The MDS Beacon » Links

Larry’s MDS Journey

Linda Vuong — Thu, 18 Nov 2010 18:08:38 +0000

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.

Dancin’ in the Rain

Linda Vuong — Thu, 18 Nov 2010 18:05:37 +0000

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.

Li Leng’s Blog

Linda Vuong — Tue, 09 Nov 2010 00:21:45 +0000

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.

Kevin Pirkle on the ‘Net

Emily Plummer — Mon, 08 Nov 2010 22:33:00 +0000

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.

Yoko-MDS

Emily Plummer — Mon, 08 Nov 2010 22:31:09 +0000

Yoko was diagnosed with melodysplastic syndromes in September of 2009, and in May of 2010 found that she would likely need a bone marrow transplant. Yoko blogs in Japanese, and her daughter and husband co-blog in English to help explain medical information and discuss the disease from a multicultural view. They post every few days and offer a perspective from a minority and immigrant MDS patient in America.

A New Kind of Normal …

Emily Plummer — Mon, 08 Nov 2010 22:29:25 +0000

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.

Myelodysplasia – My Journey – Letters to a Friend

Linda Vuong — Tue, 02 Nov 2010 20:52:44 +0000

Shirley Bulloch was diagnosed with MDS in June 2000 and started blogging about her experiences later that year. She received a stem cell transplant on March 15, 2003, the day she calls her re-birthday. Now cured of her MDS, Bulloch continues to update her blog with details about her life and her recovery from side effects caused by the stem cell transplant.

Team Krissy

Scott Auerbach — Mon, 01 Nov 2010 14:41:33 +0000

Krissy Kobata was diagnosed with myelodysplastic syndromes in 2008 at the age of 28. She is currently trying to find a donor for a stem cell transplant. Krissy is involved with Asians for Miracle Marrow Matches, an organization that seeks to recruit people of Asian descent into bone marrow registries. Krissy’s blog is updated a few times per month with information about upcoming marrow drive events and fundraisers as well as personal experiences.

My Life Post-Cancer

Scott Auerbach — Mon, 01 Nov 2010 14:40:14 +0000

On “My Life Post-Cancer,” Roger Contreras reports about his life as a myelodysplastic syndromes patient who underwent a donor stem cell transplant. He shares his thoughts and worries about the implications of the disease and informs his readers about upcoming fund raising events and blood drives. Contreras was diagnosed with MDS in July 2008 at the age of 40. He is also the author of the blog “I Have MDS”, which he started soon after diagnosis and maintained until May 2010.

Helping Tami

Scott Auerbach — Mon, 01 Nov 2010 14:38:25 +0000

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 several times per month with information about Tami’s health and about blood and marrow drives.