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.
   

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.

   

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! 

I'm still mad!

Last week we had a great time at South Padre Island. Clayton had a great time and thoroughly enjoyed the beach. Our whole family had fun.  The resort was beautiful and the company was great. I honestly couldn't have asked for a better experience. I'm so thankful that God heard our prayer and kept Clayton well so that we could all be together and enjoy all the fun. We did late night crabbing,  parasailing, lots of swimming, boogie boarding, and had fun with some pirates. I promise to post pics soon..I'm using my iPad, and it won't let me upload pics here tonight. Clayton was amazing and full of energy....until the last day. Our last day there, he hit a wall. He didnt get sick, just lacked energy and lost his appetite...again...  Which leads me to express my current thoughts.         I'm mad!! Really irritated. I sometimes feel like a spoiled brat complaining about my circumstance when I do see Gods hand on Clayton, but I'm still mad. I look at my baby's little weary body and see the frustration that he has. I can't make it go away!  My heart has never ached so badly. After talking closely with my girls this week at South Padre, I heard the hurt in their hearts too. I hear their desire to just be Kate and Caroline and not "that girl whose brother has cancer". I know their desire to hear their mom laughing and being "the fun mom again."  I see my husband's dread when he sees my tears...again. I see the complete hurt on him when despite the fact that he loves me intensely, I push him away because he can't fix this either. I see the wall I've placed between us because his way of dealing with this health burden is different than mine, and I can't understand it. We're hurting...bad! And it makes me mad!      I've had some really great times with the Lord this past week. I found myself alone on the dark sandy beach  in front of a gorgeous ocean on my knees trying my best to understand how a God big enough to create such an amazing scene could allow my  precious little boy suffer. If the Lord knew Clayton before he formed him as a complete surprise and gift in my womb, didn't He also know his cells were preparing to be cancerous? Why did He not immediately fix it? Why did He allow them to grow? It's these thoughts I can't make sense of. But, somehow as I walk off that beach after a good cry and scream at God, I leave knowing He is amazing God regardless of how much I don't understand.      Today as I was driving through town, Right in front of my face I saw a massive sign that said, "1 in 5 children diagnosed with cancer will die" Cold hard facts that I can't get away from, and again, I'm mad. My heart sinks, my stomach turns, the tears flow and I'm back at that moment that I'm questioning God. This time I start reasoning with Him. You know, I was the kid growing up that said NO to peer pressure, who wasn't afraid to stand up for what's right, who didn't drink, cuss or smoke... who BOLDLY spoke the gospel to people around me...Lord, how is this FAIR? I lost friends because I was devoted to You...I lost boyfriends because I said NO... We've even given faithfully at times when we didn't have anything to give!! Make sense of this for me, Lord!  All I can hear as a wait for an answer is " When you are weak, I am strong". "Be still and know that I am God".."Trust in the Lord with ALL your heart"... Ugh ok, Lord, but I'm still mad!! I still don't understand, but please help me use this for your glory.       Please continue to pray for this weary momma's heart. For attacks from Satan to be slammed with the power of God before they get near my family. For miracles to continue in my baby who is truly innocent to all of this...For continued healing, for his appetite to return and the weight loss to stop, and for the next upcoming chemo scheduled for Wednesday. Pray for him to make counts so we can keep trudging forward to the finish line.  Cover us!         

South Padre... here we come!

Let's just play catch up for a minute for those of you who are not my facebook friends.   Clayton had his counts rechecked again last Thursday morning and his ANC had doubled, making him completely eligible for Big Chemo.  Kate and I loaded him up, went off the Cooks and had his Big Chemo.  He did amazingly well.  To this moment, a week later, he has not thrown up ONCE.  To God be the Glory!  Being able to do his chemo last week allowed us to stay somewhat on schedule for finishing his treatment.  We had a small delay, but not as long a delay as this could have been.  7 more big chemos to go.  Oh My Dear... when I think about it, it's overwhelming, but I just try to remember that we started with 14 big chemos ahead of us... Halfway ain't bad.
    So, this week, because clayton's counts had gone up so high, he has been feeling great and made a few days of the day camp he LOVES in Arlington.  We've spent the week with Chad's sister and her family while the boys attend day camp.  Clayton has loved every minute of it and is so excited to be a part.  He STILL continues to amaze me.  As a bit of educational information, I'll tell you that about 7-10 days after big chemo a child is typically at his lowest ANC count.  For Clayton, that will be today and through the weekend.  Yesterday we went to have his counts checked and get outpatient chemo and his counts are pretty low.  In fact, I'm nervous for our South Padre trip.  We have been so excited and ready to go, and the idea that Clayton would get sick and end up in an unfamiliar hospital scares me terribly.  His doctors have said that he can go, but to make sure and check in if he has a fever.  Our fever track record has been good, so we're praying that continues. PLEASE pray with us.  Pray that he remains fever free.  We are only going for 3 days, 4 nights, so it's a quick trip.  We're taking 1.5 hour flight tomorrow and then we'll rent a car and be in our own condo.  Hopefully, we can stay secluded and protect our little guy.
   This morning as I was walking I once again had a picture of Clayton that I believe the Lord gave me.  I was praying for him and for protection over his body.  I had a picture of him playing and smiling and 4 beautiful angels hovering around him....almost as if God has assigned him extra guardian angels during this time.  Precious, gorgeous picture of the Holy Spirit hearing the call of this mom's heart and sending protection.  Please pray for his counts to protect his body from things unseen.  We appreciate your prayers.
   As another call to prayer, a long time friend of mine has a son getting a biopsy this morning with the possibility of him also having Rhabdo.  Please pray for this little guy and his mom.  Pray that it's not cancer.  Thank you all so much for your faithful prayers for our family. 

Just focusing on the positive

   If you've known me very long, then you know I'm an anxiety ridden planner and I like to know what's coming.  Well, this walk with Clayton has taught me that the path I'm on is not one that can be seen as a well laid out map.  Once again, Clayton didn't make counts for chemo yesterday.  He's getting close, but didn't make it.  This is discouraging, but only because I am ready for this marathon to be on the downhill.  Right now we're sitting on the top of the mountain waiting for the go ahead to walk down.  We're exactly halfway through, so I'm ready to be on the home stretch.  I know this is God's timing, but it's SO hard to lay it down and say... it's yours, Lord.  As a mom, I just feel like I want to orchestrate this whole experience to make it work for everyone and insure a Christmas free of chemo and start a new year fresh.  I'm STILL focusing on God's timing and I do understand that HE is in control, it's just very hard. We're going to try to make counts again tomorrow.
    If I could just give you all a prayer list for this week.  It may help you understand my frustration on not being able to plan. Cort has a baseball tournament this weekend in Arlington. Caroline has mandatory cheer practices in Waco.  The girls and Cort are going to camp this coming week.  The girls with church youth and Cort with daycamp at his Aunt Chatas.  (Clayton was supposed to be attending this camp, but obviously, this one is not going to work out for him).  Friday, July 20th our family has plane tickets to South Padre Island for a cheer competition that Caroline is participating in.  We plan to return the 24th.  At this point, regardless of if Clayton gets to do chemo tomorrow or Monday, he will still be at a very low point with his immune system during our trip.  When we originally planned the trip, this was going to be his high point.  Please pray because we don't want Clayton to get sick, but would love a great time with our family.  Also, Chad is going to be out of town a few days next week, which leaves me home alone to get the family packed and ready to go to South Padre by myself with a 7 year old just off of big chemo. Chad plans to meet me at the airport after I've retrieved the older 3 from camp, and are ready to go to S Padre Island... I know.. it's alot, and I can hardlly breathe thinking about it all.   So, we could use some prayer this week to give us grace and mercy to get through it all uneventfully. Nana,  I may need you to rescue me.
   With all of that on my mind, last night I started to list out the positive things we're experiencing, and just wanted to share part of the list.
1-  MY SON IS CANCER FREE. His treatment has worked, and we're just ensuring his future now. NOTHING is more positive than that!
2-  Clayton feels GREAT.. He's been eating, playing, arguing.... Just old Clayton.  2 weeks off of chemo has been great for him.  He's even gained a couple of pounds.
3-   Clayton's other counts are outstanding.  His Red count is high and his platelets are great.  This makes him feel good and want to play.
4-  He has been free of fever for 4 months even at times when I thought it was a sure thing that he'd get sick.  People all around us have had strep, pnemounia, bronchitis, stomach bug... PTL.. our family is well.
5- Clayton has not lost anything to cancer. Numerous kids lose an eye, an arm, organs... Praise the Lord, he has not.
6-  We have still been able to do fun things as a family, and haven't felt like we've missed a whole lot because of our journey.
7-  RADIATION IS OVER.  That is a HUGE positive
8-  Clayton is still smiling.  Halfway through, and he still smiles.
   Of course, there are many other positives, but this is just part of my list.  Somehow remembering what's right and good keeps me focused on what's right in front of me instead of the "what-ifs".. Please pray for us this week.

They're BACK...

The kiddos are BACK.  We picked them up bright and early this morning and I couldn't help but cry when I saw them.  I think they all looked great and like they'd made lots of friends and had a great time.  They spent the whole ride home arguing over whose turn it was to tell the next story.  I think my older kids came back appreciating their health and excited about new friendships.
      I couldn't help but notice today that Clayton has formed a new bond with Kate.  They've always been close, but no doubt, she was momma at camp this week.  So thankful for her.  She was telling me that she'd be sitting down and suddenly have a little bald guy in her lap leaning back on her.  She said the fireworks were made complete with a little cutie sitting on her indian style legs.  So thankful for the role she played this week for him.  Cort even admitted to going by at meals and making sure Clayton was eating.  I just love those little guys.
      One of the BEST things was, this camp was staffed with a full medical crew.  There were nurses from the oncology floor, a doctor, and lots of other support staff that made the medhut an awesome gift to parents like me.  The staff was able to draw Clayton's blood on Thursday to check and see if he would make counts for his big chemo scheduled for today.  Well, he missed it by a HUGE amount.  His red counts and platelets were great, but his white counts were terrible.  In order to have chemo, his ANC must be 750... which typically, after a 3 week break, it easily is.  Well, this week it was 290!!! Not only is this awful, but it's dangerously low.  The ANC is the count that tells us how suseptable Clayton is to catching an illness. So, we are just being careful and praying that the count goes back up by Tuesday when we try again.  This would be our prayer request. The doctor says that this may be Clayton's normal after radiation, etc.  Just pray with us that we don't have anymore unexpected delays.
    When I first heard that we were unable to do chemo, I was upset just because I have found myself really pressing toward finishing this, putting it all behind us  and moving forward.  But, you know, today as I was doing my 3rd of many more loads of laundry, which by the way.. stunk to high heavens as Caroline has apparently not been taught that you don't mix wet laundry from Monday in a sealed suitcase all week.... anyway...while doing the laundry I was talking to God and  was reminded that God's timing is perfect.  He knew well before me that Clayton would not make counts today.  He knew that this would thrill Clayton to have a couple of days off of chemo.  He KNOWS before it happens.  With that said, He knows exactly when this whole journey will be over and he already has ordained the moment that Clayton will be returned to full health with full counts, lots of hair, and  ready to take on his bright future full speed. Nothing I can do will change the plans He already has for our family.  He also knows that I will spend a lifetime with a heart that's missing a substantial piece because of what my love is going through, and He sees the hurt, fear and sadness that I try so hard to hide from the world, and I believe that same hurt will continue to remind me that it's through Him that we live and breathe...not ourselves or our doctors.
   For those of you who like to remind me that my journey will NOT be over in November... I love you, I really do.  I appreciate you being honest with me and reminding me that cancer will have forever changed our family.  I couldnt agree with you more.  We will never be the same again, and in many ways, I am thankful.  However, I will be brave and put this out there.  I have a peace in my heart that the Lord has given me that Clayton's cancer is gone.. forever.  In fact, I have the peace so strongly that I want with everything in me to stop these chemo treatments, walk the other way, and never look back. I will not do that, though, because as a mom, it's my job to insure that Clayton returns to full health to the best of my ability. You see, my fear is not the cancer, but the danger the treatments are on his body.   I truly believe that Clayton was healed and that we will not see this again.  I'm not saying that as a hopeful mother, I'm TELLING you that I believe the healing has already been done in Clayton.  That's what makes this momma's heart hurt... I honestly feel like I'm doing these chemo treatments and the healing has already been done.  But, we press on, pray for God's hand over the rest of our treatment, and wait on HIM.  .. Now, next week.. when I'm freaking out because things aren't lining up like I want, yall remind me I said that. 
     But, for this weekend, Clayton will be hanging out with his Nana and cousins, away from visitors and the public and Chad and I will be watching Cort play ball in Dallas.  Please continue to pray for our family.   We love you all and are forever grateful.
   Ecclesiates 3.... the whole chapter.. but mostly "What do workers gain from their toil?  I have seen the burden God has laid on the human race.  He has made everything beautiful in its time. He has set eternity in the human heart, yet no one can fathom what God has done from beginning to end."  His time is perfect... God's timing.. Not mine.