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family's shock Mum tells of 'completely shutting down' after son's rare cancer diagnosis

"I spent the whole time in Temple Street just bawling crying, that was a tough week."

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Young Alex O’Shaughnessy and his big sister Sophie

Young Alex O’Shaughnessy and his big sister Sophie

Alex with his Stormtrooper cake for his 11th birthday

Alex with his Stormtrooper cake for his 11th birthday

Alex loved his trip to Barretstown last February, just before the Covid lockdown

Alex loved his trip to Barretstown last February, just before the Covid lockdown

Alex loved his trip to Barretstown last February, just before the Covid lockdown

Alex loved his trip to Barretstown last February, just before the Covid lockdown

Alex in Barretstown just before the Covid lockdown

Alex in Barretstown just before the Covid lockdown

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Young Alex O’Shaughnessy and his big sister Sophie

The mother of a 12-year-old boy who was diagnosed with a rare form of cancer says she 'completely shut down' after receiving the shocking diagnosis.

Alex O'Shaughnessy, from Co Clare, was just 10 when his health took a turn for the worse in 2019.

"He'd always been exceptionally healthy," explains his mum Agnes.

"We went away for St Patrick's Day but Alex really wasn't well. He was complaining about a pain in his head all weekend. I took him to see the doctor, who noticed a swelling in Alex's face and told us to go to A&E.

"It was a relief when the team at the hospital told us Alex was fine and that it might be cluster headaches. But just a few weeks later we had another scare when Alex's coach called to say Alex had trouble breathing. I was advised to take him for allergy tests, but this time the doctor seemed more worried."

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Alex loved his trip to Barretstown last February, just before the Covid lockdown

Alex loved his trip to Barretstown last February, just before the Covid lockdown

Alex loved his trip to Barretstown last February, just before the Covid lockdown

Alex had an MRI scan and it was eventually found after several tests that he had a rare form of cancer in the skull called rhabdomyosarcoma.

"They say it's the most common soft tissue tumour in a child, it's not very common here in Ireland - you are talking two children a year," explains Agnes.

"Cancer in children isn't that common anyway. We didn't have a notion. We asked to spell it, they said 'please don't Google it' - of course we did. It was kind of a reaction. It's not a pretty thing to do."

Shocked

The family - Agnes, a rural development officer, dad George, an aircraft company supervisor in Shannon, twin brothers, Evan and Lee (23) and sister Sophie (18) - were shocked.

"I literally completely shut down," admits Agnes. "My husband was instantly upset. I wasn't - I just completely shut down. It wasn't until we were admitting him to Temple Street and I kept telling them how healthy he was, because he was, he was a very healthy child.

"It was only when I kept repeating how healthy he was and I could see more and more sympathy looks at me, it hit me then. I was like 'oh he's not a healthy child any more' and all of a sudden it hit me then. So I spent the whole time in Temple Street just bawling crying, that was a tough week, because we just didn't know."

Alex had treatment in several hospitals, including Temple Street and Crumlin Children's Hospitals in Dublin, and also at a facility in Germany.

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"Alex started having chemotherapy and radiotherapy straight away, going forward and back from where we live in Co Clare to Crumlin for months and months," she recalls.

"We spent a whole year completely consumed by everything medical. In late 2019, we even had to move to Germany for seven weeks so Alex could have a specialist treatment not available here. All of this turmoil hit Alex's big sister Sophie very hard too."

Alex's hair began to fall out because of strong chemo in his first cycle of treatment.

"We shaved it within two weeks," she reveals. "He wore caps the whole time. He would leave the cap off at home, but if he heard there was someone coming to the house he would put the cap on - he was very conscious of it."

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Alex with his Stormtrooper cake for his 11th birthday

Alex with his Stormtrooper cake for his 11th birthday

Alex with his Stormtrooper cake for his 11th birthday

A social worker recommended Barretstown camp to them and the family went at the end of February last year.

"Straight away we saw the importance of it because Alex had missed out on so much in his life," Agnes recalls.

"My main memory is of just watching Alex, seeing how he evolved over the weekend. It was the first time from when he started treatment that he really laughed and was a child again. He let go.

"There was a silliness about him that hadn't been there before that. One thing that really helped him was seeing other children who had lost their hair because of chemo. His hair was just starting to come back at that point and it really helped him to see kids being carefree about it. He started to think 'OK, maybe I can take my cap off'.

"He got to meet other children of his own age who were also struggling with various illnesses, and he particularly enjoyed wall climbing.

"That incredible weekend at Barretstown was going to be our turning point," Agnes says. "After everything we'd been through, it felt like we were starting to move forward and get our lives back. But it didn't work out like that.

Special

"The very next week Covid-19 hit Ireland and we had to go into lockdown. Ever since we got back from Barretstown, we've literally stayed in. Instead of moving forward, Alex has lost another year of his young life. He just wants his life back, his childhood back.

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Alex loved his trip to Barretstown last February, just before the Covid lockdown

Alex loved his trip to Barretstown last February, just before the Covid lockdown

Alex loved his trip to Barretstown last February, just before the Covid lockdown

"It's not just the fact that he gets to have fun at Barretstown that makes it so special," she says. "It isn't just like going on a holiday. It's the therapeutic side of it too, that's the difference.

"Right now, Alex is doing really well, but we are always watching closely for any signs of relapse.

"More than anything, Alex wants to go back to Barretstown.

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Alex in Barretstown just before the Covid lockdown

Alex in Barretstown just before the Covid lockdown

Alex in Barretstown just before the Covid lockdown

"We need to make this happen, he has lost over two years of his childhood. We're not the only ones.

"There are thousands of families like ours across Ireland who have been through the isolation of lockdown while living with serious illness and who desperately need Barretstown's therapeutic programmes to help."

Barretstown's spring appeal centres on the theme of 'hope' as this amazing organisation has experienced an income shortfall of €1 million in 2020 due to the postponement of all its key fundraising initiatives.

These events provide crucial income for Barretstown, which relies on the public to provide 98 per cent of the funds that make their work possible.


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