Journey

Congratulations Jack for being accepted into Police College.  Rory thinks this is awesome, but he will miss hanging out with you on Wednesday afternoons. 

The chemotherapy protocol for osteosarcoma (bone cancer) is called MAP after the initials of the three chemotherapy agents used.  On Thursday morning Rory received Methotrexate.  It is a yellow-brown colour and turned his pee gold.  Methotrexate takes four hours to be delivered and then a minimum of 72 hours to flush it out of the body.  Through the port Rory is receiving 210ml of fluid an hour, every hour.  He is also receiving electrolytes and anti-nausea medication.  Methotrexate is highly toxic which is why they start to flush it out as soon as the dose has been given.  It has a long list of serious side effects which I look away from.  One of the joys of receiving so much fluid is Rory needs to pee very regularly.  It all has to be caught in bottles so the poor nurses can measure and test it.  Rory is unsteady on his feet, hooked up to lines and half asleep in the night so often needs assistance.  My job is line holder and to make sure he doesn’t over balance.  Rory is in charge of all other apparatus.

I have met two incredible cancer mums with children who have the heart of a lion.  On Thursday I met Kathy who is mum to Lexi aged almost 6.  Lexi was diagnosed with Chondroblastic osteosarcoma of the skull a couple of years ago.  She underwent multiple neurosurgical procedures and suffered serious complications for over a year. She is still on the road to recovery but thankfully free of cancer.  Lexi is a beautiful little girl with a wide smile who is now at school with a little help.  On Friday I met Christina who is mum to Lenny aged 18.  They are from Taranaki and are an active family like us.  Lenny was diagnosed with osteosarcoma in his leg earlier this year.  He underwent major surgery and reconstruction.  He is currently around 75% of the way through the MAP protocol.  Lenny is currently trying to expel Methotrexate just like Rory but has been at it several days longer.

Dr Stephen and Nurse Tracey have been in.  We have concerns the tumor is still growing.  The Head and Neck specialist team meet mid next week where they will discuss Rory’s case and make a preliminary decision as to whether to operate.  It is likely we will bring the scan date forward to next week (week 5 rather than week 9).  The rule of thumb with osteosarcoma is that if a tumor can be removed it should be; as survival rates rise dramatically with complete removal of the disease.  Rory’s tumor is in a difficult place.  It is in the jaw bone (mandible) where it hinges on the skull by the ear.  The Surgeons need to consider whether removal will compromise his basic life functions such as breathing, eating and drinking and speech. 

Thank you to; CCF for the healthy food to supplement the Starship cuisine, the Tong family for the card and magazines, and Mandy, Jo and Smokeylemon Website Design for the laptop.  Our laptop became e-waste when we were on the break home so it was an overwhelming wonderful gift.  It will allow me to continue Rory’s blog on the journey.