Starting Your Treatment Journey
A Step-by-Step Guide for Warriors Exploring Transformative Therapies
Deciding whether to pursue a bone marrow transplant or gene-based therapy is a big step—and you don’t have to figure it out all at once.
This guide is designed to help you move forward one clear step at a time, with space for questions, reflection, and support along the way. You can move through these steps at your own pace. There’s no “right” timeline—only what’s right for you.
Step 1: Learn Your Treatment Options
Start with Understanding What's Possible for You
Before making any decisions, it’s important to understand which therapies you may be eligible for and how they differ.
☐ Confirm which transformative therapies you may qualify for (bone marrow transplant, gene therapy, or a clinical trial)
☐ Learn the difference between:
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Autologous vs. allogeneic transplant
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Gene addition vs. gene editing approaches
☐ Review the potential benefits, risks, and limitations of each option
☐ Discuss the likelihood of a "cure", partial response to treatment, or long-term complications
☐ Understand conditioning regimens (chemotherapy, radiation, or reduced-intensity options)
☐ Ask about timelines—from evaluation to hospitalization, recovery, and long-term follow-up
☐ Clarify what “success” means to you - both medically and personally
Step 2: Assess Your Medical Readiness
Assess and try to make sense of how your body is doing right now.
Your care team will evaluate your overall health to determine readiness for treatment and identify areas that may need support.
☐ Complete baseline evaluations (heart, lungs, kidneys, liver, brain)
☐ Review your sickle cell history and prior complications
☐ Discuss fertility risks and preservation options
☐ Update immunizations as recommended
☐ Review all current medications and supplements
☐ Address active infections or unresolved health concerns
☐ Talk through your pain history (chronic pain vs. VOCs) and management plans
☐ Understand graft-versus-host disease (GVHD) risk, if pursuing donor-based transplant
Step 3: Prepare Emotionally and Mentally
Your mind matters just as much as your body.
Transformative therapy can bring hope—and fear. All your feelings are valid.
☐ Acknowledge concerns, expectations, and uncertainty
☐ Screen for anxiety, depression, PTSD, or medical trauma
☐ Identify coping strategies for stress, isolation, or loss of control
☐ Prepare for identity shifts after treatment
☐ Talk openly about the emotional impact of “life after cure”
☐ Identify mental health professionals familiar with chronic illness or transplant care
Step 4: Plan for the Practical Details
Try to reduce the stress you feel by planning ahead.
Logistics can feel overwhelming—but taking them step by step helps.
☐ Confirm treatment location and expected length of stay
☐ Arrange housing if treatment is away from home
☐ Plan transportation for appointments and follow-ups
☐ Prepare for time away from work or school
☐ Understand disability benefits, FMLA, or leave options
☐ Review insurance coverage and potential out-of-pocket costs
☐ Identify financial assistance programs or grants
☐ Organize medical records and important documents
Step 5: Set Realistic Pain & Symptom Expectations
Healing is not always linear.
Understanding what may change—and what may not—can help you better prepare.
☐ Learn how your sickle cell pain may shift during and after treatment
☐ Discuss acute pain management during hospitalization
☐ Plan for chronic pain monitoring after treatment
☐ Identify personal pain triggers and early warning signs
☐ Clarify how vaso-occlusive crises (VOCs )are defined post-treatment
☐ Set expectations for fatigue, brain fog, sleep changes, and physical deconditioning
Step 6: Define Quality of Life Goals & Think Long-Term
Survivorship starts before treatment begins.
Determine what the term "thriving" means to you?
☐ Define personal goals for life after treatment
☐ Discuss return-to-work or school timelines
☐ Plan for gradual return to daily activities
☐ Identify progress markers beyond blood counts and test results
☐ Review the possible late effects of the conditioning regimen
☐ Discuss immune recovery timelines with your transplant provider
☐ Plan for ongoing organ function monitoring
☐ Address fertility, pregnancy, and family-planning considerations
☐ Identify who will coordinate your care after treatment ends
Final Reflection
Before moving forward, pause and check in with yourself:
☐ Do I feel informed—not pressured—about this decision?
☐ Do I feel supported medically, emotionally, and practically?
☐ Do I understand what comes next, no matter the outcome?