Monday, September 1, 2014

I wish I wasn't "AWARE"

First grade 2012
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Am I Aware?? You better betcha! February 6, 2012.. my heart stopped.. Well, actually it stopped a few days before because I knew.  I knew in my heart that something wasn't right. But, nothing takes your breath away like the moment the doctor's office calls and says they need you and your husband to come and not bring your child.  They needed to talk with us.  It was a gut wrenching heart breaking time in our lives. Our beautiful, perfect little boy was headed for a fight for his life... and he didn't even know it.  He was too young and too innocent to be "Aware". That's the case for all of these little ones fighting for their lives.  They are dependent on us and rely on their parents, communities, and doctors to make them "ok", "normal", "survivors".

 For those of you who don't know, September is CHILDHOOD CANCER AWARENESS MONTH.  It's not much, just one month to take a moment and acknowledge the little ones that are fighting so hard.  Before our family was forced to be "aware" of cancer, I thought childhood cancer was rare.  I thought only kids that "weren't normal" got cancer... not the fast little boy on the baseball team, or the little girl dancing on the front row at the recital, or that beautiful baby that our teacher had last year. Not MY kid.. Boy.. was I wrong.  Cancer picks no favorites and in many cases, it is a ruthless, life ending beast.  In ALL cases, it's life changing. Of the 46 children per DAY who are diagnosed with cancer, 7 of those kids will die. It's a tough thought and something that has no definitive cure.  Most of the treatments haven't changed in over 20 years. The protocols are the same.. the medicines are the same.. and little has advanced in the treatment plans.  It's concerning and frustrating.
The fox mask clayton wore for 28 days
as he received radiation on his right ear. 
As for the Castle family, let me just speak candidly.  We don't talk about cancer much in our house. Honestly, it is just too hard.  You see, we don't want to be "AWARE".  We want to pretend that cancer never touched our perfect family.. that cancer never stole our joy, kept us awake at night, caused us to be terrified anytime someone in our family has an earache, head ache, skin rash or any other common problem. You see, when we hear the words, "cancer", "chemotherapy", "radiation", etc..we know first hand what terror it is.  We know what our "chances" are. Our children have gone to camp with, gotten close to, and loved on kids that are not going to make it.  That are not cured.. or that will never be the same because of cancer.  We are aware.  We are forever grateful that Clayton fought and won.  We do NOT want to go back to those days.  We don't even want our four month scans.  We just want to turn our backs, move on and act like it didn't happen.. But, you see, we just can't because we "get" it.  We have seen it, we have lived it.  We are FORCED to be aware.
      If you're still with me, I'm just asking you to do something small.  Go to Auntie Anne's in the mall and donate a dollar. This month they are collecting money for Alex's Lemonade Stand. It's an organization that provides funds for children's cancer research.  It doesn't even cost you anything because when you donate a dollar, they in turn give you a coupon for a dollar off.  Or.. I'm betting you probably know someone with childhood cancer.  I can almost promise you do.  Give to the hospital where he or she is fighting.  I know as a community we are asked so often to give and give and every disease deserves funding.. not just breast cancer, but the kids fighting too.
                        As for Clayton, he is doing GREAT.  He is a success story.  His last scans showed him as cancer free... NED.  He will continue to have scans for his entire life in hopes that we NEVER have to face the beast again.  In honor of his fight and the many kids we are in touch with still fighting, please be aware.  These babies depend on it.
Mrs. Barrett.. Clayton's kindergarten teacher

Mrs. Barrett.. now his 3rd grade teacher

HE is why we are aware.. HE's worth it

Monday, June 16, 2014

Happy 9th Birthday, Clayton

 Today is a GREAT day!  Clayton turned NINE!  We are so thankful for his health and the ability to celebrate a birthday with a healthy happy kid who just loves every moment.
    Clayton just finished 2nd grade with all As, outstanding test scores and a 4th grade reading level.  He also completed his spring baseball season doing some pitching and playing short stop along with some outfield.  He wasn't on the most winning team, but he made great friends, learned more about the game and became a better player in the end.
     Besides having a birthday, this is a big week because he has his  follow up scans this Wednesday, June 18.  This will mark 18 months off treatment and over 2 years cancer free. We would ask that you please join us in praying that his scans remain clear, and he can just continue on with his summer and his life carefree like every child his age should. Besides a bout with swimmers ear in his "good" ear.. aka.. left.. he has been healthy and loving life.
     Thank you all for continuing to pray for him and for standing with us Wednesday as we go to Cooks. So thankful for a God who goes before us, and reminds us that His plans for us are good.

Tuesday, February 11, 2014

Tis the night before follow up scans

 Well tomorrow is a busy day for us.  Chad and I will be taking Clayton to Cook Children's for his 3 month scans.  I HATE SCAN DAY.. in fact, I hate the entire idea of scans.  The whole idea that someone is staring at a screen searching for a problem in my son's brain, ear and face, while he is laying back calmly watching a movie.  I'm nearby in a chair avoiding all eye contact with the MRI technician, sitting looking at my book, but not comprehending any of the words, and just praying and begging God for a clear report.  I would say it's just unfair, but honestly.. how could I really say that?  My son is walking cancer free and completely healthy.  No, ear aches, no fevers, no muscle problems, no broken spirit... just carefree and an 8 year old kid.  That was my prayer, it was answered... I'm feeling like that's more than fair, I guess. BUT, it still doesn't take away the anxiety, grief, FEAR, and heartbreak that accompanies Scan Day.
   This month is hard for me.  Two years ago today is when we got that awful call.  Some friends have even since told me they knew exactly where they were and what they were doing when they heard that my sweet son had cancer.  UGGhh.. oh how I wish we could go back to the blissfully ignorant life before cancer existed.  For me now, cancer is a huge fear, a threat, a monster that haunts this momma.  I just pray and pray and pray everytime the evil word lurks in my mind. I watch Clayton run to the car after school and thank God, I watch him run up and down the basketball court, and I thank God.  I hear Clayton telling jokes, and I thank God.
      I know in the last two years I have grown a tremendous amount in ways I never expected, for that I am thankful.  I have learned that we have a living God who performs miracles.  I have witnessed them and am still brought to tears when I speak of them.  I have learned that days are super precious and a gift.  EVERY day is.  One of the best things I've learned is to appreciate kids for who THEY are. Guess what.. it doesn't matter that your kid or mine is the best on the field or court.. NO ONE is going to care when he or she is an adult. NO ONE... BUT, they might remember the hurtful words or fools we adults made of ourselves on the sidelines.  Hurts to think about, but true.  Just love and encourage them to be their best in using the gifts the Lord has given them. That's a whole different blog topic there... Wow.
   Anyway,  tomorrow is the big day.  I'll go to sleep with knots in my stomach and wake up with knots in my stomach.  The doctor will pick up the otoscope  tomorrow to look in Clayton's ear and I'll hear my heart pounding in my head until he says its fine. I'll sit in that loud room with Clayton during the MRI and my mind will go over the dreaded "what ifs" that I try to avoid. The phone will ring in the afternoon/evening with the number of Cooks and I'll stop breathing.  It will happen.  I hate scan day.  Please pray for us as we go.  Thank you for holding us up the past two years and continuing to do so.  Believing for a GREAT report tomorrow.  I will be STILL And know HE is God.