Thursday, August 30, 2012

Just One of the Guys...

 Well, my Clayton got his wish!  He started school yesterday.  My little guy walked into a first grade class, sat in a desk and did his work.  Thank you, Lord.  He was SO excited.  I think for him he just felt like "one of the guys".  Bless his heart, as he walked in, with his head held high and a pep in his step, I saw kids and parents watching him, quietly  whispering to each other, smiling at me and offering lots of high fives.  It's hard to fit right in when you're the lone bald kid on campus.  I could not be prouder of my boy for taking it in stride and just being so thrilled to go to school that it doesnt matter to him. My favorite thing of the day was seeing Cort walk to Clayton's desk, lean down and whisper in his ear " You're gonna be ok.  I'm gonna miss you."  PRECIOUS!

 One thing about Clayton, he takes a great deal of pride in being a smart kiddo.  He's able to read at a much higher level than 1st grade and his ability to spell and use vocabulary is exceptional.  His favorite word the past couple of weeks has been "theoretically" and he's very good at arguing his point with very well thought out opinions and ideas.  So, for him to be at school shining his smart light, he's very happy. Where many kids find their pride on the baseball or soccer field, Clayton takes great pride in his schoolwork.  Nothing wrong with that.   
Yesterday was also his second flag football practice.  Because he has not had big chemo in such a long time, he's feeling good and back like his old self.  He was a champ as quarterback and running back yesterday. thankful that he could be out there playing.
   Which leads me to last night.  Clayton did not make counts to do his chemo Monday night.  This was not necessarily bad, as it allowed him to start school and experience the fun "firsts", but it did delay him to have chemo tomorrow.  I'm 99% sure he'll make counts for tomorrow because he was borderline on Monday. I have committed as Clayton's mom not to "sneak up on him" regarding his treatments.  I always want to be honest and forthright with him because that is only fair.  Last night, I was preparing him for having his blood drawn today and having big chemo Friday.  I was explaining to him that he would miss school Friday and we'd go to Cooks for his overnight chemo.  Well, my sweet boy started quietly sobbing, crying, begging me to not take him.  Begging me to let him quit and just be "one of the normal guys" that gets to stay home.  He is DONE. I told him I'd give my whole life to make it stop for him, but we have to push through so he can be cancer free forever.  He's 7.. old enough to understand that he's going to feel terrible AGAIN for awhile, but young enough to not see the big picture.  It's absolutely gut wrenching!  Clayton, when you're old enough to read this and remember, please know that I am hurting right here with you and begging God to see you through.  I'm so sorry!
 For tomorrow, I'm going to drive him to Cooks, get him settled in then switch off with Chad who will stay overnight.  Kate is having her first ever football game to dance in, and Caroline has volleyball tryouts.  My heart is getting pulled many ways and either way, I lose because I can't be with everyone.  Chad wants to spend the time with Clayton, so I'm going to brave leaving him overnight.  Please pray for Clayton, that this round would be easier on him, and will quickly be forgotten. Pray that it's a sweet time with his Daddy too!

  I just feel like we can't complain.  Our summer as a family was amazing...Dance Recital, Cousin Visits, Finishing Radiation, Clayton turns 7, Mom turns 40, Kate went to San Francisco, Boys did 2 baseball camps, Camp Sanguinity, Camp Thurmon day camp, South Padre Island, Cheer competition, Dance Camp, Ranger Game,  Indianapolis, Baseball tournaments, Youth Camp, Hawaiian Falls, Volleyball Camp, and lots of sleeping in... all of that in the midst of several Big Chemos.  I do see God's hand on our family and holding us up, often pushing us forward when we cant move.

     Im going to ask for specific prayer right now for our little friend, Reid.  His parents were originally told that he also had Rhabdomysarcoma.  He was taken to St. Judes to learn that he has Spindle Cell Sarcoma.  His parents have been told that he may need to have his eyeball and the eye orbit removed.  Precious Reid is 3 years old.  This is a gut wrenching horrible decision to make as parents for your child. Please hold them up and pray for this precious family to see a miracle performed in their son and for the baby to be able to have his eye forever!

Thursday, August 23, 2012

They're Still Clear

  Well, yesterday was a GREAT day for scans.  Praise the Lord they all came back clean as a whistle.   I was so proud of Clayton as he was able to do his MRI WITHOUT sedation.  To understand this, imagine a busy 7 year old boy laying completely still for 50 minutes.  While he was able to listen to music, the machine is still incredibly loud...So loud that I was required to wear ear plugs while I sat in the room with him. It makes sounds similar to a fire alarm going off in a high rise building, then suddenly switches to the awful sound the tv makes during a Public Broadcast Announcement.  But my son was so amazing and brave.  I'm constantly in awe of what he is able to do.  I guess having had such a busy week with him, it surprised me.  Busy meaning.... HE was so busy jumping around the house playing and misbehaving.. just like any 7 year old boy.  It reminded me that he really is capable of being still!
      While I was thrilled about his scans being clean, and honestly nothing can take that excitement away... I was so disappointed to learn that his ANC, that's basically his white count, was so low that he couldnt do his chemo treatment.  It's so sad because it pushes us back another week.  In chemo language, this is like repeating week 24 over because on his chart, he has not completed the protocol for week 24.  Of course, Clayton was THRILLED to leave with no chemo.  In fact, as Chad told Clayton about his scans showing NO cancer, he practically jumped out of his seat proclaiming... " Does that mean I'm DONE????"  Bless his heart, and Daddy's for having to say " I'm afraid not, Buddy".  Six more treatments.  UGGHHH... I know it will come to an end, but I hate what these treatments are doing to his bone marrow and his body.  I'm so discouraged that his counts are continuing to be dangerously low.  So, we will try again on Monday and if they are still low Monday, we'll try again Friday.  This is the first week of school and terrible timing for big chemo, but Hey... is there ever GOOD timing for Chemo.. NO WAY.. Right now  because of delays it looks like we'll be done the 2nd week of December.  I am praying that Clayton's best Christmas gift will be NO chemo and a fresh start to a new year.

    Today I was thinking about how this journey with Clayton has changed us as a family.  Sadly , it hasn't done what I pictured it doing. I had visions of the six of us sitting around the couches holding hands praying for Clayton... I had thoughts of my kids appreciating things and moments more, I had moments where I dreamt of my kids saying only nice things to one another, playing fun board games and laughing all friendly....  Well, NOT SO all the time..Just this week I've heard, "Shut up, Stupid"... "Why are you an idiot?".. "Close the door, Dummy"... MOOOOMMMMM! He won't get out of my ROOOOMMMM"....  "Get out of my way, Jumbotron"... I mean.. the list grows, unfortunately, but it's all true.  Sometimes I'm disappointed that we didn't suddenly get this magic air around here that brought nice, kind, always Christian vibes brought on by a cute little bald guy.  Well, it turns out that a cute little bald kid doesn't always bring out the best in us.  It brings in lots of stress, anxiety that is not always openly spoken of,  fear, jealousy, frustration... you name it. While I know that the Lord has certainly changed me, I'm not always sure that as a family we are seeing the HUGE difference I pictured.  I do know that we have had to put SELF aside, realize that it's not always about fair and most importantly, we've learned to place total faith in the Lord and trust Him for Good.  We've answered hard questions about "What Ifs" and "Why does God allow such things".. We've met and appreciated other kids in boats much rockier than Clayton's and we've talked a LOT about not knowing what the future holds, but knowing who holds the future.  I just continue to pray that even as the kids are calling names and putting each other in headlocks... and no.. I'm not joking...they really are putting each other in headlocks and requiring the other to "tap out"... I can only hope that as we look back on this summer and these days that they'll firmly remember God's hand on Clayton and the precious promise of His goodness to our family.  

Tuesday, August 21, 2012

Scans and Chemo

     So, after a really great couple of weeks, we've reached our big day.  Tomorrow Clayton is scheduled for Big Chemo and Scans.  On Clayton's "roadmap"  which is what the schedule for his treatments is called,  we are officially done with phase two leaving only phase three left. Hallelujah!  After phase 2...week 24, he is scheduled for a MRI and a cat scan of his chest.  That will be tomorrow!  Please pray for us as these machines scan his little body for any signs of cancer.  I have a tremendous peace about tomorrow's scans, which I can only thank the Lord for.  I believe any of us would agree that anytime one of us is being scanned for cancer, it's terrifying.  We have 5 years to get used to this feeling, and honestly, I can't fathom it ever being something we get used to.  Please pray us through tomorrow for calm hearts and GREAT results. We are told that we should get the results at our scheduled 1:00 appt.
       After the scans, Clayton is scheduled for his 9th overnight chemo treatment.  This would be 9 of 14.. We're getting there!!!  Please pray that his white counts will be high enough for him to get the treatment while we are there. Last week his white count was really low, but these things are unpredictable, so I just never know what to expect.  His actions would tell me that he's UP and ready to go, but then I'm reminded that last week he was playing kick ball with the neighbors just hours before ending up the hospital with NO white counts.  So, with this kid, there's no telling.  It would bless me if as your alarm goes off at 6:16 this evening, you would please pray that his little bone marrow is doing the best it can, helping him make counts allowing him to stay on schedule for his chemo treatments.  We are so ready to be done with this.

     These last few weeks of summer have been great for our family.  We've had some lazy days and some time to just relax and take a breath before the busy school season starts.  We've gone to the movies, gone out on the boat, gone to the waterpark, slept in, and just played and enjoyed being free.  Clayton has had a great two weeks.  It honestly makes me so sad to hit him with big chemo again, but I'm given no choice.  He is so excited to start school, and has even signed up for flag football.  I'm sure we'll be hit or miss with our attendance, but the fact that he is begging to play speaks volumes for his ability to enjoy life to the fullest.

     Yesterday we received our first call from the Make A Wish foundation.  It's a little surreal to be receiving that phone call.  I've seen these groups of families at Disney and always just felt so bad for the little person being granted the wish.  How weird to know that this time it's our family.  Weird feeling,to say the least.  How blessed we are for the opportunity to go that will probably take place after treatment is over in January.

      Thank you for your prayers tomorrow and in the weeks to come.  We are so blessed by you all.  Thankful for our Lord that is walking beside us... often carrying us... and holding Clayton close.  So thankful for those of you that are whole heartedly praying us through.  We are forever grateful.

Tuesday, August 14, 2012

The Family Punching Bag

        This is one of my all time favorite pictures. I love what it depicts.  Clayton venting his frustration on MY new punching bag.  I've said for months that I wanted a punching bag.  We have a small tree that has fallen in our backyard.  I can't tell you how many days I stare out of my window and picture myself chopping that tree to pieces with an ax.  I know it sounds crazy to some, but a mom just needs to let it all out....preferably on something other than family members.  SO... because I'm not comfortable grabbing an ax, I did the next best thing and invested in a punching bag.  The funny thing about this is that I have to wait in line to use it.  Apparently several members of the Castle family have some frustrations to vent.  The ring leader is Clayton himself.  He's let loose on this punching bag a time or two and I just love watching him get it all out!

      Thank you all for praying for Clayton last week as he was in the hospital.  We had his counts checked on Wednesday and he was so low that we headed to Cooks for a transfusion.  Somewhere between home and Cooks on Thursday morning he got a fever in the car.  Perfect timing, Lord.  We were already there and had access to his doctor and nurses to get us through the low time.  The change in Clayton between now and last week is amazing.  He's been a little draggy for a couple of weeks now.  It's a gradual change, so you just don't notice it until he gets a transfusion, his counts go up and he's back to playing hand ball in the living room, asking Dad to wrestle, playing at the Waterpark, EATING, and laughing and cutting up.  The noise of the boys playing used to annoy me so much because it is just so loud, but now, it's a welcome sound reminding me that it's all ok.  He has just played nonstop since we've been home.  I LOVE it and so does he.

    While we were in the hospital, I felt sure that Dr. Heym was going to retract his previous statement and say that Clayton better not go back to school.  NOT SO!!  Dr Heym said that Clayton absolutely needs to start school.  YEAH.. Clayton was so excited to hear this.  He CANT WAIT!  He's already chosen his backpack and his back to school shoes.  As he was choosing his backpack, he had two choices and was saying "I just can't decide.  I need to figure out which one looks better on me".  SO Cute.  Please pray him back to school.   He REALLY wants to go and it means a lot to him.  We appreciate your prayers.

    For now, we're enjoying our high energy week and getting ready for scans and big chemo on the 22nd.  I DREAD IT... TRULY DREAD IT... Praying that it is over quickly with great results and pushes us closer to the finish line.


Thursday, August 9, 2012

It's a fever

Well here I sit at Cooks with Clayton today. He had big chemo last week,  number 8 of 14, then his counts dropped extremely low. We headed to Cooks for a transfusion, and when we got here, we learned he has fever and would need to be admitted.  We were told that we're here until his counts come back up....anywhere from 48 hrs to 7 days! We're pulling for 48hrs, of course! He's been given IV antibiotics, even though he says nothing hurts, and the doctors can find no infection. So, we treat just in case. One thing about Clayton, he's not a complainer. He doesn't ever tell me he's hurting, so I just never know. Hopefully these heavy duty antibiotics knock out whatever is causing his temperature. He did get his blood transfusion, so his little cheeks are somewhat pink again.

Whatever is bothering him has caused him to lose his appetite again. Y'all please pray about this with me. A momma likes her baby to eat! He's gotten so thin. He hasn't  lost but 4 lbs, but as he grows taller, he just looks so thin.

As I sit here I think about how blessed we've been to be fever free this long! I'm so grateful that this fever didn't happen last round while we were at the beach! It came on quick and really knocked Clayton back! 

We've been planning to start Clayton back in school, but when he gets sick like this, it makes me second think that decision. He wants to go back so badly! He's so excited about going that I hate to tell him that he can't. Please pray for us to make the best decision. It may be that he just attends on the weeks that his counts are high. 

Last week at chemo we learned that Clayton will be getting scans again on August 22nd. Dr Heym fully expects them to be clear, as do I, but it's still nerve wracking. I'm guessing this is a feeling I'll need to spend the next 5 years getting used to. Clayton often asks me what my biggest fear is. I always feel guilty because I never answer honestly. I simply say,"well, I'm really scared of heights.." the whole time knowing I'm living in the midst of my biggest fear...  I imagine it's every mom's biggest fear.  But, Somehow even in turmoil that is our biggest fear, we've managed to laugh, play, sing, on occasion, and even dance. We've figured out how to make the best of each day we're given, appreciate things we don't typically even notice, and recognize that a person's true character shines through, not when he's first place on the soccer field or clean up batter, but how he faces the giant that haunts him head on. I've learned things about Clayton that I might would never have known had we not had this trial. His ability to trust me, his doctors and our God is impressive. His attitude and endurance...AMAZING! His sense of humor, ( He's been known to  hide remote control rats and spiders under his hospital bed to scare nurses)
His ability to take a bad situation and make the most of it...incredible! 

So, for tonight... His fever has broken, his puzzles are done, his Smurf Village on ipad is well tended, and his hand at Old Maid was a winner. Praying tomorrow will bring better counts and a hope of leaving sooner rather than later!