www.Ups tatePhys i c i ansSC . com | www.Hea l thL i nksUps tate. com | 57 “Another MRI showed Ava was progressing, so she was taken off the ONC201,” Rhoda said, adding that some of the other children at the trial showed marked progress but that Ava’s mutation was worse. Ava lived for a total of 17 months from the time of her diagnosis to her death in December 2021, five months longer than the maximum timeline predicted. While those 17 months were fraught with anxiety and sadness, there also was a great deal of joy. Rhoda admitted that “you can’t prepare yourself” for anything like losing a child, but the Woodard family certainly tried. They planned trips to places Ava would enjoy, such as LEGOLAND, Times Square and Myrtle Beach. They installed a swimming pool. They bought a golf cart. Ava’s birthday party was circus-themed, and she was honored by the town with a parade. But most of all, Rhoda said, Ava’s own remarkable bravery and positivity is what moved the entire family forward. “She was so faithful – we talked about it every day,” Rhoda said. “She talked a lot about heaven. She knew she was dying, and she wanted to go there.” Ava passed away at home on Dec. 17, surrounded lovingly by the entire Woodard family. Rhoda explained that she gave all the kids a choice on whether they wanted to be present – and they all did. Soon after Ava’s peaceful departure, Rhoda phoned Ava’s former kindergarten teacher, Alaina Fowler, and asked a special favor: Would she sing at Ava’s service? The two had had a special bond in the classroom years earlier, and Alaina’s beautiful singing was sure to uplift the hearts of everyone in attendance. “Ava is the first student I have ever lost, and it was harder for me than I could have imagined,” said Alaina. “She was different. She was spunky but had a sweet soul. She was more mature than the other kids. I taught her how to read and count, but she taught me so much more and opened my eyes in many different ways.” “I am so grateful I had the chance to be her teacher,” she added. “She’ll forever be in my heart.” As you read this, Rhoda is grateful for the support of her husband, children and grandchildren since Ava’s passing. She and Jeff are closer than ever, and she’s slowly finding herself doing the things she always loved: watching the kids play sports, cooking and staying busy. Eventually, she said, she wants to do her part in spreading awareness about DIPG, but, for now, she’s content “working on the family God gave her first.” “Life is different now,” she admitted. “We talk about her — we are all still learning how to live without her. I cry every day. … but I laugh a lot, too.”
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