Five year-old Juliana from South St. Louis County, MO is a sweet and cuddly 5 year old. She loves animals, music, books, waffles, pancakes, dinosaurs, deer, baby dolls and big trucks. She loves her two sisters, her mom and her biggest love is probably her daddy. She has been through more in her 5 years of life than many will go through in a lifetime, yet her smile and positive demeanor would reflect just the opposite.
Juliana was born at 30 weeks gestation along with her twin sister, Carlie on June 6, 2018. Mom, Stephanie recalls a recommendation to “end her pregnancy” because the likelihood that her twins would make it to birth was minimal. They DID make it….but little did Stephanie know this was the first of many challenges she and Juliana would face together.
At just 11 days old and 2.5 pounds, Juliana developed advanced stage NEC (necrotizing enterocolitis) and required emergency surgery. Stephanie was told she was becoming septic, that surgery carried grave risk and that she might very well not make it through. Juliana DID make it this time, too.
Juliana’s emergency surgery involved a colostomy placement and a gastrostomy button placement for feedings. Her doctors at that time said she would be tube-dependent until she was at least 5-6 years old. She spent 3 months in the Neonatal Intensive Care Unit of her delivery hospital before going home, yet she never used that button for a single feeding. “At her one-year NICU follow-up, the neonatologist that saw her had to review her chart because she didn’t believe Ana’s diagnosis,” says Stephanie. “She said in her 40-plus years in neonatology, she has seen a handful of kids survive her diagnosis, but she had never seen one NOT be tube dependent and already have their button pulled by one year of age,” Stephanie says. “I told her……Meet Ana.”
“I learned early with Ana to expect the unexpected and never, ever tell her she can’t or won’t do something. This was a girl who was going to write her own book and not let us, her team or medical statistics write a single page of it,” Stephanie says.
Fast forward one year later, in December 2019, Stephanie’s husband and Juliana’s father, Adam, died suddenly at the young age of 35 from heart failure. He was found to have had severe arteriosclerosis and left ventricular hypertrophy. “My heart broke for all of my children, but it broke in a special way for Juliana. Adam was her best friend. They understood each other. They could speak without saying a word. Their bond was incredible,” Stephanie said. Adjustment to some semblance of a “new normal” began, but Stephanie had no idea what MORE was in store in just a few short months.
In late June, Juliana began complaining that she was having trouble seeing. Stephanie noticed that her right eye was not tracking as well as her left and she made an appointment for the eye doctor. They went about their way while awaiting that appointment.
“On July 11, Juliana woke up fussy. Her balance was off, she was walking with her hands stretched out in front of her and she was running into objects, doors and walls.
I brought her immediately to the Emergency Department at SSM Health Cardinal Glennon and they did a CT scan right away. The doctor came back in, closed the door, took a deep breath, sat next to me…..and quietly told me that that scan showed a cancerous mass in her head,” Stephanie says.
“I wasn’t the mom who thought it would never happen to her child. I knew it could. I knew we were fortunate that we’d never heard that c word. I was the mom that stalked Facebook pages and prayed for these kids, but never liked, followed, shared, or commented on anything. I didn’t think any of that would matter to the family or make them feel any better. I was the mom that didn’t understand the magnitude of having people you don’t even know rally around you. I didn’t realize that the words of encouragement from family, friends and strangers is sometimes what holds you together when you feel like falling apart,” Stephanie says. “On July 11, I was hit with what it’s like to no longer be a spectator and Facebook follower of a childhood cancer. After that CT scan, when the doctor walked into our ED room to tell us that news, my world as I knew it was shattered for the second time in 7 months. I was recently widowed. My kids just lost their daddy. How could this be? Not right now. I thought Juliana is an identical twin. How will I move forward if she doesn’t make it knowing that there should be two of them? How does her twin deal with the PTSD of losing dad and now losing the life that she’s always known? Carlie has never known a day without Juliana. How do I tell our 10 year-old that her best little friend is going to have to fight for her life?”
Over the course of the next 24-36 hours, Juliana developed several other issues like increased intracranial pressure and loss of vision in both eyes. A few days later, her diagnosis was officially confirmed as stage 4 Neuroblastoma. “I was told her chances of survival were 50/50,” Stephanie said.
Over the course of the next year, Juliana went through countless rounds of chemotherapy, radiation, immunotherapy, stem cell transplant, 10 surgeries and dozens of other procedures. One of Juliana’s tumors was wrapped around her optic nerve. Because of that pressure, she had lost her vision before her diagnosis was even confirmed. Another tumor (the primary) was wrapped around the blood supply to her left kidney. That kidney was removed during the surgery to remove that primary tumor. The tumors on her spine and skull were too dangerous to remove but were monitored for changes in size and behavior throughout her treatment(s). As time went on and treatments progressed without progress that matched it, her chances of survival went down and down. Despite intense frontline chemotherapy, surgery and stem cell transplant, Julian’s cancer still grew. She had new areas of uptake on her scans in February 2021. A cure seemed unlikely and Stephanie and her care team pivoted to a more palliative- type of therapy for Juliana. Juliana was in pain and required tube feedings and IV nutrition just to keep her going. She continued with antibody therapy and low dose chemo with a goal of keeping her comfortable and allowing her the best quality of life she could have.
“Eight months later, Juliana was taking all food by mouth eating almost more than her two sisters, combined,” laughs Stephanie. “She was no longer on IV fluids or pain medications and was running around like a normal, crazy, stubborn 3 year-old,” Stephanie said. ”I knew, realistically, we were blessed to have that time and that it was unlikely to last numerous months or years. From a medical standpoint, we know her survival chances. But Ana plays her cards with an abundance of faith, and she won’t stop until she’s ready to. I promised Ana I would be on whatever page she was on. If she wanted to fight, I’d fight forever. If she wanted to be done, I’d honor her wishes to go home and be free. So we enjoy the days with her, take the good as it comes and keep the faith,” Stephanie says.
Since October 2021, Juliana’s treatment has included a vast array of things. “We are blessed to have a variety of options on the table. We can do the aggressive chemo or low dose chemo, antibody therapy, MIBG therapy and possibly radiation. Determining where to go each time we have our scan results is always a little difficult with Juliana because it is all uncharted territory. Ana is anywhere but close to textbook neuroblastoma. The harshest of chemo did nothing. The low dose chemo that was only supposed to work as comfort care did more than the most brutal treatment she’s seen. She shouldn’t have made it out of the PICU at diagnosis. She was sent home after transplant with a hospice and palliative care team. That was over 2 years ago. It is all so hard to determine where we will go next. I remember Juliana’s surgeon saying she was going to write her own book and that no one on the medical team could write a single page for her. He was right. I just never imagined she’d still be writing it three years later,” Stephanie said. “She is currently on low dose oral chemotherapy and a small dose of daily pain medication. She started pre-k homeschool in August 2022 and is enjoying all of her favorite things as frequently as she can.
Juliana is well known throughout the hospital and has been seen by multiple subspecialties such as neurology, neurosurgery, ophthalmology, gastroenterology, endocrinology, audiology, cardiology, hematology and oncology. She has utilized therapy services such as physical therapy and occupational therapy and has taken full advantage of the umbrella of Child Life Therapy services including Child Life, Music Therapy, Art Therapy, Dance Therapy and, of course, Thor – the facility dog. Her “special people” she treasures during visits are Dr. Lauren Draper, MD (her oncologist), “Jamie”, her procedural sedation nurse, and “Maddy”, her nurse and “best friend” in The Costas Center. “The staff have connected us with other support organizations, as well,” says Stephanie, “such as Make-A-Wish and Friends of Kids With Cancer who have made such memorable moments for both her and our family. She LOVES the books available and being read to while she’s in the hospital, so we did a book drive and collected over 700 books for the Shining Star School. Her sisters submitted a t-shirt design in honor of Juliana for the hospital’s Thankful Threads t-shirt contest – which ended up being the winning design,” comments Stephanie. “Things like this are significant and help create positive memories when you’re faced with so much unknown.”
“Cardinal Glennon has been our second home. It sometimes breaks my heart that this feels more like home to her than her actual home. But it speaks volumes about the hospital and our team. She’s never afraid to come here. She smiles, waves and talks to everyone. She says I love you to everyone she meets, and she truly means it,” says Stephanie. It’s sobering to speak about, but Juliana has spoken about dying, and her wishes for her to be at her Cardinal Glennon home if and when that happens. As young as she is, and having NOT talked about it with her, she has somehow planned all of her wishes surrounding that. She has asked to be cremated and has furthermore – asked me to bring her back and drive her past Cardinal Glennon after that happens. She even asked her music therapist (Carrie) if she’d be willing to meet me and play her “Glennon song” (I can see clearly now – by Johnny Nash) for when I drive by! What child has that foresight?? The fact that she has that sense of peace here and that she talks about it without fear is a comfort that I can’t even put into words,” admits Stephanie.
“We do not know how much time Juliana has left or what the future holds for her,” Stephanie says. “What we DO know is she will continue to fight with a smile on her face and unparalleled faith until it is time for her to go to her heavenly home. Statistically, time is not on our side, but for now, we will treasure every moment with her and know that every day we get is a gift.”
Juliana’s journey and updates to her story can be followed on Facebook as Ana’s Army: