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I’m writing this on behalf of my father, Steven Long, who was diagnosed with glioblastoma multiforme (GBM) in May 2019. Here is a little background to his story. If you’d rather skip to the most recent update feel free to jump ahead to the last paragraphs.
Steven had been shuffling when he walked for some time and experiencing extreme fatigue, but when he started having some vision issues that made driving difficult, as well as some confusion, a trip to the ER was warranted. What we thought was a possible stroke turned into something worse than we could have imagined- brain cancer. Grade 4 Glioblastoma Multiforme.
My parents have been in a whirlwind ever since receiving the diagnosis. Because of the aggressive nature of GBM, the surgeons wanted to perform brain surgery the next day to remove what they could. My parents barely had time to process any of it or even know how to tell their kids and their family. My dad underwent 2 back to back surgeries that week to remove as much cancer as they could. He recovered marvelously and felt more energy than he had in months.
After his scalp healed he underwent 6 weeks of radiation and chemo therapies, and was taking very strong chemo each month. Unfortunately, after all of this, his MRI post radiation and first round of chemo showed regrowth, now in a location deemed inoperable.
The prognosis for GBM is grim... doctors will barely give him an answer for it when he asks. A quick google search will tell you that, on average, with treatment, most over the age of 50 will not make it 1 year.
But we have hope. We have faith in God and we know He answers prayers. Thankfully, my dad was strong and healthy before he began this journey, and has been tolerating treatment so well with minimal nausea. His biggest complaint is fatigue.
Since diagnosis my dad has not been able to return to work. He cannot drive. His vision is severely affected. All of this has affected his confidence- I can see it in how he walks. In how he talks and carries himself. He was the one who managed the household and had all the answers. Now he needs help with many everyday tasks and his worries are endless. We are all trying to keep his spirits up, but it has obviously been a huge change of lifestyle, not just for him but also for my mom and the whole family.
My dad was the sole provider for the family. Once on disability, his paycheck will be cut in half. GBM has no cure but there are some promising studies with naturopathic options and experimental drugs. However, these are out of pocket expenses.
My dad was seeing speech, occupational and physical therapists after surgery by the insistence of his doctors. Insurance has deemed these unnecessary and will not fully cover them. We know these will help give him more confidence and independence, but he’s had to stop the sessions since insurance will not cover.
The standard of care for GBM is not enough. We are hoping to fight this cancer with all we’ve got. We will try everything. We’ve read stories of long term survivors, and we think “why not us?” We will keep fighting and fighting for our dad, even when he doesn’t have the energy or ability to do so himself.
Update:
It’s now been a year since my dad’s diagnosis, and he is rapidly declining. He needs help with even the smallest tasks and is in a constant state of discomfort and anxiety. He needs constant care, and it is more than my mom, brother, and uncle can provide to him on their own at home.
After many months, the painful decision was made to start my dad on hospice care. Fortunately he will be able to stay at home, at least for now, and receive the medication he needs to be comfortable and at peace. We will be implementing in-home care also, to have someone who is able to stay with him through the night, so my mother can get some rest.
This is all out of pocket and is going to add up extremely quickly. Please consider helping in any way you can so we can give my mom, brother, and uncle some relief from his constant care and some comfort for my dad so we can enjoy him for whatever time left God gives us. He is currently in the hospital while they work on medication management and finding what he responds best to. We expect him to be home by the end of April, and would like to have in-home care ready to start as soon as he comes home from the hospital.
Just for overnight care, it’s going to cost $1000/week. My goal for this fundraiser is to get them at least 6 months of care, so $24,000, which my mom could use to cover any costs of my dad's care that are out of pocket.
Please help ease the burden on my mom and dad and consider donating whatever you can, and please keep us in your prayers as we continue to fight and kick this cancer’s butt!
God bless and thank you!
Kathryn Long and family
Steven had been shuffling when he walked for some time and experiencing extreme fatigue, but when he started having some vision issues that made driving difficult, as well as some confusion, a trip to the ER was warranted. What we thought was a possible stroke turned into something worse than we could have imagined- brain cancer. Grade 4 Glioblastoma Multiforme.
My parents have been in a whirlwind ever since receiving the diagnosis. Because of the aggressive nature of GBM, the surgeons wanted to perform brain surgery the next day to remove what they could. My parents barely had time to process any of it or even know how to tell their kids and their family. My dad underwent 2 back to back surgeries that week to remove as much cancer as they could. He recovered marvelously and felt more energy than he had in months.
After his scalp healed he underwent 6 weeks of radiation and chemo therapies, and was taking very strong chemo each month. Unfortunately, after all of this, his MRI post radiation and first round of chemo showed regrowth, now in a location deemed inoperable.
The prognosis for GBM is grim... doctors will barely give him an answer for it when he asks. A quick google search will tell you that, on average, with treatment, most over the age of 50 will not make it 1 year.
But we have hope. We have faith in God and we know He answers prayers. Thankfully, my dad was strong and healthy before he began this journey, and has been tolerating treatment so well with minimal nausea. His biggest complaint is fatigue.
Since diagnosis my dad has not been able to return to work. He cannot drive. His vision is severely affected. All of this has affected his confidence- I can see it in how he walks. In how he talks and carries himself. He was the one who managed the household and had all the answers. Now he needs help with many everyday tasks and his worries are endless. We are all trying to keep his spirits up, but it has obviously been a huge change of lifestyle, not just for him but also for my mom and the whole family.
My dad was the sole provider for the family. Once on disability, his paycheck will be cut in half. GBM has no cure but there are some promising studies with naturopathic options and experimental drugs. However, these are out of pocket expenses.
My dad was seeing speech, occupational and physical therapists after surgery by the insistence of his doctors. Insurance has deemed these unnecessary and will not fully cover them. We know these will help give him more confidence and independence, but he’s had to stop the sessions since insurance will not cover.
The standard of care for GBM is not enough. We are hoping to fight this cancer with all we’ve got. We will try everything. We’ve read stories of long term survivors, and we think “why not us?” We will keep fighting and fighting for our dad, even when he doesn’t have the energy or ability to do so himself.
Update:
It’s now been a year since my dad’s diagnosis, and he is rapidly declining. He needs help with even the smallest tasks and is in a constant state of discomfort and anxiety. He needs constant care, and it is more than my mom, brother, and uncle can provide to him on their own at home.
After many months, the painful decision was made to start my dad on hospice care. Fortunately he will be able to stay at home, at least for now, and receive the medication he needs to be comfortable and at peace. We will be implementing in-home care also, to have someone who is able to stay with him through the night, so my mother can get some rest.
This is all out of pocket and is going to add up extremely quickly. Please consider helping in any way you can so we can give my mom, brother, and uncle some relief from his constant care and some comfort for my dad so we can enjoy him for whatever time left God gives us. He is currently in the hospital while they work on medication management and finding what he responds best to. We expect him to be home by the end of April, and would like to have in-home care ready to start as soon as he comes home from the hospital.
Just for overnight care, it’s going to cost $1000/week. My goal for this fundraiser is to get them at least 6 months of care, so $24,000, which my mom could use to cover any costs of my dad's care that are out of pocket.
Please help ease the burden on my mom and dad and consider donating whatever you can, and please keep us in your prayers as we continue to fight and kick this cancer’s butt!
God bless and thank you!
Kathryn Long and family
Organizer and beneficiary
Isabel Long
Beneficiary