Meet Levi – Medulloblastoma Warrior
“We are so incredibly grateful for this organization because during a time of so much uncertainty they were there to help ease some of our financial anxieties and help us focus solely on Levi,” Danielle explained.
“Levi has always been an amazing, personable, smart and beautiful boy. He loves to wear costumes and make people laugh-his laugh and joy is absolutely contagious. That has never changed, even when he has felt his worst,” shared his mom, Danielle.
In June of 2022, Levi started having stomach aches. Tummy aches were not out of the norm for many 6-year-olds, but when he started experiencing nausea, vomiting, and constipation, his mom, Danielle, took him to the pediatrician for answers. Levi’s doctor strongly felt he was simply experiencing constipation and they were sent home. As he continued to experience these symptoms, his mom took him back to the doctor. This time, his doctor said in addition to constipation, he felt Levi was experiencing anxiety. As someone who knew Levi better than anyone, Danielle knew something was not right.
They tried to live their normal lives- and did what they could to manage the symptoms. To add on to the stress of not knowing what was really going on with Levi, Danielle was also worried about her own health. She was in the midst of getting testing done on an aneurysm in her brain – something that she hoped would be treated soon. While she was at the hospital, Levi’s babysitter texted her “SOS” when she noticed something very wrong with Levi’s eye.
On July 12th, they took Levi to his pediatrician because he had developed a sudden lazy eye and began having issues keeping his balance. This one day changed their lives forever. Danielle rushed her son to the University of Kentucky’s emergency room, and doctors immediately knew what was wrong with him. Levi was diagnosed with medulloblastoma. Two days after his devastating diagnosis, Levi underwent a 10-hour surgery to remove as much of the tumor as the doctors could. In this moment, Danielle knew they had a long journey ahead of them. Danielle eventually returned to work. This was a very difficult decision she had to make, but knew that she still needed to support her family. When things felt heavy and dark, Danielle looked to Levi for inspiration. He has kept such high spirits during his diagnosis and treatment, and Danielle knew that if he could remain positive, so could she.
When it has come to Levi’s treatments and hospitalizations, Danielle said it has been complete teamwork between her and her husband, Kevin.
“Kevin and I now rotate out days that we work and days that we are home but again the assistance from your organization has helped tremendously because we are both working reduced hours.” Danielle said.
Danielle said that in the midst of everything, Levi remained so brave and positive, which helped her cope with the stress of his diagnosis.
“It helps that he does not 100% know the severity, but he is so strong and really doing so well. He is handling treatments very well. He is an inspiration,” Danielle shared.
Levi and his family had no choice but to travel over an hour to get to every appointment for treatment. With the help of the Transportation Assistance Fund from the National Children’s Cancer Society (NCCS), their lodging and travel costs were covered. This was – a huge burden lifted off of the family. When Danielle explained to her NCCS case manager that they would be away for treatment for a few months, they were able to receive assistance from our Emergency Assistance Fund as well.
“The assistance we received from the NCCS has helped to support our transportation to and from hospital visits and appointments as well as gave us one less thing that we had to worry about,” Danielle said.
One thing that truly helped Danielle and her family was receiving our free publications: The Other Side of the Mountain: A Parent’s Guide to Surviving Childhood and Sammy’s New Mask, a coloring book for friends of children with cancer.
While Levi is still receiving treatment for his cancer, he has handled each hurdle with grace and joy. He continues to smile, laugh, and be a constant source of happiness and hope for his friends and family. While at the hospital, Danielle and Levi like to take walks to the gift shop, sharing that it was, just “amazing to see him walk and be happy.”