Radiation therapy for Emily
$5,002 raised
From 36 Donations
TARGET $5,000
Please support this cause
AUD
$NF2 sucks. Emily’s still recovering from the operation in March to remove tumours from her brain but there’s many more throughout her body and brain.
There are now tumours pressing on her brainstem and in her temporal lobe. This time they can’t be cut out, and need urgent treatment. The brainstem does all sorts of important stuff - like connecting the brain to the body. We need our brainstems to work so our bodies can live.
So Em needs to have the tumours zapped, and quick.
She’s had the mask made, the CT, and the radiotherapy planning has started. On the 21st September the radiation starts for 15days of external beam stereo tactic radiation for 5 days a week.
Estimated fees are $23,890.75. Medicare will rebate a decent portion. But there’ll be a gap of several thousand, and more radiation may be needed after that. Let alone all the random extra medical/medicine/taxi costs that are bound to crop up over these next few weeks.
Last thing Em needs is to worry about finances for any of the necessary things.
So while the oncologist will work on the zapping of the tumours if you can help in any way to zap the financial worries that would be amazing. Right now Em just needs to be able to focus all of the energy she has on health and happiness.
Update
21 Oct 2020
A message to you wonderful people from Em:
"Thank you beautiful friends and family, and friends of friends for your truly mind-blowing generosity. I have been stumbling on how to even begin showing my gratitude to you all with grace.
Vulnerability is a tough one. I've had my fair share of it starting when I was diagnosed back in the late 90's with a complex neurological genetic disorder; Neurofibromatosis Type 2.
I remember swinging in and out of feeling crippled by judgement to seeming invincible, like many rebellious teens.
My first radiation treatment began during a light sun filled snowfall in New York's spring, as a 14 year old (For context, this was just after everyone thought the world was going to end during Y2K). I was in the States because the Australian health system had not yet approved the treatment that we hoped would stabilise/shrink the tumours (very different area than current tumours being treated that were affecting my vestibular/hearing system).
Mum spent countless nights on the old dial up researching the best options to help curtail early disabilities, whilst also preventing me from going under the knife. It was all so frightening. There was so much we didn't really understand nor did I want to.
The US medical system was radically different compared to the stuffy conservative approach here in Australia at the time. We were even invited back to my radiation oncologist’s mansion (yes) for an honest dinner with two other families also having treatment. The hospital put us up in a nice townhouse for the two-week’s treatment and we had a friendly chauffer to take us to and from the hospital each morning. My doctor’s daughter gave me a tour of her wing of the house and asked if I would come to school as her Australian ‘Show and Tell’ (I had better ideas of New York).
I fell in love with street photography, observing the multi ethnic culture - there were so many pockets inside of each other. We stayed for a month starting in Harlem, I loved the food, the street music and dancing.
Salt-N-Pepa Whatta - Man was the current resurrected anthem playing everywhere and I just loved that I could play it on the super-sized headphones at hmv, and then buy my very own single with US notes!
We moved onto Staten Island for treatment then onto the Upper West Side. We spent a lot of time in Central Park, eating rubeun sandwiches and bagels and devoured the absolute best matzo ball soup from a deli in Brooklyn!
I’ll never forget how my first high school crush broke my heart over the phone as I cried on the kitchen counter in Staten Island using an international phone card.
When I came home I stumbled through my adolescence almost unconsciously knowing I needed to live out some certain life-stages.
I met some awesome people and teachers who just somehow intrinsically knew what I needed at the time and those values are still within me each day.
This year, my 20th surgery was planned for 2020.
I was recovering so well physically and was genuinely happy for the first time in rehabilitation. Then, I started having unexpected episodes and passing out - which my neurologist from a different hospital put down to sensory seizures.
Then - my scar just did not look right. The doctor in charge at rehab was not interested in listening to my concerns and I had to advocate for myself.
To top it off the first wave of Covid had begun and visitation restrictions were strict. No Tom, no Mum, no friends.
I pushed for my rights, although the doctor continued trying to send me home. There ended up being two patients left on the whole rehabilitation ward and we were transferred to another location - all the while I knew I was declining.
I followed my gut and sent an email and photo of the wound to my own Neurosurgeon after begging my weekend nurses to get the rehab doctor to come in - which she refused.
My Neurosurgeon responded on the weekend via his iPhone "I think you need a course of antibiotics - who can I speak to that is in charge at your facility?"
The next day I was transferred back to my own neuro hospital of 20 years via ambulance for an emergency 1 hour wash out. I woke up for the first time in ICU - it had been an over 11 hour emergency surgery.
I had severe staphylococcus infection and my Neurosurgeon saved my life along with a plastic surgeon he had to call on once he opened up.
They removed part of my skull, previous plate and had to make a skin graft from my thigh and a living blood vessel from my cheek.
Hair will never grow on my head again.
I was supposed to be in hospital for one week and rehab for maybe one or two weeks for a planned tumour resection in March 2020. But instead I didn't return home for 97 days.
I give huge credit to the arts (visual, music and literature) that I got to experience, and currently have a running track in my head for getting me through this incredibly tough year.
The love, support and energy from every one of you that have reached out to me during this time has lifted me up in ways you cannot even imagine.
I am forever grateful.
“Courage starts with showing up and letting ourselves be seen.” ~ Brené Brown
“Now 'here in the waiting there is grace” ~ MHN
*Review with neurological radiation oncologist early 2021, and my awesome Neurosurgeon (at my original neuro hospital) will continue my care as usual and it will be the constant waiting game of symptoms vs monitor via MRI. Tomorrow I officially meet my plastic surgeon in his rooms for the first time for review."
DONATIONS36
Lisa Shadforth
Mon, 12 Oct 2020
$ 200
Big hugs & love to you gorgeous Emily
Big hugs & love to you gorgeous Emily
$ 200
Laurelin Okan
Tue, 6 Oct 2020
$ 47
My love to you surgery sister xxx
My love to you surgery sister xxx
$ 47
Anonymous
Mon, 28 Sep 2020
$ 40
$ 40
Fundraising for
Emily BlockBrain tumours from NF2 are pressing on Emily’s brainstem. She needs radiation therapy urgently. Help raise $ to cover the gap fees and associated costs of this necessary medical treatment.
Funds banked to:
Emily Block
Campaign creator
KO
Katie O'Brien
Yarraville, VIC
Created Sep 2020
$5,002 raised
From 36 Donations
TARGET $5,000
Please support this cause
AUD
$Fundraising for
Emily BlockBrain tumours from NF2 are pressing on Emily’s brainstem. She needs radiation therapy urgently. Help raise $ to cover the gap fees and associated costs of this necessary medical treatment.
Funds banked to:
Emily Block
Campaign creator
KO
Katie O'Brien
Yarraville, VIC
Created Sep 2020