Juvenile Pilocytic Astrocytoma Brain Tumor and the Waiting Game

Jax’s brain tumor has a name: Juvenile pilocytic astrocytoma (JPA). This type of grade I astrocytoma typically does not spread. JPAs are considered the “most benign” (noncancerous) of all the astrocytomas. Hallelujah!

juvenile pilocytic astrocytoma MRI brain scan
Juvenile Pilocytic Astrocytoma in Jax’s brain

JPAs do one of three things: shrink, stay the same size, or grow. Let’s all root for a shrinking tumor, ok?!

JPA tumors account for only about 2% of all brain tumors; they are rare.

The neuro-oncologist we met today has seen 100 kids with this type of tumor. Two-thirds of the kids he has seen never require treatment because the tumor does not grow or cause neurological problems. The other 1/3 of kids with JPAs require surgery to remove the tumor.

Usually, surgery is the only treatment necessary to remove the tumor, but chemotherapy is a possibility if they are unable to remove the entire tumor.

One of the most comforting things we learned today is that this Grade I tumor will most likely never turn into a Grade II, III, or IV tumor. That means it most likely will not infiltrate his brain or become more aggressive.

However, that being said, the tumor could grow larger.

So, Jax will have another MRI in October to check for any signs of growth. If there are no changes, he will go in for another scan in six months. At that point, and if there are no signs of concern, we would move to yearly MRIs to monitor the tumor.

It truly is a waiting game.

I’m am, of course, SO relieved to know the tumor is benign and has an excellent prognosis.

But, it is still a brain tumor. The location of the tumor is very dangerous. It is considered “benign by pathology, but malignant by location.” If there is any change, even a millimeter, Jax will need brain surgery. While I am thankful that we have the option to wait and see, the stress of “what could be” is very difficult to deal with.

The neuro-oncologist is fairly certain that the tumor is causing the issues with Jax’s left foot. The tumor, not Jax’s prematurity, seems to be the root cause of Jax’s increased tone and clonus and is what is causing him to need the ankle-foot orthotic.

This will be something that Jax will have to deal with forever. It will always be a diagnosis on his medical chart. His therapists and I will be on high-alert monitoring his development and watching for changes in his neurological symptoms.

My hope is that the tumor never changes, or even better, that it shrinks and disappears!! I will do my best to curb my worry as we wait for the next scan. The scanxiety will be a challenge for me, but I will find strategies to cope with the “what-if” worry that will inevitably come with every subsequent scan.

It will be a relief and so much easier when he gets to an age where he doesn’t require anesthesia for the scans!

When Jax was born at 23 week gestation, he was given only a 4% chance of healthy survival. But our tiny fighter laughed in the face of those statistics and thrived.

Jax has done it again, gang. We heard the words “brain tumor” and for all intents and purposes, we got the best news that could have accompanied the diagnosis.

POW! Jax, you sure know how to beat the odds, kid. (But, your mama and daddy would appreciate it if you stopped needing to defy the odds!)

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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.

34 thoughts on “Juvenile Pilocytic Astrocytoma Brain Tumor and the Waiting Game”

  1. Andrea – my granddaughter is 3.5 years old. She has delayed speech and ADHD. We thought that was it – until a massive tumor was found in her brain stem (pilocytic-astrocytoma). We are curious of much of her syomptoms of autism were due to the tumor. SHe underwent brain surgery yesterday.

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  17. What wonderful news, all things considered. But you are so right, it’s still a brain tumor, and that’s still bull****. Your son is amazing, but he sure does need to let up on his parents a bit! 😉

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    1. LOL – we joke that we loved Jax’s “fiestyness” in the NICU and his strength now in dealing with all kinds of new doctors – but we might not love it when he’s a teenager! 😉

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    1. Andrea and Steve, I am glad that you received the best case scenario news at this point. There truly is something special about your son. He has pretty amazing parents too. I hope you are doing some things to take care of you, too. We send our love. Kara and Andrew

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  19. Andrea that is great news! We will be praying the tumor shrinks and all will be well for Jax! Hope to see you both again this Fall at our class!

    Love – Melissa and Maddie

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  20. Andrea and Steve, like a great man once said; “Don’t worry about a thing cause every little thing is going to be alright!” We are all praying for shrinkage 🙂

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    1. LOL – that’s right – Mr. Marley knew what he was talking about. We are hopeful that there is no growth on the next scan and that we can continue to “watch and wait!”

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  21. POW! Indeed! Yes! I’m not going to lie, it still sucks beyond belief that your family has to deal with this now and that you have ANOTHER specialist on board. It is not something you want to add to the plate BUT it is the best case scenario given the circumstances. I am so, so happy and relieved for you all. Go Jax!!!!!

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    1. The “watch and wait” approach is definitely the best case scenario right now – we are thankful that is an option for us! *sigh* time to get another binder for paperwork!! 😉

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  22. Andrea, I am thrilled to hear this news! I will continue sending you love and laughter and praying for that little tumor to hit the road!!!! Much love to you!!

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  24. Jax is going to be the calmest, easiest teenager ever someday. After everything he has been through and put you through, you deserve an easy ride!!! I say that about my boys too, their early arrival gave me enough worry to last a lifetime, they owe me!

    SO GLAD to hear this “good” diagnosis.

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