Our Story

Jaylen is a spunky 15-year-old high school freshman. Jaylen is a teen who loves to play sports and hang out with his friends. In 2012, when Jaylen was around 6 years old around 3 o’clock in the morning he was curled up in a ball on the couch writhing in pain. We rushed to the ER not knowing what else to do; this was not your normal belly ache! After a long wait in the ER waiting room, and a couple of x-rays on his stomach, we were told he was probably constipated and sent home. Fast forward to the summer of 2014. Jaylen was going into the second grade and just getting ready to go to his first night of football camp when- Same thing… Doubled over in pain on our living room floor screaming for I cannot tell you how long. We again rushed him to the hospital where after sitting in the ER waiting room for what seems like forever, he was finally brought back for evaluation. By this time, he was completely lethargic, like his body was done. He was limp, pale, and jaundice. Fortunately, this time (probably because his mom was not leaving without answers) the doctors did a blood draw and once they saw his amylase and lipase counts were through the roof, they admitted him right away. PANCREATITIS! What the heck is that and how does an active and otherwise healthy second grader get it? It took us quite a few months of testing, trying to change his diet around in numerous ways, and more testing with no concrete solutions or causes. Finally, after getting some genetic tests done, they found that he has a genetic mutation called SPINK1. This mutation, acting along with another unknown variable, is known to cause pancreatitis. Sigh… well at least we know, but how do we stop it!?! Jaylen’s original diagnosis was acute recurrent pancreatitis, but unfortunately, this disease has since turned chronic meaning that it has continued to get worse and will continue to get worse as time goes on. Chronic also means there is irreversible damage to his pancreas and its endocrine and exocrine functions. Eventually chronic pancreatitis would turn into malabsorption, pain every day, weight loss and diabetes– which is NOT what we want for Jaylen. There is no cure for pancreatitis, and it is a very unpredictable disease that causes him debilitating bouts of excruciating pain, along with nausea and vomiting at very random times. This has not been easy on Jaylen over the last 6- 8 years, but Jaylen has never let this disease define him or what he can and cannot do. Jaylen has been an active football player, basketball player, baseball player, track runner, and even though he is not loving it, he is trying golf this year! “I just wish we could play football.” He is a tough kid and definitely BUILT FOR BATTLE!

Jaylen’s specialist in Milwaukee referred us to the Masonic Children’s Hospital in Minneapolis, Minnesota to get a consultation for TPIAT surgery. He believes the surgery would give him better quality of life. TPIAT surgery can hopefully offer Jaylen a pancreas PAIN FREE life, but it also comes with its own set of LIFELONG changes for him. When we asked Jaylen how he felt about TPIAT after hearing the battles he would face with recovery and the rest of his life, he did not hesitate in saying “I want to do it!” This is a testament to how much pain he deals with and how awful of a disease chronic pancreatitis really is.

The recovery will be long for him and it will be taken day by day. We know prayers, positive attitudes, encouraging words, and efforts can really go a long way in how his recovery goes.
There is no doubt that Jaylen will try to heal as quickly as he possibly can to get back to doing the things he loves! Living pancreas PAIN FREE would be the biggest blessing! Our trust and faith in our Lord and Savior Jesus Christ will continue to be our rock and foundation to get our family through this. We give God thanks every day that we get to spend here on earth with our family! God has blessed us so much to be able to live in such a wonderful community. We have so many friends and family around us to give us a great support system and to help guide us through this journey.

Here is a very brief description of the TPIAT (Total Pancreatectomy and Islet AutoTransplantation) surgery that Jaylen will have done in early November–

This is considered a major transplant surgery that will take around 12 – 15 hours to complete.
Jaylen will have his pancreas, spleen, and gall bladder removed from his body. Once his pancreas is out, they send it off to a lab to harvest as many good islet cells that they can. Islet cells produce insulin for your body as part of the endocrine function. While this is being done, the doctors will have to reroute his stomach and small intestine. Once they harvest the islet cells from his pancreas, they re-infuse those cells back into his liver and hopefully his liver will accept them and start producing insulin for his body. If the islet cells function in the liver, there is a possibility that they can produce enough insulin for his body to where he does not have to be insulin dependent/diabetic. The rejuvenated islet cells working in his liver can last on an average of 3 to 10 years, but the longest someone has had the liver-produced insulin is almost 20 years post-op. If the islet cells do not do well, he could be insulin dependent/diabetic right after the surgery for the remainder of his life. Also, the exocrine function of the pancreas is to secrete enzymes to aid in digestion of food. Jaylen will have to take enzymes by mouth every time he eats. These are some of the tradeoffs with getting the TPIAT surgery done. To do this surgery, they go in with an incision down his stomach and 2 camera ports on either side of his stomach.

After surgery he will spend at the minimum, one week in the ICU and hopefully start physical therapy. After two or three weeks in the hospital, he should be able to leave, but unfortunately will not be able to leave Minnesota. Nancy and Jaylen will have to live in Minnesota for around 8 – 12 weeks. After this surgery, they want the patients to stay in the immediate area for monitoring, tests, and check-ups.

This is obviously going to be very difficult for our family to not only watch our child go through something this extreme, but to also be away from our main support systems for that long.

Since this surgery comes with significant expenses, not only for the procedure, but for a lifetime after, and the possibility of follow up surgeries, we have partnered with the Children’s Organ Transplant Association (COTA) for assistance. Our family appreciates any support you can give!



The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.

3 thoughts on “Our Story

  1. I have three daughters that have it
    My youngest had the surgery
    One year ago today
    She was in ICU for four or five days
    In the hospital for ten days
    Then we got to go home
    We only lived two hours away so we got to go home
    She went back to school four weeks later
    One year later she is doing awesome
    No hospitalizations
    She is still taking insulin bit somewhere between 20 to 30 units
    She has had no complications at all

    If you asked if she would do it again she said yes
    She lives a pain free life now
    Only thing is is the insulin but she is doing awesome with it
    My oldest has had it since birth
    She needs the surgery
    She will be twenty five sat
    But she has to lose weight first
    I pray for tour son and you
    If you want to talk I am on face book
    Lisa Elaine Casteen
    Praying for you all
    Good luck
    Oh by the way it took 12 hours

  2. God bless your family. Im suffering from pancreatic insufficiency and pancreatitis.
    To hear your story gives me so much hope. You are an amazing young man!

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