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.