Thanks for Praying for Joey Keller

My apologies for not getting to this earlier, but I wanted to extend my personal thanks - and forward a "Thank You" from the Kellers as well to all who participated in our prayer events over the past 2+ weeks.  The Round-The-Clock (RTC) Prayer Vigils for Joey ended on Sunday at midnight. It was a fantastic success and we saw God do some truly amazing things!

For those who may not have been following closely, Joey Keller is a 9 year old little boy who is a friend of Daniel's.  His parents Nick and Elizabeth have also become friends of ours over the past several months.  Daniel and Joey met one another in our homeschool co-op and Andrea and Elizabeth knew one another through the boys' shared classes.  Joey has been fighting a severely aggressive form of brain cancer for the past few years and has suffered multiple relapses (which typically drastically reduces the chances for successful recovery.)  The odds of him beating it have been stated as less than 2%.  When Daniel was diagnosed with leukemia back in January, our paths began to cross much more frequently with the Kellers at Riley Children's hospital and eventually Nick and I met and began to get acquainted as well.  Over the past several months we've all gotten to know each other on a level that's difficult to describe, simply due to our shared journey: navigating the medical community, cancer, faith, and all the rest that comes with staring a parent's worst nightmare in the face, 24/7, for months (or in their case, years) at a time.

On the evening of Monday Sept. 24th, after having posted a fairly positive report of Joey's health and progress, Nick posted a single line that nearly stopped the hearts of all of us who follow his CaringBridge site with these words,

"Joey either had a stroke or seizure. Just took EMS to Riley. Going to get ct scan. Gotta go."

(You can read the history of journal entries here:  http://www.caringbridge.org/visit/joeykeller)

I have set up to get notifications from the Kellers' CB site on my phone and in email, but somehow I missed this and a couple of follow-ups until the following morning when Andrea texted me about it.  I hurriedly read through the past few hours' posts and was in tears at the situation that was being described.  My heart always misses a couple of beats when the Kellers post a CB entry (not a great demonstration of faith there is it?) but this time just hit me like a truck.  To the best of my knowledge, nobody, to this day, knows what actually happened.  While sitting in the bathtub that evening, Joey became unresponsive.  He was alert & moving, but acting very strangely and not responding to Nick's voice or actions.  They immediately called EMS and rushed him to the hospital.  His situation went downhill quickly and soon he was nearly catatonic, having seizures, and then stopped breathing altogether.

Every test they ran came up blank as far as causes.  The cancer in his brain stem had been causing partial paralysis in various parts of his body recently, but an MRI & CT scan showed that it had not progressed at all.  There was no sign of seizure activity in his EEG even though they were watching it happen.  In short, they were all stumped but doing all they could to keep him alive.  The doctors in the Pediatric Intensive Care Unit (PICU) told the Kellers they should expect the worst and to being making "preparations".  At one point, they were even telling Nick and Elizabeth that they needed to start considering "pulling the plug" on Joey's life support.  But Nick and Elizabeth refused to give in to this loss of hope and continued to pray and pray and pray.  Their CB posts during this time convey the desperation during those dark hours.

Even with as much as Andrea & I have been through this past year with Daniel and the initial ups and downs of the doctors assessments of his "survivability", I know I cannot begin to imagine what the Kellers have been through.  The doctors were regularly conferring (i.e. "guessing") about causes, offering widely varying theories and just as differing treatment ideas to the Kellers.  All this was compounded for them by having gone days ... up to at least 5 at one point ... with virtually no sleep at all.

Early in that first week, I felt a burden within my own heart to rally praying people for Joey.  Now let there be no mistake about my meaning here - there is an absolutely GINORMOUS team of people, literally from around the world, praying for Joey on a full-time basis.  The vast majority of them have no clue who I am and many have known the Kellers better and longer than we have.  But the burden I had was to see something "formal", something "organized" to get people plugged-into so that we could be sure (and the Kellers could also know) that there was actual Round-The-Clock prayer coverage for Joey ... every second of every day.  I asked around to see whether something similar already existed or if there was any single point-of-contact for the veritable army of people around the world collectively known as "TEAM JOEY".

Though a few people had previously organized different events: T-shirt sales (yes, Team Joey even has their own T-shirts!! :), food ministries, and other things, I was unable to find anyone organizing prayer (though many, MANY were praying.)

A couple more days slipped by and then I remember very clearly hearing the Lord's voice telling me that nobody else was going to do this and it was MY JOB to get it done.  "OK, OK, OK! ... I have no idea how to do this, but I'll do what I can."  I was thinking that I really didn't know how to get in touch with people and wondering whether anyone would even care about what I was trying to organize since no more than a handful even knew me from Adam.  Now God never actually said this, but at that point, there was definitely a kind of "If you build it, they will come" moment. :-)  Corny, I know, but it at least gave me something with which to move forward.

The only place I knew to start was Facebook - that amazing source of communication, information, and (as often as not) GRIEF most of us have come to love and hate.  However, it was clearly the best (and possibly the only) means of trying to connect with the hundreds - possibly thousands - of Team Joey members out there who had no idea who I was.

Now if you're following this blog of mine, at this point, the story is probably starting to connect for you with what you've seen here over the past couple weeks.  Without going into a lot of detail, I setup a Facebook "event" to invite people to in order to pray for Joey.  I divided up the first 30 hours or so (Sat evening through Sunday night) into 1/2 hr time slots and invited people to sign up for a specific slot.  I posted notices on Facebook, in our CaringBridge site, and here in this blog and asked others to pass it on as well.

We didn't get them all filled in time, but we did pretty well as word began getting out and others reposted the info and invitation.  Sunday morning I set up 5 more such "events" to get through Friday of that week (10/5).  It was a clumsy way to do the sign-ups because people could only request what slots they wanted in posts & comments and then only Andrea & I had to manually edit the event info to add their names.  It was a VERY busy weekend for the two of us and we scrambled all day Sat and Sunday to keep up with the requests.  But it was a WONDERFUL burden to bear.  The entire week filled up in just a few hours really, and we were simply in awe of watching God work as we saw the news spread and people respond.  Something like 292 half-hour time slots were filled and many had multiple people in them.  It was abundantly clear that this was God's work from the beginning, and my part was more like just pulling the cork out of the hole in the dike.  He did the rest and we were more like bystanders as people clamored to get behind Joey, Nick, and Elizabeth in this organized prayer event.

On Tuesday (10/2), we (the Millers) were all at Riley for the start of Daniel's Maintenance Phase treatments and decided to try an impromptu visit to the PICU to see if we might possibly make contact with Nick and Elizabeth (they had no idea we were coming, and we weren't even sure we could FIND them, much less get into the ward.)  But as grace would have it, we did find them, and although Daniel wasn't able to come in, Andrea & I were able to spend nearly an hour with them, discuss all that had been going on, and even pray with them.  Their exhaustion was so evident that all of us were in tears during much of the visit.  But it was such a blessing to connect with them, to see first hand what was happening and get a real "inside" report of what they'd been going through and what they needed.

Perhaps the most important thing we took away from that visit was that the prayer "war" we were fighting for Joey's life seemed to be far more spiritual than it was physical.  This was an important revelation to us and, again, we understood that God had orchestrated the visit for a specific purpose He had in mind.  (We actually probably shouldn't have been able to get into to see them as non-family members - but when we showed up, a series of "coincidental" events transpired to get us right in to see them and none of the staff even thought twice about our being there.  Amazing!)  But we needed to get the word out to the prayer team that they must focus on the spiritual aspects at least as much as the physical ones.  The Kellers described a "darkness" and depression and negativity that permeated their room and the attitudes of most of the doctors when they came in.  It was having a visible effect on Joey - even before he was conscious, and the words of Scripture in Eph 6:12 became a rallying point for us and we tried hard to communicate this to the others in the prayer team.

Not surprisingly, as we posted the information from the Kellers, many people resonated with it and several had even stated that they had been sensing the same thing in their prayer times.  This kind of "resonance" and other such confirmations were a common experience during the setting up of the prayer vigils as well - I got several really appreciative notes from people who'd also been burdened with wanting to see something more organized set up to rally people around the Kellers in prayer.  So again, we were given a little glimpse into God's work "behind the scenes" that had been going on for quite awhile.  He just wanted someone to do something as simple as raise up a banner for the troops to rally behind and they came flocking.  In this case, the banner consisted of a few Facebook events with titles about praying for Joey.

We saw people from all over the world and all walks of life - most, complete strangers to one another - come together for a common purpose under a common banner and FIGHT ... on their knees ... for Joey's life, health, and well-being.

As the days went by, we all waited on pins and needles for Nick's CaringBridge posts to hear how things were going.  They were excruciatingly far between (for certainly understandable reasons), but we all kept praying anyway.  And very quickly (though I know it seemed like an eternity to Nick and Eliz), we saw Joey move from a point where nearly everyone close to him thought it might really be "over" - to a nearly full recovery against all odds and a great deal of medical "advice".  We saw an entire medical team astounded by his miraculous recovery.  We saw dozens and dozens of people step up and volunteer for time slots as individuals, as couples, and as families - from late at night, to the wee hours of the morning, to commutes back and forth to work, to evening family times ... people filled up the slots and prayed and prayed and prayed.  And most importantly, we saw Joey recover from about as close as anyone could come to death and then back away.

Near the end of that first week of the prayer vigil (week & 2 for the Kellers), Joey was doing much better, and by Thursday, he was finally off the ventilator and breathing on his own again ... but we wanted to see him HOME!  Several people began to ask about continuing the vigil for another week - "praying him home" as it were.  I'd been thinking about the same thing and was grateful for the confirmation that I should continue for another week.  This time though, some friends pointed me to a website that would make the process MUCH easier on Andrea & I so that we didn't have to process all the requests manually; rather, people could sign-up themselves for the slots they wanted and see the results immediately (it's called SignUpGenius.com - it was free and really a big help for Andrea & I!)

The 2nd week of the vigil though, never completely filled up. That was disappointing, but it was also clear that we had moved though the worst of it and Joey was doing MUCH better and we were confident that God was working through all that prayer to bring Joey back out of this horrible ordeal.  The fact that so many were willing to sacrifice of their time for a whole week - long enough to get Joey off the ventilator and back on the road to recovery - was amazing and enormously appreciated.  Those that continued with us through the second week were, I believe, instrumental "participants" with God in getting Joey the next step - which was to return home.  Now we do know that MANY others were praying as they often as they could but were unable to sign up for specific time slots for various reasons.  We know also that MANY, MANY others pray for Joey regularly and either aren't Facebook subscribers or simply never got the word of our prayer vigil.  And we know that God most certainly worked in many OTHER ways than these particular events.

When Nick posted a new update on the following Tuesday (10/9) that Joey was intentionally "messing with" the nurses by holding his breath to set off the monitor alarms just to watch them all come running in the room, and then laughing mischievously at what he'd done, I laughed till I cried.  It was such an incredible relief, such a JOY, to see Joey "back" among us (and as Daniel frequently noted to us, Joey's name is strikingly close to the word "Joy" and often pronounced in a way that is indistinguishable from it!)  The doctors had told Nick and Eliz at one point that there was almost certainly irreversible brain damage after the seizures and that, even if he did recover, "it wouldn't be the same Joey".  This of course was DEVASTATING for the Kellers to hear and all of us as well.  But Joey's journey has been an exercise in faith from beginning to end, and once again, they refused to accept that prognosis and prayed all the harder.  Seeing Nick's post on Tuesday 10/9 was nothing short of miraculous for all of us who had been watching them.  God didn't really seem to care about the doctors' prognostications and seemed to delight in demonstrating to us all that medical "odds" and the wisdom of Man mean nothing to Him.

I should note here that this is not to say that we are not all immensely appreciative of modern medicine, doctors, and the technology available to us.  We certainly are.  Both my wife and son have been direct beneficiaries (and myself secondarily thereby) of the astounding advancement of this technology in recent years as they both go through chemotherapy as well.  In this case however, I have been pretty critical of some of the things that the Kellers' medical team said and did ... some really stupid things in my opinion ... things that should be criticized and from which several lessons should be learned.  But this is not to impugn medicine or the medical community as a whole and I want to make that clear.  Nevertheless, as wonderful as this technology is, it is nothing in comparison with the power, and will of God our Father and Creator.  And that is perhaps the greatest lesson any of us can take from the events of these past few weeks.

Joey was released from Riley the following day (Thurs 10/11). Though he's still on a feeding tube due to difficulty swallowing, he's been breathing fine and slowly regaining his memory (a great deal of which was lost during the worst of the ordeal in the hospital.)  Most of this seems to be confined to fairly short-term memory, but in the picture below, Joey is instructing some family members (by memory) how to rebuild a rather large and complex LEGO set of his.  God is good. :)


If you're still with me - thanks for reading.  I know it's been a long entry, but I wanted to capture a few of the amazing details of these past two weeks - at least from our perspective - and bear witness to all that we've been privileged to watch God accomplish.  I know it's been very beneficial for our family as well!  After 9 months of being pretty focused on ourselves with all that Daniel has been going through, it's been good to get the focus off of us and onto helping and serving someone else.  And few others are as near and dear to our hearts and our own journey as the Kellers are.  I must confess that we've never been very good at praying together as a family - despite many attempts to make this work over the years.  Yet the past two weeks have been a wonderful way for us to rally together over an important cause at least once each day.

We've watched Daniel grow in his own prayer life by leaps and bounds through this and establish a special kind of "prayer connection" with Joey that only another cancer survivor can really have.  One of our prayers throughout this ordeal has been that the lessons God has been teaching ALL of us through this time, would not be lost.  We pray this for Kellers, for ourselves, for our prayer team, and for all of TEAM JOEY moving forward.

Thank you for your prayers.  Thank you for your kind words and encouragement to us.  And thank you for your willingness to give - whether thoughts, time, or that special part of your heart that goes out to others with true intercessory prayer.  We especially thank those of you who have been our own family's regular supporters and intercessors and may not have known the Kellers previously, yet joined forces with us to pray for Joey.  Thanks also for putting up with my continual pestering for more prayer for them!  And as always, we thank you for all you've done in praying for and following our story as well.

ONE FINAL NOTE:
Though the Round-The-Clock Prayer Vigils have ended, we have established a more or less permanent page for those praying for Joey.  We'll use this to help get word out for specific prayer requests, share our thoughts, info, experiences, and "praise reports" in interceding for the Kellers, and post any future events if the need arises.  So please be sure to "like" this page if you'd like to continue with us or just follow what's happening with the prayer team.  https://www.facebook.com/PrayingForJoeyk

A similar group was formed by friends of ours for Daniel here:  https://www.facebook.com/groups/305553332819553

And you are always welcome to join either our or the Kellers' CaringBridge sites here:  http://www.caringbridge.org/visit/joeykeller

and here: http://www.caringbridge.org/visit/danieljmiller

Grace and Peace in Jesus,

- 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

A Good Friday for Daniel

(Mirroring from http://www.caringbridge.org/visit/danieljmiller/journal)

A Good Friday for Daniel:

Daniel is doing much better today.  His fever appears to be gone. However, his white cell count has dipped dangerously low. It was right on the borderline of an automatic hospital admission yesterday, but they let him go home in the end since his fever appeared controlled, but only with the warning that if it began to climb again, we'd be admitted immediately.  So we're grateful that the fever looks to be gone, but it does look like quarantine for Easter.  At least we're glad to not be in the hospital. 

Last night, he'd started to feel better, so I gathered everyone together to read the Easter story from Matthew and then we watched "The Passion of the Christ" together.  I was apprehensive letting Daniel see this and described to him what would be happening.  He was insistent that it would be OK, so we went ahead.  He was fine with it and when we talked about it afterward he expressed, or course, that he hadn't realized what Jesus really went through and actually felt more at peace and "happy" for having spent the evening learning about God. (insert happy face on dad at this point. :)

As always, THANK YOU all for your prayers.  Please continue to lift him up during this time of dangerously low immune system, and having to miss the Easter festivities with the rest of the family.

We are most grateful for this wonderful Easter weekend and that we will be able to spend it at home with our family and our gracious RISEN Lord and Savior Jesus Christ.

HAPPY RESURRECTION DAY to all!

Daniel, Andrea, and Tim

Back to In-Patient Status

(Mirroring our CaringBridge Entry here: http://www.caringbridge.org/visit/danieljmiller/journal)

 Back to In-Patient Status

Sorry the news has been slow in coming lately. It's not because there hasn't been any - just struggling to keep ahead of it recently!

Last week, Daniel received his medication for the osteoporosis, something he only gets once every 4 mos or so.  He was almost immediately a "new kid" again. He was feeling great, active, and happy - a real joy for all of us.  This rebound has been typical of getting that particular medication and it was the last round, when he didn't bounce back, that was the first clue leading us toward the leukemia discovery.  So this was a breath of fresh air for us.

About that same time, he received his "little gift" from the Indiana Make-A-Wish Foundation (they're awesome) which was a giant Star Wars Lego kit.  He had it built in less than 24hrs of working time and was very eager to show it off at his homeschool co-op's Lego Club on Thurs.  Dad (being the over-protective meany) was reluctant to let him go, but caved in the end simply because it was SO important to Daniel.  He was ecstatic ... a little too ecstatic.  Not only did he go to Lego club, but also participated in PE that day. He had a ball, and I was really glad for him. 

I was also expecting the return of a fever that has typically shown up in the evenings after times of "over-doing it".  It didn't show up until the following day and was fairly minor, so I didn't think much about it.  acetaminophen had usually done the trick and all was good.  But it didn't this time.  It kept coming back, and by mid-day on Saturday, it was hitting 103 so we headed to the ER again.  Same story - drew blood, start cultures, give him an antibiotic, and, because his white cell counts were good (strong immune system), sent us home.  But this time, unlike previous times, the fever wasn't gone.  We watched it through the rest of the weekend and up to his clinic visit on Friday - always toying with the threshold at which we're supposed to take him in.  The acetaminophen would usually help, but before long, it was back. 

It was around 100 at his clinic visit on Tuesday, but everything went ahead as planned.  Long-story less long, today (Thurs), we were back in the clinic after hitting over 103 last night and they've decided to admit him to the hospital.  In the past 5 days, his white cells (which had been going up) suddenly plummeted from 2300 down to 510 (normal range is 1400-8800).  500 Would be an automatic admission to the hospital.  When they also found his blood pressure to be low (and dad said he'd prefer they keep him to watch him anyway rather than running back and forth to the ER) they decided to admit him.

Unfortunately, having been spoiled last time, he was pretty unhappy to find he has a roommate this time, an older (teenager) whom I haven't met yet.  Andrea has been with him all day and I'll be heading that way shortly (still trying to make up time at work for having gone to the clinic with him on Tues) and staying the night with him.

The docs' best guess is that it's a virus, but the screwy blood cell counts, and lack of any other symptoms have everyone scratching their heads.  At this point, it's simply a waiting game to see how the fever and blood counts do after he gets fluids & antibiotics.  We were told that 99% of fevers never have their cause determined. I'm not sure that's particularly helpful, but it is more comforting than hearing "wow, I've never seen anything like THAT before" - which I've heard way too many times in my own life as well as about Andrea!!  :)

Nevertheless, we're confident that God is still God and still in control and Romans 8:28 is still there (I just checked!)  We are thankful for so very many things, and we can still praise and trust Him through all things.  We're here for a reason, and we trust that He will bring us through in a way that glorifies Him and blesses us ... perhaps later if not sooner ... but always a certainty.

We appreciate your prayers for, among other things:

1. Our wonderful Father would be glorified through this and all things,
2. The cause of the fever and low blood pressure, whatever it is, would curl up and die!  NOW!!  :)
3. Daniel's emotional health and endurance. He's really been struggling lately with depression & being overwhelmed,
4. Andrea's own health, energy, and endurance (it's tough enough to go through this for your child without also struggling with having cancer herself!)
5. Strength, perseverance, peace, and joy for us all.
6. Being able to keep all the "logistics" worked out between Andrea & I with work, the house, the dogs, etc.
7. That I would be able to keep on top of lesson planning for my Bible study.

- Tim -

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 -

An Update & Some Prayer Requests

First, a huge thank you to everyone who has posted a comment or guestbook entry to the Caring Bridge site or the blog.  Please know that we read EVERY ONE and frequently go back through them again. Your comments, encouragements, and just letting us know that you're praying for us are absolutely wonderful.  Thank you all.

Daniel has been doing well and tolerating the chemo treatments better than average with regard to side effects.  Nausea has been very infrequent, and hair loss has only recently begun to show.  It's coming out fairly fast now though and he's certainly not happy about it.  The biggest problem is the ravenous appetite that the steroids give him.  He's put on about 10lbs in the past 4 weeks - a 16% increase in weight roughly equivalent to a 180lb person gaining 30lbs so you can imagine the effects on his body.  Combined with the bloating the steroids produce around the face and his gigantic belly, he's quite the site and becoming more and more uncomfortable.  It's exacerbating his back pain and the new brace that was made for him doesn't really fit at all because of it, so he can't wear it.  It actually causes him pain to put it on because the bad-fit forces him into an even more uncomfortable position.  The back problems continue to be a concern and I'll be pushing for more investigation / action on this front with the doctors this Friday.  This was one of the original problems that I was trying to get to the bottom of when the leukemia was discovered, but the docs don't believe they're related.

He thinks and talks about nothing but food and I'm having to be more and more hard on him about limiting portions, refraining from snacks, and drastically cutting back the total intake.  I'm really worried at this point that the food intake and weight gain will be producing it's own problems if it continues unchecked. 

We believe that this Friday will be his last steroid treatment - at least for awhile as we come to the end of the first phase (called "Induction").  He has another bone marrow aspiration and biopsy scheduled for Friday and, assuming the results come back as positive as we've been seeing, we'll then move into the "Consolidation" phase.  They haven't told us much about it yet, as the exact details are very dependent on these test results.  We know that it's still fairly intensive as far as the chemotherapy, but supposedly not as bad as this first phase.  I'm hoping we'll know all the new details on Friday.

This weekend, one of his good friends came over to play for a few hours and some of the girls from church his age made him a beautiful friendship quilt.  We were all REALLY impressed.  It was really good for Daniel too as I've more or less had him under reverse quarantine for a month now.  The good news is that his last blood test shows his counts beginning to make a slow climb again and the docs believe this is demonstrating the recovery of healthy bone marrow.  We want to see them continue to climb back toward the healthy / normal region.  Daniel is praying for the same thing just so he can have Taco Bell again!

Prayer Requests:
1. Continued good results moving toward (if we're not already there) complete and total healing
2. Wisdom, Courage, Endurance, Self-Control, etc. for Daniel with regard to food intake.
3. Sleep for everyone!  (Andrea & I tend to think/worry too much, & Daniel has insomnia as a drug side-effect ... so he lays awake all night thinking about food.)
4. Solutions / healing / wisdom about the ongoing & increasing back pain.
5. That Daniel will be able to deal well with the hair loss & other side effects - especially the visible ones - to his poor little body.
6. That all the lessons God has for us in this would be well-learned and that we as a family would continue to keep and protect the JOY of the Lord despite circumstances & worldly "wisdom".
7. That God would be glorified greatly through all this, and that others might come to know Him or know Him better through it.
8. Time management for me (Tim) as I try to balance work, time with doctors & hospital visits, & preparing for my upcoming Genesis class.

Kicking a Guy When He's Down

(Re-posting our latest Caring Bridge entry)

While Andrea and I were out running around today trying to get the house back in order enough to move back, my folks were gracious enough to watch Daniel for us for much of the day.  Unfortunately, while I was out and about, I got a call from Daniel's grandparents that he had fallen in the house and injured his back again.  I couldn't tell how bad it was over the phone, but clearly he didn't want to move and was asking for me to come home to help him get to the bathroom.  Luckily, I wasn't that far away! 

His back injuries of course, are what started us down this whole road about 2 years ago leading to the initial diagnosis of Juvenile Osteoporosis - an extremely rare disease in children.  It took nearly a year and 6 different doctors to get him diagnosed correctly and on the right treatments for that.  But when we realized that he wasn't growing or putting on weight and seeming to grow more and more lethargic, we began seeking additional help. Clearly the osteoporosis wasn't the whole story.  A year later, here we are with leukemia and we're STILL not certain we've gotten to the bottom of things.

His bones were responding well to the osteoporosis medication, but now that were on chemotherapy, one of its side effects is that it can again lower his bone density.  In fact, the medication he has been on for the osteoporosis is often given to leukemia patients anyway for precisely this reason.  So we have no idea what shape his bone density is in at the moment and to have another back injury like this really a complication we just don't need.  Previously, he'd actually had a number of compression fractures in his spine that helped lead to the correct diagnosis (once we found a doctor that could actually read an X-ray ... but don't get me started on that!)

He's resting well now and a combination of ice, heat, and Tylenol with Codeine seems to have done the trick for the moment.  Tomorrow will likely tell a clearer tale.

Daniel has really been struggling with depression lately and it's difficult to get him to talk about his feelings ... but I keep prying.  Today's "insult" certainly didn't help.  But it did give me the opportunity to open the subject more and have a good talk with him about keeping our joy and peace even in the midst of trials.  We talked about taking every thought captive, about the peace of God and how it's different from the peace the world offers, and about not letting the devil, or circumstances steal our joy ... or any other of the Spirit's fruits from us.  It seemed to cheer him up a lot and we talked and laughed for a good 1/2 hour or 45 minutes.  Then he went straight to sleep and is now resting soundly.  A real blessing to see after seeing him struggle so much recently to get even a few hours of sleep.

Andrea returned home just a few minutes ago from cleaning at the house all day long.  She's completely beat. A HUGE THANK YOU to our two friends who were able to drop by today for a few hours to help. Your generosity is GREATLY appreciated! 

I had hoped to be able to get us back into the house by the end of this weekend, but the situation just hasn't quite worked out.  We're getting closer, but there's a lot left to do just to satisfy me that things are CLEAN enough for Daniel's severely compromised immune system.  But we're closer and my wonderful folks have been extremely patient in letting us stay with them while the house is under construction.  We certainly couldn't get through this without all the wonderful friends and family around us.

Thank you all for your prayers and continued support.  We continue to solicit and value your prayers the most.  Please pray for:
1. Daniel's continued recovery and lessened effects from the chemo drugs.
2. A quick recovery from today's back injury
3. That he (and all of us) continues to keep a positive attitude and trust in the Lord for the future - focusing here and now on peace and joy rather than negativity and despair
4. That my and especially Andrea's health would hold out while our lives are so disrupted as we try to get the house back in order and get back to some level of "normalcy" as soon as possible
5. Our finances.