When doctors found abnormalities in Rick's blood during routine testing for back surgery, Rick reflects it was "the beginning of an unplanned journey." Several months of testing and visits to multiple specialists resulted in Rick's diagnosis of myelodysplastic syndrome (MDS). Doctors in Atlanta, where Rick lives with his wife Jeannie and their three children, recommended a bone marrow transplant.
As doctors searched for a potential donor, Rick began his own search for quality information on his disease and treatment options. "It was important to me to understand my choices," Rick said. He explored reputable health care websites including the Be The Match® website, seeking information on his disease, transplant and related issues. He also consulted the New England Journal of Medicine and several well-known publications. Rick stresses the importance of doing your homework: "Only when you educate yourself can you make quality, informed decisions. Because in the end the decision must be yours and no one else's."
Ultimately, armed with an extensive amount of research, Rick decided to go forward with transplant. "Being involved and informed was integral to maintaining a positive attitude and confidence throughout the entire experience. I knew I was making the decision that was right for me."
Financial and logistical plans
Rick and his family began preparation for his transplant and temporary move across the country from Atlanta to Seattle where his transplant would take place. Transplant costs vary from hospital to hospital and some costs, like the unrelated donor search process, or relocation and housing expenses may not be covered by insurance. Rick found that Be The Match offers a variety of resources and tools to help patients prepare financially, including Mapping the Maze: A Personal Insurance and Financial Guide to Marrow and Cord Blood Transplant. Rick reflects that it may also be helpful for patients facing transplant to consult a certified financial planner.
A family friend owned a second home in Seattle and offered it to Rick and Jeannie for the duration of their stay on the west coast. The home had enough room for the entire family, but the couple made the difficult decision to leave the children with relatives in Atlanta so they would be able to continue attending school and maintain some degree of normalcy in their lives.
The couple also set up a website through CaringBridge (www.caringbridge.org/marrow) to keep in touch with friends from their church and community and to coordinate volunteer efforts. Jeannie and Rick made many friends in Seattle, and many friends from Atlanta came to visit and brought meals to Jeannie or took her out to dinner. Friends in Atlanta took turns taking care of the family's home and managing their finances. Families may feel overwhelmed when a loved one is sick and undergoing treatment. Asking for and allowing friends to show support and be of assistance during the transplant process can be helpful.
Preparing the family
Rick and Jeannie also undertook efforts to prepare themselves and their family for all possible outcomes of Rick's impending transplant by consulting an attorney and drafting both a traditional will and a living will.
Rick and Jeannie had honest discussions with each of their three children, presenting the transplant process and its possible outcomes in a straightforward, age-appropriate manner. Rick also made videos for each of his children to commemorate future events in their lives, in case he wasn't able to be present.
Jeannie prepared herself for her husband's transplant. She found several helpful publications on the Be The Match website. Among them was a book titled Across the Chasm: A Caregiver's Story, which chronicles the day-to-day physical and emotional effects of a loved one's bone marrow transplant. Jeannie kept this guide with her during Rick's transplant.
Today, as Rick continues to recover, Jeannie and Rick both say they worry less and are more grateful for what they have. Thoroughly preparing and establishing a large network of friends to assist during Rick's treatment and recovery has allowed them to maintain a positive outlook and focus on the present — living each day as the unique gift that it is.
Post-transplant note
Today, Rick remains leukemia free. He continues to recover from the transplant. His health varies day to day as his doctors manage GVHD and tapering of immunosuppressive medication.