Nicole GlennonJust 10% of children diagnosed with DIPG will survive for two years following their diagnosis. The average life expectancy is nine months.
Yavanna, Lar, and Oscar Keogh spent three and a half years as a young family in a “whirlwind” of joy and adventure. As a young couple in their mid-30s, Oscar was Yavanna and Lar’s first child and he was “the brightest little boy you could imagine,” his mother says. “He was our first child, and every day was magic with him.”
But towards the end of 2017, the Dublin parents began to get the niggling feeling that something wasn’t quite right. “The symptoms were very commonplace,” Lar says. “Everything was a symptom that could be written off as 50 or 60 other smaller things: inner ear infections, upset tummy, allergies, speech and language delay — there was an answer and a reason for everything.” But when Oscar began to have recurrent vomiting episodes, his parents knew something wasn’t right. They brought Oscar to the family GP who advised them to go to Temple Street to “rule out the big things” and work from there. “That was the last day of our lives as we knew it,” Yavanna recalls.
When the family arrived at Temple Street the following day, everything happened at “speed,” Lar says. At the time, this seemed like a good thing, the primary school teacher recounts. The hospital performed a CT scan initially which showed a mass on Oscar’s brainstem. An MRI was scheduled for the following morning to confirm what the consultant was sure he had seen — a tumour. “The next day we got the news,” Yavanna says. Oscar had been diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG) tumor, for which there is no effective treatment and no chance of survival. Yavanna and Lar were told that if their son did well with treatments, he would live for two years at most. The average expectancy of a child with DIPG is nine months.
“It is the most shocking thing to be told your child has cancer,” Yavanna says. “But in the same breath to be told he has stage-four cancer and he won’t get better? To be told you have no options to fight it.. it was life-shattering.” Their whole world had crumbled in an instant, Yavanna says, but there was no time or space to process it. “Oscar was waiting for us with no idea what was happening. He was just expecting his mam and dad to come back in and look after him.”
In the hours and weeks that followed, the couple says they came to an unspoken agreement of how life had to be led from now on — day to day, and with as much joy and love as possible packed into every moment. And for the next 19 months, that is exactly what they did. In July 2019, Oscar passed away just two months after his fifth birthday. Oscar’s life and the impact he had on those who knew him have inspired a new national childhood cancer charity.
Oscar’s Kids, which was launched last month as part of Childhood Cancer Awareness Month, will have two strands — an Irish strand, headed up by his parents, and a US part, headed up by star Melissa Rauch and her husband Winston Beigel. Melissa, as it turns out, was Oscar’s ‘girlfriend’.
“We all used to watch at home, and Oscar really loved the character Bernadette,” Yavanna says. “He just fell in love with her and one day declared ‘Bernadette is my girlfriend.’ That was it,” she laughs. “He had found his love!” Yavanna and Lar contacted the actress online one night hoping they might swing an autograph and make Oscar’s day. “The very next morning, she replied to us. She got the full cast to send across a video for him and sent him over toys and treats.” “From that moment on, she was a best friend to him.”
In the final weeks of Oscar’s life, the actress was in touch with him on a daily basis, his parents say, sending messages and videos and being the “finest girlfriend” anyone could ask for. After Oscar passed away, Melissa, who is herself a parent to two children under five, stayed in touch with Yav and Lar. “One day she said, ‘Listen, my husband Winston and I have been talking, and we want to start a childhood cancer charity in America, and we want to do it in Oscar’s name,” Yav recalls. “In the very early days of Oscars passing when we were literally just in the pitch dark on the floor with grief.. it was a light in that dark.” The couples decided to join together, as friends and as parents, and Oscar’s Kids was born.
On this side of the Atlantic, the focus will be on providing comfort and joy to the lives of children currently navigating a cancer diagnosis. Yavanna and Lar are eager to talk about their first large-scale fundraising event, Oscar’s Kids PJ Party, which will be held simultaneously on both sides of the Atlantic on November 5. On that date, the Keoghs are asking adults, children, pets, and even teddies and toys, to don their brightest and best pjs in honor of Oscar, and of all children undergoing cancer treatment, and make a donation to the charity. “Oscar, after his diagnosis, found himself facing incredibly tough days in his pjs which became his comforting and colourful uniform,” Yavanna says.
“We’ve seen firsthand the strength and bravery of children facing the most unimaginable things and their pjs become their superhero costumes… so it felt like a fitting way to celebrate them.” Lar has been tasked with getting schools involved, and the parents are contacting businesses too, hoping employees might be allowed to wear their pyjamas for a day in the name of charity. The funds raised on the day will go towards funding a variety of the charity’s projects which are inspired by Oscar’s experiences in Temple Street. One such project is Oscar’s Magic Moments.
“When he was receiving radiation treatment, he had to be anaesthetised for 10 days in a row. The first day, he didn’t know what was going to happen but the second day of course he didn’t want to go and get it done again,” Yavanna says. In an effort to distract him and give him something to look forward to, Lar came up with the idea of a magic box that sat on the hall table outside the radiation room and would contain a small gift which Oscar could pick up after his treatment. “For kids, something very small can offer a distraction and give them a focus beyond the very tough and incredible thing they’re going to have to face on a given day,” Yavanna says.
In consultation with social workers and nurses in hospitals, the couple hope to roll out Oscar’s Magic Moment boxes to all children going through gruelling cancer treatments. A form will be offered to families prior to a tough or challenging round of treatment and a child will be able to choose a toy, a book and a sweet treat they would most want to receive. “The idea is that we will make these dreams come true with as quick a turnaround time as possible,” Yavanna says.
The couple has also come up with Oscar’s Kids Comfort Kits, which will contain items for fun, distraction and comfort such as toys and games, colouring and activity books, a book token, nausea bands and a neck pillow, and they aim to give these kits to every child undergoing treatment for cancer in Irish hospitals. Recognising that parents of children with cancer are also in need of support, the charity also plans to develop a new Parents’ Safe Place on St Gabriel’s Ward in Temple Street, where parents can be given a diagnosis and updates in private and retreat for some time alone to process everything.
“It’s incredibly hard to get a diagnosis and having no space where you can gather yourself or have a moment in private as parents is very, very hard,” Yavanna says. “And this is happening every day, there are families just like us that are having a normal day, and then it just stops you in your tracks, I mean we never in a million years thought anything like this would happen to us. “We were a normal family one day and the very next day we weren’t, and we are very aware that every day there are other families going through the same thing.”
Our conversation is interrupted by a little boy. It’s Teddy, their 6-month old who is teething. I wonder if there was any hesitancy in the decision to have another child. “It was a really tough decision to come to,” Yavanna says. “Now it seems easy because he’s here and we know it was the right choice. But we had to do a lot of soul-searching. “We had to know we were going to be able to be strong parents with another little person in the world that needed us to protect and love them.” “We see Oscar in him,” she says. “We’re going to make sure Teddy knows all about Oscar and that he feels the sense of his big brother. “That’s a huge task for us. A little person is going to have to learn all about someone very special and there’s so many conversations we’re going to have to have but we have to be brave because Oscar was.”
