Megan Lynch, Pediatric Nurse Practitioner, Hematology/Oncology/BMT, said, “Both Emery and Autumn were a joy. Thompson added, “Autumn was also amazing. There were so many dips, dives, twists, and turns in Emery’s road to recovery, and Autumn was stalwart through it all. Some of those were expected, and some were very unexpected. But whatever it was, she would take a deep breath and ask what we needed to do to make Emery better. Autumn was a strong but respectful advocate for Emery’s needs and was a great partner as we navigated Emery’s unique medical course. When we had a tough decision to make (such as whether to pursue surgery at a particular time), we could present the options, the risks and benefits, and our recommendation, and then we could trust Autumn to take it all in, consult with her family and support system, and make the best decision for Emery. We are lucky to take care of Emery and to partner with Autumn in her care.” “I think Autumn’s choice of a sea turtle as her ‘mascot’ is so apropos. Whatever obstacles this disease (or the treatments she required) threw at her, she just kept plodding along at her own pace and with impressive perseverance and resilience. All the nurses, therapists and physicians on 4 Henson-Hall grew to love this sweet girl in a special way, and not only did we take care of her, but she found ways to lift us up. I remember one nurse practitioner telling me that when she was having a bad day, she would just go visit Emery, see her bright smiling face, and find the positive energy to face the rest of her shift.”ĭr. “Emery is an awesome little girl,” said Joel Thompson, MD, Hematology/Medical Oncology. Members of Emery’s medical team said Emery lifted their spirits as they worked with Autumn to determine the best course for Emery’s treatment. “We communicated together, we brainstormed together, the medical staff and I worked as a team to get Emery where she needed to be.” “The reality of going home has just washed over me, and I’m overjoyed that its really happening.”Īutumn said the experience with the Children’s Mercy medical staff was “a blessing.” “It’s been a long, emotional journey,” Autumn said. At one point she required an ostomy (a surgically created opening in the abdomen that allows waste to leave the body through the skin of the abdomen) and a mucus fistula (another surgically created opening into the intestines through which she was able to receive additional nutrition).īut with perseverance, and a sea turtle hatchling’s determination, Emery recovered and headed home, pretty much as a regular, healthy toddler. She required IV nutrition because her ability to absorb nutrients from her digestive tract was so limited. Tumors eventually affected Emery’s skin, muscles, bones and internal organs, including her stomach and intestines, which lead to intestinal blockages. She was admitted at the Adele Hall Campus, where she began her extended stay. Finally, Autumn brought Emery to Kansas City for a dermatology appointment at CM Broadway, and immediately the seriousness of Emery’s condition was recognized. Emery lost her appetite and became extremely lethargic. When Emery was born, Autumn noticed just one tiny hard spot on her skin as more tumors appeared, Autumn became concerned, but repeated examinations produced no diagnosis. It was one of the ways that helped me cope with the situation and share Emery’s story in a small way.” “I just knew her experience was like a little sea turtle’s, so I wrote and illustrated a book about a sea turtle hatchling and all of its struggles getting to the ocean. “Her recovery was slow we did it at her pace,” added Autumn, who found the similarities between Emery and sea turtles so compelling that she authored a book titled “The Little Leatherback.” “We even moved into a hospital room with a sea turtle on the wall…from then on, I knew this was her journey she WAS the sea turtle. “Ever since Emery was born, I kept seeing sea turtles everywhere we went,” Autumn said. Autumn draws the comparison of Emery’s journey with a sea turtle’s determination to survive. But Emery has prevailed, and on April 26 she went home to El Dorado, Kansas near Wichita, about 2½ hours from Kansas City.Įmery’s mother, Autumn Gurley-Price, was with Emery every step of the way, staying at the Ronald McDonald House and rarely leaving Emery’s bedside. Her battle with Infantile Myofibromatosis, a rare disorder characterized by the growth of tumors affecting the skin, bone, muscle, soft tissue and internal organs, has involved chemotherapy, multiple surgeries and near-death experiences. Like a sea turtle hatchling struggles to overcome driftwood, footprints, predators and other obstacles to reach the ocean, 18-month-old Emery Gurley has bravely made a difficult journey home.Įmery spent more than 500 days at Children’s Mercy, coming here when she was only six weeks old.
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