Thursday, May 24, 2012

I'll take it!

 Tonight I'm sitting in a hospital room at Cook Childrens watching my little guy sleep.  It's been a super long day... honestly a long week, but I'm NOT complaining.  It only takes coming up here for a few hours to recognize that we have no room to be whining.  Yes, what Clayton is going through is terribly difficult, but friends, there are some truly hurting people just doors down. It's surreal.  I wish I new them better and could talk with them and pray for them.  The new Cooks floor is not very conducive to families visiting together.  The playroom is small and the WII machines... the most popular attraction.. are in each individual room, so there's no playing with a fellow patient.
    Clayton had an awesome visit with Dr. Heym today.  This is his Cook Oncologist.  Dr. Heym is so excited about Clayton's MRI results.  He told us today that he actually called the radiologist and all but accused him of testing the wrong area.  He said the radiologist confirmed that he took the old scan from Texas Childrens and compared it with Clayton while he was still in the MRI machine, and friends... it was GONE.. I'm still so excited.  Dr. Heym said it surprised him and he even said.. " God IS Good" which I added... ALL THE TIME.  You know, I think it's easy to say that when my son is laying across from me in remission... or NED.. no evidence of disease, but truly I know that we serve a God that is good is ALL things.  Sometimes I've questioned why in the world this stuff happens, but I don't doubt the goodness of God.
     I was just looking at Clayton sleep and was remembering the night at Texas Childrens when he came out of kidney surgery.  I remember how bad he was hurting and my heart just ached for him.  I was laying awake listening to my Iphone play... "Healing is In Your Hands"  It's a gorgeous song that reminds me that nothing can keep us from the love of God. He is everywhere and surrounding us constantly with his protective hand. WOW.. I sit here hoping the family crying next door knows that.  
    Clayton's doctor is so encouraged by how well he is doing on treatment that he gave us permission to have a " Normal" summer... Of course, we must check in before we leave the  area and report to where we'll be, but we're welcome to go somewhere as a family as long as Clayton feels like it.  Another mom had kinda scared me saying that Clayton's treatment would begin getting worse as we go along.  Dr. Heym denied that saying that Clayton is doing so well he doubts he will have too much of a different experience than he is now... and last week he was doing the monkey bars back and forth and swimming in the afternoons.  Dr. Heym also said that he expects Clayton to return to school in August.  We are crossing our fingers that the summer goes so smoothly, his body continues to respond well to chemo and he is able to join back with his classmates even during treatment.  WOW... I wasn't expecting that.  BUT.. we'll see.  I may not be able to let him go :).
   As for radiation.. today makes halfway.  We are 14 days into our 28 day regimen.  Many thanks to the sweet friends that have driven me there and back, have talked and listened and loved me through the experience.  We are blessed beyond measure.  As far as side effects from radiation, so far so kinda good. He is experiencing lack of appetite, so if you're around Clayton and he wants to eat something, the answer is YES PLEASE.  He did get big chemo today which makes round 5 of 14.  We're in the single digits remaining now :)... 9 more to go. Praying that the nausea is controlled and his counts continue to rebound nicely so he can enjoy his summer.  So thankful tonight and grateful for health.  ... The pictures above are of Clayton and me doing silly faces... and then below of Clayton completing his own profile and questionaire at the Radiation Oncologist office.  He reads off  the questions, clicks the correct response, hits print and barges through the office to the printer to get his own report.  I think he's leaving his mark for sure.  Last exciting point is that Clayton was offered Rangers tickets for his whole family.  We'll arrive for batting practice, meet Ian Kinsler (Cort did I get it right?) and get autographs.  We'll eat in the Diamond lounge and enjoy the game.  Thank you Cook Children's!  My family is soo excited!

Wednesday, May 16, 2012

Looking at what's right in front of me...

     I know it seems like forever since I've updated.  Honestly, I've not been my best self. I know that sounds crazy to most people since Clayton's tumor is gone and I should be jumping up and down.. Trust me.. I am thrilled..  I'm just tired, frustrated and struggling to be everything to all people...well, all people that I live with :)  I'm just telling you the truth.  I'm driving to Ft. Worth every morning for a 15 minute appt... I'm trying to get Clayton to eat..he has no appetite and in my opinion needs to eat more.. and I'm just convinced that Satan is trying to remind me of all that I am not.  A friend who kindly took my call while I was sobbing reminded me not to look at the long term big picture, but to look at what's standing right in front of me.  At that moment, Clayton was outside playing woofle ball with his brother and the neighborhood boys.  He was laughing, running, arguing and absolutely loving life.  What is wrong with me?  How can I dwell on what we can't do, when I'm looking at precious right in the face.
There are so many hard things that can overwhelm me.  I can choose to dwell on the future possibilties and what "might" happen during treatment, or I can look at what's right in front of me and appreciate it for what it is.  Honestly, we should all do that.  Life can be overwhelming and circumstances can truly steal our joy.  My joy has been stolen this week.  I've allowed Satan to creep in and steal it.  I walked through the elementary school today with a little boy smiling his bald head off, and I was teared up because he isn't there with his friends everyday. His drawings aren't on the wall... He wasn't lining up excited to tell me about his day.   Forget that he's really OK. He's alive, with NO tumor.  He's happy and feeling good. He sees the bright side. He's OK... why am I not? It's just a mother's heart I guess.  You all can pray with me that depression and sadness won't overwhelm me, but that the joy of what an awesome God I serve and the pleasure of having children in all their good and bads would consume me.  The gift of being a mother to these kiddos and the job that God entrusted me with would be appreciated and not such a scary thing that I can't stop to enjoy it.  Boy.. sorry for the heavy heart :)
The picture above is of Clayton's fox face.  The awesome staff at the radiation oncologist decorated it to be a fox per his request.  It's precious and he loves it.  He's doing well and we're counting own to the end.  20 more treatments to go.  It's hard to stand there and have a big door close that says extreme radiation with my son in there while I'm protected behind the door. VERY HARD.  God Protect him!  The other picture is of Clayton after his baseball game that named the Marlins first place in Midway Little League..on to city tournament they go.  Then lastly, Mother's Day at the lake.  The Slippery Minnow.  My cute boys.  Love those guys.  Yall continue to pray with us that the peace of the Lord would fill our hearts and minds.  That we know the greatness of his power.  That the Lord's hand would be on each of us. 

Monday, May 7, 2012

"From the Fullness of Grace..."

 I sometimes forget what he looks like... with hair.  This little picture was taken just about 2 months before his diagnosis.  We were arguing, complaining, frustrated and mad as a family because this was the day that Mom insisted we go get family pictures at the Suspension Bridge.  I remember Clayton being an absolute TOOT!  I somehow was able to help our sweet photographer capture this innocent Smile.  How sweet it is.
    A few nights ago I had a dream that little Clayton was walking in my bedroom to talk to me.  He took off his ball cap and there he was with a head full of hair, a healthy glow, and a very mature smile.  He was my little boy, a year from now, ready to take on the world after an amazing battle.  So thankful it is one he is winning.  John 1:16... " From the fullness of grace we receive one blessing after another".
 This past Friday was big chemo.. The 4th of 14.  I was able to convince Caroline to miss school Friday and come along for the experience.  I LOVED having her with me. So did Clayton. It was a precious time with 2 of my 4 together.  She was a lot of fun to have around, a distraction for Clayton and for me!  Thank you, Caroline.
   The Chemo experience is always uneventful in the hospital, then we get home and about 36-50 hours later, we have a sick stomach.  The problem is, Clayton doesnt complain.  He doesn't warn that he's feeling sick and doesn't complain that his tummy hurts.  He just suddenly is. He's in the middle of a restaurant or store and... well, he's sick.  Bless his sweet little heart.
   After his big chemo we had a much needed family day.  Chad's sister, Chata, had a big Crawfish boil in her neighborhood that we attended.  We spent the day swimming and playing with each other and cousins and just enjoying the good parts of life.  So thankful that we now have a perspective on life that allows us to grasp what's right in front of us and hold on to it... not argue it away. Well, we try not to. Precious times, precious moments that sneak away before we realize they were there. I'll admit, this experience is very hard on a family.  I sure wish it worked like it should, but we are all scared, nervous, on edge and juggling too many things.  It's an open door for Satan to sneak in and try to convince us that life's not good.    Again... John 1:16 " From the fullness of grace, we receive one blessing after another."

 Now for the radiation update... today was DAY 1 of , I believe, 27.  Chad went with me today and we were fully intending that Clayton would need to be sedated through the entire 6 weeks experience.  He is required to lay very still for the test.  It's only 10-15 minutes, but the mask he has to wear can be very scary and confining.  It's a situation that most adults have a hard time experiencing.  Literally his mask snaps to the table and he's trapped, laying there, just trusting all of the big people around him.

   Today as we were talking about what was coming, he was insistent that he not be sleeping.  He didn't want his port accessed all week, meaning he couldn't rough house, play baseball, go swimming.. all the things that remind him that he can be normal.  So, we talked him through it this morning.  Once again, I'm absolutely amazed by his brave spirt and determination to face the fight with all he's got.  As he was laying there with the mask over his face, unable to move, I was talking to him.  Just convincing him that he's a superhero doing anything he wants to do.  Asking him to just imagine himself in a far away place saving someone or solving a big mystery.  We were all commenting on his brave ability to lay there and I saw a big tear in his eyes.  No sobbing, no complaining, just one tear... a well deserved tear.. My heart overflows, friends... Overflows.  I will never be able to look at my little guy the same as I did 3 months ago. Somehow the whiny little brother description just doesn't fit him anymore.  He is amazing! He continues to face every new event with a trusting, open mind and continues to trudge forward.  It's a reminder to me that we put too much emphasis on the wrong things regarding a person's worth.  It's not about how hard we hit the ball, how fast we run, how many baskets we make... it's about our ability to face giants, perservere and truly admire the gift of life.  While I am still disenchanted with our circumstance to the point of tears every night, I do feel thankful for the opportunity to walk with my little guy as he faces the hardest situation he will most likely ever go through and see him, as a 6 year old, teaching me something. John 1:16 "  From the fullness of grace, we receive one blessing after another. "

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 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!

It's gone!

I'm currently sitting with Clayton in the Infusion clinic watching blood drip into his veins. His little pale face is soon to be pink again... At this moment, he's playing a video game and has no idea why the smile is on my face! Our doctor is out of town, but the nurse practitioner came in and very nonchalantly said that the MRI was normal. I say... Normal? it looks the same as before? She said, "no...there's no evidence of a tumor." The tears start flowing. I'm not sure why, but I wasn't expecting that. I guess yesterday was full of what seemed like bad news, so I just expected something worse. I didn't get a lot of answers today, but I did hear that the tumor is gone! Just to make sure everyone understands... Clayton has to finish his entire course of treatment. He's still in the fight against Rhabdo. There are microscopic cells and residual cells that have to be zapped so they will never return. Clayton is still in the fight, but he, through God, is winning!! Today's results prove that the chemo is working! Clayton was unable to make counts for big chemo yesterday. We are hoping to check him again Thursday and be back for big chemo Friday-Saturday. He also has 6 weeks of radiation beginning Monday morning. It's a long way till 42 weeks is up, but we've got a heck of a start. I'll add more later. I have a little man needing attention. I just wanted to share the news.