Perseverance & Unwavering Faith ~ Part 1 with guest blogger, Amy

I find that that when people hear I have cancer, more often then not, they too have a personal vendetta with the disease. In Amy's case, it was her oldest son. She was kind enough to reach out to me with support in the beginning of my journey. After hearing the story about her son Zach, I had to have her as a guest blogger! It's a beautiful story of perseverance and unwavering faith.  

Meet my high school buddy and guest blogger, Amy! 

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BIO: Three weeks prior to starting his kindergarten year, Zachary was diagnosed with Acute Lymphblastic Leukemia (ALL).  His treatment protocol included  10 days of cranial radiation, and 3 YEARS of chemotherapy.  Zach is now 22 years old and a 17 year cancer survivor!  Here’s his story, told by his mom, Amy. 

Amy and her husband, Tom

Part 1

August 19, 1996 was the day that changed our lives forever.  This was the day my husband, Tom, started a new job, and we all were so excited.  You see, this job was the one that made it possible for me to quit my job to stay home with our three young children, Zachary (5), Cody (2 ½) and Hannah (10 months).   The plan was for him to spend his first week in Boston training and meeting customers (we live in a Minneapolis suburb).  

Zach, Cody and Hannah three months prior to Zach's cancer diagnosis (May 1996)

August 19, 1996 was also the day I had scheduled to take Zachary in to see the doctor.  Something wasn’t right and I wanted him seen.  He was incredibly tired and cranky.  He also looked very pale standing next to Cody, his summer suntanned little brother.  Plus, he had these pesky little bruises on his legs that I couldn’t figure out ( I later learned these are called petechiae - a result of a low platelet count).

4:00 appointment.  4:30 blood draw.  5:00 cancer diagnosis, and by 6:00 we were already a “Childrens’ Family”, meaning we were admitted to Minneapolis Children’s Hospital.  Tom was paged at a Red Sox game at Fenway Park to receive the phone call from his brother that Zach had leukemia and we were on our way to the hospital.

That first night in the hospital was a nightmare.  First, I had to keep a brave face for Zach and be calm and reassuring, while he was getting poked and prodded and not understanding why.  I’ll never forget having to lay on top of him to help hold him down while he had an iv placed in his arm.  “No Mom No!”  I’ll never forget those words...

Next, I wasn’t sure if we had medical coverage or not.  Tom was on his first day of a new job and wasn’t eligible for medical insurance for 90 days.  I wasn’t aware of it at the time, but God had us in His hands the whole time, making sure the COBRA paperwork I had requested was delivered to our house via certified letter at 2 pm that day.  Because I had requested it and signed for it prior to Zach’s diagnosis, we WERE eligible for coverage.  

Lastly, it was a long, lonely night sitting in the hospital watching my beautiful boy sleep all the while knowing that Tom was alone in his hotel room in Boston, dealing with his grief alone because he was not able to catch a flight home until the morning.  

Zach spent ten days in the hospital, getting his port installed and starting his chemotherapy regime.  The plan was for one year of intense chemotherapy, 10 days of cranial radiation, and then 2 ½ years of maintenance chemo.  Barring any major holdups, he would be done with treatment in December 1999.  

Zach Christmas 1996

I remember wondering how were we ever going to get through three years of this?  Seriously? Will he survive this?  Will we all survive this? I have three small kids and a husband who works a million hours a week, how am I going to do this on my own?  Will our lives ever be normal again?  It was the most desperate feeling I’ve ever experienced.  

A moment I’ll never forget during those first ten days in the hospital…  I was driving from our home down to Children’s Hospital in my little white minivan - aka the mommobile.  Tom and I took turns staying overnight with Zach.  One of us would stay with him and the other one would go home to be with Cody and Hannah.  My time driving back and forth from the hospital was when I would cry.  It was the only time I was alone.  At the hospital, I had to have a brave face on for Zach, and at home, others were always there watching Cody and Hannah.  I remember exactly where I was on 94, heading east, just before the first tunnel.  The range of emotions a person can feel in a matter of seconds is amazing.  I remember first being incredibly angry at a man who passed me in a fancy little red BMW, thinking to myself that he was so self-centered in his sweet little car, when my son was in the hospital with a potentially fatal disease.  How dare he!  I was so angry, I broke down crying, and screaming in the car.  I remember shouting at God, “Oh God, help me, help us!  Will he be okay?  Will he survive this?  Will I see him grown up?”  I sobbed, you know those big sobs when your shoulders even shake.  Suddenly, I experienced this warmth throughout my body, and a calm came over me.  As clear as day, I heard a deep voice say, “He will be alright, he’ll get through this.  You’ll see him graduate from high school and he’ll grow up to be somebody very special.”  The voice was so clear, I turned around in my van to see if someone was sitting in the back seat.   I knew deep in my heart we’d all be ok.  God spoke to me, and I was awestruck.  This turned out to be the first of several times this happened throughout the course of Zach’s treatment.  We felt God’s arms wrapped around us and it kept us all going.  I hung onto Matthew 6: 25-34.  Take a minute and read it when you can.  I knew that God took care of the birds of the air and the flowers of the field, he would surely take care of us. And He did.  God is good -- all the time.

Zach plugged away through treatment.  He gained 13 pounds in two weeks while on prednisone.  This weight fell off quickly during the next phase - too quickly and by Christmas time he looked like Gandhi.  He endured 10 days of cranial radiation.  Such a scary experience for a five year old to have a plastic mesh mask put over his head, and then the mask bolted to the table so he didn’t move at all during radiation.  He was a champ and never complained.  He dealt with needle pokes, numerous lumbar punctures, low blood counts, nausea, hospitalizations, a dandy case of shingles, and a major seizure - a lovely side effect of chemo.  

We were led and supported through this ordeal by the FABULOUS docs and nurses of the Hematology/Oncology Clinic at Mpls Children’s Hospital.  We’re so thankful we had this team taking care of our Zach. They were truly part of our inner circle, providing wonderful care and support. 

I remember throughout the course of his treatment, friends and family would comment that I was so strong, or would ask me how I stayed strong.  This comment always caught me off guard, and in fact it used to kind of irritate me.  Did I have a choice?  Well, I guess I did.  I could step up and handle this, or wither up and die.   My son was 100% depending on me to get him through this and I was not going to let him down!  So, thanks for the kind words, but everyone who is a parent would do EXACTLY the same thing I did, and that’s whatever it takes to get your kid through to another day.

I could go on writing and explaining every detail of his treatment, but wow, it’s so emotional going through this all again.  In one breath it seems like a lifetime ago, and in another it seems like only yesterday.   I’m so thankful to be where we are today, and to have my beautiful, generous, kind hearted,  22 year old Zachary!

Zach's grad photo (2010)

Below are the lyrics to a song by Mark Schultz.  It brings tears to my eyes every time I hear it.  It takes me right back to those first days in the hospital with Zach.  Mark explains it better than I can.  Give it a listen, click on the video or link below. 

He's My Son ~ song by Mark Shultz

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
CHORUS
Can You hear me?
Can You see him?
Please don't leave him
He's my son