Raining in my Heart
Raining in my Heart tells the heart-warming story of three extraordinary children at the forefront of cancer research. The decisions they make, and the risks they take with their own lives, will benefit countless children and adults affected by cancer in the future.
Sophie (12), Fabian (11) and Chloe (3) are going through an ordeal no child should have to suffer. Their lives are on the line, and their only hope of living through the challenges of the coming months is to become some of the first children in the world to go through experimental treatment at Great Ormond Street Hospital.
A diagnosis of childhood cancer is every parent’s worst nightmare, but the children’s outlook is in turns brave, funny and humbling. Their indomitable spirit shines through at even the worst of times, and Sophie’s motto of “Happy Happy Happy, Fun Fun Fun, Always Smile” typifies the attitude of these inspiring kids.
As Cassia (14) says of her little brother Fabian, who is battling high risk leukaemia, “He’s had to learn some pretty adult stuff being in hospital and going through things that none of his friends will ever understand. I think it’s made him a stronger person, definitely.”
The families of Sophie, Fabian and Chloe are putting their faith in immunotherapy, a highly experimental new line of treatment that doctors hope will one day bring an end to cancer for good.
Sensitively filmed over two years in hospital and at home, this film captures everything from the joy and excitement of the successes, to the pain and heartache when things go wrong. Filmed from the children’s perspective, we see how life is turned upside down for the children’s siblings as well, and how the likes of 8-year-old James, brother of Chloe, deals with the challenges. “My Dad said last night that children's cancers don't get much worse than what Chloe's got.”
When a child has cancer, each day is very precious. Filmed over 2 years, by the BAFTA-winning Brian Woods and film-maker, Jess Stevenson, this is a story, rich in humour and hope, of young lives lived to the full in the face of a deadly disease.
The Children
Sophie is a vibrant, bubbly girl who at just 12 is fighting leukaemia for the fourth time in her life. On hearing that the disease had returned, she says philosophically, “Of course I was upset, but there’s something we can do. So do it.”
With all conventional treatments exhausted, that ‘something’ is a new immunotherapy trial at Great Ormond Street, led by Professor Persis Amrolia. Sophie is due to receive special cells that have been genetically modified in a laboratory to fight her cancer. But first she must have a bone marrow transplant, and with her immune system wiped out, she must live in an isolation room for weeks on end.
Her room, decorated with One Direction posters, is the most glamorous on the ward. Sophie’s motto, "Happy Happy Happy, Fun Fun Fun, Always Smile," her infectious laughter and her mischievous sense of fun are undiminished even when she’s confined to the same four walls in hospital. She admits it does get boring though. “I feel like a caged animal. It’s like just living in your front room for weeks.”
Fabian (11) is also on Professor Amrolia’s immunotherapy trial. He has a special name for the modified cells that he is receiving from his 14 year old sister, Cassia: Tank T cells. “The good cells fight the bad cells and destroy them,” he explains. “And as soon as they’re destroyed I won’t be ill anymore. Which is a good thing. So I call them TT Cells, Tank T Cells… Rather a fetching name actually!”
Fabian is a stoical little boy with a wicked sense of humour and a passion for Lego. He looks forward to growing up, and having a wife, and a house, and a car. His parents hope that the pioneering immunotherapy treatment he receives will make that wish a reality.
Following the infusion of the special cells, Fabian and his family face an anxious wait after a bone marrow test, to see if the leukaemia has been kept at bay.
Chloe, aged 3, has neuroblastoma, a rare and very dangerous cancer of the nervous system. By the time it was diagnosed it had already spread to her bones, and she faces a year of intensive treatment to rid her body of the disease.
First, she must undergo a long day of surgery to remove a tumour wrapped around her kidney. As her surgeon puts it “The tumour wraps around the blood vessels like concrete around pipes, and we have to peel it away with the knife.”
Chloe then spends nearly 7 months going to and from Great Ormond Street Hospital for “high dose” chemotherapy (so strong it could kill an adult), radiotherapy and the course of immunotherapy that doctors hope will stimulate her immune system to kill off any remaining cancer cells.
It is a treatment plan that would test the resolve of any adult, but at just three, Chloe knows no different. As her Dad Richard explains, “To her it’s normal. It’s only in a few years time when she’s older we can explain to her that you’re quite special, and what you’ve been through is huge.”
Chloe’s cancer has meant that her older brother James (8) has had to grow up fast too. His concern for his sister is incredibly moving. “I’m proud of her because she’s so strong. Even stronger than me I think!”
Despite the aggressive treatment, Chloe never loses her cheeky sense of humour, and it isn’t long after chemotherapy that she’s an unstoppable bundle of energy once more. When it’s time to come off the feeding pumps she’s been attached to for weeks, her excitement is heartwarming to see. “I want to go on my bike,” she says, “I want to put trousers on. And socks. Daddy will take me!” Soon she is racing around the hospital on her bike, keeping all the nurses on their toes.
Chloe’s sense of humour brightens even her parents’ darkest days. The resilience of all the children is comforting to see and is summed up by Chloe when she announces to her Mum that, “I’m a bit better… A little bit better… I want to get better!”
They all deserve to.
Click on the features below to read them
Further Information
Chloe
Chloe’s family is fundraising so that all options are open to them in treating Chloe’s cancer. If you would like to donate to Chloe’s fund, please visit her JustGiving page
or you can text CHLE88 and your amount £1-10 to 70070.
Chloe's appeal is run by the Neuroblastoma Children’s Cancer Alliance. Any excess funds that Chloe doesn’t need will be used by the NCCA to help other children fighting neuroblastoma.
You can find out more about how Chloe is doing right now at her family’s Facebook page
You can follow Chloe’s appeal on Twitter @Chloeballoqui and to comment, use the hashtag #savechloe
Neuroblastoma is the most common type of cancer in infants. Neuroblastoma kills more under-fives in the UK than any other disease. Source: NCCA
Fabian
Read more about Fabian’s story at his family’s blog, Faith for Fabian
Fabian’s family have set up a charity to fund research into treating blood cancers and support families who need to access expensive treatment abroad. You can donate using the PayPal button here.
Useful links
The Neuroblastoma Society funds research to find new treatments for neuroblastoma and improve existing treatments
SIOPEN is an international organisation bringing together healthcare professionals to improve treatment for children with neuroblastoma
Leukaemia & Lymphoma Research is a leading UK cancer research charity dedicated to beating blood cancers
Children's Cancer and Leukaemia Group is a leading children's cancer charity
The US based Clinical Trials Database is a searchable database listing all ongoing trials in the world. You can enter a disease, and search for open trials in the UK to see if there is a trial currently recruiting that may be relevant to you or your loved one.
You can read about the trial led by Professor Amrolia that Sophie and Fabian were on here -
CD19-CAR Immunotherapy for Childhood Acute Lymphoblastic Leukaemia (ALL) T-Cell trial
Someone in the UK is diagnosed with a blood cancer every 20 minutes. Bone marrow transplants are increasingly being used as life saving solutions so there is a growing need for bone marrow, or stem cell donors.
You can register as a stem cell donor - and potentially save a life - through any of the following organisations in the UK:
- British Bone Marrow Registry (BBMR)
Tweets about Raining In My Heart right now:-
RUNTIME:
47 Minutes
DIRECTOR:
Jess Stevenson
Brian Woods
RELEASED:
2015
Awards
Nominated Science & Technology
Rockie Awards 2016
Nominated Contemporary Domestic
Grierson Awards 2015
Reviews
"Children fighting cancer featured in a dignified and sun-dappled film — but sometimes the cure did not come quickly enough"
Andrew Billen - The Times
"This sensitive film was a moving insight into their lives – forever in and out of hospital, stuck for weeks in protective isolation – and the impact on their families, who spoke with emotional articulacy and strived to give them a sense of normality."
Michael Hogan - The Telegraph
"In the space of an hour, this film conveyed just a fragment of the agonies that parents of children such as Chloe must go through, helpless to end the suffering of the people they love most. "
Christopher Stevens - Daily Mail
"Pick of the Day - The parents' anguish is tangible - how can you expose your child to new medical treatment that can harm not heal? How can you not?"
Victoria Segal - Sunday Times
"Highly affecting documentary ... offers an exceptionally moving insight into the lives of children with cancer"
Hannah J Davies - The Guardian
"Brian Woods's tender film about three children undergoing gruelling, pioneering cancer treatment, has stayed with me. I won't tell you any more, just ask you, please, to watch."
Alison Graham
"It is mind-blowing what these children go through. They are so young when they come to us. The families are so brave"
Sian Griffiths - The Sunday Times
"Ground-breaking TV documentary followed three children in medical trials"
Nikki Murfitt - Mail on Sunday