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Christopher Court

 The MRI results

Christopher Court at CHOP after the relapseThe MRI results did not come back on the Wednesday evening as expected; the family had to wait until Thursday morning.  Chris' parents were called to a meeting room with lots of new people in it - this did not look good.  The doctors explained that the MRI showed a new and very aggressive tumor had developed in Chris' brain stem.  They looked back at the September MRI and could see no evidence of it, so it had developed in just a few weeks.

Because of the location and because Chris was already on chemotherapy when this new tumor developed, the doctors concluded that there was nothing that they could do.  Understandably, this news was completely devastating and not what anyone expected after the September MRI.  There were so many questions:

  • how could this happen so quickly?
  • surely something can be done?
  • how long does Chris have?
  • how will we live without him?
  • how do you tell your child he is going to die?

Because of the progression over the preceding few days, the doctors felt that Chris only had one to two weeks to live.  It was likely that the tumor would progress and affect his ability to breath.

The new people in the room were representatives of the Palliative Care Team.  They asked if the family would like to take Chris home to die in peaceful familiar surroundings.  The family said they would like to do that and the team sprang into action to make it happen later that same day.

Chris' parents asked about organ/tissue donation as this is something they had been thinking about since the beginning in case the worst should happen.  Unfortunately, hospitals will not take organs from cancer patients because of the risk of spreading the disease to the recipient.  They will however take corneas for transplant and tissue for research.  It was decided that Chris' brain would be donated for research and it helped to think that he would go to his grave with the cancer removed.

The family managed to make it through the meeting without falling apart, but once it was over the devastating news engulfed them as they realized they were going to loose their precious son and that they would have to start telling people, not least of all Chris himself.  Chris' dad started making phone calls to family and friends.  It was almost impossible to get the words out and no-one was expecting to get this news so soon after the September MRI.

After the phone calls, Chris' dad paid a visit to the clinic to inform the nurses and Child Life staff that Chris was going home and would not be back.  Miss Meghan dropped what she was doing to go and visit Chris.  She took a hand molding kit and paint and paper to make hand prints.   The doctors, nurses and Child Life staff had all become very fond of Chris and this was very difficult for them too.  It is a great testament to them they can continue their work despite so many tragedies like this.

At this point Chris was still aware of his surroundings and could smile, cry and respond by blinking.  His parents did not want him to see their distress and did not want people discussing what was going on in front of him.  He was asked if he wanted to go home, and of course, he did.

The paper work was completed, hospice care and equipment was arranged for the house and an ambulance was organized to take Chris home.