Grant Steensland was a special little boy, so says his mom, Pamela, and his dad, Ryan (me). He had a knack for creating friendships with kids of all ages. His ability to connect with adults was especially unique. He enjoyed spending time with his friends from school and with his cousins and grandparents. He loved to play basketball and golf. Most of all, Grant had a huge heart and a capacity for life that blew us all away.
At 6 years old, in the summer of 2009, Grant was diagnosed with brain cancer. He had an inoperable brain tumor. A few days after his diagnosis, we found out his inoperable tumor was called diffuse intrinsic pontine glioma (DIPG). With this diagnosis, our family began a nine-month journey that would forever change our lives.
The symptoms that led to Grant’s diagnosis came on fast, and within days of the diagnosis, it became very hard for him to continue to do the things he enjoyed doing. He could not understand why he could not do certain things, or what was wrong with him, nor could his 4-year-old twin siblings Blake and Samantha.
Our only thought when we were faced with this information was “How do we fight it?” What we found out: There was no “right” strategy, no statistical proof that any treatment would prolong his life. The bottom line was that Grant’s condition had no cure. That ultimately, Grant’s treatment would give him the best chance of extending his time while maintaining his quality of life.
Grant knew he was sick. He showed so much strength throughout a very scary process. We took his lead completely, as he was the kid who was diagnosed with this horrific disease, whose life was turned upside down, and he never once asked, “Why me?” He never complained about his ever-changing body and abilities. He took everything in stride, and if he did not have the ability to do something such as ride his bike, toss a football, walk up stairs, he gravitated toward what he could do and did not look back.
Every night Grant said the same simple prayer: “Thank you for living in my heart, watching over me and guiding my life. Amen. “We prayed every night that the Lord would put his arms around Grant and carry him through the rest of his journey.
Therefore, once again, we will take Grant’s lead. We launched Grant’s Ginormous Gift Foundation in 2010 with the hope of funding research to aid the fight against DIPG. We made the decision in 2020 to fold this foundation into the ChadTough Defeat DIPG Foundation. Our feeling was ChadTough had a vision that we shared and the infrastructure to make progress toward our common goal.
We miss our son Grant terribly, and there isn’t a day that goes by that he isn’t in our thoughts. Our hope is that through organizations like ChadTough, DIPG can one day be a cancer that is survivable.