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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