Clayton Officially WON

  Five years ago tomorrow I was standing in my house folding clothes.  My mind had been gone all week because I knew in my heart that the phone call I was awaiting was not going to be good news.  I knew deep down that Clayton had cancer.  I remember praying for a miracle those few days of waiting and hoping for the all clear, but somehow I knew it was going to be bad.  What I didn't know was exactly what that phone call would do to me.. to us.. to Clayton.

Clowning around at Cooks on our LAST scan day!

Oncologist, Dr. Heym

  It was the early release day for the kids in February when the call came and life after that became different than anything we could have ever imagined.  We went from blissfully ignorant, to terrified. We rushed to find the best doctors, spent weeks at Texas Children's, cried,  had numerous surgeries, cried, prayed, had more scans, cried, started 42 weeks of chemotherapy, watched our adorable innocent boy go bald, held our other crying kids who wondered where on earth God was, cried, drove 28 days straight to radiation treatments in Ft. Worth, and cried more.  After he completed his long year of grueling treatment, we took a fantastic Make a Wish Trip to Disney, which is a memory forever etched in our hearts, and then we faced follow up scans.  First they were every 3 months, then every four months, then every 6 months...getting a little easier each time.

      Today we had Clayton's 6 month scans at Cook Children's and were told that he would NOT BE SCANNED AGAIN.  We were told that based on his "roadmap" or treatment plan, he officially has the all clear!  Talk about an amazing feeling and an incredible end to 5 years of heartache, fear, anger, and suffering for Clayton.
 

5 years ago at Tx Childrens

MRI with NO sedation..ever

 If you know Clayton, you know he is incredible.  He's smart, strong, kind, funny, actually.. hilarious, sweet, confident and completely untouched.  He amazes me everyday.  The things this child has seen, experienced, understood, feared and lived out have done nothing but created in him an amazing little person who is literally only changed for the better.  The covering that the Lord put on Clayton both over his health and his heart is something that will make me forever grateful.  He is absolutely mature beyond his years and he has a beautiful testimony to share...when he is ready.

Chest Xray

 

Not pictured is Chad :)

   Today I don't believe it has hit me yet that this era of his life..our lives.. is over.  He made it. He won!  He is FREE!  To God be the glory! Great things He has done.  He absolutely healed my son.  He protected my boy, his siblings, and my marriage.  He spoke to my heart daily and honestly the sweet memories of how the Lord met me in my darkest days are truly
  some of the most precious moments I have lived even though they were the hardest.  "For this child I prayed and the Lord has given me what I have asked of Him" 1 Samuel 1:27.  We must NEVER forget the goodness of the Lord. Thank you to all of you who prayed us through.  We love you dearly!

Clayton found himself on Cooks Cancer Kids Board

 

And 10 days later...

     October 23 Clayton had his routine follow up scans at Cook Childrens.  It was pouring down rain, but we went through the monsoon, did the tests, and made our way home just as is routine.  This set of scans was different then most.  I didn't feel nervous.  I had a new calm over me the weeks leading up and even during the scans and waiting for the results. I just felt like it was all ok. 

  After weathering the storms and the road closures on the way home that Friday, we got the call we always get from the clinic, except this time was a little different.  Clayton's brain/ear MRI came back perfect, but the doctor suspected something might not be right on his Chest Xray and he'd need to come back for a Chest CT.  I worried, even though Chad, who took the call, tried to convince me not to.  I also knew, and had told the doctor during Clayton's appointment, that Clayton had been coughing really bad and congested.  He was on medicine for that.  The doctor suggested the cough was probably the guilty culprit, but we'd have to be sure. A cancer survivor can't take risks.
   Well, 10 days later... yes, TEN days, the scan happened.  That was yesterday.  After a week of going over the "what ifs",  a flat tire on the way to Cooks, a bunch of slow people both on the highway and in the hospital and a sleepless night waiting on that call, we learned today that apparently Clayton had a bit of a pneumonia, but he is now, in fact. .CANCER FREE.  I'm not sure how many people can be excited and blessed that their child had pneumonia, but I can and AM.
   Surprisingly waiting these last ten days has been interesting.  We didn't place the news on facebook simply because I didn't want my kids fielding 20 questions, and well, you know, sometimes people change the story a bit and I didn't want rumors starting that Clayton wasn't well.  For the sweet friends who noticed that we did not post a follow up and asked me, THANK YOU SO VERY MUCH.  Thank you for praying us through and for understanding when I was just kind of out of it or was not my normal self.  We are so thankful for our prayer partners. 
    As I was praying for Clayton and BEGGING God to keep him cancer free, I could hear the Lord BOLDLY say to me... "Kesleigh.. I have already told you that Clayton is healed.  He has been healed in Jesus name"  It was a reminder that sounded familiar to how I talk to my kiddos after the 5th time they've asked me the same thing. We have many new friends since Clayton's walk with cancer.  If you do not know his story and the several ways that the Lord absolutely healed him, please stop and ask me.  I will ALWAYS share the goodness of the Lord and the blessing He gave me in restoring my son to full health.
    So, today, as I'm walking around crying, or maybe smiling extra big, or if you drive past me in my car and see me singing loudly and boldly, I am in the midst of thanking the Lord for once again carrying us through a hard time, making Clayton new, and keeping His promise to us. 
   Hold your family tight today, friends.  Life is a GIFT.. and one we are not promised.  If you are healthy, or even if you have pneumonia, be thankful. It's all a matter of Perspective. 

    

Why do I do it?

  Two days ago, I changed my profile picture on Facebook.  I found a picture of a bald headed Clayton and followed the steps to change that picture to represent the "Go Gold for Children's Cancer" campaign as September is Childhood Cancer awareness month.  The next day I got a text from my sweet teenager daughter that simply sent a copy of my new picture and read "Why do you do this?"  Now,  I'm going to answer this because I know some of you possibly wonder, just like my daughter why I continue to remember and remind
others of what my three years ago looked like.  Shouldn't I just "move on"... " forget it"  " be thankful for his health" and go on? Here's why I "Do this".....
    On February 8, 2012 I heard "Your child has cancer".  You see, our family is not rich, not poor, not strict healthy eaters, not bad eaters. Our kids play outside. They do sports. Our home is clean.  We don't do drugs, heck, we barely drink alcohol.  We go to church most Sundays, we attend public school.. WE ARE NORMAL.. We are YOU.  That's the thing about cancer.. it doesn't care anything about the kind of person you are or aren't, it just happens.  And, when it happens to your child.. when it happened to MY child, I was forever changed.
   Friends, it is NOT uncommon.  I know that no one wants to hear that because it's easier to just go about life in the comfort of knowing "that kind of thing wouldn't happen to me".  I know that comfort because I once had it.  But, it happens.  I am telling you that at least once a month I am approached, messaged or questioned about a child that recently got diagnosed with cancer.  Whether it be online, in my hometown, in the church I attend or someone I know at the gym, it happens.
   That is why I still take a moment and advocate for more funding and more research to give more kids a chance, even if it is just changing my profile picture and making a donation.  My son lived, is thriving and if you know him, you know that he is NORMAL!  But, you also know that my heart beats a little faster when he says his ear hurts.  My hearts beats a little faster when YOUR child says his ear hurts, or his head hurts, or she can't get over that stomach flu because I have seen the "what ifs" play out right before my eyes.
   The treatment Clayton had was the treatment the children had in the 1970s.  There is just not much research being done for our kids.  Even though my son is completely cancer free, feeling great, acting like a regular 10 year old and has "moved on", I will NOT forget the kids who didn't make it, died too young, or are still fighting.  So, "Why do I do this"..because YOUR kids, YOUR future kids, YOUR grandchildren, and MY SON is counting on it...That's why.  #neverforget

He's always been faithful to me..

 Three years ago today,  our son, Clayton was being wheeled into surgery.  We had just learned days before that he had cancer.  We were at Texas Children's Hospital and were spending each day doing tests and procedures trying to determine how invasive this cancer was, where it was and what was going to be our plan of action. We were all emotionally DONE.  Through all the testing, we learned that Clayton had Hydronephrosis.  This has nothing to do with cancer. He was born with a kidney that just doesn't function as it should.  Most people never know they have this because we work just fine with one kidney, but because Clayton was soon going to endure months and months of chemotherapy, we had to make sure this kidney and it's inability to filter the medicine to come, would not cause life threatening problems as it was.
      After a day of pediatric urology appointments, an intern waltzed into Clayton's hospital room and told us that they would be removing his kidney the following day. I honestly never thought they would even consider removing his kidney! I remember just falling back into the chair behind me, asking the intern to please send the "real doctor" in, and trying to gather in my head what else this little boy could possibly have to go through.  Later that day, the head Pediatric Urologist came in, showed us scans that proved that Clayton's kidney was too weak, worthless and was not going to be okay to endure the medicine.  WE WERE DEVASTATED!  That blow was just one that I will never forget.  We called all of our family, most of which came down to be with us the next day, and we prayed and prepared our son for another invasive surgery and tried to explain what was happening to him next.
   The surgery was scheduled for 12:30 pm.  We were awakened at 6:00 am with a nurse saying, " The surgery has been moved up.  We're taking Clayton down in 15 minutes".  Wow!  Off they went with Clayton, and us following behind, to the surgery where they were removing his kidney.  I remember crying and just feeling devastated and asking God, What in the world?  Why in the world?  What more, God! After about an hour, we were waiting in the waiting room, crying, pacing, greeting our family, when another intern walked out in full surgical scrubs and said, "Castle Family".  Chad and I approached with fear, but ready to hear that it was over and Clayton was ok.  In a strange tone of voice, this doctor said,  "Mr and Mrs Castle,  We can't explain it, but the scans were incorrect.  Dr. Roth got to Clayton's kidney and all that is required to make it viable, is a small repair.  It is functioning and will absolutely not have to be removed,"  We looked at each other.  I remember falling into Chad's arms and saying, " Did I just understand him to say that Clayton is keeping both of his kidneys?"  You betcha he did! In a moment that I can't explain, that will never make sense to me and that I will never ever forget, I witnessed and lived a miracle.  A full blown miracle.  You see, we saw the scans with our own eyes, we understood them, we viewed them.  It was a true miracle and a presence that only God will be able to explain.
    With that little story, I say.. HE IS FAITHFUL to meet our every need.  Tomorrow Clayton has his scans to tell us that he remains cancer free.  I know HE IS FAITHFUL.. He goes before us.. He is holding us even still.  Please pray for us as we go tomorrow.  Pray for Christ to show Himself again and to remind us that He is who He says He is!  Whatever you are facing today, HE IS FAITHFUL.  We are living proof!

I wish I wasn't "AWARE"

First grade 2012

Add caption

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

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.
   

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.