#TeamChayse

Hey everyone im Sarah, Chayses Step Mum.

I have known Chayse since he was 5, (now 11, 12 in August) I have looked out for my step children (Chayse and Kody) just as I do my own two boys (Kaiden and Jaysen) being all medical.  (eyes, injections, teeth) 

Ive always ensure since I met them these things were taken care of and if I didn't his story may not have been even given a chance to get out to you all.

Chayse had come to us with worries of headaches, that bad they would eventually turn into migraines and he would throw up... this breaks my heart even thinking about his mother Kirsten took him to a specialist and they started a food diary for what he has been eating, I don't remember much more Communication in regards to this as I remember he asked me fathers day weekend if I could take him to the Eye dr. (Optometrist) 

So off we went to the Optometrist in Berwick, Eden Rise (Specsavers) and if it was not for this appointment we would not have discovered a tumour growing blocking access to the flow of the Cerebrospinal fluid (CSF). This is a clear fluid that surrounds the brain and spinal cord.

It cushions the brain and spinal cord from injury and also serves as a nutrient delivery and waste removal system for the brain. This was blocked causing the fluid to be backed up behind both eyes from this we called his Dad (who would legit be kicked out of emergency if Chayse wasn't seen in 30 seconds, he does not handle these situations well emotionally as you can imagine, its heart wrenching) So we called his Mother and She came and picked him up to take him to the Monash Claytons Hospital Emergency department.

OFCOURSE I would take him I've always looked after there health but Chayse grew in my heart not my stomach therefore doing the right thing, was calling his Mum.

There was a lot of waiting for a diagnosis, but when they eventually came back tous we were told he had a brain tumour, unsure on exactly I will update this information after the last chemo session when we have ALL the paperwork.

Basically they told us at the start due to the location it would be inoperable to remove as such, however a stent had to be put in to allow the Cerebrospinal fluid to flow and protect his brain and spinal cord. They did send some of his tumour off to several other countries they asked to do this but we never heard anything back as it was for research.

Can I just say thru out all this Chayse is honestly my super hero he is just SO STRONG, stronger then anyone I know I look up to this strength, I admire who he is and what he is going thru if I could take his tumour id do it in a heartbeat!

But sadly I cant, Chayse is only 11 years old and one of the smartest kids I know, straight after his first operation  he was building Lego, both eyes eventually swelled up due to the stent surgery, but he still managed to build looking like his eyes were closed, he even unbuilt and built from his imagination. Guys he is amazing!

He has gone thru 4 different chemotherapy's ATM, some worked and shrunk the tumour very slightly but then he needed up with Tourette's and absent seizures. Our poor boy cant seem to catch a break, several chemo's made him sick and lose weight, then he would gain it, it was forever confusing whether it was helping or not, but without the initial surgery we don't even want to know what would have been caused if the fluid had backed up to much and caused a rupture.

So leads me to the part we need to ask help with, at present there is a round table to be planned after his chemotherapy finish's in June.

We have been told by his drs to start looking for private inoperable neurosurgeons, its deflated us, its defeated us, how can a child have to be going thru all this. 

Obviously we want the best neurosurgeon we can find as there will be risks obviously with an inoperable tumour, but what options do we have now :( we have exhausted them.

I don't ask you to donate if you cannot afford it, even a share can help Chayse,  promise all money raised will be going to Chayses for all Medical costs. I appreciate and love everyone who simply aids in getting this page out there so thank you.

This is not a go fund me to take us on a holiday as much as that would be beautiful, we need to ensure his future has the best possible path foreword.

 

and by doing this I need to let go of my ego and ask for help.

(we have set the target to 80k as we have been told it could be between this and MUCH higher, but I do not have anymore details yet I will update this when i know more, I have left some out I am struggling to write this as it is and everyone who knows me knows I love unconditionally)