Kenzley was diagnosed on 3/2/23, at 17 months old. She had underwent an annual MRI for her PTCH1 mutation and had no symptoms to indicate that anything was wrong. We were floored when our team came in and delivered the news. She immediately went in for tumor resection and developed posterior fossa syndrome. Luckily, it was a mild case but still took a few months to recover the majority of her motor skills. A week following tumor resection, she was rushed back to the OR to have a shunt placed. She developed hydrocephaly. Shortly into her first round of chemo, her port had failed. It was removed and replaced, so she has her battle scars proudly on display on both sides of her chest. She was devastated to be away from her baby brother and constantly cried for her bub. At the time of diagnosis he was only two months old, and Kenzley was (and still is) the best big sister. Throughout all 6 rounds of chemo, 3 of those BMT, she was such a trooper. Her final treatment cycle, she developed a central line infection. It was clearing up, and she was able to discharge and ring the bell. A few days later, her port pushed itself through the skin and lead to an emergency admission and surgery to remove it. She is nearly 6 months out of treatment and is still NED. She amazes us every single day with the strength and courage she displays. 

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