There are certain events that you know in an instant will change your life. Hearing your doctor tell you you’re going to be a parent is obviously one of those. Hearing the words “there’s a problem with the baby” is another. That one feels devastating. Even that moment paled to the fear and despair my husband Dan and I felt when we first spoke with the neonatologist in charge of our week old son, Finn. They told us, “He needs a kidney transplant to live, so you need to prepare yourselves for him not to make it.”
So many questions immediately popped up next to the stark pain and doubts we felt... what does he mean “not make it?” Will Finn make it through the night? Next week? Next month? His first birthday?
I remember feeling despondent, but a fierce determination bubbled up. We were not about to give him up after having spent five months on total bedrest just to get this far. We told them they needed to come up with a plan for how Finn could survive, not plan for him to die. We had to try and figure it out.
Finn did not just survive - he thrived! He slowly started eating and growing and passing all the milestones set before him. First, they were simply milestones to grow. Ten pounds, twenty pounds and the magical twenty-two pounds, a transplant milestone that took over two years to reach. Having reached that goal, Finn’s doctors wanted him to grow even more to give him the best chance for the transplant to be successful.
That goal was no small task. For more than a decade, we went back for labs every few months and each time wondered what would happen next. Since birth we had to give Finn meds every day, but when Finn stopped growing we had to add six shots a week. It took the diligent work of Dr. Anne Beck and a host of other medical professionals at both St. Louis Children’s Hospital and Cardinal Glennon Children’s Medical Center to give Finn a chance at a normal life. Thanks to all the amazing medical professionals, Finn had the chance to pass many milestones just like any child. He went to school, made friends and played baseball. He likes to swim and ride his bike and play video games.
Finn has withstood the challenges with acceptance and composure but our hearts broke on the inside while smiling encouragingly on the outside. Finn never once cried when they poked him - but we cried ourselves to sleep at times. Finn just sat there in our lap until he decided he was brave enough to sit on his own. He now gives himself the shots everyday. Finn has endured so much in his nearly 12 years just to be like any other child and be a part of the group.
Last Christmas, within hours of opening presents, Finn was back in the hospital. He was dehydrated again and required around the clock medical attention. Dr. Beck took time from her own family celebrations to sit at Finn’s bedside. She explained to all of us that his kidney failure was critical - it was time to start planning his transplant. Dan and I were presented with the end of a decade of hopes, fears, and a lot of hard work and the beginning of a new era for Finn.
We have large loving families and an amazing group of friends. Finn couldn’t have made it without them. We also have the good fortune that Dan is a donor match, so we do not have to wait for another perfect donor. However, that means two separate surgeries, in separate hospitals, with separate recoveries. While helping both of my guys recover and caring for our three year old son Jack, I’ll still be working in a limited capacity.
As a result, the blessing of Finn’s transplant comes with a new hardship. We anticipate at least $50,000 in medical bills, home tutoring expenses, and help keeping our family afloat financially over the course of their prolonged recoveries. I need your help so I can be home as much as possible caring for Finn and Dan after their surgeries. We are dedicated to keeping Finn up with his classmates while he is out of school and Jack sure won’t let us forget about him.
Please help us by making a donation to Finn’s Medical Fund. The information for donating by mail or online is below. You can also help by passing this appeal along to friends and colleagues with big hearts and soft spots for a sweet, courageous child. The transplant surgery is scheduled for September 28th at 7:30 AM. Please keep us in your thoughts and prayers. Finn truly is a miracle.
With love and endless gratitude,
Anne, Dan and Finn
You can follow Finn’s and Dan’s recoveries by visiting: www.caringbridge.org/visit/finnshannon
Donations also can be mailed to:
Finn’s Medical Fund
2 Angest Circle
Saint Louis, MO 63119
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