WALL-E

Today Aly grabbed her chest and said - - "ouch my wall-e hurts".  A stranger standing next to us in line looked at me with such a confused look.  I didn't really feel like explaining it her, but that almost changed when she began to roll her eyes because Aly was beginning to act out, whine then started to cry.  The real me wanted to lost it on her and say - - would you still look at her like that if you knew she had leukemia?  If you knew she had cancer would you still look at me with such judgement like I am a bad mom because my 3 year old isn't behaving a like a perfect child in the check out?  I decided to bite my tongue because I feel I would have made a scene much larger than I wanted, and I didn't want to draw that kind of attention to myself or Aly.  But there was a little part of me that wanted her to understand that everyone has a story before she goes begins to judge us based on Aly's behaviour.

Anyway, as some of you reading this might know cancer patients that receive regular chemotherapy are given a port that allows easy access to obtain blood and give chemo, transfustions etc ( see below).  It is implanted below the skin and ties directly into a vein.

Well each of the kids at the cancer clinic, and those we met on the pediatrics floor all have names for their ports and for the IV unit that gives them fluids, drugs etc.  A common name that kids use is George - - well not Aly.  Her port is called Wall-E and she also calls her IV pole Wall-E too.  It's amazing how she identifies with it and that naming it seems to bring her some comfort.  As soon as we get to clinic each week Aly always asks for Wall-E and will even say hi to the IV pole when the nurse brings it in.  So back to the first line of this blog today .... when she said her Wall-E hurt, she was referring to her port.  Sometimes she will knock it, or want me to rub it ( which to be honest gives me the willies).  Now I know Aly LOVES the movie Wall-E, but it's funny how much she loves it.  Not only are her port and IV pole called Wall-E, whenever we go to clinic she wants to watch the movie.  Even the nurses and child-life specialists know that if she is sedated, they need to have the portable DVD player in her room with Wall-E playing when she wakes up.  Now if you have never seen this movie you must go out and purchase it - it is truly awesome.  What I find interesting is that there is not one word spoken for the first half of the movie, and you would think that a 3 year old would be bored, but Aly seems to connect with the Wall-E character and can feel the emotions that he is going through.
Aly is still not used to having her Port accessed at clinic with the gripper ( needle that is inserted into the port) so the Child life team have dolls that each patient can have and they learn about the process through the doll.  At first I didn't think that Aly would buy into it but she loves it.  She has a doll at clinic and another that they have given her to play with at home because she is so anxious about the whole process we are trying to do our best to help her understand. ( below is a gripper).  Well when it came to naming her doll it was no surprise that she called it Eva.  If you haven't seen the movie Wall-E, Eva is the robot that comes down to earth that Wall-E falls in love with.  So now when Wall-E is lonely Aly says that Eva will make him happy ( and hopefully make her happy).

Here is a picture of Aly relaxing on her bed after receiving treatment.  If you look closely on her left chest you will see the gripper attached to her port.

...and here is Wall-E.  This was taken while she was admitted.  Aly took the photo and it was funny because she asked if I would stand next to Wall-E and get our picture taken.