MSI Press Blog

  Cancer Diary, begun after the death of Carl Leaver from a so-far-inexplicable and very aggressive cancer, Cancer of Unknown Primary , takes the day off on March 20 to mark his second marriage anniversary in Heaven. Carl was married March 20, 1970 and died August 16, 2021, five months after being diagnosed with CUP. Carl's wife marked this special day with lunch at Carl's favorite restaurant, Pizza Factory, with his lookalike son, who has CHARGE Syndrome , and the son's caregiver and her family. Carl's Cancer Compendium, founded to help families who suddenly find themselves faced with a diagnosis of cancer with little places to turn except lots of time lost to Internet research, updates the site weekly. This week a major reorganization was begun to make the site easier to read and a place where information can be found more quickly. Check it out! (It is quite fitting that today is also Nowruz , a new year and time of new beginnings.) For other Cancer Diary posts, clic

  Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare disease. Rare Disease Day is meaningful for MSI Press since one of its authors, Shenan (CB) Leaver suffers from CHARGE Syndrome. CHARGE is so rare that he is one of only a handful of survivors in his age group worldwide -- he has personally found four besides himself! CHARGE Syndrome is a disorder that affects many areas of the body. CHARGE is an abbreviation for several of the features common in the disorder: coloboma, heart defects, atresia choanae (also known as choanal atresia), growth retardation, genital abnormalities, and ear abnormalities. The pattern of malformations varies among individuals with this disorder, and the multiple health problems can be life-threatening in infancy. When CB was born 42 years ago, CHARGE was not even known! Now, 70% of children born with CHARGE make it to age

  (photo from last year, in anticipation of changing that number this evening from 41 to 42) November 13 today is CB Leaver's birthday. CB is the MSI Press author of the popular Mommy Poisoned Our House Guest and one of the oldest CHARGE Syndrome adults in the world. He knows only three others world-wide (Ohio, Massachusetts, and Netherlands) who have reached his age of 42 years (one is actually 45, the others are 42, as well) but thinks there may be another one or two somewhere. It is no mere feat, then, that he has survived, and robustly so, after a very tenuous start in life in which he as given 0% chance of survival by well respected doctors at Children's Hospital of Pittsburgh and rescued by doctors at Children's Hospital in Boston, Cincinnati Children's Hospital, Children's National Medical Center, Georgetown University Hospital, and Stanford Children's Medical Center -- it took a countrywide network to turn that 0% into 100%) and no mere feat also that