Special Spaces, Strike out Cancer and other wonderful things

  

K with Maddox at Wrestling

Yesterday was clinic and the beginning of maintenance cycle 3 of steroids and Vincristine.  Already we see a big change in her personality and cannot wait for this pulse of chemo to be over.  It concludes with another dose of Vincristine next week.  I received 3 calls at work today from Kennedy about her hair falling out and Gene has experienced the wrath of hunger, thankfully it is just seven days.  Not sure what is up with the hair!

Just being normal

We have been involved in some wonderful programming this month.  Gary and Alex (Kennedy’s BFF’s parents) nominated Kennedy to be the “Patient of the Year” for the annual bowling Strike Out Cancer event.  She received a ginormous bowling belt.  When the belt was presented, I must admit it was quite surreal.  The young man who presented Kennedy with her trophy told K’s story. I was so sad.  I felt so bad for the little girl and family going through childhood cancer but that family was us, me, her.  I was amazed at how far I’ve removed all of us from the equation; we just pretend everything is okay so often, we really do believe it.  Maybe that is a good thing.

K with her Strike out Cancer Belt

Brave at clinic - no tears!

Our neighbor and friend, Laura, also recommended Kennedy to a girl friend who is the director of Chicago’s chapter of Special Spaces, an organization that redesigns bedrooms for critically ill children.  Kennedy will be the organization’s second room remodel.  Kennedy is ecstatic.  I received a call from Kelly Knox, the Chicago chapter’s director and within a week, the entire team came out to meet with Kennedy to get her feedback and ideas. It was an amazing experience.  Kennedy’s new room is scheduled to be complete on May 4, one day after her 6^th birthday.

Teary eyed moment for mom

K with Ella at clinic while we were away

I’ve been bad about blogging lately because everything has been normal.  We feel like we have a normal life.  So here is my update since my “Toxic Liver” post.  While on vacation, Kate, Ella and Grandma Linda took Kennedy to clinic and everything went well.  K’s liver counts were only 10 times more toxic than normal (down from 20).  One week later at clinic they were up 12 time the upper limit, still within acceptable range.  One month later, she is still trending at 10 times the upper limit of normal.  The doctor told us to expect liver toxicity, it is just a part of the chemo treatment and it is hard on her organs.

That’s all for now.  Praying that we will get through the next 6-days without pain or incident.  Fingers crossed.