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.
 

He makes ALL things new

 Today marks a year.. ONE year since Clayton had his last dose of chemo, one year since he slept overnight in a hospital room, one year since the nightmare somewhat ended.  PRAISE THE LORD!
   Last year on this day, we were finishing up at Cook Children's and ready to face Christmas and the new year a free kiddo.. and that's what we did. We just took life by the horns and have been living it.  So thankful.
   So much has happened since that day.  So many great amazing moments that before cancer happened, we would have taken for granted.  Clayton had a great trip to Disney..Clayton played baseball and won the city championship..Clayton GREW HAIR.. Clayton's bone marrow returned to normal, with normal counts.. the list goes on.  Our son played flag football, went on a cruise with no worry of illness, plays basketball, enjoys neighborhood friends, sleeps in his own bed without fear anymore.  HE IS FREE.
   It's taken me almost a year to accept those words.. we're free.  The nightmare of what Clayton went through haunts me everyday.  I have dealt with unimaginable fear of the cancer returning.  But, as many told me during the journey.. It does get better.  I am now.. a year later.. able to see that it's okay.  We're okay.  We made it.  As a friend told me last week, you never really understand  how God's grace carries you through until the unimaginable happens to you and you have no choice but to trust in HIS grace.  Then, He steps in and does what His word has promised.. He MAKES ALL THINGS NEW.  
    I have dealt with some guilt regarding Clayton because we have cancer "friends" who are not okay, who are not receiving God's healing, are not able to live free right now.  We love and pray for them daily.  We have "friends" who have had another family member diagnosed as well as their child, they have lost dads, they are still in treatment.  It feels unfair.  It pains me for them.  I have no answer for that.  I just have to know that God is in control.  HE WILL MAKE ALL THINGS NEW. To our friends still fighting, we love you and pray for you daily. We hold you very close.

   As I step back and look on our family's walk, I wanted to share some ideas on how we all can minister to people hurting.  See, as a family/mom/sibling/sick child, when you are in the mist of trial, you don't see things like you normally would.  You are stricken by sorrow, fear, hope, despair.. you are just not yourself.  The world kind of stops and you are emotionally different.  Please understand that when someone you know is in a trial, things that used to matter suddenly dont so much. We had close friends that let us down. It felt like they abandoned us. We had not so close friends bless us beyond measure.  We lost friends and we gained new friends.  I actually had a friend tell me they "Didn't have time to read Clayton's updates".. WOW... Then, we had amazing friends reposting and calling the community for prayer. We had random churches around the country sending us words of encouragement.  We had meals when needed.  I would encourage us all to see a need before it's mentioned and meet it. Listen when your friends need an ear.  Give grace to teenagers when they aren't themselves because they just can't see their mom cry one more day.  By the way, they won't tell you that.  They will paint a picture that it's all hunky dory... that they have no fear.. that they are perfectly fine.  They are not. Send a note of encouragement, tap the mom on the back in the store just to say we're still praying, and most of all, just love on them.
   Last week I was in Old Navy and the clerk asked the customer in front of me if she'd like to donate a dollar to St. Judes.  She said no.  At first I was mad, then I thought.. you know, I may have said no too two years ago.  If you have an extra dollar.. say yes. It's just little things that all add up.  My experience has certainly shown me how lacking I have been over the years in truly caring for people.  It's kind of nice now to take off the "we need you" hat and be able to meet the needs of others now.
   We are so thankful for all of you who held us up, prayed us through.. and still do, love on Clayton, cry with us, encourage our teenagers, bless my husband, rejoice with us in the victories and who boldly share the testimony that God created through Clayton.  HE MAKES ALL THINGS NEW!  And aren't we grateful!  Clayton's next set of scans will be Feb 5th.  He will then go every 4 months then every 6months, then once a year.  We firmly believe that Clayton will walk cancer free for the rest of his life... in Jesus name.

   

It's all good!

   I'm telling you what... I would never wish follow up scan day on ANYONE! Oh.. this day. Praise the Lord it is over! There is nothing and I mean NOTHING more gut wrenching then sitting by the phone and waiting anxiously for a doctor to call and tell you if you child's cancer is back or not.  It is a terrible sick feeling.
   Praise the Lord... our son remains CANCER FREE!  We are so thankful and so grateful we just can not put it into words.
   Today we arrived at Cook Childrens, with all 4 kids, at 10:45.  I was driving crazy and rushing hoping I wouldn't be late.  We got there at 10:50.. there was traffic, ok?? and then we waited and we waited and we waited.  At 12:45 we saw our doctor.  Two hours after our scheduled appt. time.  We had a great visit.  He said that if he didn't know Clayton's history, he would never even know he'd been through so much based on his blood work results and the appearance of his ear canal.  He says it looks great!  He also promised to call us by 6pm with the results.
   We took Clayton down to the MRI machine and as usual.. he handled it like a champ.  He picked his movie, Underdogs, and laid back as still as possible for 1.5 hrs.  He is a HERO, people.  Totally amazing.  I'm always so proud of his maturity.
   Well, we leave and 8:00 rolls around, and I hear nothing.  We are still waiting.. starting to feel sick, starting to assume the worst.  I've built up in my head that he is planning treatment options before calling me...Chad agrees that I should place a call in to the on call doctor.. I mean, if I'm not sleeping, surely he shouldn't be either, right ?  Turns out, our guy is ON CALL!  Whoo hoo... I leave a message and wait and wait.... no call.  9:00... I'm sorry.. I'm calling again.  By this time I'm just sure it's bad news.  I'm feeling sick, I'm crying, and it's just bad.  I call again.. within 10 minutes he calls and tells Chad the good news.  His scan looks identical to the scan he had last time.  No changes.. no masses, just some inflammation around his ear drum which is to be expected after 28 doses of radiation.  HE'S CANCER FREE.
    We are so thankful, but I do find myself frustrated that I worried so much instead of just resting in the Lord's promise that He gave me early on that He has healed Clayton and has promised good for him.  Fear is just sooo overwhelming when it comes to our kids.  Right this second, I'm listening to a little carefree boy singing in the bathtub.. happy and healthy.. Funny thing is,  to this moment, he has not asked me the results of his scan.  I love his childlike faith.  I love this kid! This momma is going to sleep thankful and glad today is over!

Happy 8th Birthday, Clayton!

Gorgeous sunflowers in huge fields near our house

Yesterday was the big day!  Clayton turned 8 years old!  So excited for him.. he's had another birthday cancer free and is stepping into a new summer in full health.
   This year for his birthday he decided, along with a little help, to ask for donations for Give Kids The World Village in lieu of gifts. It was so fun to see his friends and their families step forward and donate over $200 in Clayton's name to GKTW.  Give Kids the World is the darling little village made especially for Make a Wish kids.  It hosts many many children and their families each week to provide them with a special place to stay while they visit Walt Disney World and the surrounding areas in Orlando.  GKTW provided our family with an amazing villa to stay in, delicious meals, an darling atmosphere full of Disney and Universal characters, fishing, mini golf, carousal, nightly parties, arcade and most importantly to Clayton, FREE ICE CREAM ALL DAY.. even for breakfast! So thankful to have a boy who is willing to forgo his friend gifts to give back... and equally as thankful for the kids willing to give.

   This past week brought back some feelings that I wish never existed.  Clayton has been swimming in the pool every day and suddenly started complaining that water wouldn't come out of his ear. For Clayton, complaining is mentioning it once.  He does not complain.  Even at 8 years old, he's probably learned that a complaint means a doctor visit and worries from momma.  For this momma, I immediately started panicking, yet trying to hide it from Clayton.  After a couple days of watching him tug and pull, I called our ENT and took him in.  Turns out his ear was NORMAL, but did have infection in it.  It was cleaned out, drops were administered and this momma was breathing again.  Clayton was pretty happy to have that ear free again.  I have noticed that he doesn't use his right ear to talk on the phone, and possibly does have some hearing loss in his right ear.  Sometimes he repeats secrets a little off, but we were told he would have hearing loss there after all his little ear has been through. I'm trying to accept that it is ok, but pray for minimal loss at the same time.
     As we approach another week of summer, we are so thankful and so blessed and just ecstatic that our child had an eighth birthday.  Of course, we believe and have always believed that God is healer, the giver of life and our sustainer, but it becomes even more evident when we actually have birthdays to celebrate the life that the Lord has granted our sweet son.

Notice the red cheeks!  So thankful for the healthy look!

   This week Chad and I are going to Hawaii for a vacation together.  Our kids are scattered about.  Clayton will be staying with his cousin and also will finish playing in the City Tournament representing  Midway on the Blue Jays team.  The girls are in Louisiana and Cort is friend hopping for the week. Please pray for a refreshing time for all and safety in travel.  As always, please pray that our baby stays CANCER FREE forever and can live a long healthy life that allows him to walk in faith always, share the GREATNESS of the Lord and be an inspiration to others.  The Lord has big plans for this kid.  I'm So honored to be his Momma! Next set of scans, AUGUST 2nd! Believing for CLEAR!
       

See.. It's not just field day to me..

  A year ago today I woke up at Cook Childrens Hospital.  Clayton had been given overnight chemo and woke up feeling terrible.  This was one of the Post chemo mornings that he was throwing up and crying so loud from his room that the nurse was summoned without the use of the nurse call button.  I remember watching his sweet little bald head leaning over the toilet and praying out loud over him for the nausea to stop.  I knew that after the nausea quit, he was headed across the street for a radiation treatment that would make him feel terrible all over again.  My heart ached... everything in me cried and I am telling you, I hurt like I have never hurt before.  I remember committing to my older kids earlier in the week to drive back to Waco to be with them on field day.  I pried myself away from Clayton and left him in Ft. Worth with my  mother in law who was thrilled to be able to help.  I cried THE WHOLE WAY TO WACO and showed up just in time to watch Cort run in the relays with his class... still crying.

I remember sitting there watching the other kids participate and wondering if Clayton would ever get that chance.  My mind went where no mother wants it to go.  I started looking at the other kids and once again asking God.. out of all of these kids.. Why mine?  I remember being just plum mad that my son was at the hospital fighting for his life instead of enjoying his field day.
     Can I please share with you that today.. A YEAR LATER... not only was my son well and at school, like he has been all spring, but he was playing, running, being competitive.. full of life and energy.  My son was "just one of the kids".  He was sweating, cheering, running, pulling, and laughing.  My son was WELL.
   Today I sat wearing big sunglasses wiping tears from underneath.  So thankful.. beyond words.. that my son is miles away from where he was last year.  You see, for me, today was not just a hot track day where we go watch relays and balls being thrown.  Today was ANOTHER moment that I treasure, appreciate and will be grateful for.  Today was a day that reminds me of the miracle of prayer and healing... a HUGE day of thanksgiving to the Lord for restoring my son to full health.  The Lord promised me Good.. He promised me that Clayton would be good.  I am so beyond thankful that today, as I sat with mascara all over my hands from wiping my eyes...I was able to see first hand that promise from God in a way I never could have imagined last year.  I guess I'm not going to be a normal mom EVER again.  I will always be the mom that cries at the events... just thankful for the day... thankful that my son is "just another kid".. with a testimony.  

Cort's first swim in our new pool after a hot field day

Scans are CLEAR and PORTS COMING OUT!

 Just giving a quick update here. So happy to report that life at the Castle house seems incredibly normal. I love normal!  The kids are busy playing baseball, volleyball, cheer leading, dance squad and school...it's busy and puts many miles on the car, but I'm so thankful they are ALL healthy enough to do their thing!

   A couple of weeks ago, Clayton had a brain MRI which came back perfectly normal! Praise the Lord! He has no evidence of disease and his bloodwork was normal. HUGE thanksgiving! He will continue to have these scans every 3 months for 5 years. His oncologist says his chance of reoccurrence is slim based on the staging and location of his cancer, but it's still a possibility. Also, Rhabdo is a cancer that does sometimes show up again several years after remission...So, the black cloud looms over us, but we are thankful for the bright light of the Lord that shines over that black cloud. Today I am blessed with four healthy kids, and that is absolutely enough for me.

     One of my children recently asked me why I say "Isn't God so good"  after Clayton got cancer. To him.. this just didn't add up.  Why did Clayton get cancer?  Why do you say God is good when Clayton got cancer?  Shouldn't we be kinda mad that this happened to us? Why didn't God just heal Clayton before we even knew he was sick. Where was God when the tumor was forming?  Wow!  Hard Hard questions to answer.  Many of those things, I don't understand myself, but I know that God continues to stand with Clayton and all of us and gives us a promise of a GREAT hope and future.  For me.. that makes our God AMAZING! Some things we just don't understand and I believe we may never understand.  But what I will do is insist that our testimony remain firm that the Lord is our rock and our fortress AND our healer!

    On Friday, May 3rd, Clayton will have his port removed from his chest. It's an outpatient surgical procedure that should take 10 minutes. We are having it done in Waco, so we are hopeful that it will be uneventful, and put the final exclamation point on this journey. We rest in the hope that Clayton is cancer free forever and will never need a port a cath again!  May we never, ever forget the goodness of the Lord!

Class Field Trip

Easter 2013

   This weekend was such a great time.  It was the opening day for Midway Little League, where both Cort and Clayton played their first games of the season, and it was Easter.  Such a great time of year and a wonderful time to reflect on the testimony of God's goodness.
    I was just watching Clayton playing ball outside with his bestie, Reagan, and thinking about how he hasn't stopped once all weekend. He's been smiling, happy, just loving life... every minute of it.  I'm SO GRATEFUL. I just can not tell you how I look at my life and think about the gratitude I feel right now.  I guess it takes the darkest moments and the Lord walking you through them, pulling you out, and allowing you to see the small things in life that make a heart just over flow with thanksgiving about the things you used to just expect and take for granted.
     We are approaching Clayton's first set of scans this month.  They are on the 16th at Cooks.  He will have a Brain MRI with contrast and a chest xray.  Rhabdo has a bad tendency to travel to the lungs and he will continue to have chest xrays along with his MRI every 3 months.  When we get the news that he continues to be cancer free, we will arrange having his port removed.  His port has not been a problem for him, but it hinders him from being able to water ski or play on the lake, and requires him to head to the hospital if he gets any type of fever.
    Clayton is a kid who has totally put the past behind him, and doesn't revisit what happened and where he's been...at least not out loud.  His hair is back, his energy is back with a bang, and his heart feels calm.  I'm just once again BEGGING God to keep him cancer free.  It has almost been a year since we learned his cancer was gone.  Of course, most of that year was spent on treatment, but we still count it as time without cancer.  Please pray with us for clean scans on the 16th.  I can't even imagine having to tell Clayton that he's fighting again. Please consider resetting your alarm for 6:16.  We would covet your prayers. To ask for another request from an honest mom.. I have dealt with fear and anxiety my whole life. It has been a life long struggle.  Please pray that I will not fear the worst for the rest of my life, and that I will be able to walk with authority in the Lord's word that He wants Good for Clayton and the rest of us. That as soon as my stomach and heart approach fear, my thoughts will rest in the Lord's promises and the healing power of His name. Pray that I will remember the vivid images that the Lord gave me at the beginning of my nightmare of Clayton as a young adult.. healthy, smiling and free from disease.  Thank you so much for following us in prayer.  We are so grateful!
   

Defining moments and realities

   Well, it's been a while since I've written.  There is a reason for that, which I'll get to in a moment.  I thought it would be a good time to see a little compare and contrast here with my little man.  Here is a picture of clayton on his last day of chemo passing out the hats to all of the children.  I never, ever saw how bad he looked that day.  I guess my mom eyes had either disregarded it, or just looked past it to enjoy the victory that day brought.  The picture next to it is Clayton last weekend at Cort's baseball tournament... with great bone marrow, full energy, eyelashes, eyebrows and some hair.  He really has more hair than is shown.  The sun kind of washed him out a little.  So thankful that he is healing, and being brought back to full health.
     So, for the reason I have had to take a break... My heart has had so much on it that I wanted to share and write about, but honestly, I think we finished treatment, did Christmas, moved into a house, made the one year from diagnosis and looking back just hurt too much.  It's like if I just keep looking forward, then I can pretend that the past didn't happen and that we are free and clear.  As you all know, this is not the case.  We are certainly cancer free now, and we trust that we will remain that way, but the nagging voice of reality reminds me that the fear and truth still remain... that this is something Clayton and all of us will be facing for a good long while.  It's just so much easier to not revisit it, put up a wall, and act like the door to the past is locked and there's no key that opens it.  And with Clayton having his hair grow in and his color back, people don't obviously notice him as a "cancer kid"... which makes it easier to go around town and be normal...which is nice.  However, I will say that I still look for every single opportunity to share his testimony.  To let people know that Clayton is my little miracle and a picture of God's grace and healing.  In that way, I do feel sad that Clayton blends in because the opportunities seem fewer.
     As February 9th approached, I did relive the day that the clinic called and asked to have Chad and I come in without Clayton.  I remember the exact item of clothing I was folding, what I was wearing, where my kids were, how it felt when my knees hit the ground... oh... I remember every second of that day.  That day was a HUGE defining moment in my life.  Probably  the biggest.  It forever changed how I appreciate life, how I deal with my children, what I place as most important, what I truly believe about the Lord as my father.. healer... and His arms that hold me... it has forever changed me.. It also brought in me a fear so great... a hurt so deep.. and a type of pain that I didn't even know existed.  Somehow, when I look at this little face now smiling, shooting baskets, asking questions, laughing, arguing, playing baseball and all the things little boys do, I just want to see what's right in front of me... not whats behind and not even what the future MIGHT bring.  I just want to enjoy today and be thankful for it.   I want to just be happy and so grateful for my little lobster.. (Clayton played Larry the Lobster last night in his school play)... I just want to rest in today and continue to BEG God for a cancer free forever.
   I know we all have things in our past, situations that defined us and maybe not in the way that we want to be defined... Maybe we don't want to be that divorcee, the widow, the young mother..... The CANCER MOM..maybe we define ourselves by what we do for a living, the money we have, the house we live in... or the kids we're raising.   One thing I know for sure is that my God knew my defining moments before they happened... all of them.. He knew the precious moment when my husband chose me as his bride, He knew the moments my babies were born, He knew the moment my precious would face cancer. He knew.. He also knows our future.  He knows the defining moments to come.  He knows what Clayton's future wife looks like, what his kids will be named.. He knows.  I just rest in that today and pray and BEG for continued health and promises of good.   Please continue to pray for our family, for Clayton's continued health, and for all of the kids dealing with cancer and other terrible illnesses.  God is Bigger... Clayton is proof!