AJ's Story - Diamond Blackfan Anemia

four.

AJ and her mom had arrived at the Children's Hospital around 4:30 p.m. and it was now almost 9 at night. They had been settled into a room on the Hematology Ward, and after receiving a dearly needed blood transfusion, AJ was already looking a great deal better. She had woken up a few hours ago, just in time to see her stepfather Derek and her little brother Ren for a little while. Derek had brought her some real clothes, so she could change out of the revolting hospital gown. AJ was very grateful.

Ren was only nine, and was very anxious about his big sister. AJ felt awful about being the cause of his worry. Once she had changed into the pajamas Derek brought, she sat on the floor with Ren and they played with the LEGOs he brought. Seeing that AJ was able to play with him made him a great deal less worried, and he was in a considerably better state of mind regarding his sister's well-being when he left the hospital with Derek. 

AJ was still receiving fluids intravenously, and trying to fall asleep with tubes in her arms was much more difficult than she had expected, despite her exhaustion. Somehow she managed to fall asleep around one in the morning. 

Julie woke up at six, after crashing on the couch. She notified her office that she would be taking the day off work, due to her daughter's condition. She also called AJ's school and dance studio. 

"Mom?" she heard a sleepy voice say. 

Julie turned around. "Oh, you're awake! Good morning honey- did you sleep okay?" 

AJ wrinkled her nose, "Eh."

Julie offered a small smile. "Well, I'm going to go find some breakfast. Do you want anything?"

"I mean, you might want to check in with the nurse's station first, to see if it's okay. But if you find a yogurt and a coffee machine..." AJ raised her eyebrows in anticipation of coffee. At fifteen, she was a sucker for black coffee, which none of her friends understood.

The nurse that Julie checked in with for directions to the cafeteria, and making sure of AJ's breakfast order, said that they should probably hold off on caffeine for now, so Julie got her daughter a strawberry smoothie instead. 

As the two were "enjoying" hospital food, a nurse cam in to check AJ's vitals and alerted them that the doctor from yesterday and a specialist named Dr. Cambriel would be stopping by soon.

...   <3   ...

The specialist introduced herself, and the doctor from yesterday apologized for not stopping by yesterday evening. Then, they got straight down to business. Dr. Cambriel said that while she worked with a variety of blood and bone marrow disorders, she was currently heading a research team looking into treatments for Diamond Blackfan Anemia, which was what she believed AJ had. 

"Diamond Blackfan Anemia is a type of bone marrow failure where the bone marrow does not produce enough red blood cells for the body to function. It is most often diagnosed by the time a child reaches elementary school, but there are a few exceptions where symptoms do not present until later in life. It is generally a lifelong condition- a chronic illness. But provided proper care, it is possible to lead a fairly active and healthy life post-diagnosis. Once AJ's diagnosis is actually  confirmed, we can go over treatment options in depth."

"So from looking at your complete blood count from before your transfusion yesterday," she said, pulling up a chair by AJ's bed, "Your red blood cell count was dangerously low, which is one of the indicators of DBA. The only way to really confirm this diagnosis though, is a bone marrow biopsy, which I want to schedule in the next few days, and genetic testing."