I realized today (the day after the 2nd anniversary of our son’s (Jeremiah) murder in Kurdistan, that many of you don’t do facebook and wouldn’t have access to the many testimonials and comments that are such a blessing to us. So, I’ll attempt to embed some of those things here for your edification.
More memories . . .
mini-update
The appointment on Tuesday was “nothing to write home about” but here are the highlights:
- Blood counts are rising but not dramatically
- Will resume low dose of Urea to keep white cells from spiking
- We are exploring the possibility of clinical studies in the area that include decitabine
- I will move (slowly) toward the likelihood of a stem cell transplant
- My symptoms are present but not debilitating
- “come back in 2 weeks to see what blood counts are doing”
Pray for wisdom in knowing what direction to go with these various options.
Thanks,
jdansmall
PS Keep the Small clan in your prayers as we commemorate the 2nd anniversary of Jeremiah’s home-going on Saturday, March 1.
A New Diagnosis
Well, friends, after a long phone conversation with Dr. Mascaranhas and further review of my bloodwork going back to October of 2012, he is quite certain that I have CMML (Chronic MyeloMonocytic Leukemia) rather than Primary Myelofibrosis. So what, you ask? That would explain why the medications I was taking weren’t thoroughly helpful. A lot of the symptoms and components of this disease are similar to PMF with the only curative option being a stem cell transplant.
However, there is an FDA approved medication (Decitabine) that has been effective in putting the disease into remission in many CMML patients. The downside is that it doesn’t cure anything and probably has to be taken monthly for as long as I live (5 days in a row every month at an “infusion clinic.”) The doctor said that, over time, it does take its toll on the body and so although he has patients who have been on it for a decade, many don’t make it half that long. He would recommend that I take steps toward the stem cell (bone marrow) transplant. He believes that I am in the higher percentile of good candidates for success –if I can find a younger male donor who matches 10 for 10 on my tissue type.
While we pray for divine healing I will be seeing my local doctor next Tuesday to explore beginning the decitabine to see how my body responds. I’m pretty sure the same office has an infusion center so I won’t have to go elsewhere for it.
I’m anxious to find out what my cell counts are as my energy level has waned and I can feel turmoil in the abdomen that reminds me of the season last summer before I got on medication. My appetite is good and I’m sleeping okay just tire easily.
On another subject, I am in (hopefully) the final stages of production –working with a publisher/editor/layout specialist- of REFLECTIONS (devotional book of hymns and commentaries from Jeremiah’s writings.} It will be a hardback book and we’ll be able to make it available online as well as offer bulk discounts for churches or individuals that want 15 or more. I’m hopeful that they’ll be “in print” within a few weeks.
Thanks for casting all these cares with me before the Lord who cares so much for us! (1 Peter 5)
ENJOYING GOD PHILIPPIANS REmix
FOREWORD:
This is not inspired Scripture. It is a condensed (and sometimes amplified) paraphrase of Paul’s biblical letter to the Philippians. It is a humble attempt to stimulate a fresh discovery of the intriguing personality and plan of the God who created us to enjoy Him. As you read, let your imagination hear the excitement in His voice as He explains what He has in mind for you.
This letter is a message to you from God our Father and Jesus Christ our Lord. We, Paul and Timothy, have the privilege of serving Them by conveying to you Their incredible goodness and peace..
You are so precious to me and as I recall how fully you partnered with us in those early days in Philippi I can see how the One who began the work in you is faithfully completing what He started. And I pray that your love for Him and each other will be richer, fuller, and deeper as Jesus Himself empowers you. As that happens, your lives will be increasingly authentic and honoring to Him right up to the Day we join Him in Glory.
Don’t be troubled by my imprisonment, it’s only widening the reach of this marvelous Message! Prison guards and a steady stream of visitors are hearing the good news daily. Sure, some people are jealous of how God is using me so they try to outdo me in “preaching the Gospel.” No matter. At least the news is getting out far and wide –and I’m good with that!
My goal in life is to be a living example of how Christ can live through us no matter the circumstances. If I end up dying because of the Message –all the better! Through your prayers and the encouragement of Jesus in my spirit I find myself thoroughly content. And, I fully expect that He’s not finished with me here on earth. I ‘m quite sure we’ll see each other and I’ll get to help you grow in joyful trust.
No matter what happens to me I look forward to hearing great reports of how well you’re working together in spreading the Message. Don’t be distracted by those who oppose you –thank God that you, like me, are counted worthy not only to know the Truth but to suffer for Jesus as we engage in this battle for precious souls.
Again I say, it is vital that you work together in harmony with each other. Christ lives in you to encourage this kind of compassion. His Spirit interacts with you to stimulate deep partnership with others who enjoy His witness in their spirits. With that organic unity as a reality you won’t be motivated by pride or jealousy. Instead you’ll genuinely care more about other’s well-being than your own. You’ll value their point-of-view!
Christ has certainly shown us how this works! He, who was God by nature
- didn’t cling to all the privileges that go along with being God
- gladly took on the nature of a low slave
- reduced Himself to becoming a mortal human
- devoted Himself to obeying Another even to the point of dying
- died a humiliating death as a criminal
To show that this is the attitude and lifestyle God approves, He rewarded Christ with the highest honors possible. Since Jesus didn’t live for Himself, someday every human who has ever lived will recognize Him for who He is and give Him the honor He deserves.
You can do this! Because God is working inside you -giving you the desire and the opportunities to live out His great salvation (He’s in the process of saving you from your old self, you know).
Look at you! As your lives demonstrate more wholesomeness and less complaining you stand out like bright lights to show the way in a dark, diseased world. You’ve got the very life-giving words in your hands! Even if it costs me everything I’m indescribably happy to have been able to introduce you to this Message –and you should be even happier!
I do hope to send Timothy to you soon. That way he can give me a first-hand report about your progress. He’s a perfect example of the attitude I’ve been writing about. I don’t know anyone more interested in others. It seems most are too wrapped up in their own affairs and haven’t grasped what it means to know and serve Jesus Christ. Timothy, on the other hand, as you know, has tirelessly worked with me like a son with his father.
I, too, hope to come to you myself but for now I’m sending Epaphroditus back to you –another fellow-worker, fellow-soldier, and dear brother. He wants you to see that God has had mercy on him (and all of us for that matter) by healing him. He was extremely ill, having risked his life to do for me in person what you couldn’t do. Do show men like this the utmost respect!
So much to be thankful for! So many reasons to rejoice in the Lord! I don’t mind repeating myself –if for no other reason than to reinforce the Truth in you.
Stay on the alert against those who pervert the Truth! They are all about externals and keeping rules. As you know, our gospel is internal –our worship is from the inside, out. We aren’t relying on our own performance but are instead joyfully connected to Christ Jesus.
If this Message was about measuring up, I’d be way ahead of those deceivers anyway!
- I was born an insider (a Jew)
- I was circumcised on the eighth day
- I belonged to the tribe of Benjamin
- I kept the law like a Pharisee
- and I set out to destroy anyone who thought otherwise
- I challenge anyone to show me where I didn’t measure up to their standard
But, the good news isn’t about measuring up! Not only does all of that not impress God, it is gross rubbish. Think of it
- I personally know Jesus Christ
- my wholeness is not something I produced; God planted Jesus “wholeness” in me
Is it any wonder that I’m consumed with
- knowing Jesus more deeply
- personally experiencing resurrection life like He did
- suffering for Truth as He did
- one day “arriving” safely on the Other Side
No, I haven’t “arrived.” I’m in the process of getting a better handle on why Christ took hold of me. But I’m not looking back! Everything I am is about hearing and being ready for that final upward call –entering into the fullness of what it means to be in Christ.
You may not feel as strongly about this yet but you will! All that matters is that each of us use what He’s already given us to press on! Follow my lead! Follow anyone who’s running this way!
Don’t admire or envy those whose lives are consumed with the pleasures and perversions of this world! They abhor the message of the cross. Self-destruction is their destiny.
We, on the other hand, have already transferred our citizenship to Heaven. We’re on tip-toes watching for Jesus to call us Home. We’re dying to shed these wretched bodies in exchange for glory-built ones like He has. That will just be one part of His powerful re-shaping all things into His perfection.
Keep this perspective and you’ll stand strong! Know that I love you and ache to be with you again!
A few words in closing:
Euodius and Syntache, work out your differences in the spirit of humility I described above. All of you who worked so hard with me when I was there (Clement included) have your names written in the “book of life.” Help each other “get on the same page!”
- Find your deepest pleasure in the Lord and what He enjoys
- Gain a reputation for being gentle in spirit
- Live conscious of how near the Lord is (and how imminent is His return)
- Don’t let worry define you –pour out your concerns to God in earnest and thankful prayer
- Let God’s transcendent peace control your hearts and minds as you rest in His loving providence
- Meditate on Truth, virtuous and pure things, beautiful and praiseworthy realities
- Stay on course with all that I’ve taught and modeled for you
And the God of peace will be with you.
Your thoughtfulness and generosity toward me are a deep source of joy. I know you’ve been looking for ways to express your concern and only now had the means to do so. As I said earlier, I enjoy a deep and thorough inner-contentment in spite of circumstances! Whether I am prospering or poverty-stricken matters little –after all, I do what I do through the strength of the One who lives in me.
Mind you, I’m not discounting the importance of your financial support! Over and over you’ve been the most diligent about seeing that my needs were met. My joy, however, isn’t in the money I receive but in the reward you are going to receive for your selfless sacrifice.
My needs are met! The support you sent with Epaphroditus is like a rich perfume ascending to the Throne of God –and He loves it!
Every good thing we have is from Him and He’ll never run short! He will surely supply everything you need out of the rich “treasure-trove” that is Christ Jesus and we’ll never tire of blessing Him for being the generous, gracious, selfless God that He is.
Greet all the “Christ-ians”* there for me! Indeed, the saints here (especially the ones who belong to the emperor’s household) send their best wishes!
May the very grace of our Lord Jesus Christ be with your spirit.
*”Christ ians” was originally a derogatory name assigned Christ-followers by mocking world-lovers. It means “little-Christs.” Believers soon took it on as a valued identity badge!
Enjoying God -Ephesians REmix
FOREWORD:
This is not inspired Scripture. It is a condensed (and sometimes amplified) paraphrase of Paul’s biblical letter to the Ephesians. It is a humble attempt to stimulate a fresh discovery of the intriguing personality and plan of the God who created us to enjoy Him. As you read, let your imagination hear the excitement in His voice as He explains what He has in mind for you.
This letter is a message to you from Jesus Christ. I, Paul, was picked by God to write down His words and to extend His incredible goodness, kindness, and peace to you.
And what can I possibly say to bless this wonderful God who has, because it’s just the way He is, worked out in advance (long before He said, “Let there be light!”) a phenomenal plan all for our benefit? He didn’t leave anything out, right down to officially adopting us so that we are, in reality, His own children, loved, thought of, and cared for by Him every bit as much as is the second person of the Trinity (His son, Jesus). He wanted us to be forever convinced of and resting in His generous attitude toward us.
This complex plan He has kept mostly secret until now is no fairy tale. To make it happen cost His Son everything. It was His blood that rescued us from ourselves and, through forgiveness changed us completely.
And the plan isn’t just for us but someday everything in history will come together and find its place in relation to the Son. EVERYTHING! Then, as if rescuing us isn’t enough, He writes us –yes, you and me, into the story as co-heirs of it all along with the Son. Co-heirs! What’s His is ours!
Let me remind you, He is the only One in the universe who can plan, promise, and prepare something this staggering and make every detail turn out just the way He intended. And They had such a great time planning all this for us!
All you and I did was hear the message and trust that it was true. He’s done everything else. He gets all the credit for the outcome –He’s amazing! And, to make sure we know He’ll keep His word, He’s put His very SPIRIT into each of us who believed –a deposit guaranteeing the full deal in that coming day when everything “comes to a head.”
I’ve been thanking God and praying for you ever since I heard that you had embraced this message. Here’s what I keep asking:
- that our amazing God who loves to reveal Himself will do just that –giving you more and more insights into spiritual realities and His wonderful heart.
- that His Spirit will open your “inner-eyes” to what He has in store for you by way of inheritance so that your hope will soar.
- that you’ll begin to live in the incredible power He’s poured into you –the resurrection power used not only to raise Christ from death but, in fact, to put Him in charge of everything everywhere forever.
We’ve got to realize that Christ is so far beyond any so-called authority in this world and He has created a new organism through which He can express Himself –the Church, His “body” localized on earth even though He fills the whole universe.
What a change! All of us were
- completely disconnected from God in the core of our being (spirit)
- pulled along by a world-system that was disconnected from God
- actually under the influence of evil spirits we couldn’t see
- living like animals controlled by our selfish impulses and desires
- helplessly destined to an endless future estranged from our Maker.
but God who
- loves to show extravagant mercy
- is driven by love that always does what is best for the object of His love regardless of the cost to Himself
- wanted us to experience His kind of compassion that wasn’t based on our good performance.
gave us (yes, as a free gift we couldn’t possibly have earned)
- new life from the inside out –resurrection life just like He gave Christ
- adoption into the Royal Family right alongside His Son that will go on forever
- projects and opportunities to be extensions of His love to others while we are here on earth
Don’t forget, we have nothing to be proud of in and of ourselves! Everything we are and have we owe to God’s generous heart. All He asks of us is that we trust Him –living as though everything He says and does is good.
———–
For generations God had revealed Himself primarily to a particular group of people –the Jews. They had a special relationship with Him. The rest of mankind was “on the outside” and it was as if there was a wall between the two.
But, in this new era, made possible by what Christ accomplished on the cross, God has invited one and all to come to Him humbly, through the cross –not through a system of rules and regulations like the old covenant had.
In this new arrangement
- all of us (Jew or Gentile) are on equal footing
- we all have the same kind of access to God Himself because we all have the same Spirit
- God considers us all to be His children – we really are one big happy family
- in some mysterious way as we fit into each other’s lives we become a unique “temple” for God to fill with Himself
Even though God had this in mind all along it’s been hidden ever since creation. So I’m sure you can imagine how honored (and humbled) I am to get to be the one to share this “secret” with all of you! It’s a privilege I’m more than willing to suffer for –including this prison! The idea that all mankind can be equal partners in God’s promises and have access to and enjoy confident friendship with Him is so mind-boggling even the angels stand in awe of the complex wisdom of God. I’m speaking, of course of the ultimate mystery –the Church- where it all comes together.
What a God! What a “father’s heart!” Approaching a God like that I pray specifically for you . . .
- that each and every one of you will feel the presence and power of His Spirit deep inside your souls –strengthening, encouraging, revealing
- that the more you trust Him the more you’ll sense Him (Christ Himself) living in you
- that the more you (in happy fellowship with your Christian brothers and sisters) discover and live in His inexhaustible love the more you will experience yourselves being filled to overflowing with God Himself.
How can this possibly happen? Only by Him who by His power within us is able to do far more than we ever dare to ask or imagine. As this great plan for Jesus and the Church comes together all creation will stand in awe and wonder at God’s glorious perfection. For ever and ever, amen!
———–
Alright, so with all that in mind, let me tell you what God wants to do with your life. Remember, I am in prison because of this message. It does affect your lifestyle! And it should!! Imagine the honor and privilege of being personally related to the Supreme Being of the universe! What a calling! So . . .
1. Accept life with humility and patience, making allowances for each other because you love each other.
2. Believe that you share the same Spirit together with all who believe and you will inevitably be at peace with one another.
This kind of unity isn’t something you have to make happen. Look at everything we have in common:
- as I just mentioned, we all belong to one “body,” indwelt by one Spirit,
- we all experienced the same calling to the exact same hope.
- we have only one Lord, one faith, one baptism, one God, one Father of us all, who is the one over all, the one working through all and the one living in all.
True, there are differences among us –God has gifted different ones to do unique tasks. But all the “gifts” come from the same Person and are for the single purpose of helping the whole Church develop into a healthy unit –a “body” doing everything the “head” wants it to do (coordinated and functional). This body grows only as the relationships (joints) between the “body parts” are strong and faithfully supplying what each other needs.
3. Remember how bad the “old life” was
- cut off from the life of God
- desensitized in your conscience
- constantly looking for new ways to find pleasure no matter how perverted
4. Since you’ve heard Christ’s voice and He has helped you understand the Truth
- think of the old life like a filthy set of work-clothes you’ve taken off and thrown away
- see yourself wearing a perfectly clean outfit –made of the same material as Christ
- now you’re free from any need to deceive or lie –we’re all in this together
- you can let anger go instead of allowing the devil to stir things up
- you’ll be working hard to have money to give away rather than stealing
- your conversations can be peppered with encouragement instead of foolish, cutting remarks
- you cooperate with the Spirit who was given to you
- no more resentment, violence, bursts of anger, slander or malicious remarks -now you can be kind, gracious, and as forgiving toward others as God has been to you through Christ
- not sure what to do in some situation? imitate God the way children copy their fathers
- live out the generous, sacrificial love Christ extends to you in all your relationships
- you don’t have to be seduced by sexual immorality of any kind
- you no longer are obsessed with wishing you had what others had
- nastiness, silliness or flippancy are gone because you live with a sense of all you owe to God for His goodness to you
Don’t be fooled by the people around you who live “in the dark.” They think they’ve got the good life –immoral, dirty-minded and covetous all the while missing out on the truly good life. They are proud of getting away with things but their lives are empty and aimless. Instead of getting in on the glorious inheritance God planned they face eternity away from everything good. Don’t have anything to do with them or their darkness.
As you “live in the light” your lives will expose the emptiness of the old way of life. And, you’ll experience God’s pleasure as you live this way. God may even use your life as a wake-up call for those poor folks “sleeping in the dark.”
- now that you know why God made you, live purposefully
- use every minute wisely even when the going gets tough
- don’t drift, do what you know God wants done
- you’ve seen drunk people under the influence of alcohol, drink deeply of the Spirit so you’re under His influence
- sing for joy because of all God has done -make up songs just for God –sing them to Him!
- gratitude should define you
- fit in to one another –a healthy, mutual submission to each other
5. Wives, for you this new way of life means that you graciously take your place “under” your husbands the way the Church fits “under” Christ, looking for His direction. He’s responsible before God for your well-being so honor him in that role.
6. Husbands, that means you play the role of Christ –sacrificing yourself for your wife, devoted to her well-being, protecting, providing and enhancing her beauty –because that’s what Christ is doing right now for us, His “bride.” Love, true love, should govern your attitude toward your wife.
7. Children, you’ll demonstrate the new life by quickly and gladly obeying your parents. As you do this you show that you really believe the promise God made in the Ten Commandments: ‘Honor your father and your mother, that it may be well with you and that you may live long on the earth.’
8. Fathers, be careful as you train your children that you don’t over-correct them or confuse them with double standards. Carefully think through what they need to learn and faithfully explain God’s ways to them.
9. Employees, obey your bosses sincerely with a proper sense of respect and responsibility. Picture yourself working for Christ and work hard not so that you’ll be noticed by people around you but because you fully expect God to reward you.
10. Employers, be as conscientious and responsible towards those who serve you as you expect them to be towards you, neither misusing the power over others that has been put in your hands, nor forgetting that you are responsible yourselves to a heavenly Employer who makes no distinction between master and man.
———–
A few more words as I conclude this short letter:
Learn how to get your inner strength right from the Lord.
This is vital because we are in a fierce war, not just coasting into Heaven. We have a vicious enemy who is organized and determined to undermine every good thing God has planned. Yes, even though we can’t see them they are running much of what goes on in our world from their evil headquarters.
God has provided everything you need to take your stand against this unseen power. Check this list and don’t skip over any piece. Wear them like bullet-proof armor.
- Integrity –governed by honesty in all your words and actions
- Right living –doing the right thing even when no one is watching
- Peace –extending peace/reconciliation wherever you go, living out of the inner peace He gives you
- Trust –leaning fully on the promise of God’s salvation and all that comes with it
- Scripture –immerse yourself in His Word so you’ve got His ideas and His authority
- Trust –quenching the enemy’s taunts with your confidence that God is good
- Prayer –alert and persistent in lifting up all who are in this battle.
In closing I ask that you pray for me. I want to be fearless and faithful in sharing the good news even while I’m in chains.
BENEDICTION:
God the Father and the Lord Jesus send their peace and love.
God’s amazing grace flows in all those who sincerely love our Lord Jesus Christ*.
*this is, in fact, the ultimate reason God created the universe and put this marvelous plan together –to give us the pleasure of participating in the “love-community” that was the Godhead from all eternity.
Happy Valentine!
For the past 20 or more years we’ve made Valentine’s Day our family “gift-exchange” celebration (instead of doing it at Christmas). We haven’t always been able to do it on the 14th but it’s been a fun tradition.
As it turns out, this year I get to plan a romantic Valentine’s escape just with my bride of 37+ years!! And not just anywhere! We’re going to New York City. And the Metropolitan Opera.
I haven’t been the greatest Romeo so I’m really thankful I get this chance to “make up” for years of neglect!!
Yes, I’m scheduled for a pre-exam with the doctor who heads up the clinical trial on Tuesday, Feb 11. If all goes well I’ll be having a thorough exam (biopsy, ekg, bloodwork, etc) on the 13th. If all goes well with that, I’ll be a Panobinostat guinea pig hoping to prove that this new medication CURES primary myelofibrosis.
Meanwhile, I’m so grateful to be free of pain in the spleen. I have had to start a new series of antibiotic for a cough that borders on pneumonia. I’m also able to get in some computer work and administrative support at the Refuge!! What a change!
Enjoying LIFE!
J. Dan
I desire to depart and be with Christ, which is far better
Nevertheless to remain in the flesh is more needful for you. Philippians 1
At the risk of making you dizzy on the roller coaster of my health updates, I am pleased to report that over the past two weeks a) my white blood cell count has dropped from 265,000 to 16,000. (normal is around 10,000); b) I have been completely free of pain; c) my appetite has steadily increased; d) I am able to spend 6+ hours a day thinking, writing, consulting.
And, we’re going to New York (early Feb). The doctor there is mystified by my new improvements and wants to see me in person before officially signing me on to the Prime study –part of the evaluation will include another bone marrow biopsy which may reveal that the system is starting to work again (only attributable to a miracle). It may not, but, I can’t imagine why I feel better today than I have for eight months.
So, pray with thanksgiving today!
J Dan Small
Every word You give me is a miracle word.
“How can I help but obey?” Psalm 119:129
When you treat Scripture as living “miracle words” it speaks volumes!
It is January 2, 2014 in this part of the world and time for another update on my health even though I may have to send out another in a few days.
In the days leading up to Christmas I experienced unprecedented pain in my spleen which, at times, couldn’t be covered with pain meds. That led me to stopping all my meds to see if they were complicating my symptoms. Whether coincidence or not, the next day my spleen pain ended completely (and has not returned since Dec 18).
That was good news to me –I had despaired of life more than once in the throes of that pain. However, the days following provided a different challenge –nausea. I couldn’t eat and proceeded to lose nearly ten pounds in 5 days. By Sunday (22nd) I was extremely weak and had developed a fever. That afternoon we went to ER.
We learned several things: 1. Without any meds my white cell count had climbed to 265,000 (normal is 3-11,000) so I was put back on one med for that. 2. Chest x-rays revealed that the spleen had expanded behind the lung and collapsed ½ of it so I’m breathing with ½ capacity. 3. Fluid in that lung might be early signs of pneumonia so they prescribed an antibiotic.
I was released in time for us to scurry up to the airport to pick up Keren and Moriah. The two weeks since have flown by with the joyful chaos of family coming together (at one time 19 of us at the table) as well as visits from most of my siblings and some friends.
On New Year’s Eve I did get an email from Mt. Sinai Hospital in NYC asking if I planned to be part of the February clinical study group. I responded with a brief summary of my recent health challenges and the lead doctor responded with serious concerns about the developments. He has asked me to send the lab work from the ER trip and call him tomorrow. He is not sure that I am now in good enough health to qualify for the program. So, we’ll see what the Lord has in mind.
I am reminded that I have outlived the initial 3-mo. prognosis, that every day is a gift, and that opportunities to affirm, bless and encourage won’t last forever so I should be diligent to make the most of conversations.
Only the Lord knows how much your prayers have carried me through. I am humbled by how many care about this journey and I’m sure you always include Rebecca in your prayers as these long days and steady demands of hospitality take their toll.
Psalm 90:12 “Teach us to number our days that we may gain a heart of wisdom.”
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