Ezra Pruett

May 20th, 2024 was the day that changed our lives.

We had just moved to Salina and were headed to meet our new PCP. Just as every doctor’s visit goes, I thought it was going to be normal. But when it came to Ezra’s examination, the doctor questioned something he felt while doing his exam. After another colleague came in and could not determine what it was, we decided our best route was to go for blood work.

Within 20 minutes, we were getting a phone call to rush Ezra to the emergency room because they thought he had internal bleeding because his hemoglobin was so low.

Salina Regional did what X-rays they could without having to sedate Ezra. The first doctor came in and said it was cancer. The second doctor came in and also said it was cancer. They didn’t know what kind, but we would either be going to Wichita or Children’s Mercy.

Children’s Mercy is where we ended up going, and they transported us by EMT. After arriving at Children’s Mercy and being admitted to 4 Henson, two days later we found out that Ezra had hepatoblastoma.

From there, we started cisplatin and the “red devil.” After the doctors at Children’s Mercy completed MRIs and CT scans of Ezra’s abdomen area, we found out that he had a 16-inch tumor on his liver and multiple spots on his lungs.

After six rounds of chemo, we had our liver resection to remove the 16-inch tumor. In the process, they also removed his gallbladder. A few months later, after several more rounds of chemo, we did his lung resection. They worked on the left side of his lung first, let him recover for a day, and then went in for the right, removing 22 tumors from his lungs.

When the pathology report came back from removing those tumors, we found out that he also had hepatocellular neoplasm NOS, which made him terminal.

From there, we decided to reach out for second opinions, and we found Cincinnati Children’s, where we went for two months to try a clinical trial. But Ezra only ended up receiving one round

of chemo because his labs and urine output meant he did not qualify for the clinical trial anymore.

We were just sitting ducks at the Ronald McDonald House, so we decided to transfer care back to Children’s Mercy.

After multiple rounds of chemo, another lung resection, and continuous prayers, Ezra has been put on hospice, and we are just trying to make memories.

We are trying an autoimmune therapy to try to slow the growth of the tumors because of their rapid growth and to give us just a little bit more time with him.

So right now, our main focus is working on our bucket list and making the best memories with Ezra.

As of  April 3rd, 2026, his kidneys are having some issues keeping up with the autoimmune therapy, so we will be keeping a close eye on that. His AFP also went from 8,600 to 9,300 in three weeks. The doctors are going to look at other patients to see what their response was, and if Ezra is not in the bracket, we will talk about our next step.

Which will probably end up being ending treatment altogether and just enjoying everything that we have right now, because the tumors are progressing pretty quickly, unfortunately, and the amount of time is just so unknown.

💛