The Blog Formerly Known As Practical Paralegalism
This isn’t my usual budget career style post. This is about my 16-year daughter’s choice to undergo an unrelated bone marrow transplant in an effort to cure her severe Sickle Cell Anemia.
For those of you who may not know what Sickle Cell Anemia is, it’s an inherited blood disorder that creates abnormal red blood cells that aren’t healthy, round, and viable for months, but instead are sticky, sickle-shaped, and short-lived. They ravage the body when they get stuck in the capillaries, and obstruct the flow of oxygen, in severe cases causing excruciating pain and organ damage.
The Teen’s disease was adequately managed for many years by an oral chemotherapy drug that increased her body’s production of fetal hemoglobin. It stopped working sometime in the last year. She had a mini-stroke, and now has to undergo a monthly exchange transfusion to decrease her risk of another stroke. Her disease tends to focus on her lungs; she’s had several attacks of Acute Chest Syndrome in the last 18 months. Without a cure, her chances for a healthy life, even with exchange transfusions, beyond a decade or so are not good. Her doctors recommended the bone marrow transplant to give her a chance at a normal quality of life. The outcome isn’t guaranteed. We’re experiencing a weird mix of hope, anxiety, and dread for the grueling year ahead.
I finally found the words to start her CaringBridge site back up, so we can keep family and friends (real and virtual) up to date. We’re also trying to raise awareness of Sickle Cell Anemia, and share the experience of the new cutting-edge medical advances that may offer the Teen, for the first time in her life, a chance at a cure. If you want to follow along, here’s the link: http://www.caringbridge.org/visit/keeceesunnysite.
I’m going to share this link at Patti’s wonderful weekly Visible Monday feature at Not Dead Yet Style, http://notdeadyetstyle.blogspot.com/. The Teen is visible, beautiful, and vibrant, even while suffering from Sickle Cell Anemia.
For more information about Sickle Cell Anemia, please see Sickle Cell Disease Association of America, Inc., http://www.sicklecelldisease.org/index.cfm?page=about-scdaa and the American Sickle Cell Anemia Association, http://www.ascaa.org/.