In 2023, Mackynzie was sent to the hospital after experiencing ongoing abdominal

pain, weight loss, nausea, and vomiting. Following multiple doctor visits, where her

symptoms were attributed to anxiety, a stomach bug, or a virus, blood work was

finally completed. The results revealed severely elevated amylase and lipase levels.

For reference, normal levels for her age should have been 21-101 for amylase and

8-57 for lipase. Mackynzie’s amylase was over 200, and her lipase was 386. We were

immediately instructed to take her to the hospital for repeat testing to confirm

pancreatitis.

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Upon arrival at CHRISTUS Santa Rosa Children’s Hospital, her labs were redrawn,

imaging was completed, and it was confirmed that she was experiencing an active

pancreatic flare. Her levels had risen even higher, and her pancreas was so inflamed

that it wasn’t visible on imaging. As a parent, this was one of the hardest experiences

to endure - there is no cure for pancreatitis, only supportive care involving clear fluids and allowing the pancreas to

rest and flush. After several days of IV fluids, pain, tears, and hunger, her levels began to normalize. She was gradually allowed broths, then other liquids, and eventually progressed to solid foods. Throughout her stay the staff and providers made Kynzie feel comfortable and never like a burden. While compassion is expected of medical staff, many children in her situation often face frustration from nurses when resisting medications, struggling with IV placement due to dehydration, or experiencing hunger. Kynzie, however, was consistently treated with patience and care. She was discharged on Thanksgiving Day, allowing us to spend the holiday together with the understanding that this condition could return.

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Thankfully, her body remained strong for nearly a full year. However, in November 2024, the flare returned - same symptoms, same weight loss, same pain, and another hospital admission. She was hospitalized for almost a week under the same treatment plan. As parents, there is nothing harder than watching your child suffer and being unable to take the pain away.

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Once discharged, we became very familiar with the warning signs: abdominal pain, weight loss, nausea, and vomiting. Managing these symptoms required strict diet, excessive water intake, and daily medications. Some flare-ups were managed at home with extremely difficult days and nights, many tears, and forced liquid intake in an effort to avoid hospitalization. While we were able to manage some episodes, by early 2025 it was no longer sufficient. 

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Hospital stays became the new normal. Overnight bags were always ready. The hospital entrance became familiar. Walking into the ER felt routine, repeating the same information each time - that she has pancreatitis and was experiencing an active flare. Nurses would comment on her pale skin and sadness, and we were immediately taken back. After being hospitalized every two weeks, her doctors decided it was time to place a pancreatic stent. 

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Kynzie, being the strong child she is, handled the procedure bravely despite the discomfort of IV placement and the procedure itself. Initially, the stent was successful. Her pancreas had developed stones that were causing significant pain, and the stent gave us hope for a healing process. The plan was to replace the stent every 4-6 weeks for six months to a year, depending on how her body responded.

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Unfortunately, by week three, the stent failed and required early replacement. While she was able to return home the same day due to stable lab levels, complications continued. By April, the stents were being replaced every two weeks due to clogging, infection at the site, and ongoing pain. Ultimately, the decision was made to remove the stent entirely and monitor her response.

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By God’s grace, Kynzie has been doing very well since the stent removal. She has gained weight and recently surpassed 100 pounds - a major milestone for her. She remains on a limited diet and must take Creon with every meal. At this time, Creon is expected to be a lifelong medication. There is still no known cause for her pancreatitis or why she developed this condition.

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The CHOSA team and Dr. Monagas were truly amazing throughout this journey. They consistently showed compassion, gave us their full attention at every visit, and explained everything in a way that was easy to understand. Most importantly, they made Mackynzie feel valued, safe, and cared for. She was heartbroken when we learned that BCBS and CHOSA could not come to an agreement and that she may need to transition to a different pediatric gastroenterologist. 

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Fortunately, an agreement was reached, and we were able to continue care with CHOSA. The fact that a child wanted to remain with a specific doctor and medical team is, in my eyes, incredibly significant. While many children face serious medical conditions, pancreatitis is not commonly discussed or understood until it happens to you or a loved one.

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CHOSA has become our “home away from home” - a place where we know Mackynzie will always receive the proper care she needs. I cannot speak highly enough of this hospital or the team that has cared for her. Just two weeks ago, we experienced a relapse, but we were able to manage her symptoms and stabilize her levels without hospital admission. Still, if hospitalization had been necessary, I knew exactly where we would go: CHOSA.

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CHOSA is more than a hospital - it is a community, a supportive environment, and for some children, a true home away from home.