Survivor of Germinoma, Cavernoma, Meningioma

I am Jesse’s sister writing this on behalf of him and everything he has been through because I strongly feel Jesse’s story needs to be told and heard. Jesse consented for his story to be shared online.

Jesse first became ill in the early summer of 1993 when he was 12 years old (and I was 14 then). His main symptom then was that he had gone completely off his food, he would barely eat anything, and was very underweight and malnourished. His personality had also changed from previously being confident, sharp, and sporty to very withdrawn and lethargic. 

Our local hospital assessed him and diagnosed him with anorexia nervosa. He underwent harsh psychiatric treatment, being confined to a dark solitary room with nothing to do. If he consumed any food, then he was ‘rewarded’ with open curtains and something to do, like watching TV for a short period of time. The whole family had sessions with his psychologist and psychiatrist to try to help unpick his supposed psychological issues. All the while, his health and well-being got no better. Eventually, my parents requested he come out, and after other regional hospitals had no better answers, he was eventually referred to Great Ormand Street Hospital (GOSH), London. At this point his eyesight was deteriorating.

At GOSH, he was correctly diagnosed with a Germinoma, a rare cancer of the brain, which had begun in the hypothalamus, which controls appetite. Jesse had to be fed with a gastro-nasal tube in order to be able to withstand the radiotherapy and other hospital treatments and procedures he was going to need.

As GOSH is in London, and our family lives in a very remote village in north Devon, a few hundred miles west of London, my parents took turns to accompany my brother to London each week for his treatments, which went on for months. Meanwhile, I was doing my General Certificate of Secondary Education (GCSEs).

My brother was cleared of the germinoma by the end of his treatment, but his pituitary gland was destroyed, and his optic nerves were badly damaged. Ever since then, he has been registered as disabled due to his visual impairments. Moreover, he has had to take artificial hormones to enable him to grow, mature, and help keep his whole endocrine system ticking, something that our bodies usually do an amazing job of doing for us, but when it has to be translated into daily measured pills, injections and patches, etc. is another story. The sharp, sparky mind my brother had before he ever got ill never really recovered either, as he struggles with short-term memory problems due to the damage.

However, Jesse did return to school despite having missed the best part of two years of education. He achieved some GCSEs and later attended the national Royal National Institute for the Blind FE college in Loughborough. After living in some supported accommodation set-ups in north Devon, he eventually settled in Exeter, where he lives in his own flat, with help from our parents to help keep on top of day-to-day things. With support, he found employment, firstly at a social enterprise and then at Wilko.

Over his adult years, owing to his condition, his medication, and other factors such as hydration issues, resulting in, at times, some scary incidences of him suffering from seizures, a series of ‘petit mal’ fits building up to a grand mal and collapsing, resulting in the ambulance being called. Thankfully, he always made a full recovery after these fits, although they were very distressing to witness.

In around 2006-2007, a routine MRI scan revealed a cerebral cavernoma, a cluster of abnormal blood vessels (an aneurysm) in an inaccessible area of the brain, undoubtedly a consequence of the damage caused by the germinoma and radiotherapy. Jesse was referred to the Sheffield Gamma Knife Centre in 2007, where cutting-edge Gamma Knife treatment was carried out in an attempt to treat the cavernoma. However, the MRI scans he’s had since then show the cavernoma is still there.

In February 2014, over the course of a few weeks, Jesse became increasingly ill, behaving like someone with advanced-stage dementia. My parents had to bring him to stay at their house while trying to get a hospital referral, as it was not safe to leave him alone. He got progressively worse until one day, my Dad just took him to Barnstaple A&E where he was given a scan and then taken by ambulance to Frenchay Hospital in Bristol with my Mum accompanying him. 

I lived in London at the time, and I remember jumping in the car and driving to Frenchay to meet Mum and Jesse there at around midnight. The scan images showed a meningioma tumour, literally the size of an orange, in the frontal cortex region. An 8-hour neurosurgery operation was scheduled for 9 a.m. the following morning to have the meningioma removed and tested for malignancy. Although an incredibly tense and emotionally draining time, thankfully, the operation was successful, and the cells were found to be atypical, not malignant. However, whereas usually, with operations to remove tumours the surgeons remove some of the surrounding tissue to make the best effort to not incur a re-growth, this is not possible in the brain.

Jesse’s MRI scan the following year showed no signs of regrowth. As a result of the COVID pandemic and administration difficulties, Jesse is currently very overdue for an MRI scan.

This year, 2023, Jesse has had an enormous dental ordeal, undoubtedly yet another adverse long-term consequence of the germinoma and subsequent treatments and medications, etc. Basically, ALL of his teeth were eroding away, all of them at the same time! After a lot of dental consultations, it was agreed he would have a full mouth of crowns, but not available on the NHS. The teeth you see in the smile in the photo are his temporary crowns before the real ones were done. I’ve actually yet to hear the final cost, but the quote I heard was probably, on top of everything else, was maybe what tipped me over the edge and got me out doing the Run 100K in September in aid of Great Ormand Street …I just felt a deep need to finally do something to help me make sense of everything that has happened with Jesse.

Sometimes, especially now that I’m experiencing being a parent myself, I feel pained and robbed of the brother I could have had, had Jesse’s correct diagnosis been made earlier so he could have been treated more easily and had less ongoing health and well-being issues to contend with throughout his adult life. 

I do feel pained at this, and sometimes I want to tell my friends whose siblings are well and thriving with their own families how lucky I think they all are! But then I wake myself up to the fact that I’m the lucky one, and any grievances or pity I may feel on myself for what happened to Jesse pale into absolute insignificance compared to what he has had to endure and still does endure. And not only that, but really, how stoically and heroically he has handled and handles what life has thrown at him and still throws at him. And my parents what they have had to endure and still endure.. and then we all remember we all still have a lot in life to be grateful for.. Things could have been worse yet… but, I just felt the need to share this story here..

Wishing whoever reads this well. Thank you for taking the time to read.

---

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.