We're Back...!!

Joshua and I returned back to Cairns at around midday on Thursday. Joshua was quite keen that it be a secret, which is why the blog has been so quiet! In the family, only Libby knew (although Bethany had a strong suspicion) so it was a nice surprise for the other two. This is Ruben's face when Libby told him...

After having his central line removed on Wednesday afternoon, Joshua was cleared to fly home on Thursday. His operation was much later than expected (around 4pm) and he had quite a lot of trouble waking up from the anaesthetic, but by the next morning, although a little sore, he was feeling well enough to come home. 

Having not been home for 3 months, he was pretty excited to be back again. The first thing he did was to go out on his bike! The most exciting thing was, 'unlimited wifi'...

It is nice to be all back together, although there is going to be some readjustment required to being all back together. It's surprising how quickly you get into little routines. It is also going to be a bit hard getting used to the things that were hard before this all kicked off. 

In some ways, being in Brisbane was a bit like being on the field. We had a simple little house, which required relatively little cleaning, no house maintenance and no garden maintenance. We didn't have much stuff, much in the way of responsibilities and nothing to do or think about other than eating and getting on with the important things. 

It is quite hard to have to come home to a house that has a white floor and needs constant cleaning, lots of grass that needs mowing and shrubs and trees that need pruning and trimming, other projects that need doing, cars that need maintaining, etc. First world problems I guess! 

Anyway, it is good to be back together - now just to get used to it again, and maybe tackle some of those life issues that have been on hold for the last 3 months. 

Thank you to everyone for their prayer and support during this adventure. 

The Bell Tolls

What a lovely sound, not the sound of the bell itself, but what it signifies. The end of cancer treatment. On Tuesday Joshua had the privilege of ringing the 'ringing out bell' and signing his name on the board to show that his treatment is finished. It's been a roller coaster of a ride, but we are so proud of how he handled the treatment and got through to the other side. Of course we are not quite done yet, and we have months if not years of scans and x-rays and blood tests to come; hair to grow back; blood levels to normalise, energy to get back, strength to return, but we have come a long way.

Do I understand why this happened? Not really. Mostly I have come to terms with this, although I have moments of still asking why this happened to Joshua. There are little griefs; like realising that he will not be able to get any academic awards next week at school, when in past years he has swept the board. Also, just having a kid that looks like a 'cancer kid'

Early on in this, God gave me a few verses for Joshua. One was in Exodus 14:4 which says, "I have planned this in order to display my glory". I have no idea how this will play out but I pray that this will be so. Later on it talks about how the Lord opened up a path for the Israelite's, so that they were able to walk through the water on dry ground. I feel that God opened up a path for Joshua and he was able to walk through his chemo treatment. Joshua's consultant said that he has never had a patient go through the chemo schedule that Joshua has gone through without any infections, transfusions or other complications. For me, that has God's hand written all over it. The final verse in Chapter 15 says, "...for I am the LORD who heals you". Amen.

For those of you who read this blog and don't have a faith, I so encourage you to investigate. I don't know what you think about it all, maybe you think it's OK for me if that's my thing or it's an emotional crutch to help me through hard times. Faith is complicated, I don't have all the answers and I certainly have a lot of questions and a lot of things I don't understand. One thing I am sure about though, is that there is God out there who loves me and cares for me. We can have sucky days, months or even years in this life, but to all of us God offers the gift of eternal life that will be beyond our wildest imaginings! Don't miss out.

Days trundle on...

Still not much of note to report. We have spent most of the week working and studying - partly school, partly driving theory. The pause button on Joshua's life got pressed in August - so time to hit 'play' again...

We were at the hospital yesterday for an appointment with the consultant, bloods and line care. Joshua's platelets have hit the lowest point so far, but his white cells and neutrophils are on the rise again. More tests and appointments next week, but for now it is still a waiting game.

We are trying to keep ourselves amused. Yesterday after our hospital visit we wandered over the Goodwill Bridge to visit the Architecture Department at Queensland University of Technology, which is likely to be one of Joshua's top picks. 840m from the hospital as the crow flies - I can't help wondering if this is not a coincidence...

We had a good time. On the ground floor the students (I assume) have built a scale model of the centre of Brisbane. We also visited the workshop where there have all the laser cutting machines for making the models. All pretty cool...

This morning we went for pancakes at the hospital. Every Saturday volunteers from the Children's Hospital Foundation have 'Pancake Saturday' in the Ronald McDonald family lounge on Level 6. I went a couple of weeks ago when we were in hospital, but I wasn't allowed to take any pancakes up to the ward. Last weekend we went to the hospital especially to get pancakes, but due to a combination of leaving late and some event at South Bank that meant there was zero parking, we missed the slot. So we tried again...and they were pretty good 👦

After that, we spent two and a half hours playing Mario Kart on the Wii  U in the Starlight Room. Joshua is trying to make up for lost time..
.

(Joshua is not quite as bald as the photo would suggest - for some reason my phone can't see his hair 👦) 

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!