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.