Friday, February 13, 2009

A Day in the Life....

Time to go to Clinic. I have Barbie, Cinderella, Ken"Prince Ali", Pooh, 2 pillows, Nee nee, none of which are in my backpack- which I have also brought. We have just dropped Bella off to play with Aunty Carrie n Ola. Now we will drive around forever looking for a parking spot at Tripler. It's a big day- I have clothes on.

We finally park and make it into Clinic. We get to sneak in the back way so I'm not exposed to all the sick kids in the peds waiting room. I know my way around. Mom only lets me walk around when I have clothes on- although everyone here seems to like my birthday suit- they always giggle when they see me.

This is the waiting room for special kids like me. No one who has a cough or bad germs can play in here. I like to play soccer with this ball out in the hall. Sometimes Dr. Kratovil or one of the nurses play with me. Today I brought my tap shoes to show everyone.

We check in with Ms. Florence who is always glad to see me.

Ms. Simone finds my new favorite song on her phone "All the Single Ladies" by Beyonce- Mommy sings it "All the single Lilies" She's so silly. I show them how my tap shoes work.

We go into the treatment room which has a big fluffy chair for long treatments like chemo or transfusions. I've logged a lot of time here. There's a scary chair on the other side of the room- where we do the pokes. I'm a big girl now and sit on mom's lap in the scary chair. I only scream a little while now- we're working on that.

When we're done, Ms. Florence takes my access needle out- sometimes that's as bad as getting it put in- it hurts when the tape comes off.

This is my favorite part- BEADS! I know which ones I get now- the black and white are the poke beads, they are VERY important to me. I get a blue for the clinic visit and silver for accessing my port- it counts as a dressing change because of the sticky tape!

On our way out, we stop by the vendor and I get a treat. Sometimes I pick donuts or candy- today I want a rice krispie treat. When I feel good, I pay by myself. Sometimes I get coinies back!

We usually run into someone we know. Everyone seems to remember my name- I usually can't remember theirs. Mama tries but her remembery isn't very good right now she says. Today we saw Ms. Julie! All that entertaining made me tired, it's time to go.


  1. I love to hear your laugh :) Thank you for the tour, and thank Lily for showing us and being so brave about it.

  2. Lily - You are such a young lady! I love your tap shoes, and All the Single Ladies, too. Makes my heart sing and break at the same time, I love you so much. Love to you - Grandma

  3. Lily, thank you for taking me through your day. How exhausting! I like rice krispie treats too! You are a very good dancer! Keep your smile on sweet girl! Your friend, Heidi


Lily Kay Monkey

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