Jon Brown's Transplant Story
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Jon Brown was born with Sickle Cell Anemia. It’s a chronically painful genetic red blood cell disorder that is normally a terminal illness. Death usually occurs between the ages of 30 and 40. Jon had a bone marrow transplant in 2014, he was 25 at the time, in an attempt to save his life. His illness had progressed to the point that he was in the hospital almost weekly and the pain of each crisis seemed almost unbearable. The transplant was a last dish effort to save him. Because of the havoc the illness had already wreaked on his body, the process resulted in major, major post-transplant complications and recently a total hip replacement. We are starting this campaign to help him to continue to have a second chance at life. This is Jon's story.
Jon was born in August of 1989. He was diagnosed with Sickle Cell Anemia very soon after birth. Sickle cell is a red blood cell disorder that inhibits oxygen flow and circulation. It wreaks havoc and pain in the body. Red blood cells, irregularly shaped, cluster, and clog up and quite often damage organs, cause painful crisis episodes and quite often can cause death. These episodes are called a Sickle Cell Crisis.
Jon’s sickle cell crisis scenarios sometimes involved hand pain, knee pain, elbow pain, feet pain, back pain, or a chest pain crisis. Sometimes there were combinations. A chest pain crisis was a serious event and usually morphed into pneumonia. An acute chest pain syndrome occurred every once in a while which was caused by sickling in the lungs. This syndrome would usually lead to respiratory problems and lung infections. Many times In order to keep Jon’s sickle cell levels low, or get his blood back to the right counts and levels, he was required to get numerous blood transfusions fairly often, particularly during hospitalizations.
Jon had lots and lots of transfusions and many emergency room or hospital visits. I remember crying when Jon, at age 3, had his head and body held down, and he screamed uncontrollably as they stuck a large needle in his back to do a spinal tap. I felt helpless.
Jon’s physical activity had limitations. Jon couldn’t play in the snow or play basketball or baseball outside in the summer in the hot sun. He couldn’t get too hot or too cold. Becoming too cold or overheated or dehydrated or even just getting too tired would typically start a crisis and caused serious health problems for him. Just being around someone that had a cold could put him in the hospital for weeks every year. Just about anything other kids did for fun resulted in another visit for Jon to the intensive care unit.
As a child, Jon had countless complications arising from sickle cell disease, complications that put him in the hospital, when he was young, this happened about two to three times a year. As he got older the hospitalizations came more often, three to five times a year. By the age of 25, Jon was at the emergency room or in the hospital at least once sometimes even twice a week, some were just 4 to 8 hour emergency room visits, some were 2 to 3 day hospital stays, and some evolved into 2 or 3 week long stays and longer.
Those with sickle cell often miss school or work — sometimes for days or weeks — due to complications of the disease. After missing a lot of elementary and high school time, but graduating high school, Jon tried college but eventually stopped trying. His illness kept flaring up. He got tired of being absent and trying to catch up all the time. Jon illness became progressively worse in 2011, 2012, and 2013. Jon had to have his gall bladder removed in November of 2013. He was in the hospital for about a month.
Stem cell transplantation can help some sickle cell patients. We began the exploration in 2011. Stem cell transplants require bone marrow from another person (donor). They are better if they are from a sibling. It had never really been suggested previously but Jon had never been as sick as he had gotten. Jon’s brother Sam was found to be a match. Jon had his bone marrow transplant in September of 2014, receiving bone marrow from his brother. Jon’s transplant went well at first. We weren’t prepared at all for what happened next.
Unfortunately, after about three weeks, Jon developed a severe headache one day. We spoke to the physician but she kind of brushed it off. We asked if he could be observed more closely. Later on in the day, began having seizures. It took three weeks to get them under control. They said they thought that this complication was something called Posterior Reversible Encephalopathy Syndrome (PRES). During this time Jon was put into a medical coma to protect him.
After almost a month, Jon was able to go home. Strangely, his vision had been impacted somewhat, he seemed physically okay, but one afternoon about two weeks later, we noticed that he kept uncharacteristically staring off into space and wasn’t answering questions well. I took him back to the hospital. By the end of that day, he began having seizures again. This time was worse. The seizures were uncontrollable and nonstop for nearly two and a half months. It took 4 different seizures medications to finally control them. During the second day of this stay, they informed us that Jon had had an intracranial or brain hemorrhage, one of his immune suppression medications had caused his blood pressure to skyrocket and impacted his impaired circulatory system and he was unable to move the right side of his body. For the second time, Jon was put into a medical coma.
We weren’t aware or truly prepared of the fact that severe neurological complications occur in many bone marrow transplant recipients, frequently contributing to morbidity or mortality. They are the main causes of death in 10-15% of cases. They can also have harrowing life altering future consequences. Graft Versus Host Disease (transplant rejection) can also be the reason for the development of life-threatening neurological complications.
There is a scripture that I believed for Jon and spoke to him during this time that he was in a coma: Jeremiah 29:11, I say this because I know what I am planning for you," says the Lord. "I have good plans for you, not plans to hurt you. I will give you hope and a good future.
A favorite of Jon's before transplant was: Exodus 14:13 And Moses said unto the people, Fear ye not, stand still , and see the salvation of the LORD, which he will shew to you today: for the enemies whom ye have seen today, ye shall see them again no more forever. I read this to him sometimes as well or played the verses to him through an audio bible.
We entered the hospital the first time pre-transplant in June of 2014. We went home finally in February of 2015. We went home twice before that, hoping that the complications were over, but were almost immediately back at the hospital in the ER then admitted to Intensive Care for one reason or another. Jon had additional problems with his vision which continue but we were home. Jon doesn’t remember anything about his time in Intensive Care, the times when he was in an induced Medical Coma. The complications and medications also faded some of his lifelong memories. He does miss some of the people and nurses at the hospital, over his nearly 8 months of hospitalization, we spent so much time with some of them in the Bone Marrow Transplant Department, the Intensive Care Unit, or the Rehabilitation Department, that they became like family.
Remarkably Jon recovered the ability to move his right side with no noticeable side effects. Some doctors didn’t think he would pull through. One actually told me during his second coma that I needed to go home and prepare for his end. All of them now say he and a lot of his recovery has been miraculous. It will be awhile before he goes back to work or does other things that he did before transplant, but he is applying lots of effort to all that he has had to do.
As complex and long as all of this is and has been, Jon has never really asked for help. The transplant itself cost over 7 million dollars. Jon now has an ongoing expense for visual therapy services that is not covered by any of our insurances. There has been constant travel, gas expenses, because of hematologist appointments, endocrinologist appointments, visual therapist appointments, occupational therapist appointments, speech therapy appointments, orthopedic surgeon appointments, neurologist appointments, vitamin and supplement expenses, new clothing expenses initially because of his enormous weight loss. He lost 75 lbs and all of his muscle mass during this time. If Jon was to continue to do the therapy for the next 12 to 18 months, as he would like to do, there will be a balance after insurance of about $200 every month that he will be expected to be able to pay.
Asking for help adds another layer of complexity. It seems that the therapy has helped Jon to see better. His car needed about nine hundred dollars of work on it as well. We recently had it driven from Florida where he lived before the transplant and that was an additional expense.
With the help of your donations, we can ensure that Jon continues to receive the therapy that has helped him and kept him positive. The life of a sickle cell patient and then the transplant process and recovery is complex, complicated, and long with continual physician and specialist visits, labs, hospital visits and stays. Post-transplant care can be and has been overwhelming at times, but Jon’s sickle cell is gone. He still experiences some pain from the damage sickle cell did to his body, but right now the main focus is his vision, and working towards a daily life routine and a quality of life that he was able to experience before the transplant. Your donation can help diminish the weight of this financial burden and help Jon to focus on his new life, and new hopes.
Any additional funds beyond the basic will go towards Jon’s education. When he can he wants to start taking classes at Columbus State University or a Technical School for X-Ray Technology, followed by a Bachelor’s of Science Degree Program in Diagnostic Radiology and Sonography.
Jon has shown and continues to show a massive amount of determination and the desire to excel despite any circumstances. Over the last year, even with visual issues he used audio technology to learn and pass a fairly difficult test. He is now a Certified Personal Trainer.
He would like to make a difference in the life of others, particularly kids with dreams or those that need a second chance due to an illness. You can make a difference in Jon's life. If the funds for his educational goals can be met of approximately $25,000, it will make life a little less difficult for him. The help would be greatly appreciated. We know there are many ways to give, we would also appreciate your prayers and your faith that his recovery continues and that he reaches his new dreams. Thank you.
Jon was born in August of 1989. He was diagnosed with Sickle Cell Anemia very soon after birth. Sickle cell is a red blood cell disorder that inhibits oxygen flow and circulation. It wreaks havoc and pain in the body. Red blood cells, irregularly shaped, cluster, and clog up and quite often damage organs, cause painful crisis episodes and quite often can cause death. These episodes are called a Sickle Cell Crisis.
Jon’s sickle cell crisis scenarios sometimes involved hand pain, knee pain, elbow pain, feet pain, back pain, or a chest pain crisis. Sometimes there were combinations. A chest pain crisis was a serious event and usually morphed into pneumonia. An acute chest pain syndrome occurred every once in a while which was caused by sickling in the lungs. This syndrome would usually lead to respiratory problems and lung infections. Many times In order to keep Jon’s sickle cell levels low, or get his blood back to the right counts and levels, he was required to get numerous blood transfusions fairly often, particularly during hospitalizations.
Jon had lots and lots of transfusions and many emergency room or hospital visits. I remember crying when Jon, at age 3, had his head and body held down, and he screamed uncontrollably as they stuck a large needle in his back to do a spinal tap. I felt helpless.
Jon’s physical activity had limitations. Jon couldn’t play in the snow or play basketball or baseball outside in the summer in the hot sun. He couldn’t get too hot or too cold. Becoming too cold or overheated or dehydrated or even just getting too tired would typically start a crisis and caused serious health problems for him. Just being around someone that had a cold could put him in the hospital for weeks every year. Just about anything other kids did for fun resulted in another visit for Jon to the intensive care unit.
As a child, Jon had countless complications arising from sickle cell disease, complications that put him in the hospital, when he was young, this happened about two to three times a year. As he got older the hospitalizations came more often, three to five times a year. By the age of 25, Jon was at the emergency room or in the hospital at least once sometimes even twice a week, some were just 4 to 8 hour emergency room visits, some were 2 to 3 day hospital stays, and some evolved into 2 or 3 week long stays and longer.
Those with sickle cell often miss school or work — sometimes for days or weeks — due to complications of the disease. After missing a lot of elementary and high school time, but graduating high school, Jon tried college but eventually stopped trying. His illness kept flaring up. He got tired of being absent and trying to catch up all the time. Jon illness became progressively worse in 2011, 2012, and 2013. Jon had to have his gall bladder removed in November of 2013. He was in the hospital for about a month.
Stem cell transplantation can help some sickle cell patients. We began the exploration in 2011. Stem cell transplants require bone marrow from another person (donor). They are better if they are from a sibling. It had never really been suggested previously but Jon had never been as sick as he had gotten. Jon’s brother Sam was found to be a match. Jon had his bone marrow transplant in September of 2014, receiving bone marrow from his brother. Jon’s transplant went well at first. We weren’t prepared at all for what happened next.
Unfortunately, after about three weeks, Jon developed a severe headache one day. We spoke to the physician but she kind of brushed it off. We asked if he could be observed more closely. Later on in the day, began having seizures. It took three weeks to get them under control. They said they thought that this complication was something called Posterior Reversible Encephalopathy Syndrome (PRES). During this time Jon was put into a medical coma to protect him.
After almost a month, Jon was able to go home. Strangely, his vision had been impacted somewhat, he seemed physically okay, but one afternoon about two weeks later, we noticed that he kept uncharacteristically staring off into space and wasn’t answering questions well. I took him back to the hospital. By the end of that day, he began having seizures again. This time was worse. The seizures were uncontrollable and nonstop for nearly two and a half months. It took 4 different seizures medications to finally control them. During the second day of this stay, they informed us that Jon had had an intracranial or brain hemorrhage, one of his immune suppression medications had caused his blood pressure to skyrocket and impacted his impaired circulatory system and he was unable to move the right side of his body. For the second time, Jon was put into a medical coma.
We weren’t aware or truly prepared of the fact that severe neurological complications occur in many bone marrow transplant recipients, frequently contributing to morbidity or mortality. They are the main causes of death in 10-15% of cases. They can also have harrowing life altering future consequences. Graft Versus Host Disease (transplant rejection) can also be the reason for the development of life-threatening neurological complications.
There is a scripture that I believed for Jon and spoke to him during this time that he was in a coma: Jeremiah 29:11, I say this because I know what I am planning for you," says the Lord. "I have good plans for you, not plans to hurt you. I will give you hope and a good future.
A favorite of Jon's before transplant was: Exodus 14:13 And Moses said unto the people, Fear ye not, stand still , and see the salvation of the LORD, which he will shew to you today: for the enemies whom ye have seen today, ye shall see them again no more forever. I read this to him sometimes as well or played the verses to him through an audio bible.
We entered the hospital the first time pre-transplant in June of 2014. We went home finally in February of 2015. We went home twice before that, hoping that the complications were over, but were almost immediately back at the hospital in the ER then admitted to Intensive Care for one reason or another. Jon had additional problems with his vision which continue but we were home. Jon doesn’t remember anything about his time in Intensive Care, the times when he was in an induced Medical Coma. The complications and medications also faded some of his lifelong memories. He does miss some of the people and nurses at the hospital, over his nearly 8 months of hospitalization, we spent so much time with some of them in the Bone Marrow Transplant Department, the Intensive Care Unit, or the Rehabilitation Department, that they became like family.
Remarkably Jon recovered the ability to move his right side with no noticeable side effects. Some doctors didn’t think he would pull through. One actually told me during his second coma that I needed to go home and prepare for his end. All of them now say he and a lot of his recovery has been miraculous. It will be awhile before he goes back to work or does other things that he did before transplant, but he is applying lots of effort to all that he has had to do.
As complex and long as all of this is and has been, Jon has never really asked for help. The transplant itself cost over 7 million dollars. Jon now has an ongoing expense for visual therapy services that is not covered by any of our insurances. There has been constant travel, gas expenses, because of hematologist appointments, endocrinologist appointments, visual therapist appointments, occupational therapist appointments, speech therapy appointments, orthopedic surgeon appointments, neurologist appointments, vitamin and supplement expenses, new clothing expenses initially because of his enormous weight loss. He lost 75 lbs and all of his muscle mass during this time. If Jon was to continue to do the therapy for the next 12 to 18 months, as he would like to do, there will be a balance after insurance of about $200 every month that he will be expected to be able to pay.
Asking for help adds another layer of complexity. It seems that the therapy has helped Jon to see better. His car needed about nine hundred dollars of work on it as well. We recently had it driven from Florida where he lived before the transplant and that was an additional expense.
With the help of your donations, we can ensure that Jon continues to receive the therapy that has helped him and kept him positive. The life of a sickle cell patient and then the transplant process and recovery is complex, complicated, and long with continual physician and specialist visits, labs, hospital visits and stays. Post-transplant care can be and has been overwhelming at times, but Jon’s sickle cell is gone. He still experiences some pain from the damage sickle cell did to his body, but right now the main focus is his vision, and working towards a daily life routine and a quality of life that he was able to experience before the transplant. Your donation can help diminish the weight of this financial burden and help Jon to focus on his new life, and new hopes.
Any additional funds beyond the basic will go towards Jon’s education. When he can he wants to start taking classes at Columbus State University or a Technical School for X-Ray Technology, followed by a Bachelor’s of Science Degree Program in Diagnostic Radiology and Sonography.
Jon has shown and continues to show a massive amount of determination and the desire to excel despite any circumstances. Over the last year, even with visual issues he used audio technology to learn and pass a fairly difficult test. He is now a Certified Personal Trainer.
He would like to make a difference in the life of others, particularly kids with dreams or those that need a second chance due to an illness. You can make a difference in Jon's life. If the funds for his educational goals can be met of approximately $25,000, it will make life a little less difficult for him. The help would be greatly appreciated. We know there are many ways to give, we would also appreciate your prayers and your faith that his recovery continues and that he reaches his new dreams. Thank you.
Organizer
Jon Brown
Organizer
Groveport, OH