Parents Rally with Leukaemia UK: Urgent Call for Donations to Halt Childhood Blood Cancer Havoc
INTERNATIONAL CHILDHOOD CANCER DAY – FEBRUARY 15TH 2024
- Parents of children affected by leukemia, the most common of all childhood cancers, say more investment in research is essential
- The lengthy, grueling treatment, even if successful, can destroy normal childhood
- Charity Leukaemia UK is funding research projects that have the potential to save children’s lives and create kinder treatments
Parents of children whose lives have been devastated by leukemia have joined the charity Leukaemia UK on International Childhood Cancer Day (February 15th) in calling for more research into blood cancer.
Leukaemia is the most common type of childhood cancer, accounting for around a third of all cancers in under 15s. Nine out of ten children survive, but the treatments, which have remained largely unchanged since the 1960s, are harsh and take a huge physical and emotional toll on both the child and the whole family.
Parents Debbie Jacobs, who lost her 12-year-old son Jacob, and Tajana Charles, whose son Henry, 13, has been undergoing grueling treatment for three years, say the effects of the disease on the lives of the whole family are devastating. They both want to see more research not only into treatments that cure leukemia but are less grueling for the children undergoing them.
Research into leukemia has brought about a dramatic increase in survival rates in children in the last 50 years. Only 33% of children would live for more than five years after diagnosis between 1971 to 1975 – now 88% survive. *
Leukaemia UK is funding research projects that aim to find kinder, more effective treatments for acute lymphoblastic leukemia (ALL), the most common childhood leukemia, and other blood cancers that affect children. But the charity is calling for more donations so they can invest in further projects.
Fiona Hazell, Chief Executive of Leukaemia UK, said: “Childhood leukemia affects the whole family in the most terrible way. The grueling, lengthy nature of the chemotherapy and other treatments can effectively destroy years of normal childhood and put a massive emotional strain on everyone around them.
“Research has brought about dramatic increases in survival rates over the past 50 years and given precious hope to parents and those youngsters who have been given a devastating leukemia diagnosis. However, chemotherapy is still the main treatment, as it has been since the 1960s. Although breakthroughs are happening all the time, it’s only by investing in more research that we will bring them about. That’s why on World Childhood Cancer Day we’re renewing our call for donations so that we can fund more research into kinder, more effective treatments.”
Jacob Benson lost his four-year fight against ALL in October 2010. 12-year-old Jacob had Downs Syndrome – children and adolescents with the genetic condition are between 10 and 30 times more likely to develop leukemia. In 2006 Jacob was in mainstream school, enjoying life with his friends and talking about becoming a chef when he grew up. He was diagnosed with ALL after developing a rash and fatigue. Before he died, Jacob underwent years of harsh chemotherapy that left him at times weak, emotional and a much smaller version of himself in body but not in spirit.
“The hole he left in everyone’s life was immense,” says Jacob’s mum Debbie, 56, who lives at Old Burghclere in Hampshire. “I can honestly admit that not once during those four years did Jacob ever complain. His incredibly sunny, positive outlook on life kept us all going. Only once did he ask me ‘am I going to die’ to which I replied, ‘we are all going to die darling one day.’ It was Jacob’s outlook on life that carried all of us through the saddest time of our lives. His legacy has focused us on fundraising for Leukaemia UK in the hopes that better treatments can be found so other families don’t have to go through the loss that we have had to endure.”
Henry Charles was diagnosed with ALL in July 2020 at the age of 10. He’d been suffering from bleeding gums and fatigue and had started losing weight. Henry is now in remission after three years of treatment which has put extreme emotional and financial pressure on his whole family.
“I will never forget that as we were getting into the ambulance I noticed one of the nurses giving me a sad look, like she was feeling sorry for me,” says Henry’s mum Tajana, 43, who lives near Norwich in Norfolk. “It really struck me. I wondered why she was looking at me like that. I now know why she did that – she knew what we’d have to go through and how hard it was going to be. I think you only realise how hard this is if you’ve been through it. No one else really understands. More money needs to be spent on researching treatments that not only work but work more quickly and take less of a physical toll on the children undergoing them.” (Case study in full below)
Leukaemia UK John Goldman Research Fellow Dr. Victor Llombart, from University College London, is carrying out research that could have a significant impact on the treatment of childhood leukemia. He’s looking at MYC, one of the key proteins in the development of the ALL subtype known as T-ALL.
Dr Llombart said: “Acute lymphoblastic leukemia is the most common leukemia in the pediatric population and about 15% of these correspond to T-ALL. Despite significant advancements in treatment modalities, the prognosis of some of these patients remains poor, particularly in relapsed or refractory cases.”
Uncovering more about how and why MYC becomes faulty could open doors to new treatment options. “About 80 percent of patients with this type of ALL show a faulty MYC function,” adds Dr Llombart. “And MYC is also a factor in other subtypes of leukemia and in many solid tumors that develop aggressively, so I hope my research will benefit many leukemia patients in the long term. Over the past few decades we have seen a big improvement in the cure rate for patients with ALL. What has been crucial is the funding and resources that have been allocated to this research. My hope for the future is that we can accelerate this progress and that leukaemia patients can benefit from treatments that are 100 per cent effective and hopefully have very limited side effects so they can live long, normal lives.”
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Vogue model Saffron Vadher, 26, is a Leukaemia UK Ambassador, working to raise awareness about the blood cancer. She was diagnosed with leukemia just before her fourth birthday in 2000. Saffron endured five years of chemotherapy which disrupted her schooling and family life, and left her with painful memories of losing her hair along with a phobia of needles. She has since built an international modeling career and been photographed by Steven Meisel, Peter Lindbergh and Annie Leibovitz. Saffron said: “Without research, I would simply not be here today. My years of treatment were so grueling and affected my whole family. It’s only through generous donations to Leukaemia UK that we can continue to fund research into treatments that are more effective, and kinder on children.”
CHILDHOOD LEUKAEMIA – THE FACTS
- The most common type of leukemia in children is acute lymphoblastic leukaemia (ALL). Around 400 under-14s are diagnosed in the UK each year (statistics from Cancer Research UK 2016 – 18)
- The 5-year survival rate for ALL in under 15s is 92% (Haematological Malignancy Research Network statistic 2012 – 2016)
- Chemotherapy has been the main treatment since the 1960s
- However some children and young people who have ALL and are not responding to treatment or have relapsed may be offered another treatment. This could include a targeted cancer drug, immunotherapy or a bone marrow transplant.
Case study – Jacob Benson
(FULL CASE STUDY, PHOTOS AND INTERVIEW WITH DEBBIE AVAILABLE ON REQUEST)
Jacob was born with Down’s Syndrome in 1998. He grew up to be an intelligent, highly functioning, permanently happy little boy. Jacob thrived in mainstream education, attending the local primary school and enjoying a huge circle of friends.
But in 2006 when he was eight he became lethargic, started having night sweats, and developed a pinprick rash on his legs. After being told by a GP it was probably a virus, Debbie’s Google searches revealed that Jacob’s symptoms matched those of leukaemia, and that children with Down’s are between 10 and 30 times more likely to develop the blood cancer. Debbie called the NHS out-of-hours service and took Jacob straight to hospital in Swindon.
He was diagnosed with acute lymphoblastic leukaemia and transferred to the John Radcliffe Hospital in Oxford. Jacob spent eight weeks in hospital undergoing chemotherapy and was then sent home where he continued with the medication.
“He was very sick at times, tired and emotional,” said Debbie. “There were times when Jacob’s walking was affected by the treatment because of the weakness of muscles. I had to piggy back him upstairs to the bathroom and sometimes we had to use a wheelchair.”
At the end of the two-year maintenance treatment, Jacob, who was ten by then, was formally in remission and went back to school. But in February 2009 his symptoms returned and the family received the terrible news that Jacob had relapsed. “There was no stronger chemotherapy treatment available,” said Debbie. “Jacob was put on treatment to keep the leukaemia at bay but could not be cured. We were told he could have six months or, if lucky, two years to live.
The family organised a once-in-a-lifetime trip to Sicily with the grandparents where Jacob could eat as much Italian food as he wanted, and everyone could make memories.
“Jacob didn’t complain when sitting on the edge of the pool unable to get in the water because of his newly inserted Hickman line. Just being with everyone, having fun and eating was what made his world go round!”
Jacob died on October 16th 1998 at 12-and-a-half years old. Jacob’s parents raised money for Leukaemia UK as well as for a teenager room on the children’s cancer ward at The John Radcliffe. Jacob’s friend from primary school, Matt Rowell, 25, is running the London Marathon for Leukaemia UK in 2024 in memory of Jacob. “Throughout everything Jacob went through, his smile and bravery never faded,” said Matt. Matt Rowell is fundraising for Leukaemia UK (justgiving.com)
Case study – Henry Charles
(FULL CASE STUDY, PHOTOS AND INTERVIEW WITH TAJANA AVAILABLE ON REQUEST)
When Henry Charles first began to show symptoms of leukemia, it was lockdown time in the early summer of 2020. His mum Tajana (pronounced Tie-Anna) says that the changes in her ten-year-old son were so subtle that it took a long time to notice them.
“I put his symptoms down to all sorts of things, but never thought he was seriously ill until he was diagnosed,” said Tajana, 43, who lives with husband Chris and Henry’s younger brother George near Norwich in Norfolk. “He had temperatures on and off at night and bleeding gums which we thought were from wobbly baby teeth. But then he started to become much more withdrawn. He used to play a lot with George, who was eight at the time, but that slowed down. He also started losing weight which I thought was his age and that he was growing.”
A phone call to the GP resulted in an appointment at the children’s assessment unit at Norwich Hospital. Henry was given blood tests and an x-ray. Less than an hour later Tajana was told her son had acute lymphoblastic leukemia and would be immediately transferred to Addenbrooke’s Hospital in Cambridge to start treatment in intensive care.
“I will never forget that as we were getting into the ambulance I noticed one of the nurses giving me a sad look. Like she was feeling sorry for me. It really struck me. I wondered why she was looking at me like that. I now know why she did that – she knew what we’d have to go through and how hard it was going to be.
“Henry didn’t like being left alone so I didn’t shower for days. My bed was next to his but we were in a ward with three other children, machines constantly going off and nurses and doctors coming in all day and through the night. Sleep isn’t the thing that you think of. You don’t get a break at all.”