Nov 27, 2020 Latest post:
Jan 13, 2021
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
As many of you know Emma was admitted to Rainbows late in September after a long summer of excessive bruising and finally a cut that wouldn’t stop bleeding.
Upon admission she was given platelets and blood transfusions to stabilize her. They ran a million labs and did a bone marrow biopsy. Seven long days of tests and transfusions but no diagnosis. Emma presented very similar to a Leukemia patient, but as the tests started to come back, Leukemia was starting to not look like the cause of her extremely low red blood cell and platelet counts.
Discharge came after seven long days but it didn’t come with a diagnosis, unfortunately. Emma has been outpatient since that early October discharge. She has went to Rainbows like a champ, 2-3 times a weeks for IV’s, labs, and blood and platelet transfusions.
Mid October we finally knew that Emma most likely had a bone marrow failure disorder of some sort. Shortly after they started really leaning toward Aplastic Anemia. Finally a week later we got the official diagnosis of Severe Aplastic Anemia. Emma’s little body was only producing 5% of what it should of red blood cells, white blood cells, and platelets. The only chance of a cure for SAA is a bone marrow transplant. We were all tested and sadly, no one was a match. We quickly found out though that there were TWO unrelated donor matches in bank (heros!)!!
As our team continued to test both donors against Emma for the best possible match, Emma started the long journey of getting tested for everything you could think of: Labs, MRI, CT, EKG, Echo, eye exam, dental exam, breathing test, radiation consult and measurements...you name it. They need a baseline for everything before transplant.
Finally we received our calendar of treatment and an admission date of Thanksgiving November 26th, 2020!
We have been so grateful for the friends and family that jumped into action as our heads were spinning and we couldn’t see straight. The friends and family that watched our children, brought them meals while we were away, delivered them their favorite things and groceries, sent Emma gifts and snacks that kept her smiling and her mind off the pokes and long nights, cried outside of Rainbows with me, danced and waved signs outside of Emma’s hospital room window...the list is never ending! THANK YOU! ❤️
So here we are, the journey has begun for our sweet Emma and she is about to kick some SAA butt! 💪🏼