To Infinity and Beyond

Tyson’s Story

Tyson Waid was a very active and loving toddler and an awesome big brother who loved all sports (especially baseball), Toy Story, and 90's country music.

He was a precious boy who overcame many obstacles in his short time here on earth. 

He suffered a stroke while in the womb and was diagnosed with cancer at five months old. He started therapies at seven months old to help overcome his physical deficits and side effects from the stroke. We were told he wouldn't walk until 4-5 years old, but he excelled and took his first steps at 17 months old. He was booming and doing so well despite having a stroke.

Around the end of May of 2019, we noticed a decline in his physical abilities. For weeks, we tried to figure out what was going on and kept reaching out to his doctors. The neurologist thought that he may have suffered another stroke. On July 15, 2019, we took him to the ER at Children’s Healthcare of Atlanta (CHOA) because he declined physically so quickly over a 5-week time frame. On July 16, 2019, after another MRI, it was discovered that Tyson had a tumor in his brain stem called Diffused Intrinsic Pontine Glioma (DIPG). This is a fatal form of cancer that has a 0% survival rate and people are given around 9-12 months upon diagnosis. We were told to go home and make memories and to enjoy the time we had left. Treatment options were limited because where this tumor is located and how it grows, and chemo would not attack this tumor. He was allowed to have 30 days of radiation to try and shrink his tumor, allowing us to buy more time, and completed that in September of 2019.  He gained most of his mobility back and even some speech. We tried our best to make as many memories as possible for him, his little sister, Averie, and our family. But in March of 2020, we noticed that some of his symptoms were coming back. After much thought and discussion with his care team, we agreed to go ahead with one more 12-day round of radiation to try and shrink the tumor once more in May of 2020. Although his tumor shrank some, he never gained his ability to walk on his own again.  

We took as many trips as possible despite the pandemic. We made so many wonderful memories with our kids during this time. After much thought and consideration, we decided to try and find a clinical trial to at least help gain knowledge in this horrible disease, and would not hurt Tyson, or affect his quality of life. We finally found one we were comfortable with, and that he would qualify for, so we reached out to the research team. He was enrolled in the “9-ING-41” clinical trial in Charlotte, NC in September of 2020, and we moved there temporarily as a family. After 2.5 months, his follow-up MRI showed that his tumor was not responding and was still growing, so we moved home immediately to be in the comfort of our home and be surrounded by our family and friends. Tyson passed away peacefully at our home on December 24, 2020, after a 17-month battle, just six days before his 4th birthday.  

We have tried our best to carry on his memory and share information on this horrible cancer. 

We want Tyson to be remembered as a fighter who overcame so much more than just his cancer diagnosis. 

He had the sweetest personality and could light up any room as soon as he came in. Pediatric cancer is the most underfunded of all cancers and it receives less than 4% of all funding. This amount is split among all of the types. Please share his story and what this horrible disease is. DIPG is not rare. Our children deserve more.