The National Bone Marrow Transplant Link

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The National Bone Marrow Transplant Link Welcome to our page! nbmtLINK is dedicated to educating and supporting those that are on a

The nbmtLINK is an independent, nonprofit organization funded entirely through the generosity of individuals, corporations, and foundations. Tax-deductible contributions are welcomed and enable us to create and sustain programs and services.

Here is a great resource for those who are not aware.  They have great programs online to support cancer patients and he...
10/11/2026

Here is a great resource for those who are not aware. They have great programs online to support cancer patients and here is a good download on dealing with side effectshttps://www.cancersupportcommunity.org/sites/default/files/migrated/pdf/fsac_factsheet_series_coping_with_side_effects.pdf Here is their site as well https://www.cancersupportcommunity.org/

September 22, 2026Step by StepBy KAY HUNTER SABERnbmtLINK blog: Step by Step; Ramsey (center), my husband, Khalifa (left...
10/09/2026

September 22, 2026
Step by Step

By KAY HUNTER SABER

nbmtLINK blog: Step by Step; Ramsey (center), my husband, Khalifa (left) and myself, Kay (right).
Ramsey (center), my husband, Khalifa (left) and myself, Kay (right).
In April 2016, our youngest son, Ramsey, was diagnosed with Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ ALL). From that moment onwards, everything we knew as a family changed. What followed was two years of intensive chemotherapy in Spain, and then a bone marrow transplant in London in 2019.

My husband and I took it in turns at Ramsey’s bedside, alternating every 48 hours until we were too exhausted and had to go down to every 24 hours. Over the course of treatment, he was put under general anesthetic 23 times. We learned to feel his skin for fever -that’s one of the first things you learn. You learn to stay alert even when your own body is begging for sleep. There is no “off switch” when you are caring for your child through such an intense experience and you live in survival mode. This medical protocol meant weeks and sometimes months at a time in the hospital. To enable us to get through these endless days and nights we created healing spaces in his hospital rooms. We prioritized keeping everything super clean, often using essential oils where permitted, finding natural light where we could. We sourced bone broth and nutrient-dense foods and explored complementary approaches… breathing techniques, physical exercises both in and out of bed, all of which I have shown in written and illustrated form in the book, “Step by Step”.

After his transplant, our cancer nurse specialist, Filippo, asked me a question I have never forgotten. He wanted to know what we had done that meant Ramsey could leave the hospital early and, more importantly, not come back with a secondary infection. Up to 75% of patients develop a significant post-transplant infection. Ramsey did not. Filippo had seen the hospital rooms we stayed in, how we managed the space, and he felt it was something worth sharing. For seven years I have avoided writing about it. Procrastinated. Possibly just couldn’t. Ramsey’s story belongs to him and is not for me to tell. But Filippo’s question… it stayed with me and eventually I sat down and began to put together what became” Step by Step: A Parent’s Guide to Caring for a Child with Cancer.” It is not a medical book. It’s a practical, holistic guide, carer to carer, covering things like creating healing spaces, using food as medicine, building your support network, looking after yourself as the caregiver, advocacy, and emergency preparedness. All the things I wish someone had handed me on day one. It’s small enough to fit in a handbag, with notes pages at the end of each chapter so you can write down your own questions and concerns to take with you when you see your medical team.

I am hopeful that something in it will be of help. Even one tip, one piece of advice, if anything in these pages can help one other person — one child, one family – then Filippo’s question was worth answering. I want it to reach families when they need it and give them something practical to hold onto. Nine years on from diagnosis, Ramsey is here. We are no longer going to hospital for daily, weekly or monthly blood tests.

For the first time since 2016, we feel “off the leash.” I am only now just feeling, after all these years, that we are stepping back into the world of light. I don’t know how long that takes… it has taken us a very long time, but we are getting there. If you are reading this and you are somewhere in this journey, I want you to know that you are stronger than you realize.

Trust your instincts. Be your child’s advocate. Look after yourself too, learn to accept help when offered and on the difficult days, take it a breath at a time. Step by step. Paso a paso.

Here are the links to where the book is published:

USA – https://www.amazon.com/dp/B0GSX46FMP

UK – https://www.amazon.co.uk/dp/B0GSX46FMP

Plus, for a free PDF of our book, visit www.theoilchemist.com

10/09/2026
Emotional Preparation for TransplantPreparing for a bone marrow or stem cell transplant can bring many emotions—fear, an...
10/07/2026

Emotional Preparation for Transplant

Preparing for a bone marrow or stem cell transplant can bring many emotions—fear, anxiety, anger, sadness, hope, or even numbness. Your feelings may change from day to day. There is no “right” way to feel or cope.

Express Your Feelings

Give yourself permission to feel and talk about what you are experiencing. Reach out to supportive family, friends, a counselor, social worker, or another trusted person. It is also okay to limit time with people who increase your stress.

Connect With Others

Talking with someone who has been through transplant can help you feel less alone and provide practical encouragement. Consider a peer mentor or transplant support group where you can speak openly with people who understand the experience.

Reduce Stress

Focus your energy on what matters most and let go of less important responsibilities when possible. When people offer to help, give them specific tasks such as meals, transportation, errands, childcare, or communicating updates to others.

Find Ways to Calm Your Mind

Deep breathing, meditation, guided imagery, relaxation exercises, prayer, time in nature, music, journaling, or creative activities may help reduce stress and anxiety.

Stay Connected to What Brings You Joy

Continue activities that give your life meaning when you are able. Small things matter—a favorite movie, time outside, talking with someone you love, creating art, laughing, or doing something enjoyable each day.

Seek Reliable Information

Learning about your disease and transplant may help you feel more prepared and in control. Use reputable sources, ask questions, bring someone to appointments, and request clarification when information is confusing. Seeking a second opinion is also appropriate.

Prepare for Practical Matters

Consider organizing important medical, financial, and legal information before transplant. Advance care planning allows you to document who should make healthcare decisions for you if you are unable to speak for yourself. This is good planning and does not mean expecting a negative outcome.

Be Patient With Others—and Yourself

Family and friends may also be frightened or overwhelmed and may not always respond in the way you expect. Keep communication open when possible, while protecting your own emotional needs.

Most importantly, be gentle with yourself. Take things one day at a time. You do not have to be positive all the time to remain hopeful. Difficult days are part of coping with an extraordinary experience.

10/07/2026

October 20th, 20264:00 PM PT / 5:00 PM MT6:00 PM CT / 7:00PM ET

10/06/2026

What’s next for CAR-T? Explore the latest advances in in vivo CAR-T and what they could mean for the future of cellular therapy.

Access this ASTCT webinar: https://ow.ly/gXxR50ZSqHw
Thank you to Johnson & Johnson and Legend Biotech for their generous support of this webinar series.

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