In 1989 I was diagnosed with non-Hodgkin’s lymphoma. I was 29 years old, five months pregnant and had a two-year-old daughter. I had a grapefruit size tumor attached to my lung and my doctors planned to prolong my pregnancy by giving me half the radiation they would normally use to shrink the tumor. I gave birth three weeks early and began chemotherapy immediately. I was treated for six months, all while caring for a newborn and toddler.
The tumor shrank but then began to grow in another area so I was told I needed a bone marrow transplant to save my life. I was directly admitted into the transplant unit where I remained for seven weeks. I had a great support system, with my husband visiting daily and other family members as well, but not seeing my children for over a month was extremely difficult. I was a young mom and could not imagine my daughters possibly growing up without a mother.
While being treated at Mount Sinai Hospital in New York City, Christina Merrill, now the founder and Executive Director of The Bone Marrow Foundation, was my social worker. Christina’s visits helped me get through the seven weeks inpatient and I continued to see her during my outpatient clinic visits as well.
It has been 26 years since my transplant and I am feeling great! My daughters Shari, 29, and Michelle, 26, are amazing and my husband Andy is now a trustee of the Foundation. I was a dental hygienist for 30 years and retired in 2014. Since retiring, I have been volunteering at the Foundation and it has been great for me to be able to help support an organization that is so meaningful to me and to my family.
As I read the hundreds of patient applications each week requesting support for caregiver expenses, lodging near the hospital, transportation, food, insurance co-pays and other financial needs, I am grateful the Foundation is able to assist them and their families during such a difficult time in their lives. Volunteering at The Bone Marrow Foundation is so rewarding for me, especially knowing the time I invest allows the Foundation to help more patients who are struggling.
This year, eight runners will be representing The Bone Marrow Foundation in the TCS New York City Marathon. Among them is one of the Foundation’s own social workers, Robin Myers.
“I’ve always wanted to run a marathon, just to prove to myself that I could. This not only challenges my mind and body, but running for The Bone Marrow Foundation helps me be part of something bigger than myself.”
Robin has decided to dedicate each of the 26 miles to a different BMF patient. Since joining the team in early September, she has shared the heartfelt stories that have inspired her to run, along with spreading awareness about bone marrow and stem cell transplants.
“This is my first marathon. Although I’m nervous, working with people who are fighting for their lives is helping me train harder and will push me to complete this marathon. That’s why I’m calling it a marathon journey – it’s my own way of giving back to a community of people who I respect and inspire me.”
Robin’s work calendar is filled with weekly appointments and reminders to call patients or family members in need of assistance. When she switches to her marathon training calendar, it fills with reminders of how long to run or what type of cross training to do each day. Robin currently uses Skyfit’s training program to prepare and enjoys running in Central Park.
“This journey allows me to bring awareness of how many diseases and illnesses are being treated with bone marrow and stem cell transplants and the importance of joining the national bone marrow registry. My third mile is about Caitlin, she’s 12 years old and is waiting to find a match. She’s of mixed race and as a result has not been able to find one. We live in such a diverse nation, it’s hard to believe there is no match for her. Just as people donate blood, being on the bone marrow registry should be just as important.”
Working with patients and their families throughout their transplant journey can be difficult. Robin dedicated her fourth mile to a patient, Molly, who recently passed away after a long fight against a rare genetic disorder. “I wanted people to be aware that the transplant journey is a long one, and although it is not always the answer, it can give patients an opportunity at life without their disease. Transplants give patients hope and the chance to keep fighting.”
You can follow Robin on her journey here.
Patrice Hunter is a transplant nurse at Memorial Sloan-Kettering Cancer Center in New York City.
I have worked with the bone marrow transplant (BMT) population for nearly six years now. Prior to working with BMT patients, I could have never appreciated all that a bone marrow transplant entails. Caring for a BMT patient is all about attention to detail. I believe the BMT nursing practice reflects that detail. The role of the nurse as part of the BMT team is to care for the complex needs of BMT patients, including the conditioning period prior to the transplant and the recovery phases following transplant. Nurses are strong advocates and provide a wealth of support that is focused on the transplant patient and family.
Bone marrow transplant patients amaze me every day and I feel blessed to have the opportunity to care for them. Witnessing their courage, strength, and resilience through the hardships of transplant keeps me dedicated to my job. Undergoing a bone marrow transplant can be difficult and stressful. However, the right amount of support can make all the difference to patients and families alike. I have had the privilege of witnessing and remain grateful to The Bone Marrow Foundation for the amazing services and programs available. The Foundation provides a source of hope to patients and families through financial, educational, and emotional support as they battle their diagnosis.