Someone in my extended family read that Sasha’s illness flared up, and within a day they gave $1,000 through the Autoimmune Encephalitis Alliance web site.

I appreciate that type of response as both generous and insightful.  It is exactly what we want and need.

The AE Alliance is our instrument to transform grief, feelings of helplessness and powerlessness, and even occasional despair born of exhaustion, into connection with other people, intellectual engagement with the science of this disease, and productive work  creating and disseminating new knowledge. Helping the Alliance is helping us.

Even as we manage the round-the-clock care Sasha needs right now to stay out of the hospital, Helen is discussing with Duke colleagues new research that will include analysis of genetics associated with AE, and I am exploring a data-mining project that will map the typical time-course of response and recovery associated with ig treatment using quality of life measures. Will and Leslie McDow are a whirlwind of activity, organizing the FlorenceForth run for March 1 (Florenceforth.org) – which this year has a donate and sleep in option! – setting up logistics for our scientific symposium, and too many other things to count. And Susannah Cahalan just gave a TEDx talk (IMO the pinnacle of cool) that includes a link to Aealliance.org.  Our wonderful documentary filmmakers brought us a loaf of delicious homemade banana bread – but what I want even more  is a sequel!

About that symposium — many of the world’s most eminent and productive AE researchers, including leading scientists from the U.S., Europe, and Australia, have already agreed to gather in Durham at our invitation in March of 2014.  As far as I know, this is the first international scientific meeting devoted specifically to the interdisciplinary study of autoimmune encephalitis. I hope and anticipate that when published, the symposium Proceedings will have a significant impact on diagnosis and treatment of AE – and will help motivate more focused clinical research on key aspects of the illness.

 

Events like this cost money – but it is highly efficient expenditure.

 

An old friend of mine from school – I think it had been 20+ years since we had last talked – saw my bio on the AE web site and contacted me a few days ago about the sick child of a friend. I was thankful that he could find me so easily – thankful that the web site worked so well – thankful that I could offer someone else something relevant from my own experience.

Feelings of thankfulness seem to trump exhaustion, disappointment, and discouragement. They have deeper roots and a longer half-life. So “thank you.” For your gifts to the Alliance, for your love and support, for the prayers that so many of you have offered up for Sasha these past three weeks.

 

 

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Something much worse than being well, but much better than being hospitalized. A state of mind that makes it impossible to study, or to sleep without tranquilizers, where feelings come in overwhelming and unfiltered waves, and one’s powers of concentration are dispossessed. Where one’s thoughts are recognizably not one’s own – but come from the “itis.” A restlessness that is soothed by sweeping, folding laundry, raking leaves. A place of moderate chaos that is not so very evil in itself – but terrifying because it feels too much like an antechamber to the many lower circles of hell this illness can entail.

What to call it? Not a full “relapse” – to us that means “back in the hospital.” But Sasha is unquestionably no longer “in remission”  either. The clock of Sasha’s freedom from this disease ran from February 2012 to November 2013, and then ran out. As Sasha says, the “embers” in his brain again need cooling. He has been home from school for two weeks – not yet hopeless to complete his fall semester courses – but he is not yet well enough to return to school.

He wants to go to at least one class tomorrow. And today Sasha worked on his application to be an assistant counselor at Lanakila this summer. “I can teach people to never give up.” Embers. A flare. Extra help from generous, tired people. Thanksgiving at home.

Our son Sasha became confused and delirious in the winter of 2009,  within days being unable to eat or sleep. Within less than a week he was suffering from complete disorientation, including terrors that people were coming to kill him. He needed to be watched around the clock. No one knew what was wrong with him, but it was obvious that he was deteriorating. Any parent who has ever stood helpless watch over their sick child knows that it is indescribably painful.  And since that day in 2009 we have been afraid.

This blog brought our immediate family and friends into our experience in a profound way. But at that time, we did not know one person who had ever had autoimmune encephalitis. The diagnosis was essentially unknown at Duke. We learned about the illness along with our doctors. We paid a high price for our ignorance, but over time we became less helpless – because we refused to concede our hopes that this disease could be named, understood, treated, and ultimately cured.

Now, not quite five years later, Sasha continues to get intensive treatment, and every day he is well is a good day. We are tired. But we are no longer in any way isolated by his diagnosis. Helen and I have now talked directly with dozens of families whose children have autoimmune encephalitis, and we’ve heard about hundreds of other cases. Duke is tentatively emerging as a center of excellence for care of children with autoimmune encephalitis. Without any official sanction, new patients now make their way to Duke in a steady stream, sometimes several in a week.

Helen and I met Leslie and Will McDow in the fall of 2012 and together started a non-profit foundation – the Autoimmune Encephalitis Alliance – to spread information and create community. The first running of a race named for the McDow’s daughter Florence, who heartbreakingly did not survive the illness – Florence Forth – brought over 700 people together last March and is a new Annual Event. Our foundation web site, at aealliance.org, is a source of objective information about symptoms, diagnosis and treatment of the disease for families and clinicians. We made a movie that offers a clear call to action for the medical profession. Sasha himself spoke to an audience of over 100 people at an AE Alliance fundraiser/movie  premier in Durham last August.

In amazing synchronicity, the journalist Susannah Cahalan, who herself suffered from autoimmune encephalitis,  last year published a beautiful and best-selling book about her experiences, Brain on Fire, which has brought the disease – and the inadequacies of the medical profession in recognizing and treating it – to the attention of patients and clinicians around the world. We met Susannah and loved her, and she has joined forces with us in building our foundation. Susannah is working tirelessly and relentlessly – but joyfully too – to communicate with readers, doctors, and families, traveling the world to do Grand Rounds at hospitals — including Duke — and to meet with and link up the world’s researchers in this area. When Brain on Fire was chosen by Target as its Book of the Month, they ask Susannah for a new afterword, in which she provides a link to the http://www.aealliance.org resources. So everything is starting to tie together.

One of our fundamental goals in founding the AE alliance is that no family should need to face this illness alone – and we have already made real progress toward this goal.

Even as we have faced other illnesses, and other losses, and feel guilty about the many things we could have done and did not, I would say that we are not confused. We know who we are, and we know where we are going.

Our children too have been shaped by knowledge of their vulnerability that we could not deny. But this summer Sasha had been well enough, for long enough, that I was able to leave him and take my two younger boys. Leo and Oliver, for a climbing and wilderness travel adventure in Iceland, in the region of the Eyjafjallajokull glacier, where the volcano erupted a couple years ago. The ground is still warm in places, and ash covers the hills. It was something real I could offer them. I am in my element  there. I know how to travel mindfully in exposed places. And after coming down out of the snow-covered peaks to the green valley of Thorsmork, Oliver wrote a poem that said it all, I think.

Mountains

My father told me

When we climbed mountains,

“Always stay just a little afraid

To stay safe.”

I knew not to be afraid

Of time, separation, and reality

But just afraid enough

So you know where to step.

-Oliver Egger

In recent weeks, we have for the first time met with a number of other families with a history of struggle against autoimmune encephalitis. Face-to-face is very different than comments on a web site. Like characters in a Russian novel, each facing alone the exigencies of life and fate (can you tell I just finished reading Life and Fate by Vasily Grossman?) we suddenly find our threads cross, and our own story becomes one subplot in a larger epic. Our sense of being alone and unique is replaced with a sense of responsibility toward others who have less. It marks the beginning of a time in our lives when we formulate and execute a plan to change the future experience of those who suffer from this illness.

I’ve got permission to mention two of these connections.

Susannah Cahalan is a reporter who has published a beautiful memoir of her own illness – Brain on Fire. Helen invited her to give Grand Rounds at Duke – an amazing and moving event that took place this past Thursday. Helen’s introduction, in her simultaneous roles as division chief of child psychiatry and as the mother of a patient with the illness, was extraordinary. Susannah read beautifully. In particular,  the way she wove together parallel narratives of her own fractured memories of delirium, an objective account of a video made of her at the time, and the doctor’s distanced and partial report as given in the medical chart, was devastating.

It was great writing. And the doctors speaking at Grand Rounds were in a supporting role, to validate Susannah’s experience. So the event itself modeled the kind of future we imagine.

Susannah’s web site: www.susannahcahalan.com

Will and Leslie McDow have come into our lives definitively now, although, like veterans of Stalingrad in the aforementioned russian novel, our paths had almost, but not quite, crossed before. Sasha and Florence, the McDow’s daughter, were in beds a few rooms apart in the Duke bone marrow unit in December 2011, but we never met.  Florence died March 4, 2012, at the age of six. You can read the whole heartbreaking story here:

cotaforflorencem.com/blog

Together with the McDows, we have organized a not-for-profit foundation, the Autoimmune Encephalitis Alliance (AEA). Its ambitions are not small: to change how patients with auto-immune encephalitis are diagnosed and treated, to support families coping with the disease, and to promote new scientific and clinical research that will lead in time to a cure. AEA’s first public mention just happened – at Duke grand rounds. AEA’s first fundraising event is FlorenceForth: a 10 mile/5k run/walk through downtown Durham, on March 2, 2013.

Sign up for the run here: www.florenceforth.org

We have big plans. We are making a documentary! Who knows what else! Now that the threads have crossed.

Duke Grand Rounds Jan 24 2013 final

Last Summer, Oliver gave a talk at Chapel for the combined Lanakila and Aloha camps. So far as I know, Oliver – who was not yet 11 years old – is the only camper ever to give his own Chapel talk. If you want to know why Lankila, which is a place of traditions, created a new tradition for Oliver – well, all you really need to do is to read Oliver’s talk.

I want to thank Barnes Boffey, who runs Lankila, for giving me and my three boys so much of himself over the past five years. If you want to know what kind of a place Lanakila is, and what values Barnes lives by and inspires others to live by, and why we love him, well — all you really need to do is read Oliver’s talk.

-Daniel Egger

“I am Oliver Egger. Today I would like to talk about this community. Some of you may know my older brother, Sasha Egger. He got sick four months after he first came to Lanakila. I was a first-grader at the time.  The illness was called auto-immune encephalitis. It affected his brain, and every time he thought he was better, he would get sick again. The seventh time landed him in the hospital for six months. The illness hit my family hard. The horrible shock distressed the very grounds of my family. My parents were almost never home, and when they were they were very distant. Do you know what helped us power through what seemed to be an endless hardship? It was people like you. And I don’t mean intensive brain doctors, but the children and adults of my community. If it was a check-in from Barnes, or just our neighbors making ravioli, everyone helped. People made food, and cared for us; family visited and brought gifts. Other prayed and gave thoughts. That really meant the most to me. The most touching story that happened in my community was that while the school year was going on, the teachers and the good friends helped so much. But one night, I was at my house, and my sister was working on some college sheet, then a knock came on the door, and when I answered it, to my surprise, a kid from my school, with food for my family, stood quietly at my step. This touched me so much. This kid was “the man.” Having his care touched my heart. I believe this is how every community should be. I believe Lanakila is that kind of community.  It is a place where people help you finish off your boat landings for your full Loki, or something smaller, like a friend taking you down to the health house for your small cough. Together we make this a community, by not only being supportive during our victories, but also through our sufferings and disappointments. For example, who has been helping me most to achieve my full Loki? Not just the people in the departments. But Reed and Alex, my tent mates. And of course my friends, who tell me I can pass the test, tell me I’m the best. Things like people being encouraging here at camp, and friends and family back home making dinner are almost the same thing. It all feels great. More importantly, I’d like to thank the amazing teachers at camp and doctors at home. I do not know how to end this little piece, so I wrote a small poem for you, me, Lankaila and the world.

 

Sunday Walk

 

As I walk, I dream

Of love shared among the stars

Flowers blooming with love

And as a man weeps, another man weeps more

At the sight of his friend’s tears.

 

Thank You.”

-Oliver Egger

 

With last night’s win by the Redskins over the Cowboys, the NFL’s regular season ended. It was a long 17 weeks,  with replacement refs and the “inaccurate reception” and plenty of ups and downs and chemotherapy and immuno-globulin and strep tests and fevers and false alarms. But through it all, Sasha stayed well. He finished three more high school courses with As. Rebecca, Leo and Oliver flourished; their parents had time to attend their orchestra concerts, and to buy them warm coats before winter, and nice presents like cameras and drum lessons, and in Rebecca’s case, a legitimate beer in a downtown Durham bar.  And Rebecca got hired by a start-up to design their web site, Oliver got a part in the “big kid” musical at Durham School of the Arts, Leo played poker against 25 graduate students in the Duke Finance club and came in second overall.  And Sasha won his fantasy football league, even as his beloved Patriots remain credible contenders for the championship.

But the thing I am so grateful for, made possible by the care and compassion of so many people – doctors, nurses, hospital staff, family, friends, our neighbors and our community of colleagues at Duke – is that we had a season. A regular season. We do not take one game or one play for granted.

-Daniel

When he was first hospitalized, in the spring of 2009, Sasha had two goals he repeated over and over: he needed to get better so he could go back to summer camp at Lanakila, and he wanted to see castles.

 

As you know, against steep odds Sasha did make it back to camp that summer.  Even more amazingly, Sasha spent this past week, together with our whole family, at Ballynahinch Castle in Connemara, Ireland.

 

Sasha rode a horse for the first time, down to the breathtaking beaches near Cleggan and right into the surf. He explored Augnanure Castle with Leo and Oliver, and wanted to know if they really sent the left-handed fighters in first because the stairs ascend clockwise.  He searched for skipping rocks at Rossadilsk, and walked the Diamond Hill trail in Connemara National Park. We drove the Burren coast road, and joined in a medieval-style banquet in Bunratty Castle.

 

Sasha turned seventeen yesterday. Whatever the future holds, he made it to see castles.