Christopher Court - Chris suffers a setback

Chris suffers a setback

On Sunday October 16th the family went to a Fall Festival at the Moravian Tile Works in Doylestown.  Chris seemed tired and was stumbling a little, but everyone just thought he was tired.  Later the same day Chris went to Karate and seemed to be having trouble balancing, but he made it through the class and seemed otherwise normal.  No-one thought "tumor", after all he had just had an MRI that showed a massive improvement.

On the Monday, Chris was sent home from school because he was sleepy and generally not himself.  When it was suggested he go to see the doctor he begged not to go.  He was booked in for his bi-weekly chemo visit the following day and so it was decided to wait until then.

On the drive down to CHOP on Tuesday morning, Chris seemed tired and was having trouble playing games on his iPad which made him very frustrated.  He walked into clinic as usual.  When the doctor examined him and did the usual neurological tests, it was clear something was wrong.  They decided to skip chemo that week and ordered another MRI to see what was going on.  They sent Chris home and organized an MRI at the King of Prussia facility for Wednesday.

On arriving back at home, Chris fell asleep on the couch.  He awoke about an hour later and asked for pasta.  He also seemed unable to walk at this point.  He went back to sleep for a while and this time when he awoke he was unable to move his legs or his arms and could not speak - all he could do was cry.  Chris' dad put him in the car and immediately drove down to CHOP.  On the way Chris' mom called the doctors and told them he was coming in, hoping that they could fast track him through the ER.  This was only partially successful, but eventually Chris was admitted to Intensive Care.

The doctors put Chris back on high doses of steroids and an MRI was ordered but could not be scheduled until late on Wednesday.  Chris' grandma had been visiting from England for the previous 4 weeks and was due to fly home on Wednesday.  She would have to fly home before the MRI and would have to wait to hear the results.  For all but the last couple of days of her visit, Chris had been perfectly normal and it wasn't until this point that she really realized how sick he was.  It was hard to know what was going on in Chris' mind; he could cry and he could answer yes/no questions by blinking his eyes.  When asked if he was in pain, he said no.  When asked if he was scared, he said yes.  

During the preceding couple of months, Chris had been spending one-on-one time with his Karate teacher Bruce who had been teaching him the art of meditation.  When Bruce visited on that Wednesday Chris was very distressed and crying.  He spoke quietly to Chris and they meditated together;  Chris calmed down and fell asleep.  It was amazing that a seven year old could grasp the concept of meditation and to be able to practice it at such a distressing time.

That evening the doctors and nurses started preparing Chris for the MRI.  They decided they would need to insert a breathing tube.  Chris' parents stayed with him while they did this.  A junior doctor made several attempts to insert the tube and failed.  Eventually a more senior doctor took over and was successful.  It was very upsetting and difficult to watch.

Chris was wheeled away for what turned out to be his final MRI.