16/12/2025
Update
We had another zoom neurosurgery appointment for Amelia, and I want to share where things actually stand.
And the truth is: no matter which way you look at this, it’s terrifying.
Eventually, surgery will have to happen.
And when it does, it’s one of the most dangerous brain surgeries known. It’s deep in the very centre of her brain, surrounded by critical veins and structures, so complex that many highly skilled neurosurgeons worldwide would avoid it. This is not a standard operation.
The neurosurgeon was very clear. This isn’t about skill or experience, he can and will do the operation. He’s trained for it. But at this point in time, operating now carries a real risk of death, or major complications so surgery at this stage is more likely to worsen her symptoms than improve them.
He also acknowledged something very human.
He said his one regret was not being able to remove all of the tumour during the original surgery, but at the time, they didn’t know exactly what it was, and pushing further could have caused catastrophic bleeding. Knowing what they know now doesn’t change what was safest then.
He explained the current situation with an analogy that actually made sense:
Trying to remove it now would be like trying to pull a flower out of the ground by digging up all the surrounding soil. You destroy everything around it just to reach the roots. Sometimes, the safer option is to let the flower grow a little, so it pushes important structures aside and can be removed more safely, without devastating damage.
The surgeon also made it very clear just how high-risk this surgery is “a fairly risky proposition in anyone’s hands.” Amelia said afterward that he seemed worried, and honestly, the thought that she could not wake up from anesthesia is terrifying. Hearing him talk about the serious risks, including the possibility of death, I have no words to explain how I feel after hearing those words. 💔
That’s where we are.
This doesn’t mean surgery is off the table. It means timing matters.
The plan is another MRI in February. At that point, if the anatomy allows, he will start talking seriously about surgery and creating a carefully planned approach, rather than being forced into an emergency situation.
In the meantime, Amelia is dealing with a lot:
• Severe memory and cognitive issues
• Speech and word-finding difficulties
• Headaches and eye pain
• Sleep onset issues and disruption
• Visual misperceptions
• Being easily startled
• Tics
She looks okay. Most people wouldn’t know. But day to day, this is hard, and it affects everything, learning, confidence, and just being a kid.
One of the most frustrating parts is that although Amelia’s symptoms look and feel very much like an acquired brain injury, she doesn’t fit ACC’s criteria. Because this wasn’t caused by a single accident, there are huge gaps in support and funding, even though she has the same cognitive and functional struggles. Kids like her fall through the cracks, and families are left trying to patch together help that technically “doesn’t exist.”
There is no simple fix right now. What we do have is close monitoring, another MRI scheduled for February 2026, PTEN genetic testing underway, and referrals being made to see if any cognitive rehabilitation support is possible.
This is a waiting space, and it’s uncomfortable, exhausting, and scary, but it’s also deliberate. The goal is to keep Amelia safe while planning carefully, until surgery is possible in the safest way.
This is where we’re at. 🫶🏻✨
