A desperate family have launched a race against time to raise £250,000 (~$321,700) for a revolutionary treatment, offering their only hope of blitzing the cancerous tumor which has invaded their son's body – leaving him just months to live.
At four years old, little Mehlyk Jokene, who was diagnosed with stage four neuroblastoma, a rare childhood cancer, in December 2018, has already defied doctors who gave him six months to live when they found the tumor in his abdomen.
But, despite eight grueling rounds of chemotherapy and one of radiotherapy, the cancer has spread to his legs, arms, chest, spine and pelvis, wrapping itself around his blood vessels – meaning his parents, osteopath Dianne, 31, and rehabilitation specialist Elly, 36, fear they may lose the son they adore.
The couple, of Whitton, south west London, who also have a daughter Zakiya, two, now feel their only hope lies in frantic fundraising through a JustGiving appeal, to pay for immunotherapy treatment, which is still being trialed in the UK, but is available at specialist centers in Spain and America.
Devoted father, Elly, a rehabilitation specialist, spoke passionately of his love for his son, saying: “Mehlyk is one of those children that you do not have to teach to be kind and caring, he just is.
“If he is playing with a group of kids he will always be the one to help push the others on the swings or give them toys."
He continued: “He is a lovely boy and just has this natural instinct to try and help."
Elly and Dianne first noticed Mehlyk was unwell in December 2018 after he started dragging his feet and lost his appetite, but, thinking it was a virus, they were relieved when he perked up after a few days.
“Around a week later he woke up again and was 10 times worse," said Elly.
“He wasn't eating and was still dragging his feet. He was finding it hard to go the toilet and seemed to be in pain," he continued.
“He just looked very poorly and I said to Dianne, 'I think this is serious.'"
Rushing him to St. Mary's Hospital in Paddington, west London, on December 29, 2018, medics performed blood tests, an ultrasound and an MRI scan, finding a large tumor in his hormone-producing adrenal gland, above the kidney.
Immediately admitted to London's Great Ormond Street Hospital (GOSH), he was diagnosed with stage four neuroblastoma – a rare childhood cancer of unknown cause which, according to the NHS, affects around 100 UK children each year and normally occurs in one of the adrenal glands above both kidneys, or in the nerve tissue.
“Hearing that was horrible. I wouldn't wish it on anyone," said Elly. “Our world turned upside down. Everything stopped. Everything had to stop and our focus became him and getting him better.
“The tumor was behind both his kidneys and it had started to wrap around his blood vessels."
Elly explained: “Within 48 hours he was having chemotherapy. He didn't really understand what was going on, but after a number of biopsies he started to realize that doctors in scrubs meant sending him to sleep and he would start crying.
“He was three years old at the time and he struggled to tell us what was wrong or where he was hurting.
“From around our fourth or fifth meeting with the doctors, they said most children will not make it past five years, but in Mehlyk's case it was six months. Obviously we were completely shattered."
“My wife was in bits. We completely broke down," Elly recalled.
“But he's still here and still fighting so we have not given up hope."
Mehlyk was put on a three-month course of induction chemotherapy as an inpatient at GOSH, which was followed by surgery in April to remove the tumor.
Tragically, they could only remove five percent as it had wrapped itself around his blood vessels and calcified, and after a three-week break, he was put on a higher dose of chemotherapy.
“He was on that for six weeks and he didn't cope well. It's a horrible thing. It gave him ulcers in his mouth and around his bottom," Elly said.
“All of that was taking its toll on such a small body. There were four other children going through the same type of chemo at the same time and three of them died. It was unimaginable."
“Mehlyk did begin to improve. He had more energy and tests showed that the spread seemed to have reduced," Elly added.
In August, medics started a six week round of radiotherapy aimed at blasting the original tumor, but by the time this was finished, it had started to grow again.
Then in October, Elly was giving Mehlyk a bath when he noticed a bump on his collarbone and an MRI scan revealed, to the family's horror, that the cancer had now spread to the little boy's neck, chest, femur, pelvis, spine and jaw.
“I would describe looking at the scan as like looking at aerial footage of bomb sites. There were these patches of bomb blasts around his abdomen, his arms and legs. Everywhere," Elly said.
“It was in his bloodstream and lymph nodes."
Now Mehlyk has started a further round of chemotherapy, his ninth, aimed at prolonging his life.
“Mehlyk's got so used to being in hospital, but he's allowed home for now, to be with his family," Elly said.
“He has such a special bond with his sister, that when he's in hospital he's always more excited to see Zakiya than he is me or his mum.
“When she visits she never wants to sit on the chair, she always wants to jump up on the hospital bed with him and will ask if he's okay. It melts your heart."
He continued: “She knows he is poorly because of being in hospital and hearing the screams and shouts, but she doesn't know what it is, and wouldn't be able to understand what's really going on."
After being advised by their consultants that the best treatment for Mehlyk would be a combination of chemotherapy and immunotherapy, which Elly says is still being trialed in the UK, the couple are now hoping to find help abroad.
They believe their best options are either the Memorial Sloan Kettering Cancer Center in New York or the SJD Barcelona Children's Hospital in Spain – one of the few European centers offering anti-GD2 immunotherapy treatment.
According to the Barcelona hospital's website, the treatment increases survival in patients with high-risk neuroblastoma by 20 percent, and 68 percent are disease free within three years of having it.
The couple also hope Mehlyk will be eligible for a vaccination which trains the immune system to destroy remaining cancer cells and is currently being trialed in the US.
“We want to do everything we can to defy this prognosis," said Elly, whose JustGiving page has raised £10,000 (~$12,900) in just a week.
“No parent wants to lose their child. Nobody brings their child into the world for this to happen. No one wants to feel so powerless," he said.
“We know Mehlyk is resilient, He's been to hell and back, but we have to keep faith that something will work.
“At the moment he's able to get up and play. He's still bubbly and has his appetite back."
“He gets pain, particularly in his arms and legs, but often he won't want to take pain relief. I'm not sure if he's trying to impress us by being tough but he never complains," Elly added.
“We estimate it will cost around £250,000 for the treatment and the vaccination, plus the extra expenses. We just need to raise that money as quickly as we can."
To donate visit www.justgiving.com/crowdfunding/mehlyksfight
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