Journey

We are happy to have made it home.  It was good to see Sam and Caitlyn last night and to be back in our own space.  It is incredible what has happened in less than three weeks.  The surgical team checked Rory yesterday morning.  They are happy with his healing.  Now all it is going to take is time. The nerves heal at 1mm a day and the facial nerve is 15cm long so it will take 150 days for the left side of Rory’s face to resume normal function.  Currently Rory’s left eye doesn’t open and close properly.  He needs drops several times a day as his eye alternatively gets dry and waters.  The left side of his mouth doesn’t have any sensation or move much (he smiles on one side of his face).  He cannot chew and has difficulty swallowing.  We have to clean his mouth with little sponges on the end of sticks with mouth wash to keep it clean as he has lots of stitches and teeth removed.  We have cream to put on his healing incisions.  He’s going to have some impressive scars.  He still has steri strips by his left ear which hold together the area with the most tension which is healing slower.  The left side of his face is a bit puffy and lop sided. 

We also met with Dr Kath and Dr Stephen yesterday morning.  The pathology on Rory’s tumor is still not back.  At first it was easy to push thoughts of the results aside as there was so much in front of us to deal with and we knew it would take time, but it is increasingly difficult.  The likelihood of Rory’s survival depends on the results.  If there are clean margins it means the tumor has been totally removed and we only have to mop up any remaining cancer cells floating in Rory’s system with chemotherapy.  If there are not clear margins it means some tumor remains to grow and spread and we may have to consider radiotherapy as chemotherapy alone is unlikely to be enough.  Given radiotherapy caused the current cancer neither Sean or I are very keen on this.  The lack of pathology results also means we don’t have a plan for the next five months.  Sean has run out of leave and I haven’t been working so we need to go back to Taranaki Regional Council, our employer, and discuss what options are available to us.  I also need to go to Inglewood High School to discuss Rory’s attendance at school this year.  He is due to start as a Year 13 on Wednesday.  He wants to go back but he will need a much higher level of support.  His attendance for the first two terms is going to be sporadic at best.  Colt is due to start school on 3^rd February.  Everything is currently an unknown which makes it close to impossible to plan.  Rory is scheduled to return to Auckland on 4^th February.  On the 5^th he will have a check up with Dr Nick and Dr Stephen.  He will be admitted for the next cycle of chemotherapy (whatever that will be).  I am hoping we will have more certainty by the end of next week.  It is a shame we have it hanging over us during our break at home.  I will have to make a big effort to push it into a corner.