Childhood Cancer Outcomes

Mark Tami Excerpts

Tuesday 17th October 2023 Commons Chamber

[Mrs Emma Lewell-Buck (South Shields) (Lab)]

Thank you, Sir Roger, for granting me this important Adjournment debate following September’s Childhood Cancer Awareness Month.

I know that many of us have experienced the suffering of a loved one with cancer, but there are very few of us who have had to endure the unimaginable pain of seeing your child suffer with cancer and, worse, losing a child to cancer. Yet cancer remains the leading cause of death by disease in children and young people, with 490 cancer deaths in the UK each year. That is 490 lives lost and families forever changed. The lack of a bespoke, stand-alone children’s cancer strategy leaves those children with aggressive cancers even more vulnerable.

In the short time I have this evening, I want to focus my comments on a little boy, a “tough cookie” from South Shields called Ethan Adams. Ethan attended the dentist with toothache in November 2020. The dentist treated him for a tooth infection, but Ethan was still not right, so he and his family returned to the dentist and Ethan was given some antibiotics. A week later, he developed a lump on the roof of his mouth. The dentist thought that this was an abscess because of infection and removed his tooth, but Ethan continued to be unwell. He was referred to an oral specialist at Sunderland Royal Hospital and, after an emergency MRI, the family were told that it was a benign tumour and to expect a follow-up call in a few weeks from the Royal Victoria Infirmary in Newcastle.

The very next day, the family received an urgent call asking them to head to the accident and emergency department as soon as possible. That is when the worlds of his mam and dad, Tracey and Mark, crashed. They were told that Ethan had an aggressive cancer and that it was eating up through his skull and pressing against his brain. Ethan was diagnosed with rhabdomyosarcoma, often referred to as RMS. A large tumour was present in his face, pushing through on to his brain. A large tumour was also found attached to his spine and traces were visible in his lungs and bone marrow.

His family were given a glimmer of hope when they were told that Ethan’s diagnosis was embryonal RMS, the lesser of two evils, and that the medics could shrink the tumours, but they were not sure that they could stop it coming back due to the aggressive nature of the cancer. Little Ethan had 32 days solid of chemotherapy and radiotherapy. He did not complain once. After going through so much, the family felt hopeful for a good result, but after an MRI they received the heart-breaking news that the cancer was buried in layers of his brain and it was terminal.

The family made sure that Ethan spent his final days carrying out his bucket list of all the places that he wanted to see and all the things that he wanted to do. This very determined independent little boy, even at his weakest and when losing his sight, would insist on climbing the stairs at home instead of being carried. On 5 August 2021, just a week after his ninth birthday, Ethan passed away at home, with his mam Tracey, his dad Mark, his sister Ellie and his brother Evan.

Ethan loved Yoda, Sunderland football club and the colour gold. He loved entertaining people and was a mischievous and funny kid with a big heart. Even when unwell in hospital, he was found sharing his toys and helping another little boy. He was all about friends and family, and talked about being a daddy himself one day. His school, Harton Primary, has named a sports hall after him and has buddy benches in each yard. His grave, which his brother calls his forever home, has on it “Ethan, a friend to all”. Ethan left a hole not just in his family’s and friends’ lives, but in our community. South Shields will never forget him.

Ethan’s family, in an effort to ensure that no one else ever has to go through what Ethan did, have become part of the charity Alice’s Arc, founded in memory of Alice Wakeling, who lost her life to RMS aged seven. The charity has created a community of families through Arcs. Alice’s Arc, Ethan’s Arc and all the other Arcs represent children who have had or are fighting RMS. The Arcs exist to find a cure, to find kinder treatments for RMS and to raise awareness. However, I gently say to the Minister that they should not need to exist; such charities exist because the state has failed them, and it continues at times to fail these children. As Mark said, it should not be left to charities to fund research.

The hon. Member for Gosport (Dame Caroline Dinenage) held the first ever debate on childhood cancer in this Chamber back in April 2022. I pay tribute to her and all hon. Friends and Members who took part in that debate. It was a rare moment of this House coming together, regardless of politics, in unanimous agreement that there needs to be a children’s cancer strategy combining early diagnosis, research funding and increased training for GPs and healthcare professionals.

[Mark Tami (Alyn and Deeside) (Lab)]

rose—

[Jim Shannon (Strangford) (DUP)]

rose—

[Mrs Lewell-Buck]

I will give way to my right hon. Friend first.

[Mark Tami]

I am a parent who was told the devastating news that my son had leukaemia, and he subsequently had to have a stem cell transplant. It is devastating news. Fortunately, we were lucky, but something I have campaigned strongly on is the fact that we address the physical side of the illness, but not the psychological support that those children need, and that they might need in later life as well. We need a more rounded approach. People should not have to go out there and seek that support as something extra; it should be part of the overall treatment path.

[Mrs Lewell-Buck]

I thank my right hon. Friend. I know he has spoken movingly before in this Chamber about his son Max. He is right that, for those who are lucky enough to recover from cancer, there is always an after-effect; it remains with them for life and there should be more support. I give way to my other hon. Friend.