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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

Expiration Dates

Today is Septemeber 17th.  Since this journey began dates have stuck with me, I think it's probably becuse of the very profound and devestating nature of so many of the events but nonetheless they stick with me.  Dates are funny things when you really think about it. We honor all kinds of dates everyday: wedding anniversaries, birthdays, job anniversaries but then we also watch dates all the time don't we? We pay attention to the license on our car to make sure it's in compliance, we watch dates on your food to be sure it doesn't spoil before its used and we even watch dates for shopping and sales.   

Dates for me now seem to represent a whole lot of destruction versus joy over this past year.  I am sure over time I will find that pure joy again... of course the day Sam and Ava were born (June 3rd) will always be the center of my joy but it's bittersweet now too... it hurts as a reminder of what we don't have anymore... a life that expired too soon.  
Last week I opened the refigerator and, as I do each time, I looked at the expiration date on the milk.  It's like that half gallon of skim reached out of the fridge and punched me, knocking the wind from my lungs and the balance from the legs.   It's expiration date was September 19th, 2015.

September 19th, seems like a crappy day for anything to expire in our house and that milk will not go to waste... it will be used.

The sad truth is, we all have expiration dates: some sooner than others unfortunatly...  
 *I refuse to think of Sam's life as an expired one.
 *I refuse to let his precious life be wasted... after all he didn't.
 *I refuse to believe that he expired... I think he was promoted to Heaven.  

His life was short but meaningful... at such a young age, he taught us so much.  He didn't waste his time, I will not waste his memory... Just as the milk nurishes a body, Sam's legacy will continue to nourish my heart and soul.  

When I am overwhelmed and feel control slipping away  from me, I tend to get some sort of sign of encouragement from him.  Whether it is the cardinal who visits us daily or a feeling, a song, a cloud... a million little things... he is still with us.  We will not let his expired life on earth be a waste. We will continue to honor his legacy. 
Tomorrow we will travel to Washington DC and we will spend the evening on September 19th with candels lit in front of the White House in honor of our son.  We will be joined by thousands who represent kids from across the country who are fighting and who are watching from Heaven.   

It is no secret that these next few days will bring us to our knees more than normal... it brings up so many memories and for the first time... they aren't happy... nothing about them.  They are filled with anguish, devestation, fear, heartache, helplessness... none of those feelings have expired, they stay right underneath my exterior at all times.  
I feel like I have gotten better at pushing through, but am always one blink away from tears.  So many times friends have apologized for causing me to tear up but the truth is, I appreciate talking about him.  I understand how hard it is for our friends and family, never wanting to set us off or cause us pain but talking about him... hearing and knowing that others think of him is an honor is theraputic for us... please don't let my cracking voice or glassy eyes discourage you from mentioning him.  He and his sister are the lights in my life.... lights that will always SHINE.  (This goes for any bereaved parent I would think.) 

As this weekend will be the hardest for us yet, we are striving to put ourselves in a place that will be empowering, not devastating.  
As you start your weekend please think of all the kids out there who are fighting these awful battles... 7 kids everyday join Sam from the horror of cancer, please remember their families too.  If able please light a candle with us on Saturday, leave your pourch light on, let a lantern go, a balloon, say a prayer and think  of all the kids and their families. Don't let their legacies be a waste... lets make sure they mean something.  

"For All the KIDS"... Sam's Legacy.  

21 people hearted this



Brian Pfeifer
By Brian Pfeifer
I will Always cherish my one visit, to meet Sam at Children's and to also try and brighten his day, along with yours also Cassie. I left feeling that he brought perspective on how we can sometimes take Our lives for granted each day, he did not, he chose to be the person making the footsteps, for which we can follow, knowing he would be the Inspiration to people that he met. He had that in his personality, and the way God chose to use him. He will be in my Heart, Soul, and determination to again ride with his memories leading the road in front of me, in "Pedal the Cause" this coming Sunday. Nice journal, that was written........
Jennie Rees
By Jennie Rees
That's exactly right!! He was promoted to heaven!!! I have no doubt he is a part of God's executive staff.....💞💝💖
Darla Backer
By The Backer Family — last edited
So beautifully said. Please know our hearts and prayers go with you as you make this incredible journey to honor your precious Sam and keep his legacy alive! What an incredible difference and sacrifice you are making for all kids through Sams Foundation! May God Bless You,
Lynn Meoli
By Lynn Meoli
The Meoli Family will be remembering Sam and all the Kids on Saturday.. as always, Blessings to your Family.. Remain strong for Sam.. Take Care!
Terrie Jordan
By Terrie Jordan
For ALL the KIDS... Sam's light will forever shine! Love and hugs to you all, safe travels!
Linda Davis
By Linda Davis
Such a lovely way of sharing.. thank you.
Carol Markway
By Carol Markway
Beautifully said, Cassie. And yes, we want to hear our dear son's name and hear stories. Even if it makes my voice crackle and my eyes glassy, there is nothing I'd rather be talking about!!
2 people hearted this