Little Red Stories

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One week after Leevi and his twin brother celebrated their second birthday Leevi got sick. On August 25, 2017 Leevi was taken to a local emergency because he was inconsolable and vomiting. Thankfully, the doctor that was working ordered a CT Scan that showed a mass in Leevi's brain. Leevi had to endure the pain of having an intraosseous line placed due to dehydration. Leevi was then flown to Janet Weis Children's Hospital for fear of increased intracranial pressure. Leevi remained stable and received Neurosurgery on August 28, 2017 that lasted seven grueling hours. a few hours later we received the Pathology report that turned our world upside down: Leevi had brain cancer (grade 3 Anaplastic Ependymoma). Leevi was stable following neurosurgery but physically was back at square one. Leevi could no longer hold his head up independently, pull himself up to a standing position, feed himself or walk. Leevi started vigorous PT and OT. During this time we met up with his Radiologist and Oncologist to come up with a game plan. Two days after neurosurgery Leevi was discharged from the hospital but we remained on site for the following three months at our local Ronald McDonald House. For the next three months family members cared for our other two children; Aiden aged 6 and Wiatt aged 2 while we gave Leevi every fighting chance we had. Two weeks post-op Leevi went back under general anesthesia to have his Mediport placed for his upcoming treatments. Two weeks after his port was placed Leevi started his cycle of 33 intense radiation treatments to his Posterior Fossa. Leevi fought through the radiation but had a very hard time with the Chemotherapy treatments that followed! Leevi lost weight, was constantly nauseous, vomited, and his blood counts plummeted leaving him with virtually no immune system. He spent the next few month fighting for his life while his father and i helplessly watched. Leevi is a very strong little boy. He fought his brain cancer head on and WON! Leevi is currently in remission but his battle is far from over. Leevi has to have MRI's performed every 3-4 months due to the aggressive nature of the cancer. Every other scan will be done under general anesthesia and last approximately five hours because his brain and entire spinal column has to be scanned. The other scans will be shorter and done under sedation and will only scan his brain. During Leevis's extensive treatment regimen and hospitalizations the only thing he enjoyed and looked forward to was his wagon rides around the hospital. Of course, Leevi had to wear a mask to protect him from germs but he didn't mind at all because he got to leave his hospital room! His leisurely wagon rides were the only thing that gave Leevi a sense of "normalcy" during the most trying time of his two short years of life! Our family is currently planning a trip to Washington, D.C. to attend the annual CERN Foundations butterfly release to celebrate Leevi and many other children who had to endure brain cancer and its many unpleasant side effects and treatments. Our family will be purchasing a wagon from the Radioflyer company for our trip so that Leevi can be as comfortable as possible and save his energy. Janet Weis Children's Hospital in Danville, Pennsylvania would be a very deserving recipient of the Wagons for Good. The facility treats a large number of patients each year. Some include surgical patients, oncology patients as well as NICU/ICU patients. Thanks you for this amazing opportunity! God Bless.
Leevi's Battle With Brain CancerBy: Brittini  F.