First Treatment Done

Well it's been some long boring days waiting here at Tx Children's, but worth it to see our boy healing so well from surgery and getting his first treatment. Who would have thought that watching your child get chemo could be both heartbreaking and joyous all in one breath?

We were told yesterday that the Pediatric Urologists would take the tube out of Clayton's side from his kidney surgery. Once the tube was removed, we'd start the process for the chemo. We waited.. the clock ticked.. we waited... Still waited until about 8:00 tonight. Apparently it takes 11 hrs for 2 attending physicians to agree on the protocol, 2 pharmacists to check the drugs, 2 nurses to double check it, blood work run and 3 samples of urine to make sure there's not a trace of blood in it EVEN after kidney repair surgery. WOW!! So, now, 2.5 weeks after diagnosis, 6 scans later, two surgeries... One major, 5 events requiring anethesia, and many hours of Candyland games, Old Maid, Sorry and lots of joke telling... CLAYTON now has started CHEMO treatments to BEAT Rhabdomyosarcoma.

He slept through it. Believe it or not, he slept through it. He woke up toward the end and was playing games, had a little bit of nausea, but not enough to cry. So glad that it wasn't worse on him. Now he's just got a bit of the hiccups!

Today we were bombared with "here's what do ifs"...Here's what NOT to do.. Here's where to go... WOW... will I EVER remember all of this? Our doctor met with us today and reminded us that while Clayton will have to miss school, sports events, camps, etc.. it's just a small window of time compared to a long healthy life. He was VERY encouraging and feels confident that Clayton, along with all of his prayer warriors, will beat this. So, with that, I am now a full time Homeschool, Cancer Expert..in training, scared of every little hiccup Mom. Y"all stand behind me and pray me through it.

We'll be able to leave here tomorrow night and see our other kids. We're soo excited. I haven't seen Cort in 10 days. LONGEST TIME EVER. Can't wait.

I still say God is Good.. even when it doesnt seem fair and even when the timeline isn't to my liking. I still know God is Good and Wants good for me and my son.

I'm not brave... I'm terrified!

You all that write me are so sweet. By the way, when we get blog comments, we read them all. I'm not always able to respond back because I don't really know how and don't have all of your addresses, but I so appreciate it. So many of you incredible people have said how brave we are to be walking this journey. Well, I don't consider myself brave. I consider myself terrified. Just fear of the unknown.

It's hard to put it into words. I do trust that Clayton is going to be fine when this hard road is over because I can't imagine it any other way, but I'm still terrified! Fear of the unknown. How will he respond to treatment?... which by the way.. he will begin on Wednesday. What will his limitations be?. What if he gets terribly sick?. What if he breaks down emotionally? What if kids make fun of his bald head and Cort's not there to sock them?, what if... what if... what if... What if I can't do this?.... What if my OTHER kids can't do this? What if I miss something incredibly life changing for them and dont see it?... It's unbearable.

To be honest, I wake up with a huge knot in my stomach because the nightmare didn't end. It is still there. I see his little innocent self and am trying to figure out how between now and Wednesday I explain to him why we are going to poison his body... why he can't go to school... why his hair will be gone.. It's a moms scariest nightmare. I'm not brave... I'm terrified.

The only thing I know is that there is a peace that flows over me when I'm so afraid like I am. It's uncanny. I feel like this journey is mine for a reason, one which I will NEVER understand, but I'm supposed to figure it out. I'm supposed to grow and learn and be stronger from it. I'm supposed to touch someone or something that otherwise would not have been changed. That still doesn't change the mother's heart of .. why MY boy? Why not just me? It doesnt make sense. It doesnt make sense for all of these precious kids surrounding me. Unknowning and so trusting. It doesnt change the fact that when I really think about what's going on.. I'm NOT brave.. I'm terrified.

A friend sent me these verses today.."But thou, O Lord, are a shield for me: My glory and the lifter up of my head." Psalm 3:3 " For He will command His angels concerning you to guard you in all your ways." Psalm 91:11 ; I'm resting in these tonight.

And most importantly.. Clayton is doing GREAT. He had a great day and got up to the playroom, did lots of crafts, played xbox, played First In Math, had his iv removed, and is kicked back watching Open Season 3 on the exciting Texas Children's Hospital Movie Channel. Yes, watching the hospital movies is the highlight of the day. He ate today and was sitting himself up in bed. Considering that he has a HUGE wound on his side from his kidney surgery, it's impressive. His Urologist came by today as he was walking in the hall and was amazed at his movement. My little guy is an amazing trooper. Lord.. Please Please Please... let my baby heal and have the opportunity to be everything that he is capable of being.

Prayer Points:
1- Obviously healing of the cancer
2- First treatment to go smoothly Wednesday morning.
3- My other kids at home. They are hurting, but doing GREAT with Granny.
4- That this terrified mother will embrace this new life with hope, security, faith and a calm spirit.

Love you all

Recuperating

Today was a tough recovery day for my little guy, but he did it! He hasn't walked the halls yet, but he has stood up and sat up in a chair. He's also now wearing his little Under Armour "Protect this house" Baylor shirt which always makes him feel better. And dear Jesus.. Please protect this little house of his.

We have had numerous nurses and staff stick their head in the door to see the kid whose kidney scan looked like it did and ended up defying the odds and proving the scan wrong. It's an amazing opportunity to tell these guys what a work God is already doing in him.

This morning we had our oncology team come in and check up on Clayton. The weekend team consist of a "Fellow", and 2 residents. As they were in talking with me, they were also sharing their amazement about the kidney situation. I then told them that many friends and family are praying for Clayton and as you all pray for clayton, you also pray for his "Team" which would be them. I told them to expect amazing things and be ready for greatness because God is greater. I noticed two of them looking at me like... Yeah.. Ok.. but one had big tears in her eyes.

This morning when Clayton was hurting while he had to sit up, I asked him, "Clayton.. do you want me to pray for you?" In his cute little voice he said "Yes." Well, on I went with a room full of nurses who were helping, praying for a little boy who doesn't deserve anything he's getting, is unaware of the danger inside his body, and who trusts in a great God to make his tummy feel better. Precious sweetness... Lord Please Protect my baby!

As a side note.. I've made a commitment that when we leave here, the Castles will be donating a room up on the 16th foor full of Pinatas, Bats, Dishes, Old Ceramics and a punching bag all for parents who need to just go somewhere, throw punches and delight in breaking things. It's going to be an awesome success and one that is much needed in this place. It's okay to be mad. It really is. Satan better flee from my baby because Momma's Mad!

Love you all! Please keep praying that clayton's cancer is already being treated even while we wait for Treatment. Please pray that God is already working his miracle inside my little boy.

Surgery is over

We were moved up in the schedule today and had surgery first thing this morning. We got a huge bunch of good news. When the doctor actually looked at his kidney, it was in much better shape than expected. This is strange because Chad and I actually looked at the images yesterday that showed his kidney as pretty bad off. We believe a miracle was perfomed and Clayton HAS BOTH KIDNEYS.

The doctor did a small repair to his kidney and finished the surgery about 10:30. We are told that perhaps by Wednesday he can start his chemo treatments. Clayton is in a lot of pain, which is heartbreaking for us, but he's able to sleep and we're so thankful for that. We are trusting God to keep that awful tumor dormant, and even bigger, we're asking his for TOTAL HEALING. We believe that God will continue to do a wonderful work in our son. In fact, we are trusting Him for it.

A huge ray of sunshine today was seeing my family. My girls drove down last night with my mom, dad, sister, niece, nephew, etc. and sat with us through the surgery, saw Clayton and visited over lunch. Amazing how precious it is to reunite with our kids. We missed Cort, but he's got a little surprise coming this afternoon. Dad is going to meet up with him for his baseball tournament since Clayton will be mostly sleeping today and tomorrow. Aunt Cookie, Kim... my sister, will be trading places with daddy overnight.

Pray for
1: Healing of this surgery
2- NO SPREAD and NO ACTIVITY with his cancer
3- Miracles to continue to be performed in him

Proverbs 3:5-6 "Trust in the Lord with ALL your heart and lean not on your own understanding, in all your ways acknowledge him, and He will direct your path"
Clayton is a CHILD OF GOD who is being held firmly in His arms. We are believing for Total healing of our son. Please continue to pray with us.

Seriously??

Clayton telling Jokes on Radio Lollipop for all of the kids in the hospital.

If you know Clayton, then you know he has this adorable way of saying "Seriously??" It's with a cute little w in place of the r and a little lisp on the S. Totally cute... Well, today is just one of those days where you just say.. Sewiously??

We woke up this morning to the nurse telling us we were going down for our kidney test. He did awesome, even though he's still hurting from the port. He got up on the bed and "rode the ride" through the imaging tunnel like such a big boy. While he laid there watching "BOLT" on the tv, his daddy and I sat there praying that all would be well. Unfortunately, it is not.

He does in fact have a kidney blockage that is completely unrelated to the cancer. Apparently he was born with a kidney that doesnt work right. It works at 17% which is basically none. The doctors combined are worried that the chemotherapy would not flush out of his system appropriately and can not be given until this is fixed. So, after going through lots of options and talking with all of the experts, we've learned that Clayton will have his left kidney removed tomorrow. Yep, that's right.. my healthy acting busy little 6 year old now has to undergo another surgery to remove his kidney. SERIOUSLY

The expectation is that Clayton will be able to start his Chemo on Monday. This delay is very stressful to mom, even though his oncologist has promised us that it doesnt change his prognosis, which is good. We met with the pediatric Radiation Oncologist who was also very encouraging and made us feel better.

There's a strange calm in the room right now. I'm laying with Clayton remembering funny things and talking about silly times. It's precious and definitely an awesome moment with him. He just asked me why the page I'm writing on says "Clayton Wins". I told him, it's simple. He's a winner and he and God are beating cancer. He smiles and says "YEEESSSS"

A friend tonight asked me how Clayton was handling the information about another surgery. I told her he's okay, it's momma and Daddy who arent. She said, Isn't it a good example of childlike faith? The faith of a child is so great. It's sure, resting, calm and pleasant. After catching myself in the reflection of this huge window and seeing that I've aged 30 years in the last 2 weeks, I'm reminded that maybe I need to have a little more childlike faith, like Clayton. Rest in the love of God, place myself and my son in His arms and enjoy a little childlike faith. For tonight.. that's how I'm going to sleep.

Prayer points are
1- Smooth surgery tomorrow...it's at noon, by the way.
2- No pain for clayton
3- Of course, for his cancer to GO AWAY.. in the name of Jesus!
4- Rapid healing so we can get him moving on his chemotherapy.

The Port is in

So today my darling little super hero was very brave and had a port put in the left side of his chest. In case you don't understand what a port is, it's a central line in his chest that gets the chemo directly into the bloodstream. It was about an hour surgery and he did well. He woke up hurting and is still very sore and it's hard to move. We are promised that he'll not even know it's there after the soreness goes away. It keeps him from having to be poked every time he goes for chemo.

While he was having surgery, we met his oncologist, who is outstanding, by the way, and he talked with us about his official treatment plan and also about getting started. His first treatment does require an overnight stay. We have run into a complication because of the kidney problem we found while we scanned his body. Again, this issue, which I don't know the name of, is common in children and is usually never found. However, because we need chemotherapy, we need our kidneys to be working perfect in order to flush the drug out adequately. So, before we can get our first treatment, we'll be meeting with the urologist tomorrow and having another test done to see if Clayton will need surgery to repair his kidney before he can start treatment. Yes, this is scary for me and seems like another hiccup. However, it will save his kidney from damage, so of course, that's important too.

So, we could be here in a room at Tx Childrens longer than just these 2 days. Our prayer would be that they find that his kidney is ok and we start treatment. Also, that Clayton would sleep well and not be in pain.

Through this whole ordeal so far, my big boy has cried ONCE... ONCE friends. He cried when the nurse removed the tape that was plastered all over him from the bone marrow test. He didn't cry any other time. His siblings won't believe that since at home you can look at him cross and he cries. The Holy Spirit is holding him and protecting him. I know he is. I can see it all over the calmness on his face. Now, if we could just pray that the Holy Spirit will place the same calmness on my face and that the spirit of fear would not consume me.

Pray points:
1- Kidney test to go quickly and smoothly.. I have no clue what the test entails.
2- Chemo to be done sooner than later.
3- A good nights sleep for Clayton with his new port.
4- Please remember all the children here, as well as Clayton. There are hearts breaking all around me with parents for their kids. We are surrounded by it. Pray for them too.

We love you all and could not be doing this without your support and love.

And the Treatment Begins

Today we made our way back to Texas Children's to sit down with Dr. Murali and go over what we do to fight this awful cancer. To recap.. it is localized to the ear, and Dr. Murali feels confident that with chemotherapy and radiation we can get rid of it. He has suggested a 42 week regimen of chemo and radiation therapy. It's very confusing, but the doctors promise us that we'll get in a groove and figure out our new normal.

Today we had a childlife specialist come and explain to Clayton exactly what cancer is. She explained the awful cells that we have to attack. She also explained to him what a port is and what it will do for him. He will be getting one tomorrow at 1:00 and then going immediately to be admitted in Texas Childrens for his first chemo treatment. What we understand is that every third week his treatment will be done over an overnight stay at the hospital and the other two in between will be done as an outpatient.. possibly at Cooks Children's in Dallas. We're considering this just for the convenience...if there is a convenience to being on Chemotherapy. I guess we just take this one day at a time, one breath at a time, and treatment at a time.

We understand that we'll be homeschooling now.. a new task for me, even though I do have a degree in Early childhood :) I knew I'd use this eventually. Unfortunately, he won't be able to be in crowds for a while. We'll just figure this out as we go along.

As far as how we are doing... well, let me just be real for a second. I, personally, am hacked. I'm very much wanting to pick up the stool sitting next to me and shatter the window with it. I want to kick a hole in the wall I'm looking at. I want to take a baseball bat and beat a pinata up like its paper shreds. I'm jealous of healthy children, I'm missing my kids, I'm frustrated with my circumstance like no one will ever imagine. It's interesting, but for some reason, I'm not mad at God. I'm still holding His hand and trying to hear Him with me. I'm trying to understand what this is all about for me and my son... and my family. I still say.. God promised me GOOD... that's what He does it promise GOOD. " I will bless the Lord at all times! His praise will continually be in my mouth" I just keep repeating this to myself.

Our prayer points:
1- for the port placement to go easily tomorrow
2- for our first chemo treatment to be go amazingly well.
3- for our kids at home.
4- for clayton's ear to heal where he had his first surgery.
5- For the chemo treatment to go straight where it needs to go.

We rejoice that clayton's bone marrow and spinal tap came out perfect. Thanksgiving!!

Please keep us in your hearts and prayers. We can't make it without your support. We love you all. We are so thankful for everyone praying for us and Clayton. Please keep it up 6:16.