Category / Dan’s Health Update

by jdansmall

no news is . . .

assumed to be “good news.”

In this case, however, I have to admit to dragging my feet on sending out a current health update.  Really, my strength and activity level for the month we were on our trip east was remarkable.  Well, yes, that tooth did cause fits early on but a dentist friend in Franklin, TN got me on some antibiotics that eventually eased the pressure -then he performed root-canal magic on it after Thanksgiving.

I did start noticing an increase in abdominal pain the last week of our trip and by the time we got home (a week ago) I was taking paid meds pretty much 24/7.  A blood test this past Monday put in black and white what my body had been complaining about -apparently all the inhibing/suppressing meds I was taking have failed and my white blood cell count was over 150,000 which is double what it was at it’s worst and is about 140,000 above normal.  Primary Myelofibrosis is, after all, in the “myelo-proliferative” category which means that the prime attribute is that my body (unnecessarily) causes one or more blood cell to go bananas.  The doctor just looked at us and said, “I’m sure sorry.”

So, I’m horizontal 98% of the time (thankful for memory foam and air-adjustable mattress) and have decided to stop the meds.  We’ll try some vitamin therapy for a while and see what that does for me.

I am still, theoretically, in line to participate in a clinical trial at Mt. Sinai Hospital in NYC in mid-February, but this sudden decline in my condition makes that prospect questionable from both ends.

It’s been encouraging to receive Christmas cards with more than “Joy to the World” in them.  Several have reminded us of the promises of Romans 5, Gal 6, and one that I’m holding onto for dear life: “our momentary, light afflictions are earning for us an eternal WEIGHT of glory.” 2 Cor. 4

Thanks for upholding the family in your prayers -it can’t be easy for them to watch this painful, slow decline.

Looking for that NEW BODY!

J Dan Small

 

by jdansmall

New HOPE!

After many weeks of no news, I write today asking for prayer that this new door might open for me.  In a roundabout way I learned of research being done at Mt. Sinai hospital in NYC.  Early reports are VERY encouraging for folks like me who have had no curative prospect for myelofibrosis.

I have had email contact with the department (Dr. Hoffman) and sent medical records -now I await word from them inviting me to come in for a consultation.

Meanwhile, we are firming up plans for a trip east starting Nov 10 in Yakima, WA.  We are heading to Sevierville, TN for the National Bible Bee in which Tirzah is competing.  She’s nearly finished memorizing some 800 verses of Scripture and doing an in-depth study of 1 John and Ephesians for the competition.  Lot’s of hours of review and pop quizzes from her folks over the next few weeks!

Some dear friends have made their van available to us for the trip and my body seems “up for the challenge.”  We’ll include a mini-reunion with Rebecca’s relatives for Thanksgiving and maybe end up heading east to NY after that if Mt. Sinai is ready for me.

Here’s a link to the article that describes what’s happening at Mt. Sinai: http://blog.mountsinai.org/blog/physicians-identify-successful-drug-for-myelofibrosis/

Thanks for praying,

J. Dan Small

by jdansmall

Small Update

Many have waited patiently through the month of September for an update on my health -I haven’t written much because there wasn’t really any news.  In general, my energy level and discomfort level have remained the same but blood tests and check-ups reveal that the spleen is growing and white-cell count is still up over 80,000.  The Dr is putting me back on the first med (along with the one I’ve been taking) to see if it will push back those symptoms.

I am able to function adequately from a semi-reclined position so I’ve made some progress on writing projects.

Naturally, the question I’m asked most often is, “how are you feeling?”  To be brutally honest, I think I can relate (emotionally) to someone who has been put on death row and told that the execution may be imminent but they won’t know until “they come to get you.”  I’m sure that’s unhealthy “negative think” and I don’t engage in it at a conscious level unless I’m being asked to make decisions re future activities -or responding to someone who’s just asked me how I’m doing.  I suppose I could be evasive and say, “better than I deserve.”

In another fit of transparency I’ll admit to occasional bouts with enemy “arrows.”  I was reminded the other day of Martin Luther picking up his ink jar and throwing it “at the devil” who was oppressing him.

Mind you, I don’t share those two paragraphs in hopes that my readers will inundate me with good counsel -it may be one of those times that the less you say and the more you pray, the better off we’ll be!

Speaking of future activities, many of you don’t know that Tirzah (our almost 18 yr old) qualified for the National Bible Bee contest in Tennessee from Nov 20-23.  Her preparation is rigorous: nearly 800 randomly assigned Bible verses to memorize and a thorough, inductive, self-developed study of the book of Ephesians.  Upwards of 120 contestants from around the nation will be vying for the top prize of $100,000.  Second place will have to settle for $50,000.  And, of course, the gov’t will probably get half of it.

So, we’re seriously contemplating a family trip starting in about a month.  If my health holds out, we’d drive and hope to swing thru Texas and the midwest (coming and going or vice versa) and maybe pull off a Sheldrake Family Thanksgiving Reunion (Rebecca’s family) along the way.

We’re upheld by a faithful support team and thank God often for each of you!

jdansmall

Thanks, Mikki Cowles Photography, for making it look like we've "got it together!"

Thanks, Mikki Cowles Photography, for making it look like we’ve “got it together!”

 

 

by jdansmall

Taking attendance

Few of my readers will be able to relate to this but, in my elementary years growing up in a small Upper Michigan town, every morning school classes began with the routine of “taking attendance.”  This amounted to the teacher opening her ledger and, alphabetically, reading the name of each student at which time the pupil was to respond with “present.”  Occasionally we would vary the response by saying, “here” but NEVER would we get away with a mere grunt or disrespectful, “yah.”

So, here I am on the morning of my 59th birthday.  Most years I’ve nonchalantly coasted through the annual marker with a casual nod or “uh huh.”  This year I’m “present.”  I’ve been studying the attributes of whole-heartedness trying to uncover what makes some people seem fully alive while others pass through their days with a distracted grunt acknowledging that, yes, they’re still breathing, but not sure why.

One author describes whole-heartedness as “the capacity to give oneself thoroughly to the present moment.”  I can picture Jesus being like that.  As I read accounts of His busy days there are glimpses into “random” moments when a child or hurting stranger crossed His path and, in that moment, experienced the full attention of Someone who was very interested in them.

By contrast, when I am self-absorbed or occupied in a project, the most you should expect from me is a glance or, perhaps, slightly agitated acquiescence to whatever it is that you want.  My body may happen to be “present” but my heart is somewhere else.

How to become whole-heartedly present in any given moment?  I think, for me, it started with discovering (and choosing to live as though it was really true) that the indwelling Presence was, in fact, PRESENT -ready, any and every moment to connect consciously with me in conversation, comfort, counsel, etc.

As such, I began to realize that “getting stuff done” wasn’t the highest priority to Him.  In fact, He rather insisted that I stop performing and producing at least one full day a week so we could just be together.  I’ve never been very good at living that way -my identity (& income) has always been too wrapped up in accomplishments.

Sadly, I ended up barely noticing life passing me by -until (in my case) He gave me a heads up that life (as I’ve known it) may be coming to an end sooner than I thought.  When I was first diagnosed with Primary Myelofibrosis (mid-July) and told that I may only have a few months to live, all my projected plans and priorities imploded.

Then, when it appeared that a bone marrow transplant could likely correct the problem and I might go on another 10-20 years, I dusted off some of the projects and felt as though I’d “dodged a bullet.”

Then, last week, when we discovered that, not only did I not have a sibling match for stem cells but that the success rate for such a procedure was closer to 15% given my symptoms, the “bullet” was still coming at me.

Yes, I’m benefiting from the prayers and meds  -able to be up and about but not too active, but I also feel the wear and tear of my over-worked vital organs and know that each hour is a gift.

But perhaps the greatest “gift” I’ll experience today is that of enjoying PRESENCE.  God’s presence, of course, but also my ability to be more fully present with my wife, children, grandchildren, and guests.  I can only wish for you this gift -minus the circumstances that enabled me to receive it so whole-heartedly!

Happy birthday to me!

by jdansmall

Decisions, decisions

As it’s been a couple of weeks since I provided any update, here’s the latest:

During the first few weeks of this illness I was extremely weak, my bones felt like I had a fever but I didn’t, I had almost no appetite and was losing weight fast.  If I tried to walk up the stairs I was out of breath half-way up and the only position for relief from internal pain was flat on my back.

Jakafi is a medication developed specifically for myelofibrosis and as as I began taking it the aforementioned symptoms gradually diminished.   Over the past week, however, some of the symptoms have returned limiting my mobility a little.

Meanwhile, it’s been a treat to have Sarah, Jon & their kids along with Keren & Moriah here this week.  We’re planning family pictures and a birthday celebration later in the week.  Thanks to modern technology we can get pics of each family when it is convenient for them and composite them together into a classy portrait (my birthday gift to the family).

Blood tests continue to indicate that my system is holding its own and, with increased appetite, I’m slowly gaining back some weight.   All the doctors agree that I should continue for 2-3 more months on this before attempting a bone marrow transplant.  So, that’s the plan.

We’ve been in contact with a large hospital in Vellore, India (started in the 1800’s by Ida Scudder) which has a marvelous mission statement and outstanding expertise in bone marrow transplants.  You might like to read about it at http://en.wikipedia.org/wiki/Christian_Medical_College_%26_Hospital.  Their price is about 1/10th the cost to have it done here in the States.

On the natural front I continue to supplement/reinforce the immune system with a variety of “potions.”  On the spiritual front I am the beneficiary of heart-felt prayers lifted up on my behalf -and we continue to listen for the Lord’s mind and purpose in this unusual season.

So, your prayers for wisdom are much appreciated.   Many have given sacrificially to help us through the financial challenges and we don’t anticipate needing more than will be reimbursed by http://samaritanministries.org/ (our insurance alternative) if we do go overseas.

Some of my waking hours have been spent rebuilding our website.  It’s not nearly done but you can sneak a peak if you’d like:  www.familyreclamationproject.com.

by jdansmall

Corporate Greed . . . so-called health care

This first appeared on my Facebook page but I want to expand the audience.

AMERICA will collapse under the weight of TOXIC GREED!
Move back from your computer for a moment because I’m about to explode with a rant that could overheat your system.
Since I have been self-employed all my life and have donated many years to non-profit service we have not had access (funds) to commercial health insurance. Instead, we joined a Christian needs-sharing group (Samaritan Ministries) and send $370 each month to fellow-Christians who had health-related expenses. This has been most rewarding and ALWAYS sufficient for the major (not catastrophic) expenses we’ve encountered along the way.  They also have an add-on optional program for those who want catastrophic coverage but we didn’t think we’d need it.
So, now that I find myself in need of a life-saving bone marrow transplant, we are meeting the “enemy” and finding that it is our out-of-control medical industry.
What do I mean?
  • Example A: We went for a 75 minute consultation with a physician (Dr. Deeg) at SCCA (Fred Hutchinson Cancer Center) to hear what they could do for me. Later I discovered everything we learned from him in a 15 minute youtube lecture he gave a year ago. Since we didn’t have insurance we had to give a $600 deposit before he would even talk to us, then, today we receive an additional bill for $700.80. No labs, no exam, just words.
  • Example B: the financial coordinator met us after the Dr. left to say that we would need to provide $600,000 up front to have the procedure -and, “no, that would not include 4 months housing, transportation, meals” which we’d need to line up so we’re close by for follow-up testing.
  • CONTRAST that with the $43,000 price tag we’ve gotten from the top transplant physician in India. A price which includes all testing, procedures, housing for 2, and meals. Oh, that’s right, we’d need to pay for our flights ($2800 for Rebecca and myself roundtrip).
  • Example C: not wanting to commit to having it done at SCCA, I still wanted to get the necessary typing-test to find out which of my siblings is the MATCH for my DNA. “Yes, we can start that process for you,” the sweet receptionist at SCCA says. “Since you don’t have insurance we’d need $6000 per sibling plus yourself… up front.” ($30,000 -to help you with the math).
  • CONTRAST that with a private internationally-acclaimed bone marrow testing company (located down the road in Portland) who is doing it for $1800. Total. For all 5 of us. (www.bonemarrowtest.com)
Most of you reading this (if you’re still with me) probably have insurance of some kind so you never face these realities. I just thought it’d be good for you to know why the system collapsed (when it does).
Oh, one more thing -not a rant but a rave: In stark contrast to this is the way the team at Providence Hospital/Oncology have treated us. Since they’re still ostensibly a private, Catholic-owned medical provider, have as their mission (posted boldly on the walls of their offices): “As People of Providence, we reveal God’s love for all, especially the poor and vulnerable, through our compassionate service.”
They, as well as those who serve with them (SouthSound Radiology, Incyte Labs, Cellnetix) have given us a phenomenal break since our income for the past couple of years has been “below the poverty level.” They are among the few remaining caregivers who do what they do “under God.” Unfortunately, they watch nervously as their independence is at risk with upcoming legislative regulations.
What can we do? As for me and my house, we will boycott and broadcast these abuses. Remember, “the only thing necessary for evil to triumph is for good men (and women) to do nothing.”
by jdansmall

What is life worth?

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)

by jdansmall

Prayin’ for you . . .

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!!

by jdansmall

Addendum

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