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.
Here her mother, Lucy, tells the story of Naomi’s fight for life…
In April 2007, Naomi was growing up to be a bright, young girl, full of personality; a little chatterbox, with a love for all things pink, purple and heart-shaped. At four and a half, she appeared to be developing well in all areas of her young life, and was looking forward to starting primary school later that year.
One morning in May 2007, as Naomi ate breakfast, I noticed a slight squint in her right eye and the briefest of tremors in her right hand. I processed the possibilities, and as her baby sister had already undergone squint surgery, decided to book Naomi in at the opticians. I also made a doctor’s appointment as an additional precaution.
Later that week the optician confirmed a squint, but nothing else was detected behind the eye. Naomi was prescribed glasses and we continued as normal, awaiting the GP appointment. Naomi displayed no further symptoms until the weekend when, as Naomi was lying on my bed, I asked her to lift her right leg. I noticed a tremor and decided to take her to A&E to find out what was wrong. The possibility of a brain tumour had crossed my mind but I had dismissed it because she wasn’t displaying any other symptoms.
I took Naomi to my place of work, the Friarage Hospital in Northallerton. The staff in A&E were initially reluctant to progress any investigation because Naomi looked well, but they humoured me and requested that a paediatric registrar attend. As Naomi handed her a plastic play cup of tea, we both saw her right arm shake slightly. The paediatrician made a decision to send her for a CT scan; a decision I will always be grateful for as it undoubtedly saved her life. After the scan, we were directed to the children’s ward, and I noticed the A&E staff watching us leave. I soon realised why.
I was advised by the doctors that I might want my husband to attend. My mother and younger daughter were already out in the children’s outdoor area with Naomi. I remember watching them play as we were told every parent’s worst nightmare: Naomi had a massive brain tumour.
In that short space of time our whole world had turned upside down, but we were mercifully shrouded in the protective cotton wool of shock. I remember watching Naomi sit calmly and happily, watching a magician on the children’s ward, whilst tears streamed down my face. She was oblivious to the shattering news we’d just heard. Naomi’s hospital paediatrician, Dr Damman, sent us to Leeds General Hospital where there was a brilliant paediatric neurosurgeon, Mr Paul Chumas, for an operation to remove as much of the brain tumour as possible.
An ambulance rushed Naomi and me to Leeds where I videoed her merrily singing ‘Twinkle Twinkle Little Star’ and wondered whether this would be the last time we would see her alive. Naomi was taken into surgery straight away for an overnight 13-hour operation. After what was the longest night of our lives, Naomi came around from the operation. They’d managed to remove most of the huge 10cm x 10cm tumour.
We were told very little at this point whilst the tumour was sent to be biopsied, apart from that we would be discharged in a few days. I found this quite shocking, and in desperation I contacted Dr Damman to ask if we could come to his ward over the Bank Holiday weekend until our return to Leeds, to which he immediately agreed.
Back in Leeds, our hopes that the tumour might be benign were shattered when the oncologist revealed that Naomi had a grade III Ependymoma brain tumour. The chemotherapy regime she embarked on was horrific. As an adult chemotherapy nurse, I was used to treating patients on a day case basis. I didn’t even know regimens 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.
In September 2007, Naomi made it to her first day of primary school, wearing a little red bandana to match her new uniform and then went back to hospital in the afternoon. In October, a second operation took away more of the tumour and then Naomi continued with her chemotherapy.
Chemo visits to St James’s Hospital in Leeds were interspersed with admissions due to raised temperature, and then around Easter 2008, a caught Hickman Line allowed an infection to set in and for the first time Naomi knew pain. When she recovered from the infection, she underwent her third and final operation which took away the last bit of tumour and a ‘clean’ margin of her brain which meant she also lost the right peripheral vision for each eye.
Chemotherapy and the strains of living on a busy ward, 50 miles away from the rest of our family, finally came to an end in September 2008. Naomi only has happy memories of the times we spent at hospital, which I put down to her character and some of the playroom and nursing staff. It also showed I’d done my job. As her parent, I had to deal with any problems and intervene on occasions because of the way things were dealt with at the hospital, or not dealt with. It was extremely unexpected and stressful, and not what I wanted to do. I was very much walking a tightrope trying to protect Naomi.
Throughout her course of treatment and recovery, I was extremely thankful Naomi got to live a relatively normal life. We went on holiday as family to a variety of different places with the support of some great charities.
It was around April 2008 when I finally decided to try and do something to raise money to help research into brain tumours. Like most people, and despite my knowledge as an oncology nurse, I was completely unaware of the unenviable top spot held by brain tumours in relation to child death. I thought about our experience of dealing with brain tumours as a family; how little information we’d received; how treatment had only marginally advanced; how grim prognosis was.
Naomi’s Fight for Life Fund was launched to a fanfare of visits to the ward by local TV, and interviews with local radio to help spread the word about fundraising, the appalling statistics and lack of funding. It was a difficult decision to ‘use’ Naomi in this public way, but I knew it would be helping other people. If Naomi gets to be a teenager and rages at me, well frankly I’ll just be grateful she’s got to that age. That’s the reality.
We’ve raised more than £47,000 to support research into brain tumours to date and so far, Naomi is very happy with her involvement. As she’s grown older, we have gently altered the focus so now she is more of a figurehead then a victim; more of an inspiration than a sob story.
The risk of recurrence is something that is scary, but Naomi has continued to thrive in life and at school. I have insisted on regular MRI scans which resulted in a speck being picked up in 2012. Fortunately, it hasn’t changed or grown since, so we have cautious hope. The fear is something we have to live with, and, as Naomi’s level of understanding grows, that she has to live with too. But she is living. And whilst ‘normal’ people don’t know how we manage to cope, I know that relatively speaking, we are so lucky.
Throughout this whole experience my daughter’s courage has shone through. She’s been an inspiration to us all and although I know there is still a long way to go before we’re rid of the fear of this terrible illness, Naomi’s fight for life is stronger than ever.