Rory Gardiner's Webpage

17, Sep, 2009

Thursday 17th September 2009


I have woken up disoriented the last couple of mornings, unsure of where I am, or whether I need to leap out of bed to respond to Rory.  My head is still swimming.  Sean spent Tuesday night on the ward with Rory, and last night I got to sleep at home.  You would think after all the sleep I have missed I would be able to sleep in but it doesn't happened.  The past couple of mornings I have been awake and up before 6am. 

Rory had made enough steps towards recovery for me to feel comfortable about leaving him.  I left the hospital around 11am yesterday.  Sam had spent Tuesday night at Matai's and Tracey, Matai's mum, called me to say Sam was feeling sick so she had kept him home with her for the day.  I was quite concerned, and couldn't believe I was lurching from one sick child to another.  When I got to the Newman-Horne's Sam had just woken up and was still feeling unwell.  He seems very down.  I think something is bothering him but he won't open up.  I really appreciated Tracey had looking after him in our absence, and she even sent Sam and I home with dinner (thank you Tracey).  Sam spent the remainder of the afternoon on our couch at home as chaos reigned around him.  There was so much to unpack and wash when I got home as I had been away for two weeks.  Somehow unpacking got tangled up in repacking so I found myself moving furniture from one room to the next as I got semi-organised for the packing session today.  Typical me at the moment, start everything and finish nothing!  Things aren't in too bad shape this morning, although I still can't see the dining table!

Rory had a busy day yesterday.  He had his GCSF injection and blood taken for his white blood count.  Yesterday it was 0.5.  It is coming up a lot slower than during the first chemo cycle.  This concerns me but the Doctors aren't worried.  They said it is going in the right direction (up) and we have to be patient.  Rory's ng feed is up to 65ml/hr and he was switched to the standard milkshake.  Amy the Nutritionist came to see us to discuss the changes.  He has gained a little weight to 23.55kg.  Rory had two tests yesterday, his hearing and kidney function.  They are done between chemo cycles to measure for any damage so the dose of the medication can be adjusted.  There has been no change to his hearing which is good news.  The audiologist used a pick and pliers to take a large ball of wax out of Rory's right ear, and in true gross boy behaviour he has it in a jar to show his brother!  The kidney function test involves injecting Rory with a small amount of radioactive isotope and measuring how fast it is excreted by his kidneys through blood tests at 2, 3 and 4 hours.  We don't know the results of this test yet. 

Rory was discharged to Ronald McDonald House at 3pm.  He was glad to be out of the ward and went straight for the lego box in our room.  Sean said he has been walking around the room at RM House which I am relieved to hear.  Whenever he got out of bed in his ward room and stood still for longer than a minute his legs would ache and he would have to keep moving them, and eventually cry to sit down.  The chemotherapy cycles are having a real impact on him physically, and I know at the end of the year it is doing to take a fair amount of time and therapy for him to recover.