Katlyn has not been able to go outside this weekend. We were hoping that she would because the weekends are the best time to take her outside. This place is totally deserted and not a whole lot is going on. However Katlyn's neautrophils have remained above 500, so she hasn't needed any GCSF. However her lympocytes are just below 100, and that is what has prevented her from leaving her room. It just breaks my heart. She enjoys herself so much outdoors. Katlyn enjoys having a little freedom and exploring so many new things. In this room though, she seems a little down because everytime she talks about going outside we tell her she can't.
It's so hard. I know that the situation could be a million times worse, but something so simple as going outside. I mean, really? I just want Katlyn to be able to live a normal life so badly. Oh I dream of the day.
Actually I think I'm a little bummed out today. There is a possibility that we could go back to Canada, but we don't even dare let ourselves get even a tiny bit excited. We're so scared if we do, we're just setting ourselves up to be disappointed. It is so fustrating.
Besides that I have this horrible feeling like we're all alone. It almost feels as though people have gotten used to the idea of Katlyn being hospitalized. When Katlyn was first diagnosed, we did have an overwhelming feeling of support from every direction. So many people were helping us. Now though, things are different. I often wonder if maybe people have almost forgotten. Katlyn is still a sick little girl. We have been going at this for more than a year, and God only knows how much longer. It seems like forever. The need for help and support is greater now than it has ever been, but I have this feeling of helplessness. I'm not really sure what to do.
I can remember when my best friend Aleisha was killed in a car accident and how badly that hurt. We knew eachother since high school and were extremly close. We ended up employed at the same place. Anyway when Aleisha passed away and I returned to work, her desk was full of cards and flowers and her computer was turned around. Noone bothered even trying to sit there for the longest time. But I can remember the day that someone did. I can remember holding my breath, and as they sat down, wanting to scream at them, and then I just wanted to cry and never stop. The feeling that I have is very similar to that. It feels as though people have moved on with their busy lives and have adjusted to us not being around. They've moved on in some sense.
It's hard to think ahead, about what we are going to do and what's going to happen. Johnathan has lost his job so he will have to find a new one when we get back. I might even need to work as well. We'll have to find a new place to live, move all of our belonings from Centreville to Moncton, which is about 5 hours a way, and the list oges on. It just all seems very overwhelming.
Sometimes it seems as though we are living with a black cloud over our heads. It will be very nice when things start taking a turn in the right direction. It's just right now there's so much uncertainty in all aspects of our lives.
I just love my girl and want everything to be okay.