Eleven-year-old Jaxson is the third son of four boys to parents, Ryan and Kate from Wentzville, MO. Like most eleven-year-old boys, Jax has a passion for gaming – especially for the game Fortnite. He spends a lot of time on Fortnite, has a love for the outdoors, loves the beach, loves camping, loves his family, cheese pizza and animals. “Jaxson has always been a very content child,” comments Kate. “Unlike most kids, he honestly doesn’t have a long list of wants and is content with the things he has in life” says Kate, “And he’s always thinking of everyone else but himself,” she says.
In comparison to his peers, Jaxson was always on the smaller side of the growth chart. After years of asking questions about his growth to the pediatrician, Jaxson’s parents took him to an endocrinologist late in 2021 in hopes of finding a solution. During a routine workup, the endocrinologist discovered multiple elevated lab values and quickly referred Jaxson to a nephrologist. The nephrologist ran some more tests and ordered Jaxson to have a kidney biopsy on January 11, 2022. The biopsy revealed shocking news that Jaxson had stage 4 chronic kidney disease. Upfront treatment involved stabilizing his kidney function to preserve the kidney function that he had. Ultimately; however, Jaxson would need a kidney transplant.
The diagnosis was devastating and Jaxson had a hard time understanding why this was happening to him. He went from taking zero medications – to a long list of medications taken at different times throughout the day. There were frequent pokes and blood draws and the family had to make multiple adjustments in order to accommodate treatments and Jax’s newly-compromised immune system. Kate stepped down from her position at a local elementary school to facilitate Jaxson’s care. Ryan (a firefighter) worked extra shifts in order to make ends meet. Jaxson’s three brothers (Ryan, Grayson and Caden) made adaptations, as well. They were not only worried and concerned about their brother, but they had to miss school, sports and cancel plans throughout Jaxson’s frequent admissions to the hospital. “Kidney disease does not just impact the one who is battling the disease. It definitely impacts the entire family,” Kate said.
From January through March, Jaxson and his nephrology team worked to find the right combination of medications to keep his kidney function, blood pressure, blood counts and fluid balance stable. “It was a constant dance between different blood pressure medications, steroids, fluid restrictions and low sodium diets to say the least. His blood counts and labs seemed to be all over the place,” said Kate. Jaxson had a hemodialysis catheter placed on March 9 and the plan was for Jax to have outpatient dialysis treatments Tuesdays, Thursdays and Saturdays at the hospital with the ultimate goal of getting his new kidney when the time came. “Jax did great with his surgery and I can’t say enough good things about the staff. The OR staff, the nursing staff, the phlebotomist team, the transport team – all were amazing and they really make everything the children have to go through much more tolerable,” said Ryan.
The stress of being at dialysis three days per week for 3 ½ hours each time took its toll on Jax’s family. Leaving home no later than 6:00am; driving from Wentzville (45 miles) while juggling 3 other boys and getting them off to school; navigating Ryan’s work schedule and trying to maintain normalcy at home and in life; it was exhausting. In April, 2022 Jax underwent another surgery to place a peritoneal dialysis catheter in his belly. After a 2-3 week healing period, Ryan and Kate were trained how to work the dialysis machine, troubleshoot, take blood pressures and change catheter dressings. They learned signs and symptoms to look for if Jax was to need additional care, which fluids to use, how to add medication to the fluid and even subcutaneous injections. “Even though there is a lot of work that goes into peritoneal dialysis, there were so many advantages to it. It’s easier on the body and doesn’t make you feel exhausted like hemodialysis does. Jax would also have more freedom when it came to food and drink choices which is huge being his age and just wanting to be a kid. I was confident that Ryan and I as a team would be perfectly ok and do great at caring for our boy at home. Jax would have dialysis at night through that catheter while he slept instead of having hemodialysis at the hospital. It was a game changer for both Jaxson and our entire family,” said Kate. “These months were some of the toughest times our family had ever been through. I’ve never felt so lost, broken and defeated. As a parent, you’re supposed to be able to fix all the problems. This one I couldn’t. But I knew I would do anything to make sure my son had the best care possible,” Ryan said.
The family would do peritoneal dialysis at home until transplant was an option. On May 10, the nephrology physician team declared Jax as having end stage renal disease (ESRD). This is not easy news to hear for any family. However, it DID mean Jax was one step closer to transplant. On May 24, Kate and Ryan met with the transplant team to begin the workup for transplant, although due to many factors, he was not yet eligible to be on the list to receive a kidney. Between the dialysis 12 hours per day, multiple doctor visits, hospitalizations and more, Ryan and Kate weren’t sure that a summer vacation or travel would be possible; however, through communication and transparency between them and the nephrology team, they were able to make it happen in July. They brought Jax’s dialysis machine, all of his medical supplies and medications, and were able to camp in the Smoky Mountains and visit their family farm in Tennessee. “We were so glad we decided to do it. Life goes by too fast. We knew we needed to take trips, make memories and enjoy life, even though it kept trying to knock us down,” Kate said.
The next several months were filled with more hospitalizations, unstable labs, hypertension, and potential donors getting “worked up” but not working out. Kate decided to get tested, knowing she had to try to see if she could save Jaxson and give him a second chance at life. On October 27, she announced that Jaxson would receive HER kidney. The team and family planned a transplant date in late November, but Jaxson tested positive for parainfluenza virus, which changed everything. He had to be symptom free for 14 days from the time of his swab to be clear for surgery because it was important that he have the strongest immune system possible.
December 5th would mark 14 days symptom free. At that time, he could be placed back on the transplant list, where one of two things would happen. He would either get a great kidney off that list OR he could get Kate’s kidney sometime in January. On December 6th, Jax had a series of labs drawn to make sure all of his numbers were stable for transplant. All of his labs were great, and his medical team began to accept kidney offers off the deceased donor list. On Wednesday, January 11, 2023 Jaxson and Kate completed the last set of labs to clear them for transplant. Not wanting to put it off any longer, Kate decided officially that she would be Jax’s donor.
On Wednesday 1/18, Jaxson was admitted to Cardinal Glennon. He underwent a small procedure to have a catheter placed in his neck so that he could have plasmapheresis which removes his blood plasma. This would help prevent the return of FSGS (focal segmental glomerulosclerosis which caused the kidney disease (according to his biopsy). On Thursday, 1/19, Kate was admitted to SSM Health St. Louis University Hospital to undergo a nephrectomy of her left kidney. “Kate had a hard time not being with Jax. She’d been Jaxson’s primary everything through this whole ordeal with me being gone for work. But we all knew that this was all necessary for Jax to get the ultimate gift of life,” Ryan said. Not long after the medical team started on Kate’s surgery, Jaxson was taken into surgery at SSM Health Cardinal Glennon. His surgery was expected to last 6 hours. Kate would need to stay in the hospital for a few days and Jaxson would recover in the Pediatric Intensive Care Unit (PICU) for a few days and then transition to the TCU for the remainder of his stay (10-14 days). “Sitting there waiting for both my wife and son to come out of surgery and being at two different hospitals was a feeling I hope I have to never experience again. My trust was in the surgeons and physicians and I was super impressed with all the staff. It’s not often they text you from their personal phones, give great hugs and reassure you that everything is going to be just fine,” said Ryan. “Kate’s surgery went great. I was notified when her kidney was out and when it was on its way from SLU to Glennon. I was kept in the loop from Jax’s first incision, to when Kate’s kidney was in the surgeon’s hands, to when the kidney was being sewn in, to when the kidney had blood flow, to the ureter being sewn to the bladder, to taking his PD catheter out and closing Jax up and moving him to the PICU. The constant communication made the experience a little less stressful and I can’t say enough good things about SSM Health Cardinal Glennon,” Ryan said.
Determined to get to Glennon and be with Jax, Kate was discharged from SLUH on 1/20. Jaxson grew stronger each day, working with physical therapy and occupational therapy. He was getting more energy each day and his positive mindset and determination were impressive. After about a week, Kate made the difficult decision to go home from the hospital for an afternoon to surprise her other boys and have some much-needed time with them. Leaving Jaxson and Ryan behind, her emotions were at an all-time high. “When I arrived to our subdivision, I think over half of our subdivision had their lights switched over to green. Some had Jaxson Strong signs and the amount of support our community has shown us is mind-blowing,” Kate said. “It felt amazing to see my boys and actually sleep in a regular bed for a bit. But I needed to leave my home and half my heart behind to head back to the hospital to be with Jaxson and Ryan,” said Kate.
After 16 days in the hospital, the family’s Wentzville neighborhood held a parade to welcome them home. On February 2, the whole neighborhood went green for Jaxson and his family. “Life after receiving a kidney is a blessing, but it also comes with its own set of challenges. Jax takes pills for a number of things. He has 13 medications in all and a total of 48 pills per day divided morning, mid-day and night. Labs and doctor appointments are pretty regular for the first few months to make sure lab values are where they need to be and that everything is going well. Jax’s energy level and appetite has improved so much already. I can’t believe how much he is eating and the different things he’s asking for that he’s never asked for before. He is smiling more than ever and so happy to be with his brothers and pets again. Life is getting back to normal and everyone is much happier,” said Kate.
On February 13, Jaxson celebrated his 11th birthday. “I can’t say it enough with how proud we are of Jaxson,” states Dad, Ryan. “He’s been so strong and brave through all of this. At 11 years old, he’s been through more blood draws, surgeries, ultrasounds, CT scans and more of an emotional roller coaster than most people will ever have to deal with in their entire life. We are looking forward to a bright future, way more laughs, a ton more memories, and for Jax to just be a kid again.”
“I’d love to share for those who may be faced with the question of donating their kidney that it is so very worth it. I was out of the hospital within 24 hours of donating, and as long as you can prepare to take it easy for a few weeks, the recovery isn’t bad at all. It is the most amazing feeling to be able to give someone else a second chance at life,” says Kate. “We are so grateful for SSM Cardinal Glennon. Without the amazing medical teams that care for our son, I don’t know where we would be. We have been touched by so many along the way with their kindness, generosity and thoughtfulness. We are so thankful for everyone who has played a part in Jaxson’s Journey. Having so many people behind Jaxson and our family has made this journey a little bit easier to face. We know this journey is far from over but would like to think that some of our darkest days are now behind us.”