Luke Stewart was diagnosed with an aggressive rare brain tumour known as Diffuse Intrinsic Pontine Giloma (DIPG) last January.
His heartbroken parents Jennifer and Mark, from Tranent, set up the JustGiving page Help Luke which has so far raised an incredible £182,000, money which has been used to give their son groundbreaking treatment in Mexico.
Proud mum Jennifer said it was “indescribable” having Luke here for Christmas as she didn’t think the youngster would see his eighth birthday which he celebrated on 21 December.
Luke spent Christmas Day with his family and friends who have all been “desperate” to see him after he returned from his latest trip to Mexico last week, having undergone his tenth round of treatment.
His parents got him Hibs, Chelsea and Arsenal strips for his birthday as well as football trainers. They have two other boys, Lewis aged five and Lochlin, two, enjoying the excitment.
Jennifer will return to Mexico with her son in six weeks and was delighted to tell the News that Luke is now a “completely different boy” from the child who was at death’s door just a few months ago.
She said: “I don’t know how to put it into words, it’s indescribable having him here when we didn’t think he would be here at all. We didn’t think he would see his eighth birthday.
“When we first found out all I could think about was ‘he’s not even going to make eight years old’ and now nearly a year down the line he’s had his birthday and he’s doing really well. It’s just amazing.
“Everybody’s desperate to see him, we had all the family round at ours for Christmas Day about 14 of us in total. Luke was really excited in the run up to Christmas he couldn’t wait, he was so excited.
“We got him football strips and football trainers.
“He got a mobile phone for his birthday which I was dead against until he was about 12 but when he was diagnosed and he asked for it - I was thinking I don’t even know if you’re going to make 12.
“So why wait? He’s a very sensible little boy and he’s not going to misuse it”
Luke has now had ten Intra-Arterial chemotherapy treatments, four immunotherapy, 50 hyperbaric oxygen treatments and takes regular daily medication to cut his tumour off and stop it growing.
He was given between just six and nine months to live by doctors in Scotland and told that the NHS could only provide him with radiotherapy to provide him with a semblance of quality of life. According to The Brain Tumour Charity only around 10 per cent of children with DIPG survive longer than two years after diagnosis.
However, Jennifer said that Luke’s treatment is paying great dividends with a No Evidence of Disease (NED) verdict edging ever closer.
She said: “We’ve had treatment number ten and we’ve had a PET scan done. This is a very, very, detailed scan which is hugely in-depth, not like an MRI.
“It basically will give you the level of cancer activity, it will let you know if it’s spread anywhere else and it will show any inflammation and necrosis.
“So, he’s had five different scans done, three different contrasts put through his body and the results are that most of his tumour has got zero activity.
“It might not always be there, we’re still looking to reduce it but at the moment the majority of it has gone, there’s one little dot that’s still active but the rest of the tumour is dead.”
East Lothian MSP Iain Gray highlighted Luke’s case along with another youngster Alex Logan who lives in Prestonpans, in a Holyrood debate earlier this month on rare brain tumour cases.
Just weeks after the issue was debated in the House of Commons, Mr Gray spoke about the lack of research into DIPG and other forms of brain tumour in the UK.
Figures from the National Cancer Research Institute have shown that only 1.3 per cent of cancer research funding is currently spent on researching this type of cancer.
He said: “Diffuse Intrinsic Pontine Glioma (DIPG) is a very rare form of brain tumour which affects only 20-30 children a year in the UK. Since becoming aware of Luke and Alex’s cases I have been shocked to discover the lack of treatment available and how little research there is into the condition. It’s time we did better for youngsters like Luke and Alex.”
Jennifer said that every piece of vital medication Luke has been prescribed in Mexico is not available on the NHS in the UK.
So far, the treatment has been a success and Luke has been able to attend school since August full-time and has never had a day off other than going to Mexico for treatment.
She said: “Luke’s been at school, he went to football camp in October and he had a combat party where he was running about in the woods. He’s a completely different boy.
“This is the thing – you have to keep going with treatment.
Jennifer plans to keep fundraising after allowing supporters to enjoy their own festive break, adding: “The fundraising is going a little bit slower but we’re going to hopefully get things in place for next year.
“It would be amazing if somebody wanted to sponsor us, be part of this history. We just need to keep going.”