Neuroblastoma Treatment

Peter Gibson Excerpts

Thursday 15th June 2023 Commons Chamber

[Peter Gibson (Darlington) (Con)]

It is a privilege to have secured this debate on tackling neuroblastoma. I have been seeking the debate ever since I had the pleasure of meeting my constituent Mark Bell and his family at a fundraising event last year. I am pleased that Mark, Luke’s father, and, Carol, Luke’s grandmother, are able to be with us in the Gallery for the debate. I want to share with the House their story and how they came to establish their charity, the Team Luke Foundation, which is ably contributing to the battle against neuro- blastoma. I would also like to thank Solving Kids’ Cancer UK for reaching out to me in advance of the debate and sharing a briefing outlining their ideas on how we can move forward in the treatment of neuroblastoma.

The Team Luke Foundation was established as a registered charity by Mark and his wife Rebecca following the death of their inspirational eight-year-old son, Luke, who sadly died from neuroblastoma in December 2018, a mere 21 months after his original diagnosis. Luke was a typical young boy. He loved gaming, rugby, school, playing with his friends and, most of all, spending time with his mum, dad and big sister Alysha. He was incredibly active and full of energy.

I want to share an insight into Luke’s diagnosis journey, which led up to his family hearing those awful words, exactly six years ago, that his symptoms were “suggestive of cancer”. Over the preceding six months, Luke had started to have one or two unspecific viruses that seem to go around every school, at any time of the year. His symptoms amounted to a temperature, tiredness and not being that fussed about eating. They usually improved after a lie down in front of the telly, watching his favourites, but they never really bothered him.

Between October and December 2016, Luke started to look a little bit pale from time to time. Just before Christmas, his family had a trip to Kielder, in Northumberland, and the family remember occasions when Luke was a bit pale and tired, even asking for a carry one day, but it did not stop him doing a bit of ice skating, tobogganing and general mischief-making. His parents have looked back on photos of him from Christmas that year, to see whether there was something specific they might have missed, but nothing pinpointed anything that would have caused them any real worry.

By early 2017, things started to take a turn for the worse. Luke looked a bit paler and a few random symptoms started to cause some concerns. There were several conversations with Luke’s teachers about him getting more tired in class, even falling asleep in a couple of lessons. He also developed a slight limp and, from time to time, he complained of pain in his leg, and asked his dad to be carried on his shoulders for the walk to and from school.

Luke’s leg pain started to become pretty much constant, especially in the morning. He also had a visit to the local hospital after a phone call from the school one day to say that a large bump had appeared on his forehead. There was no known explanation for the bump. His family did not know until much later that it was a sign of a tumour on his skull.

In March 2017, Luke visited Center Parcs in France with his dad. Although his appetite was poor and his energy levels were low, he enjoyed the trip. On returning home, things moved quickly. An urgent visit to his GP resulted in him giving samples of blood. That was followed with a requirement to attend the local hospital for more tests. At around 2 am on the morning of 7 April 2017, his family were told the tests were “suggestive of cancer”, and Luke was taken by ambulance to the Royal Victoria Infirmary in Newcastle.

With the knowledge that it was cancer, Luke’s parents did at least feel reassured that he would be starting treatment immediately. The initial diagnosis was of acute lymphoblastic leukaemia, which had a better prognosis than many other childhood cancers, but that was then was changed to acute myeloid leukaemia, which had a much poorer survival rate. The family had to wait for further tests, and almost a week later the diagnosis was finally confirmed as high-risk neuroblastoma.

Later tests identified a particular characteristic of Luke’s cancer genes known as MYCN. This meant that he fell into the ultra-high-risk category. To add to the mix, they learned that boys and older children generally had a worse outlook. Knowing how much time had passed since their concerns were first raised with the appropriate medical professionals has added to the family’s heartbreak.

Neuroblastoma is a rare cancer that affects children. It mostly affects children under the age of five years, with fewer than 100 between the ages of 0 and 14 being diagnosed each year in the UK. Very rarely, it can develop in older children, teenagers and adults. Seventy per cent. of children with neuroblastoma survive for five years or more after being diagnosed. At present there are no known lifestyle-related or environmental causes of neuroblastoma, so it is important to remember that there is nothing that Luke or his parents could have done to prevent it.

Following his diagnosis, Luke commenced a gruelling course of treatments, including high-dose chemotherapy, extensive surgery to remove the tumour, radiotherapy, and immunotherapy. Unfortunately, routine tests in spring 2018 showed that he had relapsed. In September he was accepted on to a clinical trial, but tests as part of the trial revealed that the cancer had spread aggressively through his body. His family then received the devastating news that his cancer was terminal. Determined not to give in, Luke was accepted on to a clinical trial in Barcelona, due to start in January.

Sadly, Luke never made it to Barcelona. He passed away on 23 December 2018. He was eight years old. To lose any family member is devastating, but to have a child taken so prematurely—it is hard to imagine the pain that Luke’s family went through then, and they are still grieving today. Luke was their brown-eyed, blond-haired boy who filled their hearts with joy and made them smile every single day, and I know that he will not be forgotten. It is truly a privilege to be able to put Luke’s story on the record in the House, and to play a part in ensuring that his memory lives on.

In the wake of Luke’s death, his parents set up the Team Luke Foundation to create a legacy for him. In the words of his father Mark:

“It is very much in the spirit of his personality. Luke was very inquisitive and had a great interest in the treatment he was going through. He was also a very helpful boy, who didn’t like to see any sadness or suffering. He inspires everything we do.”

Since Luke’s illness, his parents have heard of many children who have had similar experiences of late diagnosis, Although neuroblastoma is a rare disease, the survival rate is comparatively very poor, so catching it early is key. The foundation’s aims and objectives are to make more people aware of this childhood cancer, to help parents access key services and information, to provide practical support, and to fund research to improve diagnosis and develop kinder treatments. The foundation has produced information posters for schools, which will be distributed to schools in Darlington and further afield.

If you will permit me, Madam Deputy Speaker, I will list the signs to spot cancer in children: headaches; vision issues; sudden or persistent weight loss; changes in skin complexion; unexplained bumps, lumps or bruising; recurring high temperatures and night sweats; frequent tiredness and low energy levels; persistent or intermittent pain; and aching limbs and limping.

I am fully supportive of Team Luke’s work, and want to praise it unreservedly for keeping Luke’s memory alive and for the important work it is doing to tackle this awful cancer. A number of my colleagues have raised neuroblastoma during this Parliament. Last year my hon. Friend the Member for South Cambridgeshire (Anthony Browne) and my right hon. Friend the Member for Tonbridge and Malling (Tom Tugendhat) both shared powerful stories about children in their constituencies who had suffered with neuroblastoma, during a debate on childhood cancer outcomes. I was also very sad to hear that the hon. Member for Batley and Spen (Kim Leadbeater), who sadly could not attend this debate, has a constituent whose daughter died from neuroblastoma earlier this month. She has written to the Prime Minister to encourage him to do all he can to pioneer new treatments for this awful disease. I want to add my voice to that call. Will the Minister press our right hon. Friend the Prime Minister to respond to the points that the hon. Lady has made?

Luke, like many children, was taken too soon by the awful disease that is cancer. I want to thank the Minister for listening, and end by leaving him with these questions. Will he work with me and other across the House to speed up and improve the diagnosis of neuroblastoma? Will he do all he can to increase the pace of research into treatments that are more effective at treating neuroblastoma? And will he do all he can to ensure that his Department does all it can to raise awareness of neuroblastoma?