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…

hospital — 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.

Author: Andrea M

Oh man, what an adventure! I went into labor unexpectedly when I was 23w3d pregnant. Jaxson was born weighing 1 lb 8 oz. A tiny little peanut, but boy was he feisty. He still is! We love it now, but we probably won't when he is a teenager. I write about our journey and all other things that come with it, including a brain tumor. We look forward to "meeting" you - come hang out with us...we're pretty cool. View all posts by Andrea M

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

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Leda says:

January 16, 2015 at 9:26 pm

Sending all love and strength your way. It is cosmically unfair that you and Jax have to go through this, but I know you are equipped to do so. Lots of folks pulling for you.

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1. Andrea M says:
  
  January 19, 2015 at 8:08 pm
  
  Thank you. Honestly – it does feel a bit unfair, but we can do it! Thanks for being a part of our goofy gang – we really appreciate the support.
  
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laura maikata says:

January 14, 2015 at 8:02 am

Oh I hate limbo!! So sorry and grieving for y’all.

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1. Andrea M says:
  
  January 14, 2015 at 8:32 pm
  
  Thanks, Laura. Tom Petty had it right: waiting is the hardest part!! I will feel better once we have our second opinion. How are you?
  
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The Pinterested Parent says:

January 13, 2015 at 7:34 pm

I want to give you a big hug. I am sending a multitude of prayers for your little one. Here is hoping that your next visit will offer great news with a ton of smiles .

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1. Andrea M says:
  
  January 14, 2015 at 8:31 pm
  
  Thank you! ❤
  
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Alison says:

January 13, 2015 at 7:32 pm

I’m so sorry you didn’t get the results you were hoping for today. It made me sad for you all as I read your update. I can’t imagine going through this after everything you all have already been through. I hope you get the information you need from the second opinion. You guys will stay in my prayers.

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1. Andrea M says:
  
  January 14, 2015 at 8:31 pm
  
  Thanks, Alison. Honestly, it really doesn’t seem fair to have to do this, too. I’m not usually one to complain like that, but having to be in constant medical mode really takes it’s toll, as you know all to well, too!
  
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  1. Alison says:
    
    January 15, 2015 at 7:40 am
    
    We get used to having to be strong, and sometimes forget its ok to be sad and angry and feel like it just isn’t fair. You are not a “complainer,” you’re a Mom with a little boy who deserves a break. Here’s to hoping you leave the next appointment with a smile!
    
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Alana | Rockstar Preemies says:

January 13, 2015 at 6:58 pm

Oh Andrea, I’m so sorry that you didn’t get some super awesome amazing news. But, I’m happy at least for your sake that SOME of it was pretty good! Anytime I think about Jax and what he’s been through I think, man, that is a lot for one family to handle. But seeing how well you guys come together and soldier through these tough times makes me think that if anyone can figure this thing out, it’s going to be you 🙂

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1. Andrea M says:
  
  January 14, 2015 at 8:30 pm
  
  Thanks, Alana. Yes, we will make it thought all right – that’s just what we do around these parts. 😉 I could use a break, though!!
  
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