Random selection of photos that haven't found their way on to the blog yet (possibly)...

Ruben sleeping peacefully in his own bed - first night back of our short holiday in Cairns

Mr Innocent enjoying the Lagoon during our holiday in Cairns

Joshua & Ruben at the Brisbane Museum

Hulk

Tiger

Lion (unimpressed...)

Baboon painted as a Caleb
(or the other way round, I forget...)

Boys enjoying a brief downpour

Joshua's initials on the car in front...what's the chances? 

Caleb & Bambert
(if we haven't blogged about that, remind me to do so sometime in the future)

Lion (more impressed, and more impressive...)

Still in Brisbane

Sorry for the lack of updates, but not much is happening! Joshua and I (Daniel) are still in Brisbane waiting for clearance to depart. We went and saw the doctor on Friday and for bloods and 'line care'. He is pleased with progress and predicts we should be able to go home the week after next, which will be VERY nice! I think our hearts have grown fond enough for now, and we are quite ready to end this absence...

So in the meantime, I am working and being a 'house-father', and Joshua is mostly eating, watching and working on his various craft projects. After our hospital trip yesterday we wandered down to South Bank and got 'The Donald Trump' from Burger Urge. Joshua has had his eye on it for the last couple of months. It almost defeated us, but we managed to subdue it between us in the end...

The good (mostly) news is that our consultant is happy for Josh to have his monthly follow-up appointments (for the next year) in Cairns. He will have the usual chest x-ray and ultrasound, and the results will go down to Brisbane. So our understanding is that we won't have to come to Brisbane ourselves unless the tests show something untoward - which our doctor doesn't expect. So that is convenient - although Joshua is a bit disappointed that the government won't be paying for him to come and have some holiday time in Brisbane while he is well...

Out of hospital

Hooray, Hooray, Hooray, Joshua finished his chemo today and went home from hospital. 

Joshua on the way down to his final LP

As it was his last round of chemo, the nurses let him rub his own name off the board: 

In a few weeks he will officially be able to 'ring the bell'. Not sure if I mentioned it before or not but the Oncology Department at the Lady Cilento Children's Hospital has a 'Ringing Out' bell for children who have completed treatment. We are so blessed to be able to ring the bell after only a few months - some children never get to ring it, or only get to ring it after years of treatment. Due to the nature of the cancer that Joshua had, the treatment was hard but fast.

Now it's just a waiting game. Joshua's blood results today are already pretty low so please pray against infections in the next few weeks. The sooner his bloods recover the sooner he can come home.  

Back in Cairns

Joshua is now into day 6 of his 7-day hospital stay. Pretty boring really as he's not allowed to leave his room due to the risk of a chemo spill. Tomorrow around lunchtime he will have all his chemo lines disconnected and at some point in the morning will have his last lumbar puncture. Then he will go back to the accommodation to recover. Usually the worst days are between day 10-16 of the cycle and then his bloods should start to be on the up. He will still be at risk of infections while his immunity is low so please keep praying for these final few weeks. Daniel has just been talking to the nutritionist about what to eat to make the process as quick as possible. Please pray for Joshua's appetite to recover quickly so we can start stuffing in all those good foods! 

For us in Cairns it feels pretty strange that we are here and Joshua is still in hospital. It was so great to get the scan result, but I will feel much better when Daniel and Josh are finally able to come back to Cairns. That will be a very exciting day.

The other children went back to school on Friday. I was thinking that they would have Friday off, get used to being back and then start again on the Monday, but there was no stopping them. Even Ruben was up and dressed in his uniform ready to go to Kindy. They are all thrilled to be back and into their normal routine. 

Bethany's informal was apparently 'awesome'. Good job really as we had made quite an effort to make it back here on time! 

Back to Cairns

Yesterday was rather hectic. I spent Wednesday night at the hospital with Joshua and then flew to Cairns on Thursday afternoon. However it was slightly fraught as Joshua had a lumbar puncture under general anaesthetic, which he went into quite early, but then didn't resurface for a long time. He'd been given a larger dose of anaesthetic to keep him still, which meant it took ages for him to wake up. By the time I was allowed into recovery it was getting quite close to the time that I had to leave. He was technically awake and his obs were good but he was pretty out of it. We were waiting for him to be transferred up to the ward so his siblings could say goodbye but after 40 minutes of waiting for a 'wardie' (porter?) the nurse and I decided we would push the bed ourselves. We got back to the room with only a few minutes to say goodbye to a very sleepy Joshua. Then it was back to the accommodation to get our bags, and straight to the airport in the taxi I had booked two minutes earlier.  While we waiting at the gate I realised I still hadn't got around to brushing my hair that day, I probably looked as ragged as I felt!

A slightly bumpy flight back to Cairns, sitting next to a guy discussing farming on cattle stations and we were home. (I seem to be having these discussions a lot recently).

We were picked up by the wonderful Christie Giles who also gave us dinner. It was lovely to be in our own house, especially as my bible study group had bought me flowers and cleaned the house. 

The lovely welcome was somewhat dampened (literally) when I woke in the middle of the night to find a huge leak covering half of my bedroom floor. As I speak the plumber is trying to get to the bottom of it and has ripped up the bedroom carpet. The morning was spent rushing around Cairns looking for a mask for Bethany's school 'informal' (Like a prom but less formal - hence the informal!) tonight. The masks we bought in Brisbane we (Ruben...) helpfully managed to leave behind.

It feels odd to be back. I feel slightly as though I have been transported from one world to another. From the intense world of Oncology, that most people, thankfully, have not had to experience first hand, back to the normal world (where words and phrases like methotrexate, central lines, neutropenia, PET scans, and cytotoxic waste are not commonly used). I'm going to have to get used to having conversations with people that don't revolve around cancer and chemo protocols and talk about things like...actually what do 'normal' people talk about?!

Cairns

Brisbane

Final round

It's my last night in the hospital tonight. I came in with Joshua at 7:15am this morning so he could start his final round of chemo - they don't waste any time! I always forget about the hospital in the time we're out. When I walk back in the door again after a break, there is always a smell, not really bad or good, just a hospital smell that makes my heart sink. I guess it is the associations and the memories that smell brings that trigger the emotions.

In some ways, this round is easier because we know the end is in sight and in others ways it's hard because we feel like we're done, but we're not. It's hard to see Joshua go from, 'normal' energy levels to exhausted and lacking in appetite in only a few hours. For the interested medical people, this is the same as the last round. 4 hours of Rituximab, 3 hours of Methotrexate (with 72 hours of fluids to flush it out), 5 days of Cytarabine and two lumbar punctures.

Although in many ways we are very fortunate because Joshua's treatment has been relatively short, it's hard to think that we won't be done with oncology for a long time. Before all this started, not having really thought about it before, I thought you got diagnosed, got treated and then you were done. It's hard to think that even after remission, there are years of blood tests and scans ahead, many of which will be in Brisbane. Apparently, oncologists don't like far north Queensland!

As an aside, I was feeling very unwell this morning with a migraine and was lying down on a small bench next to Joshua's bed with my eye mask on. (The hospital gig was easier in the big scheme of things than managing Ruben). After a few hours, I suddenly realised it was my birthday - I'd totally forgotten! (We had celebrated at the weekend so don't feel too sorry for me).

Tomorrow I go back to Cairns to try and find our new 'normal'. Lots of things have changed and I think I've changed. I definitely have a greater understanding and compassion for families dealing with cancer. I have had the opportunity to get an insider view of a world that I never gave much thought to before. Some people really have it tough. Not sure what I am going to do with that information yet, but I hope I can use it in some way to help somebody.

All clear

The post we have all been waiting for. After a lot of waiting, Joshua's PET scan showed that all the cancer had gone, what an answer to prayer. Thank you so much to everyone who has prayed and more importantly to our Heavenly Father.

Below shows the first and second PET scan. There are some areas of the body that show red anyway, like the brain, heart, kidneys and liver, and that's normal, all the other red is cancer.

So basically no cancer can be detected, but just in case there are any more microscopic particles, Joshua has to undergo one more cycle of chemo. He's not really looking forward to it, but it's a huge help that he knows the end is in sight. Please don't stop praying for him, he has another month of treatment to go.