WHEN baby Robin didn't seem his normally happy self shortly after his first birthday, his parents suspected he was teething.
But Rachel and Nick Samuel knew something was seriously wrong when the tot woke up screaming one day in January.
Now the race is on to raise £300,000 to fund potentially life-saving treatment for the baby boy, who was diagnosed with a rare and aggressive form of cancer.
Little Robin, from London, had no symptoms before his sudden diagnosis.
His mum Rachel, 43, said: "We thought that he was starting to teethe because he's normally a very happy baby.
"But we realised something more serious was going on at the end of January, about 10 days after his first birthday, when he woke up, and he was screaming in pain. He'd never done that before.
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"We whisked him straight to A&E, and he was blue-lighted to Great Ormond Street, where he stayed for the best part of two weeks, after an ultrasound revealed a massive 10cm-diameter lump.
"He was diagnosed with cancer the same day because it's so rare. When they see it, they know exactly what it is."
Doctors said Robin had a high-risk neuroblastoma cancer after spotting the lump above his kidney.
He immediately began chemotherapy and tests later showed the cancer had spread to his abdomen, pelvis, spine, and bone marrow.
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The tot went through eight cycles of high intensity chemo, a stem cell harvest and a nine-hour operation.
While Robin, now 18 months old, has no detectable cancer after a gruelling course of treatment, the aggressive cancer is likely to return.
Even with continued treatment, Rachel and Nick, 39, said his chances of survival are 40 to 60 per cent.
They are now raising £300K for a specialist immunotherapy treatment, not currently available in the UK, which is hoped will raise his chances of survival to 90 per cent.
Available in Barcelona, the pioneering new cancer treatment trains the body's immune system to kill cancer cells before they become problematic.
Rachel, a communications manager, said: "He has something called the oncogene, which means the cancerous cells in his body replicate stupidly fast, so if there's anything remaining that can't be detected, it will develop very quickly.
"We need him to have this treatment as soon as possible. So the sooner he gets it, the better chance he will have.
"It's an antigen therapy. The neuroblastoma cells look a bit different. The treatment identifies cells that look like that and kills them.
"If he gets the treatment, his body will learn to identify the dangerous cells and kill them before they become problematic.
"A lot of specialised drugs for rare things are quite expensive. I don't think it's that common for people to just have £300K in their back pocket."
Rachel stressed the severity of Robin's cancer, which affects just 50 children a year in the UK, explaining that his chances of survival will drop dramatically if it returns.
She said: "High-risk neuroblastoma has one of the poorest survival rates of all childhood cancers.
"The survival rate is between 40 to 60 per cent. If it relapses, that drops to between 10 and five per cent."
Despite being just a baby, Robin has been incredibly brave throughout his ordeal and his mum praised his older brothers, from her previous marriage, for keeping him strong.
She said: "He responded extremely well to his treatment. Probably the best we could have hoped.
"Maybe that's down to him being a child. Adults are more aware of what's going on and they get anxious, but he didn't have any of that and coped remarkably well with the pain and suffering."
"It's quite common for children to have to go into hospital in between the chemotherapy because it makes them so sick, but Robin never had to do that.
"We tried really hard to maintain a normal home environment and create some really happy memories with him.
"He's got two older brothers, who are from my previous marriage, so they don't live with us, but they're here a lot. They've been a pillar of strength because they're a little bit older, but they're also children. They just want to play with Robin."
Rachel and Nick, a composer, have started a crowdfunder help pay for the costs of the treatment.
What is neuroblastoma?
Little Robin was diagnosed with high-risk MYCN-amplified neuroblastoma, according to the crowdfunder.
Nueroblastoma is is a rare cancer that affects children, mostly those under the age of five, Cancer Research UK states.
Around 100 children aged up to 14 are diagnosed with the cancer each year in the UK, the charity said.
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It often starts in the tummy, either in the adrenal gland or the nerve tissue at the back part of the abdomen, but half of the children suffering with neuroblastoma will see it spread to other parts of the body, as in Robin's case.
Most commonly, it will later be found in places like the bones and bone marrow, liver and skin, according to Cancer Research UK.
What are the symptoms of neuroblastoma?
ACCORDING to Cancer Research UK, the most common symptom of this rare but aggressive childhood cancer is a lump in the tummy.
This could make your tot's tummy swell, causing discomfort or pain. and some children may even get constipation.
The appearance of other symptoms will depend on where in the body the cancer stated and whether it's spread to other places.
They might be quite vague and include:
- loss of movement in the lower part of the body
- difficulty swallowing
- bone pain
- loss of appetite
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