Well....I've been exhausted. I can barely muster the energy at night to type on her blog. Honestly, I wish I could say how I really feel about this disease and fighting cancer and dealing with chemotherapy but I think it would be too much for some people to hear. This sucks. We try as hard as we can to keep Haven happy and not depressed but we know she is. How could she not be? She has never had a normal child life. More than 75% of her life has been in and out of hospitals and getting medical treatments, surgeries, crazy medications.
I was talking to another mom going through the same thing and getting the same treatment. She was telling me how exhausted she is and that she just can't focus on anything else. She has no idea what is going on in the real world. We talked for a long time while doing laundry. Her son is 6 years old and has Neuroblastoma Cancer so we had lots to talk about. I assumed that may be she'd been searching as long as I had as to what was wrong with her child. I was giving her details about Haven and how long we have been doing this and working to find out what is wrong with her. She laughed at me and I smiled and she said "I can't believe you've been doing this for almost 4 years - we've only been doing it for 1 year". She went on to say she didn't know if she could do it that long and how insane we must be.
It was just a good conversation and now we're in the same BMT housing and I see her a lot. I've met her son and talked to him. Just the cutest sweetest boy. She wanted to get the kids together to blow bubbles or play......but Haven is on isolation until this virus is gone. Right now I just don't see an end to this virus. I believe Haven went to the bathroom 15 times today. Needless to say she is in pain and now her stomach is constantly hurting. I can't fix it and I don't know what to do. There is no medication to get rid of it.
So, I have lots to catch up on and will post a couple posts to get it all up there. I have added new pictures to her flickr site you can check out.