In loving memory of William Le Fort

We are devastated to share the news that brave William has sadly passed away.

William battled every day for more than 9 years, fighting the horrible and aggressive disease we know and despise - neuroblastoma.

His father, Douglas, says: “We miss him so much, but we know he is at peace.”

William's story

William is a typical 12-year-old boy – he loves computer games, Power Rangers and dragons. A fun day for William would involve playing on the trampoline with his sister, Elspeth and best friends, a family bike ride (joined by his black Labrador, Annie) and creating a world on Minecraft Multiplayer. He’s enjoying life and dreaming of the future but, at the same time, fighting for it.

When William was four years old he was diagnosed with high-risk neuroblastoma, and he’s been through intensive treatment to fight it. He’s achieved remission twice but relapsed three times, most recently in April 2018. He’s now accessing treatment which will hopefully prevent a further relapse.

William had responded amazingly well to treatment after his second relapse – two cycles of ICE, an incredibly aggressive chemotherapy regime, followed by an antibody with chemotherapy combination. He regained remission and took “a large leap across the pond” to New York for the Bivalent Vaccine clinical trial at the Memorial Sloan Kettering Cancer Center.

He received four out of the seven vaccines and the family returned to the UK for their reassessment scans, but devastatingly they showed his disease had returned. It means that William no longer meets the protocol criteria and has had to come off the vaccine trial.

The family were supported by their clinicians in both the UK and the US to research treatment options and travelled to Barcelona where William received Hu3f8 antibody treatment at the Sant Joan de Deu Children’s Hospital – the aim to detect and destroy neuroblastoma cells that have survived chemotherapy or radiation therapy.

The treatment had some effect but a decision was taken to return to state of the art treatment in the UK, which if successful could lead to other innovative options abroad.

“A mother and father’s love for their child has to be the most tremendous force. From the depths of misery, we will scale walls, fight ferocious beasts and defend and protect our most sacred being… our child”, say William’s parents, Douglas and Gillian. “We no longer ask how and why. Instead, we use every ounce of our energy to help William fight this aggressive disease”.

In the month leading up to William’s diagnosis, he had been waking in the night sweating and seemed to be having painful dreams. Douglas and Gillian took him to the doctors several times and were told that he had constipation and growing pains. Then, all of a sudden William was struck down with intense and debilitating agony.

“We knew this was not growing pains and William was taken to a London Hospital,” says Douglas.

Following a series of tests, Gillian and Douglas were told the devastating news – their son had high-risk neuroblastoma. They questioned “every dimension of this universe as to how and why a small child could get this dreadful disease…”
Neuroblastoma is a particularly aggressive childhood cancer and the most common cancer outside the brain in children under five years old.

William started frontline treatment at the Royal Marsden Hospital and the Royal Children’s Hospital in Melbourne – Gillian’s family are from a small seaside town in Victoria. While William was treated in Australia, his sister was looked after by her Aussie Grandmother and Douglas had to continue to work in the UK. It was difficult for all the family but Douglas knew that his children were receiving the best care and support.

William responded very well to his treatment and was in complete remission after the initial chemotherapy. He then had a transplant, radiotherapy and immunotherapy. After immunotherapy, the family came back to the UK and for the next three years, childhood and growing up took a front seat. However, regular scans and physical and psychological issues reminded them of past traumas.

Then, following a routine scan, the family were spiralled back into the nightmare. William had relapsed. “How can we go through all that treatment again? Do we have the energy?” questioned Gillian and Douglas.

William started receiving chemotherapy again and did eight cycles of Cyclophosphamide and Topotican. To the amazement of his family and his consultants, he went back into remission after the third cycle alone. He then had eight cycles of Temolozide. “Perhaps too much of one drug and not too many other options”, says Douglas, “William relapsed once more. At this stage, we knew we had to seek options outside the NHS.”

He had responded amazingly well to treatment after his second relapse – two cycles of ICE, an incredibly aggressive chemotherapy regime, followed by an antibody with chemotherapy combination. It was during this time the family initially launched their appeal campaign to raise funds for the Bivalent Vaccine clinical trial at the Memorial Sloan Kettering Cancer Center. Once the UK treating team were able to confirm William had regained remission, following his antibody with chemotherapy and with funds secured, the family took the “large leap across the pond” to New York.

William’s fundraising campaign

Relapse rates for high-risk neuroblastoma are high, and the survival rate for relapsed neuroblastoma is less than 10%. This statistic worsens with every relapse. Relapsed neuroblastoma is particularly challenging to treat and there are limited options to treat it; all of which exist in the form of clinical trials, some in the UK and some abroad. Many families just like William’s will choose for their child to access these experimental therapies in the hope that they will clear disease or help keep the cancer away.

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