Raeyah had chemotherapy once a week for six weeks, then an operation to remove the kidney and a small 5mm tumour that remained on her left lung after the first round of chemotherapy. Two weeks after the removal, she began an intense chemotherapy treatment, which took place every 21 days over three days - some were in-patient stays, and others were day cases.
This went on for nine months. Her diagnosis completely shattered our world, and we had to give up working to care for her and our other two children, one of whom has autism and is home-educated, so trying to keep a routine for him and going to and from the hospital at the drop of a hat for transfusions became hard and caused lots of anxiety for all of us.
Our eldest son missed nearly all of his first year in secondary school due to having to keep Raeyah safe and healthy enough for her treatment.
We became secluded and isolated from any kind of events or social situations. Raeyah was placed in remission in December 2022, exactly a year after her diagnosis. She relapsed four weeks later, and by the time the hospital carried out a proper investigation, it was too late.
Raeyah passed away eight weeks later, aged four, leaving her brothers, especially her brother with autism, struggling to understand what had happened.
Her loss has been unimaginable, but we have managed to start a charity to hopefully give some comfort to her brothers and help other families like ours.