A mother who set up a children’s hospice in memory of her eight-year-old son, who died from a brain tumour, has praised the work of a foundation which has helped her, and her team bring smiles to the faces of children and their families.
Fiona Devine’s son Alexander was diagnosed with a brain tumour when he was just four years old. After Alexander’s passing, four years later, Fiona embarked on a journey not knowing what was ahead. With her own experience of caring for her terminally ill son she realised there was no hospice support for children in her county, so she set up the Alexander Devine Children’s Hospice Service.
The hospice, which is based in Berkshire, offers respite care, specialist play, symptom management, family support, end of life care and bereavement support to families in Berkshire and the surrounding counties.
Speaking about her beautiful boy, Fiona said: “Alexander was our first-born child. I had a normal pregnancy; normal delivery and he was meeting all his normal milestones that you would expect a baby to do. But unfortunately for a period of time, just before his fourth birthday, he was having lots of headaches, being sick and feeling very tired.
“You know it's your first baby, your first child, so it's hard to know whether or not he was unwell because he was full time at nursery and maybe he was picking up multiple viruses.
“I had him backwards and forwards to my doctor’s surgery. Little ones at that age do pick up lots of things. But I think you have to trust your instinct as a new mum, and I just wasn't happy with the way he was. I had asked for a referral to a paediatrician, and, sadly, while we were waiting for that appointment to come through, Alexander woke up one Sunday morning and it was almost like he had a stroke. His whole left side had gone, his speech was slurred. He was really struggling to stay awake. So, we rushed him to the emergency on-call doctor, and he said to take him straight to our hospital and not to go to A&E - which is what we did.
“Alexander was scanned on the Monday and tragically they found a mass in his head. By Wednesday we were in the Leopold Ward at the Radcliffe Infirmary in Oxford, supporting Alexander who received his first brain surgery.
“So, from diagnosis to his first operation, it was an absolutely devastating time. It was such an enormous amount of tragic news to get your head around. It really was a trauma. So, following his first operation, Alexander had six weeks of radiotherapy and more surgery. He had a clear year, so he was able to start school, you know, get back to whatever a normal life is.”
Sadly, however, Fiona noticed that Alexander was daydreaming a lot, having slight seizures and alarm bells rang. Alexander’s cancer had returned. There was no longer an option of surgery.
Fiona said: “There was no curative treatment at that time. He had run out of options. So, all we had was chemotherapy to treat symptoms and to try and prolong life.
“But there is a real balance between prolonging life and having a quality of life.
“Alexander was diagnosed just before his birthday and sadly passed away when he had turned eight. His birthday was in the October, and he passed in February.”
It was through Fiona’s family’s experience they realised that in Berkshire there was no dedicated specialist service for children at the end of life, and a stretched service, for those children who were on that very sad journey of being diagnosed or having a life limiting or life-threatening illness.
She added: “We did a lot of research and there was nothing available for families. You know, we knew nobody, we had nothing. We had no connections, and we didn't have any money that's for sure. We were just a very ordinary family who were blessed with an extraordinary little boy who really was my best friend and who was kindness itself. He was funny, clever, and very kind. He was everything you would want your child to be. But it was an added trauma having to travel out of our county to receive that specialist care. That’s how his charity was born.
“So, here we are, 15 years later. When we started, we were going through a recession, and we have just had two years of Covid-19. Everything we do relies so heavily on fundraising and organisations being really kind to us. One such organisation is the London Irish Foundation – another charitable organisation which gives so much to people and to communities. It is a charity which has really helped us put smiles on our children’s faces.
“Our relationship with the foundation is a lovely one. When they come to the hospice, it’s always a huge buzz for our children. Alexander would have loved it. He was a rugby fan. The children really love that interaction with the London Irish Rugby Club players. The foundation has been so generous around Christmas by giving Christmas presents to children and their families. They also give us tickets to games, which, is a really lovely thing for families to be able to do, particularly for the dads. I think dads can get overlooked sometimes. It's hard because people grieve in very different ways, and, very often, not always the case, but men are sometimes perhaps not so good at talking things through perhaps as females are. So actually, doing things like going to a game, whether that be with the family, or with a friend, it’s really good therapy.
“We really love the fact the London Irish Foundation is a community-based charity and that they want to get involved with youngsters. It does mean such a lot to our families and children. Their support means such a great deal to us all.
“I wish the foundation every success in its fundraising dinner on May 14, 2022. Their work is really brilliant, and we certainly are so appreciative of the foundation helping us help such vulnerable children who love to smile.”
To book a table for the dinner, which is supported by Worldwide Financial Planning, email [email protected]