Same-Same But Different

We left our appointment yesterday feeling better than we have throughout this whole process. We loved the team approach at Children’s – we got to talk with the neurosurgeon and the neuro-oncologist together at the same time. It was great being able to listen to them bounce ideas off of each other.

They recommended that we wait to do another scan to monitor the tumor. This is comforting – we really wanted their recommendation to match the other neurosurgeon’s recommendation! Now we are much more confident that we are doing the right thing.

Both doctors explained the reasons behind waiting and answered our questions thoroughly.

They even had a staff person come and take Jax out of the room to play while we talked! It was so great to have that kind of family-centered care.

I’m exhausted today. I don’t think I really realized how stressed out I was about this appointment! For some reason, I was more anxious about this one than I have been about any of Jax’s appointments – ever. I think mostly because no one had ever addressed the symptoms Jax was showing to warrant the referral for the MRI in the first place. It was almost as if everyone forgot about those symptoms (toe-walking, increased tone and clonus with the left foot, and the droopy eyelid and smaller pupil) when we found the tumor.

I was convinced they would tell us the tumor was indeed causing all of those symptoms and that Jax would need brain surgery to remove the tumor immediately.

That’s not the case. In fact, they said they could not find any correlation between the tumor and the symptoms. So…umm….then why is he having those symptoms!?

This neurologist is the first doctor to try to find an answer. He added a spinal column MRI to the order. He is looking for something called a tethered spinal cord. He thinks that might be what is causing Jax’s symptoms. I don’t know anything about this yet! It’s another thing to add to our worry-list, but at least he’s trying to find a solution! We appreciate that.

Here are the highlights from the appointment:

1. Jax will get a brain and spinal cord MRI on April 1. The brain one is to check on the tumor and the spinal cord one is to check for a tethered spinal cord.
2. They are concerned that the tumor has changed in characteristics. We thought it was a good thing that the tumor stopped glowing when they injected the contrast dye. That is not necessarily the case. If I understood them correctly, some low-grade tumors go through active and inactive stages. Just because it’s not glowing now, does not mean it will not start glowing again.
3. One major characteristic of the low-grade glioma called Juvenile Pilocytic Astrocytoma is that it glows under contrast. Since it is not glowing under contrast any more, it might actually be a different kind of tumor!
4. Jax will “probably” (their words) need treatment. Surgery is the preferred option (rather than chemo or radiation). Jax’s tumor is a candidate for the MRI-guided laser ablation procedure called Visualase. But, Children’s has never completed this procedure on a tumor like Jax’s before. Nothing like paving the way! The risks are much more moderate than a full craniotomy, so even though it’s a new technology, we are very open to considering this option.
5. We will definitely be switching to Children’s to continue monitoring the tumor and for treatment when it’s necessary. We think it’s a much better fit for our situation now.

So, even though we are still “watching and waiting” and we don’t really know what kind of tumor Jax has and we added another complex diagnosis to the “what if” pile, we feel like we’re headed in the right direction and we feel better about that than we did before.