**Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**

In this podcast, Peggy converses with Leila Zengel, who shares her family's journey and challenges following her 10 year-old daughter Julie's bone marrow transplant. Julie, diagnosed with (refractory) Ph-like ALL in January 2018, underwent a  transplant in June 2018 at the Children's Hospital of Philadelphia (CHOP) with her brother Jacob as her donor. Leila, a former school counselor and educator, delves into the complexities of transitioning to a full-time caregiver role for her daughter.

The conversation begins with Julie's diagnosis and the subsequent need for a transplant, highlighting the difficulties in finding effective treatment. Leila describes her shift from a professional career to focusing entirely on Julie's care, emphasizing the drastic change in their family life. The process was challenging, as Julie did not respond well to initial treatments, leading to the critical decision for a transplant.

Leila shares the emotional and logistical challenges faced during the post-transplant phase, particularly the adjustments required when returning home. Living two hours away from the hospital posed additional difficulties. She speaks about the nuances of balancing care for Julie while managing the rest of the family, including her son Jacob. Leila's story is a deep dive into the realities of caregiving, from handling the medical complexities to the emotional toll on the family.

Leila talks about the importance of self-care for caregivers. Leila stresses the need for moments of rest and relaxation amidst the demanding role of caring for a child with a serious medical condition. She talks about the value of simple activities like puzzles and reading, which provided her with much-needed respite.

Leila also discusses the unexpected medical challenges that emerged post-transplant, such as chronic graft-versus-host disease. Despite these hurdles, Julie's gradual recovery is a testament to the resilience of both the child and the family. Leila highlights Julie's return to normal activities, including participating in the school band, as milestones in her recovery.

Family dynamics and adapting to a new normal at home are central themes. Leila explains how they navigated through changes, setting boundaries to protect Julie's health and creating new family traditions. She emphasizes the importance of living in the present and finding joy in small moments, reflecting on the perspective gained through this challenging journey.

Lastly, the role of support systems, particularly the medical team and communities like Momcology, is discussed. Leila underscores the value of these networks in providing support and understanding to families undergoing similar experiences. The podcast ends with Leila offering insights and advice for other caregivers, highlighting the importance of community, self-care, and focusing on the present.

Momcology Website: https://momcology.org/

Other Resources

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  https://www.sanofi.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

Welcome to Season 12 of the Marrow Masters Podcast, brought to you by the National Bone Marrow Transplant Link, and sponsored by Sanofi. This season focuses on one critical question. "I'm home. Now what?" You'll hear candid stories and advice from survivors and caregivers. This season, you'll also get valuable advice from a registered dietician and a social worker. Season 12 of the Marrow Masters Podcast is out December 19th, 2023. Don't miss an episode - follow our show for free on Apple, Spotify, YouTube, or at www.nbmtlink.org

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

Loriana Hernandez felt like she had it all.  She'd been a news anchor all over the country whose profile had risen nationally.  In her own words, she was a clean-eating, green-drinking, yoga enthusiast.  She had a two-year-old son, and was in the midst of fertility treatment when her doctor noticed there was something wrong.

Loriana had AML Leukemia, and a doctor contact at world-renowned Johns Hopkins told her "Get on a plane. Say goodbye to your son. You don't have time to waste. We have a bed waiting for you."  She had reported on these stories for years.  Now Loriana was the story.  In fact, she still deals with the PTSD from her son calling after her down the jetway - a son who wouldn't recognize her after she'd been away for months of treatment.

At Johns Hopkins, reality set in.  Because of her Cuban heritage, and lack of people of color on bone marrow registries, she was given a 25% chance of survival.  She was told to put her armor on, and she believes that her healthy lifestyle indeed helped her "armor up" for her battle, which included high-intensity chemotherapy.  At one point, she was sent home.  Doctors believed this might be her last chance to see her son.

Loriana did receive a bone marrow transplant from her sister, and was able to see her son before Christmas.  Throughout her treatment and after she was sent home to recover, she did was she was professionally trained to do as a storyteller.   Loriana reported.  She reported on all the trials and tribulations of the process, including the psychological challenges we don't often hear about.   This would later include developing breast cancer because of her chemotherapy, which she also survived. This time she was able to be with her son during treatment, which she saw as a win.

Loriana founded Armor Up For Life, a non-profit that helps people, particularly those in underserved communities, get healthy and prepare for the fight if they do indeed find themselves in a battle like she did.  They've coined the term "PRE-hab."

Armor Up For Life Website: https://armorupforlife.org/

Instagram: https://www.instagram.com/armorupforlife/

Facebook: https://www.facebook.com/armorupforlife/

Look for her podcast, "Stage Free," coming soon.

Other Resources

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  and The Leukemia & Lymphoma Society.

https://www.sanofi.com/

https://www.lls.org/patient-support

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

Peter Gordon is no stranger to the National Bone Marrow Transplant Link.  The author of "Six Years and Counting: Love, Leukemia, and the Long Road Onward"  was very well received at our book club.  Today you'll hear his story.

In 2008, this avid outdoorsman was living in the White Mountains of New Hampshire, and his girlfriend had just moved down from Montreal to marry him.  Soon after, he was diagnosed with leukemia and put on the transplant waiting list at Boston's Dana Farber Cancer Institute.  The wait for a donor was the hardest part for him, as weeks turned into months.

Eventually, Peter did get his transplant and returned to his idyllic surroundings to recover.  Soon after, his new wife slipped on ice and shattered her knee and ankle.   Peter had to take the role of caregiver as he continued his own recovery. 14 years after his transplant, Peter still battles chronic Graft vs Host Disease.  

During his treatment, he began writing a blog.  As Peter showed the outside world what his treatment was like, he discovered a passion for writing, eventually leading to the book.   He even has a section in the book on lessons for patients, called Many Medicines Besides Drugs.   Peter gives his advice, including writing down all of your symptoms, and understanding that your recovery will have peaks and valleys.  And you'll also hear a great piece of advice that Peter and his wife learned from - believe it or not - their cat, Gizmo. 

Link to Peter's Book: https://www.amazon.com/Six-Years-Counting-Leukemia-Onward/dp/1478750626

Other Resources

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Peter's book Six Years and Counting: Love, Leukemia, and the Long Road Onward

Peter's Writer/Speaker Facebook page

Peter's  LinkedIn profile

Thank you to this season's sponsors:

Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  and The Leukemia & Lymphoma Society.

https://www.sanofi.com/

https://www.lls.org/patient-support

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

We first met the incredible Sharde Fultz in our very first season of Marrow Masters,  back in 2019.  We wanted to reconnect with her as one our our "survivors who thrive" this season.

In 2009, Sharde was a college student, living on campus as a dance major with big dreams. Then she was diagnosed with non-Hodgkins Lymphoma.  Following chemotherapy and radiation, Sharde received an an allogeneic bone marrow transplant in 2011.  Having to leave school, she immersed herself in online support forums for young adult cancer patients.

When Sharde returned to school, between her recovery and chronic GVHD, she had to come to terms with some physical limitations.  While she still had a passion for dance, she'd need to pivot.   Her time interacting with fellow cancer survivors really sparked something in her.   She wanted to be able to related to not just other patients, but also people who looked like her.   She could fight against some of the inequities in our health care system.

Sharde connected with an organization called Next Step, which sends people on "campferences" - part camp, part conference.  She attended a campference in 2010, and now works for the organization.  Speaking engagements turned into a facilitator role for young adult cancer camps.  She's now the conference director, and is working toward a degree in social work.

Sharde's advice for fellow cancer survivors is to change how you think about time, and don't compare your journey to anyone else's progress.

Next Step Fund website: https://www.nextstepnet.org/

Cassie Hines Shoes Cancer: https://cassiehinesshoescancer.org/

Stupid Cancer: https://stupidcancer.org/

First Descents: https://firstdescents.org/

Camp Mak-A-Dream: https://www.campdream.org/

Other Resources

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  and The Leukemia & Lymphoma Society.

https://www.sanofi.com/

https://www.lls.org/patient-support

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

As a patient, Mike Rubin was at the forefront of bone marrow transplants when he received one in 1987 at the age of 24.  Today, he serves a director of philanthropic gifts for the very place he received his transplant - Seattle's Fred Hutch Cancer Center.

In the mid 80's, Mike was diagnosed with myelodysplasia, which would eventually morph into AML leukemia.  After consulting with some of the nation's leading cancer centers, Mike and his family settled on the institution that pioneered bone marrow transplants, The Hutch.  Mike's sister would be his donor.

Mike's journey changed his professional perspective.  This one-time New York ad exec needed to do something different.  He enrolled in nursing school but found that wasn't the best fit.  So he took some time, and became part owner of a whole grain, collectively-run, organic bakery.   This would would give him some time to recover and think about what he wanted to do next.

Mike went to law school, and soon found a passion for fundraising and working with philanthropic giving.  Not only had this native New Yorker fallen in love with Seattle, but he also felt a deep connection to the Hutch.   This led to Mike working for the organization that saved his life, and him paying it forward.

Fred Hutch Website: https://www.fredhutch.org/en.html
 

Other Resources

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  and The Leukemia & Lymphoma Society.

https://www.sanofi.com/

https://www.lls.org/patient-support

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

As a child, Molly Pratt had a fear of medical facilities.  Today, you'll hear how her perspective changed.  She's now a BSN, RN in Pediatrics at Beaumont Children's at Corewell Health's Beaumont Hospital, Royal Oak, Michigan.

Molly was an active 16 year-old high school student when she was diagnosed with Hodgkin's Lymphoma.  Her first round of treatment involved outpatient chemotherapy, but she eventually needed a bone marrow transplant, which she received in 2017.  Her priorities shifted from extracurricular activities and college tours to her inpatient recovery.

But her hospital stay changed her perspective. Her nurses became her social circle, playing card games with them late at night.  Inspired by her care, she decided to follow in their footsteps.  She now provides the same level of compassion to the kids she works with.  She's able to relate to their experiences, having been through the process herself.  In fact, she just had her final 6 month checkup, and she got to spend time with her patients in clinic, as a patient herself.

Molly leaves us with inspiring advice about not taking any day for granted, and having the confidence to accomplish whatever it is you set your mind to.

Resources

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  and The Leukemia & Lymphoma Society. 

https://www.sanofi.com/

https://www.lls.org/patient-support

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

Dr. Brad Zebrack is not only an incredible social worker who specializes in oncology but he is survivor himself. Brad was diagnosed with Hodgkin's lymphoma, at the age of 25, back in 1989.  

We spend some time on the term "survivor" - 40 years ago it referred to the family members left behind when someone died of cancer.  Now, a survivor is anyone who is still alive, starting from the moment of diagnosis.  But it's important to remember that every journey is different, and terms like this can mean different things to different people.

For some patients, they embrace "the new normal."  For others, they prefer to put their cancer journey "away in a little box" and not think about it, following treatment.  The important thing is that attitudes in oncology have changed.  The time after initial treatment is being looked at more carefully.

Positive attitude is a term that is also frequently misinterpreted.  While a good mindset has shown to have physical benefits, it doesn't necessarily mean being happy every day.  Brad explains that it's more about being OK with where you are each day.

We break down Julia Rowland's "5 D's of cancer" - distance, disfigurement, disability, dependence, and death.  Depending on a patient's age and where they are in life, each of these "5 D's" can factor into mindset differently.

Finally, we talk about the importance, specifically, of mental health care.  It's more widely discussed nowadays, and it's a vital part of care, both during and after cancer treatment.

Connect with Brad's teams on Twitter:

University of Michigan Rogel Cancer Center: https://twitter.com/umrogelcancer

University of Michigan School of Social Work: https://twitter.com/umsocialwork

Link to Handbook of Psychooncology, by Jimmie C. Holland and Julia H. Rowland (containing the chapter on "The 5 D's" of cancer mentioned today): https://www.amazon.com/Handbook-Psychooncology-Psychological-Patient-Cancer/dp/019504308

Other Resources:

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  and The Leukemia & Lymphoma Society.

https://www.sanofi.com/

https://www.lls.org/patient-support

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

Welcome to Marrow Masters Season 11, sponsored by The Leukemia & Lymphoma Society and Sanofi.

The National Bone Marrow Transplant Link, established in 1992 strives to help patients, caregivers and families cope with the psychosocial challenges of bone marrow/stem cell transplant from diagnosis through survivorship.

Season 11 of our show focuses on thriving in survivorship. We know it’s hard work. In this season, you will meet six incredible people who will share the challenges they faced as life happened, plans changed, and they learned to bend and grow post-transplant. Listen to what they have learned—how to be flexible and give themselves grace, and often time. This season will inspire us all to listen to our hearts and get on with the business of living, despite all that we have been through.

Follow the Marrow Masters podcast for free on Apple Podcasts, Spotify, YouTube, or via our website: https://www.nbmtlink.org/

Resources:

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  and The Leukemia & Lymphoma Society.

https://www.sanofi.com/

https://www.lls.org/patient-support

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

As this season focuses on Graft Versus Host Disease (GVHD), we thought we would start with the basics.  Today we welcome Melora Rennie, OTR/L, CLT-LANA, an Occupational Therapist from the blood and marrow transplant unit at Northside Hospital in Atlanta.  She helps patients who are battling various blood and marrow cancers such as leukemia, lymphoma, aplastic anemia, multiple myeloma and even sickle cell disease.

Melora explains the reasons for and different types of bone marrow transplants, from autologous to allogeneic.  In an allogeneic transplant, when you receive donor cells from someone else, you could face Graft Versus Host Disease.  Acute GVHD occurs in the first 100 days after transplant. Chronic GVHD relates to problems seen thereafter.

Chronic GVHD can attack many different systems in the body - from integumentary (skin), to respiratory, musculoskeletal, genital/urinary, neurological, ocular (eyes), reproductive, and vascular/lymphatic. Melora walks through the different presentations.  Additionally, transplant patients may also deal with cancer related fatigue and social isolation, which are both important to acknowledge. Melora will also address medication and side effects, including the impact of steroids.

In her role as an Occupational Therapist (OT), Melora is a key part of the rehabilitation team.  She and her colleagues help individuals develop, regain, or maintain skills necessary for engagement in daily living and meaningful activities - everything from waking up in the morning to falling asleep at night.   OTs can work in acute care, post-acute rehab, outpatient, in-home, or other settings.

Occupational Therapists address functional limitations, related to an individual’s cognition, activity tolerance, balance, strength, range of motion, and motor skills. They utilize a variety of therapeutic interventions in order to restore and maintain participation in the activities of daily life.  When working specifically with oncology patients, Occupational Therapists want to ward off any functional decline that may be associated with cancer treatment.  Related to fatigue, they assist patients with pacing and energy conservation techniques. 

OTs also work with cognition, pain management, and mental/emotional well being.  These are vital components of patient care that cannot be overlooked.  This can even include modifying a patient's favorite activity so they can continue to engage in it.  Melora and her team also provide training, education and support for caregivers, a crucial part of any patient's health care team.

We close this episode with the inspiring story of one of Melora's patients, as well as her advice to you and your loved ones, as you work through your transplant journey. There is hope and Melora will offer plenty of it. 

Links:

Northside Hospital: Blood and Marrow Transplant Group: https://www.northside.com/locations/blood-marrow-transplant-group-of-georgia

Northside Hospital's Rehabilitation Services: https://www.northside.com/services/rehabilitation-services

Other Resources

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to this season's sponsors:

Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)

Incyte: https://www.incyte.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd