By Emily Payne, mother of Rilynn
An update on an aakpRENALIFE cover story from March 2018 on The Payne family. Baby Rilynn, who was diagnosed with ARPKD in utero, has now also beat stage IV liver cancer, and the family anxiously awaits clearance to receive a kidney from a living donor. Read as Rilynn’s mother, Emily, shares an update on her journey with our readers to give hope and faith.
I’m currently sitting in a noisy hemodialysis center watching the time count down at what seems like a turtle’s pace. My daughter, who is now almost three, just fell asleep amidst the chattering and chaos of other hemodialysis patients anxiously trying to finish treatment. If you’ve been following along with AAKP you may have read the article I had written a year and a half ago. A lot has changed in that time, and in a way I never imagined. We were supposed to be in a better place; dialysis free, line free, submerged in bathtubs and wearing zipper pajamas. Instead we’re still buttoning the endless onesies with cords attached to a little bald-headed fighter.
Rilynn was diagnosed with Autosomal Recessive Polycystic Kidney Disease (ARPKD) in utero when I was 20 weeks pregnant, deemed un-survivable. At this point I’ve lost count at the number of times we’ve been told she wouldn’t survive. From a 95-day Neonatal Intensive Care Unit stay to beating stage IV liver cancer just last month, you could say she’s a living breathing miracle. You wouldn’t know she’s endured so much by watching her, her happiness and joy continue to teach me how to live life to the fullest despite it all.
In August of 2018, we were less than a month away from Rilynn’s kidney transplant. She had spent a year and a half on peritoneal dialysis (PD) and we had searched for months for the perfect living donor to give her the gift of life. We found that donor, but we also found cancer... and our world stopped turning in that moment.
I don’t ever want to dismiss the hardship and pain that kidney disease has caused us and many others, but the phrase ‘it could always be worse’ really took on a new perspective as we navigated our new life of cancer and the fear of not beating it. Chemotherapy was not effective for Rilynn, it was keeping the cancer from spreading but it was not killing the tumors that had already grown. After a few rounds into chemo it was decided that her best chances at survival was to receive a liver transplant. She needed a full liver of her size in order to have what doctors thought would be a successful outcome. It took 9 months to receive that organ and 17 rounds of toxic chemo. The waiting was the hardest part, watching your child deteriorate, lose their hair, weight, and energy while you sit back hopelessly, forever changes you as a person. Knowing that there are parents out there right now about to celebrate their first Christmas without their child, the child who saved mine, gives me an odd strength to keep pushing on. If they can continue showing up for themselves, their other children, their friends and family, I can keep showing up to fight too. In their darkest hour they chose to bring light to another family and for that I will live my life sharing our story, sharing our faith, and trying my hardest to keep their child's memory alive.
I don’t walk into the grocery store the same way anymore, watching people’s faces and wondering the pain behind their stories. We all have them and the pain cannot be put on a scale of comparison of “who has it worse.” But I think we can all agree that we can choose how we handle what’s been dealt to us and make the most of the days we do have.
We are now back on track to where we were almost 2 years ago. Rilynn is cancer free and set to be cross-matched to her living donor in January. As long as the donor is still compatible, a date will be set for her to receive her kidney. Just in time for Rilynn to become a big sister in April!
If I can share any advice as a parent, it would be to take care of yourself as well. Cancer was something much harder on me that completely drained me. I had to learn how to survive on the days I thought I couldn’t go on anymore. For me that looked like making sure I ate a beneficial meal and I took 30 minutes of each day to do a workout at home. I also began therapy and allowed myself to feel the pain and talk through it. I’m sure you’ve heard it before but it's so true “you cannot pour from an empty cup.” If you can’t find the energy for yourself, you cannot be the best advocate for your child.
Follow Rilynn’s journey on Facebook at: https://www.facebook.com/rilynnrosepayne/
Read the AAKP’s article “A Mother’s Story…Worrier to Warrior” on the Payne family in March 2018 issue of aakpRENALIFE: https://aakp.org/magazine-id-10915