Lillyauhna: The Smile of a Fighter
Lillyauhna L. lights up every room. Wise beyond her years from her journey in her short life, she still lives every moment like an 8-year-old should. Thank you to her mom Bridgette for sharing Lillyauhna’s story.
Lillyauhna was born 5 1/2 weeks preterm at 7 lbs 4 oz. She was a fighter from the beginning. Lillyauhna instantly began having trouble breathing. She was suffering from seizures directly after birth. She was put on breathing machines and given medication to control seizures as well as medication to speed up her digestion as she was not digesting food at all. She spent 4 weeks in NICU before being discharged home.
Upon her follow-up visit to her neurologist at 6 weeks of age, Lillyauhna was diagnosed with neurofibrometosis type 1. She began having seizures again at age 9 months and was put back on seizure medications. She developed a little slower than kids her age but appeared to be doing very well.
One night at the age of three, Lillyauhna began crying uncontrollably which was uncommon for her. She would wake up screaming and vomiting; she began to develop many nose bleeds.
We returned to the neurologist who did an MRI scan. I would have never seen the result of this test coming. Lillyauhna had developed a low grade brain stem glioma.
We were referred to neurosurgery. After meeting with the neurosurgeon, we learned her tumor was inoperable and that trying to operate would cause serious neurological problems. We were referred to oncology. We met with the oncologist and he felt it best to monitor the tumor’s progress.
From that point on Lillyauhna underwent MRI scans every 6 months. For nearly 2 years there was basically little to no change. Lilly seemed to be doing well and was progressing right along with little complications.
Her headaches subsided. She stopped having seizures. And she was no longer having nose bleeds or vomiting. We monitored every 6 months until last year when we noticed there had been significant growth over the years. Again we decided to watch the growth every 3 months at this point.
In February Lillyauhna started having dizzy spells, was lethargic, slept often, started to have headaches and stomach aches, and had next to no appetite. I became concerned and called for a new scan.
The next day, Lillyauhna fell down a flight of stairs, extremely dizzy. I rushed her to Scottish Rite ER. We had another MRI which showed a new glioma had developed on her optic nerve. After meeting with neurology, we decided it was time to start chemotherapy. She had her port placed on May 27, 2015 and began chemo on May 29, 2015. She completed chemotherapy in June 2016.
She has stable tumors and is feeling much better these days. She is continually monitored with routine MRI exams and various doctors appointments.
Lillyauhna recently began third grade and remains positive and energetic. She enjoys helping those around her, bringing joy to all she meets.
Lilly has a love for life and is devoted to her friends and family. She brings light and energy every where she goes. Among her many loves in life, Lillyauhna is a pasta connoisseur. She’s the most friendly outgoing little girl I have ever met, who loves her brothers and God above all things. Her faith and love of the Lord strengthens her daily.
She has always been the light of the lives of those she meets. She has a permanent SMILE and LARGER than life personality. Her strength and courage inspire me everyday. Born the only girl with four brothers, she was destined to be a fighter.
Thank you Bridgette for sharing your daughter’s story with us! You can help find a cure for children like Lillyauhna by donating to the Pediatric Brain Tumor Foundation at www.curethekids.org/givenow.
