September, 2001 | Jan Harley

I was now seated back in Nicole’s room and searching within myself for answers to questions I wasn’t even sure what to ask.  As I looked up from my quiet contemplation, a nurse was wheeling in Nicole on a surgical gurney.  My heart leaped with joy to see her finally.  “Hi Sweetheart”, I lovingly gestured.  “Hi Mom, when did you get here?”, Nicole asked.  “Oh, just a while ago. How are you feeling?”  “Pretty groggy Mom.  They put a cast on my leg. See?”, replied Nicole with a look of uncertainty.  As she showed me the cast on her left leg, I nodded with approval and kept the smile on my face I now had permanently sewn on.  Inside, I was still crying the cries of every family member that has ever heard this kind of news about a loved one or experienced the pain of having a critically ill child.  On the outside, however, I appeared to be calm and confident for Nicole.  With all my strength I whispered to Nicole, “Don’t you worry my sweet girl, everything is going to be all right.  God is watching over you and keeping you safe”.  “Ok Mom”, she whispered back with a faint smile on her face.

Soon the team of surgeons and oncology staff were arriving in our hospital room to consult with us.  I found myself throughout the next few days in a new and foreign territory.  This must be what the Native American Indians felt when they were uprooted from their peaceful existence and forced to live on reservations they knew nothing about.  The foreignness of the medical terms, prognosis and survival rates inundated my world.  The terms metastasize, bone density, osteogenic sarcoma, growth plates, methotrexate, adriamycin, leucovorin rescue, port-a-cath, whirled around in my head like a fast and jerky carnival ride.

I suddenly felt incredible anger welling up inside of me.  I was contemplating such thoughts as, chemotherapy? This is all you have to offer my daughter for treatment of this cancer?  How can our country invest billions of dollars in our military and space programs, yet not be focused on a cure for cancer? Look at all the profits multinational companies keep gaining? How about the radio advertisement I just heard the other day about a cellular phone company investing hundreds of millions of dollars to create a more efficient product for their customers? Special interest groups debating for their causes in our government and the millions of dollars we spend each year on programs that have nothing to do with our children’s health? These thoughts flooded my mind and I found myself wanting to go and kick some serious butt in the Legislature or grab a microphone from someone down at the county fair that was going on and start yelling about how we need to take care of our sick children.  I dreamed that if everyone in this nation put $1.00 in a cancer research fund each year, there would be millions of dollars to work with.  Then could we cure this ugly menace? Questions and debates whirled around in my head like a tornado and I found myself becoming the mother lioness prowling for food that would provide life for her cub.

I consciously calmed myself down and worked to keep a positive and confident demeanor. I reminded myself Nicole was very lucky to have such wonderful and caring physicians and nurses.  They treated all of us gingerly, yet gave us the information and facts of her bone cancer with straightforwardness and professionalism they have found to be effective.  I was surprised at first when they involved Nicole in nearly every discussion.  It was later clear to me, they were treating Nicole with the utmost of respect and wanted her to have a say in her treatment.  After all, this was all about her.  At 10 years old, it was Nicole’s life that was on the line.

The roller coaster of emotions I was experiencing was daunting.  One minute I was angry, the next minute hopeful.  One minute, sad and fearful, the next minute encouraged.  This emotional ferris-wheel seemed to be a pattern attaching itself to me.  Perhaps if I let myself experience each emotion as it came, I would be able to get through this in one piece.  I had read about people who had gone through a traumatic event and subsequent grieving process by stuffing all of their emotions and not allowing themselves to feel their feelings.  Apparently, the feelings would come out sideways in some unproductive release, like blaming others, yelling at someone or kicking the dog, excessive drinking or doing drugs.  Anything to just be numb.  I had to keep it together and deal with these emotions in a positive productive manner in order to be there for Nicole.

I reflected on my previous plan when I moved to Rochester, to find a full time job in the medical profession.  I had worked in the medical profession in the past and was looking forward to landing something similar in Rochester.  It was soon apparent to me that my only priority and job I would have now was Nicole. As Nicole’s Mom, I wanted to be available and on call for her anytime day or night.  With Nicole’s new treatment, there were an array of tests involving frequent blood draws, x-rays, hearing tests, CAT scans, MRIs, electrocardiograms, echocardiograms, bone scans and frequent oncology office visits.  All of which were time consuming. Yet, I knew that God certainly works in mysterious ways bringing Nicole’s nucleus family to Rochester, home of Mayo Clinic.  This move was definitely not a coincidence.