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In Loving Memory

Elijah grew up not knowing about SDS. Neither did his family. He developed health issues around age 23 including MDS. During the course of his treatment, he was diagnosed with SDS as the cause for his bone marrow issues. Later that year, he developed AML, and passed away from stem cell transplant and AML complications at the age of 25.

Thoughts from Elijah's mother, Erika.

Elijah left us Nov 30th. We’ve made it through one whole day without him physically here. I miss him. My heart hurts and yearns for him. To know him was a gift. That has become so very obvious as you have shared stories with us over the past few days. Thank you for those. Knowing those things is one thing, but reading and hearing new stories that confirm just how awesome we knew him to be is heart fuel for me right now. He had one of the most endearing souls.

When Elijah was born we said he was a wise old little yoda soul. It’s hard to explain but we just always knew he was different and special. I had him so very young, and although I had a full scholarship to pursue music, I knew in my heart I had to quit college to raise this tiny human, he was just too amazing to miss a thing. I am so glad I had the incredible honor to be his mom. He had a little Elmo voice and was the tiniest baby and kid in his class. But packed in that pint sized package was the biggest heart, filled with so much kindness, thoughtfulness, and courage.

Every teacher, coach or leader who ever taught him adored him, he was just that sweet. As Elijah grew, he held onto that gentle spirit. As other teens grew sassy he remained young at heart in so many ways. He was an encourager and was passionate about what he cared about. He loved fiercely from the start. While meek and humble in many ways, he was outgoing and full of humor and bravery when it mattered. He had many shirts that read ‘beast mode’. He was a whole lot of awesome packed into that seemingly quiet soul. He made people laugh and put them at ease or made them feel welcome…and always loved. He became a leader in whatever he was involved in, scouts and band were two of his youthful passions. But we were reminded of his ability to lead even in simple things like leading the the team of cousins on their beach scavenger hunt one summer vacation. People turned to him for guidance, comfort and strength. What a legacy.

And speaking of legacy, I am so grateful he knew love and not just with our immediate family but was able to find love and grow a family of his own. To be married and love wholeheartedly to his wife and have two insanely gorgeous children so young was a lot of hard work, but now we know he just had a lot of life to squeeze in… and that he did. & did it all out. He loved intensely and fiercely. His arrow pointed straight and true no matter what he was doing. Even in messiness, clumsiness, and mistakes, he owned what of those he needed to and picked himself up and did better every step forward in this life. What a legacy.

We do not mourn losing him because we know right where he is, but make no mistake we still mourn plenty. Thus far, God has given us what we needed when we needed it every step of the way. Impressive considering we had so much to tackle and coming at us for a year and a half… multi generational family dynamics, the overwhelming diagnosis journey and many healthcare decisions, the heartache and roller coaster of treatment and living out of state since May, navigating 3 separate lives and schedules so Elijah was never alone in Cincinnati. We are tired, we yearn for peace and rest but we still have work to do. We are planning an epic celebration of life for Elijah, because he was beyond epic. There is a go fund me being put in place because the best legacy we can put immediately into place for him now is financial security for his family.

There is so much to say and not enough paper or words or time. For now know we feel the love. We need the kind lifting words and support. We crave more time, hugs and conversations with Elijah but we will take stories of him and hugs with all of you for now. Thank you for loving us so well.

I think it’s no coincidence Elijah shared this exactly a year ago (November 28th, 2021) to the day we learned his hours and days were fading away. And then he swiftly went home to Jesus on Wednesday at Sunrise. He so desperately searched for his purpose for years, little did he know he’d been fulfilling it the whole time. He recently embraced his purpose was to inspire people during his journey this past year, if you knew him, you know he always has and always will. Case in point… the lyrics are incredibly profound today. …‘I won’t go to my grave, until a difference is made’.

Here are the lyrics in their entirety. I think they speak for themselves.


Full of despair inside a darkness

Self conscious and scared, held prisoner of war

Running out of air, buried in a sadness

Want a way out of this paralyzing world

And the sound of the cries when a family's loved one dies

It echoes through a vacant room where a young soul still resides

When the night is cold and you feel like no-one knows

what it's like to be the only one buried in this hole

You can make it to the sunrise.

(Woah. Woah. Woah)

You can make it to the sunrise.

(Woah. Woah. Woah.)

Searching for a way to escape the madness

A dire need for change as we fight for better days

The hurt and the pain cut deep like a razor blade

Holding in a cry for love, abandoned and afraid

When the night is cold and you feel like no-one knows

what it's like to be the only one buried in this hole

You can make it to the sunrise

(Woah. Woah. Woah)

You can make it to the sunrise

(Woah. Woah. Woah.)

I won't go to my grave until a difference is made

I won't go to my grave until a difference is made

(Until a difference is made)

When the night is cold and you feel like no-one knows

what it's like to be the only one buried in this hole

You can make it to the sunrise

(Woah. Woah. Woah)

You can make it to the sunrise

(Woah. Woah. Woah.)

I won't go to my grave until a difference is made

(Until a difference is made)

Until a difference is made

(From time to time, there arise among human beings,

people, who seem to exude love, as naturally as the sun gives out heat.)”

Thoughts from Elijah's father, Brian.

As I write this on the morning of November 29 2022, Elijah is still with us and is still fighting. Please share this with anyone or in any way that seems appropriate.

To be fully transparent, Elijah is more than likely in his last moments or days of life on this earth.

I have a very specific reason for writing this message today. As many of you know, I was privileged enough to spend a lot of time in Cincinnati with Elijah while he was in between hospital stays. We had a few amazing weeks while he grew stronger after his bone marrow transplant. We spent our time hanging out in the apartment in Bellevue Ky. We went into the hospital about every day for check ups and lab work. We tried to go on little adventures when we could, watch old movies, talk about life. I now find it very ironic that we spent this time in a little town that we would have never known otherwise. Bellevue. A name that means beautiful view. How appropriate since Elijah has shown us all a beautiful view of life. All of us.

One thing that Elijah made me promise to do was to gather the family and play this song for them. He said I would know the right time. I gathered our family last night. I gather all of you now. Elijah listened to this song over and over in Bellevue. This song rips my heart out but I know that it isn’t a song about death. It is a song about the next adventure. I am only able to have the strength to write this today because Elijah has a promise of one more adventure. A promise that so many of you have helped show and teach him about when he was young. Jesus is calling Elijah to another adventure. I think it is appropriate to share this with you while he is still here. He has asked a great task of me and I take it as the highest honor to share it with you now. If you are able, listen to this song. While I suspect you will offer prayers and comfort, do what Elijah would want……(always the little Boy Scout)… be prepared for your journey, at whatever time you are called to it.

To all strangers, friends, family. It is my honor to be the one asked to share this. From Elijah: “I bid you all, a very fond farewell”

I wrote a very long post last night that I think many people would find depressing. Myself, Erika Larsen Thompson and Jordan were in Elijah Thompson’s room laughing, telling stories and playing favorite songs. The post I wrote last night was about how I had to leave the room and listen to what has been my favorite song for the last year. Everybody hurts by REM. I had written about the roller coaster and what this song has meant to me. I went deep and shared more than I have shared with anyone. I decided I was not going to, or ready to share that so I deleted it.

As I sat in the hospital room this morning, I had the what I think might be the most amazing thing happen that only those in this circumstance may understand.

I love watching sunrises. To me, rain or shine, cloudy or clear sky, they are a beautiful promise of an uncertain day ahead. I have see amazing ones. I have been on a small journey to photograph a beautiful one. This morning, I sat at the foot of Elijah’s bed. I don’t write to share what was said. That belongs to Elijah and I alone. I write to say that as we talked. As I cried. As I looked over a hospital bed, monitors, more monitors. Looked across a city that is far from home. I looked across a foreground that no one ever wants to be in. But the background. The thing that lies out there waiting. The promise of things to come. That is what I write about this morning. As we talked, as if planned by God alone, I looked over all of this mess and I saw the most beautiful sunrise. Right on que. I almost grabbed my camera but then I thought, no, this one is mine. No one else gets to see this one. What you get from me today is a poor attempt at telling you this: Everybody hurts sometimes. Everybody cries. Hold on. Hold on to the things that you have faith in. Hold on to the ones you love. Ugly cry over the smallest of things. And then, sometimes, you get to see what I saw this morning in the childrens hospital in Cincinnati. You see the promise of better thing to come. You see God send a gentle little reminder that says yes, hold on. Hold on to this life while it is your gift but don’t lose sight of the promise of a new day. A beautiful future. A better gift.

Elijah, I so humbled and proud to be your father

October 31st

The dictionary can tell you what “roller coaster” means as a verb. Simply put, it is: move, change, or occur in a dramatically changeable manner. That is definition but how do you tell someone what it feels like…what it really is??

Any random day in the life of this crew could involve mom walking into a hospital and getting intercepted by one of the staff, some of whom become like family, to explain why 12 doctors are running in and out of the room like crazy. Dad going full send the last hour or so of an 8hr drive to hurry up and walk down that same hall and see someone outside the room talking to Erika and just wondering what each step is bringing me closer to. That same day brings the conversations about whether or not family needs to come up and the look from doctors that tells you to make it happen. Emergency plane tickets. Kassi, throwing a bag together and rushing out with two kids to the airport with no time to prepare. Jordan, agreeing to fly with Kassi before Erika can even finish asking him. That is one part of the ride.

Calling family members when you know you need to tell them something but you don’t know what to say. Hanging up on them and pretending to have simply lost signal just so you can yell and beat the hell out of something. (Sorry Laura Haas). More turns in the ride.

Having the absolute proudest moments as parents when you see a brother's love in action. To see Jordan take such good care of the kids and be with Elijah brings unbelievable joy to me. More ups.

Talks of power of attorney, DNRs, breathing tubes, all that goes along with that. Another twist on the ride no one wanted on in the first place.

Getting to spend an awesome afternoon in the park so Elijah and Kassi can have their time together. Abi refusing to use the park bathroom and Erika lugging her back to the apartment. Pushing swings until your arms are like spaghetti. Having a great day that, in a weird way, would not have happened without the twist in this ride bringing us here. Another corkscrew.

As I write this, I think about a literal roller coaster. You can imagine being placed on one maybe three or four cars back. You have someone beside you. A handful in front of you and more behind. You are insulted. You have a moment to see how those in front of you act and respond to the twist and turns. You kinda have the subconscious feeling that, the ones in front are ok and you will be too. Now imagine walking through the amusement park just to play some skee-ball and eat some cotton candy. Now you find yourself in the front seat of a coaster that has no defined path. A coaster that there is no one that has ridden this same one. No one ahead of you that you see taking the same twist before you do and coming out ok. You are in the front. You can’t see what is coming. You don’t see those behind you. In my head, that is what I imagine Elijah is going through. However, I feel like I get to see it from within and without (if you know, you know). I’m on the platform, I don’t see Elijah up front, alone on an empty coaster. I see him at the front of a line of cars that has anyone reading this, strapped in and buckled up. I see cars full of medical experts. I see a car full of hope, possibilities, dreams and prayers. I see a cars that are full of people who are there because God has placed each and every one of them there for Elijah and quite possibly for this very twist on the coaster. I see a car that has Elijah in the front and his family piled in right there behind him. We are right here with you T. We will hold you up and watch you through this the best we can. We’ve got you, the best we can. Now in my head, as I see all of this, I know that there is a reason this coaster is built with room for two at the front. The reason I say we are behind you Elijah is that I can’t experience what you have. I can’t take the tests, the biopsies, the chemo, arsenic, breathing treatments. I can’t be alone in a hospital room. I can’t see things from the perspective that only the first person in the cart sees. But, if I know anything in this world, I know this: this roller coaster might have you at the front and all of us behind but it does that because we are not strong enough. We are not who gets the front seat with you. We are on this ride, scared like you, enjoy the victories like you, questioning just like you, caught of guard just like you. That spot up front. The one that looks empty to some. The one that I, as your dad, can not fill. That spot is for the One that you chose years ago to place there. That spot has Jesus right there, right beside you, being what all of us can not. It is because of that, even if we don’t know what it is, this ride has a purpose and has hope.

Another twist. The first picture you see is all of us in the ICU a couple days after our big scare. That was taken right before Jordan and I brought the kids back to NC. Elijah is up, smiling, had a great visit and is back to making improvements. Definitely not out of the woods but is making daily strides in the right direction. In a couple days I will share a story about Elijah’s resiliency.

Life is like a roller coaster. It’s never going to be perfect - it’s going to have perfect moments, and then rough spots, but it’s all worth it. ~ Patti Smith

Thoughts from Elijah's wife, Kassi.

I don’t know where to begin, so I will begin with this. I never could have imagined life turning out this way. Elijah has been the most amazing husband I could have asked for. Even through this absolute valley we faced, our relationship only grew stronger. For that I am grateful. He was an incredible Husband, Father, Son, and Friend. Never have I met someone with such a kindness. More importantly, never have i met someone with such great faith. I’m writing this not for pity or for the “I’m sorry”s. I’m writing this because Elijah said he wanted people to know just how amazing God has been to him and the rest of us throughout this. He wanted to be an inspiration to all. Three days ago he made me promise that I wouldn’t stop telling his story, and that I would share all of the wonderful things that happened.

I’m not yet ready to relive every bit of the trauma from this past year, but I will say this. God provided. Every step of the way, God provided. He opened the doors, He gave the answers, He gave the resources, and most of all, He gave the peace to all of us. Philippians 4:19 says “And my God will meet all your needs according to the riches of his glory in Jesus Christ.” Elijah’s answer to any new challenges that he was faced with was always “God got me through before, and He will this time too.” And that statement couldn’t have been more true. God always, always, always provided.

2 Corinthians 9:8 “And God is able to bless you abundantly, so that in all things at all times, having all that you need, you will abound in every good work.”

Elijah has already been an inspiration to many, and I know will continue to be an inspiration. While Elijah‘s time here on earth is done, we are so happy that we know exactly where he is now. This isn’t goodbye, it’s simply see you later.

Psalms 34:10 “The lion may grow weak and hungry, but those who seek the Lord lack no good thing.”

Our hearts are hurting, but we are also overjoyed that he is now with God. I’m sure he opened those pearly gates Jedi style.

Note from the SDS Alliance:


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