I hate waiting.

 Today marks the first day of what was supposed to be the start of phase 3 of Lily's treatment. Phase 3  for Lily is going in to MSTI and getting 2 different forms of chemo through her port every 10 days for 60 days. In order to start phase 3 her blood counts have to be at a certain level. (Her neutrophils). Last week her neutrophils were around 1475. If she goes under 500 they consider her neutropenic and she is very prone to getting an infection. That would most likely mean a hospital visit if she got sick. They wont start the chemo in phase 3 unless her counts are 750 or higher. Well yesterday her counts were 450. She dropped like 1000 in one week! Ugh. This is a huge disappointment for me. Having to postpone treatment for me is like  holding up a big sign that says, 'Hey everyone, my daughter has cancer but I'm not doing anything about it at the moment. Take that world!' I've realized that this whole waiting game just gives me major anxiety. I don't AT ALL like just sitting around. I need to feel proactive to keep my sanity. I know that the Dr's are experienced and do this because its what is best for Lily and to be fair they did warn me several times that this could happen. But, I just didn't really prepare myself to get sent home because she had been doing so well!

Maybe I jinxed her because for the last couple weeks I have been thinking that we really got this cancer thing. She has almost gotten back to herself physically and in her personality. It just kind of puts things back into perspective for me. Lily has been doing so well, she hasn't been sick, she still has lots of hair, and she has been mostly happy. This last week though I did start to notice a small difference in her behavior. She seemed more tired and upset than usual. I guess that is what is so scary about this disease, with all the meds, and just the disease its self, things can switch rapidly with not much warning.

I guess the blessing with this whole thing is Lily doesn't know any different. She knows shes sick and she knows she is special, but she doesn't realize how sick and she doesn't realize how rare this is for kids. This is her normal, her reality. And can I just say how amazing Children's MSTI is! She goes to her appointments and she gets to do crafts, play with toys, and gets a different prize every time that she gets her port accessed. They give her a golden coin that she puts in what looks like a quarter candy machine and she spins the nob and gets a surprise toy. She totally loves it there, and that is amazing.

I guess this week my goal is just going to focus on keeping Lily away from germs, and forcing time to let her rest and relax. Hopefully then her body can rejuvenate and be ready next week. I guess the best thing for Lily is for her and I to go to a spa and for us to get a massage and pedicures. Its for Lily's health. It just must be done ;).