Well, our consultation with Dr. Deeg at Seattle Cancer Care Alliance is over. He explained the nature and distinctives of Primary Myelofibrosis, hedged at any firm prognostication because the progress of the disease can vary so widely, and laid out the high success rate for CURE of PMF for otherwise healthy young guys like myself. Some of their patients are as much as 20 years clean of the disease. The success rate, given my current “markers” would likely be above 90% but he couldn’t be specific in terms of number-of-years added.
If, on the other hand, I don’t proceed with the transplant, given the rate of its attack on me, I will die from the disease anywhere from 6 mo.- 4 years (assuming that the meds I’m taking continue to enable me to supply necessary nutrients and none of my other organs get seriously impacted by the aberrant blood cells circulating thru my body.)
So, what’s to keep me from scheduling it? At this point it’s a simple matter of $$. They are a research facility and since this procedure is a “luxury” they don’t have any Hippocratic obligation to make allowances for the lower income strata of society. Not counting housing, transportation and “living away from home for 4 months” costs, they are now able to offer a bone marrow transplant for just under $600,000. Such a deal!! At least it’s not a heart transplant, I hear they’re over $1 million. We’ve been blessed to be part of Samaritan Ministries need-sharing program for nearly 20 years and they would be able to throw in $250,000 to the mix. I could have been paying a supplemental fee for catastrophic coverage and we’d be “home free” –but, I didn’t. There may be some Washington State health coverage options that could make up the difference, we’ll have to see.
Regardless of the $$ issue, the doctor would like to see me continue on this new drug (Jakafi) that should further improve my quality of life (energy, appetite, etc) for a couple of months in hopes that my overall body strength would increase prior to the rigors of a transplant. So, that’s where we are today. We’ll proceed to test siblings for a good match and research funding sources.
Many have already been generously contributing to our living expenses –we are . . . well, there aren’t words. Needless to say, through your prayers, gifts and words of encouragement our anxiety level and financial indebtedness are both at 0!
“Don’t worry at all then about tomorrow” Matthew 6:33-34
J. Dan Small (with Rebecca, Tirzah & Sharon)