Hope in my heart

Yesterday I felt hope in my heart.  Rory was taken into a room at Auckland Hospital and a physical examination was done of the tumor.  This was carried out in front of a camera for a bunch of specialists in another room.  Following the exam Rory returned to the ward.  Sean and I waited for the specialists to discuss Rory’s case and provide an opinion.  It was worse than waiting for the results of a job interview.  Dr Nick McIvor, one of Aotearoa’s most experienced head and neck surgeons, spoke with us.  Dr Stephen and Nurse Tracey were there for support.  Nick said in 25 years he had never seen another tumor like Rory’s.  It is incredibly rare.  He said they can undertake the operation to remove the tumor.  It is major surgery but they would expect Rory to have close to normal function following reconstruction using bone and muscle from his leg.  This was a huge relief to hear and quite different from the feedback we received last week.  However, post-surgery there will still be cancer cells in Rory’s system.  These would need to be targeted with follow-up chemotherapy and possibly radiotherapy.  Without the chemotherapy there is a high chance of recurrence, particularly in the area of the original tumor. 

The plan is to carry on with the next two (possibly three) doses of chemotherapy and then do a scan.  This will provide information on how well the cancer cells have responded to chemotherapy.  They would like to see shrinkage of the tumor.  The big question is whether no new growth indicates a good enough response to chemotherapy for the operation to go ahead.  The team are getting Rory’s case reviewed by international expert Dr Peter Anderson in Ohio, USA. 

Sean and I met with Radiation Oncologist Dr Ramesh.  He advised us osteosarcoma is not easily killed by radiotherapy.  They need to give very high doses (60-70Gy) to be effective and there are side effects.  Rory received high dose radiotherapy to the brain and spine 10 years ago to treat medulloblastoma.  This limits the radiotherapy the Drs can give him now. At best radiotherapy may only provide some localised control.  It seems crazy to consider radiotherapy as a treatment option when this is very likely the cause of the osteosarcoma.    

Rory received chemotherapy agents Doxorubicin and Cisplatin Thursday and Friday afternoon.  In among the tediousness he enjoyed a wonderful video call with the staff and students from the Inglewood High School Learning Centre and a visit from our friends Janine and Michael.  He spent some time with Teacher Jan and undertook a cognitive assessment with Dr Kath. 

I shouldn’t forget to mention little brother Colt is present in our days.  He has been attending school at RM House, strumming at ukulele sessions, making friends with children from other regions, exploring his creative side at art class, spending hours walking around Auckland Domain and the CBD and playing his ipad alongside Rory.  It will be a shock for him to go back to 6-hour school days and ham and cheese sandwiches next week.