As brave Cameron Truesdale flies back to Mexico to receive further treatment for his brain tumour his mum this week reflected on a ‘world breakthrough’.
The Waringstown 12-year-old has been battling an aggressive DIPG brain tumour and has been at the centre of a massive fundraising drive to raise the £300,000 needed for his treatment in Mexico.
He sets off on the marathon trip back to Monterey with his dad Hammie today (Wednesday) - covering 5,000 miles in 30 hours.
His mum Cassandra Finnegan pointed to the success of those treatments so far: “The tumour is shrinking. Doctors have said on the MRI on every treatment bar the last one, each treatment shows slight shrinkage. Not lots but DIPG is so aggressive to even just stop it is amazing,
“We would be quite happy if it just stopped but to make it go backwards, that is really phenomenal. That’s a real huge breakthrough in the whole world for DIPG. To have that - you can’t ask for anymore. We are on the right path.”
Of his treatments she said: “Clinically the symptoms from all of the procedures, he’s really improved. His speech improved, his balance improved, just wee things like his eating and stuff that I would have picked up on and he noticed as well that he was getting better. It was really lovely to see those things. Before we went out he couldn’t bend over and now he can bend just fine.”
It has been an incredible past year for Cameron and his family following his diagnosis.
For Cassandra her initial shock at her son’s illness turned to ‘fight mode’ as she battled to get her son the treatment he needed.
She said: “It’s disgraceful that there is nothing for Cameron’s cancer.”
When the nature of his illness was revealed she said: “just went into shock and into fight mode. There has been a really emotional breakdown.
“There are some days that it is just horrible and that no one should ever have to see those days but a lot of the time we are strong and we just keep fighting.
“I think because we are so busy all the time it’s easier just to keep going and I think because there is no government funding it really spurs us on, this isn’t right, you can’t do this and there needs to be more. I don’t ever want another family to go through what we have had to go through. The other choice you have is completely horrible, to do nothing.”
They have gained many allies in their battle to get Cameron the breakthrough treatment he needs, not just across Ireland but in Mexico too (and going beyond the hospital walls). Cassandra said: “We were really fortunate with an apartment, I sourced an apartment before we went out and then we met the landlords. When they heard why we were there they were devastated, they offered us an apartment a lot closer to the hospital so it was one of their own personal apartments so they gave it to us for free.
“It’s literally five minutes from the hospital and all we have to pay is our maintenance, like electricity and our water.
“They have been so kind, brought us to their house for meals and their friends and family brought us food round and gave us lifts. They have really and truly been friends to us.”
They have raised over £140,000 so far to cover the costs of Cameron’s treatment and Cassandra said: At the start we were worried it would be slow but once we got to Mexico it hit home. It’s the scariest decision I have had to make in my whole life. To go that far.
“It was September when we left. It’s been phenomenal. We thought people might forget about us, being 5000 miles away but they haven’t. People are still planning fundraisers. I still get people messaging me every other day to say they’ve raised such and such amount or planning another fundraiser and that’s what we need because without that I would just be sat here with no options but to watch Cameron’s health decline.”
Of the treatments she said: “It has been really good. His first treatment was just chemo and he did really well with that, he had no side effects and within a few days of being tired and sore from the initial treatment he was great.
“Actually, about 10 days later he was walking better than he had walked in a long time. One of his symptoms was that he dragged his feet an awful lot and he was lifting his feet off the ground. Another symptom that he had was that his speech was slurred and that soon went as well after another few treatments.
“He started immunotherapy after the second chemo and he’s had four rounds of it. So he’s had four rounds of immunotherapy and five rounds of chemotherapy. Some of them he had a few side effects, one or two of them he had a few migraines.
“The last one was probably the hardest one on him, he had vomiting and he had awful migraines for a few days and it probably took him twice as long to recover from it as it did from any other procedure. He had one night in hospital and then he was able to come home to his own space and lie down and wanted his own computer and his own stuff and had his own home comforts round him.
“Cameron is doing well, a lot of the times he’s a really quiet wee boy so a lot of the time he doesn’t let on that anything is annoying him and he’s fine, quite happy. He’s just likes to be left alone to his own peace and quiet but once every few weeks he’ll get a wee bit emotional and he’ll cave and he’ll let you know that he’s upset.
“At times he doesn’t want any of this to happen any more, he doesn’t want treatment he just wants to go home and be normal. And that’s horrible to hear. You wonder are you doing the right thing but what we have to remember is that if we weren’t in Mexico and if we weren’t doing these treatments he wouldn’t be able to do the things that he wants to do anyway because he would be getting so sick.”
She was full of praise for Cameron’s school: “Brownlow Integrated College have been amazing, from Cameron was diagnosed at the very start they have went out of their way to ensure he’s happy and comfortable in school.
“He has actually missed very, very little of school. He only missed three weeks when he was in radiotherapy at the very start. Other than that he was in school until the day before we left for Mexico. He hasn’t been back obviously because of the holidays because when we came back the school was closed so he had his friends round the other day for a wee catch-up and that was nice. We hope to get him back as soon as he comes back from his treatment.
“How many more treatments ahead of him - we don’t know. This is so new in Mexico. It’s only been happening from February/March time so nobody knows how long it’s going to take and every child is different and every DIPG case is different, there is no text book with DIPG. We’re at treatment five and one example is there’s a wee child whose had eight or nine treatments and they can’t find his on an MRI, now they’re going to do a PET scan, they will leave no stone unturned because DIPG is so rarely ever gone, they want to be one hundred percent sure.
“It’s really just playing it by Cameron and seeing how he is and just keep praying that we don’t need as many treatments as that but if we have to be going to Mexico for the next two years then that’s what we do.”
On funding so far they have enough definitely for two treatments - covering all of January and after they collect anything that’s owed they should have February covered as well.
Cassandra said: “We have raised probably around £140,000/150,000 so we’re halfway there to what we originally wanted to get, which is something I never thought we would get but we have raised that much so far so we have done it once, we can hopefully do it again.”
Pointing to the Star Ball fundraiser in December she said: “That went really well. That was organised in four or five weeks from me and a friend, and me 5,000 miles away. That was just stupid crazy but we made £9,500 at it which is just like wow, we didn’t expect to be near that much.
“A few people have a few things up their sleeves in the year coming. Hopefully people will come up with more fundraising the whole way through 2018.”
Cameron’s illness and the battle for his treatment have made headlines well beyond Lurgan and Cassandra has this to say of the media reaction: “It was a shock. We did think it would be a one hit wonder but the media have been really good. I know some on a first name basis now which is nice that we can send a message and say look there’s a wee update for everyone who has donated.
“It’s not even just for the fundraising but it’s for DIPG, before Cameron we didn’t know about childhood cancer let alone DIPG and it’s to make people aware of what it is. It’s all about awareness with childhood cancer. The more people know the more funding government does.”
If you wish to donate to the fundraising efforts for Cameron see the Cure4Cam facebook page or visit www.justgiving.com/crowdfunding/cure4cam