Within a few seconds of examining her, the paediatrician spotted a lump in my daughter Abbie’s stomach.
‘It looks like a tumour,’ the doctor said.
At the time, it didn’t fully register with my wife Liz and I. ‘Children don’t get cancer and certainly not our child’, we thought.
Our little girl was just 19 months old at the time – and this was around December 2002. What followed was an agonising battle that would cruelly cut our daughter’s life short.
When she first started feeling ill around October of that same year, it was nothing significant.
She was a bit under the weather at times and had a sort of ‘simmering temperature’, as we called it. We’d give her a dose of Calpol and she’d be straight back to normal.
But when we took her to the local clinic, they noticed that she’d lost a bit of weight. Alarm bells started ringing.
After seeing a GP, then specialist paediatrician, Abbie got her diagnosis. She was sent for a biopsy and during the procedure, they found she was bleeding into the tumour, so they removed it then and there, along with her left kidney and adrenal gland. We were just relieved because the big cancerous growth was no longer there.
She spent several days in intensive care, then she was released. On Christmas Eve, she was given her first dose of chemotherapy drugs.
We got the results of the biopsy back within a matter of weeks. It was worse than we were expecting.
She had adrenal neuroblastoma and was diagnosed with stage 1 cancer. Doctors explained that neuroblastoma was bad but the cancer being stage 1 was the best type of bad, so we were hopeful.
At the time, Liz and I had no idea what this mystery disease was that our daughter had, so we spent hours researching it. The more we looked, the more bad news we found. In the end, we stopped looking.
The tumour had been removed, and we hoped it might have been removed early enough for everything to be OK.
The next few months were great. She started nursery, had a birthday party, and she went on playdates with friends. It was normal life for a two-year-old: simple and fun.
Abbie was being regularly monitored, so we had a team watching over her. Unfortunately, in June 2003, they noticed her blood pressure had gone up.
She had various tests that seemed to indicate her cancer was back, so she was booked in for an MIBG scan – a special scan that can detect the presence of neuroblastoma.
This involved our little girl lying still under a large scanner plate for almost an hour, which would have been difficult for anyone, let alone a two-year-old. But she was an absolute star and, thanks to some help from Postman Pat – she lay with her head sideways so she could see the TV screen – she did it.
A few days later, we found out that the scan showed the cancer had spread. It was in her bones and bone marrow. Her cancer was now stage 4. It was the worst news imaginable.
But there were still positives to cling on to. Our consultant had treated much worse cases than our daughter’s, and the children had been OK. She was fit and healthy, which, to be honest, made the whole thing even more unbelievable.
Over the next 12 months, she had chemotherapy, surgery, more chemotherapy (a high dose this time), a stem cell transplant, and radiotherapy. Throw into the mix various other treatments – like antibiotics for a low white blood cell count, injections to aid blood clotting and medicine for low potassium levels.
It was an intense year, but she was amazing. At that age, children don’t really understand what’s going on.
Bizarrely, she loved The Royal Marsden. We never understood why. Nothing against the place, but we’d say ‘Abbie, we’re going for a sleepover at the Marsden’, and she’d say ‘yaaay’.
She used to understand that she’d got a lump in her tummy that shouldn’t be there, and that the treatment she was having was to get rid of the lump, but not much more than that. It was sometimes quite difficult to explain, because she often felt perfectly well. She didn’t think anything was wrong, yet she was doing regular trips to the hospital.
But she was brilliant about it. She never used to complain or get upset. She just took it as normal life. Sadly, for her, I guess it was.
As a parent, it’s a very strange thing to go through. You hear about childhood cancer, and you read about it, but you can’t imagine it will happen to you. When it did, there wasn’t really time to analyse what was going on. We were swept away on this rollercoaster, and we just had to ride it. And because she dealt with it so well, it helped us deal with it, too.
Abbie’s brother, Jamie, was two years older than her. He understood a little bit more about what was going on, but he was still too young to really know what was happening. He was brilliant.
He and his sister played so well together. It didn’t matter if she was in a bed in hospital, or running around the house with a plaster on her leg and tubes up her nose, she was still a real rough and tumble expert who loved annoying her brother.
After all that intense treatment, life returned to an element of normality, and it was great. Her hair began growing back, her fitness and appetite were returning, she had a party and celebrated her birthday with friends. She started swimming, dancing, and gymnastics. She began learning to read, and she taught herself to write her name.
In the lead up to Christmas that year, she was selected to be a cow in the school nativity play. She was disappointed she wasn’t going to be a donkey.
Abbie wasn’t a cancer patient. She was our daughter. Our three-year-old.
Then, in March 2005, when she was four, she developed a limp. She’d been to a party at a soft play area, so the obvious answer was that she’d bounced badly and got injured. But as time went on, we knew something wasn’t right.
We took her for scans and tests and, in the process, discovered the cancer was back. It was in the bones and the bone marrow. It was a relapse.
It’s one thing to hear your child’s got cancer, but to hear they’ve relapsed is just horrendous. Although I don’t think it was ever said, we knew that relapse was pretty much terminal.
What followed were countless agonising months of treatments, scans and being told she was in the clear, only for it to come back again.
It got to the point where we started having end-of-life conversations. Everything was about keeping her comfortable and happy. We made so many great memories in that time.
Through the Make-A-Wish Foundation, Abbie got to be a princess for a day. She was taken to the Disney Store in Guildford in a pink stretch limo, and she and her brother Jamie were given free rein and allowed to choose anything they wanted. And then the limo took her to a grand hotel where she was treated like royalty, and a butler served her a princess menu.
We went on holidays to Hastings and the New Forest, she took part in school concerts, she won a race on sports days in a high-speed buggy, she danced at a disco. There is so much to look back on and cherish.
Her final moments are a blur, but one of the last things I remember was her laughing.
We talk about our daughter all the time at home. Her other two siblings, who weren’t born when we lost her, know everything about her. They know her quirks and her funny sides. They know the same little girl Liz, Jamie and I do.
Abbie lives on in our memories, but she also lives on through Abbie’s Fund, the charity set up after our daughter relapsed in 2005 and a group of mothers from the local community arranged an amazing event to raise money for neuroblastoma research. Even though our little girl passed away, the charity lives on.
Every year – when the September anniversary of her death passes – it gives us a chance to remember what it was like going through this journey with her and to realise how everything has progressed beyond our wildest dreams.
We’ve raised over £700,000 to date – through marathon runners and cyclists, school mufti days, golf days, treasure hunts. Most of this has been used to support the amazing work of Professor Louis Chesler and his team at the Institute of Cancer Research (ICR), and we are so pleased with everything they’re achieving.
Our support has enabled them to make huge progress in developing blood-based testing for children with cancer.
This technology allows clinicians to understand the genetic variants in each child’s cancer, and it allows them to choose the treatment options that are most likely to work. It also helps to discover when a child has relapsed, before symptoms start to show.
The progress that’s being made is incredible.
The tagline for the charity is ‘make my childhood cancer survivable’, and in the space of a few years, we’ve gone from faint hope to realising it actually might be possible.
Abbie would be delighted to know that there was a charity named after her.
But she’d also be absolutely chuffed to bits to know that she was helping to, hopefully, lead to a cure for this horrendous cancer.
Mike Shaw is speaking at the 20th annual Carols from Chelsea this evening, the flagship fundraising event from The Institute of Cancer Research, London.
Abbie’s Fund supports the ICR’s research into childhood cancer. Find out more here: www.icr.ac.uk
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