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

2 Kids, a Taco, and Cancer: I Know Why the Caged Bird Sings

2 Kids, a Taco, and Cancer: I Know Why the Caged Bird Sings

I Know Why the Caged Bird Sings

For some reason, I have had this title in my head for the longest time.  Maya Angelou Poem.  I finally looked it up to read it in its entirety, and now I know why....let me share it with you:

I Know Why The Caged Bird Sings

The free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wings
in the orange sun rays
and dares to claim the sky.

But a bird that stalks
down his narrow cage
can seldom see through
his bars of rage
his wings are clipped and
his feet are tied
so he opens his throat to sing.

The caged bird sings
with fearful trill
of the things unknown
but longed for still
and is tune is heard
on the distant hillfor the caged bird
sings of freedom

The free bird thinks of another breeze
an the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn
and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied
so he opens his throat to sing

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom. 

Maya Angelou

Obviously when Maya Angelou wrote this in 1928, she was referring to the segregation among blacks/white. She was speaking for her own race and how they were still so caged in their existence regardless of the freedom they were supposed to be afforded.  But this poem seems to ring so true for me and my family lately as well.  

Sometimes in this world of childhood cancer, I feel as if we are living in a cage.  And literally, our house is our cage.  I remember when we first started this journey and were confined to our home much more than we are now.  We loathed it.  We loved our "home" but hated being stuck here for various reasons.  And now as we come to a close of our treatment in 5 months, we are finding ourselves in the opposite predicament.  We have become sort of like a dog who lives in a cage his entire life.  When you finally let him go, he will always return to his cage.  He has become accustom to such a life and its his comfort zone.  Same with the bird.  He wants out.  He sings about how much he wants out.  In reality, he is still a bird that even given freedom will never fly far from his cage.  

How ironic? right?  We have so longed for this day, and as it approaches, we are scared shitless.  Our anxiety has gone through the roof, and now all of the things we had put on the back burner during the beginning of treatment, the things that we could not let float into our minds or we would go crazy, are coming to surface.  We hate that we have to inject our daughter with poison to kill a beast, but we know that poison is doing its job.  Its destroyed the beast and keeping it at bay.  Now we come to a point where we are stopping all of this, and we don't know what is going to happen.  Of course we have trends, statistics, and doctors guesses on what may or may not happen, but when its your child, that means nothing.  We try not to let the fear of the R word get the best of us, but when you see it happening to your friends' children, you cannot escape that it could very well be a part of our reality.  Does Lucy's doctor think she is at high risk for relapsing?  No.  Do statistics show that her type of leukemia has a risk of relapsing? No.  But do I see other children with the exact same cancer having relapses.  Yes.  Heck, they still don't even know exactly what causes leukemia, let alone how to prevent or eradicate it totally.  And then lets talk about some of the side effects of chemo.  I remember on day 3 of diagnosis reading this big binder that was given to us regarding our treatment.  It talked about developmental delays, physical issues children have after chemo, the risk of developing other cancers from the chemo.  That's right.  Lucy has a high risk to develop other cancers because we have exposed her body to a chemical that causes and kills cancer.  And I am not saying any of these are small chances either.  30% is a big number.  3 out of every 10 children who become "cured" of leukemia (which is defined as 10 year event free life, meaning she does not relapse with the same leukemia she started with.  This does NOT refer to new cancers or new leukemia's that she could develop) will be diagnosed with a new cancer.  And I hate statistics because they are numbers, and my child is more than a number.  So let's put it this way. She has 20 kids in her class. Let's say all of those children had pre-b ALL.  6 of her friends will be diagnosed in the next 10 years with another form of cancer and have to undergo treatment, which then, yep you guessed it, increases their chances even more to get ANOTHER type of cancer and all before she's 20 years old.  

Now I know, I know. Live one day at a time.  You can't live your life in worry or else you would have a terrible life.  This is what I have been saying for the past 2 years to keep these horrible but true facts out of my mind.  I had to keep my eye on the prize. The problem at hand, and forget all the "what ifs".  Well, now is the time that the "what ifs" are more probable.  And that is what my biggest fear is.  Somebody pointed out to me that I hadn't written since January 22.  And its not for a lack of words (I never have that), it because I have had these fears for a while, and I didn't want to acknowledge them, as if I did, they would come true.  Irrational? Yes, but remember, I've been living in this cage for over 2 years now.  It has become our life and our comfort zone.  I haven't felt much like writing at all, and that is called depression.  Not wanting to do the things you love.  I have a book sitting here waiting for a second edit and then it can be reviewed and published and yet when I look at it, I have no desire to open it up.  And I LOVE writing.  Yes, friends, depression is rearing its ugly head again.  And don't be fooled, I still take anti-depressants and see my therapist.  Some things take longer to heal.  And I fear the end of treatment is going to take a little to get used to. 

There is another issue that has caused the depression to worsen. I have returned to the office "full time". I use that term loosely because I am finding how much vacation, personal time, or sick time I need to take is a really high amount.  Working full time, taking care of myself, my family and a cancer child is not an easy feat.  I see now why many parents elect to just have one stay home during treatment or work from home.  This has actually caused a decline in my health, Zach's health, and the kids are not immune to it.  We have lived in a tight cage together for 2 years. When one ventures out on their own, it is felt by all.  They have more room to move, but are finding that they are "missing" an important element to their space.  Plus time is more precious now.  And I choose to use my time differently than in our BC (before cancer) days.  I used to covet my vacation and personal time for me. Now I have nearly used it all up for the kids.  I have seen what is important and made drastic changes to how I react to that.  I used to worry that I wouldn't advance at work or people would look at me as unreliable when I needed to leave because my kids were ill or simply because I felt like I needed to have a "date" with them. Now I don't care.  I don't ask permission or try to explain, I just leave when I need to leave.  Oh, how priorities change.  For the better, but it is still change. 

For those of you who are unfamiliar, I have basically described what is known as PTSD.  Post Traumatic Stress Disorder.  Yes, my entire family is going through this except for Lucy.  Some people say "what that is what a war veteran experiences, not a cancer family".  Well folks, I am here to tell you first hand, that we are in a war.  A constant state of battle, fear, change, and trauma.  Our lives were changed in a matter of moments on December 26, 2010.  We have been fighting for our daughter's life since then.  We have had to learn to navigate situations in a split second.  We have seen many friends die.  Yes, we are at war.  We are coming to an end of one battle and are trying to prepare for a new one.  That door on our cage is about to open up. We are going to be expected to step outside and try to fly, but remember, our wings have been clipped.  We are fearful, cautious.  So yes, I know Why the Caged Bird sings, and I am trying to prepare for the day when we get what we have longed for this entire time.....Freedom.