Tag: seizures

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.

Companions on the way

If we’re lucky, we don’t do life alone. We have help. On his livestream sermon this week, Fr. Charlie Barton talked about having “companions on the way.” That feels like the right way to think about this past week.

Last Sunday, while in church, I got calls from my cousin and my sister, back to back. Something didn’t seem right, so I stepped outside. Our parents’ house was on fire. My mom made it out and so did her dogs. That was the report I heard before running to my car and driving to Oxford. I learned on the drive that my father was at work.

When I got there, firefighters from Oxford, Trappe, and Easton were actively fighting the fire, neighbors and friends were up and down the street, everyone seeing how they could help. The kitchen and living room were gone, smoke had been pouring out of the house; firefighters had to cut a hole in the roof to fight the fire which had spread into the attic. The cats did not survive the fire.

It was and is surreal. My parents bought that house in the late 1960s, it’s where my sister and I grew up, and all of our family memories have been, and everything my parents own. Displaced doesn’t begin to describe what they are going through.

And all this is the first part of companions on the way. From the firefighters, to the auxiliary, to concerned neighbors and friends, to people at Christ Church reaching out, showing up, bringing food, asking how to help; insurance companies helping with the process of next steps; real estate agents helping them to find a place to live for the the next year–it’s been companions on the way.

The view from the 12th floor at Johns Hopkins Hospital. Hope shining through clouds.

On Monday it was neurosurgery at Johns Hopkins Hospital. For the past few months, Holly has been struggling with Chiari Malformation, where the back of the brain blocks the spinal column. There were maybe three good days in 60+, taking someone who has been in great health and hitting her with vertigo, dizziness, skull-splitting headaches, nausea, no energy, not being able to drive at times. Surgery was the clear answer.

Companions on the way, part two. From family, to work, to friends, to prayer teams, to surgeons, doctors, nurses and medical staff, people showed up, and are showing up, to help, to pray, to bring food, to do what they can. We brought Holly home on Wednesday after a successful surgery, and recovery is underway.

A group of more than 100 bikers rolled up to A.I. DuPont on Saturday morning to drop off toys for kids in the hospital.

Part three. On Thursday, Ava and I made our way to A.I. DuPont Children’s Hospital in Wilmington. Her medicine has not been controlling her seizures this spring/summer and they wanted to keep her for an overnight EEG to monitor what is going on. As we checked in, we met a nurse practitioner who has worked in Easton and who has mutual friends. Talking to her and the neurologist on call this weekend, who is a specialist in pediatric epilepsy, someone who we had hoped to see but who has been scheduled too far out, they quickly asked if we could stay longer so they could cut back her medicine and work with some of her triggers so that they are more likely to be able capture some of her seizures to figure out the best course of action for her–whether surgery or different medications, or what.

So we find ourselves with a longer-than-anticipated stay at A.I. DuPont. We’ve watched the first Harry Potter movie and James Gunn’s new Suicide Squad (thank you HBO Max); Ava has beaten me multiple times at Connect 4 and I partially redeemed myself at Scrabble. She has a mummy headwrap on and the doctor said her EEGs are showing “sparks” (the conditions for/beginning of seizures) all over the place, much more than when we got here. So we wait, and oddly hope for seizures, knowing she is in good hands and that they can give the doctors here information that could hugely help her moving forward.

So that’s Sunday to Sunday this week. At every turn and at every corner, companions on the way have stepped up and made their presence known. Family, friends, and co-workers check in.

And I am carried by gratitude: for my parents both being okay after a devastating fire and for their finding a way forward to what is next; for Holly being able to have surgery to come back to herself and be healthy; for Ava being in great care and now on the radar screens of incredible doctors who have met her, are beginning to know her, and be personally involved in her case.

And for far too many companions on the way for me to name here. I feel frustrated for not being able to be in multiple places, this week especially, but can’t thank enough everyone who is there and helping.

Mountaintop Experiences

Sometimes hospitals can be mountaintops. Mountaintop experiences are those moments or experiences in our lives that rearrange things, change our hearts, bring us closer to God.

Two years ago today, while visiting her mom’s family in Pennsylvania, Ava had a seizure that led her to be flown by helicopter to Children’s Hospital in Pittsburgh. I was sitting in my sun room at home at 9pm, and got a phone call, and was on the road within a few minutes.

She spent 10 days in pediatric intensive care and all told about a month in the hospital between neurology and the rehab unit. After EKGs and MRIs and who knows what other acronyms, the likely diagnosis was that Epstein-Barr Virus had gotten into her spine, and caused her brain to swell and provoked that and subsequent and ongoing seizures. The doctors, nurses, and technicians at Children’s were rock stars, stayed the course and sent Ava home to conquer 5th grade. Since then, she has been on medication to manage her seizures and we have learned a bit about the world of provoked epilepsy. Ava’s has been a good story, with her making honor roll at school, playing sports, and living a mostly normal life, albeit mornings and evenings feeling like a pharmacy.

Mountaintops are what you make of them. The main thing I remember is the amazing support, prayers, good vibes and good deeds from so many people. It redefined what community meant to me. What Ava went through, and her attitude, and watching her come back to herself gave me a sense of gratitude I wouldn’t have come to any other way. It showed me first-hand, the way a community of people praying can change the heart(s) of the people being prayed for. I have been in a constant and growing conversation with God since (not that I always listen the first time or catch what He’s saying).

Yesterday’s Gospel reading and sermon at Christ Church Easton were about a mountaintop experience–Luke’s story of Peter, John, and James witnessing Jesus’s transfiguration, “And while he was praying, the appearance of his face changed, and his clothes became dazzling white.”(Luke 9:29). You can’t get much more mountaintop than that. I like how Frederick Buechner brings transfiguration back to everyday life:

“Even with us something like that happens once in a while. The face of a man walking his child in the park, of a woman picking peas in the garden, of sometimes even the unlikeliest person listening to a concert, say, or standing barefoot in the sand watching the waves roll in, or just having a beer at a Saturday baseball game in July. Every once and so often, something so touching, so incandescent, so alive transfigures the human face that it’s almost beyond bearing.”

When I think back to two years ago in the hospital and getting home, I have seen that look on a face. It was there in Anna caring for her sister; it was there in Ava getting home, excited to see her friends and start the school year. And because of that mountaintop experience, when I remember to look with the eyes of my heart, I see it now.