AIDAN'S DIARY - OCTOBER 2002

2 October 2002
Dr. Baker drew a CSF sample from Aidan's Ommaya reservoir mid-afternoon to get a better idea of what, where, how and why. 
Shortly after Aidan returned to his bed, he "blacked out" and was unable to respond to voice or touch.
The episode lasted for about 10 minutes after which he snapped back to consciousness. Trish was with him at the time and was quite shaken by the ordeal.
The CSF results came back "clear", leaving a question mark over our little man.
It's really hard to know the cause of the blackout, but we can't rule out the possibility of a tumour growing on the brain stem.
We discussed organising a private MRI with Dr. Baker and will see what comes. It's a long sordid tale.
If you're a child living in Perth with a recurrent brain tumour, you can forget about regular MRIs because the only children's hospital in the state doesn't have the equipment and paediatric anaethatists are rare as hens teeth. Thankyou federal government.
If you're a wealthy sports star with a minor injury, let's just say a footballer with a sprained ankle for instance, you can have an MRI in a heartbeat. Go figure.
- Dad

3 October 2002
Aidan's temperature climbed to around 40 degrees between 4 and 8 am. Not good. While blood samples show his immume system is fighting an infection, it's not clear where the infection is lurking. 
- Dad

4 October 2002
Aidan was still warm in the morning, but was handed an eagerly accepted leave pass. 
When I collected him from the hospital, he clung to my front, nestled his head into my neck and remained there until we reached the car. 'twas quite wonderful. Just imagine a Koala bear. 
- Dad

6 October 2002
Caitlin usually misses out on hospital trips. Today was her day. After poking some paper in her eye, it was time for a visit to emergency for a looksy. So far, so good.
Aidan's temperature and temperament were up and down.
He snuggled up to me and fell asleep while I was typing this entry.
- Dad

9 October 2002
Aidan was whisked away to the annual Camp Quality "main camp" in Serpentine early this morning by the voluntary angels who donate their time to The Little People. Aidan's helper, Linda, was on hand to meet, greet and pack.
The camp runs between Monday 7 October and Friday 11 October. We opted for less "time away", hence the departure today. The kids will be escorted back to Perth by the Veterans Car Club on Friday afternoon. 
Trish and I spoke with Dr. Baker regarding upcoming treatment options and are set to pursue a route of low-dose temozolomide over a longer period. The current regime with 3 weekly cycles of Etoposide may (or may not) be keeping the tumour at bay, but is also creating unwanted toxicity while whacking cells.
More on this as we work out a protocol.
We're still attempting to organise an MRI. The private sector appears reluctant to scan an child who is sedated, due to potential complications ... and they are unable to provide anaesthetics in lieu of sedation. An awkward situation, but we'll keep at it.
- Dad
 

Jake, Harrison and Aidan. Click to enlarge.	Away they go ... Click to enlarge.
Ward 3B reception. A familiar vista. Click to enlarge.	The doors to Ward 3B. Click to enlarge.

11 October 2002
The kids kicked of their trip on Wednesday 9 October a stop over at Perth Zoo to make friends will all creatures great and small. Their arrival was met with a grandiose fair with all things fair.
Thursday 10 October went up, or at least the kids did, when they went flying in a variety of flying machines. Thursday night was a magical feast with a Harry Potter theme banquet. All peoples, big and small, donned their favourite dark cape, broken glasses and waved wands in welcome during the feast and at the ensuing disco.
The Vintage Car Club escorted little people safely back to McCallum Park, Perth in a range of automobiles from yesteryear.
We were told by the "helpers" that Aidan partied "hard". Thatta boy!
Many photos pending.
- Dad

13 October 2002
With the exception  of Caitlin's unexpected morning trip to the doctor for things that make one say "Owww", 'twas a splendid day.
- Dad

16 October 2002
Trish and Aidan caught up with Dr. Baker to discuss blood counts and "the next phase" with low dose Temozolomide. Several presentations at a recent International Society of Paediatric Oncology (SIOP) conference in Porto, Portugal, discussed the use of low dose Temozolomide. Dr. Baker had attended the conference, hence our joint decision.
Unfortunately, Aidan is not eligible for any of the clinical trials which include Temozolomide due to his condition. Chickens, eggs and catching at least 22 here.
The fallback is to continue with Etoposide, but this time cycling with one week on, one week off.
Toxicity is always an issue with these chemicals. Given Aidan currently has a low red cell count, most likely due to suppressed bone marrow, this round may take a greater toll than it should.
- Dad

18 October 2002
H A P P Y  B I R T H D A Y  T O  M E, T O  M E.
Aidan and Caitlin were at the ready to lift my eyelids in the morning hours and present meticulously hand-crafted cards. Inclement decrepetude comes in many guises.
- Dad

19 October 2002
A handful of rowdy scalies (mates) joined us for a BBQ'd cake and frosty mug of pivo to wash away another year. The sunset was captivating.
- Dad
 

Backyard sunset. Click to enlarge.

And now ... the cake. Click to enlarge.

20 October 2002
We joined the quality campers of Camp Quality at Joondalup TAFE for a crafty fair in which little people were able to make stuff and do things. Aidan and Caitlin made much and did lots. The Boys (Liam and Evan) were up, down, over, under and all around. Methinks they also enjoyed the outing. Budding childcare students volunteered their time to assist the young'uns with their endeavours. Aidan's helper from the last camp, Linda and her husband, also volunteered their services, which The Boys proved, were very much in demand.
- Dad
 

Aidan and Caitlin getting crafty. Click to enlarge.

Joondalup TAFE. Our clan is centre-left. Click to enlarge.

21 October 2002
Here's to Much Ado About Something. An MRI sort of something. Dr. Baker has organised a private MRI for Aidan next Wednesday, 30 October 2002.
Unfortunately, the private operators are petrified of performing an MRI with a child under sedation, so it must be that Aidan will need to put on his brave face (again) and listen to the clunks, thunks and bumps of an MRI. machine doing its thang.
Trish pointed out that Aidan was scared silly of a previous bone scan, but lay perfectly still during the proceedings. 
We're hoping he buys in on the newest deal.
- Dad

24 October 2002
Book Day ... in which students and teachers don garb resembling their favourite character.
Aidan has this thing for wizardry and Caitlin enjoys the privilege of rank.
- Dad

30 October 2002
Today was another big day for Aidan with his first MRI without a general anaesthetic (aka. sleep medicine). 
He was mildly petrified of the whole affair, sitting quietly in the car for the trip to PMH to insert a drip, quietly fighting back tears during the doctor's successive failures inserting a needle into his hand and then arm, and a short while later in the waiting room at the private MRI clinic. 
Trish escorted him into the machine chamber and sat with him during the clunkety, bang session. Ear plugs and partial deafness helped to keep the noise at bay.
Aidan emerged very quiet indeed and remained that way until we reached the toy section of a department store for a much promised bribe. It was a bribe well earned and it took some time to select the right item, poring over every which knick knack. He finally chose a Lego airplane. 
We returned to the hospital shortly after noon to obtain a CSF sample from Aidan's Omayya reservoir during which he showcased his stoicism. The procedure concluded without drama ... no blackouts this time.
News of the MRI travelled at near light speed, reaching us just after the CSF sampling. The private sector doesn't mess around when it comes to getting reports out the door; we were too accustomed to the graceful pace of the public sector. We could have hoped and prayed for good news, or even bearable news, but it just wasn't meant to be.
The radiographer's report indicated massive growth of all tumours in the left and right caudate and cerebellum and noted pressure on the brain stem. We reviewed the scans the with Dr. Baker and while none of us are qualified radiographers, the disease progression was plain for all too see.
Dr. Baker was puzzled and them some by the discrepancy between Aidan's MRI result and his physical appearance and behaviour; there was really no correlation. The MRI suggested he should be ataxic (shaky) and suffereing mild to severe heacaches. Not the case. However, the scan did show the tumours to be almost large enough to disrupt the flow of CSF, bringing with it severe headaches, vomiting, ataxia etc. It's only a matter of time. We have cancelled the Etoposide (VP-16) as it appears to be ineffective; the cancer is having a field day with the stuff.
Next time, I'll be ordering a zesty beverage to wash away the flavour of another cold turdburger. 
Where to from here ? We don't know.
- Dad

Last updated: 25-Nov-2002