Archives for category: Uncategorized

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

google4040f81d85ff2132.html

Advertisements

 IMG_3750 IMG_3927IMG_3951  IMG_3867 IMG_3870IMG_3900

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. 

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.

0_Zoo_2010 1_Eno River 2_Dusk_Bridal_Cove_2506 3_Versailles_Wedding_2780 4_Paris_Rooftop_2760 5_Archery1_3337 6_Archery2_3243 7_Leo's_Big_Brother_3333 8_Ice_Cream_2997

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

Collaboration Map of AE Working Group Members and others

 

 

 

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.