October is Liver Awareness Month:
A COTA Family is Celebrating Their Daughter’s Now Healthy Liver and Their Donor Family’s Selfless Decision
October 3, 2022 -- October is Liver Awareness Month, which is the month touted by the American Liver Foundation to raise public awareness of the importance of liver health. More than 30 million Americans, or one in 10 Americans, suffer with some form of liver disease. This October an Oregon transplant family is celebrating their daughter’s now healthy liver and is extremely grateful for the family who donated their child’s organ to save her life.
The Saemenes Family of Albany, Oregon, had no clue when the COVID-19 pandemic started spreading across the United States that safeguarding their family from the virus would not be the biggest medical challenge they would face in 2020.
Mom Jessye remembers the day in late February 2020 when she drove their then eight-year-old daughter, Delia, to get blood work done. Delia had been complaining about stomach pains. There was a suspicion she had food allergies that blood work would help pin down. Jessye had been noticing that Delia’s skin had become pale and there were dark circles around her eyes. However, the tests did not show any allergies and so the family of six continued navigating the unfolding pandemic. On March 19, 2020, while all the social and professional aspects of the family’s lives were in chaos, Jessye took Delia to the doctor because her stomach was bloated. The medical team reviewed the blood work taken earlier, examined her belly and immediately sent Jessye and Delia to OHSU Doernbecher Children’s Hospital Emergency Room in Portland, which was about an hour away from the family’s home. Imagine Jessye’s shock hearing this, “Your daughter is in liver failure and needs a life-saving transplant. We need to life-flight you and your daughter to Palo Alto, California.” Dad Nick was at home, now working remotely as a graphic designer for Oregon State University, along with the family’s other three children who were attending school from home as well.
Delia and Jessye were life-flighted to Lucile Packard Children’s Hospital Stanford in Palo Alto, California, within a couple of hours. Their home in Albany was 603 miles from Palo Alto, or a nine-hour drive. Jessye remembers, “Finding out your eight-year-old needs a liver transplant is a very stressful thing. Finding out your child needs a liver transplant IMMEDIATELY … in a different state … during a pandemic … without any warning or preparation is mind-blowing agony.”
Delia spent March 20th enduring many medical tests, pricks and pokes. And for the next three weeks, there were more tests, frequent blood draws and multiple transfers from the main floor to the PICU at Lucile Packard. Jessye, a pastor of the Hub City Church back in Albany, worked hard to remain strong for their frightened girl. She prayed and talked constantly to Dad Nick and their other children via telephone.
Jessye also had a conversation with two transplant social workers during these weeks of waiting for information about next steps in their journey. The social workers recommended she call the Children’s Organ Transplant Association (COTA) to learn more about how the organization might be able to help reduce some of the family’s mounting stress and anxiety. Jessye called COTA on March 25th and instantly knew they had to start working with the organization. The family’s agreement arrived at COTA’s headquarters the next day and the Saemenes 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.
Soon after the Saemenes paperwork was received, a COTA fundraising specialist trained the family’s volunteers via telephone due to COVID-19 travel restrictions. Due to the family’s urgent situation (facing an expensive transplant hundreds miles away from their home), fundraising for transplant-related expenses needed to get quickly underway. The COTA staff member shared information about COTA’s fundraising strategies (virtual and face-to-face), fundraising templates, guidance and support, and the no-cost website they would be provided. COTA in honor of Team Delia was launched; the team of volunteers quickly got to work planning and orchestrating COTA fundraisers.
“Everything happened so very fast. We had no idea what insurance would cover, no idea how much everything was going to cost, and we had loads of lovely, wonderful people offering to help us … but we had no idea how to best go about dealing with the offers of assistance,” Jessye said. “COTA stepped in and took a huge burden off our shoulders; the lifting of that weight was palpable. It was such a relief to let our family and friends know that 100% of the money donated to COTA for Team Delia would be used for transplant-related expenses.”
Once settled at Delia’s hospital bedside in California and waiting for ‘the call,’ Jessye started to blog (with the help of friends and family members back home in Oregon) on the COTA-provided website.
March 28, 2020: It’s been over a week now that we have been here. I don’t even remember last Saturday. Everything was such a blur, yet here we are finding ourselves in a second weekend. We have hunkered down with Little House in the Big Woods and coloring … This thing I am in, it’s dark. It’s heavy and it’s freakishly hard, but I am trying to find all of the beautiful moments I can to ‘treasure up’ in my heart and carry away from this place and this time. I keep thinking of Bilbo from The Hobbit as he climbs the tree off the path. He is at the top of the tree, and all looks hopeless, but he does not know he isn’t looking at the end. He is still too deep in. I keep thinking of Bilbo’s bravery and his intense desire for home even as he continues to walk the path forward.
April 1, 2020: Because of the COVID-19 situation, many of the consultations with the doctors have been moved to online video calls to protect Delia. This has the benefit of allowing Nick to participate from home in Oregon in almost all of the discussions about her procedures and treatments.
April 2, 2020: This morning was rough; it felt bleak and grey again. Both of us woke up tired, grouchy and just done with this whole situation. Today marks two weeks of unexpected separation and sadness … and we are both exhausted, homesick and just done. Luckily, we received some more packages today with letters and pictures and beauty and more chocolate. It reminded us both that, while we are by ourselves, we are not alone.
April 5, 2020: Hospital restrictions tightened quite a bit over the weekend and now everyone has to wear a mask all the time. (Delia and I do not when we are in her room.) I have been taking the stairs as much as possible and I nearly had a panic attack the other day because every time I inhaled while trying to climb quickly, the fabric of my mask sucked into my mouth and my body was convinced it was suffocating. So I am now taking the stairs a lot slower and my one option for cardiac exercise is on hold.
April 6, 2020: Delia’s 1A transplant status means we could get offers at any time for a new liver. Because of Delia’s condition and because COVID-19 has brought a lower number of available donors, they have decided to expedite having me evaluated as her living donor. Overall, I am doing extremely well with this. Last weekend I had sort of hit a wall and could not wrap my head around doing this any longer; waiting is so very difficult for me. Now we have direction, I have purpose and action and something to do that feels good. There’s still so much out of my control but for right now, this feels right, and I am at peace.
On April 8, 2020, Delia’s liver numbers dropped enough that she was moved to the top of the United Network for Organ Sharing (UNOS) waiting list for a new liver. Incredibly a liver match was found within 24 hours. Delia’s dad was able to fly to Palo Alto and be with his little girl for two hours before she was taken into the lengthy and complicated transplant surgery. Due to COVID-19 restrictions, only one parent was allowed to wait with her until the team came to take her into the operating room. This did not help an entirely emotional and fear-filled time for Mom, Dad and Delia.
April 8, 2020: Delia has a liver coming in tonight. To the family of the donor, if you ever read this, know Delia’s community is remembering you in prayer tonight and in the coming weeks. It is not lost on us that this night is very different for you.
Delia received her life-saving liver transplant on April 9, 2020, which was three weeks after arriving at Lucile Packard. While those three weeks felt like a lifetime to Jessye, Nick and Delia they were all extremely grateful that it was only three weeks. One week post-transplant on April 16th the family experienced a scare when Delia had to be taken to surgery and reopened for a reconstruction surgery to better connect her bile duct to her new liver. On April 24th she was discharged from Lucile Packard to an Air BnB in close proximity to the hospital for check-ups and blood tests. On May 25th, Delia and Jessye were allowed to return to the family’s home in Oregon -- much to the delight of Delia’s siblings, Elie, Lainey and James. Friends, family members and church members reached out in a variety of ways and offered a myriad of support and assistance.
“Once we returned home, I also received telephone calls and emails from COTA staff just to check in and see how we were doing and how they could help,” Jessye said. “Every COTA person I have talked to has been friendly and helpful. I cannot even imagine going through all of this without their resources, guidance and support.”
The COTA for Team Delia did an incredible job of fundraising for transplant-related expenses. In November 2020 the family was notified that COTA had awarded a Challenge Grant based on the team’s successful fundraising efforts.
“COTA stepped into our lives during the most traumatic, confusing moments we had ever experienced,” Jessye said. “We were not aware our daughter was in severe liver failure until we were life flighted to a transplant center 600 miles from our home. We cannot say enough good things about COTA. Knowing that COTA funds are available for a lifetime of transplant-related expenses gives us a sense of peace. Delia’s health issues will grow with her; it is such relief to know COTA will grow with her as well.”
March 19, 2021: It has been one year. The strange thing about having our big Life Changing Event happen during a worldwide pandemic is that for almost everyone, this week has been a delineation of Before and After. This year has sucked. And while I have withdrawn and grieved and processed, I have also been able to participate in mass grieving. The world is a different place than it was a year ago. Today will be a day of processing all that we have lost; the life without blood draws and liver numbers, the freedom of not having medication alarms structuring my day, the freedom of not having a child who is immunocompromised, the child whose life ended so my child’s life did not … but it will also be a time of gratitude. You all were good to us. I have never felt as loved as I did those two months in the hospital. In the worst time of our life, our community showed up and loved us well. So thank you.
Delia is doing well post transplant. She is in the 6th grade, loves reading and is a budding author works on her book every chance she gets. In July, she showed her rabbit in the 4H county fair and won Best in Show, which was a big milestone. She also loves dogs, cats, and kitten YouTube videos. Delia is an artist who loves playing outside and building Legos. Jessye describes her daughter as a child of contradictions and surprises. She is independent but snuggly, she is very shy but also unbelievably verbose. Delia is patient and easy going until she loses it and then she is capable of epic tantrums. She is logical and practical, but also imaginative and creative. Delia is so incredibly brave. “I wish I had not had the opportunity yet to know just how very brave she is, but I have been humbled and honored to see what an incredible kid we have,” Jessye said.
October is Liver Awareness Month. This month is set aside to recognize to the importance of liver health and the causes of liver disease. A healthy liver serves many vital functions, including breaking down, balancing and creating nutrients from food, storing energy, cleaning the blood, regulating blood clotting and fighting infections. There are more than 100 different liver diseases caused by viruses, genetics, autoimmune disease, excessive alcohol use, poor diet and obesity and reactions to medications, street drugs, or toxic chemicals. Many people with liver disease do not look or feel sick and are unaware that damage is occurring. Symptoms of liver disease can include nausea or vomiting, abdominal pain, fatigue, yellow-colored skin and eyes, dark urine and weight loss; however, symptoms can vary depending on the specific disease or cause of damage.
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.
COTA Kid Delia Saemenes
Liver Transplant Recipient
