‘Sea turtle’ Emery about to rediscover a world outside the hospital
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.
Emery spent more than 500 days at Children’s Mercy, coming here when she was only six weeks old. 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. But Emery has prevailed, and on April 26 she went home to El Dorado, Kansas near Wichita, about 2½ hours from Kansas City.
Emery’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. Autumn draws the comparison of Emery’s journey with a sea turtle’s determination to survive.
“Ever since Emery was born, I kept seeing sea turtles everywhere we went,” Autumn said. “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.
“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.”
“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. It was one of the ways that helped me cope with the situation and share Emery’s story in a small way.”
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. Emery lost her appetite and became extremely lethargic. Finally, Autumn brought Emery to Kansas City for a dermatology appointment at CM Broadway, and immediately the seriousness of Emery’s condition was recognized. She was admitted at the Adele Hall Campus, where she began her extended stay.
Tumors eventually affected Emery’s skin, muscles, bones and internal organs, including her stomach and intestines, which lead to intestinal blockages. She required IV nutrition because her ability to absorb nutrients from her digestive tract was so limited. 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).
But with perseverance, and a sea turtle hatchling’s determination, Emery recovered and headed home, pretty much as a regular, healthy toddler.
“It’s been a long, emotional journey,” Autumn said. “The reality of going home has just washed over me, and I’m overjoyed that its really happening.”
Autumn said the experience with the Children’s Mercy medical staff was “a blessing.”
“We communicated together, we brainstormed together, the medical staff and I worked as a team to get Emery where she needed to be.”
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.
“Emery is an awesome little girl,” said Joel Thompson, MD, Hematology/Medical Oncology. “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.”
Dr. 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.”
Megan Lynch, Pediatric Nurse Practitioner, Hematology/Oncology/BMT, said, “Both Emery and Autumn were a joy. I am so happy that I had the opportunity to take care of the sweetest, most charismatic baby! Autumn was so very involved and so intuitive about Emery’s needs. There were daily facetime sessions with Dylan (Emery’s dad) and many family members. What a group effort!
“I would often go see my sweet patient for a pick-me-up,” Megan added. Emery is such a happy little girl. I would go to say, ‘Hi,’ and she would clap her hands when she saw me. I knew that I could make it with her support!”
Autumn’s advice to other parents who face long-term care for their children is, “Keep your faith; communicate with your medical team; work together; be hands-on and fight for your child. Advocate for your child, and you’ll make it.”
Although Emery’s world has consisted of a hospital room for most of her life, Autumn said she expects the transition home to be smooth.
“She’s barely been outside; she probably won’t remember riding in a car; we have two cats she’s about to meet. But she’s very expressive and she loves everybody, so she’ll adjust just fine, I’m sure.”