Rory Gardiner's Webpage

14, Oct, 2009

Wednesday 14th October 2009


Nothing has grown from any of Rory's samples.  In other words, no infection has been found.  This doesn't necessarily mean he doesn't have one though.  The fact he had a low grade temperature, coupled with his lack of immunity (his white blood count remains at 0.15) means the Doctors are not prepared to release him from Starship as he is highly vulnerable.  They want to keep him safe, and closely monitored in case he spikes another temperature.  So we all wait.  Wait for his white blood count to rise, as a result of the stem cells (bolstered by the GCSF) repairing his immune system.  This takes longer to occur with each chemo cycle as his system struggles to overcome the toxicity of the treatment.  As a result Rory will be on the ward at least until Friday, possibly until Monday.  He continues to receive iv fluids and antibiotics, plus his milkshake and maxilon to ease it through.  We continue to give him pamol when he needs it, and the daily GCSF injection continues.  We tried giving Rory 60ml of water down his ng tube this afternoon to see if he would tolerate it, to aid his hydration. 

It was a night of very little sleep.  Rory was over tired and couldn't settle.  He needed to pee regularly, and the Nurse came in frequently.  I was shattered this morning.  It's 2pm and Rory's miraculously still awake but has slowed in activity to watching Scooby Doo on tv.  Sam has attended RM House school today.  This morning they had a cooking and computer session, and this afternoon stretch and grow, and art.  He seems to be coping with it, although I know he misses his friends, his teacher, and the field to run around on at lunch time.  A lovely parcel arrived from my old high school friend Michelle Turner and her family (Rob, Ethan and Niamh).  The boys were spoilt with comics and books, and there was a lovely green Ben10 t-shirt for Rory which he was thrilled about.  Thanks Michelle, we will have to make a trip down to Palmerston North to see you some time.  The potential for a ride in a real tank made the boys want to leave Auckland immediately!  It is quiet this afternoon as we wait for Nana and Poppa to arrive from New Plymouth.  It has been four months since we last saw them and we are all looking forward to it. 

I continue to think about what the future holds for Rory.  The communication between parents on the international Medulloblastoma email group continues to blow me away.  In some ways it is a double edged sword.  Not knowing what the future holds means we are not constrained until something occurs, and it prevents us worrying and becoming overwhelmed at what might be ahead.  But forewarned is for-armed so we will be able to do the most we can to make sure Rory gets the most out of life.  Many of the medulloblastoma survivors, those which haven't relapsed, are struggling when they get to high school with growth and maturity problems, fatigue, short-term memory loss, and slowed cognitive thinking.  Some are being turned away from university, some are unable to drive a car, or hold down a job.  Some are struggling socially.  A pattern starts to form with the more childrens journeys I read.  Similar deficits.  Parents stuggling against systems to get the best for their children.  Many commenting they couldn't wait until treatment was over, when in reality it was just the beginning.  I try and stay strong and refuse to fear the future.  I refuse to let Rory believe anything less than the sky is his limit.  I intend to push him as we push Sam.  I intend to do everything I can to make sure he has a happy and fulfilling life.