My story starts towards the end of 2019, when an unsuspecting MRI scan of my head, reported a cerebella Hemangioblastoma. I was referred to Queens to meet with a specialist Neurosurgeon; where further scans confirmed faster (than expected) growth of the Hemangioblastoma, as well as several kidney cysts and a Pancreatic Neuroendocrine Tumour (NET) for short. After neurosurgery, and “in the unlikely event” I should have VHL, I was signposted to GOSH for further testing, this took a very long time, more so because of a Worldwide pandemic. I hadn’t put much thought into having children, but when I felt like I had lost all control over my life and its direction, I suddenly wanted nothing more than that. It had been just over a year since my referral for testing & I still hadn’t heard anything. I couldn’t wait any longer. We were having a baby, due in September 2021. In August of that year I was finally tested. I had the mutated VHL gene. I can’t remember how it felt to finally have that confirmation, a mixture of everything I think, but mostly I was now terrified that I’d pass it onto my unborn baby boy. Following that diagnosis, my local hospital wanted to complete an MRI scan of my spine and brain, to determine the birthing plan. I went into labour 2 weeks earlier than planned & was taken to the Hospital. At this time I would learn of a further two tumours on my spine. I was now being prepped for an emergency caesarean birth under general anaesthetic, complete with blood transfusion! My baby’s umbilical cord was tested for the mutated gene. 12 weeks later I got the news I had hoped and prayed for. It didn’t pass on. He didn’t inherit it. I’ll remember that day forever. Six years into my diagnosis, I have had lots and lots of MRI’s, a few rounds of laser eye surgeries to treat tumours, and most recently the removal of an endolymphatic sac tumour from my right ear. They continue to monitor the spine and pancreas and I am due to return on the 30th of May for results following my most recent scans. 🤞🏼
