Back in hospital

For better or worse, depending on your view point, Joshua's bloods were good enough on Thursday for him to be admitted to hospital again for his next round of chemo. He spent all day on Thursday as an outpatient getting his pre chemo drug, Rituximab. It was made a little more bearable by family members coming in and out. We had to juggle it a bit, as there wasn't a lot of space and it wouldn't really have worked to have had 10 people standing at the end of Joshua's bed all day. 

At 7pm we got transferred up to the ward and Rituximab was followed by 3 hours of Methotrexate and the usual fluids. The good news is that we have a single room overlooking the river, ready for 'RiverFire' on Saturday night, clearly a priority!  Riverfire is Queensland’s ultimate fireworks display, with more than 20 minutes of fireworks. There will also be aerobatics from the Australian Defence Force.

During the time Joshua is out of the hospital, I forget how horrible the nights are in hospital - but it comes back quickly! The nights are very broken as Joshua has obs taken every few hours, he is given various medications, bloods are taken, fluids changed and the machines are constantly beeping about something - air in the line, pressure in the line, transfusion finished, transfusion nearly finished. Every time the machine beeps, the nurse has to be called in to sort it out. There are also a lot of flashing flights, so Daniel, Joshua and I all use eye masks. (Thanks to those long haul flights, we all have them).

This morning, Joshua had barely woken up when he was told they were ready for him in theatre. He has two lumbar punctures per cycle under general anaesthetic to inject chemo into his spine. Usually he wakes up really fast, but today, he really didn't want to wake up and was very sleepy. Not sure what was going on today as they seemed to be having the same problem with other patients and the recovery room completely filled up. They had to stop the list to allow time for the patients to wake up! Eventually, when his blood pressure was high enough, we were allowed back up to the ward. Joshua was pretty wiped and spent most of the day sleeping. He now has five days of a chemo drug called Cytarabine, run continually; one more lumbar puncture, then hopefully he can go home to recover. Cytarabine is a new drug for him this cycle, so please pray against side effects. All the drugs come with pages of details of possible side effects, which I mostly don't read. The nurse said this one often makes people feel like they have flu. 

Sadly, some of Daniel's family had to leave yesterday evening, but tomorrow we look forward to Daniel's parents and aunt arriving and watching RiverFire in the evening. Hopefully we don't have to change rooms!

Suffering - some thoughts

People sometimes ask questions like, "How can you believe in God when there is so much suffering in the world?" or "Why would a God of love allow so much suffering?" For those of us who are Christians, how do we reconcile what we know about God (that he is good, that he is good all the time, that he is all powerful and that he loves us) with the fact that he allows us and people around us to suffer, sometimes in unimaginable ways?

There are no easy answers to this. I have been listening to Jeff Vines this week and he had some good points, many of which I have used here.

For the Christian, the bottom line is this: the things I do not understand about God and life, do not change the things I do. There is a God and I know he loves me because he gave his son to die for me, and that never changes. The things I do know about God (and the God I know) help me to cope with the things I don't understand, because I trust that he has some good answers, that maybe I will understand someday. 

For the non-Christian, I think the issue is in some ways more complicated and even more disturbing. If you don’t believe in God in the first place, you can’t blame him for things that happen. If God is not real you shouldn’t be upset when bad things happen. If God is not real, life is not sacred and we are nothing but a bunch of chemicals here by accident. When someone dies or someone suffers you should understand, in the words of Tennyson, that, ‘Evolution is red in tooth and claw’. It’s all just dumb blind luck. In fact it’s the survival of the fittest. If someone suffers and dies it’s because they’re not fit, so they’re not surviving. It’s the gene pool strengthening, shedding the weak. If we are indeed the random product of evolution then aggression and domination are good things.

From the Christian point of view, all life is sacred and has value. However, that can only exist in a created scenario where God exists. The point is, you have to resolve the issue of pain and suffering in the context of God. You can’t resolve it outside of God because outside of God you can’t even ask the question.

So how do we resolve it?

In lots of ways, I really don't know. However, although easier said than done on some days, I think it helps having an eternal perspective. Again, Jeff has some good points.

=> There may be a finality to existence here but not to existence itself. The life that is lost is not lost in the hands of the one who made it. God who gave life the first time is able to give life the second time and the second life is far greater that the first life

=> There is a glimpse of God you get in pain that you never get in pleasure

=> What God accomplishes in you in the tragedy is as important as the tragedy itself

=> Somehow deep down inside you know that God has got this

=> On the cross, it appeared that evil was winning and God had lost control. When all seems lost, all is won

=> God decides what to allow into your life and what to prevent. It is your job to receive it, embrace it and allow God to do his work

=> The ocean is the world, the boat is your life, the wind is the spirit of God. In a sail boat you have a role, but it is God who sends the wind. When the wind blows you don’t know where it’s going to blow you. Are we brave enough to allow God to take us into waters, even when they are troubled?

Another nice song. (This is the one that Bethany sang at my dad's funeral).

Captain

Words and Music by Benjamin Hastings & Seth Simmons

Verse 1

Through waters uncharted my soul will embark

I’ll follow Your voice straight into the dark

And if from the course You intend I depart

Speak to the sails of my wandering heart

Chorus

Like the wind You’ll guide

Clear the skies before me

And I’ll glide this open sea

Like the stars Your Word

Will align my voyage

And remind me where I’ve been

And where I am going

Verse 2

Lost in the shallows amidst fear and fog

Your truth is the compass that points me back north

Jesus, my Captain, my soul’s trusted Lord

All my allegiance is rightfully Yours

Feel free to comment, whatever your views. 

Tuesday appointment

Great day yesterday. Joshua and I arrived at the hospital at 7:30 am for his ultrasound and chest x-ray. That was done easily and on time, as it always is. After that we had rather a lot of time to kill before our next appointment at 11am, so I decided to take him out for breakfast across the road from the hospital. I ordered him the biggest breakfast on the menu - all part of the feeding regime! While we were there we were accosted by a retired MAF Mareeba engineer who spotted Joshua's MAF Bangladesh t-shirt. He also has cancer and had just had an appointment.with his oncologist, so he joined us for breakfast. 

After that it was still only 9:30am, so I decided we would just go to our appointment early. I had hardly opened my kindle when we were whisked straight in for Joshua's obs (weight up again, possibly thanks to the huge breakfast!) Then without a pause straight in to see the consultant, and then vcalled straight in for Joshua's bloods. The consultant said we didn't even need to wait for results, they would call us. We were all done before 11am! Clearly the way forward is to go really early to appointments! (or it was a treat from God!) 

Josh, of course, was thrilled, to be done so early and be able to spend more time with Daniel's family who are visiting. We spent the afternoon at South Bank, trying to keep Joshua away from germs. Even better, from Joshua's point of view, although he feels fine his bloods are still rubbish and not good enough to start chemo today. That means he gets a whole day with his relatives at home, or out and about somewhere, and we try for the chemo again tomorrow. He said that's what he prayed for, so although I would just like for him to get on with the treatment, it's nice that's he's having such a good week.

(Not sure what Joshua's oncologist would say about him sitting in the sand and feeding birds!)

Surprise

Joshua had a great surprise today. One of his school friends flew down to Brisbane just to visit him. We had managed to keep it a secret, so when his friend and mum arrived, Joshua was pretty surprised and excited. We were both really moved that they would take the time, effort and cost just to come and see us for the day. On top of that Joshua got letters from his other classmates, chocolates, photos and a new x-box game that he had been wanting.

Just to put it in perspective for those of you who don’t know Australia, it’s a 2 hour flight time here, plus all the usual airport waiting and a bus and taxi to get to the house. Pretty impressive. Two hours of non stop chat later and our guests had to leave to repeat the return journey.

(It's a 20 hour drive, 1685 km, 1047 miles, 2 hour, 10 minute flight time. Roughly the same flight time as flying from London to Barcelona).

I have been so impressed with Joshua’s school friends and their efforts to keep in touch and support him. It’s nice for him, and me. Even though Joshua is very stoic about this whole situation, I know he really misses his friends and home and can’t wait to go back. This visit really cheered him up.

One of his friends wrote in a card, “Hardships often prepare ordinary people for an extraordinary destiny”. C.S. Lewis 

(No pressure Joshua)

'My Lighthouse'

If you haven't ever listened to Rend Collective, give them a try. One of my all time favourite groups. This is a great song with great words. Also try , 'Every Giant Will Fall'.

MY LIGHTHOUSE

In my wrestling and in my doubts

In my failures You won't walk out

Your great love will lead me through

You are the peace in my troubled sea

You are the peace in my troubled sea

In the silence, You won't let go

In the questions, Your truth will hold

Your great love will lead me through

You are the peace in my troubled sea

You are the peace in my troubled sea

My lighthouse, my lighthouse

Shining in the darkness. I will follow You

My lighthouse, my lighthouse

I will trust the promise

You will carry me safe to shore (oh-oh-oh-oh-oh)

Safe to shore (oh-oh-oh-oh-oh)

Safe to shore (oh-oh-oh-oh-oh)

Safe to shore

I won't fear what tomorrow brings

With each morning I'll rise and sing

My God's love will lead me through

You are the peace in my troubled sea

You are the peace in my troubled sea

My lighthouse, my lighthouse

Shining in the darkness, I will follow You

My lighthouse, my lighthouse

I will trust the promise

You will carry me safe to shore (oh-oh-oh-oh-oh)

Safe to shore (oh-oh-oh-oh-oh)

Safe to shore (oh-oh-oh-oh-oh)

Safe to shore

Fire before us, You're the brightest

You will lead us through the storms

Fire before us, You're the brightest

You will lead us through the storms

Fire before us, You're the brightest

You will lead us through the storms

Fire before us, You're the brightest

You will lead us through the storms

My lighthouse, my lighthouse

Shining in the darkness, I will follow You

My lighthouse, my lighthouse

I will trust the promise

You will carry me safe to shore (oh-oh-oh-oh-oh)

Safe to shore (oh-oh-oh-oh-oh)

Safe to shore (oh-oh-oh-oh-oh)

Safe to shore

Songwriters: Gareth Gilkeson / Chris Llewellyn

My Lighthouse lyrics © Capitol Christian Music Group

Just some thoughts

I wasn't sure whether to write this blog and those of you who are not Christians reading this may think I am a nutcase! Actually you may have already thought that and this will just confirm it.

For those of you who don't know, my dad died last year. He had been suffering from Parkinson's for over 10 years and died very quickly last September. I was in Australia when I got the news. It had all happened so quickly there was no time for me to fly home and see him. After I heard, I had to go and pick up the kids from school, but arrived a little early, so decided to go and sit in the park across from the school. While I was sitting looking at the the beautiful hills in the distance I saw my dad and his good friend Derek (he had died a couple of years earlier) waving at me in the distance. I have no idea what it was, it may just have been in my imagination. For me it was a special gift from God because I was one of the few people not to see my dad before he died. What was interesting was that, it wasn't dad and Derek as I remembered them or had ever seen them. They was so young and healthy and strong and so full of energy and vitality. Where they were was a place of such joy and happiness, everything was so vibrant and  alive. The suffering of the previous years had just fallen away and was forgotten. 

Now when I think of my dad, I am sad when I think of what he suffered but I am not sad that he died. The place he is in now is so amazing I almost wish he could have gone earlier before he suffered so much. Quite a few people I know have died this year. I am always sad when I hear, especially for their families, but at the same time I am glad for them, for if they are Christians, I know where they are. I hope they are saying hi to dad and Derek. Jeff Vines says, life is not lost if it's in God's hand. It ceases to exist here on earth but it doesn't cease to exist. Every life is to be seen through the lens of eternity.

This is the context that I think of suffering in. Do I float along in a happy bubble cloud all the time? No way (ask Daniel). Do I struggle with suffering? Absolutely. Do I get angry with God for what's happened to Joshua and the other kids that I see suffering? Definitely. Do I cry, rant, shout and express my emotions? Quite often, but I do try to limit this to once a week! What I do know deep down is that whether I understand it or not, one day God will make everything right and everything beautiful again and all this suffering will fade away.

Normal home day

Nothing much to report. Normal home day. I had to take Joshua's temperature a couple of times. If he has a headache which he did today, I have to check his temperature before he is allowed paracetamol. If it's 38 degrees C I have to take it again in an hour. If it hasn't gone down he has to go straight to hospital. If it's 38.5 degrees C first time round he has to go straight to hospital without a second check. Thankfully all has been well and we haven't had to move ourselves from the couch. (We do move occasionally to stock up on food). Due to the risk of infection, when we are not at hospital we tend to stay at home and avoid other people. It turns out it is surprisingly easy to stay at home and not do much. Josh and I have enjoyed watching lots of movies and lots of episodes of 'The Middle'.

Josh has had a great week. Despite his blood results he has felt better this week than since his initial diagnosis in Cairns. He hasn't been napping or even resting in the day and goes to bed after me (actually not that hard). I think this time around he has been better than after his last cycle of chemo.
Thank you for everyone who has been praying for him and me this week.

We live in a funny cancer bubble - dealing with it every day ourselves and meeting other cancer families and cancer professionals. It's strange to think that out there in the rest of the world, there are lots of people without cancer. For some reason you tend to think that people with cancer are somehow different, even when you have become one of them, but then you realise that we are all just the same. Just people, some with cancer, some without. All just doing a day at at time and dealing with what comes our way.  Good health that we often take for granted is a real miracle. Come and sit in the lobby of the Lady Cilento and watch the children go by. You see all sorts, all ages, all races. Tiny babies with tubes coming out of everywhere and nurses following with oxygen tanks, bald heads and pale faces, small heads with huge scars, wheelchairs, crutches, bandages, smiling faces, tearful faces, angry faces.

In some ways you can get used to anything and even cancer becomes normal. The normal conversation is no longer the weather, but which cancer does your child have, how long have you been here, when were they diagnosed, how long do you expect to be here. Mostly the prognosis is good but the stories are not always happy. What do you say to a mum who says the doctors have run out of options for her 6 year old? Quite sobering. It leaves you with a lump in your throat and lots of questions.

Normal hospital day

Normal hospital day. Arrived promptly at 11am for our 'appointment'. I think actually it's just a random time they give you to make sure you're at the hospital on the day, but bears no resemblance to the time you actually get seen! Anyway, usual routine, we sat for an hour waiting until Joshua had his Obs done at 12:00 noon. Good news is that Joshua is still putting on weight (he's far from heavy) and I am still trying to pour calories into him. Who knew it could be as hard to put on weight as it is to lose it! The aim of this is to avoid the dreaded naso gastric tube which many of the patients have. If you lose more than 10% of your starting weight you get one of these delights to provide nutritional support. Having had one of these for two days in Cairns (but for different reasons) Joshua is keen to avoid the experience again. Hence all the feeding!

Another hour and 20 minutes later we finally got seen. Joshua had his bloods taken and the dressing changed on his central line. So close but still so far from leaving the hospital, we had to wait another 1 hour and 20 minutes for the blood results. By this time we were banging our heads against the wall (obviously not literally, that would have been weird and probably required treatment on another floor). Finally at 3:00pm we got the all clear to go home. Good job really as I had already booked our homeward transport for 3:15pm.

For those of you who like the medical details, bloods were as follows:

Tuesday: Haemoglobin: 106, Platelets: 352, White cell count: 2.7, Neutrophils: 2.24
Friday: Haemoglobin: 97, Platelets: 247, White cell count: 0.6, Neutrophils: 0.1

Rubbish for most people, but normal for Joshua under the circumstances and given the stage he is at in his chemo cycle. What it means is that his immune system isn't up to much and he is at high risk of infection. Please pray that he stays infection free.

We got back to a severe storm warning, including hail. Tomorrow the forecast is for 34 degrees C and sunny.

Update

Pretty quiet here. Daniel is in Cairns with Bethany, Caleb and Ruben and I am here in Brisbane with Joshua. It is his week for recovering from chemo ready for the start of his third cycle next Wednesday. The treatment for his type of cancer is pretty hard and fast. Hopefully that means we will be done with it relatively quickly!

So for us in Brisbane it means a quiet week at the accommodation with a few trips to hospital for check ups. They usually take most of the day so it keeps us pretty occupied. The usual routine is, arrive at the hospital, (hopefully not too early), wait for an hour and get obs done. (weight, blood pressure that sort of thing). Wait another hour to see the consultant who chats and pokes and prods Josh.

This is Joshua's consultant, Andy Moore.

Wait another hour and get bloods taken. Wait another hour for the blood results, to see whether Josh needs any transfusions. Pray that he doesn't, because obviously you don't want him to need one, but also because you can't bear waiting another 3 hours which is how long the transfusion will take! On Tuesday Josh also had a problem with one of his lines (see below) which was blocked, so that meant another hour of waiting for the pharmacy to send down the anticoagulant to unblock it! Joy of joys we also had to return in 24 hours for them to remove the anticoagulant. We arrived on time and then of course, you guessed it, we waited for an hour in the waiting room for a 30 second procedure! 

I am moaning a bit because it's hard waiting, but overall we get excellent treatment, all the staff are lovely and very professional. There are tea and coffee making facilities, food in the fridge that you can help yourself from, a toastie maker, a coffee maker, TVs, teams that come round to entertain you - it's as good as it can be. Here are a few photos from inside the hospital.

A standard single room

Inside the hospital. Oncology day unit is level 5, the ward is level 11.

The roof top garden with a nice view over Brisbane and the river.

Not sure if we mentioned about Joshua's line before. Here's some info for those of you who don't know about these things - I didn't.

A central line is a tube inserted into a vein in the chest. It is used to give chemo and other drugs and also to take blood. It stays in until the treatment is over. The exit site is cleaned once a week and flushed to stop it blocking, and the dressing is changed. Needless to say, Josh does not love this and we all have to try and remember that it's there so we don't knock it or pull it. However, it is much better than all the needles he would have to have without it.

This is roughly how Joshua's looks. Clearly this is not him, he is not that hairy!

So tomorrow it's the waiting game again, obs, bloods, line care. Hopefully then we should have 3 days out of the hospital before we do it all again on Tuesday. Then we get the added bonus of a chest x-ray and an ultrasound. Basically it's an all day job!

On Wednesday Joshua will be admitted for 7 nights for his chemo and we start the parent merry go round again of taking turns to sleep at the hospital and looking after the other 3. However next week it should be more fun because Daniel's brother and his family and his sister are coming to Brisbane to visit. Joshua is really looking forward to that, so hopefully it will be a good week.

Not much happening...

Not much going on here. Joshua is doing OK, although very much in the low energy phase. We managed to make it to the local park yesterday, with Joshua alternating between wheelchair and walking.

We had a nice lazy day today, with Ruben (who is the lie-in determining factor) sleeping in until after 8.00 after some fairly abominable behaviour last night. Please continue to pray for Ruben, who the disruption is probably affecting most. He lacks the means to positively express his emotions, so they come out in rather unhelpful ways. Pray also for patience and wisdom for us parenting him.

We have all been feeling a little low this weekend - we are theoretically about half way through the treatment, but feel like although we have come a long way, there is still a long way to go, and we wonder whether we have the stamina. No doubt God will provide 👦 For our accommodation we have to keep a chart of whether Joshua is an inpatient or outpatient each day - and looking back at September so far he has actually only spent 4 nights as an inpatient - which is quite encouraging really. Hopefully that trend will continue (although, because of the shape of the protocol for the final two rounds, he will need to be in for at least six nights).

My extended family has now all finally reached Cairns, and the other kids and I will be joining them on Tuesday - kind of a bittersweet thing.

Joshua makes a break for it in the wheelchair

Caleb discovers static electricity on the slide...

Truth and (/or) love

Home again

Joshua and Libby made it back at around 10.30 yesterday morning, which was nice. Not so nice was the four hour wait this morning between 7.30am (time told to arrive at hospital) and 11.30 (time Joshua was actually called for his lumbar puncture). We feel there must be a better system...

Anyway, a Subway, a Sprite and an hour and a half later I picked them up from the hospital again, and now, in theory, Joshua is home for the next couple of weeks (twice weekly outpatient visits excepted). Please pray that we/God can keep him infection free once again.

Round 2, day 4

Sorry for no post yesterday. Day 3 tends to be a bit of a tricky one - and I also had a couple of work commitments which kept me busy. I planned to blog in the evening, but around 6pm we were told we had to move rooms. Because Joshua is no longer infectious, we have had to move into a shared room on the 'high dependency' part of the ward - not because Joshua is high dependency, but because that is where the spare bed was.

I found the process of moving to a shared room surprisingly depressing - which just shows how spoiled we have been so far. I think it is the fact that when you have your own room, you can be loud when you want to be loud and quiet when you want to be quiet. In a shared room you have to think about other people. Which is not necessarily a bad thing - but Josh tends to be a late-bedder and his 'roomie' turned his lights out at 8.50. The other downside to a shared room is that parents are not allowed to use the en suites. So we have to go out the airlock* to the toilet in the parents' lounge, do what needs to be done and then come back again.

[* As it is the high dependency part of the ward where all the BMT patients are (Bone Marrow Transplant - nothing to do with sandwiches...) the infection security is a lot higher. So to get in and out you have to press a green button to open the electronic doors into the airlock; wait for it to close; wash your hands using the facilities in the middle; and then wait for the allotted four seconds before pressing next green button that opens the other door into (or out of) the ward. A bit of a hassle at any point, let alone the middle of the night. The end result was that I didn't sleep particularly well last night as I spent the first few hours lying awake trying to persuade myself I didn't need the toilet...This is why I don't like camping...]

Anyway, one upside of sharing a room is that we have seen how well off we are. Joshua's roomie has been on this journey a lot longer, and has had progressive amputations on his leg and now has it completely removed. He is also undergoing chemo at the same time. It makes Joshua's situation seem a lot less of a deal.

Speaking of Joshua, after a slightly tough day yesterday (day 3 seems to be when the steroids make Joshua antsy and give him a low appetite) today we seem to be back on track. Joshua even did some school work! The even better news is that because today is his last IV chemo for this round, he should be able to come home tomorrow and go back in on Friday as an outpatient for his LP. Hopefully we should then have three clear days at home, before the kids and I head up to Cairns for a week to spend time with my extended family who are over for a couple of weeks. We are hoping that this will be a nice time for the kids to meet up with their friends and reconnect with Cairns a bit. Of course, the risk is that it will be really hard to come back. Hopefully Libby and Joshua will be a draw! Please could you also pray for Libby who will be left holding the baby (not quite literally) for the week during which there is a reasonably high risk of infection. So, please also pray it would be an infection-free week.

A couple of pictures:

Many thanks to our friends the Giles who surprised us with these balloons for Joshua. We hope they are still inflated by the time he comes home! 

Ruben likes to dress up as a cowboy - unfortunately Bethany is the only one that has cowboy-like clothes...

The Perfect Cancer Patient

It occurred to me yesterday that Joshua has four traits that make him the perfect cancer patient.

1) Personality - Josh is generally very easy-going, takes life as it comes, and is very good at entertaining himself. Very useful when your life is turned upside down and you end up stuck in a hospital bed for days on end with not that much to entertain yourself (although probably stacks more than there was a few years ago - praise be for mobile devices...)

2) Health - up until this particular incident, Joshua has always been one of the healthiest in our family (probably tied with Bethany). I can probably count on one hand the number of times he has had an illness of any significance (by which I mean a serious stomach bug or the like). The only time he has ever previously seen the inside of a doctor's surgery was for an ingrowing toenail. So his base position for fighting cancer was and is pretty strong.

3) Eating - Joshua takes after his mother and can pretty much eat anything anytime in any context. Useful when trying to build your weight back up after bowel surgery and chemo, for example...

4) Sleep - Joshua has always managed to cope with minimal sleep. He seems to be both a night owl and an early riser (although slightly less so in his teenage years) and seems to be able to get by no problem if he loses sleep (unlike the rest of us, who tend to crumble in one way or the other if we don't get our 8, 9, 10+ hours kip). Pretty useful with nights on chemo, where he has obs every 4 hours and has to get up to get rid of his 'fluids' every 1-2 hours.

Even though this may not have been part of God's master plan, I don't think He was taken by surprise...

Sweet(ish) Sixteen

Happy Birthday, Joshua! 

Probably not the kind of birthday that any of us would have predicted a few months ago, but still pretty good as birthdays go. Joshua managed to get in pretty early for his lumbar puncture (around 10.00am), which means he didn't have to starve quite as long as last time. However, he was a bit more groggy afterwards and not so hungry - so he still has half his ham and cheese sub left in the fridge!  

The nurse kindly took a photo of us before Joshua went into theatre. There is still a vague chance that Joshua has something cold-like, so he is still on 'droplet protection'. This means he gets to wear fancy headgear when he goes out and about in the hospital. 

I am just in my normal clothes 👦

Joshua opened one present before going down for his surgery, and then was very disciplined and saved all the rest of them for when the others had finished school.

Here is the full bunch of bananas...

Below is the present that Joshua has wanted for the longest. Because we left Cairns in such a hurry he thought we hadn't been able to buy it, but fortunately I had managed to pick it up on the Saturday before we left (last one in the shop - the one on display). So it was even more enjoyable to bring it out as the, 'Oh look, there's one more' present 👦

Joshua's preferred solution to the hair loss issue

'Everybody noticed it, but no one wanted to mention the Trump in the corner'

Day out (and back in)

So yesterday being Joshua's last day of freedom, I decided we should try and get out and about. Googling the nearest and easiest to reach green places, I found the 'Mount Coot-tha Botanic Gardens' (Mount Coot-tha being the highest point in Brisbane - although at 287m it's 'mountain' label is slightly dubious).

As we only have a five-seater, I drove the boys while Libby and Bethany took the bus and train to the nearest station. Should be simple, right? 👦

Why is it that you always believe the sat nav over the evidence of your own eyes? Or is it just me? Even though I could see the sign in front of me saying to turn right to the Botanic Gardens, as the sat nav said turn right in x00 metres I, of course, waited. Unfortunately, by that time there was no right turn and I was heading South on the M5...So, of course, we added an extra 10 minutes on our journey doing the old 'exit at the next junction, go round the roundabout, go back the way you came' trick...

We eventually found where we were going, and I dropped off Joshua and Caleb at the gardens and then went looking for Libby (taking Ruben with me, much to his annoyance - our level of trust with Ruben is not that high at the moment...) Libby and Bethany had helpfully left the station and found their way to a hospital close by - the theory being that this was a better landmark to find. Which I did, but unfortunately it was rather a large hospital so it took rather a lot of mobile phone communication to actually find each other. But we did eventually, and then we trekked back to the Botanic Gardens - coming within a hair's breadth of repeating the whole 'M5' experience. Libby agreed that the signposting was not entirely clear (so I retained some self-respect...)

So about an hour and a half after leaving, we all ended up together at the Botanic Gardens. This was about ten to four, and reading through the guide we discovered that most of the exhibits closed at four... The other unfortunate thing was that by the time I got back with Libby and Bethany, Joshua was already beginning to fade. However, he gamely walked around pushing his wheelchair for a bit before sitting in it for the rest of the trip. The gardens were a bit of a let down really - although maybe in a different context we would have enjoyed them. The cafe was closed for renovations, which was a major downer - coffee and ice cream were significant drawing factors in the first place. The sun also chose to start hiding at around four, which also made us less inclined to hang around.

So what with all that, after about half an hour we decided to call it a day. I ordered an Uber for Libby and Bethany on the way back and the whole thing took about 10 minutes. Some things are just worth paying the money for...

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So it's Sunday and we're back in the hospital. Libby was slightly disconcerted to arrive at the hospital at 8.30 this morning (Uber again 👦) to find that no one appeared to be expecting them. However, I think they finally worked out that Joshua was supposed to be there, and told them to come back in an hour while they played musical beds with the very full ward so Joshua could have a room. (Very glad that Joshua is still sniffing, otherwise he would probably have ended up sharing - he has standing instructions now 👦).

This gave Joshua the opportunity to see bits of the hospital he hadn't seen, like the school and the rooftop gardens. It was a good day to do it, as Sunday is always nice and quiet.

Eventually they got into a room and we started Round 2 - which is remarkably similar to Round 1 - except that we are probably a lot more relaxed about it, as we know what to expect and know that as he is not on any new drugs he won't (God-willing) have any new side effects. Still, we are praying for each drug as it gets infused.

Thank you for your ongoing support and prayers. Please keep it up. Despite what I might have written in earlier posts, I don't claim to be a prayer expert and do believe that prayer is impacting Joshua's condition during this treatment.

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Because I may not have mentioned it before, Joshua's hair is now getting quite thin - and very soft, like a baby's 👦 The first few days of it falling out were a bit of a nightmare - a bit like having an ill-groomed dog moulting in the house. The rate of loss seems to have slowed down now though - not sure whether it will pause now until the same point in the next round, or continue to fall out. Either way, we have the beanies ready 👦

A pretty good day

Day minus two of round two today...

The doctor was very pleased with Joshua's progress this morning, and all his bloods are up on Tuesday's - his neutrophils are up to 0.87 (below 1 is 'neutropenic', which is medical speak for 'naff immune system'). His swab taken on Tuesday also came back negative for the 'RSV' (Respiratory Syncytial Virus) which he apparently had after his flu. This meant that today was not spent in total isolation with all medical staff gowned and masked! The doctor was again, very impressed that he had managed to shake it without virtually no immunity. He said Joshua was 'very lucky'. I said we thought there was a different reason - i.e. people on five continents praying for Josh!

Josh has also put on another 1.3kg since Tuesday (after putting on 1.3kg between last Friday and this Tuesday). All kudos to Libby's 'constant feeding' programme 👦

This day went very well - after obs and waiting for the blood test results the OK was given to start this round of chemo which kicked off around midday. It should have taken 6 hours for the chemo and another hour of 'flushing', but for reasons that are not entirely clear Joshua and I managed to escape the hospital by around four fifteen. We were not complaining!

Please do pray for this next round of chemo which starts officially on Sunday. The schedule (or 'protocol') looks this:

Probably more info than you needed and only interesting to medics! The most 'interesting' point is that the 'Double Intrathecal' is a lumbar puncture where they bung doses of chemo drugs directly into his spinal fluid - so Joshua will have the dubious present of a spinal tap on his 16th birthday on Monday...

We hope to be able to make the rest of the day a bit more enjoyable 👦

As a point of interest, the protocol that Josh is being treated with is called R-COPADM (after the initials of the chemo drugs used). The other day I told the doctor that they should try adjusting the protocol to be R-COPADM-P - with the -P being for Pringles (which Joshua has been binging on since he started treatment). Libby pointed out that the -P should be for prayer, which I have to admit probably has more impact than the Pringles 👦

V. quick update...

Doctor was very impressed with Joshua's progress, sufficiently so that (subject to further bloods, chest xray, abdominal ultrasound and heart echogram) Josh will probably start his next round of chemo on Sunday.

Three of four of his blood results have started to increase - with only the neutrophils continuing to drop - I didn't think it could go much lower than 0.27, but apparently, it can! I don't think it can go much lower than 0.06 though...

But the other numbers are sufficiently OK that the doctor is happy to go ahead. So the plan is:

* tests tomorrow and Thursday (or just Thursday, if we get really lucky)
* in at 7.15 on Friday for 'Day -2' - which will be a pretty long day
* hopefully we should then be back home for Saturday before
* going in as inpatients on Sunday for the main chemo (hopefully not quite so early in the day!)

Keep up the praying, and thanks for your support 👦

Still here...

So Joshua is still going strong. A few headaches and his mouth is still a bit sore, but no signs of infection or any of the other warning signs. Wishing we'd taken the consultants bet now 👦 We are in tomorrow for bloods and another consultation. Will be interesting to see what he says...

Joshua is delighting in grossing us out by pulling out clumps of hair - he has been waiting for this...He has been ordered to carry a plastic bag around with him, otherwise it will be like having a moulting dog in the house 😒

The other possible answer to prayer is that we have signed Ruben up for a kindy. We were completing the paperwork for the one at the Mater Hospital, and I took it to the Family Support Officer where we are staying to ask her to act as our 'emergency contact number 2'. She mentioned that several families send their kids to the kindy round the corner (literally - 3 minutes walk). So Libby popped round there and they are happy to take him for up to 4 days a week! He will start on Wednesday - please pray that he will be happy there, as this will make things a lot easier generally.

My two pocket WiFi devices arrived today (long story) so at last we are on our own internet...now just have to work out how long 10GB can last. Videos are banned...

Father's Day / Circus Quirkus

It's Father's Day here - I realised I am a chip off the old block when I got a bucket of Liquorice Allsorts - that was always the go-to present for my Dad 👦

It was a pretty good day. One advantage of being a 'cancer family' is that we get given free stuff - Caleb picked up tickets to 'Circus Quirkus' at the Brisbane Convention Centre, so me and the other kids went this afternoon.

It wasn't quite what I expected, but it was fairly entertaining - and good value for free 👦 There were only six people involved - an MC/ventriloquist/comedian, a clown, a juggler, two gymnastic type ladies and a 'generalist' lady. The last was probably the best - she did an encore which included lying on a special table on her back and juggling 5 large balls with her feet, followed by juggling a table (with her feet) and then stacking 7 suitcases (with her feet). Pretty impressive stuff. Some fairly terrible photos below...

Joshua still seems to be doing OK. He hasn't needed any anaesthetic mouthwash today and is still eating well. When we came back from the circus he and Libby met us half way from the bus station, Joshua having decided he wanted to go for a walk - which was quite an encouraging sign. Thanks for your continuing prayers. If we manage to keep him out of hospital until Tuesday, I think prayer will be a major contributing factor!

Blood

Today we went in for bloods for Joshua, and as expected they were looking fairly rough. However the doctor was impressed that Joshua was sitting on the bed munching on Pringles (he craves salty food at the moment, as it counteracts the funny taste in his mouth from the steroids). He still predicts that Joshua will have to be admitted for some infection or crisis before our next appointment on Tuesday. It would be nice to confound his expectations, but we are trying to be realistic 👦

In this kind of scenario one learns more than one ever wanted to about blood...and being the kind of person I am, there has to be a spreadsheet and a graph. For those who are interested, this is where we are today:

Still hanging above the transfusion lines, but definitely heading in that direction (which is very normal). The right hand two graphs indicate that Joshua has virtually no immune system - so please keep praying that God will keep infection at bay by other means.