Wednesday, April 22, 2009

It's my Party and I'll Cry if I want to!

Yesterday Julie mentioned she would like to throw a Sundae party for Lily. It was to be referred to as the "I love Lily" party. We had an extensive discussion of how Lily is a special case and it wasn't a good idea to have a "Good bye" party or "we're done" party since it would be hard to say when we will truly be "done". Lily had been looking forward to her party all morning, as it was planned for after lunch. Around lunch time, Lily fell asleep. Everyone on the ward knows- you don't wake a sleeping Lily. She finally woke up and was in her typical sunshiney mood(read in sarcastic tone). I don't know if I have mentioned that Lily will now sometimes wear clothes. Not a lot- but if we have a public outing to someplace other than the hospital- she will wear clothes. When she started wearing clothes again, she decided she didn't like tags. She would systematically bring me items of clothing to remove tags and then go throw them back in her room. The Dora robe remained tagged until last week. Then on one visit to the clinic- it had to go. Well she woke up this afternoon and needed the tag back on the robe. We made a makeshift tag from tape which momnetarily pacified the beast. She then wanted to ride in the stroller to the party. Mind you the party was in the playroom. Across the hall. Literally five steps away. Queen of Sheba comes to mind. She makes her "entrance" and proceeds to erupt into an emotional puddle of goo. Not in the good "you love me, you really love me" kinda way either. She wants mommy to help, no daddy, no mommy, don't look at her- I don't want ice cream, I want strawberries, not 6 strawberries, 3 strawberries- no put those 3 back in I want them now- She plops down on the floor and is pathetically sobbing. I, being confronted with such behavior daily- pick a seat across the room, snap a picture when her eyes are clamped shut- and wait. Moving in too soon only causes more screaming. Various staff members give it the good ol college try- much to the same result- Lily crying. She finally agrees to a sundae. She throws everything on it and says- I don't want this- I want to play a game, I don't want you to play - no don't leave I want you to play with me...... aaaaaaaaaaaaaaaaaaaaaaagggggggggggghhhhhhhhhhhh! Pediatric chemo is like the terrible 2's on crack.

Meanwhile her oncologist, psychologist, endocrinologist, and cardiologist are all watching her saying - I don't really think this is my area- what do YOU think? I don't think it's hormones- it's probably chemo- well we can't really tell until she's off of chemo- so let's wait and see...aaahhh the infamous let's wait and see. I LOVE it when the shrink looks at you shrugs and says- I really don't think there's anything I can do here.

I've found that the best thing to do is give her space and she cools down. Tough thing to do when she's the guest of honor. There is much chatter about how Lily is the only child they've seen who loves to be the center of attention -until she is the center of attention. She finally loosened up and enjoyed herself a bit and then we loaded her back up in the stroller and walked the 5 steps back to our room. A few minutes later, she wants to go for a walk. We end up pushing the stroller in case she gets tired- but she walks all the way outside to get some sunshine. We usually pick flowers, and today we found a big bird of paradise that doubled as a walking stick for much of the walk back to the room where it became a weapon and Bella defended herself by pulling it's "hair" out. That concluded our visit for the afternoon.

Phil and Lily made it home in time for dinner. Technically we are on "pass" and go back in first thing in the morning. I guess we wait and see.

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Lily Kay Monkey

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