Joshua's Bucket List Fund
has had the shock of his life. At 15, a brain tumour (Glioblastoma Multiforme or GBM) was found in his right side of his temporal lobe. This tumor is aggressive and a type rarely found in children.
The tumor was the size of a tennis ball, and after three brain surgeries in as many weeks they have removed 95%+ of the tumor. This is giving us a great place to start treatment. Radiation, chemotherapy and Cetuximab infusions are to follow over August and September.
It’s important that we recognise that July 6th, 2015 was the day things changed for him… no more just plodding along… it’s time to get out there and start fitting a life time of experiences into all possible moments.
Being spread around the world, Joshua's family and friends have asked “what can we do?” “How can we help?”. So, we have decided to get a fund together to focus on the treatment of the soul, the heart and the happiness over the coming year.
And we are going to go big! ... the world is a large place with many places to see before you leave it!
So I am asking that you dig into the deep recesses of your sofa, your secret stash in your top drawer or back of the freezer to help contribute to get Joshua the experiences in life every person deserves…
But more than that... what would you recommend Joshua needs to do and see?
Leave us an idea on Joshua's website, and bookmark it to keep up with him on his journey.
Remember back to your teenage years – when you thought you were infallible, untouchable and the world was your oyster… what awesomeness happened in your life to make you as fabulous, fun and strong as you are now?
He would be quite tickled to know today is Pi Day - he was a meme fiend to the end.
There is so much to say, but my broken heart just can't quite find the words yet. It's all too fresh.
Thank you ALL for your support through the thick and now the thin.
You know when you see the romcom movie with the hero riding on his horse behind the perfectly presented girl who pulls aside the branch only to let it go to smack in to our hapless hero's face... Well, last week was the pile of horse shit that our hapless hero landed in followed by the rose bush he then got dragged through.
Until now it's been hard to tell anything was wrong with Joshua other than no hair and a big scar. His doctors have been amazed at how well functioning he's been until this point. It's pretty unusual.
But that changed last week.
His tumors are progressing rapidly and, to put it baldly, his MRI looks like swiss cheese he has so much tumor present. And now, 18 months on, Joshua has reached the point that symptoms and physical changes are coming rapidly. So far; short term memory loss, varying types of seizures, 6th nerve loss in the face (he sounds as if he's had a stroke) and progressive numbness to the left arm and the left leg should follow.
Doctors have warned us that we could be looking at a matter of days, weeks, but most likely not months.
We were to start the CDK4/6 study today, but Joshua has decided not to proceed. This means we can now do all we can (pain pumps, weed etc etc) to keep him comfortable and happy for this last period.
If you do try contact us, please be patient. We've got a lot on our plate currently.
It's a bit long and has pictures, so I figure it might be easier to link.
Monday is a day I'd like to forget. But life, Life's good at that having to DO it thing.
Joshua's MRI did not bring positive results. New growth at the primary site and secondary sites, then the suspicious nodule in the cerebral fluid cavity is very defiantly tumor and there are now nodules in the left hemisphere also.
They basically marched us straight back downstairs for a spine MRI also as tumors here, pretty much mean there will be spinal involvement. None present at this particular point - so a small mercy for the day.
We're in the process of reviewing options for further treatment - some which would be studies based out of State. We've not made a final decision yet.
Things are not going the way a parent would hope them to - we're all feeling a little broken and fragile this week.
Love you all
Hello Joshua, I'm so sorry this is happening to you. I would like to recommend that you go skydiving. Like the song by Tim Mc Graw, Live Like You Were Dying. I actually did that 2 months ago. This is an experience that could never be put into words. Out of The Blue skydiving is in Calhan CO. Just go for it! That's the way to live!
What awful new for all of you and your Family! We feel so lost for words. Just Love him and Hug him and Hold him close to your heart. A Family can never prepare for this news. We will be keeping your family in our thoughts and Prayers
I have been thinking on going on a rafting trip at one point maybe when i go to new Zealand for my wish.