March is National Kidney Month, which is a month-long, awareness-raising grassroots effort to spread the word across the country about the importance of kidney health. An East Coast transplant family knows all too well the life-saving difference a healthy kidney can make.
The Hoover family of Redding, Connecticut, assumed the role of transplant family with absolutely no warning. Theirs is the type of story that strikes fear in all parents’ hearts. Wyatt Hoover was born to his adoring first-time parents in April 2000. He was the light of their lives. His baby sister, Josie, was born a year later. Their family’s daily routines were much like those of their neighbors and friends. Wyatt soon fell in love with scouting and theater, which became passions for parents Herb and Jeanmarie as well. The Hoover Four had many great years of watching Wyatt and Josie grow up and become close as siblings. They played hard and they all loved each other ‘to the moon and back.’
But the Hoover family’s lives literally turned upside down in early June 2016 during Wyatt’s Boy Scouts’ summer camp physical. Wyatt’s mom, Jeanmarie, recently looked back and wrote a first-person narrative of their family’s transplant journey, and some of her thoughts are shared here:
It was June 2016 – the end of the school year. It is always such a busy time in the Hoover house. On top of the usual bustle, we were getting ready to move. At the same time we had to get Wyatt ready to go to his first real summer job as a residential camp counselor at Boy Scout Camp. Wyatt is an Eagle Scout. I picked Wyatt up from his high school finals and we drove to his camp physical at the pediatrician’s office. We had no idea our lives were about to change forever.
At the appointment we started realizing something was wrong. Wyatt’s hemoglobin came up way too low and he had lost over 20 pounds since the previous fall. Later Wyatt’s theatre costumer would tell me she had to special order a child’s size for Wyatt (for the spring production) as he had gotten so thin. Had we noticed anything else? Yes. Wyatt was utterly exhausted all the time and having trouble focusing in his classes. We had always thought he just was not a morning person. He always made the honor roll so we did not pay much attention to his tiredness. When Wyatt’s urine test came back hundreds over normal for protein our pediatrician told us it could be mono or Lyme disease or maybe even nephrotic syndrome and sent us to Hartford to the children’s hospital ER.
Truly unbelievable but within 24 hours of entering that ER our Wyatt, who had never had so much as a cavity, was having surgery to implant two dialysis catheters. We were told he would soon need a life-saving kidney transplant and a lifetime of immunosuppression.
Within the month we left the children’s hospital behind and transferred to Yale for Wyatt’s dialysis care while researching Boston Children’s Hospital for his kidney transplant. We spent the summer adjusting to dialysis and taking turns breaking down emotionally over the incredible loss we were feeling. Instead of camp and hiking Wyatt and I spent many warm summer days driving to Yale. We passed the time singing in the car to the soundtrack of “Hamilton” and it became a joyous escape for both of us.
In mid-July, upon a transplant social worker’s urging, Jeanmarie called the Children’s Organ Transplant Association (COTA) to learn more about fundraising for transplant-related expenses. 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 are tax deductible to the fullest extent of the law, and these COTA funds are available for the patient’s lifetime. On July 19th the Hoovers called COTA’s 800 number to learn more and they signed the paperwork and became an official COTA family soon after.
At the beginning of Wyatt’s transplant journey, COTA’s support was invaluable. Learning that we were not alone as a transplant family was a huge relief for us. COTA gave us guidance in choosing a team of volunteers to help with fundraising. COTA worked individually with our chosen team members to discuss ideas and fundraising guidelines. COTA gave a great deal of support to our team members and volunteers throughout the COTA in honor of Wyatt H fundraising efforts. They answered questions, helped with troubleshooting solutions, and provided easy-to-follow guidelines to assure the fundraising complied with all regulations.
Because Wyatt’s transplant was unexpected and completely unplanned for, the COTA in honor of Wyatt H team of volunteers quickly got to work planning fundraisers for transplant-related expenses. The Redding theater community and Boy Scouts all got involved to creatively raise funds for COTA in honor of Wyatt H. As Jeanmarie told COTA recently, the fundraising gave so many of their friends, family members and colleagues something tangible they could do to help. In very little time, the COTA team of volunteers raised nearly $75,000 for transplant-related expenses.
COTA also gave the team a fundraising website at no charge. Wyatt was even able to submit blog entries to tell his story in his own words. The blog provided a really positive and cathartic outlet for Wyatt. Through the website, supporters were able to contribute online after reading Wyatt’s blogs. Many contributors told us how excited they were to take part in such a wonderful community effort with such amazing momentum. Seeing loved ones, friends, colleagues, acquaintances and even people we have never met come together to support COTA for Wyatt H truly renewed our faith in the goodness of humanity.
Also critical to us is that contributors to COTA for Wyatt H knew they were giving to a legitimate and trusted 501(c)3 charity that is fiscally responsible. We never worried that people were going to ask us how their donation is being spent because it can only be used for transplant-related expenses. Many contributors have told us they feel completely confident donating to COTA — unlike when they are asked to donate to internet fundraising sites. They pointed out how some internet fundraising sites collect fees from both donors and the recipients while COTA does not charge any fees.
It gives us tremendous peace of mind to know that COTA will always be there for Wyatt.
By the end of August 2016 it was time for Wyatt to return to school to begin his junior year of studies. He was excited to receive his driver’s license on September 16th but a trip to the hospital four days later due to an emergency catheter breach brought his dialysis reality and eventual transplant back into focus. Amazingly through all of his health hurdles, Wyatt managed to play the role of the Narrator in the Joel Barlow High School’s production of “Into the Woods” during mid-November.
Wyatt worked at his junior year classes (two AP classes and an honors class no less) as I worked through testing to be his kidney donor. We were healing with the help of the love and support we felt from our community. During this challenging time, our friends came through for us and we will be forever grateful. Wyatt’s theatre group held a comedy improv night COTA fundraiser, his Boy Scout Troup held a Fright Night COTA fundraiser, and Wyatt’s old school (where Herb and I met in eighth grade) held a volleyball tournament COTA fundraiser. It all meant the world to us. We can never thank everyone enough for their support for our family and for COTA in honor of Wyatt H.
Once Wyatt’s first semester was over it was time for the transplant in Boston. With COTA’s help we stayed at the hotel next door and it became our home base. Wyatt was very scared but also very courageous. He went through the grueling process of bringing his immune system down so his body could accept my kidney. We were in it together and stayed with him until it was time for Herb to take me to my surgery. The team at Boston Children’s Hospital was amazing.
Because of our transplant team and COTA, we did not have to worry about having the proper care or how to pay for everything. Having those concerns taken care of allowed us to focus on Wyatt’s healing and mine.
On December 29, 2016, Wyatt received his Mom’s life-saving kidney at Boston Children’s Hospital. On New Year’s Eve, Jeanmarie was released from her hospital a few blocks away to visit Wyatt just three days after their surgeries. She was discharged on January 2, 2017, and went to sit at Wyatt’s bedside. On January 13th the Hoover family was able to return to Redding for their first weekend visit – Wyatt’s post-transplant surgical recovery was truly text book.
Today, Wyatt is in his senior year of high school trying to decide what is next for him. He still loves theater and being an Eagle Scout. Wyatt is contemplating pursuing a college degree in school psychology because he would love to help high school students in need of assistance while working with the high school’s theater program. Since his transplant Wyatt has had good days and bad days due to his many post-transplant medications. But as his family likes to point out, Wyatt is not only a survivor … he is a thriver and he will most definitely find his way.
According to Jeanmarie and Herb, “When we first heard our son was going to need a transplant, we were overwhelmed and had many questions. We wanted to get him the best possible care, but how could we afford it? From our first conversation with the Children’s Organ Transplant Association (COTA) we felt a huge sense of relief. Throughout our transplant journey to date, COTA has encouraged and inspired us. We always had great hope that Wyatt would have a bright and healthy future.”
“Having COTA by our side has helped us hold onto that hope.”