Jan 16 2017

A new year. A new set of circumstances. New plans.

Not the greatest of plans, but plans none the less.


1.9.17 was our most recent MRI and news wasn’t good. While the primary and secondary sites that have received radiation are holding fairly steady, the tertiary ventricle tumors have grown quite considerably.


This means the carboplatin / etoposide combo didn’t do a thing over the last two months.

This made the decision on going in to the CDK4/6 trial opening on Jan 30th at Children’s Hospital Colorado very easy to make.  With the Foundation One genetic testing in hand, we know that Joshua is missing the CDK4/6 inhibitor in his tumor so it makes most sense to attempt this trial over any others.

But this medication, Abemaciclib, is purely in Phase study stage – and in pediatrics, this is Phase 1, so purely being processed for toxicity in children (Adult toxicity has been gauged). The best we can hope for is to see lack of change – which will be enough for us. No change would mean we have a window where a new treatment might come available that might prove better at reversing the tumors.

Based on all the new information, we spoke with Denver Hospice on Friday to start setting up with them for what seems to be the inevitable sometime in the next 3-12mths. While its hard to see why when Joshua seems so ‘robust’ currently, we are seeing the small things – like short term memory – change, along with his ability to be able to certain things because his head ‘feels weird’. But we want him to get to know the service, and the people who will be around the house before it becomes too confusing for him. I can’t imagine anything worse than waking up one day to a room full of strangers standing around you.

Life, yet again, changes.