CHARLOTTE, NC (WBTV) - This is a picture of Lilyanna Johnson blowing kisses with a NG tube and pic line. A fresh bath and real clothes for the first time in months.
“She’s doing great!” her mom Kristy said. “We just want to get out of the hospital.”
Lilyanna has been living on Levine Children's 11th floor for weeks. The storm last week into the weekend was enough to make her mom go crazy.
“We just want to get back to Kings Mountain,” Kristy Johnson said. “It’s like the cabin fever everyone else experiences, times a thousand.”
Kristy and I talked on Monday... then... Tuesday... Surprise! They got discharged.
Happy to report they're no longer in the hospital, but are staying at the Ronald McDonald House Charities (RMHC) on Morehead Street nearby. Still not home, but better.
Lilyanna is an itty-bitty little thing taking strong poisons to kill her cancer. Since our most recent update on her in March, she’s received 19 rounds of proton radiation, 5 rounds of busulfan chemo, several oral medications AND a bone marrow transplant.
She’s two years old.
Her mom Kristy is proud, proud, proud.
“Even on her worst days, she’s still sweet and loving,” Kristy said. “We pray this works and will soon be finished with cancer for good.”
Doctors say Lily’s most recent treatment – the bone marrow transplant – could be her last. They really think this could be what helps her heal.
For those who have followed Lily’s story since the beginning (we became one of our awesome #MollysKids in April of 2017), Lily has battled myeloid sarcoma TWICE. The first time around, she was 16 months old. A year later she was declared cancer-free, but this past February relapsed with cancer found behind her right eye.
Just last month her mom wrote in a desperate moment when they were moved to ICU. Soon after was when they realized Lily would need a bone marrow transplant.
Mom Kristy went through the surgery with her daughter.
“I was cleared from my doctor and knew I’d be the one to help my girl,” she said. “I am beyond stressed from going through this with her, so much I'm losing my hair. But as long as we’re going in the right direction, it doesn't matter.”
Kristy says her bone marrow transplant is working like a champ.
“It’s a long road ahead, but we will get through this,” she said.
Just last week Lily got her PICC line removed. She got off tube feeds and cut back on some medications.
“She’s eating like a piglet and her physical therapy is making her stronger,” Kristy said. “Now if Florence will just make sure to stay away, we’ll head home.”
And again, now they are one step closer.
We’re on Day 19. Hopefully you guys know by now how real pediatric cancer is, happening to kids we know and love.
**Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.**