Maria "on display"

The 3rd International Brain Tumour Awareness Week will be held between Sunday 1 November and Saturday 7 November, 2009. There will be a number of activities held around the country to increase awareness about brain tumours.

While Canberra is not having any specific events, it will have a display running at the Canberra Hospital for the week in question. To help my friends at BTAA who wanted the display to have a local and personal touch, I contributed a piece on Maria and our family's journey. If you happen to be in the hospital next week (hopefully for nothing serious), keep a look out for it in the foyer area. For those of you who won't be passing through, I've attached a copy of it here).

Fri 30-Oct-09 (Maria's increased independence, bandanna day, blessings)

We got the kids to school early so we could all buy bandannas to support CANTEEN (The Australian Organisation for Young People Living With Cancer). As you can see from the photo below, Gabi's was pink, Maria's the Australian flag, and Ben's a cool design. Mine is a camouflage green.

I dropped Maria off at the hospital after returning some equipment. Praise God we never had to use any of it! Maria's day was to then take the following route:

• Blood test in preparation for next cycle of chemotherapy next week.
• Walk (40mins at her pace) to Woden Shopping Centre.
• A well-deserved iced chocolate at Gloria Jeans Cafe.
• Bus it home.
• Navigate the walk home from the bus stop (15mins by this time as she was completely exhausted).

It may not seem like much to many, but when you consider all things, for us it is another huge step towards greater independence. There is no doubting Maria's tenacity and courage!

I had a string of meetings at work. This was a full (5-day) week as next week I won't be in on Monday because of an appointment with Maria's Oncologist.

It was also a day of a couple of unexpected blessings. The first was an email at work from someone we churched with in the past. Every now and then I am amazed when people come out of the woodwork and say they follow this blog closely. Although they said following our journey had blessed them, their correspondence and encouragement blessed us.

This evening we received an email from a friend who we had sporadic contact with since we headed off overseas. Apparently he and his family have been monitoring our blog for some time, which he claims gave him (in addition to discovering some people close to him had cancer) the motivation to embark on a fundraiser involving a 1,400km bike ride (Sydney to Sunshine Coast). The fundraiser is called "Tour de Cure". Simon is aiming to raise $10,000. As you’ll see in his letter (I saved it at http://www.scribd.com/doc/21884165/Intro-Letter-Simon-McMenamie for viewing),“brain cancer” is one of the causes his fundraising will go towards. I wanted to share this with you as although he says he has felt inspired by us, he has in fact inspired us! If you have a few spare dollars over the coming months, please keep Simon in mind.

Sun 25-Oct-09 (8 month survivor!!!)

It is now just after midnight on the 25th. That means it is now 8 months since Maria's initial surgery!

There have been a few occasions during this journey when the indications were that Maria wouldn't be with us today. We have God to thank for bringing us this far down the track with things currently the best they've been since Maria's diagnosis. We are certainly not oblivious to the ongoing challenge we face and for this reason we count every day as a blessing and will continue to do so. Actually, shouldn't we all have this mindset anyway, regardless of our circumstances?

Fri 23-Oct-09 (Neurologist's appt)

This meeting went well. As previously mentioned, Maria was on a minimum four month waiting list. When we saw the Neurologist we said how amazing it was that Maria was seen so quickly. Unbeknown to us, Maria's neurosurgeon had "pushed hard" behind the scenes to have Maria seen.

She underwent some rigorous testing and her medications were discussed at length. The biggest downside to the meeting was that it was made clear Maria would not be allowed to drive for the foreseeable future. That said, she is appreciative of the risks involved and really just wanted confirmation of the above. I will continue to take on chauffeuring duties when not at work. With buses, taxis and friends available from time-to-time, there won't be any problems managing.

Thu 22-Oct-09 (first working week, Ben's dehydration)

My first work week (4 x 5hr days) after nearly 8 months is over and I survived! I'll work every day next week to make up for the following week when I'll only be able to work three days (i.e. Monday = oncologist appt with Maria; and Friday = Gabi's sports carnival, after which I'll head to Sydney for a weekend conference that commences that evening).

It took three days to get me online (still a few glitches that need to be ironed out). During this period I read hard copy documents to get across some of the work of the area I'm attached to. However, I really started to get into things today when I was "up and running" in the IT sense.

Albeit the building and many faces are familiar, I feel like a fish out of water. While chatting with Maria about it last night, it dawned one me that it is the first time in my 21 year work career that I've taken up a position I have not sought/applied for/or taken on my terms. I'm sure I'll feel better once I get a little more familiar with the work. Anyway, the section is a nice bunch so that makes the transition a lot easier.

On the topic of little quirky things I always wore a suit in Israel for work but no tie, following local dress code (which I favoured). I tried the same approach on Monday, but as everyone else was in ties I strangely felt under-dressed. That said, I forgot what a pain ties are after more than two years without one. At least I remembered how to tie it!

It was a warm day, peaking around 26 degrees Celsius (79 Fahrenheit). Although it was warmer yesterday, it felt a lot hotter today. When I collected the kids Ben complained that he didn't feel quite right and looked a little flushed. I gave him a hydration ice block and water when we got home, helping to pick him up, but by bedtime was suffering from headaches. I treated that before bed and am prayerful that his night won't be a rough one.

Maria has been asking us to wake her in the morning so she can prepare our lunches. She has also prepared dinner the last couple of nights, giving me a break. It has been a real blessing as it lightens my load.

Maria still struggles with significant fatigue and "chemo brain" (i.e. significant memory loss and confusion at times, associated also with the fatigue). She also has suffered from swelling around her ankles over the last couple of weeks, which is being monitored and will be checked by the Neurologist tomorrow. There are still bouts of wakefulness most nights. We are hoping to start tapering her steroid dose down (probably tomorrow) to try and rid her from this necessary evil. As her current dose is quite small (2mg), we are not stressed if it doesn't work out, but anything less would be a bonus.

Mon 19-Oct-09 (first day @ work, Maria alone, Neurologist appt)

It was strange to be leaving Maria alone today. Fortunately her parents came through for a visit during the day, which gave her company for a couple of hours.

After dropping the kids, I got into work a little earlier than planned and settled in slowly. I should be online (email and phone) when I get into the office tomorrow morning.

I met my work colleague for the first time today. It appears like a busy work area with some challenges coming up that need to be progressed.

Overall the day went as smoothly as it could have for us all. Thanks for the prayer. Although there have been offers of assistance for Maria, she is determined to be a little more independent and to this extent will walk down to the bus tomorrow to get to her doctor's appointment.

Maria received a call from the office of the Neurologist at the hospital to arrange an appointment for Friday. It was a huge blessing as only last week we received a letter advising there was a minimum four (4) month wait to see him. To compound the issue, we contacted a private Neurologist who was also recommended by the Neurosurgeon, only to discover that for health reasons he was not seeing any new patients for the remainder of this year. The additional blessing is that the appointment is that it falls on the day I don't work (i.e. Friday).

I brought some "light reading" home, which I'll get into after finalising this entry. It hasn't taken me long, has it?! Anyway, I find sleep to be overrated!

Sun 18-Oct-09 (a day out)

Although it was a slow start to the morning, we headed out to the Australian Federal Police 30th anniversary Open Day. It was quite warm and the kids enjoyed all the exhibits. Ben especially enjoyed watching the Operational Response Team repel from a helicopter in a scenario. In fact, Ben enjoyed all the weaponry. They had fun at the mock crime scene as well as sitting on the police bikes and turning on the sirens.

Sat 17-Oct-09 (Gabi's party)

Gabi had a birthday party with a few school friends this afternoon. As it has rained all week we were preparing for the worst. However, we were blessed with great weather for a lot of outdoor games. I am feeling the fatigue as I type! It started to rain about an hour ago so we are grateful for an answer to prayer.

The kids were all lovely and so well mannered. They seemed to have a great time. I'm hoping I kept them active enough that they would have gone off to sleep early, giving their parents/carers a rest this evening.

Luckily the party started at 2:00pm. This gave us the morning to prepare. I spent quite a bit of that time cleaning the floors as best I could with all the work we've had done lately. The downside was that Gabi started complaining last night of a sore stomach and nerves. This followed into this morning. I had her as busy as possible to take her mind off things, which for the main worked.

As I left the camera in Maria's room, I'll wait until tomorrow to upload some photos and post it to this entry as an update.

It was a huge day for Maria. She spent most of her time preparing both of Gabi's cakes (one in a theme, the other a number - in this case '7') and then chatting with a couple of mums who stayed around while I entertained the kids. As Maria didn't get any sleep, she was struggling with headache when she went off to bed (about an hour ago).

Update...here are photos as promised.

Return to work next week

It's a real blessing that Maria is probably the best she's been since February and is able to self-manage a lot more. For this reason I will be returning to work on a part-time basis next Monday (the 19th). I'll work 20 hours per week (half-days from Mon-Thu).

Given that I have been caring for Maria since her diagnosis, I am a little hesitant returning to paid work after what will by then be a 8 month absence (actually, a week short of it).

I will be attached to the Staffing/Human Resources area of my organisation. There are a number of discreet projects that I can undertake. These will be discussed with me further when I start. I appreciate their ongoing flexibility and look forward to contributing what I can.

Sun 11-Oct-09 (visit, preparation for return to school)

In the morning we had a visit from friends who were travelling enroute to stay with Effie and her family. They were our first visitors to the new (but non-operational) kitchen. I still had my coffee machine and kettle operating in another room, so everyone was happy they could fuel up on coffee, tea and hot chocolates. The kids managed to spend a lot of time inside the skip bin outside the house. Ben also pulled out quite a bit of broken timber and started to construct a yet-to-be finalised project with some help from his new friends.

In the afternoon I went to our shed and pulled out a microwave oven that has been in its box for the last 8 years (we've had it for a lot longer, but couldn't recall when we purchased it). After cleaning it and giving it a dry run, it did the job in heating up our dinner.

Ben and I also got to mow our lawn (well, mostly weeds) for the first time since returning to Australia. Our mower started on its first go. It needed to be thinned out prior to Gabi's birthday party (next weekend) at which she'll have a handful of school friends. Gabi had been taking a lot of photos and video during the afternoon of the mowing and some (amusing) commentary, which filled the memory card. Unfortunately I thought I had transferred them over to the laptop and it wasn't until now that I discovered that I've deleted them. I am quite cross with myself.

After putting the kids to bed, I had the iron out for Ben's school shirt. The kids return to school in the morning in their new summer uniforms. It will be interesting to see how they cope given the weather hasn't really taken off and there is anticipated isolated rain throughout the week.

Sat 10-Oct-09 (return home to a new kitchen - nearly)

After bidding everyone farewell we headed off, but stopped when reaching town five minutes later to have lunch at a really lovely rustic cafe.

We arrived home with great anticipation of what we were to find. The kitchen is in place and looks great, but it is incomplete. We have no plumbing or power and there are some final building work to fit some skirtings, cornices and a new house front door. In other words, it is not functional yet.

Maria went off for a sleep, while Gabi and I spent two hours cleaning, with a contribution from Ben towards the end. We had jaffles (toasted sandwiches) for dinner before it got dark as we knew it would be very dark (the connecting playroom and dining room are both also without lighting at present).

We are looking forward to Monday afternoon, when hopefully everything will be finished. I will put together a brief "before and after" photo collage at some stage.

Fri 9-Oct-09 (Gabi turns 7!!!)

Gabi was up before 6:30am, naturally very excited that she is now officially a seven year-old. After I cooked her our mandatory family pancake breakfast for special occasions, she opened her presents then headed out with Ben to collect eggs and feed the animals. Ben made her a lovely card (neither Maria nor I had any input) that, for once, didn't include a drawing of a Star Wars character or a death scene.

Through the morning (and later in the day as well) she received phone calls from loved ones, including from Effie to let us know they were returning in the afternoon (a day early) because of poor weather.

Gabi enjoyed the return of her cousins as it meant she could hang out with her big cousin Maggie. Mags is very patient with Gabi and the two play well together. It also meant that Ben and Tom could get busy together, going out to combat ants nests and do some archery.

In the evening Gabi and Ben had McDonalds for their dinner (their choice), while the rest of us enjoyed a delicious Thai meal. We all struggled with cake by the end of the evening (a delicious Mille-feuilles baked by a local French patisserie Chef).

Wed 7-Oct-09 (Snow!)

You'd be forgiven if you thought we may have jumped on a plane and headed to the northern hemisphere to hang out with our dear friends there. As you read on it will make more sense.

This is Cooma on an unusual Spring day. It started around 7am when the kids woke me very excitedly to tell me it was snowing. Like Maria (who they's already shared their news with), I was surprised they would pull such a prank until I looked outside the window!

It was falling lightly, but over time was creating a light blanket of snow over the property and in the area. As we got dressed to go out and investigate a little further, the snow bucketed down as you can see from the photos. We all made snow angels and headed inside, very wet.

By late morning the snow stopped. We drove into town (no sign of snow, although only 5-10 mins away) to do some grocery shopping and we took the kids to McDonalds for a treat. The woman who served us said that she had started at 6am and she and it was snowing then. By the time we got home the snow was melting and within a couple of hours you wouldn't have believed that it had snowed at all.

In the late afternoon a neighbour of Effie's dropped in (who we know well) to see Maria. After Monique's visit a Kookaburra landed in a nearby tree while I was staring out a window. I was able to get a few shots of the "cutey".

I drove up to Canberra after dinner to meet my dear mate Paul, who is doing the electrical work for our renovations. As the heating has been off all day and it has also been very cold here, the house was a chilly 11 degrees! It's going to take a while yet before the house is warm throughout.

I'll be here to do a few things in the morning, hopefully returning to Cooma in the afternoon.

Tue 6-Oct-09 (Maria starts 4th cycle of chemo)

Maria's blood test from earlier in the day was fine. She commenced this—her 4th—cycle of chemo earlier this evening.

Mon 5-Sep-09 (public holiday, travel to Cooma)

We packed, had lunch and drove to Maria's sister's property in Cooma, which is exactly 110km (1hr 15mins) drive. Effie and her family are away this week, so the timing is perfect while the demolition takes place at our home.

We had torrential rain on the property (the most I can recall from any visit there). In fact Gabi and I got caught up in it while feeding the chicken, ducks, guinea foul and sheep with their cute new lambs.

I know there are predictions for rain throughout the week in Canberra, but am not sure about Cooma (glad the work being done at our place is indoors). I did hear briefly that a cold front from Tasmania may bring some snow to the ranges tomorrow, perhaps down to 800m or less. If this is the case, the kids may have a little fun.

I headed off after dinner through some very heavy rain to make the trip back home. Fortunately the rain dissipated on the other side of Cooma, so the trip was a good one.

Although I didn't want to leave Maria alone with the kids, I had to return to finalise the clearing and cover furniture and other items in a room that will be dust-ridden after they cut out half of the brick wall. It was also much easier to do this now as the builders arrive in a few hours (@ 7:30am). I'm hoping in my discussions with the builders tomorrow that I can minimise my trips to/from Cooma over the week (especially on Friday as it's Gabi's birthday).

In the morning a friend of Effie's will take Maria to town for an urgent blood test requested by her Oncologist so he can confirm the commencement of her next (4th) cycle of chemotherapy—at this stage to commence tomorrow evening.

The ICC Champions Trophy (cricket) 'Final' in South Africa between Australia and New Zealand got under way a little while ago. I'll be keeping an eye on it during the night in my wakeful times. Go Aussies!

Weekend 3 & 4-Oct-09 (kitchen preparations, a visit)

Most of the weekend was spent moving everything out of the kitchen. In some ways it was the perfect time to do it as the weather was miserable throughout. We were blessed by our ear friend Janelle visiting from the Blue Mountains. She came over on both days and helped out with the moving of things as well as spending quite a bit of time playing with Gabi, who just loved having her over. Thanks Janelle for the help, otherwise I would have really been struggling to get sorted!

The four of us watched the NRL Grand Final last night. Ben was barracking for the Melbourne Storm, while Maria, Gabi and I were going for the Parramatta Eels. Ben's team got up at the end of the day.

Our website

I've set up a website, which is really a link to this blog. The link is:
http://www.caringbridge.org/visit/mariatroy

The website is provided free of charge by "CaringBridge". They kindly help people, like us, experiencing a life-changing event to keep loved ones informed. The site also enables family and friends to give support through guestbook messages.

I'm not establishing the site for the purpose of receiving guestbook messages (however, we won't reject any), but rather to put our journey out to a wider audience across the web.

Fri 2-Oct-09 (dinner out, sleepover)

We spent some time in one of our local shopping centres/malls, partly so the kids could watch the 'Kung Fu Panda' show, which was really interactive. Ben wasn't keen to watch it, but got into it. Gabi managed to lose her 8th tooth, only a few days after her previous one. Three teeth gone in a week may send the tooth fairy broke!

Maria had her long afternoon sleep while the kids played beautifully. While I was catching up on some emails a couple of parrots landed outside the window on one of our small trees and started helping themselves to a leafy afternoon tea. As I happened to have the camera on the desk I was able to take a couple of shots, which I've shared below.

This evening Maria and I went out to dinner with a group of neighbours. We dropped the kids off to our dear friends (who lived down the road from the restaurant). They are going to have a sleepover. We had a really nice time at the restaurant with plenty of food (could have probably done without that!).We got home around 9:45pm and although Maria was exhausted, she had enough energy to do a bible study together before she was ready to sleep. I thought I'd get a quick entry in and catch up on some further email corro before hitting the sack myself.

Thu 1-Oct-09 (Oncologist's appointment)

Where is the year going? It's hard to imagine that Christmas is less than three months away.

Today we headed off early with the kids to the hospital. Maria had a blood test prior to her appointment with the Oncologist. We then had quite a wait to see him—the kids were so patient.

When we finally saw the Oncologist, he was very happy to see how Maria appears. The blood test result was fine and she should be able to commence her fourth cycle of chemo next week, pending another blood test on Tuesday. Maria will have this done in Cooma as we'll be there for the week, with me commuting while our new kitchen is built. We went through the usual routine of collecting the chemo from the oncology pharmacy, which is conveniently just up the hall. We took the kids to the hospital cafe for a treat, while I booked in Maria's next MRI for the 11-Dec, a week before Maria's appointment with the Neurosurgeon.

We were out for three and a half hours in total. It was a quiet afternoon, allowing Maria to have her long afternoon sleep. This gave me a chance to fold loads of washing I hadn't got around to doing as well as preparing dinner.

Maria had some one-on-one play time with Gabi, who really thrives when having that special time with mummy. Ben and I both started to experience tummy problems in the afternoon. I feel so sorry for Ben as he has a rough trot over the last couple of weeks with the flu, sinus problems, a middle-ear infection and now this. It is a few minutes before midnight and fortunately he hasn't been out to the bathroom since going to bed at around 8pm.

Wed 30-Sep-09 (Floriade)

The weather had improved enough for us to go and enjoy Floriade, which for our overseas family and friends is the biggest flower festival in Australia, put on free of charge, to celebrate the season of Spring. Each year tulips and other flowers are planted to form pictures/designs according to the theme of the year. This year's was, "Mind, body and soul". While part of the theme is certainly not for us in the manner it is presented, we enjoyed seeing God's creation and beauty on display. I downloaded 85 photos at the end of the day, of which I had taken no more than 10 as Gabi was the prolific photographer. I've included a few shots below (mostly from Gabi) in a video presentation. The best way to appreciate the designs is up from high [for example, in the Ferris Wheel pictured in the background of some shots]. However, as none of us were up to it at the time, you'll just have to enjoy the colours from ground zero.