After being unwell for many weeks over the summer, in September 2018 Kale was diagnosed with a brain tumour located on his brain stem. He was immediately admitted to Bristol Children’s Hospital where they began to prepare for surgery to remove it the following week. Unfortunately, before that could take place Kale suffered a bleed on the brain; he was taken to surgery immediately where they were able to remove the tumour.
The tumour was tested and was benign. The bleed had caused some brain damage, but Kale was able to communicate using his eyes and was having daily therapies to help him recover and, day by day, he was making progress. That progress sadly came to a halt on the in October 2018 when Kale was back in surgery to have a new drain put in, and he suffered another bleed on the brain that caused him to have a seizure.
His mum, Jayne, said: “It’s been 3 years since our whole lives turned upside down and the grief and pain are still present. I do my best to be grateful for everyday but beneath the surface my heart is still breaking and I wish I could go back and change things. But none of us can do that so we just have to find a way through it, which is what I continue to do.”
Kale, Jayne and the rest of the family receive care and support from Children’s Hospice South West (CHSW) and first visited its local hospice, Charlton Farm, in April 2019. The family stayed again over the Christmas period.
Jayne said: “It was such a relief to spend Christmas at Charlton Farm as prior to that, Kale had been in Bristol Children’s Hospital for 18 months and that’s where he’d spent his last Christmas. Being at the hospice is a completely different experience and before we’d arrived the Care Team had thought of everything to make our stay special.
“Kale’s older brother spent Christmas day with us and his grandparents were able to visit too. We were surrounded by our family, which is what Christmas is all about; we couldn’t have done that in the hospital. We have so many lovely memories from that visit, including a very special visit from Santa himself.”
Kale has stayed at the hospice since the pandemic whilst essential adaptations were being made to the family home.
“I know the Care Team is always there for me, and that I can pick up the phone to them any time of the day or night for advice about Kale. They provide so much love and support to all of us,” said Jayne.
“Kale is one of the most incredible young men you could wish to meet. He’s such an inspiration and he works tirelessly to recover and we are still very hopeful he will continue to make a good recovery.”