Long Way From Home

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, or recovering from, 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: January 10th, 2026

GATA2 Deficiency

• Understanding GATA2 Deficiency
  • https://www.niaid.nih.gov/sites/default/files/GATA2-Factsheet.pdf
    • A quick, helpful summary of what GATA2 deficiency is and how it can affect the body. Probably the best place to start.
  • https://pubmed.ncbi.nlm.nih.gov/36900380/
    • Originally shared with me by my geneticist, this article is the source of the highlighted notes I reference in this post.
  • https://ashpublications.org/blood/article/141/13/1524/493407/The-spectrum-of-GATA2-deficiency-syndrome
    • Another detailed article about GATA2 deficiency. I found the section near the end on the role of preemptive transplants in GATA2 patients especially helpful, since that’s where I am in my own journey.
  • https://pmc.ncbi.nlm.nih.gov/articles/PMC4342850/
    • A bit dense, like most scientific articles, but more general than many others here. It covers the basics: causes, symptoms, and an overview of GATA2 deficiency.
  • https://pubmed.ncbi.nlm.nih.gov/38993648/
    • This article explores the “stages” of GATA2 deficiency and what certain clinical markers might mean for your treatment plan. It’s a scientific piece focused on when to intervene and when close monitoring might be more appropriate.
  • https://pmc.ncbi.nlm.nih.gov/articles/PMC8549740/
    • Offers a few strong points on the importance of early identification and, ideally, completing a transplant before any irreversible damage occurs.
• Glossary of Common Terms
  • https://www.cancer.org/cancer/types/myelodysplastic-syndrome/about/what-is-mds.html
    • Myelodysplastic Syndrome (MDS) is a type of blood cancer that can be associated with progressing GATA2 deficiency. Some patients with GATA2 deficiency eventually develop MDS, which in some cases may progress to AML (acute myeloid leukemia).
  • https://www.cancer.org/cancer/types/acute-myeloid-leukemia/about/what-is-aml.html
    • A quick overview of Acute Myeloid Leukemia (AML). If you have GATA2 deficiency, it’s good to be aware of the symptoms and warning signs, just in case.
  • https://my.clevelandclinic.org/health/diseases/24864-cytopenia
    • Cytopenia is a term used to describe low counts in one or more blood cell types. White cells (leukopenia), red cells (anemia), or platelets (thrombocytopenia). Routine bloodwork in GATA2 patients often reveals one or more of these.
  • https://my.clevelandclinic.org/health/body/23067-somatic–germline-mutations
    • GATA2 deficiency can be inherited (germline) or acquired (somatic). My mutation is germline, meaning it occurred at conception, even though neither of my parents carry a faulty GATA2 gene. It’s one of those random genetic changes that can happen regardless of the gene pool of your family.
  • https://my.clevelandclinic.org/health/diseases/22831-vitamin-b12-deficiency
    • Vitamin B12 deficiency is sometimes associated with GATA2 deficiency. It’s good to know the symptoms just in case. Before my official diagnosis, my B12 levels were low, and I received shots and supplements to raise them.

Understanding Genetic Testing & Disorders

• https://www.cdc.gov/genomics-and-health/counseling-testing/genetic-testing.html
  • A straightforward overview of genetic testing. What it is, why it’s important, and how you can go about getting tested yourself.
• https://www.mayoclinic.org/tests-procedures/genetic-testing/about/pac-20384827
  • Similar to the article above, this one provides more detailed information about what genetic testing involves.
• https://www.genome.gov/For-Patients-and-Families/Genetic-Disorders
  • Explains what a “genetic disorder” is and provides a list of common and uncommon examples.
• https://www.cancer.org/cancer/risk-prevention/genetics/genetic-testing-for-cancer-risk/should-i-get-genetic-testing-for-cancer-risk.html
  • A great article outlining the benefits of genetic testing and what your results might reveal.

Pre-Transplant Testing & Terminology

• General
  • https://my.clevelandclinic.org/health/diagnostics/24508-blood-tests
    • Explains the purpose behind blood tests. Good to know as you’ll likely be getting blood drawn very often.
  • https://www.researchgate.net/figure/Chart-of-haematopoiesis-15-Platelets-erythrocytes-polymorphonuclear-neutrophils_fig1_309730379
    • A helpful graphic that shows how healthy blood cells develop over time. Your marrow doesn’t produce 100% healthy cells immediately, there’s a process, and this illustration explains it well.
  • https://www.mayoclinic.org/tests-procedures/ana-test/about/pac-20385204
    • An ANA test checks for autoimmune conditions and is often part of the workup before completing an initial bone marrow biopsy. Before mine, I had this test to see if an autoimmune issue was causing my low blood counts.
• Heart
  • https://www.mayoclinic.org/tests-procedures/ekg/about/pac-20384983
    • Explains what an EKG involves. It’s a straightforward test, but it’s helpful to understand what information it collects.
  • https://www.mayoclinic.org/tests-procedures/echocardiogram/about/pac-20393856
    • An echocardiogram is essentially an ultrasound of the heart. This link provides more detailed information if you want to learn more about the data it captures.
• Lungs
  • https://my.clevelandclinic.org/health/diagnostics/17966-pulmonary-function-testing
    • Explains why pulmonary function tests (PFTs) are important. While the article doesn’t mention how frustrating they can be, you can read more about that in this post.
• Biopsies
  • https://www.mayoclinic.org/tests-procedures/bone-marrow-biopsy/about/pac-20393117
    • A straightforward article summarizing the purpose of bone marrow biopsies. While the procedure can be uncomfortable, it provides critical information that your care team likely needs for effective treatment.
  • https://www.cancer.gov/publications/dictionaries/cancer-terms/def/punch-biopsy
    • An additional genetic test that I underwent to confirm my initial results.
• Fertility
  • https://www.mayoclinic.org/healthy-lifestyle/getting-pregnant/in-depth/fertility-preservation/art-20047512
    • A summary article that explains what fertility preservation might look like for both female and male patients.
  • https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/sperm-banking
    • Explains the process of sperm banking for male patients and why it’s important to consider before receiving treatment.
  • https://www.mayoclinic.org/tests-procedures/in-vitro-fertilization/about/pac-20384716
    • Defines IVF and explains how the process works.
  • https://www.cyprusamericanivf.com/does-ivf-prevent-genetic-diseases/
    • Explains how IVF can help prevent certain harmful genetic mutations from being passed on to offspring. A very relevant read.

Pre-Transplant Planning & Logistics

• Paid Leave & Disability
  • https://www.dol.gov/agencies/whd/fmla/faq
    • Explains what FMLA is, who qualifies, and how to begin the application process. A one-stop resource for understanding everything about FMLA.
  • https://bipartisanpolicy.org/explainer/state-paid-family-leave-laws-across-the-u-s/
    • Lists states with either mandatory or voluntary paid leave programs.
  • https://bmtinfonet.org/transplant-article/employment-disability-benefits-managing-debt-and-financial-help
    • A summary article to start with if you want a general overview of your potential leave and disability options.
• Caregivers
  • https://www.dana-farber.org/cancer-care/treatment/stem-cell-transplantation/resources/caregivers
    • A Dana-Farber resource that thoroughly covers the caregiver role, detailing what may be required before, during, and after treatment.
  • https://www.nmdp.org/patients/caregiver-resources
    • The National Marrow Donor Program (NMDP) offers many resources for patients and caregivers. This page focuses specifically on the options available to caregivers.
  • https://www.fredhutch.org/en/patient-care/for-caregivers/transplant-caregiver.html
    • Similar to the Dana-Farber link above, this is a concise summary of the caregiver role.
  • https://www.dol.gov/agencies/whd/fmla/family-caregiver
    • Caregiving is a demanding role, and because of that, there are FMLA options available. This article provides a helpful summary of who qualifies and how to apply.
• Housing
  • https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge.html
    • A link to the Hope Lodge landing page, which lists their active locations across the U.S. and Puerto Rico. With many sites available, Hope Lodge is often a convenient housing option near most major treatment centers.
  • https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge/boston.html
    • Specific to Dana-Farber and Boston, this link leads to the AstraZeneca Hope Lodge landing page. A free housing option for cancer patients and their caregivers in the city.
  • https://www.dana-farber.org/patient-family/planning-your-visit/lodging
    • Also specific to Dana-Farber, this page lists alternative housing options in Boston since there’s often a waitlist for Hope Lodge. Most treatment centers have similar options or partnerships with local lodging, so it’s definitely worth asking about, regardless of where you will be receiving treatment.
• Financial/Insurance
  • https://www.dana-farber.org/patient-family/becoming-our-patient/insurance-financial-information
    • A general insurance information page specific to care at Dana-Farber. If you’re considering treatment there, be sure to check this site and confirm with your insurance provider whether you’re in-network.
  • https://www.nmdp.org/patients/transplant-support/financial-support
    • Another NMDP article detailing financial support options if your insurance doesn’t cover all transplant-related expenses. A very helpful resource to understand what your options may be.
  • https://bmtinfonet.org/transplant-article/insurance-and-financial-issues
    • This article goes into more detail about specific insurance and financial challenges you might face, along with tips on how to handle them. Hopefully, you won’t need it, but it’s useful if any of these situations end up applying to you.

Post-Transplant Recovery & Life After Transplant

• Author’s Note
  • Before sending you elsewhere, I want to point you toward my “Field Notes” series. These posts chronicle the details of my transplant experience and the recovery that followed. If you are looking for a specific, lived example, start there. If you are looking for a broader understanding of what to expect, the resources below are a good place to begin.

• Early Recovery & Day to Day Reality
  • https://int.livhospital.com/stem-cell-transplant-recovery/
    • If you only read one of these, I’d recommend this one from LIV Hospital in Istanbul. It is the most organized and thorough link in this section, providing a rough timeline of what to expect during treatment and throughout the first year of recovery.
  • https://bmtinfonet.org/transplant-article/transplant-and-early-recovery-period
    • BMT Info offers a wide range of resources on stem and bone marrow transplants. This link takes you to their “Early Recovery” page, where you can explore specific topics related to navigating the first days of transplant and recovery.
  • https://roswellpark.multimedia-newsroom.com/index.php/2025/11/10/exercise-boosts-recovery-for-stem-cell-transplant-patients/
    • This article from Roswell Park Cancer Center highlights the benefits of exercise post-transplant. Exercise has been a cornerstone of my recovery, and I credit it with helping me return to a level of “normal” much quicker than I may have had I not put as much focus on exercise as I do.
  • https://www.mdanderson.org/cancerwise/a-stem-cell-transplant-patients-tips-for-recovery.h00-158911701.html
    • This short article from MD Anderson Cancer Center shares one patient’s tips for recovering from a stem cell transplant.
• Immune Rebuilding & Infection Awareness
  • https://www.anthonynolan.org/patients-and-families/recovering-a-stem-cell-transplant/infections-after-a-stem-cell-transplant
    • This article from Anthony Nolan focuses on infections after transplant, covering specific types and how to prevent them.
  • https://www.moffitt.org/endeavor/archive/rebuilding-your-immune-system-after-a-bone-marrow-transplant/
    • This article from Moffitt Cancer Center emphasizes the importance of getting revaccinated after a transplant.
  • https://bmtinfonet.org/transplant-article/preventing-infection
    • This article from BMT Info offers practical, “common sense” advice on how to reduce your risk of getting sick after a transplant.
• GVHD & Other Side Effects
  • https://bloodcancerunited.org/blood-cancer-care/adults/types-blood-cancer-treatment/stem-cell-transplantation/allogeneic/graft-versus-host-disease-gvhd
    • This detailed article from Blood Cancer United covers everything you need to know about GVHD. What it is, how to monitor for it, and what to do if it occurs.
  • https://healthtree.org/blood-cancer/community/articles/gvhd-after-stem-cell-transplant
    • This article from the HealthTree Foundation is a slightly less detailed overview than the one above, providing a more accessible introduction to the topic.
  • https://www.anthonynolan.org/patients-and-families/recovering-a-stem-cell-transplant/long-term-effects-a-stem-cell-transplant
    • GVHD isn’t the only concern after a transplant. This treatment is intense, so it’s helpful to understand the other potential longer-term risks as well. This article from Anthony Nolan covers many of them.
  • https://bmtinfonet.org/video/secondary-cancers-after-transplant-1
    • This video and transcript from a BMT Info presentation covers secondary cancer risks after a transplant. It’s useful to be aware of these, even if it’s not much fun to hear.
• Mental & Emotional Recovery
  • https://www.anthonynolan.org/patients-and-families/recovering-a-stem-cell-transplant/your-mental-health-after-a-stem-cell
    • This article is a one-stop resource for managing your mental health after a transplant, offering practical tips and a variety of additional resources.
  • https://bmtinfonet.org/transplant-article/emotional-challenges
    • Similar to the article above, this piece from BMT Info offers tips and strategies for managing mental health and maintaining perspective after a transplant.
  • https://healthtree.org/myeloma/community/articles/the-emotional-aspects-of-a-stem-cell-transplant
    • This article from the HealthTree Foundation focuses on the emotional side of going through transplant. While much of the preparation involves necessary discussions about the physical aspects, it’s equally important to address the emotional issues as well.
• Returning to Work & Exercise
  • https://www.anthonynolan.org/patients-and-families/recovering-a-stem-cell-transplant/returning-work-after-a-stem-cell-transplant
    • This UK-specific resource provides a helpful overview of what the return-to-work process can look like for transplant patients. Still applicable to US and non-US residents in a lot of ways.
  • https://www.anthonynolan.org/patients-and-families/recovering-a-stem-cell-transplant/managing-fatigue-after-a-stem-cell
    • Another excellent article from Anthony Nolan. Fatigue is one of the few aspects of stem cell transplants that nearly all patients experience. This piece explores how to manage it and what to watch for.
  • https://pmc.ncbi.nlm.nih.gov/articles/PMC6287392/
    • This scientific article from the NIH highlights the benefits of exercise after a transplant. In short: find what works for you and stick with it. Any movement is better than none.

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

• Nutrition
  • https://www.webmd.com/diet/ss/slideshow-80-20-weekend-diet
    • A quick summary of the 80/20 rule when it comes to what you consume. I try to follow this ideology most of the time.
  • https://www.mskcc.org/cancer-care/patient-education/eating-well-after-your-stem-cell-transplant
    • A great nutrition overview from Memorial Sloan Kettering (MSK). This article covers everything from what to eat, what not to eat, how to prep food safely, how to store food, etc. Basically everything related to food post-transplant. You will have restrictions, so reviewing this link and any other additional information provided by your care team is crucial.
  • https://www.cancer.org/cancer/survivorship/be-healthy-after-treatment/eating-well-after-treatment-ends.html
    • A more general guide to nutrition post cancer treatment. Please note, stem cell transplant nutrition guidelines can and likely differ from what is on here.
• Exercise
  • https://www.anthonynolan.org/blog/2020/02/a-physiotherapists-guide-to-exercise-before-during-and-after-a-stem-cell-transplant
    • A great exercise overview from Anthony Nolan covering pre- and post-transplant care. It mainly helped me understand what to expect after treatment.
  • https://pmc.ncbi.nlm.nih.gov/articles/PMC6532661/
    • A detailed look at the benefits of exercise after allogeneic stem cell transplants. More in-depth than many general guidelines you’ll find online.
  • https://www.nature.com/articles/s41598-023-49420-7
    • A detailed look at the benefits of being physically fit before undergoing an allogeneic stem cell transplant. A very interesting read.
  • https://www.onepeloton.com/blog/benefits-of-running
    • A shameless running plug in the form of an article from Peloton. As I mentioned in this post, running has been one of the most rewarding habits that I have formed. If you’re thinking about starting but need a little extra motivation, this article offers a great list of benefits.
• General Wellness
  • https://www.healthpartners.com/blog/preventive-care-101-what-why-and-how-much/
    • A quick summary of preventative care. I hope it’s clear through this blog that I’m a big advocate for taking proactive steps to care of yourself. This article lists appointments you can make that are focused around preventative care, but I believe some of the best practices you can adopt happen outside the doctor’s office.
  • https://www.cancerresearchuk.org/about-cancer/treatment/bone-marrow-stem-cell-transplants/after
    • This article covers many of the best practices for recovering from a stem cell transplant. It includes nearly everything you might want to do or consider on your road to recovery.
  • https://health.clevelandclinic.org/what-is-vo2-max-and-how-to-calculate-it
    • VO2 max is a strong indicator of overall health. This article explains the measurements involved and how to perform a VO2 max test. Some fitness wearables also track this data, so it’s worth checking if your device includes it.

Support & Advocacy Organizations

• https://www.nmdp.org/what-we-do
  • The National Marrow Donor Program offers valuable support for patients and families throughout the transplant process. If you want to learn more about their work, I highly recommend checking out this link.
• https://www.nmdp.org/patients/transplant-support/patient-support-center/emotional-support
  • A direct link to the NMDP support services page. It’s a great resource if you’re going through this process and want to explore options for talking to someone about your experience.
• https://www.dana-farber.org/patient-family/support-services
  • A Dana-Farber-specific resource page with lots of helpful information. I plan to explore it further as a patient there.
• https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge.html
  • The Hope Lodge program offers free housing and care for patients and caregivers during active cancer treatment. I plan to stay at their Boston location after my transplant and am very grateful places like this exist. If you want to learn more about their mission, check them out.
• https://www.jimmyfund.org
  • The Jimmy Fund supports cancer research, care, and treatment at Dana-Farber. My experience there so far has been fantastic, and I know at least some part of that is because of the support that Dana-Farber receives from organizations like The Jimmy Fund.
• https://bonemarrow.org/index.php
  • The Bone Marrow & Cancer Foundation focuses more on helping patients manage the financial aspects of treatment. They connect patients with resources to make affording care more manageable.

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 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 early in this process 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 initially learning more about my treatment plan. 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 before being on the other side of my own transplant. 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 moving through 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 real 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. The opening line: “I have an engineering problem,” still makes me laugh to this day. He made the best of his situation and shared the lessons he learned with others. I am thankful that he did.
    • The Lecture: https://www.youtube.com/watch?v=ayPMfopCe1g