By David Arnold
•
March 12, 2024
“After trying for a child for 3 years, we found out that it was not possible for us naturally, as fate would have it we were asked to adopt Zeke 2 months later. From that moment on Zeke became our world. We got to name him and be there for the birth and took custody when he was a month old. Zeke just turned 4 in November. We knew there was a chance he would be diagnosed with neurofibromatosis type 1 (NF1) and he was at 3 months old. This condition for him has mostly manifested as what is called cafe au lait spots (think lots of large freckles) but can cause tumours anywhere along his nervous system so he is monitored. In November of 2023 he started getting sick; throwing up and lethargic one day and fine the next but it was assumed to be typical sicknesses (colds, flu, etc.) from being in pre-primary. Then on the 24th after a bout of vomiting, he lost consciousness and was rushed to the hospital via EHS. Once there he was found to have an ear infection and they assumed he’d had a febrile seizure, then 6 days later it happened again. This time the ear infection was gone and so the doctor started looking for other causes, finding a CT from March which revealed he had a glioma that we had not been made aware of by anyone. The seizures then happened again that night, so the doctor got to see it from start to finish. At this point I went off work on a stress leave so one of us was always available to be with Zeke or pick him up from school because he couldn’t stay to the end most days, he was exhausted. Our pediatrician became very concerned and contacted the IWK, trying to rush an MRI and promised we’d have one by the end of December no matter what it took. The third time it happened was Dec 5th, when we once again headed to Valley Regional. This time however we were told because nothing was “abnormal” with his breathing, heart rate, blood work, or blood pressure to not come in unless it developed into something abnormal because until the IWK did testing there was nothing they could or would do. In total we spoke to 5 doctors who concern ranged from “this is really serious” to “he’s a kid. kids get sick so don’t worry.” On Dec 20th at Noon, he had his MRI, then at 5:30pm that day his pediatrician called us to bring him back the next morning to be admitted because he needed surgery. Zeke was diagnosed with a diffused brain tumour and hydrocephalus. His fourth ventricle had been completely blocked and the pressure from the fluid was causing his sickness and seizures. On Dec 22nd he had two brain surgeries, one for the fluid on his brain from the hydrocephalus, and one to removed pieces of the tumour to relieve most of the pressure. The problem we faced then is that where his tumour was diffused, they couldn’t cut much of it out without risking brain damage, as It has tentacles burrowing through parts his brain almost like roots of a plant. On January 16th this year he had surgery to have a Port-a-Cath implanted and he started his Chemotherapy on January 17th. Currently the plan is that he will be doing Chemo weekly for 15 months, if it is successful, we will still have to monitor the tumour for the rest of his life to ensure it doesn’t start growing again. With everything that’s been going on I’ve taken a leave from work to take care of him, while my husband remains working Fulltime. “ How YOU can help! There is a Facebook group called Zeke’s Support Squad . His mum can be emailed at c_sweeney@yahoo.com. There is a GoFundMe link www.gofundme.com/f/our-amazing-boy-zeke-needs-your-help Different places tat are accepting donations including Bridgetown Pharmasave, Bridgetown Variety Store, The Perky Loaf, Bee’s Knees General Store and Bakery , Lawrencetown PharmaChoice and aRoma mocha café, DiValerio’s Sweets & Savories, Rockin Rogis, and Sobey’s in Windsor.