Help Paul Kempa Beat Chronic Pancreatitis!
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Hello! My name is Travis. This is my little brother, Paul. When he was just 5 years old, our parents took him to the ER because he had severe abdominal pain. It was so bad that he couldn't even walk, we had to carry him into the hospital. Without much to really go on, they tested his blood and found his lipase levels to be in the thousands. For reference, a normal lipase level is typically 150 U/L (Units per Liter) or less.
Lipase is the enzyme that the pancreas uses to break down fats. When it builds up like that, it causes Pancreatitis. Pancreatitis is the inflammation of the pancreas, and it causes extreme abdominal pain that can last for days. This is something that is typically caused by alcohol abuse, but we were unable to find what triggered this. He was in the hospital for almost a week and wasn't safe to be discharged until he was able to eat solid food without any pain and his lipase levels returned to normal.
This was only the first episode. It continued to happen several times a year (and still does) with no apparent trigger. Over the years, he has been seen and monitored by many different specialists. He has had procedures including stents placed into his pancreas. As you could probably imagine, over time these episodes cause extra wear & tear to his pancreas. The doctors have informed us that there is even a chance it could one day turn into pancreatic cancer.
And now, over a decade since being diagnosed, Paul is still having to endure the daily pressure of not knowing if today is going to be a good day. He is almost always in some degree of pain. Our parents and I taught him from a very early age how to measure his pain on a scale of 1 - 10 (always the first question we ask him). This has impacted his daily life in tremendous ways, including a lot of missed school time. Paul even sees a tutor every week to help get caught up on his school work. Our mother stopped working years ago so that she could be there at the drop of a hat whenever Paul needed her.
Chronic Pancreatitis is a rare condition. As humans, we cannot survive easily without a pancreas. It's responsible for many things, including insulin production. Unfortunately, as much as we know about the digestive system, little information is still known about the pancreas specifically, so treatment options for something like this are very limited. There are no artificial pancreases or anything like that. Even transplants are very limited.
We were advised of an experimental procedure, called a "Pancreatic Auto Islet Transplantation & Pancreatectomy" (Here's a Hopkins University article describing the procedure). In this procedure, the pancreas is removed entirely and the cells that produce insulin (called islets) are "harvested" in a special machine. The islet cells are then infused into the liver, where they can continue to produce insulin. We were referred to the Cincinnati Children's Hospital's Pancreas Care Center to have Paul evaluated for the procedure.
Living on the east coast, this isn't an easy trip for us to make. We will be there for weeks (probably months) for the preparation and recovery. Our parents are looking for any and all assistance to help with this. Since the institution is out-of-state, Paul's medical insurance does not cover this procedure. Each Pancreatitis episode that Paul has is doing more damage to his pancreas and increasing his risk of developing pancreatic cancer. We're hoping to plan for this trip as soon as we are able to.
Paul is now 17 years old, he loves to play video games and hang out with his friends. He's a kind-hearted kid who loves to help people. He is also a quick learner and loves to be challenged. He is always in great spirits regarding his condition and has never complained about having to get an exam or a needle or anything like that. He's always ready for the next step and embraces each day with confidence.
Here are some pictures! As you can see, he's been a character since he was a toddler, making goofy faces and jokes all the time.
Thank you!
Lipase is the enzyme that the pancreas uses to break down fats. When it builds up like that, it causes Pancreatitis. Pancreatitis is the inflammation of the pancreas, and it causes extreme abdominal pain that can last for days. This is something that is typically caused by alcohol abuse, but we were unable to find what triggered this. He was in the hospital for almost a week and wasn't safe to be discharged until he was able to eat solid food without any pain and his lipase levels returned to normal.
This was only the first episode. It continued to happen several times a year (and still does) with no apparent trigger. Over the years, he has been seen and monitored by many different specialists. He has had procedures including stents placed into his pancreas. As you could probably imagine, over time these episodes cause extra wear & tear to his pancreas. The doctors have informed us that there is even a chance it could one day turn into pancreatic cancer.
And now, over a decade since being diagnosed, Paul is still having to endure the daily pressure of not knowing if today is going to be a good day. He is almost always in some degree of pain. Our parents and I taught him from a very early age how to measure his pain on a scale of 1 - 10 (always the first question we ask him). This has impacted his daily life in tremendous ways, including a lot of missed school time. Paul even sees a tutor every week to help get caught up on his school work. Our mother stopped working years ago so that she could be there at the drop of a hat whenever Paul needed her.
Chronic Pancreatitis is a rare condition. As humans, we cannot survive easily without a pancreas. It's responsible for many things, including insulin production. Unfortunately, as much as we know about the digestive system, little information is still known about the pancreas specifically, so treatment options for something like this are very limited. There are no artificial pancreases or anything like that. Even transplants are very limited.
We were advised of an experimental procedure, called a "Pancreatic Auto Islet Transplantation & Pancreatectomy" (Here's a Hopkins University article describing the procedure). In this procedure, the pancreas is removed entirely and the cells that produce insulin (called islets) are "harvested" in a special machine. The islet cells are then infused into the liver, where they can continue to produce insulin. We were referred to the Cincinnati Children's Hospital's Pancreas Care Center to have Paul evaluated for the procedure.
Living on the east coast, this isn't an easy trip for us to make. We will be there for weeks (probably months) for the preparation and recovery. Our parents are looking for any and all assistance to help with this. Since the institution is out-of-state, Paul's medical insurance does not cover this procedure. Each Pancreatitis episode that Paul has is doing more damage to his pancreas and increasing his risk of developing pancreatic cancer. We're hoping to plan for this trip as soon as we are able to.
Paul is now 17 years old, he loves to play video games and hang out with his friends. He's a kind-hearted kid who loves to help people. He is also a quick learner and loves to be challenged. He is always in great spirits regarding his condition and has never complained about having to get an exam or a needle or anything like that. He's always ready for the next step and embraces each day with confidence.
Here are some pictures! As you can see, he's been a character since he was a toddler, making goofy faces and jokes all the time.
Thank you!
Co-organizers (4)
Travis Martin
Organizer
Parkville, MD
Geri Kempa
Beneficiary
Brando NinjaMaster
Co-organizer
Geri Kempa
Co-organizer
Paul Kempa
Co-organizer