Sweeney Family Battles Brain Cancer
Donation protected
They say life can change in an instant……
We were just coming to terms with our son’s diagnosis of Type 1 diabetes in May 2016..
when on the 24th April 2017 at 11.30pm our lives would change forever. I woke to Neil having what I now know was a seizure. He stopped breathing and at one point I thought I had lost him. He was rushed to hospital where after a CT scan and MRI on the 25th we heard the words no one should have to “You have a brain tumour” They had found a mass in the right frontal lobe of his brain. At no point did he have headaches or any signs of having a tumour. The seizure was the first and only sign that something was wrong. On the 28th April he underwent 6 hours of surgery where our amazing surgeon was able to remove 100%. However, Neil had lost all movement on his left side and his speech was also gone. Over the next week and a half, he regained movement and speech came back slowly. He progressed from a full support walker to leaving the ward to come home on a walking stick. He had nurses in tears as he had recovered so well. The pathology came back as a low grade…grade 2 astrocytoma. This was good news but these type of tumours always return but usually not for several years. So, we got on with weekly rehabilitation and progressed well. We even did a week skiing with the kids in the June/July holidays.Life seemed normal again.
It is standard practice to have 3 monthly MRI check ups after this surgery. On the 24th of July, 4 days from 3 months Neil underwent his second brain surgery for another tumour which was directly beside where the first one was removed. This time they again removed 100% and he came through ICU well with all movement and no speech loss but the tumour this time was a higher grade, grade 3 Anaplastic Astrocytoma. This meant 33 radiation treatments over 6 weeks combined with oral chemotherapy and then monthly chemotherapy 5 days on/23 off. To say radiation was tough for Neil and heartbreaking for our family is an understatement. Radiation lulls you into a false sense of security where you are going great for the first 3 week,s and then the affects kick in like being run over by a truck. It was like someone flicked a switch overnight and I lost the person I loved and knew. The negativity, depression and changes in personality were simply unbearable. To stand in your bathroom and shave the rest of your husband’s hair off because it is now falling out in clumps. To lay awake beside the man you love more than life for 8 weeks straight and know he hasn’t slept more than an hour a night in over 2 months. To watch your 9-year-old son and 12-year-old daughter take in the changes in their once active, healthy and strong Dad and think to yourself please let me take this all away. To have to explain to your daughter that “no there is no cure” and to hear the words “Mum is Dad dying?”
On the 8th December things started to change for the worse again…. if they could possibly get worse…. Neil started having more seizures. These were all put down to swelling on the brain from the radiation and medication changes were made each time a seizure occurred. We went through Christmas and New Year and Neil was the best he had been since April. In mid-January this all changed with seizures occurring more regularly. On the 29th January (less than 9 months after his first operation) an MRI showed a new tumour, again in the right side of his brain. For different medical reasons we had to wait until the 24th February for him to undergo his third surgery. I went into theatre as they put him under this time because a day prior to surgery, through tears he said he didn’t think he would survive this one and didn’t want the Doctors to be the last person he ever sees. They had told us without a miracle they wouldn’t be able to remove all of it this time . If the only thing we have been lucky with in all of this is the fact we have the most amazing medical specialists. Our neurosurgeon brought in another neurosurgeon to work along side him and after 8.5 hours they were able to give us that miracle and take it all again. How do you thank these people for saving your husband’s life? A thank you and hug just doesn’t seem enough but they assure you that is all they need.
Neil has some left side weakness and his speech was affected again but he is slowly improving every day. He came home on the 11th March and will attend 6 weeks of rehabilitation to get back coordination and fine motor skills. This tumour is a GBM (glioblastoma multiforme) the most aggressive and worst brain cancer you can be diagnosed with. It kills more children and adults under 40 every year in Australia than any other cancer. There is no cure only ongoing treatment. Neil will start a different regimen of daily chemotherapy combined with immunotherapy on the 15th March. We have been told we don’t have time to wait for a clinical trial we need to start immediately. Immunotherapy is very expensive as it isn’t on the PBS for brain cancer. The three-weekly infusion will be $5000 per infusion and this will need to continue for a minimum of 2 years if it is seen to be working. Our medical team will continue to look for suitable clinical trials both here and overseas. I will travel to the moon if it means saving my husband and my children’s father. The only motivation I need is to look in my children’s eyes and see how much they love their Dad and to hear Neil say he wants to be here to walk Cayla down the aisle and see Blake turn into a man and maybe even meet his grand kids. Pretty simple requests really but no longer a guarantee for us.
The 12th March was our 13th wedding anniversary and this December we will have been together 20 years.We have plans to be sitting together in our 80’s and our bucket list is still very full.
We are ready to fight and if there is a way to beat this bastard disease I will do everything in my power to do it. This is my soul mate, best friend and the most amazing father to our 2 kids.
People say “you are so strong, I couldn’t do it” …You're not given a choice .. no one is. I am not special or exceptional. I just love my husband more than anything and will give everything to save his life.
Our oncologist said "how far would you travel?"
Me... "TO THE END OF THE EARTH!!"
We were just coming to terms with our son’s diagnosis of Type 1 diabetes in May 2016..
when on the 24th April 2017 at 11.30pm our lives would change forever. I woke to Neil having what I now know was a seizure. He stopped breathing and at one point I thought I had lost him. He was rushed to hospital where after a CT scan and MRI on the 25th we heard the words no one should have to “You have a brain tumour” They had found a mass in the right frontal lobe of his brain. At no point did he have headaches or any signs of having a tumour. The seizure was the first and only sign that something was wrong. On the 28th April he underwent 6 hours of surgery where our amazing surgeon was able to remove 100%. However, Neil had lost all movement on his left side and his speech was also gone. Over the next week and a half, he regained movement and speech came back slowly. He progressed from a full support walker to leaving the ward to come home on a walking stick. He had nurses in tears as he had recovered so well. The pathology came back as a low grade…grade 2 astrocytoma. This was good news but these type of tumours always return but usually not for several years. So, we got on with weekly rehabilitation and progressed well. We even did a week skiing with the kids in the June/July holidays.Life seemed normal again.
It is standard practice to have 3 monthly MRI check ups after this surgery. On the 24th of July, 4 days from 3 months Neil underwent his second brain surgery for another tumour which was directly beside where the first one was removed. This time they again removed 100% and he came through ICU well with all movement and no speech loss but the tumour this time was a higher grade, grade 3 Anaplastic Astrocytoma. This meant 33 radiation treatments over 6 weeks combined with oral chemotherapy and then monthly chemotherapy 5 days on/23 off. To say radiation was tough for Neil and heartbreaking for our family is an understatement. Radiation lulls you into a false sense of security where you are going great for the first 3 week,s and then the affects kick in like being run over by a truck. It was like someone flicked a switch overnight and I lost the person I loved and knew. The negativity, depression and changes in personality were simply unbearable. To stand in your bathroom and shave the rest of your husband’s hair off because it is now falling out in clumps. To lay awake beside the man you love more than life for 8 weeks straight and know he hasn’t slept more than an hour a night in over 2 months. To watch your 9-year-old son and 12-year-old daughter take in the changes in their once active, healthy and strong Dad and think to yourself please let me take this all away. To have to explain to your daughter that “no there is no cure” and to hear the words “Mum is Dad dying?”
On the 8th December things started to change for the worse again…. if they could possibly get worse…. Neil started having more seizures. These were all put down to swelling on the brain from the radiation and medication changes were made each time a seizure occurred. We went through Christmas and New Year and Neil was the best he had been since April. In mid-January this all changed with seizures occurring more regularly. On the 29th January (less than 9 months after his first operation) an MRI showed a new tumour, again in the right side of his brain. For different medical reasons we had to wait until the 24th February for him to undergo his third surgery. I went into theatre as they put him under this time because a day prior to surgery, through tears he said he didn’t think he would survive this one and didn’t want the Doctors to be the last person he ever sees. They had told us without a miracle they wouldn’t be able to remove all of it this time . If the only thing we have been lucky with in all of this is the fact we have the most amazing medical specialists. Our neurosurgeon brought in another neurosurgeon to work along side him and after 8.5 hours they were able to give us that miracle and take it all again. How do you thank these people for saving your husband’s life? A thank you and hug just doesn’t seem enough but they assure you that is all they need.
Neil has some left side weakness and his speech was affected again but he is slowly improving every day. He came home on the 11th March and will attend 6 weeks of rehabilitation to get back coordination and fine motor skills. This tumour is a GBM (glioblastoma multiforme) the most aggressive and worst brain cancer you can be diagnosed with. It kills more children and adults under 40 every year in Australia than any other cancer. There is no cure only ongoing treatment. Neil will start a different regimen of daily chemotherapy combined with immunotherapy on the 15th March. We have been told we don’t have time to wait for a clinical trial we need to start immediately. Immunotherapy is very expensive as it isn’t on the PBS for brain cancer. The three-weekly infusion will be $5000 per infusion and this will need to continue for a minimum of 2 years if it is seen to be working. Our medical team will continue to look for suitable clinical trials both here and overseas. I will travel to the moon if it means saving my husband and my children’s father. The only motivation I need is to look in my children’s eyes and see how much they love their Dad and to hear Neil say he wants to be here to walk Cayla down the aisle and see Blake turn into a man and maybe even meet his grand kids. Pretty simple requests really but no longer a guarantee for us.
The 12th March was our 13th wedding anniversary and this December we will have been together 20 years.We have plans to be sitting together in our 80’s and our bucket list is still very full.
We are ready to fight and if there is a way to beat this bastard disease I will do everything in my power to do it. This is my soul mate, best friend and the most amazing father to our 2 kids.
People say “you are so strong, I couldn’t do it” …You're not given a choice .. no one is. I am not special or exceptional. I just love my husband more than anything and will give everything to save his life.
Our oncologist said "how far would you travel?"
Me... "TO THE END OF THE EARTH!!"
Organizer
Maree Cavill
Organizer