Journey

Who really knows how well Rory’s body is functioning.  As a 7-year old he had four cycles of high dose chemotherapy.  It was so toxic he required a transplant of his own stem cells, which had been harvested prior to chemo, to recover.  Fast forward 11 years and Rory has been given four doses of cisplatin, 5 doses of doxorubicin and 8 doses of methotrexate, plus surgery, over the last 30 weeks.  He looks like a cancer patient.  His skin is pale and almost hairless, he is always tired and his platelets are continuously low.  The photo in todays blog shows an x-ray of the left side of Rory’s face.  You can see the titanium chain and staples used to reconstruct his jaw, the cochlear implants and the shunt cable.  Modern medicine has kept Rory alive but the changes are substantial. 

Dr Stephen sent us home on Wednesday.  Rory’s platelets were too low for him to receive doxorubicin and the echocardiogram report was not available (we are still waiting for it).  We will go ahead with the missed doxorubicin if the report says Rory’s heart can handle it.  The platelet level needs to be higher for doxorubicin (75) and the level will not be if we carry on and give more of the methotrexate planned.  We need Rory’s platelets to rise so we wait in limbo.  A blood test at Taranaki Base Hospital this morning showed the platelets were only 47 but the sample was not 100% reliable due to clotting, a reoccurring problem.  Rory has run out of arm veins to draw from so they are doing a finger prick or a draw from his hand.  We will repeat the blood test on Tuesday (and draw from the port) so we get an accurate result.  We will be ready to return to Starship as soon as the platelets give the green light. 

At the Hospital this morning Rory had his feet checked as he has five wounds.  Rory is very clumsy and weak so he keeps knocking and stubbing his toes.  As he has very poor circulation in his feet (they are like ice) the wounds get larger and do not heal.  We need to prevent them from becoming infected.  The wounds have been dressed and he is now on oral antibiotics.  We also picked up a bath lifter which is like a mini hoist which will help get Rory in and out of the bath every day and stop Sean moaning about his back. 

We are all happy to be home.  It was another quiet drive between regions, with charades for food and fuel at Te Kuiti and pit stops at metal dumps because public toilets are currently out of bounds.  We love being in bigger beds with flannelette sheets, having the fire on and for Rory to be able to move about independently with his walker (it is too much hassle to pack it for Auckland).