When little Raffi Starkowitz started to ‘walk a little wobbly’ his parents thought he may have an ear infection – then they were told the four-year-old had a rare brain cancer.
And now, in a tragic double blow for the family, Raffi’s mum Nicky is having to navigate his illness and her own.
The youngster was in April diagnosed with Group 3 large cell anaplastic medulloblastoma, an extremely rare subtype of the most common malignant brain tumour found in children.
He has since been under the care of Great Ormond Street, where he underwent a 10-hour operation to remove a large tumour as well as months of intense treatment.
But the family, from Bushey, Hertfordshire, was dealt another blow after mother-of-three Nicky was diagnosed just weeks ago with stage three breast cancer, for which she has had a mastectomy and is also now undergoing chemotherapy.
While Raffi’s latest scans have been positive, his family has been warned the risk of relapse is extremely high and there are no preventative treatments available in the UK.
They have now been thrown a lifeline by Penn State Children’s Hospital in Hershey, Pennsylvania, which has accepted Raffi onto a new trial using DMFO drugs.
DFMO – short for difluoromethylornithine – has shown to be extremely promising in children with high-risk cancers like Raffi’s to remain in remission.
His parents Neil and Nicky launched a GoFundMe last week, which has already raised more than £200,000 to cover the cost of Raffi’s treatment, travel and accommodation – and they are now looking to raise more to help with the ongoing cost of medical therapies he will need in the future.
Nicky Starkowitz, with her four-year-old son Raffi, who was diagnosed with a rare brain cancer just months before doctors told her she had breast cancer
Raffi has been under the care of Great Ormond Street, where he underwent a 10-hour operation to remove a large brain tumour and has endured months of intense treatment
The youngster, pictured before his diagnosis, has been accepted onto a pioneering drugs trial at Penn State Children’s Hospital in Pennsylvania
They have pledged any surplus funds will be donated to medical research into medulloblastoma.
Speaking to Daily Mail, Nicky said she had been ‘blown away’ by the generosity of people who have so far donated to their fundraiser, following a rollercoaster period in which both she and her son have been diagnosed with cancer.
It was only seven months ago that her usually ‘cheeky’ toddler, who had not shown any other symptoms, suddenly started ‘looking a bit wobbly’ when he was walking.
Nicky, a paediatric nurse at Northwick Park Hospital, at first thought he might have had an ear infection or post-viral symptoms but received the ‘shock of her life’ when a GP urged her to take him to hospital – and an MRI revealed Raffi had fluid around his brain and a sizeable abnormal mass measuring around 5cm.
Within 48 hours, Raffi’s condition had deteriorated and he was being sick, unable to walk or sit up and was extremely drowsy.
Just five days after his symptoms first began, Raffi was undergoing a lengthy operation at Great Ormond Street to remove his tumour, where his parents were handed the news that not only did he have a rare brain cancer, but it was also extremely aggressive.
Only 52 children in the UK are diagnosed with medulloblastoma each year, and of those just a handful with the same rare subtype that Raffi has.
He has since been undergoing an intense regime of chemotherapy and proton beam radiotherapy at UCL Hospital – but even then doctors have seen progression, with cancer cells spreading to the membranes surrounding Raffi’s brain and spinal cord, while the youngster has had to endure the impact of horrific side effects on his body.
The family has raised more than £200,000 to cover the cost of Raffi’s treatment, travel and accommodation – and they are now looking to raise more to help with the ongoing cost of medical therapies he will need. Raffi is pictured with his older sisters Ella, 10 and Talya, seven
Nicky, who is also mum to daughters Talya, seven and Ella, 10, said: ‘His radiotherapy involved him having to be put to sleep every day for six weeks and then in between he’s also been poorly.
‘The chemo affected his immune system, and so basically he would just get infections, and need antibiotics and blood transfusions, to help his body recover enough that he could have the next treatment.
‘He’s lost all his hair, he’s had sickness and fatigue, hearing loss, and inflammation in his intestines, which caused a huge amount of pain. He needed four different types of IV antibiotics when that happened.
‘Raffi also had shingles and then he had a skin infection, and he had to be on medication for all of that. Any temperature, he has to be in hospital for at least 48 hours, because he’s got no immunity to fight it off and it could lead to sepsis.’
While his treatment in the UK has helped Raffi into remission, doctors told the family they have nothing else available to stop his aggressive type of cancer from returning – but Nicky has been researching for months what options might be available for them and contacted hospitals across America and Europe.
‘Being a paediatrics nurse has been a blessing and a curse,’ admitted Nicky. ‘When I speak with medical professionals, I can grasp what they’re saying probably a bit quicker than Neil can, because I have an understanding.
‘But it’s a curse in the sense I understand what can go wrong quite quickly, which is obviously scary.
‘For his treatment in the UK, Raffi would need to be on a really high dose of chemo – and there’s only so much they can give you, because it gets to the point where it’s so toxic the damage is not worth the effect anymore.
‘With aggressive cancer like this, the cells are really clever and know how to rebuild quickly and recover, so you can hit them with lots of treatment, but there’s a chance it will come back. The point of the DFMO treatment is to try and stop that process happening.
Raffi is still undergoing chemotherapy for his brain cancer, while Nicky has just begun her treatment for breast cancer
‘To be a part of a trial is really exciting for us, because obviously it gives us hope something more can be done, rather than just sitting back and taking a chance on his cancer returning.
‘DFMO has been used within the last three to four years and only on high-risk patients. While the data is quite limited because it’s a newer treatment, the pre-published data looks really promising.
‘We are very excited to be a part of, hopefully, something that will be really beneficial not just to Raffi, but to other children as well.’
As long as Raffi is well enough, the family plan to go to the United States for a week every three months where he will be treated at Penn State Children’s Hospital. They are hoping his medical care can be coordinated between doctors in the US and UK – but if that is not possible, Raffi will fly out every month.
Until then, he is continuing his chemo regime, with his family saying they are ‘living scan by scan, and day by day.’
Nicky added: ‘It’s really not been easy at all, especially when he has been poorly and we see him just lying flat in the bed, hardly talking, hardly moving. It’s been heart-breaking.’
Adding to the family’s concerns at this time, Nicky was shocked to discover that she too was diagnosed with cancer.
She had noticed an inverted line on her left breast in August, with an MRI revealing she had three growths in her armpit and breastbone.
The family have now been thrown a lifeline by Penn State Children’s Hospital in Hershey, Pennsylvania , which has accepted Raffi onto a new trial using DMFO drugs. Pictured: Raffi with his father, Neil
Nicky said of the drugs trial: ‘We are very excited to be a part of, hopefully, something that will be really beneficial not just to Raffi, but to other children as well’
Nikki underwent a full mastectomy and reconstruction at the Royal Free Hospital in north London – during the same week Raffi was being given his first cycle of chemotherapy at Great Ormond Street.
The horrific coincidence of both going through similar journeys is not lost on Nicky, but she says her priority remains Raffi’s recovery.
‘Next week, we are both due to have chemo – but at least if we are going to feel rubbish, we can snuggle at home and feel rubbish together.
‘We are just dealing with each day as it comes and Neil has been amazing looking after us and the girls, while also still going out to work.
‘For now we just want to do the best we can for Raffi. We love him so much – he’s everything to us.
‘We just want to do everything in our power to give him the best chance he deserves.’
To donate to Raffi’s GoFundMe, visit here