immunotherapy and 3 weeks of radiation to keep the neuroblastoma away.

Unfortunately during his immunotherapy treatment, Walt’s balance seemed off and they discovered he had relapsed to the central nervous system in the spine and lining of the brain.  Additional scans showed another tumor in the abdomen.

Walt and his parents left their tribe, their family and their friends to get the best cancer care possible.  After consults with 4 top pediatric cancer hospitals, Walt’s parents decided to continue care at Levine Children’s, they feel it is the best decision with some of the best doctors in the nation. This will be their 4th relocation to give Walt the best care he deserves.  Since arriving in Charlotte Walt has gone through another resection surgery on the tumor in his belly and started another round of chemo + immunotherapy treatment. 

He is one tough warrior which is how he got his nickname Warrior Walt.  Please keep Warrior Walt and his parents in your thoughts and prayers as they navigate scary treatments and in an unknown city.  Walt is just one example of how your financial support is hard at work, and we are so very thankful.

Warrior Walt’s Diagnosis

“It was just an ordinary day for our warrior family on July 24, 2019, when his Dad and I noticed that his head looked swollen and when he would sleep his right eye would stay halfway open. That’s when we also noticed that his eyeball was starting to get more swollen and looked as if his eye was bulging out of his socket. The next day we took him to the emergency room and his lumps got worse within 24 hours. They did a CT scan and told us, “The scans show that his head has either a blood clot or a tumor, so we want to send you to Marshfield to get to the bottom of what it is.”

When we were in Marshfield that was when they told us, “Your son has something called Neuroblastoma.” I remember the pain, heartbreak and all the feelings that come with being told your child has cancer. I broke down in tears. I remember just crashing to the floor, feeling like all hope was gone and like nothing could get worse at that moment. It wasn’t until a day later I asked, “what stage is it?” The doctor said it was stage four because it’s in more than one part of his body and that he was high risk as well.

From there we got transferred to Children’s Hospital of Wisconsin because doing a biopsy was too risky at Marshfield. His first biopsy was to see if the cancer was genetic. It took a few weeks to get all the results back, but, when we did, we found out it was NOT hereditary (thank the Creator). But then we found out he had the MYC gene, which basically makes cancer spread a lot faster than it normally would. It’s like an on-switch that can’t be turned off. They gave him a 3% chance of a five-year survival rate.” -Walt’s Family

Learn more about where Warrior Walt and his family’s tribe is from:

Lac du Flambeau Band of Lake Superior Chippewa Indians