By Tonya Morris
Mommy to Lana
Neurofibromatosis type 1 (NF1)
Lana’s journey started when she was born (August 2017). She scream-cried every day and almost all day long. She projectile vomited after every feeding and wasn’t keeping any weight on. After many doctor visits and admissions in the hospitals, I was finally able to get answers to help her, but it was only the beginning of what now has become our 6 years on this journey.
We went to a doctor’s appointment, and I told the doctor she was developing “birth marks.” After showing picture proof that she wasn’t born with them, another doctor came in and did an exam on Lana. When she was done, she brought in a large medical book that was opened to the page of the requirements for NF1. She told me that Lana may have this. I was told to go home and pack as she may have a stomach tumor that has been causing her 6 months of pain.
“I’m not sure how long you will be there. You will need to pack as much as you can. Good luck to you two.” Those were the last words I remember before feeling like my whole world was ending.
The hospital later diagnosed her with severe acid reflux and that she had no tumor in her stomach. However, they did find an optic tumor behind her right eye. We were told that we would need to rescan in 3 months to see if it grew.
Having the optic tumor and the sudden “birth marks” that appeared, amongst other things, Lana was diagnosed with NF1. Three months later, we did an MRI and the tumor showed growth. We immediately started chemotherapy at St. Jude’s. At the time we thought we were so lucky to have caught it early on before it became an issue.
Unfortunately, the tumor is still present, and has extended to her brain. Lana is now receiving care through Children’s in St. Louis. We are on a trial drug that can hopefully save her life. As of now (August 2023) she is blind in her right eye, and it’s dangerously close to a lot of things that could cause her serious problems.
