#teambreed Waiting on a Miracle GBM
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Gord Downie, Gene Siskel, Ted Kennedy, George Gershwin are just a few of the thousands that were and are diagnosed every year with Brain tumours.
It is with much soul searching and trepidation that we once again find ourselves sinking daily in our fight for Kevin's wellness and have to ask for outside assistance financially to help us at this time.
Kevin was diagnosed with Glioblastoma Multiforme April 2015 and after one round of chemotherapy and radiation and suffering a seizure the doctors gave us the prognosis, 3 months. Guess what? 14 months since diagnosis and he is still fighting everyday!
As I am sure most of you know, Kevin had 6 seizures on April 10th 2016. The reason that this happened is because the tumour that is sitting on the corpus callosum has once again started to grow. Because of the placement of this tumour it is a gateway for full tonic/clonic seizures. The seizure may start on one side of the brain but is easily transferred to the other side directly because of this tumour. Princess Margaret Cancer Center could not allow Kevin in the clinical trial at this time because of significant memory loss. One has to be able to consent to the trial and as of right now Kevin is not competant to make that decision.
He has started on a high dose chemotherapy 5/23 and will remain on this for as long as 12 months or until it stops working. As of today Dr Keragan is starting Kevin on a medication to help with memory. This drug is mainly used by people with Alzheimer's. They feel Kevin might very well benefit from this. We recently were told about yet another drug that was requested by Kevins doctors to help slow the growth of this tumour, but we are then told Kevin had actually been refused this drug due to the fact that the pharmaceutical company (Roche Pharmaceuticals) will not cover this drug in Ontario. If we lived in another province it is paid for completely, just not Ontario. This particular drug should be a last resort because once this drug has been taken you no longer are a candidate for any clinical trials or treatments. It carries a whopping cost of $4000.00 per injection every 3 weeks. So for now we are counting on the chemotherapy to buy us as much time as we can.
At this moment in time, I find myself numb! It’s as if I am standing on railroad tracks with a locomotive barreling toward me, I can't stop it or move, so I'm constantly bracing for impact. I want to wake up one day and be told this was all a bad joke. I pray for this, although I am very sure that this day will never come.
Short term plans for our future are few but non the less we do have plans! Our dearest friend Magda is going to come by this month and take a few photos for Kev and I. We are looking forward to that immensely. This lady has seen us through our Wedding day our anniversary and now a lifetime keepsake photo session. We love you dearly Magda ❤️
Secondly, as I'm sure you have all heard by now, one of Canada's most beloved poets, singer, songwriter Gord Downie was diagnosed in December with glioblastoma multiforme. The Tragically Hip are doing one last tour and Hamilton is on their list for August. Depending on Kevin's physical condition at the time I want to take him to that concert. If I do nothing else, I want Kevin to be inspired and entertained and forget all this ugliness in his life even if it's only for a couple of hours.
Simple things like taking a walk around the block are proving to take every bit of energy that Kevin has. What we have taken for granted all these years, has become a stumbling block for him now.
This disease is a monster, leaving chaos, struggle, grief and loss in its wake. We need help, we cannot do this alone! "No man is an island unto himself" we are no different!
Kevin is on a laundry list of supplements to support his liver, red & white blood cells, immune system, muscles and many other things to support his well being during his chemotherapy and extended steriod use. These things cost upwards of $1000 a month. We feel these supplements are the reason Kevin has been able to beat his prognosis and been able to fight as hard as he has. We have set the house up with rental equipment to make his day to day life easier. Bed rails, showering aids, etc. All things that are free for the first month and then you are charge for every month there after. It's adding up and it's adding up quickly! After keeping a roof over our head, car insurance and Kevin's expenses not covered we are sinking deeper and deeper every month.
At this time we ask for any support that can be offered. This is no one's enjoyable pass time to ask for help, but we are left no choice. If you have ever thought about donating to a cause we would be forever grateful. Any amount, no matter how big or small would be greatly appreciated! I pray to God that no one ever has to live this nightmare that we are entangled in but that would be unreasonable to even think, because unfortunately there will be more, many more!!! Glioblastoma has taken our innocence, our peace, our life as we once knew it.
Please support our warrior, he needs to know that people are behind him and that there is hope and he will have a tomorrow. We need him in our tomorrow's!
#gorddowniefightthefight #glioblastomamultiforme #everydaysagooddaytobealive #remembermywarrior #godhavemercy #stillfighting #cancersucks #prayforus
It is with much soul searching and trepidation that we once again find ourselves sinking daily in our fight for Kevin's wellness and have to ask for outside assistance financially to help us at this time.
Kevin was diagnosed with Glioblastoma Multiforme April 2015 and after one round of chemotherapy and radiation and suffering a seizure the doctors gave us the prognosis, 3 months. Guess what? 14 months since diagnosis and he is still fighting everyday!
As I am sure most of you know, Kevin had 6 seizures on April 10th 2016. The reason that this happened is because the tumour that is sitting on the corpus callosum has once again started to grow. Because of the placement of this tumour it is a gateway for full tonic/clonic seizures. The seizure may start on one side of the brain but is easily transferred to the other side directly because of this tumour. Princess Margaret Cancer Center could not allow Kevin in the clinical trial at this time because of significant memory loss. One has to be able to consent to the trial and as of right now Kevin is not competant to make that decision.
He has started on a high dose chemotherapy 5/23 and will remain on this for as long as 12 months or until it stops working. As of today Dr Keragan is starting Kevin on a medication to help with memory. This drug is mainly used by people with Alzheimer's. They feel Kevin might very well benefit from this. We recently were told about yet another drug that was requested by Kevins doctors to help slow the growth of this tumour, but we are then told Kevin had actually been refused this drug due to the fact that the pharmaceutical company (Roche Pharmaceuticals) will not cover this drug in Ontario. If we lived in another province it is paid for completely, just not Ontario. This particular drug should be a last resort because once this drug has been taken you no longer are a candidate for any clinical trials or treatments. It carries a whopping cost of $4000.00 per injection every 3 weeks. So for now we are counting on the chemotherapy to buy us as much time as we can.
At this moment in time, I find myself numb! It’s as if I am standing on railroad tracks with a locomotive barreling toward me, I can't stop it or move, so I'm constantly bracing for impact. I want to wake up one day and be told this was all a bad joke. I pray for this, although I am very sure that this day will never come.
Short term plans for our future are few but non the less we do have plans! Our dearest friend Magda is going to come by this month and take a few photos for Kev and I. We are looking forward to that immensely. This lady has seen us through our Wedding day our anniversary and now a lifetime keepsake photo session. We love you dearly Magda ❤️
Secondly, as I'm sure you have all heard by now, one of Canada's most beloved poets, singer, songwriter Gord Downie was diagnosed in December with glioblastoma multiforme. The Tragically Hip are doing one last tour and Hamilton is on their list for August. Depending on Kevin's physical condition at the time I want to take him to that concert. If I do nothing else, I want Kevin to be inspired and entertained and forget all this ugliness in his life even if it's only for a couple of hours.
Simple things like taking a walk around the block are proving to take every bit of energy that Kevin has. What we have taken for granted all these years, has become a stumbling block for him now.
This disease is a monster, leaving chaos, struggle, grief and loss in its wake. We need help, we cannot do this alone! "No man is an island unto himself" we are no different!
Kevin is on a laundry list of supplements to support his liver, red & white blood cells, immune system, muscles and many other things to support his well being during his chemotherapy and extended steriod use. These things cost upwards of $1000 a month. We feel these supplements are the reason Kevin has been able to beat his prognosis and been able to fight as hard as he has. We have set the house up with rental equipment to make his day to day life easier. Bed rails, showering aids, etc. All things that are free for the first month and then you are charge for every month there after. It's adding up and it's adding up quickly! After keeping a roof over our head, car insurance and Kevin's expenses not covered we are sinking deeper and deeper every month.
At this time we ask for any support that can be offered. This is no one's enjoyable pass time to ask for help, but we are left no choice. If you have ever thought about donating to a cause we would be forever grateful. Any amount, no matter how big or small would be greatly appreciated! I pray to God that no one ever has to live this nightmare that we are entangled in but that would be unreasonable to even think, because unfortunately there will be more, many more!!! Glioblastoma has taken our innocence, our peace, our life as we once knew it.
Please support our warrior, he needs to know that people are behind him and that there is hope and he will have a tomorrow. We need him in our tomorrow's!
#gorddowniefightthefight #glioblastomamultiforme #everydaysagooddaytobealive #remembermywarrior #godhavemercy #stillfighting #cancersucks #prayforus
Organizer
Donna Smith
Organizer
Hamilton , ON