Wednesday, May 2, 2012

Clayton IS Winning!


Clayton proudly holding his bat signed by the ENTIRE Colorado Rockies Team!  Thank you, Mrs. Emily and Tommy Field!
 Well, we did a little bit of celebrating tonight, thanks to Mrs. Heather and the MARLINS.. who, by the way, are just busting it up this year and will likely make the city tournament.  The team greeted Clayton with a "Clayton Wins" cake to celebrate that that tumor is NO MORE!  I just can't express what an amazing gift that was to hear today.  I honestly was hesitant to share the news for fear that someone would walk up and tap me on the back and retract their statement.  I even took a picture of the MRI written report and sent it to Clayton's Houston doctor, Dr. Murali, and asked him to keep a copy for his records and agree with the Nurse Practitioner that it did in fact say NO EVIDENCE OF DISEASE.  He emailed back confirming the truth.... Clayton is NED.. This is awesome news.  He does, most likely, still have residual cells and microscopic cells that still have to be treated with chemo and radiation.  That's the stinky part! These don't show up on scans.  Another stinky fact, is that the reason we have to continue with the protocol is because there have not been enough children with Clayton's exact circumstance... the tumor responding so quickly after chemo begins...to test whether or not avoiding radiation contributes to a bigger possibility of recurrence.  I'm certainly not willing to risk my son's life to determine what the best protocol is, so we just go with the most certain, tried and true one.  Still, so very very grateful that the tumor is GONE!! WOW!! To GOD be the glory!
    While I am MORE than excited about the results of the MRI, I'm still discouraged by the road ahead.  We've gotten 10 weeks in, made great strides, and have rounded a HUGE corner, climbed a very big hill and reached the other side and now I see the other side still requires hard work, tough days and a very sick boy.  My heart is thrilled for him, but at the same time... still breaks for him.  Let's talk about him for a minute.  Clayton is having a tough time.  I'm just putting it out here... His behavior and personality have become sometimes unbearable.  He's mad.  He's just really mad.  He doesn't talk much to me about it, but tonight when I was talking with him about the great news and explaining the future, he boldly said... " I don't want to do this until Christmas.  I'm done with this."  Boy, how I wish I could just pack him up, run off to Disney world and come back on Christmas day.. Just pretending none of this exists.  Please pray for the two of us as we try to get through the rest of this together.  Pray that I can be the exact Mommy he needs right now.  Pray that he will share his heart with me, talk to me, and let me help him.  Hitting me, disobeying me, and making fun of me is not working and is making for a really difficult time together.  I'm just being honest and truly asking for your prayers.  My heart is so full of love for him.  I so badly want to make this situation ok and life changing for the better.

      As I celebrate,  I can't help but be so burdened for other people around me.  I just feel guilty for my miracle.  I know.. I know.. I am thrilled and can not tell you how great God is to have answered our prayers... to have made a statement of His faithfulness and goodness and to have blessed my heart and showed me His promises.  I was reminded today of the vision I had of the Holy Spirit breathing health into Clayton's ear.  I truly believe that Clayton was healed well before this MRI was done.  I know I doubted yesterday, I admit it because I was fearful, but I have always known that God is Healer.  What is hard for me is to see those around me that are more than equally deserving, that are faithful Christian people who have prayed just as hard as I have and who deserve their miracle.. but they're still waiting.  I will never understand it.  It's strange because at first I was asking God why I deserved the child with cancer... what did I do wrong to deserve this awful thing in MY son.. was it a past sin, have we been unfaithful.. what did I do??  Now, today I'm asking my God and Healer.. WOW... Lord, what did we do to deserve THIS?? This hand of healing that we've prayed so hard for.  It's unexplainable.  Please continue to pray for miracles for all of those hurting all around us.  Lord, have MERCY.
   
      I know I'm a little wordy tonight, but I just feel compelled to share something else the Lord reminded me of.  As I was sitting in Cooks yesterday, I began to panic during Clayton's MRI. The clock was ticking, and  it was taking forever.  I was told today it was because they were looking and relooking for the nonexistent tumor.  They had the first scan available and were using it to completely search his ear and brain.  So, it was a lengthy study.. Anyway.. as I was sitting there I saw a picture that was sent to me from my long time friend, Julie. It was a picture of her 12 year old daughter, Heather, standing with a group of classmates after she won a contest at school.  A contest that involved a lot of reading, memorization and hard work.  You see, Heather was born at 23 wks 4 days. She was given a very small chance to live and if she lived, her parents were told she'd have the possibility or, should I say, probability of many many problems.  I will never forget that moment when I learned she was coming so early, and I actually saw Heather just after she was born.  She was TINY.  She was taken to Cook Childrens shortly after her birth.  So, in that hospital, a tiny baby that had every odd against her, made it.  God performed a miracle in that precious little girl and left her whole, precious, smart and a very talented writer, by the way.   Just as I was sitting there anxious, I saw Heather's photo with her proudly winning a difficult contest, thought of her poor prognosis just 12 years ago, and  was reminded of the faithful God we serve.  The One who touched Heather in that very hospital. The one who knows our hearts, even if we're only 6 and acting out,  hears our cries and heals our scars.  He is Good.  He is loving.  He is OURS!
    Thank you to whomever donated this blood.  I will be donating my blood for Clayton at our next stay at Cook which will hopefully be on Friday.  We are hoping to make counts and get it over with and be one step closer.  Thank you all for your continued prayers.  We are amazed at the gift of faithful servants who celebrate with us, serve us, love us and cry with us all the time.  Seeing the Clayton Wins shirts around town is a huge blessing. We have more.. let me know if you'd like one.  I ask you to use it as a witness to anyone who asks.  Proclaim God's goodness, give Him the Glory and share with someone His gift to Clayton and our family.  Clayton IS Winning.. Praise the Lord.  Thank you Lord... Thank you soo much, Lord!

5 comments:

  1. Kes,
    We will continue to keep you guys in our prayers and focus on praying for peace in Clayton. I cannot imagine what either of you are going through and I won't try. However, we will pray God's strength for your during his acting out times and God's comfort for you and him both. All six of you will remain in our prayers for the time apart and pray the time together is one of happiness and joy. We love you all, and as always thank you for being you and writing from your heart.
    Isaiah 41:10 fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.
    Love you guys,
    Joy

    ReplyDelete
  2. Hi Kesleigh.
    I know I'm late to the game, but I'm rooting for the team.
    Your story is inspiring and completely real. I've had my time briefly being a care-giver, but it wasn't anything close to what you are going through. Yes. You feel guilty when your loved one triumphs while others are still struggling, and still there is the road ahead with all its uncertainties. The joyful part is that you are not alone, and the outpouring of friends and family members on your behalf is energizing.
    We love you and your beautiful family.
    Many prayers and well-wishes.
    Nancy Pahmiyer
    PS. I'm not Abbi in CC anymore. I'm Abbi in Waco. Need to change that profile name.

    ReplyDelete
  3. Part of my morning devotional had this verse....I couldn't help but think of you and your most recent post! Prayers are continuing!!!

    2 Corinthians 12:9
    "My grace is enough; it's all you need. My strength comes into you in your weakness."

    ReplyDelete
  4. Hey Kesleigh--I remember thinking the same thing when we had our miracle with Anna (told she had died and we would miscarry and then right before the D&C she was alive) During those 3 weeks we had people praying and Believing God with us for a miracle (and someone also was led to pray for us). I remember feeling that anguish for all of the other ladies I knew who had waited so long for babies or people who didn't get the miracles they had believed for (my best friend losing her mom), and "why did God choose me?" When I expressed those thoguhts, one of my friends at the time just told me that she really believed God chose certain people/stories to show His power to encourage the faith of the others. I don't know why sometimes He doesn't do the miracles for others, and I hurt for them, but I also knew the responsibility that came with Him choosing to do something in our lives. It was His story to begin with. All I know is that we are called to trust and have faith. And that is credited to us as righteousness. (Now, that same friend just delivered her miracle baby after waiting many many years!) What an answer to the divine appointment you guys had at the mall! It was obvious then that God was going to do something!

    ReplyDelete
  5. Praying for strength for a momma and strength for a boy to make it down the road in one piece physically and mentally. Christmas will be wonderful!!! Love and prayers, Amy Richardson Kiger

    ReplyDelete