April 6

Madelyn was in good spirits all day and her energy was good.  She didn't even take a nap.  I am suspecting all the anti-histamines are making her a bit hyper.  She isn't necessarily hyper physically, but definitely mentally.  The Vincristine is making walking a little hard and she avoided all stairs today, but overall she was walking and moving well... 

Her brain was super active.  She was talking to me indepth and at great length on topics.  We worked a lot on letters and wrote a letter to her friend Alaina.  She joked around ( a lot), made treasure maps and a very cool, very detailed picture.  She cut a lot of paper.  She made an "exit" sign for the door, she picked out a pair of must have pink flower hair brarrets for her hair and Sleeping Beauty the movie.  She reminded me to get gas and to put my mask back on when I forgot. She helped me cook dinner and we had a girls movie night.  She smiled and laughed, sat on the edge of her seat and was gleeful watching her new princess movie.  

She still showed signs of her allergies to the PEG.  Not as much as yesterday, but a little - mainly this evening. She was a little shakey too.  I still feel concerned about the allergy.  So many times today I would just watch her and wish, like I have never wished for anything, that I could take this all away.  SHE IS ONLY FIVE GOD DAMN IT!!  She has to go through all this crap to get better.  It is so wrong.  I went in to check on her tonight and my first sight was a little bald patch on the top of her head.  It is of course just hair and it grows back, but that is not the point.  I watched every piece of that hair grow on her sweet little head and cancer is taking them away from her.  

You suck cancer.  You are unfair, rude, atrocious, corrupt, loathsome, a barbarian. You are lame.  I stick my tongue out at you cancer.

There.  I feel better.

Ok, as I mentioned yesterday, I went to a Leukemia and Lymphoma Society Team in Training practice on Saturday.  This group of people in Seattle are running in a marathon in Paris to raise money for Leukemia research.  We were all planning to go, but of course two days before Madelyn ended up inpatient at the hospital.  So just my Mom and I went and I made a speech for the runners.  (I had trouble getting through it without crying, but I did it).  As many of you know, Madelyn likes everything explained.  She doesn't like to be confused.  So my thought was to begin the speech explaining to her why we were there.  Well, I decided to not change it and passed out pictures of Madelyn as I spoke:

Madelyn,

These people here are running in a race – a long, long race – in order to raise money.  The money they raise by running will go to cancer research.  This is what that means: people study sickness like cancer and figure out ways to fix people.  These people are running to help make cancer medicines for you and other people with cancer.  BUT! running such a long, long, long, long way is hard.  What they need is inspiration to keep them going.  Inspiration can be many things - like pretty pictures, favorite songs or ice cream cones.  We’ve come here this morning to be like an ice cream cone.  You have cancer.  They are raising money for cancer.  Your smile is like an ice cream cone for them.  But don’t worry, I won’t let them lick you.

Now to all of you…

I’d like to tell you about my little noodle here.  She is a firecracker.  No, she is a pink firecracker.  I urge you to listen to the song Firecracker by Katy Perry while running; this is Madelyn’s song.  Madelyn is fun, she is spunky, she is out spoken, she is an awesome dancer, she is creative, she is tenacious, she loves princesses and horses, she is NOT afraid, she loves asparagus, she has a little sister named Sophia who thinks she is the bees-knees… and she is my little, baby girl.  Just two weeks ago she turned five years old. 

I REFUSE her being a martyr.  She is, and will only be, a soldier.  I will walk her down the isle at her wedding, I will see her graduate from college and I will be there, just like my mom was, when she has her babies.  THAT is the plan.  Cancer will not win this time.

But the real reason for that is because of people like you making it a priority.  Pediatric cancer was not a lifestyle that we ever expected to be a part of.  Our silver lining is that research and care for her specific type of Leukemia has a long, well documented, history.  Cancer research is the reason why that path to her cure is there.

Cancer has reorganized our priorities, it has taught us about unknown strength, and it has made us love even more deeply.  Remember those three things while you run: priorities, strength and love.  There are types of Leukemia and Lymphoma that do not have the research or the treatment history.  There are people and children out there loosing their battle.  They need our priority, our strength and our love.

Good luck to you in Paris.