September 4th is Polycystic Kidney Disease Awareness Day, September is Childhood Cancer Awareness Month

National–September is a noteworthy month for the Payne Family of Michigan. September 4^th is PKD (Polycystic Kidney Disease) Awareness Day and the entire month of September is Childhood Cancer Awareness Month. While these awareness-raising days may not seem to be related, they are completely intertwined for this family who was dealt the blow of both kidney disease and liver cancer with their firstborn daughter.

Emily and Zack Payne were ecstatic when they found out they were pregnant with their first child. But what the young couple anticipated would be a normal pregnancy and delivery turned out to be anything but. At the 20-week mark in the pregnancy, they were in disbelief when they were told the child Emily was carrying would be born in kidney failure. Adding to their disbelief was being told numerous times the baby Emily was carrying would likely not survive.

Their daughter, Rilynn, was born in January 2017 and diagnosed with Recessive Polycystic Kidney Disease (ARPKD) upon her arrival. Due to the ARPKD diagnosis, the newborn had both of her kidneys removed when she was just a week old. Once Rilynn beat the odds and arrived, their next emotional struggle was not being able to hold their precious fighter until she was six days old. Emily and Zack were immediately thrust into parenting a medically-complicated newborn who required 18 hours of dialysis a day, weekly labs, feeding therapy, physical therapy and numerous medical appointments. In addition, at birth Rilynn was placed on two ventilators because her lungs were so compromised; Rilynn remained in the NICU for 95 days.

“Rilynn’s diagnosis brought so many emotions and fear … one being the financial aspect of raising a child who would need constant care, numerous hospital stays, countless medications and eventually a life-saving transplant,” Emily said. “Zack and I never planned on being a one-income household and I still remember the months of despair and agony as we tried to figure out how to make this work. My maternity leave was over before Rilynn was released from the NICU … in a hospital that was two hours away from our home. We had to make a difficult decision that ‘my job’ would be caring for Rilynn.”

During the long inpatient stay with Rilynn, Emily constantly worried about the cost of the highly specialized care their little infant was receiving. She also wondered about the cost of the kidney transplant that was undoubtedly in Rilynn’s future. A transplant social worker at C.S. Mott Children’s Hospital in Ann Arbor suggested they consider reaching out to the Children’s Organ Transplant Association (COTA) to learn more about how they might be able to help ease some of the young family’s stress. Emily called COTA in October 2017 to learn more about fundraising for transplant-related expenses. Just two days later their agreement arrived at COTA’s Indiana headquarters, and the Payne family officially became part of the COTA 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.

Later in October 2017, a COTA fundraising specialist travelled to Michigan and trained the family’s volunteers so fundraising for transplant-related expenses could get underway. The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA for Rilynn P was launched and the website was immediately available for online donations for transplant-related expenses.

Utilizing the COTA-provided website to update their friends and families, Emily wrote several detailed blogs about Rilynn’s ‘ups and downs.’ On November 17, 2017, Emily titled her COT

A Blog “From Worrier to Warrior” and here are a few highlights:

Tonight, as I was scrolling through Facebook I stumbled upon a new mom’s post, and I clicked to see what it was all about. Her writing was captivating, and I kept scrolling to hear her openly confess to the anxiety nobody told her about when having a child. I felt tears in my eyes and I had to stop reading. I longed for those issues to be what kept me up at night. I wished my baby could have been breast fed instead of being tube fed. I felt sorry for myself as I scooped Rilynn up to take her vitals before I had to hook her up for dialysis. She had been asleep, but like every other night I had to tip toe her onto the scale and get her weight. She is less than three pounds away from the minimum requirement to get a kidney transplant. We headed into our room and tried multiple times to get her blood pressure. She is such a trooper. This girl is so patient as that cuff squeezes her so tightly that it often times pops right off her arm. 91/53. I smile knowing that is a perfect blood pressure and dialysis is set up to match. I literally have to decide how much fluid to take off my child. I have to be her kidneys. I have to do it right. Based on Rilynn’s blood pressure and how she looks (puffy, sunken in, etc.) we have to choose which dialysis strength to use. As I put on my mask and gloves to connect her, I hear what sounds like a big blow out. We both smile and I laugh thinking at least I have this mask on. We laugh and smile more than most families do. Rilynn does not even know she has no kidneys. I am lucky enough to have the strength to not be anxious and to be proud.

After many nights of at-home dialysis with Mom and Dad at the helm, Rilynn eventually met the requirements to qualify for a kidney transplant. Emily and Zack were overjoyed that a living donor had been found who was a perfect match and was willing to give their daughter a second chance at life. Rilynn’s kidney transplant date was set for September 12, 2018, and the relief they felt once the transplant plans were in place was palpable.

“With the amazing help and guidance from COTA, our volunteer team organized successful fundraisers for transplant-related expenses, and it felt like another huge burden was lifted from our shoulders,” Emily said. “Our volunteers were able to reach the $60,000 goal set by COTA in a short amount of time. And in that moment of celebration and appreciation, we had absolutely no idea how incredibly important COTA was going to be to our family when Rilynn’s transplant journey took several unanticipated turns.”

A major unanticipated turn happened on August 10, 2018, when everything turned upside down for the Payne family. Emily remembers standing at the kitchen sink with tears rolling down her face, holding the telephone in a state of disbelief as Rilynn’s doctor said they had found cancer. Their baby … their precious Rilynn … had stage 4 hepatoblastoma, or liver cancer. Rilynn’s kidney transplant had to be cancelled and instead they found themselves back inpatient starting chemotherapy on their 15-month-old baby. After a few rounds of chemotherapy, it was determined the treatment was not effective in Rilynn’s case. The family’s only remaining option was a liver transplant.

Emily remembered, “We waited and waited and waited. The waiting was the hardest part — watching your child deteriorate, lose her hair, lose weight and have no energy while you sit there hopelessly watching and waiting. But nine months and 17 rounds of toxic chemo later, Rilynn received the greatest gift ever in June 2019 … a new liver from a little boy named, Jackson.” Rilynn was declared cancer free that December. While the news was the perfect Christmas gift for this family, it did come with a downside. Because of the major surgery that was required to give Rilynn a new liver, she was no longer able to do dialysis at home (peritoneal) as Emily and Zack had hooked her up to every night since her newborn hospital stay. Instead, Rilynn had to be placed on hemodialysis that required the family to drive two hours one way for her to receive the four-hour treatment at the transplant center. They would need to make this trip four times a week until she was able to be listed for a desperately needed kidney transplant.

In the midst of the many two-hours trips from their home in Gobles to the transplant center in Ann Arbor, Emily and Zack were surprised to learn Rilynn had a little sister on the way whose due date was April 2020. It was becoming increasingly urgent that Rilynn receive her new kidney prior to the new baby being born so the family of four could hopefully be under the same roof … in the same town … and not have to worry about hemodialysis trips any longer.

To that end, Emily and Zack were told Rilynn could be reevaluated for her kidney transplant in January 2020. But their matched donor was no longer available to give Rilynn her kidney. Another gift? A second living donor who had read about the family’s journey in local media coverage stepped forward to be tested. She was miraculously a match. But in January when the transplant could start moving forward, Rilynn developed a serious case of whooping cough, which postponed her kidney transplant again … this time until March 2020. And just when plans for Rilynn’s living donor kidney transplant were falling into place, the COVID-19 pandemic hit Michigan hard; Rilynn’s kidney transplant was postponed once again.

After another potential childhood cancer scare was put to rest following a bone marrow biopsy that came back negative, Rilynn was finally able to be scheduled for her living donor kidney transplant on October 27, 2020. Emily says she and Zack will be forever grateful to their real life donor angel, Tabitha – a stranger who was a perfect match for Rilynn.

The Community Coordinator of the COTA for Rilynn P fundraising effort was Rilynn’s grandmother, Heidi. After Rilynn received her new kidney, Grandma Heidi Keister said, “This should be our last major surgery. Rilynn is really looking forward to eating all the things she could not before and being able to drink water and getting in the bathtub and going swimming. These are things she has never done before. This transplant is totally going to change her life and make her feel so much better.” As the head of the COTA for Rilynn P fundraising effort, Grandma Heidi made and sold her homemade candles via Rilynn Rose Candle & Co. to raise funds for transplant-related expenses. Her efforts, as well as the many other fundraisers the COTA team organized, have been extremely appreciated by the Payne family.

Emily and Zack remember feeling overwhelmed when COTA’s online transplant expense calculator suggested a goal of $60,000. But when their amazing team of volunteers quickly surpassed that goal and raised more than $71,000, they were overwhelmed and filled with gratitude. Emily explained that due to the extended dialysis and the unanticipated liver transplant necessitated by Rilynn’s cancer diagnosis, their family’s journey was unique in many ways. She speaks highly of how COTA’s team of professionals worked to help streamline the family’s reimbursement process because of several complications with Rilynn’s medical diagnoses and treatments. COTA funds can also be used for living donor expenses, which is something else for which the Payne family is extremely grateful.

Rilynn is doing great, Emily said. She just celebrated her third liver transplant anniversary in June and will celebrate her second kidney transplant anniversary in October. The really big news is that Rilynn just started Kindergarten.

“Throughout all of these months of turmoil and unexpected diagnoses, absolutely nothing mattered more than keeping our daughter alive and being together as a family,” Emily said. “We gained the most important thing in the world — our daughter’s life, but at the same time we nearly lost everything else. Trying to juggle the nonstop medical bills, endless time off work, four-hour commute to and from dialysis, prescriptions and hospital stays nearly destroyed us financially. The successful COTA for Rilynn P fundraising effort saved us. None of us plan to have a child who has to travel a long and expensive transplant journey. COTA continues to allow us to breathe a sigh of relief knowing ongoing transplant-related expenses will be taken care of now … and for a lifetime.”

Editor’s Note: Rilynn’s Grandma Heidi is a true COTA Miracle Maker. She is now making and selling her beautiful candles via Rilynn Rose Candle & Co. as COTA fundraisers in honor of other COTA transplant kids, teens and young adults. Grandma Heidi is thrilled to be giving back in this way in recognition of Rilynn now being able to read books, swing on her swing set, play with her little sister Hallie and her bunnies, and finally take baths and go on long walks.

In 2012, President Barack Obama issued a proclamation that September would be, then and always, Childhood Cancer Awareness Month. Childhood Cancer Awareness Month is not just for those children who are fighting this horrible disease but also for those who have lost that fight … and their families. This month raises awareness not just of the epidemic that is childhood cancer, but also of the effects is has on the family that is fighting it right along with the child they love and cherish. PKD Awareness Day on September 4^th each year is a day dedicated to educating and inspiring friends, families and communities to learn more about Polycystic Kidney Disease. ARPKD is a rare genetic disorder affecting approximately 1 in 25,000 children, like Rilynn Payne.

For more information about the Children’s Organ Transplant Association (COTA), or to find a COTA family in your area, please email kim@cota.org.

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