Cycle 2, Day minus 2

Today we got our very detailed, very specific medical education from our liaison nurse. She was off sick last week, but it is great that we have now met her. She is basically Joshua's 'case manager' and so is the one with the big picture and our primary port of call for questions.

So in short, Joshua is planned for 5 rounds of chemo. The first 'mild' one took place last week. The second round starts properly on Wednesday. However, today was spent pumping him full of the 'accompanying' drug to ensure he didn't react badly to it. The good news is that he didn't. Tomorrow will be various tests (ultrasound/x-ray/bloods) which should hopefully be a fairly relaxed and short day before we go in for the real stuff.

Each of the remaining four rounds is a 21-day cycle, with 5-7 days of chemo as an inpatient and then the remainder of each cycle being 'recovery time' while his body (and particularly his blood) recovers from the chemo. Each round will pretty much wipe out his immune system, so we have been told to expect that he will need to be admitted to deal with any infections arising in the 'off periods'.

So a major prayer point (other than his body and mind coping well with the chemo itself) is that we would be able to keep him free of infection as much as possible during this time. We have four fridge magnets with all the warning signs we have to look out for, so we are well primed. In the event of any of the signs, we either call an ambulance or go to ED/ER/A&E and get the fast-tracked gold service 👦 Hopefully we won't need to take advantage of that too often! We have also got a box stocked with all the meds, counter-meds and just-in-case meds for the coming period. I have downloaded an app...


Thanks to all those who are praying and have supported us practically. I am still trying to process and work out everything, but will (time/space/energy/headspace permitting) be in touch with people in due course.

The other thing to pray for, while I think about it, is that despite my best efforts Joshua has picked up 'the cold' (as has Libby) which is making him feel more miserable than is entirely necessary. It would be really nice if this could clear up really quickly so he has all the resources necessary to keep on the path. (The upside of the cold though, was that he had to be isolated for today's treatment, which meant we got a nice room all to ourselves 👦)


There is lots more I would like to write, but we have to be back at the hospital at 8:00 tomorrow, so I should probably make tracks. I will write more when a quieter time comes (ha!) At least now, thanks to generous former-strangers, we now have our own wheels, so we can be a bit more independent with getting to the hospital.

Update (Sunday 20th)

Here is a picture that warms our cockles 👦

After completing his first (short, gentle) round of chemo, Joshua was released from hospital this afternoon, so we have spent a nice evening as a family in our new home (from home). He has to go back at 8.30 tomorrow morning as an outpatient to start his next cycle, but we are enjoying the time we have together for now. 

He is doing very well all things considered. Some of the drugs have impacted his moods a bit, and his appetite (in both directions) but overall he is doing pretty well. 

Thank you for all the responses to my slightly desperate previous post - I may have to set up a database to catalogue them all and make sure we don't drown under the volume of generously provided food 👦To update:

i) we have a car and car seat from tomorrow for 5 weeks, and the expectation of a further vehicle after that time (in passing, I have been very impressed with the Brisbane public transport system, which includes 'busways' - which for those who don't have them are like railways for buses, so there is no congestion. Children also travel free on all public transport (i.e. trains, buses, ferries, trams) at weekends. This afternoon the three kids and I travelled from where we are staying to the hospital in a bus on which we were the only passengers for the princely sum of $2.56 👦)

ii) we have received several offers to come and sit with Josh to give us a break. As things currently stand (i.e. for now and tomorrow) we are OK but will get in touch with those that have offered when we feel like we need the support

iii) my cold is much better (I ran a pyjama-soaking fever in the night which probably burnt off the worst of it...) Unfortunately, Joshua and Libby are both now sniffling - please pray it doesn't hit either of them as badly

iv) we have had some offers for people to help out with Ruben. Again, we will need to assess the shape of the days and weeks to come but will be in touch with those who have offered in due course. Apologies if it takes a bit of time - it doesn't mean we don't appreciate your offers! 

v) We have had lots of offers of meals, including food this evening from the friend of a friend of a friend who owns a Texas BBQ food truck. We laid out about a quarter of what they brought and barely made a dent in it - so some of that has gone in the freezer. I will try and coordinate with everyone who has offered, as we have limited freezer space! 

Following my 'Help!' post, I would also like to recognise the support we have received from Cassy, my Brisbane-based colleague, who has been invaluable in helping us land almost on our feet (even two days ahead of schedule). Thanks Cassy 👦

In case you were wondering about the blankets in the photo, we have discovered that Brisbane is COLD! We had obviously arrived in the middle of a bit of a warm spell - we were a bit shocked to discover a 'real feel' of 10 degrees when we woke up this morning. To us Cairns-ites, who get the woolly clothing at when the temperature drops below 20, it feels like the Arctic. I texted Libby that I wasn't getting out of bed until it warmed up...

Help!

Apologies if this post sounds brusque, I am writing it for the second time. grrrrrrr

My Britishness is having to be laid aside - we could do with some help (survival beats pride).

We have got some much better accommodation, but it is 15 minutes from the hospital. Also I have the worst cold in the history of mankind, so cannot really be on the ward - which means Libby is having to do all the heavy lifting and is getting run rather ragged.

If anyone has any contacts in Brisbane who might be able to help out with any of the following, please could they let us know?

* the short term loan of a car (ideally a 6+ seater, but we can make a 5 seater work)
* maybe a few meals while we are still finding our feet
* a car seat suitable for a 5 year old
* someone who could possibly sit with Josh for while during the day, to give us a break (especially while I can't)
* any knowledge of a good (preferably Christian) kindy in the vicinity of 11 Bramston Terrace, Herston
* anything else that might help us survive that I might not have thought of...

You can email on Daniel dot Simkins (and the usual) at gmail dot com. Or text me if you have my number.

Thanks.

PS. Josh is doing relatively OK - but not clear whether he will get to come home so we can all be together as a family. It would be nice 😞

Thursday

Very quick update before crashing...

Today was a bit up and down. Joshua started the day quite perky, but his central line is still quite uncomfortable, which got him down a bit and made him a bit like a cat on a hot tin roof trying to find a comfortable position. His mood was a bit catching, and everything just kind of caught up at once. It brought home all of a sudden how much you would usually rely on friends in this kind of situation (like we did last week).

However the social worker was quite helpful, and there is lots of support out there. However, finding some local (Christian) friends is high on the agenda...

The good news is that most of the tests done this week have come back reasonably positive. From our quick chat with the consultant it looks like things are on track. He will be on fairly mild chemo this week, before they start with the heavier stuff.

There is also the possibility of some more suitable accommodation becoming available, which would be a huge blessing (although it is likely to be further away, which could bring a different set if problems).

Biggest prayer points are:

* Daily logistics, particularly what to do with Ruben
* Accommodation and transport/travel
* Joshua's physical, mental and emotional well being
* Local support
* Getting to grips with Brisbane

Surgery success

Quick update (catching up on work e-mails took priority this evening 👦)

Pretty good day overall. Libby came into the hospital with Joshua at 7.00am to wait for his surgery. In the event, it didn't happen until around 11.00am, so the rest of us were able to come in in time to see him before he went under (and so I could take him down to surgery).

The surgery all went smoothly, and they managed to put in his line for the chemo (a tube that basically runs from near his heart out to a little double tube in his chest for running the drugs in). He also had a lumbar puncture (and a bit of chemo through that at the same time) and some bone marrow taken out for testing (and unused samples used for research purposes apparently). They also took out the staples from last week's surgery, which was a bonus as Joshua wasn't particularly looking forward to that bit.

They were all pleased with how it went, and Joshua was fairly chipper when I met him in recovery. He said, "I wouldn't mind doing surgery again" - I guess being asleep isn't that hard. They even let him keep the face mask used for oxygen during the surgery.

He has had his first doses of chemo - both oral and through the line as well.

The rest of us are hanging in. Ruben has been very tired I think, which has made his behaviour a little bit challenging. The middle two start school tomorrow, and we will meet with the social worker and get a little more clarity on how we make this time in Brisbane work, which will be nice.

In some ways being in Brisbane is harder to handle than the medical stuff. I remember from our initial MAF orientation days being told that life is like a house built up of different building blocks (e.g. family, house, church, work, friends, community). We were told a key part of transition is putting all these blocks back together after moving to a new place. We have suddenly had all the blocks (except family) whipped out from under us at once - as well as the medical issues to deal with - so it is not surprising if we are feeling a bit at sea. But we will get through. Everyone here is really nice, and it is really set up (it is basically a whole ward dedicated to dealing with the kind of situation we are in).

I might put some more photos up tomorrow, time and circumstances permitting.

Brisbane

Bit pooped to write too much, but in summary:

i) Because Joshua was 'fit to fly', they moved up our timetable
ii) Joshua was discharged at around 10:30 on Monday, and we had six hours to pack, take all the library books back, and pick up all the kids and then get to the airport in time for our 16:35 flight to Brisbane
iii) we arrived in Brisbane at around 8pm, and got a taxi (with a handy taxi voucher from social services) to our accommodation at Mater Hill Place Motel (six of us with luggage in one room, designed for four max...we may need to look into alternatives)
iv) Joshua and I took an uber to the hospital in time for an 8.00am ultrasound, followed by a meeting with Joshua's specialist, Dr Moore
v) Libby and the kids joined us for a bit, and Libby went to see the schooling facilities - no kindy unfortunately
vi) At around 10:30 Joshua and I had the fun of riding to the Royal Brisbane & Women's Hospital in an ambulance - no flashing lights or sirens though
vii) Joshua and I then spent several hours waiting/doing a PET scan - maybe more details to follow later
viii) It looks like the treatment is going to be a 3-4 month process

Please pray for wise decision-making as we try and work out the logistics of how we can make the next 3-4 months work, as well as sufficient capacity to get through the next few days.

Please also pray for Josh tomorrow morning as he has to go into surgery again to have his chemo line put in, as well as various other tests involving large needles in unpleasant places. They will also combine this with the first bout of chemo.

Thank you for your prayers and support.
_________________________________________________________________

and by the by...for those interested in architecture (like Joshua) this is the hospital where Joshus is being treated.

Sunday

Another good day. Joshua and I went down to the Esplanade again this morning after breakfast (Joshua walked most of the way, pushing the wheelchair) and the other met us down there. We wandered along to Muddies playground for a bit and then wandered back to the hospital. I took the others home for lunch, and we moseyed around at home for a while (I managed to get the lawns mowed - which was my aim for the week!) and then headed back to the hospital where we had a nice dinner provided by more friends (along with the gingerbread family - see below). 

Joshua is much better, and other than low energy levels and a bit of limitation on mobility and strength, he is pretty much back to his old self. Unfortunately, he keeps making jokes that make him laugh, which is rather painful. Ruben caught onto this and started doing funny things to make Josh laugh - I don't think he quite got how much it probably hurts! 

We are very hopeful that they will parole him (sorry, discharge him) tomorrow so he can have a couple of days at home before we head down to Brizzie. Joshua keeps asking, "Why am I still here?"!

Just so you know how much Josh is slumming it, this is the bathroom of the room he has been in all week:

And this is the rest of the room (you can see my/Libby's bed in the corner):

This afternoon he obviously got knocked off the VIP spot, and was moved to a much smaller room. With a shabbier view...

And for the sake of posterity, here is our gingerbread family:

We keep finding it a little bit odd how the whole situation isn't seeming like that much of a big deal - this is Joshua's perspective, and it seems to be catching! I keep wondering whether we are in denial, or missing something! 

I was thinking about it while I was mowing, and I realised that someone who has cancer is actually quite different from someone who is dying from cancer. I suspect our feelings would probably be a bit different if the news had been worse. But I hope we would still have been hanging on to God.