Niko: Superhero, Cancer Warrior, and Lego Extraordinaire
“There is light, even on the darkest days,” says Karla Chavarriaga, mom to Raindancer Niko, who is now in remission and gaining his strength back every day. At only 5 years old, Niko was diagnosed with B-Cell Leukemia, enduring 3 years of active treatment that included ER visits, complications, allergic reactions, fevers, vomiting, nosebleeds, and many sleepless nights.
The Chavarriaga family were blessed with the support of their community throughout Niko’s journey. But meeting Sara and The Sweet Julia Grace Foundation led to lifelong friendships with families who may have had different diagnoses but similar circumstances.
When Niko was five and his sister was still a baby, Karla posted on Facebook in search of a double stroller. Niko’s immune system was compromised and the family was seeking an outlet for getting fresh air since they weren’t able to go to public places. Niko’s muscles were weak from the steroid part of his treatment and he had aches and pains in his ankles from the chemotherapy. “A lovely soul saw my post and passed on my information to our angel, Sara,” says Karla, who says she will be forever grateful for the used stroller that was gifted to the family that day.
Sara connected with Karla and visited the family in their home, and that’s how the Chavarriagas became a Raindancer family. “It's like we were adopted by an angel and all her helpers,” says Karla.
Being part of this Foundation has been like being in a huge family. -Karla
There were times that Niko was admitted to the hospital for up to 10 days at a time, and it became difficult to keep up with the simple things. During one of those times, SJGF sent an army of volunteers - a youth baseball team - to clean up the backyard of the Chavarriaga home. “It meant so much to come home to a yard that was livable again,” says Karla. The trees were trimmed, mulch put down, and the doorstep adorned with fall flowers. The sight of the front door brought Karla to tears.
My son mattered to the community and to this new family that had wrapped us up in their arms. -Karla
In 2017, the Chavarriaga family was chosen to be the recipients of the SJGF Christmas surprise celebration. The community showed up in force and surrounded the family’s home to sing carols and show support. “We were overwhelmed with gratitude to see so many people gathered for us. The singing, the lights, just thinking about it still gives me chills and makes me want to cry.” On top of that, the Christmas tree in the home was overflowing with gifts for the whole family. Karla says they felt so much love and so cared for.
Karla says if she could go back and tell herself anything on day one of Niko’s diagnosis, it would be a warning. She would remind herself that there really would be a light on the darkest days and “you will get through this.”
Karla's words of wisdom to any new parent on their day one:
Take it one day at a time; things change at a drop of a dime. Soak up the good moments because they will carry you through the bad ones.
As of July 2021, Superhero Niko has been off treatment for 8 months. He is growing like a weed, says his mom, and is so strong....like a tank. At the beginning of treatment he lost approximately 10% of his weight so now seeing him eat, enjoy food, and look healthy is an amazing sight for his parents. He now has the muscle strength to play soccer, ride his bike, and enjoy hikes with his dog and family.
Niko's family now helps SJGF every chance they get. They volunteer at events, help bridge the gap between Sara and Spanish-speaking Raindancer families, and Niko's dad even dresses up as Frosty during Christmas to deliver Christmas cheer to other Raindancer families.
Along with volunteering, every September Niko hosts 'Niko’s Lego Drive' and collects Legos for children at INOVA Fairfax Hospital, where he spent many long days. When Niko decided he wanted to gift Legos to other sick kids the family had the idea of running a Lego drive during the month of September, so they could also raise awareness for childhood cancer. Each year, they have a new record of Legos collected.
My wish for the future is that there is a cure for cancer. -Niko, 10 years old