Childhood Cancer Outcomes

Rob Roberts Excerpts

Tuesday 26th April 2022 Commons Chamber

[Rob Roberts (Delyn) (Ind)]

Jordan Giddins, or Giddo to his friends, from Flint in my constituency was 18 years old when he died, and tomorrow marks the fifth anniversary of his passing. At age 11, he became unwell with a mystery virus, and little did he or his family know that it would be the start of a seven-year battle with a deadly illness. It was determined that Jordan had HLH, a very long name that I will not mispronounce, which is a very rare blood condition that usually impacts infants and young children. Jordan attended Alder Hey Children’s Hospital in Liverpool and had various courses of steroids and chemotherapy, which seemed to be working. He was eventually able to return to school, catching up on the time that he had missed, and starting his life once again.

Nine months later, sadly, he suffered a relapse which the doctors said could only be cured by a bone marrow transplant. At this point, he was just 13 years old. His sister Beth was 16 and she was a match. No greater gift could a sister give to her brother than a life-saving donation. But four years later, it was something as innocuous as having a slight pain in his shoulder that got worse that eventually led to a scan which uncovered a golf- ball-sized mass on his ribs. A further biopsy was carried out which confirmed that it was Ewing sarcoma, another very rare form of cancer which mostly affects children and young people. It all started again, even more intense than before. The regime for the treatment of Ewing sarcoma, as my hon. Friend the Member for Gosport (Dame Caroline Dinenage) said, is more than 50 years old. Mandy, Jordan’s mum, is a nurse practitioner. In her words:

“I’ve never seen anyone suffer like he suffered with this treatment”.

It is basically giving adult-level chemotherapy to children, and their bodies just cannot cope with it.

Jordan celebrated his 18th birthday hooked up to a drip in hospital. Still upbeat, as was his way, he was making so many plans for the upcoming year—a music festival and a lads’ holiday with his friends—but over the Christmas period in 2016, he became unwell again, and the relapse was confirmed in January. There was no relapse protocol and, after a couple of experimental treatments, he passed away on 27 April 2017.

Mandy talked about her anger that we are still using treatment protocols from 50 years ago on children. She paid tribute to staff in Glan Clwyd Hospital in north Wales, Alder Hey Children’s Hospital in Liverpool and the specialist cancer centre in Clatterbridge on the Wirral.

As my hon. Friend mentioned earlier, the problem is one of research. They say that childhood cancer is rare, and it is. Childhood cancer accounts for less than 1% of all cancers in the UK. It is easy to talk about in those terms—1% is nothing—but that 1% is 1,800 new cases diagnosed every year in children aged between 0 and 14: 1,800 sons and daughters who go through devastating and punishing treatments, and 1,800 families with constant anxiety about whether their son or daughter will become part of those statistics. It is one child in 500. Suddenly, it does not seem so rare at all.

Jordan’s passing did not end his story. Jordan—or Giddo, as he was known—had the gift of brightening up the lives of the people with whom he came into contact. The charity, Giddo’s Gift, has been set up in his name to provide gifts to make the lives of people suffering as he and his family did a bit more bearable. Since 2018, Giddo’s Gift has granted 176 financial wishes along with 23 bereavement grants. That is £112,000 in total, and I am proud to report that the local community in Flint has raised £263,000 and counting. My plea to the Minister, who I know is extremely big-hearted and cares deeply about this issue, is to sit with these families, hear their stories and make sure that no parent ever has to bury their child again.