I spent much of this week in the pediatric intensive care unit with my sweet cousin, Anne and her amazing parents. For those of you who don't know, Anne is 17 years old and has Down's Syndrome. She was diagnosed with biphenotypic acute leukemia on February 1st of this year. The past 8 months have been full of chemo, infections, blood and platelet transfusions. One complication after another. We almost lost her around Easter of this year. It was heartbreaking.
Through all of this, Anne, amazing Anne has remained brave, even when she didn't really understand why this was happening to her. She just knows she is really sick and has to go to the hospital a lot. After getting a shot from her nurse, Anne would cry sometimes and then rub the arm of her nurse, as if to console her. When her doctor came in to assess her when she was at her sickest, Anne still found the strength to raise her arms out for a hug - causing a typically stoic attending physician to have tears in her eyes.
My mom and I were there the day she was diagnosed. What an awful day. I remember my aunt, whom I love dearly, twice collapsing in my arms with grief. Why was this happening to this innocent girl with a soul as pure as any I will ever meet?? "Stay strong, Katie." I told myself over and over. They need you now.
Even during my darkest days, I would somehow summon the strength to get to that hospital. There have been so many times I have explained all that is happening to her to my aunt and uncle, after all, oncology is my specialty as a nurse. I just want to make this a little easier for them - the most loving parents Anne could ever have. I want to put a smile on my aunt's face when Anne is in surgery, make them laugh, ease their burden, hug them as hard as I can and tell them she is going to be okay.
That girl. God, that girl is amazing. Helping take care of Anne has helped me. That beautiful soul has made me better just by being around her. Seeing her smile when I walk into the room makes me think I can put the anorexia away for the day. I do better. She is healing me. This sick little girl is healing me more than any therapist ever could. That face, her face makes me smile, makes me warm inside, makes me cry, makes me shake with fear at the thought of ever losing her.
Anne was just in the PICU because my aunt, with the eyes of an eagle, noticed swelling in her left arm. Turns out, she had a HUGE clot along her central line, completely occluding her subclavian vein. This vein drains directly into her heart. It was at least four inches long. Her surgeon, a handsome, young Greek man with a name I can't remember (I call him Dr. HOTsisopolis - sounds Greek, right. Wonder if he's married...I digress) carefully explained the procedure she would need to safely remove this clot.
This was a huge challenge. To safely remove this clot, they would have to thin her blood. She is already prone to bleeding because of how the chemotherapy affects her blood. Thus, the three day stay in the PICU. Anne went home yesterday, only to return this Tuesday for more surgery to remove the central line. (I hope Dr. Hotsisopolis is there...sigh...).
Anne is going to be singing with her school choir in two weeks. When she was getting ready to be discharged, she sang a song for all of us. She was off key, off rhythm but it may have been one of the most beautiful things I have ever heard. Three nurses, my aunt and uncle and I a listened and applauded when she finished. She smiled and ducked her head, being a bit shy. My heart broke into little pieces. She is a wonder. I love that girl. Please, please don't take her away from us.
Just because I smile and laugh at the hospital, doesn't mean don't come home and cry. And pray that we get to keep her.