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- A
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Brian’s Story
Brian is the youngest of my three children. After being blessed with two children, Brooke and Brendan, we felt our family was complete. It was on Halloween of 1998 that we found out we’d be welcoming a third child into our lives: Brian. Although not planned, I immediately felt it was just meant to be and that this child would have something special about him.
Sure enough, as Brian’s personality began to develop, we began to see the magic that encompassed him everywhere he went. He was easy going, didn’t sweat the small stuff, and when he walked into a room, it would for sure light up.
Brian was as curious as they come, with a willingness to learn, and eagerness to explore. It was clear very early on that he had a strong love for and bond with animals and, especially, gravitated toward sea life. To this day his dream is to become a marine biologist.
While Brian’s mother is very small (and both Brian’s older siblings inherited her stature), Brian, was a different story from the beginning! We knew this kid would eventually dwarf me at 6’ tall. People would say to me, “This kid could play football!” Admittedly, I had a small dream that Brian would be 6’3”, 235 lbs., running a 4.4 forty, and playing middle linebacker for a top-tier college team. However, I usually replied to people talking about his “football stature” by telling them the story of Brian’s first soccer game at the age of 6.
I was coaching his team and when his opportunity came and that first ball went right by him I said, “Get the ball!” He looked up at me and said, “When’s snack?”
So that linebacker dream was done; but, then it’s easy to learn who your children are and have new dreams for their futures.
It was a certainty that Brian was blessed with a kind soul and funny sense of humor, which made it easy for him to make friends. Everyone liked Brian. He was the class clown but without the need to be the center of attention—he was just plain funny and a joy to be around.
Much to my surprise though, as Brian was entering 5th grade, he suddenly became interested in team sports (probably because his closest friends were all athletes). Although he had never played baseball, Brian decided to give it a try. He was a bit clumsy and slow, but had a naturally-sweet swing of the bat that showed promise. He began to progress so quickly that he was asked to move up to Majors in his second year even though he was a year younger than most of the kids. That didn’t really matter to Brian though, he was playing ball with his friends and that’s all he needed to show up to every practice and game with a smile on his face.
True to his jokester spirit, he often had everyone in stitches, including the coaches, on and off the field. I remember the coaches commenting on how Brian kept the whole team loose even when the games got tense.
While he got recruited to Majors, improved quickly, had that sweet swing and good form, he suffered his fair share of strikeouts at the plate and had slow infield hits when his swing did make contact. His progress was halting and something wasn’t clicking with his overall coordination. It was a few months later that I learned why his eye hand coordination was off and why we had always believed Brian to be on the clumsy side.
It was spring to late summer of 2012 when Brian starting showing some concerning signs of change off the field that seemed a bit more pronounced than his normal “clumsiness.” He would fall for no reason, but get up only to laugh it off, spill drinks or food while he was eating and blurt out words that made no sense at the time.
We decided to visit the doctor and check into this—normal growing awkwardness or something to be concerned about? Brian’s pediatrician asked some questions, performed some basic tests and had us immediately take Brian to our local emergency room for a CT scan. What had started as a concern had quickly escalated to an emergency. A feeling of uneasiness set in and then turned to heart-wrenching, all-encompassing fear as the ER doctor revealed that the CT scan results showed that Brian had an abnormal mass in his brain.
Without telling us much, they prepped Brian for an MRI. Just hours after leaving what we thought would be a quick check-up with his pediatrician, the MRI results in the ER confirmed our now-worst fears: the mass was in fact a tumor; an astrocytoma tumor, to be exact, in his brain stem. Brian was immediately admitted.
The next 36 hours were the worst hours of my life. I learned there are two types of astrocytoma tumors. One would take my son within 6 months and the other would allow him to live until he’s 80-90 years old. As the doctor uttered these words numbness settled into me. Either way, my youngest son’s life had just drastically and irrevocably changed. Thoughts swirled uncontrollably, ‘We might lose our Brian…’ and ‘…If he does fall into the second case of astrocytoma tumors, how will this mass in his brain stem affect him from here on out?’
I prayed and prayed and never left his side. The day that started off with what was supposed to be a quick doctor visit landed him instead immediately admitted into CHOC with teams of doctors deciding my son’s fate. He was to have an operation to remove the mass as quickly as possible.
News spread fast and Brian’s friend came to the hospital to visit with him over the next few days. It was a lot for 12-year-olds to handle—some did better than others—and, true to Brian’s personality, he continued to make jokes and have everyone laughing to ease the discomfort and cut through some of the fear and tension. As his father, I was so taken aback by how he could stay so convivial with his friends while under so much pressure, fear, confusion, stress and sadness.
It wasn’t until the night before his surgery that he finally asked me the question no parent should ever have to answer: “Am I going to die tomorrow?” Even today, 3 years later, I can still clearly see my 12-year-old son asking me that question, just the way he did, down to every minute detail and expressions on his face. I replied that night with, “God has great plans for you here; of course, you’re not going to die.”
I don’t want this story to be cast as a complete downer, because it is Brian’s story and Brian is still with us today—I thank God for that EVERY day. There is still a great deal of Brian’s story left to be told; most of which has yet to be written. Brian, now 16 year’s old, thankfully had the second type of astrocytoma tumor so we thankfully and luckily did not lose our youngest son at 12 years old. But, as with most serious childhood illnesses, there have been complicating and unresolved issues in the wake of his now multiple surgeries and procedures.
We were told the type of surgery Brian needed was the most difficult to perform cleanly due to the position of the tumor—there was no clear track to go in to be able to remove the tumor without cutting through brain tissue. We, of course, had no choice but to take this risk. After the first surgery, in trying to do as little damage to the surrounding brain tissue as possible, they found that they were unable to remove the tumor in its entirety. One week later, they needed to go in and perform a second surgery, which removed the majority of the remaining mass. Two months following the second surgery, they performed a Gamma Knife procedure, which uses beams of gamma rays to treat the remaining tumor without the need for surgical incision. Two months later, the doctor recommended that a shunt be placed where the remaining fluid was in the brain, which required two additional surgeries.
So although the doctors said that his age and years of development could give him the best chances for recovery, after having endured 4 brain surgeries, Brian is left in a handicapped state. His life has been changed drastically. He has marked penalization to his left side (unfortunate for him that he is naturally left handed); he needs the help of a walker to get around, cannot speak at a regular pace or speak clearly, and has difficulty with fine motors skills.
After 2 ½ years of countless hours of therapy, training and encouragement, Brian has shown some improvement; but, ultimately, he’s paid a devastating price during his young, socially crucial teenage years and it has taken a toll. His setbacks have taken the wind out of his sails, the jokester out of his demeanor, the natural smile now not so natural or common anymore. It is hard to joke when your friends can barely understand what you are trying to say. It’s hard to socialize, when all your friends are athletes and are outside riding around on skateboards or out throwing footballs around, etc.
During the past 3 years (surgery through rehab) his friends have been kind, true and understanding; however, Brian has had to stand on the sidelines watching his closest peers celebrating life through the rights of passage most every teenager experiences: High School sports, High School trips, dating, and, of course, getting their drivers licenses. Driving a car, passing that all important test: the exhilarating thrill of teenage independence that he cannot share nor revel in Facebook or Instagram posts riddle his social networking scene. He is happy for his friends, but what teenager would not experience sadness after loss after loss after loss?
Over the past 6-8 months, Brian has found himself in a deep funk; so bad that we decided to get him professional help by admitting him to a hospital for a short period of time. We hoped that this could jump start his mental health back to a point where he would be ready to get back into the recovery fight.
Over the past 2 years I have educated myself about recovery from brain stem surgery and I came across something I feel could have great promise to help Brian with his recovery and at the very least help him overcome his current struggles.
I have investigated a hospital out of the country that performs treatments with the use of stem cells. I’ve poured through their research focusing on nerve rejuvenation. Without going into too much detail, there are essentially three types of nerve damage that their research and treatment is focusing on: total nerve separation (like what Christopher Reeves suffered from during a fall from a horse), nerve damage from carpel tunnel and other degenerative disorders, and damage due to certain brain surgeries. Brian’s, of course, falls into the brain surgery category.
Here you can read just one example of how fast stem cell research in regards to brain tumors has progressed in just a short time:
https://www.cirm.ca.gov/our-progress/disease-information/brain-tumor-fact-sheet
How I initially found out about this is through a friend whose son has MS and began this treatment. At just 30 days in, he has noticed great improvement and freedom—making more progress in 30 days than he’d had in over 3 years.
I would really like to give my son an opportunity to get his freedom back.
Brian has shown interest and excitement over the past month in going to get this procedure done, like I used to see in him prior to his surgery.
Additionally, his physical therapist and psychiatrist recommend that a companion dog would greatly help his ability to walk and greatly lift his spirits.
So here’s where I ask your assistance in helping Brian’s story continue as he had dreamed it could be as a child.
After four surgeries, post medical expenses, stem cell treatment trip, and cost for the highly trained companion dog is now beyond my grasp. The longer Brian waits for anything that can help his recovery, the less effective his overall recovery can be.
This trip, along with walkers that have been recommended for Brian due to his instability as of late, plus the companion dog combined cost is $35,000.
I have such a hard time asking for help from others, but this is to help my youngest son, and so I am asking. If you were thinking of helping, any amount will be immensely appreciated.
The one other thing I will ask is please pray for Brian and forward this message to at least ten people including family, friends, coworkers, acquaintances, colleagues and/or anyone who may be interested...for his sake. The more I get Brian’s story out, the more support he will possibly receive.
Thank you so much for taking the time to read Brian’s Story.
Brian is the youngest of my three children. After being blessed with two children, Brooke and Brendan, we felt our family was complete. It was on Halloween of 1998 that we found out we’d be welcoming a third child into our lives: Brian. Although not planned, I immediately felt it was just meant to be and that this child would have something special about him.
Sure enough, as Brian’s personality began to develop, we began to see the magic that encompassed him everywhere he went. He was easy going, didn’t sweat the small stuff, and when he walked into a room, it would for sure light up.
Brian was as curious as they come, with a willingness to learn, and eagerness to explore. It was clear very early on that he had a strong love for and bond with animals and, especially, gravitated toward sea life. To this day his dream is to become a marine biologist.
While Brian’s mother is very small (and both Brian’s older siblings inherited her stature), Brian, was a different story from the beginning! We knew this kid would eventually dwarf me at 6’ tall. People would say to me, “This kid could play football!” Admittedly, I had a small dream that Brian would be 6’3”, 235 lbs., running a 4.4 forty, and playing middle linebacker for a top-tier college team. However, I usually replied to people talking about his “football stature” by telling them the story of Brian’s first soccer game at the age of 6.
I was coaching his team and when his opportunity came and that first ball went right by him I said, “Get the ball!” He looked up at me and said, “When’s snack?”
So that linebacker dream was done; but, then it’s easy to learn who your children are and have new dreams for their futures.
It was a certainty that Brian was blessed with a kind soul and funny sense of humor, which made it easy for him to make friends. Everyone liked Brian. He was the class clown but without the need to be the center of attention—he was just plain funny and a joy to be around.
Much to my surprise though, as Brian was entering 5th grade, he suddenly became interested in team sports (probably because his closest friends were all athletes). Although he had never played baseball, Brian decided to give it a try. He was a bit clumsy and slow, but had a naturally-sweet swing of the bat that showed promise. He began to progress so quickly that he was asked to move up to Majors in his second year even though he was a year younger than most of the kids. That didn’t really matter to Brian though, he was playing ball with his friends and that’s all he needed to show up to every practice and game with a smile on his face.
True to his jokester spirit, he often had everyone in stitches, including the coaches, on and off the field. I remember the coaches commenting on how Brian kept the whole team loose even when the games got tense.
While he got recruited to Majors, improved quickly, had that sweet swing and good form, he suffered his fair share of strikeouts at the plate and had slow infield hits when his swing did make contact. His progress was halting and something wasn’t clicking with his overall coordination. It was a few months later that I learned why his eye hand coordination was off and why we had always believed Brian to be on the clumsy side.
It was spring to late summer of 2012 when Brian starting showing some concerning signs of change off the field that seemed a bit more pronounced than his normal “clumsiness.” He would fall for no reason, but get up only to laugh it off, spill drinks or food while he was eating and blurt out words that made no sense at the time.
We decided to visit the doctor and check into this—normal growing awkwardness or something to be concerned about? Brian’s pediatrician asked some questions, performed some basic tests and had us immediately take Brian to our local emergency room for a CT scan. What had started as a concern had quickly escalated to an emergency. A feeling of uneasiness set in and then turned to heart-wrenching, all-encompassing fear as the ER doctor revealed that the CT scan results showed that Brian had an abnormal mass in his brain.
Without telling us much, they prepped Brian for an MRI. Just hours after leaving what we thought would be a quick check-up with his pediatrician, the MRI results in the ER confirmed our now-worst fears: the mass was in fact a tumor; an astrocytoma tumor, to be exact, in his brain stem. Brian was immediately admitted.
The next 36 hours were the worst hours of my life. I learned there are two types of astrocytoma tumors. One would take my son within 6 months and the other would allow him to live until he’s 80-90 years old. As the doctor uttered these words numbness settled into me. Either way, my youngest son’s life had just drastically and irrevocably changed. Thoughts swirled uncontrollably, ‘We might lose our Brian…’ and ‘…If he does fall into the second case of astrocytoma tumors, how will this mass in his brain stem affect him from here on out?’
I prayed and prayed and never left his side. The day that started off with what was supposed to be a quick doctor visit landed him instead immediately admitted into CHOC with teams of doctors deciding my son’s fate. He was to have an operation to remove the mass as quickly as possible.
News spread fast and Brian’s friend came to the hospital to visit with him over the next few days. It was a lot for 12-year-olds to handle—some did better than others—and, true to Brian’s personality, he continued to make jokes and have everyone laughing to ease the discomfort and cut through some of the fear and tension. As his father, I was so taken aback by how he could stay so convivial with his friends while under so much pressure, fear, confusion, stress and sadness.
It wasn’t until the night before his surgery that he finally asked me the question no parent should ever have to answer: “Am I going to die tomorrow?” Even today, 3 years later, I can still clearly see my 12-year-old son asking me that question, just the way he did, down to every minute detail and expressions on his face. I replied that night with, “God has great plans for you here; of course, you’re not going to die.”
I don’t want this story to be cast as a complete downer, because it is Brian’s story and Brian is still with us today—I thank God for that EVERY day. There is still a great deal of Brian’s story left to be told; most of which has yet to be written. Brian, now 16 year’s old, thankfully had the second type of astrocytoma tumor so we thankfully and luckily did not lose our youngest son at 12 years old. But, as with most serious childhood illnesses, there have been complicating and unresolved issues in the wake of his now multiple surgeries and procedures.
We were told the type of surgery Brian needed was the most difficult to perform cleanly due to the position of the tumor—there was no clear track to go in to be able to remove the tumor without cutting through brain tissue. We, of course, had no choice but to take this risk. After the first surgery, in trying to do as little damage to the surrounding brain tissue as possible, they found that they were unable to remove the tumor in its entirety. One week later, they needed to go in and perform a second surgery, which removed the majority of the remaining mass. Two months following the second surgery, they performed a Gamma Knife procedure, which uses beams of gamma rays to treat the remaining tumor without the need for surgical incision. Two months later, the doctor recommended that a shunt be placed where the remaining fluid was in the brain, which required two additional surgeries.
So although the doctors said that his age and years of development could give him the best chances for recovery, after having endured 4 brain surgeries, Brian is left in a handicapped state. His life has been changed drastically. He has marked penalization to his left side (unfortunate for him that he is naturally left handed); he needs the help of a walker to get around, cannot speak at a regular pace or speak clearly, and has difficulty with fine motors skills.
After 2 ½ years of countless hours of therapy, training and encouragement, Brian has shown some improvement; but, ultimately, he’s paid a devastating price during his young, socially crucial teenage years and it has taken a toll. His setbacks have taken the wind out of his sails, the jokester out of his demeanor, the natural smile now not so natural or common anymore. It is hard to joke when your friends can barely understand what you are trying to say. It’s hard to socialize, when all your friends are athletes and are outside riding around on skateboards or out throwing footballs around, etc.
During the past 3 years (surgery through rehab) his friends have been kind, true and understanding; however, Brian has had to stand on the sidelines watching his closest peers celebrating life through the rights of passage most every teenager experiences: High School sports, High School trips, dating, and, of course, getting their drivers licenses. Driving a car, passing that all important test: the exhilarating thrill of teenage independence that he cannot share nor revel in Facebook or Instagram posts riddle his social networking scene. He is happy for his friends, but what teenager would not experience sadness after loss after loss after loss?
Over the past 6-8 months, Brian has found himself in a deep funk; so bad that we decided to get him professional help by admitting him to a hospital for a short period of time. We hoped that this could jump start his mental health back to a point where he would be ready to get back into the recovery fight.
Over the past 2 years I have educated myself about recovery from brain stem surgery and I came across something I feel could have great promise to help Brian with his recovery and at the very least help him overcome his current struggles.
I have investigated a hospital out of the country that performs treatments with the use of stem cells. I’ve poured through their research focusing on nerve rejuvenation. Without going into too much detail, there are essentially three types of nerve damage that their research and treatment is focusing on: total nerve separation (like what Christopher Reeves suffered from during a fall from a horse), nerve damage from carpel tunnel and other degenerative disorders, and damage due to certain brain surgeries. Brian’s, of course, falls into the brain surgery category.
Here you can read just one example of how fast stem cell research in regards to brain tumors has progressed in just a short time:
https://www.cirm.ca.gov/our-progress/disease-information/brain-tumor-fact-sheet
How I initially found out about this is through a friend whose son has MS and began this treatment. At just 30 days in, he has noticed great improvement and freedom—making more progress in 30 days than he’d had in over 3 years.
I would really like to give my son an opportunity to get his freedom back.
Brian has shown interest and excitement over the past month in going to get this procedure done, like I used to see in him prior to his surgery.
Additionally, his physical therapist and psychiatrist recommend that a companion dog would greatly help his ability to walk and greatly lift his spirits.
So here’s where I ask your assistance in helping Brian’s story continue as he had dreamed it could be as a child.
After four surgeries, post medical expenses, stem cell treatment trip, and cost for the highly trained companion dog is now beyond my grasp. The longer Brian waits for anything that can help his recovery, the less effective his overall recovery can be.
This trip, along with walkers that have been recommended for Brian due to his instability as of late, plus the companion dog combined cost is $35,000.
I have such a hard time asking for help from others, but this is to help my youngest son, and so I am asking. If you were thinking of helping, any amount will be immensely appreciated.
The one other thing I will ask is please pray for Brian and forward this message to at least ten people including family, friends, coworkers, acquaintances, colleagues and/or anyone who may be interested...for his sake. The more I get Brian’s story out, the more support he will possibly receive.
Thank you so much for taking the time to read Brian’s Story.
Organizer and beneficiary
Dan Morgan
Beneficiary