Long Way From Home

Hi there. My name is Ethan. I’m 24 years old, and I currently live in Connecticut. Six months ago, in January 2025, I was diagnosed with a rare genetic condition known as GATA2 deficiency. I’ll be going into more detail about the diagnosis in the next post, but for now, the key thing to know is this: in a little more than a month, I’ll be receiving a stem cell transplant at the Dana-Farber Cancer Institute in Boston. The goal is to stop the disease from progressing and, ideally, to reset my immune system and bone marrow so they can function properly again.

This blog will be a collection of my thoughts and reflections as I move through treatment. Let me be clear: nothing I share here should be taken as medical advice. I’m not a doctor, just a patient doing my best to document what I’m learning along the way.

I’ll share what I’m told, what I experience, and what I come to understand, but every stem cell transplant (SCT) is different. These procedures are complex, and no two journeys are exactly the same. Please keep that in mind as you read along.

With that covered, let’s outline what I hope to accomplish here:

• I want to shed light on what the stem cell transplant process looks like from a patient actually going through it. Whether I like it or not, this is my situation. I could complain about it day & night or I could document my experience in the hope that it makes the journey a little less daunting for the next person in line. 
• I want this to serve as a resource for those undergoing transplant, or preparing to. I will be sharing both factual accounts of what is occurring as well as more reflective portions of my experience. Hopefully balancing the two well enough to tell the full story of my transplant.
• Creative expression. I’m about to undergo one of the more complex medical procedures modern medicine has to offer, and I’m shamelessly turning to writing, photography, and storytelling as a way to try and make sense of it. Having a creative project like this to focus on during the chaos of treatment will help me stay grounded.

On the back of that, here is what this blog will not be:

• Too depressing. I promise. 
• This will not be an embellishment of my experience in ANY way. Details will not be exaggerated nor will they be downplayed. It will be an honest recount of what is happening, how I feel about it, and how I am coping (or failing to).
• An attention grab. I am not here for pity or with the secret hope of reaching thousands of readers. I am here for you. Yes you, reading this right now, maybe trying to learn about the stem cell transplant process because you, a loved one, or someone close to you is about to walk this road. If this helps even one person feel more prepared or less alone, then I’ve done what I came here to do. 

You may be wondering why I chose the name I did for this blog. Long Way From Home comes from a Lumineers song by the same name that I’ve always loved. As sad as the story is behind the song, I have found myself relating to some of the lyrics more than I hoped I ever would. The title phrase in particular took on a much deeper meaning once I found myself dealing with my diagnosis and its repercussions.

Until now, the most serious medical procedure I’ve undergone was getting my wisdom teeth out, so let’s just say I’m not exactly coming into this with a deep clinical understanding of what I may experience. This transplant is pulling me away from the version of life and health I’ve always known, into something unfamiliar.

Long Way From Home captures that feeling very well I think. The sense of being far from everything that once felt normal to me and everything I may have taken for granted as a healthy young adult.

The tagline, ‘Field notes from a stem cell transplant,’ was chosen just as deliberately. Although, for the record, I’d rather not be ‘in the field’ at all on this one. Honestly, I feel a bit like the reluctant scientist in a Jurassic Park movie. I didn’t volunteer for this expedition, but here I am, in the tall grass with the raptors, trying to transmit dispatches back to base camp without becoming a dinosaur snack.

Okay, maybe a bit dramatic, but the metaphor holds I think. My goals being what they are, ‘Field notes from a stem cell transplant’ feels right.

In the coming weeks, I’ll be sharing more details about myself and what ultimately led me to where I currently am with my diagnosis. Posts that dive into the specifics of the condition I am dealing with, the current state of my health (spoiler: as stable as one can hope for given the situation!), why I chose Dana-Farber as my treatment center, and a handful of other hopefully useful insights. 

The first official ‘Field Note’ will be posted shortly after my admission to Dana-Farber. The plan is to report in roughly once a week with a recap of how the previous week unfolded to give you all a clear idea of my transplant experience. It will proceed with a once a week frequency for as long as it makes sense to do so. Likely, this will last for the first 90-100 days as there are a lot of key milestones during that period. After that, the updates might be less frequent, but we will see how things go.

Some updates might be long, detailed explorations of what’s happening. Others might be… less coherent. Please bear with me, there’s a good chance I’ll be writing some of these posts while actively marinating in chemo and trying to remember what day it is. Expect the occasional sentence to read like a fever dream.

With all that being said, thank you for being here. I appreciate you taking the time to read through this introductory post. I meant what I said earlier, I really do want this to mean something. This isn’t just a place for me to vent or reflect (though there’ll be some of that, too). 

My hope is that by sharing what I’m going through, someone facing a similar challenge, or their own treatment journey, might feel a little less alone, and a little more prepared for whatever lies ahead.

If you have questions, thoughts, or just want to say hello, don’t hesitate to reach out. I’d love to hear from you.

Talk Soon,

– Ethan