Honored Kid

Wyatt Jones

Wyatt Jones Kid Photo

Location

Oakdale , CA, US

Diagnosis

Acute myeloid leukemia (AML)

Date of Diagnosis

February 2024

Status

Forever 18 Warrior Angel

Treated At

Sutter Medical Center

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My Story

On January 24, 2024, Wyatt found a lump on the back of the right side of his neck. We went to the doctor's office, and they ordered a scan for February 1, 2024. On January 30th, Wyatt started complaining about a pain in his left shoulder and upper chest and he had been coughing up blood for almost a week and hadn't told anyone. We took him to our local emergency room. We had realized that he was also developing a slight "rash" that day. After running some tests, they diagnosed him with Pneumonia, and nothing suggested any other issues. They determined that his shoulder and chest were probably sore from all of the coughing. They prescribed him antibiotics and we thought that was the end of it. He had his scan on February 1st and had him in for a follow up appointment for his ER visit on February 3rd. We discussed the "rash" that was still there, but he wasn't itching and there were no welts, so we were not concerned. They said to bring him back in a week after he was off the antibiotics to see if the pneumonia was gone. Meanwhile Madera Children's hospital had reached out to us concerning his scan on the lump. They decided that it wasn't a priority and put his appointment out to July. We walked into the second follow up appointment for Wyatt on February 10th. We had no idea our whole world was about to be shattered. Wyatt was turning purple in his ears, the "rash" was starting to spread over his entire body and up his neck. We were advised to take him to an ER at one of the Modesto Hospitals, because our hospital wouldn't be able to do anything. We arrived at the ER around 11:30am and they had him in the back by 1pm after running some blood work on him. They monitored his breathing for a couple hours and decided he needed to stay on oxygen. They ran many more blood tests, still trying to figure out what was causing everything. We were told that he had low oxygen levels and low blood counts, but that was about all that they could tell us. Around 4 pm the ER doctor talked to the Pediatrician for the hospital and was told that Wyatt needed to be sent to a Children's Center where he would receive the needed care. The doctor suggested that we come to Sutter Children's Center in Sacramento, and we completely agreed with them. Wyatt and his mom arrived at Sutter Sacramento Children's Center by 8:30pm on February 10th and his aunt was there not long after that. At that time, we had no idea we'd be "living" in Sacramento for the next 8 months. While talking to the pediatric physician on duty, Wyatt discovered that he had at least one more lump on his neck. They ordered some scans on him and then we were allowed to eat and rest for the night. On February 11th the attending physician came in and introduced himself as a Pediatric Oncologist and that's when, as one of our favorite nurses said, we got hit by the bus. He said that Wyatt's body was full of lymph nodes and that the "rash" was common withLeukemia due to his low platelet level, low oxygen levels, and low blood counts. They set up his Bone marrow test for February 12th and a Lumbar Puncture that day. He also started his 1st dose of Chemotherapy into his spine. Wyatt was diagnosed with Acute Myeloid Leukemia. On February 14th they started his 1st round of IV Chemotherapy. The doctors kept saying that he had something else besides the pneumonia because nothing seemed to help clear it up completely. He'd get a little better then worse again, we spent our first visit in PICU. It took a couple weeks of blood work, but they finally found the culprit doing all the damage to Wyatt's lungs, he had a Mucor fungal infection. If you've never heard of Mucor there's a reason for that, 1.7 out of one million people contract Mucor. He was moved to the PICU for a 2nd time in the early hours of March 5th, and they scheduled a procedure that day to put a chest tube in to drain the extra fluids off of his right lung. On March 6th, our already fragile world came crashing down. Early that morning Wyatt’s oxygen levels dropped to dangerous levels, and he had to be intubated. Once that was done, Wyatt's body went into shock and everything they were doing to help him was not working. One of the doctor's came and sat with mom and aunt and let us know they had one option. They could place him on an ECMO bypass to allow his body to heal. We had a choice: place him on the machines with a 50% chance he'd come off of them or continue like we were and ultimately lose him right there. Wyatt was placed on the ECMO, Dialysis, and ventilator machines by 5pm. His body took to it well. Wyatt remained on the ECMO and Dialysis machines for a total of 9 days. The doctors and nurses were expecting it to be at least 30 days, but through the grace of God he came off early. On March 15th he was only left on the ventilator and even then, his breathing was really strong. During the Bronchial Biopsy on March 22nd, they discovered that the Mucor fungus was hiding in the lower right lobe of his lung and spreading from there. He remained on the ventilator until March 25th and then got a small break. Finally knowing it was Mucor in the lung, they were able to schedule a lobectomy on March 29th. To Wyatt's dismay, that meant he was back on the ventilator again. They removed roughly half of his right lung. His lung healed and he was taken off the ventilator again on April 5th. He was moved back to the Pediatric Oncology side of the floor on April 12th. After 79 days straight in the hospital he got his first break, on April 29th and it was a long one that had many doctor visits and transfusions in between. We returned to the hospital for a bone marrow test, lumbar puncture, and his second round of chemotherapy on May 28th and were there until June 19th. On June 24th we were back for a bone marrow test and lumbar puncture. His third round of chemotherapy ran from June 27th to July 22nd. We returned on July 29th for a bone marrow test, lumbar puncture, and his fourth round of chemotherapy and were there until September 2nd. On September 16, we went back for the bone marrow test, lumbar puncture and he started his 5th and final round of Chemo. We were released to actually go home to Oakdale, finally, on Oct 30. He spent Halloween with his cousins and friends. We had a small but beautiful thanksgiving as a family. And then our world went upside down again. Wyatt started losing vision in his right eye, ended up losing it completely the day we were admitted back into the hospital on December 5, 2024. We were hit by the bus again when they said it was leukemia. He did 12 rounds of radiation for that right eye. In the meantime, he was preparing for a bone marrow transplant and had another round of chemo. After radiation was completed, he found some changes started in the left eye’s vision, so they started radiation with it. He was supposed to do 12 rounds for that. During this time, he turned 18. As he liked to tell us, he made it to boss level adult. He made the best of a birthday and Christmas in the Hospital. On Sunday, January 5, 2025, Wyatt had a massive headache that wouldn’t quit. They tried pain meds of all kinds; they ran every test they could, but they didn’t show any issues. His nurse watched him closely for any sign of anything that could explain what was happening. About 4:30 that day, Wyatt had what appeared to be a stroke. From there they went back to running tests and trying to determine what happened and how to help him. What no one knew at that time was there was swelling that caused a lot of pressure and in the end the pressure was too much. It never showed up on the scans, it was like a switch was flipped and it happened fast. The general consensus is this was complications due to the radiation. We want everyone to understand this was no one’s fault, every treatment for cancer comes with huge risks and there is no way to know how they will affect each person. We, as a family, want to acknowledge the outstanding care he received through all of this. The medical staff at Sutter Sacramento Pediatrics are phenomenal. Wyatt’s heart stopped beating at 11:26am on Monday, January 6, 2025. He passed surrounded by people who loved him. It was a truly peaceful and beautiful moment. Wyatt loved history and studied wars. He often compared life’s challenges to warfare. We had a lot of opportunities to talk about his experience on ECMO, how he got there and what it was like. After one of our talks, he said that the fungal infection was like an enemy assassin that infiltrated his defenses and almost took him out. As I look back at his last moments, all I can think is it was a sniper that took him out. We didn’t see it coming and we were not prepared for this. We know Wyatt would approve of that synopsis. Even though it was tough, we were blessed. We had 18 perfect years with our Wyatt. He was an incredible artist, was becoming a solid musician, and he was an all- around incredible human. After he graduated, he wanted to be a goat farmer like his Papa and design games as a hobby. He loved art, music, his family, and was a child of God. I can safely say that all who knew him were impacted in the best ways possible. That is a true legacy. - Written by his Aunt Sammie and my amazing sister who stood by me through the entire battle (Samantha Jones of Oakdale, Ca)

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