In Our Hearts

Holly was just 11 when she passed away in September 2017, less than two years after being diagnosed with a highly aggressive brain tumour for which there is no cure. She endured two brain surgeries; chemotherapy and radiotherapy, the maximum amount a child could be given. Her family was devastated when, despite treatment, the brain tumour grew back leaving Holly disabled and bed-bound.

“Holly always wanted to live in a camper van; she loved them, and so she travelled to the crematorium in a specially-converted camper van with pink streamers waving from the roof corners. We all wore something pink in her honour. Her casket was pink with rainbows and her floral tributes included a unicorn head. She went with her faithful Dolly and Doggy and we all sprinkled fairy dust over her casket as we said goodbye. We think she is out there somewhere in a special place, chasing unicorns and rainbows, riding ponies and making fun of us when we do silly things – just as she used to do. We will never forget her.”

We are grateful to Holly who worked with us in February 2010 to share her story here. Sadly, she passed away on 18^th December 2017. We remember Holly as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. She will be forever in our hearts.

Ian Lowe’s brain tumour story is yet another example of how cruel and devastating the disease often is, and how desperately a cure needs to be found. After a routine cataract operation, the 56-year-old was told the disturbing news that a mass was sitting behind his eye. Ian was then diagnosed with a large and aggressive CNS lymphoma and his treatment options were extremely bleak. Just two months later, on Valentine’s Day 2017, Ian died, leaving an irreplaceable hole in the lives of his family.    

“In hindsight, Dad wasn’t quite right. He wasn’t himself. We’d be talking about one thing and he’d get confused and answer about something completely different. I guess we all just put it down to the fact he’d had a few drinks and, Dad being Dad, he just laughed it off and made a joke out of it. A moment that upsets me now, looking back, was when we said our goodbyes and he gave me such a heartfelt hug, it was as if he somehow knew he might not see me again.”

Ian was only 41 years old when he passed away, just three months after learning he had an aggressive glioblastoma multiforme (GBM4).  His passion for riding and specifically the sport of eventing, led his widow, Kathryn, to establish the Ian White Memorial Trophy.  This is presented each August during the Smith’s Lawn horse trials in Windsor Great Park to the best amateur event rider.

“Ian was then transferred to the John Radcliffe in Oxford where he underwent a biopsy – we had already been told that he wouldn’t have surgery because of the position of the tumour.  Until this point we clung on to thinking that there would be some hope, but when we were given the results of the biopsy, that Ian had a high- grade glioblastoma multiforme (GBM4), we both knew this was it.  We saw the consultant together.  He was quite clear that Ian couldn’t be cured…”

Diagnosed with a brain tumour at just 14 months, Isabella defied the odds to outlive her prognosis before she passed away aged five, at home in her mother’s arms, with her three doting sisters kissing her goodbye. Despite her illness, Isabella remained a happy child who loved to sing and dance, to play with her dolls and feel the wind in her hair. She went to school whenever she could and is much missed by so many.

“It was very touching that, as the funeral procession passed school, the teachers were standing by the fence and her classmates were in the playground, calling out ‘Here’s Isabella’ and waving. I don’t feel angry about what happened but I do feel a great sense of sadness that Isabella didn’t get the chance to grow up. I will be forever grateful for the doctor’s honesty which allowed me to accept that, sometimes you have to settle for quality of life rather than quantity, and this allowed me to ensure we gave her the best life possible.”