THE BRAIN TUMOUR CHARITY

Finding out my son, Chad, now 18, had a brain tumour was one of the worst moments of my life. I had to leave the room as I just couldn’t believe what I was hearing. My young nephew had tragically died 18 months earlier from a rare brain tumour and my daughter, Tilly, had also been diagnosed with one five years before. I couldn’t stop thinking how I’d have to break the news to my parents that another grandchild had a brain tumour, and wondered how this could be happening to our family again.

My family’s battle with brain cancer began in October 2007, when Tilly, now 30, started complaining of regular headaches and a sore neck. I advised her to have an eye test and see her GP, which she did, but neither picked up on anything serious. Then in December, we went to pick Tilly up from university for Christmas and I knew something wasn’t right. She had lost nearly two stone and looked drawn and pale. 

Over the next few weeks, Tilly was vomiting fairly often and she would be unable to get out of bed on some days as her headaches were so excruciating. We were back and forth to the GP and hospital but were unable to get a diagnosis, although she couldn’t walk on her own or lift her head up by this point.

In February, while waiting for an appointment to come through for an MRI scan at the hospital, Tilly started to lose sensation down her arms. We took her to A&E, where they ordered a scan which revealed that she had a huge tumour mass and cyst in her brain. Our world just fell apart.

Tilly was immediately transferred to the Royal Free Hospital in London, where she was put on steroids to reduce the swelling in her brain. She was then given a ten-hour biopsy, which showed she had a grade 2 pilocytic astrocytoma – a slow-growing tumour on her brainstem. Because of where it was, they were unable to remove it fully as it would be too dangerous, so she was sent home after five days to recover. However, 18 months later, she needed a second operation to reduce the tumour further as an MRI scan showed it had grown too big, too quickly.

Thankfully, Tilly recovered well and returned to university just weeks after the surgery and seemed to pick up where she had left off – eventually qualifying as a nurse and getting a job working on a cystic fibrosis unit at a hospital. Life seemed to go back more or less to normal.

However, at the end of 2011, to everyone’s shock my nephew was also diagnosed with a brain tumour. He was treated for it but tragically died a year later, at only nine years old.

Less than a year later, Chad, then 11, started saying he felt sick all the time. He has always been a fussy eater so at first we thought it was just his body’s way of saying it needed more nutrients. We tried to sort out his eating and he seemed to pick up for a little while. However, by April, he had started getting headaches that left him in extreme pain.

We took him to A&E, where I explained what had happened with Tilly and my concerns for Chad. He was given an MRI scan, which showed that he also had a huge mass on his brain. We were blue-lighted to Addenbrooke’s Hospital, where we discovered on Chad’s 12th birthday that he had a grade 4 medulloblastoma; he was operated on more or less at once.

Although the surgery was successful in removing the tumour, Chad then developed posterior fossa syndrome, which left him unable to talk or walk. He dribbled and made a horrible screaming noise constantly for eight weeks, which was so hard to bear. There is no treatment for the syndrome, but some of the symptoms went away after eight weeks, though Chad then had to begin the long, hard task of learning to walk and talk again.

Chad was also given a 30-day daily course of radiotherapy, which was then followed by a year of chemotherapy. It took a massive toll on his body. He was an inpatient for five months as he was so ill throughout his treatment. He developed typhlitis (an inflammation of part of the large intestine), which ulcerated his bowel, and had to have a gastrostomy put into his tummy to feed him because he had lost so much weight. He also lost his high-pitch hearing, developed problems with his thyroid, and developed memory and processing problems – all of which still affect him today. Chad also began displaying many of the characteristics that are common in someone with autism. He has developed very high iron levels as they think he is storing it in his liver, and is still sick every day, six years after treatment. 

Although Chad’s cancer is now in remission, he is still living with the horrendous side effects of his treatment. He is now at college, but he requires a lot of care and support and is more like an 11-year-old than an 18-year-old. This is why I am so supportive of the research that The Brain Tumour Charity funds into new treatments for brain tumours. I have seen first-hand the consequences of the harsh treatments currently available and I need to believe that there is a better way to treat our children – we just haven’t found it yet.

Even though Tilly is doing so well – she copes really well with the weakness down her left side, which is the only current symptom of her illness/treatment – she is living with the knowledge that she was only ever given five years to live. Until they can find a cure for her type of tumour, it’s like she’s living with a time bomb in her head. Eventually, she will need to have another operation to try to shrink the tumour on her brainstem, and is likely to need a shunt put in to deal with the drainage problem she has, so we are always seeking new treatments.

Things are changing all the time but more needs to be done for brain tumour survivors, and treatments need to be much kinder. Children shouldn’t be left with the life-changing side effects hanging over their heads after everything they’ve been through, and it’s only by funding this vital research that things will ever change.

Total raised: £100,518

The Brain Tumour Charity funds pioneering research, raises awareness and provides support for estimated 102,000 children and adults in the UK currently living with a brain tumour and the 32 people each day diagnosed with one. The money raised in the Candis Big Give will be invested into research into brain tumours, the biggest cancer killer of children and adults under 40. The aim is to find and promote new research ideas and types of research to revolutionise the understanding of brain tumours, make treatments available more quickly and improve clinical outcomes.

thebraintumourcharity.org