Dear Jack

I remember the day you were born as if it were yesterday. The memories of meeting you for the first time are forever etched in my mind. The way you looked, the way you sounded, and how you felt when I held you close. You were and still are my baby boy even if you are too old to give momma kisses. 

8 years old!!!! Wow! You've been through a lot the past few years, as the rest of us, but I want you know that I recognize the sacrifices you have made for our family and in your childhood. While Lucy was the one taking the chemo, cancer has affected us all and taken a lot away from our family. I'm proud of how you have handled it over the years, but today I am the most proud. 

You are celebrating your birthday at St. Jude in Memphis while your sister undergoes surgery, treatments for the entire day. And all you said to that was "we will make the best of it". You didn't ask for a party, and you only asked for one gift.  That my son is tell tale sign of how big your heart is. You've always had a big heart when it comes to your sister. From the day we brought her home and her shares your best toys with her, to when she was so sick and you laid with her trying to comfort her. I am proud of the young man you are starting to become. Much sooner than you need to be. 

Today doesn't just mark an important day for Lucy and her no mo chemo, or for you and your birthday. Today marks an important day for our entire family. Cancer has effected each and every one of us differently. It has stolen things, and yet it has given us a pretty solid framework in which we have decided to live our lives. No regrets, go for the gold, and laugh as much as you possibly can. So I want you to always remember that this day is YOUR day as much as it is all of our day. 

Happy birthday, buddy. I love you and admire you very much. And I love that you can make me laugh just by laughing yourself. And thank you for sharing your day with the family in a place we have called our second home for the past 2.5 years and not a complaint or worry from you. 

Love, mommy  (you may not give me kisses anymore but you still call me mommy)

Ask me why I am bald

I have been sitting here for days trying to figure out what exactly is going on in my mind after the 46 momma's Shave for the Brave.  There are definitely a lot of emotions.  I have noticed I have been a lot more easily agitated, I cry at the drop of a hat, I am a little bit more defensive than normal, and yet I have moments of tranquility.  Sometimes I wonder if I am truly certifiable loony bin material.  Truth be told, I don't know how to describe what I just went through.  I know how it felt to me and what it meant to me, but trying to find words that will help those who were not a part of the event "understand" or even just get a glimpse into that weekend is not easy, words escape me and that is not normal.  I am never one to be a loss for words.
Let me digress, maybe that will help.  I have a virtual support group of mommas that I belong to on FaceBook.  Some of us have known each other since Lucys diagnosis, others for a year or better.  We have a safe place where we talk about everything.  We talk about cancer, we talk about life, we talk about kids, some of us talk about our dogs.  And yes, we talk about death, our fears, our dreams. I am so thankful for this group, as I don't know if I would have made it mentally through a lot of what we have gone through without them.  I have friends at home that still stand by me, but its hard for me to talk about Lucy sometimes, and not that I don't trust them with what I have to say, but rather I want somebody who understands and is going through what I am to listen to me.  I want to know my feelings are normal, and that other women are thinking some of the same things I am.  Basically, I want it to be verified that I am not Crazy! And this group of virtual women have been that for me.  They have been my sounding board and release for the better part of Lucy's treatment.
Fast forward to the shave.  This was an opportunity for some of us from the group to get together and finally meet.  There are 125 women from all over the world in this group.  There had been ladies who met before, but this would be the largest size of the group to get together. There were exactly 8 of us who were able to make it to San Antonio for this event, 5 of us shaving for the first time and 2 other in the group who had already been through a similar experience.  I was so excited to meet these ladies and nervous!
As I met each different person, it was just as if I were talking to them online, except I got to touch them and hug them.  I also learned a lot more about each one of these ladies than I had before.  We have always said we wonder if life was different, and we didn't meet due to cancer, would we be friends?  And I still wonder that.  It would be a shame because I have never met a group of ladies where I felt so connected.  I had so much fun with these ladies.  Talking about our kids, cancer, and laughing.  I have to say I have not laughed that hard in a very long time.  I needed that therapy.  I needed that therapy more than any drug or counselor could give me.
And we were only a small representative of the ladies there.  I got to meet some incredible moms, and I think had our group not been a "team", I would have spent a lot more time with those other mommas, but I'm kind of glad I had people I knew to help support me during the shave, it was much more intimate. I wasn't as nervous meeting the other women since I had my group of girls with me.  Women in general are very protective. They are protective of their family, their friends, and their ideals and beliefs.  When a bunch of women get a group together, there are bound to be strong personalities that do not go well together.  It reminds me all to much of Jr. High, where you saw a lot of your first cliques start.  I was scared of going alone to this event for that very reason! As women, sometimes instead of celebrating each other, we tend to take our stand and mark our territory.
As I said, I was thankful for the ladies I had there with me that I knew due to my fear of being "left out", but if those ladies had not come, I realize now I would never have felt left out.  It was amazing showcase of solidarity and openness.  Each lady opened their hearts and arms to each other.  I have never seen that before, and I thought it was the most amazing thing ever.  It was togetherness and a connection, and an amazing display of encouragement and support.
Shave day was chaos.  There was some unexpected rain, which resulted in a change of venue, but the group of ladies who put this together did an amazing job of making the changes seamless.  We were in a banquet room at the Holiday Inn, and we all had our bags of things, and our "gear" for the shave such as pictures of our loved ones, tshirts, bracelets, hats, etc.  We were helping each other get ready as if we were about to compete in some sort of sport.  I remember sitting on the floor with my backpack and just looking around and taking it all in.  I was amazed at all the things going on around me.  The children playing together, the mom's hugging and helping to calm each others nerves, the dads (husbands) standing by and either watching the kids or nervously awaiting for their wife to be the next shavee.  It never occurred to me in those moments that I was about to lose all my hair, which we know as women is a part of our personality.  It hit me for the first time as I looked around, I was not nervous, scared, or even sad.  I was excited, and I was calm.
As we walked up to our chairs (they were all in a row), and sat down before our designated barber, it was like we were all walking up to receive gold medals.  Then the rest of the room disappeared.  As soon as the clippers were on my head, and I could hear "Lucy in the Sky with Diamonds" playing in the background, I closed my eyes. And I cried.  I felt the buzz of the clippers and the hair falling to the ground.  And I cried.  I cried because it was the most amazing feeling I had ever experienced, and I was happy and sad all in the same moment.  I cried for what my daughter has had to endure.  I cried for what our family has had to suffer through.  I cried for the people I have met along this journey who have lost their children.  I cried because I was a part of this wonderful movement and was sharing that moment with some of the best people in my life. I cried because my hair was gone, and not for vain reasons but for what it represented.  I looked in the mirror when it was done, and thought "wow, this looks FABULOUS".
After we walked off the "stage" after the shave, I started to hear the noises again and see the room.  It was all business as usual again.  And it was crazy chaos.  Pictures needed to be taken, hair needed to be "cleaned up", and there was still several groups of mommas to shave yet.  I had that "moment" of silence and tranquility and the whole room was silent and disappeared, and I was thankful for that.
When the shave was over, it was amazing to walk around with all these other mommas and have no hair and feel the pride and feed off one another.  It was the world vs us.  We were the "normal" ones.  Then I had to come home.  I had to return to my normal life after experiencing this amazing, indescribable, event.
I was a little nervous and scared to come home.  I didn't have other bald mommas around me anymore. I was the odd man out this time.  I noticed people were staring now, whereas before, I had no clue, or maybe I did but I didn't care.  And for a moment, I thought, this is how Lucy felt when she came home from Memphis that first time.  She was no longer in an environment where everybody was just like her.  She was different.  She was sick. How awful that must have been for her. THIS is exactly why I shaved.  I shaved for her, her friends, the children to come that will be diagnosed, and for a cure.  Ask me why I'm bald.  I would love to tell you.

Dear much older Lucy

Dear Lucy:
I remember the day you were born like it was yesterday. Daddy and I woke up early for your planned arrival by 3 am. We went to the hospital and were anxiously awaiting your arrival. When you finally came, you did so with a voracious attitude. Screaming before you were even fully delivered. I hadn't even seen you yet and the first thing the doctor said was "look at all that HAIR". It was dark, thick, and stuck straight up! The nurses brought you in to me after every test, clean up, and break and you had a Mohawk. I thought "how clever they are fixing her hair already". I was wrong. Your hair would prove to be as strong willed as you and stuck straight up for the months to come regardless of what we did.
As you grew, so did your hair. It was crazy curly, and thick. I loved walking into your room each morning to see how it had shaped through the night.
Soon you were walking, and your hair grew faster than you did! Everybody always remarked how you were a little girl with grown up hair. You had gotten a distinct part by that time, and as wild as your personality, your hair did what it wanted regardless of our efforts to shape and mold it.
Then, your hair just became too much for your 3 year old body. It flowed all the way down to the top of your bottom, and you were constantly getting food, dirt, leaves and whatever was around you caught in your hair. We knew it was time for that first cut. Daddy stood his ground against messing with your hair until he could finally no longer get a brush through it without crumbs of dinner falling out.
So it was decided, before your third birthday, you were going to get a big girl haircut. You were so excited to sit in that big girl chair. You stood so still for Rosie. What appeared before me when she was done was way more than I could have ever imagined. You had a shoulder link bob that was the thickest and most beautiful thing I had ever seen. I cried a little. As in the past, your hair continued to mirror your personality. You were such a big girl and ready to do "3" year old things.
2 weeks later, I remember thinking how cruel the world was. I was told the worst news ever. You had cancer. At first, I thought how shallow of me to cry at the thought of you losing all of that beautiful hair. Of course, I grieved for your lost childhood and mourned what you were about to lose, but your hair stuck in my mind always.
That first morning when you woke up and were crying that your hair was in your mouth, and I couldn't see your pillow case because it was covered in that beautiful brown hair. I cried. After several more days of that, we prepared you that all of your hair was going to fall out. We asked if you just wanted to get it over with. You, surprisingly were so brave and said "yes". As if it were casually choosing an item off of a menu to order.
In our room at the Ronald McDonald House, your dad buzzed off all of that thick beautiful hair while I watched and choked back tears. I didn't want you to see me cry. You were scared at first. And we told you, "it's just hair honey, it will grow back, we promise" and you told us you knew that and that wasnt why you were scared. you said the noise of the clippers were scaring you. we put on your headphones, and the three of us sang Beatles songs until the last lock fell. When it was over, you turned around and looked in the mirror and were so proud!! You said "I look like all the other kids now". You couldn't wait to show all your doctors, nurses, and friends.
Standing in that room, for the first time, I saw something I had never seen before. Not really. I saw your beautiful brown eyes. What strength and courage they had in them. I saw an old soul. A beautiful old soul.
Why did I decide to tell you this story? Because one day, when you are older and look back on the day that mommy shaved her head and looked so silly, I want you to know why I did it.
I knew it the day you were born. I knew it the day we shaved your head, and I know it now as I prepare to shave my own head in your honor. I was wrong. I was so wrong! It's not "just" hair. It was YOUR hair and your health. It was your personality. It was, after all, your nickname. Losing your hair meant you were sick. It meant your body was at battle. It meant my little girl wasn't going to have a life of most other 3 year olds.
That day when we shaved your head, you didn't have a choice. I do. I am choosing to shave my head for that last lock of yours that fell to the ground. I am choosing to shave my head for the look I saw in your eyes after it was gone. For your determination, your strength, and for your fight.
I will no longer tell anybody "it's just hair" because it's not. It's the mark of a warrior. It's just one wound you suffered during your battle. And the same is true for anybody that has this journey.
I am shaving my head so people will notice I'm different, yet well. And I will tell them all about you. I will tell them all about your friends. I promise to never turn down an opportunity to tell your story and spread awareness for the war you fought and are still fighting. I promise to all of your friends who courageously lost their battle to always talk about the day I shaved my head. I will force people to look at me, and ask me why I'm bald. I will tell them it's my choice to be bald because my daughter didn't get the same opportunity to make this choice.
I hope you now understand. I hope you read this and look back at the day I came home with no hair and remember how you laughed at silly mommy. I hope you know that I love you and would go to the moon and back for you if I needed to. This, my beautiful daughter with your deep dark soulful eyes and thick dark brown hair, is a small way for me to tell you how much I love you and admire you even as a 3 year old.
Love~
Mommy

I married THE hotdog man

I know, I know...its has literally been 2 months since I have blogged, but I promise its for good reason.  I have my 2nd book wrapped up and almost ready to be released, and I have my 3rd book started.  And I have decided to make them blog based, with a little extra writings.  Things I journal privately and never have shared with anyone......not yet anyhow.
I do have something to share, I am too excited to keep it to myself!  Zach and I have STOPPED working for the "man".  We have decided that life is too short to be miserable in what you do on a day to day bases.  Like the movie "Office Space", we lived that every day.  There were tons of TPS reports (obviously the name changed every couple of years), there was office politics, there were people who sat in cubes and did absolutely nothing and then those who worked their asses off and got zero recognition.  There was a lot of dirty things that happened, and horrible people we worked with.  Zach had an awesome boss up until the last year when changes were made.  His new boss had the nerve to ask him if Lucy was even sick.  His new boss never communicated to his co-workers, so he had his cube stripped one day and people decide NOT to talk to him EVER based on the facts they had (or lack thereof).
I was in management so I got to see how things operated firsthand, most of it dirty.  Most of it underhanded and filled with politics.  It wasn't the person who worked the hardest who advanced, it was who was friends with who, or who knew who.  It was like pulling teeth to get people promotions because despite the fact they were doing the job, some boss in some area didn't like them.  I became friends with people who only became friends with me to step on me.  They were threatened by my success so felt like lies would help them further up the ladder in the corporate world. I watched people change their core values to work at this place.  And I saw many many people cry every single day.  I was one of those people. It was a horrible place to work, but it paid great and had us in those "golden" handcuffs.
Well, a month ago, Zach walked into work on a Monday to give his resignation.  Retirement is what he was calling it.  He waited.  And waited. And waited.  2 hours went by.  Not one person talked to him and no managers were in for him to speak to.  So, he left his resignation note on his bosses desk, and on his bosses desk, and walked out of that place forever. I was so proud of him.  Unfortunately, the reasons for him leaving and employment laws that were broken never got to the right department.  We assume that letter got filed in the trash after he laid out the reason with specific examples of which and how laws were violated.
Monday, I walked into the same company and quit my job as well.  Mine was much nicer than Zach's, and I had been fortunate that I had been moved to a different department during Lucy's illness.  I was moved to one where I actually had a lot of respect for the leadership.  I didn't leave because of that. I left because I took the wrong job.  I left because I want to be home with my children. I left because I was out of FMLA protection and need to be home with Lucy for another 3 months.  There were lots of reasons for me leaving. While my current work situation wasn't horrid, the one before was.  Before Lucy got sick, I came home from that job crying every day.  I had horrible co workers who were back stabbing and just interested in being successful by stomping on who ever they could.  Not one of those people bothered to even come to a benefit for Lucy nor did they ask about her.  I worked with these people everyday.  I was a supervisor and it was my staff who was the best. I loved coaching those people and helping them try to build a career they were happy with.
I think all in all, every job you do has its ups and downs.  There are things you love, and things you can live with, But when you really, truly are NOT happy, it is time to move on.  I think most people don't figure this out in time, or when they do, they have so much time and energy invested into one company, they can't leave. That is sad. I do NOT want to be that person.  All Zach and I wanted was to earn a GOOD living and buy nice things,  and then Lucy getting sick.  Nice things weren't our priority anymore.  Having more money so you can buy nicer things, bigger homes, and more cars didn't matter if our baby was sick.  That catastrophic event has put our priorities in line, and we have decided it is time to move on.  If we can pay the bills, put food on the table, and live a happy life, and do it all while working at things we love, well that to us would be the perfect life.  Zach has become a full time hot dog salesman.  What?? you ask??? We bought a nostalgic hot dog cart last year (something we had been talking about for a year before Lucy got sick), and we started the end of the season doing fairs and catering and had the BEST time.  We loved everything about it.  The customer interaction, the freedom of running our own business, tasting hot dogs for 6 months until we found one we were proud to put our name on.  So this year, instead of just doing fairs on the weekends, Zach is set up to do lunches, dinners, catering, events whenever he wants through the week.  And let me share something with you.  Since he walked out of his job at corporate USA, he hasn't taken any anti-anxiety medication. He isn't throwing up in the drive way before work, he sleeps with no aid, and I haven't seen that ear to ear grin like that in a LONG time. He gets up early and puts on his Weber's Weenies shirt and has the proudest look on his face.  He works twice as hard for 1/2 the money and couldn't be happier.  That right there is worth it.
And what am I going to do?? Well, this summer I am staying home with my kids, finishing my 3rd book (and working on my first fiction one too-eek), and I do Direct Sales with a wonderful pampering/body product line that has not only paid our mortgage for the last couple of months, but I also won a trip out of it.  And then in the winter time, I am going to do something I have always wanted to. I am going to apply for my teaching certificate.  First, I'll sub, then I'll do the program to get my actual license. I am so excited.  I should have done that from day one.  I am proud to have the opportunity to have a "do over".
I am also proud to tell the world, I married the hot dog man - the happiest man I know.

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.