MSI Press Blog

  My eyes are pretty good -- well, actually, very, very good. At 75, I still do not need glasses (per my last eye exam three days ago). This only once in a while seems unusual to me when one friend or another complains about an eye problem or glasses or... eye cancer (yep, there it is, the big C associated with eyes). When my CHARGE Syndrome son, who lives at home with me, saw his own eye doctor the next day, I learned that it really is very rare to have normal near vision at my age. The doctor prepped my son for what she thought would be unpleasant news (that he would have to start wearing glasses now at age 45). Age 40 is kind of a magical line, she explained in language she hoped he would understand. Once you cross that magic line, you can pretty much expect to need glasses. "Uh, not always," I interrupted her. "I crossed that line 35 years ago, and, well, nada changed." She ignored me -- what could she really say -- and proceeded to check my son's eyes. Res...

  Carl Leaver , to whom Cancer Diary and the CCC are dedicated, has a lookalike son. Their interests and behaviors are essentially the same. Carl's son CB has his same build -- except that he is a foot shorter, part of the CHARGE Syndome with which he was born. Carl died of Cancer of Unknown Primary; however, his oncologist believed (gut instinct plus experience) that it started in the colon. Carl could have had regular colonoscopies, but he foolishly chose not to because he was super-healthy. (The only time he was sick enough to vomit was one day when he was 21.) Unfortunately, he died super-healthy. Never vomited again, ever. Never felt sick until cancer wore out his energy and his muscles and then his thinking capacity. So, lesson learned? CB gets regular colonoscopies? His siblings do, and his brother has had some polyps removed. CB, however, cannot. As his gastroenterologist says, as a result of CHARGE Syndrome, CB has a 35% chance of dying from any procedure that requires int...

    Peek into the future! Wait just a bit. Coming up some time this year is the publication of Cold Heat and Crazy Doctor, a new book by Betty Lou Leaver, highlighting the hilarious language usage of a CHARGE Syndrome child/adult with disinhibition and providing scientific explanations for the lexical choices.  Watch for upcoming excerpts. For more posts about Betty Lou Leaver and her books, click  HERE . Sign up for the MSI Press LLC newsletter Follow  MSI Press  on  Twitter ,  Face Book , and  Instagram .   Interested in publishing with  MSI Press LLC ? Check out information on  how to submit a proposal . Planning on self-publishing and don't know where to start? Our  author au pair  services will mentor you through the process. Interested in receiving a free copy of this or any MSI Press LLC book  in exchange for  reviewing  a current or forthcoming MSI Press LLC book? Contact editor@msipress.co...

Peek into the future...and wait just a bit. Coming up some time this year is the publication of  Stealing Doah , a new book by Elizabeth Mahlou.  The first time. Doah, a CHARGE Syndrome baby, at six months, was losing weight daily while in the hospital, where the staff was insisting in the kind of care that the mother and pediatrician and already determined would result in failure to thrive. Then, the hospital proposed surgery as the best approach, and the pediatrician, with a little research, learned that the suggested surgery had 25% chance of success and a pretty high risk of death. (Years later, research would show that most surgeries had a 35% chance of resulting in long-term dependence on a life machine and a poor prognosis.) The hospital decided to seek custody from the courts (without informing the parents). Elizabeth found out because she read -- and understood -- all Doah's medical records, and the doctors had left a trail. Propelled by gut instinct, Elizabeth stole ...

    Peek into the future! Wait just a bit. Coming up some time this year is the publication of Cold Heat and Crazy Doctor, a new book by Betty Lou Leaver, highlighting the hilarious language usage of a CHARGE Syndrome child/adult with disinhibition and providing scientific explanations for the lexical choices.  Watch for upcoming excerpts. For more posts about Betty Lou Leaver and her books, click  HERE . Sign up for the MSI Press LLC newsletter Follow  MSI Press  on  Twitter ,  Face Book , and  Instagram .   Interested in publishing with  MSI Press LLC ? Check out information on  how to submit a proposal . Planning on self-publishing and don't know where to start? Our  author au pair  services will mentor you through the process. Interested in receiving a free copy of this or any MSI Press LLC book  in exchange for  reviewing  a current or forthcoming MSI Press LLC book? Contact editor@msipress.co...

  Peek into the future...and wait just a bit. Coming up some time this year is the publication of Stealing Doah , a new book by Elizabeth Mahlou.  The first time. Doah, a CHARGE Syndrome baby, at six months, was losing weight daily while in the hospital, where the staff was insisting in the kind of care that the mother and pediatrician and already determined would result in failure to thrive. Then, the hospital proposed surgery as the best approach, and the pediatrician, with a little research, learned that the suggested surgery had 25% chance of success and a pretty high risk of death. (Years later, research would show that most surgeries had a 35% chance of resulting in long-term dependence on a life machine and a poor prognosis.) The hospital decided to seek custody from the courts (without informing the parents). Elizabeth found out because she read -- and understood -- all Doah's medical records, and the doctors had left a trail. Propelled by gut instinct, Elizabeth stole...

  Today's back story is about the book, Mommy Poisoned Our House Guest  by Shenan (CB) Leaver with Betty Lou Leaver. From the co-author: CB Leaver , the author, is a mentally challenged CHARGE Syndrome adult who never learned to read or write. His mother, Betty Lou Leaver, a highly published author, who wanted her son to understand the purpose of the written word: sharing thoughts and/or information with others. It took a full year of working together to put CB's remembered stories on paper, to check that they had been accurately transcribed. CB learned a lot about the written word both in the process of writing and in getting feedback from pre-publication readers of the manuscript. CB subsequently did a book signing at the Los Angeles Book Fair. He had a great time learning about reader reactions to his book. He was also adept at using his people skills and humor to draw readers to his booth.  Book available at 25% discount with code FF25 at msipress.com/shop. Read exce...