Xander Kuchinski was born on May 12, 2007. He was a bright, joyful, funny, and loving little boy who lit up every room he walked into. He had the brightest personality, endless energy, and a way of making everyone around him smile.

 

When Xander was just 7 1/2 years old, he began having headaches and throwing up. February 2014, after a day of nonstop vomiting, his parents rushed him to the hospital. An MRI showed a large tumor in the back of his head, and the very next day, on Friday, February 13, Xander went through a three-hour sedated MRI followed by six hours of brain surgery.

 

His doctors were able to remove 99% of the tumor, and his family was so grateful. But soon after, they learned the cancer had already spread to his brain and spinal cord. Even more devastating, Xander’s tumor was not a typical medulloblastoma. It was an extremely rare form called medulloblastoma with melanotic differentiation. There were only 20 children who ever had this specific type of brain tumor, and none had survived. Still, the Kuchinski family moved forward with complete hope and determination.

 

Xander went through chemotherapy and radiation, often daily. Through it all, he never complained. Even when he was weak, sick, and hurting, he would tell his parents, “I’m good,” even when they knew he wasn’t. His mom, Denise, researched every possible way to help him adding supplements, herbs, oils, energy healing, special diets, and anything else she thought might give him a chance. But Xander continued to get sicker, he stopped eating, threw up constantly, and needed a feeding tube to help him get any nutrition at all.

 

After chemo and radiation, Xander weighed only 42 pounds at eight years old. When the treatments did not stop the cancer, his family searched for other options and traveled to Houston, Texas, for an alternative treatment they hoped would be the answer. But after a few weeks, Xander could no longer walk. An MRI showed the cancer had spread throughout his entire body. His doctors told his parents there was nothing more they could do.

 

The Kuchinskis could not accept that, and they kept fighting for him. But soon after, Xander began having seizures. He was taken by ambulance to the hospital, where doctors were able to stabilize him. A few days later, after returning home, he had another seizure and was rushed back to the hospital. After that, Xander was never the same. He could no longer speak, walk, or do the things he once could. He spent the last two weeks of his life in the hospital with his family by his side.

 

On Sunday, October 25, 2015 Xander’s parents were with him when his heart rate suddenly dropped. He had been unconscious most of the day, but just before he took his last breath, he opened his eyes and looked right at his mom. She told him “Xander, it’s okay. You can go to Jesus. You can go to the light. We love you so much.” And then he was gone. They held him in their arms for hours before finally having to let him go.

 

Xander was such a bright light, maybe too bright for this world. During the 8 1/2 months he battled cancer, one of the hardest things for his family was watching him suffer and feeling helpless to take that pain away. So they did everything they could to give him something to look forward to. His mom made a fun calendar filled with special plans, little adventures, visits, games, and surprises. Every day, Xander would check the calendar to see what new adventure awaited him. His parents took him to the beach, spent time at Yogi Bear’s Jellystone Park, went to Chuck E. Cheese, Sky Zone, and Carowinds when he felt well enough. Friends came to visit, people dropped off gifts: his family made sure he had moments where he could simply feel like a kid and have fun!  The most remarkable thing is as Xander’s mom was planning fun things for him, he was doing acts of kindness for his friends and family! He would take his own money and go shopping for his sister or  wrap up presents for his friends, he was constantly thinking of ways to make others happy.

 

Those moments of joy and Xander’s kindness for others, became the heart behind Xander’s Acts of Kindness Foundation.  Xander’s mom started this foundation to bring joy to children with cancer from low income families, and in this way, she strives to continue Xander’s legacy of kindness.  Her hope is that the foundation can help these kids experience happiness and fun during their most difficult journey. Our prayer is that the joy they experience will give them the hope and strength they need to keep fighting!