July 5, 2022 — July is going to be a month of celebration and joy for (Child Organ Transplant Association) COTA’s Rodivich Family of Southern Louisiana. It was 11 years ago this month when their son, then eight-year-old Seth, experienced his first case of acute pancreatitis. This summer, Seth is celebrating completing his first year of college … living life fully and mostly pain free thanks to a cutting-edge transplant he underwent nearly 1,200 miles from the family’s home.
Seth Rodivich was born in 2003 to parents Jeana and Scott. He came into the world and was greeted by two older brothers, Trey and Tyler. Life was good, but busy, for this family of five. But in just a short matter of time the family’s ‘normal’ was turned upside down with Seth’s challenging and unanticipated diagnosis of chronic hereditary pancreatitis.
When Mom Jeana looks back now, years later, she specifically remembers each case of pancreatitis that wracked Seth’s body. After experiencing Seth’s first episode in July 2011, rushing him to the ER and hearing the diagnosis, Jeana has maintained the timeline of attacks in her head and in her heart.
Seth’s second case of acute pancreatitis was in May 2014 at the age of 11, and the third case was in March 2016 at the age of 12. In December 2016, Seth underwent testing at Boston Children’s Hospital that confirmed a Spink 1 gene mutation diagnosis of pancreas divisum, which meant that Seth’s organ itself was deformed. In May 2017, Seth endured his fourth case of acute pancreatitis and his fifth case followed in July 2017. Another painful attack occurred in May 2018 and this time, Jeana and Scott were told at the age of 15, Seth’s pancreatitis was becoming chronic.
By July 2019, chronic pancreatitis (accompanied by many stones that obstructed the main pancreatic duct) caused Seth to be in daily pain. It was at this point in Seth’s disease progression that he was referred to the M Health Fairview Clinics and Surgery Center in Minneapolis to see if he would be a candidate for Total Pancreatectomy with Islet Auto Transplantation (TPIAT).
Chronic pancreatitis is rare in children; there are few medical centers in the country that specialize in treating this condition. Seth’s pain, however, had become so intense and frequent that both Jeana and Scott were ready to travel wherever necessary to find a medical team who could provide Seth some type of relief. According to the University of Minnesota Fairview website, when acute pancreatitis develops into a chronic condition, the child or teen’s pain never goes away. Over time, this chronic condition can become so severe that diabetes can result. The answer for many, including the Rodivich family, is TPIAT.
During TPIAT, a transplant a surgeon first removes the pancreas. Specially trained technicians then break down the pancreas into its components and separate out the islet cells. This process is similar to how blood banks separate red blood cells from white blood cells for transfusions. The islet cells are then returned to the operating room and the surgeon injects them into the patient’s liver. If successful, the islet cells in the liver will produce insulin to keep blood sugar levels normal — sometimes supported with supplemental insulin injections if necessary. Since the islets are the patient’s own cells, there is no risk they will be rejected by the body.
According to Jeana, “Given Seth’s hereditary pancreatitis, his living with varying degrees of chronic pain, the rare nature of his disease and the lack of providers who specialize in pediatric pancreatitis, we faced the reality that we would need to seek treatment for Seth in Minneapolis at a transplant center that is 1,165 miles from our home in Louisiana.”
In October 2019, Jeana and Seth travelled to Minneapolis via airplane for a three-day evaluation. Before they even boarded the plane to return to Louisiana, they were told that Seth was approved for the procedure. The Fairview team of specialists told them this transplant surgery would mean Seth would not only lose his pancreas but also his gall bladder, spleen and part of his small intestines. Without a pancreas to help with food digestion, Seth would need to be on a lifelong regimen of enzyme medication. During the transplant, Seth’s insulin cells would be extracted and implanted in his liver in an effort to prolong (and possibly prevent) the onset of diabetes and a dependency on insulin. After many conversations, 15-year-old Seth told his parents he was indeed willing to go through all of this so he could hopefully/finally live a pain-free life.
Once Seth decided he was fully on board with the transplant team’s next steps, Jeana wanted to learn more about his diagnosis, the transplant and how other families were coping with caring for their children’s pain. She joined an online Pancreatitis Support Group, which became an important lifeline during this time of fear, uncertainty and stress. Several TPIAT family members posted about the Children’s Organ Transplant Association (COTA). Jeana describes them as COTA Raving Fans. She decided to reach out to COTA through the organization’s Get Started portal (https://cota.org/get-started/).
COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. On November 13, 2019, Jeana called COTA with specific questions after reviewing COTA.org. Several days later, the family’s formal agreement to become part of the COTA Family arrived at the organization’s Indiana headquarters.
Several weeks later on January 18, 2020, a COTA fundraising specialist flew to Louisiana to train the volunteers for the COTA campaign in honor of Seth’s Fight. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses. This group of family members and friends quickly got to work organizing fundraisers to help with mounting transplant-related expenses.
“From the moment we started working with COTA, we started to feel a sense of relief,” Jeana said. “The people at COTA were very helpful from day one and they have always been positive and supportive ever since. During some very stressful times when we were very far away from our home and our support network, COTA made it easier to stay connected with the website they provided us to share Seth’s journey to transplant and his days/months of recovery.”
In January 2020, Jeana started blogging on the COTA-provided website to keep their family and friends updated on Seth’s condition and the family’s road to transplant.
January 25, 2020: Seth continues to manage his daily pain. He is finishing soccer season and is preparing for his next school theatrical role, Scar in The Lion King Jr. We kicked off the COTA fundraising efforts last weekend with a great meeting led by a COTA representative and our volunteers. Our COTA volunteers have started things off with an ‘8’ social media campaign in honor of Seth’s eight-year battle with pancreatitis. From what we have learned from other families who have gone through this surgery, the cost of feeding tubes is quite expensive, and most insurance plans do not cover the equipment or the formula necessary. It is so comforting to know COTA funds can help with transplant-related expenses.”
February 12, 2020: Exactly four months to go. Seth continues to deal with discomfort. Spoke to the Ronald McDonald House in Minnesota today and hoping to get our housing arranged. Prayers needed we get housing there for our entire stay.
March 1, 2020: During winter break Seth had his wisdom teeth removed. This was important to get done while he still has a spleen to fight infections. Next, we need to finish getting his vaccines. There are numerous ones required prior to his transplant. COTA for Seth’s Fight fundraisers are currently being planned for this month and into April. Seth got accepted to continue playing soccer. Heading to his first game now.
March 9, 2020: Seth had some pain this past week. Tests confirmed he was having an attack, but thankfully he was able to eat and drink and that kept him out of the hospital. He performed four performances over the weekend for his school’s production of The Lion King Jr. He was absolutely incredible. How he did that while under a pancreatitis attack is beyond me.
March 13, 2020: Seth’s pain has improved but all of his soccer events have been postponed due to the virus scare. The COTA Zumbathon fundraiser may have to be rescheduled.
March 26, 2020: Thanks for checking on us. Seth is doing fine. There is no news from the hospital if we are still on track for a June transplant. Both the Zumbathon and Golf Outing have been postponed to a later date. Should know more about the bowling event soon. So sad we have to postpone our COTA fundraising efforts, but we are beyond grateful for all of the online contributions so far.
April 8, 2020: I just got word we met the COTA for Seth’s Fight $55,000 fundraising goal this morning … and our team is not done. Thanks to all of you for your generosity! Even though we cannot see you, we cannot thank you enough. It brings us comfort to know COTA funds will be there for a lifetime of transplant-related expenses.
May 8, 2020: Hope this update finds you COVID-19 free. I have actually enjoyed life not being as busy as before. This time has given us time to slow down and calm down and get prepared for the surgery. Seth will end school on a much less stressful note. We have an issue with housing because Ronald McDonald is not accepting new families now. We have had to seek alternative housing. Fairview confirmed we are all set for the transplant. Vaccines are all done. Seth is ready to get this done. Thanks for all your support; we remain forever grateful.
June 4, 2020: Left today for Minnesota and arrived in Memphis this evening. Due to the curfew here, we had some trouble finding something to eat.
June 8, 2020: Hi everybody. We arrived in Minneapolis yesterday. The trip went very well. We have had to deal with some COVID-19 restrictions along the way and with the current unrest here in Minneapolis. Tomorrow is a full day starting with a COVID-19 test, then diabetes training, pre-op and post-op training and a meeting with the transplant surgeon. Please be in prayer that the visitor restrictions ease before Seth’s transplant. As of now, only one of us can be in the hospital at one time.
June 12, 2020: It is done. It has been a long day, but we made it. (Scott and I were able to be together for the surgery but need to tag team every 48 hours after that due to COVID-19 restrictions.) Everything went well. The doctors say the islet yield was above average and we will know in several months what quality they are when they are put to work. Thank you for all of your prayers and support. So happy to say goodbye to pancreatitis forever!
The Rodivich family returned to their Louisiana home on July 23rd and Seth’s feeding tube was removed on August 4th. Seth was able to start his senior year of high school on time and in less pain. In January 2021, Seth and Jeana flew to Minneapolis for his six-month, post-transplant check. The best news? Seth’s recovery was completely on target and the transplant team was extremely happy with the results.
The COTA for Seth’s Fight volunteers continued to fundraise for transplant-related expenses and on March 9th the team was awarded a third challenge grant from COTA for raising more than $75,000.
The first half of 2021 flew by quickly as Seth was able to fully participate in and complete his last year of high school. There were many cheers from the audience when Seth walked across the stage and graduated from Northlake Christian School on May 14, 2021. Seth then headed to the University of Southern Mississippi to major in drama. Jeana and Scott are the proud parents of a young man who excelled even while experiencing severe pain and missing school instruction days. He is now able to pursue his dreams.
Jeana is thrilled to report Seth is living a pain-free life and is free of pancreatitis as well. She says the exchange for diabetes and digestive enzyme deficiency has been worth it. “The transplant-related costs continue to be a very heavy burden,” Jeana said. “But with COTA’s guidance and support it is completely manageable. COTA helped our volunteers reach each and every financial goal.”
She continued, “The Children’s Organ Transplant Association (COTA) provided hope by showing us we could navigate Seth’s complicated transplant journey without experiencing financial fear and stress. COTA allowed us to focus on our son first and foremost. We cannot express what a gift it is to open medical bills and refill expensive prescriptions with literally no worry or concern about how we are going to pay for everything. I truly believe we would be facing bankruptcy now if we had not partnered with COTA. We will be forever grateful.”
This July, Seth will likely be on campus participating in a theatrical presentation — honing his craft while working towards his college degree. Scott and Jeana will undoubtedly be in the audience watching their son using his gifts and talents without being wracked with pain and anxiety. These proud parents will also never forget the army of COTA Miracle Makers who made the journey manageable for this family.
For more information about the Children’s Organ Transplant Association (COTA), or to find a COTA family in your area, please email kim@cota.org.
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