For those who’d like to participate in my potentially life-saving bone marrow transplant, here’s one way to do that:
http://www.payitsquare.com/collect-page/14932
Because we are prayerful and hopeful that God will cure this with a miracle, feel free to use the PLEDGE rather than the GIVE button in case we end up not needing the money.
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)
Pardon my fatherly tone here but this blog is first and foremost a platform (or soapbox) for me to communicate to my own children and grandchildren some of the things I’ve learned over the years in hopes that they’ll catch on much earlier than I did.
So, as more and more friends become aware of my potentially terminal prognosis, their deep concern for me and our family is poured out in many prayers for us. For that we are unspeakably grateful.
And, having been in their position numerous times myself, I have a pretty good idea of how those prayers sound. “Lord, please heal Dan.” “Lord, give the Small family peace.” “Lord, give the doctors wisdom.” “Lord, DO SOMETHING! NOW!”
These are all heartfelt expressions and desires we have in common whenever faced with difficulty. But one of the most precious lessons I’ve learned in recent years is that this is not the essence of prayer (as God intended it). They are petitions, not too much different than the one’s people ask us to sign for any number of political or social causes.
My prayer for you (especially my children/family) is that in the midst this season in which our human need regularly jolts us to cry out for supernatural intervention all of us will graduate into a fuller, freer lifestyle of conversing with our Maker/Redeemer/Friend.
For that to happen we need to understand what God intended prayer to be. To understand that we need to embrace why/how He made us. He distinguished us from EVERY other being/entity in the universe by making us “in His image and likeness.” He illustrated what that should look like by daily walking with our first parents “in the cool of the evening” probably discussing their adventures and giving the tour-guide tips for the next day, etc.
I don’t think I’m oversimplifying the Message God left us in the Bible and the record of Jesus’ earthly life to say that EVERYTHING He has done was for the purpose of getting to live life with us. I can hear the longing in His voice when He appeals through the Psalmist in Psalm 32:9, “Do not be like the horse or like the mule, which have no understanding, which must be harnessed with bit and bridle, else they will not come near you.” In other words, He’s saying, “what do I have to do to get you to want to be around Me and have Me in your life?”
Well, my blog word count alarm is beeping. So much more to say. For now, “kids,” next time you pray for me, rather than telling Him what you want Him to do, how about asking Him what He’d like to do or what’s on His heart for us. Then, AND THIS WHOLE EXPERIMENT WILL GO NOWHERE unless you do this: STOP TALKING. I mean it. When you get to a place where “prayer” for you is more listening than talking, you’ll discover a whole new world. He can hardly wait!!
I’ll let my bride share the latest twist in the road:
Dear Family and Friends,
The oncologist called us yesterday morning to say he thought Dan was a good candidate for a bone marrow transplant. He referred us to a treatment center in Seattle which is the premier hospital for bone marrow transplants in the world. We have a consult with a dr. there next Fri., Aug. 2. We also got a call yesterday from the man who is working on getting Dan the new drug, and he said he thought the application process would be complete in the next 2-3 days. So we might have the medicine by next week.
I have been reminded again this week and comforted over and over by the verse in Ps. 139 which the Lord so clearly brought to my mind when we heard the news of Jeremiah’s death: “All the days ORDAINED for me were written in Your book when as yet there was none of them.” No disease or “weapon formed against us” can thwart the will and purposes of God!
We are grateful beyond words for all the prayers, all the love poured out upon us through all of you and the extended Body of Christ. What an incredibly good and far-reaching God has set in motion through the Gospel of Christ to create an eternal Family! My heart echoes Paul’s words: “Oh, the depth of the riches both of the wisdom and knowledge of God!”
Love to you all,
Rebecca
Ever wake up after getting some very unexpected, difficult news and find yourself shaking the fog from your head trying to remember if it was real or just a dream? Feeling that way today.
I’ve known for months that “something wasn’t right inside” but I had no idea how serious it was. The fill-in Oncologist (the lady I’ve been seeing since Nov. left last week on maternity leave) happens to be the head of the whole Provident Oncology program and is everything the former Dr. wasn’t -very informative, very concerned about the advanced stage of my disease, and very experienced with this rare disease.
He squeezed us in between other patients (so we didn’t have to wait till Wed) and spent 20+ minutes explaining how my Positive Myelofibrosis differed from cell-based cancers of the blood system. Common cancers are generally mutations of cells gone haywire and can often be remedied by wiping them out (chemo) and getting a fresh start. With my condition, the haywire units aren’t cells but genes that produce a fibre-ish stuff that surrounds the productive red/white/platelet cells in the bone marrow. And, in this case that fibre has decided to multiply mercilessly which meant there was no room for the blood-making cells to stay there. On top of that, the fibre essentially becomes a scar tissue, hardening the core of the bones and “killing” them.
After the Dr. attended to another patient he came back for another 20 min. to discuss “treatment” and prognosis. He mentioned the conventional treatment -(urea-active ingredient in fertilizer, terrorist bombs, etc -he didn’t actually mention this part, I got that from wikipedia) could be used to kill excess white blood cells in my spleen which should, in turn, diminish the size of the spleen which should, in turn, make more room for my stomach which should, in turn, mean I could eat more good food rich in calories. He seemed to think that the 15 lbs I’d lost in the last few weeks wasn’t going the right direction and that my body was devouring itself just trying to keep the remaining organs functioning. Oh, I forgot to mention that the spleen remembers how to make blood cells because that was it’s job in utero. So, since my bone marrow crowded out the factories, the spleen (and liver) took over besides doing their regular jobs. Dr. Lechner even said he’d give me a candy bar if he had one in his pocket -just to get me some calories. You see, following recommendations from others I’d restricted my diet to fruit and veggie drinks -lots of enzymes, no calories.
Back to the treatment: A new drug has been developed in the past 3-5 years that attempts to slow the scar tissue development, thus adding months to ones life. If I could qualify for that and afford it ($3000-$5000 per mo) they’d look into getting it for me. Thankfully, the team at Providence is very diligent to find financial aid for folks without insurance!
Well, the question everyone is asking, I asked. Finally. “So, doctor, do I have 3 weeks, 3 months or ? ?” He looked at me and said that he wouldn’t put it at 3 weeks but if things continue on the present course I probably don’t have 3-4 months before the disease will finish my last chapter on terra firma. Needless to say, that was sobering. Besides, I’ve felt SO WEAK for the past month, accompanied by constant pains and so unable to concentrate on anything for more than a few minutes, I wasn’t sure I’d want to hang around longer than that anyway.
But, the good news is that CALORIES (and prayer, to be sure) have come to the rescue and some good sugary treats after the Dr. appt. have all but eliminated the dizziness, pain, and foggy thinking. In spite of turning my abdomen into a war zone last night with the new urea medicine, I slept more solidly than I have in a week. I’ve been able to walk upright and spend long periods of time on the computer (i.e., this LONG blog).
So, bottom line: I’m going to die. But so are you. I just have the benefit of knowing roughly when so I can spend the next weeks on the most important things. Thanks for keeping our family in your prayers.
Lord willing, I’ll be keeping up with this blog in the days ahead.
THIS WAS WRITTEN AS THE FIRST ENTRY IN THIS BLOG SERIES BUT IT GOT HUNG UP IN THE EDITING LOOP. I INCLUDE IT HERE FOR INTRODUCTORY PURPOSES.
It would be premature to say that I’ve been diagnosed with Leukemia. Maybe by the end of the summer we’ll know for sure. It feels extremely strange to even suggest that the J Dan Small I always knew (active, productive, energized) is now facing a very different season of life. Mind you, I’ve always felt bad for folks diagnosed with CANCER I just never thought my name would be linked to it.
Needless to say, being laid up has given me more time for reflection than I’m used to. I’m feeling in my bones (literally) how fragile life is. And, with a wife, six children (some with spouses), and seven grandchildren, I feel like there are some things I’ve learned that I want to share with them.
Just a word about the Finally, then . . . title for my blog. I don’t mean for it to sound ominous. It’s somewhat tongue-in-cheek as I recall several places in the New Testament where the author invokes this “concluding statement” and then proceeds to write page after page. The fact is, we don’t know (most of us) when FINALLY will happen to our earthsuit. But, we don’t walk around with our head in the sand when symptoms appear suggesting major life-threatening conditions. So, this blog may last a few weeks, months, or years -as the Lord wills! Meanwhile, I’ll pass on some “concluding statements” you might find helpful as you run the race (or crawl the path).
Oh, and a word about HOME. I like how C. S. Lewis put it: “If we find ourselves with a desire that nothing in this world can satisfy, the most probable explanation is that we were made for another world.” I really like his use of the word DESIRE because I’m coming to believe that what we DESIRE is the most important thing about us! In fact, I believe that this whole world exists because of a DESIRE the Creator had.
So, I hope you can find a few bread crumbs* in all my blogaciousness!
jdansmall
Finally, then . . . 