We Didn’t Leave With a Smile, But I Guess It Could Be Worse – Results From the Brain MRI

Gang. We did not get the best news today. Jax’s tumor has grown. Don’t freak out yet, though, ok? There are some good things, too.

The tumor has increased in size , but only by a couple of millimeters. And unusually, the tumor no longer lights up under contrast. These are two good things we have going for us! If a tumor lights up under contrast, that means it’s actively growing. So, it’s really good news that today, the tumor did not show up under contrast like it had in the previous two scans.

However, just because it was not growing today, does not mean that it won’t start growing again tomorrow. That’s the part that sucks. We are in limbo.

The neurosurgeon we saw today at Gillette Children’s is “on the fence” (his words). He consulted with some of his colleagues and they decided we should rescan again in 4 months. It makes me nervous that it was not a clear yes or no answer to wait.

We decided right after diagnosis that at any sign of change we would seek a second opinion. We need to make sure that waiting is the best choice right now. We sent all of Jax’s images over to the neuro-oncology department at Children’s Hospitals and Clinics of Minnesota. They have excellent neurosurgery and neuro-oncology programs. It will be interesting to see what they say.

If they say that it’s time to take action – either chemo or surgery – then we will have a very hard choice to make. It would be reassuring if they also agree that waiting is the best course of action for now. I don’t know when that appointment will be, yet.

This is a blow. But I suppose the only way we would have left happy would have been if the tumor had shrunk! We will just keep putting one foot in front of the other, like we always do. It’s getting more and more difficult to do that, though. I’m feeling scared and defeated tonight. Will Jax ever get a break?

Anyway, we had some homemade “ska-betty” and meatballs tonight for dinner. (Are you seeing a common stress-food theme here?!) Jax burped and said “skeem, skeem” (excuse me). That kid cracks me up. He has no clue (as it should be) and is happily playing trains with his daddy right now. My brave little boy…

Jax is preparing his anesthesia mask by smearing it with grape-flavored chapstick. He thought that was pretty cool and he wants you to smell it, too.