OK, gang – we got the results from Jax’s brain MRI. Do you want the good news or the bad news first?
OK – The good news is that Jax’s MRI did not show any of the brain damage they were expecting to see!
Are you ready for the bad news? (Yeah, neither was I.)
Jax has a brain tumor.
During the MRI, they found a mass in Jaxson’s brain that lit up when they did the contrast dye. It is about the size of a dime and is located on the right thalamus.
We are very glad that we decided to go forward with the MRI because we caught the tumor now, when it is still small, but are completely floored by this incidental finding.
At this point, his neurosurgeon is fairly confident that it is a low-grade, high-water-content, benign tumor – which is very, very good news! We were referred to a pediatric neuro-oncologist to be sure it’s not cancerous.
It is possible the tumor is causing the problems with Jax’s left eye and left foot.
If a benign tumor is found in a different part of the body (like your leg or arm), doctors usually leave it alone until/unless it starts causing problems. In the brain, however, any tumor is a huge deal – they usually do not let them hang around.
If Jax’s tumor was near the outside of his brain, he would probably already be scheduled for brain surgery.
However, the thalamus is deep in the brain. Thankfully, the neurosurgeon said there is a clear path to the tumor, so surgery is possible, if and when it’s necessary. Surgery to remove the tumor will be extremely difficult and intense and the risk of permanent brain damage is high.
Doctors are weighing the risks of leaving it in and watching to see if it grows or of removing the tumor right away. Right now, we are scheduled to go back for another MRI in October to check for growth. But, after we meet with the neuro-oncologist, we might have a different plan.
We do not know what will happen, yet.
We are completely overwhelmed with this news and are having a hard time processing it. And we don’t really have any answers.
Mainly, both Steve and I are really pissed off! Is Jax ever going to get a break?!
We are going to take some time off from the blog (and the world in general) for a week or so, to give us some time to process and make a plan with our new neurosurgery team. (HA – and here I thought we were in the process of crossing specialists off the list!)
The universe is kind of being an asshole.
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An Early Start 
Oh, Andrea, I just saw this (in conjunction with your wonderful celebratory photos!), and am stunned. Yes, the universe deserves a big F-you for this one. My response is the same as yours–sweet Jax deserves a break!
But, I see the light, too. That if the universe was going to hand a beautiful boy far more than his share so early in his days, it also sent him an amazing gift: you. His family. His family who loves him so well and cares for him so perfectly and still knows how important celebrations are that they can ignore their fear for a day and just eat cake! I will share this: that I have friends who have similarly been handed more than their share, and the grace and love of the family wins out over the crap every time. I’m figuratively holding your hands and hearts as you go through this next part of your journey, and so many others are, too. May the cake days outnumber the crap days. And happy second birthday, Jax!!
xoxo
Leda
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Thank you so much! It feels like a lot someday’s, but when I see Jax smile and belly laugh, it makes it all worth it a million times over! That kid is something else… ❤
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Oh lovely lady, I am so sorry. I am just catching up with your blog and only read this now. It is good it’s not PVL (you know Boo has that, right? It’s the cause of his CP). But this must have been devastating news. We found out Boo had brain damage when he was days old. No big surprises when he had his MRI. This must have been such a shock. It sounds like you have an excellent neuro, though, and you are such a strong family. Boo and I are sending lots of love, positivity and additional strength to you.
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Thanks – it was such a shock. We had “prepared” (as much as possible) ourselves for PVL, so when they said tumor we about hit the floor. I know many kiddos, like Boo, who have PVL because of complications from their prematurity. It sucks. Jax’s tumor is hard for me because it has nothing to do with his prematurity! Ugh. Thanks for the positive thoughts!
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He has never given up in the past, can’t see him starting now. Sending a Hug to all of you.
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Thanks, Randy! He is definitely a tough kid! We are so proud of him.
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Damn the universe sometimes. I’m thankful for the good news you received in this bad news situation (does that make sense?). Sending many good thoughts and many prayers!
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Yes – that makes sense. We are grateful that it’s not PVL and that we caught it early. We still don’t want to deal with it, though!! Thanks for the positive thoughts!
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Nor should you have to, that baby and his family has been through enough!
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Wow. I can’t even imagine hearing news like that after everything else you’ve all been through. I’m glad you’re taking some time away from all of this. Breath deeply and clear your mind. It sounds like you have a long road ahead. My thoughts and prayers are with you and your family.
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Thanks, Allison. I’m trying to take it one day at a time and I’m trying not to Google! My mantra is “do not worry until you know what to worry about!” Easier said than done!
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I’m sending your family my prayers. May his tumor be benign and may you be able to start crossing those specialists off your list! God bless you & your family.
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Thank you so much for your kind words and prayers!
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OH no!!! SO sorry I didn’t see this news yesterday!! Thinking of you guys. Bleh. So glad you got the MRI done, but this isn’t what you wanted to see!!!
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Definitely not what we wanted to see! I’m glad there was no indication of PVL, but WTF?! *sigh*
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Ugh! I am so sorry to hear that news. I felt the same way when they told us Bubba probably needed glasses and it, of course, that is not even close to as big a deal as a brain tumor. I just wanted my kid to get a break. To go to the doctor hearing only good news and that they are pleased with how he was progressing. I truly hope it is benign and when they do surgery everything goes smoothly from there.
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Thank you. A lot of my anger/stress comes from the fact that I had let my guard down and started expecting some good news at all of our appointments. And then – WHAM – bad news again. It’s hard to wrap my head around it and get back into “survival mode” again.
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Good Gracious, I am floored. You have all been through enough. To say this is unfair is a supreme understatement. I am wishing you days of comfort and clarity as you figure out the next steps. big huge hugs
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Thanks, Alyssa. Your support means a lot to us.
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Oh Andrea. I’m so sorry. I can’t imagine how angry, terrified, and doubtful you feel right now. I’m sure it’s just a swirl of shitty feelings in your mind and heart. It’s so hard, all of it, watching your child endure so much, so young. Try not to feel abandoned or punished by the universe or whatever your higher power may be. I know that is easier said than done: “The idea of karms is that you continually get the teachings that you need to open your heart. To the degree that you didn’t understand in the past how to stop protecting your soft spot, how to stop armoring your heart, you’re given this gift of teahings in the form of you life, to give you everything you need to open further”. – Pema Chodron. Some of us are just given a lot harder lessons than others, fair or not. : /
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Thanks, Shoshana. I’m done with these lessons now! 😉 My biggest fear is that Jax will stop being happy, either because of a brain surgery that affects his personality, or because of the intense medical things he has to endure. I wish I could protect him from everything, but I can’t protect him from what is growing in his brain. It’s a hopeless and shitty place to be. I’m trying not to feel abandoned, but I’m unsure of how much more we can take, you know?
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Wow. Just…holy friggin crap. I don’t even know what to make of this!!! As if you haven’t already had enough to deal with.
Honestly, I just absolutely cannot even begin to imagine how are you are feeling. If we got news like that from Maddie’s MRI after all of the other stuff…I just don’t even know. My head might actually explode. I’ll be praying every prayer and crossing everything that can be crossed that this will turn out to not be A Thing, but I really hope that you’ll be able to take a bit of a break and regroup, and just go really easy on yourself for a little while before you have to put your Warrior Mama gear back on. I am so sorry you got this news. You guys are in our thoughts.
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Thanks, Alana. My head might have actually exploded! I guess I’m grateful that I have the medical experience and background from Jax’s NICU stay to help us through all of this new stuff. That’s one silver lining, right? (Can you tell I’m trying to talk myself into believing that?! 😉 )
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I think that’s a really good point though! Not necessarily “good” news (it would be much better if you didn’t have to know about ANY of this stuff!!!), but it would probably be even more overwhelming if you didn’t have the knowledge about everything you’ve already been through, and seeing first hand just how much crap you can endure. I wish you didn’t have to, but you can get through this one too.
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WTF! That’s just wrong. As if Jax hasn’t already handled more than enough! So sorry to hear this; but glad that the MRI caught it early. Thinking of all of you!
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Thanks, Heather. We are grateful we caught it early, too. Jax is a fighter – he is strong. But geeze, this is enough!
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WHAT THE F?#@*!!! I am praying for you and Jax and Steve. UN -FRICKEN-believable. I am pissed of at the universe for you!!!!! Take all the time you need and let me know if I can do anything besides pray and swear.
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LOL- Kelley – that’s what I said, too! Thanks for the prayers and the swears – they help!
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The Universe is absolutely not fair. My sister was born deaf, has epilepsy, and is learning disabled. Now as an adult she’s the one who ends up with stage 4 melanoma that keeps coming back. You already know all the issues I have with my son. I’ve had to grieve for the life I wanted to have for my son and somehow deal with an unknown future for him. Although I know our situations are completely different, you grieve every time they tell you something new. You just want so bad to have your kid be healthy and happy. Take your week, take your month, take as much time as you need. And then take it one day at a time. We love you and your family and pray for all of you every day!
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Forgot to post my name!!!
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Thanks, Jen! You get it.
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Andrea, I am sending you and Jax and Steve all positive and healing thoughts I can muster. I agree the universe is being an asshole. I have a good friend whose son just completed leukemia treatments and is now in remission at 4 years old. Please let me know if you would like his contact information. Support systems are key right now for you. I love you guys.
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Thanks, Jenny! That means a lot to us. Wish you were closer so we could have a beer and dance some some jambands. 🙂
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