June is a month full of family and fun, especially on the third weekend of the month when families gather to celebrate dads. Father’s Day has always been a special holiday for the Bogner family of Aledo, Texas. But this year it has even greater significance as the family of five will celebrate Father’s Day and the two-year anniversary of Cassidy receiving a life-saving kidney transplant from her dad.

From infancy, Nick and Renae Bogner knew a transplant was inevitable for their oldest daughter, Cassidy. At birth in December 2001 Cassidy was diagnosed with CHARGE Syndrome, which is a rare genetic syndrome that affected her heart, kidneys, hearing, vision, airways and overall stamina. Cassidy has undergone heart surgeries at three months, three years old and at 13 years old, and has made 30 other trips to the operating room for procedures including feeding tube installation, airway repairs and bladder problems -- just to name a few. Cassidy’s kidneys have always been closely watched by her medical team, and her parents have delicately protected them through diet and medication. According to her parents, “You would never know from her joyous, positive attitude the amount of work she has had to put in daily to manage her condition and protect her kidneys.” Cassidy is also deaf, which means that sign language is her primary form of communication.

Nick and Renae have always focused on managing Cassidy’s health so she could have the best life possible. In 2014, they prepared for a transplant because her kidney condition was declining. However, things ended up stabilizing and they were able to postpone the transplant for five more years. No matter what Cassidy is facing, enduring or waiting for … she always has an amazing spirit about her.

During 2018 the time had finally come to start the process for Cassidy to receive a new kidney. Her kidneys were getting weaker, which was affecting her energy level and overall health. The family started working through the transplant evaluation process at the Children’s Medical Center Dallas, which is about one hour away from the family’s home in Aledo. In November 2018 all of the test results had come back and the determination was made -- Cassidy was approved for a kidney transplant. During the transplant evaluation, a transplant social worker suggested Nick and Renae reach out to the Children’s Organ Transplant Association (COTA) to learn more about how they might be able to help.

“Cassidy has had several major issues her entire life and they have been extremely costly, and sometimes debilitating, to our family,” Nick said. “We had gone through all previous major medical procedures without financial support. So we knew firsthand how that felt and how it impacted our family.”

Nick reached out to COTA on November 19th to learn more COTA as an organization and as a potential avenue of support for his family. He and Renae spent time reviewing COTA’s online and printed materials and discussed how their family might be able to move forward with the national, nonprofit organization. Nick and Renae completed and submitted the necessary paperwork, and in early February 2019, the Bogner family officially became part of the COTA Family.

“The very first conversation I had with COTA’s leadership brought a huge dose of hope to our situation,” Nick said. “I hung up from that conversation feeling optimistic about being able to have a successful fundraising campaign for transplant-related expenses and what that would mean long-term for our family.”

The Children’s Organ Transplant Association (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 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 COTA funds are available for a lifetime of transplant-related expenses.

On March 15, 2019, a COTA fundraising specialist trained the family’s group of volunteers in Aledo, Texas. The COTA staff member talked to their neighbors and family members about COTA’s fundraising process and shared information about fundraising templates, fundraising guidance and the no-cost website they would be provided. The team got to work planning fundraisers for COTA in honor of Team Cassidy to help with mounting transplant-related expenses.

“Leading up to Cassidy’s transplant, COTA taught us that raising funds is actually OK to do. We had apprehensions regarding fundraising for transplant-related expenses at the beginning when COTA was first introduced to us,” Nick said. “COTA always showed support for our general wellbeing. They made us feel cared for beyond fundraising. I had a lot of confidence in the guidance, and the tools, we received from COTA.”

One of the COTA-provided tools Nick and Renae utilized to share their family’s transplant journey was the COTA for Team Cassidy website. Nick, Renae and volunteers shared the task of posting blog updates and their messages were powerful and inspirational.

April 23, 2019 – A Message from Mom: Today is a big day for our family and for this whole process. This is the moment we have been building up to for four years now. Today all the doctors who have been evaluating Nick will decide if they will allow him to donate a kidney to Cassidy. As I sit here writing this I am filled with anticipation, nervousness, and emotions. I also have all the worries that I carry with me. If they say yes, then we are starting this transplant journey which is overwhelming on all fronts. If they say no, then we have to start the donor work up all over again with me. I have no worries about going down that road myself, but the weight I carry is for Cassidy’s health. I am not sure Cassidy has time to wait for another donor to go through this process. If we must start this process again, then Cassidy will most likely need to start dialysis. All these years we have hoped we could go straight to transplant and avoid dialysis for her. So today I wait and attempt to leave all of my worries and anxiousness in God’s hands, trusting in His plans for each of us, but at the same time hoping Nick is approved so we can move on with this process and get my girl feeling good.

April 24, 2019 – The Best News Yet: For years I have had a deep desire to donate a kidney to Cassidy. I am fortunate to be a match. Tests have shown I have strong kidney function, and I have been healthy throughout my life. Years ago, around age 12, when we told Cassidy that her dad may be the one to give her a kidney, she reacted negatively. She did not want a boy’s kidney and thought it would be too big and had general anxiety about the whole thing. One day she came home from school really happy and said to Renae/Mom, “I was going to the bathroom and God said, let your dad give you a kidney.” Cassidy went on to tell her mom how she felt good about it and that she wanted dad’s kidney “because Dad is strong and she needs a strong kidney.” We have just received word that I have been cleared to be her kidney donor. We are so excited. And while this will be difficult for our family to endure, we are ready for Cassidy to have stable health and to get the energy boost she needs. Great things are coming.

May 6, 2019 – It’s a Date!: We are excited to announce surgery has been scheduled for May 20th. Cassidy’s surgery will be at Dallas Children’s and Nick’s surgery will be at UT Southwestern Hospital, which are near each other. Nick will be hospitalized a couple of days before he is able to be reunited with Cassidy. Cassidy’s hospital stay length is hard to predict because of the immunosuppressant medications, so anywhere between 1-3 weeks. Thanks to so many of you for all the support; we really feel it.

May 20, 2019 – Transplant Day!: We are so relieved and happy to report that Daddy looks good and everything went smoothly on his end. We are anxiously waiting for Cassidy to be finished too! (A few hours later) Cassidy is out of surgery and getting settled in the ICU. Everything went as well as can be expected. She is a brave little girl and I am proud beyond words.

May 21, 2019 – The Next Day: We have had a huge successful day! Nick was discharged from the hospital and reunited with Cassidy. Cassidy’s new kidney is performing awesomely. Her blood tests are showing numbers we have never seen before. Cassidy is getting stronger by the hour. She was moved out of the ICU this afternoon. We have a lot of work to do this week as she heals.

May 28, 2019 – Coming Home and Some Other Things from Dad: Today, just one week and one day after surgery, she is out of the hospital. She made steady progress all week and has shown us once again what it means to Fight Like a Girl! One week in the hospital is about as fast as it gets for a transplant. We are so proud of the courage and moxie she demonstrated all the way through this. We are also immensely grateful for the prayers and support by so many of you. We really felt all of it and know that y’all will be there for the next season of our journey.

One of the benefits of a living donor transplant is that a recipient can sometimes bypass the step of dialysis and go straight to transplant. We had always targeted to avoid dialysis but we almost missed it. Cassidy’s kidneys had been deteriorating at a fast rate and we knew we were close to their end. Had we not transplanted a few weeks ago, she would have had to start dialysis.

Going in for my kidney removal surgery on Monday morning was an awesome feeling for me. It was my own personal victory walk on this long journey. Even crawling onto the operating table in a big sterile room surrounded by robots in space suits brought me great fulfillment. Waking up was equally thrilled knowing my kidney was all but installed into Cassidy. The doctors later commented, ‘it was a good looking kidney’ which brought a proud smirk to my face.

June 15, 2019 – Father’s Day Tribute from Mom: It is often said in our family that nobody knows what to do if Mom is not around. But as I watch our kids grow, and as I have watched Nick through this process, it is extremely evident that he is a solid foundation for each of us. Our kids know their dad is always available and willing to do anything for them … including giving a kidney! I see him sacrifice, without question or burden, for the greater needs of our family.

As I sat in the waiting room on transplant day, the emptiness was thick. But when the nurse called to tell me his kidney had arrived and they were ready to put it into Cassidy, the emotions welled up. Here we were … the moment we had planned on for so long and the moment Nick had fervently worked toward for years. I had a feeling of pride that swelled within me as Nick’s act of love and sacrifice was saving our girl’s life. So this Father’s Day is extra special for our family. Thank you, Nick, for being my person and for loving your babies well.

Nick reports that he and Cassidy indeed made it through the transplant, but that some things continue to be challenging. “COTA continues to be super responsive to my questions and has solid command of the details regarding the financial side of a transplant. COTA has cared for and supported us broadly and consistently and we have seen firsthand the true character of this organization,” he said.

“One week before transplant, we received a call from the hospital requesting a several thousand dollar down payment for the estimated out-of-pocket expenses. Having COTA by our side meant we were able to solely focus on Nick’s kidney donation to Cassidy. COTA turned stress into peace of mind and gave us hope. COTA’s level of expertise, professionalism and stewardship allowed us to rest easy and continues to do so today. We are confident in the organization’s ability to navigate this journey with us … whatever that brings … for a lifetime.”

Nick and Renae wholeheartedly agree they experienced an unintended plus of working with COTA -- the powerful support from many loved ones, and strangers, who contributed, left messages, replied to blogs and followed the Caring for Cassidy Facebook page. Each of these actions was another statement of love and support that was felt and cherished by the Bogner family. “We felt the many people out there who were rooting for us and willing to fight with us,” they said.

Today, Cassidy’s fight continues. And currently it is a battle she is clearly winning. On Cassidy’s 18th birthday, Renae posted this message, “The other day at an appointment her pediatrician asked Cassidy, ‘How is your new kidney and how is your dad doing?’ Cassidy looked at me and signed, “I am over this story, and ready to move on.” My response to her was, “Baby girl, your story is never done and we will never stop talking about it. It is beautiful, full of miracles and perseverance. Happy Birthday sweet girl … your story is just beginning.”

According to Nick and Renae, “COTA has been such a blessing for our family in many ways and we are so very thankful for all they do. Even with the uncertainty in our world, it is good to know our family can count on COTA through it all.”

Enjoy Father’s Day, Bogner Family!