Rory Gardiner's Webpage

13, Aug, 2009

Thursday 13th August 2009


I nearly lost it last night.  Only the need to comfort and reassure Rory, and be strong for him, stopped me becoming hysterical.  Rory woke from yesterday's afternoon sleep flushed, unhappy and tired.  I read him a story but felt something was off so took his temperature.  It was 5.30pm he was 38.2 degrees.  I rang the Oncology ward nurse for instructions.  She told me to take his temperature again in an hour, and to bring him in if he was 38.5 degrees or unwell.  I frantically started throwing gear together in case we had to head up to Starship for the night.  At 5.45pm he didn't look good so I took his temperature again, it was 39 degrees.  I grabbed him, the buggy, and the gear and raced up the hill.  By 6pm his temperature had reached 39.5 degrees, and he was flushed, crying, sore and afraid.  The nurse took a blood sample from both his lumens (Hickman line), gave him pamol, and started IV fluids.  Rory remained in the same condition until the Doctor arrived at 7.15pm.  I was so scared.  I looked Rory in the face and thought 'oh my god he's going to die, and it's my fault because I took him out rather than keeping him confined'.  The doctor gave him a physical examination and couldn't find any obvious source of infection.  She charted two iv antibiotics and increased the volume of fluids they were giving him.  Rory was admitted to Ward 27b at 7.45pm and I tried to settle him to sleep.  It was a very restless night, the nurses came and went giving him fluids and medicine and monitoring him closely.  Rory was feeling very sick and frightened.  He cried a lot, almost to the point of being inconsolable, tossing and turning.  He started to complain of pain in his throat. 

Rory and I eventually gave up trying to sleep at 6am.  He was a little better this morning, more like himself.  The Nurse put him on the scales and his weight has continued to decline.  He is now 22.8kg.  Another Doctor came and examined him.  Rory has ulcers in his mouth, throat, and likely his stomach.  He has been placed in isolation in case he has swine flu.  The Nurse took a swab up each of his nostrils this morning (way up which he did not like).  The preliminary results of his blood cultures show he has an infection in his blood.  There is no way to determine its source.  This morning the Doctor started him on a third antibiotic based on the blood culture results.  Rory will need to receive the iv antibiotics a minimum of 10 days, so he will not be leaving Ward 27b before the 23rd of August.  This means either Sean or I will need to stay and sleep on the ward too. 

The Doctor said the infection is not something Rory caught from someone else, but is because the 'bad' bacteria in his body have overwhelmed the 'good' as his immune system is still at rock bottom as a result of the chemo.  The Doctor said we should expect this to happen each cycle!  Visitors have been restricted.  There has been an outbreak of measles in the community which is a huge risk to the patients in Starship so children are not being allowed to visit unless the parents can produce evidence they have received two MMR immunisations, and are well.  Sam has come down with a cold today he will be staying with Grannie and Grandad Gardiner at Whakapara this weekend, so the boys will not be seeing each other.  This is a shame for both of them. 

Rory went down hill as the morning progressed, and his temperature was over 38 degrees by lunchtime.  As if this wasn't enough he had a mild allergic reaction (Red Man's syndrome) to the new antibiotic they administered.  The skin on his scalp, around his eyes, mouth and nose went bright red, and he started itching, so the Nurse had to give him an anti-histamine.  He received more pain relief at lunchtime and has perked up a bit this afternoon.  He is watching Scooby Do and Ben 10 on TV and has eaten a few Pringles chips (one of the few foods I can get into him).

The Doctors are concerned about Rory's declining weight and nutrition.  He is eating and drinking little, and it is a struggle to get him to do this, so they are going to put in a naso-gastric tube today to ensure he gets sufficient daily nutrition.  This will hopefully result in a little weight gain to buffer him against the remaining three chemo-cycles.  He will then be able to eat what he likes, when he likes, without any pressure.

Nicola, who manages the stem cell transplant patients, and the Dietician, have been in to check on Rory.  Last night while we were waiting for the Doctor my brother, Uncle Guy, called to see how Rory was.  He had been away skiing for the weekend, and at a two day conference in Hamilton.  Not long after Nana and Poppa Honnor called.  They had just landed in Hawaii (around midnight) and were ringing to see how Rory was bearing up.  Unfortunately I had to tell them all things weren't so good.  The Doctors and Nurses keep telling me this is par for the course, and because Rory is getting such a high dose of chemo the response of his body is expected.  The other children who receive chemotherapy go through the same things, and they all get through it, to the other side.  Sometimes this seems a long way off.