Journey

At the clinic appointment yesterday afternoon with Dr Stephen we were desperate to hear the CT results but were also afraid there was only one path forward.  Stephen kept us waiting nearly an hour as he had been downstairs with the Radiography team discussing the report.  The CT shows the tumor has not grown during the 10 weeks of the two MAP chemotherapy cycles.  This was as good a result as we could hope for.  Osteosarcoma rarely shrinks on chemotherapy because of its bony framework.  The tumor initially grew rapidly so no growth indicates the chemotherapy is having a positive effect.  Dr Stephen has also been keeping an eye on three small nodes, one of which glowed on the PET scan.  They were not biopsied so we will never know whether they were cancer or not but they have all shrunk.  The CT results are good enough for surgery to proceed.  Dr Kath said parents follow the path which provides the greatest chance of life and we are going to do the same.  Some people may question our decision to go ahead with surgery.  Rory has had a lot of treatment, and suffered more than any child ever should, but we are not willing to let him go while there is a chance.  We have talked with him about the two paths in front of us and explained to him he has a say in the decision.  It is his life, his body and his spirit.  Sean and I cannot keep going without him.  Dr Stephen explained to Rory he is willing to keep going.  Rory told us he wants to follow the path which says life, so we will be there right beside him.

The stars have not aligned for surgery pre-Christmas and we are happy about this.  Rory needs time to recovery physically and mentally.  He needs to turn off cancer and its treatment, regain his strength, celebrate Christmas and enjoy a little of the Taranaki summer.  He is to receive a dose of Doxorubicin and Cisplatin on Thursday and Friday.  We will return home on Sunday.  Surgery is scheduled for when Dr Nick returns, soon after 6^th January 2020.  There is one more hurdle.  Rory will need a PET scan just prior to surgery to check there is no metastatic disease (the cancer hasn’t spread anywhere else).  We are still awaiting on the opinion from America to finalise some of the details. 

Rory was discharged from the ward on Monday morning after the CT scan.  Dianne from Hearing House and the Med-El rep (only person in New Zealand who works for the company who make Rory’s cochlear implants) called in and tested the implants prior to the next dose of Cisplatin.  Cisplatin contributed to Rory’s hearing loss after treatment 10 years ago.  Sean and Colt drove home this morning.  We were sad to see them go but they both had ants in their pants and needed time outside this week away from the hospital.  Today Rory had a repeat GFR test.  It is the test where they inject him with a little bit of radioactive material and look at how well it is expelled by his kidneys.  We have spent some time stretching our legs this afternoon.  We are watching the scaffolding go up in Auckland Domain for Christmas in the Park on Saturday night.