Tuesday, June 26, 2012

Just pics and a quick update

 I just realized I never posted any pictures of Clayton ringing the bell to signal the end of radiation.. WHOO HOOO...What a great day that was.
    He is finally able to be home and not be in the car driving to Ft. Worth every day.  It is true, Six weeks flew by.  Praise the Lord. Thank you for your prayers.  We are so grateful for very minimal side effects.  He experienced a red ear and some loss of appetite, but he appetite is returning and he is starting to eat more.
     Last week we did lots of birthday celebrating.  We saw Madagascar 3 with some friends on Thursday.  As we were watching the movie, I received the call that Clayton's ANC was at 104!  Extremely low.  Average is 1800.  WOW... I panicked and we went home just waiting for a fever to break out.  God is so good to us.  Clayton remained fever free.  I'm hoping his counts are rebounding now and this week's report will be much better.
 He is still running around like a wild man.  This week he is thrilled to be in baseball camp from 9-11 in the morning.  In this Texas heat, it's exhausting, but he's loving it and wakes up with a smile every morning.  I'm so thankful for that little smile.Just today when I went to pick him up, I extended my hand to take his ball bag... he looked at me like "Whatever" , put it on his back, and walked off with the other boys.  He has redefined the term "perseverance" for me.
   Yall be in prayer for clayton and his siblings as they prepare to go to Camp Sanguinity  next week.  This is a camp offered by Cook Childrens for kids with Cancer and their siblings. It's located near us at Camp Jon Marc in Meridian.  I am expecting it to be a great time for Clayton.  Pray my older girls make it.  I'm almost sure their cell phones won't have signal out there.  WOW... what ever will
 they do?  Please pray for continued health over Clayton so that he can go to camp and enjoy himself thoroughly.  Please pray that my kids can learn and understand more about his trial and that they may be a light to another family group there.  Also, please pray for Chad and me as we are alone for 5 days.  We desperately need time together and peace surrounding us.  Please just pray for our family next week.
    Blessings to you all and we continue to thank you for all you do for our family.

Monday, June 18, 2012

Defying the Odds

 Just as Clayton's birthday celebrations ended, we have Father's Day.  I was just thinking about Father's Day 7 years ago and it reminded me of all that Clayton has been through.  Seven years ago on Father's Day we were celebrating in the Hillcrest NICU. I was thinking of how far we've come since we learned that Clayton was becoming part of our family.
     Let's start at the beginning. In the fall of 2004 Chad and I decided to take a cruise with 5 other
 couples.  We had three little kids at home and just making this trip happen was quite an arrangement.  My life was crazy with the little ones and Cort, as a toddler,  was enough to make me exhausted.  But, we decided that going on a cruise with friends was a much needed break.  We had a great time, enjoyed sun and sand and came back relaxed and ready to take on our busy toddler and little girls.
    About 2 weeks later, my breath was knocked out of me when a pregnancy test came back positive.  Oh my dear!!! How was I going to handle FOUR kids with no grandparents in town, no family... OMG!
 As the weeks went on, I got used to the idea and was excited about our new addition.  I was a little irritated at the pharmacetical company that soon announced recall on their birth control drug, but mostly, I was excited about the new addition.  However, I was constantly worried.  I just couldn't imagine it possible that I would have FOUR healthy babies.  Surely the odds were NOT in my favor since I had already given birth 3 times with no complications.  Later in my first trimester I started experiencing the signs of miscarriage.  Having lost my first baby to miscarriage, I knew that this was likely the case.  As I drove to my doctor's office to see a little heart beat, I just remember preparing myself for the worst and praying for the best.. Well, sure enough, the doppler rolled over my tummy and there he was.. Heart beating and looking as healthy as could be. He continued to grow inside my tummy even though my entire first trimester was rocky. He defied the ODDS.. He was still there.. PTL...
    Fast Forward to the end of my pregnancy.. His birthday, June 16,2005.  After an uneventful birth, there he was 8 lbs 9 oz.. as cute as could be.  While I was overwhelmed with the thought of four kiddos, my heart was overjoyed.  Praise the Lord.   Shortly after his birth, the nurse came in and listened to his heart and said to me... I'm taking him to the nursery.  I'll be right back .  She returned, but not with Clayton.  He was admitted to the NICU because he was born with a VSD.. a heart defect.  After several scary days in the NICU while tests were run, we learned that it was minor and would
surely close on its own requiring no surgery.  He was overseen for a year at Cooks, then given the release to do anything he wished to do with no followup... He defied the odds... Praise the Lord.
   As far as health problems go, this was it for him.  There was the one time we were heading to Disney on Thanksgiving Day at DFW airport and he got lost.  Three years old, a crowded airport, and two parents who each thought the other had him.. and he's gone.  After about 5 minutes of frantic searching, screaming and acting hysterical, which seemed like an eternity, he walked up holding his blankie, crying, escorted by a security guard.  SCARED ME TO DEATH... started our trip out scary, but there he was!! He defied the Odds.  I grabbed a luggage tag, completed it, attached it to his jeans, and off we went.
    Since that time, we are had full health, lots of great fun, and lots of crazy behavior problems too.  If you've never read the story of how a passerby thought a screaming Clayton getting "kidnapped" in Walmart by me, his MOTHER.. You should read it. http://www.kescastle.blogspot.com/2008/12/he-just-wanted-batman.html    Besides a few times like this when we thought we would kill him, he's had a very healthy happy 7 years and we plan for him to have many more.  While it doesnt seem like him getting Rhabdomyosarcoma is defying the odds, since only 500 kids are diagnosed a year, the fact that he's fighting it and winning like he is.. is certainly Defying the Odds.  Please pray with us that Clayton keeps WINNING!!

Saturday, June 16, 2012

He's 7 Happy Birthday, Clayton!

 So today my baby turned 7!  I can't believe how fast 7 years has flown.  He got an awesome surprise this morning when my brother and his family showed up as a surprise.  Yep... all but one of Clayton's cousins on my side of the family were here to help him celebrate his 7th birthday.  It was precious to me and precious to him.  11 cousins...all here!
   He started out the day playing another game where the Marlins pulled off another win.  He did awesome and got two hits.
After the game, he got a surprise visit from a nice limo driving him to USwirl for his birthday event.  He and some cousins and friends rode over together in style.  These pics aren't great.  I had friends taking pictures that I haven't seen yet..But, thank you to Mr. Doblebower for blessing Clayton with a limo ride.  So sweet.  As far as his USwirl event.  I AM OVERWHELMED by the love and support that our community has shown us.  Totally blessed by the sweet people that show up to wish my little boy a happy birthday and to honor what he's going through.  SO BLESSED.. There are more pics on my facebook page that I'd love for you all to see.  If you'd had told me a year ago that I'd be sitting in Uswirl at a benefit for my son who is in his 5th month of cancer treatment, I'd have told you that you were crazy.  I still can't believe we are doing this and that this is our lives.  It began like a nightmare that wouldnt end.  Now, it does feel like just our lives.  The knot in my stomach in the morning is just something I'm used to now.  It's just there.  The days that I wake up and dont feel it, those are the exception.  We are just waking up, crying when we need to cry, celebrating the victories as they come and thanking God for each great day. 

 Last week we were at Cooks for Clayton's overnight chemo and I decided to let Cort stay overnight with Clayton and me.  The boys were getting tired and I sat on Clayton's bed, held their hands, and prayed over them.  I was thanking God for helping us finish our radiation, for healing of Clayton's tumor and for continued good health through treatment.. etc.  As I said Amen and opened my eyes, I looked over and saw big tears down Clayton's face.  Just with a simple word, I said.. It's ok to cry.  With that, my little champion who rarely sheds a tear just sobbed and sobbed as I held him to my chest.  Just sobbing.  His little heart has had it.  He's tired and he just wants his normal life back.  As I was asking him what was wrong, he refused to answer.  Friends, the hurt of this little child and my inability to fix it, it just overwhelming.  I can't hear his thoughts, but I know who can.  Lord, please speak peace over his heart.  Please touch him today in a special way.  May his 7th birthday be a day he always remembers as a time for growth, healing and special growth to the little man he's becoming.  May this defining moment in Clayton's life be something that makes him stronger and a bigger warrior for the Kingdom.

Please pray for the next 23 weeks of chemo to go by quickly... for no new growth.. for peace over Clayton's heart,  for minimal side effects...for strength in clayton.   This momma wants to celebrate the tumor gone, take my baby, run the other way and never look back... but I can't do that for 23 more weeks.  Please pray us through it.

Wednesday, June 13, 2012

Uswirl Saturday!!!

Come celebrate with us! Saturday, June 16th....11:00-1:00. Come by Uswirl, see Clayton and wish him a happy 7th birthday. I'm sure he'll be glad to play some board games as well! Uswirl has kindly offered to donate a portion of the sales to Ronald McDonald house! We'll also have Clayton Wins shirts available. Hope to see you there!

Monday, June 11, 2012

Getting Summer Started

This summer has started off with a BANG.  We are finishing out radiation treatment.  I can't believe that the long six weeks is almost over.   Actually it went by rather quickly.  It's been hectic and crazy driving to Ft. Worth every day, but now we are on day 25 of 28!  I can't believe it.  Many thanks to the sweet friends who have driven me, talked to me, and convinced me that it's all ok.  I just pray with everything in me that this is the last week I will ever be walking into Dr. Nielsen's clinic...well, except for a few visits just to say hi over the years, of course.  Clayton has still done remarkably well.  His ear is quite red, although he doesnt complain about it.  It just looks like a really bad sunburn.  He honestly has not complained one time about it hurting.  His tummy still acts a little sick and his appetite hasn't been great, but he is still playing, going on about life and acts like it's just no big deal.  I'm the one worrying.  He's really been amazing.  Last night I was laying by him on the couch and was whispering very quietly in his ear.  He was answering all of my questions.  Yes, this was his ear that he's supposed to have significant hearing loss in.  I mean, it was very tiny whispers that were being answered.  It reminded me of that vision God gave me the first weeks of this experience of the Holy Spirit inhaling all of the sickness out of Clayton's ear and breathing back in fresh health.  I love that picture and am so thankful for it.
 This week my parents came to visit.  Mom came early in the week to see Kate's dance recital, which was gorgeous, and Dad came later in the week to drive mom home.  My sister is here now with her girls and we're all just playing and enjoying being together.  This is a big week, or should I say day for me.  As I write and the clock has stuck midnight, I am now a 40 year old.  Yep... my 40th bday is here.. today.  If you had told me last year on my 39th bday that I'd be driving my baby to radiation on my 40th bday, I would have never believed it.  But, so be it.  My sister is here to help me celebrate because it's her bday too.  We share a birthday 2 years apart, so it's always a special time to get to be together on our birthday.  Last night some sweet friends had a surprise party for me.  It was precious and a a night I will always remember.
   While family has been in town, we've been able to do a lot since Clayton's counts have been so high. We went to Hawaiian Falls on Wednesday, which was a very fun day. We watched baseball... His baseball team is still in the city championship and hope to bring home a victory this weekend.
I'm just praying that Clayton will be well enough to play.  He has inpatient chemo, aka..Big Chemo.. this week, which means his little body gets another hit of the big stuff.  He also has a birthday coming up on Saturday.. 6/16.  We are tentatively planning an event at USwirl on Saturday.  I'll let you all know the time later.  We'd like to have an open house for Clayton, and uswirl has offered to donate part of the earnings that day to Ronald Mcdonald House in Ft Worth in honor of Clayton's 7th birthday. I'll post more details in a day or 2.  We just have to see how he feels, and how the Marlins tournament plays out. But, we hope to see as many of you there as can come.  Come by, play a board game or Twister with Clayton and enjoy some yogurt.  Again, I'll post exact time hopefully tomorrow.
     Thank you all so much for continuing to pray for our family.  This journey is long, and even though his results have been amazing, Satan still likes to scare me about the "what ifs".  Funny how he gets into my mind and tries to make me fearful, wavering and unsure about the outcome.  Yes, it's scary and our prayer is that Clayton outlives his parents by a huge number of years... We are believing that.  Please pray for opportunities for us to share God's goodness in our circumstance, for boldness in our children to share His good works, and for a peace to pour over our hearts as we trudge forward toward the end of this long journey.   We have taken steps and planned some family trips this summer.  Please pray that Clayton feels well, continues to stay strong and will be able to enjoy the trips and outings that we planned.  We love you all so much and appreciate you all more than you know.

Friday, June 1, 2012

What I learned in Kindergarten

    So, today was Clayton's kindergarten graduation.  He did not get to attend.  While his friends were walking up the stairs dressed in their caps and gowns, shaking the principals hand while their parents clapped and cried, my sweet boy was receiving his 19th day of radiation.  He's totally unaware of what he's "supposed" to be doing.  Does this make me sad? You better know it!  BUT, I am reminded that he is still a Kindergarten graduate just the same and is now a First Grader.  I thought it appropriate to review some of the things my little man has learned his Kindergarten year.. not necessarily academic things. 
 Clayton with Mrs. Barrett... his beloved teacher

1-  Vocabulary... Cancer, Radiation,  Chemo,  Zofran,  Oncologist,  MRI, CT Scan, Rhabdomyosarcoma, tumor, port, transfusion, infusion,.....

2-  The meaning of true friends.  They stick by you through thick and thin, bald and sick, grumpy and crabby.

3-  A person's beauty is NOT judged by his outward appearance.  Hair is not all it's cracked up to be.

4-  No matter how bad a situation seems, someone always has it worse.  Be thankful in ALL things.

5-  Tears are ok... sometimes they're our only way to feel better.

6-  Patience... Instant Gratification is not always in God's plan for us.

7-  Perserverance... Continuing to trudge forward even when you know what's ahead will not be fun and will probably even hurt.

8-  Trust....Putting your life in the hands of educated people around you when circumstances are more than you can comprehend. 

9-  Learning that God hears.. He comforts .. and He meets us where we are... Even when we're 6.

10-  People are good...truly caring...giving of their time and resources... and prayerful.

11-  Life can change on a dime.  Love it, live everyday with all you've got... and appreciate the small moments that we all seem to take forgranted.

    I'd say Clayton learned more this year than any of his fellow kindergarteners.  I'm so glad to be able to trust in a God that hears the heart of a little 6 year old when he's too tough to share it with his momma... to know that His healing hand is on my baby even this moment.. and to be able to teach Clayton to share the goodness of God and his healing mercies for the rest of his life. 
    Yall pray for us as Clayton finishes out his radiation.  He has 9 more days.  His little ear is getting pretty red, although not really causing him pain, thank you Lord. 

Jeremiah 29:11.. For I know the plans I have for you, declares the Lord... Plans to PROSPER you and not to harm to... Plan for HOPE and a FUTURE...