You might have noticed that the blog has been left with the lights still on, but untended lately. Not a lot of discussion about illustration, drawing or painting has been going on here. I’ve been distracted by worry — not an uncommon ailment in families. Yes, I’m going off the topic of children’s book art — just for today. Because I want to explain whats been happening and ask your indulgence in my failures to post this first quarter of the year.
My stepson Glenn had been taking an intravenous drug to keep his multiple sclerosis in check. It was a true wonder drug, brand name, Tysabri that had allowed him to remain at work in a demanding telecommuting job and stay highly engaged as a wonderful parent, with his wife, of two small children.
Perhaps the drug worked too well. It completely suppressed his immune system, leaving him vulnerable to an intruder, a strange little virus carried by most of the human population – the John Cunningham (JC) virus.
Glenn’s first symptoms were failing vision, weakness, blurred speech and a loss of balance. Just after New Year’s Day he was diagnosed with progressive multifocal leukoencephalitis, a rare, often fatal viral disease (called PML for short, mercifully.)
The virus, which most of us catch in early childhood, never troubles us much — unless our central nervous system immune barrier stops working. Then it can pass from the blood into the brain and trigger the condition of PML.
PML attacks the myelin sheathing of our nerves. Myelin is the white tissue of the brain, an electrically insulating material that wraps our nerve fibers and actually speeds the transmission of electrical signals.
In fact the auto-immune disorder MS acts the same way as PML, chewing up these insulated nerve pathways and leaving scars that block the nerve signals. But PML is more aggressive and there’s no medicine or cure for it except the body’s natural immune defense system.
Tysabri molecules were removed from Glenn’s plasma in an emergency series of blood transfusions.
But it didn’t slow the progression of symptoms. Over the next few weeks we watched in helpless terror as he lost his vision, his abilities to speak clearly and remember what had been said to him just moments before.
His brain stopped communicating with the left side of his body. He could no longer walk, sit or hold up his head (although he still had use of his right hand and right leg. )
A watch and wait vigil began. Glenn’s own immune system (suppressed since 2006 by the the Tysabri) would have to wake up and confront the virus.
But that first month, his body did not want to engage the enemy.
He was moved from the hospital into a skilled care nursing facility.
No one knew where this was going — not even his doctor, a highly regarded MS specialist. Glenn was his first case of PML induced by Tysabri.
A new threat appeared, even more life-threatening than PML.
Glenn was now joining the battle. But sometimes when a CNS immune system awakens to danger, it over-reacts. The result is the brain swelling, like you see in severe head injuries.
Steroid drugs were administered to counter the inflammation. Doctors wanted Glenn to fight — but not overly hard. They wanted to manage the immune reaction like a controlled burn — and wait for the forest fire (the PML) to rage itself out.
There was nothing for us to do but hope and say our prayers. There was nothing for Glenn to do but try to survive
He turned the corner ten days ago. His sentences became longer and his speech, more coherent. (I should say that a therapist at the center had been working with him every morning on these abilities.
For the first time in nearly four months, he moved his left foot. The next day Glenn was lifting his left leg off the bed, demonstrating for anyone on the floor who could stop and watch.
One evening while he sat propped up in bed, visiting, his left arm moved on its own. It straightened out a little at the elbow, almost as if by accident. Glenn paused mid-sentence. He looked at his arm and started to cry.
“I don’t want you to think I’m crying because of pain or sadness,” he told us. “These are tears of joy.”
Last night I saw Glenn stand by himself — and my eyes had difficulty believing the sight. His nursing attendant Blanca was helping him from his wheel chair to his bed. But she didn’t pull or lift him this time. She just stood close for support. “Okay you can do it, Glenn,” she said.
He raised up somehow on both legs, holding on to her shoulder for balance. He turned a quarter of a circle and sat himself on the bed.
He has a long road ahead and he knows it. He’s still blind. Yet his vision, or much of it could return.
He’s still quite weak — his muscles have atrophied after four months in bed. But the therapy will be stepped up and expectations are for him to be able to walk again.
His MS has not gone away — and Tysabri is no longer an option to help him. But we’ll take — and celebrate — this day and future days as they come.
His physician, therapists and caregivers have been superb and kind. Glenn has shown uncommon bravery, toughness, patience and wisdom (typical for him, really) — as has his family.
The most devastating thing I’ve ever seen has turned into the most extraordinary thing. We’ve seen enough miracles unfold in the past few days to last a lifetime. Or maybe I should say, we’ve seen enough miracles now to know that life teems with them.
So, if you’ve seen me not “showing up” lately here’s my why — my “dog ate my homework” story.
To my friends: if I’ve seemed distracted while dealing with you since the first of the year or rude in the way I’ve not responded to invitations or replied to e-mails or phone calls, please excuse, understand and forgive me.
Now that things actually might be returning to normal, I’ll take my cue from Glenn — and strive for improvement.
And you thought this was a blog about children’s book art crafting…
Oh, it still is. I have photos of the Houston and Austin SCBWI 2012 regional conferences and from Dan Yaccarino‘s Picture Book workshop and some interviews from the 2012 Digital Heroes Tour to share with you in the coming days.
There’s a one- question trivia contest newly up on the other blog.
We’ll select a winner Wednesday so there’s still time for you to enter. The winner will receive a link to Dauntless Design, a lesson from the Make Your Splashes – Make Your Marks! online course.
I have a guest post up on the KidlitArt blog — part of their Picture Book Dummy Challenge series. The topic is how to turn a thumbnail scribble into a full-sized finished sketch. I think you’ll enjoy checking out the entire series of guest posts on the blog there and reading the chat transcripts for the KidLitArt Twitter sessions on Thursday nights that you’ll find there.