Health Connect: Hadley's Story
In honor of Childhood Cancer Awareness Month in September, we interviewed CHDC OB/GYN Nurse Practitioner, Krista Dankiw-Ludwig, to learn more about her family’s journey. Over the past six years, Krista has navigated life as a brain cancer research advocate, healthcare provider, and most importantly, a parent. Krista tells us how she’s used her experience to champion pediatric cancer research and share an important story of hope for her daughter, Hadley.
When Krista Dankiw-Ludwig noticed something was wrong with her 22-month-old daughter Hadley in October 2019, she first thought it was just another ear infection. Hadley was on her seventh ear infection and her family was planning to schedule ear tube surgery. But on the morning of October 28th, her toddler suddenly couldn’t walk.
“I picked her up out of the crib and put her on the floor in a standing position and she just fell,” Krista recalled. “It wasn’t like she was dizzy. It was as if she had forgotten how to walk.”
Krista’s gut instinct told her something was seriously wrong. She rushed Hadley to the hospital, insisting on more tests. At the first ER, doctors suggested vertigo. Krista pushed for an MRI but was turned away. “I told my husband, ‘I think Hadley has a brain tumor,’” she said. He thought she was overreacting, but she drove straight to Children’s Hospital of Philadelphia (CHOP).
There, her fears were confirmed. After hours of sedation attempts to capture imaging, doctors gathered outside Hadley’s room. “I’ll never forget the look in their eyes,” Krista said. One of the doctors on Hadley’s care team pulled her aside and delivered the words no parent ever wants to hear: your daughter has a brain tumor.
A Rare Diagnosis
The best hope was a complete surgical removal, known as a “gross total resection.” On October 30th, surgeons operated for hours. Against the odds, they removed the entire visible tumor. Hadley’s recovery was remarkable - aside from a short-term swallowing issue, she left without common neurological complications many children face. At this point, the brain tumor was removed, but Krista was still waiting for a diagnosis. She hoped the tumor was benign, but 10 days after surgery they received the pathology report.
Hadley was diagnosed with Posterior Fossa (PFA) anaplastic ependymoma, a rare and aggressive brain tumor that doesn’t respond to chemotherapy. Krista was given a paper with the diagnosis that confirmed her worst fears, that this subtype of ependymoma (PFA) has the “poorest prognosis”. With a high rate of recurrence, it carries serious risk even with successful removal of the tumor. This was a devastating diagnosis for a family who only days before were enjoying a trip to the Poconos and had no idea how their lives were about to change.
After reading the prognosis, Krista told the care team, “Please do whatever you have to do to save my baby. Just keep her here on earth – we will figure out the rest.”
Treatment and Recovery
The type of cancer Hadley was diagnosed with typically isn’t treated with chemotherapy, but she did undergo 33 rounds of brain radiation as a part of her treatment plan. This treatment plan required daily trips to CHOP and daily sedation for Hadley for almost seven weeks straight. Radiation finished up in January 2020, but the whirlwind didn’t stop there. Just a few weeks later, Hadley developed a life-threatening infection from her implanted port and went septic on Valentine’s Day. She spent two more weeks in the hospital before doctors removed the port. Miraculously, she hasn’t needed it since.
Hadley’s prognosis, however, remains uncertain. Children with her tumor type face an estimated 66% chance of recurrence, and if it returns, options are very limited and often ineffective. Often, a recurrence in the world of ependymoma means multiple recurrences that become more frequent and bring devastating outcomes. “Some kids don’t make it past two years without a recurrence,” Krista explained. “Hadley just celebrated five years cancer-free. She’s truly a medical miracle.” Hadley requires close monitoring through neuroendocrinology, frequent hearing tests, and has just moved to yearly brain and spine MRIs for her neuro-oncology team. “We actually lost count of how many MRI’s Hadley has had, somewhere close to 30.” Awaiting her MRI results never gets easier, and “scanxiety” is a true, dreadful thing.
Family First
For Krista, the journey has been as much about advocacy as survival. As a nurse practitioner, Krista found that some of Hadley’s care team would speak to her in complex cancer terms. She asked doctors to speak to her like “any other mom who was just told that their daughter has cancer.” It was important to Krista to be Hadley’s mom first and foremost throughout her treatment.
The experience also reshaped her family life. While Hadley, now a second grader, doesn’t remember a lot of this experience, her older brother Kyland does. As a kindergartener at the time, he witnessed tubes, incisions, ports, ICU stays, and difficult conversations. He continues to struggle with anxiety tied to those memories.
“Everything in our lives is marked as before her cancer diagnosis and after her cancer,” Krista said. “You never really move on; you live with it.”
Turning Survival into Advocacy
Over the last 6 years, Krista poured her energy into childhood cancer awareness and research advocacy, serving on peer review panels for the Department of Defense and fundraising through campaigns for the National Brain Tumor Society and pediatric cancer community. It’s important to Krista to volunteer her time because she knows that if Hadley were to have a recurrence, she wanted to be able to look back and know she did everything she could.
“It’s not just about Hadley,” Krista said. “Pediatric cancer research receives only 4% of federal funding. Families like ours depend on private donors and organizations to fuel hope for better treatments. If your child has a recurrence, you want them to have the best treatment options available.” Krista expressed the importance of improving treatment options for cases like Hadley’s, where chemotherapy could cause negative side effects.
Living with #Hope4Hadley
Krista and her family have learned to embrace each day. “We used to treat her like a ticking time bomb. Now we try to enjoy life and make memories. We don’t know what the future holds, but we’re grateful for every moment.” Hadley loves reading and playing with Kyland. Most recently, they’ve been dressing up as park rangers and exploring the woods near their home. Hadley was just honored as one of the “Fearless 43” as part of the Philadelphia Union’s Kick Childhood Cancer campaign on September 20th in collaboration with the Kisses for Kyle Foundation. She was treated to a very memorable day and was able to meet all the soccer players and go onto the field at Subaru Park.
When talking about what advice she would give to families navigating something similar, she said, “I wish we had looked at Hadley as a whole and stayed away from statistics. For five years she’s been cancer-free and in those five years I’ve probably lost so much sleep and gained so much anxiety. She didn’t have a recurrence, but it was all that we had prepared for, worried about, and thought about. I would tell people to look at the patient, not the statistics and to have hope.”
Hadley’s story is one of resilience, advocacy, and a mother’s instinct. Against the odds, she is thriving, and her family is determined to keep pushing for the research and awareness needed so that more children can have the same chance.
The #Hope4Hadley team will be joining their 3rd annual Race for Hope this October to raise money for the National Brain Tumor Society (NBTS). They will be walking on Saturday, October 11th, wearing their best purple, Hadley’s favorite color, and gold, the official childhood cancer awareness color. To learn more about the Race for Hope and #Hope4Hadley fundraising efforts, visit: http://www.braintumorcommunity.org/goto/KristaDLudwigH4H
Thank you to Krista Dankiw-Ludwig, MSN, CRNP, WHNP-BC, OB/GYN provider at CHDC, for sharing her family's story. If you have a patient story that you would like to share, please speak to your provider or call 610-326-9460 and ask for our Marketing Department.
If you would like to schedule an appointment at CHDC, please call 610-326-9460 to speak with a Patient Services Representative.
