Giorgio
Age 6
Giorgio’s story of recovery began in early November, at the age of 4, when Mom LeeAnn and Dad Andrea noticed something was just “off” about Giorgio. Usually extremely healthy, he had trouble sleeping, had frequent and random episodes of vomiting, and had spoken of frequent headaches that began affecting his appetite. After weeks of consultation with specialists and growing frustration at the seeming lack of progress, on November 22nd, 2022 an MRI showed a large cystic mass in the right frontal lobe of his brain. On December 5th, Giorgio undertook 8 hours of surgery that resulted in a near-total resection of a 6x4x2cm tumor, followed by emergency surgery to remove an arterial line that broke in his left wrist and needed to be removed before starting moving through his body.
The pathology report found it to be cancerous and consistent with a malignant and rare form of brain cancer called atypical teratoid rhabdoid tumor, or ATRT. Giorgio’s oncologist at Children’s Hospital in Minneapolis suggested the ACNS0333 protocol and quickly began with two rounds of induction chemotherapy. Induction proved to be difficult on Giorgio’s body. During treatment, he had to overcome c-diff, and severe respiratory issues, and he has experienced severe neuropathy in all extremities that are still lingering to this date. Quickly after, Giorgio completed three rounds of high-dose chemotherapy with stem cell rescue therapy at U of M Masonic Children’s Hospital in Minneapolis, impressing the staff with his determination and willingness to play and move despite an unexpected and concerning trip to the ICU. The last portion of the treatment - 30 sessions of Proton beam radiation therapy at Mayo Clinic in Rochester, MN - is expected to conclude the day after his 5th birthday [July 31st, 2023]. While in Rochester, another surgery was needed after a Saturday night visit to the ER for a malfunctioning Hickman. Prior to the first of those sessions, he witnessed another patient ringing the bell for the end of her treatment and he is eager to do the same.
While the road ahead is still long and includes monthly lumbar punctures and oral chemo, his family is convinced he will continue to lead the way with his usual playfulness and bright eyes. Giorgio has been described as a spicy noodle, maintaining his silliness and smile throughout a brutal chemo regimen way too familiar to the families that have to deal with this disease. His body shows the sign of the seven surgeries he had so far; he is sporting a pair of flashy AFOs to assist with walking and brand-new "super hears" that should help him throughout his life with the chemo-induced hearing loss. Nevertheless, he continues to be bilingual, fluent in English and Italian, bringing joy and an inspiring example to everyone around him on how to take on seemingly overwhelming challenges. A step at a time, toward the final line.
Update on Giorgio's Journey ~ July 30, 2024 [Giorgio's 6th Birthday]
Giorgio is out of active treatment, and in the final cycle of the SickKids maintenance protocol. His last day will be on his 6th birthday, July 30th. He has a routine MRI the same day to monitor what appear to be post-radiation spots, as well as observe how his shunt is helping with managing cerebra fluid collection.
He continues with weekly PT rehab as neuropathy in his legs very slowly improves. His chemo-induced hearing loss worsened in May so he was fitted with a new stronger pair of hearing aids and has started speech therapy. A recent appointment with a neuro-psychologist confirmed our concerns with his struggle to focus, so he will likely begin therapy and/or medication to cope with ADHD in the coming months.
He's been enjoying his summer at the cabin, swimming lessons, and a trip to Italy to visit family. He loves books, superheroes, and playing with his younger sister.
September will be a big month. Kindergarten starts, he'll be the only child honored at a local brain tumor non-profit gala after the nomination by his oncology team to recognize how he has positively taken on the challenge, and a baby sister will join his family.
We continue to remain optimistic that Giorgio will remain healthy and cancer free and want to help researchers and nonprofits to advance the outcome for kids impacted by pediatric brain tumors.
To keep up with Giorgio’s journey, check out caringbridge.org/visit/giorgiog or “Un Aiuto per Giorgio” on Facebook.