November 1, 2024 — November is Diabetes Awareness Month, and the Noud family of Illinois is celebrating the four-year anniversary of their son’s cutting-edge transplant that required extensive caregiving by his parents to get him to where he is today. The family was told that while this somewhat new transplant would likely eliminate much of the immense pain their son had dealt with for years, one potential side effect was the possibility he could become diabetic for the rest of his life.
It was a risk they were willing to take.
This family’s transplant journey began in 2012 when Dad Jeff found (then) six-year-old Jaylen at 3:00 a.m. writhing in pain on their couch. He called Nancy, who was out of town. Jeff then rushed Jaylen to the local Emergency Room not knowing what else to do. After a long wait and several x-rays of Jaylen’s stomach, they were told he was likely constipated and were sent home. Their next scare was during the summer of 2014 as Jaylen was preparing for second grade. They were getting him ready to go off to football camp that summer when the same thing happened … their little boy was doubled over in pain on the living room floor. But this time he was also screaming. Again, they rushed him to the local hospital where he underwent an evaluation. One major difference with this episode was the fact that he was completely lethargic, his limbs were limp, he was pale and jaundiced. This visit, the doctors did a blood draw and found his amylase and lipase counts were very high. Jaylen was immediately admitted for further testing, the outcome of which was the diagnosis of pancreatitis around his ninth birthday. His parents were stunned. Over the next months, further testing was done. Jaylen had a genetic mutation called SPINK1, which is known to cause pancreatitis because the organ cannot protect itself from being digested by its own cells. Jaylen’s acute form of the disease worsened over time and became chronic, which results in irreversible damage to the pancreas and its endocrine and exocrine functions. There is no cure for pancreatitis, a highly unpredictable disease, which caused Jaylen to continue having debilitating bouts of excruciating pain, vomiting and nausea occurring at random times.
Nancy shared that while it was a relief to have an answer to what had been causing their son’s severe pain, they were not getting definitive answers on what could be done to help him. For the next eight years of his life, Jaylen never let this disease limit what he could do — especially as an athlete. He continued to play football, basketball, baseball and run track … and he continued to excel at all of them.
When the pain had simply become too much for Jaylen, his specialist in Milwaukee, Wisconsin, had a final recommendation … TPIAT (Total Pancreatectomy and Islet Auto Transplantation), which is typically a 12-15 hour surgery that could offer Jaylen a better quality of life.
The Noud family was referred to M Health Fairview Clinics and Surgery Center – Minneapolis, which was 350 miles, or a five-hour drive, from their home in Winnebago, Illinois, to seek a consultation for the TPIAT surgery. Jaylen, Nancy and Jeff made the journey the first week of September 2020 to see if he was a candidate. After a variety of tests and talking to numerous doctors and specialists over the course of three days, it was determined Jaylen would be approved for the surgery. Jaylen’s main concern after hearing everything: how soon afterwards could he return to playing sports?
During TPIAT, a transplant surgeon first removes the pancreas, followed by removal of the spleen and gallbladder. Specially trained technicians 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. While this is being done, the surgeons reroute the stomach and small intestine. The islet cells are then returned to the operating room and they are injected 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 little risk they will be rejected by the body.
The rejuvenated islet cells working in a liver can last an average of three to 10 years, but the longest someone has had liver-produced insulin is almost 20 years post-op. If the islet cells did not do well, Jaylen could be insulin dependent, or diabetic, for the rest of his life. After the transplant surgery, Jaylen would likely spend one week in the ICU. After another three weeks inpatient, he should be able to leave the hospital … but, unfortunately, not the state of Minnesota. They learned Nancy and Jaylen would likely need to live in Minnesota for eight to twelve weeks post-transplant for monitoring, tests and check-ups. A full recovery from TPIAT can take up to a year.
“Doctor after doctor after doctor, we heard everything about the TPIAT surgery and recovery with absolutely no details left out,” Jeff said. “It was horrifying to say the least. That night we went out for dinner and we asked Jaylen (while he was eating his favorite steak dinner) what his thoughts were after knowing all that was involved. Without batting an eye, he said, ‘Let’s do it!’ After hearing those words and knowing he had heard everything about the surgery from the doctors and he was still choosing to go forward, Nancy and I knew he was done struggling with the chronic pain. Jaylen wanted to do this, and that is what we needed to know.”
TPIAT recovery is lengthy and is a day-by-day process. Nancy and Jeff knew their son would try and heal as quickly as possible to get back to playing sports. But they also wanted Jaylen to understand the reality that he needed to take the time necessary to heal properly so he could hopefully live a pain-free life.
During their consultations in Minnesota, the financial reality of this transplant was also discussed. The transplant coordinator shared information about the Children’s Organ Transplant Association (COTA). COTA uniquely understands that parents who care for a child, teen or young adult before, during and after a transplant have enough to deal with; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions are tax deductible to the fullest extent of the law, and funds are available for a lifetime of transplant-related expenses.
On September 11, 2020, Nancy called COTA and spoke to the Family Outreach Specialist. She had done significant research and had very specific questions about how COTA might be able to help relieve some of the financial stressors the family would be facing. One of their main concerns was, as Illinois residents, Jaylen’s medical care to date had been covered. An out-of-state transplant might not be covered. The family lives five hours from the center and did not have a travel benefit with their insurance. Travel, lodging, meals and parking could add up quickly given how long they would need to be in Minnesota. They also had two daughters in Illinois, who, during this time, would need care and tending. Nancy was grateful for the information about COTA. Four days later, Nancy and Jeff completed and sent their signed agreement to COTA’s headquarters … the Noud family officially became part of the COTA Family, and Jaylen became a COTA Teen.
A group of very special, highly-motivated friends and family members rallied around the Noud family and enthusiastically agreed to be their COTA volunteer team. In late September, a COTA fundraising specialist trained the family’s group of volunteers via telephone due to COVID-19 and so fundraising for transplant-related expenses could begin immediately. The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA for Jaylens Battle was launched, and the website was immediately available for online donations to help with transplant-related expenses.
On September 26, 2020, Nancy posted on the COTA-provided website: “I am just going to be honest, raw, real … Asking for help is not one of my strong suits. Stubborn seems to fit me better. When I’ve got a challenge ahead of me, I tell myself ‘I’ve got this … I don’t need help.’ Until now. I have always believed it takes a village to raise a child. Jeff and I would like to say THANK YOU to our village. You have watched Jaylen grown, kept him safe, directed and taught him, encouraged him, coached him, prayed for him and now are donating in honor of him. We are facing a HUGE challenge and now I’ve changed my mind. We can do this together. We have each other for support.”
In early October 2020, the Noud family learned Jaylen’s TPIAT was scheduled for November 5, 2020, in Minneapolis. Jaylen received all the necessary vaccinations and various preparatory appointments were made. Nancy and Jeff were preparing for the trip to Minneapolis while making sure all arrangements were in place in Illinois for their daughters’ care.
On October 25, 2020, Jeff and Nancy posted: “Our community is AMAZING! We have always known this, but are now experiencing it firsthand. Ever since we announced Jaylen’s upcoming surgery, the love and support we have received has been overwhelming. Jaylen’s condition has been an ongoing struggle for a long time. Now our HOPE is Jaylen can live a long, happy, healthy, pain-free life after the TPIAT. Knowing we are taking this Battle on with you all behind us gives us so much peace and confidence.”
Much love, The Nouds
H.O.P.E. (Hold On, Pain Ends)
On November 1, 2020, they posted: “Holy Cow! What a sendoff! We have a full day of appointments tomorrow. Say some prayers for health and comfort for these anxiety-filled days ahead. Staying at a hotel tonight and then after tomorrow’s appointments, checking in to the Ronald McDonald House. Even though most of it is shut down due to COVID-19, we are so grateful. The first thing Jaylen did when we arrived was hook up his PS4. Priorities.
On November 5th, Jeff and Nancy posted updates as they learned them, throughout the long, stress-filled day. “Seven hours in and just received a call that ‘cranky panky’ has been removed; Jaylen is doing well. His pancreas is now going off for harvesting the islet cells.” … “Ten hours in and last we heard they are still harvesting islet cells. Once that is done, they will infuse them back into his liver. Love you all!” … “Eleven hours in, closing time. He will be moved to ICU soon.” The last post of TPIAT surgery day said, “The surgery was just under 13 hours, and the doctor told us it was difficult, but went well. They were able to get a high count of islet cells. Now we need to pray that his liver and body accept them. Mom and Dad are going to try and rest our eyes for the night.”
Jeff and Nancy posted regularly during the days and weeks of recovery that followed. Jaylen’s recovery was accompanied by a lot of pain and discomfort. Physical therapy started soon after the surgery was completed; not surprisingly, Jaylen was very motivated to get moving. As medications were reduced over time and various IVs and device connections were eliminated, Jaylen continued to do well. They did share he was regularly checking his phone, so they encouraged friends and followers to continue to send positive texts and snaps because they were lifting his spirits. On Day 5 Post-Op, Jaylen was moved out of PICU and to a regular floor. This was a huge step in his post-transplant recovery.
But there were also bumps in the journey, including a problem with his GJ tube. Ultimately, it was determined Jaylen would need to be returned to surgery to place the GJ tube correctly. What was supposed to be a short surgery turned into six hours, and in the end, it was unsuccessful. The next day, it was attempted again, and this time it worked. They updated their followers, “The process of healing can now commence. Shout out to everyone feeding, dropping off goodies and taking care of our mom and dad duties back home. We can rest a little easier knowing that our other pride and joys are being well taken care of.”
On November 18th, Jaylen was discharged from the hospital to the Ronald McDonald House with his parents. Jeff wrote, “This is a great accomplishment. We are super proud of Jaylen and his determination. We still have a long road ahead of us. Nancy and I will be Jaylen’s nurses for the next couple of days, and then it will all be Nancy since I am heading back to Illinois to work on Monday.”
Throughout these weeks, and months, of the Nouds being away in Minnesota, the COTA for Jaylens Battle team members were feverishly planning and promoting fundraisers in Illinois. Unfortunately, their efforts were impacted by the ongoing pandemic. A volunteer posted on the COTA website that the Bowling Fundraiser scheduled for November 21st was being canceled due to Illinois imposing stricter COVID-19 rules. But they remained strong in their efforts to raise funds creatively and safely in the midst of a pandemic.
Nancy continued to post updates from Minnesota to let family members and friends know Jaylen’s recovery was going well. He was able to eat an increasing amount and array of food, and he was allowed to do an increasing amount of exercise, primarily walking. Jaylen was also starting to gain weight, which was a very positive sign of healing. He was starting to experience a lot less pain as well.
On November 28th Nancy posted: “It’s been an emotional night. It’s completely overwhelming to hear/witness the generosity of our friends, family and surrounding communities. Jaylen will someday understand the great things that have been done in his honor through COTA. For now, he says Thank You! As his mom, I am confident he will be reminded to always pay it forward in life as you have all done for him. To Jaylen’s team who made this possible, we thank you times infinity! Jaylen often tells me to ‘stop crying Mom.’ He’s such a strong kid and I try not to cry but some things just get to me. There’s so much good in our world now that I tend to forget on ordinary days. I sometimes cry because this is hard … hard to ask for help … hard to see your child struggle … hard to be helpless … hard to be away … But for today, THANK YOU for all you are doing and for making me HAPPY CRY!”
On December 5th she posted: “ONE MONTH MARKER! We are one-month post-transplant. We are truly blessed. We all miss each other; I keep telling myself we have a job to do here in Minnesota and there will one day be a silver lining. God has a plan here and in Jaylen’s soon-to-be pain-free life.”
On December 9th: “Surgeon said everything is great. So great we headed home after packing for hours. We surprised our family at home with a 1:00 am wake-up call. This is a scary time for us with COVID-19 and still having Jaylen’s medications and diabetes to manage, as well as his risk of infection. Very excited to be home, but super scared.”
On January 25, 2021, Nancy posted: “THANK YOU COMMUNITY! You people are truly amazing! We cannot begin to express our gratitude to everyone who has shown us love and support during Jaylen’s Battle. WOW! We are completely blown away at the funds that have been raised for COTA so we can be at peace knowing he will have a healthier and happier future.”
The COTA for Jaylen’s Battle team of volunteers had surpassed the $40,000 goal and raised more than $57,000 for a lifetime of transplant-related expenses. This victory was followed by a very big one on the court with Jaylen in February 2021. A friend in the crowd at a basketball game where Jaylen was allowed to play with his team for the first-time post-transplant, made this observation, “This may seem like a simple free throw and basket, but it’s much more than that. It’s a step forward, a goal met, a huge accomplishment! I am amazed and in awe of this kid. Jaylen has overcome so many obstacles since his TPIAT surgery in November. Making this free throw, playing nearly half of the game and making a total of three points is so amazing. Give him a round of applause. We are all so proud of you.”
In mid-March, basketball was wrapping up and Jaylen was in full force getting ready for football. There were still restrictions on Jaylen’s activity, but he was throwing the football, and running, without pain. Even the coaches were amazed at his effort and his never-say-never attitude. While his recovery has been challenging, his determined and warrior-like attitude have allowed him thus far to battle through it all and come out on top.
Nancy and Jeff are quick to add COTA has also been ‘a win’ for this family. “COTA has given our family peace of mind knowing friends and family members have donated funds in Jaylen’s honor that will help pave the future of this life-changing journey. This support, sometimes from complete strangers, was like a breath of fresh air before, during and after Jaylen’s surgery. For a transplant family, COTA is easy to navigate through an online portal and the staff is very accessible to answer questions and provide assistance in a variety of ways.”
“Knowing Jaylen has access to financial assistance for transplant-related expenses throughout his lifetime gives us comfort and takes away a lot of our stress, and will do so for Jaylen when he reaches adulthood,” they said.
Once Jaylen was back on the court … back on the field … back in the game … Jeff was able to reflect on their journey to date. He said, “At the outset Jaylen always had the mindset that this surgery was not going to stop him from doing what he enjoys. We are so grateful God blessed him with such determination. Twenty weeks after the TPIAT, he got to take the field again with his teammates and started to feel normal. The road has not been easy and we are still nervous when we see him out there, but hearing the excitement in his voice and seeing the smile on his face makes it all worth it.”
This Thanksgiving, the Noud household will likely be brimming with friends and family members gathering around their table … lots of food Jaylen will be able to enjoy … football games on the screen and likely in the yard … and a huge helping of gratitude for the many blessings in their lives.
November is Diabetes Awareness Month, which is a time when communities across the country team up to bring attention to diabetes. Diabetes is a disease that occurs when a person’s blood sugar is too high. It impacts about 37 million Americans, including youth and adults. Diabetes can damage the eyes, kidneys, nerves, heart … and is linked to some types of cancer. When establishing November as National Family Caregivers Month, President Obama said, “Each day, courageous individuals step forward to care for family members in need. Their quiet acts of selflessness and sacrifice tell the story of love and devotion.”
