Under the expert care of our dedicated team in Nemours Children’s Hospital, Florida, Kalani embarked on a path of treatment for juvenile idiopathic scoliosis and neurofibromatosis type 1 (NF1) at 6 years old.
Her journey began in July 2023 when her mother, Monica, noticed a slight curvature in Kalani’s back. Concerned, they sought answers from orthopedic surgeon Dr. John Lovejoy at Nemours Children’s. “An X-ray confirmed that her back had a curvature and an MRI was ordered out of caution to make sure there was not an underlying issue causing the curve,” shares Monica. “The MRI showed she had lesions/tumors believed to be caused by NF1. Following the MRI results, Dr. Lovejoy referred Kalani to oncology and genetics to confirm the diagnosis and begin treatment. When we had a follow-up with Dr. Lovejoy at the end of October 2023, an X-ray showed the curve in Kalani’s spine had gotten worse so he recommended the hospital stay for the halo traction treatment following a surgery to implant MAGEC growing rods.”
Under the guidance of Dr. Lovejoy and the multidisciplinary team at Nemours Children’s Hospital, Florida, Kalani commenced her treatment journey. During the months of December and January, Kalani underwent treatment, receiving halo traction therapy before having spinal surgery to insert the MAGEC rods to address the lengthening and curving of her spine. Kalani continues to visit every few months for the lengthening process. “Also, she will be starting a medication called Koselugo to help shrink the tumors/plexiform neurofibromas she has due to the NF1,” says Monica. “She will have routine visits, tests and MRIs done throughout the year to monitor the NF1 and scoliosis.”
Monica praised the team’s dedication, highlighting their compassion and thoroughness. “Every visit we are well informed and well aware of the treatment plans,” she shares. “Dr. Lovejoy and his team—Joseph Manning, Gregory Chasez, Adetayo Lawal, Dr. Alec Stall, and many more—are an amazing group of specialists and we have such an appreciation for their concern and how they take care of Kalani.”
“During our hospital stay, the nurses on the fifth floor—Amy Latner, Laura Pfeffer, Chelsea O’Neill, Louisa DeSouza, Safiya Bogle-Williamson, Jessy Bazquez-Santiago, Leonard Adams, Lauren Foster from Child Life, Shelbie McLeod, and Becca, who worked to get Kalani into Hospital Homebound for school—went above and beyond for us,” says Monica. “They made us feel like family and made our stay as comfortable as possible. I cannot show my appreciation enough for them. Kalani misses them and they are amazing at what they do.”
Looking to the future, Kalani and her family maintain a positive outlook. “We are feeling hopeful and know Kalani is a strong little girl and can handle anything that comes her way,” says Monica. “We will continue believing Kalani will have the best outcome with all her procedures and treatments. We believe she will live a full life and be able to grow up like any other child her age. She is strong, smart, sassy, very energetic, and so loving.” Their faith, combined with the support of the Nemours team, fuels their optimism.
For those on a similar path, Monica offers this advice, “Be as informed as you can be, research and ask questions. Also, you must believe in the best outcome, remain hopeful and keep your faith in God. With God nothing is impossible.”
As Kalani continues her journey, we remain committed to her well-being and success, shaping a future filled with possibilities.
