AIDAN'S DIARY - JULY 2001

03-July-2001
About this time last year I wrote a short piece on the topic of indomitable spirit which featured Aidan and two other special people. The document is in PDF format and can be downloaded from here. Make of it what you will.
- Dad

06-July-2001
Portaits for the little people.
- Dad

07-July-2001
Caught up with some of Trish's family, including her cousin Sharron and Sharron's husband Omar, who live in Egypt, for a family BBQ in the bush. Sharron's son Mohammed and daughter Aisha-Carmel helped pad out the little people numbers and added to a welcome cacaphony. The kids kicked a soccer ball and toasted marshmallows, although flambaying would be more precise. A big bunyip (Uncle Michael and Aidan) kept hiding behind trees and scaring people.
- Dad

12-July-2001
We have been watching the days zoom past, knowing all too well that "Friday the 13th" would soon be upon us. 
The big little man will have another MRI just before surgery and while still under "the influence" of the anaesthesia, will be whisked away to theatre to battle for his life (again).
I can't say it's any easier doing this for the third time, but we have found ways of staying busy, either through work or juggling the other little people.
A good many of Aidan's school friends wrote him "get well" cards to boost his spirits. It was very touching. Thanks to Mrs. Thomson (Aidan's teacher), the other teachers and the many children from Walliston Primary School for contributing to and assembling the card care-pak.
Aidan was in good spirits when I left for the evening.
- Dad

13-July-2001 (Brave Aidan Day)
What a long, long day ...
I chauffered Aidan and Trish to Sir Charles Gairdner Hospital for Aidan's MRI and surgery. Aidan became very quiet and drawn on the way to the car, so I sat with him and tried to offer good cheer in transit. No thanks Dad, not wanted. Trish mentioned that he was a bit distressed before my arrival and overnight, having given some more thought to the upcoming events. Such is the way of our perceptive little man.
Mr. Wong, the chief neurosurgeon, arrived part-way through the MRI and informed us that the tumour had grown even larger in the past month. Our confidence and spirits were now soaring some ten feet underground.
A few nurses from PMH were on hand to assist with the MRI and surgery. They hold the misconception that parent's shouldn't see their child with a ventilation tube stuffed down their nose and ushered us away from the MRI waiting room on some false pretext. We waited along the main corridor until he passed us a short while later with a medical honour guard and ... a tube stuffed down his nose. It's worth noting though that seeing the little man with such an escort and appearing so small on such a big bed did sow the seeds of doubt. Would he be OK ?
Trish passed on a mobile number to the surgeon and nurses with an understanding that they would call when there was news to report. Trish, her mother and mine sat vigil in the emergency room. Unable to sit still while worrying myself silly, I escaped on a short excursion into the city with my sister. The distraction worked wonders. We returned to find that no word had been received. It was now 4+ hours later and time to express concern. At least another half-hour passed before Mr. Wong called the mobile to indicate that Aidan was doing fine and would be transported back to PMH after they stitched him back together.
We returned to PMH ahead of the ambulance carrying Aidan and waited and waited and waited. It was a long time for worried parents. Aidan was eventually wheeled past us into Intensive Care and various monitors connected. It feels like only yesterday we were going through exactly the same scenario, but that didn't make it any easier. All up, the MRI and surgery lasted some 6+ hours.
The anaesthetist emerged from ICU and was confident about the surgery; there had been no mishaps while he was on duty, but was certainly relieved to be going home.
Trish and I entered ICU to find Aidan laid out on the bed like a big doll with lines attached to every limb. Just think of a marionette. It's so unfair for this fate to befall a little person that has done no wrong. 
Despite the thick bandage across his head, he looked in good shape.
Trish and I sat with him for most of the night and he stirred occasionally to the various noises in the room. He was in a twilight-zone induced by the anaesthesia and morphine, but we were confident he would be with us for a bit longer.
A toast to you Aidan !
So many thanks to Mr. Wong, Dr. Holthouse and the other doctors and nurses who helped with today's feat.
- Dad

14-July-2001
Trish had an even more restless night than I and was already with Aidan in ICU. I was more than pleased to find he was sitting up a little watching TV, one of his favourite morning activities. Mr. Wong arrived a little later to check on progress, was also surprised at his rapid recovery and commented something to the effect, "He's a tough little kid". 
The assistant surgeon, Dr. Holthouse paid a visit a little later and joined us for a CT scan. For the first time, Aidan asked for me to stay with him during the CT scan; he usually calls for Trish. Dr. Holthouse was pleased with the results from the scan, which indicated they hit the mark this time around.
Aidan's strength and mobility returned bit-by-bit during the day and by early afternoon he was sitting up and colouring pictures.
We'll see how the morrow fares.
- Dad

15-July-2001
Aidan is well on his way to recovery. The nurses detached the morphine line overnight and the difference was quite noticeable. He was busy doing "stuff" when I arrived; watching TV and colouring pictures. He's quite the artisan. The nurses were keeping him pumped with normal painkillers, but I suspect they will also fall by the wayside overnight.
He really is a stoic little chap. What's amazing is that an operation of this sort barely puts a dint in his stride, while Caitlin borrowing one of his pencils at an inopportune time, such as when he's using it, can really take him down.
Goodnight buddy. See you tomorrow.
- Dad

16-July-2001
Our special little man was gluing together a popsicle box when I arrived. Between you, me and the rest of the world, I think he's doing rather well. Everybody, and I mean everybody, was commenting on his rapid recovery. This may have indeed been a proud Da.
The whole tribe paid a visit today. The twins found a good many edible plastic items on the floor. After their eviction, Trish and I escorted Aidan and Caitlin up to the Starlight Room to play with the toys, play some games and even perform a rendition of Jingle Bells, with Trish tinkling out some notes on an electronic piano. Trish and I left the play-time early to speak with Dr. Baker, Aidan's oncologist.
As of today, the best option is high-dose chemotheraphy with stem-cell rescue which involves harvesting stem-cells prior to the chemo and then replenishing them afterwards. Normal chemo knocks the immune system about; high dose chemo virtually eradicates it which is not so good for fighting infections. The chemo administration and recovery period will be spent in an isolation room. Without such a toxic form of treatment the little man's days are numbered which is not acceptable. To lose his beautiful smile is really not worth contemplating at the moment.
- Dad

17-July-2001
Aidan is up and at 'em. Dr. Baker is sending Aidan home tomorrow. Apparently he's just too busy for somebody supposedly ill.
Aidan and another boy sharing his room did the rounds of the hospital, selling their home-made (hospital made ?) cupcakes to all and sundry. The enterprising duet raised over $30 which will go towards flowers for the funeral of another boy, also from Ward 3B, who died from pneumonia while in Intensive Care on Monday morning (16/7). The sad fact is that a number of children also die from side-effects of their cancer treatment and other illnesses that the average person may easily brush aside.
- Dad

18-July-2001
Aidan is home. 'nuff said ?
- Dad

Not quite enough said. On the way home, Aidan asked, "Why do I keep having operations on my head?" 
I answered, " Because that's where the bad cells are." 
"When will the bad cells be gone away?"
"I don't know Aidan."
- Mum

19-July-2001
A lot of friction in the house today as Aidan and Caitlin both have to adjust to sharing their space, Mum's time, the television etc.
- Mum

25-July-2001
Trish took Aidan to hospital today to have his stitches removed and returned with the pathology report. An unwelcome guest has returned. It's name is medulloblastoma. Preparation for the stem-cell harvest kicks off tomorrow with a super-dose of chemo (cyclophosphamide). Sheet.
- Dad

28-July-2001
We're no sitting up front on the rollercoaster. The little man returned home from hospital, weary, but cheery. The chemo knocked his appetite, but he was still bubbly enough to play with Caitlin and the twins. Despite a fluctuating high temperature (due to a battered immune system), he's ready for the twins birthday party tomorrow. The "busy ones" clock over their first year next week (Friday 3 August), but an early party was planned to include Aidan, who will most likely be in hospital next weekend.
- Dad

29-July-2001
For something different, Aidan didn't have a soaring temperature and was able to join the twins for their first birthday party. They clock over their first year on 3 August.
Our loungeroom was soon buried under mounds of paper, toys and children. Yeah, verrily, there was much eating, drinking and duplo construction. 
- Dad

Last updated: 26-Feb-2002