It never doesn’t take a village: an Ava update

The expression, “It takes a village to raise a child” is incomplete. The thing is, as we go through life, it never doesn’t take a village. The more I have opened myself up, welcomed friendships, been with family, worked at the church–there is never an age we don’t need a village around us. We lose people we love, we go through illnesses, life gives us things we don’t expect and aren’t ready for, and we need people. And we can be there for people.

One of the places I have seen that most clearly in my life is with our daughter Ava. I have written about her story here and there (this Tidewater Times story is maybe the best summary), Ava developing epilepsy at age 10 after brain swelling has become a defining part of her life in a way no one wants.

The village around us has included people from the Oxford Community Center and Oxford Fire Department, people from Christ Church Easton, people from Caroline and Talbot County Schools, family, friends, churches, social media, prayer lists, and goes further than I came name or be grateful enough for.

As we enter into a next phase of Ava’s care and world, I want to give an update and background for those newer to the village.

Since 2014, a range of medications have not been able to control her seizures in a way that doctors, Ava, or any of us are good with. But since moving her care to Nemours A.I. DuPont Hospital a few years back, there has been progress and some hope.

Late this past fall, we found out that Ava is a strong candidate for epilepsy ( resective brain) surgery. It comes down to what part of her brain is causing her seizures and what other cognitive functions that part of the brain is responsible for. After a number of tests, it seems likely that the seizures are coming from her left temporal lobe. They were originally worried that they were coming from her frontal lobe, which would have ruled out surgery.

The goal is for her not to have seizures any more, or total seizure freedom as the neurologists like to say. Given Ava’s case and how things have progressed, resective surgery is the best chance for her not to have any more seizures. But there are other options if that isn’t a possibility. Her neurosurgeon told us that from where Ava is right now based on test results, studies, etc., 95 percent of patients have some form of surgery available to them.

In December and January she had a contrast MRI and an angiogram, both of which are to help map where important things are so that on January 30 they can do a “stereotactic implantation of depth electrodes” to then do a long-term monitor of her seizures. Simply put, they are going to drill small holes through her skull and put monitors on her brain, then pull back her medicine and watch her having seizures.

Her neurosurgeon gave a solid analogy: when they monitor seizures on the outside of her skull, it’s like listening to a conversation through a wall; they need to step into the same room to really hear what’s being said. Because they need to know exactly where her seizures are happening and what part of her brain it is to know whether they can remove it.

This is incredibly exciting and hopeful news. It is not experimental surgery, it is something neurologists have been doing and feel is her best chance to live without seizures. And we know a young man in our community who has had the surgery and has been seizure free and thriving since.

It’s also a lot to take in, process, and sit with, both as a parent and for Ava. Excited, hopeful, nervous, and scared are all words that are tossed around regularly.

For Ava’s part, she is a rock star. She knows what she wants and she sits through medical procedures like she is eating lunch. This past year, a tattoo artist friend was ready to do a big cherry blossom tattoo on her shoulder. He asked how she did with pain/needles. She didn’t flinch or seem at all bothered through two-plus hours of drawing, coloring, and shading.

As a parent, and as a family, there are small things that make you sad. We will be in the hospital for Anna’s 21st birthday, and depending on how long they keep her (one to two weeks), Ava may be in the hospital for her 18th birthday.

If she is a candidate for resective surgery, recovery would be three to six months. Ava is scheduled to graduate from high school in the spring and is especially looking forward to senior week after graduation. So surgery would be in the middle of the summer.

But one procedure at a time, one day at a time. January 30 and the stereotactic testing is coming up. Before that, and before having to be in the hospital for two weeks, both Ava and Anna will try skiing for the first time. There are experiences to be had and memories to be made every day.

“Thank you” isn’t enough for all the love, all the prayers, all the reaching out, all the positive energy, all the good vibes and thoughts, that have come from so many people. I am, we are, so grateful.

At no point in life does it ever not take a village surrounding any of us to get us through.