In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
“The most poignant moment on our wedding day was when Tom walked Kelli down the aisle. It was his idea: he wasn’t going to be around to give her away at her own wedding but this was something he could do now. My only regret is that, as the bride, I wasn’t there to see it! We do have some wonderful photos and videos though. We changed Kelli’s surname on that day as we wanted to be together as a proper family although we had no idea just how short-lived that would be.”
Tom’s wife Joely tells his story…
When I met Tom I was a young single mum, studying to provide the best future I could for myself and my daughter Kelli. We found each other on a dating site. I was drawn to his intelligence, we seemed to have a lot in common and we made each other laugh. We were in touch for a couple of weeks before we met up and for our first date we played mini golf and went to Nando’s for a meal. Tom had really wanted to take me somewhere far more flash but I said no and I am so pleased we opted for something that was fun, as it meant we could relax and just be ourselves.
It was June 2011. Kelli was two and she and Tom took to each other instantly. I introduced them after a few weeks and we had a meal together at Tom’s house – a Chinese takeaway, he couldn’t cook! – and it was a lovely occasion.
I was excited and hopeful for the future. When she was just four months old Kelli was taken into hospital with stomach pains and was later diagnosed with neuroblastoma, a tumour of the sympathetic nervous system which affects just under 100 children a year in the UK. Kelli had a central line fitted in order to deliver chemotherapy drugs. I was 21 and terrified.
At the time I was on maternity leave and we would go into hospital from Monday to Friday each week for up to eight hours at a time. Six months of treatment shrank the tumour enough for Kelli to undergo surgery. It was a massive relief when a scan in early 2011 showed she was in remission.
Tom knew about Kelli from the start. He was strong and supportive, helping me when I suffered from time to time with bouts of anxiety. Just months into our relationship, we discovered that Kelli had three more tumours, although they were not as aggressive as the previous one and the decision was made to watch and wait to see what happened.
It would have been easy for Tom to walk away from us and I wouldn’t have blamed him, but instead he gave me the most incredible support. At the time, options in the UK were extremely limited and there were no protocols for treatment after a relapse. Like many other families, we decided to raise funds through a neuroblastoma charity in case we needed to seek help abroad.
We thought of it as a back-up plan: if we were ever told there was nothing more that could be done for Kelli in the UK we would have a contingency plan. So, three months after Tom and I first met we set about raising £500,000 and, to start with, it was very slow going as we held car boot sales and the like. Tom took over things on the charity front and managed to make it fly. We were featured in the Daily Mirror and donations came in from around the world. It meant so much that people we hadn’t even met wanted to help, it was fantastic.
We were a year into our fundraising when Tom was taken ill. It was October 2012 and he was staying with his sister when, completely out of the blue, he had a seizure. He was taken to University Hospital Coventry & Warwickshire and later transferred to Queen Elizabeth Hospital in Birmingham. Tom was diagnosed with a brain tumour and underwent surgery. At first we were told that the operation had been successful in removing 80% of the tumour, a grade two astrocytoma, but it later became apparent that much of it remained and was growing in the frontal lobe which controls speech and movement.
After the shock of the diagnosis and the trauma of surgery, Tom worked hard to get back on his feet. He recovered really well and it makes me laugh to remember how he stood in front of the mirror desperately trying to raise his left eyebrow – he was frustrated that he couldn’t do it but, for some reason, it was massively important to him. Of course he had been really lucky, as so many other things could have gone wrong.
In June 2013 Tom proposed and we moved in together. Although we knew the tumour was very likely to grow, we didn’t know when but had a prognosis of around eight years in our minds. Despite this uncertainty, there was one thing I was completely sure of: I was besotted with Tom and wanted to spend as much time with him as possible. He had done so much for me and Kelli and now it was time for me to be there for him. Tom treated Kelli as if she were his own. The wedding proposal came when he took me, Kelli and my mum away to Manchester for the weekend. He presented me with a ring and there was one for Kelli too – she responded by saying “that means you’re going to be my dad forever.” It was the first time she had called him “dad.”
It was the first time there had been a father figure in Kelli’s life. Tom was fantastic with her. We went into things with our eyes open and Kelli knew that Tom wouldn’t be around forever but I felt, by having him in her life for however long it might be, she had so much more to gain than to lose.
Tom had always said that real men do cry and it was happy things like this that made him emotional. He would get a bit teary but never in a self-pitying way and, because of his illness, special moments meant so much to him.
We didn’t hide things from Kelli and had always been as open as we could about the “nasty lump” in her tummy. Now her dad had a naughty lump too, it was in his head and the doctors were going to do all they could to help him although it might not be possible for them to make it go away completely.
Then Tom started to have frequent, albeit minor, seizures. They made him extremely tired and sometimes he would lose his speech, for up to hours at a time. We had already been told that radiotherapy would be an option if the tumour start to grow.
In December we went on a trip to Disney in Florida which was granted to Kelli by the charity Make-A-Wish. We had a wonderful time but within days of coming home Tom collapsed with a grand mal seizure. The tumour had grown drastically. Tom’s wish was to delay treatment until after our wedding and honeymoon.
We got married in April 2014. The most poignant moment was when Tom walked Kelli down the aisle. It was his idea: he wasn’t going to be around to give her away at her own wedding but this was something he could do now. It was such a wonderful idea and my only regret is that, as the bride, I wasn’t there to see it! We do have some wonderful photos and videos though.
We changed Kelli’s surname to Attwater on the day we got married. We wanted to be together as a proper family although we had no idea just how short-lived that would be. Kelli stayed with my mum while Tom and I enjoyed a few sun-baked days in Cyprus. I look back at the photos of the wedding and our honeymoon and it is so good to see that Tom, although poorly, was happy and relaxed. He knew how important it was to enjoy every moment.
Tom had an ECG when we returned from our honeymoon, during the 30 minute scan he had 30 minor seizures. He started radiotherapy as I tried my best to finish my last three university assignments. We would travel to hospital from Monday to Friday for six weeks. Having been through a similar thing with Kelli, the routine was familiar to me yet different at the same time. During the first few weeks, Tom reacted quite well to the treatment but he became more and more tired and then had another grand mal seizure. I was at home with him when it happened and fortunately I was able to stop him hurting himself. Kelli was there too and it was the first time she had witnessed Tom having a seizure. She had seen videos of people having seizures and I had explained to her what we had to do in case I wasn’t there when it happened We had always known that the radiotherapy could cause the tumour to swell at first and, although it didn’t shrink the tumour as we hoped, it did stop it from growing for around a year.
Tom had grown up in a little village called Pattingham in south Staffordshire and we moved there from Sutton Coldfield in July 2014, a month after he finished his radiotherapy. Tom was a financial advisor and continued to work, when the fatigue allowed, mostly from home although it got to the stage where he needed help as he moved around the house.
On Kelli’s first day at the village school on 2nd September 2014 that I discovered I was pregnant with Tom’s baby. We had been trying for some time and had no idea if it would be possible after all the treatment. I was so excited, I woke Tom to tell him the news and he grabbed me in a big hug and we cried in each other’s arms.
We decided to tell Kelli straight away. Having a baby brother or sister was something she had dreamed of and, like us, she was over the moon. We opted to know the sex of the baby just in case anything happened to Tom before it was born. He had always hoped for a son and our joy was complete when we discovered we were having a boy.
Fletcher was born on 22nd May 2015. Tom’s condition was deteriorating and there had been talks about hospital admittance. We knew we were moving to a different phase as his tiredness became more acute and he struggled to write and speak. Despite all this, he was at my side throughout the labour. We both cried as Tom held his baby son and told me how happy he was. It is hard to put into words but it was a magical moment and something we had both wanted so much. I felt honoured that Tom had chosen me and that I was able to help him achieve his dream of being a dad.
Just three weeks after Fletcher was born Tom was being violently sick. It got to the point where I could no longer help him get out of bed and he was struggling to swallow and to take his medication. He was admitted to hospital and a scan showed the tumour had spread to the other side of his brain. There was so much pressure on his brain, he was very confused and prescribed high dose steroids in an attempt to reduce the swelling. Tom went back into surgery to debulk the tumour which was now classified as grade four. The operation went well and I felt that Tom had come back to us for a while. He was discharged but his condition went rapidly downhill, and he was back in hospital in just a few days.
Although it was touch and go, Tom’s condition stabilised. The prognosis was stark: Tom had less than three months left. Although he understood he was terminal he didn’t want to know how long he had. Tom wanted to come home and, although I knew as his carer as well as his wife and with a young child and a new-born baby, things would be very difficult, we made arrangements for this to happen.
We created a bedroom downstairs and moved Tom’s bed in front of the patio doors so he could look into the garden and watch Kelli on the trampoline. It was really special for him to be able to do that and, when he could, he would put his arm around the children although it took all his strength as they lay on the bed with him.
Tom died on 29th September 2015. My mum, who had been having treatment for thyroid cancer, stayed with me at first but had to leave to be with her own mum who was also ill. That summer had been the worst of times: my daughter, my mum and Tom, the love of my life, had all been affected by cancer. The day after Tom’s funeral my nan died.
There were some very, very dark times. Although it was the last thing I felt like doing, I had to rouse myself out of bed each day to feed and change the baby, give Kelli her breakfast and get her off to school. To look after my kids, I had to look after myself. The only way to cope was to find structure and routine. Kelli and Fletcher were my saviours and, more recently, I have turned to fitness and exercise as a way to help me deal with my grief.
It is important to me to do what I think would make Tom proud. In June 2016 I went back to Birmingham City University for a post-grad course in psychology and I am hoping to make my career in educational psychology and, if all goes well, I might look towards doing a doctorate. During Tom’s final weeks, I spoke to him about what my future might look like. He was only able to nod in agreement but I could see from his eyes that he thought it was a good idea. Now it is so important for me to see it through.
Tom was adamant he would do all he could to look after us in the future and the fund for Kelli hit its £500,000 target nine months before he died. The money is held in trust and I am hoping that if the day comes when I can be sure Kelli won’t need it, it can be invested into research in the battle against cancer.
It is shocking to learn that 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.
Tom was just 32 when he died and he had so much more to give. I am a widow at 29 and will never be the same person again.