Bloomington, Indiana – October 2, 2017 – October is Liver Awareness Month, which is the month used by the American Liver Foundation to raise public awareness of the importance of liver health. More than 30 million Americans have some form of liver disease. This October a Missouri family is thrilled to be celebrating their teenage son’s now healthy liver and his second chance at life.
Spencer Vincent was born to ecstatic, first-time parents, Heather and Stuart, in July 2001. Spencer was a happy baby and things seemed to be going well with his development and growth. However the day before his third birthday, Spencer was diagnosed with primary sclerosing cholangitis (PSC). PSC is a relatively rare disease of the bile ducts that impedes the flow of bile to the intestines, which can lead to liver failure. The cause of PSC remains unknown. What is known, however, is that a liver transplant is necessary once PSC is diagnosed.
Spencer’s PSC was controlled with medication for the first year following the diagnosis but over time the toddler started to get more infections in his liver and the scarring in his liver worsened and his bile duct blockages worsened. Over time, he had many stents placed in his liver and his gall bladder to help open up the bile ducts to try and keep bile flowing from his liver, through his bile ducts and his gall bladder/spleen/intestines and into his stomach. Once the medications ceased to control the PSC without causing irreparable damage, Spencer was repeatedly in and out of the hospital and would also have to be hooked up to IV antibiotics at home. His energy level plummeted over time and he was in constant pain. The little boy who loved playing baseball with his buddies could barely hold a bat as the PSC progressed.
Spencer and his family simply learned to ‘deal with’ his PSC as the years went on. He missed a lot of school but during this time the family welcomed Spencer’s little brother, Tyler, who became a great friend, and pain diversion, for Spencer.
Spencer spent New Year’s Eve 2014 in the hospital and was, again, in and out of the hospital for much of 2015 as his PSC worsened. His medical team tried desperately to treat his diseased liver while managing his intense pain. As the disease and the pain levels progressed, the transplant team at St. Louis Children’s Hospital finally decided there was no other option than to add Spencer to the liver transplant list. Spencer was added to the liver waiting list on November 19, 2015. It was also in November 2015 when Heather was encouraged at one of the family’s transplant introduction sessions to reach out to the Children’s Organ Transplant Association (COTA) for help.
“The entire COTA staff was supportive, kind, friendly and helpful from our very first call and for every call and interaction after that initial contact,” said Stuart. “COTA provided an outstanding, well planned, structured process and provided our volunteers with a thorough and relatively painless fundraising strategy. COTA’s templates, expertise, recommendations and personal support throughout Spencer’s transplant journey gave us, and our family and friends, an amazing gift that we will never be able to repay.”
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. COTA is a 501(c)3 charity so all contributions to COTA in honor of Team Spencer V are tax deductible to the fullest extent of the law, and these COTA funds are available for his lifetime.
The COTA in honor of Team Spencer V volunteer group had at its helm a well-known teacher from Nipher Middle School in Kirkwood, Missouri, which is where Spencer was a student when his health allowed him to be in the classroom. Florence Borman teaches a class called The Power of One at Nipher Middle School and for the 2015/2016 school year she and the students in that class decided to make their focus Spencer and the COTA fundraising effort that was being launched in his honor. Each year, the purpose of the class is to undertake a project where the students experience how one person can make a difference. According to Ms. Borman, “My Power of One students are so excited about things and so passionate … and I saw that coming through with how much they loved Spencer and wanted to make sure they made a difference in his life.”
In addition, Ms. Borman kept the entire school population and the Vincents’ friends and family updated about Spencer’s health situation utilizing a texting system that Spencer’s parents were able to use to send updates as well. Here are a few of the messages that were sent:
November 13th: Today we heard about all the possible complications and risks involved which are substantial, but they feel that with how sick Spencer’s liver is this is the right choice.
November 17th: We are back in the ER with Spencer now. He has a fever and another infection.
November 19th: The pain team will meet with Spencer later today and try to figure out a better plan for his pain.
January 11th: We just got the call and have Spencer in the car heading to St. Louis Children’s to get his liver transplant. OR is scheduled for this afternoon. Love you all!!
January 11th (Later): The transplant surgeon just came in and talked to us and she is happy with how the surgery went. She said the next 72 hours are critical. You have no idea how much each of you mean to us. I can’t begin to thank you. Will you please say a special prayer for the donor family and all they have lost and the amazing gift they have shared with us?
January 14th: Rough night for Spencer. One of his IVs came out by accident and we had to hook everything up to his port and then start a new IV, which was not easy. He has been stuck so many time that his veins collapse when they stick him. He has a fever of 102 and they think it’s because his lungs aren’t working hard enough so he has to get up and really start moving today. We will keep you updated.
January 17th: Spencer had a great night and all of his labs continue to look good. He is walking around more and got of bed without help for the first time. If no surprises, we should get to go home tomorrow one week after transplant. The power of prayer!
January 22nd: We just talked to the transplant coordinator and Spencer’s anti-rejection levels are perfect. His new liver is still happy in its new home. Thanks for everything.
Nipher students sent many well wishes and cards to Spencer before, during and after his liver transplant. When Spencer miraculously returned to school on March 22nd (less than three months after his transplant), he was greeted by giant ‘Welcome Back Spencer’ signs with personal messages from many students. But the moral support was just part of what ‘The Power of One’ was heading up at Nipher. Those students, i.e. COTA Miracle Makers, were orchestrating fundraisers for COTA in honor of Spencer and along with the Kirkwood, Missouri, community had already raised $30,000. They also hit a home run when they planned a ‘Take Me Out to the Ballgame’ Trivia Night later in the spring that helped reach their goal of raising $50,000 for COTA in honor of Team Spencer V.
According to Ms. Borman, “I really try to teach these students they can change the world by helping people. Once they see what is possible, positive ripples spread out. My goal is to teach them they can each do this out in the real world because they already are.”
The Vincent family has been overwhelmed by the school and community’s financial and emotional support. Spencer was simply blown away that almost every student at Nipher Middle School reached out to him with a message of support or participated in a COTA fundraiser. Heather and Stuart recently sat down and made a list of things their family had learned from Spencer’s transplant journey:
- Be appreciative of people who donate organs.
- Living by St. Louis Children’s Hospital is a blessing.
- Quickly learn to accept help, no matter how hard it is to do.
- Never hold back a question with a medical team.
- Life goes on even when you have medical challenges.
- Talk to people who have lived the experience.
- Share your story so other transplant families can benefit.
Today, Spencer has returned to playing baseball for his beloved Yankees baseball team, swimming and just being a teenager. He has been able to return to Six Flags St. Louis and once again enjoy his favorite attractions with his friends. Spencer’s hope for the future is to be able to live pain free and to possibly become a transplant surgeon so he can help others medically the way he has been helped.
Ms. Borman’s lesson of ‘The Power of One’ indeed continues to resonate.
