Hello, first of all, let me say thank you for asking to include my son Chase’s story. I have followed so many of your precious children’s journeys. At the time of Chase’s diagnosis, it never entered my mind to make a page for him or to even find the many groups I am now a part of for support. We did ask at the clinic if there were any other children with DIPG at the time Chase did. There were not any ..thank goodness. I know I have left out so very much because there is so much to say about Chase, our Superman. With all of this, we promise to fight for a cure for DIPG the rest of our lives.
Chase was my happy boy. Always smiling, never let anyone get him down. When he smiled his eyes would crinkle up and almost disappear. I would drop him off at school and he would smile and give me the thumbs up over and over again until I would have to say..GO in Chase! I told Chase once the best way to make friends is to say nice things to them. So he would tell his teacher, she had a nice shirt on that day, tell a friend he liked their shoes..their smile..their whatever. Chase was very active, I guess almost hyper. I told my husband Chase would be the one the principal would be calling about and I was right. Chase would turn those big blue eyes on the man, try to keep from smiling and look contrite. Later the principal told me many times, he had to leave his office to keep from laughing at Chase. It was never anything really bad but things he had to take his punishment.
Chase was my happy boy. Nothing seemed to get him down. The baby of the family so yes, I guess a little spoiled. Even more so when he was diagnosed. How can you not? He was very smart, clever, and prone to mischief. Chase was also my eater. He thought Coke and sodas were medicine. He loved turnip greens, fruit, juices..all the healthy stuff except when it came to candy, ice-cream, and cookies. Chase played soccer and baseball. We spent very much time at the ballpark. He was a very friendly kid and loved to give hugs..even to his soccer coaches. Chase loved his brothers and loved to pick at them also. I used to say..don’t come telling on someone unless it involves blood. Chase loved video games and usually won against his dad and brothers. Scooby Doo and Diary of the Wimpy Kid books were some of his favorites. Our tv dvr is still set in my bedroom to all Chase’s favorite cartoons and shows. We have never changed it. I saw his first kiss given to a little girl on the soccer field. It was at practice and they were doing a drill. She and Chase were at the goal and he reached over and pecked her on the cheek. She just beamed a great big smile and so did he. They were 5 yrs old. I was speechless because you know now, you don’t know how people will react. Everyone there laughed and laughed. Her father called him the Kissing Bandit the rest of the season.
He was very active..almost hyper. I started cutting back on his sugar, especially in the mornings. He learned to like his oatmeal with less sugar. I would pick him up at school and ask how was your day? Chase would sometimes say..Mom..I think you put too much sugar in my oatmeal. lol Always my fault.
Chase was a Trekkie. My husband collected all the seasons and every time the show started Chase would say..come on Mom..and start humming the Star Trek tune. He loved transformers, army men, video games and Nascar. A Kasey Kahne fan. Chase played baseball, soccer and one year of basketball because he couldn’t keep his eyes off the crowd instead of the ball. lol Chase loved football too. He was an LSU fan with us except for his brother that went crazy and became an Alabama fan. Chase got confused and at the clinic once picked out an Auburn beanie hat. He got an AL jacket from his grandmother. Some days he would wear an LSU shirt, AL jacket and the Auburn beanie. He got so many stares. We just called him a football fan.
DIPG then took all these events and made them memories for us.
Two weeks after Christmas 2009, Chase came home from school complaining of blurry vision. I was thinking ok..a kid needing glasses. I went to make an appointment for him and all the eye doctors were very busy and it was going to be weeks before he could be seen. A couple of days later, blurry vision turned into double vision and I knew something was not right. After a visit to the eye doctor who had me take him to our regular pediatrician, an MRI was set up. January 26, 2010 is the day our world came crashing down. DIPG came into our lives. My husband and I were like ok..so a brain tumor..what can be done for it..how to cure it. We were so very ignorant of what DIPG really was..a monster. Four little letters that I now know more about than I ever wanted too. Learned what Scanxiety was also…a deep knot in your stomach as you awaited the news..good, bad or the same.
We had to decide between St. Jude’s and Children’s Hospital in Birmingham, AL. Both great places. Both had the same trials going on. Chase was a homebody. We chose Birmingham because it was only an hour and half from home. February brought radiation for 6 weeks. Chase thought it was all such an adventure. No school! We stayed at the HOPE Lodge..another wonderful place. I got Chase hooked up with the teacher at Children’s and she coordinated with his school. My husband and I tried to keep life as normal as possible. So Chase had to do some homework. I tried my best to keep some kind of schedule to keep us sane, I guess, and help pass the days away from home. We came home every weekend. His real 5th grade teachers even came by two or 3 times a week too. Chase got on a trial drug, Temador, at a clinic. It lasted through several months. During that time, he was treated like royalty. No waiting at the clinic. That spoiled us until the drug stopped working. April 2010 brought our Magic Moments trip to Disney World. May brought his 10th birthday. A big party with all of his classmates. After that, we got into the routine of the clinic several times a week, blood work, MRI, Chase was such a trooper through it all. Then the honeymoon period was coming to an end. He got his port put in and after we figured out how to numb it really really good he was ok with it. Then long clinic visits that lasted almost all day long started.
Whenever Chase took a nap, I was on the phone. Calling doctors, hospitals..always trying to find alternatives. It was always the same answers. I called churches asking them to put him on their prayer lists.
I read so many of the effects of DIPG that other children go through. My husband and I know that if there is luck in DIPG, Chase had some. He never really got sick. Only one major headache during the time. His balance was the biggest problem. His speech was very slurred. Chase still had double vision but you would have never known it. We had a really big Christmas in December of 2010. A group of my friends, really like my sisters, sent Santa Claus to visit him..A real Santa! Chase was so very very happy and loved the party we had. Almost a year to the day of diagnosis, Chase had a seizure. What I call it, not what the doctors called it. He lost his ability to speak over night. That week is the only time Chase ever spent the night in the hospital. We were there for a week. Chase was so very sad. I have to tell you I was crazy..I know I was crazy. Maybe I still am, I don’t know. His hair that came in so thick and curly..like my dad’s, started falling out by the handfuls. I was obsessed with keeping it off his pillow case. I begged them to get someone to come and cut his hair. We had started re radiation again but it didn’t work. Later that week we were sent home with Hospice. When he stopped talking, I started racking my brain over and over, sometimes trying to remember what we said. I know it was I love you more than the freckles on your face and he would say I love you more and we would always end with I love you Infinity and Beyond. Chase slept with us most of the time when he got worse. I would hold his hand till he fell asleep. I became a clown for him. Anything to feel him chuckle. His dad and brothers played his video games for him. The Food Network channel became all he wanted to watch. Milkshakes all the time.
Hospice came and so did the hospital bed, the wheelchair, etc. We sat down with Chase and told him that he would never have to go into the hospital again. That the bed in the living room was for him when he was tired. That he could go anywhere he wanted. The only night he slept in the hospital bed was the night before he passed. Chase was carried up and down the stairs by his dad and brothers if he wanted to spend time in the den. Lifted into his wheelchair to go outside or to come sit at the kitchen table with us at meal times. We communicated by letters. He would blink for a letter and we would figure out what he wanted. Usually it was to ask, when am I going to be better? We talked with him and told him that God was going to make him all better..better than any of us here on earth. We spoke on how we would decorate our mansions in Heaven. Chase loved swimming and water slides so he has water slides going to every room. A big pool with Dolphins to swim with him and all his friends there. We laughed over imagining his great grandmother who passed a few months earlier sliding down his slides. We read Heaven is Real many times..the children’s version. A Hospice nurse had a friend with a small plane. Chase and his dad got to go up for a ride. Chase’s eyes were so bright with excitement when they landed. My Chase was back just for a little while. Then the sad look came back. All the journey was hard but seeing him so sad really ripped my heart apart. Chase passed on April 25, 2012 at 4:45 p.m. We were all by his side. Our hearts are broken forever. Chase was the happy light in our lives. Now we struggle to find the light. My husband told me he was the first to hold Chase when born and the last to hold him as he was taken from our home. His service was so very nice. So many people attended. Chase is buried behind our church, just right down the road from us.
My husband and I always did everything with the kids in mind. Meals at the table, all the sports, going to hockey matches, baseball games, camping, family outings…everything so they would have great memories of their childhood. Now it was so we could have the memories. Oh how I miss my boy but I know one day we’ll be together again and we will never let go.
Submitted by Chase’s mom, Terri