This is the word that has officially changed my life. Rhabdomyosarcoma... There I said it. Clayton, my precious 6 year old son, has been diagnosed with this type of sarcoma. We are scared...terrified to be more exact, and just numb. At this point I am unwilling to make my precious a Caring Bridge site. Unless you have been in my shoes, you can't understand why that is difficult. We will see what time brings, but it is my prayer that we will not need one.
Because we have so many precious and dear people who love us and have agreed to pray fervently with us, I've decided to make this blog www.ClaytonWins.blogspot.com for you all to keep up with his progress and to report certain prayer points with you all. One of our pastors suggested we ask our friends to set an alarm during the day as a reminder to pray for Clayton. I'd like to ask all of you to sit down with your iphone and program in 6:16 am and pm. This is Clayton's birthday. We are believing for total healing and many more June 16ths to celebrate with him.
Here is our story. Right around Christmas, Chad and I noticed that Clayton's right ear had a little bit of an odd smell coming from it when we would kiss him goodnight. Nothing offensive or really awful, just different. Being that he had no fever, no complaints and was just fine, we ignored it assuming that he had some wax in there. Well, a few weeks past and Clayton was sitting on my lap watching Caroline do her gymnastics. I was whispering in his ear and he wasn't responding to me. He just was ignoring me. The next morning, he had a doctor's appt. I took him in, and he did in fact have a growth in his ear. We thought maybe it was a polyp. He was referred to our ENT who prescribed ear drops thinking that it would shrink the polyp. Two weeks later, on Friday the 4th, the polyp was still there, a little bigger, and surgery was scheduled for Monday, February 6th. Please let me say... I knew in my heart that it wasn't good. No one told me, I just knew.
He had the surgery where about a thimble full of mass... or tumor, was removed from his ear and sent off to Pathology. By Thursday afternoon at 2:30 I got the call no mom ever wants. "Mrs. Castle, This is Dr. Holland's office. Dr. Holland would like you and your husband to come to our office without Clayton." My heart sank. My legs sank to the floor. My children panicked, and got Mrs. Heather who peeled me off the floor and held me until Chad came to get me.
We walked into Dr. Holland's office with all of the fears you ever imagine you will have.. and I do hope you will only ever have to imagine, and we sit down to hear the news that our son, who is NOT sick.. at least to anyone watching him, has Rhabdomyosarcoma... Cancer. I remember looking straight through Dr. Holland and not hearing a word he said except, Cancer, MD Anderson and I'm sorry.
We walk out in absolute shock and horror. That's just how you feel. We have the job of telling our kids that we are embarking on the fight of our lives... and Clayton's.
Chad received a call from a friend who has a connection at Texas Children's Hospital in Houston. Turns out he is on the board of directors and is close friends with a man who, through God, will become our champion.. Dr. Murali Chintagumpala. By 9:00 PM, on the night our diagnosis was presented to us, we are on the phone with Dr. Murali in Houston who tells us to come on Friday with our Pathology samples and with Clayton.
We go to bed, don't sleep, but lay in bed until Friday morning, get up, fight the Pathology lab for our "specimen"... the awful CANCER that has invaded my darling son... and head with our little man to Texas Children's Hospital. We ride in almost total silence... still both thinking we are going to wake up from a horrible dream.. or should I say.. nightmare.
We arrive at Tx childrens where there are sick kids EVERYWHERE.. some reassuring to see, some not so much. Clayton is absolutely overwhelmed by the cool kid stuff EVERYWHERE. He still doesnt understand what the big deal is. We see Dr. Murali. He just wants to reconfirm Clayton's diagnosis by rerunning the labs and tells us we'll need to come back at the beginning of next week for complete scans of our little man to see if this awful cell has spread over his body. We drive home and just wait... just WAIT. Do you have any idea how hard that is?
When we were almost home, we received the call from Dr. Murali that said that he confirmed clayton's diagnosis of Rhabdomyosarcoma and that he would call first thing Monday for our appointments for MRI scans, bone marrow, xrays, blood work, all of that to determine what stage we're in. Where we stand, what we face, what Clayton Faces. All of that. So we WAIT for the phone call. Our bags are packed, our hearts are scared, our son is still happy.. unknowing.. carefree... beautiful... strong..and misbehaving :) He is perfect with a horrible disease growing in his EAR.
Please pray for us specifically for the tests this week to be encouraging. For healing, for grace for our other children. They are terrified too. Their hearts are heavy.
Here is my resting point... The Lord has promised GOOD to me... GOOD... He has promised GOOD.. I am looking for Good... Please feel free to share verses and encouragments with us. Please tell us when God has a word for you pertaining to us. It's amazing how the verses just come when you need them. As we were walking into Texas Children's Friday I just had verse after verse coming to mind assuring me that we are being Held.. Carried
Please hold us up.