A Liver for Langston

PLEASE HELP MY FAMILY!

I am leaving the original for many who haven't read about Langston, but providing an update:

Liver transplants don't just end with the transplant, well no transplant simply ends with a transplant. There are so many labs, so many doctor visits, and often many biopsies to determine rejection! Rejection is scored in grades: a score of 0-2 is no rejection, a score of 3 is borderline, a score of 4-5 is mild, 6-7 is moderate and 8-9 is labeled severe rejection/acute cellular rejection (ACR). His lab work showed possible rejection AGAIN, they check his complete blood count and tacro level. Tacrolimus is the most widely used immunosuppressant in liver transplant (LT) patients. These labs are done at Kings Daughters in Norfolk and are done one to three times a week depending on levels unless he is already in the hospital. Levels decide if a biopsy is needed. To do the liver biopsy, it is done with a needle. A small sample of the liver tissue is removed with the needle and it is examined under a microscope. A biopsy is done under local anesthetics to numb the skin. There are risks associated with the procedure which include bleeding and damage to the transplant but that is rare. We are currently waiting on the biopsy results from yesterday!

Unfortunately, for Langston it requires hospitalization, and mom (Victoria) and dad (Tim) have to be with him. Mom does dayshifts with him and Dad does nights. The hospital is three hours from home. For Langston...this is the THIRD biopsy in three weeks. Mom and Dad cannot work and bills are slowly adding up again and we didn't complete the first amount. It is enough to worry about your sick child, but to worry about your sick child and building expenses is OVERLOAD! To add insult to injury, a woman ran over the parking garage wall and landed on their vehicle at Kings Daughters where they went to have routine labs drawn. Their insurance did not include a rental but they have to have one. On top of that, a car in front of them on the interstate hit a deer and debris flew back and broke the windshield of the rental car. That is another unexpected expense of about 700.00 dollars. The woman that crashed into them at KD has insurance but until all is settled they are having to pay out of pocket. So all in all I am asking for everyone who can to PLEASE donate! And as always if you cannot donate...PLEASE pray. Our little guy has been through it. Hopefully, this will all slow up and many say it is not unusual for the first six months following transplants. We appreciate all who have donated and surely appreciate the prayers. Our family is GRATEFUL! Love to all! Below is the original post. I just wanted to update you!

A Diagnosis:

On February 8, 2022, my niece Victoria and her partner Tim welcomed a beautiful baby boy named Langston into the world. Within days of Langston’s birth, he was diagnosed with a rare genetic disorder called Citrullinemia Type 1 (CTLN 1). While appearing healthy, this disorder meant that Langston’s liver would be unable to produce an essential enzyme needed to remove nitrogen from the body after proteins in his diet were broken down. As an infant, Langston’s diet was limited to a special formula full of carbs and fats to make sure he consumed very little protein. He required medications to help break down the small amounts of protein he did need to eat to survive. And while this was more manageable for an infant, denying him food became more challenging as he grew older and wanted to eat with everyone else!

Langston’s best hope for a ‘normal life’ was a liver transplant. A new liver meant that his body could produce the enzymes needed to break down proteins and he could eat as anyone else can. A transplant, while he was young, meant that he could avoid some of the more serious problems caused by the buildup of Nitrogen in the body over time.

A Liver Transplant:

After many months on the transplant list, the family received the call that a liver would be available and they should report to UVA Children’s Hospital to prepare for surgery. On March 30, 2023, Langton underwent a nearly 12-hour-long surgery to transplant a new liver with a skilled surgical team! While challenging, the surgery was a success and the new liver showed signs of functioning right away. The next few days were spent in ICU, where Langston began to heal and try new foods for the first time. Some he LOVED and some he did not! He is a BIG fan of pepperoni pizza but he was NOT a fan of sticky peanut butter! Our family will never be able to express the gratitude we feel towards this donor and their family for the gift they gave to Langston and all of us!

Langston seemed to be recovering quickly and was out of ICU and in a step-down unit in no time! Then, he moved into a nearby hotel for isolation with his parents, Victoria and Tim, and regular monitoring at the hospital through lab work. On April 12, Langston’s blood work showed obvious signs of rejection of the new liver. While this is not unusual, and will most likely only require the adjustment of anti-rejection medications to straighten out, it is scary and does mean that Langston’s stay at UVA Children’s Hospital will be prolonged. The medical team is still working to figure out exactly how to manage this acute rejection in Langston. At this point, we are unsure of how long Langston’s hospital stay will be.

This Project:

UVA Children’s Hospital is about 3 hours away from home for Langston and his parents, who are both unable to work at this time. So as you can imagine, the travel expenses (food, gas, necessities, etc) are taking a toll on this young family along with their usual monthly expenses. In addition, Victoria and Tim are responsible for a $7,000 insurance deductible at this time, as well as ongoing copays. Therefore, we are hosting this GoFundMe as a way to help their family and allow these wonderful parents to focus on caring for and comforting sweet Langston and each other while he is recovering from surgery and fighting to use his new liver. This GoFundMe project’s goal is $8,000 to cover the deductible. All donations will be received directly by Victoria. If we meet this goal, we may host additional projects in the future to further help Langston, Victoria, Tim, and their daughter Emerie.

Our Thanks:

We love you all and appreciate all of the love, prayers, and support you’ve shown to Langston and our family over these past few weeks! Your support has done a world of good in lifting our spirits through these stressful days! Thank you in advance for any donations made and continued prayers!

All Our Love - The Stephens Family