Story of Healing
St. Martin Parish
Melanie and Duncan Dubois were very familiar with Neurofibromatosis (NF), a genetic disorder of the nervous system, because Duncan himself lives with this disorder. Adults living with NF have a 50 percent chance of passing it to their children, so Melanie researched the disorder extensively to know what to look for when they began having children of their own. Between her research and his personal experience, the two felt prepared for the possibility of their children having NF. Fast forward a few years later, Melanie learned they were not prepared for what was to come.
On May 17, 2004, Melanie and Doug welcomed Caroline into the world. Like her father, Caroline developed one of the seven criteria for NF: café-au-lait spots or hyperpigmented macules. Typically, patients only need two of the seven criteria to be diagnosed. When Caroline was about six months old, her pediatrician in Lafayette decided to have Caroline genetically tested for NF. Surprising, it came back negative. “In my gut I knew she did have it, but I decided to go with the test,” said mom, Melanie.
Her local pediatric ophthalmologist thought her test may not have been as affective as they originally thought. The doctor warned Melanie and Duncan not to get their hopes up that Caroline was actually negative. Caroline started showing more criteria of NF, groin and arm freckling, as well as indication Lisch nodules in her eyes. “In the back of my head, I just knew. I knew she had it,” said Melanie. Caroline was diagnosed with Neurofibromatosis when she was four years old, just like her father.
At a routine doctor visit in November of 2015, her local pediatrician noticed that her vision had declined. Her doctor did an MRI to check her eyes and sent her MRI off to the tumor board at Children’s Hospital New Orleans. In her MRI, the doctors at Children’s Hospital noticed an optic glioma, a tumor on one of her optic nerves. Only about one third of NF patients develop optic gliomas.
After the optic glioma was discovered, now 11-year-old Caroline was referred to pediatric oncologist, Dr. Dana LeBlanc, at Children’s Hospital New Orleans to start her treatment. The family learned her chemotherapy was going to be in the high 90th percentile for effectiveness, but the tumor would most likely not shrink. “It wasn’t that she was dying,” recalls Melanie. “It was just a journey we had to take.” Caroline started her treatment in January 2016 after the holidays.
At first, Melanie tried to keep their lives as normal as possible. She was still teaching, and she and her husband would take turns bringing Caroline to chemotherapy. After a few months of chemotherapy, Caroline just physically couldn’t handle it. Her parents remember she stopped eating and sank into a depression once she started to lose her hair.
Her care team decided to give her a nasogastric tube (NG tube) to ensure her body got the nutrients it needed to help her fight her tumor. “After we put in her feeding tube, it ended up being a benefit for her. She cried before, but it ended up being a stress reliever,” said Melanie.
Melanie was able to finish the school year as a teacher, but as the fall semester approached, she realized that Caroline needed her mom by her side. Melanie said, “Plan A was not healthy for her, so we ended up with plan B. I stayed home with her.” They immediately saw an improvement in Caroline’s physical and mental health.
By then, Caroline had developed neuropathy, or nerve damage, as a side effect from the medicine she was taking to shrink her tumor. Her neuropathy required physical therapy. With all the medical treatments she was enduring, Caroline’s parents made sure she had mental health counseling. Her parents recall that mental health awareness was not as prominent then as it is now and feel that her counseling during and after her treatments made a huge impact on her healing process. Caroline would always tell Melanie, “You know mom, something good is going to come out of this.”
Her chemotherapy would last six to eight hours, so she spent most of her time at Children’s Hospital hanging out with her nurses. Caroline’s favorite nurses were Jen and Chris in the Hematology/Oncology department. Caroline and Jen loved to talk about the TV show Survivor and couldn’t wait to catch up and talk about new episodes during each treatment. The family felt having the same nurse each visit was a blessing because Caroline was able to build a comfortable relationship and bond with her nurses.
In the last six treatments, she became allergic to her chemotherapy. In order to finish her treatment, her care team had to dilute the medicine and give it to her over a longer period of time. She stayed at Children’s Hospital as an inpatient during her last treatments to ensure her body was reacting safely to the chemotherapy.
In June of 2017, Caroline finished her chemotherapy. After 52 total treatments, Caroline’s tumor miraculously shrunk over 90 percent and remains the same size to this day. This summer will mark five years with no chemotherapy, and Caroline will continue to have scans every year to keep an eye on the tumor. Caroline came back this summer to check out the newly renovated Hematology Oncology space and was finally able to ring the bell celebrating her last chemotherapy back in 2017.
“I would reflect on the fact that counseling is beneficial. For us personally, we wanted a support group for her. We were looking for other kids there for her to talk to. It was hard to find. I should have gotten her mental health counseling sooner. Not that it would have changed it, but it would have given her an outlet. Honestly, not just for her, but for us. The entire family. It was a traumatic experience. People don’t know. I don’t want anyone to ever know,” said mom, Melanie.
Dr. LeBlanc still checks in with Caroline and her family, making sure they have everything they need. Melanie believes that Dr. LeBlanc is always one step ahead of them and is the reason she can stay calm when her mind goes to the worst.
Now a senior in high school, Caroline plans to become a counselor to help people with their mental health like those who helped her. She is a member on student council, campus ministry, senior modeling, and the bowling team. “Even before she was six, she just always had a giving heart,” said Melanie. Caroline is involved in local cancer foundations and helps to raise money and awareness for children and adults battling cancer, just like her.