Got EBB?

It takes ten times as long to put yourself back together as it does to fall apart – Suzanne Collins, The Hunger Games

I’m not gonna lie, life has been hard.  It’s been really really freakin’ hard.  There are days I’m not sure if I can make it completely through without having a full on nervous breakdown.  I may have had one today, a couple actually?  But with all that keeps my heart broken, the pieces are slowly starting to come back together.  Not the way they used to be, but back together in our new way.  Our new childhood cancer way.

We have fallen apart in the last year in every single way you can possibly imagine.  The autopilot has kept us going, but we are coming to a point where our brains are beginning to work again.  We are starting to see that reflection in the mirror that we haven’t seen in a year.   We are having to deal with feelings that have been put aside.  We are now trying to put pieces back together and sort out how to move on with our lives.  Maintenance has proved to be anything but easy for us.  My sweet girl is getting her hair back, but it bothers her more now than it ever has before.  We hear the whispers everywhere we go.  “Mommy, is that a boy or a girl?”  Mommy, why does her hair look like that?”  “You’re son is so polite.”  Why have I ignored the comments?  Why can I not speak, when I hear them?  It seems like a perfect opportunity to educate families about childhood cancer, right?  I just can’t do it, I can’t say it aloud.  I can’t say…”Well, little boy, HER name is Elizabeth and SHE has been fighting cancer.  And SHE lost all of her hair not once but twice due to the medicine that we hope will make it all go away.  It’s too hard to say out loud.  It’s too hard to think this is my baby that we are talking about.  I had to say it out loud this past Saturday at a Lymphoma and Leukemia team in training session.  Standing in a circle of about 50 people, I was introduced as Elizabeth’s mom.  Everywhere I looked were rainbow bracelets on the wrists of people that have never met her, but they were walking for her.  Talk about honored!  I was asked to speak briefly and as I began to open my mouth I felt the lump in my throat get bigger and bigger.  As I began to speak I could hardly catch my breath and go on.  Donnell our earth bound angel stepped in and again carried me through it.  What would I do without her?

So how’s Elizabeth doing?  Elizabeth is doing really well!  The good news is, she had a second successful IV this week!!!  This means the port can come out which will reduce the chance of blood infections.  The only down fall is that she will have more pokies.  It may be October by the time she is healed up and ready to swim, but by golly she’s going as soon as she can!  Elizabeth is still on daily chemotherapies at home.  We travel into the PCH clinic once every 28 days for chemo and start this vicious cycle over and over and over again.  Elizabeth rotates on four different chemotherapy drugs every 28 days.  Some of them she takes everyday, and others she takes once a week.  The beginning of the 28 days is usually more difficult for her.  This will last until next summer.  August 23rd is our magic number if all goes according to plan.  Unfortunately, I believe we are beginning to see the first of the side effects and we are only a year into it.  Some mornings are bippity, boppity better than others.  Some mornings Elizabeth wakes up ready for the day and off to the 2 1/2 hours of kindergarten she goes.  Other days she tremors through the morning, needing assistance to even hold a glass of milk and on the sofa she lays.  Our main concern is that Elizabeth has been struggling with what we believed to be a breathing issue, but we have recently come to realize that perhaps we are dealing with a neurological issue instead.  Although we have not physically lost our daughter, we do still grieve the life we have lost for her.   The cancer-free carefree lovely little life where she only had to worry about what outfit to put on Barbie, but instead she wants to make a video shaving Barbies head and show how Barbie has a port and methotrexate in a bag hanging on her IV pole.  Elizabeth has started voice lessons and is truly a natural according to her teacher.  Today was her first lesson and she can not wait to go back. Her legs are weak but she still tries to keep up with the other kids the best that she can.  We are working on building those muscles and making them strong again, however, not a day goes by that Elizabeth doesn’t ask for her own wheelchair.  Tonight Kate started ballet again.  Elizabeth had to dress in her leotard too, just to take her.

I never imagined that my children would see and know the pain they have come to know in the last year.  It has been a painful year.  A year we will never ever forget.  A year we conquered the biggest challenge life has thrown our way.   We are just trying to live life with a heart that aches all of the time.  I’m desperately trying to figure it all out in my own crazy kind of way.

Oh and P.S.

Cancer we are never ever ever getting back together!