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Toolkit

Practical tools grown from the Garden's content: checklists, conversation guides, and question lists you can print or save and bring to your next appointment.

Questions for Your Care Team

Gathered from across the Garden, these are questions that patients and families have found helpful at different stages of your journey. Check off the ones that matter to you and bring this list to your next visit.

😷Begin Chemo and/or Radiation

What type of preparative regimen will I receive?How does it compare to what other patients receive?What are the short- and long-term side effects?What should I expect during chemotherapy or radiation?How can I prepare emotionally and physically?What support is available for my caregiver?

🦠Infections and Infection Prevention

What infection control measures does my center follow?Which foods are safe, and which should be avoided.Whether tap water, well water, or bottled water is recommendedIf houseplants or gardening pose a riskHow sexual activity may be affected - ask about timing, protection, and hygieneWhat are my current restrictions - food, pets, public spaces?Are there guidelines for masking or distancing at home and in public?Can I have pets, and if so, what precautions should I take?What symptoms should I report immediately?

🩸Stem Cell Infusion/Day 0/Transplant Day

How many people can be in the room with me during the infusion?What pre-medications will I receive, and why?How long will the infusion take?What should I expect afterward: any symptoms or monitoring?

🤒Acute Graft versus Host Disease (aGVHD)

Is GVHD beneficial in fighting residual disease?What are the early signs I should watch for?How does GVHD differ from other post-transplant complications?What are the treatment options if symptoms don't respond to steroids?What does long term monitoring look like?

💊Medication Management

What medications can help with nausea or other side effects?Can I consolidate pharmacies to simplify refills?Are there flavoring options for liquid medications?What forms are available - pills, liquids, gummies?Can any medications be given through my central line?Are there alternatives if I have allergies or trouble swallowing?

🏠Hospital Discharge

Can I manage medications and dressing changes at home?Who is responsible for each part of care---me, caregiver, nurse?What symptoms should prompt a call or visit?Are there dietary restrictions tied to medications?What support services are available for emotional health and home care?

🏢Clinic Visits

How often will I need to come in, and for how long?What does the visit schedule look like after 100 days?Who do I contact for medication refills, supply issues, or symptom concerns?Are there restrictions on visitors or activities I should know about?What should I bring to each appointment?

💯Day 100

When can I start vaccines again, and which ones come first?What signs show that my immune system is recovering?Will I need labs or imaging before removing my central line?How will we taper immunosuppressants, and what symptoms should I watch for?

🚴Re-Establishing Normalcy

When can I safely return to work, school, or social activities?What accommodations are available, half days, remote options, tutoring, or at-home teachers?What symptoms should I watch for as I increase activity?Are there long-term effects from radiation or chemotherapy I should plan for?

🗓️Survivorship and Long-Term Follow Up

Why do I still feel like this - fatigue, brain fog, or emotional ups and downs?How often will I need bloodwork or imaging?Will my medication schedule change over time?Will I need to change hospitals or care teams as I transition to adult survivorship?

💉Revaccination

When can I safely start vaccines again?Which vaccines come first, and which are delayed?Will GVHD or my medications affect the schedule?Are there any vaccines I should avoid or repeat?

More tools coming soon: medication trackers, appointment prep sheets, and more.