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

Be still and know...

Be still and know.... I AM in this place. 

I close my eyes every night and I wake every morning, still in disbelief.  How did we get here, how is this possible?  I do have a son... no he isn't here, he isn't in the building, his room is still clean; not played in, not slept in.  I wake up at 3 am then again 4:30 an everyday I relive my nightmare.   I have gotten to a point where I look at Sam's photo next to my bed and say "I love you" then go back to sleep for another hour.  Some days I don't, that happened this week a few times and I am so glad I did. I used the time to "take care of Sam" or how I look at doing Foundation work, and while I was at the computer I heard the chirping of the cardinal... I looked out the window and it was still so dark (yes there is a metaphor here) but I heard the chirping and had to see.  When I turned the light on, there he was, without budging the cardinal was there watching me.  I knew Sam was sending me a little sign... "it's okay momma, I'm okay...Thank you for keeping your promise."  

Regardless of how any of us believe about signs, it was what I needed.  The last several days seem to be enveloping me.  Halloween was hard: watching the holidays officially start is hard. Watching Ava grow more amazing everyday and listening to her songs she writes for Sam shows us just how broken her heart is. BUT then she will belt out every word of "Fight Song"  She will sing with all her might "THIS IS MY FIGHT SONG. TAKE BACK MY LIFE SOOONG.  PROVE I'M ALRIGHT SOOONNGG." It gives me chills.  She means it and I am taken back two years to hearing Sam belt out "I AM A CHAMPION AND YOU'RE GONNA HEAR ME ROOAAARRR!" He was so powerful singing that song and we did hear him roar.  I am so proud of Ava, she has adopted this song as her own.  I haven't ever heard her sing with this force.  She is telling us who she is: we just have to listen.  

While I have always said this page is my reserved place in world, where I can get out my inner feelings and that I would never turn it into an advertisement for our foundation, but today... these are my feelings.... this is the only way I know to deal with my loss, my pain, my fear... to fight for all the kids. I am so proud to say that we are on pace to fund our first research grant next year (this is because of so many amazing people we hav to thank) ....this is no small accomplisment and has taken a small army to build.  When I allow myself to think about it, I picture Sam sitting with Mason (our lab of 13 years we lost to cancer during Sam's fight) [or as Ava said yesterday... Sam reading a book with Mason laying on his feet... (That's a picture, I never got to see Sam really read...)] watching us and puffing out his little chest and smiling, saying.. "that's my family... I love my family." 

Be still and know... is a re-occurring mantra in my mind lately...I will do my best to listen...and know Sam and God are in this place.  

As always, please listen to your family, don't take anything for granted... enjoy the giggles, watch them read and play... soak it all in and make it count. 

21 people hearted this



Sally Bickhaus
By Jim Bickhaus
Many nights I feel the same way. Good nights and bad nights.
Heather Vodnansky
"Be Still and Know" is a song that keeps running through my head, constantly. I tear up every time I read a post from you. Keep writing Cassie. You have an amazing gift.
1 person hearted this
Manya Stone
By Manya Stone
Thank you for sharing your heart. Love, Manya
1 person hearted this
Sharon westerfield
By Sharon W.
Well said. Thank you for continuing to share your true heart.
From your balcony,
1 person hearted this
Emma Tacon
By Emma Tacon
Thank you. Our children are so precious & yet it is so easy to adjust our proirities in our busy lives.
1 person hearted this