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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

A life in black and white...


A friend of mine and I talked recently about how writing these journals are so much harder now. When our children were with us, it was easier to write of hope and progress. Since our children went to Heaven, yet we haven't changed here on earth... we are still broken nearly eight months later.  Now that we are both living without our children; without their strength to hold us up. Where do we fit back into the living world?   In an effort to help or for the lack of knowing what to say, we are regularly told things like "He'll always be with you, even if not on earth." While my reasonable self, agrees with this and I know it to be true; my newly struggling, broken self wants to scream... 

"NO, he should be here... with me, with Ava... mimicking every move Matt makes."  One day last fall, I heard another bereaved parent (bereaved.... that could be a whole blog in and of itself) say exactly this in front of our Pastor, who is also this parents father in law.  Our pastor didn't correct him, reprimand him or even give him a disapproving scowl... his nodded his head and closed his eyes with deep understanding.  I realized in his honesty (and bravery for speaking honestly) that I was allowed to have my own opinion and voice regardless if I knew God saw it differently.  I think God understands my grief. I  also know that God loves His children very deeply and (I think, hope and pray) He "gets it." He loves our Sam and felt he needed to be home, his permanent home, just as I feel he should be here with me, Matt and Ava.  Its similar in my mind. 

He SHOULD be here, collecting dollars every-time someone says stupid or hate.  (Unless it's used to describe cancer - that was allowed.  His little superman wallet still bulges from all the dollars he collected calling many of us out who used "bad" words.)

He should be begging to open up the pool... his make-a-wish pool.

He should be teaching Parker, his dog, how to roll over and beg.

He should be HERE with Ava, pushing her on the tree swing. 
He should be protecting her (like he always did), wrestling, racing, learning all the world has to offer.  

He should be there to watch Gavin graduate and Ms. Dani get married. (After all, they are family to us, Sam was all about his family)

He should be here packing comfort packs and mailing them to "all the kids." 
He should be here building his foundation together with his family, friends and supporters. He would have been (and is from Heaven) so excited to see so much taking off with it. 

He should be pitter-pattering behind me as I go to bed every night saying "I wanna sleep with you tonight momma." 

I should see him everyday at the breakfast table... not at the cemetery after work.  

Ava should have her brother to grow up with. 

Why, why would God let this happen? I don't understand.  I have watched as the kids we knew in the fight join Sam in Heaven, while others no longer battle cancer but still find themselves fighting horrid side effects of treatments (that are 20 years out of date).  Some are doing well and I am grateful for them and their families, but none of this is ok.  

I have been asked more times then I could count  "how do you still believe in God?"  
For me it's simple: not easy, but simple.  I wasn't suppose to have children at all.  Our church, our friends and family all prayed and prayed and prayed. I had one surgery/procedure after another not work.  I remember going to a Women of Faith conference with some truly beautiful women from my then church and hearing them pray ...for me??? My problems aren't theirs, 'please don't bring attention to my failures' I kept thinking: embarrassed a little and humbled a lot.  They all laid hands on me (first time I had ever even witnessed this let alone be the focus of it) and we prayed.  We prayed for two children, not just one. They prayed for one boy and one girl... Isaac and Isabella (Matt hadn't weighed in on these yet).  It was only a few short months and I was pregnant with twins... one boy and one girl. My miracles from God. 

"How do you still believe in miracles since you didn't get one?"  
 
I admit I didn't take this one too well when it was posed to me.  How could this be questioned? Look at Sam, look at Ava, how could I not believe in miracles. What was even scarier is that this question came from my own mind.  Who was I becoming? How could I questions such a thing, I have spent my entire life with a deep belief in God and His abilities no matter the situation. I forced myself back to my figurative feet and made myself take a look at my life... I tried so hard to do it from a view that Sam might see me from looking down from Heaven.  This person this new Cassie is not who I am.  It is not who we taught our son to be. it IS not what I believe.  It is my grief and despair playing tricks on me.  So many were kind and generous enough to pray for Sam and our family;  even to organize prayer vigils and fastings. We rejoiced in the small signs that God was at work in Sam and in us. We never lost hope, we prayed... we praised... we begged and we pleaded with God.  We know now, that Sam's cancer was far more aggressive then we had known in the beginning.  It was the blackberry picking trip and those seed ticks that pointed out to us the tiny spot in his right nostril.  In the three weeks it took to diagnosed biopsy and develop a plan the tiny spot now swelled into his cheek and back into his nasopharynx.  Hindsight being what it is, it is clear that had it not been for those seed ticks Sam's cancer would have shown us just how aggressive it was before we looked for a diagnosis. I believe we got 13 months to see who Sam really was and I believe that was a miracle.  I do believe in miracles large and small, yes I do.  

Life and death have not turned out to make sense to me, but I do remain confident that I have not been forsaken. Have I fallen into this trap of selfish doubting, yes. I certainly have. Will I again?  Quite possibly.  While my stages of grief are unpredictable (to me at least) and I feel like I am in an endless battle trying force joy into my mind, while keeping guilt out.  I have to look around me and see that; while my beliefs are the same, I am more blunt in my description of them. I feel like the world is made up of fairly basic choices that I seem to be viewing in a black and white format.  The gray seems to be missing for me: "Is this best for Ava?" "Does this glorify God?" "Will this make Sam proud?" IF all of those are answered, my thinking is over. period. end of story.

While I pray daily for children and families all over the world, I am humbled by four words..."Thy will be done."  In the end, when the battle is done, too often the debate turns on God.  Is this fair? No, it's not. God doesn't turn on us, but it's interesting that the debate only turns if the ending doesn't go our way. If it does, we praise Him and wonder why He spared us more pain.  I do not pretend to understand any of this journey, this is simply how I view it.  I believe in the end, God has a plan for all of us. Part of me feels like we are too confident in our beliefs that we know what God's intentions are for us... like I said, kind of blunt these days. Too presume we understand what God's intentions are, is to presume we are capable of the same comprehension for our own lives as that of our Father...all the way up in Heaven and creator of the world... seems a tiny bit arrogant to me.  

With that said I remember be certain... so very certain we would beat this evil thrust upon us.  I remember a very dear friend telling Matt and I that they "hope" Sam beats the odds. Matt and I drove home that night talking about it... how could they say that... what do you mean "hope?" Sam will beat this... Sam will not be a statistic... I am ashamed to say, we were arrogant...it is not to say the reality and weight of it all wasn't sitting lumped up at the top of my throat and ready to stream down my face in the blink of an eye.  We were coping, staying strong, refusing to lose our fight.... but fearing the worst in every smile, hug and sound.   

Fast forward to today; to this moment when three kids who we know are fighting to live.... no longer fighting to just be cancer free, just wanting to keep their life... to stay with their brothers/sisters and parents, yearning to learn to read, to shoot a basketball, to have friends.  They, along with their families, just want a chance to live together free from fear and pain.  In those moments, days, weeks and months to follow we realize Sam was ok with it, he understood and never cried, not once. He knew he was going to meet God and I think he was ready for that. We prayed, praised, pleaded and begged again, but this time for peace, for gentle passing, for comfort.  We told Sam it was ok, we would be ok and would see him again.  We promised him we would fight here on earth for all the kids, we promised to take care of Ava. Then in those hours we learned the real meaning of those four little, yet powerful words...Thy will be done.  

Sam's job on earth was complete, regardless of what this selfish mom wanted.  I am proud of him and how he handled his battle, he always praised our God, never forsaking or doubting.  Some may say, "he was only six, how could he have comprehended anything that was happening?" To that, my reply is simple....he is Sam. 


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Comments

7 Comments

Sharon westerfield
By Sharon Westerfield
Precious Cassie
Thank you again for sharing your deep thoughts with us as you continue this hard walk in faith as you grieve about Sam. I'm learning from you and I'm still in your balcony.
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Jennie Rees
By Jennie Rees
It always amazes me, your ability to view the entire spectrum and not only feel your grief and anger. Every message I've read has been this way. Maybe the grief and pain and anger hid that for a little bit, but I think the fact that you are realizing that you cannot let it over come your entire life is quite possibly the next stage of your grieving process. I value your outlook on life and God. I share a lot of the same beliefs. Some things in life we don't understand but when God takes someone so valuable I just try to tell myself that he "needed" him or her. Maybe in that short 13 months that Sam was showing you how amazing he is, God was also giving you a sign that Sam's amazing grace was needed and would be put to good use in heaven. This may be kind of silly, but maybe sometimes his creations are so good that he just says to himself, "I better get that one back", to help others from up there through their journeys in life. Rest assured he is doing great things up there!!! I know that doesn't take your pain away, but it might add a little peace knowing he's still your Super Sam in heaven. Maybe God just needed to capitalize on his Super powers. At least for me it's the only way I can find any kind of peace through situations like this. I'm sure this would probably all be challenged if I were you and it was my Sam, so I don't know that any of what I'm saying does any good. But I just have to have faith that God needed him. It's the only logical explanation considering how wonderful he is. Your family is always in my thoughts and prayers......
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Tammy Dickerson
By Tammy Dickerson
Hugs and Prayers. Always great to hear from you! I will lye you know it gets easier by the day! There's not a day that goes by that u don't think of them. I lost my Mom to Ovarian cancer Dec 20th 2013.
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Vickie Gerlach
By Vickie Gerlach
Cassie, your words always fill my heart and brings tears to my eyes..
There are no words! ❤️
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Bev Adams
By Bev Adams
I wish there were words that could give you true comfort but unfortunately as long as we are earth bound there are none. Jesus is with him and that much can be a small comfort but doesn't help when you miss him so very much. However I am sure he is looking down on you and is so very proud of you as well.
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Heather Patten
By Heather Patten
I don't think doubt is selfish. It is a reflection that you are honestly engaging with your faith, rather than blindly repeating what someone else has told you is "true."

"Thy will be done".... I played a cd of background music during the prayer vigil the night before Sam went to heaven. One of the songs was "I Surrender All." That song never meant as much to me as it did that night.

So much love, my friend, now and always.
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Natalie Koch
By Natalie Koch (NANNY)
Yes, He is SAM!
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