My truth about September: it hits like a ton of bricks…

Journal entry by Cassie Santhuff

As a part of Sam’s foundation, SSF, we are asking that several of our volunteers and supporters do a short video clip of why they chose to support SSF or what September means to them…

I have tried to do this very task that I asked of my friends and family… but I can’t seem to get it out without turning into a splotchy tear stained mess…honestly, I am just not strong enough to say it… but I can write it.  So here is the truth…

To me, September brings nothing but heartache, pain, fear and devastation.  Not the hopeful, positive, uplifting Cassie, huh???  No, while I want to be that person… September is just almost too much for my mind and heart to bear.  The pain to three fold.

First, this is the month Sam had his first surgery… yes the 12 1/2 hour re-section surgery where at the end we were told… we can’t go any further… we can’t get clear margins… we are at his brain stem…. What??? this surgery was suppose to just get the little bitty tumor the size of a pea out of his nostril… brain steam???? What???   Sam had most of nostril removed completely along with a half-dollar size portion of his cheek and hollowed all the way back to his brain stem… as a parent, to know this is happening with hourly updates from the waiting room – not being able to hold his hand… knowing I sent him back there saying it will all be ok…. we just have to do this to kick the cancer out of you…. it’s debilitating.

Second – fast forward to September 2014…. Sam had just missed the start of 1st grade, but he was home! He was waiting out his 100 days of isolation before our lives can start again!!! In the past year he had beaten ALL the odds that were stacked against him… We had been told the previous March that… nothing would work, relapse of this kind has never – not once – been beaten… but we could try if we wanted… WHAT???? If we wanted???  THIS was not over!!!  Sam fought the battle of a lifetime… and won.  He had a great summer with his Make-A-Wish pool, traveled to see family… he won….

Then, early September 2014, Ava had just started school, Sam’s tutoring was set up, the Super Sam Comfort Pack drive was under way and had already collected enough items to fill the 100 packs we had hoped for…. our lives were about to return to us… we were full of hope, determination, pride and humility… we are grateful God has spared our child.

Then at breakfast one day shortly into the first week of September, Sam said it… “My arm hurts… ” Matt and I looked at each other and in that moment we knew… Long bone pain is the result of disease in the the marrow… we had heard this type of pain before… we knew…
We got Sam in for more scans asap and it was too early to see anything on the scans insurance approved… they were all clear… I remember Matt collapsing in joy… To me, it didn’t make sense… what was it?  He needed constant morphine at this point to control it.

Upon further fight with insurance we got a PET Scan… it was everywhere again… completely throughout his bone marrow… finger tips to toes… There were no more options this time.
We thought we would have months left… but the cancer was so bad… it was everywhere… in just two more weeks we were forced to say our final goodbyes…

Ava, without knowing it, gave Sam the perfect hug as she left the hospital that night to stay at Aunt Judi’s with our family. She draped herself over him, hugging him with her head reseting on his chest and in her red dress that was his favorite… She told him how strong he was… how much she loved him… how proud she was of him…that she would pray for him and see him tomorrow….

That tomorrow never came for Sam and Ava as we knew them… Ava woke up the next day to parents broken beyond measure… explaining that Sam was now in Heaven… I will never forget how mad she became that we didn’t let her be there… In this moment… I was numb (a blessing of a trait our Heavenly father gave us to handle such awful situations) and I remember thinking, I have lost my son and my daughter doesn’t trust us anymore… to be honest, this is still an issue that comes up regularly… she feels robbed… and I still don’t know if we made the right call.

What I do know is I still wake up in tears… I wake up saying/sobbing “I promise,  I love you, I promise.”  I don’t want Ava suffering PTSD the way I do… but maybe she did need to be there… I don’t know… 

That night, at 4:20 am, we knew it was close… we called my dad, my brother and Matts siblings and told them to come… Sam was surrounded with Matt laying on one side, me on the other… my parents and brother filling in the circle around him as he let go… As he exhaled for the last time, I got in one more “l love you…”

Sam was gone, then the reality… the final bath… the leaving the hospital without him.. the car that was now too big… a forth seat sat empty…

Funeral arrangements and the task of writing my six year old son’s eulogy were next on our plates… Ava was involved (insisted in fact) in every bit of it… a decision we later caught criticism for!  She picked out the most perfect bright cardinal red “bed” for Sam… (I’m still amazed that this was an option)… we then picked out his final resting place and it couldn’t be more perfect… by a pond, under a willow tree.  Everything about making the arrangements went smoothly and for that we are grateful.

That afternoon, only hours after losing Sam, we sat on our deck with our pastor and planned the service program… on a branch extended out of the tree line at eye level was a bright red cardinal.
This cardinal perched on that limb the entire hour +/- that we talked…. Sam was with us.

Somehow over the next few days we managed to exist.
Then the funeral, Sept. 24th, 2014.  It was perfect.  What felt like the entire town came out to pay respects… supporters lined the streets of Fulton and let balloons go as our hero passed them on his way to his final resting place… We released 400 balloons on that peaceful serene day.
The day after the funeral Matt, Ava and I escaped to grieve privately for what was essentially the last bit of September.

Third and final: September used to be the start to my favorite time of year: fall.  Beginning a new school year, fall weather just around the corner, it was always full of excitement and fun… I miss that. I miss all of it…

This September: Make a difference, don’t forget… know that 7 new families are experiencing my pain every day in the US.  While I am broken: I am still fighting.

This is what September means to me… it is Childhood Cancer Awareness Month for the world… it is full of heartache for my family but we are doing our best to turn the pain into impact.  

Last year, as we were faced with the first September without Sam – his first “angelversary” – we were determined not to let our grief get the best of us – after all, that is NOT what Sam would have wanted.  So we headed to DC as the SUPER SAM FOUNDATION.  We were there on his first angel-day doing our best to fulfill our promise to him: to continue the fight for ‘All the kids.’

This year, we will be in Portland, OR to officially unveil the Super Sam Research Grant that Sam’s foundation, funded in memory of Sam and for “All the Kids.”  We know, this would make Sam smile… At times, I almost feel the gentle hug around my neck and hear him whisper… “I love you momma…”

I WILL never give up the fight against childhood cancer.
I KNOW Sam was worth more than a measly 4% of federal funding.
I NEED to do everything I can to fight for the next mom, to stay whole.
I WILL NOT let Sam’s life and fight be for nothing.
I WILL NOT let another family feel alone in this fight if I can help it.
I WILL always be broken but fighting.

Join the fight… join us www.SuperSamFoundation.org