By L. Parsons Tristan Black is a spunky, smart, easy to smile 11-year-old little boy who loves the outdoors, building blocks and being with his family. He is also in desperate need of a kidney donor. The Winslow boy’s mother, Sierra Kolomitz talked about Tristan’s situation. “He was born an energetic little boy who was so full of life and always up for adventure. When he was just 17 months old he began experiencing strange medical symptoms. Stroke like behavior, fatigue, vomiting, fever, weight loss and skin rashes were just some of the things he was dealing with.” According to Kolomitz, when Tristan first fell ill, doctors thought he had Bell’s palsy coupled with a relentless strain of the flu. It was even suspected he was experiencing a Wilms tumor, which is a type of childhood cancer that begins in the kidneys. Following days of testing and blood transfusions, he was admitted to Cardon Children’s Hospital (now Banner Children’s) in Mesa. Doctors there took Tristan into surgery for a biopsy and to place a port to begin chemotherapy. “Unfortunately, this was a misdiagnosis. We were notified that what they originally thought were tumors were actually blood clots. His blood pressure had gotten so high at some point that blood vessels in his kidneys had burst and he had been bleeding internally. Thankfully, this was caught in time. Medications were started to try to manage his pressures with little success and he ended up spending nearly 100 days of his second year of life in the hospital.” The challenges of having a sick child go without mentioning. However, as Kolomitz explained, “Not knowing what the actual problem was or how it would progress or what his life expectancy would be was so hard.” Kolomitz put herself through nursing school as a single mother in order to help advocate for her son as well as to learn everything she could about how to care for him. She is now a registered nurse with a bachelor’s degree in nursing that she completed just last week. Then, just after his fourth birthday, Tristan’s journey took a new turn. Kolomitz continued, “We have really come to believe that there is a rhyme and reason to things in our lives. Tristan had been seeing the same doctor for four years. He had never seen anything like this and did not have a diagnosis for Tristan. One day, we received a call that the doctor would no longer be able to practice. We were referred to a new doctor and on the first day, he was able to get Tristan in with a specialty team 2,492 miles from home in Boston. That team was conducting research on a new disease that Tristan’s scans and symptoms seemed to reflect.” In March of 2015, Tristan finally received a diagnosis of Mid Aortic Syndrome (MAS). Kolomitz said, “MAS is basically a malformation of the aorta. This disease can manifest itself anywhere in the body because it’s the blood vessels that are affected. Tristan’s syndrome is focused in his kidneys. He has a narrowing and an aneurysm of the aorta. For him, this is right about where the kidneys tie into his aorta.” The relief of having a diagnosis was palpable for Tristan and his family. Kolomitz continued, “When we went to Boston to see the specialist, there were like 200 cases of this syndrome in the world that were known. We spent so long not knowing what was going to happen or how it was going to progress that just the diagnosis in itself was a relief. They did a scan when he was a baby and couldn’t see all of his blood vessels in his entire body. But, they said, based on what they had seen it ‘could have been’ so many things. There were a lot of ‘could happen’ and ‘might happen’ conversations. So when we saw the team in Boston, they broke it down and they explained it and gave us some clarity on what was going on and what the treatment options were going to be.” Following the diagnosis, doctors discovered one of Tristan’s kidneys was severely underdeveloped and could be contributing to his blood pressure issues. “The kidney was removed with no impact on his pressures. So, he continued on his trend of being hospitalized every year or so due to complications from his kidney disease and blood pressure issues for four more years. On New Year’s Eve 2019, he was hospitalized for acute chronic kidney failure. His specialist was not sure he would recover and dialysis was discussed seriously at this point, but he recovered enough to go home. In March of that year, it was determined that Tristan’s remaining kidney needed to be removed before it caused irreversible damage.” Tristan’s kidney was removed in April this year and he began peritoneal dialysis. “The timing of this was terrifying,” said Kolomitz. “It was around the same time as the first wave of the COVID-19 pandemic.” Kolomitz had another life changing event happen last spring. She reconnected with and married her high school sweetheart, Bobby. They are currently in the process of making Tristan’s adoption official so that Bobby has more decision-making power when it comes to his medical care. Kolomitz is also grateful for Bobby’s help saying, “We can only have one parent in with Tristan at a time because of COVID. Bobby has been a godsend because it’s always been me that is there and he stepped right in by letting me take breaks, get homework done and honestly, just rest sometimes.” Medically, Tristan was doing well, Kolomitz said, “But mentally, he has been struggling. He is a social creature and the isolation of COVID and dialysis has been a lot on him.” Tristan has faced challenges in getting onto the transplant list for a new kidney. Last year, he was scheduled to meet with a transplant team to be evaluated and be placed on the list. “Unfortunately his body had other plans. The night before, he had a sudden blood pressure spike forcing fluid into his brain. That led to many complications including seizures and loss of vision and verbal ability. It took nearly a month of rehabilitation and evaluation to eventually be released in November.” Tristan’s dialysis continues at home as he has finally been placed on the transplant list. The family has begun a campaign with the Children’s Organ Transplant Organization (COTA) to help raise money to help cover costs associated with Tristan’s medical care. Currently, More Than a Corner Thrift Store, located at 401 E. Third St. in Winslow is contributing a portion of their profits to the COTA campaign. They also are in contact with a transplant coordinator who is working to find a kidney donor for Tristan. Kolomitz said, “Anyone can call her and tell her that they want to see if they are a match for Tristan. If someone wants to be a match, there is a medical questionnaire that cancels anyone out that wouldn’t be a good donor medically. Once they are cleared, they move on to the next process which is a lab draw where they type and cross Tristan’s blood type. If they are a match there, there are more tests to make sure the kidney itself is structurally sound. Then they do a psychological evaluation. You have to be mentally okay to deal with the fact that the kidney you donate may not take for whatever reason.” The ideal donor age is between 18 and 60. The more living donors that are tested, the higher the chances of finding a really good match for Tristan. Being on the transplant list is promising, yet there is still a long road ahead for Tristan and his family. Kolomitz said, “There are procedures being developed for correcting different aortic issues that are organic to the child so they grow with them. Right now, we are waiting to see if Tristan is a good candidate for these new procedures after his transplant so that the MAS doesn’t begin the process all over again.” However, she said, “Once he does get a kidney, it is likely he will be able to go back to school in person. There have been studies of kids who are on immunosuppressant drugs are doing better with COVID. That will help him with his mental health, just being able to interact with other kids and get out of the house. We are all tired of being cooped up, and he is getting real tired of being isolated. We have to take so many more precautions because we can’t risk anyone in our household picking up the virus and getting a call from the transplant team and not being able to take the opportunity.” Tristan is nervous about having another surgery, his mom explained. “We are trying to focus on the positives like not having such a restrictive diet, not being on a dialysis machine for 12 hours a day and not have to be so careful.” The family is very optimistic and sure that Tristan is in the best medical hands possible. Kolomitz continues to do everything she can to keep spirits high and advocate for her son. “People ask me all the time how I do it,” she said, “and the answer is, I just do. There is never a question, there is never a hesitation, I just do.” To help with Tristan’s medical costs, visit www.cota.org/campaigns/cotaforstristanstrong. To contact the transplant coordinator to be tested to donate a kidney, call Lorrie at St. Joseph’s Hospital at (602) 406-6199.
