Cancer in children is, thankfully, relatively rare compared to adults, with around 110 new cases diagnosed in the North East and Cumbria each year. This means new treatments for young patients need to be effective for what are, by their very nature, extremely specialist conditions, and why clinical trials provide a lifeline for children unfortunate enough to be diagnosed with the disease.

In 2016, the Sir Bobby Robson Foundation gave a £1million grant to fund four posts within the Innovative Therapies for Children with Cancer Unit, which has doctors, nurses and research staff based at the Great North Children’s Hospital and Newcastle University’s Wolfson Childhood Cancer Research Centre. The team is led by Consultant Paediatric Oncologist, Dr Quentin Campbell-Hewson, and is embedded within the hospital’s clinical service, meaning research is not separate from routine care of patients and nearly all young patients are involved in clinical trial studies. This ensures they receive the most up-to-date therapy possible and that progress continues to be made in developing better care. Through research, five-year survival rates for children with cancer have improved from about 30% in the 1970s, to around 85% today.

Given
Dr Quentin Campbell-Hewson.jpg
the importance of the trials, at the outset of the COVID-19 pandemic, Dr Campbell-Hewson requested and received permission to continue with them. Dr Campbell-Hewson says: “When the pandemic started, we didn’t know how much of a risk it would be for our patients and that was something we needed to discover. And we didn’t know to what extent our team would need to assist in other clinical areas or be redeployed.
“What we did know was that children’s cancer wouldn’t stop. It’s one of the leading causes of death for children and we can only combat this with the precise, timely and intensive therapies we use.
“With this in mind, we paused non-treatment studies but requested and received permission to continue both standard of care and new treatment studies.
“We’re particularly grateful that we could do this. It’s allowed us to continue building a portfolio of studies to support the treatment of patients who have exhausted standard therapies. These are studies that are only open in a few sites nationally or even internationally.”

The Sir Bobby Robson Foundation’s £1m funding enabled the Innovative Therapies for Children with Cancer Unit to expand by appointing a consultant level clinical fellowship post, two specialist nursing roles and a clinical study fellowship (early phase clinical trials). In the North East and Cumbria, treatment for childhood cancer is centralised, with every child and young person diagnosed coming into Newcastle for specialist treatment. Throughout the COVID-19 pandemic, individual treatment needs have continued to be met at the Great North Children’s Hospital and trials of new treatments driven forward. In fact, the Innovative Therapies for Children with Cancer Unit has recruited 20 patients to early phase treatment or biological trials.

Dr Campbell-Hewson continues: “Before COVID, we conducted phase 3 trials. So, that’s comparing modifications of previous best treatments and new treatment studies. Also, a range of studies into the biology of cancer, the experience of cancer treatment and attempts to improve the experience for our patients.“Crucially, during the pandemic, we’ve been able to keep studies open which include two trials treating children who can only access the drugs that are keeping them well through those trials. We’ve also been allowed to open a study with a drug that gives unique and complete responses to a collection of rare tumours.“These conditions have no other useful therapies but respond very well to our trial drug and we are currently the only site in the country offering this treatment.”

The Innovative Therapies for Children with Cancer Unit has also recruited patients to a national study monitoring COVID-19 infection in immunosuppressed children and Newcastle is the highest recruiting site after the main trial centre in Southampton. This revealed that COVID-19 infection rates are low and, thankfully, very rarely serious in children, even when they are severely immunosuppressed. Dr Campbell-Hewson adds: “It’s hard to overstate the importance of clinical trials for young cancer patients. We meet with children and young adults with cancer every day and we know what these new treatments mean to them.

“We’re basically the Sir Bobby Robson Cancer Trials Research Centre but for children and we’re making very good progress. But there’s still much more to be done and we’re hugely grateful to everyone who has made a donation to the Sir Bobby Robson Foundation and helped support our work.”

Sir Bobby Robson launched his Foundation in 2008 as a fund within the Newcastle Hospitals Charity. It has gone on to raise over £15m to help find more effective ways to detect and treat cancer. Working within the NHS and in partnership with other leading charities and organisations, the work funded directly benefits cancer patients in the North East and Cumbria and plays a significant role in the international fight against the disease.

For more information, or to donate, please visit sirbobbyrobsonfoundation.org.uk


Rebecca Henderson’s story:


Rebecca Henderson from Billingham is 15 and has been receiving cancer treatment for seven years. She lives with Mum, Tracy (a primary school teacher), Dad, Paul (a plasterer) and 12-year-old brother, Jake.

Research nurses giving trial drug to Rebecca


Three weeks after her eighth birthday, Rebecca Henderson from Billingham was diagnosed with rhabdomyosarcoma, a rare form of cancer found in the muscles, bones and soft tissue areas.

It was a great shock to Rebecca and her family and in that instant her life changed. Previously a very active and sporty child, Rebecca now had to face lengthy cancer treatment, hospital stays and surgery. Now 15, she has faced cancer four times in her young life, each time hoping it has been beaten.

Mum, Tracy, says: “Rebecca was first diagnosed in 2014 and again in 2017, 2019 and 2020. It’s really hard on her and every time she completes her treatment, we’re all hoping to hear the ‘all clear.’ We want her to have her life back and have freedom from treatment and hospitals.

“Like everyone, we were locked down in 2020 and Rebecca was just finishing her cancer treatment after a diagnosis the previous year. She became poorly with shingles and her legs swelled up. That’s when we received the bad news that the cancer had returned.

“So, all of the treatment for this fourth round of cancer has been during Covid and it’s certainly added additional stress for all of us. We’d read in the news about cancer trials and treatment being cancelled and were fearful it would impact on Rebecca.

Rebecca Henderson Jan 2020 PET scan near end of 3rd cancer battle.jpg


“Some of the usual paediatric oncology nurses were moved and we were concerned about the future. But every time we saw Dr Quentin, he reassured us that Rebecca’s treatment would go on and, thankfully, it’s proving really successful at the moment.

“We all of us feel like the treatment she gets is truly cutting-edge and we know, as bad as things are, that we’re getting the best help we can. I think Rebecca’s now been on eight different clinical trials.

“The last three times Rebecca has needed cancer treatment, she’s taken part in brand new chemotherapy trials, often being the first person on our ward to try the drugs. Many of the trial drugs Rebecca’s tried, including chemotherapy and anti-sickness drugs, have proved effective and she’s really glad other patients will now be benefitting from them, too.

“Throughout all the problems caused by Covid, the Great North Children’s Hospital staff have been amazing, they always are. It’s true that there’s been an extra layer of stress caused by the pandemic but everyone at the hospital goes above and beyond to help reduce that. Yes, everyone has to wear masks, but we always know there are smiles behind them.”

Rebecca says: “When the first national lockdown happened, I was recovering from cancer surgery. Although I was glad to be safe shielding at home, it was the strangest experience of my life as we couldn't leave home. I was only allowed in the garden and we had to have all of our shopping delivered.

“After not leaving our house for five months, it felt very scary to go back to hospital. I was worried I might catch Covid and I’ve never seen the hospital so empty. The corridors were eerily quiet.

“One of the biggest changes in my treatment since Covid, is that if I get temperature, which can happen during my chemotherapy treatment, I have to go to A&E to be checked and do a Covid test rather than being admitted straight to my cancer ward.

“During different treatments for my cancer, I’ve taken part in eight research trials. Most trials have been easy but some have been difficult. One trial I did tested an anti-sickness drug on children. It really helped me and now children all over the world can use it, too.”

To donate, please visit sirbobbyrobsonfoundation.org.uk

Rebecca Henderson Oct 2020.jpg