October, 2001 | Jan Harley

Nicole’s life and everyone close to Nicole were now experiencing life through a new and altered perspective.  The consensus of Nicole’s oncology team was to place her in an ongoing clinical trial Mayo was involved in for the treatment of osteogenic sarcoma.  There were approximately 100 other patients undergoing the same protocol nationwide.  We signed up willingly for Nicole to be part of this study and to allow the oncologists to monitor Nicole’s treatment to gain insightful medical knowledge of this cancer.  The treatment consisted of a total of 18 treatments of chemotherapy, each treatment lasting for up to two weeks at a time.  The chemo was scheduled for children as two weeks in the hospital followed by one week or more at home.  This would last from October through the following July.  An overwhelming schedule to take in.

The hope was in the next few months of aggressive chemotherapy treatments, her tumor would shrink enough to remove safely and prevent amputation.  The tumor, however, was close to the growth plate above her left ankle.  Only time would tell what the impact of the ongoing chemo treatment would have on the tumor over the next several weeks.

Halloween had arrived in a blink of an eye.  It was Nicole’s first chemo treatment and she was bound and determined not to miss trick-or-treating, even if it was in the hospital.  My brave and bold hero was moving forward in her life and showing no signs of self-pity or sadness.  Her sparkling blue eyes were focused as she kept on trucking like she had discovered the hidden secret of strength that few of us will ever know about.

She had previously picked out her Halloween costume and was dressed up in a Jail Bird costume complete with black stripes and ball and chain. Her costume depicted an irony of capture and incarceration from cancer and I quietly kept these thoughts to myself.  Nicole proudly sat in her wheelchair hooked up to the chemo machine and with the courage of a soldier in battle proceeded to wheel around the hospital capturing her Halloween goodies that hospital staff so graciously handed out.  I was again taken back when I gazed upon the line of wheelchairs carrying young, bald headed children all hooked up to machines with flopping tubes, blinking lights and the sounds of beeping monitors.  As we were nearing the end of the Halloween festivities, it was apparent Nicole was getting sicker and sicker by the minute from the injection of chemo medicine.  She was soon slumped down in her wheelchair and her face was the color of ash.  Her bright blue eyes were now glazed and as distant as the moon.  The reality of this treatment now penetrated the very core of my being.  I found myself riding the roller coaster of emotions again; sadness, anger, despair, helplessness, hope, anxiety, all pulsated through my body as I slowly wheeled Nicole back to her hospital room.

Nicole spent most of that day and subsequent days thereafter vomiting until there was nothing left to purge.  You could witness her system gearing up for a major fight against this cancer aggressor.  As Nicole’s Mother, I felt so helpless watching this process unfold. I told myself I would find every positive way to comfort Nicole and do whatever was in my strength and power to support her and lift her up through this ordeal.

Throughout these many chemo treatments I was velcroed right alongside Nicole. Holding her hand, reading to her, singing to her and sometimes just laying next to her in bed with her head on my shoulder and my arms around her.  The nurses that were assigned to us were absolute angels.  I still can’t get over how supportive every nurse was that we met.  I have immense respect for the nursing profession.  Each nurse encouraged us to use imagery techniques to fight the cancer.  So we came up with imaginary Kung Fu Fighters or PACMan characters who would join forces with the medicine to wipe out the cancer cells in and around her tumor. We encouraged Nicole to visualize this often.  

I would wheel Nicole down to the children’s activity center that was staffed by a terrific team of loving and caring individuals. Mayo Clinic staff members and volunteers were there to help children in the cancer floors play with games, computers, participate in crafts or just relax on the heated water bed complete with an adjoining fish tank full of colored fish swimming about.  We would participate in the popular bingo nights at the activity center.  Anxious young patients would be wheeled down and upon arriving would find an array of gifts spread out on the table just waiting to be won and taken back to their room or home. Even if Nicole was too sick to go directly down to the center, we would play right from our hospital room.  Mayo had a video set-up in the center for sick young patients to watch Bingo on their TV. An amazing place for kids to get away from the reality of their cancer treatments.

It became my routine to fall asleep holding Nicole most nights. I know the comfort of her Mom was what she needed at that time.  I would have the nurses wake me up around 2:00am and I would shuffle back to my car and drive home to sleep.  Nicole’s Dad, his wife, and Nicole’s halfsister and halfbrother would visit her during lunch hours and often during the evenings.  Having all her loving family members there was what Nicole needed.

Because Nicole would have relief from the chemotherapy for a week or more at a time, depending on the level of her white blood cell counts; she would have the opportunity to go to school.  I am still amazed at the love and kindness shown Nicole by all her classmates, their families and teachers from Eyota!  The kids in Nicole’s class sent her cards, stopped by for visits, gave her wheelchair rides.  Priceless gifts of love, support and encouragement were being given to Nicole from friends, family, school, neighbors and church communities to help her through this challenge.

I found that children have an incredible ability to block out the negative and focus on the positive in their lives.  They have a natural ability to move forward in their life and live in the moment.  Certainly a big life lesson.