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The miracle month

The miracle month

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 what’s 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.

family photo

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, slurred 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 caught 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. For more about the body’s immune defense system and

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. )

myelin sheath diagram

A watch and wait vigil began. Glenn’s own immune system (suppressed since 2006 by 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. You’ll comprehensive

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 wheelchair 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 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.

Discover 13 symptoms of a weakened immune system.

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 day-by-day improvement.

Portfolio Room

Portfolio room at the Austin SCBWI 2012 Regional Conference, “Something for Everybody” at St. Edward’s University in Austin, Texas

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 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. You’ll enjoy checking out the full series of guest posts and the chat transcripts for the Thursday night KidLitArt Twitter sessions you’ll find archived there.

About The Author

Mark Mitchell

Award-winning children's book author-illustrator Mark G. Mitchell teaches classes in watercolor painting and children's book illustration at The Contemporary Austin Art School in Austin, Texas. Mark is also the creator of an online course, "Make Your Marks and Splashes: A Natural Approach to Children's Book Illustration."

31 Comments

  1. JG

    My thoughts are with you and your family; this blog can go on hold until you can think clearly enough to add anything more. We will all be happy to wait for as long as it takes.
    I’m sending you ‘positive vibes’ for your step-son’s recovery from across the pond in England.

    Reply
    • Mark Mitchell

      It means so much! Thank you, June. I think we continue to feel those good vibes way over here. Please keep sending them.
      Thank you for commenting and thinking of us in this difficult time for Glenn and his family!

      Reply
  2. JG

    This blog can wait until your mind is clear of worry. We will all be happy to see new posts resume whenever that time may be.
    I am sending you positive vibes across the pond from England for your step-son’s speedy recovery.
    Hug your family close and don’t give this blog another thought until circumstances are better.

    Reply
  3. margie blumberg

    Wishing Glenn a complete and speedy recovery! Please keep us posted, Mark, on his progress, and, in the language of baseball–in this season of his miraculous turnaround–do let him know that we’re rooting for him.

    Reply
    • Mark Mitchell

      Margie, thank you so much for keeping up with me, reading all of this about Glenn and sending your wishes for his speedy recovery.
      He is now beginning to learn to walk again in therapy! We’re still waiting for his vision to return. There are other challenges ahead and we’re waiting for another miracle or two, I’m afraid (now that we’ve been spoiled by the several we’ve already had)
      The big miracle, the one that spoiled us) is that we still have him and he’s still very much himself with a great heart, mind and soul.
      I know that you’re rooting for him and it means a lot to me, as do your words here.
      -Mark

      Reply
    • Mark Mitchell

      Debbie, I am so late in responding to your and everyone’s kind comments and expressions of support. Please forgive my terrible lateness in answering. But your words and prayers have meant a lot. Please keep Glenn and his family in your prayers. Thank you so much.

      Reply
  4. Linda Hampton Smith

    Dear Mark,

    You and Glenn and your family are very much in my thoughts and prayers. Sending you light, love and healing wishes.

    Reply
    • Mark Mitchell

      Linda, thank you so much. Your writing here, prayers for Glenn and the love and light you send are a wonderful gift.
      -Mark

      Reply
  5. Mary Martin

    Hi Mark,

    What a nightmare for you and your family and it’s doesn’t appear to be over just yet. When we are in crisis it seems to stop us in our tracks as the rest of the world keeps turning.

    I’m so sorry to hear of this frightening ordeal. Amazing how strong we are when something like this happens. Family rallying together in prayer and to support to each other is sometimes the stronger medicine. Your step-son will be in my prayers.

    My family has been through similar circumstances, holding watch for months as my 17 year old niece battled cancer. Every day another complication, then a moment of hope only to be extinguished by the very treatment they were administering to save her. We lost our battle and Chandy passed away before she had the chance to wear her prom dress.

    Bad things happen…life is unfair…all the sentiments shared, but don’t help in resolving the tragedy. Time is a friend in situations like this.

    Don’t worry about us, your students, as you take time to be with family. We’ll still be here when you can make us a priority again. Until then, only prayers and best wishes for you and your family.

    Mary

    Reply
    • Mark Mitchell

      Mary, I am so sorry to hear about Chandy and her fatal fight with cancer while still in high school. It sounds — feels like — like your niece was brave and patient in her ordeal, as Glenn has been. These kinds of experiences have no words, they’re beyond human understanding.
      Two weeks ago, Glenn’s real father, who lives in another town but was making 3X per week visits to Glenn at the skilled care facility, died peacefully of a heart attack — and Glenn attended his funeral in wheel chair, unable to see.

      The crisis which began at the first of the year, continues — most of it in our minds and imaginations. But there has been remarkable progress, too and those miracles

      Thank you for your your keen understanding, prayers and good wishes — and patience with my lapses in the past five months.
      Your expression and gracious show of support here means a great deal to me.

      –Mark

      Reply
  6. Laura Anne Miller

    Mark – this is wonderful news. Our family has been praying also for Glenn. My mother has polymyelgia rheumatica – which has devastated her neurological system and ability to walk -as well as being in constant pain. She has been the route of steroids and depressed immune system as well. We will continue to pray for Glenn and all his family – you are in need of encouragement and hope too. and by the way – have never thought of you as rude, distracted, or unengaged with us as students. Life comes along and it is then we need our friends to understand and support us – which we do you! God bless and keep you!

    Reply
    • Mark Mitchell

      Thank you for your wonderful message of support, Laura and for you and your family’s prayers for Glenn.
      I’ll keep your mother in my prayers. Her condition and symptoms sound remarkably like Glenn, although she is in considerably more pain, it sounds like. She’s lucky to have you near and I know you are a great comfort to her and source of strength.

      Thank you for your friendship, Laura.
      Mark

      Reply
  7. Felicia Lilley

    Mark,
    All I can say is wow.You HAVE been going through a lot as has your stepson. I want to be the first to say that if I have seemed impatient with you about anything or tried to rush you in any way, please forgive me.
    I truly ask that God will be with you and your family through this fight. Just remember that God’s time isn’t ours. SO, although Glenn may not be seeing fully at this point … all things are possible through Christ our Lord.
    Take care,
    Felicia Lilley

    Reply
    • Mark Mitchell

      I appreciate your message very much, Felicia — egregiously late late as my response is.
      I read yours and all these messages as they came in, awed by all the attention to the post and the kindness
      in the comments.

      I couldn’t bring myself to answer because I had no words. I was worried and still so much was still unfolding — for example, Glenn’s father passed away in the first week of May, a few days after Glenn’s birthday.

      I agree with you that all things possible through Christ and Glenn is an example, the way he’s been facing up to extraordinary life changes and family upheaval. His attitude is miraculous — a gift from God.

      Thank you for your prayers for our family.

      Mark

      Reply
  8. Patricia Halstead

    Mark, thank you so much for sharing this with us. I don’t know how you managed to do the critiques but you did and we are grateful. Yes, prayers that his progress will continue.

    Reply
    • Mark Mitchell

      Thank you, Pat. Please keep up your wonderful prayers for Glenn and his family.
      Warm regards, Mark

      Reply
  9. Toria

    My thoughts are with you & your family, especially Glenn and his wife & kids. I have MS too and gosh it can be scary. The irony of an MS treatment inadvertently causing a worse myelin attack than the disease it is treating is just so cruel & unfair. I hope Glenn’s hard work and good luck continue his improvement.

    As for the blog? It can wait. We will wait. Family is much more important.

    (Incidentally, my MS is a huge part of why I found you, as I am trying to switch to being a freelance illustrator so that I can control my working conditions around my MS, because I no longer have the energy to work full-time outside the home whilst still being a mum to my preschooler.)

    Reply
    • Mark Mitchell

      I remember you telling me this, Toria, about your MS. I know you understand more than most about the limitations MS places on individuals.
      Glenn has just this week left the skilled care nursing facility and is now recovering at his mom’s home and doing outpatient therapy at a hospital rehab center — to learn to walk again. He still cannot see. But he remains very courageous and calm through all of this. At his own home, meanwhile, his wife works to keep the house up and keep life as routine, normal and calm for their two small children as she possibly can
      under this unnatural situation.
      Thank you so much for your kind words — and understanding here. Please forgive me for being so late in answering.
      Best,
      Mark

      Reply
  10. Adrienne

    Thank you so much Mark for sharing this part of your personal story. My prayers are with you, with Glenn and Glenn’s family. Your stepson’s courage in responding to challenge after challenge is the essence of poignancy, and truly inspiring.

    Reply
    • Mark Mitchell

      Adrienne,
      Thank you so much for your prayers for us, for Glenn and his family. I’ve been so terrible about responding to these wonderful personal notes here because I’ve been at a loss for words as we watch events continue to unfold. Glenn continues to be patient and courageous.
      Your reading through my long post and being thoughtful enough to write me about this topic is a wonderful show of support and means a lot to me.
      Warm regards,
      Mark

      Reply
  11. Pat Jaquay

    Mark ~

    Never have had the pleasure to meet you, but I do know your Mom, Alice, we are long ago classmates. She has kept me posted on Glenn’s progress. Just wanted you to know, I, too, will lend prayers for Glenn and the family to stay strong and overcome all that is possible.

    Reply
    • Mark Mitchell

      Pat, your visits with my Mom mean a great deal to her, and by extension, to me. Thank you for touching base with me here and lending your prayers to Glenn and our family.
      All the best to you,
      Mark

      Reply
  12. Alan Stacy

    Mark I had no idea you and your family had such an ordeal to bear. I will add your stepson Glenn to my prayers and pray for even more strength for you folks to bear up under such unbelievable circumstances. You have my best wishes and thoughts.

    Reply
    • Mark Mitchell

      Alan, I really appreciate your kind comment, wishes and thoughts. Look forward to catching up with you a little next time we’re at an SCBWI or illustrators event. Thank you.

      Reply
  13. Mary Radovich-Miller

    Just read this post– trying to catch up on my emails. Thank you for sharing about Glenn. We will pray for him and all of your family.

    Reply
    • Mark Mitchell

      Thank you so much, Mary.
      I appreciate your prayers for our family very much.
      -Mark

      Reply
  14. Jen Klentzman

    Hi. I’m so sorry to hear about your stepson. I have a few questions for you if you don’t mind me asking- my husband has been prescribed tysabri for his ms and we are weighing our options. Do you know if he was jcv antibody negative before beginning the drug? Or did he contract it after being on tysabri? How long was he on tysabri? Was he being tested for the jcv regularly, or how did they catch it? Do you think that being on tysabri made him more likely to catch the virus? Have your other family members been tested to see if they carry the antibodies? I’m sorry for so many questions, but we are concerned about the high risk associated with this drug, obviously, but also intrigued by the thought of no new disease progression… Anyhow, any information or advice you have would be greatly appreciated. I will keep your son in my prayers.

    Jen

    Reply
    • Mark Mitchell

      Hi Jen, you’re asking great questions.

      I’m sorry that I don’t know any of the answers except yes, taking the Tysabri made him vulnerable to the virus.

      He must have already been carrying it. The result was that after nearly six years of the Tysabri’s suppression of his Central Nervous System’s immune system, o the virus passed through his blood-brain barrier — resulting in the PML.

      Glenn’s apparently was the first case of Tysabri-induced PML in the Austin, Texas area. But there have been others since then.
      There are now more cases of Tysabri-induced PML occuring around the country — 5-6 years seems to be the threshold before the jvc reaction occurs (when it does occur.) In fact 6 years ago was about the time Glenn started being administered the drug (shortly after the FDA let it back into the marketplace.)

      Glenn was told his chances of having a dangerous reaction from it were two out of a thousand. I don’t know if those odds have been re-calculated since 2006 or not.

      None of his blood-related family to the best of my knowledge has been for carrying antibodies to the JC virus. I don’t know if Glenn was tested for antibodies or the virus before he started receiving the drug.

      His physician, Dr. Edward Fox is Austin’s and Central Texas’ premier MS specialist.

      http://www.neurotexasinstitute.com/OurDoctors/neurology/dr-fox.aspx

      http://austin.citysearch.com/profile/34490710/round_rock_tx/fox_edward_j_md_multiple_sclerosis_clinic.html

      Your husband’s MS physician might want to contact Dr. Fox — because he’s been putting together a massive study on Glenn’s case.

      I hope some of this helps but obviously I don’t have the important answers. Thank you for keeping my stepson in your prayers. I will keep your husband and family in my thought and prayers as well.

      -Mark

      Reply
      • Jen Klentzman

        My husband has seen dr Fox! We live in Austin! We just met with him a couple of weeks ago and he told us if the one case of PML he has seen- it must be your son! Those are similar statistics to what we’ve been hearing, although both Dr. Fox and Dr.Little, my husband’s neurologist at the VA say that since he is jcv negative that he has such a low chance of getting the jc virus that it is totally safe. Dr fox said that if he had ms he would go on tysabri himself as long as he was tested at regular intervals for the virus. We are just wondering if being in tysabri would make my husband more suceptable to the virus. From what we’ve read children are more likely to catch it, but we have three young children, one starting school this year, so if they bring it home undetected and he is on tysabri, then what? I know it is a terrible and difficult situation to be in and I am so so sorry for what y’all have gone through. It is really easy to hear stats like 1/1000 unless you are that 1. Had Glen been on other ms medication before this? My husband has been on copaxone for 7+years but has a new lesion on his spinal chord so they are wanting to get more aggressive with treatment. We are pretty heavily burdened with this decision. Thank you so much for taking the time to read and respond!

        Reply
        • Mark Mitchell

          Hi Jen,

          Well it’s a small world! I don’t know about people’s susceptibility to the jc virus — other than that about 60 percent of us carry it around in us.

          Glenn was on a few different drugs for his MS before the Tysabri, but the lesions kept coming.

          He’s back on copaxone now.

          You and your husband are asking all of the right questions. Keep asking, keep up your due diligence and I trust you’ll make the right decision for your family.

          Reply

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