Well Josh's "birthday" went of almost without a hitch! Josh's pain was not going very well and he was feeling pretty sore in the lead up to the party and his patches got adjusted up again to try and combat the pain in his head, leg and back. On the day though, he was very excited and had a nice ride to the party and to collect his best buddies Ty and Jas from Big Grove in the "Big Red Engine" - see the pic - although by the end he was very tired and sore. He had a great time opening presents and holding court from Grandma's lounge room. The fire truck(s!) turned up right on time and he had a blast (literally as he got to have a go on the fire hose) checking out all the equipment and talking to the firies. We can't thank them enough for the time and effort they put in. They made our little man VERY HAPPY! See Page 2 of Albany Advertiser for evidence!
After that, representatives from Albany Lions Club joined the fantastic firemen and presented Josh with his Child of Courage Award for "showing exceptional courage through life's hardships". It was such an honour to be recognised by his hospital team (esp beautiful Ranita and Suzanne)for his determination and the fact he tries so hard to keep a smile on through the pain and remembers always to thank his nurses even after painful and distressing procedures. It helps me to feel we are getting something right as you can pretty much throw out the rulebook of how to raise your child when they have cancer!
Huge thanks to my Mum and Dad for letting us have Josh's party there as it was his choice of venue and it was a big ask to let so many people invade their home and garden. Thank you to every single person who came and helped make the day special. Josh says now he is happy and is ready to go to his "new home" (heaven).
On Saturday we also had a surprise visit from Josh's old buddy Captain Starlight to present him with his very own cape complete with his own special message! No other child has one and it was a very touching gesture by this particular girl who we have seen very often and was one of the gorgeous Captains who visited our house last year. Josh adores her and although he did not exactly give them a warm and appreciative welcome, he later asked me if there were Captain Starlight in heaven. That gives you an idea of how much he likes them, and the Starlight Express room at the hospital. They came back the next morning to see if he was up and about and left a very touching note in the letterbox (he was still asleep when they had to head back to Perth).
Also features of the last few days are Josh's Grandad and Great Grandad (known as Uncle) came to stay and his brother Aaron is here for the week. This has lifted Josh no end and he loves his brother so much. He has been trying to get out of bed and spend time with his as much as he can but unfortunately is pretty much restricted to bed needing rest and peace. I had a lovely lunch with Jane who I used to work with at TAFE and who has been a great friend to us all. I hadn't seen her since before christmas so it was a long overdue visit!
This weekend we are looking forward to seeing the kids friends Hannah and Isaac and I can catch up with Rael. It will be so nice to see them and for them to get to say their "see you laters" to Joshie. My Dad and his friend Jan are also coming down which will be nice for the kids too.
I feel in my gut that Josh is running out of time and though I feel some dread and fear but deep down feel at peace with his passing, probably because he is so relaxed and happy to go. Perhaps it will be a fortnight, perhaps more, perhaps less. It is not up to us to make any decisions and that is a huge weight off us now. Josh is now on 84mcgm of Fentanyl and it seems to be working fairly well for the constant pain, it is just movement that is really hurting Josh now. His weight loss is pretty dramatic now as are the Peri-Orbital (eye socket) bruises from his skull tumours.
Send him love to mirror the love he gives into the world.
Hannah
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