$7,221.15
Johnda/Ben Cure Brain Cancer Foundation
Johnda/Ben
$7,221.15
Cure Brain Cancer Foundation
Johnda/Ben
Johnda/Ben

Erin Johnson's page has now expired

1247 days ago, Erin Johnson created this page in support of Cure Brain Cancer Foundation.

With the help of Johnda's Joggers, Erin Johnson gave everything:

  • They posted 2 times.

  • Shared their page with everyone they could.

  • Received 71 donations from generous family and friends.

  • Raised $7,221.15.

My Story

My name is Ben Johnson (Johnda) and this is the story of my journey so far with brain cancer. This has obviously been an incredibly emotional and eye opening journey. With two young children, and being relatively young myself (38), I had never considered having to face cancer at this point in life. I certainly never expected to be told that my cancer would be incurable and that I am unlikely to see my children grow up, finish school, get married and have their own children. We remain positive...

My name is Ben Johnson (Johnda) and this is the story of my journey so far with brain cancer. This has obviously been an incredibly emotional and eye opening journey. With two young children, and being relatively young myself (38), I had never considered having to face cancer at this point in life. I certainly never expected to be told that my cancer would be incurable and that I am unlikely to see my children grow up, finish school, get married and have their own children. We remain positive however, and I know I can beat the stats we have been given.

In the Spring of 2013 I developed a minor sinus issue that wouldn’t go away. I went to the GP and was prescribed nasal spray and antibiotics, both of which did not help. On my third visit to the GP it was decided that I needed a CT scan on my sinuses to see what was going on.  

On Friday the 6th of December I went to Ringwood Hospital at 9:30am for the scan. I was not too concerned as I felt very normal and was planning to have a hit of golf that day. And then...BANG... life was never going to be the same again. The CT scan showed a tennis ball size tumour in the left frontal lobe of my brain. I was told to go to emergency at St.Vincents hospital in Fitzroy immediately.

Over the next few days I saw many dedicated and caring doctors and nurses who did their best to give me the best treatment possible. To lessen the chance of a seizure occurring, I was immediately prescribed a steroid to minimise the extensive swelling caused by the huge tumour. I had MRI scans, x-rays and many blood tests before surgery just two days after I was admitted.  Monday 9th of December I had a craniotomy to remove roughly 90% of the tumour.

I was very groggy and away with the fairies until lunchtime the following day when I realised I had a huge bandage on my head covering up the 49 staples along the wound in my hairline traveling from ear to ear. Pathology results came back a very long 3 days after surgery: Grade 2&3 mixed oligoastrocytoma. Not good news at all, but also could be worse. 

I spent the next few days recovering before convincing the Doctors I was right to go home on Friday. Two weeks later I had a MRI scan and the results showed that I should have a second craniotomy. They removed roughly 5% more on the 2nd of January 2014. The surgery and recovery went well and I only spent 2 nights in hospital this time. I was then able go home to enjoy some time with my wife and our children while the medical team planned the treatment to beat the remaining 5%.

Samples of the tumour were sent for testing in the Netherlands to potentially be part of a clinical trial, which I did get into. Of 4 treatments available on the clinical trial, I was randomly placed into what we call “the hamburger with the lot” - a mixture of all the other 3 treatments.

The first phase: Radiotherapy (at Ringwood Hospital) and Temozolomide (chemotherapy tablet) daily for 33 days. This treatment seemed to take ages, especially as I had to be driven everywhere as you cannot drive for several months after brain surgery.  
Second phase of treatment: A much stronger dose of Temozolomide daily for 5 days, then 23 days off to let my body heal, for a total of 12 cycles (12 months). I have just completed the 2nd cycle in this phase.

Finding out my prognosis, finding out how many adults are diagnosed, how many children are diagnosed....it really is quite overwhelming when you become aware of how big this problem is. 

Brain cancer touches so many lives, and yet it is the least funded cancer. It kills more people under 40 than any other cancer. These are people in their prime; people with young children, people just in the early days of planning their lives. Children, and their parents, who should never have to deal with this. People just like you. People just like me. 

Quite early on after we learnt about brain cancer, my wife Erin wanted to do something positive in a situation that felt so negative. Searching for a charity to support, who were striving for answers through research, she discovered the Cure Brain Cancer Foundation. The Age Run Melbourne was coming up so she thought she’d get one of her brothers and a friend running with her to raise some money and awareness for brain cancer. And so...’Johnda’s Joggers’ was born...

I have decided to run 10km for The Age Run Melbourne. It won’t be easy at all, but I think it is so important to get out there and raise awareness (and hopefully a few dollars) for such an important cause.

Thank you everyone for your support. The last 6 months since diagnosis have been pretty tough to deal with, but it has been everyone’s support that has helped us through. Erin and I, and our children, are incredibly lucky to have you all in our lives. 

Please share our story to raise awareness for Brain Cancer. 

For more information on the Cure Brain Cancer Foundation go to www.curebraincancer.org.au
You can also follow us on Facebook: https://www.facebook.com/johndasjoggers

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Team

Johnda's Joggers

Jj logo edit june14

We did it! We have raised a total of $50,000!!!!
(we separately donated $8,486 to Cure Brain Cancer Foundation for our High Tea held on 20/7/14).  

What an amazing debut fundraising event! Thank you so much to everyone for your support, your g...

We did it! We have raised a total of $50,000!!!!
(we separately donated $8,486 to Cure Brain Cancer Foundation for our High Tea held on 20/7/14).  

What an amazing debut fundraising event! Thank you so much to everyone for your support, your generous donations and your help in raising awareness of brain cancer.

Go Johnda's Joggers!! We will be doing the 15km at the City2Sea in November (join us if you wish! email johndasjoggers@gmail.com), and we will be back with another big fundraising run in 2015.

 -Erin & Johnda

 Brain cancer is the leading cause of cancer deaths in people under 40 as well as being the leading cause of cancer deaths in children. *Australian Institute of Health and Welfare (AIHW) 2012. ACIM (Australian Cancer Incidence and Mortality) Books. AIHW: Canberra.

It’s the sort of thing you hear happens to other people, not to people you know.

Recently, our good mate Johnda was diagnosed with brain cancer. Johnda is a happily married 38 year old with two pre school aged children, who loves playing golf, the Geelong Cats and having a beer with his mates. Needless to say, his diagnosis has come as a shock to his family and friends so we wanted to create this team to show our support and raise much needed funds required for brain cancer research in Australia.

We would like to involve as many people as possible to help us support the Cure Brain Cancer Foundation. Whether it is through participation in The Age Run Melbourne and collecting donations, or by donating in support of a team member. We will be pushing ourselves to run further than we ever have before by taking part in either the 5km walk/run, the 10km run or half marathon (21km).

Brain cancer research receives very little funding. In 2012, brain cancer only received 3% of federal government cancer research funding. *NHMRC Grant Application Round 2012

Help us help Johnda and the 1600 other people just like him that are diagnosed with brain cancer every year in Australia by donating to our team via one of our team members. Click on the “Give Now” button above to donate and then share our story with others by clicking the “Share” button. Or if you are up for the challenge, join our team and start raising funds yourself (contact  johndasjoggers@gmail.com)

For more information on the Cure Brain Cancer Foundation go to www.curebraincancer.org.au

You can also follow us on Facebook: https://www.facebook.com/johndasjoggers

Continue Reading Hide Story Visit Team
Team

Johnda's Joggers

Jj logo edit june14

We did it! We have raised a total of $50,000!!!!
(we separately donated $8,486 to Cure Brain Cancer Foundation for our High Tea held on 20/7/14).  

What an amazing debut fundraising event! Thank you so much to everyone for your support, your g...

We did it! We have raised a total of $50,000!!!!
(we separately donated $8,486 to Cure Brain Cancer Foundation for our High Tea held on 20/7/14).  

What an amazing debut fundraising event! Thank you so much to everyone for your support, your generous donations and your help in raising awareness of brain cancer.

Go Johnda's Joggers!! We will be doing the 15km at the City2Sea in November (join us if you wish! email johndasjoggers@gmail.com), and we will be back with another big fundraising run in 2015.

 -Erin & Johnda

 Brain cancer is the leading cause of cancer deaths in people under 40 as well as being the leading cause of cancer deaths in children. *Australian Institute of Health and Welfare (AIHW) 2012. ACIM (Australian Cancer Incidence and Mortality) Books. AIHW: Canberra.

It’s the sort of thing you hear happens to other people, not to people you know.

Recently, our good mate Johnda was diagnosed with brain cancer. Johnda is a happily married 38 year old with two pre school aged children, who loves playing golf, the Geelong Cats and having a beer with his mates. Needless to say, his diagnosis has come as a shock to his family and friends so we wanted to create this team to show our support and raise much needed funds required for brain cancer research in Australia.

We would like to involve as many people as possible to help us support the Cure Brain Cancer Foundation. Whether it is through participation in The Age Run Melbourne and collecting donations, or by donating in support of a team member. We will be pushing ourselves to run further than we ever have before by taking part in either the 5km walk/run, the 10km run or half marathon (21km).

Brain cancer research receives very little funding. In 2012, brain cancer only received 3% of federal government cancer research funding. *NHMRC Grant Application Round 2012

Help us help Johnda and the 1600 other people just like him that are diagnosed with brain cancer every year in Australia by donating to our team via one of our team members. Click on the “Give Now” button above to donate and then share our story with others by clicking the “Share” button. Or if you are up for the challenge, join our team and start raising funds yourself (contact  johndasjoggers@gmail.com)

For more information on the Cure Brain Cancer Foundation go to www.curebraincancer.org.au

You can also follow us on Facebook: https://www.facebook.com/johndasjoggers

Continue Reading Hide Story Visit Team

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The Age Run Melbourne 2014

27 Jul 2014 Visit this campaign

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Cure Brain Cancer Foundation