Jaylen's surgery info

Here is a link to Jaylen's COTA page (below).  COTA stands for Children's Organ Transplant Association and this is the organization that the Noud's have decided to use for Jaylen.  This organization helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support.  

COTA collects the funds and distributes them for the family.  COTA is a non-profit organization and there are no taxes or fees to the family EVER (like some other fundraising sights have).  These funds also follow Jaylen through his lifetime.  

To stay informed please subscribe.  You can make a donation to Jaylen's Battle directly from his page.  You can also stay informed on any fundraising/benefit events that will be held for Jaylen's Battle.

There will be information soon in regards to a Jaylen Noud - Built for Battle Benefit!  Thank you all for your outpouring of support and prayers for Jaylen and the family.  

 - Bekki

https://cota.org/campaigns/COTAforJaylensBattle/blog/our-story

Update from appointments in MN Sept 2020

As some of you may or may not know Jaylen’s specialist in Milwaukee referred us to the Masonic Children’s Hospital in Minneapolis Minnesota to get a consultation for TPIAT surgery. Jaylen was diagnosed when he was in 2^nd grade with acute (recurrent) pancreatitis due to a genetic mutation called SPINK1. 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 it's functions. There is no cure for pancreatitis, and it is a very unpredictable disease that causes him debilitating bouts of excruciating pain at very random times. This has not been easy on him over the years, but Jaylen has never let this disease define him or what he can and cannot do. TPIAT surgery can hopefully offer Jaylen a Pancreas PAIN FREE life, but it also comes with its own set of lifelong changes for him.

Jaylen, Nancy, and I traveled to Minnesota the first week of September to get a TPIAT surgery consultation and to see if he would be a candidate for this surgery. After a variety of tests and talking to numerous doctors and specialists over the course of 3 days, they determined that Jaylen would be approved for the TPIAT surgery. When we asked Jaylen how he felt about this, he did not hesitate in saying “I want to do it!” We were a little shocked by this because we had just gotten done listening to numerous doctors talk about how major this surgery is, the details of the surgery, the risks, how difficult the recovery will be for him, and the way it would change his life (good and bad). They did not hold anything back. This to me was a testament to how much pain he actually deals with and how awful of a disease chronic Pancreatitis really is. 

Jaylen was mainly concerned about when he can return to sports! If you know anything about our family, activities are what keep us all going and connected <3 Life of a teenage boy is football, basketball, track, and the newest golf. 

The recovery will be long for him and it will be taken day by day. A full recovery from this surgery can possibly take up to a year. The doctors and other TPIAT patients say that depending on the person, they can be ready for full activity anywhere from 3 – 10 months after surgery. There's no doubt that Jaylen will try to heal as quickly as he possibly can! Our main goal though for Jaylen is to heal properly and be able to live a Pancreas PAIN FREE (long) life! One thing we ask of anyone is to NOT treat him any differently leading up to this surgery. Jaylen will continue to compete and participate in anything and everything for as long as he can until the surgery is scheduled (docs are aiming for November). Most importantly, Jaylen needs the hope and motivation that he may have a chance to participate and not have to worry about too much pain while doing so. We think prayers, positive attitudes, words, and efforts can really go a long way in how his recovery goes. 

Here is a very brief description of the TPIAT (Total Pancreatectomy and Islet AutoTransplantation) surgery that Jaylen will have done (We have also attached a short video explaining the surgery. This is 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 (produce insulin for your body) that they can. 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. Depending on how the liver performs, there is a possibility that it can produce enough insulin for his body to where he does not have to be insulin dependent (diabetic). The islet cells in his liver can last on average 3 to 10 years, but the longest someone has been insulin free is 20 years post OP. If his liver does not do well, he could be insulin dependent right after the surgery for the remainder of his life. This is the trade off with getting this 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. Jaylen will also need to be on a feeding tube for quite some time after surgery. After surgery he will spend at the minimum, 1 week in the ICU and hopefully start his physical therapy. After 2 -3 weeks he should be able to leave the hospital, 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. We want to thank you all for your continued prayers and support for Jaylen and for taking the time to read this. Our family is so grateful for all of Jaylen’s great teachers, coaches, friends, and family! We will need all of you in the months to come!

Much Love – The Noud Family

JAYLEN NOUD – BUILT FOR BATTLE    

https://www.youtube.com/watch?v=yJMmbZuVAJ0

Color It Purple

July is "Color it purple" for pancreatic diseases. Copy and paste to order shirts (link below) to help fund the National Pancreas Foundation. Spread awareness. Shout it that you know someone with chronic pancreatitis. His name is Jaylen, he's endured pain that a grown man wouldn't be able to handle, and he is ONLY 14 years old. 

https://www.customink.com/fundraising/npfcoloritpurple?share=8941594958588526

Thank you- flare fizzled finally!

Thank you all for the prayers, happy thoughts, kind words and actions. Pancreatitis sucks. 

❤️Jaylen is feeling back to himself - God is good ♥️

Prayers please

First really big flare since March/quarantine. 

His flare is on day seven. 

Please keep Jay in your prayers and thoughts.

It is unimaginably painful for him.

2020 Never Stop Expecting A Miracle 2020

Heroes come in ALL sizes

The end of 2019 had brought many days of missed school and the longest "episode" to date of pancreatitis for Jay.  He now has a team of doctors at Children's Hospital: Pediatric Pancreatitis doc, Pain doc, and Psychologist.

From May 2019 to October 2019, his elastase test results have dropped (measures the function of the pancreas), categorizing him as an EPI patient.  EPI is short for Exocrine Pancreatic Insufficiency.  EPI is a condition characterized by deficiency of the exocrine pancreatic enzymes, resulting in the inability to digest food properly, or maldigestion. This is caused by a progressive destruction of the pancreas and it's tissue. Here is a link better describing EPI... https://pancreasfoundation.org/patient-information/ailments-pancreas/exocrine-pancreatic-insufficiency-epi/

This means that his disease is still progressing. In order for him not to become malnourished, he needs to take more medicine to help break down the food every time he eats. Three pills for every meal, and two for every snack. 

Here's just a glimpse of a normal day full of pills...  3 viokace with breakfast, 2 with snack, 3 with lunch, 2 with a snack, and 3 with dinner. Then before bed: 1-2 vitamins (right now selenium, vit C, D, or E), 3 gabapentin, and 4 other supplemental gummies (fiber and vit B).  He gags and almost always has to be reminded to take his medicine, but I guess if I had to take that many, I'd avoid it as well.

Oh and on bad days, add a few more pain relievers and the newest --migraine nasal spray.

Jaylen is trying to keep up with everyone, even though we can tell his body is worn out some days. Basketball and weight training keep him active for this season. He asked me this year if he has a disease. It was extremely hard to explain chronic pancreatitis to our 14 year old without scaring him or crying.

H.O.P.E.
HOLD ON PAIN ENDS

https://pancreasfoundation.org/patient-information/childrenpediatric-pancreatitis/chronic-pancreatitis-in-children/

July 2019 Update

Yoga Study

Paying close attention to instructions

Favorite eats after Milwaukee trips

Coloring it purple for pancreas disease awareness month--JULY

Jaylen had a follow up appointment at the end of May with Children's Hospital of WI. Dr. Goday had mentioned that he thought Jaylen has become chronic because of the episodes being so close together and less intense now. This is a normal path for chronic pancreatitis.  I didn't really want to face that his acute recurrent has now become chronic, but I guess we don't have a choice in the matter. Doc ordered a follow up elastase test, MRCP (MRI with contrast), and wanted him to start relaxation techniques to try to help manage pain. Jay also got to participate in a yoga study. This study, from what I gathered, was going to measure the level of inflammation before and after yoga poses. It will be interesting to see results, but I'm sure the study will have many participants and take a lot of time. His doctor and I discussed starting him on the drug gabapentin, a nerve blocker, to try to keep his small flares from keeping him out of school. We had reviewed amitriptyline, but Jay's heart showed borderline QT, preventing him from starting that one. The script was filled and Jay started the meds after school let out the beginning of June. Anything to help at this point would be lovely.

Fast forward to July 2nd- MRCP and relaxation techniques. He did awesome in the MRCP machine, laying still so they didn't have to do anything twice.  He also learned so much from the psychology/pain management department on how to relax his body during an episode. We came home with a lot of information.

Results came back for elastase test-- the test showed 342 ug so his pancreas is still at a normal range when it isn't in a flare. This just means that aside from malfunctioning with pancreatitis, it still does its job outside of an episode.

MRCP shows more narrowing of some parts of the pancreatic duct, which is consistent with chronic pancreatitis.

Vitamin levels are good, liver, gallbladder, spleen, adrenal glands, kidneys, ureters, bowel, lymph nodes, abdominal wall, and bone imaging appear all normal.

Jay continues to have small episodes about every other week where we control pain from home. We use the tools given to us along with tylenol and ibuprofen. Couple weekends in July have brought more severe episodes, but he always perseveres! Warrior child! Still praying for healing and strength for our JJ.

Pancreatitis sucks...