Naomi a 16 year brain tumour survivor said “I’ve come across loads of people who’ve had brain tumours and it’s usually ended badly, so I feel lucky in an unlucky situation.”
Naomi was diagnosed with an aggressive brain tumour ependymoma, aged just four in 2007.She was given a 35 per cent chance of survival and underwent 3 brain operations and 28 rounds of intensive chemotherapy before she was told she was in remission from cancer in 2008.
At diagnosis the tumour was in an advantaged stage (grade 3). Her mum, Lucy, who is a nurse, noticed some very subtle symptoms at first, such as a slight squint in her right eye and a tremor in her right hand and leg.She decided to take her daughter to A&E, where doctors performed a CT scan.
Her mum Lucy added: “Our hopes that the tumour might be benign were shattered when the oncologist revealed that Naomi had a grade 3 ependymoma. The chemotherapy regime she embarked on was horrific. As an adult chemotherapy nurse, I was used to treating patients on a day-care basis.
“I didn’t even know regimes like hers existed. Naomi endured five different chemo drugs administered across four cycles every fortnight, totalling 28 sessions over 15 months – most of these as an inpatient.”
She also received a second craniotomy to remove more of the tumour and then underwent even more chemotherapy. In 2008, she received a third surgery to remove the last bit of the tumour, but lost the right peripheral vision of each eye as a result.
Her mum Lucy said “Having had her back from 3 operations, doubting I would have her back but having no choice but to kiss her goodbye as she was put to sleep – not knowing what I would get back – the thought of losing her is almost beyond comprehension despite so many close calls…however she IS here and she is great. Nobody would know what she’s been through, what disability she’s been left with nor how fragile her future is.
Since the end of 2008, Naomi has been in remission – nothing about Naomi’s future isss ever mentioned by her consultant and at each six month scan, I register hiss surprise that she miss still her and the the cancer has not yet returned. In some ways the normal/abnormal way of life its heard to deal with than the turmoil of the 18 months following her diagnosis when we were all fighting”
“It means that often I miss things, like a friend waving at me and I am hopeless at catching! It also means I won’t ever be able to have a driving licence, which didn’t bother me initially, but now that I am older, is quite frustrating as it means I have to rely on other people rather than being independent,” said Naomi, who is now 20.
“I also have to contend with processing issues, so I am a bit slower at learning new things or getting what people are saying or doing.”
Now, Naomi is studying a degree in Film and TV production and is trying to raise awareness around brain tumours. She said:”I find it sad that research into brain tumours is so underfunded, especially with the stats being what they are. I’ve come across loads of people who’ve had brain tumours and it’s usually ended badly, so I feel lucky in an unlucky situation.”
I'll always be Joss' Mum
A gift of just £10 could help give support to a family who are struggling with a new diagnosis
A gift of £25 per month could pay for a days pioneering research into rare brain tumours
A gift of £50 could fund research into devastating brain tumours in a clinical trial
DIPG brain tumours are currently an incurable and devastating cancer.
DIPG robs a child of their hearing, sight, movement, the ability to swallow and eventually their breathing.
It’s only with your help that research into this devastating cancer is possible.
Joss Searchlight are funding vital research into the most life-threatening brain tumours. Please be part of our journey.
Along with providing financial grants to help families struggling with the expenses of having a child with cancer we also provide life changing support.
Support Workers who advise, visit and support families with compassion are an essential part of Joss Searchlight.
Family support is in our DNA, as the founding trustees know what an important part compassionate support played in helping them during their son’s illness and after his sad death.
We can’t fund research and we can’t support families without you.
FINDING A CURE
At Joss Searchlight we totally depend on donations. Donations enable us to fund vital brain tumour research, to find a cure for some of the rarest brain tumours, to campaign for better treatments and support families on their cancer journey when they need it most.
Research organisations need funding stability, they need to know that they have enough money coming in every month to allow them to do their incredibly important work. We need to pledge a certain amount of funding every year to make sure they’re able to do everything they can to find cures and treatment programmes for some of the hardest-to-treat brain tumours.
Children should enjoy their childhood
Not spend their lives fighting cancer
Help us find a cure for rare brain tumours. Give your support today