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After the worst 12 months of their lives, they were told their boy was cancer free. But for victims of this rare childhood cancer, that is often not the end of the story. Relapse rates are high, sometimes as high as 60 percent. And the Scotts were not prepared to gamble that their son would be one of the lucky ones.
They trawled the internet for answers, and discovered a New York hospital had come up with a vaccine its doctors believed could stop neuroblastoma returning.
But even if Liam passed the initial tests – and could bypass the Covid travel restrictions – his groundbreaking treatment would cost the family £232,000, an impossibly huge sum. Undaunted, the Scotts started a crowdfunding campaign, and in under four months they had reached their target.
After a course of seven vaccine doses, Liam is now a happy, healthy cancer-free five-year-old. But Claire and Mike are still fighting – to get other children the treatment that saved their son on the NHS.
And yesterday, accompanied by her MP Tom Tugendhat, Claire was invited to discuss her campaign with the Secretary of State for Health, Sajid Javid.
“I told Mr Javid that this vaccine simply must be made available free of charge on the NHS to all the children who are suitable – to give them all the same chance of survival as Liam,” she said last night.
“He seemed extremely sympathetic to our campaign. He started the meeting by saying he had already researched the vaccine, and has now asked officials in the Health Department to look into it, too.
“He will get back to me for more discussions when he has heard back from his people. He also said he wants to meet Liam.
“Ideally he wants to get the vaccine to the UK as soon as possible. He said he has learned a lot about vaccines during the Covid crisis and has now realised they have more applications than we have previously known about. I am incredibly encouraged, but I will keep on the case.”
The nightmare began for the Scotts, of Edenbridge, Kent, in July 2019, when Liam’s cancer was diagnosed the day after his little sister Kylie was born.
Claire says: “I’d noticed that Liam seemed restless and was suffering from night terrors. But after his nursery school contacted me to say he seemed tired and was lacking energy I took him to our GP.”
He had undergone a number of tests, and Claire, who had high blood pressure, insisted on leaving the maternity ward against medical advice to be with him.
‘Mr Javid seemed extremely sympathetic. Has asked to look into vaccine’
“That day, we were told that his cancer was already at stage three, and it was so aggressive, he had only a 40 percent chance of survival. It was a dreadful shock. He had to start chemo that very night.”
Over the next year, Liam spent more than 100 days in hospital, undergoing a raft of different treatments. But his family were already thinking about what would come next. Claire says: “The nature of neuroblastoma meant there was a risk of the cancer coming back, which could have devastating consequences. So as he neared the end of his conventional treatment, we did a lot of research, and decided the new cancer vaccine in New York was our only option. So we set about fundraising.” Footballer Charlie Holmes, formerly with Dagenham and Redbridge FC, ran 140 miles in 14 days, all live-streamed on Instagram, to provide a massive boost for the appeal.
After hearing about Liam on Twitter, ex-Liverpool player Pele Reina also donated £2,000. Claire recalls: “We were amazed and thankful when the money came in so quickly. We just couldn’t believe the generosity of people. When our target was reached, I cried with happiness.”
The new vaccine treatment trains the patient’s immune system to identify and destroy any neuroblastoma cells remaining in the body after chemo.
It had to be given at New York’s Memorial Sloan Kettering Cancer Center within 45 days of Liam’s last conventional treatment, which was extremely hard to achieve during lockdown, but somehow Claire and Mike made it happen.
The Scott family then flew back and forth to New York over the course of the next year – having gained special medical exemption from the US government’s Covid-19 travel ban.
Claire continues: “Thankfully, although Liam’s immune system had been compromised by all his treatment, he managed to avoid Covid during lockdown, so he remained well enough to have all the jabs he needed. He is now being monitored by Royal Marsden Hospital in Sutton, London, with three-monthly checkups, but he remains cancer-free and has been able to start primary school.”
Now Claire and Mike, who works for a financial services firm, are determined that other children with Liam’s condition should be able to get the same chance of a full and lasting recovery.
Neuroblastoma affects about 100 British youngsters every year, and it’s estimated that half of them could potentially benefit from the vaccine. Claire says: “I’m doing all I can to raise awareness of the vaccine and how it can help children with neuroblastoma, which is a very hard cancer to treat.
“I want the vaccines to be made available to every suitable patient. At the moment it can only be provided to families who are able to crowdfund, which can feel impossible when you are at such a difficult time.
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“Appealing for donations for a child who is fighting for their life, as parents you feel this helplessness, because you are talking about such enormous sums of money.
“It’s so traumatic to have a little one with cancer. Nobody is really in the right headspace to fundraise.”
Claire believes that Liam responded so well to treatment partly because his nursery, Ide Hill Pre-School, raised the alarm when it did.
“Their input made me take him to the doctor earlier than I might have done otherwise. When he was diagnosed, his cancer was already advanced. Had it been found any later, he might not have survived.
“Throughout Liam’s treatment the nursery were fundraising for us and making sure that we were well taken care of, always checking in on us. How can I ever thank them enough?”
She recently became chairman of the nursery (which Kylie now attends) and is currently writing a book about Liam’s journey back to health.
NEUROBLASTOMA – THE FACTS
NEUROBLASTOMA is a rare cancer that is almost always found in babies and children under five. It develops from the cells left behind from a baby’s development in the womb. The cause is unknown.
There are very rare cases where siblings are affected, but generally the disease doesn’t run in families.
Symptoms can include a swollen, painful tummy; constipation and difficulty passing urine; a lump in the neck; breathlessness and difficulty swallowing; fatigue, loss of energy, and difficulty walking.
For more information, go to www.neuroblastoma.org.uk
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