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In Honor of Sam

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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 little distraction....BUT A BIG DEAL

Yesterday would have been one year since we checked in to Bone Marrow Transplant.  I remember so vividly the worring and stressing and making sure I packed everything exactly right, as if the way his "soft pants" (how Sam reffered to them) was packaged would be life and death.  I was SO careful and over did everything.  I was so focused on we just have to get through this one last thing and we will be done! ONE last fight to "kick cancers butt."  I have a video of Sam leaving the house in his car seat saying "Watch OUT Cancer... I'M COMIN' FOR YA!"  So proud of him... always. 

Yesterday, I received the great news that the Super Sam Foundation is now active on www.smile.amazon.com.  While I purposely haven't used this platform to advertise for the foundation, I am going to say that yesterday, Sam took care of us.  I tend to flashback alot and I assume thats why everyone says the first year is the hardest.  I have been thinking for a few weeks now about the prep I had worked so hard on and fretted over so much... in short dreading the dates ahead.  Then I received the awesome news that the foundation was now active on amazon, something that took three months to get registered.  All of the sudden, I was in a better mood.  

I spent the rest of the day in a thinking forward in a productive, healthy way... I feel like I am keeping my promise to him... to fight this awful dispicable disease...for "all the kids."

What started as a rough day was made more bearable with a little distraction: but a BIG deal.  Please considering selecting the Super Sam Foundation as the charity of choice for your Amazaon Smile account and they will donate .5% of your purchase back to SSF, without costing you anything. 

I just read an update from one of our friends from BMT, he was re-admitted today for lung/airway problems caused by the treatments from battling luekemia, NOT luekemia itself.  YES, praise the Lord he is free of cancer and we certianly pray hard he stays that way... but it is important to me to mention the treatments to beat cancer absolutey need to be better.  Please say a prayer for Glenn and "all the kids in Children's Hospital."








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Comments

5 Comments

Becky Hornbuckle
By Becky Hornbuckle
May God bless and watch over you, Matt and Miss Ava today and always. Sending you my love, prayers, support and sympathy.
I also wanted to let you know we have started making all of our Amazon purchases through the Amazon Smile site, and have listed the Super Sam Foundation as our charity of choice. Together we will KICK CANCERS BUTT, for Sam and all of the kids out there that need us so much.
Sharon westerfield
By Sharon
This is great news. I just signed up. I didn't know about Amazon Smile. I will pass the word along to friends and family.
From your balcony
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Terrie Jordan
By Terrie Jordan
I made the switch! Thank you for sharing :)
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Bev Adams
By Bev
How awesome is that! I have always used wounded warriors on Amazon but will switch over for super Sam since it is a home town project.
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Carol Markway
By Carol Markway
Thank you sweet friend!! So excited for SSF that you are teamed up with Amazon!
Will be relieved when all tests are back!! Thankful you are in our lives, hard to believe it's been a year already.
Much love!!
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