Latest update: November 2018

It has been two years since Bella has had her bone marrow transplant. With every year that passes her chances of surviving increase and her chances of relapsing again decrease. The consultants say if we get to five years then the chances of relapse are hardly anything at all.

The first year after her transplant was probably the most difficult. She suffered badly from the effects of all her treatment and it took a lot of tears, energy and love to get her where she is today. She was able to start school and is catching up with all of her friends. Today she is a happy little girl and has forgotten all of the trauma she has been through.

We still attend regular hospital appointments and she will need to attend these appointments until she is 20 years old. She will need a bit more treatment in the future but until then she is enjoying being a six year old. Her resilience and determination amazes me everyday. Nothing is too much for her and she has the kindest most loving soul. I’m so proud of her.

Abbie, mum (November 2018)

April 2017: update

Bella got very bad GVHD of the gut and we spent the whole of November 2016 in our local hospital as she couldn’t eat anything. Then at Christmas, Bella had a urine infection which then got into her blood due to the lack of her immune system. She then had sepsis and was about an hour away from being in intensive care. We spent the whole of December in our local hospital.

We came home on Christmas day to be admitted again on Boxing Day. Bella’s body swelled up to triple the size, her blood pressure was sky high and her kidney was failing. We got transferred to the biggest children’s hospital, where we were told to prepare for the worst. Bella had the adenovirus in her blood which was multiplying rapidly, she had developed diabetes which couldn’t be controlled, her blood pressure was so high it was dangerous and again couldn’t be controlled.

She also had developed a disease called thrombotic microangiopathy (TMA). This disease is life-threatening and most patients don’t recover from it. The disease is so rare it had only been given a name five years ago and the only medicine that helps with the symptoms is from America and costs £500,000.

So we were told that the biggest children’s hospital had the money and would apply to America for the treatment. So after an agonising time through January and February she got the treatment and it started to help. We’re now home and have to visit the hospital every week as an outpatient for the treatment.

Bella has changed so much facially as was so swollen and poorly, it was awful. Everyone thinks that having a bone marrow transplant is the end of the road and you can go home and enjoy life again but it’s the total opposite.

It was all the effects from the meds and this TMA disease which she got due to the meds and the bone marrow transplant itself. It was such an awful time. The photo was taken when she was a lot better and recovering at home. Facially she is still very swollen but so much better than she was.

We had just started to enjoy the little things again

Bella was extremely unwell when first diagnosed. In fact she was so poorly that she nearly ended up in intensive care. Our lives had stopped. I held my little girl in my arms for days, while trying to come to terms with the fact my three-year-old had cancer.

It tore us all apart. It broke me to my soul. But she came through it and our lives started again. We could enjoy the little things like trying to spot birds on the way to nursery, playing with our sausage dog, or just being at home together.

Running and running to help children with cancer

During all of this I am still training for the marathon. It gives me a purpose to what feels like a hopeless existence. Running the marathon was always on my bucket list of things to achieve. I signed up to run for Children with Cancer UK because they provide vital research and funding to help find better treatments for childhood cancers.

I run with purpose. I run with a lot of tears and a broken heart. I run and run and keep on running.

Update: 2017

Abbie successfully completed her 2016 London Marathon and we caught up with her at the London Marathon Expo before this year’s London Marathon. In the video below Abbie tells us about running for Bella-Rose and other children with cancer.