Denial, anger, bargaining, depression, acceptance. How many times do I have to go through those 5 stages? Some days I might not even think of them. Then there is today. I just hate this disease. I have accepted the fact of it, of what it is doing to my child, to my wife and to me. I have accepted the fact that we need to put our daughter through a horrible procedure to hopefully allow her to get better. But sometimes the disease wins a battle in the war. It takes little pieces of me daily. I try to be hopeful and optimistic and I think some of the time I am. Other times not. I am not second guessing our decision to go through with the stem cell transplant, just venting. I am hoping this will be cathartic.

Today Jackie and I were changing her diaper and I was reading her the “I Love You” book. It’s been one of her favorites every since her former nurse, Lissette, got it for her. Anyway, each page starts with “I love you when…” whether that be when you are scared, when you are stinky, when you are silly, when you hide my keys, etc. One of the pages says “I love you when you make new friends.” Rafi’s response was “I have no friends.” My heart hit the floor. My stomach got queasy, my throat tightened up and I could feel the tears starting to well up. Another little piece ripped out and stomped upon by the heavy foot of EB. When we moved here from New York City we thought we were going to start in December, then in January, now in February. We felt it important to keep her away from other kids during cold and flu season for a couple of weeks before the transplant. Now it’s three months later. In the three months we’ve been here, Rafi has had two interactions with other children. That’s a long time to be without child interactions for a 2 year old. So before her daily dose of Sesame Street, we played some home videos of her and her friends from home. I hope that helped. I don’t ever want to hear her say that again.

Another thing I never want to hear again is “Daddy you hurt me.” She’s told me that twice recently. Once during a bath and bandage change and today. I caused a blister on the palm of her hand. I watched as the blister filled with liquid and as it grew on her hand. I watched as her body writhed in pain when it first happened. Her cries penetrating my body like a fog horn going off two feet away. Jackie and I have told every nurse whose been involved with her care that you aren’t part of the family until you’ve left a mark on her. Until you have hurt her once. I’ve seen a couple of them cry. I accept the fact that I am going to hurt her on occasion. It just makes the other stages more prevalent when Rafi verbalizes it when I do. I hate this disease.

I am beyond the denial and was never one for the bargaining. But the anger, and depression still raise their ugly heads. Especially on days like today.

I am hopeful that this transplant will lessen her pain, her itchiness, and her general discomfort. I am hopeful that this transplant will allow her to eat those green cookies that she always asks for and wants constantly. I am hopeful. I am hopeful. I am hopeful. It seems like a nice mantra and with that, I bid you goodnight.