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Part 1 Hospice Series: The Unspeakable Word

karenhinesfamilyby Karen Hines, Caregiver

Read Part 2, Part 3

It was a quiet Saturday afternoon, our social worker was stopping by to see how we were all holding up, or so I thought.  You see, our daughter Cassie had just had surgery to remove a large tumor on her spine, which was causing severe leg pain.  Cassie had been a kidney cancer patient for the last four years so we were all pretty used to the scan, surgery, recovery life of a chronic cancer patient.  Her last set of scans revealed several tumors on her spine so Cassie had decided to remove the largest of the tumors, causing leg pain, and join a trial to hopefully shrink the rest. The problem was, before she could join a trial, the pain and numbness in her arms was getting worse.  The remaining tumors were growing fast.


I remember the day so clearly, Chris, my husband, sat in the chair alongside the large puffy sectional that Cassie, Kathleen our social worker, and I relaxed in.  Kathleen sat closest to Cassie and talked directly to her.  They talked about her arm pain and how it was scaring her; Cassie was very afraid to lose function of her arms.  Kathleen had spoken to Cassie’s oncologist and we were all aware of the surgical options to relieve the pressure causing the pain.


Unbeknownst to me, Kathleen was discussing ALL the options to Cassie today.  When I heard the sentence, “Are you aware of what hospice care is?” I just about bolted out of my chair and tackled her.  ARE YOU KIDDING ME!!  Did you just say HOSPICE to my 21-year-old daughter that has been studying for finals and plans to study abroad next summer??  There were sirens going off in my head.  Cassie had always been a fighter, she was strong, focused and happier than she had ever been…everything was going right in her world and this cancer was slowing her down.


Don’t get me wrong, Chris and I were aware time was not on Cassie’s side.  We knew there was no cure for metastatic kidney cancer but we believe in miracles and Cassie was so young and strong.  I probably took my hand and closed my jaw that must have dropped to the floor.  I remember looking at Cassie and she was beholding Kathleen with interest.  “Is hospice a place?” she asked.  It was in that moment I realized Cassie wasn’t afraid of anything, not even death.  I knew every option was on the table for Cass…even heaven.   Kathleen began to explain hospice in a way that calmed even my biggest fears.  Cassie asked questions and simply logged this as one of her options.


That was the very beginning of our hospice journey.


Cassie decided to have a second spinal surgery to remove the tumors affecting her arms.  Beginning in December 2011, Cassie spent six weeks in and out of the hospital having surgeries, trying to recover while the remaining cancer grew.   Cassie never healed enough to join a trial and eventually her liver began to fail.


When you spend as much time in the hospital as we did you learn to recognize all the little signs.  After Cassie had an ultrasound of her swollen abdomen, the tech, whom we’d seen many times, gently rested his hand on my shoulder and with glassy eyes said, “I’m sure the doctor will be in to see you soon.”  His heart was broken; he knew more than we did.  The rest of that day, the doctors didn’t include her room in their rounds.  The nurses that had taken care of Cassie for years didn’t stay to talk; they did their job and quickly retreated from her room.  Sometimes Cassie would ask “Why is everyone acting weird?” or “Where are the doctors?”   I replied, “Must be a busy day on the floor.”  I knew better…they knew too much.   Chris had talked to Cassie’s oncologist by phone that night and she explained the results of the ultrasound; there was only one option left, hospice.  Cassie’s oncologist called her to say she would be in first thing in the morning to go over the tests and discuss her options.  This settled Cassie, she slept well that night.   I did not; I was terrified of the morning.  How would Cassie react to the news?  How would we hold it together?


This was the beginning of the end.  It was probably the most profoundly sad/miraculously beautiful experience I will ever have in my life.  God has a way of resting in the deepest pain a family could imagine and granting the grace only He can provide.   Forty days of hospice would change our lives forever.



Karen Hines is a mother of three, a wife of 30 years, a full time dental hygienist and the dynamic Awareness Director for the Cassie Hines Shoes Cancer Foundation – Changing Lives One Step At A Time. 



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