The mum of a cancer-stricken boy who flew to Mexico in a final bid to save his life says her son is finally able to live like a normal seven-year-old thanks to pioneering treatment.
Jennifer Ure Stewart, from Tranent, says Luke is able to run, swim and play a computer after experimental treatment saw his brain tumour shrink by 40 per cent.
Just months ago Luke had been left bed-ridden and his devastated family told he had months left to live. But after raising an incredible £170,000 thanks to the effort of their local community in East Lothian, the family were able to travel to the Monterrey Vale Oriente hospital in Mexico where he has been receiving treatment not currently available on the NHS.
“What this treatment has done for my son is amazing and I need to continue with it, we need to continue with it, I can’t lose our boy, I will keep fighting for him,” Jennifer said.
Jennifer and her husband Mark travelled to Mexico in May, with their three boys including eldest child Luke, aged seven, who is suffering from a rare and aggressive brain tumour.
The family desperately need to hit their target of at least £350,000 as their money will run out in November.
Now, the gamble appears to be paying off as Luke moves past the six-month life expectancy he was given in January after he was diagnosed with the Diffuse Intrinsic Pontine Giloma (DIPG) tumour.
Medical experts say only around ten per cent of children with this type of illness survive longer than two years.
But brave Luke has beaten the odds so far and has undergone his fourth course of Intra-Arterial (IA) chemotherapy treatment and a second round of Immunotherapy.
The IA procedures last around three hours, including an MRI scan with drugs being administered through the basilar and femolar artery which go directly to the pons in Luke’s brain stem.
Jennifer, who is originally from Liberton and works as a business analyst for RBS, decided to pursue treatment in Mexico that is not currently available on the NHS.
The family, including Luke’s brothers Lewis, aged five and 20-month-old Lochlin, have now been in the country nearly two months and Luke’s quality of life seems to have returned.
Jennifer, 33, said: “Luke’s Tumour has shrunk about 40 per cent, but before we come home after the sixth IA and fourth Immunotherapy I will place his first scan against the last scan and do lots of measurements. Luke’s Cyst that occurred due to radiation has reduced quite significantly, just from the last scan in May to this scan in June it was 3mm.
“The doctors can’t tell us how long they think Luke will live for, they are hoping with this treatment forever, but we don’t know. Already he is at least past the six month diagnosis.
“But how long we have with him we don’t know – we believe in this treatment and so do the other families.”
Luke was diagnosed in January with DIPG after dad Mark rushed him to the Royal Hospital for Sick Children after being reassured by medics on four occasions that it was “just a virus” – despite the child slurring his speech, being off-balance and complaining about headaches for the previous three weeks.
Within 30 minutes of being at the hospital Luke had been assessed, seen by a specialist and was being sent for a CT scan which would reveal the tumour.
Jennifer said the treatment has enabled Luke to do the things a normal seven-year-old boy loves, like swimming.
She added: “With regards to tumour shrinking and quality of life, already Luke has quality of life back with this treatment which he didn’t have before. With the tumour shrinking he is doing things that a normal seven-year-old should be doing – smiling, swimming, laughing, playing a computer, riding a motorbike at the arcade, running – and with this treatment I just hope all of this keeps happening.”
The family are now praying that Luke receives a “No evidence of disease” NED diagnosis, a term that is used when examinations and tests can find no cancer in a patient who has received treatment.
Jennifer added: “Again we don’t know how long we will have to continue this treatment for until NED is reached, it’s very hard to give a timeline as each child is different, but what is amazing about these doctors is they are always thinking about the next step, introducing new drugs, introducing more therapies alongside, to help this monster.
“Even when and if Luke reaches NED he will be monitored closely and be on a maintenance treatment for the rest of his life (we assume) – it’s so early to say what the future holds.
“So far most of the children out in Mexico have responded to the treatment, all have seen shrinkage, cell death, new cell regeneration but most importantly, clinical improvement.”
A major worry for the family is running out of much-needed funds with the target of £350,000 not yet halfway met despite the momentous efforts of everyone involved in the Help Luke campaign.
The IA and Immunotherapy combined treatment cost is £25,000 each and Luke will have completed four of these by the time they come home. On top of that the IAs individually cost £15,000 and Luke will have completed six of these by the end of the initial trip, with the future cost for the combined treatment unknown as it is not clear how many Luke will need.
Also, there will be many more of the individual IAs required at £15,000 a time. Jennifer’s plan is to travel back to Mexico every four weeks with Luke with a return journey for two costing £1,700. Another cost is £15 per day for the youngster’s immune booster and on top of this the family have been in Mexico since May 2 and have to cover living costs.
Jennifer said: “We have put out justgiving to £350k, but to be honest I think we will need to put it up, I just don’t know what the costs will be as I don’t know how many treatments Luke will need.
“All I do know is that our money runs out in November and without any more fundraising or donations, we can’t continue with this and I don’t know where that leaves us. But everyone back home is right behind us, absolutely amazing, and don’t want us to stop this treatment for Luke.”
To help the family contact www.justgiving.com/crowdfunding/AllHelpLuke