A young families ordeal with Terminal Brain Cancer
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It has taken me a long time to come to the decision to finally write this and ask for help for my family. With 2020 being such a rough year for everyone, I have felt a lot of guilt even considering the thought of reaching out to others for help, especially financial support. If you are reading our story, I appreciate you taking the time out of your day to do so. My family are extremely grateful.
My aim is to write here about our ordeal as a young family dealing with a terminal Brain Cancer diagnosis since April 2020. I want to be as transparent and as informative as possible because I think anyone who is considering offering financial support/support of any kind to my family deserve to hear our story and the emotions and ups and downs we have been going through, my goal is to be open and honest with our experience. If you are interested, please follow and read on, it's a long one!
We appreciate you taking the time to read and share our story. xo
Trigger warning, graphic photos and content included.
Well, here we go...
An introduction to my family, my name is Shae and I am recently 29, Brandon is 28 and we have 3 young children together, Arley is 6, Ivy and Letti are identical twins and they are 4 turning 5 in March. We live in Canberra, Australia. I have worked multiple jobs since the age of 14, but at 18 I secured a full time permanent job in the Public Service, this has been a true blessing over the years, especially now considering the circumstances my family are in. Brandon has also worked from a young age and for the majority of that time he was a car spray painter, no, not a panel beater, a spray painter (he was always setting the record straight with that one!)...
28th of April 2020
This was the day that I received the phone call. Brandon was at work, he walked across the street to grab some lunch when he suddenly couldn't speak properly, the words were in his head but wouldn't come out. He started stuttering and frantically brushing at his nose with his hand, he couldn't help it and didn't know why. Bravely, Brandon managed to walk back across to work where he sat down and his work mates noticed something wasn't right. He was taken to a small hospital near his work where they did a CT Scan on Brandons brain, they weren't sure if he had a stroke or if it was seizure activity. The CT Scan showed 3 masses on his brain and he was then transferred to the local hospital in Canberra. Once he arrived he was transferred to the Nuerology unit and it was there that they sent him off for an MRI. Again, the MRI confirmed the masses and the Nuero Team/Professor came to see him. The Professor stated that he had tumour growth on his brain, that it looked unusual considering his age, 27 at the time, and that he would be booked in for a craniotomy...
Crazy how you can wake up one day, feeling fine to only a few hours later having your entire life change. We get asked if Brandon had any symptoms leading up to that day and honestly, he didn't, nothing suspect or unusual anyway. Thinking back, he had occasionally vomited in the mornings but it wasn't often at all, not enough to cause concern. After the fact, Brandon also said that occasionally he had these bursts of pain in his head but nothing that set off alarm bells, everyone gets random pains/headaches etc. We had no idea what was lingering in the background...
30th of April 2020.
Brandon was taken away for surgery. We were told 4 hours but that 4 hours soon turned to 8 and so on... Once Brandon was out of surgery, he couldn't really communicate well, he had obvious cognitive impairments and it took him some time to get back to 'himself' and learn basic tasks again. He did recover in time but never fully returned to his normal self. The Professor and Nuero Team advised us that they got what they could see out, that again, it looked unusual and that the tumours would be sent off to Sydney and it would take about a week to get the results.
1st of May 2020
The evening of the day after Brandons surgery one of the Nuero Doctors came in to see us, I will never ever forget this moment, it is truly haunting. He walked over and closed the curtain and proceeded to say, we have the results back already and that unfortunately the results aren't good... You have Glioblastoma Multiforme, Grade 4 and this is the deadliest and most aggressive Brain Cancer. Honestly, having that moment play out in my head is so traumatic, I felt so helpless and confused, it was devastating. During this conversation, Brandon managed to ask what the survival rate was... that was when the Doctor advised us that there was no cure for this and that he had given Brandon a prognosis of 12 months left of life. Our world crashed down around us at that very moment. The heaviness of everything was overwhelming, it still is... it was at that moment that we knew our life would never, ever, be the same again. That night the nurses let me stay with Brandon. I just remember silently crying to myself as I was laying next to him, holding him so tightly, I didn't want him to see me upset, imagine how he was feeling... I looked up at him and I could see his eyes were also filled with tears but we just smiled at each other and lay there, wide awake all night, feeling heartbroken but comforted to be there for each other.
After some time in hospital, Brandon was discharged home and we all tried to adjust to our new life. I had to go on unpaid leave from work to become Brandons full time carer and Brandon had to quit his job as he was advised he wouldn't be able to work or drive again. That was really hard for us. Those next few weeks are a total blur, adjusting to massive amounts of medications for Brandon, his recovery and also organising alternative financial supports etc, it was rough. We got approved for disability pension for Brandon and Carers Payment for myself from Centrelink but the amount is so incredibly low, not even close to what we were both earning and when you have a mortgage, bills, medications, appointments, doctors and a life as a family with 3 children and the expenses that come with that, it's just not manageable, financially it has been such a major struggle since.
Brandon went on to receive Radiation and chemo over the next little while. Every day we were at the hospital and with Covid this situation was incredibly tricky given that Brandon could only have one support person with him. We are thankful for the support with our children during this period, it was really difficult, heartbreaking and so stressful but this was made easier with people coming together to help be there for our babies when we had to be at the hospital. Forever grateful.
Over the next few months, Brandon began to show symptoms that something wasn't right and he ended up having a seizure in the car with me (thankfully our children were at school and daycare at the time). He essentially lost control over the right side of his body. He was taken to hospital via ambulance. It was discovered that he had new growth of a tumour on the left side motorstrip of his brain and this was the culprit of the seizure and loss of control of the side of his body. He was booked in for another surgery. While we waited for the surgery Brandon continued to have these seizures. It was extremely confronting but he was always so calm, at least he seemed that way to me... probably because I was a mess! I had strangers help us when Brandon had a seizure at the shops, just after being discharged from another Emergency hospital stay, this has happened a few times and it really confirmed to me that there are some absolutely wonderful and genuine people out there. Our life continued to be a whirlwind of hospital appts and keeping Brandon comfortable and properly medicated as best we could in the lead up to his second surgery.
During the wait, we were so lucky to have a consult with the absolutely incredible Prof. Charlie Teo via zoom call. He advised that if Brandon didn't have this second surgery soon that he would estimate that Brandon only had approx 3 months left to live. He generously offered to perform the surgery for free as he was adamant that he could perform it and perform it well as it was in a risky location (motorstrip), however Brandon would likely suffer from paralysis of the right side of his body and potential that side of his mouth and tongue too. We were so touched that he contacted us so quickly and was willing to perform the surgery for us. Unfortunately it was the private hospital fees that killed that, being that they would charge $30,000 just for the one night. We will never forget that meeting with Charlie, he was SO intensely caring, committed and honest, so generous and openly loving and kind. A wonderful, wonderful human being, we are all so lucky to have a man doing everything he can to help others in similar situations and fight for a cure for this horrific disease.
12th of August 2020.
Brandon had his second craniotomy. The surgery took about 6 hours and thankfully this time when Brandon woke up, he could talk! He had minimal cognitive impairments this time around and just seemed to have a positive outlook. Unfortunately he was paralysed from the knee down to his toes on his right leg/foot and some weakness in his arm and hand. He was so focused and had so much drive in him to rehabilitate himself. He refused the wheelchair, scared myself and the nurses multiple times because he was so stubborn and committed to walking unassisted again... and in the end, he did it! He was walking with just a crutch when we left hospital and it didn't take him long to get rid of that either. The feeling in his leg and foot slowly returned but never completely.
Over the next few weeks Brandon started feeling unwell and had clear fluid leaking from his scar on his head. This continued to get worse to the point where he began vomiting and also had the most horrific headache, he could barely move the pain was so crippling. Another ambulance trip and the team confirmed that he had some kind of infection and would need surgery to remove his bone flap/part of skull.
18th September 2020.
Brandon had his bone flap/part of the top of his skull removed and the infection in his head was drained. The aftermath of this surgery was particularly difficult for Brandon, he had slowly come to terms with the massive scar across his head and the hair loss from chemo and radiation but now he had to come to terms with the fact that his head was differently shaped as the top of it was left without the skull, also having 3 brain surgeries since the end of April took a massive toll on him. Brandon was discharged under Hospital in the home which meant he was hooked up to an antibiotic bag 24/7 which required changing every morning at the hospital. It was really hard on his mental state.
12th of October 2020.
Brandon was back in hospital with ANOTHER infection which required more surgery. He was well and truly over it now. He had said after the 2nd craniotomy, no more surgery and unfortunately had 2 really aggressive infections that needed to be dealt with. During this time fighting infections he was meant to be on chemo after already finishing his first round but it kept having to be pushed back. Since this last operation, Brandon has not had to have any more surgeries and we have been advised that he likely wouldn't be offered another in regards to removal of cancer etc, as there is only so much a body... and brain, can take.
After time recovering, Brandon had an MRI, the chemo hadnt worked but the MRI didnt look overly concerning. Brandon was advised to try 2nd line chemo which was 3x chemo drugs over time, 2x tablet form and 1x IV, it could potentially bring on worsened symptoms and we discussed quality over quantity of life multiple times. Brandon had another MRI 4 weeks later, at the time he wasnt sure of the decision he would make in regards to chemo but at our Oncologist appt for the MRI results (literally 4 weeks after his last MRI) it had been discovered that a tumour had grown out of nowhere in a totally new area of his brain, his temporal lobe (previously right and left frontal lobe areas and motorstrip). In those 4 weeks that tumour had already grown to approx 18mm in size and the tumour previously removed from his motorstrip had also partially grown back. Brandon made the decision to try 2nd line chemo.
Brandon has agreed to me including the below personal information to continue to spread awareness and show just how debilitating brain cancer can be... Over the last few months, Brandon has become progressively worse and we are at the point now where he is losing control of his bladder, with multiple accidents a day, he has no appetite most of the time, cognitive impairments, significant issues with his eyes, loss of control of balance, he often leans to the side/forward or slouched over, he is again losing control of his leg and foot, blistering, vomiting and headaches, totally vague and gets fixated on doing random things throughout the day (that is when he is not sleeping), he also needs to be prompted most of the time. The kids are asking more and more questions now, they can see the changes in him and I am, well, I am just taking each day as it rolls on in. The decline is traumatising for all involved and so, so cruel. Some days are better than other's and we don't know how much time we have left now, everything is so unpredictable. Pallative Care are on board and I am hopeful that we might receive some more support in regards to information moving forward.
Brandon has an MRI this Saturday which we are thinking he will need to be sedated for so once we get those results, I will update this page.
Essentially... and I struggle to write this as I have always been financially secure, I am asking for help. Each week is a struggle to provide what my family needs with the minimal fortnightly payment we get from Centrelink. Once the mortgage is paid each fortnight, I am left with almost nothing which then leaves it impossible to pay for everything we need (groceries, bills, necessities that come with having a young family with 3 children, diesel, appts, anything to make some memories together - Brandon has been wanting to take the kids to the Coast one last time... etc etc, the list goes on...) and to top it all off our house is falling apart (eg. major damage in roof which is now leaking through). Obviously right now, living in the moment is extremely difficult but I am also so anxious thinking about the future and having to provide for my children alone... My hope is that having some finances to help back my family up will help take some of the pressure off. I am desperately asking for help and support if you are in a position to and if not, that is absolutely OK, if all you can do is share with your family and friends or on social media, that would be greatly appreciated. I know this last year was horrific for so many people.
On a positive note, thankfully Brandon has continued to show his dry, sarcastic and witty sense of humour throughout this journey despite how utterly devastating it truly is and that is something we are thankful for.
Obviously this is only a small glimpse in to our life living with this diagnosis/prognosis (although it took me long enough to write this all out, sorry and whoops!) but I hope it not only gave you all some insight in to what we are going through but also helped to educate you on just how debilitating this disease is, not only for the patient but for their family. I wanted to be as informative as possible and give you all some idea of what we are currently going through and to be as transparent as possible especially considering we are asking for financial support.
"Brain cancer is highly debilitating. It can knock our young out in the prime of their life. Right from the time of diagnosis, young people are thrust out of the workforce and unable to live the life they once did. They face a future of months or perhaps years, an unimaginable fate." - Charlie Teo Foundation
In a separate post I am going to write out some information about Brain Cancer, if you have the time, please read, although I know that is a lot to ask after reading all of this! It is so important we educate ourselves and spread awareness because prior to all of this I honestly had no idea - more information regarding Brain Cancer, GBM4 needs to be readily available.
I hope the photos weren't too confronting but again, I am wanting to be as open as possible. Ps. I am the person behind the camera! ;)
If you got this far, I truly, from the bottom of my heart, Thank You, from my family to your family, Thank You.
Shae. xo
My aim is to write here about our ordeal as a young family dealing with a terminal Brain Cancer diagnosis since April 2020. I want to be as transparent and as informative as possible because I think anyone who is considering offering financial support/support of any kind to my family deserve to hear our story and the emotions and ups and downs we have been going through, my goal is to be open and honest with our experience. If you are interested, please follow and read on, it's a long one!
We appreciate you taking the time to read and share our story. xo
Trigger warning, graphic photos and content included.
Well, here we go...
An introduction to my family, my name is Shae and I am recently 29, Brandon is 28 and we have 3 young children together, Arley is 6, Ivy and Letti are identical twins and they are 4 turning 5 in March. We live in Canberra, Australia. I have worked multiple jobs since the age of 14, but at 18 I secured a full time permanent job in the Public Service, this has been a true blessing over the years, especially now considering the circumstances my family are in. Brandon has also worked from a young age and for the majority of that time he was a car spray painter, no, not a panel beater, a spray painter (he was always setting the record straight with that one!)...
28th of April 2020
This was the day that I received the phone call. Brandon was at work, he walked across the street to grab some lunch when he suddenly couldn't speak properly, the words were in his head but wouldn't come out. He started stuttering and frantically brushing at his nose with his hand, he couldn't help it and didn't know why. Bravely, Brandon managed to walk back across to work where he sat down and his work mates noticed something wasn't right. He was taken to a small hospital near his work where they did a CT Scan on Brandons brain, they weren't sure if he had a stroke or if it was seizure activity. The CT Scan showed 3 masses on his brain and he was then transferred to the local hospital in Canberra. Once he arrived he was transferred to the Nuerology unit and it was there that they sent him off for an MRI. Again, the MRI confirmed the masses and the Nuero Team/Professor came to see him. The Professor stated that he had tumour growth on his brain, that it looked unusual considering his age, 27 at the time, and that he would be booked in for a craniotomy...
Crazy how you can wake up one day, feeling fine to only a few hours later having your entire life change. We get asked if Brandon had any symptoms leading up to that day and honestly, he didn't, nothing suspect or unusual anyway. Thinking back, he had occasionally vomited in the mornings but it wasn't often at all, not enough to cause concern. After the fact, Brandon also said that occasionally he had these bursts of pain in his head but nothing that set off alarm bells, everyone gets random pains/headaches etc. We had no idea what was lingering in the background...
30th of April 2020.
Brandon was taken away for surgery. We were told 4 hours but that 4 hours soon turned to 8 and so on... Once Brandon was out of surgery, he couldn't really communicate well, he had obvious cognitive impairments and it took him some time to get back to 'himself' and learn basic tasks again. He did recover in time but never fully returned to his normal self. The Professor and Nuero Team advised us that they got what they could see out, that again, it looked unusual and that the tumours would be sent off to Sydney and it would take about a week to get the results.
1st of May 2020
The evening of the day after Brandons surgery one of the Nuero Doctors came in to see us, I will never ever forget this moment, it is truly haunting. He walked over and closed the curtain and proceeded to say, we have the results back already and that unfortunately the results aren't good... You have Glioblastoma Multiforme, Grade 4 and this is the deadliest and most aggressive Brain Cancer. Honestly, having that moment play out in my head is so traumatic, I felt so helpless and confused, it was devastating. During this conversation, Brandon managed to ask what the survival rate was... that was when the Doctor advised us that there was no cure for this and that he had given Brandon a prognosis of 12 months left of life. Our world crashed down around us at that very moment. The heaviness of everything was overwhelming, it still is... it was at that moment that we knew our life would never, ever, be the same again. That night the nurses let me stay with Brandon. I just remember silently crying to myself as I was laying next to him, holding him so tightly, I didn't want him to see me upset, imagine how he was feeling... I looked up at him and I could see his eyes were also filled with tears but we just smiled at each other and lay there, wide awake all night, feeling heartbroken but comforted to be there for each other.
After some time in hospital, Brandon was discharged home and we all tried to adjust to our new life. I had to go on unpaid leave from work to become Brandons full time carer and Brandon had to quit his job as he was advised he wouldn't be able to work or drive again. That was really hard for us. Those next few weeks are a total blur, adjusting to massive amounts of medications for Brandon, his recovery and also organising alternative financial supports etc, it was rough. We got approved for disability pension for Brandon and Carers Payment for myself from Centrelink but the amount is so incredibly low, not even close to what we were both earning and when you have a mortgage, bills, medications, appointments, doctors and a life as a family with 3 children and the expenses that come with that, it's just not manageable, financially it has been such a major struggle since.
Brandon went on to receive Radiation and chemo over the next little while. Every day we were at the hospital and with Covid this situation was incredibly tricky given that Brandon could only have one support person with him. We are thankful for the support with our children during this period, it was really difficult, heartbreaking and so stressful but this was made easier with people coming together to help be there for our babies when we had to be at the hospital. Forever grateful.
Over the next few months, Brandon began to show symptoms that something wasn't right and he ended up having a seizure in the car with me (thankfully our children were at school and daycare at the time). He essentially lost control over the right side of his body. He was taken to hospital via ambulance. It was discovered that he had new growth of a tumour on the left side motorstrip of his brain and this was the culprit of the seizure and loss of control of the side of his body. He was booked in for another surgery. While we waited for the surgery Brandon continued to have these seizures. It was extremely confronting but he was always so calm, at least he seemed that way to me... probably because I was a mess! I had strangers help us when Brandon had a seizure at the shops, just after being discharged from another Emergency hospital stay, this has happened a few times and it really confirmed to me that there are some absolutely wonderful and genuine people out there. Our life continued to be a whirlwind of hospital appts and keeping Brandon comfortable and properly medicated as best we could in the lead up to his second surgery.
During the wait, we were so lucky to have a consult with the absolutely incredible Prof. Charlie Teo via zoom call. He advised that if Brandon didn't have this second surgery soon that he would estimate that Brandon only had approx 3 months left to live. He generously offered to perform the surgery for free as he was adamant that he could perform it and perform it well as it was in a risky location (motorstrip), however Brandon would likely suffer from paralysis of the right side of his body and potential that side of his mouth and tongue too. We were so touched that he contacted us so quickly and was willing to perform the surgery for us. Unfortunately it was the private hospital fees that killed that, being that they would charge $30,000 just for the one night. We will never forget that meeting with Charlie, he was SO intensely caring, committed and honest, so generous and openly loving and kind. A wonderful, wonderful human being, we are all so lucky to have a man doing everything he can to help others in similar situations and fight for a cure for this horrific disease.
12th of August 2020.
Brandon had his second craniotomy. The surgery took about 6 hours and thankfully this time when Brandon woke up, he could talk! He had minimal cognitive impairments this time around and just seemed to have a positive outlook. Unfortunately he was paralysed from the knee down to his toes on his right leg/foot and some weakness in his arm and hand. He was so focused and had so much drive in him to rehabilitate himself. He refused the wheelchair, scared myself and the nurses multiple times because he was so stubborn and committed to walking unassisted again... and in the end, he did it! He was walking with just a crutch when we left hospital and it didn't take him long to get rid of that either. The feeling in his leg and foot slowly returned but never completely.
Over the next few weeks Brandon started feeling unwell and had clear fluid leaking from his scar on his head. This continued to get worse to the point where he began vomiting and also had the most horrific headache, he could barely move the pain was so crippling. Another ambulance trip and the team confirmed that he had some kind of infection and would need surgery to remove his bone flap/part of skull.
18th September 2020.
Brandon had his bone flap/part of the top of his skull removed and the infection in his head was drained. The aftermath of this surgery was particularly difficult for Brandon, he had slowly come to terms with the massive scar across his head and the hair loss from chemo and radiation but now he had to come to terms with the fact that his head was differently shaped as the top of it was left without the skull, also having 3 brain surgeries since the end of April took a massive toll on him. Brandon was discharged under Hospital in the home which meant he was hooked up to an antibiotic bag 24/7 which required changing every morning at the hospital. It was really hard on his mental state.
12th of October 2020.
Brandon was back in hospital with ANOTHER infection which required more surgery. He was well and truly over it now. He had said after the 2nd craniotomy, no more surgery and unfortunately had 2 really aggressive infections that needed to be dealt with. During this time fighting infections he was meant to be on chemo after already finishing his first round but it kept having to be pushed back. Since this last operation, Brandon has not had to have any more surgeries and we have been advised that he likely wouldn't be offered another in regards to removal of cancer etc, as there is only so much a body... and brain, can take.
After time recovering, Brandon had an MRI, the chemo hadnt worked but the MRI didnt look overly concerning. Brandon was advised to try 2nd line chemo which was 3x chemo drugs over time, 2x tablet form and 1x IV, it could potentially bring on worsened symptoms and we discussed quality over quantity of life multiple times. Brandon had another MRI 4 weeks later, at the time he wasnt sure of the decision he would make in regards to chemo but at our Oncologist appt for the MRI results (literally 4 weeks after his last MRI) it had been discovered that a tumour had grown out of nowhere in a totally new area of his brain, his temporal lobe (previously right and left frontal lobe areas and motorstrip). In those 4 weeks that tumour had already grown to approx 18mm in size and the tumour previously removed from his motorstrip had also partially grown back. Brandon made the decision to try 2nd line chemo.
Brandon has agreed to me including the below personal information to continue to spread awareness and show just how debilitating brain cancer can be... Over the last few months, Brandon has become progressively worse and we are at the point now where he is losing control of his bladder, with multiple accidents a day, he has no appetite most of the time, cognitive impairments, significant issues with his eyes, loss of control of balance, he often leans to the side/forward or slouched over, he is again losing control of his leg and foot, blistering, vomiting and headaches, totally vague and gets fixated on doing random things throughout the day (that is when he is not sleeping), he also needs to be prompted most of the time. The kids are asking more and more questions now, they can see the changes in him and I am, well, I am just taking each day as it rolls on in. The decline is traumatising for all involved and so, so cruel. Some days are better than other's and we don't know how much time we have left now, everything is so unpredictable. Pallative Care are on board and I am hopeful that we might receive some more support in regards to information moving forward.
Brandon has an MRI this Saturday which we are thinking he will need to be sedated for so once we get those results, I will update this page.
Essentially... and I struggle to write this as I have always been financially secure, I am asking for help. Each week is a struggle to provide what my family needs with the minimal fortnightly payment we get from Centrelink. Once the mortgage is paid each fortnight, I am left with almost nothing which then leaves it impossible to pay for everything we need (groceries, bills, necessities that come with having a young family with 3 children, diesel, appts, anything to make some memories together - Brandon has been wanting to take the kids to the Coast one last time... etc etc, the list goes on...) and to top it all off our house is falling apart (eg. major damage in roof which is now leaking through). Obviously right now, living in the moment is extremely difficult but I am also so anxious thinking about the future and having to provide for my children alone... My hope is that having some finances to help back my family up will help take some of the pressure off. I am desperately asking for help and support if you are in a position to and if not, that is absolutely OK, if all you can do is share with your family and friends or on social media, that would be greatly appreciated. I know this last year was horrific for so many people.
On a positive note, thankfully Brandon has continued to show his dry, sarcastic and witty sense of humour throughout this journey despite how utterly devastating it truly is and that is something we are thankful for.
Obviously this is only a small glimpse in to our life living with this diagnosis/prognosis (although it took me long enough to write this all out, sorry and whoops!) but I hope it not only gave you all some insight in to what we are going through but also helped to educate you on just how debilitating this disease is, not only for the patient but for their family. I wanted to be as informative as possible and give you all some idea of what we are currently going through and to be as transparent as possible especially considering we are asking for financial support.
"Brain cancer is highly debilitating. It can knock our young out in the prime of their life. Right from the time of diagnosis, young people are thrust out of the workforce and unable to live the life they once did. They face a future of months or perhaps years, an unimaginable fate." - Charlie Teo Foundation
In a separate post I am going to write out some information about Brain Cancer, if you have the time, please read, although I know that is a lot to ask after reading all of this! It is so important we educate ourselves and spread awareness because prior to all of this I honestly had no idea - more information regarding Brain Cancer, GBM4 needs to be readily available.
I hope the photos weren't too confronting but again, I am wanting to be as open as possible. Ps. I am the person behind the camera! ;)
If you got this far, I truly, from the bottom of my heart, Thank You, from my family to your family, Thank You.
Shae. xo
Fundraising team (3)
Shae Jones
Organizer
Kambah ACT
Jayne Jones
Team member
Carina Sciberras
Team member