Jan 29, 2009 Latest post:
Apr 17, 2019
Welcome to Mia's Site! Mia was diagnosed on January 27, 2009, (at the age of 15) with Severe Aplastic Anemia (SAA); a rare type of bone marrow failure. As of October 2010, Mia was officially classified “in remission.”
We continue our fight to raise awareness, support other families and non-profits, fundraise to help find a cure, and hold blood drives and bone marrow drives in search of donors for others still battling bone marrow failure disease. (Mia had no matches on any registries.)
In the fall of 2008, Mia started having some "staring" seizures. She started taking some anti-elliptic drugs (AED's) more commonly known as seizure medicines. Lots of seizure medicines have side effects of blood count reductions.
Mia's energy level started to decline in December. After Christmas one morning, she could not get up on her own and was completely white. She needed to be hospitalized immediately. In January, a Hematologist started monitoring her blood counts weekly and did a bone marrow biopsy and aspiration. He then transferred her to UCLA Hospital.
On January 27, 2009, the doctor at UCLA did another bone marrow biopsy and aspiration - and she was officially diagnosed with Severe Aplastic Anemia (SAA). Aplastic Anemia means that your bone marrow does not produce enough red blood cells, white blood cells or platelets. As a result, Mia needed weekly red blood cell and platelet transfusions. We are so grateful for blood and platelet donors!
Mia went through her first round of Immunosuppressive Therapy (IST) on March 9, 2009. She had ATG (Rabbit) and started on cyclosporine. The ATG knocked her counts out but they never rebounded. At the end of the 1st round (6 months) she still did not have a response.
We started talking about a Bone Marrow Transplant (BMT) and found a doctor in Wisconsin, Dr. David Margolis at Children’s Hospital of Wisconsin, who specializes in pediatric aplastic anemia BMT's. We spoke with him on the phone, via email, and met with him personally (toured his hospital, met his staff and Mia had ANOTHER bone marrow aspiration and biopsy) July 29-31, 2009.
Mia’s sister Carly was not a match. We searched all bone marrow registries in hopes of finding Mia a donor for a Matched Unrelated Donor (MUD) Bone Marrow Transplant. We found out their were five potential 10/10 donor matches. The first donor turned out to be a 9/10 match; the next three were "unavailable" on the registry.. We were notified on October 6, 2009, that the fifth potential 10/10 matched unrelated donor (MUD) asked to be taken off the registry. That was devastating news to Mia and our family.
In the meantime, Mia had her second round of Immunosuppressive Therapy (IST) (this time Horse ATG) on October 19, 2009, at the National Institute of Health (NIH) in Bethesda, Maryland - under the care of Dr. Neil Young. In March 2010, Mia had a "partial response" to this treatment. By October 2010,, we were ecstatic to report her doctors classified her as "in remission."
While the search and need for Mia’s bone marrow donor has passed, we are still committed to raising awareness about rare bone marrow failure disease. We volunteer and actively participate in fundraising for other non-profits who are fighting this cause — the Aplastic Anemia & MDS Int’l Foundation (AAMDSIF) and the Julia’s Wings Foundation (JWF). Whenever possible, we hold blood drives and bone marrow drives for “Be The Match” (bethematch.org) the National Marrow Donor Registry, in search of donors for others still battling bone marrow failure disease.
Mia's blood counts continued to improve (little by little). She still sees her HEMONC doctor once a year for blood draws to check her counts. While her red and white cells were in normal range and she was classified “in remission” in 2010, it took several years for Mia’s platelets to reach “normal range” — the first time was September 2017. Our prayers are for Mia to stay in remission indefinitely.
We will keep you informed of any life changing events through journal entries and hope you will check in with us and leave Mia messages.
LIFE CHANGING EVENT: Mia got married in March 2019, at the age of 26 — a wonderful young man, her best friend, and long time love of her life. Mia feels great and life is beautiful.
Thank you ALWAYS — for your love and prayers for Mia (and her family). PEACE LOVE & BLESSINGS. The Stoutenborough Family Doug, Candy, Carly and Mia (our Warrior)