N.E.D.

No three letters have ever held more significance for us than N.E.D. (No Evidence of Disease). We are thrilled to report that on Friday we received the results from his scan and for the first time, Lincoln was officially declared N.E.D.

A photo of Lincoln holding a rock he painted, it says brave.

Lincoln will start his final frontline treatment course this month, Immunotherapy. He will receive six four week cycles of Immunotherapy. The first five cycles consist of 14 days of GM-CSF shots, after the first three or four days, Lincoln will go inpatient to receive ch.14.18 (this is the actual immunotherapy drug and is incredibly painful) he'll be in patient for 5 days. Then he'll do 14 days of accutane (yes, the same stuff they give teenagers for acne). Accutane causes cells to age so the theory is that it will cause any potential neuroblastoma cells to age into ganglioneuroblastomas. The final and sixth cycle will consists of just accutane every day.

So if things go according to plan, Lincoln will be done his official treatment in February 2020. We are still working out what we might do after his initial treatment - options include the DFMO trial or the vaccine trail. Lincoln's doctor at Hopkins wouldn't recommend either treatment but he was clearly skeptical of DFMO and intrigued by vaccine.  So I don't know where that will lead us, we'll keep asking questions until we're comfortable making a decision.

Thank you for following along even with delayed updates. It's a tough journey and I'm grateful to have so many folks checking in on us.

xoxo,

Megan