Remembering A Year Ago Today

It's hard to believe.  It seems at once like it was only a month ago and also like 10 years ago.  But exactly one year ago on this day (the 5th as I write this), Daniel went in for a scheduled doctor visit to a specialist at Riley Hospital for Children.  He'd been having a lot of awful symptoms for a month or more and I had had it with waiting around on doctors to take us seriously.  I let this doctor have an ear full of my frustration and she patiently listened to me and, thankfully, took me seriously.  She ordered an immediate blood test and called me back within a few hours after I'd returned to work.  She said she'd taken the liberty of scheduling another appointment for us the following morning for a bone marrow biopsy.  I was happy she was being so proactive.  Little did I know what she suspected.

The next day, Friday 1/6/2012, the biopsy test came back positive for leukemia and our entire world stopped cold.  My first blog entry here tells the story, titled, "Jan 6, 2012 - A Date of Infamy".  What a year it's been.  We're still trying to put together our "Christmas Letter".  I guess it's a "New Year's Letter" now, but it'll be out soon I promise.  (I'll post it here as well).

Tonight as I tucked Daniel into bed, I'm still checking his temperature, asking how he feels, and find myself fighting the urge to panic at every cough, or ache,  or decision to go to bed early.  I do my best never to show TOO much concern and to temper it with a few "manly" father-to-son responses such as: "Ahh - suck it up boy", or "Walk it off - you'll be fine".  But if I'm candid with myself (and you: my dear blog readers), the truth is it's a constant battle with anxiety and fear.  Watching the Kellers go through the hell they endured has certainly had an enormous effect on me as well.

This year has been filled with MANY lessons - most of which I'm probably not even aware of.  But if I were to name the single, greatest, most persistent challenge that's plagued me (and I presume Andrea as well, but I'll only speak for myself here) it's been the control of FEAR. 

Fear is the enemy.  Fear is a sin.  Fear is our mind saying to God, "I don't trust You with the future. Deep down I think You either can't or won't do what's best for me".  The Bible has a great deal to say about Fear.  It is insidious, and must be stopped at its very onset, for the longer it continues, the tighter its hold becomes on your soul ... I know.  When the Word instructs us to "take every thought captive unto the obedience of Christ" (2 Cor 10:5) it's providing us with very specific and practical instructions for dealing with such thoughts as Fear and Anxiety that can ensnare us.  I'm not here to tell you I've become good at this.  I haven't.  But I'm better than I was a year ago today and I thank God for these lessons along the way. 

That following day, Jan 6th, was easily one of the worst days of my life.  I'm not sure it tops the list, but it's in the top 3 for sure!  Yet God was with us every step of the way and He remains with us today.  As we settle in to sleep tonight, our lives are no more or less secure than they have been on any other day.  Our sense of "security" and "normalcy" is a complete illusion except insofar as it is based in the faith that God controls all things.  Some of what God brings to us we enjoy, some we do not, but we can be sure ... we MUST be sure ... "that ALL things work together for good" (Rom 8:28) when we give our lives to Him.  This year has seemed like one gigantic test of whether we truly believe that to be true.  Some days have been better than others to be sure.  But we do know, that only when we rest in Him is there any real and lasting peace, joy, comfort, rest, or security. Gradually, I'm learning to do this.  Learning to trust God in ALL things - even with the life of my only son - is among the most challenging tasks I've ever been given, yet it is also clearly among the most important and eternally significant lessons any of us can learn ... ever.

We will be "celebrating" the completion of the first and, we pray, the hardest year of Daniel's chemotherapy on Monday.  It's been a difficult road, but we've been amazingly, astoundingly blessed over and over and over by God's grace, His providence, His comfort, and His love directly to us as well as through so many of His wonderful people who have gathered around us.  We thank you all and we thank God for all He has done, and all He continues to do.

Grace and peace to all;

- Tim -

For Joey

For Joey;

All of us know grief.  This world and this life are filled with it – for some more than others it seems but we have all been touched by it in some way.  I have lost immediate family members and been close to many others who have as well – even just this past weekend.  I know the grief that feels like a 200 pound weight on your chest and wrap your soul in a darkness that seems both unbearable and inescapable - but I don’t know what it’s like to lose a child. 

Unfortunately, I have imagined it a thousand times - probably more like two thousand actually, but I'm not counting.  About a year or so after my son Daniel was born, I began having nightmares about losing him – not just here and there but every night!  They were terrible, graphic, vivid dreams about not being able to save my son and having to watch him die.  I would wake up each morning in a cold sweat and shaking from having experienced some new and horrifying way of losing my son that was somehow my fault.  Every gray hair I currently have appeared over the next few years, not as a result of having a son – being a parent – but as a direct result of those dreams of losing him I am convinced.  There was a lot going on spiritually that I won’t take the time to go into here, but let’s just say the warfare was intense, and I now have a lot of gray hairs to prove it.

Until those dreams started, I had never experienced any fear, horror, or grief like I did during those thoughts and dreams.  For the several years that it lasted, it was the darkest and most difficult period of my life … until January 2012 … when Daniel was diagnosed with cancer.  I tried to describe a bit of what I was feeling in those early blog posts.  It had been awhile since I had finally overcome the bulk of the nightmares, but suddenly every one of them came back home to roost in that moment sitting in the recovery room with the doctor and the test results.  The initial estimates were for a 65% chance of “successful treatment”.  My ears roared, my vision closed in, my heart pounded, my stomach flipped, my throat closed up, my soul screamed in agony, and the world stopped turning

Though there were several ups and downs in the early days of his diagnosis and treatment, we eventually discovered that his form of leukemia was in fact one with a much higher (around 90-95%) success rate and the clouds began to clear a little.  Yet 2012 has been a year filled with constant wrestling against fear and struggling to hold on to faith and learning to trust God for every single second.  I watched my mom die a long and painful death from cancer the year I graduated college.  I've watched aunts, uncles, cousins, my mother-in-law go through it - some successfully, some not.  My wife Andrea was diagnosed with leukemia in 2010 and then my only son Daniel in 2012.

I hate cancer!

As my world began to spin again - in an entirely new direction - one filled with oncologists and hematologists and a new language of medical terms and procedures and protocols and charts - I found myself immersed again in the world of cancer and the people affected by it.

It was then that I met the Kellers and their son Joey.  As it happened, Daniel and Andrea had already known Joey and Elizabeth for some months.  Daniel and Joey had shared classes together at our homeschool co-op and Andrea knew Elizabeth from there as well.  As we began to cross paths more often at the hospital - both as in-patients and at the out-patient clinic, I got to know Joey and Elizabeth and eventually Nick, Joey's father.  Nick and I hit it off immediately.  We recognized in one another the same depth of passion, compassion, and willingness to do anything to save the lives of our sons.  Andrea and Elizabeth shared the same kind of connection as mothers.

I'll not tell the much more of the story here except to say that the four of us discovered in one another not only a deep love for God and His Word, but also a shared journey ... a quest ... to learn all we could about how to appropriate God's supernatural healing power for the sake of our families.  Though we didn't often get a chance to talk face-to-face, when we did we often commented on each other's blog posts, shared experiences, compared notes about what other people said and did and their comments, etc.  Without really knowing one another that well, we became very close in a way that I believe only God can orchestrate.

As late Summer and early Fall of 2012 began, Joey began to have serious problems again.  We prayed and prayed and prayed.  Joey, Nick, and Elizabeth and all they were going through grabbed my heart and wouldn't let go.  When Joey started having seizures in late September, I organized on-line round-the-clock prayer vigils for him and we saw truly amazing - I believe "miraculous" - results.  Dozens if not hundreds of people and families and prayer groups were praying for Joey constantly.  My own family - the 3 of us - were praying together with fervency and regularity like never before.  And for awhile, Joey rallied and we hoped and prayed hard and believed that God would grant our thousands upon thousands of requests, and spare Joey's life from this awful disease.

But in the end, it was not to be.  If human beings could, by force of will, influence the health of another, or if there were some inherent power in prayer itself, Joey would most certainly still be with us today.  But prayer is never about changing God's mind or somehow "forcing" God's will to bend to our own - though many seem to think this is so.  The Word tells us to ask God for what we want and to "pray believing" that He will grant us what we ask, but it is abundantly clear that God is sovereign and perfect in His wisdom and knowledge and power as well as his grace and love.  The Word is clear that God always does what is right and best and good, whether we understand it or not.  In this case, it is now clear that God's will was to "graduate" Joey from this life to his reward far sooner than we all would have liked.  And as absolutely heart-wrenching as it was to lose Joey, all those of us who know the Lord are, despite the grief, immeasurably happy for Joey and the perfect, "ultimate" healing that God granted him.  Shortly after the news of his loss, I found a picture through which God spoke directly to my heart and brought me some measure of peace for Joey.  Actually, I found several, but this one in particular ministered to me powerfully and continues to do so.  I still cannot look at it without breaking down.  It allowed me to "release" him into the arms of my Lord and to find some measure of peace and even joy for Joey's sake.

However, with that said, I can also state that this has been one of the 2 or 3 worst weeks of my entire life.  Because although I can actually bring myself to be happy for Joey, my heart is tied so very deeply to Nick and Elizabeth and their parents that I have felt utterly devastated - crushed under the weight of their loss and the future they must move into without their precious little boy.  I'd like to say I cannot imagine what they're going through, but the fact is, I have imagined it - a thousand times.  And yet I know that even my worst nightmares can never compare to the reality our friends are going through.  After all, I woke up from every nightmare I ever had.  Yet there is such a deep connection to their journey, their faith, their struggles, and their loss, that I was barely able to function for days afterward and still find myself in tears as often as not.  I wish there were something - anything - I could do to ease their pain, to share the load of their burden, or to bring comfort to them in these dark hours.  But only God can do that, and so I continue to pray ... for their comfort, peace, strength, courage, and faith to remain strong.  We remain committed to the Kellers and their parents to stand with them, pray for them, and serve them in any way that we might be able.  And though I realize that they will never fully recover from being separated from their son so early and in such a terrible fashion, we do pray that the Lord will bind up their broken hearts, wipe away their tears, strengthen their marriage and their relationship to Him, and help them to find a positive way to honor Joey's memory and legacy until they are reunited with him again.

Were Our Prayers in Vain?
No.  Absolutely not.  No prayer of honest concern and desire to help another is ever given in vain.  And no prayer by one who belongs to the Lord goes unheard.  Though I do remain confused about some of the things I had believed that I and others (including Joey Himself) heard about God's intent to heal Joey back to health in this world, I also believe that our prayers were effective in many ways in God's plan.  Without question (in my mind) we saw God answer our prayers for Joey MANY times over the past year (and many others have been praying for Joey much longer than that).  We saw cancer disappear from his MRI scans entirely. We saw him healed from the seizures despite the medical staff stating that they didn't know what was causing it and didn't know what to do for him.  We saw him rally back multiple times in multiple ways over the course of these last several months and I believe that in each of those cases, God was working through the many, many prayers of the faithful being offered on Joey's behalf.  I know that I personally felt a strong burden for prayer and was, like several others, awakened even during the night to pray for Joey and his parents during particularly difficult times.  For me personally, it really wasn't until the last few days that I even had any trouble praying with faith that God was going to continue to heal Joey and keep him with us.  I don't know or understand what changed at the end. Perhaps someday we will, perhaps not.  But I am tremendously happy and blessed to have had the privilege of having been burdened for Joey these past several months and to have put in the many hours of prayer on his behalf.  I believe every one of the prayers offered by members of Team Joey were effective and used to Joey's benefit and God's glory.  And ultimately, God provided Joey with a perfect healing from his suffering and disease in a way he could never have enjoyed in this life.

How I Knew, And Will Remember Joey:
I regret that I never knew Joey when he was healthy.  The only images I have of him are without any hair and most often in a hospital bed or wheel chair.  But far stronger than those images of his illness, are the impressions I have of his maturity, especially spiritually.  Through my own direct experience as well as through conversations with Nick and Elizabeth and their parents, and through Nick's various CaringBridge and Facebook posts, I came to realize that Joey has a wisdom and maturity WAY beyond his years.  He has developed a profoundly deep and personal love for Jesus and it was frequently Joey who brought encouragement, strength, and balance to conversations and worries of others around him - even his own parents.  In Nick's CaringBridge post announcing Joey's passing, he made the statement, "I can only hope to run a race as strong, and focused, and effective as you. In spiritual terms, I look up to you."  I know he meant every word of it because he said the same thing to me on more than one occasion.  And even for as short a time as I've known Joey, I feel the same way.  Joey is for me and for so very many others, a model of strength, wisdom, and maturity in many ways.

We know that God uses adversity in our lives to mold and shape us - as a "refining fire" through which we are purified and mettle tested.  It is my opinion that the sheer volume of adversity that Joey went through in his short time on this planet was probably sufficient, in God's hands, to accomplish all the work in him so often takes God an entire lifetime to accomplish in most of the rest of us.  Though I initially thought of Joey's passing as being a race "cut short", further reflection on who he is and how he behaved caused me to think that, perhaps, he just finished his race that much faster than the rest of us!  Certainly he has finished his race well and will receive a reward for this valiant fight that most of the rest of us will only be able to look upon in awe.  I am confident that God will continue to work through Joey's legacy in this life for many years to come and will bless countless other children through it.

Though Joey barely knew me, he has already had an enormous impact on myself and my family in our prayer lives, my understanding and experience with prayer and healing, and even our conversations and experience with cancer and hospitals ... an area that we will continue to look to his example in the months and years ahead of us.

As this Thanksgiving Day draws to a close, I realize despite the enormous grief I have been under this week, how very thankful I am to know Joey, his parents, his grandparents, and so many of the other friends from around the country and around the world that comprise "Team Joey".  And though in my own limited wisdom, I would so much rather have had him around with us for much, MUCH longer, I am grateful that I will carry these memories of him him as a great soul - someone who at barely 9 years of age, ran the race so as to win - and won.  And one day soon, I'll see him again in Glory, as a man, full of life and health and unencumbered by the trials he faced in this world.  If I can finish even half as strong as Joey Keller, I'll be a happy man when I meet my Lord face-to-face.

- Tim -

Remembering September 11, 2001

On Sept 11, 2001, I was on a business trip to Patuxent River Naval Air Station near Washington DC. We'd flown into DC and driven the 50-60 miles south to PAX with several team members in 2 cars. We were well into the day's meetings when the highest ranking officers (Navy captains) were called out of the meetings briefly after the first plane hit.  There were a few whispers about what had happened but we didn't hear much.  We were shocked at the tragedy of what was being circulated, but didn't think too much about it.  I remember being instantly reminded of the B-25 that hit the Empire State Building in heavy fog in the 40s, but this was a perfectly clear day.  Very strange.  The meeting continued.  Then there was a bigger commotion and the officers were pulled out again.  The meeting was halted for 15 minutes, and we all gathered around an officer with a laptop and internet connection to see what CNN had to say.  Reports were sketchy and conflicting, but the 2nd plane had hit the 2nd tower.  Someone had captured the event on video and they it was being played over and over and over and over ...

I walked outside and made a cell phone call back to the guys at the office to see if they had any more / better news as to what was happening.  They were gathered in the conference room watching it on TV, but didn't know any more than we did.  Then I tried calling Andrea ... too late.  Seems everyone had the same idea and suddenly the cellular system was maxed out and nobody was getting any calls through.  I tried for quite awhile, but no-go.  I felt terrible that my first call hadn't been to her and of course she's never let me forget it!!

At some point in all this caos - (memory's getting a bit foggy on the particulars), the 3rd plane hit the Pentagon.  It's difficult to describe the atmosphere and the cascade of events that occurred at that point, but I can say that it was a pretty awesome thing to be on a Navy Base the moment our nation realized we'd been attacked and were now at war.  All hell broke loose around the base.  The meetings ended abruptly and we were given a phone number to call in the morning that would inform us as to whether the meetings would continue the following day.  Then the entire base went on security lock-down.  There were Marines with machine guns everywhere and I was really thankful that our meeting had actually been off-base across the street from the main entrance.  Nobody was getting on or off the base without a full search of their car (dogs, mirrors, everything) and the line was already enormous with people coming an going.

Within our own little group, it quickly became apparent that our own leadership wasn't handling the crisis well and wasn't going to be providing leadership anytime soon.  I was sharing a rental car with another person and so we got together to decide what we were going to do.  My first instinct was to go fill the rental car with gas and buy some non-perishable food items from the local grocery store having no idea what would happen over the next few days.  All flights had been grounded within minutes of the Pentagon attack and the airports were shut down indefinitely.  It was pretty clear we weren't going to be flying back any time soon.  I called the rental agency and was informed that they had waived the usual "one-way" fees and we could drop the cars off anywhere in the country due to the circumstances.

Andrea was around 4 mos pregnant with Daniel at the time and was in an absolute panic back home. She knew only that I was on a trip to DC for a military program meeting. She wasn't even sure whether I was in the Pentagon when it was hit, and now all the lines were locked up well into the late afternoon.  Eventually though, I was finally able to get a land-line call though and she was more than a little relieved.  We spent the evening glued to the TV in our hotel rooms.  It's difficult to describe the boiling mix of uncertainty, fear, frustration, and helplessness we all were feeling ... indeed the entire country was feeling.  You could sense it, see it, hear it everywhere.  It seemed like EVERYTHING came to a halt and people just clung to their TVs & radios for news.  Unfortunately, there wasn't much of it.  I felt somewhat sorry for the news anchors who clearly had no script, no new news, and no clue what was happening.  So they just kept restating what everyone already knew.  Eventually they all started speculating - which was extremely unhelpful - but probably unavoidable too.  Later the reports and pictures of all 4 crashes were coming in - eyewitness accounts, amateur videos & pictures, and then even 1st person accounts from downtown New York and Virginia.

Then, as the entire nation watched on TV ... live in many cases ... the first tower collapsed.  It just started at near the top, and like a deflating airbag, just rolled down on itself from top to bottom spewing an enormous pile of brown dust and ash.  People screamed and ran, and soon most cameras were blotted out by the dust cloud. You could no longer see anything except from extreme long shots where the top of only one tower remained poking above the huge, billowing cloud of dust.  We couldn't believe what we were seeing. It was just gone.  Were there still people in there?  Yes.  Lots.  Only moments before, we'd been watching video of them jumping out of windows to their deaths because they were trapped by the fire.  I'm sure I wasn't the only one trying to, and trying not to, imagine what they must have gone through in those last moments.  How many were there?

Suddenly, the news crews came alive again screaming, expressing their shock, replaying, going for eye-witnesses.  People were speculating and worrying about whether the fall, shock, debris, etc. from the first tower might have weakened the second tower.  They were discussing whether to evacuate emergency crews and how to get engineers there to assess the damage to the other tower ... and then it went as well.  Like an instant replay, it went in nearly identical fashion to the first.  Again, the dust boiled, the cloud thickened, and the streets of Manhattan went dark beneath the cloud.  The live news feeds showed men and women in business suits that were shredded, some covered in blood, all caked in dust and trying to breathe through shirts or jackets to filter the choking dust.  Emergency crews were few and far between being unimaginably overloaded with the magnitude of what was happening, the lack of communication (much less coordination) and now, the loss of huge numbers of their own crews.  Firefighters, emergency crews, and rescue workers were on their way from neighboring towns, counties, and even from most of the rest of the United States, but it would be hours, days, even weeks before any kind of organization could be brought to the huge numbers of people that began pouring in to help.

It was late into the evening before I could bring myself to turn off the TV, wipe the tears away, and try to get some rest.  Tomorrow would be a long day.  But I did sleep ... a little.

Brenda (my rental-car buddy) and I left the next morning after breakfast with our team.  I happened to have a laptop with a map program and a GPS with me that we used to navigate the rental car all the way back to Indiana.   I chose a route through the deep backwoods of West Virginia to avoid having to go back through the DC area fearing horrible traffic. (It turned out it wouldn't have been that bad, but accurate information about ANYTHING was extremely scarce at the time and we didn't want to get anywhere near D.C.).

We were home surprisingly early and traffic wasn't nearly as bad as we'd worried about.  Andrea and my family was extremely relieved and all wanted to hear the tales of our adventure.  The entire nation was in shock for weeks / months and we all stayed glued to the TV as events & information unfolded.

Almost immediately an enormous ground swell of both patriotism and crying out to God took place that swept the nation and was apparent EVERYWHERE.  Flags were hung from overpasses and flown from vehicles, prayer meetings were being held everywhere, and even newscasters were using the word "GOD" in public (of all things) - covering church services and prayer meetings. It was an amazing and, in some ways, wonderful time in that regard.  The liberal, anti-Christian yahoos were strangely silent.  They probably felt they would be putting their lives in danger to attempt to speak out about the public displays of Christianity. (And I'm pretty sure they were right!)  The nation was crying out to God, showing a completely non-partisan unity, and the most amazing display of patriotism I've seen apart from how the history books depict what things were like during WW-II.  Americans took pride in being Americans, again and as the shock and horror turned to resolve, they wanted to know who was responsible.  And about 40 million rednecks with guns were ready to go to war on a moment's notice if anyone would have just said, "jump"!  And it was wonderful!  The daily displays of patriotism, Christianity, and unity were nothing short of amazing.  Yet over all of it hung the shock and dark heaviness of what had happened ... and the uncertainty of what would be happening next.

Over the next few weeks, reports were solidifying about how many people were actually lost ... thousands. How could that be possible?!  How were the towers not evacuated - at least below the fires - in all that time?  But it would be months, even years for all those details to be sorted out.  The event was compared to Pearl Harbor early on, but no one thought it could have been THAT bad (in terms of casualties).  But soon it was realized ... it was worse.  But the worse the news got, the more the country pulled together.  Certain images began to circulate that brought people together.  The "cross" that appeared in the rubble formed by girders; the 3 firefighters raising the flag over what came to be known as "ground zero"; and of course the skyline with the towers still standing.

Despite the way most people seem to want to remember President G. W. Bush, this was his shining moment. He stepped up to the plate, demonstrated true leadership, and spoke some great words during those dark days.  He and New York Major Rudy Giulianni were instantly on-the-ground and in the middle of what was going on.  They were THERE. They brought leadership, hope, strength, courage, resolve, and FAITH to the nation and the nation responded in unity and strength to the president's leadership.

I shudder to think how different it would have been if our current administration had been in power at the time.  Bush did a great job in an impossible situation and the nation LOVED him for it ... for quite awhile. It's a shame how quickly most have forgotten that.  And it's shameful how the subsequent administration has failed to recognize those achievements and the context in which many decisions that have since become unpopular were made.  The public in general has always been fickle and fame, as they say, is fleeting.  But I remember when Bush was at his most popular - and in my opinion, he deserved every moment of it.  Not many men, much less presidents, are handed such a moment ... such a test of character ... when nothing artificial will do - when the whole WORLD looks to you - some out of desperation, some for organization, some just to see what you're made of.  The white-hot, penetrating, soul-revealing glare of the eye's of the entire world turning to you and waiting to see what you'll do and what you'll say.  THAT's when everyone finds out what you're made of - and no amount of politics, or slick speech writing, or posturing, or blame-shifting will cover for a lack of actual character in that man to whom everyone looks for what they need in that moment.  And George W. Bush came through.  That is what I remember most about his presidency. And whether that is your most memorable thought about him or not, it is something that you should not forget.  His leadership brought loyalty from his citizens, respect from his allies, and fear from his enemies during that time.  And that is impressive no matter how you cut it.

Air travel was grounded for a LONG time (don't recall exactly), and it was extremely hard on the nation and really has never recovered.  The impact to the airline industry was horrendous and several major airlines went under - even after "government bail out" attempts.  The restrictions, procedures, and new regulations that flooded into the air travel industry were extreme and, in my opinion, largely ridiculous ... still are.  Up to that point, I'd been flying for business about twice a month and really loved it.  I've never enjoyed flying commercial airlines again since.  The airline industry could certainly have handled the necessary changes to prevent similar tragedies in the future, but the "take over" by the newly created "Office of Homeland Security" - which I personally consider to be president Bush's greatest (though also most understandable) mistake - has left nothing but scars, failed businesses, overburdensome regulations, and massive unnecessary expenses in its wake.  But I digress.

Eleven Years has seen a lot of water go over the dam. And our nation today seems to be to have made it to the complete opposite end of the spectrum during that brief time.  We are more divided than I ever remember, we are less patriotic, more skeptical of our place in the world, and certainly more anti-God and anti-Christian than at any time I've even read about much less experienced.  We've lost our way, lost our resolve, and lost our respect for God.  I attribute this almost entirely to a complete lack of leadership or, worse, leadership in the wrong direction.  What a difference a decade can make.  If you'd have described to me the state of our nation in 2012 from back in 2002, I'd have never believed it.

I hope this day, September 11, 2012, we all will remember what it was like ten years ago when we were proud to be Americans, proud to state that we were a nation UNDER GOD, and proud of our leadership, and that it will provide us with some guidance - at least a vision - of where and what we can be again.  Americans have always been at their best when responding to a challenge.  I wouldn't wish for crisis / tragedy / challenges to come upon our country, but boy could we use one about now.

- Tim -

Too Much Too Soon

We're back from Riley now.  X-rays showed no obvious fractures to the vertebrae.  Doctor Hill thinks this is a result of over doing it at the Fair on Sunday - I wasn't at all happy about him going to the fair, but in the end I relented because he'd wanted to so badly & missed the last 2 years with back problems.  Did I make the wrong choice?  I'm honestly not sure. The fun that he had with his cousins & grandparents may well have been worth this price to him.  It will be interesting to see what Daniel thinks after this is all over.  Strangely, my apprehension had more to do with him catching some infection while there. Another back injury never crossed my mind.  

I can't remember a single time I ever ended up being glad I didn't go with my intuition. I'm usually pretty good at listening to it, but I gave in this time.  One of these days I'll learn.  :(  (And BTW, for those of you thinking about this, there's a distinct difference between what I hear as my "gut" / "intuition" and hearing God speaking. I'm not completely clear as to the relationship between the two, but would lean more toward there being a connection than not.  But that's a discussion for another time. 

The doctor indicated that the steroids he's been on (just finished the current round) could well have added to the situation.  We also know that one of the other chemo drugs has some strange side-effects that could have contributed as well.  I asked him specifically about the possibility of a new CNS issue (cancer in the spinal column) and he was able to put my fears to rest ... whew!  That's what had me bordering on panic the last 24hrs, so good to know this doesn't look anything like that.

So for now, we've got some better pain meds and orders for rest and heating pads for the next several days.  Thanks to all who prayed for us the past couple days.  Please keep them coming for quick healing and especially for his mental state.  All this has been VERY hard on him psychologically and he goes in and out of some fairly serious depression.  That may be the worse problem he's actually facing right now.  Please pray for wisdom and discernment on our part as we deal with that aspect.

Thanks again for all you all do for us and for standing with us in this fight.

- Tim, Andrea, & Daniel -

Mirrored on our Caring Bridge site at: http://www.caringbridge.org/visit/danieljmiller/journal 

A Mixed Bag

Mirrored on our CaringBridge site here: http://www.caringbridge.org/visit/danieljmiller/journal


After a week's delay to the start of our last intensive phase (next comes "maintenance"), today Daniel's blood counts were high enough to start the "Delayed Intensification" phase.  We've been looking forward to this one with mixed emotions.  It has all the promise of indeed being intense, but we're also looking forward to getting to the other end of it.  There will be nothing easy about the next 3 years, but it will definitely be better than what we're facing for the next 2 months.

Today started with the "good" news of decent blood counts and being able to start phase IV, but has pretty much gone downhill from there.  Forgive me if this sounds like "venting", but that's what it is. It's been a tough day and I feel like sharing.  Sorry to make you the beneficiaries, but think of it as a rolling prayer request. ha ha.

As I write this, Daniel has thrown up all his dinner and is now fighting the dry heaves.  I think it's the extra heavy does of anesthetic he got, but not really sure.  Could also be any of the three chemo drugs he got along with it.

During the spinal tap procedure they had trouble getting him completely "out".  This has happened before and they just keep pumping the anesthesia into him until he goes out.  But once he was finally out (the procedure itself went fairly smoothly) his heart rate & blood pressure dropped dangerously low.  There was some concern for awhile, but he came back on his own and other than a little nausea, was doing fine and filling me in on all the components he needed to get in "Monster Hunter" (his favorite Wii game) to get to the next level.

I had gone into work this morning and was waiting for confirmation that his blood counts were a "go" before leaving for the hospital.  Unfortunately, they were WAY late in getting the blood drawn and by the time I got word that we were g2g - I had to FLY down to the hospital to get there in time.  By the time I got there, he was already in the O.R., prepped, and ready to go.  He was upset and nervous as usual and his pulse was already passing 100.  I took over from mom with a back & neck massage and started a conversation about Monster Hunter and we got it back down to the low 80s before the doctor arrived.  I prayed through most of the procedure (since, if you recall from previous posts, the only time I can't watch a medical procedure is when it's this doctor and my son.)  But other than a little trouble getting him "out", it went well this time (the doc's getting better! :)

Afterward, in the recovery room, we had the tense moments about the low B.P. and then Daniel was complaining of being cold.  We were informed that the knob had broken off the thermostat and the vent was directly over the bed. (Great engineering guys - NOT.)  

As Daniel continued to wake up, I had a fairly long conversation with the doctor expressing my growing frustration at not getting any traction on his continued lack of growth.  I think she finally "understood" me when I used the word "unacceptable".  But we'll see.  In fairness, this doctor is somewhat caught in the middle between me and the other doctors who are the ones that need to be looking at these other issues.  As the oncologist, what I'm after is not her specialty, yet she is the one through whom everything has to go.  Anyway, we'll see how this plays out.  I realize nothing is going to happen physically until we're through this intensive phase, but what I'm not happy with is that there is no discussion, no plan, no ownership, and no "next step" in place.  Is that the engineer, the project manager, or the DAD in me coming out?  Doesn't really matter - they're stuck with me.

As we prepared to leave, we go the low-down on what the rest of this phase will look like.  Unfortunately, one of the primary drugs they'd wanted to give him ("Pegallated Aspariginase") turns out to give him a fairly severe allergic reaction.  They tried twice and then gave up a couple months ago.  So the "plan B" is a different drug that has to be given 6 times (on 6 different days) for each single dose the Peg-Asp. would have been given.  This means we're heading back to Riley every other day for a week and a half each time.  

Hmmm. Didn't know that.  

We also found out, it can't be administered through his port.  It has to be given my intramuscular injection - in the thigh.  

Hmmm. Didn't know that.  

Depending on the dosage he'll receive (which they didn't have yet today), they may have to give half of it in two different locations ... one in each leg ... every other day ... for a week and a half ... and they HURT.

Hmmm. Didn't know that.

Daniel REALLY doesn't do well with needles (yes, even after all he's been through).  As they were describing to us where to apply the Lidocane (a topical anesthetic cream) before he comes in, he caught on.  We played it way down talking about how much smaller injection needles are than the blood-draw and access needles he's used to.  I think we made some progress there. But the fact that these injections will make the muscle hurt didn't come up.  That's going to be a big problem ... especially as they keep injecting into the same area every other day.  This will be rough ... very rough.

My mood was going downhill fast this afternoon.  As we left, we stopped by the pharmacy downstairs where the doctor had called in a prescription about 45 min earlier, only to be informed it would be another 30-45 minutes.  Great.

As we sat there waiting, Andrea and I were talking about some financial issues predicated by our Family Doctor that I won't go into except to say that it didn't do my deteriorating mood any good at all.  I left Andrea & Daniel in the pharmacy waiting area and headed back to work since we'd driven separately.  The rest of the day at work didn't go much better, but at least I got 7 hours in.  How productive they were was another matter as my head was in a million other places.

As I left work, I found myself at the tail end of the thunderstorm that blew through minutes earlier.  REALLY need the rain - but did it have to be right when I wanted to drive home ... and in the same direction.  I know - gift horses and all that.  As I pulled in the drive way, I was accosted by the pesky little neighbor girl who was adamant that she needed to come in the house with me - if not to play with Daniel (whom I told her was not feeling well), then to be allowed to cook the can of soup she was carrying around in our microwave.  What?!  So I got this convoluted story about how they don't have a microwave, and couldn't find the cord to the hot plate, and the stove costs too much money, and ... Um no; not playing this game.  You'll have to have your parents get you something to eat.  I'll have to find out what all that was about another time, but not tonight.

Since I got home, Daniel has been getting more and more nauseated until he finally lost all his dinner and now is fighting the dry heaves.  I can't even get an anti-nausea pill into him for fear it'll just come right back up.  He feels miserable.  The good news is that this has been a very rare thing for him to get this sick.  The bad news is that he's this sick.  He's supposed to start another oral chemo drug tonight, but I'm obviously not giving it to him in this condition.  He's had enough for one day, and it can wait an extra day.

Andrea has been through the ringer these past few days (actually, I could just as easily insert "weeks", "months" or "years" there too) as well.  We think she's had a stomach bug and the family doctor she visited yesterday thought the same thing.  She'd done a sleep study a couple weeks ago and this visit was supposed to be reviewing the results, but they didn't seem to notice that they hadn't yet received them from the hospital yet. So despite frantic, last-minute calls, that didn't happen.  So now there will be another office visit once the results are in.  They'll no-doubt prescribe another several pills for her to start taking that won't be covered by insurance and will add to the hand-full she takes every day as it is.  I think I'll be attending that next meeting as well if at all possible.  Hope I don't need to start looking for another family doctor again, but I won't hesitate if I think things are not going in the right direction.

OK, I'm going to stop there.  My apologies if you've made it this far.  I feel better. LOL. :)  The truth is, we have an ENORMOUS amount to be thankful for that we DO know about, and way more than we could dream of that we don't know about, but Scripture promises.  I have a wonderful family and we're together this day and the future looks bright - next month, next year, and 1000 years from now.  We have much goodness to look forward too.  We knew this phase was going to be a mountain that needed climbing.  It's height and ruggedness came a little more into view today, but it will just be that much sweeter to be on the other side of it WHEN we get there ... and we will.

Lord please let us learn ALL that you have planned for us in these coming days - don't let any single second of difficulty or pain or struggle be lost for the good that You desire to bring from it.  We cling desperately to your promise that A.L.L.(*) things work together into a pattern for good ... (Rom 8:28)  Thank you.  Thank you for everything about today. Thank you for loving us and being here beside us every step of the way and for keeping our eyes on the far horizon.  Teach us to trust, teach us to love, teach us to enjoy "life in every breath."

Amen!  Thanks to everyone who is also running this race alongside us or cheering or handing us a water bottle on the way by.  We love you and appreciate every one of you.  Please keep your prayers coming - they are by FAR what we value and covet the most.  

Please also remember to pray for Joey, Nick, and Elizabeth Keller as often as possible.

I'm off to set up the air mattress beside Daniel's bed for the night.  

Grace and Peace,

- Tim -

2nd Try for Round 3

Reposting from http://www.caringbridge.org/visit/danieljmiller/journal

2nd Try for Round 3 

Wow - I guess it's been awhile since I wrote here.  Things have been going pretty well.  Daniel is becoming more active, but it's been hard on him.  He has so little energy and stamina that his returning desire to run, jump, and play just wreaks havoc on his very out-of-shape little body.  While we continue to be stymied over his lack of growth in either height or weight for the past 3 years, we hope, trust, and PRAY that the lack of energy and stamina has more to do with 3 years of sedentary life-style ... because that means it's simple to fix.  It may not be EASY mind you - as enough exercise and diet to make a difference in your health are rarely considered "easy" - but the solution is simple.  As his desire and enthusiasm (and warm weather) return, it is my hope and plan to find more and more FUN ways to get some exercise - preferably for ALL of us, but especially Daniel.  We'll know soon enough whether his strength & endurance will return.

We remain worried - increasingly so - about his lack of height and weight gain, and I'm planning to begin pursuing this again as soon as I can find enough time to breathe again after my work schedule settles down.  We're in a crunch right now before a big delivery date and I barely get home in time to tuck Daniel into bed, get a bite to eat, and hit the sack myself these days - but I'm SOOO incredibly blessed to be enjoying my job again.  It's been a really long time since I can remember not hating getting up in the morning.  Thank you Lord for THAT blessing in the midst of this season of trials right now!

Tomorrow morning however, will be a different story.  It's hard to fathom that I am HOPEFUL tonight that we'll be admitted to the hospital tomorrow for more chemotherapy, but after last week's failure due to Daniel's low blood counts, we really want to get this stuff over-with.  Last week was the second time we were delayed due to blood counts being too low and nobody seems to be able to explain why this happens.  "Could be a virus" (though he has no other symptoms & feels fine), "could be allergies" (though he has none), "could be his body is responding to the chemotherapy" (though it's not supposed to).  Or (in my own thoughts) it could be God just setting His own timing for reasons known only to Him.  We try to "roll with the changes", but really, we'd all like this to be over as soon as possible.

So tomorrow, we'll head back to Riley, packed up for a few days' stay, and pray for the best.  We'd appreciate your prayers as well.  If things go as planned, we'll arrive around 10, get a blood test & a spinal tap procedure about 11 (usually more like 12), and then check into the 5th floor and start his 24hr infusion of Methotrexate around 6 or so.  He'll be confined to the Hem/Onc ward for the 24hrs while the infusion is going on, but after that, if he's feeling well, we can wander about the hospital.  Last time, Daniel and I had a laser-tag war in the main lobby and a few desolate hallways of Riley on Sunday afternoon.  Other than a few stares by doctors, nurses, and a cop passing by, we had a lot of fun. :) 

They'll check his blood again every 6hrs or so to see how the MTX level is falling as it is eliminated from his body.  Once it's below a specific level, we're free to check out.  The first time, it was Tuesday afternoon.  The second time, it was Monday morning.  We never know.

For our Prayer Warrior friends, here are our requests:
1. That everything in the hospital (procedures, etc.) would go well and without mistakes or "events".  Events are bad.
2. That the drug would do its job against any cancer cells that might still be lurking about and then be eliminated quickly with a minimum of damage to his body - especially long-term.
3. That we would all have a comfortable and "enjoyable" time ... especially regarding roommates and their parents / visitors.
4. That Daniel would continue quickly on the road to recovering his health, energy, strength, and stamina (and appetite)
5. That his growth would resume to normal as quickly as possible
6. That Andrea and I will find time to rediscover one another and our marriage in the near future,
7. For Andrea's health (this would fill another post or 10 by itself, but she has a long list of prayer needs herself as well!!)
8. That our Awesome, wonderful, gracious, loving God would be glorified and honored through all of this and through our lives.

A huge thanks to all our friends and family who have been following us through this ordeal - especially those who have helped us along the way in so many ways we've lost count - prayers, gifts, help at the house, moral support, or just thinking of us.  Thank you all.  We love you and may our gracious Lord return your blessings many-fold.

- Tim -

Easter

(Mirroring most recent entry here:  http://www.caringbridge.org/visit/danieljmiller/journal)

Easter:

Andrea covered much of this in her update to my last post, so I'll not rehash the same events except to fill-in a few extras.

It was a really long night for all three of us.  We got here around 1:30a and weren't moved to a room until after 5:30a. So it was a REALLY long night for Andrea and I trying to catch a few winks between interruptions in a couple of really small, hard chairs. There wasn't even the usual bench/ couch in this particular ER room, and we had to bring in the 2nd chair at that.  I didn't get much sleep until after about 8 or so.  Although interrupted quite a few times, we both "slept" until about noon.  Daniel & I both tried resting a couple other times during the day, but it was pretty much a wasted effort. 

Any time we come in for a fever, they automatically do 4 different blood cultures.  They take two samples each from two different places (his port and his arm) and place samples in petri dishes in an automated machine that "watches" for anything to start growing.  In the past nothing has ever shown up. But the hospital started calling us about midnight last night when the machine found something growing.  Unfortunately, my phone was upstairs on the charger & it wasn't until they tried Andrea's phone about 1a that we got the message. 

We still haven't heard exactly what bacteria has been identified, but if only one of the 4 remains positive (nothing grows in the other 3 cultures), then there's a fairly high probability that it's just the result of some contamination in one of the samples.  But without knowing for sure, we have to take it seriously and hit him with a boatload of antibiotics - something I hate doing under NORMAL circumstances!  But I see very few choices here.  I strongly suspect that we won't see any additional cultures go positive (I think it was a contamination issue), but the extreme danger of actually having an infection with his almost nonexistent immune system means we have to take every possible precaution and hit it hard and aggressively - even if it's a false alarm.

After the incident with the other kid earlier today (all accidental of course, but nonetheless frustrating), the combination of some Tylenol and some food seems to have made things much better.  Much of the swelling has gone down and the second time they attempted to re-access the port, they called in the Nurse Supervisor who'd had a lot of experience.  It showed.  Things went quickly, easily, and with MUCH less pain than the previous time.  Our nurse was great, and he felt really bad about the whole ordeal, but we were also really glad he asked for help in this situation.

One of the antibiotics they give him is called Vancomycin. Unfortunately, many people have a low to moderately severe reaction to it known as "Red-Man Syndrome".  This happened to Daniel the first time he received it a few weeks ago.  He's gotten it once or twice since then with no problems since they adjust to giving it to him much more slowly and give him Benadryl first.  Tonight though, even after the Benadryl and with the slower rate, he started to feel some of the initial symptoms of a reaction and became worried about it.  I stopped the IV myself and went to talk to the nurse.  We decided to wait a bit, get some food in him, and then try again even more slowly.  The combination (together with watching "Transformers" on TV :) did the trick and we had no further issues.  But it's all combined to just make a really long day.  If it weren't for the basket of toys they gave him, you'd have never known it was Easter around here.  But we'll be sure we get time to celebrate as a family - whether it's here in a hospital room, or back home.

As Andrea said, his next phase of chemotherapy is due to start this coming Friday.  But it will require that his white cell counts are over a certain level that he's not even close to right now.  Mixed emotions over that to say the least!
Nevertheless, I find myself at the end of this day with a grateful heart.  Having watched "The Passion of the Christ" on Friday evening as a family, we have all been struck this weekend with the unfathomable suffering and selflessness that our Lord Jesus Christ underwent on our behalf.  Our own trials and tribulations are insignificant and, in Paul's words, but a "breath" compared to His eternal sacrifice for us.  It makes me feel ashamed to complain or, even for a moment, feel sorry for ourselves compared to what Jesus Christ did on our behalf. 

Many Christians don't realize that Jesus' sacrifice was not limited to those few hours leading up to Golgotha a couple thousand years ago.  Rather, it was Jesus willingness to condescend from His position with the Father in order to become a Man ... one of us ... not just for thirty some years, but FOREVER.  Perhaps the most staggering thing about what God did on our behalf all those years ago, was not that God would die on our behalf (though that is incomprehensible enough), but that there is now a MAN seated at the right hand of the Father on the throne of God.  What Jesus Christ gave up in order to become one of us (note that He never ceased to be God, only laid aside some of his glorious attributes that He might also become fully human - Phil 2:6-9).
Paul considered it a great privilege and a necessary part of the process by which the Holy Spirit perfects His work in us, that we must participate "in the fellowship of His suffering" (Phil 3:10).  And so if, in some small measure, these trials which God has allowed into our lives, might teach us something about our Lord ... much less make us in any way more like Him ... then we can truly rejoice in these things with much thanksgiving that God is at work in us and through us to make A.L.L. "things work together into a pattern for Good." (Rom 8:28) 

Each day God finds a new way to ask each of us, "Do you trust Me?".  And though we certainly find ourselves wavering far more often than we'd like, it becomes a bit easier each time to trust Him with A.L.L. things.  ("Control" is such an illusion anyway, isn't it? :)

Though we celebrate Easter as one of the central-most holy days of the Christian Calendar, it is important to recognize that the entirety of the means of our salvation was accomplished 3 days and nights earlier on a wooden cross on the top of a hill named Golgotha.  The Resurrection 3 days later proved that He was Whom He said He was and accomplished what He said He would accomplish.  Easter is rightly a time of enormous celebration, but all of Time and Eternity revolves around the Cross and Jesus' proclamation ... "Tetelestai": "It is finished".

We hope everyone has had a joyful and fruitful time of celebrating Jesus' resurrection and drawing closer to Him through these past few days.  Our gratitude and love go out to all of you who have kept us with our saga during these trying times, but mostly to our Faithful, Loving, Gracious, and Wonderful Counselor - the King of the Universe, Master Physician, and Personal Friend - "Jesus Christ: God's Son; Savior".

Grace and Peace to all;

Daniel, Andrea, and Tim

Andrea's Message

This is Andrea.  I'll try to add a few more details, and Tim can write a much more eloquently worded synopsis when he has time.

We got to the ER around 1:30 am Easter morning.  Tim and I were up all night.  They took more cultures and gave him two different antibiotics.  His counts came back about the lowest he's ever had I think - 150. Daniel was able to rest some between pokes and prods.  He was taken to his room at 6:30 am - 5134-2 (which was an ordeal as well.  Room he was to go to had some kind of leak all over the floor, so had to put him in another one with a roommate that was missing a bed, so had to get a bed, sleeping chair for us, and table cart thing.)  After he got settled in, I left and came home to sleep while Tim slept in the room.

According to Tim, he was given a small Easter Basket with a few stuffed animals and toys in it.  While he was in the play room apparently another kid tripped over his IV line, causing the medicine he was getting to all go under the skin, making him sore.  He had to have the port re-accessed, and the nurse didn't get it in right first try and had to re-stick him again.  Tim said he thought he was having another reaction (has had them before so give this type antibiotic real slow to him) to one of the antibiotics so the nurses were discussing with the Dr. what to do. 

Why are we here in the first place?  One of the 4 blood cultures taken Friday when he was in the hospital due to a fever came back positive for bacteria growth.  It was one taken from the port site (take two from both port site and his arm.)  They said it could be a contaminated sample, but will have to wait and see if the others grow any bacteria as well.  He has to have three consecutive days of negative culture results with no fever before he can go home.

This couldn't have been worse timing for him, with it being Easter weekend, and the fact he has a scheduled 4 day hospital stay this coming Friday.  It is possible he'll end up being there all week, but we don't know for sure.  Still have to find out if his chemo for this coming Friday is count dependent or not (meaning if it's too low they wait till it comes up.)

We know God is in control through all this.  We know He is watching over Daniel.  It's just been a very hard time emotionally for all of us, but especially Daniel.  We had had such a great evening together Sat.  Watched the movie "The 10 Commandments".  Daniel was in a great mood and being silly all evening.  He had just got in bed at midnight (I know - but hey, it's a 3 1/2 hr move :-P) when I got the call from the Dr. about his counts and having to bring him in.  He became hysterical and couldn't quite crying.  I wanted to scream NO and ball myself, but couldn't.  I didn't understand why a few hours should matter that much and not be able to at least wait till morning to bring him in.  But as Tim wisely said, you just don't mess around with this type of thing.  So off we went.

Lord, what are the lessons for us to be learning through this?  Help us always keep our eyes on You!  Thank you all for the continued prayers.  Sorry if this is rambling, but I'm really tired and am getting brain fog!  Will keep you posted on how things progress.

From a Good Friday to a Bad Easter

Just got an emergency call from Riley that they found something in Daniel's blood cultures. So we're heading in to ER now (just before 1am). He'll be admitted and given broad spectrum antibiotics until they can get an exact determination of what's growing in the culture.  He's practically hysterical right now over the thought of having to go back in again.  Please Pray for him.

More to follow

Home Again

As of about 7pm last night, Daniel is back home again & doing well.  His fever is very low-grade or non-existent at this point and we're ALL quite happy to be done with the hospital ... at least as an in-patient ... at least for now (sigh).

His white cell counts are actually back into the normal range, though red counts remain low and platelets have just gone nuts.  But we're assured it's all "fine". 

After spending Thurs, Fri, & Sat night and most of the days on Sat & Sun, I'm feeling pretty exhausted.  Losing an hour for SDST (that's Stupid Daylight Savings Time) hasn't helped as I could barely drag myself out of bed anyway!  So keeping up with work and my Bible study has been a bit more of a challenge this week and I'm feeling it.  But we were EXTREMELY blessed by a good friend coming by to spend Sunday night with Daniel at the hospital so that we could both have a night off.  Andrea was originally planning to come stay the night, but was absolutely dreading it as she was not feeling well anyway and has enough trouble sleeping without trying to do so on the hospital's pull-out chair and being awakened every 32 seconds by the nursing staff through the night ... OK, that was a slight exaggeration ... but not much!!  Needless to say, we were both extremely blessed by such generosity AND at having Daniel released yesterday.  THANK YOU LORD!!!  And thanks to all of you for your prayers.

Tomorrow (Wed) begins the 2nd half of this phase of chemo treatments & will be a long day.  We're also scheduled to meet with a pediatric psychologist to see if he can help Daniel with some of the stress and depression he's been dealing with.  This has become a big concern of mine recently as Daniel just doesn't seem to be dealing well with the whole situation.  10 year olds are pretty resilient little guys, but what he's gone through in the past 2 years would certainly challenge even the stoutest adult!  Most of the time, he seems fine, but any conversation about big-picture stuff, changes in plans, new challenges of ANY kind, or sometimes just for no apparent reason, he'll be in tears again.  Getting his mind off things is fairly easy with distractions, but it's clear to me that this is NOT the same as dealing with them and processing them. They're still in there "cooking" and I've yet to find a successful way to help him get them out. 

We continue to have conversations about giving things to God in prayer, about asking Him to give us peace, even about listening for His voice and imagining His arms around us.  But so far, it hasn't appeared to me to make much of a difference and he's not really come to the place where he does this on his own (maybe at all) when he needs to.

Whether the psychology department at Riley will be of any benefit remains to be seen.  As you might imagine, Dad (that would be me) has VERY mixed emotions about this, but I'm willing to give it a try and see what happens.

As always, prayers greatly appreciated!

- Tim -

Still Here!

Mirroring our CaringBridge update here:

Sorry for the delays in posting. I sometimes forget that not everyone follows Facebook religiously!  We're still admitted here at Riley and Daniel has still got the fever and very low white-cell counts (ANC < 500 for those familiar).  So there's no immediate end in sight. 

I've spent all the nights here with him since he was checked-in, but Andrea is currently planning to spend tonight (Sunday) here so I can get a solid night's sleep before returning to work tomorrow morning.  Unfortunately, she's been feeling under-the-weather herself and now showing signs of a cold as well.  So that could very well limit her ability to even enter the floor here in the Oncology wing.

Though we still don't have this morning's counts, the past two days have shown very gradual improvements .. at least the numbers (fever and blood counts) have been heading the right direction as opposed to getting worse.  But they all still fluctuate wildly. So it could be a long week.  His next clinic visit is scheduled for Wednesday, but is dependent on his blood counts, so that could be delayed unless things improve markedly.  Hitting him with the next round of chemo after this bout really doesn't make me happy, but there are few choices here and until I hear something directly from God to the contrary, we intend to stay the course.

Daniel is not at all happy over the prospect that someone might not always be available to be with him 24/7, but at this point, that's a very possible reality.  Besides a couple of deadlines at work this week, we also have some evening events coming up that Andrea and I had really not wanted to miss as well.  So it's definitely one-day-at-a-time.

On the plus side, the recent purchase of my laptop has allowed me to spend some of the time here at the hospital working on my Genesis class materials.  So far, I've been able to keep pace at least with the lecture notes.  Despite the obvious timing difficulties, it's been a real joy for me to be teaching again and I'm very thankful that the Lord has provided the opportunity and, so far, the ability to keep up with the class.

On the minus side, we got hit with the first round of bills coming through this week.  It blew through our entire Flexible Spending Account allotment for the year in one whack.  We're looking toward at least 4 planned hospital stays during April & May, and this week's extended (unplanned) hospital stay will undoubtedly be racking up a pretty ugly financial picture for us this summer.  We hope and pray for no more unexpected visits / complications as have been plaguing us with the fevers over these past couple months. 

On a positive note, we've been extremely blessed at the thoughtfulness and all the work put forth by good friends Eric and Veronica Phillippe who are sponsoring benefit concerts in Daniel's honor this Spring.  The first one takes place a week from today at Horizon Christian Fellowship.  Unfortunately, it doesn't appear Daniel will be able to make it, but we're still hoping Andrea and/or I will at least be able to attend.  It's another of the amazing ways that God continues to touch and bless us through family, friends, and the Body of Christ during this difficult time. 

We'd love to see everyone if you can attend (and it's free!! :-)  Event details can be found here: https://www.facebook.com/events/326194700760323/  and here: http://www.horizonindy.org/news/benefit-concert-for-the-miller-family/)

We are so very, very grateful for all the prayers and comments that you all send our way.  We feel (and NEED) every one.  Thank you!

- Tim -

New Phase - New Challenges

(Mirroring our latest Caring Bridge post from: http://www.caringbridge.org/visit/danieljmiller/journal )

My apologies for not having given more updates recently.  I’ve been really tired lately and struggling just to keep up with keeping up.  Tuesday marked the end of our 10-day mini “vacation” between phases of chemotherapy – a vacation that saw us in the emergency room twice with mysterious fevers OBTW!   Tuesday was another long day at Riley as we began the “Consolidation” phase which will last for about 2 months.  This phase has Daniel on 6 different types of chemotherapy drugs and a few others used to help control side-effects from the severely nasty poisons being pumped into his poor little body.  A few things are new in this phase, one of which is the lack of steroids that caused his appetite (and weight) to go crazy during the first phase.  He gained 12 lbs in just 4 weeks!  So we’re thankful that part is done for the time being.  But now have new issues with which to struggle.  

During our brief break, Daniel began developing sores on the inside of his mouth. We’re getting mixed reports as to their cause, but I’m pretty confident they are a direct result of one or more of the chemo drugs.  There are 5 or 6 good-sized sores on his tongue and gums that really hurt when he opens his mouth or talks so, as you can imagine, his eating has dropped completely to the other end of the spectrum from just a week ago.  He’s also struggling with stomach pains.  Nausea is a common, and can be severe, side-effect of a couple of the drugs, but I’m not entirely sure what’s to blame.  At this point, they could be from not having eaten at ALL for long periods of time (he often has trouble distinguishing hunger pains from nausea), or gut cramps from constipation, or nausea directly from the drugs.  We have him on a scheduled anti-nausea med, but it remains to be seen how well this will help.

The other really new thing for us now is having to administer one of his chemo drugs at home through his “port”.  The port is a small plastic & rubber contraption planted under the skin and muscle of his chest just above his heart.  It appears as a small lump in his chest with a good sized scar above it.  When they draw blood or administer drugs, they put a single needle through the skin into the port and then use it for everything going in or out.  This avoids having to abuse the veins in his arms & wrists over and over through this process.  Usually, the “access” his port when we arrive at Riley, use it all day, then pull the needle out as we prepare to leave.  But now, they’ll be leaving the needle in and covering it with a large, clear, protective bandage with just the tube hanging out & taped to his skin.  We go into the clinic each Tuesday for the two months of this phase.  For the first two weeks of each month, they will leave the port “accessed” (needle left in) when we leave and it will stay in for another 3 days so that we can give the chemo drug at home for a total of 4 days in a row each time.  

An organization called IU Home Healthcare came out to the house last night (Wed) and the nurse taught us how to go through the whole procedure.  It’s ridiculously complicated requiring the anti-nausea med, the chemo drug itself, and then a dose of blood thinner to keep the port from clogging, with a syringe of saline solution before each for a total of 6 syringes along with special gloves, alcohol wipes, disposal procedure, and a “spill” clean-up kit that is literally a Haz-Mat kit that looks like it’s from a nuclear power station emergency procedure.  The warnings, procedures, and equipment that come with this chemo drug (Cytarabine) are really scary – yet we’re pumping our little boy full of this stuff every day now.  “Mixed Emotions” doesn’t begin to cover how I feel about it.

Daniel’s been very, very tired since starting the new regimen and I’m pretty sure it’s simply his body using all its energy trying to deal with the poison being injected into him.  But he’s also had a low-grade fever that we’re watching closely as well.  Again, I think it’s simply his body trying to keep up with the treatments. 

On the positive side, his last set of blood counts showed his white cell count (a measure of his immune system health) being well into the middle of the normal range.  You may recall that we hope to see this number over 1000.  1500 is the bottom of the “normal” range, and it goes up to about 8000.  On Tuesday, Daniel’s was 4000.  So, as he has energy, we’ll be trying to get him out & about.  Two months of almost no activity & laying around in bed all day is taking its own toll on both his physical and mental health.  My conundrum though is two-fold; I want him to get out of the house and get some exercise, but on the other hand, (A) it’s cold and flu season and even perfectly healthy people are sick all over the place and that, of course, is the last thing he needs.  And (B) the last two times he’s had visitors over, we ended up in the Emergency Room both nights with high fevers.  I’ve since become convinced that these were NOT due to infections (the fevers only lasted a few hours and came on too fast to have been infections), but rather were simply from over-exertion.  So we need to be cautious about how much to “push” him in getting some activity back into his life.  We probably have only a week or less before we expect his counts to drop again from the new round of drugs (I refuse to call chemotherapy “medicine”!)  Once they fall again, we’ll be back to quarantine and more careful food regulations.  

So far, I’ve been able to make up all the time I’ve had off from work attending doctor clinic visits with Daniel, but I’m not sure I’m going to get it all made up this week.  I’ve got a list of things piling up at home that need to get done and I feel like I need about a week of sleep (though undoubtedly that’s mostly stress-related), not to mention simply wanting to spend time NOT at a hospital with my family.  Andrea and I do most of our talking through text and instant messages and I can’t remember the last conversation that wasn’t about medical, health, or home maintenance issues.  We wouldn’t even have known it was Valentine’s Day had the nurses not brought Daniel some valentines cookies & a couple of gifts.  Andrea did get to buy herself a very nice necklace however since there just happened to be a big jewelry sale in the hospital lobby that day.  It was nice to see what I bought her afterward!  :-)

Andrea continues to struggle with her own health problems.  She’s been fighting off a cold for several weeks now and had trouble sleeping last night due to on-going joint pain.  She’s got a lot on her plate right now taking care of Daniel during the day and trying to keep up with the house despite her own leukemia, severe lack of energy, and other health issues.  She’s doing a fantastic job, but the stress is taking its toll on all of us.

This coming Tuesday (2/21), I’ll begin teaching a new evening course through the book of Genesis for 8 weeks.  I’m REALLY looking forward to it for lots of reasons, but also realizing it’s going to be a real challenge to keep up with everything else going on too.  I believe strongly that God has brought me to this decision and will see us all through it, but it’s definitely another leap of faith to add this log onto the fire right now.  

We remain eternally grateful to our “Wonderful Counselor” Who has kept us firmly in His care, prevented us in all ways from being tested beyond our endurance, and promised that “A.L.L. things work together for good…”  We also send our sincere and abundant thanks and love to so many family and friends, including many new friends we’ve never even met, for all you have done for us and continue to do.  We are constantly encouraged and lifted up by your prayers, notes, comments, and support. Again – thank you!

PRAYER REQUESTS:

1.   Complete and total health & strength for Daniel – Body, Soul, & Spirit

          Specifically:

          a.       Rapid healing of mouth sores
          b.      Better energy levels
          c.       Protection from infection
          d.      Freedom from nausea, fever, & other side-effects of chemo drugs
2.       Health and energy for Andrea – Body, Soul, & Spirit
3.       Help for Andrea with household chores
4.       That I would continue to stay in good health and be able to keep up with, well, everything
5.       Spiritual protection from the warfare that always comes with me starting a new Bible class
6.       That we would all draw closer to our Lord Jesus Christ through these trials and learn what lessons He has for us.
7.       That He would ultimately be glorified in all we do and all that happens.

P.S. Please leave comments for us and let us know you're there. We all love to read them!

Glimpses of Eternity

Most things that come into our lives, whether good or bad, come and go without us ever really recognizing any eternal significance.  We tend not to question the good things that come our way; they’re good after all, we enjoy them for what they are and probably don’t even care whether there is significance beyond that immediate joy.  But the hard times give us pause. We wonder, perhaps hypocritically, “why did this have to happen?”  And we of faith look to God for answers.  Usually, we don’t get specifics other than a reassurance that God is in control; that all things work together for good; and trials produce patience and character and draw us closer to God.  And that is enough.  And it should be enough.  God owes none of us an explanation for what He does or why He does it, and His Master Plan is just that … HIS.  We couldn’t grasp it if we wanted to in our limited minds, knowledge, and existence.

Perhaps one of the most important lessons that can come from such times is this very recognition – God owes us no answers – and we MUST make peace with that fact.  The TRUST He expects of us, after all,  doesn’t come with qualifications: “I’ll trust you IF You tell me what’s going on”, or “IF You explain to me the eternal significance”.  Trust means we believe that God is God and we’re not.  Hope means resting in the knowledge that the future will be good because of what we know about God’s nature … so much so that we can be assured “that ALL things work together into a pattern for good” because God is Who He is.  He is loving and He is love itself.  He is righteous and righteousness itself.  He is graciousness and He is grace itself.  He is good and He is goodness.  For Love, Righteousness, and Grace do not exist apart from Him. They have their definition and existence in His character.  As I wrote in an earlier post, we can never hold God’s actions up against some independent standard of love, or righteousness, or grace because no such standard exists.  He IS the standard and these ideas exist in the first place because of Who He is.  Without God, there is no such thing as love or righteousness or grace.   And one of the most important and foundational truths that we can learn as we see Christian maturity is to trust Him for all things, at all times, in every situation, without explanation, without excuse, and without WHINING!  

The purpose of this life is NOT to make us happy and give us an easy time of it.  In fact, we’ve been promised quite the opposite – that this life will be difficult, the path will be narrow, and it will be filled with trials.  Learning these truths does not make it much easier to go through the dark valleys, but it does help process the things God allows to come our way and helps keep our focus on the Way forward.  I’ve heard it taught that we shouldn’t pray for God to remove the trials from our lives, but rather that the lessons they bring would not be lost.  That’s sound wisdom.  I’m afraid I’m not quite there yet though and I most certainly find myself regularly praying for deliverance and a swift end to suffering, be it my own or my loved ones.  Maybe one day I’ll be better at that part.  But when the answer comes back “Not yet”, it’s a little easier to understand why when I recognize my place in His eternal perspective.

Nevertheless, every once in awhile, He does give us the gift of a small glimpse into His plan – into the eternal clockworks of the awesome machinery that drives the universe forward according to His will and design.  We should always be extremely grateful when He allows us such insights, no matter how tiny.  And the glimpse I received a few days ago, if that’s even what it was, is indeed a tiny one.  But it brought me great joy to see the working of God’s hand in our lives and to be able to assign even a little “purpose” to an event that had actually caused great pain in my family’s and my lives.

If you’ve followed recent event in my blog here at all, you probably know about the misdiagnosis of Daniel’s leukemia that happened a couple weeks ago.  After having been told that Daniel’s condition was a more easily treatable type of disease and that the current success rate was in the 90-95% range, we got a devastating blow.  A very specialized cytogenetic test was done and when the results came back, they indicated that Daniel had a rare condition that was linked to a much lower probability of success.  In an instant, his prognosis dropped from 95% down to 60% or lower.  I briefly described the sensation of the world collapsing in around me in that instant and my own inability to even breathe.  There were some sleepless nights, enormous amounts of prayer, and a wrestling match with Fear that would have put Rocky to shame.  All of this served as an indicator of my own poor faith and shone the light on a number of areas that needed improvement.  But it also prompted a single text message to a good friend that set off a chain reaction resulting in a trip the following day to see an Amish healer named Solomon Wickey.  

I wrote briefly about this trip in an earlier post, but to summarize, we were granted a rare “emergency” appointment with this man who is known and respected literally world-wide for his healing ministry and has literally healed thousands of people from life-threatening and terminal diseases over his 30+ years of ministry.  We were in his presence for not much more than 10-15 minutes and he pronounced Daniel as having been “released” from the disease that was threatening his life.  We weren’t sure what to think.  We’re STILL not sure what to think.  I continue to await God’s direct confirmation to me of Daniel’s complete deliverance from Leukemia, but until that happens I feel I have no choice but to continue forward with the traditional approach – hoping – praying – believing that he is in fact completely healed.  And though the doctors reported only a few days later that Daniel had in fact responded ASTOUNDINGLY well to the first 2 weeks of treatment and was unexpectedly already in complete remission (they neglected to use the word “miraculous” of course! :-) I still don’t feel I have enough confirmation to pull him off of the chemotherapy.  Only about 2 days later, the doctors discovered a mistake in the interpretation of the genetic testing results and immediately came back to us stating that he was NOT in a super-high risk category after all.  His prognosis was still in fact in the 90-95% range and they apologized for the error.  Obviously, this was a huge relief to everyone and we thanked God for, in a sense, restoring our son to us (ala Abraham & Isaac in Gen 22)  But anyway, that’s not the point of this story.

It was a couple weeks later before it finally dawned on me that, had the doctor’s error in interpreting the test results not occurred – the tiny mistake that made for perhaps the darkest and most difficult weekend of my life thus far – I almost certainly would never have made the trip up to see Solomon Wickey.  And though I don’t know the results of that trip for certain, I tend to believe that some miraculous things happened at that time in all our lives.  And so the “lights came on” about how, in just this tiny little instance, God in fact kept His promise in a powerful way … that something that had the appearance of evil DID in fact work together into a pattern for good.  His hand was there at work the whole time, through the whole ordeal.  Not only was the trip up to see Solomon prompted, but I learned a number of things about areas in my own life needing work as well as some areas where God has already made improvements in me.  An enormous amount of prayer support was generated, and also wheels were set in motion that we believe will be bringing forth a series of events to help bring awareness, raise money, and bring additional glory to God through some good friends of ours (but more on that another time).  

It was literally in the same few minutes that I received this small revelation that God brought another thought to my mind.  If you’ve read my previous blogs, you’ve already seen this, but I had been contemplating (for obvious reasons now), Romans 8:28, “And we know that all things work together for good to those who love God, to those who are the called according to His purpose.”  Suddenly, the word “ALL” came to the center of my attention.  I’ve literally heard entire sermons preached on the meaning and significance of this word in the context of this passage.  It’s a powerful word.  But what made it especially significant to ME at this particular point in time was the recognition that these 3 letters A-L-L are also those used in the abbreviation of Daniel’s particular brand of leukemia.  It’s properly titled “Acute Lymphoblastic Leukemia” – A.L.L.  And so, right after God’s revelation of how He had used the doctors’ mistake to in fact bring a unique blessing into our lives, He pointed out that … EVEN “A.L.L. things work together for good for those who love God…”

-          - Tim -