‘To look at your own child and know they are going to die is utterly indescribable’

“To look at your own child and know they are going to die is utterly indescribable,” wrote Yavanna Keogh in one of a series of powerful blogs as she and her husband, Lar, watched cancer consume their son, Oscar.

“Yet, this is still the best time of our lives, even now,” she continued. “Lar and I know there will be a day in the future where we would give anything to be here in the midst of this agony because our boy is still with us, still happy, still filling everyone’s hearts with joy. So we are living each day, not looking ahead, living in the moment as we finally realise that’s all any of us have.”

Their only child at the time, Oscar, was diagnosed at the age of 3½ with incurable diffuse intrinsic pontine glioma (DIPG), a rare type of tumour on his brain stem. “As cancers go, it’s hard to find something worse,” says Lar. “Nine months is the average life expectancy from a DIPG diagnosis. It’s just horrific.”

Determined

The couple were determined to make the most of whatever time the three of them had left together and they filled what turned out to be Oscar's last 19 months with things to make him smile. One of those things was reaching out through social media to, The Big Bang Theory, actor Melissa Rauch, with whom Oscar was smitten from watching the TV comedy series. He had declared her character, the feisty microbiologist Bernadette Rostenkowski-Wolowitz, his "girlfriend".

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When they sent Rauch a request for a signed photo for him, they didn’t expect her to respond. “But by the next morning she had read all about Oscar on our blog at the time and was completely committed to doing anything she could for him. From that moment on, she was honestly the best friend to him.”

Oscar was never defined by cancer, Yavanna stresses. “He lived with it, but it was in the background, an inconvenience to the most joyous life. He made the ordinary extraordinary. And the three of us danced in the light of our love together.”

After Oscar's death in July 2019, at a time when Lar and Yavanna say "we simply didn't have the heart to do anything except survive each day", it was Rauch who approached them to say she was so inspired by Oscar that she and her husband, Winston Beigel, wanted to start a childhood cancer charity in the United States and name it after him.

“We were completely astounded,” says Yavanna. “Suddenly, it felt Oscar had a chance for his story to continue in a very beautiful way that we couldn’t have imagined. And once we knew she wanted to do that, we had to sit down and work out whether we were up to doing the same, if we had the heart to take on such an immense labour of love. Of course, the answer was yes.”

The transatlantic Oscar’s Kids was launched last September, just months after Oscar’s little brother, Teddy, arrived in the world. “The decision to have another child was enormously complicated. It hurt to imagine and yet ultimately it hurt more to imagine not doing it,” says Yavanna.

Trying for a second child was something they had discussed before Oscar’s diagnosis, says Lar. “But there was just no way we could even consider it after we heard his prognosis.”

After Oscar’s death, they wondered would it be fair to bring a baby into their world of grief and would they be consumed with worry about them getting sick too. “But from the moment we knew Yav was expecting, everything just felt right.”

The now nine-month-old Teddy has brought huge joy and there is also satisfaction in seeing the new charities named after his big brother finding their feet.

Main goal

Oscar's Kids US is initially funding research at the Stanford University School of Medicine into the still universally fatal DIPG. Oscar's Kids Ireland also plans to fund paediatric cancer research this year in Europe, for different types of cancer. "But our other main goal is connecting with families and working directly with as many kids as possible around the country," says Yavanna. This will incorporate initiatives that they are already running, called "Comfort Kits" and "Magic Moments".

They have been sending Comfort Kits, containing books, toys and other boredom breakers, snacks and toiletries, to paediatric cancer patients, to give them “a burst of fun and comfort as they face a stay in hospital or a round of treatment”.

The Magic Moments idea was inspired by the random Christmas and birthday celebrations they had for Oscar while he lived with cancer. “A child tells us a dream toy or treat they’d like and we make that happen, along with providing treats for siblings too, as a cancer diagnosis is harrowing on all the family.

“This charity is a testament to our love for Oscar, our sadness and heartbreak and ultimately our anger that cancer is able to affect so many families,” adds Yavanna. “It is a way to choose life, to keep fighting for Oscar against cancer and [for] all other children like him.”