A mother whose seven-year-old daughter underwent “brutal” cancer treatment has backed the £300 million fundraiser for a new children’s cancer centre at Great Ormond Street Hospital.
The centre will help to save more children’s lives and will also develop “kinder” treatment options.
Daya Amole was diagnosed with stage four metastatic neuroblastoma, a rare and aggressive childhood cancer, after her mother, Pamela, found a lump in her daughter’s abdomen when she was 11 months old.
Since her diagnosis in 2017, Daya has had nine rounds of chemotherapy, including high dose, which caused her to lose her skin and nails as well as her hair.
She had lifesaving surgery in New York, stem cell transplants, six months of immunotherapy, and daily radiotherapy under more than 50 general anaesthetics.
Daya suffered several bouts of sepsis and multiple infections and Pamela said: “We nearly lost her several times.”
She added: “I have seen a lot of children die in two-and-a-half years and I didn’t know if my child would be next.
“There is nothing good that I can say about childhood cancer.
“It’s the staff at Great Ormond Street that make it a bearable place, that make it a wonderful place, that make it fun.
“They come in and they laugh and joke with the children. Everything they do is to get you home sooner and to make things better.
“It was through the dedication of the medical teams that she’s here today.
“They say it takes a village to raise a child. Great Ormond Street was my village.”
After a gruelling two-and-a-half years, Daya’s family was able to announce that she was in remission although she has long-term complications from the treatment, including seizures, and remains under the care of several teams at GOSH.
“Her resilience has been eroded and neuroblastoma treatment is brutal and invasive both mentally and physically,” her mother said.
“My daughter lost her childhood.
“I want a world where we see kinder treatments and cures.”
Daya and her twin sister Jasmine, who is profoundly deaf and has multiple complex needs, celebrated their seventh birthdays on Friday, September 22.
A fire truck surprised the girls and their friends at school and the family, who live in London, also enjoyed a trip to Legoland.
“During treatment, you think of all the wonderful things you’ll do together when it’s over, you fill yourself with hope to survive every day.
“In reality, you can’t do many things due to infection risks or ongoing medical needs.
“A birthday is a landmark on a timeframe, but in actuality I’m always thankful. These girls are my heroes and I marvel at them every single day.”
Pamela has also been able to fulfil her dream to walk on a beach with her three daughters – Daya, Jasmine and their 10-year-old sister Anaya.
“I’m lucky, I get to live with fear not grief. A lot of my friends live with grief,” she said.
“When you lose an elderly person you lose the shared tapestry of life and narrative that you had and you retain the memories, when you lose a child, you lose the future.
“We need kinder and quicker treatments and a cure for every type of cancer.
“Every child deserves the right to walk out of hospital and to never have to come back, they deserve to live a full life.
“Childhood and cancer are two words that should never go together. This is why we need the new children’s cancer centre at GOSH.
“We need to fight childhood cancer at the forefront with pioneering technologies. We need to destroy it, and we need to do that with kinder treatments.
“I spent an exceptional amount of time living in isolation and building up a bank of traumatic experiences. I’ve read a eulogy at a child’s funeral. I’ve seen too many children die.
“I have a moral and ethical duty to everyone coming up behind us, that will walk onto an oncology ward, to do more to make their journey better.
“Things need to change and it starts with us today and with a new dedicated pioneering children’s cancer centre at GOSH.”
Works are due to start next year on the new centre which will be a unique resource for children with some of the most complex and difficult-to-treat cancers and will support families from diagnosis to remission.
It will include inpatient wards, a cancer day care centre, operating theatres and a critical care unit, meaning specialist teams can all work together more closely in the same part of the hospital campus.
A new hospital school will have double the capacity and there will be outdoor spaces such as a roof terrace for families and staff to enjoy.
Cancer rates in children are increasing and, every week, around five children in the UK lose their lives to cancer. It is the biggest killer of children aged one to 14 in the UK.
GOSH already treats the highest number of children with cancer in the UK and has a long history of pioneering breakthroughs in cancer care.
The new centre, built on the hospital’s existing site in central London, will increase capacity, improve access to clinical trials and drive transformation in children’s cancer care.
– To support fundraising for the children’s cancer centre, visit: https://www.gosh.org/donate/the-childrens-cancer-centre/
