More 101 things...#57

#57 on my 101 things list (Register to become a bone marrow donor) is quite a personal goal for me. A few years ago, my friends Carissa & Eric’s daughter, Sicilia, was diagnosed with Acute Lymphoblastic Leukemia at age 2. Seeing their family go through such difficulty and Sicilia’s constant treatment and strength inspired me to do something. Sicilia didn’t require a marrow transplant (and I’m happy to report that she has completed all her treatments and is cancer free), but I know that many kids (and adults) do. Had Sicilia required a non-related donor, I would have registered to become one on the spot.

This weekend, the opportunity presented itself for me to complete #57. I was at Lahey Clinic’s Cancer Walk as a volunteer face painter. When things slowed down for a bit, I went to check out the information tables and came across the Caitlin Raymond International Registry (CRIR) - a pioneer in the establishment of procedures and practices for stem cell donor search, is the oldest coordinating center for bone marrow, peripheral blood stem cell and placental cord unit search in the United States. Affiliations with 97 international registries and cord blood banks in 46 countries enables us to access nearly 7,800,000 donors and nearly 260,000 cord blood units.

Registering was quite simple - 4 cheek swabs and a registration form. The samples get sent to a lab to be tested and typed. I found out that there is a law requiring health insurance companies pay for this type of testing. I hope Tufts doesn’t hate me now. I still have to give them a little more information (that I didn’t have on me when I was there), but then I’ll officially be registered as a bone marrow/stem cell donor.

Some information about the registry:

The Registry was founded by Joanne Raymond in 1986, following the search for an unrelated bone marrow donor on behalf of her daughter, Caitlin. Born in Seoul, Korea in 1980, Caitlin Anna Raymond was adopted by Joanne and Michael Raymond in 1982. At 18 months of age, Caitlin began her new life in the United States and her parents had all of the dreams and hopes that every parent has for their child. But in 1984, Caitlin was diagnosed with juvenile chronic myelogenous leukemia (JCML). Caitlin's only hope of a cure was a bone marrow transplant and, as a child with no biological family available to donate, her condition was considered incurable. Rather than return home to watch their daughter die, the Raymonds began a tireless search through international blood banks, praying that a match could be found to give Caitlin a second chance at life.

It was during this search that the Raymonds discovered that very few donor sources existed and that each had to be searched individually for its few available donors. A year-long search was begun and letters were sent to any blood bank that stored the HLA typing of tissue or solid organ donors. With the assistance of laboratory personnel around the world, additional compatibility testing was performed on potentially matched donors. After months of work, it was with great joy that a donor was located through the Anthony Nolan Trust in London. Without a single thought of herself, Edna Grint, Caitlin's donor, left her village in England for the first time and boarded a flight to the United States to help a perfect stranger.

Caitlin received her transplant in March of 1985 and engraftment of the donor's marrow occurred. Sadly, she died three months later due to complications from the transplant and prior treatment. But the work did not end there. Hoping to assist other parents in their search for an unrelated marrow donor, Mrs. Raymond established an international search coordinating center at the University of Massachusetts Medical Center to perform searches through worldwide donor sources for any patient in need.