‘A Safe Place’ for Samantha
Jordyn Leal knows about a mother’s intuition. Her baby, Samantha, had three birthmarks during birth which suddenly increased to more than 50 marks by six months. She also knew it was odd little Sammy only gained five pounds during her first year. Despite the first pediatrician’s advice that there was nothing to worry about, Jordyn knew something was very wrong.
Jordyn changed to a new pediatrician who made a referral to the genetics department at Valley Children’s. Samantha was diagnosed with Neurofibromatosis type 1 (NF1), a genetic disorder that affects 1 in every 3,000 people. An MRI revealed the disease caused an optic nerve glioma, a cancerous growth in the nerves of Sammy’s eyes. Dr. Clair Schmidt, Valley Children’s pediatric ophthalmologist, confirmed Sammy’s right eye was affected by the optic glioma.
“My husband and I were in complete disbelief. It shocked our entire world,” said Jordyn. “But we had full faith that the doctors - and God - would do what was needed for Sammy.”
Dr. David Samuel, Valley Children’s neuro-oncologist, presented a treatment plan that eased the family’s fears. At only 13 months, Sammy received chemotherapy every week for an entire year. After she stabilized during the first round, she came off chemo and continued with her speech therapy, occupational therapy and physical therapy.
But the disease is complex and chronic. NF1 not only caused a tumor behind Sammy’s eye, but also another tumor in her brain. Complications can cause vision problems, seizures, headaches, infectious diseases and learning disabilities. These complications are monitored and treated by multiple Valley Children’s subspecialties including neuro-oncology, genetics medicine, ophthalmology, neurology, infectious diseases and psychology.
“We feel very comfortable about the high level of expertise of all her doctors here at Valley Children’s. When I bring up questions, they always take the time to answer them. I know I will get honest answers because they genuinely show they care. And that’s a huge thing. The last thing I want is to feel that I can’t speak up in regards to Sammy’s care. I’m glad we have the comfort level we do.”
Finding Comfort and Confidence
Now 4 years old, Sammy is on a new chemotherapy plan. Her doctors continue to monitor any side effects from the medications and adjust as necessary until she is stable again.
Through her path to healing, Sammy has bonded with many Valley Children’s staff members. She even calls her child life specialist, Joy Johnson, “her Joy.” She affectionately calls her doctors her own. When she sees a picture of George the Giraffe in the mail, she knows it’s from her doctors.
“After three years of coming in for treatments and therapies, the staff becomes like family. It is our safe place,” Jordyn continues. “As we drive up to the hospital, Sammy gets excited and says, ‘mommy, it’s my doctors!’ She loves the staff here. It makes us feel that we are doing right thing, we are making the right choices.”