Aubree was still in the hospital when her birthday rolled around. We thought for sure that she would be out. It was very uneventful for her because she went into surgery that morning so the rest of the day she was sleeping of the effects of the drugs. I felt so bad because the staff kept checking on her to sing her happy birthday and to give her some presents, but she was always sleeping. Finally at 6 pm she woke up and we were able to give her a present and have cake. The staff rounded up as many people as they could to come and sing, it wasnt what we wanted but I was so glad that we were able to celebrate her first birthday.
One reason I like going to clinic is that you get to meet so many different people. Yesterday I had to run Aubree up to clinic because she was bleeding from her entry site on her central line. It wasnt a lot but they changed the bandage to one that would soak up the blood from the plastic one that she had. When I was waiting to check in I was able to talk to a mom who had a daughter who was 2 years old. Her daughter did have cancer but had SCID, the bubble boy disease. The way to "cure" that is to have a bone marrow transplant. Her daughter was around the same age as Aubree was when she had her transplant. I asked her about eating (that being my biggest frustaration) and she said that her daughter still has a hard time eating over a year later. In fact they had an NG tube for a year feeding her at night through it! It is good to know what to really expect, and granted every child is different but with Aubree not really eating anything but cheetos I think we are really in for a long hard battle. To think about it makes me so tired. I am so ready to be done, have her better, but I just dont think that its going to be that way.