Age: 9 years old

The little boy in this photo is Timothy Powell Jr. He is a smart, loving, nine-year-old boy who loved playing football, basketball, and running around like a normal kid. In December 2017 all of that changed. His mood changed all the time–he would get annoyed so quickly.

He didn’t want to go to school and his smile disappeared. At his school Christmas program, as he was leaving the stage with his class, I noticed him walking down the stairs, holding on to the rail with both hands in an odd way that he would have only done if something was wrong. That day I made him an appointment with the eye doctor. She asked if he’d seen a neurologist before because she noticed his left eye wasn’t moving and he was blinking slowly. Of course, my heart dropped and I was instantly freaking out, but I never, ever thought, “my child has a brain tumor.” That never even came to my mind. We went to a doctor the following day for an MRI, and that night I received news no parent should ever have to hear, “Your son has a mass on the back of his brain; get him to Children’s Hospital.”

Our minds were in a fog but we honestly still didn’t even think about the doctors telling us that Timothy had an inoperable, incurable brain tumor, also known as DIPG. The doctor said there was nothing they could do for him and that he had 9-12 months, maybe 18 months to live. My heart and his fathers were completely shattered–torn out, broken. In June of 2018 he was on a clinical trial that was killing him, and the doctors told us he had 2 weeks to a month to live. We came home, put him on hospice, and just loved on him as much as possible. Timothy was always the quiet kid but this quiet kid quickly turned into a fighter.

He fought hard that month, and the 3 months after that when he passed 7 kidney stones. Now, here we are 18 months later. He is on another clinical trial that isn’t going to save him, but will hopefully keep the tumor from growing. That’s what we hope for every month.

It’s sad; we should be saying that he’s going to take this medication and be cured, but that is not the case. We have never told Timothy he has cancer, and we have never told him he’s going to go to Heaven. His father and I have felt, and still feel strongly about this decision. He’s too young to hear that, so he knows he has a bubble on his brain and we’re doing all this to get it to go away. He has his good days and bad days, but he’s here with us and that is the only thing that matters to us. This is our only baby. He is stronger than both me and his father. The first photo is before DIPG and the second is after steroids from DIPG.

Written by Rachel Jackson, mother of Timothy