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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

"It is nice of God to bring the sun up"

I was looking for a picture on my personal FB page from several years ago and was grateful to have found this one from Oct. 22nd 2011


      "Sam and I watched the sunrise together (again:) this morning and Sam says 'it is nice of God to bring the sun up!! I like Him, He is nice.' lol It doesn't get any better or more simple that that!"


Oh, how I am thankful to have this... I remember that now.  Matt would leave at 4:50 am for work and Sam would be up before he left or right after.  We had a lot of good snuggles and talks during that time.  I am blessed to read what we have known all along about Sam's faith, it was simple, thankful, appreciative and he didn't take God for granted.  I think he knew I needed to see this... I needed to hear read it, it Sam's words. 


There isn't a minute that goes by that we aren't in anguish.  With the holiday season officially upon us, I struggle to know the right moves to make.  Do we carry on, do we run away, do we face it head on, do we stay still and go through the motions???? I have no idea: like I told a good friend recently, "it's one day, one step at a time."


Ava has good days and then bad... it's so hard to predict it (triggers) for her. We of course expected some of this with Halloween, so it isn't as if we haven't considered it, we have but we are simply approaching it with caution. (that could be a sign I should wear each day..."Approach at your own risk, cries unexpectedly, laughs awkwardly and loves deeply."  I mean this to be chuckled at, but it's kind of true too.  I am controlling it better, but I am not sure my eyes will ever work properly again... it's kind of a permanent leak that can be stopped up when required. 


Ava is very excited about her costume... Maleficent.  She will be cute and we hope to have a great day and night.  She is asking a lot of questions, particularly about God and how this could happen.  We have talked a lot about faith and what that means.  And I told her that it's ok to ask why and want to understand, I told her I think God spoke to Sam long before he passed and explained how he would be walking with Him soon.  I explained that I don't understand and referred back to Father Franks statement to us "when I get to Heaven, I'm going to have a few questions." I tried to let her know it's all perfectly normal to feel.  She wanted to know why God couldn't have taken us all, so we could be a family still... a family of four. 


To hear a 6 yr old grieving sister talk about wishing for rapture is something else.  She of course doesn't really know the term rapture but it was  a deep conversation nonetheless.  I am so glad she is talking, from everything we are told, that is a good sign.  She draws more now than ever before and likes to leave reassuring notes for us everywhere telling us how much she loves us.  This is new, although she is at the right age for it too, so it may just be that... I don't know. 


Sam's "100 days for comfort drive" will be over this Saturday... that would have been Sam's 100th day of transplant.  It's scary how many don't make it through to day +100.  We are grateful for those who do, but hurt so badly for the others we know who didn't make it to the landmark too.   For me, possibly because of the drive, I think November 1st will always hold a tough spot on my heart for the "what should have been" along with the anniversaries and birthdays. 


We are considering getting out of town again for Christmas or right before or right after... just something to break it up I think.  It dawned on me the other day that we don't need all four stockings this year...therefore, we may just not do stockings.  So, here's to the holidays, may they go easy on us. 


Here are a few pictures from my favorite Halloween... it was the last year I got to choose there outfits and coordinate them. The following year, I lost out to Spiderman and a Bat-a-rina.  They were adorable... 


My sweetheart,

It's not getting any easier here on earth.  Keep watching over us, we need you. We love you to the moon and back and back again... always. 

Love,

Mommy