Desperate parents of four-year-old boy with cancer whose been given four weeks to live say he’ll die in lockdown if they don’t raise £250,000 for last- chance treatment in Spain
- Loving parents Dianne and EllyJokene, of Whitton, want to save their son Mehlyk
- The four year old is battling a rare form of cancer, was given four weeks to live
- Dianne, 31, and Elly, 36, want to raise funds to go to Spain for immunotherapy
- Have raised £50,000 and need £250.000 total or say will die in lockdown
A desperate couple whose four-year-old son may spend the rest of his life in lockdown – after being given as little as four weeks to live – are asking kind-hearted strangers to help raise the £250,000 they need for ‘last chance’ immunotherapy to treat his cancer in Spain.
Battling stage four neuroblastoma, a rare childhood cancer diagnosed in December 2018, doctors say little Mehlyk Jokene, of Whitton, south west London, could have just a few weeks left, because the disease has spread throughout his body.
But his adoring parents, osteopath Dianne, 31, and rehabilitation specialist Elly, 36, have already raised £50,000 and insist that if they can fly their son to the Spanish city of Barcelona in the next two weeks, to be assessed for an immunotherapy trial, that he could still pull through.
Without the potentially life saving treatment, Dianne and Elly said Mehlyk could die during the UK lockdown.
Parents Dianne, 31 and Elly Jokene, 36, from Whitton, South London, are trying to rase enough funds to move their son Mehlyk to Barcelona so that he can receive a live saving immunotherapy. Battling stage four neuroblastoma, a rare childhood cancer diagnosed in December 2018, doctors say little Mehlyk (pictured) could have just a few weeks left, as the disease has spread throughout his body
Mehlyk’s parents said they are heartbroken at the thought of living without their little boy (pictured in hospital during treatment)
Dianne, who also has a daughter, Zakiya, two, and a baby boy, Caleb, four months, with Elly, said: ‘A life without Mehlyk doesn’t bear thinking about. Our hearts are broken.
‘We’ve been told that without treatment he has four to eight weeks left to live.
‘Although we were hopeful that the disease had stabilised, tests two weeks ago showed progression in his skull, chest, lungs and windpipe.
‘If we can get to Barcelona, doctors will assess him and see if they can treat him with ICE chemotherapy and then immunotherapy, which is the best hope for him. It’s his last chance.
Elly and Dianne Jokene, (pictured) said going to Barcelona to receive chemotherapy and immunotherapy was Mehlyk’s last chance
‘We’ve been isolating since the beginning of March, although we had been careful about going out before then because he is very vulnerable to infection.
‘We’re doing our best to keep Mehlyk’s spirits up and keep him as happy as possible, but he is in pain as the disease is in his spine as well and, watching him just sitting there and not running around, causing havoc, is making me an emotional wreck.
‘Thinking of him spending his last few weeks in isolation, under lockdown, is just unbearable.’
Mehlyk has already defied doctors’ expectations, after being given six months to live when he was first diagnosed with stage four neuroblastoma in December 2018, when a tumour was found in his abdomen.
But, despite 13 gruelling rounds of chemotherapy and one of radiotherapy, the cancer still spread to his legs, arms, chest, spine and pelvis – wrapping itself around his blood vessels and progressing even further in the last two months.
Mehlyk was given six months to live when he was first diagnosed in December 2018, but he pulled through (pictured in hospital after an attempt to surgically remove the tumour in April 2019)
When Mehlyk got sick, Dianna and Elly initially put it down to a virus, but grew concerned when he did not improve after a week (pictured in hospital last month after exams to see how the cancer had progressed)
Blood tests, an ultrasound and a MRI taken on December 29 2018 found a large tumour in Mehlyk’s hormone producing gland, above his kidneys (pictured in hospital on oxygen in March. The poor boy burst a blood vessel in his right eye after a violent coughing fit )
His parents first noticed something was wrong in December 2018, after Mehlyk started dragging his feet and lost his appetite, which they put down to a virus.
‘Around a week later, he woke up ten times worse,’ said his dad 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 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 and an ultrasound and an MRI scan, finding a large tumour in his hormone-producing adrenal gland, above his kidneys.
Dianne, who just gave birth to another baby boy, said she did not want to say ‘hello to one son and goodbye to another’ (pictured with Mehlyk)
His parents first noticed something was wrong in December 2018, after Mehlyk started dragging his feet and lost his appetite, which they put down to a virus. (pictured with an oxygen mask in hospital after contracting a chest infection)
Immediately transferred and 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 tumour was behind both his kidneys and it had started to wrap around his blood vessels.
‘Within 48 hours, he was having chemotherapy. He didn’t really understand what was going on, but after a number of biopsies examining the tissue more closely, he started to realise that doctors in scrubs meant sending him to sleep and he would start crying.
‘He was only three then and 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 the prognosis was six months. Obviously, we were completely shattered.’
Given a three-month course of induction chemotherapy as an inpatient at GOSH, followed by surgery in April 2019 to remove the tumour, tragically, only five per cent could be taken away, as it had wrapped itself around his blood vessels and calcified, or hardened.
Little Mehlyk pulled through a total of 12 rounds of chemotherapy to stop cancer, but it came back and spread throughout his body (pictured in his wheelchair in hospital). Right: In hospital with Ely during chemotherapy
Elly said treatment for Mehlyk’s cancer was grueling, leaving him with ulcers around his mouth and bottom (pictured in hospital during treatment)
Following a three week break, so his body could recover, Mehlyk was put on a higher dose of chemo for six weeks, which knocked him for six, according to his dad.
‘It’s a horrible treatment,’ said Elly. ‘It gave him ulcers in his mouth and around his bottom.
‘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.
Elly said that there were four children going through the same treatment as Mehlyk, three died (pictured: Mehlyk in hospital)
After the grueling chemotherapy treatment, Mehlyk, pictured in hospital, started to get better, but the cancer grew back more aggressively
‘Mehlyk did begin to improve. He had more energy and tests showed that the spread seemed to have reduced.’
In August, medics started a six-week round of radiotherapy – aimed at blasting the original tumour – but, by the time the treatment finished, it had started to grow again.
Then, in October 2019, Elly was bathing Mehlyk, 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.
By October 2019, an MRI revealed that the cancer had spread to the little boy’s neck, chest, femur, pelvis, spine and jaw (pictured at the hospital during Easter)
Pictured: Mehlyk’s bandages after an operation to remove the tumour in April 2019. Unfortunately, only 5 per cent of the tumour could be taken out
Mehlyk spent months in hospital over the last two years in order to complete his chemotherapy treatment (pictured then)
‘Seeing the scan was like looking at aerial footage of bomb sites,’ said Elly.
‘There were these patches of bomb blasts around his abdomen, his arms and legs. Everywhere.
‘It was in his bloodstream and lymph nodes.’
Mehlyk started a further round of chemotherapy, his ninth, aimed at prolonging his life.
Since then he’s had a further four rounds of chemotherapy.
But tragically, two weeks ago, tests showed that the cancer had progressed further in his skull, lungs and windpipe.
Pictured: Mehlyk as a toddler. Dianne explained her son was now back at home during lockdown and that the family was making the most of their time together
Pictured: Mehlyk looking at his chemotherapy equipment during treatment in hospital last summer
An adorable picture of Mehlyk as a baby before his diagnosis. The boy is due to turn five on Mary 25
Pictured: Mehlyk and his sister Zakiya hugging in the sunshine. Dianne and Elly are desperate to see their son grow up
His mother said any further NHS treatment would merely extend his life by weeks.
With Mehlyk now home and isolating because of Covid-19, the family say his only hope comes if they can fly him from London’s Heathrow Airport to Spain either this week or next, to be assessed at the SJD Barcelona Children’s Hospital – one of the few European centres offering anti-GD2 immunotherapy treatment.
If eligible, Mehlyk will have ICE chemotherapy, an aggressive chemotherapy regime to reduce or at least stabilise the disease, followed by the immunotherapy, which involves antibody treatment, aimed at destroying the neuroblastoma cells that survived chemotherapy.
Dianne explained: ‘We have raised £50,000, but the chemotherapy alone will cost £160,000, before they can even start him on the antibody treatment.
Pictured: Mehlyk cheekily smiling at the camera while having a sip of water in a waiting room
‘People are allowed to fly for medical purposes, so we are hoping to go this week – or, at least, as soon as possible.
WHAT IS NEUROBLASTOMA?
Neuroblastoma is a rare cancer that affects children and usually starts in the abdomen.
Around 100 children, who are typically under five, are diagnosed every year in the UK.
The disease affects approximately 800 new children annually in the US.
In around half of cases, neuroblastoma spreads to other parts of the body, particularly the liver and skin.
Neuroblastoma’s cause is unclear. There may be a family-history link.
The main symptom is usually a lump in the abdomen, which may cause swelling, discomfort or pain.
If the disease affects the spinal cord, it can lead to numbness, weakness and loss of movement in the lower part of the body.
Treatment depends on how advanced the cancer is and the risk it will return after therapy.
Surgery, and chemo and radiotherapy, are commonly used.
Source: Cancer Research UK
‘A parent should not have to bury their child. We’ve heard stories about families who’ve been unable to have proper funerals because of Covid-19. I’m trying not to think about it, though. Instead, all our hopes are pinned on getting Mehlyk to Barcelona.
‘I’ve only just had a baby boy. I don’t want to be saying hello to one son and goodbye to another.
‘I want Mehlyk to be the best version of himself, to grow up as a great brother and a wonderful son. To have that taken away feels so cruel.
‘We’re trying to stay positive, spending time in the garden together and playing lots of games on the Nintendo.
‘Staying at home is the least of our problems. I would happily stay at home knowing my son is happy and healthy.’
But all the couple really want is a chance to make Mehlyk, who turns five on May 25, well.
Elly added: ‘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.
‘We know Mehlyk is resilient, He’s been to hell and back, but we have to keep our faith that something will work.’
To donate, visit Dianne and Elly’s GoFundMe page.
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