June 1, 2018 – For years to come, June will be a month full of celebration and joy for the Terry family of Canfield, Ohio. But when their daughter, Jasmine, was born six years ago this month little did they know just two years later their adorable little girl would be diagnosed with a rare disease that would turn their family’s world upside down.
Jasmine was the first child for smitten parents, Jacquline and James. Their beautiful baby girl was definitely treasured and adored. However on July 31, 2014, during an age two pediatric check-up, Jasmine was diagnosed with a Urea Cycle Disorder (Ornithine Transcarb Amalyse Deficiency), which meant her little body was unable to process protein and properly flush out the ammonia in her blood. Ammonia in the blood eventually leads to brain damage. Sometimes these genetic defects can be managed with medication and special low protein diets, but after watching her closely for several months it was clear Jasmine’s case was on the other end of that spectrum.
At the end of May 2015 Jasmine became really sick and her ammonia levels spiked yet again. Jasmine was in and out of the hospital constantly and she just was not getting any better. Jasmine’s genetics team told Jacquline and James they needed to start talking about a life-saving liver transplant for their toddler. Jacquline remembers how hard it was to hear the news, but once they knew it was her only chance for long-term survival, they started researching and talking to other transplant families. Within a few months of hearing the news about Jasmine’s need for a transplant, they attended an informal transplant families’ discussion panel at Georgetown Medical Center.
It was after the Georgetown panel discussion that Jacquline and James knew what they had to do. Jacquline will never forget the messages shared that day from the panelists, “The post-transplant teenagers all said that if their parents could have given them a transplant at a younger age they would have wanted that to have happened. This was a game changer for us because we had been struggling with the idea of making such a monumental decision for our daughter who was just three years old at the time. We also heard a mother speak that day. Her two boys had the same condition as Jasmine and one died. It was not until her first son passed away that they tested the second for Urea Cycle Disorder. Her second son was then listed, quickly transplanted and he lived. This mom urged parents struggling with the transplant decision to not hesitate because she knew what it was like to lose a son and no parent should be in that position. It was a very emotional meeting. We were officially on board.”
After much research Jacquline and James chose the Children’s Hospital of Pittsburgh of UPMC due to the medical center’s excellence in the area of pediatric transplant. Jasmine’s transplant evaluation and testing was done in May 2016. It was during these tests and meetings and, at times, ‘information overload’ that a transplant social worker told them about the Children’s Organ Transplant Association (COTA).
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 June 26, 2016, a COTA fundraising specialist traveled to meet with the volunteers for the COTA campaign in honor of Team Jasmine T and walked the group of attendees through the entire process. 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 patient’s lifetime.
“COTA was a huge help to us in many ways,” said Jacquline. “And also for our COTA volunteers because working with a 501(c)3 charity made fundraising easier – more streamlined. Having a recognized and reputable national charity as your partner was a gift when it came to asking businesses for donations and individuals for contributions to COTA in honor of Team Jasmine T.”
Jacquline and James also had great experiences with Jasmine’s transplant team in Pittsburgh. Many members of Jasmine’s medical team knew her name and exact situation without ever looking at her chart when they walked into her room. This was a huge reassurance to Jasmine’s family that everyone was paying attention to exactly what their little girl needed. The family breathed a huge sigh of relief on June 1st when she was officially listed. Jacquline made sure there was a Big 4th Birthday Bash to celebrate Jasmine who had a great time celebrating with friends, family, presents and lots of fun.
Throughout the period of waiting, Jacquline talked with Jasmine often about what it would mean to get a new liver and all of the things she would be able to do with her new liver. Jacquline said she did so because, as a mother, she was afraid Jasmine would wake up after surgery and have no idea what was going on and why she was in so much pain.
None of the Terry family had to worry, or wait, for very long because on July 14th they received the call that a new liver was on its way. Many family members gathered that evening and sat in the waiting room all night as the team prepared to retrieve Jasmine’s new liver and bring it to the hospital. Finally at 7:30 a.m. on July 15th, Jasmine was taken back for her transplant.
According to Jacquline, “It was the most grueling and scary 10 hours of our lives. We were finally allowed to see Jasmine at 5:30 p.m. She was hooked up to a million machines. It was a very good thing that during our training the transplant team had showed us pictures of what to expect to see when we first saw her after the transplant. It was still startling.”
Jasmine spent the next two weeks inpatient working very hard to get better. She was released from the hospital with stitches still holding her closed, but the family was very happy to be discharged to a nearby hotel with their little girl and tons of medications. The next month was challenging taking her back and forth to the hospital from the hotel due to numerous appointments and tests. On August 8th as the surgeon was attempting to remove Jasmine’s stitches her incision opened up in the doctor’s office because her wound was not completely healed. The little girl was then rushed back into the operating room to get new stitches and start the healing process all over again. This took its toll on Jasmine and on her parents; this time it took months to stabilize her medications and her numbers.
Adding to her post-transplant complications Jasmine developed Posttransplant lymphoproliferative disease (PTLD), which is a cancer that sometimes occurs following an organ transplant. PTLD caused necrotic lymphomas to grow on her new liver. There was definitely a fear that Jasmine would need chemotherapy to shrink the lymphomas. Over the course of six weeks, Jasmine endured five biopsies to determine the most effective treatment moving forward. She had to have a PICC line placed in the event she would need special cancer treatment. Jasmine was sent home with the PICC line but less than a week later, Jacquline noticed Jasmine was itching non-stop. Gut instinct told Jacquline to take her to the hospital where they were told Jasmine had developed a blood clot at the tip of the PICC line. Injections were immediately started to help her body displace the clot and once again she was inpatient so the clot could be monitored and more biopsy results could be read. This time when she was released, the family had to employ a home care nurse to come and change her PICC line dressing once a week, which was torture for the four-year-old who was growing very weary and worried about constant medical tests and needle pricks including injections twice a day in her legs.
But Jasmine’s transplant journey story does get better. Today, almost two years post transplant, Jasmine is finally healthy and is enjoying spending time with her little sister, Josie. Jasmine’s transplant journey has taken its toll on all of the Terry family in many ways. Looking back, Jacquline is thankful they were surrounded by family throughout many difficult days and is extremely grateful for the friends and family members who have helped to raise funds for staggering transplant-related expenses.
“The Children’s Organ Transplant Association (COTA) really took the time to help us understand the importance of fundraising for transplant-related expenses. We had never really thought about fundraising, but once Jasmine was listed for a new liver a hospital social worker suggested we look into COTA. Without COTA by our side, Jasmine’s liver transplant would have easily bankrupted us. COTA helped our family stay financially afloat and optimistic during one of the most difficult times we could have ever imagined,” said Jacquline and James.
In March, the Terry family experienced another miracle when Julianna was born. According to Jacquline, Jasmine absolutely loves her new baby sister and is doing very well in school. Another blessing? Jasmine is preparing to finish Kindergarten, which is a milestone Jacquline says she never thought she would get to see.
Jasmine’s 6th birthday is just a few days away. Rest assured Mom and Dad and a ton of family members, friends and COTA volunteers are making plans for a Big Birthday Bash full of fun, food and presents including her most favorite Littlest Pet Shop figurines and My Little Ponies. COTA’s Terry family has a lot to celebrate this year.
Happy 6th Birthday, Jasmine, from your COTA Family!