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Leevi is a kind and giving little boy with a heart of gold. He is always the first person to lend a hand and the last to leave when the job is complete. He will do anything to make someone smile!
When Leevi was 6 months old he started banging his head. Concerned, his parents took him to the local pediatrician, who told them to “ignore the bad behavior and he will stop.” But as Leevi got bigger, the head banging worsened in severity. He was taken to multiple doctors in hopes of getting answers, but all were the same.
Then a year and a half later, Leevi began walking with an altered gait. This continued for months before Leevi became extremely irritable and inconsolable. All of this made his mom, Brittini, so uneasy that she took him to another doctor. This doctor felt strongly that he had a bad case of strep throat and prescribed him antibiotics. Unfortunately, things didn’t get any better for Leevi.
His parents had to wrap his crib in pool noodles to prevent the head banging from making him bleed, and always stayed by his side ready to intervene if his behavior escalated. About a week after his second birthday, Leevi began vomiting but denied feeling sick. Then came a headache so bad he was crying and screaming. After projectile vomiting, Leevi claimed his head felt better, but his parents decided to take him to their local emergency department. There, a CT scan finally revealed the source of Leevi’s pain: anaplastic ependymoma.
The mass was in the fourth ventricle of his brain and wrapped around his brain stem, and he needed to begin treatment as soon as possible. Leevi was flown to the hospital where many more tests were performed. On August 28, 2017, Leevi underwent an eight-hour neurosurgery that resulted in a complete resection of the tumor. As a result of the surgery, Leevi lost the ability to feed himself, hold his head up, sit up unassisted, crawl and walk. Leevi completed physical therapy, occupational therapy and had a mediport placed. At the end of September, he started receiving radiation treatment.
By November, Leevi was able to return home with his family. In the meantime, he was entered into a clinical trial, and his name was chosen to receive chemotherapy. His little body had a hard time handling the treatment. He lost a lot of weight and developed mucositis, neutropenia, random infections and more. Sadly, because of the treatments, Leevi now wears hearing aids due to hearing loss, glasses due to depth perception issues and has a power wheelchair for outings due to the inability to walk long distances. Leevi will also randomly vomit due to a poor gag reflex.
Unfortunately, in June 2021, a maintenance MRI showed reoccurrence of tumor in the fourth ventricle of Leevi's brain. On July 30 he had a repeat sub occipital craniotomy with duraplasty and titanium plate placement to hold skull together. Post surgery he saw multiple oncologists, radiologists and even neuro oncologists to seek further treatment to hopefully help give Leevi a better chance at long-term remission. His family was told there were no options for further treatment nor were there any clinical trials available. But they were not about to give up hope. They searched for clinical trials Leevi might qualify for. This led them to Memorial Sloan Kettering Cancer Center in New York, where they were informed by an oncologist that there was a clinical trial Leevi may qualify for. The trial involved radioactive isotopes, and samples of Leeiv's tumor were sent off for in-depth pathology to check protein markers. If Leevi's protein markers are a match for the trial, he will undergo much more than his initial treatment.
Brittini hopes her son never forgets how strong he is. He is her hero because of how brave, determined, sweet, loving and kind he is. She prays he remains in remission, and always follows his heart. Brittini thinks he could have a bright future as a pediatric oncologist, but if you were to ask Leevi, he would tell you that he wants to be a farmer. He is obsessed with John Deere tractors.
For those also facing a childhood cancer diagnosis, Brittini says to stay strong and keep fighting! No journey is the same and there will always be obstacles. When those obstacles seem overwhelming, look to Alex’s Lemonade Stand Foundation for hope: hope for a cure, so that no child will have to battle cancer.
Information provided by Brittini Fultz, Leevi’s mom
Updated November 2021
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