Local boy diagnosed with rare tumor
Benefit bingo to be held in November
MILROY –A 2-year-old New Lancaster Valley boy is currently fighting grade III anaplastic ependymoma cancer, a rare tumor of the brain or spinal cord. To help offset his medical costs, a benefit bingo is scheduled for Nov. 19 at the Milroy Fire Co.
Leevi Fultz, son of Johnathan and Brittni Fultz, was diagnosed in August with the cancer after a visit to Geisinger-Lewistown Hospital emergency room. Prior to the ER visit, Leevi’s family noticed he often would bang his head off of things starting around six-months-old. They did ask the doctor about this, but were told it was normal, but they wish they would have trusted their instincts and pushed harder and maybe his tumor could have been found earlier. Eventually, he started having a slightly altered gait and he was often awake all night screaming and inconsolable. After visits to the doctor, he was first given the diagnosis of an ear infection and then strep throat and put on antibiotics, but soon he suffered from projectile vomiting that led to the ER visit.
The family credits Dr. Reifsnyder at the hospital with saving their son’s life by running tests on Leevi that sent up a “big red flag” and Leevi was life-flighted to Geisinger Medical Center in Danville where two days later he underwent a six-hour neurosurgery to remove a rapid-growing mass that was wrapped around his brain stem. The family was told by an oncologist at Danville that if Dr. Reifsnyder would not have tested Leevi, the family would have soon been planning a funeral for their son.
After surgery, Leevi was unable to hold his head up and could not sit up on his own. With physical and occupational therapy, which he still receives, he was able to push through and eventually learn how to crawl and then walk again. Another obstacle Leevi faced was getting a spinal tap to check if there was any free floating cancer cells in his spinal fluid, because ependymoma only grows in the central nervous system. The test came back negative and the doctors feel they removed 100 percent of the tumor.
Since August, Leevi has been receiving radiation treatments and he is half way through his 33 treatments.
“He goes five days a week and he is sedated since he’s two and can’t stay still,” Brittni said.
Leevi has been at Danville since the surgery and cannot come home until after his radiation treatments are complete. His parents have been living at the Ronald McDonald House during these months, unfortunately away from their other two sons, Aiden, 6, and Leevi’s twin, Wiatt.
“The hardest part is being away from our children,” Brittni said. “Leevi is use to his brothers being around. We have family taking care of them back home.”
After radiation is complete, he will start chemotherapy within a month after. The Fultz’s said chemotherapy is very serious and it’s their biggest fear.
“He can’t get sick or it will jeopardize his chemo,” Brittni said.
He has been losing weight over the months and has been given Pediasure everyday to help retain his weight. Unfortunately, the family has been fighting the insurance company to pay for the Pediasure which is costing around $100 a week, out-of-pocket. He is also needing special moisturizers to help his dry skin caused by the radiation, which the family is paying for. Including travel expenses and the bills at home, the family is very grateful for the benefit bingo to help offset the costs. Johnathan, who is an LPN, is working two days a week and his employer has been very understanding at giving him time off. Brittni is also an LPN and has been a stay-at-home mother.
“We are so appreciative of everyone in the community,” Brittni said. “Everyone is so supportive and people are praying for him. Every little thing means so much.”
The family knows they have a long road ahead of them.
“He’s a tough little cookie,” Johnathan said.
The benefit bingo, which starts at 1 p.m., Nov. 19, at the Milroy Fire Co., will feature food for sale, a Chinese auction with donations of items and gift cards from area businesses, 50/50 drawing and rip tickets. Tickets are $25 and can be purchased in advance or at the door. Pre-orders will be entered for a door prize. T-shirts with Leevi’s handprints, bracelets and window decals will also be available to support the family. The family hopes to make an appearance at the bingo.
Brent Leitzel, Leevi’s uncle, has also been collecting soda can tabs for the Ronald McDonald House to thank them for letting the Fultz’s stay free-of-charge. For every 100 tabs collected, that equals one free night for a family. So far, Leitzel has collected two years worth of tabs. At the bingo, a container will be there to collect tabs.
To purchase tickets, call Shawna Ross at (717) 994-4774 or Jess Ross at (717) 513-2689.