Caleb Lanz was an energetic and active young boy who loved spending time outdoors whenever he got the chance. He enjoyed a variety of activities, from boating and fishing to baseball and hockey. Caleb was born in November of 2001 and grew up in the town of Kelowna, British Columbia, where his parents still live today. Prior to his diagnosis, Caleb lived a relatively normal life, spending his free time with friends and family. He and his dad enjoyed taking fishing trips and he had the most fun with his mom during their “date nights,” which usually consisted of dinner and a movie. Shortly after his 8th birthday, however, Caleb was diagnosed with DIPG. What started out as a bump on his head turned into a journey that would change Caleb’s life forever. 

Following his diagnosis, Caleb and his parents traveled four hours away from their home to Vancouver so Caleb could receive his first round of radiation and chemotherapy. He responded well to the treatment and experienced what is commonly known as a “honeymoon period” where the brain tumor symptoms subsided, so they returned home. However, Caleb’s symptoms came back, which prompted his mom, Shelley, to reach out to a doctor at Cornell about further treatment options. They planned on traveling to Mexico to receive treatment, but Caleb’s condition deteriorated too much so they never went through with these plans. Instead, Shelley convinced local hospitals in Kelowna to give her son the additional round of radiation he needed. Although this second round of treatment bought Caleb another nine months, his quality of life diminished significantly, and he eventually gained his wings after battling DIPG for twenty months. 

Although Caleb lived longer than most children do after being diagnosed with DIPG, there is not enough time in the world that can prepare a parent for the loss of a child. Shelley recalls times when she felt hopeful that a cure for DIPG would come around in time to save Caleb and spent countless hours researching different alternatives to treat her son. When looking back on the experience, she doesn’t necessarily have regrets but wishes she had channeled some of the energy from researching to spending more quality time with Caleb instead. She also feels that she should have discussed DIPG with Caleb more openly. Wanting to be a supportive mom, she let Caleb decide when it was best to talk about his DIPG, but he was often in denial about the seriousness of this condition. It wasn’t until Caleb’s friend was also diagnosed and eventually passed when he realized that he could have a similar fate. Had she been more open to the idea of talking to Caleb about DIPG, Shelley felt she could have helped her son better come to terms with this disease.

Caleb’s journey from diagnosis to his passing was no doubt one of the hardest things Shelley had to go through, but she felt an immense amount of support from the DIPG community. She mentioned that there was an online support group through Yahoo, as well as certain individuals, who were always there for her and ready to answer any questions she had. Their support was unconditional, and she said that having them to lean on was “instrumental” in helping her. Capturing important moments on camera was also very therapeutic for her, and her main piece of advice to families who have recently joined the DIPG community is to do the same. “Take a lot of pictures, even things that you think you won’t want to remember.” She believes that even the difficult moments are those that will live in your heart forever. 

Nearly a decade has passed since Caleb’s battle with DIPG, but there is still a lot of research and work to be done when it comes to finding a cure. The path to ending DIPG is far from over, and CRF is committed to continuing forward in the hopes of helping kids like Caleb who deserve to still be alive today.

by Ranjani Anirudhan

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