By Maureen Gilmer, Riley Children’s Health senior writer, firstname.lastname@example.org
Aa Fi Yah brings sunshine and giggles to 9 West at Riley Hospital for Children.
She also brings candy, lots of candy.
The 5-year-old from Fort Wayne is known for carrying a bag of candy up and down the unit and handing it out to everyone she sees.
Aa Fi’s positive energy is what draws people to her room. When she sees someone in the doorway, she says “Come in, my friend.”
That sparkle has endeared her to her care team as she recovers from surgery to remove a large tumor – craniopharyngioma – from her brain.
While the tumor that attacks the central nervous system is virtually benign, neurosurgeon Dr. Rabia Qaiser said it is a lifelong diagnosis because it can grow back.
When Aa Fi was first transferred to Riley from a Fort Wayne hospital in November, she couldn’t move one side of her body, and she spoke very little.
“We thought she didn’t know English, and then after Dr. Qaiser did her surgery, we learned that she loves to talk,” said child life specialist Maddie Rodriguez. “She never stops talking.”
Aa Fi switches between English and Burmese easily. Her mom said she learned a lot of English from watching movies and being in the hospital.
She holds court in her room with her mom, Dr. Qaiser (whom she calls Grandma Qaiser), Dr. Chiara Flores, nurse Anna Lubbers, Rodriguez and others while she shows off her painted nails and her henna tattoos.
She delights others with her dance parties, duck lip poses, TikTok videos, winks and car rides around the unit. She is known to whip up imaginary smoothies and coffee in her pretend kitchen and hand them out to team members.
And she likes to give surprise bubble parties to other patients to make them feel better.
Aa Fi’s mom, Chochowin, said through a translator that she and her husband brought their daughter to the hospital in Fort Wayne after she had a sustained fever and was vomiting. She was moved to Riley when doctors detected fluid in her brain.
She has been in and out of Riley several times but returned earlier this month for follow-up care related to the major tumor resection surgery in late December.
“Clinically, she is doing amazing,” said Dr. Flores. “We love having her here. When she comes, everybody gets so excited.”
For Aa Fi, coming back to Riley isn’t such a bad thing, she tells her mom.
“I go to hospital and see my friends,” she said.
“She is very happy here, Chochowin said. “She is friendly with the staff. Even when we go back home, she is asking about the doctors here. She says she loves them.”
Aa Fi is the fourth of five children in her family. At home, she likes to play with her siblings and go shopping, her mom said.
“She is always happy. Every day she smiles.”
Aa Fi likes to look her best always, so even before surgery, she puts on lipstick, glitter and makeup, Dr. Qaiser said.
“She is an amazing child. She has a really positive attitude, and she and her mom are among the most generous patients and parents I’ve ever seen. Every day they want to give to everyone around them.”
That positive spirit rubs off on others around her, Rodriguez said, describing Aa Fi as a social butterfly.
“Another mom heard her giggling in the hallway and said, ‘That is the most contagious laugh.’ She has that effect,” Rodriguez said, “making you smile when there are really hard things going on. I think her spirit and her light are very rare.”
Aa Fi’s mom said she is grateful for the kindness and care her daughter has received during this difficult time.
“Thank you so much to everyone.”
Photos by Mike Dickbernd, IU Health visual journalist, email@example.com