Ashlyn Nystuen's Bone Marrow Transplant

Ashlyn is an 19-year old college student from Red Wing, MN.  Ashlyn is a gifted artist, a talented (scholarship awarded) soccer player and a loving kindhearted young woman.   Ashlyn is from a family of 6, her parents, Kerry and Katie, triplet siblings, Carson and Brooke and younger sister Reese. On October 15, 2019 Ashlyn went to the doctor for what was thought was a upper thigh strain.  Blood tests were taken and discovered that her blood counts were extremely low.  After spending a few hours in the ER in Red Wing, she was taken by ambulance to Rochester where she received a platelet transfusion.  She was then admitted to Methodist Hospital in Rochester for the next 10 days.  During her hospital stay a number of tests were performed to determine why her counts were extremely low and why she was unable to walk without extreme pain.  She had ultrasounds, x-rays, MRI's, and a bone marrow biopsy.  After what seemed like forever of waiting on results the doctors finally determined she has fluid around her pelvic joint and an infection in her pelvic bone.  She was diagnosed with aplastic anemia as well as a rare type of bone marrow failure syndrome called PNH (Paroxysmal Nocturnal Hemoglobinuria).  The only cure for this is a bone marrow transplant.   Ashlyn currently requires blood or platelet transfusions once or twice per week.  She travels several times per week for appointments or transfusions from Red Wing to Rochester.    Ashlyn has 3 siblings that were all tested and were only a 50% match to her bone marrow.  Doctors wanted a 100% match for the greatest chance of success.  So they turned to BETHEMATCH.ORG, the International Bone Marrow Registry.  December 12, 2019 a donor from the BETHEMATCH.ORG was found.  The donor is a 48-year old man from Greece who is a 100% to Ashlyn.  He has generously agreed to provide her with this life saving bone marrow. The bone marrow transplant is tentatively scheduled for early February 2020.  Prior to the transplant Ashlyn will have her eggs frozen (not a decision a 19-year old should have to make).  She will then have a round of chemotherapy and radiation to kill her bone marrow to prepare her body for her donor bone marrow.  Ashlyn will need to stay in the Gift of Life Transplant house in Rochester for approximately 3 months.  Katie (Ashlyn's Mom) will be her primary caregiver during this time and will need to take a leave of absence from her teaching position. Ashlyn has had to put college on hold indefinitely while she focuses on her health.  Due to her having extremely low white blood cell counts, she is very susceptible to any infections.  She has to limit her time in public so cannot work, attend school or even be in public areas without a mask.  Being an active, outgoing 19-year old, this is very frustrating for her.  Even family Christmas gatherings have to be adjusted because she cannot risk being exposed to even the common cold.  She has had multiple stays in Rochester during these few months because of spiked fevers. Ashlyn has a CaringBridge website for updates. It is a private account.  If you would like to join, please leave a note with the request. The website is https://www.caringbridge.org/visit/ashlynsjourney Because of Ashlyn's low blood counts, she cannot drive herself to her appointments.  Katie has used all of her PTO time and will take a leave of absence while Ashlyn recovers.   This reduces the family's income greatly.  While insurance covers most of the medical costs, we ask that you consider donating to this family so they can focus on Ashlyn's journey to health. If you cannot help financially, please consider registering your bone marrow with BETHEMATCH.ORG.  It is a simple cheek swab that could save someone like Ashlyn.