In 2010 our world was turned upside down when my four year old daughter Kinlee was diagnosed with SAA (severe aplastic anemia), a rare bone marrow diseases that depletes your red blood cells, white blood cells, and platelets. One day I noticed a lot of nose bleeds and bruising and her energy level was zero, she should have been running circles around me but she mostly slept on the couch. I called our regular pediatrician and she said it sounded like low iron so we put her on iron supplements but it just seemed to be getting worse and worse.
On Super Bowl Sunday 2010 we went over to a friends house to watch the game. They both happened to be nurses, they took one look at her and told us to get a second opinion ASAP because she looked yellow to them. The next day (Monday) I made an appointment for Friday. On Wednesday, February 10th, I got a call from her Dad at work saying something was really wrong with her he couldn’t get her to wake up for lunch. I rushed her into the first doctor that could get us in that day where my sister worked and they did a blood test right away.
The doctor came out shortly after and told us we needed to get her to the ER at a Primary Children’s Hospital right now because she needed a blood transfusion. Totally confused we rushed to the hospital calling family on the way telling them what was happening and making arrangements for our one year old daughter, Alexis, to stay with a friend. When we arrived at the hospital they had us in the big resuscitation room where they put the kids that aren’t likely to make it through the night (we didn’t know this at the time that’s where we were). They placed an I.V. and started a blood transfusion right away and told us if we had waited until her appointment on Friday she would’ve died from lack of oxygen due to no red blood cells.
I was a sobbing guilty mess at this point. After three of the longest days of my life the doctors came to tell us she didn’t have leukemia which is what they thought she had and told us her diagnoses was SAA. None of us had even heard of it but that it was far progressed and she would need a bone marrow transplant as soon as they found a match. Then came the waiting. After countless transfusions, hospital stays for fevers, and bleeding complications due to no platelets, four months later they found an umbilical cord match for her. She received her bone marrow transplant one week after her fifth birthday on June 24, 2010. She had a rocky recovery but finally started a semi normal life about a year and a half after her diagnoses.
Now fast forward to October 2012, five weeks into first grade I noticed the bruising and petechiae bruising all over her. I rushed her to get a blood test and sure enough…It was back. A few months of more transfusions and hospital stays and they had found another match. She received her second transplant December 27, 2012. She was in deep depression at this point. She had no friends, just nurses, doctors, and hospital life. We finally went home five and a half weeks after she engrafted. She’s the most amazing, funny, and brave person I know. We went through so much as a family and endured a heart break twice that I wouldn’t wish on anybody. We are so grateful to have her everyday.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.