Adoptees Speak, "Embrace Yourself!"
All Adoption Stories
From Birth Mother to Forever Mother: Connecting over 7,900 Miles
Your daughter is sick. She will need a bone marrow transplant.
Beyond processing that news about your eight year old daughter, imagine now realizing that finding a donor is a virtual needle in a haystack reality because she is an adoptee with no known living realatives.
Where does a parent begin?
This is Phoebe's story...
Our eight year old daughter Phoebe is a fun, energetic, and engaging girl. She likes taekwon do, cheerleading and kayaking.
Aside from typical childhood illnesses--colds, ear infections, etc--she was a very healthy girl as well. Until late August 2015.
She started third grade on Monday, August 24th. As always she was excited to start school, meet her teacher, and see her friends. She was exhausted when she came home that night; we chalked it up to her being tired from a busy weekend and having gone to day care for the first time and starting school.
This continued the entire week. In retrospect, Phoebe became quieter and quieter--definitely not typical behavior for her. We took her temperature throughout the week but all seemed ok.
That Sunday at a family event she was even more withdrawn--at one point she even went away to lie down. That night she showed a fever of around 101--we gave her Tylenol but early Monday morning the fever returned even higher. We took her to our pediatrician's walk-in hours, who initially diagnosed it as either mono or a mono-like virus.
Throughout the week Phoebe had high fevers but they always went down with Tylenol. Eventually though we took her to our local ER, which after a few hours sent us to Children's National Medical Center in Washington, DC.
DIAGNOSIS AND WAY AHEAD
After several days, and many more blood tests, Phoebe was diagnosed with hemophagocytic lymphohistiocytosis, or HLH. This is a rare and potentially life threatening illness where the immune system is defective.
Treatments do exist for HLH. We're lucky at Children's--we have a great team of hematologists as well as other teams working to get Phoebe better. Ultimately, Phoebe may require a bone marrow transplant.
Here's the kicker--Phoebe was adopted from Korea. Bone marrow matches are difficult enough under normal circumstances--but the bone marrow registry is heavily canted towards Caucasians. There are comparatively fewer potential matches for minorities--Asians included.
We're working to change that--expanding the registry potentially benefits so many that need a match.
Why Ethnicity Matters for Bone Marrow Matches
"Diversity" has become something of a buzz word in corporate circles; it's used in vision and mission statements, and you'd probably be hard pressed to find a company's core values that didn't reference diversity in some way or another.
When it comes to the National Marrow Donor Program registry, minority donors are significantly underrepresented, as these numbers from Be the Match.
Caucasians have a 97% chance of finding a donor match
African-Americans have a 76% chance of finding a match
Asian-Americans have an 84% chance of a match
American Indians and Alaskan natives 90%
Hispanics have an 83% chance of a match
Please view this video by Be the Match to understand the process of bone marow donation. As you watch it keep in mind that Phoebe's story could be any one of our adopted children's story.
The dance to attachment was beginning for us but we were nearly four years late to the party
Benjamin deserves a life
What is this thing called sleep?
Universal adoption issues that trigger emotions that are experienced, to some degree, by every single adoptee
In 1946 Spence-Chapin challenged the notion that African American families were not interested in adoption to respond to a crisis
Books provide a meaningful window into the culture to which they were born
Even among a community of orphans, she still only saw herself as a family of one
Adoption at the Movies is the ultimate collection of films exploring adoption