AIDAN'S DIARY - MARCH 2002

10 March 2002
Gather round party people, it's time to get down and boogie. 'twas a busy day for the little man, commencing with a morning party session at 2 Much Fun (an indoor playground) with some school friends, followed closely by an afternoon party with family and friends at home. The house was once again awash with generous gifts from wonderful people.
- Dad

11 March 2002
Superman Aidan donned a new Batman persona with the arrival of a Batman costume from Uncle Bob and Aunty Mary. He makes quite an impressive crime fighter.
- Dad

12 March 2002
Batman Aidan performed admirable before his class for news during a show and tell session. Teachers and students alike admired the exhibitionism.
- Dad

13 March 2002
MRI
- Dad

14 March 2002
Why does bad news travel so much faster than good news ? Is there a universal constant for measuring the pace of ill fate ? If not, it could be denoted as the F factor. F for fate, F for ... well ... other terms.
A summary of the MRI scan reached us mid-afternoon. The tumour which reared its ugly head earlier this year has metastised (travelled) and now appears to be in the meninges (brain covering), fourth ventricle (site of the original tumour) and upper spine. It would appear we have reached an event horizon.
When Trish broke the news to Aidan he said, "Oh, no, not again".
- Dad

17 March 2002
Staff from the Total Care Unit at Princess Margaret Hospital (i.e. Aidan's ward), in conjunction with the Lions Club of Booragoon nominated Aidan for a Lions Children of Courage Award in early February. The award was presented today at the Burswood Theatre by Federal MP Graham Edwards and radio host Graham Mabury, with a short welcome speech by Joe Mason, the founder of the courage award. Aidan was one of 70 children to receive an award. The ceremony lasted for about 3 hours, which was a tad long for little people. Lots of special children received the credit due to them.
Guy Magowan, a photographer from The West Australian newspaper, paid us a short visit in the afternoon to take some photographs of Aidan and Caitlin, with the intention of featuring Aidan in a story next week. Trish and Aidan spoke with reporter Peter Trott in a follow up phone interview.
Aidan and other children from the bravery award ceremony featured briefly on the local TV stations for the evening news.
- Dad
 
 

Aidan being interviewed by Channel 10 prior to the ceremony. Click to enlarge.

Aidan and Caitlin kicking back. Click to enlarge.

Joe Mason, founder of the  Lions Children of Courage Award.  Click to enlarge.

Graham Mabury summoning children to the fore. Click to enlarge.

Aidan receiving his award from  Federal MP Graham Edwards. Click to enlarge.

Aidan's Lions Children of Courage Award. Click to enlarge.

18 March 2002
Imagine our surpise when we discovered Aidan and Caitlin made the front page of The West Australian newspaper. When shown the paper this morning, he commented, "Oh, yeah". Not very much phases the young man. The article is currently available online here.
We made a special trip to school for "news" and then continued onto the hospital to discuss with Dr. David Baker a potential treatment option using a chemo drug called Topotecan. 
The drug must be administered intrathecally, that is, directly into the cerebro-spinal fluid surrounding the brain and spinal chord. The intrathecal infusion must be performed by a lumbar puncture (needle to the lower spine) or via an Ommaya reservoir (a catheter inserted into the brain).
If we elect not to proceed with treatment, the tumour will continue to grow and eventually take our little man away from us, a cold sober and very unsettling fact.
We read of another child on the medulloblastoma newsgroup who relapsed, but responded very well to Topotecan, so there is the tiniest of slivers of hope that Aidan will be another responder.
We took the facts home to digest and ponder.
- Dad
 

Caitlin and Aidan featuring in  The West Australian newspaper. (One small mistake, William should be Liam). Click to enlarge.

Caitlin and Aidan's photo featuring in  The West Australian newspaper. Click to enlarge.

19 March 2002
Trish and I arrived at the same conclusion yesterday regarding the path forwards. We would pursue treatment using Topotecan via an Ommaya reservoir in preference to continous lumber punctures which are just too dangerous on a bi-weekly basis.
Spoke with Dr. David Baker to give consent, packed the car for a whirlwind holiday in Walpole (on the southern coast) and waved goodbye to my sister Nicola at the airport; she is relocating to London.
Travelling with little people is always interesting. Provided you allow for regular potty and play time, the trip is usually much smoother. After 7+ hours commuting we wound our way into the Coalmine Beach caravan park to find our tent awaiting us, thanks to Nanna and Granadad, who formed the advance scouting party.
- Dad

20 - 24 March 2002
After nearly 4 years, we returned to some familiar stomping ground in the Walpole-Nornalup National Park, with the Tree Top Walk in the Valley of the Giants, Circular Pool, Conspicuous Cliff and The Knoll. Such visual feasts and others were seen by foot, car and sometimes, canoe.
The kids had a wonderful time seen  We chased the twins from helter to skelter, but beyond that, they were no more mischievous than at home. The "March flies" tried carrying away the children on several occassions, but were swatted to the ground before liftoff.
On a quiet afternoon at Monastery Landing, Trish and I informed Aidan that he was booked for surgery on Monday 25th March to receive an Ommaya reservoir, to help give medicine that would kill the "bad cells". Aidan's response to this bit of news was, "Oh, no, not another operation !" He was munching on a chocolate easter egg at the time, which was far more important than another boring trip to hospital. Priorities you see.
Aidan told us that he would rather be at school with his friends in preference to camping. Given that a boy's will is the wind's will, I placed that statement in context of a tired little man who was actually enjoying camping.
- Dad

25 March 2002
We arrived with Batman Aidan at hospital about 8 am in preparation for blood samples, paper work, discussions, more paper work and a dose of parental anxiety that always builds prior to surgery.
Aidan spent most of the morning in the ward "school" doing reading and craft. 
Dr. Gordon Attiah, the neurosurgeon registrar joined us about noon to discuss the procedure and the potential risks. We bombarded the man with questions.
The morning quickly eroded to afternoon and the clock marked towards 2.30 pm when Aidan's was booked for theatre.
Trish and I escorted Aidan upstairs, waiting briefly in reception, and from there Aidan and I moved to the prep room outside theatre. One of the nurses distracted Aidan with a selection of stickers while the other nurses organised an intra-venous needle and pre-anaesthetic medication. The pre-med acts very quickly, so quickly in fact I caught Aidan in my arms when he flopped forwards like a rag doll.
Leaving theatre, knowing very well what will transpire in your absence is very, very hard. Trish is a veteran at catching Aidan after sedation and is much better at leaving at the appropriate time.
Trish and I awaited news in the Friendship Room just outside theatre, reading and catching up on some rest.
Mr. George Wong, the chief neurosurgeon, passed on the good news regarding successful surgery, about 4 pm. Dr. Gordon Attiah related similar news a short time later. 
Trish and I escorted a sleepy little boy to the ward about 5 pm who recovered in due course with a slight headache.
Dr. David Baker informed us that a CSF sample, taken after surgery, showed medulloblastoma cells roaming freely. While not exactly news, it did keep us focused on the simple fact the today's surgery was only a small piece of the puzzle we must try to solve.
Big Matthew and Big James called into the ward to provide a welcome distraction.
Our thanks to Mr. George Wong, Dr. Gordon Attiah and hospital staff once again.
- Dad

26 March 2002
Aidan was in good health today and should be released home tomorrow after the first dose of Topotecan, which will continue bi-weekly for the next 6 weeks.
- Dad

27 March 2002
First dose of Topotecan administered this morning and thus begins the start of our "monster" hunt within the scope of protocol CCG-P9962. 
Aidan squeezed in a short stop at school late afternoon, before returning home.
So far, as they say, so good.
- Dad

28 March 2002
Back to school for our star pupil.
He was awarded an "Aussie Of The Month" certificate at the afternoon assembly.
- Dad
 
 

Aidan's Aussie of the Month Award - Front. Click to enlarge.

Aidan's Aussie of the Month Award - Back. Click to enlarge.

30 March 2002
A quickish trip for Aidan to see Dr. Baker for the second dose of Topotecan.
While Aidan does lie still during the injection (into the Ommaya reservoir) he was not real impressed. We managed to distract the young man with songs from Oomba Baroomba, one of his favourite tapes featuring songs from Play School.
He rested for another hour catching up on an old episode of Brum.
- Dad

Last updated: 20-Apr-2002