Long Way From Home

Field Notes From A Stem Cell Transplant

Resources

Paris, France (March 2019)

This is a collection of the resources I’ve found useful since my diagnosis, organized by category. One section is specific to my condition, but the others are more general and include articles and tools that may be helpful to anyone preparing for a stem cell transplant.

I know how hard it can be to look directly at what you’re facing, but knowledge really is power. Being an informed patient is something to take pride in, and I hope these resources help you feel more informed and supported as you navigate your own path. I know they helped me.

Disclaimer: I’m not affiliated with any of the companies, websites, or authors listed here. These are simply the resources I’ve found helpful and wanted to share.

Last Updated: October 15th, 2025

GATA2 Deficiency
Understanding Genetic Testing & Disorders
Pre-Transplant Testing & Terminology
Pre-Transplant Planning & Logistics
Stem Cell & Bone Marrow Transplant Data
  • https://cibmtr.org/CIBMTR/Resources/Summary-Slides-Reports
    • Data from transplant centers providing insights into success rates and outcomes over recent years. Nerve-wracking to look at? Definitely. Necessary? I’d say yes.
  • https://bloodstemcell.hrsa.gov/data
    • If you’re someone who appreciates concrete data, this link is for you. From the Health Resources and Services Administration (HRSA), this landing page offers links to detailed transplant statistics like survival rates, donor info, and the number of transplants performed. It’s similar to the CIBMTR summary slides but different enough to be worthy of inclusion.
Nutrition, Exercise, & General Wellness
Support & Advocacy Organizations
Books & Related Media
  • https://peterattiamd.com/outlive/
    • Outlive is the book that started my entire journey. If I hadn’t picked it up and followed its advice, I might never have done the bloodwork that led to discovering my genetic mutation before any serious damage could occur. I will be forever grateful for this book. The author explores topics related to longevity and offers guidance on living a healthy lifestyle designed not just to extend life, but to maintain the quality of it for as many years as possible.
  • https://peterattiamd.com/
    • Dr. Peter Attia is the author of Outlive. He’s very active on social media and hosts a podcast that I highly recommend checking out if you’ve read the book and want to dive deeper into the ideas and topics he covers.
  • https://michaelpollan.com/books/in-defense-of-food/
    • In Defense of Food is part eating manifesto and part exploration of how our eating habits and practices got to where they are currently. I’ve based much of my current approach to eating on what I learned from this book. In short: Eat real food.
  • https://michaelpollan.com/
    • Michael Pollan is the author of In Defense of Food and many other books, including The Botany of Desire and The Omnivore’s Dilemma. He also played a key role in creating the Food, Inc. documentaries. Overall, he’s just a very interesting person, and if you want to deepen or repair your relationship with the natural world through food, I highly recommend exploring more of his work.
  • https://www.simonandschuster.com/books/The-Song-of-the-Cell/Siddhartha-Mukherjee/9781982117368
    • The Song of the Cell by Siddhartha Mukherjee is a book I read earlier this year that does a fantastic job of summarizing our long and complex history of trying to understand cells. Toward the end, there’s a section specifically about the history and evolution of stem cell transplants, which was both helpful and a bit daunting to read as I was attempting to learn more about my treatment plan earlier this year. Even without that section, this book is definitely worth reading if you want to explore just how intricate and fascinating the human body and modern medicine truly are.
  • https://www.suleikajaouad.com/between-two-kingdoms
    • Between Two Kingdoms by Suleika Jaouad was recommended to me by a social worker at Dana-Farber. Full disclosure: I haven’t read it yet. Knowing a bit of her story, I’m hesitant to dive in less than two weeks before my admission date. I plan to update this section once I do, but I’m including it now because I genuinely believe it will be one of the most impactful books that I end up reading. In short, Suleika was diagnosed with leukemia just after finishing college and the book chronicles her years of treatment, including a stem cell transplant, and how she chose to heal both mentally and physically.
  • https://www.suleikajaouad.com
    • This is a link to Suleika Jaouad’s website if you’d like to learn more about her and her work. She’s inspiring on many levels, and as someone preparing for my own treatment journey, I find it comforting to know that there are people who not only make it through something like this, but also go on to make the best of it afterward. She’s a role model in that way.
  • https://www.barnesandnoble.com/w/the-last-lecture-randy-pausch/1100317728
    • The Last Lecture by Randy Pausch is a fantastic book about perspective. After being diagnosed with terminal pancreatic cancer, Pausch, a Carnegie Mellon professor, gave a lecture that became the basis for this memoir. It’s filled with reflections on his life, insights into his family and values, and the legacy he hoped to leave for his children. Despite the heavy subject, the tone remains upbeat. It’s a moving reminder that our time is limited, so we should make the most of it. The opening line: “I have an engineering problem,” still makes me laugh to this day. Faced with the kind of adversity no one should have to endure, he made the best of it and shared the lessons he learned with others. I am thankful that he did.