Treasure Every Moment

Tyson’s Story

Written by: Maggie Waid

In April of 2016, we finally got the phone call we had waited so long for. Our fertility treatments worked, and were expecting our first child. We were so excited to meet our baby around Christmas 2016. On December 30, 2016, Colt "Tyson" Waid, Jr. was born. He was perfect and such a happy baby. Over the next couple of months, we noticed he was not meeting some of his milestones and not using his right arm and keeping his right hand clenched. At 4.5 months old, we found out that Tyson had suffered a major stroke while in utero. As parents, we were scared to death when we heard the news, not knowing what the outcome and struggles were going to be for our baby boy for the rest of his life.

While we were unsure of how Tyson would be affected by this, we knew we would do everything in our power to ensure he received everything he needed to have the best life possible. As time passed, we began to adjust to Tyson’s schedule. He began therapy at 6 months old, had visits to the ophthalmologist for his eyes, saw a neurologist for the stroke and seizures, and saw an orthotist for his hand and leg braces. During all of this, we were blessed with the news that we were expecting again. We welcomed baby sister, Averie Marie Waid, into our family in April 2018. This was an adjustment, and we were nervous. Tyson required more attention than most kids. He still wasn't able to walk or talk at that time.

With time, Tyson began to excel. He was very strong with his left side and found ways of adjusting to his weakness. He was crawling (or should we say scooting). It was the cutest thing ever, and boy could he go! Then before we knew it, he began walking around 17 months old. We weren't expecting him to achieve this goal until around age 4-5 because of the size of his stroke. Over the next few months, he kept gaining momentum. He was able to play on his own and get around the house. In November 2018, he began using his first words, mom and dad. There was nothing sweeter than hearing his high pitch voice. We love this boy so much, and his smile would melt anyone's heart. We were so proud of him and all of his progress he had made. He was defying the odds stacked against him.

In June 2019, we started to notice Tyson regressing in his physical abilities. He was unable to hold his balance, bear weight on his right side, he had excessive drooling, and his "good eye" began to cross. He lost most of his speech and mobility very rapidly. We called his neurologist and got him checked out on July 5th, thinking he may have had another stroke. They ordered and MRI, but we couldn't get in for 4 weeks. While waiting for the MRI, he continued to decline daily, so on July 15th, we took him to the ER at Scottish Rite in Atlanta. They admitted him and did and MRI first thing the next morning. We weren't too worried since we thought it was a stroke and just figured we would be starting over physically with everything. We could handle that; we had done it before.

On Tuesday July 16, 2019, our life turned upside down. Our baby boy was diagnosed with brain cancer. We were shaken and upset, and then we talked to the oncologist. Our hearts were broken. Tyson has been diagnosed with a DIPG- Diffuse Intrinsic Pontine Glioma located in his brain stem. Surgery was not an option due to the tumor location and chemo will not even touch this type of tumor. The only option we had was to start steroids and radiation in hopes that the tumor will shrink. This form of cancer is rare, aggressive, and does not have a good outcome. Tyson will receive 30 treatments of radiation at the Winship Cancer Center at Emory in Atlanta over a 6 week period. He will get a follow up MRI 4 weeks after radiation to see if the tumor has shrunk any. When it is needed, Tyson can receive 15 additional treatments of radiation to try and shrink it again. There are also clinical trials that we hope he can participate in. For now, we are taking things day by day and trying to live as normal of a life as possible. We treasure every moment with our children and know that Tyson is in the fight for his life. We are holding onto our faith and praying that our son will be a miracle.

If you would like to follow Tyson's journey, you can go to https://www.facebook.com/pages/category/Community/ Team-Tyson-505443243598862/

There has been a GoFundMe set up for our family to help with expenses at https://www.gofundme.com/team-tyson- strike-out-cancer

#TeamTyson #TysonStrong #DIPGWarrior