Todd was given his diagnosis on Christmas Eve
A seven-year-old boy who had been struggling to learn to read at school was given a devastating diagnosis on Christmas Eve – after a teacher spotted a familiar symptom. Ellen Vance says the only sign she saw that anything was wrong with Todd was a problem with reading, but a teacher had also spotted something else.
Ellen, 52, a mum of three from Dundonald, Northern Ireland, said: “When Todd started primary school, he was a normal young lad with no health issues, except he had a problem with recurring ear infections.
“The first sign of anything being wrong with Todd was when he was getting special reading recovery lessons as he was slightly behind with this area of his education, but as dyslexia runs in our family I just thought that this was the route that Todd would be going down. One afternoon, the Vice Principal came to me and said that she had concerns about Todd as she thought he may be having ‘petit mal’ seizures.”
Petit mal is a type of generalised seizure that causes a brief loss of consciousness, usually lasting less than 15 seconds.
Ellen said: “His teacher had seen this before, so recognised the signs. Todd would indeed drift off into a little world of his own for a short while, just seconds, and then return to his usual self and continue on with what he was doing.
“She mentioned that she could wave her hand in front of his face and there would be no reaction from him, so it wasn’t just a lack of concentration.”
The GP referred the family to hospital, and Todd underwent a series of tests and scans. Todd was initially diagnosed with a cyst, which wasn’t too concerning. Ellen began to worry when the cyst grew, and Todd was referred to a neurosurgeon.
“My fears started to creep in as I thought there are two doctors you never want to meet, a neurosurgeon and a cardiologist, as I knew it was serious then,” she recalls. “10 days before Christmas 2008, the doctor told us that in fact it wasn’t a cyst but a mass on Todd’s brain.
“You can imagine the questions that go through your head. A few days later, on Christmas Eve, our world fell apart, listening to the neurosurgeon say that the mass was in fact a primary brain tumour.”
Todd’s tumour was slow-growing, so the doctors decided the best option was to watch and wait to see whether the tumour itself would voluntarily stop growing.After three months, MRI scans showed that the tumour kept growing.
They decided to operate in January 2010 to get a biopsy of the tumour. “The surgery itself was very risky and we were very worried that Todd would end up with more issues than he had, but we all decided that the tumour was now telling us it was time,” Ellen recalls.
“Todd was so brave during his surgery that lasted for what seemed like forever, and thankfully came out the other side very well indeed. Then one week later we went back to the hospital for the results and as I saw Todd’s consultant walk up the corridor with a nurse by his side I knew there and then it was bad news.
“I knew from experience that a consultant always brings someone with him to deliver bad news, so my heart felt as if it stopped beating. We sat down to listen to the pathology results, and the news was devastating for us as a family, and I knew that our lives would now change forever.”
Later that week the family met Todd’s oncologist, who explained that Todd would undergo 85 weeks of chemotherapy using a combination of two different chemo drugs. Ellen says this was “the scariest time of [their] lives”, and that the treatment was gruelling and took a serious toll on Todd’s body.
“We had to learn very quickly how to deal with all the things the chemo threw at us all,” she said. “It was the hardest thing as a family to watch your beautiful child have to endure all this pain and sickness in order to get better.
“The treatment plan Todd was on meant that he would probably lose his hair, which was the number one thing that he dreaded, as he loved his spiky blonde hair – he was a cool dude. While his hair had just thinned out originally, the dreaded day came when he was getting dressed and spiking his hair and I got a handful of hair as I was putting the gel on.
“I didn’t know where to look or what to say. It wasn’t long before the wee man caught on to what was starting to happening, and he immediately ran and lay on the sofa and cried and cried until there were no tears left.”
If dealing with the diagnosis and the treatment wasn’t hard enough, little Todd would hide behind the sofa when people came to their family home after losing his hair. “He just wouldn’t come to terms with his hair loss,” Ellen said.
“He wouldn’t go out of the house in case someone looked at him, our curtains in the house were not allowed to be opened, he was so self-conscious, he wouldn’t even go to the hospital. He just couldn’t cope at all. It was heartbreaking to see my confident son fall to pieces over the loss of his hair.”
Everything changed when Ellen bought him a bandana from a sports shop one day. ” I brought it home and he put it on, and it was perfect,” Ellen remembers. “It wasn’t itchy on his head and there were no seams digging in.
“He was like a different child. His confidence grew and he saw hair loss in a completely different way. It became more about him and how cool he looked. Everyone was talking about the different bandanas he wore rather than how sick he was.”
Ellen made it her mission to help other children facing hair loss and set up Bandanas for the Brave with her husband Simon. The charity provides free bandanas to children who have lost their hair following cancer treatment with the aim of boosting their confidence.
“What we are trying to do is simply prepare families by having a bandana at the ready,” Ellen said. “So much happens during this time, that it can easily slip parents’ minds, or they might not have the time to go out and buy something for their child as their first thought is to be beside their child and support them. That’s why it means so much for us to help other families.
“One mummy who lost her little girl said to me, ‘You don’t know how important that bandana is to me. I keep it in my handbag and when I’m feeling down, I take it out and it reminds me of her’. That is more than we ever expected.”
Bandanas for the Brave has now supported children at more than 25 hospitals, including The Royal Belfast Hospital for Sick Children, Great Ormond Street Hospital, The Royal Hospital for Children in Glasgow, Leeds General Infirmary, Oxford Children’s Hospital and Royal Manchester Children’s Hospital. The charity has also supported children as far away as Australia and America.
Todd, now 22, still has a tumour but is cancer-free and gets a scan every two years to monitor it. “Todd says himself his tumour rules his life now and there are so many things he cannot do, but thankfully he’s with us, which is the most important thing,” Ellen adds.
“One of the horrible aspects of having cancer and being in and out of hospital for almost two years was that we have met lots of other families that have this terrible disease to deal with also.
“Todd is one of the bravest boys I know and has been through so much the last number of years dealing with not only the treatment that he needed for his brain tumour but the death of losing people he loved due to cancer. Todd has grown up before he should have emotionally, as he has lost two little friends from the hospital.
“I think it shows what a strong young man he is, as most kids would never have to deal with death at this age, but he has, and it’s made him the fantastic young man that he is today.”
Todd is now a trustee for Bandanas for the Brave and is helping the charity to continue to grow and support other families.