RHS in NS
We have a Tomorrow
Conner's progress...
Thank you for all the wonderful messages of support. Some of your stories have moved us and given us both hope and support.
Now some of our questions have been answered and his grandparents updated, I can share the wonderful progress to date.
We aren't out of the woods yet but all indications are that Conner is making amazing progress.
The large tumour that was initially found is significantly smaller than it was. It is still there but the targeted radiation is effectively an intentional brain injury that is meant to damage the tumour permanently so those cells are unable to regenerate over time. Effectively a stone in his head which is all scar tissue/a dead mass with no active cancerous cells.
While there is no radiation in his body now, because those radiation damaged cells can't regrow, like any other scar it is expected that it will shrink in time but might not ever fully disappear.
The void in his head which was previously occupied by the full size tumour will always be there. Like removing a stone from a peach, the void remains. Due to this missing part of Conner's brain, his on going checks will include MRI's, visual field checks and also neurological testing. In the event of a brain injury, it's not uncommon for other parts of the brain to take over the function that the damaged part used to control. Signs of this are already happening in Conner.
Short term, he will be monitored very closely for any signs of new cancer growing in the void or any other part of his brain, to see if this tumour does shrink more and to document whatever size it ultimately ends up as being, to ensure that neurologically the brain damage isn't affecting him negatively and to make sure that the tumour remains without an active growth. We already knew that it would take up to 4 months to begin to feel normal so considering radiation didn't complete until 17th Feb., it's amazing that he's now in his third week of being back to work. The tiredness will likely continue, although lessen, for up to 10 months although he'll be able to recognise the difference between radiation tiredness and regular tiredness. He will be checked every three months for the first year or so with clear instructions that any changes to personality, ability, speech, mean heading directly to hospital.
The area of numbness on his scalp might recover in time or he might never regain feeling in that part of his scalp. Essentially it was caused by the emergency surgery and the need to sever the nerves when they peeled back his scalp and face to access his brain. Sometimes those nerves reconnect and sometimes they don't. He just has to be mindful not to bang his head as he won't feel it and won't realize if it's a serious injury. He also has to learn to visually check his head each day in case he's banged it and a bruise or cut is the only indication that he's done so.
Long term, there might be indications where he's not as fully functioning as he was - delayed responses, slower reactions but likely only those who know him really well would ever be able to tell. He has a life time ban on all contact sports and any accident which might result in concussion will require a visit to emergency even if he thinks he's unhurt. As someone who has undergone radiation treatment, he is higher risk of getting a secondary cancer now so the frequent checks will also provide a means for watching for that.
For now, we wait. He takes time to heal and recover from the massive trauma his brain has undergone through treatment and we will see in time what size the tumour will end up in being and if there's any long lasting effects of killing off that part of his brain.
But his hair has begun to grow back. These last couple weeks it's gone from nothing, to a blonde peach fuzz and now it's beginning to darken. It's growing back all over his head although it really fine and thin at the moment. But he's hoping it will come back in as it used to be.
Latest brain scan - Tumour as it was the day it was found (22-Dec-2016) vs most recent MRI image (01-May-2017).
We have been incredibly lucky and didn't realize until recently just how close we came to losing him. Our neurosurgeon confessed that the Tumour Board didn't think that he'd make it to February which was very sobering to learn.
Conner now impatiently awaits the arrival of his passport so he can go and visit his grandparents in the UK and be spoiled for a few weeks. First trip home since 2006.
We have a Tomorrow
Conner's progress...
Thank you for all the wonderful messages of support. Some of your stories have moved us and given us both hope and support.
Now some of our questions have been answered and his grandparents updated, I can share the wonderful progress to date.
We aren't out of the woods yet but all indications are that Conner is making amazing progress.
The large tumour that was initially found is significantly smaller than it was. It is still there but the targeted radiation is effectively an intentional brain injury that is meant to damage the tumour permanently so those cells are unable to regenerate over time. Effectively a stone in his head which is all scar tissue/a dead mass with no active cancerous cells.
While there is no radiation in his body now, because those radiation damaged cells can't regrow, like any other scar it is expected that it will shrink in time but might not ever fully disappear.
The void in his head which was previously occupied by the full size tumour will always be there. Like removing a stone from a peach, the void remains. Due to this missing part of Conner's brain, his on going checks will include MRI's, visual field checks and also neurological testing. In the event of a brain injury, it's not uncommon for other parts of the brain to take over the function that the damaged part used to control. Signs of this are already happening in Conner.
Short term, he will be monitored very closely for any signs of new cancer growing in the void or any other part of his brain, to see if this tumour does shrink more and to document whatever size it ultimately ends up as being, to ensure that neurologically the brain damage isn't affecting him negatively and to make sure that the tumour remains without an active growth. We already knew that it would take up to 4 months to begin to feel normal so considering radiation didn't complete until 17th Feb., it's amazing that he's now in his third week of being back to work. The tiredness will likely continue, although lessen, for up to 10 months although he'll be able to recognise the difference between radiation tiredness and regular tiredness. He will be checked every three months for the first year or so with clear instructions that any changes to personality, ability, speech, mean heading directly to hospital.
The area of numbness on his scalp might recover in time or he might never regain feeling in that part of his scalp. Essentially it was caused by the emergency surgery and the need to sever the nerves when they peeled back his scalp and face to access his brain. Sometimes those nerves reconnect and sometimes they don't. He just has to be mindful not to bang his head as he won't feel it and won't realize if it's a serious injury. He also has to learn to visually check his head each day in case he's banged it and a bruise or cut is the only indication that he's done so.
Long term, there might be indications where he's not as fully functioning as he was - delayed responses, slower reactions but likely only those who know him really well would ever be able to tell. He has a life time ban on all contact sports and any accident which might result in concussion will require a visit to emergency even if he thinks he's unhurt. As someone who has undergone radiation treatment, he is higher risk of getting a secondary cancer now so the frequent checks will also provide a means for watching for that.
For now, we wait. He takes time to heal and recover from the massive trauma his brain has undergone through treatment and we will see in time what size the tumour will end up in being and if there's any long lasting effects of killing off that part of his brain.
But his hair has begun to grow back. These last couple weeks it's gone from nothing, to a blonde peach fuzz and now it's beginning to darken. It's growing back all over his head although it really fine and thin at the moment. But he's hoping it will come back in as it used to be.
Latest brain scan - Tumour as it was the day it was found (22-Dec-2016) vs most recent MRI image (01-May-2017).
We have been incredibly lucky and didn't realize until recently just how close we came to losing him. Our neurosurgeon confessed that the Tumour Board didn't think that he'd make it to February which was very sobering to learn.
Conner now impatiently awaits the arrival of his passport so he can go and visit his grandparents in the UK and be spoiled for a few weeks. First trip home since 2006.