Give Presence This Christmas

When three-year-old Teddy was diagnosed with a rare and aggressive cancer, his family's world changed overnight. His mum, Kat, shares their experience of living with neuroblastoma, the heartbreak of Teddy's relapse and how Rainbow Trust Family Support Worker Jayne has been by their side.
Our world turned upside down

Just after his third birthday, Teddy started feeling unwell. He was constantly picking up infections and complaining of pain in his sides. We were back and forth to the GP, but he never seemed to get better.
At first, we thought it might be appendicitis or a kidney infection. But when the pain continued, we returned to A&E, where an ultrasound revealed an 11cm mass on his kidneys.
Further tests confirmed our worst fears. Teddy had stage 4 neuroblastoma, a rare childhood cancer that had spread throughout his body.
“We went from thinking he had appendicitis to finding out he had stage 4 cancer. It completely turned our world on its head. My heart broke in two.”
Teddy was becoming increasingly unwell, and we faced an agonising wait while doctors carried out scans, biopsies and tests before treatment could begin.
At times, he was so poorly that he would spend the whole day lying in a darkened room, either crying or sleeping.
We also had a tiny baby, Rupert, to care for. Suddenly, everything we knew about family life had changed.

Finding support when we needed it most

Getting Teddy to and from hospital was another enormous challenge.
We don't drive, and because Teddy's immune system was so weak, public transport wasn't an option.
We relied on hospital transport, but it was unpredictable. Sometimes we would arrive hours before an appointment or be left waiting for collection long after Teddy's treatment had finished.
There were occasions when the hospital unit had closed and we were still waiting, with Teddy exhausted, sore and desperate to get home.
Our community nurse referred us to Rainbow Trust. I remember thinking that other families must need the help more than we did. But then we thought, if we don't need help, who does?
That is when we met our Family Support Worker, Jayne, in January 2023.

“The first time Jayne came to take us to a scan I felt a huge weight off. I hadn’t really realised how much extra stress the travel had added to our lives.”

Jayne's support meant we no longer had to worry about how we would get to hospital or how long we would be waiting to come home.

But she brought us so much more than transport.