Journey

A lion sleeps in the heart of every brave man (Turkish proverb)

We have raised our sons to believe they are lion-hearted.  The nurses at Starship Hospital brought Rory a toy lion on his 7^th birthday because of his exceptional courage and bravery.  When the journey of life becomes difficult we have encouraged our boys to draw on their inner lion so they will endure and conquer.  The CT scan of Rory’s head, neck and chest this week was NED (no evidence of cancer).  The clear scan marks two years in remission from osteosarcoma for Rory.  That he has survived two malignant tumors in his brain and one in his jaw is nothing short of a miracle.  I have seen his lion on many occasions and have regularly drawn on my own.  So what is next?  I have spoken to his Oncologist Dr Stephen and Head and Neck Surgeon Dr Nick this week.  In two weeks we will make a trip to Auckland with Rory to have his facial reconstruction reviewed.  While his jaw has healed well and is functional it has moved from its original position.  A team of Aotearoa’s top plastic reconstructive surgeons will review Rory’s scans, medical history and examine him in person to determine if it is necessary, or there would be significant benefit, to justify repositioning his left upper jaw.  It would require major surgery, likely wiring his jaw shut until it has healed and possibly a temporary tracheostomy.  I have to take a deep breath just to think about it.  He has been through so much already. 

It has been a tough week in our household.  Sean brought a respiratory virus home from Dannevirke and we have all been unwell.  We have been burning through the Panadol, tissues and RATs (all negative).  Coughs, runny noses and fatigue have been the order of the day, coupled with confinement at home and days of wet weather.  It hasn’t been much fun.  I have been stress dosing Rory with hydrocortisone to help his system cope with the virus and to try and keep him out of the hospital.  We snuck out like masked bandits to attend Rory’s clinic appointment with the kidney specialist.  He has intermittent elevated creatinine in his blood.  This could be due to kidney dehydration so we have been told to increase his fluids.  The good news is there is no blood or protein in his urine and his blood pressure is normal.  Rory now needs a Renogram (nuclear medicine scan), monthly blood tests, and 3-monthly clinic visits.  He is at increased risk of kidney damage from the radiotherapy and chemotherapy he has received.  This is not an uncommon side-effect of childhood cancer treatment.