THE family of a terminally ill seven-year-old boy are setting off on a journey to Mexico today after a huge fundraising campaign has provided them with hope that vital treatment will prolong their son’s life.
Jennifer Ure Stewart and husband Mark will travel to the Monterrey Vale Oriente hospital with their oldest child Luke, who is suffering from an aggressive brain tumour known as Diffuse Intrinsic Pontine Giloma (DIPG).
The couple from Tranent, who have two other boys Lewis, aged five and 18-month-old Lochlin, are praying a course of Intra-Arterial (IA) chemotherapy treatment will stop the cancer from growing and give them more precious time with the youngster.
A JustGiving page Help Luke set up just four months ago, has so far raised an incredible £150,000 as the local community rallied round to help the couple. Luke was first diagnosed with the condition in January after dad Mark rushed him to the Sick Kids Hospital 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 Sick Kids he’d been assessed, seen by a specialist and was being sent for a CT scan which would reveal the tumour. Jennifer describes the moment they were told the news that is every parent’s worst nightmare.
The 33-year-old said: “They took Mark and I into a room and they could see from the CT scan that he had a brain tumour on the stem but needed to go to neurology to be further diagnosed.
“They could only tell us that it was a tumour in the lower part but they couldn’t give us any more information until a full MRI scan was carried out.
“I ran out the hospital and screamed the place down – my world just fell apart.”
Jennifer, who is originally from Liberton and works as a business analyst for RBS, said she was then faced with having to break the news to family.
She added: “I just sat in the room for a while thinking – how I was going to tell my family?
“My other two boys were with my mum and dad, so I had to phone the grandparents to say ‘well it’s not tonsillitis’ like everybody thought it was and they had to look after the boys so we could get ready for Luke’s MRI scan the next day.
“He had his full MRI and Mark knew something was wrong – he could see the doctors standing around the screen, so he knew it was bad.
“At this point, we still thought – it’s a brain tumour it’s operable, he might have to go through a lot but he’ll be fine.
“He can get an operation, radiotherapy, he can get chemotherapy if we need it – it’s still going to be fine.
“So Luke had the MRI and the following day they went through all his scans and we were told we wouldn’t see the doctor until the afternoon. But in the morning a doctor was standing at the foot of Luke’s bed and right there and then I knew this was bad, because there’s less urgency if it’s not serious but as soon as I saw that doctor there I thought ‘this is bad, this is really bad’.
“We were taken away, they sat us down, told us what it was, told us they couldn’t operate – he would get the bog-standard radiotherapy which would shrink the tumour. They told us the tumour was inoperable purely because of the location.”
The couple were told the radiotherapy would only prolong Luke’s survival by months, giving him a semblance of a quality of life and he could also take steroids to reduce the pressure caused by the tumour - but there was no further treatment available on the NHS.
According to The Brain Tumour Charity only around 10% of children with DIPG survive longer than two years after diagnosis.
The initial plan behind the fundraising effort was for Luke to have a course of ground-breaking treatment known as Convection Enhanced Delivery (CED) which would target his tumour directly bypassing the membrane ‘wall’ known as the blood barrier, which stores intravenous drugs passing from the bloodstream.
This treatment costs £70,000 for the basic operation then £8,000 for a first infusion and then a further £8,000 every three weeks until the tumour shrinks.
However, the family suffered a further setback on the eve of Luke receiving the CED treatment after doctors discovered he had a cyst growing inside the tumour. The cyst was discovered on Tuesday 4th April with Luke in London to receive the much-needed CED operation on Sunday 9th. Jennifer said on top of seeing the lifeline they had been pinning their hopes on cruelly taken away from them - Luke’s condition started to worsen.
She said: “On the Friday night April 7th we thought we were going to lose him. I saw how much he had deteriorated, he couldn’t walk properly, he wasn’t communicating – it was the worst he had been. I thought that was it.”
Luckily, Luke started to slowly recover and Jennifer found strength to embark on further research which led to them finding out about the IA treatment in Mexico. The couple were left with the choice of waiting to see if Luke’s cyst had got better in the hope he can finally receive CED treatment or go to Mexico to be treated by the doctors there in the hope they provide a breakthrough.
Jennifer said: “Knowing which way to turn has been extremely difficult but after seeing my little lad this week, we took our destiny into our own hands & chose to put our hopes into the Mexican doctors like the other families that are being treated at the moment.
“This is not a decision we have taken lightly but believe it’s the right one, we believe they can help us.
“We’ll be in Mexico for 6-8 weeks - Luke will get his operation and first infusion. We’ll then wait three weeks before he gets another infusion then three weeks after that he’ll get another one because they’ll want to make sure he’s reacting OK with the drugs.
“Once Luke has had the treatment we’ll be allowed to come home but we have to go back to Mexico every three weeks and we’ll be there for five days at a time. I have every single emotion possible going through my body. We pray these treatments enable Luke to live his childhood like a normal seven-year-old.”
The cost to see the doctor in Mexico is around $40,000 which includes the initial operation and living costs. The infusions are $10,000 each and then Luke will be given a boost of immunotherapy costing around $15,000. The couple say their fundraising target is £350,000 but they ‘just don’t know’ what the total costs will be. Since the Help Luke page was created on Facebook the response has been incredible with over 22,000 people signing up to help the family.
In just four months they have raised £150,000 and efforts continue with every conceivable fundraising idea being covered from a charity car wash, to Ibiza club nights. Hibs legend Pat Stanton donated a print and all the boys have been regular attendees at Easter Road where they’ve had lunch with the players and performed mascot duties. The boys have also been guests of Chelsea FC and met Diego Costa who shed his image as one of football’s hard men to take Luke under his wing. Jennifer paid tribute to the efforts of the local community.
She said: “It’s really heart-warming, it helps us to get all the lovely messages and I can respond to people. I’m probably not the best at talking about things but I can write it and it makes things easier been able to thank people and telling them Luke’s story.
“I never ever in a million years expected the public response. We’re quite a private family and normally don’t talk about what’s going on.
“For us to have to do this was really hard but we had no other option. It’s been very difficult to accept the money, we’re hard-working parents who give our boys as much as we can, so they can experience things. We were all ready to sell our house but we’ve not got enough equity to even make a dent in the amount required. Asking people for money is something we would never have done but we have no other option. It’s not something you do naturally, it’s been hard but the response has been so humbling.
“I wasn’t going to launch the fundraising page until I knew we had been accepted for CED. So, there was a lot of groundwork done before I launched that page.” To help the family contact www.justgiving.com/crowdfunding/AllHelpLuke