Mark keeps his family and friends updated on Vadim's situation with moving, beautifully written posts on Caring Bridges. He often expresses his gratitude to the doctors and other healthcare professionals who care for his son.
But last week, Mark described his frustration with the "the inexplicable complexities of our healthcare system," the lack of communication among specialists, and the rarity of outside-the-box thinking. With Mark's permission, I've shared that portion of his post, below.
But first, a brief summary of Vadim's story: Stricken in his second semester as a freshman at Harvard, Vadim was eventually diagnosed with a rare autoimmune disorder called "paraneoplastic syndrome" that led to devastating encephalitis. His hospitalization started on March 26, 2013, at Boston Children's Hospital. A month later, Vadim was transferred to Johns Hopkins in Baltimore. After almost five months there, he moved to National Children's Hospital in Washington D.C.
He's been at home since mid-July. His grandfather told me today that Vadim had enjoyed three hours on the back deck of their house.
Here is Mark's recent commentary on our healthcare system, in his own words:
This has been another exercise in the inexplicable complexity of our health care system. Different departments in the same hospital do not communicate with each other in real time to brainstorm and to arrive at a unified theory of the case. Really? A surgeon responding to a basic question with the haughty quip "if you don't trust my work, you should speak to somebody else." Mamma mia! A disembodied voice at a doctor's office at another hospital contacted for a second opinion absurdly asserts they will speak only with other doctors "as a matter of policy." Oy vey!
As a rule of thumb, we have learned to reject such nonsense. We need to call on each other to use our collective big human brains to their fullest potential to improve things and not accept mediocrity.
Think about it. We are all just biological blobs, some more fit than others, some younger, some older, but we are all small and fragile, all merely mortal, and all united by the slings and arrows of human (un)health. If we don't help one another stumble through this life, we will be alone and even smaller as people.
Once again, we have found that the publicly-funded brain trust at the National Institutes of Health have been willing to think outside the box. The world – at least our small world around Vadim – is in desperate need of more doctors who know how to think like scientists and are not satisfied with the usual thing just because it's easy or profitable. Fortunately, we have come across a few of these exceptional bright lights.
If Vadim could thumb his nose at the state of modern medicine, doubtless he would. And yet, as far as we can discern, despite all the unspeakable things he has endured over the past two and half years, his spirits remain quite high.
On the bright side, Vadim has exhibited remarkable responsiveness, in spells. He has at times been vocalizing and trying to sing along to some tunes. He keeps hankering for more physical exercise and almost always tries to cooperate when we are moving from bed to wheelchair and back. His fortitude can only be called heroic.
This photo was taken on Mother's Day 2012, when neighbors on our cul-de-sac gathered for a musicale that featured talent of the young and old. While Vadim plays piano here, his real love is the guitar.
Reading Mark's posts can be heartbreaking. But he always ends with at least one link to a musical performance, often guitar, that restores your spirits.
Here's the thumping beat of Swedish House Mafia from Vadim's 2012 rowing workout compilation: https://www.youtube.com/watch?v=drab_CQaCj0I recommend clicking on the link.