From Grief to Giving: Denise Kuchinski on Joy, Loss & Xander’s Legacy

About Me – Denise Kuchinski

Graduated with a BS in psychology from Florida Southern College

I worked at a facility for emotionally disturbed children and received a promotion to be on the clinical staff.

Then I moved to Charlotte, got married and focused on raising my two children, Xander and Eva. I became heavily involved in volunteering time to their schools.

On February 13, 2015, our eight-year-old Xander was diagnosed with a very rare brain tumor called medulloblastoma with melanotic differentiation, this was an extremely rare brain tumor that only 20 other children in the world had ever had, but none survived. Xander endured a six-hour brain tumor surgery in which they were able to get 99% of the tumor removed, but unfortunately it had already metastasized to his brain and spinal cord. Xander would spend the next 8 1/2 months in chemo and radiation, he would endure many trips to the emergency room, throwing up several times a day and ended up with a feeding tube because he was unable to eat.

During that time, my husband and I refused to let Xander just suffer every day so I created a fun calendar on a big poster board and every day he would run excitedly to the fun calendar to see what new adventure awaited him. If he was feeling up to it, his dad would take him to Carowinds or we would go to Chuck E. Cheese, the zoo, anything to cheer him up. We even went on a few trips to the beach and the mountains, his feeding tube was his constant companion. If he wasn’t feeling well, then we would have a friend drop over with a surprise gift, anything to cheer him up and distract him from the horror he was going through. And much to our surprise it worked! Xander was in a state of peace, acceptance, and yes, even sometimes joy during this time of his life.

I witnessed firsthand the power of a simple act of kindness and moments of joy, and how powerfully that can shift someone’s perception, and uplift any situation! Despite all our efforts, on October 25, 2015 Xander would go home to heaven. I would spend the next few years healing and gathering my strength to establish Xander’s Acts of Kindness Foundation. We are partnered with Atrium Levine Children’s Hospital, and we give joy to children battling cancer, who are from low-income families. These are the families who truly need it the most!! We send them to The Great Wolf Lodge, the beach, the mountains, concerts, Carowinds, gift backyard place sets, bedroom makeovers, purebred puppies, anything we can do to bring them joy during the greatest fight of their life. Of course, my inspiration for this was my son, what we did for him during his time of suffering, and seeing the difference it made during his battle convinced me that I could help so many more children and ease their suffering, even if just a little.

We called it Xander’s Acts of Kindness Foundation for two reasons: one being that Xander himself was an exceptional child, always doing things for other people and buying his sister and friends gifts. And number two, because of the acts of kindness we bestowed upon our son when he was sick and seeing the difference it made during his cancer journey.

I have also implemented a new program at Atrium Levine Children’s Hospital called Xander’s Character Crew 🎈

Twice a month, we have superheroes and princesses visit all the children in the hospital. So now when a child is going for chemo or radiation, they can look at the calendar in the hospital and get excited that there will be a superhero or a princess there waiting to bring a smile to their face!

I have also started a program for the moms who have children with cancer four times a year. I feel strongly that if I’m able to help support the moms in some small way—given that I am someone who understands what they are going through and also to help them connect with one another so they have a support system—this could be another part of my calling. We do special things for them like a painting and wine night, makeovers, or a night at Spare Time to bowl, eat, and connect with one another. In addition, every December we host a toy drive for all the kids who are hospitalized at Atrium Levine Children’s Hospital for the holidays.

Three years ago, we were invited to participate in Fork Cancer, a celebration of life. Fork Cancer was founded by Mark Allison, who is a local chef. He lost his wife to cancer in 2015 and decided to do something to benefit local nonprofits who help support cancer in some way. Mark has eight of the best local chefs in Charlotte provide a unique culinary experience while supporting local nonprofits that benefit cancer. This year Xander’s Acts of Kindness is honored to be included for the third year in a row as well as The Meggs Foundation which supports young adults battling cancer.

It is my deepest desire to bring joy to these sweet children and in doing so bring joy and some peace to their parents as well. I am so grateful and humbled to be able to do this work and the joy and healing it has brought me has been my greatest gift and surprise.