In February 2006, our world was blessed with a beautiful baby girl, but little did we know how strong this young lady would have to be. Just before Cadence’s 4th birthday, we were hit with the news that no family ever wants to hear, our baby girl was sick and there’s no cure. After a long week of doctors appointments we were sent to Norton’s Children’s Hospital in Louisville, KY where she was initially diagnosed with Nephrotic Syndrome. As if that wasn’t stressful enough, we spent 15 days in the hospital that month and after her first kidney biopsy it was confirmed that Cadence has FSGS, Focal Segmental Glomerulosclerosis. As her team of doctors came up with a treatment plan and we were flooded with information about this horrible kidney disease, we had so many questions. What would be her new normal…steriods, monthly IV treatments, hospital stays, immunosuppressants, blood test, urinalysis, 18 pills a day at the age of four, and the list goes on. Cadence had a great team of Nephrologist around her at first but as things go between hospital and staff, doctors move away but little did we know what a blessing that would be. 

   

     We were told that a doctor from Cincinnati Children’s Hospital would be filling in at Norton’s while they were transitioning to their new staff, we had no idea that this would be an answer to our prayers. In walked Dr. Jens Goebal, with his German accent and Pumba (from the Lion King) on his stethoscope, this man overflowed with knowledge and understanding. We decided to follow Dr. Goebal back to Cincinnati Children’s Hospital when he was done at Norton’s, why not, when the 3rd ranked pediatric nephrology team in the nation is only another hour and a half further down the road. Upon a second kidney biopsy we learned that Cadence actually has collapsing FSGS, one of the most aggressive and rapid forms of the disease. We had the pleasure of having Dr. Goebal for about six years as Cadence’s doctor and I’ll never forget what he said at their last appointment. He told us that after reviewing her second biopsy that he would have thought she would have been on dialysis within two years and there she was six years later and she was still going strong. We greatly miss him and wish him the best in Colorado, but he left her in excellent hands at CCH.

 

    Cadence’s story hasn’t always been doom and gloom. She has had 10 years managed care with only daily medications and diet restrictions. Cadence enjoyed playing seven years of soccer during elementary school, she’s played softball, and been in the band. Just by looking you wouldn’t see a sick child that’s in the process of a kidney transplant, you would see a relatively healthy 13 year old with your typical teenage attitude. We have never tried to shelter Cadence from doing the things other kids her age were doing. She’s a straight A student, active in church, and her local 4H Horse Club. There have been some set backs along the way, in December of 2017 she was diagnosed with Crohn’s Disease on top of the FSGS but this has not slowed her down. We are so thankful for the blessings each day brings with her. 

 

    Over the past two years we have noticed a change in Cadence’s blood work and a slow decline. We have always known a transplant would be somewhere in her future, 5, 10, 20 years down the road we hoped. This past summer Cadence had a couple days where she just felt bad. She really couldn’t pinpoint it just knew something wasn’t right, she knew her body. She spent a few days in the hospital and after undergoing her fourth kidney biopsy, we learned that the disease had worsened. Cadence is now at 25% kidney function and is in need of a transplant. The treatment plan as of now is if we are fortunate enough to have a living donor then six weeks before her scheduled transplant Cadence will undergo a bilateral nephrectomy (removal of both kidneys), then six weeks of dialysis before her transplant, then finally the kidney transplant.

 

    Through you’re donations to COTA in honor of Cadence, 100% of the donations goes to transplant expenses. We live four hours away from Cincinnati Children’s Hospital in western Kentucky. COTA’s assistance will allow for Cadence to stay in Cincinnati during her surgeries and post transplant care, it helps ease the worries of the family so we can focus on our daughter’s health. COTA will stay with Cadence her whole life. As she grows older COTA funds will be there through adulthood to help her with the cost of medications, medical bills, and a second transplant if needed sometime related to her kidney disease. We ask that you share our story, pray for us, PRAY FOR CADENCE, and to give however you see fit. No gift is too small, God Bless!

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.