Age 5

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...Lincoln was diagnosed with ATRT on January 29th 2021 at 3 1/2 years old.

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.

In September, he had a “Stable” MRI, which means there was no big difference from the MRI taken before his Bone (Stem Cell) Transplants, no growth but no significant shrinkage either. His next MRI in December showed multiple new tumors and we had to make a hard decision; radiation…

We had been very against radiation through treatment because Lincoln has Autism Spectrum Disorder (ASD) combined with Global Delay. But we had little other choice as without it there was no scientific chance of survival. Within 2 weeks, Lincoln started radiation 5 days a week for 30 treatment days.

We’re currently waiting for the next MRI in mid June. We are hoping for a stable scan, especially because Tazemetostat (an oral chemotherapy) has been on hold for the last 9 months. We’ve been waiting that long to be able to give Lincoln the liquid version of this specialized medication.

Saying treatment is...well "difficult", is such a small word… But Lincoln has been such a fighter, he still smiles, laughs, dances and sings!