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Our dad was diagnosed in October 2017 with Stage 4 aggressive metastatic renal cell carcinoma which had metastasised to his t-12 thoracic spine.
Before his diagnosis, he suffered from rheumatoid arthritis for years, his pain was mostly under control. He then was suffering with severe back pain which would radiate down his right leg and cause weakness and inability to move. After many visits to emergency and ambulances being called out, he was misdiagnosed with sciatica and rheumatoid arthritis.
We then insisted an MRI be done to further investigate what was going on. This is when we were notified of this terrible diagnosis. We were then referred to a neurosurgeon who confirmed that he did in fact have several tumors on his spine, with one being life threatening. He gave us little to no hope but our only option was to undergo life threatening surgery.
Due to its aggressiveness and location on the spinal cord, we had then found out it had eaten through his disc and was at risk of being paralysed within days. He had to undergo urgent and life threatening spinal surgery which involved removal of tumor and spinal fusions fixated. Surgery didn’t go as well as expected due to the type of tumor and it’s location. This tumor is known to rupture and cause heamorrhage therefore they could only remove a tiny portion of it to relieve him from pain and discomfort.
In November 2017, he was readmitted into Liverpool Hospital due to excessive and excruciating pain which then led him to having 10 rounds of high dosage radiotherapy to the t-12 region of the spine. This had only led him to more pain and discomfort. He was then moved into Palliative Care Ward in order to find more suitable pain management. He then was refusing to eat and became very frail. Due to the high dose of pain relief given he got to the point where he could no longer comprehend what was going on. He could no longer do any day to day activities, he became bedridden. With little success, and after many scans they had then offered to do a nerve block, again with many risks involved. Even though we were worried about these risks we felt we had no choice but to try whatever was on offer to him. At this point we are half way through December, and the nerve block had not worked. By this stage we were adamant to have him home for Christmas as we were told he only had 6-12 months survival.
He was then discharged on Christmas Eve, under palliative care home visits and community nurses visiting on a daily basis as he was still not able to do regular activities on his own. He was also still highly sedated on medication.
With no success from treatment, we spent sleepless nights researching all treatment options available. We finally found an option we were willing to try and after 8 months we finally saw results. He was eating again, learnt how to walk again, he was in a better state of mind, his cancer had been stable over this time and we all felt hopeful again. The treatment we had chosen to go with cost us $3,500.00 every 10 days. This was a big burden on our family but at this point we didn’t care about the cost, we couldn’t put a price on his life.
We then could no longer get access to this treatment due to the cost. So once again, after sleepless nights researching we finally found another alternative, this time we had to pack up and get him to travel with us on a 12 hour drive due to him not being able to fly, just to get him seen. This treatment had given us hope as it was much cheaper but also came with a downfall which after several months we realised it was not working.
During this period he was also trialling several types of chemo which some had not agreed with him and made him feel worse, and some had caused more serious side effects which had set him back. The oncologist had decided to put a hold on chemotherapy and give his body a break leading up to Christmas.
November 2018 she had sent him for a checkup scan, and this is where we realised the treatment we had chosen had not worked. The tumors were metastasising at a rapid rate.
He now has 12 metastatic tumors throughout his body. Some being in serious locations and causing excessive pain such as the brain, several on his spine and also his ribs and hip.
He had to undergo urgent radiotherapy to all these tumors that were found. Which set him back once again.
Due to the radiotherapy done on the brain, he is now suffering slight memory loss.
January 2019, he visited his oncologist to start a new chemo, but due to the severe side effects of radiotherapy he was then admitted into hospital where scans were done in order to see what was causing these side effects. After a week of being in hospital, he was discharged and advised not to start his chemo yet, to let his body recover.
Results of the last scan had shown an increase growth of his kidney tumor and his original t-12 spine tumor.
He is now suffering from stabbing/shooting pain from his hip down to his toes on his left side. Pain relief treatment can not put this pain at ease. His radiation oncologist requested an urgent visit after finding out about this pain.
He is currently in Liverpool hospital, awaiting an urgent MRI to confirm spinal cord compression.
Today we faced the devastating news that he will have to undergo future life threatening spinal surgery again caused by the growth of his original t-12 spine tumor.
Unfortunately BUPA- private health insurance has decided to remove spinal surgery cover so he will no longer be covered for this.
Our family will need to come up with the funds in order to pay for this $28,000 surgery, as we have been advised the public wait is too long and he must go private. Along with this, as a family we have decided that in order to get him home again and to live a life pain free we must continue our original choice of treatment which will again cost us $3500.00 every 10 days.
With only one part-time income, our mum is struggling with the thought of this financial burden.
His children:
Nick, currently opened his own business.
Annalisa, is his full time carer
And Stephanie, works full time.
We all help and put in most of what we earn to help with bills, Day to day costs and his standard medical treatment. But unfortunately we are worried we won’t be able to come up with the funds to re-commence our choice of treatment and his spinal surgery.
Our parents have suffered a lot of heartbreak over the last 15 months, and the least we can do is to ease their burden by taking the financial strain away from them and allowing our dad to enjoy his life comfortably.
We ask for any donations of all kinds to help us obtain this treatment, and future spinal surgery. Anything is greatly appreciated.
Many thanks,
Colonna family.
Before his diagnosis, he suffered from rheumatoid arthritis for years, his pain was mostly under control. He then was suffering with severe back pain which would radiate down his right leg and cause weakness and inability to move. After many visits to emergency and ambulances being called out, he was misdiagnosed with sciatica and rheumatoid arthritis.
We then insisted an MRI be done to further investigate what was going on. This is when we were notified of this terrible diagnosis. We were then referred to a neurosurgeon who confirmed that he did in fact have several tumors on his spine, with one being life threatening. He gave us little to no hope but our only option was to undergo life threatening surgery.
Due to its aggressiveness and location on the spinal cord, we had then found out it had eaten through his disc and was at risk of being paralysed within days. He had to undergo urgent and life threatening spinal surgery which involved removal of tumor and spinal fusions fixated. Surgery didn’t go as well as expected due to the type of tumor and it’s location. This tumor is known to rupture and cause heamorrhage therefore they could only remove a tiny portion of it to relieve him from pain and discomfort.
In November 2017, he was readmitted into Liverpool Hospital due to excessive and excruciating pain which then led him to having 10 rounds of high dosage radiotherapy to the t-12 region of the spine. This had only led him to more pain and discomfort. He was then moved into Palliative Care Ward in order to find more suitable pain management. He then was refusing to eat and became very frail. Due to the high dose of pain relief given he got to the point where he could no longer comprehend what was going on. He could no longer do any day to day activities, he became bedridden. With little success, and after many scans they had then offered to do a nerve block, again with many risks involved. Even though we were worried about these risks we felt we had no choice but to try whatever was on offer to him. At this point we are half way through December, and the nerve block had not worked. By this stage we were adamant to have him home for Christmas as we were told he only had 6-12 months survival.
He was then discharged on Christmas Eve, under palliative care home visits and community nurses visiting on a daily basis as he was still not able to do regular activities on his own. He was also still highly sedated on medication.
With no success from treatment, we spent sleepless nights researching all treatment options available. We finally found an option we were willing to try and after 8 months we finally saw results. He was eating again, learnt how to walk again, he was in a better state of mind, his cancer had been stable over this time and we all felt hopeful again. The treatment we had chosen to go with cost us $3,500.00 every 10 days. This was a big burden on our family but at this point we didn’t care about the cost, we couldn’t put a price on his life.
We then could no longer get access to this treatment due to the cost. So once again, after sleepless nights researching we finally found another alternative, this time we had to pack up and get him to travel with us on a 12 hour drive due to him not being able to fly, just to get him seen. This treatment had given us hope as it was much cheaper but also came with a downfall which after several months we realised it was not working.
During this period he was also trialling several types of chemo which some had not agreed with him and made him feel worse, and some had caused more serious side effects which had set him back. The oncologist had decided to put a hold on chemotherapy and give his body a break leading up to Christmas.
November 2018 she had sent him for a checkup scan, and this is where we realised the treatment we had chosen had not worked. The tumors were metastasising at a rapid rate.
He now has 12 metastatic tumors throughout his body. Some being in serious locations and causing excessive pain such as the brain, several on his spine and also his ribs and hip.
He had to undergo urgent radiotherapy to all these tumors that were found. Which set him back once again.
Due to the radiotherapy done on the brain, he is now suffering slight memory loss.
January 2019, he visited his oncologist to start a new chemo, but due to the severe side effects of radiotherapy he was then admitted into hospital where scans were done in order to see what was causing these side effects. After a week of being in hospital, he was discharged and advised not to start his chemo yet, to let his body recover.
Results of the last scan had shown an increase growth of his kidney tumor and his original t-12 spine tumor.
He is now suffering from stabbing/shooting pain from his hip down to his toes on his left side. Pain relief treatment can not put this pain at ease. His radiation oncologist requested an urgent visit after finding out about this pain.
He is currently in Liverpool hospital, awaiting an urgent MRI to confirm spinal cord compression.
Today we faced the devastating news that he will have to undergo future life threatening spinal surgery again caused by the growth of his original t-12 spine tumor.
Unfortunately BUPA- private health insurance has decided to remove spinal surgery cover so he will no longer be covered for this.
Our family will need to come up with the funds in order to pay for this $28,000 surgery, as we have been advised the public wait is too long and he must go private. Along with this, as a family we have decided that in order to get him home again and to live a life pain free we must continue our original choice of treatment which will again cost us $3500.00 every 10 days.
With only one part-time income, our mum is struggling with the thought of this financial burden.
His children:
Nick, currently opened his own business.
Annalisa, is his full time carer
And Stephanie, works full time.
We all help and put in most of what we earn to help with bills, Day to day costs and his standard medical treatment. But unfortunately we are worried we won’t be able to come up with the funds to re-commence our choice of treatment and his spinal surgery.
Our parents have suffered a lot of heartbreak over the last 15 months, and the least we can do is to ease their burden by taking the financial strain away from them and allowing our dad to enjoy his life comfortably.
We ask for any donations of all kinds to help us obtain this treatment, and future spinal surgery. Anything is greatly appreciated.
Many thanks,
Colonna family.
Organizer
Antonino Colonna
Organizer
West Hoxton NSW
