Tuesday, August 12, 2014

Day +12

Day +12 was a rough one. Last night I stayed with Katlyn as it was my turn. She woke up in the early morning hours wimpering. I got right up and she told me she was in pain and she was scared because it hurt so much. She was referring to her throat. I called the nurse to get her some morphine. I then help her in my arms until she fell asleep. She had her ultrasound this morning and then went right back to sleep. She was so tired. I can tell that this has all be very hard on her little body. She actually slept until noon, when the nutritionist came in and explained to us that if we worked very hard to get Katlyn to eat we could possibly avoid a feeding tube because we were so close to Katlyn's throat starting to feel better. We woker her up and spent all day trying to motivate her to eat.At this point it is not so much about the quality of the food that she is eating, but the calories. She has lost some weight already and we don't want her to lose anymore. Based on what Katlyn ate by the afternoon, the nutritionish was satisified enough to hold off on the feeding tube. She said that she would reassess tomorrow. Katlyn has really worked very hard all day to avoid that feeding tube. I also have to mention that she needed less morphine today than yesterday, which hopefully is a sign that the pain is starting to ease a bit. Both her hemoglobins and platelets were high enough to avoid a transfusion today which was great. I should also mention that Katlyn also never vomited today, although she was nauseous quite a bit. This afternoon she was trying to eat her snack and Johnathan was running aroung to the stores trying to get some food that might interest her, and I was playing video games. Katlyn says to me that she is losing her hair. I looked at her and she was serious. She told me that when dad was playing video games with her, she noticed a big chunk of hair fall out. I explained to her that this was a common side effect to the chemotherapy she recieved. I did not tell her about it before because I did not want her to worry about it. I explained that we needed to kill some important cells in her body to make the transplant works and because of that the very fragile cells, like hair, die as well. I explained that this is a small thing to lose to save her life. She asked me if it would grow back and I said that it would. For the next little bit she joked about it and then she would cry. She was on a rollar coaster of emotions. I am trying my best to comfort her through this loss, but this all of this is so hard for her. She is devestated and I can tell. She tells me that life is unfair and I agree that sometimes it can be and that I am so so sorry she has to grow through all of this. She is my little hero. I have never met anyone braver. So she asked Johnthan and I if would could find her a wig of golden blond hair like her own so that she doesn't have to be seen with no hair. We honestly don't even know where to start with this. We want her to be as comfortable about all of this as possible, but I'm lost and honestly way to tired to look for answers tonight. I will do my best to serach tomorrow and if anyone has any experience with this please let me know. Please continue to pray for Katlyn, as these are tough days. Thanks you all for the support.