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.  

Puppies and more puppies and damn you puppies

I have something to say.  And I've been holding it in or making snide remarks, but too much has come together to make this a perfect storm of a subject.  Child hood cancer.  I want to talk about it.  If you don't want to hear about it, then I suggest you leave this blog now. You have been warned. This is going to be aggressive, probably offensive to some, but the truth.  So put on your big girl/boy panties and read on if you dare.
Let's start this conversation with puppies.  We love puppies.  We have had several. We have had to potty train them, pick up after their messes, teach them to not tear up everything or eat all of Jack's army men.  We carefully selected our breeds based on our lifestyle.  We also did so as a family/couple.  If we didn't feel it was the right time for a puppy or didn't agree on the breed, we didn't get the puppy.  We didn't ask for Facebook's permission or "likes" to get a puppy, nor did we have our kids do that.  We chose this responsibility on our own and didn't pimp our kids out for 15 minutes of fame.  However, I do run a page on my daughter and share our life with those who want to know what the journey of childhood cancer is.  I pimp out my kid for cancer research funds.  Horrible? maybe.  But that's my choice. I also choose who I pimp her out to.  Maybe bad choice of words. Maybe I should say "represent".  I choose St Jude and more recently St Baldricks.  I have yet to hear from Good morning America about our 15 minutes of fame.  But I am not bitter.  No....not about the fame part. I could care less.  I am bitter that these damn puppies are making news.  We have so much more important stuff going on in our lives, and it needs to be addressed.  And not just childhood cancer, but that is of course my agenda.  And yes, we need feel good stories in the media to help us from feeling like things are hopeless and turning to shit at times.  But these puppies get on my damn nerves!! I cannot even get people to donate to St Baldricks for my head shave or ask them to "like" my page, but these kids get a puppy?? I know, you like the page/picture of the kids, and then your job is over.  If you were to follow my story or like my page, you are on a journey with me.  Sometimes hilarious, sometimes sad, and sometimes tragic.  But you know what......when you like my page, status, picture, etc you aren't just helping a family of 5 kids get a puppy.  You are spreading awareness for the 46 children each day who get cancer.  That is a big responsibility.  And yes, I will hold you to it.  You cannot simply just like and move on. I'll ask and keep asking. I'll rephrase and offer different scenarios or solutions.  So yes, there is a commitment and responsibility that comes with following our journey.
So while I stew down over the puppies (wow evokes lots of emotion in me should have taken a xanax before this post), let's talk about childhood cancer awareness.  First, there is a petition going around that needs signatures to turn the White House Gold for September.  Needs at leave 14,000 signatures, last I checked it was close to 11 grand.  And that has been going around for months! Yes there is a little more involved in signing a petition.  But wouldn't that be feel good news?? How wonderful that the White House would recognize our children? That sure would make my heart happy.  Second, let's talk about St Jude.  Recently a conversation in one of the ALL mom support groups went something like this "I hate the infomercials that St Jude does because they are so sad and something to the effect that they are a powerhouse"  Ok so those are not direct quotes, but its pretty much the gist of it.  First of all....seriously?? you are a mother of a cancer child and you can't watch a commercial about a cancer child because its sad???? Second, you feel as if St Jude takes away funding from other hospitals because of their "powerhouse" status?? um.....pretty sure St Jude put childhood cancer on the map and minds of many.  So they have not only earned their right as powerhouse, they do so while also freely sharing their research at no cost.  Running an organization where 85 cents of every dollar goes directly to the research/kids fighting.  And YOUR hospital uses the protocols from St Jude.  So its not about this 'competing' for funds.  Every cent that goes to a reputable hospital or organization that represents childhood cancer is a "win" for our kids.  I don't care if its St Jude or St Baldricks or a local hospital.  When you start conversations like this, you aren't banding together, you are competing for power from a horrible disease.  Which btw, seems to be the agenda of this particular mom support group, which I am no longer a part of because I liked to use the eff word too much.  So, I had to disclose that information so you are well aware that yes, I already have beef with this group, so maybe my opinion is biased.  It is MY opinion.  And when you start bashing St Jude, you are calling my baby ugly.  St Jude is the hospital that saved my child's life.  And I know lots and lots of other moms who go to other facilities who have saved their children's life, and they love them as much as I love St Jude.  But we don't bash each other's hospital.  We embrace them, we talk about the differences, similarities, and how we can all benefit from the knowledge.  What a great thing!! When you start to denounce hospitals, people, groups, etc because you are worried they are going to "take you 15 minutes of fame" you are not an ally...at least not in my opinion.  You are the problem.
Ok, so let me back track for a minute to the oh so sad infomercials.  Are they sad?? Do people want to click off the station? absolutely!! They evoke emotion.  That is the point.  Come on...you saw 5 kids with a sign that asked for a puppy and that evoked enough emotion for you to "like" it.  This is the same thing, except a different emotion with a little more responsibility.  And organizations have been doing this for years to feed kids in Africa or help puppies who are close to being euthanized.  Why??? because it works.  Sad that it works, but it does.  Now with that said, St Jude does a wonderful campaign of thanks and giving that is happy and joyful.  And people complain about that too!! They say our kids are not always like that and treatment is hell.  Well there you go...can't please everyone.  But the messages are still the same by evoking different emotions.  Very well done, St Jude. Well done.
So let's digress a minute and cover the important topics that I have covered. I really want you to walk away from this reading and have some great "take aways".  Can you tell I was a manager once with my manager speak?  ;)
1.  Puppies are cute
2.  it takes more than just facebook likes to care for a puppy.
3.  St Jude is a powerhouse who saved my daughters life
4.  There are so many great children's hospitals that treat cancer kids, and I love the comrade I have with the woman of the children who attend these facilities
5.  we need more signatures to turn the white house gold (go now)
6.  childhood cancer is sad....very sad.
7.  I am really having issues with this puppy thing and probably isn't healthy and should seek counsel regarding such issues
8.  I pimp my daughter out for cancer awareness, research, funding, etc because I want to save her life, her friend's lives, and her children's lives.
9. I need some donations for my St Baldrick's Shave in June (which will have its own blog soon)
10. As the Beatles would say "Come together....right now....over me"  Or "Hey, Jude..."  or "Help, I need somebody help"
ok so that last one was thrown in there because Lucy is listening to the Beatles while I type this!
Whew....rant over. Thank you to those who patiently stayed to the end.
oh, and if I start getting posts on my FB wall about puppies, I'm likely to probably go off the deep end ;)

Because we didn't have enough on our plate?

The past two weeks have really been a blur since I went back to work.  It seems as if we have no time for anything anymore. I get up, get ready, get Jack on the bus, go to work, come home, make dinner, get kids in the bath, and then its bedtime.  Oh, I remember this pattern.  It was one we had prior to diagnosis.  While its good to be back to semi "normal", I remember now the misery that encompassed our lives as well prior to diagnosis.  Of course things weren't quite as horrible as cancer, right? So we would take that back any day. But now, we have our new cancer life and our old routine life.  Not a good mix.  I never realized how much working from home was so helpful in regards to our mental well being as well as time.  Time is so precious to us, and I feel like we are being rushed again, and that saddens me.  Trying to find that balance again has been hard.  So, I wonder if that pent up stress along with some issues Lucy is having is what ultimately caused our tragic event this week.
Lucy and I went to clinic on Wednesday like normal.  She was sick the night before throwing up, but had no fever, so I guessed her liver enzymes were too high.  This happens when her liver has a hard time filtering the chemo and needs a break.  She had also had the worst dex pulse ever with tons of pain. So bad, I had to go get her morhpine.  We haven't had to have that since our first week of diagnosis.  When we got to clinic, I told them she threw up the night before, and I was pretty sure it was due to her liver, but maybe isolation would be good for us just in case.  So, as the blood results came back, I was right.  Her AST/ALT were elevated pretty high. Higher than its been since august of 2011.  Funny how mama's intuition still works, sometimes I wish it didn't.  So we decided to do a chemo hold and give her liver a break and do a count recheck today.  The doc also said that she could be coming down with a virus and that was adding to the enzyme level.  The liver is just mad at us. So we left clinic and decided to grab Zach's birthday cake on the way home.  He turned 31 on Wednesday!
We were approximately, 1 mile from home when I rear ended a car.  And not just a small bump either. :(  I hit that car with so much force that the air bags went off and the engine flew from the bottom of the van to the back and landed on the street behind it.  How did this happen??? The cop asked me the same question.  I said "I have no idea".  I could have sworn the car was not stopped, and then it was.  I am not sure if it stopped suddenly or I just thought it did.  I wasn't distracted (at least not physically), so I honestly cannot tell you how it happened.  As soon as it happened, this pain went through my hand like you wouldn't believe.  The air bag had hit it.  And my leg was also starting to burn.  I quickly asked Lucy "Are you ok?"  She took off her headphones (she was watching a movie), and said "What was that? What happened". She was still snug in her car seat and seat belt and hadn't moved an inch.  Matter of fact, entire inside of the van was ok.  Nothing was really moved except the windshield was shattered and both airbags had gone off.  A gentleman who happened to be a fireman was in the area and quickly asked me if I was ok. I was in shock.  I had no idea what happened, I asked that he check on Lucy.  Lucy was in near tears when she saw me crying.  I said "are you hurt?" She said "no, I'm scared because you are crying". So I tried to stop quickly, and I found my phone in my purse and called Zach to tell him to come get us. Mind you...we were a mile from home.  Not even I bet.  He got there quickly and Lucy was smiling when she saw him.  I asked if the other driver was ok and wanted to get out of the van, but they wouldn't let me.  Finally, Zach got Lucy out and the ambulance worker moved me to the ambulance to check my injuries. I refused to go to the hospital. I could walk and was just a little shaken.  I had gotten a pretty good bruise from my leg hitting the steering wheel and my hand is swollen (probably a hairline fracture but there isn't anything they can do for that).  So what a crappy day.  Zach was awesome.  He said "Gee hon I didn't need this big of a birthday present".
So, the accident was my fault (it is always the persons fault who does the rear ending), so I got a ticket.  My first ticket in 18 years.  And after we did all of our insurance stuff and statements to police, we went home.  I cried and cried and cried.  I tried to replay the scene and figure out what happened.  What distracted me? I still don't know.  I wonder if the stress just overtook me from the appointment.
That night we still celebrated Zach's birthday. I mean so we have a totaled van, but Lucy and I walked out of it with me having a couple of bruises.  So that was also something to celebrate. So around bed time, Lucy started feeling warm :(  So we took her temp and dammit!  It was 100.4.  That is our cut off for going inpatient. So we called our onc who was on call, and he suggested we retake it in an hour and push fluids. She had just come off dex, and it isn't uncommon for her to run low grade fevers after it.  Plus there are so many sick people in the hospital, it was best we stay home since her counts were at least high.  So we rechecked in an hour and it had gone down to 100.1.  So, we went to bed, and set an alarm for every hour and checked it.  By 3 am, it was finally normal.
Whew!  What a long long day.  So that is how Zach got to spend his 31 birthday.  We are waiting on the collision place to tell us how much damage and if its a total loss.  So far they were at $12,000 damage and the claims adjuster wanted to see if it was worth fixing or totalling out.  That is where we are at today.  Lucy has to get her liver rechecked today, I have to get xrays, and we have to figure out a rental car.  Awesome right?? I am thankful we are ok.  That is what matters. We bought the Memphis Belle to get us to St Jude and back safely, and it did its job.  It kept us safe.
I have posted some pics....Let's hope that our plate starts to become less full, and that we learn to adjust to the new stressors introduced back into our life, and that Lucy's body starts to mend from the poison we put in it daily.

Empathy--Either you have it...or your a(n) (insert choice word here)

Empathy -is the capacity to recognize emotions that are being experienced by another sentient or fictional being. One may need to have a certain amount of empathy before being able to experience compassion.

I did it! I went back to the office.  And there are all sorts of emotions surrounding this ordeal.  I know I have been fortunate to have had a company give me the option of working from home for the past 2 years, as some people don't have that opportunity, but it doesn't make going back any easier.  Let's talk about this.

Thursday: I went to my old location since I am being moved to a new position.  I thought this would be great! a perfect way to step into old familiar faces and grab my belongings.  I was wrong....wrong wrong wrong.  So I go in and get to see my favorite face, our security guard. Oh how I love her so.  She is so nice and kind and always asks about Lucy.  Then I see some familiar faces down the hallway, so I go down to say hello.  One person out of 3 said hello and gave me a big hug.  The other slammed her door when I walked over there.  That was nice.  Nice touch.  That's ok, we didn't get along very well anyhow when I worked there for 4 years.  And since she hasn't asked me once how Lucy has been since diagnosis, it was of no consequence, just a bad reminder is all.  So after I chit chatted with one of the ladies, I went to get my stuff and start sorting. I had 6 boxes! Why in the hell I had 6 boxes is beyond me.  That is when the emotions kicked in hard.  I opened the first box and you know what it was filled with?  Pictures....Pictures of our life before...before cancer.  My heart started racing and my brain immediately took me back to day 1 of diagnosis.  I started sweating and getting nauseous.  woo...I had to take a break!  So I went to the bathroom before trying to open up the other boxes.  Mostly it looked as if somebody just took their hand and swooped all my belonging into a box, and even some things that weren't mine. There were broken mugs and even some things I had no clue what they were, but they were in my boxes.  So that was an easy box...trash.  I then went to open another, and I'll be damned.  More pictures.  This time, they were of Lucy at her birthday.  She probably had cancer then, and we didn't know it.  And then sitting at the bottom of the box was one lonely Christmas present.  A gift I had bought at the company store for fun that I had forgotten to take home the day before.  That pretty much did me in.  I left, dry heaved in the parking lot, and came straight home.  I made it 2 hours.  2 hours before I started bawling and was a complete mess.  It was such an unhappy place to be.  I wasn't all that happy working there before Lucy's diagnosis, so it was even harder to go back now.  I am happy that I am starting fresh at a new location with new co-workers (some old ones too). I really hope I never have to go back to that place again.  I didn't realize how unhappy I was until I took a step back.  Plus the memory of Lucy and our life BC (before cancer) is wrapped up in that building. Lucy was not even a year old when I started there.  

Friday:  I get ready for work and am running late. I 'm always late. Only it wasn't because I was unprepared which is the norm. It was because I had a panic attack that was so horrible, I couldn't even see straight.  The dizziness was a nice touch.  After downing my happy pills, I jumped in the shower, and I actually put on make up.  That's nice.  And different.  While I love my pajamas, its nice to get up and take a shower every day!! I was lucky to take one once a week before.  Not saying that I don't change into them the second I get off work, but for a few hours to wear makeup and smell good is a nice change.  I made it to work by 9:30 on Friday. I had hoped to make it there by 8:30, so an hour late wasn't horrible.  And my actual "report back to the office" date wasn't until Monday anyhow, so this was just a way to help me acclimate around people.  I think what I fear the most is that I have lost my filter and patience for people.  I no longer see insignificant things as important, and I no longer mind telling people about it.  That isn't a good quality when you work in a corporate environment.  So far, so good. I did share this fear with my new manager, he assured me I would be just fine.  I hope he's right.  So I spent 4 hours at work on Friday.  It was weird.  Mostly I was unpacking my boxes, getting to know my location, and had a meeting with some co-workers.  

I have to say it was so nice to come home that Friday night and know that I wouldn't have to get on my laptop and do any work.  I haven't been able to say that for 2 years.  That is a total bonus to working in the office, and not being in a management position any longer.  You truly work in the office, then you come home.  And home is home.  It hasn't been that way for me for the last 5 years.  

Monday-- I did MUCH better!! I was actually at work by 9 and stayed until 5.  A full day!  And it was so quiet.  No screaming kids, no laundry or food to make.  Just work.  Well, I didn't do such a great job with sitting in my cube and just working.  I think I am going to have to buy some headphones.  I need noise!  But I will admit, taking care of me, and just me, was really nice.  And I don't just mean that in the sense of home and taking care of kids, dogs, husband, etc, I mean that also in terms of management.  I didn't have people coming into my office to tattle on each other, I didn't have to put out fires, and I didn't have drama of people stepping on one another to climb the corporate ladder, like I was once accustom to.  I don't know why I hadn't left management a long time ago!! I got so wrapped up in my expectations of what I thought it would look like and what mark I thought I would leave, I didn't see how stressed out I was.  

Today-- Today I was there at 8:30!! woo hoo!! No nausea, no vomiting.  I was a little excited to hang up my new pictures. I was a little excited to sit in quiet and drink my coffee!  Just a little!! Today was a regular day.  I got a lot more work done than yesterday.  I'm falling into routine, but I have to say, my butt hurts.  I am not used to sitting in a chair all day.  I will have to get up and walk around to remedy that.  I even actually ate lunch at my desk.  And again...it was quiet.  I can't get over the quiet....its unnerving.  I forgot my ear buds again.  I have to remember those!! As soon as 5 rolled around, I was ready to go home. And home is another story.  Its that rushed feeling again, and I have to make sure we don't do that and get in that life style.  But when we are both at work, home is so busy in the evening. I only get a couple hours with my kids :(  and those hours are filled with dinner, baths, homework.  I miss not seeing my kids get off the bus.  There are pros/cons to this situation.  I'm trying to stick with the pros of the all around situation, but its not easy.    

Zach on the other hand isn't having a good acclimation back to work.  He has a new manager who seems to be really angry about the agreement we have been given to work from home.  I am not sure why.  You would think he would be on board and know if he was in the situation, he's working for an organization who would have his back.  Nope....apparently he lost his empathy a long time ago or never had any to begin with. And that's sad.  Zach is supposed to be able to work from home and the office and be flexible based on Lucy's needs.  Somehow and somewhere along the line, that seemed to make somebody angry.  That somebody probably doesn't have a kid with cancer.  Probably never had anybody close to them ill or had to take care of somebody they love and watch them go through pain and agony.  Empathy can't be learned, it has to be experienced.  Poor Zach ended up with a person that lacks that.  

When Lucy got sick, we were offered a work agreement. We didn't ask for it, it was graciously given to us.  Unfortunately, I don't think some people understood this or it wasn't communicated to them, and due to this we have been "banished" by some former co-workers.  Whatever.  They haven't experienced what we have, so I don't expect them to "get" it.  Anyhow, now that we are going back, our management has changed.  And for some reason, Zach's manager doesn't like the agreement.  Zach asked him why it made him so angry.  He just told Zach that he hoped he knew this wasn't going to last forever, and asked him what he had been doing for the past 2 years to plan for this return to work part time.   BWAHAHAHAHAHA  Seriously?? obviously he doesn't read my blog.  What have we been doing???? And YES! we hope this shit doesn't last forever.  And how dare he even say that.  We would wish and give anything to go back to where we were before even though it was a shit hole place to be if it meant Lucy didn't have cancer or have to go through treatments. We would gladly give back this agreement they gave us if it meant I didn't have to talk to my 5 year old son about how his sister might die.  I would gladly go back and work with that horrible co-worker if it meant I was not introduced to at least a dozen children who have died.  Actually, I wouldn't do that last one. I met some very special and wonderful angels and families.  And while I wish I didn't have to watch them die, their life, while short, was full of meaning and love. And I am aware now.  Aware of something that I refused to look at before.  And I really hope that this person understands that Lucy will NOT have cancer for her entire life.  And that we won't be in treatment for very much longer. And that we won't need such an arrangement that was OFFERED to us.  Its 3 years out of our lives.  A long 3 years- yes, but put that into perspective of a career.  Its short.  It's 3 years out of 30.  Why does somebody have to be so hurtful and hateful because we have a child we care for and get to work from home part time.  Why does that affect him?  And what about when treatment is over? Why would somebody want to basically say they are looking for ways to fire someone and take the livelihood away from a family who is already struggling as it is.  That's just cold hearted and mean.  Why does that give anybody satisfaction? Or why is that even a mission?  And to say its because its a business and work needs to get done is BS.  There are more people that work from home full time just because and in the same work capacity as Zach.  Matter of fact, they are starting a new pilot right now! We have technology on our side and can work more efficiently and effectively from wherever we plug in.  I guess I don't see the need to press the issue about this work from home thing, then again, I am biased, and do not lack empathy.

So...while going back to work for me has had its share of good/bad. Zach got the short end of the stick. 

Just in case anybody forgot : 

Empathy is the capacity to recognize emotions that are being experienced by another sentient or fictional being. One may need to have a certain amount of empathy before being able to experience compassion.

Goodbye 2012.....HELLO end of treatment 2013

This has been a long time coming.  I have several very good reasons for not doing our Christmas letter or end of year letter or whatever people like to call it.  One being, we have been incredibly busy and steroid week happened to consume the first two weeks of December, and the second being, my netbook died. It was such a sad sad moment.  I wrote 2 books on that thing and took it to Memphis with me on every trip.  It was like an attachment of my body. When it died, I mourned.  In fact, I still have it sitting next to me now.  I cannot bare to part with it just yet. I am quickly adjusting to my new friend and writing tablet, chromebook.  And it does have a bigger screen and better keyboard for typing, but there is something about your first love and what I wrote my first book on.
And as I mentioned before, steroid week has turned into weekS, plural.  I swear each pulse gets worse and worse.  We are chronicling the next one.  From the first dose to when it finally seems to leave her system.  It really is amazing.  Just one pill and you see the change.  And she doesn't sleep, so we don't sleep.  And it takes both of us to get through the pulse, and nothing gets done around the house but making food...lots of food, and lots of holding Lucy and watching movies.  I do not know how single parents do the cancer gig.  I need lots and lots of antidepressants and anti-anxiety meds to get through it.  And Zach and I tag team it.  Hell sometimes we are both in the ring at the same time and then take turns crying when we get a down moment.  We only have 3 more of them to get through, but when they last 2 weeks, that is a lot of time of your life consumed by a drug.  As you can imagine, we have our last pulse marked on the calendar!  And that is a funny thing too.  While we are so excited to be done with steroids and treatment all together, we are scared shitless.  This is the end of a new life we JUST now learned to adjust to, and the end of the chemo. The life saving chemo.  The cancer preventing chemo.  The vile poison that we put in our daughter's body to save her life.  That is irony.  We are afraid of the chemo, yet we are in love with it.  What happens when she is done taking the chemo?  What prevents her body from making leukemic cells?  Or what if it does?  What is there to stop it from spreading?  And then of course, all of the fears I had in the first two weeks of treatment are starting to come back and haunt me.  The fears that I had to put aside because I had to deal with one thing at a time.  The fears of the side effects of what we just did to her little body for 2.5 years all come flooding back.  I start to recall the statistics and side effects and secondary cancers, and short term memory loss, and all the other shit that was thrown at us while we were signing a million papers that first week.
Oh and did I mention that first week is also coming back to me?  Funny...I blogged about it, but yet I managed to block it from my memory.  Repressed is more like it.  And all of a sudden......here it is! Staring me in the face.  We just had our 2 year cancerversary, and that is when it hit me so hard.  I thought I was ready for it, I took months to prepare for it, even had to do some counseling sessions over it.  And the day it came- BAM..knocked me on my ass.  It was the day after Christmas. And I am not going to lie, I had a fast heart beat the entire day.  I tried my best NOT to think about that day 2 years prior, but I couldn't.  I couldn't stop looking at pictures, and Zach and I started remembering things that we hadn't before.  We laughed, and we cried, and we remembered.  It was horrible and yet it was much needed.  2 years of living with cancer and yet it really seems like yesterday.  Its still scary, and it has forever changed our lives.  It has changed who we are or rather who we were.  Our outlook on life has changed, our priorities have surely changed, our friends have changed, and even how we act/react to people has changed.  We no longer have a filter (which wasn't real good to begin with), so that affects relationships for sure! ha! And of course what we thought was life and living, was not.  So we had to make some adjustments to that and we still are.  And now, we ease back into our old lives as we prepare for Lucy to be off treatment, and you know what....we don't want to go back to our old lives.  We longed so much for it, and now that its here, we realize our shitty it was.  We worked all the time.  We spent little time with the kids and each other.  We worried too much about money and getting "things" . We were doing what we were brought up to do.  We were so wrong.  So how do we go back to life the way it was without falling victim to going back to life the way it was?  hmm...... I don't know the answer to that yet...
ok..so after rambling on...let's get to the year in review ;)  I don't remember anything! hahahaha  I know Lucy started preschool.  I know we got a new dog.  I know we got to go on an amazing vacation for a long weekend to Branson, which was MUCH needed. Jack had a wonderful "normal" birthday party. We started a new business!! Weber's weenies!! I wrote a book.  We raised so much money for St Jude! I am so proud of it.  I think we are in the 10,000 range as far as total raised.  Which for one family and a garage sale....is pretty damn good.  Oh and of course our outlook on life has changed dramatically.  Our life goals have changed.  And our bucket list is no longer a want to do list, but is quickly becoming a "I did this" list.  And we keep adding to the list ;)  I LOVE our new list.
It is odd that as I sit here and try to "recap" our year, my mind goes blank.  I cannot hardly think of one thing cancer related.  It is like that is everyday, so nothing sticks out. Not like our first year when EVERYTHING stuck out.  And I wonder if that is why I am so nervous about the end of treatment coming. Its not just about that, its about us having to change our lives AGAIN.  And this time, we know more.  We want more. And we don't want to go back to our old "normal". We want a better "normal" than BC (before cancer).  You know, my psychiatrist says that I have PTSD.  He says Zach and I are an interesting "study" because he has wrote books and did most of his research on Vietnam war vets with PTSD, and he is astonished at how similar our actions and reactions are.  And there are some new studies out that have found most parents of cancer patients tend to end up with PTSD.  Its a new concept.  Interesting and scary, and yet I am glad people acknowledge what families go through.  That didn't used to be the case.  And like many other people who experience PTSD, people around you will never know how you feel or "get" it, or even be able to show empathy.  We have to learn to adjust to that.  We have to remember not everybody has been in our situation, and that is a good thing.  We forget. So when somebody fails to show empathy, we tend to be assholes to them. Just being honest here!  And the filter I mentioned that we do NOT have...yea...that tends to come out.  I guess since we have been through what we have, I feel as if everybody needs to take a class on empathy.  I have a lot more of it now, and it doesn't necessarily mean I have experienced the same "things" as the people I feel it for, it just means I can respect their feelings and not judge them based on them.  A lot of people need to look into that.  It would make the world a more caring place.
As I say goodbye to 2012, I say hello to a new life in 2013.  We have 6 more months of treatment.  wow!! After 2 years....all I can say is wow.  I am speechless....and that NEVER happens.  Wow!

'Twas the Night before Steroids

Twas the night before steroids, and the Webers were numb
They were trying to sleep, to prepare for the storm to come
The sausage was stocked in the fridge with care,
In hopes that only sweet Mary would be visiting there

Jack and Lucy were nestled all snug in their room,
having no idea  of the pending doom
And Shawna with her xanax, and Zach with his scotch,
Had just prepared their brains for the week of the steroid launch

When the morning came and the first dose was took,
Taco and Clark quickly  ran from the flying book
Our sweet little Lucy is changed with just one pill

It turns her to Dexter with intent to kill.

As the day goes on, the food consumption increases

As mom and dad rush to fill her plate with mac and cheeses

Then it happens, one makes a mistake….
They make direct eye contact for goodness sake!

With a curl of her lip its over and done,
I knew in a moment it must be an evil one.
With the shrill of her voice the demands came
And mom was trying to figure out with Lucy it was by name!

"Was it Dexter! Lucifer!  or, Nellie or Mary!
Oh how the family wished the pill made her not so scary
At the top of her lungs from room to room
The stomping of the feet was going boom boom

As she threw her fit and let things in her room fly,
the parents went to the kitchen to prepare food and stand by.
Soon the fit would be over along with a personality change,
With kisses and hugs you will be able to stay within range.

And then, in a twinkling I saw in her eye
The prancing and dancing of Lucy went by.
As I drew in my head, and was turning around,
Along to the Kitchen sweet Mary was found.

She was naked and hungry, but happy as can be,
What kind of food would she want now, we shall see.
Without making the mistake of making eye contact,
I sat down a plate of food and then stepped back.

Her eyes-how they twinkled! As she looked from her seat!
Her cheeks were like roses, due to the dex induced heat!
She ate her meal and cleaned up her plate,
A relief, a sigh, came from her parents after the wait.
One meal down, one fit done,
but you can be sure there is more to come.
As she takes the doses each day,
It’s a drug her body needs, but a price her body pays!

The dex pushes out the cancer that may be living in her marrow,
So the chemo can kill it before it controls her body like a pharaoh
As each pulse begins, continues and ends
We try to prepare for what to expect and what it will lend

We had no idea the impact of how this drug would work,
And hope the side effects don’t make stay and lurk.
As soon as the pulse is over and she takes her last pill
The following week is nothing but pain filled

She lays on the couch and cries over the pain in her leg
Every once in a while, she’ll have a head  “egg”
But as the pulse passes, and the end is sight
We only have 3 rounds left, so there is a shining light.

A fever by any other name.....

Wow, its been a month since I blogged last?? That can't be right. I have so much stuff in my head that I guess I thought I wrote it down.  Apparently not.  Maybe that is why my stress level as seemed to escalate in the past few weeks.  When I blog, whatever is floating in my head comes out on paper, its not gone, but it sure does feel better to expel the demons.  So I don't quite recall where we left off on the Weber bad luck streak, as it seems to escalate more and more with the passing days!  Plus I wish FB would chronicle everything in a nice cloud environment so I can keep track of our daily "incidents" so I can transfer those stories here.  Even amongst all the chaos, we still have plenty of hilarious incidents.  Lucy is definitely keeping us on our toes.  That child has done every conceivable thing that I didn't think I would ever have to worry about as a parent!! Her level of mischievousness and orneriness outplays and outlasts Dennis the Menace any day of the week!
We have had the following happen in the past few months alone:  She has taken her hand print and left it as a keep sake on our window sills with marker, she has painted one bathroom with toothpaste, the other with butt paste (yep you read that right), she found her birthday present (tea set) and had it laid out along with frozen fruit and all my chocolates while it was a Sunday nap and the rest of us were..well..napping.  She found a dead mouse in her fan, we are assuming he was in her room because later we found food stashed under her pillow (again).  We most recently found toilet paper all over...I mean rolls and rolls of it.  Come to find out, they needed the tubes so they could play pirates. Yes, both of my children, but it was Lucy's idea to just take the TP off and hide it.  She has taken my scissors, and as I found them in the kids' room, she has yet to fess up as to what they used them for.  I'm sure we will find out soon enough.  She has taken lotion, hand sanitizer, and make up from my bathroom and not only used it ALL but filled it up with water to make sure it lasted longer.  She has nearly choked Taco to death by putting boas around his neck and making him play house with her.  She took approx 100 tiny dixie cups from our cupboard and stacked them up to where they covered her ENTIRE room!!! And some were filled with water.  And mind you, she is quick like Flash!! She can do these things like a ninja (or inja) as she calls it.  I have to admit, she makes me laugh.  She's a stink....but makes me laugh.
So back to the rest of the Webers.  Zach had another surgery and it looks as if it took this time!!! yay!! He no longer drools out of the side of his cheek and down his neck...yes that was happening.  He is finally back to work after I think 8 weeks off.  And Jack's rash is gone from his HSP.  We have to take him to the doctor every 4 weeks and get blood work because apparently the aftermath of this disease is kidney failure. Nice, huh?  We also have to get his blood pressure checked ALL the time as that is another side effect.  WTH?  two kids with blood disorders...really? And a dog too!! We have had every test done to this house, but I strongly believe its the water.  I don't care what the EPA says, when we put in a 10 grand system and our water still comes out brown because the owner of the well and the city has no regard for the safety of the citizens out in colonial meadows, the water cannot be safe to bathe in let alone drink.  But that is another rant for another day.
So as I am "catching" up on everything, something has occurred to me.  I remember reading about children who were in the last phases of treatment on their caringbridge and being so frustrated that they didn't post more often.  We were in the beginning phases with Lucy, so I wanted to know what to expect or when to expect good things, so I would follow children who were nearly done with treatment.  I also followed those who were knee deep into as well, but I wanted hope, I wanted to see the future, and it was frustrating that those parents did NOT keep up on their pages!! Well now I know why!  I AM one of those parents.  You know what happens? Life goes on.  Life becomes a new normal.  You suddenly feel consumed with everyday tasks again that once were not important at all, or you have found new tasks that have become EVEN more important.  As is the case with me.  I have found a new purpose and I actually know what I want to be when I grow up. FINALLY.  And I realize that I have put the blogging and the updating on the back burner.  Which isn't necessarily a good thing for my own psychological well being since I use this outlet as therapy a lot.  And its not necessarily a good thing for other parents/families going through this because I'm not showing them that life does go back to a "normal".  Its different, but yet the same.  Counts, chemo, clinic, and all the things in childhood cancer become a part of everyday life.  And I cannot honestly say whether that is a good thing or not, its sad in a way.  But I will say this: We do get comfortable, and things become normal, until that day you wake up and see another child has died from cancer.  A child who has the same kind as your child.  A child who is in remission and close to being done with treatment and died from complications.  A child who went into the hospital with a fever and never came home.  Then you stand up and think "oh, shit! how could I get so comfortable?" Yes, that happens too.  And it has happened to us recently.  It scared the shit out of me, and still does.  Makes me uneasy, and makes me cry.  And to everyone out there who are just bystanders in this journey and offer support but do NOT have a child going through this, let me tell you that just because we have at times become comfortable, and we do go on with everyday life and fall off the grid from time to time, and that counts and chemo are an everyday part of life, nothing about his should ever be normal or comfortable and know that we are still fighting.  No, we are not in phase 1 of treatment.  Yes, the shock has worn off some....but I still find myself in quite a bit of shock or disbelief that this is happening.  And we are still very much knee deep into this battle.  Yes, its been 2 years.  TWO YEARS! please don't forget about us because Lucy is doing well with treatment, or forget about us because after 2 years already we should be "used" to this, or after 2 years we should have adjusted.  That's not how this works.
I have a friend who's child is OT (off therapy).  Done! yay!! no more chemo!! but you know what? Her fear and her fight still goes on.  She woke up this morning to her daughter having a fever.  What does a cancer mom do? FREAK OUT!  Then she stopped and she paused.  And she said to herself "I have no idea what to do about a "normal" fever".  That is when I realized that we may say we are living a new normal, but how wrong it is.  Its not normal.  It shouldn't even be a new normal.  We are living....we are fighting...and nothing about it is normal.  I will forever be afraid of a fever because of what it represents to us now, and what it can represent in the future.  Fever is the first sign of childhood cancer.  Our friend Logan walked into a hospital with a fever and never walked back out.  A fever while nuetropenic is life threatening. A fever is not normal for us and probably never will be again

What does the "F" word have to do with the "C" word?

Can I constructively create a blog post about cursing, without using a single curse word?  THAT is my challenge.  So there are times that I lose it.  In this journey there are things that are going smoothly and there are still days that are horrid.  It seems to be cyclical.  Some occasions remind me of early diagnosis, and sometimes just seeing a picture of Lucy pre-cancer causes me to have a total meltdown either sad or angry.  It is these times that I find it appropriate to have mini-meltdowns.  Of course I don't do them in front of my children, and prefer to keep them to myself so that somebody doesn't admit me to the psych ward (even though Zach and I have often fought over who gets to go there first for a vacation).  And during these meltdowns two things occur sometimes both at the same time:  I cry or I cuss.  I do neither quietly.  I don't know what it is about cursing that makes me feel as if I have expelled the hurt, pain, fear, and sadness  They are just words.  Words can mean anything given in different context.  But knowing they are discouraged from being used in the public, makes me feel better when I lose it.
Let me give you an example in case you are not quite following what I am saying.  Ever seen National Lampoons Vacation?  Christmas or the original?  Clark is hilarious.  He tries so hard to make things perfect for his family in his own twisted sort of way.  But there comes a time when he finally realizes that everything is going down hill fast, and that is when he loses it.  During these "spells or episodes", he is cussing and yelling and going off the deep end.  Those are my most favorite parts of the movie.  Why? Because that is SO me!  ha! And I would quote what he says, but of course then I would lose my challenge about not using a single bad word in this post.
So where am I going with this?  Well I belong to a group of other moms who are currently in the same situation as me.  Their child has leukemia.  We have this group that I mentioned in my book as being a "safe" group.  It was a place where I could have mini meltdowns and still know that I wasn't being judged over it.  And usually, when others had meltdowns, it made us all feel "sane".  Like we weren't the only ones that found comfort in the bad words expelling from our mouth either with our voice or our pens.  To so many, it was satisfying to them as well.  After all, its not appropriate or even worth it for me to write down all my melt downs in my blog posts (there would definitely be over a million), and Team Lucy is a page of positive thoughts and information on her and her condition, not a place for me to "lose face".  I loved this group, I coveted it, and it was like a special club that I didn't have to share with anybody but the mamas in it.  Well, something happened to that club.  It was growing and growing and growing.  Which in itself is so sad to know that a group like that can grow so quickly in numbers when we are referring to kids with cancer.  It no longer became intimate, and we were asked not to post our vents on their anymore as to not offend anyone.  I can appreciate that.  I really can, however, it doesn't mean I wasn't heart broken.  Everybody deals with things in their own way, and to be told you aren't allowed to express yourself any longer the way your are accustom to and still feel safe, and to feel as if you are now being judged based upon it...well, it was a sad day for me.  If I can no longer vent in the way I feel most comfortable in the safest place in the world, where can I do this?  Where can I get out my frustration, anger, and even sometimes just a build up of petty little things?
When you are appealing to the masses and want to be part of  group or organization and be popular, you have to have guidelines and please everybody.  And that is not possible. You cannot please every person in a large group, but you can compromise. OR you can skip the vents or mothers who you don't align with based on certain values, and go to the ones who do share your views or even curse words here and there.  Well, compromise did NOT happen, so I was more or less scolded and chose to remove myself from the group.  I did not feel "safe" any longer.  And it still baffles me that people who are going through the worst possible situation in their lives thus far were offended by language.  By words.  So What does the "F" word have to do with the "C" word??? They are both words.  They are both dirty dirty words. They are horrible to say and feel yet one can be so satisfying to say in front of the other.  Why?? and is it just me?? maybe....but I think its a double standard to say that one word is dirtier than the other.  Considering the definition of both, its ironic that they basically mean the same thing!
Whew!  For those of you wondering....yes, I have a new group for my safe place. And yes, I failed my original goal.  I did not make it through this post without using a bad word.  I said cancer way too many times!

Let's add another acronym to the list!!

Wow! so I would say this past week was just about as nerve racking and busy as the previous two weeks.  I swear it feels like a month has passed since I posted last.  Well, Jack ended up having a horrible horrible rash on his legs, it got so bad that we had to take him to the ER at the Children's Hospital in Peoria.  I was NOT going to deal with the ER here in town again. We had found out since our trip, Jack had blood in his urine, something that the ER failed to tell us and something they let us go home with.  We were certain he had HSP, which is a rare autoimmune blood disorder.  It was something I mentioned on day 1 at the ER and was dismissed in a hurry.  HSP can only be serious if it attacks the kidneys, which blood in the urine is the first indication.  So I was livid when I found out about that and nobody bothered to tell us.  Anyhow, the second we went in the hospital, they said immediately upon arrival, he had HSP.  Before blood work or anything, just based on his symptoms, they were certain of it and would do tests to confirm.  They gave him anti itch medicine because at this point, his legs were so swollen and the rash was ALL over and he was in pain.  They took care of his needs right away.  As they did the blood work and was waiting for the urine cultures to come back, they felt like it was serious enough to make him stay all night.  They wanted to observe him. Oh, and I had taken him back to prompt care on Saturday because he had another different rash and his throat looked horrid, so in the middle of all of this he got strep throat. Normally, HSP can be brought on by strep, but Jack just happened to GET strep while having HSP...the doctors told Zach "lucky you".  So that was last Sunday.  Zach had to reschedule his surgery for Monday because he was overnight with Jack.  Monday afternoon, they released Jack with the official diagnosis of HSP and sent him home with pain meds and anti-itch medicine as his legs were so bad that benadryl didn't even cover it :(  That night was horrible.  He was so uncomfortable.  He cried all night :(
So Wednesday (2 days later), he finally felt comfortable enough to go back to school.  And that same day Zach had surgery at 6 am and Lucy had clinic, plus it was Halloween. Wow! Talk about a packed day.  Zach's mom came in to take him to surgery, and I got the kids ready for school and clinic.  That was a looong morning.  Lucy was fighting me on everything.  She has had some real discipline issues lately.  It got so bad that she was hitting me and calling me names.  I gave her several warnings, and finally had to pull out the big guns.  I told her I would take away her Halloween costume if she didn't stop, she said she didn't care and continued to battle me on going to clinic.  So, I took it away.  Then I told her she was not going to get to go Trick or Treating.  Again, she was still hitting and said she didn't care.  All of this over wearing pants.  She continued to hit and yell, so I dressed her and finally put her in the car.  We dropped Jack at school and headed to Peoria for clinic.  She calmed down finally once we got there, and don't think she didn't let all of the nurses know that mommy threw her costume in the garbage! hahaha  We were over 2 hours late to clinic due to her escapades.  So she ended up missing school. Zach was home from surgery once we got home from clinic.  Doc said that he thought things went well and we would have to wait a week to see.  That night, trick or treating came.....guess who didn't get to go??? yep! I stuck to my guns. It was hard, but she had been so deviant, I had to make a lasting punishment stick.  The first thing Dr Pui told us when we were admitted is that she WOULD get better and that if we stopped disciplining, we would have a monster on our hands.  And Lucy, by nature, was already a stubborn little girl and full of mischief, the cancer just added fuel to that fire.  It was the hardest thing to walk out the door without her.  But I have to say, not only did Jack and I get some much needed one/one "normal" time, she learned her lesson.  So much so that we had a radio interview the next day, and when asked about Halloween, she said she didn't get to go trick or treating because she made bad choices!! lol!!  I'm sure the audience was like "what a horrible mother not letting the cancer kid go trick or treating".  But that is just the thing..she has cancer, she's not immune to discipline.  I had someone comment on her Team Lucy page that I would "regret not letting her go if anything were to happen to her". I had to ban that person. Sorry, but I'm the parent, and first, I don't need advice on how to raise my child, and second, why would you even say anything about "if something happens".  That something could be anything in life, regardless of the cancer, but we don't stop disciplining our children over it.  It was trick or treating, I didn't lock her in a room with no food!  And no negative posts are allowed that encourage that type of thinking anyhow "what ifs" are NOT allowed.
That was last week, and this starts a new week of chaos.  Unfortunately, Zach went back to the doctor and he is NOT healing the way they wanted.  He is still having saliva come out the side of his cheek (on the outside, as in running down his neck).  So the doctor told him to sit still for the next week and do NOTHING!  Its driving him crazy, but he's also scared about what his options are for a 3rd surgery.  It has a great risk of causing facial paralysis.  We really hope we can try something else, as our luck isn't the best, and we would just assume NOT have to go there.  We go back to the doc tomorrow for him, so we shall see what it brings.  Jack seems to be completely better, and Lucy is picking fights, so I assume she is healthy! lol  As healthy as a cancer kid can be anyhow.
So to sum this up....I'm so tired of all the medical acronyms we get to add to our list.  HSP was definitely NOT what we were looking forward to, but its better than Cancer.