As children’s cancer charity TCCL (Tayside and North East Fife Children with Cancer and Leukaemia) re-opens its St Andrews respite lodge and launches a new ‘Friends of TCCL‘ fundraising campaign, Michael Alexander speaks to the family of a Dundee cancer survivor.
Benny Jefferson’s story
Broughty Ferry parents Clare and Ally Jefferson know all too well what it’s like to have a child with cancer.
In May 2017, their son Benny, then 11, was sent home from P6 at Forthill Primary complaining of a sore throat and fever.
After developing a rash, further tests revealed he had acute lymphoblastic leukaemia.
Over the next almost three and a half years, his mum, dad, and older brother Jack stood by him as he went through gruelling chemotherapy.
The now 15-year-old third year pupil at Grove Academy, who starred in a BBC film funded by Children in Need and The Robertson Trust and whose image helped raise £50,000 for Cancer Support UK, went into five year remission last September.
All going well, he’ll get the all-clear in September 2025.
However, as mum Clare reflects on the challenges of the last few years, she remains particularly grateful for all the support that’s been received from locally-based charity TCCL (Tayside and North East Fife Children with Cancer and Leukaemia).
“Throughout the winter of 2016 going into 2017, Benny was at that stage where he was doing lots of activities including rugby through the winter, Scouts and some guitar,” recalls the 48-year-old South African.
“We were noticing he was slowing down a little bit, but we thought we were maybe just doing too much with him and didn’t think anything of it.
“Then he got a version of tonsillitis and the school had been sending him home quite a few times, saying Benny’s putting his head down in class and falling asleep.
“We took him to Grove Health Centre and they said maybe it was tonsillitis and gave him antibiotics.
“But over the weekend, he developed a rash all over his legs and chest area. They asked us to go to Ninewells as outpatients.
“They took blood tests. By the end of the day at about 7pm they called my husband and I into a room and they said it is leukaemia.
“They weren’t sure which type but said you’ll need to go to Edinburgh and they would do the tests.”
Reflecting on the gruelling 3.4 years of chemo that followed, Clare describes the “vicious cycle of not having a well-child” whereby he wasn’t always sick, but there was a lead-in time to being sick again.
He also had to shield during lockdown last year.
While Benny has now ended his cancer treatment and is in remission, Clare says “the battle is over but the war is not yet won”.
“He’s having mental health problems processing what he went through and was recently diagnosed with autism,” she says.
“He’s still got poor muscle tone. He doesn’t have that vitality you’d expect to have when you end treatment.”
New bike from TCCL
What has helped greatly in recent weeks, however, has been input from TCCL which arranged for Benny to get a new bike.
“Two of Benny’s friends had been encouraging him to ride a bike so he could keep up and do things with his friends,” explains Clare.
“Because of the age he was diagnosed in P6, he missed that whole stage of doing things like being allowed to walk home alone from school and going to the park with his friends on bikes alone for the first time.
“He mentioned to his physio at Ninewells that he actually quite enjoyed a recent ride on a friend’s bike.
“His physio thought it would be a great way to stretch out his calf muscles and improve his muscle tone.
“TCCL spoke to the Fife Cycle Centre in Leuchars. Previously they’d given a discount for the TCCL Lodge in St Andrews. They’d given very good advice in giving bikes for different ages.
“TCCL arranged to get a bike for Benny and he took possession of it a week ago.
“Now we are going to Dawson Park to allow Benny to learn how to ride a bike, which has been an exciting challenge and a nice distraction from where we’re at.
“We are looking forward to having many miles ahead of us yet!”
TCCL Lodge in St Andrews
Amongst the practical elements, the Jefferson family applaud the invaluable psychosocial and emotional support they’ve received from TCCL.
However, they have also benefitted from a respite stay at the TCCL Lodge in St Andrews during treatment and are looking forward to a return visit in the next few weeks.
As TCCL re-opens the lodge following an enforced period of closure during Covid, the Jeffersons are supporting the launch of the ‘Become a Friend of TCCL’ fundraising scheme.
The scheme aims to ensure it can continue providing much-needed breaks for children with cancer and their loved ones.
TCCL, which has been supporting families across Fife, Tayside and wider Scotland for over 25 years, marked the re-opening of its holiday lodge in St Andrews on Friday June 4, with the launch of the new ‘Friends of TCCL’ scheme.
TCCL has welcomed hundreds of families to its luxury lodge in the Fife seaside town since opening its doors in 2015.
Between October 2015 and October 2020, 139 families from across Scotland have had a week long holiday. An additional 25 families have had a short break.
However, the Covid pandemic meant the lodge had to temporarily close last year.
This meant a further 23 respite breaks has to be cancelled in 2020 due to Covid. However, two families were offered crisis breaks due to extenuating circumstances in lockdown.
Twenty-four families are now booked in for 2021 so far.
Like charities around the country, TCCL’s regular forms of income from events and street collections have suffered and the volunteer-led committee has now decided to launch the Friends direct debit scheme to make it easy for supporters to contribute.
Dr Rosalie Wilkie
Retired consultant paediatrician Dr Rosalie Wilkie spent around 28 years at Ninewells Hospital looking after children with cancer.
When she retired, she was delighted to become the chairwoman of TCCL Lodge – the sister charity of TCCL which raised £600,000 between 2012 and 2015 to buy, renovate and run the TCCL Lodge in St Andrews.
It allows families to holiday in the area safe in the knowledge that if they need to reach Ninewells Hospital in an emergency, they are in safe range to do so.
She says: “It was heart-breaking to have to close the lodge to visitors during lockdown especially since we know that there were so many children with cancer who would have benefitted from a visit.
“We are delighted that we will be able to re-open soon and our priority will be making sure it is as safe as possible.
“More than ever, these families need a break and we are hoping that by launching a Friends scheme we will provide an easy way for people to support us.
“We know events are always great fun and we are honoured that so many local people and businesses support TCCL, but we also know seeking sponsorship can difficult especially just how.
“So, as well as taking part in fundraising events we are inviting individual and businesses to donate a monthly amount as an easy and effective way of supporting TCCL.”
TCCL specialises in supporting families in the area who have a child under the age of 18 and who has been diagnosed with either cancer or leukaemia.
Stress for families
It’s conscious that the diagnosis of cancer or leukaemia in a child causes tremendous stress for families who struggle physically, practically, emotionally, and financially with the intensive, intrusive treatment regime and the inevitable disruption it brings to family life.
It works with local health services to provide additional supportive care during treatment and up to three years after treatment is completed.
Yet there didn’t used to be formal support for the families of child cancer parents.
Responding to the needs of parents, a group was put together offering general support, and this morphed into the formal launch of the charity in 1994, which was buoyed by support across the community.
An early achievement was the raising of £90,000 to create a landscaped garden area outside the Ninewells children’s ward. However, it widened its remit to offer psychosocial and travel support.
Travel grants were also offered to get parents to and from treatment if their child is in hospital away from home.
It’s also provided everything from a new washing machine, to heating grants to keep children warm during the winter months.
Dr Wilkie adds: “TCCL and TCCL Lodge have been so lucky to have so much support across Fife and Tayside.
“By becoming a ‘Friend of TCCL’, those who donate will be playing a vital role in ensuring children and families across Scotland continue to benefit from very special, memory-making trips to St Andrews.”
To donate visit the website www.tccl.org.uk/ and click ‘Make a Monthly Donation’.