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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

So much love = so much pain

Two weeks ago, on Sunday, we returned to our church for the first time since Sam's service.  We hadn't been avoiding it, we had simply gotten out of town for a few days after the ceremony.  We certainly were not under any illusions that this would be easy, we knew it would be hard but we knew we needed to be there.  As usual, our church family was perfect... just the right amount of love and hugs, but not so much that we felt bombarded.  I know, without a doubt, every single person there would have gladly offered up yet another hug and condolences but we were given the space to breath and cry... we love our church. 


I had feared seeing the sanctuary without his beautiful red "bed" down by the pulpit would send me into a spiral, but it didn't. I had feared that the church we so dearly love would become a place of terrible sorrow for us with memories of pain and the tribute to our beautiful baby boy. (Yes, he will always be my baby boy even though I can hear him correcting me and saying "Grrrr.... I'm 6 years old mommy... you know that don't you... you know I'm a big boy")  I was relieved when we stepped in and I did not crumble (immediately anyway) and we walked to our normal pew where my parents were already waiting.  We sat down and then it started... the music... "Come, Now Is The Time To Worship."  This song is sung thousands of times across the country as believers gather to praise but for me it was a "trigger."  For many who sit behind us at least (Mr. and Mrs. Atterbury for sure) will understand why.  You see, Sam was always an active boy, one who was not interested in anything that wasn't "interesting to him" and grown up church was no different.  Every Sunday for as long as I can remember Sam would want me to pick him up during the opening worship song and he would sing with me.  He would sing the whole song.  Many time with his feet swaying around kicking me and the pew in front of me and with his head buried in my neck and shoulder.  Over the past several months I  started to cherish this time, even before he was sick.  I knew it wouldn't be long before I wouldn't be able to hold him and have him cling to me much longer... although I had no idea it would be so permanent.  This was a weekly ritual almost for he and I, then I would walk he and Ava down to the front for Children's Time and I would cross my fingers they would let the leader speak without interrupting and most of the time Sam's hand would be the first in the air with answers to any and every question posed to the group... I would sit and hold my breath... "Oh boy, what's he going to say" I'd think.  Now, I have yet to be able to walk Ava down front for Children's time.  So many times in the last few weeks I have had others comment about the first few weeks when we attended FCC (around Easter in 2012, Sam and Ava were 3 1/2)  and how during Children's Time when they would begin to bow and pray Sam would shoot his hand in the air (this kid was like lightening) and say "I have a prayer! I have a prayer!" It was a simple prayer they always said at St. Peter's Daycare before meals: "I bow my head and softly say..Thank You for the food today... Amen"   It's such a seemingly small memory, but to me it represents thousands like it... I am grateful others remember moments like this too. It helps.

During the service two weeks ago our Pastor, Ed, who never misses a mark and always speaks into the deepest part of me, even when he has no idea he is, spoke his final message in a short series that was planned prior to Sam's passing... on Deuteronomy... on transitions in our lives.  While he also spoke of marriage, job changes, growing up etc.. he also spoke of loss, tragedy and the transitions we must face.  Largely and suiting to our congregation at the time there was a focus on how to grieve. Or maybe that's just what I was focused on, either way... it was a hard message to hear, although beautifully appropriately spoken.  He spoke about the need to get it out, the grief, the pain, the anger ... the questions, the memories, the good along with the bad and slowly healing with start.  "Healing" could be a whole additional post, but I will just say for now I am sure "healing" will likely never happen... only a learned ability to manage to grief.  He talked about ways of getting it out and when he said "journaling" I looked away once again... wiping the tears, trying to breath.  It is no secret that journaling helps me.  It is the one way, I feel like I can get some of it out.  In the past, I would be an emotional mess for a full day after writing but this time I'm hoping to have an opposite reaction... here's to hoping. 

So, here I am... to worship, to bow down, to say that You are My God... but that I am hurt, I am in pain and why I do walk through this dark valley I know you are with me, yet I am fearful... I fear letting go of the pain, just as much as the pain itself.  The pain helps me keep Sam close... although for Ava, for Matt and for myself I know I need to manage this better. 

This Sunday, the 19th, will mark one month since Sam passed.  My pain and Matt's pain pale in comparison to what Ava deals with.  We have followed the guidelines in how to handle this yet I'm not sure anything will truly help.  Throughout the last year, I have commented on Ava countless times; she has been a rock for all of us even when we didn't even realize we needed one.  The bond she and Sam have is beyond any understanding I will ever have.  Not only were they twins, they were and are best friends.  Ava has lost both her brother and best friend.  I have felt like we have been honest with Sam and Ava all along about treatments and cancer... then after Sam passed she asked why we hadn't ever told her that cancer can kill people.  I was left blurry and taken aback... here I thought we had been protecting their innocence and trying not to add to their fear yet from her eyes I hadn't been truthful.  It hurts.  It hurts so much, because she is right. 

Now, I am not saying I think we should have told them this all along, but I do wish it wouldn't have had to come at a time when Sam was so sick already.  Ava has confessed a great deal to us over the past few weeks.  While I think it is good and helpful for her to talk about it, it breaks me down every time to hear what she has to say.  It isn't all about Sam.  Some is about her anger and hurt toward me.  She has several times now said in a serious, non-dramatic, tone that she feels like we love Sam more than her.  While it pains me, I understand how she could feel this way.  We have tried over and over again to reassure her of our devotion to her as well over the last year but the fact was that Sam was sick and needed me there too.  We spent so much time away from home, starting last January when we went to  Jacksonville, FL for proton treatment and were away for a month.  She came with Matt and my Dad for a visit mid month and she had no idea the tears I shed wanting to keep her with us for the remaining of the month.  But we decided it was best for her to stay at school and Sam was getting weaker each day of proton and his schedule wouldn't have been conducive to keep her occupied too.  We would do everything we could to try and spend special time with her... Matt called it the divorced parent syndrome was now in effect for us cancer parents.  We always wanted to maximize our time together, and so did everyone else. It's one more of the additional impossible situations of pediatric cancer... siblings who love, care and fear... too.  Fast forward to Sam's first relapse, we were told then it was a grim situation... time to call the family in so to speak... Sam was in terrible pain and we were in the hospital weeks a time.  When we got the dreaded news, we saw how much better we all functioned when Ava was with us.  I was able to take her for dinner alone, she took walks in the park with Matt, she stayed with Aunt Judi and most of all she was Sam's "Best Medicine." Sam would perk up so much every day she was there and when she wasn't he was always wanting to know "when's my Ava going to get here?" " I wish Ava was here." She was his best friend too.  He loved her every bit as much as she does him. Ava was healing for Sam, he was always better with her by his side. 

I believe the hardest part of his transplant was not being able to see her for so many weeks.  I took a few nights - one here and there - away from the hospital once actual transplant had been completed and spent some time with her, but it was always such a logistics equation to get her to the right place at the right time in order to maximize time.  We were and are so blessed to have so many people who love us and were eager to help.  We only let her go where we knew she would be cared for and loved at the same level as with us... she, on paper, had a great summer.  She spent weeks with Aunt Tracey in country then to Uncle Jeremy in KC and to Nanny's in KS with breaks at home between each.  She went to two different VBS's and learned to play hockey with cousins then did dance camps with Nanny... she had fun, truly she did, but she missed Sam and us.  From her eyes, we were choosing to be with him versus her.  The video of Sam running to her when he busted out of BMT was so precious... he didn't care about that banner or tearing it, he was going for his Ava. 

From that point on, we were back on the rollercoaster.  Soon, our full attention was back on Sam's care and while we tried to still focus on her schoolwork etc... it just wasn't possible for us to be in two places at once.  I would talk to her on the phone or facetime but I would loose it as soon as I got off the phone.  We missed her so much every time we were gone.   The fact is, this stupid cancer spreads it's side effects all over the rest of us too. 

Since Sam's passing, she has shown us over and over again how strong she is... she amazed us when she asked to speak at Sam's funeral.  Then for her to handle herself and speak as she did was pure organic strength... I could not give her that, we could not... that was all "My Ava."

Ava has had a few play-dates and even a sleepover in the last few weeks, in hope of building stronger friendships for her and keeping her occupied and excited.  Each have come with a let down where she feels like she's cheated on Sam somehow by having fun with someone else.  Even saying to me once after dropping her friend off that "the fun never ended with Sam." She was right... she always had a playmate, she wasn't/isn't used to being alone.  After all isn't that one of the advantages to having twins; a constant playmate... a forever playmate... a built in best friend??? Her heart ache for her brother makes mine break off a little more every time, then for her to feel we haven't loved her as much as him just demolishes it.   She told us this in honesty, in a sorrowful place not in a dramatic attention seeking way.  This is how she felt or may still feel.  I pray I can prove to her that her suspicions, while understandable, are not, nor will ever be true....

Last weekend, Ava began to hyperventilate and had a very broken heart... one I couldn't fix.  She begged not to go to church on Sunday morning, begging for a family day.  Matt has gone back to work a few days before, this was one of those times we needed to listen... just listen... she was trying to tell us so much more.   We took the family day and had a good time.  Over the last year; I have devoted everything that I am and all that we have to Sam's battle, and now it's Ava's turn.  Unfortunately, her battle will last a lifetime, although like the rest of us, she will learn to manage it.  Because of this I have chosen to resign temporarily from my career to care for our family... again.  Ava, first and foremost but the rest of us too. 

My company, ALDI, Inc. has supported me for the last year.  I have been able to remain on insurance for that time with minimal work from me.  I had been allowed to use my company car throughout the trips back and forth to St. Louis and have been shown unconditional support from my coworkers, team members and leaders. I knew when I took the initial leave of absence that I had a year.  That year came and went with destructive force and left me a different person.  I need to heal... I need to be there for my family to heal... or at best manage while supported and wrapped in the love and support we need right now.  Therefore, I resigned.  This was yet another "side-effect" of stupid cancer... I have a had this career for over 12 years, I have developed bonds that will last a lifetime and for that and everyone in the OFA office and beyond I am grateful.  I have the option to return when the time is right and for that I am also grateful, Thank You. 

I will use the time while Ava is in school to focus on my promises to Sam.  To always 'let his light shine.'  I am working on the necessary IRS requirements for his foundation and am already working on his projects.  His 100 Day's of Comfort has proven to be an amazing way for me to physically see the love for him while giving his love to "all the kids."  I am excited to see the finished products... Sam was amazing.  These packs will be something we keep doing in his memory with the foundation.  Thank you for the hundreds of donations, I take a lot of relief and even some excitement in getting to do this for him and it's all because of so many of you who have taken the time and effort to support the wish of a six year old boy.  Thank you!

I know I have spoken a great deal about our Pastor in these blogs, the fact is that he has also been a strong, loving, smart support as well from the first few days he has been with us. I take great comfort in listening to him Sunday's (or any time really, he's brilliant) It occurred to me that I have never shared what has helped me so many times before.  Here is Pastor Ed's sermon blog spot... just typing Pastor Ed makes me think of how sweet Sam would say his name... he loved him too.  http://edvarnumsermons.blogspot.com/


To my Sam,

I love you to the moon and back and back again... I miss you every second of every minute of every day.  It hurts here on earth, but it's a pain I can handle to know you are free from the pain. I feel you with me so often, in the breeze (Ava was hugging you back in the breeze the other day) in the monarch butterfly that keeps fluttering around my car door, to the beautiful sunsets (Ava says God must be proud of you for getting so good at making them) and for your finger paintings in the sky... oh sweetheart, I love you...


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Comments

7 Comments

alisha bonetti
By Alisha Bonetti RMHC Jacksonville
Cassie I knew from the time I spent with you in Jacksonville that you (and Sam) had amazing faith and strength. Praying for the family.
Jennie Rees
By Jennie Rees
Dear Cassie, I was hoping to read another post. I'm glad you shared. Not so I can feel your pain even though I can't help but to feel it, but because I knew your strength and inspiration would shine through once again. I'm not sure why, but something drives me to write here. Although I've never carried the same struggle on my shoulders and I cannot possibly feel your ultimate grief, I do believe that like Jesus died on the cross for our sins, those that also grieve for others quite possibly help take a small tiny itty bitty piece of your pain too. I know you may feel hurt forever but your strong support group will continue to help you manage. As far as Ava is concerned, although it is important to put yourself in the mind of a 6-yr-old and understand her pain, keep in mind that in time and with age she will understand and see every bit of your effort and your love for your family and her especially. I'm not a perfect person, like everyone I've made mistakes in my life and have had to ask for forgiveness. Sometimes I read your posts and think "Wow", if only a number of us had the blessing of growing up with such a mature insightful loving mother. Ava is so blessed to have you. I have no doubt your support will guide her properly. While the good memories of Sam might make your pain stronger now, they will also help in your healing and someday they will make you smile, you'll know he's given you a strength that you may not feel right now. Just keep doing what your doing. Focus on Ava and your family. Take it one day at a time. Keep up your awesome ability to see things from her angle and yours, do your best to keep it balanced. It's all you can do. Above all, keep the realization that you as parents have to grieve in your own way as well, that may be away from Ava for now until she understands everything. Finally, keep that strong faith in God. I do not belong to a church, but I can tell you I do believe he carries the weak, he builds perseverance and he leads those that are lost. He'll take care of you too as well as your family and Sam will be right there ensuring he doesn't forget. Take care of yourself and ensure you follow your intuition stated above. Utilize your goals to help you carry on. One more "virtual" hug, take care of yourself and your family.
Bev Adams
By Bev Adams
I don't know you and your family and yet the tragedy of losing Sam has made such an impact on me. I find it so terribly wrong for any child to be sick and then to have to lose that child to such an evil disease such as cancer is even worse. I have to believe that God is still in control and that those loved ones go directly to Him to be cared for. You have been on my heart so so very long and many, many days this past month as well. You are strong, so much stronger than you know and having such a sweet child as Ava will keep you going. I hurt for her. I know the pain of feeling unloved. We know it is not true but it scars us. However I also know that God will step in there as well to protect her heart. Know that you are loved and prayed for by so many people. You are loved in ways you can't imagine. Keep writing. And wrap your arms around that little girl and tell her of the many people she doesn't know that love her as well. :)
Kendra Windsor
By Kendra Windsor
Thank you for your loving words! May God keep you strong and full of the peace only He can give. As I teach first graders each day I often think about my job being to love them like Jesus does. Sam is a great reminder of that for me. And sweet Ava may she keep on keeping on for Jesus and grow in His grace and goodness. God has big plans for her :) my love and hugs to each of you!
Carol Markway
By Carol Markway
Thank you for sharing from your heart. God will carry you through every step of the way and will give you what you need everyday for strength and comfort. God bless your sweet family.
Much love and may hugs!!
Suzanne Michaelree
By Suzanne Michaelree
We are still here. We are still praying with and for you. Your family has left an indelible mark on our hearts. Thank you for your words.
Paula Wuelling
By Paula wuelling
Cassie..gonna miss you but., you take care of you and your family..Please just know you are all in my thoughts and prayers everyday!!!