Christopher Court

Caring for Chris

Over the next few days, the family concentrated on keeping Chris comfortable and on the assumption that he could still see and hear, provide him with entertainment.  As before family, friends and the community rallied round to provide food, shoulders to cry on and services.  One such service was provided by Sandi, a professional masseuse, who made several visits to give Chris massages - excellent for body and soul.  The hospice company also provided a Reiki massage and aroma therapy for Chris.

Over the next few days, the smiles faded and Chris opened his eyes less and less.  His gag reflex was diminishing and he was having more and more trouble coughing up anything in his throat or lungs; this required more and more use of the suction tubes.  The tumor was also affecting the part of the brain stem that controls body temperature.  He was on a number of different drugs for pain (although we do not believe he had any), for the secretions, to keep his fever down, and to keep him calm.  No one knows how much he was aware of his surroundings and what was happening to him during those last days and whether or not he was afraid or panicking inside.

It was very difficult to come to terms with the fact that Chris was dying.  Most parents have cared for sick children and they look for signs of improvement.  Chris' parents did this also - they would see a smile or a faint movement and see it is a positive sign even though they knew there was no hope.

Because they did not feel they would be able to think clearly after Chris' death, his parents decided to start organizing the funeral.  A representative from a local funeral home came to visit to start making arrangements.  It felt like a betrayal to be discussing the funeral while Chris was alive upstairs in his bedroom. 

Someone was with Chris around the clock.  During the day someone would be reading to him or listening to music or one of his favorite TV programs.  At night there was a rota for sleeping in his room and giving him his medications.  No one who slept in his room actually got much sleep, they just lay there listening to every breath and wondering what a future would be like without Chris.

On several occasions, Chris' parents sat with him and tried to explain to him what was happening; that a new tumor had grown; that the doctors could not fix this one and that he was going to be with Jesus and the grandparents he often talked about but never met.  He would see his aunt Terry's dog Bobby and the pony he used to ride - Peanut.  

It is more often the case with this disease that you get more notice that the treatment has stopped working and Chris' parents had always planned to use that time to explain things to Chris.  They did not want to talk of death all the time there was a glimmer of hope.  This new tumor grew so quickly that they were robbed of that opportunity.