Isaac’s Story: A Nest Filled with Love

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  

By Sarah Steiner

I held his hand as he died.  Just as his time in the womb was just between me and him, so was his time of death.  After he took his last breath I told him over and over and over again that I was so sorry that all of the love the world sent his way wasn’t enough to save him.  And now, eighteen months later, I’m still so very sorry.

Isaac was the second of three boys.  The first five years of his life were filled with all of the normal things that make up early childhood. Learning to get along with siblings, playing with friends, developing his own special interests (Dinosaurs and Legos), the routines of preschool and church and extended family.   Isaac loved to help his Dad with yardwork and he loved to help me in the garden.  Isaac loved to travel to the ocean, the mountains and anywhere we took our pop-up camper.  He was a bright,  attentive, inquisitive and beautiful little boy with a world of possibilities in front of him.

And then a malignant brain tumor got in the way.  On June 6, 2011 Isaac was diagnosed with Medulloblastoma.  A “friendly” kind of pediatric brain cancer with a 90% five-year cure rate.  We held on to that statistic while our precious child endured brain surgery and proton radiation and a year of chemotherapy.  During this time Isaac turned to Legos as his form of therapy, went to kindergarten as much as he could and rarely complained.

I was exhausted as I shuffled him to doctors appointments and tried to maintain any kind of normalcy for my other children.  But in September, 2012, when his scans were all clean and his treatment was completed and he was declared cancer free, everything we had done to save his life was so very worth it.

Isaac and Mom
Isaac and Mom

We celebrated.

We had saved the Make a Wish trip that Isaac had been given for after treatment.  In October, 2012 we went to Orlando.  We had never been there before and took it all in – Give Kids the World, Universal Studios and, of course, Disney World.  Isaac’s big brother fought Darth Vadar, our boys made lightsabers, they got Harry Potter wands and we crammed as many magical moments into that week as we could.

We returned home from our trip and got back to “normal” life.  This meant school for Isaac and his older brother and time at home with mom for his younger brother.  It meant that work resumed as usual for Dad and this included frequent travel.  We were busy and we were grateful.

Eight days after we arrived home from our Make a Wish trip Isaac began to complain of pain in his spine.  He had difficulty walking and frantic phone calls were made to his doctors.  The morning that he had a scan scheduled he woke up and couldn’t move his legs.  Before we even got in the car that day, I knew.  I knew the cancer was back.  I knew it was everywhere.  And I knew it was going to take him.

As the doctor showed me the images of the cancer throughout his body, I looked and her and said, “No.  More.  Pictures.”  I had seen enough. All I wanted to do was get my child home and love him.  He had endured enough.

So that’s what we did.  We made a nest filled with love for our six year old and tried our very best to allow him to die with dignity surrounded by all of the people and things he loved most during the last months of his life.  This meant there were lots and lots of movies (Star Wars, Lord of the Rings, Harry Potter), lots and lots of Legos, a brand new puppy and one last birthday party, when Isaac turned seven.

On March 6, 2013, Isaac squeezed my hand two times and was gone.  He told me once, “My love will never stop flowing.”  And my love for him will never stop flowing either.

Isaac.
Isaac.

I still picture Isaac as the bright, attentive, inquisitive and beautiful boy that he was.  He was so much more than cancer and remains so much more than a statistic.

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