Three Easters and Counting.....

As I was doing the normal assembly of the Easter baskets for the kids and posting it on Lucy's page, it occurred to me, this is our 3rd Easter we are sharing with the world.  That just struck me as being an awfully long time.  Yes, we live this world of cancer. Yes, we are aware of how long this treatment plan is.  Yes, we sometimes feel as if we are stuck in time its so long.  It wasn't until I realized it had been 3 full Easters how long LONG really is!  And we aren't done!  Not by a long shot.  Yes, July 17, 2013 is her last IV chemo.  Yes, that is the day we can celebrate no mo chemo, but we have a lifetime ahead of us still.  We will have to get her immune system back up to par, we will have to go for monthly checks, then bi-annually, then annually for the REST of time.  We will still have sleepless nights before we get counts. We will always have this flutter in the back of our mind that cancer is lurking and worry its going to work its way back into my beautiful child's body.  A lifetime of worry doesn't sound like an end to me.
I know, I know...we are almost done with active treatment, its a holiday, why such the bum mood? The R word.  Two people whom we are good friends with have found out their cancer is back.  And these are from cancers that have the least amount of history of returning. That isn't very reassuring.  It doesn't help that a beautiful girl from Australia who was battling DIPG passed away this week and her parents posted a video of "Miette Leaving".  It was heart wrenching, and I watched it.  I don't know why, but I felt like I was obligated.  I felt I owed it to this little girl even though I had never met her.  I felt as if I owed it to her parents.  The reality? I owed it to myself.  I have never once since day one thought we were going to lose Lucy.  Denial. Its a great friend.  Yes, my counselor helped me to realize that its a possibility, which unnerved me, but the truth is....it was just a possibility.  Yes, we have had plenty of our friends' children die from cancer.  We never attended a funeral. So while I mourned, and I cried, it was still a million miles away, even if it was in the same time.  The video....the video actually was thousands of miles away, and yet, I felt as if I was in the same room with Miette and her family at the moment they were transporting her lifeless body to the hearse.  It was no longer a possibility for this family. It was no longer a time frame of waiting.  It was real.  It was very raw and very real.
No parent should have to sit in bed with their dead child and cuddle their body for the last time.  No sibling should have to kiss their dead sister and fix her hair prior to being removed from the hoe. No parent should ever have to carry their lifeless child to the hearse. No parents should have to discuss how best to pick her up since she was so heavy.  No parent should have to see the bruise on her back because a pool of blood that formed on her back because death had set in. No parent should have to watch their child being put in a hearse and zipped in a body bag.  No parent should have to give that last kiss on the forehead before the bag is finally zipped up.  No....No parent should have to endure the death of a child that was harsh, unforgiving, painful, and so very real.  No possibility there.  DIPG is a death sentence. There is no cure, there is no treatment.  And yet, children have been dying from DIPG since St Jude opened its doors 51 years ago.  And since that time there is not one new treatment, not one new drug, at least not any that are worth treating the children inflicted with this disease.  Why is that? Money.  Funding.  Politics. And priorities.  Sad but true.
There is some backlash from Miette's parents posting the video, along with some hate emails and public nastiness, but the truth is, I am actually in awe of this family.  I know a lot of people follow many families with children that have cancer, and you have to admit, its the good, the bad, and yes the ugly....but the ugly is never seen through the eyes of a first person view.  Miette's mother said from the beginning she was going to share her story...all of it.  No rose colored glasses.  And she did.  Even the end.  Her words were "people do something when they are passionate about it, and to get passionate people need to see results".  Powerful! What a horrible result she had to share with the world.  She shared her dead baby being carried out by her father to the hearse.  She shared her families emotions during this time, and did so at the same time they were all feeling it.  I will tell you this, I am forever changed from watching that video.  It threw me in to a horrible panic attack, and sleepless nights going in and hugging Lucy a little bit tighter.  But I can't ignore it, and I feel I need to share it.
At first I was conflicted on if it would even serve a purpose to watch death happen to a little girl.  Then I was conflicted on whether or not to share it as it is absolutely gut wrenching and steals your soul in ways that you will never be able to get back.  Then I realized, you have a choice. You can choose to watch it or not.  But I guarantee you this, your life will be forever changed by this little girl.  We need awareness, we need funding, and we need a cure.  Childhood cancer is very different from adult cancer.  Adult cancer has made strides due to awareness and funding.  All I ask is that we give our children the same amount of coverage. They have earned it.  Their parents have earned it.  Miette has earned it.  Lucy has earned it.  Three Easters you have been reading our story for one reason: Cancer.  THREE!!!! When will it be enough? When will it be too much?
Please read the warnings on this video below prior to watching. You can click on the link and it will open in a separate window.  I chose to watch without sound. Do not view in front of your children. And its a choice you have, so please don't bother to comment if you don't like it.  Just don't watch it.  But I can tell you if you do watch it, your life will never be the same. EVER.
Much Love ~ Shawna
Miette's Journey