Aislynn’s Earth

On July 24, 2024, shortly before midnight, everything changed.

“There’s a mass in the back of your daughter’s brain.”

For a moment, time stood still. A million thoughts began racing through my mind, all fighting to get to the forefront of my consciousness first. I don’t remember what, if anything, I said in response. My most distinct memory of those first moments was that I didn’t immediately dissolve into a puddle of tears. Why wasn’t I crying?

I stepped out of the dark ER room we had been sitting in, into the fluorescent hallway lighting and suddenly, time began to move again. The 3 months we had spent fighting for answers, being dismissed and hearing that her symptoms were just innocuous childhood ailments crashed into me. I collapsed onto the floor, sobbing. There were the tears.

It’s been three weeks. Three long, emotional, devastating and exhausting weeks. Yet somehow, the way our life looked on July 23, 2024 feels like yesterday. I still haven’t wrapped my head around the fact that our lives will never look like that again. It feels completely surreal that my creative, sassy, empathetic little girl was so incredibly ill and yet somehow still managed to light up our lives (and the lives of so many other people) every day, while dealing with symptoms that were undoubtably far more significant, painful and disruptive than we realized.

At some point, I will grieve.

Denial was a very short stage. There was never really an opportunity to experience it. Upon receiving the news of Aislynn’s CT scan findings, we were immediately transferred to Mass General and the next 36 hours were a blur of multiple surgeries, new faces and massive amounts of information. When faced with the reality that your child’s life is in very real, very grave danger, denial isn’t a luxury that can be afforded.

Anger. When I allow myself to process some of what I’m feeling these days, this is where I am and it’s likely where I will stay until life begins to return to some semblance of what our new normal will be. At some point, I will feel like my baby is safe enough that I can fall apart and maybe then I will be able to move past the rage. Until then I will be angry that we were dismissed by doctors as many times as we were. I will be angry that I didn’t push harder when I knew something wasn’t right. I will be angry that my little girl is being forced to prove how strong she is. I’ve known she was strong since the day she was born. It’s not fair that she HAS to be so strong though. It’s not fair that she HAS to be brave. It’s not fair that she HAS to be tough. Those choices have been taken away from her and I am so. incredibly. angry.

When I eventually move past anger, I will grieve for what I thought life would look like. I will grieve for the time my daughter suffered before someone listened and even more for the immense suffering she has and will endure now that we have some answers. I will grieve for the time I’m missing with my son – Aislynn needs all of me right now, and while he is amazingly understanding and supportive, it’s not fair that his mom can’t be there for him in the same way right now. There are experiences he and I will never have and I won’t be able to get them back and I will grieve for those missed moments. When I am sure that my family is safe, the grief will come.

I can’t change the hand we’ve been dealt. I can’t change the fact that protecting her, for the foreseeable future, is going to mean making decisions that are scary to her, painful and uncomfortable for her and probably won’t feel (to her) like I am truly protecting her. I can’t change the fact that my daughter has a rare, malignant brain tumor that has forever altered the trajectory of my entire family’s lives.

Right now, I can’t feel all of the things I want or need to feel. If I do, I will fall apart and Aislynn needs me too much right now. So instead, I need to find something productive to do with the noise in my head. All I can do is acknowledge the reality of the situation and in doing that, I can choose how to move forward (for now).

I want to share Aislynn’s story – OUR story.

I want to make sure that every single medical professional that I can possibly reach hears Aislynn’s story. I want them to take her story into work with them every single day, in the back of their minds. And maybe, if they become aware of an internal, preconceived notion about what a diagnosis may or may not be, they will remember Aislynn’s story and take a moment to look at their patient and their symptoms through a different lens, just to be safe. For medical professionals who work with children specifically, I want Aislynn’s story to be a reminder that they absolutely have the extensive medical knowledge that most parents don’t have – But the parent(s) have an immeasurable knowledge of their child and that is arguably MORE important and MORE relevant than what can be found in a textbook.

I want to reach as many parents and as many people as possible. Hopefully most will never have to grapple with a diagnosis as devastating as brain cancer – That doesn’t mean that what can be learned from Aislynn’s story is any less important or relevant.

The last few weeks have proven to me, beyond a shadow of a doubt, that parental intuition is a very real thing. Time and time again, I have disagreed with what I was being told by a doctor and (so far) I’ve been right every single time. I can’t explain it beyond the cliche that “a parent knows their child better than anyone.” And I would posit that the same applies to an individual about themselves – No one knows YOU better than YOU.

If one doctor reads Aislynn’s story and takes a second look at a patient’s symptoms. Or if one parent feels empowered to push back when their concerns are being dismissed. Or if one person gets a second opinion because they KNOW something isn’t right. Then at least some good will have come from the darkness I’m currently sitting with.

I have SO much to share. But for now, it’s almost 2am and I need to get some sleep because my girl is going to need me in a few hours. So I’ll start by sharing this:

Aislynn’s Earth.

Aislynn loves foxes. They are her favorite animal and she has quickly garnered a reputation as the fox girl among the staff throughout MGH’s various departments and affiliates that we have been working with. When I was trying to think of what I wanted to call this collection of stories, I knew that I wanted her love of foxes to be a part of it. As I started to do some reading to come up with ideas, I learned that a group of foxes that share a familial bond is called an “earth” and it just worked. Aislynn has been a fierce, sassy, independent girl since the moment she was born and anyone who has heard me talk about her has heard me say that I have no doubt she will change the world some day – There’s just something about her.

And so, it’s Aislynn’s Earth. We’re all just living on it.