Remembering CJ McCann - Finding joy in the darkness of childhood cancer

ON October 15, 2023, at 8.04pm, CJ McCann from Ballaghaderreen passed away peacefully in his parents’ arms.
Niamh and Joe McCann endured what no parents should ever have to endure; watching their child suffer and succumb to an extremely rare form of brain cancer at just 21 months old.

Yet in the worst of times, the McCanns enjoyed the best of times and saw the very best of humanity.

On a dark, wet October day, guards of honour from Kilmovee Shamrocks and Ballaghaderreen GAA joined the thousands who mourned the little boy who brought so much joy to so many in such a short life – and still does to this day.

CJ hadn’t enough time to learn to walk or talk. He never played football for Ballaghaderreen, the club so beloved by his father - who won a senior county title with them in 2008 - and his grandfather, Christy.

That didn’t stop him being a joy and inspiration to all.

“We were so grateful for him and he was such an amazing little boy,” his mother, Niamh, tells The Mayo News over tea in her kitchen in Ballaghaderreen, as CJ looks down on us from a picture frame above the sink.

“He had a belly laugh once he started laughing. You didn’t have to know him to get him to laugh. Strangers could walk in and if you did something to engage him, you had him. He was just a constant entertainer and just so bright and colourful all the time.”

In the year since he last closed his eyes, CJ’s legacy has spread far beyond Mayo’s eastern enclave through the CJ’s Rainbow charity cycle.

The idea was conceived in a children’s hospital ward by his dad, Joe. Within months, it transformed from a cycle into a force of nature, one that has raised over €255,000 for two children’s cancer charities that supported the McCanns in their darkest hours.

The first was Oscar’s Kids; a tiny operation that helped them organise Christmas in September (more on that anon). The other was Hand In Hand, a charity which provided play therapy to Róisín and Clodagh McCann while their little brother was slowly dying.

Niamh and Joe McCann are happy people, by their own admission and as evidenced by spending over two hours in their company.

Joe, an All-Ireland-winning handball champion, met Niamh, a native of Westmeath, on a handball court when they were in college in the early 2000s. They hooked up years later, and married on May 30, 2014.

They laugh and cry, but mostly smile when recalling their son’s amazing life. Their love for CJ is plain to see in every room in their house. In the light-up rainbow in the window in his empty upstairs bedroom, in the photo album, on Joe’s watch, on Niamh’s necklace and phone screen and so many other precious treasures and trinkets.

His cancer diagnosis at ten months old came as a numbing blow. But sadly, it was nothing new to them.

THE MIRACLE
IN March 2016, God blessed the McCann’s love with a beautiful, healthy girl named Róisín. On October 5, 2017, along came Clodagh, who later became known as ‘the miracle’.

“Unfortunately I had a uterine rupture when Clodagh was born,” Niamh explains.

Clodagh was then taken to Dublin’s Holles Street hospital for brain cooling while her mother received a blood transfusion in the ICU in Sligo.

“We met probably for the first time when she was four days old. Then we were given a very bad prognosis,” she adds.

“The consultant used the phrase: ‘We don’t know if Clodagh will walk, talk or ride a bike. That was the way it was left and thatwe wouldn’t really know until she was two.”

For the next two years Niamh, in her words, became Clodagh’s carer, occupational therapist and physio ‘instead of her mother’.
Through the ‘earliest of early interventions’ with daily, diligent physiotherapy, Clodagh eventually learned to walk, talk and kick a ball the same as any other child.

Niamh and Joe both needed counseling from the resulting trauma and were told not to have any more children. At best, they’d have to wait a few years before trying again.

“We talked about having no more kids after Clodagh. I said ‘Joe, I just feel like there’s a little person that wants to meet us’. And if we don’t [try] we’ll never get to know who that person was,” says Niamh.

Christopher John McCann arrived into the world at 9.09am on January 17, 2022. He was four weeks premature, but all was well. Niamh’s little family was now just like her own; two girls and a boy named after his two grandfathers. It was everything she ever wanted.

“From that moment on, I never looked at our children the same way. When CJ came along I looked at the three of them through absolute sheer awe, when you realise how miraculous they are.”

It was the best day of her life, one she re-lived every Monday thereafter.

“I used to lie in the bed at 9.09, Joe used to bring the girls to school, and I used to video CJ and take photos of him, because I was so grateful,” she recalls with a tearful smile.

Their first ten months with CJ were magical but bittersweet. That same year, her brother Seán was diagnosed with a brain tumour. In July, Niamh lost her aunt Martina to cancer. She had been a big support to her when her own father John Egan died an active, healthy young man at the age 37. Niamh was just 12 at the time.

In November, CJ suffered a fall and was brought to hospital. There, his paediatrician requested a CT scan, which diagnosed an atypical teratoid rhabdoid tumour (ATRT) in CJ’s brain. His chances of contracting ATRT were one in a million. His chances of survival were between five and fifteen percent.

But after what they had been through with Clodagh, Niamh and Joe firmly believed they would be granted ‘another miracle’.
“We said the day CJ was diagnosed, ‘There will be joy again’. We knew that. We hoped that CJ will be with us,” says Niamh.
And they had reason to be hopeful. Because CJ was diagnosed at an early age, it meant he could undergo surgery.
That was followed by a high dose of chemotherapy which left CJ as sick as he had ever been.

But CJ never gave up. Because sick children never give up, according to one nurse Joe met while Clodagh was in ICU.
“I asked one of the nurses…why in God’s name she works in the ICU ward in Holles Street. And she said, ‘Because I worked in adult wards, and adults give up.’ And I went, ‘What?’ She goes ‘Adults give up’. She said, ‘Every child that’s born will fight as much as they can to survive’. She said, ‘That’s the one thing that keeps me here’.”

Soon after that round of chemo was over, CJ smiled again. Niamh and Joe recall that moment vividly.

“Him opening his eyes, smiling for the first time after surgery was one of the biggest things that I’ve ever celebrated,” says Joe.

“I’ve played handball, I’ve won All-Irelands, but him literally smiling - a lot of people go through life and they go through life with their kids, and they don’t get that feeling.”

NEVER GIVING UP
FOR eleven months, the McCanns felt pain that few parents can comprehend. But they also felt the joy that only a fighter like CJ could instil.

There were times when it was all about getting through that day - such as CJ’s first birthday, when they were told there was no bed for him in Crumlin.

At times, it was about getting through the next hour, the next fifteen minutes, or even the next few seconds.
At nineteen months old, CJ was diagnosed as terminally ill. That meant he would not see Christmas.

Niamh and Joe relayed the news to Clodagh and Róisín, and the family cried together.

But throughout it all, they were determined to make the most of their time with CJ.

They splashed at the beach and in Center Parcs, climbed half-way up Knocknarea and made magic and merriment whenever they went.

They lived by the words that became the motto of CJ’s Rainbow: “Never stop living.”

“Maybe it was born out of a little bit of anger with the world, but definitely I felt like CJ gave me those words, that you can plan for the future but don’t wait for it. Keep living every day you have because life is so precious,” Niamh explains.“St John’s [Ward] taught me that. Meeting all of those other parents, seeing those children. I met more heroes in nine months than I will in my life because what those kids had to go through, it’s just immense.”

With the help of Oscar’s Kids, the McCanns even got to enjoy a magical September Christmas. Over 30,000 Christmas cards came through their door that month. Then came presents, the real Santy, Christmas dinner, friends, family, the works - and it still warm outside.

“When Niamh suggested a Christmas in September, I was like ‘That is the last thing that we want to think about right now’. But it was the craziest most brilliant thing that we probably ever did,” smiles Joe.

CJ also became Kilmovee Shamrocks’ most popular supporter, making regular appearances at his mother’s matches. Today, they carry his memory in the CJ’s Rainbow logo stitched into the back of the green and gold jersey his mother wears so proudly.

Ten days before he died, CJ was given a personalised Ballaghaderreen jersey from the great Andy Moran.

“They’ll never know how much that small gesture means to us forever,” Niamh tearfully remarks. “Because I do feel like that’s the power that the GAA has in communities, and for us, it was amazing to be able to bring CJ, for him to be such a big part of Kilmovee and me to be able to play and feel so comfortable.”

And so the little páirc peile sandwiched between the stream and the slatted shed became the oasis where Niamh left all her worries and trauma behind.

“To be part of a different community other than childhood cancer was actually really nice. To experience something normal, it was so lovely,” she says.

“I always call them my sixteen-year-old-friends - but obviously I’m a bit older than my teammates. But to be able to go out and they go, ‘How’s CJ?’, and I’d say, ‘Ya, he’s doing well,’ or ‘not so well’, or ‘he’s starting treatment or finishing this round.’ And then we’d play football, and for the next hour all of those worries and concerns were parked.

“And yeah, for sure, you got back into the car and the reality of what you’re going back to set in again, but yet for that hour it was a reprieve from the intensity and worries of what life was.”

LAST GOODBYE
ON October 15, 2023, the loving arms that held CJ on sidelines were now grasping him tightly in bed.

The big belly laugh had sounded for the last time and the glowing angelic smile now lived only in photographs.

“Is he dead yet?” his sister Clodagh would innocently ask as family and friends flocked to bid farewell to the little warrior who touched their hearts and enriched their lives.

“Lay beside me, it’s time to rest. You can close your eyes, you’ve done your best.”

So went the words of ‘Sanctuary’ - a song from Niamh’s beloved ‘Nashville’ - not long before her only son took his final breath.
The second miracle McCanns longed for never came to be. But Ballaghaderreen Parish Priest, Fr Paul Kivlehan, gently begged to differ.

“He said: ‘You know Niamh, CJ’s life could have been the miracle. Him being here and the impact of his twenty-one months could be the miracle as opposed to his cancer being cured.’ And I’d like to think that he was a miracle in coming to life and that was the journey for him, that’s just the way it was meant to be.”

CJ’s life was over, but his legacy had only begun.

Inspired by the Kacey Musgraves song ‘Rainbows’ and one of his first baby grows, CJ’s Rainbow rose heavenwards in the summer of 2024.

Reinforced by an army of bucket collectors, the main event saw CJ’s father and 20 other cyclists - one for each month he lived - travel 630 kilometres from Malin Head to Mizen Head against the prevailing winds.

The money raised will make life less difficult for the next CJ, Clodagh or Róisín McCann.

But if CJ McCann’s life meant anything, it’s that joy, love and happiness can be found even in the darkest of times.

“To acknowledge that it’s okay to laugh and it’s okay to be happy in the darkest places, to find joy,” his mother explains.

“I think that’s small sparks, on any given day, no matter how hard it is, there’s room to smile or laugh or find joy, so chase it.

Try and find whatever that is on any given day. Find joy in the darkness.”

And never stop living.