AIDAN'S DIARY - NOVEMBER 1999
1 Nov 1999
Aidan’s IV line needs to come out about midnight. Steroids given orally about 4am. Aidan vomits soon after. Mum on mattress in Aidan’s room. Aidan keeps vomiting. By 6am, things going downhill rapidly. Aidan keeps vomiting. Observations increased to hourly and getting worse. Aidan is in lots of pain but settles on top of Mum. Blood pressure extremely high, pulse dangerously low. Neurosurgeon, Dr. George Wong, visits, rings theatre and we are on our way 4 hours early. Carry Aidan to trolley, climb on it with him somehow, wheeled to theatre. Listen to Sting in theatre waiting room and sing for Aidan, who is practically unconscious. Manage to get out from under Aidan and off the trolley without hurting him. Anaesthetic given and I kiss him goodnight. Led out and given a big hug by Claire, my school friend that I haven’t seen for four years. Calmly spend waiting time with Nanna, Grandma, Claire, Al, and Aunty Flo. Dad does every odd job he can think of then walks to Subiaco with Aunty Nicola and Aidan’s stuffed Barney. Four and a half hours later Aidan is taken to ICU and is OK. Aidan is a strange grey colour, is receiving the last of a blood transfusion, has a CSF drain coming from his head and has wires and IV lines all over him. His back and head is stained pink from the surgical cleaning stuff and there are screw holes where they clamped his head. However to worried parents he looks perfect. Aidan delights the nurses overnight by scratching his bum and picking his nose at the same time.
- Mum & Dad
2 Nov 1999
Nurses attempt to roll Aidan onto his other side, but he's just not interested and informs them from his Morphine induced slumber "I don't like it". Later he declares "This is the worstest day!". Family and friends lend shoulders and ease the strain.
- Dad
3 Nov 1999
Aidan declares "You're all stupid". Neurosurgeon, Dr. George Wong, is pleased with progress. Ventricular catheter is kept busy draining CSF (cerebro-spinal fluid) resulting from swelling after the operation.
- Dad
4 Nov 1999 to 6 Nov 1999
Aidan still in ICU. The days all blur together. Lots of support from family and friends come by at regular intervals to visit and offer good cheer. Mum and Dad have had their fill of less than appetising hospital food. Dad, Neil & Liz go hunter-gathering at nearby pizza and cheese cake shops for a taste of normality.
- Dad
Aidan with Dad at ICU.
Aidan eating icecream at ICU.
6 Nov 1999
Return to regular ward (5A).
- Dad
11 Nov 1999
Discharged from hospital. We're all home again for the first time in 2 weeks. Real food and our own beds. Woo-hoo !!!
- Dad
12 Nov 1999
Aidan visits Sir Charlie Gairdner Hospital Radiation Oncology Department to have his cast made for the masks. The mask will be used to keep his head still during radiation treatment.
- Dad
Aidan with Mum before face mould.
Aidan's mask fitting.
15 Nov 1999
Aidan returns to Princess Margaret Hospital for minor surgery to
receive
an Infuse-A-Port. This is essentially a receptacle which sits under the
skin to receive needles and has a catheter which leads to a major vein,
in this case the jugular. It will be used for administering chemo drugs
and taking blood samples. Not a pretty sight, but it means Aidan
doesn't
require a needle in the arm every other day.
- Dad
16 Nov 1999
First attempt at fitting the mask, with Aidan lying face down - not very impressed at all.- Mum
17 Nov 1999
Second attemp at mask fitting - much easier. After 45 minutes of planning X-Rays Aidan was sound asleep on the table.
- Mum
26 Nov 1999
Received good results from Aidan's lumbar puncture and second MRI (Magnetic Resonance Image).
The lumbar puncture was performed during the Infuse-A-Port surgery. A fluid sample was taken from his lower spine and tested for potential cancer cells from his brain that may have drifted down in the spinal fluid. If cancer cells were in the lumber region it would have upgraded his status from medium to high risk and resulted in higher levels of radiation.
The second MRI was used to determine the nature of an abnormal growth near the pineal gland in the centre of Aidan's brain. After his major surgery on 1 November, one of the neurosurgeons, Dr. Steve Lewis, mentioned the growth, but suggested it was only a cyst which is carried by a small percentage of the population. The radiologist, Dr. Fiona Cameron also spotted the growth on the first MRI and wanted confirmation. The jury is out and a cyst is in vogue. What's that word ? Elated !!!
Aidan's balance is returning, slowly, and with it his mobility. He has been imitating a penguin on a very cold night most of this week, but it's been a great sight. He's rather pleased with his own progress and keeps calling out for us to "watch me", which of course we do and send out a barrage of compliments. His oncologist, Dr. David Baker, thought it could be some months before his walking and gross motor skills return. Surgery played havoc.
Agreed to place Aidan on a clinical trial of radio and chemo therapy, the results of which are available to other hospitals associated with the Children's Cancer Group (CCG) in North America. Aidan's treatment would be very similar whether he is on or off the clinical trial. Princess Margaret Hospital is the only hospital outside North America to have full membership to the CCG. Similarly, results from other patients are available to Aidan's doctors. A portion of Aidan's tumour will be taken to hospitals in Los Angeles, California and St. Louis, Missouri by Dr. David Baker to assist with future research.
Aidan's chemo therapy will consist of :
Grandad (Trish's dad) organises a ride on a fire truck; he was a volunteer fire fighter for many years. Dad, Grandma (Dad's mum) and Caitlin come along for the ride. Drove past Nanna's house and payed due respects with the bull horn.
- Dad
Aidan, Caitlin & Grandad at Kalamunda fire station.
30 Nov 1999
Underwent first doses of radio and chemo therapy (vincristine). All went well. Returned home feeling nauseous. Went from happy to moaning in an eyeblink right up until bedtime. Didn't eat any dinner.
- Dad
Last updated: 20-Nov-2006