Summer of 2015

The good news is that Sasha was accepted at UNC Chapel Hill for college – his “dream school.”

The bad news is that at the end of June, after 18 months without serious problems, Sasha began to have some encephalitis symptoms. He had taken 2 days of summer classes at UNC, was making plans for moving on campus, and his life seemed pretty hopeful. It is now August, and Sasha has been stuck at home, sick, the entire summer. He did not have the kind of acute attack that lands him in the hospital – but neither does he yet have the cognitive focus to do homework, attend classes, etc.

The final freshman orientation period for UNC is in two weeks – he has already rescheduled twice, and time is running out to be able to begin college this Fall. A painful reality, although we have not given up hope. He has received three rounds of Cytoxan and multiple ivig treatments this summer, and as of August 2 is as well as he’s been since June – but not 100%.

I remind him that UNC has been around since 1789, so it will certainly still be there if he needs to start in January 2016. But you are only 20 once, and the weeks seem very long.

-Daniel

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Lanakila 2014…so far

   

Perseverance and a sense of accomplishment

While this past year has had its share of ups and downs, reflecting on 2013-2014 so far has mostly felt ok. I had a flare of my disease for about seven weeks in November and December, but thankfully I was able to stay out of the hospital. This year I have accomplished a lot and grown as a person. I have graduated high school and I am excited to be able to work at Lanakila for the summer. This past school year, I have balanced treatments, a brutal chemistry course, and even have gotten healthier. While the road has been longer than anticipated, I have made it through high school in five years despite missing the entire 2011-2012 school year. While I have a rare and strange disease, I am not letting it dictate my life. I feel like I have learned to deal with adversity and how to manage challenges I face. Currently, I feel like I have a better understanding and acceptance of my illness than ever before. Thanks to the support from family, friends and others I have managed to achieve my goal of graduating. While some times the burden feels heavy, I know that I can fight back against the disease. Without refusing to take no for an answer and never giving up, I feel proud to be able to write this post today. 

Graduation and a Tornado

The Hill Center Senior Graduation Dinner was scheduled for 6:30 pm on Thursday May 15, at the Hope Valley Country Club. It is intended to be a semi-formal jacket-and-tie affair for students, their parents, and their teachers.

Sasha looked particularly handsome as we climbed into my truck for the 15-minute drive. If you haven’t seen Sasha in a while, he has recovered his former strength and conditioning through intense physical training, and has lost 47 pounds since February 2012. He even smiles now and then. Recent tests confirm that his heart, lungs and bone marrow have suffered no permanent ill effects to date from years of intensive chemotherapy. He currently has no symptoms of disease. He is scheduled to begin work as a Counselor June 16 at Camp Lanakila in Vermont – his dream job.

And Sasha is graduating not only from the Hill Center program (four years of three classes each day – English, Spanish, and Mathematics) but from High School as well.

 Sasha has spent more than 12 months in the hospital since January 2009. During the 2010-11 school year, he missed more than 50 days of school for hospital-based chemotherapy and tests. And he was unable to do any academic work at all – in fact lost the ability to read – during the major crisis from August 2011 to February 2012.

That Sasha is graduating from high school after only five years speaks to his extraordinary will, tenacity, resilience, and courageous determination to fight his way back to normal life.

Meeting his very last High School requirement – a Physical Science with Lab – turned out to be the toughest. He took a college level Introductory Chemistry course at Durham Tech. Overwhelmed students continually dropped the course, so as enrollment fell from more than 20 down to 8, Sasha’s lab partners melted away, and in the end he was reduced to doing his final lab as a team of one. It was stressful and a source of continual worry, but throughout it all he maintained an A average.

All this was running through my mind about ten minutes into our drive down Hope Valley Road, when, as we approached the corner of Hope Valley and Martin Luther King Boulevard, Sasha’s phone alarm went off — a tornado warning. If you’ve ever seen tornado clouds, you know that they are distinguished, even in the absence of a funnel, by their strange color. I looked up and said, “Yes, that’s the exact shade of green you see only in tornados.” At that moment the air became full of flying debris. The banging was incredibly loud as pieces of wood from shredded trees struck the truck. I pulled over and stopped. A large tree about one hundred feet ahead of us flew sideways into the road and sliced through all four electric lines on a pole next to it, and a live wire arced in spectacular fashion to the ground, sending sparks into the air like a welders torch. The wind was not coming from any particular direction but from many at once, strong enough to bounce our big truck from side-to-side. Helen screamed in the back seat. Sasha, in front, remained calm and kneeled under the dashboard. Then there was a blinding flash of white light directly in front of us as a transformer exploded. Then it was over. The air lightened and the winds were calm. The whole episode had lasted 20 or 30 seconds at most.

Trees limbs blocked the right lane of Hope Valley Road. We had just been in a tornado. (The National Weather Service later confirmed that an F1 tornado touched down at the corner of Hope Valley Road and Martin Luther King Boulevard). So then the question was: Do we go home, and miss the dinner, or drive on, over the fallen wires and broken branches, past the cars with roofs smashed in and windows blown out, and go to the Country Club for dinner?

After a minute to take our own pulse, we called home, where the rest of the family (including our new puppy already named Tornado) were sheltering safely in the basement. We decided to drive on. When we arrived at the Country Club, the power was of course out (the exploded transformer), and the Club had no backup generator. The Hill Center families who had arrived before the tornado were sheltering in a gloomy sub-basement. Eventually we all moved upstairs to eat, as the food had already been prepared, but the power never did come back on. We ate dinner in near total darkness, a few candles on each table providing enough light to distinguish salad from chicken from cake, etc. Overall, the event was more fun than I had originally expected.

On the drive home I thought about what an obvious metaphor this all was. We were in the eye of the tornado. We saw and heard things few others experience. Then we carried on as if nothing were out of the ordinary. The other guests talked about the tornado vaguely, as something far away.

Portraits of Sasha 2010 to 2014

Launching a Working Group

Leslie and Will and Susannah and Helen and I (with invaluable help from Elisabeth and many many other people) organized an AE Alliance event this past week. We brought about 25 of the world’s top research scientists and clinicians in the autoimmune encephalitis area to Durham for two days of facilitated private conversation. Our invitees  traveled from the Netherlands, the U.K., Australia, Canada and all over the U.S. Many participants also gave Grand Rounds or other talks at Duke, as part of what we called Duke Autoimmune Encephalitis Awareness Week. But the core purpose of the gathering was to form an International Working Group. This Working Group will collectively write authoritative documents on differential diagnosis and treatment — documents that will be of value to clinicians at every level of the health care system. Working Group collaborations on case reporting can improve standardization of diagnostic assays, identify best practices for dosing with current medications, and offer much else of immediate value to AE patients in the short term. In the longer term a coordinated international network can, in collaboration with families, spur greater access to funding for prospective clinical trials of current and future treatments. And it all helps create a culture of urgency in which the ultimate aim – a cure – and the sense of shared goals helps motivate the difficult work.

Our “new” Duke medical team from 2011 to the present were represented of course, but it was especially joyful for me to see people directly involved as Sasha’s Doctors in 2009-10 – including Dr Patterson and Dr. McKeon from the Mayo Clinic, and Dr. Mikati at Duke – under much happier personal circumstances.

Many of the participants spoke privately about the present state of this still-rarely diagnosed disease in terms of isolation and loneliness – not only for patients and their families, but for  themselves as well. They are making difficult decisions in a high risk environment with few peers  who understand what they are facing or doing. But along with that is a sense of excitement and potentiality – “loftiness” was the word one person used. And the future was spoken of as a time of forging new connections, making new discoveries, and finding some joy.  Awesome.

 

Collaboration Map of AE Working Group Members and others

 

 

 

Analog Holidays

Analog was the theme this year. Everyone got what they wanted. Sasha got his own recurve bow. Oliver got a record player. Leo asked for, and received, pads of drawing paper, and clay. Really; those were his top two wishes.

Rebecca asked for a letter press. After some research we were able to find a restored Kelsey 3″x5″ press – the Excelsior model, originally made between 1885 and 1929. The same as my mother’s.  It even came with the same font – Garamond 12 point.

The only gift any of us really needed was for Sasha to get better. The day before Christmas he was suddenly, after gradual improvement over several weeks, completely himself. Like an old-fashioned camera lens that you twist to focus, until suddenly the confused blur becomes a razor sharp reality.

Thank You

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.

 

 

Flare

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.

Travel in the Mountains

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