Believe. Devon’s Story

I remember meeting Devon and seeing what DIPG does… Madeline left in 5 days.  I never saw the progression.  I walked into Devon’s house and I saw a mom caring for her son, friends visiting, family surrounding him.  I still see that today.

Today I share Gabby’s words- a sister’s perspective.  Her reason for Going Gold… Read it all.  Share.  Comment.  Engage.

Devon’s Story

By Gabriella LaPrade

My name is Gabriella. I have three amazing siblings; David who is 25, Alexa who is 22, and Devon who would be 21 in February. Growing up with these three were the best days of my life. My favorite and best memories are with at least one of my siblings by my side. David is the oldest and the goofiest, I am the mature/responsible one; the care taker, Alexa is the entertainer and the drama, and Devon was the little brother. You know how little brothers are, especially when they’re young! Devon always pushed our buttons….ALWAYS. But he was also a worrier, like my mom. Always tattling and calling the older siblings out. But ya’ know, those are the good old times. I’d give anything to have them back.

We would get into fights, laugh constantly (even when our mom said to stop laughing during dinner so “we wouldn’t choke” we continued to laugh), and we loved each other unconditionally. We definitely treated Devon differently sometimes, which he never deserved. To be honest, he was… much different than we were.

My siblings and I were always involved in sports or dance classes. We tried to get Devon into all that, he would try… but he wanted to do different things. He was into archery, fishing, camping, fixing things or building things (he was very handy), and he loved basically anything outdoors. We, unfortunately, did our older sibling duties and picked on him a lot for being different than us.

When Devon was 14 he started complaining of stomach aches and headaches. Being the older siblings that we were, we honestly just thought he was being dramatic. He couldn’t possibly have aches like that all the time…could he? He had multiple doctor appointments, that never really came to any conclusions. My mom insisted that it was a hernia. The doctors thought maybe he was constipated and to give him Miralax, otherwise nothing. We kind of brushed it off after that and thought Devon’s problem was solved.

My sister and I were All Star cheerleaders at the time. We had a competition in Rhode Island one weekend in May in 2011; it was Mother’s Day weekend, actually. That weekend was one of my younger cousin’s First Communion party. We left my brother with our family. My aunt called my mom and said that something looked wrong with Devon. It was like he was walking differently and she had a bad gut feeling. She said that we really needed to bring him to the ER. My mom told her, if she was going to the hospital on Mother’s Day then so was my aunt. When we got home from RI, my siblings and I went to my grandmas for the night while my mom, aunt, and cousin took Devon to the hospital. David, Alexa, and I fell asleep listening to Johnny Bravo. In the middle of the night we get woken up to our grandma yelling…

“Wake up, wake up. Your brother has a brain tumor.”

“What do you mean, what are you talking about?”

“Get up. We need to go to the hospital right now.”

That is the moment our world changed forever. Everything moved in slow motion for the rest of this night. There were so many questions I had, so many regrets, so many things I wanted to tell Devon. I am sorry for being a terrible older sibling, sorry for picking on you, sorry your life was about to change forever. On the way to the hospital there was so many more terrible thoughts going through my head.

None of which I will reveal.

Once we got to the hospital, it was like a scene from a movie. I walked into the hospital through two sets of double doors into a waiting room with many of our family members. I was embraced by every single one, and told multiple times that it would all be ok. The Dr. that diagnosed Devon came out to talk to my siblings and I. He drew a brain on the tissue box and pointed to where Devon’s tumor was. On the pons of the brain, an inoperable spot. I couldn’t move… I couldn’t breathe. My first question was WHY!? Why Devon? Why inoperable? Why on his brain? Why wasn’t it me?

My mom came out of Devon’s room and told us that we needed to go and see him but only 2 of us could go in at a time. David and Alexa went first, I needed a minute…or ten. Then my mom came back and said that Devon wanted to see me. That’s when I lost it. I started crying and couldn’t stop…I started walking towards his room, but saw a bathroom and darted for it. I slammed the door and fell to my knees on the cold bathroom floor. I couldn’t do it. I couldn’t see him sad or in pain. THAT’S MY LITTLE BROTHER! Please, God please, don’t do this to him.

I finally calmed down after about 20 minutes and walked into his room. He looked happy… why did he look so positive when he just got diagnosed with the worse news of his life?

My mom said that once they got to the hospital they were seen by multiple doctors and specialists. Once he was finally diagnosed, he looked at my mom and said “It’s ok Mommy, I’m going to fight this. I have Tyler with me.” Tyler was one of Devon’s friends/classmate that passed away from cancer a couple years prior.   Then he asked for a sandwich, to lighten the mood I’m sure.

He stayed this positive the whole time he was fighting. He kept this promise he made to my mom.

The doctor pulled my mom aside and told her that Devon didn’t have long to live. They were unable to operate and it is terminal. WHY? Why is his life being taken from him?

From that moment on, my mother did absolutely everything possible to save him, to give him the best life she could. My mother stopped working and took tons of time off to spend with Devon. She stayed up hours on end and barely got any sleep looking for any and all research on this devil thing called cancer.

D.I.P.G. Diffused Intrinsic Pontine Glioma.

A mass that sits on the pons of the brainstem. The pons controls all functions that we take for granted…breathing, eating, walking, talking, etc. Only 200 children between the ages of 4 and 11 get diagnosed with this each year…

I’m sorry, WHY IS MY BROTHER ONE OF THE 200??

This is a rare and inoperable brain tumor and the life expectancy is 5 percent meaning the other 95 percent usually will not make it. Little to no progress has been made on this kind of cancer or any kind of childhood cancer really, in the past 40 years.

Not knowing how long we had with Devon, all of our lives were paused, in the beginning anyway. We planned a trip to Disney World (Devon’s favorite place). We went on many trips actually.

Devon was put on steroids, which made him get bigger because he had such a big appetite and made him a little angrier. He would joke at some points and tell us to look how big his muscles were getting from being on the “roids”. He eventually got uncomfortable with how he looked, so uncomfortable that he didn’t want his friends to see him. A month or two went by and the next step for Devon was radiation. And it helped and shrunk his tumor 10 percent at first…and then it didn’t help at all.

Next step, was NYC, in March of 2012. That’s right, the Big Apple. My mom found a clinical trial that a doctor was doing at Sloan Kettering Memorial Hospital where an amazing team of doctors were working on treatments for kids with brain tumors. So, guess where we went every week on Wednesdays? NYC. Sometimes I was able to join, and other times I couldn’t (and got sick to my stomach every time I wasn’t with him).

While Devon was sick he got almost everything he wanted. He got a Make-a-Wish trip to Disney and got to go to Give Kids the World. He was able to have the biggest and best 15th birthday party. He spent so much time with his family, who he loved with every fiber of his being. He was able to eat whatever food he wanted…until he couldn’t.

Towards the end of the summer in 2012, Devon began to lose vital physical parts of life, this is where everything for us went downhill. He couldn’t eat, he couldn’t walk, he couldn’t talk, he could barely breathe. But this boy, he was so determined to live that he made my mom get him multiple things that would help him get better. We were trying to figure out how to communicate with him because his mind was still all there. He was literally trapped in his own body. We were able to figure out that he could communicate with his eyes…I bet you’re wondering how he could do that?

Besides the fact that Devon was a secret genius, we got an alphabet chart and started pointing to each letter. Once we got to the letter he wanted he would look up. We would write the letter down and continue until the word or sentence made sense. Eventually we knew what he was saying. We would tell him “I Love You” the way you do in sign language, and he would look up if he wanted to say it back, you knew he was mad at you if he didn’t look up. We would also joke with him and ask him if we were pretty, he would look up (say ‘yes’) for my mom and David but wouldn’t budge for me and my sister. We cracked up though, we knew he was still attempting to keep his personality, which included pushing our buttons of course it all took a while and we had to have some patience but imagine what Devon had to go through. He had to use his eyes to communicate with us…until he couldn’t.

Towards the end of November Devon had trouble breathing, a lot of trouble. He was rushed to the Albany Med. He stayed impatient in the PICU (Pediatric ICU). They told us he had to stay there, and he did, for a long time. My siblings and I were there as much as we could be. David and I were in college and Alexa was still in high school at the time. We still managed to figure out time to go there because little did we know that these would be our last moments with him.

Unfortunately, my siblings and I couldn’t be with Devon every day. I pushed so many friends away because I wanted to spend time with my brother. I didn’t mean to, and I hated that I did, but I didn’t know how much longer Devon would be here. Every time my mom would call me, I got a pit in my stomach thinking this is it, I’m not ready, he can’t leave me. When I wasn’t with him, I was worrying about him, thinking about him, wishing I had just a little more time with him.

Devon was an amazing, special, and kind-hearted boy. Even when he was sick he thought of others. In his last few weeks, even though he couldn’t talk, he used his alphabet chart and eyes to tell us that he wanted to go to St Jude’s. He wanted to get better and that he wanted to get his cousins presents for Christmas. Then he lost his hearing. Then there would be days where he wouldn’t even open those big, beautiful blue eyes.

One day he opened his eyes. I knew it was my opportunity to tell him I loved him; at that point I didn’t know when he’d open them again. He looked up (meaning he loves me too) and then closed his eyes, for the very last time.

Our beautiful Angel gained his wings on a Wednesday December 19th, 2012 at 12:07 am. We were surrounded by so many people who loved him. It didn’t ease the pain.

What were we supposed to do now? His breathing had stopped, his body was at rest, and his amazing, wonderful, courageous heart had stopped beating.

No… NO NO NO!

This can’t be happening, please someone wake me up. This isn’t real, right?… Unfortunately, it was.

Holidays aren’t the same, birthdays aren’t the same, every day…isn’t the same. Part of me is missing and he is never coming back.

I go gold because of this courageous soul. I go gold because the children can’t fight by themselves, they need support!

I miss him every day. I miss his smile, his quick wit, his humor, his beautiful blue eyes. I miss having one more person to call when I have great news, I miss having three siblings to do things with and to travel with. I’ll miss him forever.

Devon taught me what it means to be strong, physically and mentally. He taught me that I can literally do anything I set my mind to. He taught me to believe. Believe in the power of believing. He taught me how to love and how to care. He is my inspiration for EVERYTHING I do. He was such a powerful soul and I can’t believe that he is really gone. This December will be 5 years that we lost him and I still remember that torturous day like it was yesterday.

I have to remember is that Devon was unlike anyone I have ever met. He was a force to be reckoned with; he was genuine and caring. He knew when to give you a run for your money.

He was the light of our lives. A son, a brother, a nephew, a cousin, a friend, a hero, and a fighter. We all love and miss you, Devon. Thank you for inspiring community and for inspiring your family.

September is Childhood Cancer Awareness month. Please make yourself aware of what childhood cancer is and what you can do to help children and families in this situation. Unfortunately, you never know if it could happen to you or your family. I know first-hand that we couldn’t have gotten through this journey without the support of family, friends, and many community fundraisers and donations. Donate or at least volunteer. I promise you won’t regret it.

Rest in peace my handsome angel,

We love you Devon Arthur.

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