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

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