HOLLY POND, Ala. – “She came out of the womb smiling,” Kelly Handley said of her daughter Lillie. “She has always been very loving, and she smiles through everything and has since the day she was born. She has been so strong and brave through everything she has endured, and she has endured a lot in the past five years – more than most adults would see in a lifetime. She has handled it with grace.”
Lillie was diagnosed in May 2016 with Neuroblastoma. Her mother explained, “We found out about it after an ER visit due to dehydration from a stomach bug that her, my husband (Jonathan) and other two kids had gotten.” The doctors asked to do an X-ray to rule out appendicitis. When that checked out fine and Lillie was given some medication and sent home.
The following day, the Handley’s received a call from Lillie’s pediatrician. “They told me there was a spot above her right kidney that the radiologist had seen and that we needed to have it checked out. We went for an ultrasound and then it just kind of went from there.”
Over the past five years, Lillie has endured countless amounts of chemotherapy, been in remission three times, received a bone marrow transplant in 2016, radiation, ports placed, several surgeries and numerous other procedures. Kelly recalled the first time Lillie went into remission, “Lillie stayed in remission for almost a year. We thought the outcome was really good and then she had that first relapse.”
The Handley’s learned last November that the disease had progressed. Kelly said, “The biggest thing for Jon and I through all of this is we want a good quality of life for Lillie. We don’t want her in and out of the hospital. We don’t want her sick. We want her to have that good quality of life.”
She continued, “Last week, we were actually in Charlotte, North Carolina. We were going to go and have more radiation done on Lillie’s lower back and her arms. Last Tuesday, Lillie had a seizure at the hotel. She had never had one.” The seizure was caused by a brain bleed.
Four weeks prior, Lillie’s scans had shown that her organs were fine, although the cancer was still in her marrow. “That shows how fast that stuff can grow and spread even on the chemotherapy drugs. We were told last Tuesday after the CT and MRI that there were two new lesions on her brain and some going down her spinal column,” Kelly said.
The family was told that unfortunately, nothing more could be done for Lillie that would not cause more harm. Kelly said they were told, “They said that there wasn’t really anything else we could do and to expect to fulfill our wishes for Lillie as far as the good quality of life that we have always strived to have.”
The family came back home to Holly Pond and Lillie is now in hospice care and the family continues to pray for more good days.
Lillie’s personality and attitude have helped her and her family through many of the toughest times. Kelly describes her daughter, “She is just full of spunk and a little sassiness in there too. I always said when we were inpatient for hospital stays getting chemo and stuff that I think her sass is what gets us through. She tells you what she wants and what she doesn’t want and to me, in a sense, that has made life a little easier.”
She added, “It has always been in the sweetest, cutest way possible. I don’t think there is a mean bone in her body.”
Several years ago, Lillie was able to visit Walt Disney World after her wish was granted by Make-A-Wish Foundation. She fell in love with all things Disney and especially all things Disney princess. The family began having princess parties four years ago. “Lillie said she would like to have a princess party. It’s not related to a birthday or anything like that. It’s just a special day where everybody comes out and loves on Lillie.”
The first party was at Lillie’s grandmother’s work at Cullman Internal Medicine at Cullman Regional. Kelly described the princess party, “All the nurses, doctors and everybody–they dress up like characters. We have food and kids come. We have carriage rides and it’s a really fun experience.” Lillie chose to dress as Princess Aurora for the first princess party. This Saturday, Lillie will have another princess party. She has chosen to dress as Princess Jasmin.
On Wednesday, the community came together to help make sure Lillie has more great days when a parade was organized by friends and family of the Handley’s. The community responded in a way that nobody could have imagined.
“She was so excited! So excited! It was a nice surprise, and she had no idea what was about to happen. I really can’t put it into words. It made her day for sure,” Kelly said of the parade held in Lillie’s honor Wednesday evening. Approximately 800 people came to show their love and support for the entire Handley family and let Lillie know that she is, indeed, a princess.
People came in cars, on motorcycles, in carriages, in limousines and on horseback. Some traveled over 100 miles when they heard the call. Fire trucks came from Cullman, Blount, Marshall and all-around. The outpouring of love was truly magnificent.
Lillie was not only showered with love and support, she was showered with gifts of some of her favorite things. Kelly said, “She loves princesses, LOL dolls, Barbie and anything girly. She loves to get her fingernails done.”
Jonathan and Kelly wanted to thank the community. She said, “We appreciate everyone praying for us and all the support throughout the years that everyone in our community, family and friends have given us. Mainly the prayers. The prayers are what has gotten us through the hard times and I know it’s what will continue to get us through the next days to weeks that we have.”
Lillie is also a fabulous big sister to her 6-year-old twin brothers Gabe and Garrett. Jonathan and Kelly have done their best to keep spirits high at home. They don’t want their children to worry about anything, so they have chosen not to discuss the severity of Lillie’s illness.
Kelly said through tears, “Lillie is a very, very smart little girl. I think she knows but she doesn’t want to talk about it for fear of upsetting me and her dad. I don’t want to tell her because I don’t want her to be upset because Lillie has nothing to worry about. I want her last days here with us to be enjoyable and fun.”
She continued, “We are trying to keep her as comfortable as possible. She is on pain medicine that we give every four hours, even through the night. Each night I set an alarm and get up and give it to her.” Wednesday night, a spot on her chest appeared indicating that her platelet count was low. Kelly asked Lillie if she would consider seeing the doctor Friday to check it out. Lillie said, “I don’t want to go. I am tired.”
Kelly said softly, “She is tired, and I don’t blame her. She’s had a long road. The Lord has blessed us though. He’s pulled us through some really difficult times, and we’ve had some good times and we are hopeful for some more good days with Lillie.”
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