Jack’s Journey with Craniopharyngioma

A few weeks back we received news that Jack had been approved to start growth hormone. After a few speed bumps including finding a local dispensing chemist and supplier delays, Jack had his first dose today 😃
Here’s to positive changes ahead 🤞

This week’s appointment is bought to you by ophthalmology!!!

2 years ago, Jack had moved from ICU back to the ward. He is such an amazing kid

Today marks 2 years since we found Jack’s tumour, hard to believe it’s been that long, but also not. We’ve been through so much, and it finally looks like we’re finding our ‘normal’. Hoping the MRI later this month keeps us on this path 🤞

It’s been tough to put this post together, but I also need to remind myself how far Jack has come. Yesterday was the 1 year anniversary of our flight to Sydney, on our way to Jacksonville, and today is the anniversary of the 24 hours of flying from Sydney to get there. Our boy is amazing, strong and determined!

Sorry for being so quiet, life has been getting in the way!
Jack is doing well, smashing goals with his physio, OT and psych. He’s attending school full time, apart from appointments, including attending the inter-school winter carnival and playing 3 games of hockey!
And last months MRI showed the tumour is stable and a small reduction in the cysts!

Firstly, apologies for not keeping everyone updated, the last few weeks have flown by!
We’ll start with the MRI Jack had at the end of February, we hadn’t heard anything, so I contacted our oncologist, and no news was good news, the tumour is stable with a mild reduction. This means our trip to Florida looks like it’s paying off!!
Jack is pretty much back at school full time, apart from ongoing appointments, and NDIS funding has come through, so appointments are frequent!
And lastly, this kid is smashing goals, Friday just gone was the Summer Interschool Sports Carnival, and as reluctant as he was, Jack went and played cricket. He played amazingly, and did well considering it was a 36° day!
We are now counting down to the coming weekend, as he is having his belated 10th birthday party 🥳

What a week this kid has had, 3 full days in a row of school (Tuesday to Thursday), on Monday his psychologist put forward a challenge to him to step out of his comfort zone and try and re-make friends, he was wary at first, but mission accomplished, and this morning was our 3 monthly routine MRI, and Jack stepped up to the plate, no cannula or numbing cream for the contrast dye and mum got to wait in the waiting room!
SMASHING GOALS!!!

The face of a happy boy that has smashed 2 full day’s of school!!!

So proud of this kid, he has been UBER excited all weekend for today, the first day of the school year. He headed of with hopes he could survive the whole day, and he smashed it! He was ready for bed by about 6.30, but no nap or anything when he got home! Let’s see what tomorrow brings 🤞

18 months, what a journey!
18 months ago today Jack was in a day long surgery, the first of now 5 surgeries, to begin the process of removing his tumour. A LOT has happened since then, but we’re now on the up. Tumour is stable, we’ve recommenced i-rehab so an updated report can be forward to NDIS, and we’re looking forward to returning to school and building that up to full time

We’ve got a bit of time before our next appointment, so we finally got to check out the rainbow bridge 🌈

Great news this morning, Monday’s MRI showed the tumour is stable, the best result for 2 months post radiation. Next MRI is in February!

Jack’s class was one of the host classes of the assembly at school today. Even though it wasn’t one of his school days, he went along to join in the fun and come away with the Mathlete Award for his class, not bad for missing half the year!!

Yesterday Jack asked when he can return to school! I spoke to the school deputy last week, and returning was entirely up to when he was ready. So today was the day! This is what greeted him on arrival, his teacher and classmates are amazing

What’s the best way to celebrate your 10th birthday? At home with family and friends, riding your new bike and ending with roast pork and ice-cream cake after almost 4 months away!
This kid has endured so much in such a short time and always comes out smiling!

Quick update...
After spending most of the day emailing back and forth organising permission to go to PCH, we were finally granted permission from the health department at 3pm to head in. The ED nurse was awesome and jumped in the car with us to do a finger prick on Jack, and hung around until we were told it was 144! Just the type of number we like, then we ducked across the road for another COVID test. Now we just get to hang out in iso...

We made it Perth and to our Airbnb, the pilot looked a little young though! 😆
We took a detour to PCH, and found out Jack’s sodium is the same as this morning, so will need to go back on Monday to retest
Now we are just looking forward to a good nights sleep

Update on Jack, after a night in ED, we’ve got his sodium down enough for the hospital to be happy for us to fly home. But, we need to proceed to PCH instead of self quarantine when we arrive.....

Panic stations are go....
Jack had his sodium levels checked this morning as per discharge instructions on Wednesday, and even though he’s been drinking enough, they were too high again. So back at hospital we are, hoping we can get them low enough to fly tomorrow, even if it means we go straight to PCH instead our Airbnb 🤞🤞🤞

Hi ho, hi ho, it’s back to the hotel we go!
Jack was discharged from hospital this afternoon and we’re now back in hotel quarantine until our flight Saturday morning!

Feels like my boy can’t catch a break. We are currently in the emergency department as Jack started showing signs similar to what he had when he was hospitalised in Jacksonville. At least this time I realised what was happening

All check in and ready to go home......

A little update on our travels.... COVID tests on Sunday don’t help when you’re supposed to travel on Monday. We were unable to travel yesterday due to our pre-flight test results not being back in time 😭
BUT we are rebooked for tomorrow thanks to the help of our amazing team, both here and in Australia, COVID tests are redone, as Sundays ones will be too old, now we hang out for another day!

A weekend update on all that is going on. After proton finished on Friday, we packed our bags and headed for a relaxing weekend in Orlando. We planned to head down 5 weeks ago, about the same time Jack ended up in hospital. Our plan was a day at Disney, and a day relaxing by the pool at the hotel, but we had to cut out the day at the pool. We hadn’t even finished at Disney when we received word that flights had been secured, leaving Jacksonville Monday afternoon. Cue panic and reorganisation of everything, were now back in Jax, and getting ready to come home.

And it’s done, Proton Radiation is complete. Was sad to say goodbye to this part of Team Jack - Dr Danny Indelicato, Amy Sapp, Alison and Karl, people I now call friends x

Today was Jack’s second last proton treatment, so I asked if they could take some photos. I didn’t realise until looking at these that they clip his mask down!
Tomorrow is a big day, last treatment and goodbye to our team, plus the ringing of the chimes

We got news tonight we could be back on Aussie soil as soon as next week, pending confirmation of 1 flight. And to make it even better news, it’ll be direct to Perth, so only 2 weeks quarantine!! Send your positive vibes our way 🤞🤞🤞

This kid is a trooper, as much as he hates doing it, he smashed through PT and OT today, the more he does, the stronger he’ll be for our trip home. We just have to get through this LAST WEEK of proton therapy!