Field Note 09: Days +76 to +100
Day +100 is one of the major milestones in the transplant process, and I’m very happy to say I’ve finally reached it. This milestone comes with the loosening of some restrictions, which is great, but also with the added anxiety of more testing, tapering key medications, and everything else that comes next. I’ve made a…
Thankfulness, Gratitude, & Faith
Over time, I’ve learned that thankfulness and gratitude are emotions that require constant effort to maintain. We all have a habit of getting caught up in the day to day effort it takes to simply exist, that it’s pretty easy to forget how lucky we all are. Even when things aren’t going exactly how you…
Field Note 08: Days +51 to +75
If I had to summarize briefly how this chunk of time has been, I’d say that it has been slightly frustrating in some areas, and encouraging in others. At the end of the day, I still think this period brought more progress than setbacks though, and that’s really all I can ask for. Anyways, let’s…
The Boston Hope Lodge Experience
This post will be a brief overview of my experience as a guest at Boston’s Hope Lodge. When I was planning all the details before transplant, I knew that staying nearby afterward would probably be in my best interest, both for convenience and for safety. The Hope Lodge offers free housing for patients receiving treatment…
Field Note 07: Days +32 to +50
Just like that, I’ve reached day +50. Medically, there isn’t much significance to this milestone, but mentally it feels really good. Most of the heavier post-transplant restrictions, barring any major setbacks, should start to lift around day +100, so being halfway there already is encouraging. Anyway, it’s been about two to three weeks since my…
Field Note 06: Days +25 to +31
Welcome back! After some thought, I’ve decided this will be the last of the “weekly update” style field notes. The updates aren’t ending, but now that I’m through the initial 30 days, I want to shift to a more sustainable model. Going forward, I’ll be posting updates around key milestones like Day +50, Day +75,…
Field Note 05: Days +18 to +24
Field note #5. Alternative title: “life out of a hotel room.” Not quite as glamorous as it sounds, but we’re right down the road from the hospital and will be here until a spot opens up at the Hope Lodge. Jokes aside, it was a good week, full of early recovery milestones and encouraging news…
Field Note 04: Days +11 to +17
I’m very excited to share this one. Discharge came as a surprise, much earlier than the timeline I was given, and I ended up being wheeled out of the hospital on day +17. It was a whirlwind of a day in the best way, though the week leading up to it had its fair share…
Field Note 03: Days +4 to +10
Welcome back. I took some time to focus on just getting through the low point the last week or two. The back half of my hospital stay was about as rough as expected, so I’ll be playing catch-up with the next post or two. I am doing much better now, and I did manage to…
Field Note 02: Days –3 to +3
We’re back with a recap of my first full week here. There were plenty of things I’m proud of, and a few moments I’m less proud of, but overall I’m happy with the progress that was made this week. Let’s jump in. Disclaimer: Every stem cell transplant experience is different. This is mine. Monday, August…
Field Note 01: Days –6 to –4
Today marks the start of the “Field Notes” series. Essentially, my attempt to document what this process actually looks like from the inside. I’ll admit, I may have overestimated my ability to keep a perfectly consistent posting schedule. I had meant to post this earlier this week around day -2 or -1, but as I…
Off to See The Wizard
So, here we are, the day of my admission. As you can probably imagine, I’m feeling a wide range of emotions. To name a few: relief, fear, gratitude, and hope. All pretty valid, I’d say. Relief, because I’ve known since January that my future involves a stem cell transplant, and that day has finally come,…
Dear Boston
Welcome back. Today, I want to write a bit of an open-ended letter to the city of Boston and share the love that I have for the city with you all. As someone who has spent their whole life more or less living in New England, Boston has always been one of the more special…
Preparing for Transplant: The Logistics
If you caught last week’s post on pre-transplant testing, consider this the second installment. Today, I’ll be diving into what goes into actually planning for a stem cell transplant, more specifically, the logistics and everything that you might want to consider before admission. Since there’s a lot to cover, I’ll be breaking this post into…
Preparing for Transplant: The Testing
Today, I’ll be breaking down what the build up to transplant has looked like for me so far. While I went into detail in a previous post about the road to my diagnosis, I thought it made sense to dedicate a separate post to everything that came after. Specifically, the appointments and testing I’ve gone…
Running Away From My Problems: A Pre-Transplant Health Check
Today, I want to talk about where my health stands heading into transplant. Over the past few years, I’ve made a conscious effort to build a solid foundation when it comes to my health. A foundation I now plan to lean on heavily throughout this process. I’ve found that it’s easy to take your health…
Spoiler: It Wasn’t Just a Vitamin Deficiency
Hello again. Today’s post is all about how I arrived at my GATA2 deficiency diagnosis. The path, the tests, and everything in between. In hindsight, it was a relatively straightforward sequence of escalating tests, but it still involved many appointments, many doctors, and more blood draws than I think any one person should reasonably be…
GATA2 Deficiency: A Deeply Niche Club I Didn’t Mean to Join
Welcome back. Today’s post will likely be a bit longer and more technical than the first, as I want to take the time to explain more about the genetic disorder I was diagnosed with. If you haven’t had a chance to read the first post, I would recommend doing that now. It’s a relatively quick…
Before Things Get Complicated
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…
Long Way From Home 