“I’m currently sitting in a noisy hemodialysis center watching the time countdown at what seems like a turtle pace. My daughter, who is now three, just fell asleep amidst the chattering and chaos of other hemodialysis patients anxiously trying to finish treatment. We thought two years ago we’d be in a better place by now; dialysis free, line-free, submerged in bathtubs, and wearing zipper pajamas. Instead, we’re still buttoning the endless onesies with cords attached to a recently bald-headed little fighter… but we couldn’t be more thankful to have overcome all we have.
Rilynn was diagnosed with ARPKD (auto recessive polycystic kidney disease) in utero when I was 20 weeks pregnant, deemed unsurvivable. ARPKD causes cysts to grow on your kidneys. In Rilynn’s case, they grew so large it was preventing her from being able to breathe on her own. I remember watching her frail little body lying lifeless in her incubator, breathing in the warm heat of the ventilator while preparing myself for the biggest fight of my life.
At a week old, Rilynn had both of her kidneys removed and began dialysis. She spent the first 2 months of her life hooked to a dialysis machine 24/7. Over the course of a year and a half, she got down to as little as 12 hours a day hooked to her machine. It was quite a task keeping a toddler entertained on a 2 ft dialysis ‘leash.’ She went through multiple surgeries for a feeding tube, central line placement, hip surgery, and dialysis catheter revision all before the age of 1.
At this point, I’ve lost count at the number of times we’ve been told she wouldn’t survive. From a 95-day NICU stay to beating stage IV liver cancer just last fall, 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 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. I remember standing over the kitchen sink as I answered the call from the doctor telling us the cyst on her liver was indeed hepatoblastoma. My voice began to shake as I tried to hold it together to get my questions out. ‘Where do we go from here? Does she need chemotherapy? What stage is she?’ All the horrible thoughts piled in my mind but I was too scared to even ask them. I immediately called my husband home from work and the rest of the day is a blur of tears and heartache. A week later, we were in the hospital with a treatment plan, beginning the next phase of Rilynn’s journey.
Chemotherapy was not effective for Rilynn, it was keeping the cancer from spreading but it was not killing the tumors which had already grown. After a few rounds into chemo, it was decided her best chance 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 15 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. On June 12th, 2019, we woke up in our hospital bed early in the morning with the news they had found a match for Rilynn and the tears kept flowing. The despair that had sunk in months earlier that we wouldn’t find an organ on time was finally over. I knew at that moment Rilynn had a fighting chance to survive.
At midnight that day, we were finally down in pre-op and ready to send Rilynn back for the biggest surgery of her life. Saying goodbye to your child after signing the consent there is a chance she won’t come back is one of the most frightening things I’ve done. Trying to hold my emotions back and being strong in the face of my 2-year-old was all I could do. As she wheeled down farther away from me, I completely lost it.
Her operation went very well but the recovery was an up and down battle. She went back to the operating room six times and every time seemed to be harder and harder as she knew what was happening. Looking back at my updates from that day brings me to tears: As soon as she saw the anesthesiologist today she began to cry, ‘Mama, hold my hand’ as they rolled her further and further away from me. And I can’t. I can’t go with her. I can’t hold her hand. I can’t take the fear and pain away. And I can’t explain that to a terrified two-year-old. It’s the absolute worst pain I’ve ever experienced and it’s so unfair Rilynn has to keep reliving this.’
After almost two months in the ICU, we finally got to come home. Rilynn had to complete two last rounds of chemotherapy to get any microscopic pieces that might have been left behind. By October, Rilynn was finally deemed ‘in remission’ and all the pain and heartache slowly started to fade as Rilynn got a second chance at life.
About six months ago, we got to put a face and name to the little boy who saved her life. His name is Jackson. He was 4 years old when he went to be with Jesus and his parents chose to give us the ultimate gift of a lease on life.
I know Jackson hasn’t touched each of your lives in the way he has saved ours, but imagine losing your own child and sacrificing being by their side at his last moment to save another person. It is the absolute most selfless act we can never repay his family for. Every day, we try our best to keep his memory alive. As we celebrated Rilynn’s first anniversary from receiving her liver transplant we chose to do random acts of kindness, as we think Jackson would have done. And we got so many other people to follow along because of him. His motto in life was, ‘Always say hi to strangers, be goofy and laugh often, love and include everyone, and give the best hugs and kisses to those you love dearly.’ We want to make sure his legacy lives on by choosing to spread his love and unconditional kindness we’ve heard so much about.
We are still waiting for Rilynn’s kidney transplant as COVID-19 and other challenges have put a hold on the process. But she always overcomes with a smile on her face. I know Jackson and Rilynn would have been best little buddies and it warms my heart to walk past his picture every morning as a reminder to never take a moment for granted.”
This story was submitted to Love What Matters by Emily Payne. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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