Friday, April 27, 2012

Coming Up...

This next week starts a new phase in our journey with Clayton.  I have scheduled his inpatient chemo at Cook Children's for Tuesday, May 1.  During this visit, we will go see Dr. Nielsen, the radiation oncologist, and begin our treatment plan with her.  We are scheduled to start his radiation therapy this week.  All of the doctors conversed and have decided that traditional therapy is best for Clayton.  They don't think that Proton therapy, which is the one done in Houston, is the best therapy for him. On the bright side, this allows us to be in Ft. Worth, which is much more convenient for us.  So... with that said, we will be starting our 6 weeks of radiation treatments this week.
   Tuesday Clayton will have what is called a simulation.  He will be put to sleep and will be fitted for a "mask" that he will wear during radiation.  The mask will help the doctors pinpoint the exact locations that the radiation will be given.  During this experience, Clayton will have new scans performed.  This should not scare me because I do believe the chemo is working and the tumor in his ear will be minimal, if not gone, but to be honest with you,  It terrifies me.  It's easy to sit here in my house assuming the chemo is working, but it's another story to find out for sure.   The actual MRI should take place on Tuesday or Wednesday with results given to us within 24 hours.
      I don't handle change well, and the coming six weeks are truly going to be hard for our family.  The older three kids are finishing out school with projects, concerts, field trips, field days...., Chad is running a business, Kate has her dance recital, Cort is in the prime of his baseball season, and somehow we will be making daily trips back and forth to Ft. Worth.  I'm so so grateful for the "cure" and the therapy, but I'm also a mom who feels like the next 6 weeks are really going to take a toll on our family.  So, today,  I'm a teary eyed, nervous wreck who is walking in fear.  I'll just admit it. "I know that God has not given us the spirit of fear", so I guess we'll just have to pray for me in that because  I  AM afraid!
    Please pray for our family.  When your alarm goes off this week, please pray for the following:
1-  Clayton to have excellent scans that prove his chemo is working.
2-  This week would go smoothly for Clayton and me in Ft.Worth and my family here.
3-   Big Chemo to not be hard on Clayton this round.
Please also just pray for our family in general.  This is hard on relationships.  Sometimes the first relationships to be harmed are ones within family.  Please pray for our marriage to be stronger than ever through this and for our kids to be able to talk with us and let us guide them through this time. Satan would love nothing more than to take my son's miracle and transform it into something ugly. Just pray God's hand over our family. This coming week is going to be one of the hard ones... but... one step closer.

Thursday, April 26, 2012

Never Give Up

   This week has been fairly uneventful for Clayton, Praise the Lord. We headed to the clinic to get his outpatient chemo yesterday, which went incredibly well.  Once again, no screaming, kicking or crying.  Hooray!  The sweet staff at Sanger Avenue all wore their "Clayton Wins" shirts and presented Clayton with a Baylor football signed by RG III and Kendall Wright.  RGIII Wrote the words "Never Give Up" right above where he signed his name.  How exciting!!  After chemo we headed to see "Chimpanzee".  It was a really cute show that Clayton loved.
    The picture below is our experience when I took Clayton out to the suspension bridge to feed the ducks earlier this week.   We are really looking for "field trips" and learning experiences to get us out of the house, but also away from crowds.  While his counts aren't terrible, they're not the best they could be either.  We just try to avoid big groups and stay as healthy as we can.  So far, so good.  I've almost been scared to say for fear of jinxing myself, but Clayton is just doing so well on his therapy.  He has not experienced many of the side effects that are so dreadful and scary with chemo.  Besides a little nausea a week after the Big Chemo, he's been feeling good.  He does get fatigued easier than normal, and he does look very pale, but other than that, if he wasn't bald, I doubt you'd guess anything was going on with him.  I have noticed that he's lost most of his eyelashes too.  This probably adds to his pale appearance.
      We are still waiting to hear what the plan is with radiation.  Honestly, I'm just dreading it.  Chemo is dreadful enough, and to take on the six weeks of radiation with the possible side effects brings knots back to my stomach for sure.  We have been told that it's likely he will lose all hearing in his right ear because of radiation.  As the doctor was telling us this, it was all I could do not to say " Well, you don't know MY God".  I'm not banking on any "for sure" losses for Clayton.  If in doubt about that, remember our kidney miracle.  Speaking of  kidneys, Clayton will have an ultrasound and follow up with the urologist at Cooks next week.  Continue to pray for a great surgical result to show and for opportunities for me to share his miracle with the entire staff in that clinic!! (We are having his follow up at Cooks.. remember his surgery was at Texas Children's... so they need to hear our miracle..right?)
     Clayton still continues to play with his team , The Marlins, at Broughton little league.  He has a great batting average and is hanging right in there with his teamates.  I'm amazed by his ability to just take life one day at a time, face each obstacle with bravery and keep smiling.  Totally amazed!  I was thinking this week about what I used to worry about and how trivial it sounds now. I even remember when we first saw the growth in Clayton's ear, and Dr. Holland suggesting that it could be a wart.  I remember thinking... OH MY GOSH.. A wart in Clayton's ear.  YUCK.. Wow.. how I wish it would have been the wart!  I would encourage us all to really look at life and what concerns each of us. Weed out the trival things.. the worldly things... they DON'T MATTER.   Knowing God,  teaching our kids His goodness, and following His lead should really be our constant focus. Nothing worldly is helping me through this trial... well, maybe cable TV is helping Clayton a little, haha... but the worldly possessions aren't comforting me, or making me feel better about my circumstance. The presence and relationship with My God IS!    He is good. He holds tomorrow.. and He goes before us and shields us.  Even when we don't see or understand, He is with us.  What could be better ? I think nothing!
   As a random family side note, I do have 3 other kids, as you know... Kate spent last week working hard and trying out for Goal Tenders at Midway High School.  I'm proud to say that she'll be under the Friday Night Lights next fall dancing with the team on the field. Congratulations to my Kate!  Can't believe she's headed to high school and can't believe the beautiful lady she has become!

Wednesday, April 18, 2012

Rembering His faithfulness

Well, another week has come and gone.  Praise the Lord!  I am all about enjoying every day and all, but I do like to see us one step closer to recovery.
    Today Clayton had in town chemo which went great.  I'm learning that if we load his port with Lidocaine cream about 45 minutes before he gets accessed , it makes a huge difference.  When I write that, I am honestly thinking.... in my WILDEST Dreams... or nightmares, better yet, I would never have imagined that I'd EVER be talking about a port in regards to my little son! EVER.. but who would, right?  Anyway... today Clayton received his chemo treatment without EVEN flinching.  NO struggles, no crying, no hitting or kicking me.  NONE.. I'm so amazed by his strength and courage.  Just completely overwhelmed at his ability to sit there and watch what's going on with NO crying.  Boy, that was amazing today. 
     That reminds me that last night when I was preparing him for today and talking about Wednesday chemo and bloodwork, he asked me, " When are the nurses going to give me all the blood back that they take out of me".    So cute.. so cute.

     So today my sweet niece, Claire, joined us for chemo and our big treat afterward. THE THREE STOOGES.  It was a really cute movie and one I recommend.  It was a nice laugh that was much needed.  And, by the way, NO ONE goes to the movies at 10:45am.  It's a great time to go for a person who has a low immune system. With that said, after the movies, we got the results of Clayton's bloodwork.  It turns out, he's not low at all.  I mean, he's low by a normal child's standards, but his ANC was 1,400, which is not neutrapenic and a number I'm thrilled with for a week after big chemo.  We'll take it for sure!
     Tonight I had the precious opportunity to sit and visit with an old friend who reminded me of God's faithfulness.  I will never forget the sad day that she lost her beautiful baby to a rare birth defect.  Her gorgeous first born baby daughter met Jesus just after she was born.  I remember it as a terribly sad experience that was just unexplainable.  Why did these amazing Christian people have to endure such suffering? I remember at the time, not understanding God's plan in that.  I still don't understand it, but tonight I had the opportunity to watch her living daughter, an amazingly beautiful young teenager, dance her heart out with incredible grace and beauty.  As I was watching her dance, I was reminded of God's faithfulness.  The faithfulness that God showed their family with the births of their healthy children and the reminder that He was walking beside them the entire time.  I'm always in awe of what the Lord shows me when I least expect it.  Tonight was one of those moments. Just looking back and remembering the suffering and hurt that happened so many years ago, and seeing now the blessings upon this family was encouraging to me.  He is always walking beside us.  Even when the road seems so lonely and dark,  He shows us His goodness. 
    We have several friends hurting right now who could use God's peace, healing and grace over their families.  Our friend, Rafer, is struggling right now with cancer.  He has a precious wife and 2 young sons.  We ask you to join us in prayer for him tonight.   Also, our young friend, Molly, who has a brain tumor has had a rough week and could also use big prayers for God's healing over her.  We are certain that the Lord has a bigger plan that we can not see.  We also know that the Lord promised all of us Good. We rest in that!
      Psalm 36:5 Your love, O God, reaches to the heavens, your faithfulness to the skies.

    Psalm 89:1  I will sing of the Lord's great love forever, with my mouth will I make your faithfulness known through all generations.
Lord.... may this be my prayer... To sing of your faithfulness forever...

Clayton with his Nana!

Thursday, April 12, 2012

I think he has a crush...

I'm pretty sure Clayton has a crush on his older cousin, Addie. Addie is his new favorite person these days. I guess her gorgeous smile, fun personality and her ipad have made her his new crush. Honestly, he loves his girl cousins! He was Claire's date to the zoo last weekend, and loved that too. If it's not Claire spoiling him, it's Addie.  He's one lucky little guy.

We just returned from his last overnight chemo at Cook. He did great. It was shorter than usual because we are learning that he can take his Neulasta shot at home, which allows him to leave before the 24 hours is up. That makes this easier for sure. We met with the Radiation Oncologist in Ft. Worth and talked at length with her. She was also very reassuring, although most of what she said went right over my head. She was going over all of the techniques and choices for treatment and it's all so overwhelming. It looks like he will be starting the last week of May and continuing through to the first week of July.
We also learned about a camp for kids with cancer and their siblings. It's called Camp Jon Marc and it's in Meridian, right near Waco. We've signed our kids up this summer and are expecting a life changing experience for them all. I'm praying Clayton will be well enough to do it.

This round of chemo has gone amazingly well. I'm thinking that having a couple pretty little cousins around has been a great distraction. He hasn't been nauseated and has just bounced back beautifully. I started to call the hospital and make sure they actually administered the right drugs... Just kidding, of course. I'm so thankful that he's doing well. Dr. Heym, his Oncologist, even commented on how great he's doing on Chemo. He is full of energy, excited about life, and still going. Somedays I feel like I'm trying to keep the bull in the pen.

Please continue to pray that the treatment is working. There are so many unknowns, that it gets so scary. I've had to become a totally different person, which I'm not always sad about. I've spent my life dealing with fear and anxiety. Sometimes crippling anxiety that truly made me miserable. Somehow through all of this, I'm able to breathe. I'm gradually feeling the knot in my stomach less...and I feel a strange calm... and all without medication. You're hearing this from the same person who had to medicate myself to get through hosting Caroline's 12th birthday party with 60 of her friends. Honestly, If it weren't for the calm that the Lord is giving me, and you all are praying over me.. I'd be in the crazy house. I said earlier this week, I don't know what's harder.... A child on Chemo.. or two teenage daughters. :) No honestly, I do find myself resting in God's peace, hoping.. and still BEGGING for the best for Clayton and trusting God that all of the doctors are right and he will be a fully recovered busy 6 year old... well, 7 by the time treatments over. I'm laying in bed at night seeing his welcome home party after his last chemo and we're all on our knees thanking God for the journey and the healing. I'm believing it! But, for now... it's week 8 and we're moving forward one step at a time. As fast as time goes by, it somehow still feels like it's creeping. Keep praying us through.. one day at a time.

Monday, April 9, 2012

One Holiday Closer...

   Well, Easter came and went.  We had an amazing weekend with friends and family.  Clayton felt great and enjoyed so much just being normal and participating in the egg hunts and all of the fun.  Also, this holiday puts me one holiday closer to Christmas!! Come on Christmas!!  Of course, I'm trusting that at Christmas we'll have a cancer free little boy who's looking forward to a big year full of normalcy and not chemo treatments.  I'm believing God for it!  Not to be misleading.. he does face 5 years of quarterly scans to make sure that there is not reoccurence, so this evil cancer will still exist in our minds, but we just pray that it absolutely does NOT exist in his body! 

    As I was thinking about Easter, I couldn't help but think about Mary and the hurt her heart must have felt while she watched her precious, blameless son suffer and die.  I can only imagine the conversations she had with God... probably some similar to a few I've had.  I imagine the despair Mary had when God didn't swoop down and save her Jesus.. at least not in the timing she would have preferred.  I'll just be honest, I would lay my life down for others,  those who are deserving, but I would NOT offer my son's life for others.  As a mother, the thought of that is just unbearable.  I've had friends tell me that Clayton's journey is changing lives.  While I'm so glad that lives are being changed, I'll just tell you that it hurts my mother heart that it's taking Clayton's suffering to do it. I am glad that God is taking BAD and making it GOOD... no mistaking that, but I just wish it didn't have to involve my baby.

My sweet niece, Addie, came to spend the week with us.  She's hanging out with me and helping with Clayton and basically spoiling him rotten.  She's also heading up with me tomorrow to Cook Childrens for Clayton's next BIG overnight chemo.  I HATE big chemo. I'm so thankful for the cure, but so hate what the drugs do to my baby.  I'm just praying for another cycle like the last one.  Little sickness, no fever and great blood counts.  We're also meeting with the Radiation Oncologist in Ft. Worth as we are moving closer to the dates for Radiation to begin.  This is getting very scary and unnerving.  Please keep us and Clayton in your prayers as we make decisions that allow us to move forward.

I remain confident of this: I will see the goodness of the Lord in the land of the living .  Psalms 27:13
These are some of Clayton's cousins in Baton Rouge sporting their Clayton Wins Shirts.
If you'd also like a shirt, please let me know.  We have some sizes left, but are reordering AS and AM.
Thank you all so much!

Wednesday, April 4, 2012

Divine Appointments

Clayton with his team, The Marlins, and the "Clayton Wins" Banner for Little League

Wow! Today was an incredible day. It was a little chemo day. After last week, and the rough display that Clayton gave after his treatment, I knew I'd need to come up with something special to try to make this day more bearable for him. Last week after he calmed down, I was able to talk to him about how Wednesdays would be his Chemo day. It would be every Wednesday for a long time. I promised to be with him, help him, and try to do whatever I could to make it easier for him, but it would, in fact, be every Wednesday.

So, with that said, I got new Lidocaine cream to cover his port with so it wouldn't hurt to access it, and I told him we'd go see the Easter Bunny at the mall after he had his treatment. Well, we had a small delay getting there this morning. He wasn't pumped about getting up and getting the cream on his port and facing reality, and then we had a delay when I stopped by the elementary school with a carload of "Clayton Wins" tshirts. But, finally, we got to the clinic. Clayton did his chemo, a little easier than last week... just a few kicks and slaps at mommy, but now we're on our way to the Easter Bunny at Richland Mall.

   We arrive at the mall and see the Easter Bunny with no hiccups.  Just a cute little bunny, a smiling happy boy and nothing more.  I purchase the picture and then decide that the fun is not over.  I ask Clayton to walk with me and find a surprise.  I was going to take Clayton to get a Hermit Crab.  Just another little something that we could observe and journal about.  Honestly, something that could maybe make me feel a little better about what he's going through.  So, we head down the mall to Earthbound trading, where the crabs are, and just as I round the corner I see a precious little guy standing alone in the mall, right outside where I was supposed to be going, standing next to a large piece of posterboard with the words, "Prayer for Healing" written on it in in red bold print.

    My feet don't delay and Clayton and I walk straight over to him.  There is no hesitation at all, just a draw to go and pray with this young man.  I approach him, and not wanting to put Clayton through listening to another discussion about his disease I say, "This is Clayton, he's battling Cancer.  He has an inoperable tumor and we're trusting God to heal him".  The young man, Josh, asks Clayton if he knows Jesus.. to which we respond.  "Yes".  He says, "I was just standing here and my ear started ringing.  I feel like the Lord wants me to pray for healing in your EAR"  ... Okay.. so at this point the tears are flowing.... let me just stop here and tell anyone who doesnt know me.. I LOVE to shop.  Going to the mall is relaxing for me... I enjoy looking at things and finding bargains.  I have been to this mall hundreds of times and NOT ONCE EVER have  I seen this man or anyone else for that matter, standing in the mall ready to pray for me.  This is NOT normal... what else is NOT normal is that Clayton and I were even at the mall.  Even though I love to shop, I do NOT take a child on chemo to the mall.  We haven't been to the mall in 8 weeks.  It just doesn't happen...  Okay.. on with the story.

    So, Josh, as I learned his name to be, knelt down with me and Clayton in the middle of Richland Mall and prayed for Clayton.  Not a loud screaming, rip roaring prayer, just a precious heartfelt prayer proclaiming healing over Clayton's ear.  Protection over the rest of his body and grace for our family.  WOW.. Josh goes on to tell me that he would only be at the mall a short time and I just happened to be there at the right time. He woke up with a verse on his heart and the urgency to pray healing ovee someone, and Richland Mall was the place. WOW.. imagine if I wouldn't have been running late this morning! The blessing I would have missed.

  After talking with 23 yr old Josh for a short bit, he's attending a ministry school here in Waco called Acts Church.  He's lived here 1yr or so, does NOT frequent the mall, and happened here today.  We exchanged numbers because he needs me to call and tell him when we find that Clayton is tumor free! Ok.. Wow again.. this is just a firm reminder to respond when the Lord calls us to minister in some way.  Imagine the blessing that both Josh and I would have missed if he had ignored the Lord's voice this morning.  Amazing!

   Clayton and I finished our shopping, we're headed home with Joey,  our new hermit crab, and we're ONE WEEK closer to being done!

   This is the last week of our second cycle and Clayton has done GREAT.  He's unknowingly been exposed to sick kids while his counts were low this week, and he held strong the entire time. God's hands of protection are covering him. As I've described several times this week, I feel like I'm just keeping the bull in the pen.  He wants to go and go and I'm a nervous wreck to let him.  Praise God he feels good.. and to point out ANOTHER divine appointment.. his Chemo appointment today showed his counts went from 349 last week (terribly low) to 3,469 this week. WOW... Amazing.  He's able to attend his Easter Egg Hunt and go to church this Sunday.  So exciting.  So wonderful.  God is AMAZING.  He is HEALER.. He is GOOD ALL THE TIME....and he is EVERYWHERE!