20 'Marvel'lous Years

Yesterday Joshua was feeling well enough for us all to go to the Marvel Exhibition at the Brisbane Gallery of Modern Art (well enough loosely speaking - he did the entire trip in a wheel chair and it completely wiped him out, but otherwise he enjoyed it).

So, we celebrated our 20th wedding anniversary by looking at models of various heroes and villains, and marvelling (ha!) at the skill of the people who create the models, sets and costumes that go into making these films.   

I have to say, I don't think either of us envisaged us being where we are, doing what we're doing now when we said, "I do". I don't think we'd have anticipated any of the last 12 years either. But God is good, He knows best and personally, I wouldn't have changed any of it (except maybe this last bit...) 

A random selection of photos...

Our ride to the Royal Brisbane & Women's Hospital for PET scan

Joshua's room for chemo pre-phase 

Brisbane's South Bank

Joshua by night...

Joshua models a beanie that came in one of the 'you have cancer' packs

Caleb and Ruben enjoying shooting some people

Joshua and Ruben enjoying the warmth of Brisbane...(not)

Ruben crashed out under the desk, during Joshua's first day of chemo

The rare duck-billed Joshua
[due to Joshua's flu-swab being positive all staff entering his room had to wear masks and gowns.
They got their own back whenever he had to move around the hospital...]

Ruben discovers optical illusions...

Accommodations

Getting through some backlog here 👦

Here is the room we were in when we first arrived:

The thought of staying in the one room for 3-4 months was a bit depressing!

We are so grateful to Childhood Cancer Support, who have provided our current (much more suitable) accommodation. We have a two-bedroom unit (flat I suppose, in English English) with a kitchen, dining room and lounge. There are 13 units on the site - it's almost like living on a compound again 👦 There is also a common room, with a big TV, xBox360, a selection of DVDs and books to borrow. Libby has also discovered the 'gym', which she enjoyed today.

CCS also provides a four-times a day minibus to and from the hospital, which has been really useful. We have discovered that the hospital school also has a teacher-escorted taxi service that runs from our accommodation to the hospital and back at appropriate times. Bethany and Caleb took advantage of this option this morning, which saved Libby or I having to go in with them.

A selection of photos...

Brave Wall

Many thanks to Shannon and family, who sent us the elements of a 'Brave Wall' yesterday. Here it is in our house:

Here we are

So Joshua's lumbar puncture, which represented the last element of his first round of chemo, went smoothly. He went into theatre about 1.00pm, and we were discharged about 3.00pm. The good news is that we are now free from hospital shackles until Friday when we need to go in for a blood test and specialist appointment.

 In theory, Joshua should now be an outpatient for two more weeks, when his next round of chemo is due (around 13th September.) The expectation of the doctors, however, is that some time in this period Joshua will need to be admitted for treatment of the chemo side effects (most likely severe mouth ulcers, or some form of infection due to his lowered immunity). We would appreciate prayer that Joshua will confound their expectations!

In case I haven't given the 'big picture' treatment plan, it is this: four rounds of chemo, after a one week 'pre-phase'. Each round of chemo is 5-7 days, and follows approximately 21 days after the start of the last. This means an approximate two-week period for recovery between each round. The expectation is that after the first round subsequent rounds may well be delayed due to complications - i.e. infection or excessively low blood counts. Blood counts have to recover to a certain level before they can commence the next round. Again, another point for prayer.

The first two rounds are the same mix of drugs, and the latter two are also the same. In between Joshua is taking various pills to combat potential side effects. We also have four fridge magnets with the signs of infection or complication that we need to watch out for. Should these arise we have to go straight to the hospital. In case you are interested:

So now we are trying to work out what the 'new normal' looks like.

Those of you with the time and good maths may have worked out that the best case is that Joshua will be finished with his treatment around the end of November. However, we have been told to expect delays, so we are not counting any chickens quite yet. We are all missing Cairns though, so will be quite happy to come home when they let Joshua go. Even after we return we can expect that Joshua will be under medical supervision for some time. The general lowered immunity is expected to last for at least six months after treatment is completed.

The other positive thing is that the school have said that Ruben can attend prep. He seems keen, but we will see how he feels about it tomorrow...(He is actually mainly keen to go in the school taxi 'with the big kids'. We have said that Mummy has to come with him, at least on the first day...)

Very quick update

Josh has finished this round of chemo (almost) and was let home on a day pass this afternoon. We are now back to overnight at the hospital as he has to be here early tomorrow morning for another lumbar puncture for the final bit of chemo for this round so hopefully we should be back home this time tomorrow (if not before).

Still OK/Faith

Joshua still seems to be tolerating the treatment well, with none of the expected side effects. Our liaison nurse is very pleased and said, "Keep doing what you're doing". Her mantra is that there are three aspects of a good recovery - chemo, nutrition and attitude. We know about the fourth (or possibly first 👦) so please, keep doing what you are doing.

Despite my possible scepticism/confusion about prayer, I do believe that God can intervene - so please keep praying for Joshua. I know it is early days, but I am trying to believe that Joshua's good progress is because God is actively involved, and He will continue to be.

Faith is a funny thing. I remember a couple of years back I had 'habit faith' - that is, faith that I had always had and just kind of trundled along in the way it had always done. Over the last two years, my faith transitioned through 'desperation faith' (i.e. faith because the alternative is too scary to contemplate) to what I would call 'genuine faith' (i.e. faith based in a more complete and real picture of who God is, and His attitude towards me).

During this current situation, I feel like I have had 'gritted teeth' or 'fingertips' faith. Not even having the resources to think about things, but knowing that faith is the only thing that is keeping me going.

My hope and prayer is that through what we are going through, we will all come out with a stronger faith and a stronger relationship with God.

Courage

"Courage does not always roar. Sometimes it is the small voice at the end of the day that says, I'll try again tomorrow".

Mary Anne Radmacher

This is Joshua

This is Joshua. He is my son. And I wanted to make a public declaration of how proud I am of him. He has taken everything that has been thrown at him with stoicism, courage and good humour. He has borne far more than I think I could bear, and it has not phased him.

This is Joshua. He is our son, and we love him.

Cycle 2, Day 2

👦Realised I forgot to post yesterday - mainly because Joshua and I spent the most of the evening playing on the Xbox 👦

Yesterday and today have both gone pretty smoothly. We spent most of yesterday at Level 5C (which is the Oncology Day unit) before being transferred up to 11B (the oncology ward). We missed dinner, but were able to order three meals for Josh from the short order menu (he still has the munchies)...

We had a pretty good night, and then were woken at 7:00 to be told that we needed to get down to 5C again for Joshua's 'double intrathecal'. This is basically chemo delivered through a lumbar puncture directly into his spinal fluid. Joshua quite enjoys general anaesthetic now - he says it makes him feel peaceful. When I arrived to see him after he woke up he said, "Do we get to keep the pony when we move back to the farm?" This was his idea of a joke...(This follows an incident shortly after his original surgery where he woke up suddenly from a very deep sleep and had a morphine-assisted completely unintelligible conversation with me. I foolishly confessed to him later on that this stressed me out...)

Anyway, he seems to be responding well to the treatment (at least, he hasn't suffered any obvious side effects - although this is very early days). The current discussion topic is whether to cut his hair short now, or just let it fall out as it will. Our inclination is to cut it short (mainly for housekeeping purposes) whereas Joshua is more inclined to it fall out patchily because he thinks it will be more entertaining that way...

We are settling a bit into the routine (although are aware that the routine is unlikely to remain very long before it changes). Libby and I are taking turn and turn about at the hospital and with the other kids. It is nice to have the vehicle (and nicer to have found some free parking 👦) We also benefit from a transit minibus that runs four times a day between our accommodation and the hospital.

Our main dilemma is still keeping Ruben entertained. He frequently complains that he wants to go back to 'his world'. (In Ruben-speak a world is anywhere you have to go by aeroplane - e.g. 'granny's world'). There is not much that works for his age group, so we are going to have to work out some kind of daily/weekly routine so he doesn't spend the next 3-4 months jumping from screen to screen. Please pray for wisdom for us in this.

A friend (of a friend) has kindly set up a meal train for us, for those who want to support us in this way. Please see https://mealtrain.com/m749o3.

Thanks for your continuing prayers and support.

(By the way, Joshua is feeling a lot better flu-wise - I think that is God at work, considering how rubbish he was feeling on Tuesday).

Relatively 'light' day today

Only five appointments and three tests, two new medications, and hopefully we'll be back home in time for lunch.

We would appreciate your prayers for Joshua. They swabbed for flu yesterday, and confirmed it today (I had 'real' man flu apparently). He has been prescribed Tamiflu - which we have yet to get - but he is feeling pretty rubbish. His pain score for his headache is higher than any he reported post-surgery 😞 It seems a bit much on top of everything else.

(Brief update while waiting for an appointment...)

Backhanded encouragement for worriers...

"There's no point worrying; it's never the stuff you worry about that gets you anyway".

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. 

The Real Stuff

Having got all the practical and physical details out of the way, I thought I would write something about the 'real stuff'. Most people ask us, "How are you doing?" It's a fair enough question, but not that easy a one to answer.

I guess the bottom line is we are doing OK. We have questions, thought processes and emotions as you might expect, but none of them are taking us beyond breaking point.

In the past, when other people have faced hard situations a bit like this I have always wondered, 'How do they cope? I have been a believer in the fact that God gives you the resources you need to deal with any situation you face (but only when you have to face them - which is why anxiety is a bit of a killer, as you are anticipating hard situations without the resources to face them). As I said to my brother, I'm about to find out whether it's true!

And to be honest, it does seem to be. I was thinking this morning that, although this may be a hard road we have suddenly found ourselves on, we can only face it just like any other road - one foot in front of the other.

We are taking one day at a time, partly because that is all we know about - but I do think that is probably how God wants us to live all the time anyway. My children when they were young always asked, "What are we doing today, Mummy?" God says we are to live like little children, and I think that is what he meant (amongst other things). If there is one thing I have learnt in the last couple of years it is, "Don't worry about tomorrow". Although I have to confess occasionally that is only a theoretical lesson learned!

[WARNING: those allergic to possible heresy may wish to avert their gaze at this point]

The situation has also raised questions about prayer, and specifically whether there is any point to it. I completely believe in the importance and value of prayer in the sense of 'keeping talking to God', but I guess my questions are about 'supplicatory prayer'. For me my thought process goes something like this:

a) God loves me (and Joshua, and everyone) more than I can possibly conceive. (I wrote recently that if we could comprehend even a pin prick of how much God loves us, we would be overwhelmed)
b) God knows everything that was, is and is to come, he is the 'ultimate intelligence.
c) God works all  things together for the good of those who love Him

So why ask God to do particular or specific things? If these things are all true (and I believe they are), then surely praying to Him to do a particular thing is merely interfering or teaching your grandmother to suck eggs? God knows best, He loves us, and He wants the best for us - so surely His ideas about what is the best course of action are the best anyway? Surely the only prayer to pray is, "Thy will be done"?

Having said that, it does say that 'the prayer of a righteous man availeth much', so there must be something to it 👦

So, if I was wearing my normal spiritual hat, without the above thought processes, and for those who have a better understanding than me about these things, please pray:

* that Joshua continues to recover from the surgery as well as he has been
* that he is sufficiently recovered so that he can come from for a day/night before we have to travel down to Brisbane
* that the timing of further treatment is such that we are able to be back in Cairns for the second half of September when my entire immediate family is coming to visit
* for the best possible future diagnoses and that the treatment generally is bearable for Joshua
* for all the logistics and arrangements for going to Brisbane/being in Brisbane/schooling, etc.

Personally, I am praying these following things, and you're welcome to join me:

* that this experience would be something that builds huge amounts of strength and character in Joshua, and is the beginning of a beautifully close relationship between him and God
* that Libby and I are able to learn positive things throughout the process as well, and move closer to Him despite any questions we have
* that we would remain strong and get stronger as a family unit throughout this situation

I guess the difference is that I am praying more for what God can do in us, rather than what we think He should do for us.

We love Joshua, and our Daddy loves us all 👦


(By the way, this is mostly a rhetorical 'blowing off  steam' post - so no need to let me know the answers 👦)

Saturday

Another really good day. Josh is no longer plugged into anything and is now only on the occasional oral pain medication. He is now allowed normal solid food and is much more mobile.

This afternoon we all went down to the seafront (Joshua in a wheelchair) and enjoyed a bit of sunshine. Libby brought dinner (thanks, Janine 👦) and the kids into the hospital, and we had a nice dinner along with much-appreciated quality ice cream.

Joshua is now much more his usual self and enjoyed starting on his Lego model we bought this morning. Although he is still low on energy and quite weak, it is great to see him so much better. It amazes me daily how quickly the human body (at least, a young fit human body!) can repair itself. The wonders of modern medical science also continue to amaze me. I keep thinking that every little thing that they bring out (from the electric beds to each medication, to the drip, catheter, scanners, rubber gloves, dressings and on and on) was someone's life's work. I'm glad Joshua going through this now, and not a hundred years ago!

Updates

Hi All

Joshua has had a good couple of days and nights. He has a young student physio named Will, who comes and visits him daily and has him up and about. Yesterday (Thursday, I think) he took three walks around the ward - during the second of which the much-awaited fart eventuated! This is a good sign and apparently what all doctors and nurses wait for with baited breath after bowel surgery as it indicates the bowl has woken up again after the paralysis it goes into after being handled.

Today has been an even better day with all his tubes coming out except for one cannula that remains for rehydration until he is fully getting everything he needs orally.

To be specific they removed:
* two direct lines into the wound for local anaesthetic
* the catheter
* the naso-gastric tube
* the drain from the wound site
* the left-hand cannula

He was very glad to get these out! (especially the one in his nose, which had been giving him a sore throat, and was quite uncomfortable).

He was also able to demonstrate a 'working bladder' - another sign the medics like to see after surgery. He is now on a diet that includes liquids of all colours 😀 We are just trying to encourage to keep drinking - something he is not great at at the best of times!

So all in all, a pretty good day.

The doctor also confirmed today that she hopes to be able to 'sign him off' on Monday, in preparation for travelling down to Brisbane on Wednesday. We are hoping and praying that they will allow him to come home on Tuesday, so we get at least one day of 'normal'(-ish) before heading off on our new adventures in the big smoke...

Many thanks to all of you who have been praying and supporting us in all other ways. We do appreciate it.

Now I am pretty much up to date on here, I will try and keep that way so this can be our main means of updating everyone as we go.

Pray for Josh (continued)

Sorry,  I ran out of energy to complete the previous post, so here is the rest.

On Wednesday morning one of the surgeons came to see me quite early and asked if Libby was coming in because she needed to talk to all of us together. You can imagine how excited that made me feel...Libby was due in at 9.30, and so the doctor said for the nurses to call her when Libby was in.

Unfortunately, by the time Libby arrived, the doctor had been called into theatre for an emergency surgery, so there were a few extra hours for us to sweat and imagine the worst 😒

In some ways, this was good, because by the time she arrived to tell us what was going on, we had imagined all the worst possible scenarios, which made the facts she presented not seem quite as bad.

The facts being:

* the preliminary results from the biopsy of the removed section of bowel indicated that he had an illness called Burkett's Lymphoma (apparently this is a kind of cancer of the lymphatic system that occurs in children and adolescents)

* Normal treatment would be the surgery that has already been done

* When strong enough Joshua will also require chemo

* All further treatment will be done at the Lady Cilento Hospital in Brisbane

* The timing of transfer to Brisbane and all other treatment is yet to be decided – partially based on outstanding test results, and further scans to be done in Brisbane (the specific type and stage, and I guess location, need to be identified)

* We will probably all go down as a family, and there is lots of support given by the hospital system

* It is a very treatable disease and responds well to chemotherapy (if my memory serves, the 'success rate' is between 85 and 95%)


As you can imagine, this was a bit of a shock to us. However, as I said, having thought the worst did make the actual news seem not quite so bad!

Pray for Josh

Hello all.

This is a 'fuller story' for those you have already heard about our current situation and an even fuller story for everyone else! 

A few weeks ago, we all had a brief but unpleasant stomach bug. We all recovered, but a couple of weeks later Josh was ill again. He recovered but was subsequently plagued with periodic stomach pains. This went on for a couple of weeks, and then last week he spent the whole week off school because the cramps were sufficiently bad. He also mostly lost his appetite. Libby took him to the doctor's two weeks ago and last week. He was given a couple of different kinds of medication and had blood tests taken done didn't seem to show anything untoward. 

On Friday evening he felt a bit better (we were all out watching Caleb being the lead in the school play - somewhat of a triumph, but a different story...) However on Saturday morning he still didn't have any appetite, and then had diarrhoea which was predominantly blood. 

This freaked us out a bit as you can imagine, but we were grateful to be able to get an appointment with the first doctor within half an hour. He suggested a few other possibilities of what could be wrong and recommended a stool sample and some more blood tests for those conditions. However, when Joshua continued to bleed while trying to obtain a sample, we pushed a bit (as we didn't want to have to go to A&E/ED/ER in the middle of the night) and the doctor agreed to give us some notes to take to the hospital.

I subsequently spent the rest of Saturday with Joshua in Accident & Emergency (the Emergency Department/Emergency Room, depending on where you are) while they ran multiple tests to try and determine the cause. To be specific:

* stool sample

* urine sample

* multiple blood tests

* x-ray

* ultrasound

* haemorrhoid check

* CT scan

Eventually, just before Libby and the kids came to visit, they diagnosed an 'intussusception'. If you haven't heard of that, don't be surprised. Although it apparently affects 56/100 children under 18 months, it is much rarer in people older than that. It is basically where a portion of the intestine telescopes in on itself. Something like this: 

After the doctor consulted with some paediatric colleagues, and they consulted with the surgeon, and the surgeon consulted with the Consultant Surgeon, and the consulted with his colleagues in Townsville and Brisbane (larger towns in the State) it was decided that they would need to do surgery to see the extent of the problem, sort what needed sorting if necessary and remove what needed removing (if anything). 

Libby stayed with him overnight in a room on the paediatric ward, and the next morning while waiting for an opening in the surgery schedule.

After going to church and feeding the kids, I was able to drop them off with friends and then join Libby. I managed to get there just before Josh went into surgery, and we were both able to go into theatre and I held his hand while they put him to sleep (around 14:45).

We were told the surgery should take between one and a half and two hours, and we probably wouldn't get any updates until he was in recovery and ready to be moved to the ward. 

We waited in the room he was expected to come to in the 'adolescent ward'. The plan was for Libby to stay with me until Joshua came out, but unfortunately, the surgery went on and on, and Libby had to go and collect the kids. Fortunately (at about the three and a quarter hour mark) I got an update saying that things were going well, but it had turned out more complex than they had first thought, but they expected to be done in a further 45 minutes. They also said he would be going to the surgical ward as they were better set up for post-op care. In the event, the surgery took four and half hours. 

Joshua has since done pretty well, getting up (with much assistance) for a shower on his first morning. However it is quite an uphill struggle to do anything, but he is keeping on with physio exercises he has been given.

On Tuesday he was able to move to 'clear liquids' (i.e. broth and jelly).

However, on Tuesday evening he started to feel nauseous, and despite the anti-emetics put through his canula started vomiting. The nurses had to get the surgical and 'pain team' registrars up, and around midnight we were sent down to radiography for an x-ray to confirm their suspicion that he had an ileus - basically his intestines had gone to sleep as a result of their treatment during the surgery and so everything that had gone in was just sitting fermenting in his stomach. Apparently this happens in 30-50% of such cases. 

The best solution to this problem was to insert a naso-gastric tube (i.e. a small tube inserted up the nose and down the throat into the stomach to drain everything out). This was done. It was a very unpleasant experience for Joshua, but he was as stoic as ever. However, the assurance that 'he would hardly notice it once it was in' didn't really come to pass, and he has found it fairly unpleasant. However, it did reduce the nausea and we managed to get 4-5 hours sleep. 

We have been rotating on and off with one of us staying with Joshua and one of us looking after the kids. 

Big steel lizard

We've visited the Mareeba Wetlands recently for a friend's birthday. This hosts one of the world's few remaining areas of wild rice. The Japanese have decided this is sufficiently important to mark with a large steel lizard (presumably so they know where to find it when all existing rices have been genetically modified out of existence).

Good for climbing on and taking photos of - especially in it's shiny eyes...