“Watching your own child and knowing that he is going to die is utterly indescribable,” Yavanna Keogh wrote in one of a series of powerful blog posts as she and her husband, Lar, watched cancer devour their son. , Oscar.

“Yet it’s still the best time of our lives, even now,” she continued. “Lar and I know there will be a day in the future when 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 heart with joy. So we live each day, without looking to the future, living in the moment when we finally realize that this is all each of us has.

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

Oscar “filled everyone’s heart with joy”.

Determined

The couple were determined to make the most of the time the three of them had left, 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 via social media to The Big Bang Theory actor Melissa Rauch, who Oscar was smitten with watching the TV comedy series. He had declared his character, the fiery microbiologist Bernadette Rostenkowski-Wolowitz, his “girlfriend”.

When they sent Rauch a request for an autographed photo for him, they didn’t expect her to respond. “But the next morning she had read all about Oscar on our blog at the time and was totally determined to do whatever she could for him. From that point on, she was honestly his best friend.

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

After Oscar died in July 2019, at a time when Lar and Yavanna say “we just didn’t have the heart to do anything but survive each day”, it was Rauch who approached them to tell them that 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 her.

“We were completely blown away,” says Yavanna. “Suddenly I felt like Oscar had a chance for her story to continue in a really beautiful way that we couldn’t have imagined. And once we knew she wanted to do that, we had to sit down and determine if we were ready to do the same, if we had the heart to undertake such an immense labor of love.Of course, the answer was yes.

American actor Melissa Rauch and her husband contacted Oscar's parents after his death to say they wanted to start a childhood cancer charity in the United States and name him after him.  Photography: Alberto E. Rodriguez/Getty Images

American actor Melissa Rauch and her husband contacted Oscar’s parents after his death to say they wanted to start a childhood cancer charity in the United States and name him after him. Photography: Alberto E. Rodriguez/Getty Images

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

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

After Oscar died, they wondered if it would be right to bring a baby into their world of grief and if they would also be concerned about them getting sick. “But from the moment we knew Yav was waiting, everything was fine.”

Teddy, now nine months old, has brought immense joy and there is also satisfaction in seeing the new charities named after his big brother find their feet.

Primary objective

Oscar’s Kids United States initially funds research at the Stanford University School of Medicine on the always deadly DIPG. Oscar’s children Ireland also plans to fund pediatric cancer research in Europe this year, for different types of cancer. “But our other main goal is to connect with families and work directly with as many children as possible across the country,” says Yavanna. This will incorporate initiatives they already run, called “Comfort Kits” and “Magic Moments”.

They sent comfort kits, containing books, toys and other boredom busters, snacks and toiletries, to pediatric cancer patients, to give them “a burst of fun and comfort so whether they are facing a hospital stay or a course of treatment.”

The idea for Magic Moments was inspired by the random Christmas and birthday celebrations they had for Oscar while he was living with cancer. “A child tells us a dream toy or treat they would like and we make it happen, plus provide treats for siblings too, because a cancer diagnosis is hard on the whole family.

“This charity is a testament to our love for Oscar, our sadness and grief and ultimately our anger that cancer can affect so many families,” adds Yavanna. “It’s a way of choosing life, of continuing to fight for the Oscar against cancer and [for] all the other kids like him.