Saturday, July 28, 2012

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!         

Thursday, July 19, 2012

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. 

Wednesday, July 11, 2012

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.

Friday, July 6, 2012

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.

Monday, July 2, 2012

Ian Kinsler and CAMP

 This has been an exciting week for the Castles.  Clayton and Cort participated in baseball camp just down the street where Clayton was named "Camper of the Week".  He went anxious and excited every day... did what all the other boys did, and had a great time.  I honestly don't know how he does it.  It amazes me. 
    Saturday we had the opportunity to go to the Ranger game with some of the kids from Cooks.  Ian Kinsler invited us and came in to talk with us and have a pizza dinner with everyone. It was a really special time for our kids.  The girls enjoyed it, mostly because they could show off their picture with Ian.. but Cort and Clayton... they just loved being in the presence of a guy who loves baseball so much and is living his dream.  While we were at the game, I noticed Clayton seeming super tired.  I know his Red counts are down, which makes anyone feel bad.
I called the doctor, who promised me that his counts are ok and he's probably just tired.  Sure enough, he started to perk back up after he saw the Centerfield KidZone.  He loved playing the games and getting his caricature drawn.  Please pray that his red count continues to go up and not down.  I do notice when he's low... even though he's not low enough to transfuse.
   Sunday afternoon we drove the kids to camp in

Meridian.  It's called Camp Sanguinity and is just for the kids with cancer, or just off treatment, and their siblings.  The camp was very pretty and looks like lots of fun.  The girls were not thrilled about it at first, but once they got there, I think they were ok.  Clayton was beside himself!  He was so excited! He met his counselors and I was able to talk with them quickly about my concerns for him...his eating, etc.  It feels great to know he's somewhere having fun with people who are much better qualified than me to help him.  Please pray that he has a great week of feeling good and enjoying all the activities.
    This walk is like a huge rollercoaster that doesn't stop.  Thankfully our rollercoaster is more like the Mine Train than the Texas Giant.. meaning that it's a little safer and less scary, but still brings the moments of anxious stomachs with quick twists and turns along the way.  God has been so good to us by keeping Clayton fever free, full of energy (most days) and with a true warrior spirit. Our little guy, who I believe always felt second to his brother and older sisters, has found a true champion in himself through this experience.  He's come out as a strong little boy who bravely puts one foot in front of the other.  He's strong, unafraid, and determined to win.  As of this week we are halfway done with treatment and just 20 more weeks to go.  As July 1 approached, I found myself thankful that another month passed.  I know our total journey won't be over in November as we will spend years making sure the beast never returns, but the big chemos will be done and I will no longer have to watch poison destroy my baby's body. 
    But, for now, we pray for a tremendous week at camp for my kids, and an uneventful BIG chemo on Friday night just after camp.  I shared before a caring bridge site for a precious little family whose son, Ethan, is truly battling a beast... neuroblastoma.  He is a tremendous warrior who continues to battle bravely... Ethan is at camp with my kiddos and his little brother is actually in Clayton's room..   .. I leave you with these words my sister in Christ, Ethan's mother, wrote on his latest post... Inspires me to truly trust God with all of our kids, their lives and our days.  No one knows what lies ahead for any of us... but we know that our God is here, holding us, loving us and wanting GOOD for us... Here are Rachel's words.. " A cancer that intended to divide us and instill us with anger was met by a God who knitted us more securely, providing peace that has transcended all understanding. A cancer that attempted to blind us to his mercies has been conquered by a Risen Savior who has opened our eyes to the glory that is to come. Instead of focusing on this present temporary suffering, our gaze is fixated upon the eternal hope He provides." May we continue to remember that HE goes before us, he shields our way, and HE holds tomorrow.