Today's The DAY!

Today's The DAY!

We've been celebrating important "last time" milestones over the past couple of months as Daniel has neared the official END of chemotherapy. 1210 days ago, we got "the diagnosis" and the following day Daniel underwent surgery to install the portocath ("port") in his chest and begin this 3-1/2 year gauntlet of chemotherapy for Acute Lymphoblasic Leukemia (cancer of the blood / bone marrow). Today is the END!!

In some ways, it feels a bit anticlimactic since we celebrated the last spinal procedure in February and the last IV infusion in March. Since then, he's only been on the daily oral drugs. Moving forward, we'll still be coming to Riley every month for blood draws and "check-ups" for another year and then every 2 months for some time after that (uggh!) So there's still way too many hospital trips, doctors, and needles in our lives, but the significance of today is still ENORMOUS in so many ways.

We're eternally thankful to friends and family who have stood by us throughout this ordeal and kept us covered in prayer and so many other "helps" along the way. And most importantly, we thank our loving Father Who has sustained us, brought comfort, peace, patience, and even joy through the dark days and worked "A.L.L. things together into a pattern for good" (Rom 8:28) in the midst of it all.

For 3-1/2 years, we've seen the famous "bell" hanging in the corner of the Riley HemOnc clinic that kids get to ring when their chemotherapy ends. We've rejoiced with those we've heard ringing it (far too few), we've cried for those who never will (far too many, and several of whom were our friends), and we've often looked longingly at it in anticipation and prayer for this very day. And today, at long last, it is here! In reality, it's a simple thing. There won't be much ceremony, and probably not many people, but it's an indescribably momentous event for Daniel to finally get to ring that bell for himself, and for Andrea and I to see it happen.

Most of the history of our journey is captured right here in this blog.  I started it the day after his diagnosis back in January of 2012 and the vast majority of the posts have been about this journey. 

There's also our CaringBridge site here:
http://www.caringbridge.org/visit/danieljmiller

P.S. For those wondering at my weird "A.L.L. things together" statement, it's a reference to a blog post I made early on in this process when God made a special link for me between the word "all" in Rom 8:28 and Daniel's specific type of leukemia which is named "Acute Lymphoblastic Leukemia" or "A.L.L.". So the verse became very personal for me when God showed me that A.L.L. things work together for good. I wrote about it here:

http://timmillersblog.blogspot.com/…/unscheduled-trip-back-…

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 -

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 -

2012-13 New Year’s Letter

Family and Friends;

Greetings!  We hope you’ve had a wonderful Christmas and holiday season.  2012 was an eventful  year to say the least.  It’s been a challenge for us to even get this letter out!  Yet we wanted to try to sum up the way each of us experienced these past 12 months and, in some way, to say thank you to all who have been a part of it with us – through your prayers, help, encouragement, and thoughts.  We’ve appreciated each one of you through both the dark times and the highlights.  Thank you all!

                        TIM’S CORNER

The Miller School of Chivalry

As I write this (Jan 2nd), I recall a year ago at this time when Daniel was suffering daily, horrible head and body aches, frequent fevers, and I was in near panic searching for any possible forms of treatment - traditional, chiropractic, holistic, or faith healing for some kind of answers for  Daniel.  The events that followed in the next few days changed our lives forever.

Page Training

For the past couple years, I’d been designing a program to be more “intentional” in my father-son time with Daniel.  It would focus on activities ranging from Bible study, to learning crafts & trades, to P.E., to developing character virtues and manners using the theme of “chivalry” to progress through ranks from “Page” to “Squire”  to “Knight”.  On Jan 1^st, 2012 we inducted Daniel into the “Miller School of Knighthood and Chivalry” after taking his oath and signing his “Page’s Pledge”.  He received an honorary dagger and a “Certificate of Induction”.  (See picture links at the end)

An Unexpected Change in Character Development Curriculum:

However, we had no sooner gotten started when my curriculum took an unexpected detour.  On 1/5, we had a doctor's appt. at Riley hospital.  I’d been extremely frustrated with previous doctors’ inaction and expressed to her the seriousness of Daniel’s symptoms.  She listened to me and we began with some blood tests   The appointment ended and I went back to work.  A few hours later, she left a message telling me that she was concerned about the test results and had scheduled an appointment the next morning for a bone marrow biopsy.  I was pleased that she was being “proactive” but I’m glad I didn’t understand the implications of her ordering that test or I wouldn’t have gotten any sleep. 

The next morning, we were back at Riley for a bone marrow test.  The doctors met with us in the recovery room and broke the news ... Daniel had Acute Lymphoblastic Leukemia (A.L.L. for short) – cancer of the bone marrow.  It was similar to Andrea’s C.M.L. diagnosis from a couple of years prior, but the treatment would be very different – full blown chemotherapy.  He was immediately admitted to the hospital and surgery was planned for the following morning to install a “port” (an under-the-skin pin cushion) in his chest through which they would administer the hundreds of injections and blood draws over the coming months along with the first spinal tap. 

We cried – all of us.  Our world stopped, spun backward awhile, and then flipped upside down.  Breathing became a labor-intensive process.  We phoned, texted, and emailed family and friends.  And I wrote my first blog entry on http://timmillersblog.blogspot.com titled “Jan 6, 2012 - A Date of Infamy”.  The doctors told us how he would be “immune compromised” for the next 3 years or more and we began to learn the lingo, process, and what our lives were going to look like for a long time.  We learned how to monitor his health, about new diets and drug restrictions, and how to protect him from infections … especially molds & fungi.  I instantly thought about the lousy old carpets in our house that we hadn’t yet been able to afford to replace.  More than once, I’d discovered mold hiding under it during repairs.  So I decided I would rip them out now and just put sealer on the underlayment until we could replace the actual flooring later when we had the time and money.  I wouldn’t allow Daniel into the house until everything was at least sealed.  But I knew tearing out all that carpet, cleaning, and sealing was going to be a huge job – especially while trying to keep up at work and spending huge amounts of time at the hospital.

God Comes Through:

Daniel at Riley Hospital

God showed up early in all of this though.  Of course, He’d never really left!  We were immediately surrounded by family, friends, and a constantly growing army of people willing to help.  My folks volunteered to let us stay at their place until I deemed the house safe enough for Daniel.  We were admitted to the hospital on Fri 1/6.  On Sunday morning (1/8), I made a brief Facebook petition for volunteers that afternoon to help me start pulling up carpet – I would be home by about 2:30.  Most people I knew were at church and unlikely to see the post until much later.  I headed home about 2p.  By the time I got there, my driveway and entire front yard was filled with cars.  I never counted, but figure about 20-30 people showed up - one even drove up from Kentucky to help!  When I walked in, the job was nearly done.  They boxed up our Christmas decorations, moved the furniture from 3 rooms, and tore up the carpet, padding, and tack strips from every room.  Already home, Andrea was overwhelmed with trying to direct the work, or answer many of the questions.  I left instructions, and scrambled to the store to pick up enough sealer to do the whole 1st floor.  Andrea ordered pizzas, and then headed back to the hospital to be with Daniel. By the time I returned almost everyone was gone and all the carpet, pad, and tack strips were loaded into my trailer.  “Awesome” doesn’t cover it.  A job I expected to take at weeks was done in a couple hours.  It was only the first of MANY blessings God would be sending our way.

With the help of other great friends over the next 2 weeks, I was able to purchase and install laminate flooring in most of the first floor (all except the hallway & entry which will require some repair first).  I blocked off the Family room from the dogs, bought a special air purifier, and made it Daniel’s room for the foreseeable future.  With the new easy-to-clean laminate flooring, no stairs, and immediate access to a bathroom and small entertainment center, it was a much better choice for him than his bedroom.  This set up remained largely unchanged throughout 2012.

A Very Long Year:

Daniel & Papaw after the State Fair

The year has consisted mostly of innumerable trips to Riley Hospital, mid-night ER visits with fevers, many scheduled & unscheduled hospital admissions, learning to give chemo drugs at home, and my working some horrendous hours at work trying to make up for all the time at the hospital.  But through what can only be described as another miracle of God’s timing and providence, my employer has been wonderful.  Not only has the work been mostly enjoyable, but the insurance is considerably better than any of my previous employers, and my boss and team have been incredibly accommodating with my work schedule.  It’s meant precious little time at home with the family in the evenings and that’s been hard on everyone.  Daniel complains he never sees me anymore even though we’ve probably actually spent more time together this year than several previous years – it’s just all been in hospital rooms on fold-out chairs, often with him asleep.  My clearest memories of this past year revolve around endless hours of research; long sleepless nights of alarms, and nurses, and urinals, back massages, endless McDonalds food, uncountable Facebook/CaringBridge/blog entries; and prayer … lots and lots and lots of PRAYER.  

Some FUN Along the Way:

Daniel's 1st Small Plane Flight

There were of course MANY other things happening this year too –there were also good times & fun activities.  In Feb and March, I taught a class in Genesis at a local Bible college and currently teaching a class in Systematic Theology in the evenings.  In March a number of our musician friends put on a benefit concert for Daniel to raise awareness and money to help with his medical bills.  We were blown away at the response and the generosity of those who performed (some coming from other states!) and those who attended.  In May, Rolls-Royce sponsored several cancer patients at the Indianapolis Motor Speedway for Carburetion Day. It was Daniel’s first time to the Track!  He was given a huge duffle bag filled with gifts, and visits from the drivers and the Mayor.  In June, Daniel & I visited the Air Force Museum in Dayton.  In July a friend from work, and fellow pilot, flew us to Greensburg for dinner – it was Daniel’s first flight in a small plane (since Daniel’s own dad hasn’t been flying since he was born!)  In Sept, I was invited back to Lawrence United Methodist Church, for their 175^th anniv. (I had been a Youth Pastor and on several committees & boards there for many years).  In Oct, we attended two Renaissance Faires – and in Nov, Andrea put together a wonderful surprise birthday party for my 50th.  She also collected nearly 50 personal notes from friends and family and put them into a binder for me.  It’s one of my most prized-possessions.

Joey:

Daniel & Joey Keller at Joey's 9th bday pty

In July, we attended the 9^th birthday party of a very dear friend of ours named Joey Keller.  Daniel and Joey had met in our homeschool co-op.  Joey had been battling a very serious form of brain cancer for the past couple of years and so they became much closer when Daniel was also diagnosed with cancer.  Over the past year, our paths crossed frequently with the Kellers and we often exchanged experiences and MANY prayers for one another.  We got to know one another much better.  Joey became markedly worse in October and we began praying very often for them as a family.  I felt led to set up some on-line prayer vigils to schedule people to pray around-the-clock for the Kellers during some of the worst times.  Joey recovered briefly and our hopes soared. But after a couple of weeks his cancer returned and his condition deteriorated rapidly.  He went home to be with the Lord on 11/18 and we were all absolutely devastated.  Having fought constantly against this very nightmare ourselves for the past 11 months only to watch it happen to our friends Nick and Elizabeth cannot be expressed in words.  We continue to solicit your prayers for them and Joey’s grandparents as well.

Thank You!

There are many more people to whom we owe a debt of gratitude than I could ever write thank you notes to this year, but again here I will express my deepest and most sincere gratitude to the many who have come alongside us this year.  From helping with the house, to bringing food, to financial gifts, to going shopping with or for us, to the fathomless amounts of prayer which has gone up on our behalf … thank you!  And may the Lord richly bless you as only He can in the coming year.

ANDREA’S CORNER

As you have seen, this year has been one of stretching, growing, crying, and above all else, trusting in the Lord.  Never in a million years would I have thought our son would get Leukemia also.  Tim and I have both frequently said that if we could trade places with Daniel we would in a heart-beat!  But, for whatever reason, this is the road we are on.  

Our new “normal” has been changed for years yet to come.  I never expected to spend Valentine’s Day, Easter, and Mother’s Day at Riley hospital with either clinic appointments, or admissions due to fevers.  Nurses, needles, hospital lingo, etc. have all become common-place for us now.  I still remember walking through a grocery store once, looking at the “healthy” kids, and wanting to scream inside, “it’s not fair!”  But, if I am honest with myself, I have to admit I have seen our family draw closer, and grow more this year than ever before.  The outpouring of love and help from our brothers and sisters in Christ has been overwhelming!  All the meals, help with cleaning, running of errands, financial help, and especially the prayers have been our life-line this past year.  The growth and maturity I have seen in our son as he gone down this path has been humbling, and makes this momma’s heart swell!  

I’ve struggled with my own health issues during all this too.  I started seeing a new holistic Dr. and he has me taking a fistful of vitamins now daily.  Some have helped, but I struggle daily with low energy levels, body aches and pains, and stomach issues.  A lot of it may be side-effects of the oral chemo drug I take, and will be on the rest of my life. This year I became a distributor for Young Living Essential Oils, and have found some to be helpful at helping me keep from catching bugs so easily.  I had a sleep study this spring and was also diagnosed with Fibromyalgia, and Sleep Apnea.  I still haven’t done much to address these issues.  This spring I developed a bad case of Planter Fascitis in my left heel, and am seeing a podiatrist.  Walking is very painful most of the time now.  

But despite of all the health issues, we’ve managed to have some fun this year!  We had play days, trips to the park, and pool days this summer.  In the Spring my cousin Ed from Tampa was here a couple of times on business, and one of them both he and my cousin Kammie and her family from Evansville were over for dinner.  I was so happy to get to spend time with them!  We finally made it to the State Fair with the Grandparents and cousins and Daniel had a ball. Unfortunately shortly afterward Daniel got the flu (probably at the fair) and ended up back in the hospital for several days.  We spent Labor Day weekend at Turkey Run Inn while friends from church camped.  We were giving Daniel his last at-home IV chemo treatments in the hotel!  In spite of the heat and rain we had a great time.  Daniel also had fun dressing up for Halloween this year as a character from one of his video games.  He looked great, and had fun trick-or-treating with our dear friends the Loobies.  We also got in our annual trip to the pumpkin patch, and Daniel and I went to the Headless Horseman hayride at Conner Prairie for the first time. We had hoped to spend Thanksgiving in Iowa, but with the sad news of the passing of our dear friend Joey Keller, attending his Celebration service the day after Thanksgiving had to be our priority.  We still enjoyed a delicious meal with Tim’s family and extended cousins at a local restaurant.  In mid-December we celebrated our 23^rd anniversary in Nashville, IN and enjoyed walking around town, touring Oliver Winery, and seeing “The Hobbit.”  Daniel and I both had pretty bad colds, but we still had a great Christmas with the family.  

We continue to homeschool Daniel, and that has been a huge blessing with our schedule now.  Daniel would have missed so much time if he were in public schools, but finished 4^th grade just a couple weeks past our normal time. So far 5^th grade hasn’t been far behind normal, and Daniel is doing well with his studies.  Having had to miss most of the second semester of co-op and AWANA 2^nd semester last year, it’s been nice to be involved again this school year.  He’s missed some meetings due to low blood counts, and the bugs going around, but has been able to participate a little more recently.  We got rid of our chickens and miss the fresh eggs, but couldn’t keep up with their care with all going on this past year.  We still have our two dogs, Diezel and Samson, who have lovingly been by our sides through thick and thin.  This year has been a stretch for them as well!  We briefly had a pet garter snake, but released her this fall back to the woods.  Our newest family member is Daniel’s Leopard Gecko named Draco. We’re hoping and praying that 2013 will be a “healthier” year for the Miller family, and that we will continue to grow ever closer to the Lord and to each other as we continue this journey together.

DANIEL’S CORNER

This past year has been the most intense year of my life.  The worst things were being diagnosed with A.L.L., which was the worst of all, and all that came with it – getting the port installed, all the shots, spinals, chemo drugs, bone marrow tests, being admitted to the hospital so many times, not being able to have play days (because of low counts or having to stay away from others who might be sick), and not being able to eat many of the foods or places I like to eat, and losing my hair.  Although they were very hard, tough, intense, and stressful, I’ve made it through, I’m OK, and now that I’m in the Maintenance phase, things should go smoothly.  

Christmas at Tim's folks'

Other than all the bad things, I’ve had a fairly good year.  I’ve gotten many presents and surprises, such as my Nintendo DSi (which Dad would have NEVER let me have if it wasn’t for Riley), my “small” Make-A-Wish Foundation gift (a giant LEGO Star Wars ship with an eight-legged tank), making several new friends in the cancer ward at Riley, getting to know Joey Keller better, and the nurses – some of whom I’d almost consider to be close friends now, and many new LEGO sets.  We had a great Christmas this year, and I can hardly believe I’m 11 years old now.  I actually feel older this year – taller, stronger, and more mature.  I always remember looking up to others who were 11 years old, and now I’m 11 and I want to be the kind of person I most appreciated in older boys when I was young.  I remember certain friends who never left me out or walked away from me when I was littler than them and I remember how that made me feel. 

This year, I’ve also learned a lot spiritually.  I’ve learned a lot about spiritual warfare, and my dad taught me how to visualize Jesus sitting next to me and I use that a lot when I’m fighting depression or feeling anxious, or sometimes just to have Him with me.  I look forward to my hair coming back in to be as long as it was before.  I hope everyone else had a good year last year and will have a great year in 2013.  I’d like to say a big thank you to everyone for all the great presents, cards, games, visits, and those who looked after me (especially the one who brought cookies!)   Thank You!

Wishing you all the very best in 2013,

Tim, Andrea, Daniel,

(Samson, Diezel, and Draco)

To see our "Best of 2012" Photo Album, please visit one of the following links:

Facebook: (small size. No account needed)

https://www.facebook.com/media/set/?set=a.10151451554964913.545849.665739912&type=1&l=9ca225c0e8

Picasaweb:(full size. No account needed)

https://picasaweb.google.com/tmiller42/2012BestOfPubSm?authuser=0&authkey=Gv1sRgCIjh_5es87uu5gE&feat=directlink

Other Miller Links: 

 

Daniel’s Caring Bridge site here:

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

 

Tim’s Facebook page:

https://www.facebook.com/tmiller42

 

Andrea’s Facebook page:

https://www.facebook.com/abm1989

 

Remembering A Year Ago Today

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

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

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

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

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

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

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

Grace and peace to all;

- Tim -

No Piggy Flu Here!

Passing on Andrea's latest CaringBridge post on Daniel & us.
Mirrored from http://www.caringbridge.org/visit/danieljmiller/journal

No piggy flu here!

Written by Andrea Miller

Quick update on Daniel.  He was put into quarantine at Riley pending the outcome of the cultures taken for bacterial and viral infections.  This meant we also had to be in a gown, mask and gloves the whole time we were with him in the room.  REALLY was not comfortable.  Don't know how Tim did it sleeping in that.  

He was released late Sunday afternoon as the bacterial cultures had not grown anything during the 24 hr time period needed.  He is still coughing and tired.  His hair, which had pretty much grown back, is now falling out by the fistful. His counts are still very low, but beginning to make a gradual come back.  His clinic apt. for this week was canceled since it was count dependent and was very unlikely his would be anywhere near the min.needed to begin the 2nd half of this phase of treatment.

Today Tim got a message from his Dr. that they did get a positive culture on the viral test.  He has Parainfluenza - mild case of the flu (go here for description:  

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002346    )
The description of his symptoms is right on target.  We are so thankful that he did not have the new strain of Swine Flu that they have been seeing at Riley.  There is no treatment for this, other than just watching to be sure cough doesn't worsen, temp doesn't go up again, or any other symptoms develop.  I too seem to have caught the same thing as I've been coughing a lot and had a runny nose and achy.  

He'll be very limited on activities as we minimize his exposure during recovery from this, as well as not expose any others to it.   Thanks again to everyone who has been praying for him and us.

Adding my own thoughts (Tim):

It was indeed a rough weekend at the hospital having to constantly be dressed in full gown, mask, & gloves - even sleeping that way.  Thankfully, Daniel's symptoms didn't worsen over the weekend. Unfortunately, they haven't really gotten much better either. And now it appears Andrea has it and it's trying to get me.  I felt lousy all day but trying to kick its butt with lotsa vitamins, good food & rest.  Usually I can stave off such things, but we'll see, the stress of recent events at home & work doesn't help.  

It's been rough watching Daniel turn back around and start losing all his hair again ... really fast!  It's everywhere and gets him really frustrated too find hand-fulls on his pillows and clothes. The doctor said it takes about a month after a particular chemo treatment before it actually starts making hair fall out, so we're seeing the effects of something he had a month ago - probably a drug called Doxorubicen, but even the doc wasn't 100% sure.  He had three treatments with the last one having been as recent as 8/1. So if the effects don't show up for a month, then all we're seeing now was just from the very first one.  So we're not holding out a lot of hope of keeping any of his hair this time.  He actually had 4 treatments at the start of all this back in January and he only lost about 1/2 or 2/3 of his hair.  But he's been through a lot more leading up to this time and some of the nurses have said it's common to lose it all on the 2nd round.  We'll see.  That will be hard on him.

During the stay in the hospital, Daniel discovered a WW-II video game they had for the Play Station 3 in his room that he really liked.  I bought him a used copy for his Wii at home as his "prize" for having had to be admitted (we always try to reward his bravery with a gift of some kind when he has to be admitted - it has helped a LOT to have something positive to look forward too.)  So he's REALLY been enjoying this game since we got home, and after 10 years of pestering from Dad, he's finally interested in something having to do with WW-II (a huge hobby / interest of mine).  So of course I've been capitalizing on this big time and it's been a lot of fun for us in the evenings alternating between watching old WW-II movies and playing his new game on the Wii.  :-)  Any moments of "fun" (not to mention togetherness) we can pull out of all the bad things going on in his life right now, I latch onto with both hands!

As Andrea described, we've delayed the start of the 2nd half of this final intensive phase for at least a week.  One last big push - about a month's worth - and we'll be into the Maintenance phase.  Even that's nothing particularly easy, but it's a lot better than what we've been through and, hopefully, will become routine fairly quickly.

As always, we so VERY much appreciate your thoughts and prayers. And we ESPECIALLY appreciated the entire Horizon Youth group dropping by on Sunday just as Daniel & I were coming home from the hospital.  They helped with cleaning the house and lots of yard work.  Please keep all of us in your prayers to get past the flu invasion at our place quickly, and for Daniel to get through this last month of intensive chemo as quickly and courageously as possible.  And of course, our standing prayer requests are always for complete healing, no complications, and for God to be glorified in all of this.

Please also remember to be praying for Joey, Elizabeth, and Nick Keller and to keep up with their CaringBridge site as well: http://www.caringbridge.org/visit/joeykeller

Grace and Peace to all,

- Tim -