The MDS Beacon™

Jacquelyn Buckley was diagnosed with myelodysplastic syndromes at the age of 27 in June 2009. After months of oral chemotherapy, she went into remission for 57 days. Her disease progressed to acute myeloid leukemia, and she had a stem cell transplant in August 2010. She blogs every few days about her support system made up of her husband and parents, and the realities of treatments and side effects after stem cell transplant.

Angela was diagnosed with myelodysplastic syndromes in August 2010 after being “cancer free” for over two years. She started her blog after being diagnosed with non-Hodgkin’s lymphoma in 2007. She posts on her blog around three to four times per month, updating readers on her life. Her early posts cover the treatments and medical examinations she receives post-chemotherapy, as well as the effects of the non-Hodgkin’s lymphoma on her everyday life.

Sandy was diagnosed with MDS in January 2009 at the age of 62. Soon after diagnosis, she started blogging about her condition and treatment with Vidaza. After Vidaza treatment became ineffective, Sandy received a stem cell transplant in February 2010. She updates her blog every few weeks and includes information about her family, her faith, and the trips that she takes.

Tami, a mother of two young children, was diagnosed with myelodysplastic syndromes in February 2009. Her cousin, Stacie, writes this blog, in which she describes Tami’s diagnosis and subsequent receipt of a stem cell transplant in June 2009 from a donor identified through the National Marrow Donor Program.  Stacie documents Tami’s experiences as a patient and as a stem cell recipient, which includes the story about meeting her donor.  Tami is currently in remission. Stacie continues to update her blog…

Kevin Pirkle was diagnosed with low-risk myelodysplastic syndromes in March 2010. He is a father, and his blog focuses on his family life and working closely with his physician to get his blood cell levels stabilized. He posts every week or two about family and the ups and downs of treating his MDS.

Larry Roberts’ wife Jean started blogging about his MDS in January 2009.  She continued chronicling their experiences as Larry traveled to Houston to prepare for and ultimately receive a stem cell transplant.  Jean credits their faith, family, especially Larry’s sister who was his donor, and friends for helping them through the journey.  The blog was maintained until October 2009.

Fifty-five year-old Li Leng is a wife, mother, and grandmother who began blogging shortly after being diagnosed with multiple myeloma, a cancer that affects the plasma cells, in May 2007. She was diagnosed with MDS in 2008. She discusses her treatment and side effects while sharing interesting details about her life in Singapore.

Mark Rutherford, a musician based in Ontario, Canada, was diagnosed with myelodysplastic syndromes in December 2009. He progressed to acute myeloid leukemia by August 2010.  He began writing a blog shortly thereafter, updating it regularly. He writes about his treatment at Princess Margaret Hospital in Toronto as well as setbacks, advances, and the support he receives from fellow musicians and family.

Aldeane Sööt was diagnosed with myelodysplastic syndromes (MDS) at the age of 52 after a routine doctor’s appointment in September 2002. She received a bone marrow transplant from her sister in November 2002, and her MDS is in remission. She and her husband Peet Sööt jointly posted on their blog until July 2009, offering advice and personal recollections of their experiences with MDS, the transplant procedure, and outpatient care from the perspectives of both patient and caregiver.

“What happens when you’re diagnosed with a disease you’ve never heard of – Myelodysplastic Syndrome”
Blending facts, fears, and witty remarks, this blog is a cleverly written commentary on one man’s experience with MDS. A freelance writer from New Jersey, Mitch started his blog when he initially found out he had MDS back in spring 2009, and in it he details facts and figures about the disease, addresses the rollercoaster ride of coping with cancer, and offers inspiration in…