Tuesday, January 27, 2009

Happy Lily-

Doctors from all over the hospital stopped by today because a rumor got out. It was rumored that Lily was in a good mood and just about every physician in our treatment regime came up to observe her behavior personally. She smiled and giggled and rarely yelled. It was a glimpse of our goofy little monkey. She even ate cheese and crackers and skittles. Since she only feeds us candies of our favorite color and it's too late for me to change my favorite color to red- I finally wised up and got her tropical skittles where the green is papaya or kiwi or something much more palatable than lime.

We have started her on another steroid. Flori something or other. After polite, careful, often repetitive suggestion by my mother that they need to address her adrenal insufficiency more closely- and perhaps my exhausted demands in clinic Friday that they have to DO something-they are. She has been low on salts and potassium and phosphorous- all somehow interrelated to raging diarrhea and adrenal insufficiency. She still doesn't seem to be tolerating the tube feedings without incident yet. Last night she sat up from a deep sleep and proceeded to vomit straight pediasure- smelled the same as it goes in- which isn't a compliment, it smells like vanilla formula- which- I guess it is if you think about. But then after we turned the feed off, no complaints. We just have to find the right.......

Dr. E even came up to see her and laughed at Lily, who at the time was playing a video game in the playroom- spread eagle with nothing but a pull up under her robe which was wide open. Dr. E suggested a wife beater shirt to make the scene complete. She also said pretty much that chemo pisses off the intestines and we couldn't expect her system to work right. Just keep swimmin just keep swimmin......keep diluting the formula and extending the feeds to get her nutrition.

The cancer shrink also came in since she had witnessed satan's spawn on Friday, bringing her fellow head shrinker in tow-I thought she wanted to see the "other" personality. We were about a half an hour into the "visit" when it occurred to me- the co worker's presence was to distract Lily- I was being "shrunk." Ah well, it didn't hurt. I realized it when she asked me if I felt guilty for Lily's illness. Of course- but mostly I blame Phil, if he wasn't so damn irresistible we wouldn't be in this mess. Coulda just left me as a spinster, but instead..awakened the reproductive machine within. Darn him. But everything happens for a reason, and this is no different. Perhaps Lily will go on to discover a cure for cancer, perhaps one of your children will for her sake, hard to say- but she is meant to be here and I will totally take credit for that.

At one point today I was being disowned and a new phrase popped into my head and out my mouth. "you're not my mommy anymore" she was screeching at me. " ah well, it was a nice run kiddo- I'm glad I could be your mommy for a little while- it was an honor" - she started giggling hysterically- " oh you ARE my mommy again for a BIG while".


  1. You are so blessed to have each other! Yea for Happy Lily!

  2. What a wonderful response you had! Lily knows who loves Lily for a BIG while. She is so lucky to have such a good mom. I am so lucky to have you all in my life. I know I have said this before but Lily's little smile and personality reminds me so much of your dad. Good things do live on. With that said, you have always have been my BIG sunshine. Love, Mom (Grandma)


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)