Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
Two-year-old Finlay was finally diagnosed with a high-grade brain tumour after his mother repeatedly pestered health professionals saying she knew something was wrong with her son. He underwent surgery and is currently on chemotherapy. Finlay is doing well and his parents are trying to stay positive although they have been told that just 20% of patients survive beyond five years.
“I need to stay positive for Finlay, he is not a statistic, he is my son. Finlay is the most loving little boy and a true inspiration to us and everyone who meets him. He is our little soldier and continues to amaze us every day with his bravery and strength. It’s easy to sit back and think something like this won’t happen to you but it does, I am living proof of that, it has happened to our little boy. For this reason we all really do need to raise more funds and awareness to help fund the fight against brain tumours for all those amazing people, like Finlay, who are fighting. Hopefully, one day we will find a cure.”
Finlay’s mum Ellys tells his story:
Finlay was born in January 2015, a brother for Imogen who was three at the time. My husband Anthony is an infantry soldier and his regiment, 4 Rifles, is based in Aldershot so we were living not far away in Reading.
I began to have concerns about Finlay when he didn’t seem to be hitting the normal developmental milestones as Imogen had. He was slow to walk and talk and I just felt things weren’t right. We had numerous visits to the doctor, a paediatrician and then hospital over several months and I felt as if I was being fobbed off as doctor after doctor told me there was nothing to worry about. Now I thank God for my mother’s intuition which told me something was seriously wrong and made me determined to continue to make a nuisance of myself. When Finlay was eventually diagnosed with a brain tumour I was relieved that, finally, we had been listened to, but horrified at what might lay ahead.
It was February 2017 and Anthony had been flown home by the British Army, leaving his regiment in Iraq where they were training Iraqi forces for an upcoming assault to reclaim the city of Mosul. We had been in regular contact by phone during his deployment. I had voiced my concerns about Finlay on many occasions; he was walking with a strange wide-legged gait, his hand would shake when he tried to drink from a cup, he would get frustrated and angry when he couldn’t do something. His condition was deteriorating but I felt as if none of the health professionals believed me. Anthony tried to reassure me that everything was alright but now, here we were, being told that Finlay had a brain tumour.
We had been rushed to the John Radcliffe Hospital in Oxford where Finlay underwent surgery on 20th February 2017. The 12 hours he was in theatre felt like a lifetime to us. It was five days until the tests confirmed the surgeon’s suspicion that the tumour was cancerous and, even worse, that only 20% of patients with this type of tumour lived beyond five years. We were in complete shock and I cried until I had no tears left. I tried to hang on to some hope and found consolation in the fact that it looked as if the tumour had started off low-grade before changing over time.
The tumour, a choroid plexus carcinoma was successfully removed during surgery. Finlay’s post-op chemotherapy was delayed as he contracted E. coli meningitis while in hospital. He was finally allowed home at the end of March and started the follow-up treatment on 7th April. His six months of chemo, which started in Oxford and is now taking place at the Royal Victoria Infirmary, Newcastle, finishes in October. His scans so far have been clear which is the best news possible and he will continue to have follow up scans every three months.
I need to stay positive for Finlay, he is not a statistic, he is my son and, for now at least, every single day he is getting better. He has come such a long way compared to how he was before the tumour was removed and, despite everything, he always has a huge smile on his face. Finlay is the most loving little boy and a true inspiration to us and everyone who meets him. He is our little soldier and continues to amaze us every day with his bravery and strength.
It’s easy to sit back and think something like this won’t happen to you but it does, I am living proof of that, it has happened to our little boy. For this reason we all really do need to raise more funds and awareness to help fund the fight against brain tumours for all those amazing people, like Finlay, who are fighting. Hopefully, one day we will find a cure.
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
If you have been inspired by Finlay’s story and would like to make a donation to Brain Tumour Research please go to https://www.justgiving.com/fundraising/Ellys-Niles or leave a gift in your will via https://www.braintumourresearch.org/legacy
Together we will find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.