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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

"I don't understand..."

"I don't understand Mommy....What didn't you do? What do other parents do to save their kids that you didn't do?  You said you did everything but Sam died anyway."  

Every single day I say "I don't understand."  I am prepared for that... what I was not prepared for last weekend was Ava asking me why I didn't do more to save Sam.  How do you prepare yourself for that? I honestly don't know.  I question myself every morning and every night: what if there was something that we could have gone back and done? I have grown to prepare myself for that self doubt. 

I recently saw a new article about a promising pediatric drug for Ewings Sarcoma patients which could easily turn into an option for some rhabdomyosarcoma patients and all I could think of if we could have just kept him another year... maybe we could find a cure.... I am prepared for that: I pray for that. 

I was not prepared for Ava's doubts too though.  Of course, she is entitled to those thoughts and questions... why wouldn't she be?  She was respectful, kind and caring while asking which I admire about her, but it stung. To hear her verbalize her thoughts... it's a lot to take in.  Ava has a lot of "I don't understands" and I know I certainly do too. 

I don't understand why I couldn't save Sam too.
I don't understand why some kids live and other kids don't. 
I don't understand why Ava turned seven: while Sam is forever six.
I don't understand why I only need three dinner plates now, but I pick up four ...everytime.  

To be very honest, I'm proud that she was able to open up and talk in such a grown up way.  

I DO understand her pain.
I do understand how she has questions.  She didn't (couldn't) fully understand what was happening and now she's trying to make sense of it all. 
I do understand how she has her hardest times after she has a good time.  
I do understand that her form of grief doesn't have to match mine... she lost half of her heart and soul like I have, but it's different.  Her twin... I can't even imagine, yet here I sit unable once again, unable to take my childs pain go away. She has worked so hard to work through so much the past several months, but this past month has been the hardest yet....their birthday, summer break, all the fun we would nornally be having: laying outside watching the stars, swimming, reading, baking, fireworks... it's all hard. 

I don't write this for sympathy.  For those of you who do read this, please just remember that you never know the battle someone walked before they left their house or even opened their eyes that day.  I never expected to be stopped as we put our shoes on in the morning on the way out the door.  We sat for over an hour at the top of stairs and talked through it.  I am so proud of her and love her so very much. 

Dear God, 

Please please please help all the kids, most of all Ava.  Please give Sam a kiss for me and tuck him into bed tight, just the way he likes it. 

Amen









 





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Comments

6 Comments

Terrie Jordan
By Terrie Jordan
Amen. Love & Hugs!
Cindy Alieksaites
By Cindy Alieksaites
I can't imagine what you all are going through, it breaks my heart for you. Thank you for sharing, keeping you all in my prayers.
Manya Stone
By Manya Stone
Thank you for sharing your heart. Keeping all of you in my prayers, Love, Manya
Dianna Brown
By Dianna B
Ouch. Completely understandable question from Ava, but I know it must have hurt and I don't know how you answer it. Nobody can understand God's plan. Right when you think you do, something happens and you realize you don't. YOU are amazing, keep on keepin' on. Love and prayers to you always.
Linda Resinger
By Linda Resinger — last edited
Thinking of you and lifting all of you in prayer. Blessings.....

Love, hugs and ladybugs.....
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Lorna Reese
By LORNA
Hugs and prayers for you all. Your post made me think of an old hymn. "By and by when the morning comes. When the saints of God are gathered home. We will tell the story of how we overcome. We will understand it better by and by." Praise God for the assurance we will all be reunited one glorious day!
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2 people hearted this