Adventures for Tom
Donation protected
This fundraising effort is for our amazing boy Thomas who has terminal brain cancer. Here is his story:
Thomas Beattie is a sweet, funny and very brave seven-year-old boy from Brisbane, Australia. He has a twin brother Cameron and a little sister, Lula. In Dec of 2017, doctors at Lady Cilento Children's Hospital discovered a large brain tumour in Tom's MRI. He had suffered from increasing fatigue, drowsiness and sporadic headaches over the previous few months and now we had our answer. A 5cm medulloblastoma tumour was situated adjacent to his brain stem and in the posterior fossa area, behind the cerebellum. This mass was blocking the pathway of Tom's cerebral spinal fluid (CSF) from draining into his spine and so he underwent emergency surgery to relieve the fluid build up in is his brain through the insertion of an external ventricle drain (EVD). Four days later, Thomas underwent his tumour resection procedure. Six hours of surgery resulted in what we thought was a complete removal of the tumour. A few days later he needed to have a shunt permanently implanted in his head to assist with the continued draining of his CSF. The following couple of weeks and months were harrowing though as we learnt of the impact of the tumour surgery on his brain.
Thomas came out of the surgery with Posterior Fossa Syndrome and throughout the year, we learnt that he was suffering from a very severe form of this type of brain injury. Thomas had a difficult journey ahead of him. He was to battle the possible return of his tumour with six weeks of radiotherapy and four rounds of chemotherapy. In and around this treatment Tom's brain also had to relocate the pathway to every muscle in his body. He had lost the ability to see, swallow, speak, sit, stand, walk or move any part of his body. His movements began to return but with no control. Once he had some control he had to find the nuance of control and build up muscle strength that he had lost after months of being bed and wheelchair bound.
Tom showed incredible resilience, determination, courage and patience as he fought every battle he was faced with. He endured having a general anaesthetic every day during his radiation regime. Thomas then suffered from constant vomiting and multiple infections as a result of his chemotherapy which meant he spent little time at home in the first six months of 2018. His rehabilitation was arduous and frustrating for a boy who was once so active, creative and chatty. A boy who loved his food, his time in the water and his night-time books was now working so hard to get it all back. His eyes came back first, then some gross motor movement, and after many months, his words and some fine motor control. Fed only by a naso-gastric tube, Tom finally achieved his ability to swallow and was able to enjoy new tastes. His ability to sit and move continued to improve. His strength in transfers and self-propelling himself in his wheelchair 'Black Jack' was building every day. Our pride is in his consistent effort and bravery when faced with so many hurdles continues to grow. Thomas has been such an inspiration to all of those in his life and those following his journey.
In the months following chemotherapy, doctors were confused as to why Tom continued to suffer from vomiting that was starting to increase in intensity and frequency. He was losing weight and continued to be lethargic. In November 2018, Thomas suffered several days of distressing headaches that were cause for new concern. His post-treatment MRI was moved forward a couple of weeks. As parents we then were told the worst news we could have imagined. In just two months, his tumour had returned and was getting close to the size it was before. It's growth rate was extremely aggressive in comparison the pathology of his previous tumour. This was our greatest concern and we began to prepare ourselves for a repeat of 2018 as we headed towards the end of the year. Then we learned the tumour had brought with it many small tumours scattered throughout his brain and spine. Doctors advised us that Tom's returned cancer is not something that will respond to curative treatment. There is no stopping it - we can only hope to slow it's impact. We are now living with a terminal diagnosis that could give us anywhere between weeks to months with this glorious soul.
So this is where we are at. Our new plan is to engage with management chemotherapy drugs to slow the growth of the main tumour and get as much wonder and joy into each day we have left with our brave boy. We are keen to find the awesome in every day, every experience and every memory. Even though we as Tom's parents are divorced, we have been fortunate to find new supportive partners and therefore, Thomas enjoys double the love and double the support network. We have been very lucky to have amazing friends and family that have helped us navigate this very difficult road over the last year. We would like your help to give Tom a beautiful and magical period of time as his journey ends and to give us and his siblings as many memories to hold on to once his body rests from it's fight and he leaves us. Whatever adventure he asks for, we want to be able to say 'yes!' and some financial support will assist us in this goal. Thanks in advance for any generosity, any prayer and positive thought sent our way.
Thomas Beattie is a sweet, funny and very brave seven-year-old boy from Brisbane, Australia. He has a twin brother Cameron and a little sister, Lula. In Dec of 2017, doctors at Lady Cilento Children's Hospital discovered a large brain tumour in Tom's MRI. He had suffered from increasing fatigue, drowsiness and sporadic headaches over the previous few months and now we had our answer. A 5cm medulloblastoma tumour was situated adjacent to his brain stem and in the posterior fossa area, behind the cerebellum. This mass was blocking the pathway of Tom's cerebral spinal fluid (CSF) from draining into his spine and so he underwent emergency surgery to relieve the fluid build up in is his brain through the insertion of an external ventricle drain (EVD). Four days later, Thomas underwent his tumour resection procedure. Six hours of surgery resulted in what we thought was a complete removal of the tumour. A few days later he needed to have a shunt permanently implanted in his head to assist with the continued draining of his CSF. The following couple of weeks and months were harrowing though as we learnt of the impact of the tumour surgery on his brain.
Thomas came out of the surgery with Posterior Fossa Syndrome and throughout the year, we learnt that he was suffering from a very severe form of this type of brain injury. Thomas had a difficult journey ahead of him. He was to battle the possible return of his tumour with six weeks of radiotherapy and four rounds of chemotherapy. In and around this treatment Tom's brain also had to relocate the pathway to every muscle in his body. He had lost the ability to see, swallow, speak, sit, stand, walk or move any part of his body. His movements began to return but with no control. Once he had some control he had to find the nuance of control and build up muscle strength that he had lost after months of being bed and wheelchair bound.
Tom showed incredible resilience, determination, courage and patience as he fought every battle he was faced with. He endured having a general anaesthetic every day during his radiation regime. Thomas then suffered from constant vomiting and multiple infections as a result of his chemotherapy which meant he spent little time at home in the first six months of 2018. His rehabilitation was arduous and frustrating for a boy who was once so active, creative and chatty. A boy who loved his food, his time in the water and his night-time books was now working so hard to get it all back. His eyes came back first, then some gross motor movement, and after many months, his words and some fine motor control. Fed only by a naso-gastric tube, Tom finally achieved his ability to swallow and was able to enjoy new tastes. His ability to sit and move continued to improve. His strength in transfers and self-propelling himself in his wheelchair 'Black Jack' was building every day. Our pride is in his consistent effort and bravery when faced with so many hurdles continues to grow. Thomas has been such an inspiration to all of those in his life and those following his journey.
In the months following chemotherapy, doctors were confused as to why Tom continued to suffer from vomiting that was starting to increase in intensity and frequency. He was losing weight and continued to be lethargic. In November 2018, Thomas suffered several days of distressing headaches that were cause for new concern. His post-treatment MRI was moved forward a couple of weeks. As parents we then were told the worst news we could have imagined. In just two months, his tumour had returned and was getting close to the size it was before. It's growth rate was extremely aggressive in comparison the pathology of his previous tumour. This was our greatest concern and we began to prepare ourselves for a repeat of 2018 as we headed towards the end of the year. Then we learned the tumour had brought with it many small tumours scattered throughout his brain and spine. Doctors advised us that Tom's returned cancer is not something that will respond to curative treatment. There is no stopping it - we can only hope to slow it's impact. We are now living with a terminal diagnosis that could give us anywhere between weeks to months with this glorious soul.
So this is where we are at. Our new plan is to engage with management chemotherapy drugs to slow the growth of the main tumour and get as much wonder and joy into each day we have left with our brave boy. We are keen to find the awesome in every day, every experience and every memory. Even though we as Tom's parents are divorced, we have been fortunate to find new supportive partners and therefore, Thomas enjoys double the love and double the support network. We have been very lucky to have amazing friends and family that have helped us navigate this very difficult road over the last year. We would like your help to give Tom a beautiful and magical period of time as his journey ends and to give us and his siblings as many memories to hold on to once his body rests from it's fight and he leaves us. Whatever adventure he asks for, we want to be able to say 'yes!' and some financial support will assist us in this goal. Thanks in advance for any generosity, any prayer and positive thought sent our way.
Organizer
Trish Beattie
Organizer
Alexandra Hills QLD
