Someone once said to me, “I don’t know how you do it.”
I told them, “I wasn’t given a choice.”
–Author Unknown

On July 3, 2018, we took Megan to her pediatrician for a back-to-school physical.  It was late in the day and we were just excited to check this off our list and go home to get ready for our 4th of July celebration with family and friends when our visit took a turn.  Megan’s Physician noticed that she had an enlarged spleen and immediately sent us for blood work.  They took nine vials of blood and sent us home.  Up until that point, Megan never had anything other than normal illnesses or injuries from being an active kid who was involved in cheer, swimming, and gymnastics or running around outside.  After our visit, we were a little uncomfortable but knew that her Physician was always very thorough and believe she was just being cautious.  We didn’t get scared until we received a call about 7:30 that night saying the results were not good and that we were being sent to an Oncologist and a Gastroenterologist for additional tests.  As we tried to enjoy our holiday as normal, the concern about what “could be” was in the back of our minds. The next three days were full of appointments and labs.  They took over 30 vials of blood during that time and scheduled us for a liver biopsy on the fourth day.

From that day forward for the next year and a half, we were still in shock that she was this sick.  You see, Megan was asymptomatic, and they believe this illness had been developing for four to five years, which turned out to be a blessing and a curse.  Had she exhibited symptoms we would have caught the illness early enough to correct with medication, but now it had developed past the point of no return.  It had developed to the point from “if” she would need a transplant to “when”.  The blessing was that she has not suffered from pain like many kids have.  She remained active in school and cheer but had to be careful due to the enlarged spleen.  She also had to give up many of her favorite foods due to the fact they believe she may have celiac disease along with autoimmune hepatitis.

During this process we had her evaluated at Children’s Mercy in Kansas City, Missouri; the Mayo Clinic in Minnesota; and finally, St. Louis Children’s Hospital.  It is believed that the autoimmune hepatitis caused her cells to start attacking each other which resulted in cirrhosis of the liver and subsequently caused the portal hypertension.  The pressure from the portal hypertension caused esophageal varices to develop, which required multiple surgeries to band the varices to prevent bleeding, as well as caused the formation of ascites fluid in her abdomen that had to be drained.  During all this we knew that we had to keep her mentally healthy and physically strong to face the fight in front of her.

A little over two years from her diagnosis, Megan received her transplant on July 17^th, 2020.  In less than four weeks post-transplant, Megan has been able to walk around the block and has regained full strength in her lungs and hopes to be able to return to school later in August.  We believe the preparation, both mentally and physically, is the reason she is bouncing back so quickly.  However, the pain from her nerves starting to fire again, the constricting of her rib cage, as well as internal pain from the transplant is all worth it for a bright future ahead.  The next year is crucial to her success.  The medication schedule and strength training will be a big part of ensuring long-term success and avoiding rejection.

Our family has partnered with the Children’s Organ Transplant Association to assist with a lifetime of transplant-related expenses.  Megan’s journey doesn’t end with transplant.  Please consider donating to COTA in honor of Megan to help ensure her long-term success.  See our blog for updates.

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.