A Long Awaited Day

Tomorrow, Tuesday, March 23, 2015 marks one of the most important, and long-awaited milestones in this long, long journey of cancer and chemotherapy with our son Daniel.  Though it's not exactly the end (more on that in a moment), it marks the LAST , God willing) chemo infusion treatment in his treatment protocol and therefore, the end of the most stressful aspect of the journey for him (and us in many ways).

We're due to be at the hospital by 6 am (uggh!) to get the registration and prep started for a surgery scheduled at 8:30 to remove his "port".  After registration, we'll head to the Hematology/Oncology (HemOnc) clinic for the last round of IV chemo drugs around 7:30a, and then off to surgery to have the port removed.

We'd very much appreciate your prayers for us tonight and tomorrow as we approach this last big hurdle.

This ridiculously long, convoluted, and difficult health journey with Daniel started over 5 years ago when he began to have acute and debilitating back pain issues. Ultimately it was discovered that he'd broken his spine in multiple places due to juvenile osteoporosis - something extremely rare in children and which we went through multiple doctors and many months before even getting a diagnosis at Riley.  Incidentally, that diagnosis was obtained in roughly 5 minutes once we got to the right doctor!

But as we were seeing success with the osteoporosis treatments in the Fall of 2011, he began to have other symptoms that weren't related to the osteoporosis and which he had a really hard time getting anyone to take seriously.  Without rehashing all that, it turned out to be leukemia as we discovered on Jan 6, 2012 - also due to finding the right doctor at Riley.  If you're interested you can read the beginning of this journey at my first post here.

I will always wonder whether it was the huge doses of x-rays and other testing he received during the early days of the osteoporosis that actually gave him the leukemia.  Radiation - particularly X-rays, are a known cause of leukemia, which is a cancer of the blood (bone marrow specifically).  However, so are certain pesticides and our yearly inundation with them from the farm fields to the west of us have had us wondering about that too - which might also explain why Andrea came down with a slightly different variety of leukemia just a couple years before.

Regardless of the cause, it's been a wild ride of pain, suffering, fear, and heart-ache ... each of which our wonderful God has powerfully outshone with His grace, love, joy, blessing, protection, and calls to faith.  Many of these have come to us directly via His "Wonderful Counselor" residing within us, and many other instances of each have come through the Body of Christ as our brothers and sisters have gathered around us and helped us bear these burdens.

Examples like this one  illustrate just a bit of the many and amazing ways the Lord has shown Himself far bigger than any situation we have or ever could face. The outpouring of love and grace from friends, family, and the Lord Himself have made this journey an amazing one.  I won't say I wouldn't wish for it to be any different ... I do.  I would MUCH rather this never happened.  Maybe someday I'll have enough faith to think differently, but I at this point, I could never bring myself to wish this journey upon any child or parent - and far more so the journeys of those that have been so very much harder than ours ... of which we've personally known several along the way.

Yet now, barring a relapse, God forbid, we have come to the last IV infusion of these wonderful / horrible drugs.  If you've read any of my blog on this subject, you know I have a love-hate relationship with these chemo drugs.  I refuse to call them "medicine", and yet I'm also confident they are the reason I still have a family.  It is almost a "miracle" of medicine that these drugs exist and are able to do what they do.  Not long ago, this disease was a death sentence, plain and simple.  I just desperately wish we were farther along than we are as they are incredibly costly - and the financial expense is the least of what I mean!

On the very first day of chemo treatment, Daniel underwent surgery to install a "port" in his chest.  Basically, they knew he would be stuck with needles so many times over the next 3 years that it would destroy his normal access veins.  So they installed a kind of pin-cushion in this chest that can take all the needles, is easier to access, and provides a direct line into his blood stream.  Tomorrow, after the last IV treatment, the port comes out.  It's a bit of a mixed blessing because he'll still be back every month for a blood test which will now have to come from his arm.  But they feel the port has risks (infection) associated with it and is no longer worth it once the chemo protocol is finished.

For the past 2-1/2 years or so, he's been in what they call "maintenance" phase which consists of

1. Daily oral chemo drugs
2. IV infusion once a month
3. Spinal tap & injection every 3 months (it was every month or more for the first couple years)

The last spinal took place last month (Feb).  Tomorrow is the last IV infusion.  Technically, he's still on the oral drugs until his appointment in April.  That will truly be the last day.  But the oral drugs are not nearly as hard on him as the one he gets injected with each month (called Vincristine) - so THIS is really the big day!

Next month, at his first check-up appointment, it will be the last day of the oral chemo drugs as well and he will officially "Ring The BELL!"  (There is a rather loud and very special bell at the HemOnc clinic that every patient gets to ring when they end their treatment.  As you might imagine, it's a VERY special day!)  But for Daniel, for the side effects, for his health, and most especially for his own stress level - tomorrow is the biggest milestone and the (virtual) end of a very long and difficult journey.

We are so very thankful to all of you who have come alongside us in any capacity along the way.  Some have been involved with projects around the house, transportation, meals, finances, and many other "hands-on" helps.  And while we are eternally grateful for all the things that everyone has done and continues to do for us, what we have been most grateful for is the innumerable prayers that you have sent up before the throne on our behalf. It's impossible to describe (though I've tried hard) what it's like to go through this with your child and your spouse.  But it's even more indescribable to convey the sense of comfort, security, even joy that just having someone say, "praying".  There have quite literally been thousands of such notes along the way in every format imaginable from person-2-person, to Facebook, this blog, CaringBridge, email, texts, and others.  We've been very "connected" through this process and I'm convinced it would have been a very different journey for us without that "connectedness" from all the different forms of media.  Andrea and I have said on many occasions that we don't understand those who hide their trials from their friends and even family, but we do understand that everyone deals with adversity differently.  We can only state that these forms of media have been an incredible blessing to us in many, many ways.  Those of you who helped us, prayed for us, or even just thought about us ... THANK YOU.  Those of you who let us know with even so simple a thing as a text or a comment as "praying" ... THANK YOU!

We're still trying to figure out exactly how to celebrate this event.  Daniel wants me to buy him a video game console in celebration.  Let's just say that won't be happening any time soon.

Grace and Peace to all,

- Tim -

A Long Overdue Update

Hi everyone.  This update on Daniel is horrendously overdue, I know.  But at least, in this case, no news is relatively good news.  Things have been largely uneventful for Daniel and his leukemia treatment (PTL!)

First, a HUGE thank you to everyone praying for Daniel, Andrea, and all of us.  You can't imagine how comforting it is to know that others are standing with us on his behalf through all that we've been through.

Daniel remains in the 5th / final stage of his chemotherapy called the "Maintenance" phase which consists of a monthly visit for IV chemo drugs and daily drugs in pill form at home.  If all goes as planned, we'll remain in this stage until spring of 2015.

In general, he's doing well and continuing to improve.  Life has largely gotten back to a sense of "normal", though we can never completely get away from the ever-present knowledge and effects of his cancer.  The things that continue to plague him are:

1. Effects of chemo drugs.  The primary culprit seems to be Vincristine which he gets IV once a month.  It is a particularly nasty drug and has potentially long-term or even permanent side effects.  He experiences pain in his muscles and joints, much like arthritis, which is particularly bad after his treatment each month.  Usually it goes away after a week or two, but seems to be lasting longer recently.  It comes and goes, but occasionally, all 3 of us are acting like we're all 70 years old.  It would be comical if it weren't for the reasons!

2. He still dreads his monthly hospital visits.  They have reduced the number of spinal tap procedures (for which he has to have a general anesthetic - which he HATES) to 1 in every 3 visits.  That's down from 2 in every 3, so that's been really good for him.  But even the ones where he only gets an IV are still traumatic for him - he gets himself all worked up about ANYTHING having to do with doctors, hospitals, or sickness.  I've been working with him on prayer and "taking every thought captive", etc. which has helped and is, I think, getting better.  But video games are still more effective. hahaha.

3. He still takes a handful of pills every evening (not including various vitamins & supplements) as part of his chemotherapy.  They often result in mild to moderate nausea as would be expected. 

4. His osteoporosis (which predated the leukemia) continues to improve.  The last bone density scan showed marked improvement and we continue to anticipate an eventual full recovery.  In the mean time, the fractures in his spine continue to result in fairly frequent backaches & headaches that I believe are the result of muscle tension from the misalignment.  I'm trying to get BOTH of us on an exercise schedule to improve his core strength and help make that alignment better again.  Heaven knows we both need it! haha.  Though his level of activity and strength are returning, he's still got quite a ways to go to get back to "normal" 11-12 year old activity levels and strength.  He's still largely sedentary which I think is partly from lack of energy (from all the above) and partly it's just become habit.  I very much believe that more exercise will improve a lot of this as well as to build self-confidence and help break him (and me!) out of the sedentary habits that have developed over the past few years.  Heading into winter makes this more challenging, but hopefully, we can keep each other motivated!

In general though, we are VERY pleased with his progress.  There have of course been no signs of the leukemia since we initially went into remission a surprising 2 weeks after starting chemo way back in Jan of 2012.  The unfortunate part of that is that there is currently no way to tell whether the cancer is truly gone or not at this point.  It is completely undetectable.  All of the chemo treatment that remains is being done in an attempt to assure that it doesn't return.  "Relapses" are horrible.  The treatment starts over again from the beginning and the cancer itself tends to be much harder to get into remission and more likely to come back.  The thought of a relapse is terrifying - and that's why we spend more than 3 years pumping him full of poisons to make absolutely, positively certain (as possible) that every trace of the cancer is gone.  Unfortunately, since nobody knows what causes it in the first place, it's a complete guessing game as to why, how, when it might come back - or not.

One really good piece of news from the past few months is that he seems to have returned to a normal growth & weight gain curve.  He's once again outgrowing his clothes for which we are abundantly happy!  There are two unfortunate parts about this (other than the normal clothing expenses of course!).  First, the additional weight has bumped him into a higher category for the chemo drugs.  Believe me, the LAST thing I want to see is increasing doses of the chemo/poisons being dumped into his body.  Obviously, we believe it's for the best (or I wouldn't be continuing the course), but that makes it no less difficult to watch it happen - especially when you know he just barely qualifies for the higher doses and already suffers side-effects from the lower doses.



The second aspect of the weight-gain is that it's not all "good" gain.  The fact is, he's becoming slightly overweight!  I haven't computed a BMI yet, but you can definitely see in his face, chin, chest, and waist that much of his weight is not healthy.  This, in a sense, puts him over the weight category line artificially, and adds its own stresses to his system at the same time.  So it underscores the need for exercise, better diet, and less being sedentary in general (for ALL of us!)  Let's hope / pray for a relatively mild winter that will allow more outdoor activities!

Andrea remains about the same.  One really good piece of news recently was that the doctor finally agreed to try reducing her daily dosage of the chemo drug.  As a reminder, Andrea was diagnosed with a slightly different form of Leukemia (C.M.L. as opposed to Daniel's A.L.L.).  Her's, while not cureable without a full (and hugely risky) bone marrow transplant, is treatable with a drug - a single pill, once a day.  And while that in itself is truly miraculous, it is still chemotherapy and comes with all the same (plus some additional) side-effects.  For her, the most troublesome are the horrible lack of energy and the constant muscle and joint pain.  She feels like she's just run a marathon 24/7 and just getting up enough motivation to get out of bed is a major challenge every single day.  So the news that we could reduce the dosage by 25% was a huge blessing.  The jury remains "out" as to whether there's been a noticeable, lasting reduction in side-effects, but there seems to be a least some reduction.  And we'll take anything we can get!

There was a brief discussion about reducing it to 1/2 dose, but the doctor is reluctant to do that - at least not yet.  She even brought up the idea of trying to go off it completely (recall the above details about relapses).  He's very resistant to that idea, but the statistics he quoted really surprised me.  He said that about 40% of people that go off it completely have it return.  That's actually MUCH smaller than I anticipated (I figured it'd be more like 90-95%).  So that's something we remain in prayer about seeking wisdom & direction.

Thanks again everyone for your thoughts & prayers.

- Tim -

Update on Andrea's Neck Pain

As many of you know from following us on Facebook yesterday, we had a little crisis with Andrea having really severe neck pain.  She had mentioned to me a day earlier that it was really stiff and she thought she'd "slept on it wrong", but apparently it was something that had been building for awhile unbeknownst to me.

Yesterday, it launched to crisis level when she woke up screaming in pain (literally, she tells me, though I was already gone to work).  She said she was glad Daniel had been staying at a cousin's house because she was screaming and crying all morning trying to get dressed, feed the dogs, and get a hold of me.  I'd already been at work a few hours by the time she let me know what was going on.  I left immediately and got home to her, applied heat, did some light massage to the neck and shoulders, and called her oncologist to get permission to give her some prescription pain reliever we had for Daniel.

Within an hour things were a bit better and we discussed options eventually settling on the ER at Hancock Regional (Greenfield) hospital - mostly because they're so much less crowded. Sure enough, there was no wait at all.

As a friend of mine predicted though, the ER did nothing but treat the symptoms and refer us back to our family doctor (which is another story, perhaps for another time).  As they treated her and discussed what they wanted to do, I was repeatedly reminding them about Andrea's chemotherapy medications and how she's extremely limited on what other meds she can take because of interactions with it.  Both the doctor and primary nurse were visibly annoyed with me (which is normal by the way), but at least twice, I saw them change what they were doing or planning because they'd forgotten to take that into account even though I'd already told them.  Very frustrating, but again - quite normal.  This is exactly why I annoy the heck out of them constantly bird-dogging them and insisting they tell me everything they're doing.

After giving her an injection of an anti-inflammatory drug, the doctor prescribed two high-strength pain relievers and a muscle relaxer - again - after my repeated warnings that they needed to closely evaluate interactions with her chemotherapy meds.  So as soon as I got Andrea back home, I called the oncologist to run these drugs by them and as I expected, 2 of the 3 prescriptions were rejected.  We ended up settling on a different set of meds which we hope will help a lot today - we'll see when she gets up and moving this morning.

I was able to get 6-1/2hrs in at work after all, but didn't get home till nearly 9:30. By then Andrea was doing pretty well though.  Unfortunately, we're kind of "between" family doctors right now, so we'll need to decide who to see about getting to a root cause with this.  For those who asked about a chiropractor, we almost certainly will not be going that route.  After a couple dozen years of combined experience between Andrea & I and a fair amount of my own research, I put very little faith in chiropractors any more.  Notice I did not say "no faith".  I'm convinced there's still a "baby" in all that "bath water" - and I remain open ... a little ... but the next time I hear the word "subluxation" or am told we'll need a full set of X-rays, I may actually scream! :-)

I know I owe everyone a major update on both Andrea and especially Daniel regarding the cancer and our recent trip to Orlando.  I promise, I'll get them out soon.

As always, we're extremely thankful to everyone for the prayers - by far the BEST treatment for any illness!

Grace and Peace to all;

- Tim -

An Update From The Millers

Hi All;

It's been way too long since I've written anything here and folks have been asking how things are going.  Well, things are going - sometimes it seems way too fast.  Weeks and months roll by and at some point I sit up and wonder where it all went.  Some of it, I'm sure is just a by-product of my new senior citizen status. There are in fact way too many of those by-products in my life right now, but I'll not go any farther down that road.

ANDREA:
Andrea has been reasonably well.  Things are largely holding steady.  She continues to struggle with lack of energy and "gut problems" of all types. I'll spare both her and you any further details.  Her oncologist continues to blame the chemo therapy drug she takes daily.  However, we know that many of these problems preceded the cancer treatments and it's been extremely difficult to sort out what's what and what we might be able to "fix" vs. what we just need to learn to live with.  So we continue to try various things through our family doctor and on our own to improve what we can.  She's doing her best (and succeeding) to keep up with most of the housework and Daniel's school.  Her family is going through some real challenges right now and that's been stressful on all of us, but especially her.  It's been a difficult situation for many years, but it appears things are rapidly building to crisis level and we're trying hard to figure out the wisest form of involvement for us to have.

Lately, she's been busily trying to plan Daniel's trip through the Children's Wish Foundation (we recently found out it was NOT the Make-A-Wish Foundation, but apparently the exact same kind of thing.  Regardless, They provided Daniel with one "little wish" and one "big wish".  The little one was a (rather large)   Lego set early last year.  And for the big one, Daniel has chosen a trip to Disney World - which is, not surprisingly, a popular choice.  As he's getting much of his strength back now, we thought it would be a good time to try to get him down there.  So Andrea's trying to coordinate all the permissions and paper work and timing, etc.  It'll be fun to see how this all comes together.  But the stories we've heard form others who have done this are just phenomenal.  I think Andrea's more excited than Daniel! :-)  If all goes as planned, we'll be going in early May.

DANIEL:
Daniel is also doing well.  His hair is coming back in really full now and he's quite happy about that.  He's NOT been very happy about the fact that it's come in very curly.  Formerly, his hair was bright blond and very straight. Now it's a fairly dark brown and curly.  Despite a couple of dozen people assuring him that this is going to be a big hit with the girls one day soon, he remains skeptical.  We've also been glad to see him beginning to grow again in both height and weight.  He's behind the curves a bit, but moving the right direction and that's a HUGE relief to me.  I remain frustrated that we've never gotten any traction from the medical community as to why he was completely stunted in both height and weight gain for two to three years, but at this point, it appear we never will.  Unfortunately, much of his weight gain has been the result of gaining disproportionate pounds - probably as a result of ongoing steroid treatments.  Though both the dosage and frequency are greatly reduced in the current Maintenance phase, he's once again putting on quite a bit of weight.  Some of it is likely from simply being house-bound in the dead of winter.  I've been extremely cautious about letting either one of them out with as bad as the cold and flu season has been this year.  For awhile, it seemed EVERYONE was sick and I was terrified to let either of them out of the house. But by the grace of God, we've made it through largely unscathed to date ... well until today, but I'll come back to that.  Daniel has been slowly increasing his involvement again in both his weekly home school co-op and the church's AWANA program.  He's doing very well in (home) school and excels at Math.  Last weekend, we attended the Heroes Foundation Gala / fund raiser downtown where Daniel was invited to be a V.I.P. representative of Team Joey - a program that raises support for both cancer research and cancer patients.  The Team Joey component was created in honor of Joey Keller's legacy, our friend who lost his battle with brain cancer last November.  Daniel took the stage with Colts coach Chuck Pagano (who's fighting leukemia himself), radio personality and former pro football player Joe Staysniak, and Heroes Foundation founder Vince Todd during the evening and thoroughly enjoyed himself.  It was his first formal event and we had to get him a suit for the occasion.  He loved dressing up and proved himself a natural "schmoozer".  I was in awe!!  There must have been a dozen different women fawning over him afterward and telling him how special (and cute) he was.  As a V.I.P. he'll be delivering toys (mostly Legos) to other cancer patients on behalf of the foundation.

His chemotherapy is still a daily routine with a few different drugs he takes daily (along with various vitamins & supplements), but the clinic visits are down to once-a-month and will remain so until we're finished in the spring of 2015, God willing.  It's a 3-month repeating schedule where 2 of the 3 months include a spinal tap & injection at the clinic visit.  He hates those with a passion ... and so do his mother & I.  But this is the course we've chosen to follow and, right or wrong, it's the one I believe best.  I remain open and often searching for any word from the Lord that would release us from continuing down this road, but until it comes, we will stay the course we're on.  Yet it doesn't stop the almost daily heart-ache at having to put my son through all we've done and all that lies ahead.  We rely regularly on Romans 8:28!

ME:
For myself, things have remained busy.  VERY busy.  I'm down to the last couple of weeks in teaching my Systematic Theology class with Water-To-Wine.  It's been enjoyable, but actually much more work than I anticipated.  Things at work have continued at a fairly steady pace and the job itself remains enjoyable overall.  I'm extremely happy to be in a job at all, especially one with good health insurance.  The fact that it's also largely enjoyable has been a huge blessing.  Not having to deal with past stresses and simply dreading going into work every day in the midst of all we've gone through in the last couple years has been of immeasurable value.  I thank God regularly for that!

In the past couple weeks, we've finalized plans to start up another weekly Bible study that I'll be teaching at our friends the Rikker's house.  We did this for several years awhile back and it was a fantastic blessing.  We still count those folks among our closest friends and we're very much looking forward to getting most of the old group together again as well as some new faces.  I'll be teaching Genesis (which is actually where we left off when the group ended several years ago) which is always a favorite for me.  So despite the fact of having two studies going for a brief overlap coupled with a busy work schedule, trying to keep up with the house and some remodeling projects, and several family problems right now, the next few weeks are looking a bit challenging!

Right on cue, as we finalized plans for the new study over the weekend, I came down with what appears to be laryngitis.  It's like clockwork.  It was the same month in which I agreed to teach with Water-To-Wine that Daniel was diagnosed with Leukemia last year.  I was teaching Genesis as my first course in fact.  Before that, it was while teaching this same group at the Rikkers' house that I had an eye infection that had me out of work for the better part of 4 months and ended up with corneal replacement surgery.  When I got through that and eventually started teaching Genesis, the group disbanded.  It's always something - especially when teaching Genesis. The warfare that comes with any form of ministry is intense.  Teaching the Bible is obviously something our enemy hates vehemently ... and Genesis in particular for lots good of reasons!  I believe it was Martin Luther who said something to the effect that, "anyone who doesn't believe the devil exists need only try resisting him!"  Amen to that!

PRAYER REQUESTS:
1. So we could ALL use your continued prayers.  The road ahead remains challenging in lots of ways, but we're also very relieved that it seems the worst is behind us (famous last words, I know).

2. I would like to specifically ask for your prayers for myself in the next few weeks as I try to juggle a lot of plates and keep healthy.  Please pray for this throat infection in particular.

3. We could also use your prayers for several family members also going through some real difficulties right now - as well as wisdom on our part in how best to help them.

4. Lastly, I'd like to pass on a special prayer request for another family that a friend recently brought to my attention.  They are a Christian family who immigrated to Indiana from Iraq last year because of the intense persecution of Christians there.  Their son Lowees (Luis), who is 12, has been diagnosed with an aggressive form of lymphatic cancer (Burkitt's Lymphoma) and is undergoing chemotherapy at Riley.  Having been in the states for only a very short time, they don't have a lot of connections yet much less having to adapt to a new culture.  Learning to navigate the medical system is challenging enough.  While learning a new language, culture, living situation, and all the rest at the same time is just unimaginable.  I was also informed that Lowees' father recently lost his job here and is struggling with depression.  They certainly need our prayers.  I'll pass on more info as it comes.

Thanks everyone for your ongoing love, support, and prayers.  You have been God's hands, feet, and voice to us more times than I can possibly count or even acknowledge.  And above all, we thank our Lord and Savior Jesus Christ Who's love, faithfulness, peace and comfort through these times has sustained us in every way.  To Him be the glory in all things.

Grace and peace,

- Tim, Andrea, & Daniel -

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 -

Final Hospital Admission?

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

As I write this, Andrea and Daniel are heading out the driveway on the way back to the hospital.  If his blood counts are good enough, he'll be admitted for his fourth & last PLANNED hospital admission and the end of this phase of chemotherapy ("Interim Maintenance").  I'll join them a bit later today after getting some things done around the house, and will be spending most of the weekend and the next couple nights in the room with Daniel.

As with the previous admissions, he'll get a rather large dose of a drug called Methotrexate through an IV over the next 24hrs.  We then take blood samples every 6 to 12 hrs to see how it's clearing.  Once it's below a certain point, he's allowed to go home.  But due to the nasty nature of the drug and the potential of his body not clearing it (kidneys shutting down, etc.) they have to watch him constantly while its in his system.  If all goes well, we should be back home Monday or Tues.

Daniel was pretty upset about today's admission last night and was even in tears at one point.  Despite the fact that there's no spinal tap procedure this time around, he HATES anything to do with the hospital or doctors anymore. Who can blame him?  I read Daniel 3 to him and prayed with him and he fell fast asleep.  This morning he seemed in good spirits, but that can change in an instant if he lets himself start thinking too much about it.

When I questioned him about it last night, he said he was worried about the NEXT phase.  Frankly, that one worries me too.  We get a week off in between, but the name of it is "Delayed Intensification" if that tells you anything.  The nurses have said (in front of him) that even though his hair has been coming back in well, this is the phase that often will knock it completely out. That's a big deal for him and we're praying that it doesn't happen.  It'll be another 2 months of weekly outpatient clinic visits with LOTS of drugs being pumped into him.  Then, finally, we'll get to the "Maintenance" phase that will continue for another 3 years with monthly visits, lots more spinals (28 of them I count), more steroids, and just more stuff than any of us wants to think about. 

If all goes according to schedule, today is day T-1039 (counting down). It was pretty depressing this past week when I put together a day-by-day schedule for the rest of his treatment plan.  Seeing how many more times he'll be given each type of drug (28 spinal injections, 180 more days of steroids, 1000 days of Mercaptopurine, etc.) - wow. 

As much as we'd like to think it's all smooth sailing after we get through this next intense phase, well, it's not.  It's gonna be 3 more years of cancer, chemo hell for Daniel. "Normal" will change a bit from what it is now, but not that much.  What will however remain the same is our Rock, our Comforter, our Ever Present Help in Trouble, our Fourth Man in the fiery furnace. 

Other than the obvious, my SECOND most important on-going prayer is that this opportunity will not be wasted.  It's SO EASY to want to forget about everything, to just kind of go into denial on the good days and forget about it all.  And there's nothing wrong with that. In many ways, it's necessary and healthy.  Unfortunately, it's also all too easy to lump God in with that process.  In so many ways, God and prayer, and leaning on Him has become almost synonymous with cancer and hosptials and chemotherapy through these past 7 months.  We've spent so much time in prayer and petition to God as part of the cancer trial, that on the good days, it's far too easy to want to forget about HIM for awhile too.  It's awful, it's wrong, it's stupid, but we're fighting against our own mind-games and defense mechanisms here.

What I really, REALLY want is for all of us, but especially Daniel, to draw close to our Father - to learn to see Him as a Best Friend; Someone to draw close to in both the hard and the joyful times - to see the MANY sides of His personality and love and character through the truly amazing variety of experiences that have already and continue to come our way during these 3 years.  But it's largely up to me to model that, to help Daniel process all that happens, to help him make this a learning and growing experience. Despite the horrible nature of these events, I'm also convinced it can be, and is INTENDED to be, an amazing and powerful classroom of opportunity for all 3 of us.  Heavenly Father, PLEASE don't let me waste this opportunity!

Thank you, everyone, for your continued prayers, support, and kind messages.  Please know for certain that we read and appreciate every single one and they have a powerful effect on us all.

Grace and peace.

A 3rd Try for Treatment Tomorrow

We're preparing tonight for the 3rd attempt at getting Daniel into the hospital for his next round of chemotherapy tomorrow morning.  This phase is dependent on his white blood cell counts being above a certain level before they'll give him the treatment. The past 2 times, they haven't been high enough (in fact last time was the lowest they'd been in awhile).  He's been very active lately and being around a lot more people that I'm comfortable with (any exposure to germs can drop his counts further as he's much more susceptible to infections now) - but that's also really been good for his morale and getting some badly-needed exercise and sunshine.  So it's a mixed bag and I've been a lot more "lenient" on letting him do things because I know the psychological side (as well as the exercise itself) may well outweigh the risk of keeping him protected.  But as you might imagine, with what's at stake here, I tend to be a little over-protective of our "only begotten son"!

Tomorrow, we'll find out whether I've been too lenient.  It's rather ironic that "good news" in this case will result in admission to the hospital, a spinal tap, and a 24-hr dose of extremely toxic drugs into him that warrant 24hr surveillance until they're completely eliminated from his body.  But at this point, we just want to get through this - and even more so - the next phase.  The next one is actually the one that worries me the most.  It's referred to as "delayed intensification" and as the name implies, it's another very intensive 2-months of chemo.  His hair has been starting to come back in, his energy is up, he's slowly rebuilding some strength and stamina, but that phase is very likely to knock him back down several rungs again.  He's been unusually lucky (ahem) thus far to have not lost all his hair.  I believe it's a direct answer to prayer ... one of those "little things" that God has been pleased to grant him through this trial.  That was a big deal for him, and he's been really happy to have not had to shave it completely.  But we're warned that the next phase may break our "streak" and result in him losing what he has left.  We'll see ... and continue to pray for that little blessing to continue.

Through it all, God has been wonderful to us.  We've had every need met, been surrounded by the best doctors, friends, and family, and been learning a lot about trusting God with the big things as well as the small things.  Yet despite how well things appear to be going right now, it's never far from out minds how quickly it could all turn south.  Through this experience, we've been surrounded by so many, MANY others who are traveling similar roads.  Many we've met cause us to realize just how blessed and how "easy" our road has been thus far.  I've learned a LOT about strength, sacrifice, endurance, the need and power of prayer, and the value of Christian community.  Most of what I've learned is how far short I fall in these areas compared to the amazing people that God has brought into our lives.  It is my fervent prayer that all of us will forever be changed by these lessons and that they will ever be as fresh as they are now.

Those who have come alongside us during this time - helping with projects at the house, preparing meals, helping Andrea with cleaning, shopping, helping us financially with house renovations and medical bills, watching Daniel, even staying with him over night at the hospital so that Andrea and I could get some much needed rest - the generosity and self-sacrifice of so many around has been staggering ... unimaginable.  We will NEVER be able to fully express our appreciation to those who have helped in these and so many other ways.  And as I've said so many times before, with total honesty, the help that I covet the most from people is not with finances, or swinging hammers, or watching Daniel (though again, we're incredibly grateful for all these), but rather with prayer.  I can tell you with absolute certainty that, during those sudden trips to the emergency room at 2am, or bad news from the doctors hitting us like a freight train, there's no amount of money that can hold a candle to 20 or 30 people commenting on a Facebook post that they are praying and have their family or churches praying for us too.  We can feel those prayers like a warm blanket around us as the Holy Spirit draws us close and reminds us that He is in control and that those prayers go up before Him like a "sweet aroma" petitioning for the life and health of our son and our family.

Thank you.  Deep, heart-felt, eternal, and profound thanks to each one of you who have been a part of our journey through some sacrifice of your own - even just a minute or two in prayer.  Thank you, and may our Lord multiply your generosity back to you many-fold and many times.

For those who ask for our prayer requests they are few and simple right now:
1) That IF it be the Lord's will and timing tomorrow, that Daniel's blood counts will allow us to move forward with his treatment in the morning,
2) That it will go well - no mistakes, no adverse reactions or side effects, etc.,
3) That the drug will do it's job and be eliminated from his body quickly so we can all go back home, ultimately, moving always toward complete healing and health,
4) That we will be a witness for our loving Father and continue to grow and learn through all this - especially Daniel, and as always,
5) That God would be glorified in all this.

Grace and peace to you all,

- Tim -

Delayed Again. :(

Just a quick update to say that Daniel's blood counts were again too low to admit him for the scheduled chemotherapy this weekend.  So they're heading home.  Very frustrating.  He's quite happy, but obviously we're not avoiding anything. We'll still have to go through it all, just dragging it out farther into the Fall & Winter with each delay.

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 -

Weekends at the Hospital

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

Weekends at the Hospital:

As I write this, Andrea and Daniel are off to the hospital again this morning for our next planned admission - the second of four for this phase of chemotherapy.  Though we're very grateful that the staff has agreed to shift these admissions to the weekend so that it's not so hard on us to stay the nights with Daniel, it doesn't make for a very enjoyable weekend for anyone.  Daniel was really dreading this again last night, but the good news is that there is no spinal tap this visit.  Finding that out made him a little happier.

I was rather surprised last night as I got out my copy of the chemotherapy protocol to which he's been assigned to see what was on the agenda for this weekend.  He actually got angry with me stating that he didn't want to see it, didn't want to be around it, and didn't think ANYBODY should have to "see their own chart".  I was dumbfounded.  It's such an opposite reaction to things like this than I had at his age when I underwent kidney surgery and had to go into the doctor twice a week for allergy shots in each arm growing up with fairly severe allergic asthma.  I wanted to learn about everything.  I had a collection of the hypodermic syringes (with needles broken off of course) - hundreds of them.  I even did a science fair project on how the kidney works.

But Daniel wants nothing to do with ANY of it and doesn't even want to have the subject discussed in his presence.  When we're not actually forced to be dealing with the subject, he wants it all as far from him as possible.  Clearly there's a LOT of psychological undertones here and most of this is a defense mechanism.  Some of it at least is unhealthy and I still look for opportunities to help him process through all that's happening.  I want to be sure he at least doesn't have false ideas or expectations about how things are going or his prognosis.  Worries and fears will kill us and we're not meant to carry such burdens even as adults.  Watching a 10 year old go through this - particularly one's own and only child - is soul wrenching.  On the positive side, he's been doing much better recently.  We've been looking for and finding more "fun" things to do and, with his counts improved, we've been able to have more visitors and get out more.  Last weekend, I took him to play LASER Tag - probably his new favorite activity - and that was a huge attitude boost for him.  He's been feeling & acting much more "back to normal" though he still doesn't get out of the house much.  This isn't so much because we won't let him as just the combination of schedules, weather, and limits to his own energy levels (not to mention Andrea's & mine).

I'm back at work today as I've been so much of the time this week, and last, and the one before that...  My team is up against some difficult deadlines and a LOT of people are stressed and putting in lots of hours.  I'm starting the day today with several hours of overtime already on my time card.  So in some ways, I'm actually looking forward to the hospital stays this weekend as I spend the evenings at least with Daniel.  It'll be the most I've seen of him all week.  I'm thankful that at least I'm enjoying the job.  That's an enormous blessing that I'm very thankful for in the midst of all this. 

PRAYER REQUESTS:
1. Please continue to pray for Daniel - he needs God's touch, reassurance, and comfort in his whole being - physical, mental, and spiritual. 
2. More & better family time for all of us, but especially Daniel, to bring more "FUN" into the equation to balance out the rest.
3. Better spiritual (and psychological & physical) leadership on my part so that I can help him process, recover, and build himself up in body, soul, & spirit
4. Along the same lines - that Daniel (and all of us) would be STRENGTHENED through these trials ... that they would accomplish God's purposes in our lives, working together for good both in us & through us to others.
5. Success and minimal (or NO) side-effects from the drugs or complications from all this
6. For Andrea and I as we struggle, seemingly more and more recently, with the stress, communication, and our own marriage through the midst of all this.
7. That God would be glorified in the midst of our family and by what others see / perceive in all this.  If God can use this as a witness or to help others in any way that brings glory to Himself, then all of it is worthwhile.

PS: Please also continue to pray for our friends the Kellers and their boy Joey.  Visit / join his CaringBridge site here; http://www.caringbridge.org/visit/joeykeller

News Flash: God Answers Prayer!

News Flash: God Answers Prayer!   (Reposted from CaringBridge.com

Within a half an hour of the request going out for prayer last night, Daniel's rapidly rising temperature plateaued and started back down.  By midnight it was down under 100 and this morning it was back to normal (probably much earlier, but this was the first we heard).  Thank you all for your prayers last night (and all along). 

I was marveling marveling last night at how the technology of modern "social networking" such as this site, Facebook and others, have made it possible, not just to send out prayer requests, but to get nearly immediate feedback from people around the world that are lifting up our requests for Daniel.  How wonderful for the 3 of us, late on a Sunday night, sitting in a hospital room trying not to worry about a rising temperature and starting to think through the logistics of an even longer hospital stay - to get replies from no less than 8 people in the first 15 minutes or so that they were standing with us in prayer over the situation.  Unless you've experienced that , you might not appreciate just how much that means or how much we've come to depend on those little "likes", comments, Guest Book Entries, text and email messages, etc.  Each one is a comfort and encouragement to us in those darker times when we find ourselves reaching out to the Lord and the Body again ... and again, and again.  Thank you all.

At the same time though, it's important for us, to keep the focus in the right place.  I found myself initially titling this entry as "Prayer Works" - but a little flag rose up in the back of my mind about an old pet peeve of mine - that people attribute power directly to prayer itself.  Prayer has no power of it's own.  Prayer doesn't "work" or accomplish anything.  It drives me nuts to hear of "scientific studies" regarding the efficacy of prayer, etc.  Prayer isn't (or at least shouldn't be thought of as) anything more than a name given to a conversation with God.  If I were phoning the fire department to come put out a fire at my house, I wouldn't be extolling the "power of telephones" to put out the fire would I?  I wouldn't think of performing a scientific experiment to see how many fires were put out for people who used their telephones (regardless of who they called) versus those who didn't.  The focus is that you used a telephone - it's WHO YOU CALLED - whether it's a 911 call or prayer to the Creator of the Universe! 

People write books and have arguments about how to "pray effectively" and such, but as far as I'm concerned, that's all nonsense.  Have you ever listened to recordings of 911 calls?  It's sometimes amazing that the dispatcher can understand any of it - people are yelling and crying and babbling ... just trying to get HELP.  Yet there are no books (to my knowledge) written about how to make effective 911 calls.  The point letting the person on the other end know you need HELP!  Thankfully, we have Someone on the other end of the prayer hotline Who already knows what we need and is eager to grant us what we come to Him for when we come to Him through Jesus Christ. 

So with enormous gratitude to all our family, friends, and other prayer partners for Daniel for praying alongside us and "letting our requests be made known", I want to be sure to keep the primary focus on the One who ANSWERS those prayers for us and brings us safely through all the "Floods", "Fiery Furnaces", and trials that come our way. 

Thank You Lord Jesus!!!  Thank you for answering every prayer we've ever sent you - regardless of what that answer was, it was exactly what we needed and when we needed it.  Thank You.

- Tim -

A Potential Setback

We've had a bit of a setback tonight after having done so well today; Daniel is running a fever now with a headache.  Over the past hour, it's risen from about 99 to 100.8.  Not sure what this is about, but if there's a possibility of infection, we won't be going home tomorrow (which everything was the way things were looking until this evening.)  He's resting now having stopped "Cowboys and Aliens" half-way through (so you know he's not feeling well!)  Very frustrating.

If it rises above 101.3, they will automatically culture his blood and start antibiotics - which means we'll be here for a minimum of another 48hrs even if the fever goes away (to be sure nothing shows up on the blood cultures).

We may have gotten over-confident since his blood counts were so high on Friday (well into the "normal range" and they said this particular chemo drug shouldn't negatively affect them).  So we've been more liberal with visitors this visit.  But of course there's no way to know what, or even IF he's gotten anything at this point.  There are few better places to pick up an infection than a hospital anyway, 

Please pray with us that any infection (or possible drug reaction) would quickly die without the need for more antibiotics or any longer than needed stay in the hospital.  Please pray for Andrea and I as well if we need to make further arrangements for being here at the hospital longer than anticipated through this week.  The next few weeks are going to be particularly stressful for me at work as it is without additional  complications with unplanned hospital stays.

On a positive note, our friends the Kellers were discharged today as Joey was much improved from the horrible past few days he spent here in quarantine with a CDiff infection.  We saw very little of them, but are really happy they got through this. It was a very close call with something completely out of the blue - a complication of all the recent antibiotics.  They still are in need of a touch from God for the cancer though so please keep them in your prayers as well.

As always, we look to the Lord for guidance, strength, endurance, wisdom, and peace through all things and trust that He is in complete control and will most certainly turn all things toward good and for His glory.

- Tim -

Starting Phase Three

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

After more than 2 weeks of delays, Daniel's blood counts were high enough today to start the next round of chemo treatments; in fact, they were the highest they've been for some time.  That was certainly good news.  It needed to be above 750 (which it hasn't been for a couple weeks), and today it was 2700, the highest it's been in a month and a half.  So we were really happy to begin this new phase on such a positive note.

The day began with a spinal tap and a dose of Methotrexate into his spinal fluid as we've done so many times before. It went off reasonably well though the anesthesiologist had difficulty getting him fully out and there were a couple of painful false-starts before he was completely out.  Dad dislikes this VERY much and has pretty short patience when hospital staff treats his son like anything other than royalty or gets in a hurry.  But such is life.  After it was all over, Daniel didn't remember a thing and I didn't tell him.

As soon as he was "recovered" they brought us back up to the 5th flood (Hematology / Oncology, or "HemOnc" for short) - our home away from home these past 4 months.  I left to go back home and get some chores done while Andrea stayed.  About 6 they began what we came for - what they refer to as "High Dose Methotrexate".  He's received this drug a number of times in the past, but only into the spinal fluid and in much lower doses.  Like several other chemo drugs, it prevents the DNA synthesis of fast-growing cells such as those found in hair follicles, the lining of the gastrointestinal system and urinary tract, and of course, the cancer cells themselves.  Normally, the drug is administered into the body and then the kidneys filter it out.  Unfortunately, in kids, the rate at which the kidneys filter out the drug can vary considerably or even decide not to work at all.  Because of this, they need to watch him very carefully after the drug is administered and take regular measurements of how much of the drug is left in his bloodstream.  This is how they determine how fast his kidneys are filtering out the drug.  If things are going too slow, they do have another drug they can give him which causes the kidneys to quickly rid it from the body, but this is only used as a last resort.

Being a powerful and toxic chemical though, there are always dangerous potential side effects.  The usual are things like headaches and nausea (which Daniel has had a fair amount of today). But there are worse possibilities - some MUCH worse.

Of course we hope for the best, in which case the drug should be completely gone from his system in a matter of 3-4 days and we'll be released.  But as always, we request constant prayer cover that everything will go smoothly and with a minimum of side-effects.

We also that Daniel (and whoever is here with him) will be able to rest comfortably.  Unlike our first visit which spoiled us in a private room, our last two admissions have been in double-rooms with roomates (or their parents) who snore rather loudly.  In fact, I'm listening to that very thing as I type this.  Luckily, I brought ear plugs this time, but I don't like wearing them because I won't hear Daniel during the night.

We also request and urge each of you to pray fervently and regularly for our friends the Kellers and their son Joey who are here in the HemOnc ward with us.  Joey is facing an enormous battle with brain & spinal cancer and has recently suffered a number of setbacks.  He is here in a quarantine room as they believe he may have an infection on top of the cancer relapse.  He is in desperate need of a touch from our Father's hand and we pray for exactly that.


Visit Joey and the Kellers here: http://www.caringbridge.org/visit/joeykeller

Grace and peace to you all,

- Tim -

Another Week of Waiting

Another Week of Waiting  

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

After all the planning, preparations, arrangements, packing, and "psyching up" - we arrived at Riley this morning prepared to start chemo phase 3 and our planned admission to the hospital, but at the very last moment, the blood test results came back telling us that Daniel's white cell count was too low.  It has to be a minimum of 750 to begin (1400 is the bottom of the normal range), but he was still only 620 today.  So everything was called off, and the fighters were sent back to their corners for another week of waiting. 

While we do appreciate and will enjoy an extra of "vacation" from the chemo regimen, keep in mind that this was already delayed a week and a half when they found bacteria growing in one of his blood cultures earlier this month resulting in a 3 day admission and a week of high-powered antibiotics.  With this new delay, our first admission will be on the date that we should have been 1/4th of the way through.

So true-to-form, chemotherapy proves to be a one-day-at-a-time (or at least a week-at-a-time) proposition. Any plans are only made in pencil and better to just not be made at all.  The hardest thing for me is trying to keep a reasonable schedule at work.  But so far, things have worked out OK. It's been a struggle to keep up, we're managing and my boss and coworkers have been extremely gracious.

The most bothersome thing about today though, to me anyway, is actually that his counts are still so low.  I'd expected them to be pretty good after the last week off.  Need to talk to the doctors about that, but I expect the answers won't be very satisfying.

Perhaps the best part of our day though was getting to visit for awhile with the Kellers who have been there most of the week having started Joey's new round of chemo.  Joey and Daniel had a blast playing their Nintendo DS games together (Daniel received his as a gift from Riley when he was first diagnosed) while Elizabeth and Andrea, and Nick and I got to catch up.  It was probably the longest Nick and I had every gotten to talk together and I really enjoyed it.  Please continue to keep them in your prayers as well.

Since I'd already gotten my work-week completed, we took the rest of the day to go visit the Indiana Historical Society downtown, not far from Riley.  We'd never been there, and I'd purchased some tickets last year that were going to expire at the end of this month.  Daniel was actually in tears at the thought of mean-old-dad forcing him to spend his day at a "history museum", but when he still didn't want to leave the very first exhibit after spending 45 minutes there, it proved to be a fun day for all.  By closing time (5:00), I REALLY didn't want to try to fight the traffic coming out of downtown Indy to get home, so we opted for a brief trip to Circle Center Mall, and some dinner.  We arrived back home a bit after 9p and Daniel is in great spirits.  However, he tires very easily nowadays and often pays for even as little exertion as walking around the museum like this with a couple days of sore muscles and low energy.  That's just how out-of-shape he is after having spent the past 2 years with very little activity, and the last few months almost completely sedentary or even bedridden.  I struggle with trying to find the balance of pushing him just a little to get some exercise in, and not wanting to compromise an already very weak immune system with rebuilding sore muscles.  As it happens, I haven't had to push him at all lately as he's been feeling more energetic.  If anything, I spend my time reigning him in and slowing his pace to keep him from paying too heavy a price.  In all it's going well ... except for the continuing low blood counts anyway.




But as always - we trust that God is in control, all things happen for a reason, and ultimately, He will work all things into a pattern for good and to His glory (Rom 8:28).  Peace comes when we are content to trust Him with all things.

More news as it comes - same bat-channel.  Thanks again to all who have continued to keep us in your thoughts & prayers.

Prayer Requests:
1) As always - complete healing from the cancer
2) Strong blood count numbers (specifically red & white cells)
3) That he remains free from infections and generally healthy during these times of lowered immunity
4) When the next round of chemo does start, that his body will eliminate the drug quickly and completely (more on this later)
5) Minimal side-effects, no reactions, etc. to the drugs
6) That Andrea and I will continue to be able to keep schedules working, our own health, finances, etc. so that NOTHING gets in the way of proceeding on course
7) That God would be glorified, lives will be strengthened (especially Daniel's, but others through his witness as well), and the knowledge of our Great Physician, His love, and His plan of hope would be made known a little wider and a little clearer through all of this.

And last - but foremost - please PLEASE keep Joey Keller and his parents in your prayers (http://www.caringbridge.org/visit/joeykeller)

- Tim -

The Start of Phase 3

The Start of Phase 3

(Mirrored on CaringBridge at http://www.caringbridge.org/visit/danieljmiller/journal)

 Though the circumstances of last week's hospital visits were far from desirable, it has at least afforded us an extra week's break before the start of our third phase of chemo.  It's been great for Daniel and he's show a lot more energy and better attitude than we've seen in a long time.  It's been an enormous blessing to all 3 of us.

This third phase, called "Interim Maintenance 1" consists of 4 hospital stays (3-4 days each) over the next two months where Daniel will get extra high doses of the drugs Vincristine and Methotrexate.  You may have heard of that 2nd one in the news recently as it's been one of the chemo drugs that are currently in very short supply from generic pharma companies that can't make any money from it.  So far, Riley tells us they haven't had significant trouble in getting what they need.  (hint: 1st Prayer Request).

Because of the extra high doses of this already nasty drug, they need to have Daniel under close watch for a few days after giving it to him. (2nd Prayer Request).  Because Daniel is still terrified of having to stay in the hospital alone for any length of time, we'll have to be there with him the whole stay.  Andrea and I are getting pretty good at tag-teaming it, and we've been VERY grateful for some help from other friends in this regard along the way also.  THANKFULLY, the hospital was willing to reschedule these stays to be over weekends for us so I don't have to miss any more work (or try to continue working after staying at the hospital all night-NOT fun!) 

This first stay, beginning tomorrow (Fri) morning, will also include a spinal tap & injection of MORE Methotrexate into his spinal fluid.  I truly hate everything about the idea of what we're doing to him ... except for the part about killing the cancer.  I'm reminded of the scene in "The Ten Commandments" where Ramses is accusing Moses to the pharaoh and adding little weights onto a balance scale for each accusation until it tips his way.  But then Moses adds a single BRICK onto the other side outweighing all the other points.  Well the ONE benefit of chemotherapy is kinda like that to me.  It's ugly, dirty, nasty, and horrible to look at - but if it does the job, it FAR outweighs everything else.

Ultimately though, our trust is NOT in chemotherapy, or even in miracles.  Our trust is in the One who holds the future - regardless of what it brings.  And though we shudder, and cry, and lay awake long hours trying to turn off the awful thoughts and images of what might be in our weaker moments, we know in our hearts that there is only one Source of Hope.  For if God is not in control, or He is not good, or He does not have our best in mind ... well then there's no such thing as hope ... only luck, if even that.  But we know these things are true for we know the One who IS the Truth.  And we've put all the chips on His "square" as it were.  It's all or nothing on God. 

And so - as best our faith allows us, we say with Job, "yea though He slay me, yet will I trust in him" (Job 13:15)  or with Daniel's three friends Hananiah, Azariah, and Mishael, "...If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king.  But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up." (Dan 3:17-18)

Thanks for all your prayers and support.  We cherish and need every one.



- Tim -

P.S. Please also remember to keep Joey Keller and his parents in your prayers too.  Join their CaringBridge site here:
http://www.caringbridge.org/visit/joeykeller

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