On Wednesday, September 14th, 2022, our healthy baby, Lilliana Sofia Rocha, went in for a routine check-up, smiling at the doctors and nurses. Lilli’s pediatrician noticed her head had grown significantly since her last appointment. We were sent to the local hospital for testing and then transferred to CHOP (Children's Hospital of Philadelphia). One week after her initial appointment, Lilliana had
surgery to remove a brain tumor; a CHOROID PLEXUS CARCINOMA, grade 4 of 4. This is a very rare and aggressive form of cancer. Due to complications during her 14+ hour surgery, Lilliana lost a lot of blood and spent weeks in critical condition. By the grace of god, and with prayers from her army, Lilliana's condition bettered, and she grew stable. Genetic testing revealed a mutation in her TP-53 genome, meaning Lilliana has Li-Fraumeni Syndrome. This means her body is susceptible to the growth of tumors and does not have the tools needed to fight those growths off. After 6 months of chemotherapy, on July 27th, 2023, Lilliana's brain has been labeled with the term N.E.D. or No Evidence of Disease. While this is a beautiful step in the right direction, her TP-53 mutation will continue to have us all on our toes. Lilliana will continue to receive full body scans and MRIs to combat any new cancerous growth throughout her body. At a recent Neuro-Opthamology appointment in August of 2023, we learned that Lilliana has irreversible Homonymous Hemianopia, a brain injury from her tumor. This means that she is blind on the left side of both her eyes. We have been faithfully by Lilli's side daily and are doing everything in our power to give this little girl a fighting chance. Please join this page if you wish to see updates on our warrior princess' journey. Lilliana is in for the fight of her life. Her fight is our fight. Thank you for joining Lilliana’s army.
