Tis the Season

The carolers are out in full force at the hospital. Julie and I had just been talking the day before about how the strangest things can set you off emotionally. Apparently for me it's Jingle Bells sung by teenage carolers on the peds ward. I think 2 nights of no sleep contributed to my sob fest, but it's hard to say. Fortunately 2 nurses collected me into the office and Julie distracted Lily while I exorcised the demons. yesterday, there was a Christmas Party that Santa was attending. Phil took Lily to see Santa, I'm glad I wasn't there. I'm having a tough time dealing with the jolliness of the season and how people's demeanor changes when they see her. It's like being the world's biggest buzzkill. Nothing says Christmas like a look of total sadness followed by a forced smile- hmm, actually that covers most work parties, never mind.

This hospitalization was due to Lily having yet another virus plus a bad reaction to the antiviral she was on, which decreased her kidney function. The virus caused the fever and new rash. She got some extra hydration and her fever has been gone for 24 hours. All of her Blood Counts are up and she's not neutrapenic, although she is treated as if she were for extra precuations. Which means cycle 2 starts tomorrow. 1 down, 7 to go. She only has a thin layer of peach fuzz on her head and her eyes look perpetually sick. But every now and then you get a precious Lily smile and then I remember why we are doing all this.

Lily was "discharged" yesterday and came home at dinner time. Stewart and Jackie were on hand helping me around the house. The plan was for them to help with the kids so I could get to the hospital, but I seem to be catching the virus the girls had and thought it best to stay home. I think Phil's words were "I've GOT it here- stay home and rest". So Phillip and Kiera went off to play with friends and I utilized Stewart's height to retrieve Christmas decorations and Jackie helped me get the tree ready. Considering we've spent 11 of the last 21 days at the hospital- I'm not sure we'll get another chance. On the postitive side, not only do I have an amazing group of friends - my mom does as well. She was scheduled to work Christmas, but her Co-workers at St. Anthony's North all arranged their shifts to cover for her so she could be with us. I am so happy she is going to be here to help make the season magical for the kids despite our crazy circumstances. Thank you to everyone who had a part in this- that is truly the most wonderful gift.

We go back in tonight for hydration. There was a question of whether or not we could do the cisplatin because of her decreased kidney function, but it is back up and we are a go for torture session 2. I questioned the sanity of packing up and coming home only to turn around and go back- but everyone had a good night's sleep so it was worth it. It also helps that they let us leave our stuff in the room. So really it was more of an overnight pass than discharge. Lily is still sleeping. I went to bed at 8, so I've been up. Kiera found another package of ornaments somewhere and is putting them on the tree. I think the plan for today is for Phil to catch up on yardwork and if everyone has energy- to go see the zoo lites and then check in at hotel Tripler.