A terminal diagnosis is always daunting, terrifying, and sad—not only for the person diagnosed, but his loved ones, too. And as a parent, the worst news you could possibly receive is that your child has to battle a disease for which there is no cure. So when Pound Ridge, New York-based Hide Harashima's 6-year-old son, Lucas, was diagnosed with a rare terminal pediatric cancer in 2016, it was a devastating doctor's visit. As his son was a happy, well-adjusted, and much-loved little boy, Harashima says it was unfathomable to know he was sick.
"He just finished his kindergarten year, and is a silly, energetic, and social kid," Harashima told Parents.com. "Over the previous summers, he has enjoyed going camping, swimming at the town park, enjoyed karate lessons with his 9-year-old brother Kai, and is an overly happy and engaged person. He has always managed to make everyone smile. Like most 6-year-old kids, Lucas only knows how to give joy to others. He doesn't understand why he is sick, and as parents, it breaks our heart that he has to experience this."
Lucas is undergoing treatment for DIPG—Diffuse Intrinsic Pontine Glioma—an aggressive tumor of the brainstem that occurs almost exclusively in children between the ages of 4 and 11. Heartbreakingly, DIPG is not operable and has no cure. Those who are diagnosed have less than a 10 percent chance to survive two years, as the tumor causes them to gradually lose control of the nerves in their eyes and face, which impacts chewing and swallowing. "It robs children of their mobility, hearing, seeing, swallowing, and breathing—their independence, their lives, and eventually their families' hearts," Harashima says.
And because it's such a rare disease (about 200-400 U.S. children are diagnosed with DIPG each year), there is little funding to support it. As family friend Karissa O'Reilly explained, "While researching DIPG online, I learned that there has been no change in the prognosis of a child diagnosed with DIPG in 40 years. This has to change. Just because a cancer is rare does not mean it shouldn't get the same attention as other, more common, cancers. One child lost to cancer is one too many."
That's why the town of Pound Ridge is banding together to help fund chemo and immunotherapy for Lucas to ease symptoms and allow him, at the very least, a chance for a breakthrough treatment that goes beyond the current standard of care in the U.S.
As a small town, the impact of this overwhelming diagnosis is felt in every corner. O'Reilly got to know the Harashima family through the local elementary school, where her children also attend. "I first met him at a town-wide camping event in early September (about a week before his diagnosis). He stood out to me because all of the 'big kids' wanted to hang out with him. It was so cute how much everyone loved to be around him. He just radiates joy," she shared. " Even with all he's been through, this continues to be true. When he is well enough to go into school for assemblies and other events, I overhear kids talking about him and you can see how much happiness it brings them just to be around him. This isn't just because Lucas has DIPG—it's a part of who Lucas is."
From the day they found out, the school and town has been supportive. The school nurse organized a coin drive and, after learning that Lucas is a big fan of the Minions and his favorite movie is Despicable Me, a parent organized kids from the community to dress as Minions for Halloween to show their support. Then Lucas' preschool held a Chili Cook-Off to raise money.
Early in Lucas' diagnosis, the Harashimas asked that funds raised be donated to DIPG research. But on June 17, Lucas' mom, Sansan, posted on a Facebook page dedicated to updates about Lucas that her son had been accepted into a new treatment option in Mexico—one that has shown some promising results. However, the costs will be entirely out-of-pocket for the family.
"The doctors in Mexico are up against the same dismal disease, but their mindset is different. They say to parents, 'We want to save your son.' It's not a promise. It's a simple statement that conveys compassionate intent and instills cautious hope. While results have varied, understandably, kids who are being treated have generally shown positive signs of improvement including shrinkage of tumors," Harashima shared. "It is not one that is 'recommended' by our medical team at Memorial Sloan Kettering Cancer Center, though they will support our decision. They have run out of scientifically proven treatments or well-controlled studies to offer Lucas apart from palliative, quality-of-life care."
With that glimmer of hope, the community sprang right back into action: Kids started selling lemonade, the Cub Scouts (which Lucas and his brother, Kai, are part of) are planning on asking for donations at the town's upcoming Fourth of July fireworks, and several parents are planning fundraisers to get the family to Mexico.
For O'Reilly, her turn to take action came with the idea that Despicable Me 3 was coming out soon, giving Lucas the chance to watch the Minions on the big screen, surrounded by his friends and classmates, while also raising money. While her motivation is to help a family in need, she was also inspired by her own journey. Her father was diganosed with terminal cancer at the age of 28, when she was just 5 years old, and given six months to live. "Thanks to the fundraising efforts of our community, he was able to receive groundbreaking treatment that gave us another five years with him. I treasure those years immensely," she shared.
The fundraiser will take place Sunday, July 2 at 9 a.m. at The Prospector Theater in Ridgefield, CT, with 100 percent of the proceeds going to the Harashimas. Within a day, all 165 tickets were sold out. Their first goal was to get to $147, 440 to cover the expenses of the treatment alone: "We are planning at least five visits to Mexico to complete his immunotherapy and chemotherapy treatment plan. The first visit has been funded by our savings and from contributions to Lucas' campaign. The visit will include consultations, an MRI, and the first intra-arterial (IA) injection to send chemotherapy drugs at or near the site of the tumor," Harashima shared.
To date, the fundraiser has surpassed $180K, with an ultimate goal of $300K to cover all travel and expenses. To help this family, visit the Help Lucas Crush Cancer YouCaring page.