Thursday, March 29, 2012

Playing the Field..

     This week has been strangely normal.. and not something I'm disappointed about.  Baseball is back in full swing, and if you know our family, you know we do a lot of baseball.  Just going out to the game makes life seem "normal". 
     This past weekend Cort had a baseball tournament.  His team did outstanding and WON the championship.  These precious people who have become our extended family, got together and decided to play the tournament in honor of Clayton and his "battle" to be a "champion" and win against cancer.  The boys so kindly signed the winning plaque and presented it to Clayton.  SOOO precious. 

Clayton with all of the baseball sisters... It's fun to hear Cort talk to his baseball teamates and ask them which one of his buddies will become his "brother-in-law" when Clayton marries his little sister.

               Clayton proudly receiving the trophy the big boys gave him for being their inspiration.  I'll tell you what, this little guy is certainly a walking example of bravery, in my opinion, but I'm ready to give him a break and let someone else be the brave one for a while.  Too bad it doesn't work that way, right?  I took him to get his intown chemo treatment on Wednesday.  Even though this is not a BIG chemo, it still requires his port to be accessed and just fear for a little 6 year old.  Well, this week, he just got MAD. I mean MAD.  This was the first time since this whole experience started that he broke down and screamed and just let go.  He screamed the whole way home.  Once we got home, I let him scream it out. He was unwilling to let me talk to him, so I just walked outside on the porch and waited until he was done screaming. After I heard him calm down,  I came back in the house and sat down by him.  He wouldn't look at me or answer me, which reminded me that he's probably mad at me for being the driver that takes him to these awful places were people poke him and all that goes with that...  Anyway, as I sat by him.. with tears and hurt all over my face, I proceeded to talk to him.  Just to tell him how sorry I am, how I would do anything to take it from him, how I pray and beg God to make it easy for him, how unfair it is, how long it is and how I am so sorry that it happened to him.  He doesnt respond, but suddenly looks up and seems okay.   I honestly can't believe how a little 6 year old boy is doing what he's doing.  He has to be terrified.  Lord, please continue to hold him and be what I can't be for him. I can't describe to you how frustrating it is to be unable to "fix" this for him.  I realize we are doing what we can to fix it permanently for him, but the leading up is just awful.  Bless his heart.  He is only on week 6, and there are 42!  Lord, give us grace to move forward.  Please be for Clayton what I can't be for him!

    We are approaching his 6 weeks of radiation.  Please be in prayer for our family as we decide where to do this.  We started off being set on doing it in Houston, but after a great experience at Cook Childrens, we are praying about the possibility of doing it there.  We realize that what is best for Clayton is the obvious most important thing, but keeping life as close to normal is part of what is best for Clayton too.  Being in Ft. Worth would allow us to keep life a little more normal.  Please pray for us as we try to make a good decision that will give Clayton the best result possible.

     Thank you all so much for your love and support.  We couldn't be doing this without you all praying for us and pulling for us.  We are so blessed to have precious friends, families, neighbors.  Take a minute today to be thankful for your Christian family.  How beautiful is the body of Christ!

 The Lord brings PERFECT PEACE to those who are steadfast.. because They have trusted HIM...
 Isaiah 29:3

Wednesday, March 21, 2012

I've never liked Marathons

Clayton's Flair Hair... Love it..

    Most of you probably know that I love a great workout.  I mean, I'm all about going to the gym for an hour, sweating and feeling great when I leave.  Remember I said AN HOUR.. not much longer... I'm really not dedicated to long training and anything AT ALL that resembles a Marathon. The closest I've gotten to running a marathon was New Year 2011 when we were eating donuts at the Main Street Bakery at Disney's Magic Kingdom cheering for some crazy people that agreed to get up at 4am to run 26 miles through the Parks and were staggering in one at a time. I was perfectly fine sitting in that donut shop, eating my sprinkle donut twist and watching.  That being the case,  it's strange that I am sitting here feeling like I'm on the first mile of a HUGE marathon. One that I didn't agree to, one that I'm having to pay to enter, and one that's least desirable.. certainly not one with Cinderella waving at me from the Castle.  That's what this treatment for Clayton feels like when I look at it as a whole.  A LONG LONG marathon with lots of hills and valleys, a few water breaks, and A FINISH LINE!

 Last night Clayton and I drove to Cook Children's to do another overnight chemo. The 2nd of 14.  I let stress and anxiety get the best of me and really spent the whole day yesterday depressed.  Just dreading the tough chemo, the hard week that follows, the fear of another fever, and figuring out how to leave 3 kiddos and a husband behind...again.... and make the best of a hard situation with Clayton.  Honestly, it's overwhelming and depressing and sometimes just deserves a really good cry. So, I have the good cry.. go to bed with  a headache.. and wake up putting one foot in front of the other.

    As a delightful surprise, today wasn't so bad.  We met another great doctor here at Cook Children's, spent some awesome time alone with Clayton, had lots of laughs and received another round of chemo... which puts me one week closer to the finish line. The finish line being close to Christmas... I honestly don't think I'll be frustrated at Hobby Lobby this year when they put their Christmas stuff out in July. Heck, I just may start my Christmas decorating early.  It's hopeful and exciting for me to think that by Christmas, my baby will be walking away cancer free and treatment free in Jesus name... We're believing it, Lord!

     The doctor here at Cook confirmed a great prognosis for Clayton, was very encouraging and was excited to work with us.  He, like the others, clearly loves what he does.  We once again feel very loved and cared for. 

   So far tonight, we have not had nausea and are praying that with the anti nausea meds, we'll be ok this time.  Believe it with us.  Pray that this marathon has minimal bumps in the road and a gorgeous finish line that will leave our little winner bragging on his trainer... our Jesus.. HIS Healer.. for a lifetime. To God be the Glory!
   Yesterday I couldnt get this verse out of my mind.  And as is typical of our Lord, He put it on the mind of a friend, who sent it to me... giving me a double dose of His truth for me yesterday...
Hebrews 12:1-2
Therefore, since we are surrounded by such a huge cloud of witnesses, let us strip off everything that weighs us down, especially the sin that so easily trips us up. And let us run with endurance the race set before us.  Let us fix our eyes on JESUS.. the author and perfecter of our faith, who for the joy set before him, endured the cross, scorning it's shame, and sat down at the right hand of the throne of God.
As a side note... if you ordered a tshirt, they should be in any day.  We'll be letting you know how to pick yours up.  If you haven't ordered one, but want one... YEAH... send a message to me with your size, and we'll put you on our second order that we're placing soon.  Thank you all for your support.  We LOVE you all!

Thursday, March 15, 2012

When life throws you lemons....


The past few days we noticed Clayton's hair just falling out. No, it was not gradual, it literally started shedding like a puppy dog. Honestly, I was dreading this. I just have been so nervous about his little bald head.  I guess thinking that once I saw it, it would just make this journey so real.  AND.. of course, I was nervous about how HE would handle it.  But, today.. it had to be done.  The hair had to go.. so we loaded up and went to Great Clips.  As the hairdresser started shaving his head, I saw that he was going to be completely bald.  So, quickly I hollered at her ... " Let's leave a Mohawk!".  She just smiled and left a little strip in the top, gelled it up, and he was in LOVE.  Of course, I know the mohawk will also be short lived, but at least for today, it left a little boy smiling.. and several kids in the waiting room jealous as their moms rolled their eyes at me for being the "tacky" mom that would allow her son to look like that.  All of them totally unaware of my motives.  The looks continued as we ventured to Walmart to pick up a few things.  There were several elderly people that were rolling their eyes and looking so disturbed by the hair.  Just a reminder to " Judge Not..."I remind myself of this as I was also disturbed by their willingness to go out in public in slippers and pajama pants :)  Just sayin... Just sayin.

     Because I knew the hair was going, I asked sweet Heather to take a few family pics in the bluebonnets.  I love bluebonnet pictures.  So, we marked to beginning of our journey with some cute pictures in the bluebonnets on a gorgeous Spring night.

Today we had little chemo that we were able to have administered here in Waco at the Cooks Satellite Clinic at Hillcrest.  What a blessing!  Our friend Temi was able to do it, and we also met one of the Cooks doctors who happened to be in clinic today in Waco.  How awesome!  He is friends with the doctors from Texas Children's, and they all seem to be happy to work together to give Clayton the best care possible.  The idea that they rise together and work to help us is humbling and precious.  It's obvious they all truly love what they do. Clayton's blood work today shows good White Cell counts among other good things, and the doctor says we should expect Clayton to have a great week.  He'll do his next overnight chemo in Ft. Worth at Cooks on Wednesday/Thursday of this next week. We are using Cooks instead of Tx Childrens this week  for convenience.  1.5 hour drive is a blessing compared to 4 hrs.

     I was thinking earlier today how time is flying.  A month ago today I was in the waiting room at Texas Children's while my baby was in the MRI machine. It was probably the darkest day of my life.  I was literally on my knees in front of all the waiting parents crying and begging God to give us a clean report.... a good word... a great prognosis. I was completely unaware of anyone else around me who was watching me.. just me and God..lots of tears.. and the floor.  A month later, we're actually ok.. We're surviving.  We're taking one day at a time, and it's okay.  We have a long road, but we're on it.  We're moving forward.  We're laying it at the feet of Jesus, being Held and expecting great things.  Our son is smiling most days, we've felt loved like never before by our friends, and we're confident that God is doing an amazing work in our little guy. The Lord is sustaining us.

 AND... this little bald head is not as scary and frustrating as I expected it to be. " He's Bald... But He's Living"... quoted from a sweet Cajun mom in the Texas Children's Playroom. As Clayton's little shirt says below.. " Life Is Good"... Embrace it!

Sunday, March 11, 2012

Home for Spring Break

After experiencing two days at Tx Children's we were dismissed to go home. YEAH.. but not after we once again surprised the doctors. On Friday morning the team of doctors came in and told us we'd need to run Clayton's blood labs both Friday night and Saturday morning, so we'd need to stay another night. I wasn't big on this idea since Clayton was playing and feeling so good, so I asked the team " What if his counts go way up today? Do we still need to stay?" I was asking because we needed to organize the kids at home. The team said, smirking.. well, that's not likely, but of course if his counts are great, we'll let him go, but don't expect it. It's unlikely. So, we began to plan for our kids, but I still continued to ask the nurse what our counts were. Finally, after my persisting, he rechecked and the results were in. The team came in and exact words were, " We weren't expecting THAT..., but his counts are perfect, go home" Makes me laugh because I WAS expecting that... Love it! As we were leaving, I said to Chad, imagine what they are going to say when we go for radiation and the tumor isn't there?? We are WHOLE HEARTEDLY praying that God is and has been working to rid Clayton of his tumor AS WE SPEAK. Please pray with us!

Clayton did have a chemo treatment while in the hospital. It is what we call Little Chemo because it's just one drug and not all three together. This one didn't bother him at all. I think these outpatient chemos in between will be much easier than the BIG chemo in the hospital. We are also scheduled to have his next Little chemo on Thursday here in Waco at the Cooks Satellite Clinic. Turns out the Cooks Oncologist is in Waco on Thursday. HURRAY.. AND.. our awesome friend from church, Temi, works at the clinic. God is so faithful to continue to offer us a HUGE team of people that truly care about us and Clayton's journey to full health.

We had a GREAT surprise this week in that my Best Friend, Shannon and her son, CJ flew in from San Francisco to spend a few days with us. I LOVE IT. The kids are home, Clayton is feeling GREAT, AND .. I have my Bestie here. So thankful for an awesome distraction.

So, here I sit, on a fun Sunday night listening to Clayton play Wii with his brother and friends, eating pizza and loving the sound of his little voice and even his ability to argue with these little boys who love him. Beautiful song service at church today reminding me that the biggest blessings often come through tears and hurts. Trusting that God has a blessing in store for our family that we won't even be able to understand.

For the record, I am scared.. terrified... and I have the worries you only imagine a mom in my position has. I do remember that " God has not given us the spirit of Fear, but of power, love and a sound mind. " I DO know that, but I AM scared. I do have a knot in my stomach, and I DO feel fearful. I would be putting on a dishonest front if I said I didn't. I hear the word "RHABDO", a word I never even knew existed 5 weeks ago, and my heart stops. Please pray that my "spirit of fear" that lurks a couple of times a day, would be reminded that GOD is BIGGER!

As a fun piece of I'm listening to the boys play wii, I hear one of them say, "Clayton, that's not fair. You're NEVER gonna lose because those boys at the hospital taught you how to beat us." Guess hanging out at the hospital has given him ONE advantage...

Thursday, March 8, 2012

Our First Ambulance Ride

So today is March 8th and I'm supposed to be in my car, with my whole healthy family, listening to laughing and arguing, headed to Crested Butte for a week of skiing with friends. A little better than a month ago, I was shopping for ski stuff. How things can change in a breath! So thankful for travel insurance. But here I sit, updating a blog that should never even have to exist.:).

Yesterday Clayton woke up holding his tummy and groaning most of the day. It was hard to tell if he was really sick, or just tired. He tends to be a little whiny these days, and deservingly so. I checked his fever throughout the day, and he had none, so no worries. By 7:30 the story changed. He started running 102. We had been told that if he gets a fever, we run, not walk to our closest hospital.

Fifteen minutes later we were at Providence. We went there just because we thought their ER would be quicker. Bless their hearts, they are absolutely precious there and so nice, but not the pediatric hospital that had spoiled us for the past three weeks. We were totally blessed by the care we received, but unfortunately, it wasn't specialized enough for our Texas Children's Hospital doctor to allow us to stay. After reviewing Clayton's bloodwork, we determined he was very low with his White Blood Counts and Neutrapenic. This requires 48 hrs of IV Antibiodics.

So, by 2:15am Clayton and I boarded a lovely ambulance with two awesome grandads from Limestone County and began the journey to Houston. Clayton thought it was pretty cool, even though at this point he still wasn't feeling very good. I, however, did not think it was so cool because I was so tired and a bench in a bumpy ambulance was not my idea of restful.
We arrived at Tx Childrens around 6:15 and stayed in the ER until 12:15 when a room on the Oncology floor opened up. Clayton ate a McDonalds Happy Meal and seemed better. No more fever at this point.

I had a first today and hopefully a last. I was helping the nurse hold Clayton's hand this morning while he drew blood from his Port. I was standing there one minute, and on the floor the next. I guess I was tired, hot, hungry and just plum done. AND, probably watching the blood flow from my screaming boy was the final flaw. The nurse kindly helped me into a chair, gave me some food, and better I felt.

So, here we are tonight back at Tx Childrens. Hanging out.. watching the movie channel, organizing the kids back home, and chillin hoping to go home tomorrow. I can't help but feel sorry for the kiddos who are still here from when we left last time.

Last night in the car on the way to church before the fever occured, Cort was working on his AWANA study and answering questions in his book when he looked at me and said, " Mom, Do you think God is as powerful as we think he is?" Of course, I answered, Yes.. He said, "Then why can't God just poof His hand and make this cancer go away in Clayton so we can all be back normal. If cancer kills people, why can't he just make it go away?" Wow... How do you answer that one in 9 year old terms. Obviously, I reminded Cort that God can do that and we are trusting Him to heal Clayton and provide us all with a testimony of His good works. Unfortunately, I don't think that explanation was enough for a little boy who wants his little brother back, his dad at baseball practice, his mom's eyes tear free( I'm really trying), and his sisters to calm down. Hard questions.. out of the mouths of babes.

Thank you all so much for your support and prayers. We are blessed and honored by all of you who love our family and have continued to pray for us. You are all wonderful. Please pray that we would be cleared to go home tomorrow, we'd stay fever free for a nice Spring Break, and of course, for the tumor and any other cancer in Clayton's body to be just bombarded with a combination of Chemo and God's awesome hand and
be diminished. We are trusting Him for it.

Saturday, March 3, 2012

Making it work

We were so excited to be home Thursday night. We had an interesting ride home with Clayton nauseated and not feeling great. So, after his first chemo treatment, he did have a few bouts of nausea. We are learning exactly what anti nausea medicines will work best for him. It's strange, because he'll be just fine one minute and then throwing up the next.

Friday morning he was very sick. Later in the day he was feeling better and even asked to go to the school carnival. I reluctantly agreed, but held his hand and walked with him and my hand sanitizer the entire night. I could tell he was glad to be there, but was completely overwhelmed at the same time. He saw lots of friends, teachers, and I was able to see lots of friends who I've missed. We are so blessed to have such an awesome support system.

Today, Saturday, He had a better day. He did have an episode of nausea in the car after he thought he wanted Shipleys, but after a rest and a great shower, he ended up having a great day. I was outside calling him down off the slide by late afternoon. Last thing we need is a broken arm from climbing over the top of the monkey bars. It felt good to see he and Cort play a little. He's learned that his siblings get squeamish with the vomiting, so he's figured out how to fake throw up just to make them jump and run. It's really kinda funny.. typical Clayton.

Clayton with Dr. Murali.. his Oncologist. Please pray for him by name as he heads up Clayton's team.
Back with big sis

Driving around town today, attending the school carnival and getting back to reality a little has made me realize what all we take forgranted. How much I really loved the sight of my little kindergartener throwing his backpack on and running toward the bus, something he won't be doing for awhile... watching little boys file out of their cars for ball practice...seeing neighborhood kids all running around together talking about where they're going next. Makes me so excited to think of the day that my little guy will be back doing those things... healed, changed, stronger and ready to face the world. Lord, please give me that day... give HIM that day. We trust you for it.

Tonight as I was praying over Clayton I caught myself bargaining with God. Begging him to give me a chance.. a LONG chance to create something amazing in Clayton that would be used for His glory for YEARS. Begging him to heal him and give him.. and me.. a chance. Is that wrong.. begging God? Cause I'm BEGGING God to heal Clayton. Please continue to pray that Clayton's treatment plan works, and for the side effects to be light. We love you ALL.