A Suffolk family whose young son has been through treatment for a rare cancer are helping to launch a national awards scheme that recognises the courage of children with the disease.
Alec Carpenter, who turns two in January, needed a major operation and months of chemotherapy after a large tumour was discovered in his chest cavity and he was diagnosed with neuroblastoma last year when just 19 weeks old.
Tumours were also discovered in his liver, stomach, spine, skin, bones and lungs.
Earlier this year his mum and dad Nicola and Glen were given the news that he is in remission from the rare cancer that affects children, mostly under the age of 5 years old.
The family is now helping to promote the Cancer Research UK Kids & Teens Star Award, in partnership with TK Maxx, which celebrates the strength shown by young people who have been affected by cancer.
Alec’s mum Nicola Carpenter, , said: “The bravery he showed during treatment was amazing but he still has to brave now. The operation left him with Horner Syndrome which means he can’t control his body temperature on one side. One arm and hand are very weak and he has a droopy eye. His speech is delayed because the cancer was in the bones in his face and his muscles weakened.
“Our experiences have shown us how important research is but also how important it is that we get kinder treatments for children.”
The Carpenter family are keen supporters of research. Throughout Alec’s treatment they allowed doctors to send any spare tissue and blood samples to the research bank.
Nicola said: “The research nurses at Addenbrooke’s asked us if we were happy for the spare samples to be used in research. There were no extra tests or procedures involved so it was a no brainer for us to say yes. We’d encourage all parents to do the same as it will help develop kinder treatments and hopefully a cure for neuroblastoma.
“In February, Alec will have been in remission for a year, the next big milestone after that will be when he is five years free of cancer.
“Every time when he has a test or MRI to see if the cancer has returned it is horrendous. Whenever Alec gets poorly or has a stomach ache, I always worry it’s come back. The fear doesn’t go away. If he did relapse, our best option would be a clinical trial. The neuroblastoma trials that I’ve read about are all supported by Cancer Research UK, it shows how important fundraising is.”
Alec’s tumour had misplaced his windpipe, it had moved his heart and took up most of his lungs. An operation removed 95% of it, chemotherapy targeted the rest and the tumours that had spread. Every two months he has a urine test and every four months a scan to see if there is any change to his condition.
Alec needs to have physiotherapy on his arm and fingers every day at home and is slowly getting his mobility back but there are no guarantees that he will have full movement and strength in his arm and hand.
Danielle Glavin, spokesman for Cancer Research UK Kids & Teens in Suffolk, said: “We’re proud to have Alec as the face of Cancer Research UK Kids & Teens Star Awards in the East. These awards recognise the incredible bravery of young people, children and babies, like Alec, who have been diagnosed with cancer.
“Our mission is to fund research to find new, better and kinder treatments for children and young people who are diagnosed with cancer in the East and across the UK. We want to bring forward the day when no young person dies of the disease, and ensure that those who survive, do so with a good quality of life.
“So we’re calling on people to support the awards and to nominate any inspirational youngsters for this year’s Star Awards so that we can recognise their incredible courage.”
The awards are open to all under-18s who currently have cancer or have been treated for the disease in the last five years. All nominated children will receive a trophy, £50 TK Maxx gift card, t-shirt and certificate signed by a host of famous faces including Emma Thompson, Una Healy, Aston Merrygold and Peter and Emily Andre.
Since 2004, TK Maxx has raised over £32 million for Cancer Research UK’s work through stock and cash donations. Of this, over £28 million is supporting pioneering research into children’s cancers specifically, and £4 million supporting general cancer research. Their next campaign is Christmas Sock Day on 6 December.
To nominate a child for an award, visit cruk.org/kidsandteens
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