Lincoln was diagnosed in September 2017 with stage four neuroblastoma after a a few weeks of crying with leg pain and limping. The cancer was in his bone marrow 100% and he had lesions on nearly all of his bones.
He did 6 rounds of chemotherapy in Wisconsin before we transferred care to Memorial Sloan Kettering in NYC. He did 24 sessions of radiation and 7 rounds of painful immunotherapy. On June 4th we celebrated no evidence of disease.
Unfortunately two short months later he relapsed with 5 new lesions on his hip and spine. We stayed in NYC for radiation and several rounds Chemotherapy and his scans in December of 2018 showed improvement but he still had spots on his hip. We transfer to Milwaukee Children’s hospital to do a different Chemo regimen in January 2019, that’s when we started noticing his left eye started crossing. At first we chalked it up to a side effect of radiation and got corrective lenses for him but in February he started having extreme headaches and vomiting. We rushed him in to our local children’s hospital for head scans which showed he had pressure on brain and needed a shunt as soon as possible. We flew to NYC for an emergency surgery and scans which showed he had relapsed on the brain.
He ended up getting radiation to his brain along with a new trial to target brain disease.
That summer we focused on spending time together as a family along with the trial which gave us five more months with Lincoln.
In September he started to experience dizziness and had a hard time walking. We had emergency scan done and found his brain disease had progressed to a point that the doctor said there was no more that they could do. So we went home and spent two weeks with Lincoln before he passed away on September 19th 2019.
Lincoln endured countless pokes, endless days of nausea, and more pain than any adult I know. But he did so with a smile on his face, and joy in his heart. His message to the world would be “Guys, It’s about love. And always remember that God loves you