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Journey Hardcover – 1975
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Unlike European monarchs' genetic hemophilia, the Massies' was a mutation that seemed to come from nowhere. And, I learned from "JOURNEY" (1973), hemophilia is not at all as rare as I would have imagined. Well written, lots of info on how hemophilia treatment has progressed over the decades since their son was born.
Their adult son, Bob Massie, has his own memoir published, "A SONG IN THE NIGHT: A MEMOIR OF RESILIENCE" (2012) and it's enlightning to read of the 3 separate viewpoints on how they each suffered and eventually "handled" this difficult situation. I came across the son's book first, then bought the older book by the parents for the depth of understanding it gave.
Fascinating family--- now famous, both published writers, who can therefore tell their story. So many other hemophiliac children go unheralded. I respect the trials they all endure, and their resilience, each of them. And I'm so thankful in their behalf for the science that has improved the lives of hemophiliacs in the developed world.
First, their oldest child, Robert Jr. (Bobby) was born in 1956, and was quickly diagnosed with hemophilia. Journey chronicles their experiences in dealing with this disease on a first hand basis for the first 18 years of their son's life. Second, it shows how they educated themselves about this chronic, debilitating and sometimes fatal disease. At that time, the treatment of hemophilia was not very sophisticated, and they were often at the cutting edge of pioneering treatment. Thirdly, in the course of their research, they became fascinated with the story of Queen Victoria and how hemophilia (that was passed through her) affected so many of the royal houses in Europe. This led them to the last Tsar and Tsarina, Nicholas and Alexandra Romanov. The Tsarevich Alexei was a hemophiliac and how Nicholas and Alexandra dealt with this crisis changed the course of Russian history and the Russian monarchy. The Massie's also give great details about the different forms of hemophilia-some more severe than others. We learn that Alexei had a relatively mild form of the disease. While the only treatment available in the early 1900's was ice and immobilization, Bobby Massie required hundreds and hundreds of transfusions to get him through childhood. And finally, Journey details the politics of the American Red Cross, and various government agencies and private companies in dealing with the treatment and manufacturing of blood agents for hemophiliacs. Don't believe for a minute that their first priority is what is best for the patient.
This book also relates the story of how their research led to Robert's writing the classic, Nicholas and Alexandra. This was the book that hooked me on the Romanov's while still in high school, and is still today one of the best written on this subject.
Journey was published in 1973 and much has happened since then. There are now many more treatment options available in the treatment of hemophilia. Unfortunately, much of the blood supply used for treatment was contaminated by HIV in the 1980's and many hemophiliacs ended up with AIDS. But the good news is that Bobby has grown into a brilliant man. After receiving degrees from Princeton, Yale, and Harvard, he is now an Episcopal priest and a published, award winning author in his own right. He is married with several children. The bad news is that for whatever reason, Robert and Suzanne Massie's marriage did not survive. Still, despite being published so long ago, Journey is a good book to read for those wanting to know more background about how the Nicholas and Alexandra story came about.