AIDAN'S DIARY - JULY 2002

5 July 2002
This evening was the first in over two years in which Aidan didn't require any form of medication. He has a week break until the next cycle of Etoposide (VP-16), if we elect to proceed with treatment.
Today was also the first day in which Aidan helped Liam and Evan from their cots in the early hours of the morning. The Boys soon found their way into the crockery cupboard and proceeded to empty the contents. The outcome was not as disasterous as it sounds, but Aidan is now under strict instructions to ask permission before extraditing his brothers in the morning.
- Dad

7 July 2002
The Etoposide (VP-16) has been doing it's thing with Aidan's hair, which had been falling out slowly, until Aidan helped things along by grappling loose handfuls. He is now sporting a rather unique tonsure, over the top of his head, rather than the crown.
Our tribe spent the morning riding about Castledare on miniature trains. Toot, toot !
- Dad
 

Caitlin, Trish, Liam, Evan and Aidan. Click to enlarge.

Grandma, Paul and Carl (middle carriage). Click to enlarge.

8 July 2002
Spent some more time with Grandad Michael, calling upon some furry friends at the Caversham Wildlife Park (thankyou Pat) and later a stroll along the reclaimed railway track at John Forrest National Park to the suitably frothy Hovea waterfall; the winter rains have done it justice.
- Dad
 

Aidan and Caitlin with a wallaby at Caversham. Click to enlarge.

Aidan and Caitlin at Hovea Falls. Click to enlarge.

9/10 July 2002
Farewelled Grandad Michael at the airport this afternoon. His time in our company was much too short.
We departed late afternoon for Mandurah to spend some time with Phil and Nerylie, long time friends of Trish's (and mine through marriage) who invited us to their Mandurah retreat some time ago. It was moderated bedlam, with the twins handling the change of scenery much better than was expected. They make excellent passengers, pointing out the scenery from the back seats, declaring, "See, see, whoa". They also sung a few driving tunes to their sleeping siblings (Aidan and Caitlin) and their tired parents. Aidan and Caitlin enjoy "a camping", even if it's at somebody else's house.
A good storm has been crossing the West Coast these past few days and summoned some wild spray from the briny blue for our beachside visit. Most of the time was spent under cover and indoors.
But, it was still a pleasant change of scenery. Thankyou Waddys.
- Dad
 
 

Dawesville Cut.  Click to enlarge.

Waddy and Telcik menagerie. Click to enlarge.

11 July 2002
Aidan, Cait, Trish and I boarded the Wizards Express at Fremantle, for a bewitched train ride to Pinjarra and back again. The railcars were packed with children donning their finest wizarding or witching robes. There were games to play and noise to be made, rather a lot of noise in fact. Too few staff and too few attentive parents meant kids were free to stick most of their bodies out of the windows. I'm rather surprised nobody was beheaded. The 6+ hour trek, including a luncheon stopover at Pinjarra to sight a "troll" and "dragon" (hmmm), was a bit long for Aidan and Cait, and presumably lots of other kids too. It was a good distraction, but serious thought would be required before attempting the journey again.
Tomorrow we shall speak of many things with Dr. Baker (The Wizard of Oz). A little research in our "spare" time has uncovered possibile clinical trials, but the reality of pursuing them may be less than savoury.
- Dad

12 July 2002
Caitlin joined us for the hospital visit and bounced about in her usual tiggerish manner, which was a welcome distraction from the purpose of our visit. 
A routine "finger prick" to draw a blood sample was followed by a longer discussion of the applicability of experimental clinical trials (aka. Phase I), many of which work favourably upon lab rats, but as for people, well now, that's another story. 
The more important items on the agenda were a research paper on the use of intrathecal Etoposide (i.e. via the Ommaya reservoir) and the addition of oral cis-retinoic acid (vitamin A) to the 21 day Etoposide cycle, suggested by Dr. Jonathan Finlay from the New York University School of Medicine; Dr. Finlay is one of the pioneers of pediatric cancer treatment. 
Aidan was given a (clinical) green light by Dr. Baker, so we opted to place Aidan on another cycle of Etoposide with the introduction of cis-retinoic acid.
What better way to round off the day than a CSF sample which will be tested for free-floating cancer cells to give an indication of the effectiveness of the chemo. Aidan is "way down" the list of people on the MRI list, but we will pursue a CT scan at the end of the current cycle.
- Dad

17 July 2002
The CSF sample (from 12 July) test results came back clear, which indicates the Etoposide is having some effect upon the cancer cells. However, the Topotecan yielded similar results in the first few weeks but the outcome was less than we had hoped.
We shall wait and see what light shines through yonder window.
- Dad

18 July 2002
Aidan was cast from the audience as a "hunter" in Prompt Corner's production of Prokofiev's Peter and the Wolf. I do believe he was rather chuffed donning the mantle of a bold hunter, questing after the meddlesome wolf.
- Dad

20 July 2002
Portrait time.
- Dad

23 July 2002
The oral cis-retinoic acid Aidan was taking to supplement the Etoposide had the unwanted (yet predicted) side effect of drying his skin. His eczma was exacerbated by the acid. Trish and Dr. Baker opted to take a break until the next cycle of Etoposide.
- Dad

25 July 2002
Aidan joined his good buddy Nat for a portrait photo session.
- Dad

Nat and Aidan.
Click to enlarge.

26 July 2002
Aidan diverted his classroom's regular learning for a brief TaeKwon-Do demonstration with the assistance of Brodie, a fellow pupil. He instructed all the other children to sit at a safe distance and then proceeded to show some fundamental punching and kicking techniques. This just goes to show, once again, that children are "always" watching and learning. Aidan has been to enough TaeKwon-Do classes to know what's what and how to do it.
- Dad

27 July 2002
Aidan and Caitlin were up early this morning (as per usual) and spent some time scheming in the kitchen with hushed voices and clanking crockery. The outcome was an unexpected visit to our bedside with toast (buttered bread). They were rather pleased with their efforts; Aidan was positively beaming at the accomplishment.
We made our way to Bells Estate in Caversham for a Christmas in July luncheon with the local chapter of Camp Quality. A good many familiar faces kept us company, some with hair, some without. As could be expected, Santa made an early visit to the boys and girls, showering them with toffees and gifts. Santa and the food were a hit. Liam and Evan joined us for the outing and were truly fascinated by the buffet-style lunch; they kept making their way back to reload their gullets. Just think of pelicans.
- Dad

28 July 2002
The day started much earlier than anticipated, thanks to Aidan and Caitlin extracting Evan from hit cot in the pre-dawn hours. Evan was very pleased to be released at such an early hour and was tearing about the kitchen right up until the point he was carted back to his cot. Several weeks have apparently dulled Aidan and Caitlin's memory regarding who should and should not be up when the roosters are still asleep. Liam was still contained (thankfully), but the other three were sent back to the land of nod until a more sensible time.
When the day resumed, we hosted a Bob The Builder birthday party to celebrade Liam and Evan's second anniversary (a week early). While the boys are still a smidge too young to appreciate gift-giving per se, they were quite keen on birthday cake and anything else that would fit into their mouths. My uncle Colin referred to Evan (or maybe it was Liam?) as a "mouth with a mission". True, true.
- Dad

Last updated: 16-Apr-2003