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4/18/2016 Latest post:
For those who didn't know, here is a summary of how Bill/Billy/Beej got to the point of being featured on a CaringBridge site--an honor he will likely not be pleased with once he learns of it.In spring of 2015, Bill was diagnosed with two forms of blood cancer; myeloproliferative neoplasm (MPN) and myelodisplastic syndrome (MDS). Beej would chastise me if I were to botch an explanation of these, so I won't even risk that by going into more detail. (truth is, he probably knows more about these two diseases than most doctors do). Because his complex condition would likely render most conventional cancer treatments ineffective, the doctors advised that he would need a stem cell (bone marrow) transplant. All of we siblings were tested and the search ended when sister Jan was identified as a ‘perfect match’ and more than willing to donate her cells for brother Beej. The stem cell transplant, preceded by one week of chemotherapy, took place in early November last year. Beej did really well during his 4-5 week stay at Northwestern’s stem cell floor of its Prentice Pavillion. He showed very few of the negative side effects, and then it became a game of ‘wait and see.’ Beej returned to work (some office, some from home) and was being regularly tested for signs that the donor cells were taking hold. After some reports of progress, his ‘fsh’ numbers (indicating what percentage of his stem cells were Jan’s healthy cells) peaked at 36% and fell back down to under 10%. Because the initial transplant was unsuccessful, Beej underwent another 2 rounds of week-long chemo treatments in preparation for a second stem cell transplant.. By the end of his last treatment in Mid-March, he was feeling weaker than normal. His blood counts, and in particular his white blood cells--whose primary purpose is to fight infection--were effectively down to zero. That was the goal of the aggressive chemotherapy, so that his body wouldn’t fight the foreign stem cells from the planned second transplant..After going in on March 31 for his scheduled blood draw, he was admitted that same day to Northwestern’s medical intensive care unit (MICU). Beej had contracted an infection in and around his appendix--and his body had no immune system to fight if off with. As we now know, this is one of the inherent risks of preparing for and having a stem cell transplant. Bill’s infection turned into sepsis, and coupled with his reduced blood pressure, he was in ‘septic shock’ for about a week before his blood pressure returned to acceptable levels.. On top of his septic condition, Beej’s kidneys (already compromised from years of taking ‘NSAID’s --ibuprofen, Alleve, etc.--for his gout condition) began to under-perform. He was put on continuous dialysis (CVVH) to give his kidneys a rest, and has since been put on intermittent (several hours, several times a week) dialysis in hopes of kidney recovery. Bill has been an unbelievable warrior throughout this entire ordeal--before his ICU stay and since--and so has his fiance’, Sherry. Before he became too sedated to communicate, the staff consistently referred to Beej as “one of the nicest patients” they’d ever tended to. And that comes from folks we consider to be his greatest allies--the nurses, therapists and doctors here at Northwestern--keeping him going and helping him fight this very complicated beast...quite literally one day at a time.Thank you for caring enough about Bill/Billy/Beej to read his story and follow in his journey. Continued thoughts, prayers and support are greatly appreciated.