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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

1,000 and counting - I wish you were here...

Hi Sweetheart, I hope you are watching. I miss you more everyday and yet somehow I still manage to get through the day to day tasks, worries and joys of life... some-days like today I question how.  A long time ago I wrote a journal about the balance of LOVE and HATE and how the only way to explain how much I hate cancer was to explain how much I love you.   Today and everyday since we lost you here on earth, I find myself struggling through the balance of grief and joy. There isn't a minute that goes by where I don't feel like life will implode again... and just when I fear it the most, these wonderful people like your beloved Ms. Kelly and so many more (you know who you are and I love you!) show up to help every time... they share some of this grief in missing you... your gift of this foundation keeps us focused on joy and not sadness. Thank you buddy. 

You were learning about patterns in your school work when you relapsed.  I remember you and Ava chattering about patterns none stop. I see a pattern that has developed with the events for your foundation.  The day of the event - like yesterdays comfort pack assembly - I find that I am on a "high" so to speak, humbled and grateful to watch so many committed to keeping your legacy alive and helping "all the kids" just as you prayed.  It's true Buddy, the most amazing people are helping and it's all because of you. Then the day after an event I find myself in a slump, missing you so much.  When we talked about this foundation, you were suppose to be here.  You were suppose to help lead it.  

Yesterday, sweetheart, you would have been so excited.  You would have been so very proud watching your friends Nick and Jakob packing sibling packs with Ava... it made my heart swell watching them carefully selecting the items for the child that would receive them.  Ava had the two boys she needed there with her to do that.  She also had her girls, Brooke and Adeline right by her side the whole day... it was amazing Sam. People who love you came from all over to support this outreach created by you -  all of this was your idea...you are truly amazing and continue to earn your name Super Sam.   We have items from North Carolina and Florida to Denver and Michigan and most of the states in between, in those packs.  Sam we reached 1,000  packs (as you predicted) yesterday... yet, I find myself waking up in tears today.  They are tears of joy, to see your wish so profoundly displayed (see picture) is a momentous occasion for me.  Then, they are also tears of grief and sadness; where I find myself in this familiar place, struggling with balance of my emotions.  I am back to the balancing act of joy and grief, love and hate, Heaven and ... the "H" word as Ava says.  My heartache is constant, never wavering always at the top of my throat ready to crack and a blink away from tears... There is no doubt in my mind you and God had spoken before you departed us, there is no doubt in my mind you knew the seeds you were planting for us... a way for us to manage this grief that weighs us down. A way to turn that grief into action... to build us back up.  I believe after watching your baptism in our home, wheelchair bound at the time that your life was changed right then and there.  I don't know anyone who was present for that who didn't see it, how calm and peaceful and ... holy the room felt.  You knew what was happening in the months to follow... your condition improved and "Beefcake Sam" came to us healthier and strong... clarifying his wishes to us throughout... the specific discussions we had about how to and what to do to make your wish a reality are moments I now use and guiding light when trying to decide how to carry on your wish... you told us you would let your little light shine and shine it is Sam. That light, the light of your memory and all of these seeds you sowed for us are leading us and giving our grief a mission while carrying out yours. We will forever "Let it SHINE."



As a sidebar: As I sit by the window writing, a cardinal has been watching in from the deck... thank you for being with me Sam... always. 

Thank you to Mom, Heather, Melanie, Kelly, Erin, Emily, Chelsey, Kim, Tammy, Ariel, Tina, Teresa, Gloria, Michelle, Katherine, Marita, Peggy, Kristie, Amanda and all of children for coming out to help with the assembly and first delivery of 2016 to University Women's and Children's Hospital. A special thank you St. Peter and First Christian for allowing us to use space for assembly and storage of these wonderful items!  Thank you to the thousands of you who help make this happen from all over the country!   





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Comments

4 Comments

Terrie Jordan
By Terrie Jordan
Wow, donations from so many places - Sam's light is shining so BRIGHT!! <3
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1 person hearted this
Manya Stone
By Manya Stone
SO Cool! Super Sam's legacy is inspiring and so are you.
Love, Manya and all your friends at the Jax Ronald House
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2 people hearted this
Brian Pfeifer
By Brian Pfeifer
Cassie, your ability to write and journal your emotions and feelings are Inspiring, and courageous to read. I am very happy of the Success that your foundation has established, in making a Significant difference in other people's lives affected with Cancer. It is impressing, keep up the Great work, and your dedication, in Honor of the legacy that Sam left for all of us to admire.
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2 people hearted this
Kim Lorentz
By Kim Lorentz
Thank you for sharing Sam's wishes with our community. His wish has encouraged many lights to shine.
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2 people hearted this