Sasha asked me to pick out a scarf that he could give to Helen for her Birthday. He wanted to wrap it himself. I couldn’t find exactly the color he had in mind, but when he looked at what I’d found, a very tender look came over his face, and he said, “Oh, that is beautiful.” A nurse helped us hide the box in the staff room. Sarah brought wrapping paper. When Helen goes over to the hospital in a few minutes, Sasha will give it to her. 

So in spite of all his lingering symptoms, he is at present at the core, and his true personality – gentle, patient, wishing to not trouble others, with a dry sense of humor  and great sensitivity – is re-emerging.

The most hopeful piece of news is what did not happen last week, when he got a cold. In spite of getting hot and clammy and shivery (just as he did on November 25th) and then developing a sore throat and runny nose and feeling generally miserable, mounting an immune response did not lead him to fly into a general unreachable delirium, with sleeplessness, agitation, and irrational behavior.

Instead he just lay face down on his bed, feeling miserable, mumbling loudly, but calm, still responsive to questions and requests. This is strong circumstantial evidence that four rounds of Cytoxan, plus ivig every two weeks, have increased his robustness  in the face of life’s unavoidable immune triggers.

Last weekend the Patriots decisively won their playoff game against the Broncos, and Sasha watched the entire game, alert to every play, even as he mumbled his standard monologue under his breath. In the last 20 minutes, he sat up in his chair watching quietly, not even mumbling – apparently more relaxed than he had been in days – his beloved Patriots were definitely going to win.That brought a broad smile, too.

We are making no changes in his protocols or medicines now – just waiting and hoping that this apparent stability holds. If it does, although he is far too sick to go to school or even to take care of himself normally at home, he may be well enough to go to a brain rehabilitation center or even to come home with some nursing assistance.

Of course, it would help a lot if the Patriots could beat the Ravens this weekend – a much more difficult hurdle than demolishing the over-hyped Broncos. The Ravens are really good. We know our adversary is strong – stronger than we are.  We will need both best efforts and good luck.

 

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There are only so many ways I can describe watching my son’s intellect and mind and sense of self and ability to communicate with the world – his sly smile and dry sense of humor, his mastery of the details of all he cares about – the part of Sasha that is Sasha – the part of any human being that is human – slip out of reach, like a kind of death-in-life, a kind of absolute absence. Each time not knowing whether he ever will come back, or what he will leave behind and return without.

I have carried my computer with me every day to the hospital but never used it. This Monday Sasha suddenly asked me: “Dad, do you have your computer with you? We could watch a Dr. Who or something on Netflix.” He took the computer over and checked the weekend football scores on ESPN himself. He chose the latest Star Trek movie from Netflix, and we watched it, sitting together on his bed. This is the first movie he has been able to watch since August. He was laughing and joking and poking me. Tuesday was the same — as much back to himself as at any time during the last four months. Then Wednesday, the eyes went a little blanker, the numb inarticulate apathy crept back over him, the monologue of delirium got louder. He no longer wanted to throw the football or even to move around. He lay on the bed with lhis eyes half-shut.

Like being with a new made ship as it is launched in hope from its ways, then standing helplessly on shore as it sails off the map, grows small and indistinct, and disappears beneath the horizon.

Like a longed-for reunion with an old love, cancelled at the last moment – you’d already arrived at the train station with your now pathetic bundle of flowers.

So today, instead of further impossible description, I offer up some feelings in the language of the heart, two poems. This is for you Sasha! Though you may not read it for a long while, or ever.

The first poem, WInter Night, is by my best friend Tom Laverack. I do not think it’s relevance requires any explanation. The second poem, The Gift, I wrote for a friend in Germany whose father picked all the cherries from their family tree himself, even well into his eighties, until his wife of more than 60 years died. I gave it to her and she read it to him and now we are sharing it with you.

Winter Night

It’s a winter night
Cold and clear with
The smell of snow
And fireplace smoke.

The stars are witnessing
This oblivion below
As the wind stings my cheek
And my boots crack on the sidewalk.

They are waiting for me
At home, behind a wooden door
Where a clanging radiator and a blanket
Will keep us warm tonight.

We are our own constellation
Similar to billions and yet
Separate and special, alive yet
unsure of the purpose of our light.

If we are afraid of the dark
And the cold air that seeps in,
We will make it bright and warm,
So it is comfortable for a mammal.

There are no greater concerns
Than this, the universe or vast
World that stretches out beyond
For now, stops here at our doorstep.

-Tom Laverack

The Gift

Perhaps elsewhere grow cherries
That drop from the branch in perfect ripeness

In Germany they fall too late.

I will go into the treetops.
I carry my ladder myself.

High above the top of the ladder
The tree limbs stretch on and upwards

The sweetest cherries
Linger near the sun.

This is my church.

I return to earth with baskets of cherries
Enough for sons and daughters, grandchildren too

Baskets of sweet cherries and years of harvest
Decades of work and a lifetime of marriage

Beyond the highest rung of the ladder
In a snowstorm of blossoms

I give you this task.

-Daniel Egger

Case report on Sasha Sasha is one of the two patients described anonymously in a case report in in the journal Pediatric Neurology. His eeg from his 2009 hospitalization is reprinted. This eeg was crucial to his diagnosis as it validated that his psychiatric symptoms were due to encephalitis and not mental illness. Click on the link for pdf of the article.

 

 No dramatic changes since the last blog post. As of today, Sasha is doing relatively well.

 

Sasha is as mentally clear as he has been at any time since he entered the hospital on September 2.  He is not delirious, although he still begins to mumble his monologue under his breath when he gets tired. He is calm. He is sleeping 8-10 hours a day, and, with daily steroids, has a more-then-normal appetite. He took a three mile walk on Thursday, can throw a football with a nice accurate spiral, and yesterday answered correctly when I asked him the cube root of 81 and the smallest prime larger than 27.

 

Family, friends, nurses, sitters and doctors – we all have our fingers crossed. The doctors in particular are pointedly avoiding expressing – or are not feeling – their past optimism. In the last five months, Sasha has three times before been close to or at his current level of lucidity, only to deteriorate rapidly into frantic agitation, constant monologue, delirium near impossible to interrupt.

 

Sasha has already received 4 of 6 planned Cytoxan doses. The hope is that by reducing the number of antibody-producing cells, the whole auto-immune syndrome can be made more tractable. And Sasha has seemed to respond better to ivig treatment recently than he has for five or six months – much of the improvement is in the last two weeks since the most recent ivig dose. He is getting ivig again today.

 

Here is what Sasha cannot do: get dressed or take a shower without help. Read more than a sentence or two at a time. Write. Use a computer or ipod. Listen to music. Play video games. Call his friends. Take an interest in, or even tolerate, television programs – except for football games, which have a familiar rhythm and are somehow more bearable. Some combination of heightened sensitivity and interrupted attention makes all such activities unpleasant and wearisome.

 

If Sasha’s current state is stable and can be maintained at lower doses of sedatives and anti-psychotics, he may well be able to come home. But he will still require 24-hour care, and is a long way from being well enough even for home schooling, never mind what he rely wants, which is to return to the Hill Center and start 10th grade at Voyager, and apply to the School of Science and Math for next year.

 

He asked me sadly last night, “I’m not going to be able to go to the School of Math and Science, am I?”  NCSSM, the wonderful 11th and 12th grade public boarding school Rebecca attended, has long been a dream of Sasha’s. The stamina and focus required seem improbably distant. I’m stressing smaller goals – reducing the amount of sedation needed to maintain equilibrium; switching to out-patient treatment for the remaining Cytoxan doses;  coming back home to live.

We had a long blog post already written about how much better Sasha was doing. It became less and less accurate, until it felt hopelessly misleading.  But Oliver pointed out that as we had posted nothing, our regular readers might be scared and assuming the worst – so, like an old-fashioned editor, he has been pushing me to file. 

 

Here is what happened: Sasha’s interminable delirium monologue grew quieter, then stopped altogether, four days before Thanksgiving. I witnessed a first silence stretch into several minutes, as we sat peacefully in the cafeteria, watching the hospital whirl around us. Until then, the longest silence I’d noted had been eight seconds long. Soon Sasha was able to listen to a story read to him, then read a bit himself, even write a few sentences. Joke around with his brothers. Watch a football game. Go outside and throw the football around. We started to bring in chess pieces, sheet music. . . All this led to a hopeful Thanksgiving in the hospital. In the photos I took of our four children together in the bone marrow unit, Sasha looks dazed but happy, his face puffy from steroids and stiff from Geodon, but interacting, smiling, as if he had just gotten a bad concussion but was otherwise himself. Oliver too wrote a blog post about how encouraging it was. The Doctors started talking about Sasha coming home in two weeks. About how they needed the room for sicker patients…

 

Altogether, we had seven days of no monologue. Then late on the evening of Thanksgiving Sasha started sweating profusely with no exertion. The monologue began again, quietly at first, while Helen was there putting him to bed. She knew what that meant. He did manage to fall asleep Thursday night, but on Friday morning while I was sitting with him he woke up shivering uncontrollably in the warm room, and the monologue was back in force. I recognized that type of shivering from when I had Lyme disease. Rigors: the immune system’s attempt to fight off infection by raising its set temperature. Something had again triggered a full-scale immune response.

 

Throughout Friday Sasha withdrew more and more, clutching his head in his hands, as if bracing for something very bad to come. At 3 pm the Tsunami struck – he began to weep and shout and within minutes was pulled under and away by the full force of delirium.  It was a replay of what happened on Labor day when he returned to the hospital after two days at home. We have no drugs strong enough or specific enough to stem this riptide. Over the next ten days he barely slept and became increasingly remote and unreachable. His white blood cell count shot up from 3.1 to 5.4 to 7 to 9 – higher than his baseline before Cytoxan began.  His segs and bands (immature neutrophil cells) showed abnormal levels consistent with infection. But as is often the case with Sasha when he gets sick, his temperature was no more than 1-2 degrees F warmer than usual. It didn’t even register in his chart as fever. The Doctors ran tests for a bacterial blood infection or other obvious cause, but found none.

 

We know from repeated experience since 2009 that Sasha’s immune response and subsequent illness can be triggered by an unknown agent or agents: bacteria from a cold or  a dog bite –  a virus, whether external or harbored within –  fungus causing a rash –  a parasite –  organic or inorganic allegen? – we don’t know.  This unknown agent or agents triggers overproduction of an antibody which also has no name, and which we have not been able to identify through currently available tests.  That unknown antibody attacks the limbic system and takes him away into severe delirium. That is about all we know.

 

My brother Gideon and his wife Ying and son Troy visited Sasha on Sunday, December 4. He was sicker then than when Gideon had last seen him – the day at the end of September when he first transferred from the PICU into the bone marrow unit. Sasha could barely acknowledge Gideon or Ying – but he lit up in a big smile when he saw Troy, and reached out to hug him.

 

Then Sasha started to improve again, slowly. He is nowhere near as well as he was the week before Thanksgiving. This hellish zig-zag has the effect of robbing Sasha and his caregivers of any confidence that improvement is recovery, or hard won progress is even sustainable. Doctors, nurses, sitters and staff all tend to look at the ground when they talk to me. This pattern is possibly consistent with some benefit from Cytoxan, but it feels like we go through the agony of losing him again and again.  So that is why it has been hard to write an update.

On Wednesday, my brother Oliver and I were able to see Sasha. We were very enthusiastic to see him. Casey was going to drive us there because she does volunteering at the hospital on Wednesdays. Oliver and I piled into Casey’s workbook-stuffed car. We drove through the crowded streets that lead to the hospital. We went up the elevator. Two ladies were in there; all you could see was exhaustion in their eyes. They had pushed the button for the seventh floor, and we asked if they could press number five—the usual.

Once we made it there, we walked down a slightly narrow hall with children’s art work of penguins, chameleons, and people. After walking down the hall and me commenting on my love of penguins, we pushed a large red button that read “Open.” When we did that, a large door swung open that reminded me of a submarine. When we made it through the door, there was another room, as I knew. In the room you have to put on the soft booties and thoroughly wash your hands for 30 seconds or more. But last but not least, the scratchy UNC-blue mask. Then we pushed a similar button that we had pushed in the hallway, and finally made it into the bone marrow unit.

The unit feels friendly, less doctors running about doing things. It is more peaceful than the PICU. We silently walked and knocked on Sasha’s door. I heard mom’s voice say “come in” and we did so. There was Sasha looking sad and frustrated. He did look improved from when I saw him last. His strange words and phrases are now reduced to just a little. He talks quietly and asks, “How are you doing? How is Duke School?”  We both reply, “It is going really well,” and give him a big hug. Mom says we can go and do something in the child life room. We make beautiful flowers and wooden people to hang in his room. The room seems to be glowing with art now.

Sasha and all of us were becoming hungry. We had Sasha’s favorite, fried chicken. My really nice friend Beau and his family brought it over. Sasha was very appreciative and munched it up very quickly. Soon we had to walk back to his room and hug him good bye. I felt very sad leaving, but I felt hope. I feel that he is about to be getting better. I feel that this might be the end of this tiresome saga.

On my way back I was thinking about a lot of things but most of all my fantastic camp I went to for seven weeks this summer: Lanakila. I was remembering Barnes Boffey, the Director of Lanakila, and all the amazing things he does. There is a song at camp that goes like this:

Like men a thousand years ago

Who sailed high seas uncharted.

’ve launched our ships and steered our course,

In every storm brave-hearted.

Then ho for the gale!

Come hoist our sail.

The sun on our shields are striking

And Skol to the man who sails life’s seas

Like a valiant old Norse Viking.

By Winifred Hulburt, 1924

The part of the song that catches me the most is the part that goes “ho for the gale” Barnes was explaining that this meant “bring life on.” We know there will be illness, death, your best friend moves, or you lose your favorite toy. In 1924, is this what Winifred Hulbert meant?

Leo Egger

The Duke Hospital Parking Garage charges $1.00 per hour to park, up to a maximum of $6.00 for 24 hours. If you’ve ever owned a car in a place like New York City, it seems absurdly inexpensive. Why does this giant hospital, a sprawling industrial-scale money-machine that brought in probably over $100 million on angioplasty alone last year, that charges $17,000 for every single one of Sasha’s immunoglobulin treatments, treat its parking garage as a loss leader?

 

Why does it go to all the trouble of employing people to sit in booths and guard the exits just to collect such nominal fees? Is Duke Hospital perhaps motivated by the same theory behind the bargain food and drink casinos offer, designed to put you in a good mood so you’ll stay and lose more at the tables?

 

Back in 2009, after I had already been paying for parking once or twice a day for two months, I heard a kind of rumor that ticket books for parking existed. I had been all over the hospital and never seen any ticket books advertised. Apparently they are a kind of open secret, like the availability of black market stockings in occupied France. You must go to the Hospital gift shop – a tiny place open a few hours per day, that outwardly sells only candy and cards. You mention parking coupons to the cashier, give her the name and room number of your patient, and she will sell you a booklet.  10 tickets for $25.00. Under the table, as it were.

 

The existence of these booklets was nowhere advertised or publicized, not even in the Gift Shop itself. I had never seen anyone else using one. I felt vaguely embarrassed to ask the cashier, but sure enough, the ticket books do exist, and lower the cost of parking even more – down to as little as $0.11/hour.

 

With frequent visits, the toll collectors in the garage come to recognize you, and you them. We live in the South, so not only is the parking a tremendous deal – almost worth being sick for! But it comes with a human touch. When you hand the slender black woman with the fashionable horn-rimmed glasses your time-stamped entrance ticket and a green coupon, she no longer asks for money. She treats you like a regular. The middle-aged white guy with the baseball cap sends you cheerfully on your way, like you are a fellow factory worker punching out. It’s much more intimate – like having a drink in a bar where you’ve got a tab.

 

I recently discovered that even further levels of savings on parking are possible. When Sasha was at a low ebb, about a month ago, the social worker on the bone marrow unit said “you’ll need these” and handed Helen two little white cards with red serial numbers on top, and the social worker’s name and an expiration date of two weeks in the future hand-written below. Clearly a limited circulation item. They are parking passes. You write the serial number on your time-stamped card, and hand it to the toll-collector with the pass. Now you park free, any time.

 

But the toll collector looks at you sadly. Horn-rimmed glasses still asks, “How’s it going?” Baseball cap still cautions, “Drive safe tonight.” But so gravely now that you come to realize the social worker’s pass is a special sign. What it signifies to the toll collectors is the nearness of death.  

 

Three weeks went by. Frankly, I was relieved when my free parking pass expired, and Sasha was still alive. I decided I do not want another one – I’d rather pay for parking! Sasha is in fact doing better – more engaged than he has been in perhaps a month, calmer, with an hour or two each day for the last three days of no monologue. Just Sasha, with his naturally polite manner, exhausted, slowed down, but recognizably himself. 

 

As I pulled out of the parking lot on Friday night, handing baseball cap my $6.00 in cash, he asked me how was it was going, with the warm intonation they use in the South when they actually want to know the answer.

 

“Well, my son has been in the hospital for three months. He’s in the bone marrow unit.”

 

He said, “I know.” 

 

How does he know that? Of course, he saw my pass.  But he didn’t even ask me about the pass. Instead he said, “You really ought to buy yourself another ticket book.”

And so we make it through another crises. No more free parking. Ever.