Parents praise cancer charity’s invaluable support as they back ‘Friends of TCCL’ fundraising campaign
As a Child Cancer Charity TCCL (Tayside and North East Fife Children with Cancer and Leukemia) reopens its respite lodge in St Andrews and launches a new ‘Friends of TCCL’, Michael Alexander speaks to the family of a cancer survivor in Dundee.
The Story of Benny Jefferson
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.
© Mhairi Edwards Benny Jefferson in the early days of treatment in July 2017
After developing a rash, further tests revealed he had acute lymphoblastic leukemia.
For the next nearly three and a half years, his mother, father and older brother Jack stood by him through the grueling chemotherapy.
© Mhairi Edwards Benny Jefferson with his family in 2017
The now 15-year-old third-year student of 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 remission last September of five years.
If all goes well, he will get everything off in September 2025.
But as Mother Clare reflects on the challenges of recent years, she remains deeply grateful for all the support she has received from local charity TCCL (Tayside and North East Fife Children with Cancer and Leukemia).
“During the winter of 2016, until 2017, Benny was at that stage doing a lot of activities, including winter rugby, scouts and some guitar,” recalls the 48-year-old South African.
© Steve MacDougall/DCTMedia Benny Jefferson, center, in 2020 next to family (left to right) brother Jack, father Ally and mother Clare
“We noticed he was slowing down a bit, but we thought maybe we were just doing too much with him and thought nothing of it.
“Then he got a version of tonsillitis and the school had already sent him home a few times because he said Benny put his head down in class and fell asleep.
“We took him to the Grove Health Center and they said it might be tonsillitis and gave him antibiotics.
“But over the weekend he got a rash all over his legs and chest. They asked us to go to Ninewells as an outpatient.
© DC Thomson Ninewells Hospital, Dundee
“They did blood tests. Towards the end of the day at about 7pm they called my husband and I to a room and they said it was leukemia.
“They weren’t sure which type but said you had to go to Edinburgh and they would do the tests.”
Looking back on the grueling 3.4 years of chemo that followed, Clare describes the “vicious cycle of not having a healthy child,” where he wasn’t always sick, but there was a lead time to getting sick again.
He also had to shield himself during the lockdown last year.
© Steve MacDougall/DCTMedia Benny Jefferson in 2020
While Benny has now finished his cancer treatment and is in remission, Clare says “the battle is over, but the war is not yet won”.
“He has mental health issues processing what he’s been through and he was recently diagnosed with autism,” she says.
“He still has bad muscle tone. He doesn’t have the vitality you would expect when you stop treatment.’
New bike from TCCL
However, what has helped tremendously over the past few weeks is the input from TCCL, who got Benny a new bike.
© Provided by Clare Jefferson Benny Jefferson with his new bike supplied by TCCL
“Two of Benny’s friends had encouraged him to ride a bike so he could keep up and do things with his friends,” Clare explains.
“Because of the age at which he was diagnosed in P6, he missed that whole phase of doing things like being allowed to walk home alone from school and going to the park with his friends by bike for the first time.
“He told his physio at Ninewells that he had quite enjoyed a recent ride on a friend’s bike.
“His physio thought it would be a great way to stretch his calf muscles and improve his muscle tone.
© Provided by Clare Jefferson Benny Jefferson tries out his new bike supplied by TCCL
“TCCL spoke to the Fife Cycle Center in Leuchars. Previously they had discounted the TCCL Lodge in St Andrews. They had given very good advice on giving bikes for different ages.
“TCCL arranged a bike for Benny and he took possession of it a week ago.
“Now we are going to Dawson Park to teach Benny to ride a bike, which was an exciting challenge and a nice distraction from where we are now.
“We are looking forward to many more miles ahead of us!”
TCCL Lodge in St Andrews
Beyond the practicalities, the Jefferson family applauds the invaluable psychosocial and emotional support they have received from TCCL.
© Provided by Caroline Trotter Elliot and Aaron Berghuis of Cupar reopen TCCL Lodge after Covid closure
However, they have also benefited from a respite stay at the TCCL Lodge in St Andrews during treatment and are looking forward to another visit in the coming weeks.
as TCCL reopens the lodge after a forced closure during Covid, the Jeffersons are supporting the launch of the ‘Become a Friend of TCCL’ fundraising program.
The scheme aims to ensure that children with cancer and their loved ones can continue to provide much-needed breaks.
TCCL, which has been supporting families in Fife, Tayside and greater Scotland for over 25 years, celebrated the reopening of its holiday lodge in St Andrews on Friday 4 June with the launch of the new ‘Friends of TCCL’ programme.
© Provided by Caroline Trotter Elliot and Aaron Berghuis of Cupar to reopen TCCL Lodge in St Andrews after Covid closure
TCCL has welcomed hundreds of families to its luxury lodge in the seaside town of Fife since opening in 2015.
Between October 2015 and October 2020, 139 families from across Scotland took a week-long holiday. Another 25 families have had a short break.
However, due to the Covid pandemic, the lodge had to temporarily close last year.
This meant that an additional 23 grace periods had to be canceled in 2020 due to Covid. However, two families were offered crisis breaks due to extenuating lockdown circumstances.
© SYSTEM TCCL Lodge open day in 2015
24 families have now been booked for 2021.
Like charities across the country, TCCL’s regular revenue from events and street fundraising has suffered and the volunteer-led committee has now decided to launch Friends’ direct debit order to make it easy for supporters to contribute.
dr. Rosalie Wilkie
Retired consultant pediatrician dr. Rosalie Wilkie spent about 28 years at Ninewells Hospital caring for children with cancer.
When she retired, she was delighted to become Chair of TCCL Lodge – TCCL’s sister organization which raised £600,000 between 2012 and 2015 to buy, refurbish and run the TCCL Lodge in St Andrews.
© SYSTEM Dr. Rosalie Wilkie
It allows families to vacation safely in the area knowing that if they need to get to Ninewells Hospital in an emergency, they are within safe range to do so.
She says: “It was heartbreaking to have to close the lodge to visitors during the lockdown, especially as we know there were so many children with cancer who would have benefited from a visit.
“We are delighted to be able to reopen soon and our priority will be to ensure it is as safe as possible.
“More than ever, these families need a break and we hope that by launching a Friends program we will provide an easy way for people to support us.
© DCT Media In 2017, TCCL Lodge in St Andrews surprised families using the facility during the holiday season with an extra cool treat from local company Jannettas Gelateria.
“We know that events are always a lot of fun and we are honored that so many local people and businesses support TCCL, but we also know that seeking sponsorship can be difficult, especially how.
“So we not only participate in fundraising events, but also invite individuals and businesses to donate a monthly amount as an easy and effective way to support TCCL.”
TCCL specializes in supporting families in the region who have a child under the age of 18 and who have been diagnosed with cancer or leukemia.
Stress for families
It is aware that the diagnosis of cancer or leukemia in a child causes enormous stress for families who struggle physically, practically, emotionally and financially with the intensive, intrusive treatment regimen and the inevitable disruption it brings to family life.
It works with local health services to provide additional supportive care during treatment and for up to three years after treatment is completed.
© DC Thomson & Co Ltd St Clement’s RC Primary School, Dundee, raised money for TCCL Lodge in 2016
Yet there used to be no formal support for the families of parents with childhood cancer.
To address the needs of parents, a group to provide general support was formed, and this morphed into the formal launch of the charity in 1994, which was supported by community-wide support.
An early achievement was raising £90,000 to create a landscaped garden outside Ninewells children’s ward. However, it expanded its remit to provide psychosocial and travel support.
Travel grants were also offered to get parents to and from treatment if their child is out of the hospital in the hospital.
© SYSTEM TCCL 25th Anniversary Ball at the Apex in Dundee in 2019
It has also taken care of everything from a new washing machine to heating subsidies to keep kids warm during the winter months.
dr. Wilkie added: “TCCL and TCCL Lodge have been so lucky to have so much support in Fife and Tayside.
“By becoming a ‘Friend of TCCL’, those who donate will play a vital role in ensuring that children and families across Scotland continue to benefit from very special, unforgettable trips to St Andrews.”
To donate go to the website www.tccl.org.uk/ and click on ‘Make a monthly donation’.
© Provided by Caroline Trotter A home from home: Cupar’s Elliot and Aaron Berghuis reopen TCCL Lodge after Covid closure