IN many ways, Aaron McMahon is your typical 16-year-old. A strapping 6ft 1in, he is sports mad, always on the go, and loves life at CBS Midleton.
However, the teenager from Shanagarry in East Cork is undergoing treatment for a rare and aggressive type of tumour in his head. His symptoms date back to 2013, and he is currently at a therapy clinic in Essen, Germany, receiving pioneering specialised treatment.
Aaron, along with his parents, Paul and Gail, has re-located to Essen for two months in the hope the remaining 20% of the cancerous tumour in his head can be erased.
When Aaron, the youngest of three brothers, originally complained of dizzy spells, pains in his joints, and frequent headaches a few years ago, he was advised to take things easy after visiting different consultants.
He was diagnosed with vertigo and thyroid Osgood-Schlatter disease (OSD), but his headaches were progressively worsening.
“He loves his sport and going training with the lads,” says Gail. “But he was constantly exhausted and suffering ferocious headaches.”
He did his Junior Cert a year ago despite his symptoms and continued at school, but by early this year, matters had become critical.
Dr James Ryan at the Mater Private in Mahon hit it off with Aaron and asked him to come into the hospital for a few days the following week so he could do some tests.
Aaron didn’t want to miss any more days from school and was also looking forward to his work placement, as a Transition Year student at a local Centra shop in Castlemartyr, so he asked could he come in on the mid-term break. Dr Ryan told Aaron he could always come to the hospital for his work-placement! Aaron would be very welcome. The pair enjoyed a bit of banter.
Two weeks later, Aaron had all the tests done and was scheduled for an MRI at 8am the next day. Alarm bells rang with Paul and Gail when the Mater MRI team asked if Aaron had had any scans previously as they were leaving the unit.
“We’d never been asked that before,” says Gail. “Paul headed off to work, as life goes on.
“Abbey, the nurse in the Mater, was lovely,” says Gail. “She sat next to Aaron on the bed and then Dr Ryan approached us with papers in his hand.”
At last it was a diagnosis, but not good news.
“Aaron had a pituitary-type tumour in his brain,” says Gail. “I asked, how bad? He said, not good. I could hardly dial Paul’s number. He was driving. I told him to pull over.”
Paul will never forget that call.
“I could hardly start the car after taking the call. I went to work and told my colleagues in Campion Insurance, Midleton, that my son had a brain tumour and that I would contact them in a few days when I knew more. It was very emotional. I had to compose myself and drive back up to be with my wife and son.”
Now it was a different ball game.
“Dr Ryan referred Aaron to Professor Chris Thompson in Beaumont Hospital to see what could be done for him, and we had to wait for their response. Two days later, Aaron was asked to come to Dublin,” recalls Paul.
The ambulance came that Friday night and took Aaron, accompanied by mum Gail, to the Beaumont Hospital.
“Aaron was a bit freaked, says Paul. “Everything happened so fast. He’s highly intelligent. He was able to analyse the situation and just go with it.”
Aaron met Professor Thompson’s team on Monday morning and was referred to neurology.
Neurosurgery expert Mohsen Javadpour was on the case. “He is a very kind and extremely professional man and he kept Aaron in the loop at all times,” says Paul.
“He spoke to Aaron man-to-man. He carefully explained to him how risky the operation was. All Aaron was worried about was was he going to have his hair shaved off his head. We had utmost confidence in him to do the brain surgery and Professor Thompson was on hand to look after Aaron.”
A week later, Aaron returned to Dublin for surgery.
“It was the week before St Patrick’s weekend,” says Paul. “We knew the surgery was extremely risky because of where the tumour was.”
Gail adds: “The surgery took longer than expected. It was a marathon. It was the longest day of our lives but we knew Aaron was in safe hands.”
“Aaron is a resilient and a strong teenager and just wants to enjoy life,” says Paul. “This surgery was risky but had to happen to remove the tumour.”
The parents could do nothing but wait from 8.45am to 5.30pm.
“Dr Javadpaur came to check up on Aaron and told us he was very lucky not to have suffered a stroke undergoing such a big operation and he was very happy with Aaron,” says Gail. “He said he got more of the tumour than he had expected to get but it just was not possible to remove all of it. We were just so relieved that he had made it through the operation.”
Paul and Gail rushed to the bedside of their courageous son.
“Aaron was so pale, and very ill,” says Paul. “he was heavily medicated but his hand came out to grasp ours when he started to come around. Initially, he was unable to see but over the next 24 hours his sight returned slowly.
“We asked him how bad was the pain and he said it was the worst ever. He got an injection for the pain. He was violently sick a few times during his recovery. We thought, this is as bad as it gets.”
But it got worse.
“It was confirmed over a week later that Aaron had a very rare type of cancer, “ says Paul. “Gail and I just held hands while the news was delivered.
“They had got 80% of the tumour, the rest is too near the main artery, the optic nerves and other vital areas. We didn’t know whether the tumour was benign or malignant.
“We were then told it is chordoma, which is a slow, aggressive cancerous growth, The surgeon had mentioned two types of tumour but he hoped it would not be a chordoma. We had looked at both possibilities that were discussed prior to the operation but prayed that it was not this type.”
Gail adds: “We both looked at each other and Paul asked, what do we do now?”
The family found out that there was no further treatment in Ireland for chordoma.
“Dr Javadpur had said there was no more surgery possible,” says Paul. “It was a question of where do we go to from here? We wondered, was that it?”
Paul and Gail were willing to go to any lengths to help their beloved son. Medical science is always improving so they were determined not to accept there was no hope.
They began to look outside Ireland for possible treatments.
“It was very frustrating,” says Paul. “We were told they would refer the patient’s case to Germany and they might accept it, but the criteria is strict. We got news from Beaumont hospital that Germany wanted to see Aaron in a week. We got unexpected news from them regarding financial costs, we were devastated. It is hard to describe the stress and worry we went through and that was added on top of everything else.”
A family friend had encouraged the family to fund raise as soon as they got back from Dublin in March, but Paul says: “We had kept our son’s illness private as we were assured all costs were going to be covered.” Reluctantly, he and Gail decided, with Aaron’s agreement, to seek help with fundraising as the costs of the treatment in Germany were beyond their means.
Time was of the essence. The focus was for Aaron to get better so he could travel to the West German Proton Therapy Centre in Essen — one of the leading institutions for proton therapy in Germany and one of the most advanced proton therapy centres in the world.
Radiographers and medical physicists there work together to treat patients with sensitive or deeply located tumours that are either difficult or impossible to operate on.
Aaron had to travel for an unexpected assessment at short notice, so the family had to book flights and accommodation — another unexpected cost.
“Before we knew it, it was organised for us to go to Germany in May,” says Paul. “We had to book flights, accommodation, travel insurance, reschedule work appointments, it was a bit of a rollercoaster.
“I organised to take time off work again. My employers have been incredibly supportive to my situation.
“Aaron has to beat this thing. Germany was our best shot, no matter the financial cost.
“The reality was that we would need financial help and with input from a good friend, Sheena McGlone, a gofundmepage for Aaron was set up while we flew to Germany. We called it Aaron’s Hope. I had asked for help for my son the week leading up to the German assessment trip as we knew the costs were going to be substantial, but we were unclear just what we needed to raise to help Aaron
“Treatment is over a number of weeks, so our time to raise funds is limited. Everyone has rowed in behind us.”
The response has been phenomenal for the popular lad. Aaron’s brothers, Adam and Andrew, are right behind their younger brother. Schools, organisations and communities have come together to organise fund-raising events that will help Aaron get the crucial treatment he needs. The Shanagarry lad has won over the hearts of the people.
“The amount of support and kindness we have received from our family and friends, from local people, from the school, and from the wider community is just wonderful,” say Paul and Gail
“Everyone is behind Aaron and wishing him all the best on this journey. People are so good. Some people knew Aaron had an operation but were not approaching us as they found it hard to find words to comfort us, but now they can and our local community are just incredible, with words of encouragement for us and helping the fundraising.
“CBS held a fundraising concert for Aaron and for Cian Twomey, a fellow student who is suffering from cancer and who must also go abroad for treatment.
“Cian’s family have been so supportive to us. They understand only too well what we are going through. We wish Cian and his family the best and pray they get the life-saving treatment abroad.”
The family’s first experience in Germany when Aaron went for a medical pre-evaluation ahead of his treatment was bitter-sweet.
“The landlady at the B&B in Essen saw how upset and anxious we were,” says Paul. “Everything had happened so fast amid confusion and dreadful worry. She refused to let us pay for breakfast the next morning. That was so kind of her.”
The family met other families on the same journey. “We went to stay at a communal house near to the clinic,” says Paul. “Similar to the Ronald McDonald House attached to Crumlin Children’s Hospital.
“Aaron didn’t want to go in. He saw another seriously ill boy about his age entering the building and that boy’s mum introduced herself. We met people of all different nationalities with very ill children. They all had one aim in common. They were there to get their child well.”
The McMahons met the teams who would treat their son. The first appointment was booked for May 29. It was a daunting prospect.
“The radiologist explained how the treatment works,” says Paul. “The radiation is the highest level Aaron can have; it is very precise to destroy the active cancer cells.
“Aaron undergoes the radiation for five days a week, for seven weeks. He is likely to get radiation sickness.”
There are demanding weeks and months ahead with so many risks.
“The cancer is so rare it is called an orphan-like disease,” says Paul. “It may come back.”
After the two months of radiation is carried out, Aaron will have to return after three months to see if it worked. He will have constant scans and visits to Germany for the rest of his life so fundraising is vital.
The McMahon family also intend to bring their son to the Chordoma Foundation in the United States in 2018.
“We hope that together we will kick the cancer so Aaron can return to school and play his sports again,” say Paul and Gail. “This is Aaron’s best shot. It is his only shot.”
THERE is ongoing fundraising continuing for Aaron. See https://www.gofundme.com/aarons-hope
Gina and the Champions, with special guest Ronan Collins, will be appearing in a fund-raiser at Garryvoe Hotel on Sunday, July 2.
AIB bank account: Aarons Hope Trust
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