Garret & I: The Garret Collins Legacy Fund

In May of 2019, Garret started to have some pain in his lower back and leg. We went to the doctor, who suspected sciatica nerve pain and recommended some stretches. When that didn’t help, we tried the chiropractor. Over the next few months the pain would come and go. Eventually, Garret started to lose his appetite, lose weight, and sleep more than usual. So, at the beginning of August, we took him back to the doctor. We were sent for an MRI and on the afternoon of Friday, August 9th, we heard the phrase no parent ever dreams of hearing - ‘it might be cancer.’  Since it was late on a Friday, they sent us home for the weekend with those devastating words.  

We returned Monday for a biopsy and received confirmation that Garret had malignant cancer cells. Tuesday, they did a PET scan; it was widespread. The main tumor was in Garret’s left pelvis, with spots on both legs, arms, lungs, and his upper spine. On Wednesday, they put in a port and on Thursday, Garret received his first round of chemo. While we wouldn’t receive confirmation for two weeks, we began the treatment protocol for Ewing sarcoma.

And so began our new reality. With hospital stays every 2 weeks, we were continually packing and unpacking in an attempt to make our almost week-long visits as comfortable and “fun” as possible. At home, we had daily temperature checks, regular injections, and constant blood work for labs.

Garret took this new and scary way of life in stride. He did the hard things, because he knew he had to, and still made time to do the things he enjoyed whenever possible. He never complained or questioned ‘why me?’. This was just what we were doing now.

In November, we made the trip to St. Louis to prepare for the start of proton radiation. He received a PET scan while we were there. Amazing news - there was no evidence of disease! We were ecstatic. Garret continued treatment through January, receiving over 30 doses. His doctors said the radiation would likely cause his left leg to be shorter than his right as he grew. Garret also experienced severe radiation burns to the treatment area. Layers of skin peeled away. We did our best to keep him as comfortable as we could. 

In February of 2020, Garret got to go on his Make-A-Wish trip. He wanted to meet Richard Rawlings, owner of Gas Monkey Garage in Dallas, Texas, and star of the TV show Fast ‘N Loud that Garret liked. Garret toured the garage, saw some of the cars in Richard’s collection, and picked which car he got to go for a ride in. Richard took him out in his brand new 2020 Ford GT and Garret was grinning ear to ear when they got back. He said they got up to 138 miles per hour!

By April, Garret had finished chemo and in May, he had 10 days of whole lung radiation. His scans were still good but, because of the widespread disease upon diagnosis, we decided to enroll him in a clinical trial in Los Angeles, with the hopes of preventing relapse. We had to travel to LA every 3 months for scans and medicine refills.

In November of 2020, Garret noticed a bump on the back of his head. He had surgery to remove it and, four days before his 14th birthday, we found out the Ewing sarcoma was back. We were devastated. He remained on the clinical trial and received more radiation but, by April of 2021, the bump had returned along with 2 spots in his right lung. Garret was started on relapse treatment and the following year we tried another clinical trial, this time in Cleveland. It didn’t help.

We continued with chemo, radiation, and additional surgeries to remove the remaining tumor, but in September of 2022 Garret started having pain in his back and underwent another PET scan. This time, the cancer was everywhere. We made the trip back to Cleveland hoping for a miracle but on November 4th, they told us it was time to go home.

Back home, Garret’s local oncologist asked him if he had any questions, or if he was scared about what would happen. Garret said he was worried about us, his mom and dad. He didn’t want us to have to worry or see him go through this. This brought tears to his doctor’s eyes and his doctor said, “You’re a good son.”

And he is absolutely right, Garret is the best son any parent could ever ask for. During another conversation we talked about what was to come, how hard, sad and awful it was, and how we should acknowledge those feelings and emotions. We also talked about how short life can be, and how we don’t want to dwell on the bad times and lose our chance at any good moments. We told Garret he’s always been that way - he always sees the good - and he said ‘I’m not changing that now.’