Sam’s Story

The original story and first battle:
Many of you know that for about a month we have been watching and seeing multiple doctors to determine what a bump on Sam's nose was. He had gotten into a patch of seed ticks while picking blackberries with Matt and Ava. Sam had them so badly that he ended up with over a hundred tick bites. Matt and Ava had a few, but nothing major at all. While treating his bites, I happen to notice a spot on his right nostril that seemed inflamed. Logically, we thought this had to be a reaction of some kind to the tick bites. We took him to the doctor and he was put on antibiotics and we watched it. Over that weekend it seemed to be getting bigger, I took him back to the doctor and was referred to an ENT.  We were thinking at the time it was possible one got in his nose and bit from the inside. The ENT reacted very quickly and did surgery the next day, planning on being a very simple procedure to lance the growth, drain and clean it out - of course all the time assuming this has to do with the tick bites.
 
While Sam was in the surgery (that we were told would only last about 15minutes)Matt and I commented at about the 25/30 minute mark that we must have mis-understood the timing; probably what they meant was the actual procedure would only take 15 and of course it made sense that we would have to wait longer than on 15minutes....silly us and our poor listening skills.  The Doctor came out and explained that he was surprised there wasn't an infection and it appeared to be a lymph node tissue but couldn't figure out why it would be so inflamed or in that exact location. He explained that he sent cultures for full work up to determine what it was.  It's worth mentioning at this point, that Sam had charmed everyone in that hospital that Saturday morning; from receptionist to the Doctor and nurses. He told them all about how he was going to get a new Ninja Turtle after this and didn't want to be a doctor when he grew up but an electrician, everyone kept going on about him.
 
So the next thing for us to do was wait... we waited and waited and waited. Many possibilities running through our minds and we did see the doctor a few times while we waited to check his nose, and the growth seemed to be coming back. Still, we waited some more. After almost a week we found out the cultures were fine and the pathologist said it looked "strange" and he sent it to University hospital to get a second opinion. In the meantime we did a CT scan which only showed the bump we knew about. This was good - it ruled out some possibilities. Then we waited some more. Late Monday afternoon I received a call from our doctor saying the pathology tests were back from MU and Capital Region with the same results, then telling me they were being sent to the Mayo Clinic. At the sound of the name Mayo Clinic, my heart stopped. For good reason, he went on to explain that this is not an easy call for him to make and Sam has Rhabdomyoscarcoma a very rare form of cancer. He explained that Rhabdo means skeletal and myo means muscular and of sarcoma being a type of tumor. 
 
Dr. Howland was wonderful and stayed with me on the phone until I was ready to get off while explaining as much as he could, as kindly as he could. Somewhere in all of it, I was able to scratch down a very bad spelling (spelling is not a strength of mine) of the diagnosis and that was about it. We agreed, Matt and I would meet him at his office the next morning. Like any good parent - I began to unravel. By the time I got home to tell Matt I had semi-composed myself and we put a movie on for the kids and prayed.
 
The next day, we met with our ENT who apologized for not knowing more about this form of cancer and vowed to do anything he could for us. He really is outstanding man. He told us he felt like the tick bites were Gods way of pointing this out to us and we are lucky because we caught it so early. We agree with him, for the tick bites to be completely unrelated, the coincidence of timing is unreal - so unreal it has to be from our God.
 
At this point Aug.31st,  we have been lucky enough to get into Children's, but also to have the majority of tests completed at the end of yesterday. This is great news because now we will be able to meet with his oncologists and ENT on Tuesday or Wednesday.  It is possible that Sam will have a surgery to remove a tumor early next week, there may be more and that's what the scans will tell us. Of course we pray it is only the one. If the scans show more tumors the surgery will likely be postponed and go straight for chemotherapy and radiation.  
 
Rhabdomyoscarmas are very rare and typically only have around 350 diagnosis' per year and almost always in children 1-5 years old. At this point it is known that Sam has a soft tissue sarcoma pending scan results on others. Ava is not thought to be at risk at this point, although Matt and I hope to have her scanned as well - just to be safe.

Ava is also a huge portion of our concern and how she will handle kindergarten without her twin brother (for a portion at least) but her best friend. We have enrolled her in dance again to try and make sure she gets some individual attention from Mommy and Daddy too. Our fear is that Ava will have to sort out her emotions and curiosity while answering others too. She knows what is going on, but on a 5 yr old level.

We are grateful for all of our support we belong to an amazing Church where we couldn't be happier, the kids are at a great school that I am even more grateful for now and we have my parents 7 miles away.

Please check back and above all else please pray and pray often for our Sam.

The beginning of the second battle:
Sam was declared NED - No evidenece of disease on St. Patricks day March 17, 2014 after an 8 month battle with Rhabdomyosarcoma undergoing 34 chemos, 20 proton treatments, 6 surgeries and one month away from home for treatment. On March 19th, 2014 we were told that it's back and with a vengeance... that our sons best prognosis was "hope." His new battle is against the same rhabdo monster only this time in his bone marrow in almost all major joints; shoulders, elbows, wrists, fingers, hips, knees, ankles, toes, as well as the spine, liver, lung, and shoulder blade. We need a miracle. We were told this is off the charts rare and Sam is basically a new type of case.  We sought opinions from four top pediatric oncology hospitals and all had similar opinions on treatments.  "There is no protocol for this type of relapse, its unheard of" we were told.  We agreed on a plan of action with the doctors that we feel makes sense, it's hard to say we feel good about any of it, except that God is on our side.  We have experienced more than once the presence of God in Sam's fight, we pray for his intervention and to guide our doctors toward a cure.

Sam's first round of chemo for Battle #2 started March 25, 2014.
 

Latest Journal Update

What a difference a scar makes...

one week before surgery
one week before surgery

Last night I found myself staring at a beautiful picture of my pre-surgery, blond haired, blue eyed, 5 year old, tough, little boy.  It is from a session done after he was diagnosed, and before the Hell on earth started.  It was one week before he had a 12 1/2 hour resection surgery to remove, what we thought was, a tumor the size of a pea in his right nostril.  We knew all along the location of the tumor would require a major resection surgery, but it turned out to be much bigger than expected.  That really was our first look at how cancer is never predictable. This surgery was followed by a major reconstruction surgery only one week later. 

[The tumor had grown substantially in the three weeks from when we first saw the bump to surgery and had spread under his cheek.  Sam's right nostril was removed, along with a half-dollar size portion of his cheek and went back to his nasopharnex. Dr. Leonard (amazing surgeon/ENT) went as far as he could safely yet we still didn't get the margins. At this point we were too close to the brain.] 

 We were all in, we would do anything, we didn't care what he looked like or what scar this would leave, as long as it took all of this evil out of his precious little body, we were on board.  With that said, any parent I think would fear the pain and agony of this type of surgery... then we worried about the scar it would leave.  Yes, we realized a physical scar was no big deal in the grand scheme of things but we still didn't want to see his perfect little face permanently marked by cancer.  We were nervous about how Sam would handle it (and Ava) and before the surgery we started talking about how tough a scar can make you, Daddy showed him his nasty scar on his leg and the rest of us pointed out our diferent scars all to show him that it's ok, it makes us stronger. Sam wasn't so worried about the scar, nervous about the surgery yes, but not the scar. 

After the surgery and then a 6 1/2 reconstruction surgery a week later, Sam was more handsome than ever.  He had one heck of a scar, but to Dr. Leonard and Dr. Chi's credit, it was beautifully done.  (They used a section of cartilage from behind his ear to form a new nostril - amazing.) Super Sam was born.  We told him the night before his surgery that his was our super hero, he had super strength, courage and that God would take care of him.  We told him he was our SuperSam... and that he IS.

We worried ourselves with making sure he was confident in his new look (this carried over to losing his hair also) and talked about it often, not a day went by that we didn't all tell him how handsome he was (I still tell him this daily) inside and out.  He became proud of scar, not ashamed of his bald head and confident all around about his fight with cancer.  We were are all so proud of him.

When I found myself staring at this picture my first thoughts were how beautiful he was there... those eyes....that smile...just gorgeous. (I may be a little biased:) Then I realized when I think of him (every minute of every day) I almost never picture him like this.  Never without this scar. Sam found a way to use his scar to show off how tough and strong he was.  He would point out a perfect strangers scar and show them his... I remember in Florida, Sam telling a man, who had a very tough scar on his forehead, that his was where he kicked that cancer right out of him...then asked the man if his scar was from kicking cancer out too.  The man teared up and told me he has always been self-conscience about the scar, but starting then he would be proud of it.  (He never said what it was from, but seemed touched by Sam's innocence to it.)

As I was starring at this photo, I realized we are the ones with the scar now.  Ours aren't visible, but they are oh so painful.  It makes me think of how many people are out there who have these scars that aren't visible... I was thinking how we should all be a bit more sensitive to the struggles others may face internally.  The scars we can't see on the person next to us... Then I was back to tears, thinking of my perfect, tough, handsome Mr. Man who already understood this.  After all that's all he really wanted was to help others who were hurting... to help everyone and more than anything to help "all the kids."  Now, I am left trying to think like this and I think of  all the parents...all the scars.  I found that I woke this morning still thinking.  So many have been completing random acts of kindness in honor and memory of Sam, helping others simply to make the world a little bit better.  How wonderful... what an honor.  What an honor to get to be Sam's mom, to know him so deeply... to understand him and to still be learning from him.  I will do my best to think of the scars we can't see just as much as the ones we can.  I don't know that we will ever find strength in our scars or that it will make us any stronger, but it does give us perspective and I pray that in time we can use that to help ourselves and others. 

As always, thank you for continued prayers.  Please continue to pray for all the kids who bear scars no person should have to endure and for their families whose scars we can't see... for everyone's scars. 


The first picture is the one I found myself starring at, the rest are how I see him when I close my eyes.  I am so glad, I have so many pictures.



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Comments

6 Comments

Sharon westerfield
By Sharon
I just now got to read this...My goodness...Your "word pictures" are so beautiful...My heart continues to pour out to you and your precious family!
From your balcony,
Sharon W.
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Laurie Mayes
By Laurie Mayes
Wow Cassie you have such an amazing way of expressing your personal and deep feelings! Having compassion for people we come in contact with every day is something that God has shown to me throughout the years! There are so many sad and hurting people that we run into almost every day!!! Thank you so much for sharing, and God bless you, Matt, and Ava♡ You are all in my prayers daily!
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Cheryl McGee
By MIke and Cheryl McGee
Keeping you all in our prayers. God Bless you all!
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Catana West
By Catana West
Praying for all the scars in life and that God heals them all with his love.
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Jennie Rees
By Jennie Rees
So very true, so very thoughtful.
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Bev Adams
By Bev Adams
The hidden scars can be the most painful and people get judged for what others think they could be doing because the scars can't be seen. I sometimes think those with visible scars are luckier, even tho that sounds nuts. But at least others can see that you have been through something hard when they see the scars. Bless you, the prayers continue.
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