Lincoln was diagnosed with ATRT on January 29th 2021 at 3 1/2 years old and spent his 4th Birthday in the hospital getting chemo.
On January 24th 2021, Lincoln found an unlocked window on the 2nd floor and fell out of it. He was rushed to the closest trauma center but miraculously enough he didn’t sustain any injuries aside from a few surface abrasions from the bush he landed on. Because he’s non-verbal and can’t usually indicate an injury, they took further steps to get multiple CT scans which found an abnormality in the base of his brain. We were referred to get an MRI to further investigate. Just 4 days later he had the MRI.
A word no one wants to hear... Tumors, throughout the brain and down the spine...
The next morning Lincoln had a biopsy of the tumor lowest in his spine... Cancer, the doctors couldn’t believe it. We had a full pathology within a few days, Rare ATRT Brain Cancer. 3 days later he had a craniotomy to remove one of the biggest tumors in his brain (the only operable one) and upon recovery just weeks later started chemo before we even left the hospital from his surgeries.
Since then, Lincoln has had 3 high dose chemotherapy cycles and 3 stem cell transplants under the ACNS0333 Protocol.
Because of his ASD he’s not able to do radiation because of the detrimental brain damage that would occur.
He is currently awaiting approval for Tazemetostat to hopefully help cure the remaining tumor.
Treatment is...well, difficult. It’s such a small word…but Lincoln has been such a fighter, he still smiles and laughs. This small break between treatments has been so good for him and we’re hoping his MRI next month in December remains “stable” meaning no significant change (no growth).