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 Parenting (and Homeschooling) Victory for Dad

"I'm both happy and mad at you" Daniel said to me.

YESSSS!  The words were music to my ears.  This was a major homeschooling victory for dad!  

This is a somewhat different post than has been common to this blog, but I just had to share the fun we had last night.

Last​ Monday, Andrea came to me in a huff stating that Daniel refused to do the writing assignment she'd given him and had in fact drawn a big red "X" in crayon through the lesson in his book.  He's not been doing well in writing - particularly creative writing - and she had him doing extra lessons in a supplementary workbook.  When I asked Daniel about it, I was expecting to hear that the extra work was too much for him.  He's been complaining about being overloaded lately and unable to get all his work done, etc. (even though it only takes 3-4 hrs a day.)  But that wasn't his response.  What he said was that he didn't have the creativity to come up with the things he was supposed to write about.  It was seemingly painful for him to have to come up with a story to write even a single sentence or a paragraph.  I told them I'd think about it and make a decision later that evening.

The furnace went out this week, so I've been a bit distracted with getting it replaced, but yesterday (Thurs) I finally told Andrea that I wanted him to do the extra lessons, but I wanted to do them with him, at least in the beginning.  My thinking was that I would try to make this fun for him.  Encouraging creativity in him is something I've wanted to do all his life anyway, and I know I've been dropping the ball of late.  So this was a good chance for us to find a way to connect, foster creativity, and have some fun (hopefully) as well.

Just before dinner was ready, I opened his book to the assignment he'd crossed out and read the instructions.  It was to create a single paragraph telling a story about being a scientist or archaeologist of some kind and making a great discovery.  It could be about making the discovery or about the object itself.

I said to Daniel, "QUICK, think of either another country or another planet and tell me what it is.  There was too much delay as he looked strangely at me and thought it over.  "DON'T THINK, just answer!  What's the first thing that comes into your mind?"  

"Mars" he finally said.

"Perfect!  Now decide what your job is.  Are you a scientist, a xenoarchaeologist, a prospector, ..." and I listed a few others.  He asked what a prospector is and then picked that one.  "You are a Martian prospector out wandering through the Martian country side with your trusty pack animal beside you called a ... what's it called?..."

He thought for a moment and slowly sounded out "a blarsil" (or something like that).

"Now, as you and your blarsil walk along the Martian desert landscape, you see something up ahead slowly coming over the horizon ... what is it?" I prompted him.  And so we continued on creating a story with a little prompting from me and the basic story elements coming out of his head.  Slowly, he began to get into it.  In fact, I was a bit surprised at how difficult it seemed to be for him, but he gradually got into and the "juices" began to flow.  As dinner progressed, a story formed and we were both having fun with it.  I encouraged him and congratulated him on his creativity and after 10-15 minutes we stopped and I said, "do you see what you've done here?  You've already come up with WAAAAY more than the single paragraph you needed.  You've got the bulk of a great short-story here.  Heck, you could write a series of BOOKS about this character you've created!"

"How am I going to fit all of that into the paragraph space provided in the book?!" He seemed almost panicked. 

"You don't have to!  Just pick a small part of your story - the part where you discover the giant green gem stone in the dragon's nest," (yes that was really part of the story) "and write your paragraph about that part.  Do you see how easily this came to you?  You have a WONDERFUL imagination in there, you just need to unlock it and let it out!"

He stared at me and then back at the page.

"Now you want to write your whole story down don't you?!" I laughed.  "You enjoyed that and you're even thinking of where it can go next, right?" 

He smiled and laughed in agreement. "Yes."

"If you're not careful, you could find you have a real talent for this." I offered with a big grin.

"But you were the one asking all the questions" Daniel parried, looking for excuses as to why this wasn't really something he could do.

"I only showed you how to start the process, how to get your imagination going." I answered. "You can ask those same questions to yourself, or just close your eyes and let the story come to you.  If you stare at a blank piece of paper and think about the words you need to write, you'll likely freeze and get nowhere.  But if you put the pencil down and close your eyes, and let your mind create a fantastical place and begin to tell a story, you'll be amazed at the places you'll go and the people you'll meet!  I was prompting you to do something we call 'association' or 'free association'."  I then proceeded to explain how it worked with one person prompting with a single word and the other expressing the first thing that popped into his mind.  We tried it and enjoyed the "game" that followed.  "See," I said "this is how you let your imagination go free.  And the more you do it, the easier it will become.  It's like a muscle that needs to be exercised to become stronger.  But it's always there, waiting to be let out."

He looked thoughtfully at me and said, "I'm both happy and mad at you."

I leaned back and let out a belly laugh.  "You really wanted to hate this writing didn't you?!"

He smiled and nodded his head.

I went on to tell him about a story I'd written in my own 7th grade Creative Writing class that had a surprise twist in it and really impressed my teacher.  Andrea shared one of hers too, and it was wonderful to see the enjoyment and excitement in his eyes.  He then insisted the 3 of us play the "free association" game for the next hour or more until Andrea & I finally put a stop to it.  I tried a few more exercises with him explaining the difference between coming up with "logically associated" words, and truly "FREE association" and we experimented.  We talked about clearing the mind and "observing" the first thought that came up in response to a prompt word and tried that exercise too. 

I deeply hope that last night's fun made a big and lasting impression on him.  I'll continue to work with him in this regard, but I deeply desire to inspire a love of writing in him as I have.  If I can make my son mad at me for making him enjoy a school assignment, then I have won a great victory.

Nearing the Finish Line

Nearing the Finish Line

    Goodness!  I can't believe it's been nearly a year and a half since my last update on Daniel's chemotherapy.  The good part is that it has meant that there hasn't been much "remarkable" about the past year. The less-than-good news is that it's still been a horrible experience to take your child through the nightmare/blessing of chemotherapy and the fact that it seems "unremarkable" is just testimony to what you can actually get used to - at least on some level.

    My post today is because we've come to a HUGE milestone for us!  Three years, one month and 18 days ago (that's Jan 6th, 2012 if I counted correctly), this difficult journey began when Daniel was diagnosed with A.L.L. leukemia.  One of the most difficult portions of the journey for Daniel has been the relentless stream of spinal tap / IT injection treatments along the way - 31 including today's.  But today, God willing, is the LAST ONE!  While the rest of his chemotherapy will continue through most of April, today may be the biggest milestone to which he's been looking forward. 

     Please keep us in your prayers today, that: A) nothing would go wrong this last time, B) that he will be able to keep his nerves under control (always an issue), and C) that it would truly be the LAST time he has to go through this. 

     THANK YOU to everyone who has been following, praying for us, and walking alongside us through this nightmare.  We thank the Lord for you all and for how very much your love and support has meant to us through these days.  Through you, He has loved, held, supported, and sustained us through places we would surely never have been able to persevere.  We've suffered a little, learned much, loved much, gained many new relationships, and lost some precious friends along this path.  The end is in sight.

     The first attached photo shows Daniel just a couple days into his treatment in January of 2012.  Standing with him are two of his best friends, Daniel A. on the right, and Joey K. on the left whom we lost just 10 months later to Medulloblastoma.  The rest are just a few highlights from along the way.

Thirty Days of Thankfulness for my Wife

For the past few years, many have undertaken, during the month of November, to post something new each day on Facebook for which they are thankful in the spirit of Thanksgiving later in the month.  This year, I want to post 30 things for which I am thankful in regard to one particular person around whom a great deal of my life revolves ... my wife, Andrea.

There are in fact far more than only 30 thing about my wonderful wife for which to be thankful, but I thought I'd pick the top 10 in 3 categories: Inside (her inward beauty), Actions (how that inner beauty expresses itself), and Outside (her outward beauty).  Other than the categories, they're in no particular order.

Inside:
1. Humor - This is one of the greatest things about Andrea.  She is fun, funny, and loves to laugh and joke.  From what I can tell, she always has.  Her relationships with her best friends is largely based on humor and fun.  Though health problems have dimmed the humor in our lives of late, it's always there ready for a good belly laugh or a quick jab or a practical joke.

2. Intelligence - Her intelligence is one of the first things that attracted me to her.  Well maybe not the very first, but it was up there.  Though I too often make fun of her for not getting all my jokes, she has always been amazingly bright.

3. Faith - From our very first "kinda-date" with a group from church, we hit it off with a common faith and a deep reverence for our Lord and His reign in our lives.  That faith has pulled us through innumerable storms over the past 24 years and through it all, she has remained steadfast, dedicated, and always growing in her faith in our Lord and Savior, Jesus Christ

4. Wisdom - She has often been the voice of wisdom into my life and for our family.  Though she does not often speak up or against my course of action or decisions, when she does, it is almost always to bring needed balance, direction, and counsel ... in a word, wisdom.  I've watched her grow immensely in wisdom over the years and I hope she will find ways to share more of it with our younger female friends in the days and years to come.

5. Duty - Though she would quickly disagree if I said she had lots of self-discipline, I think the better word for what I see is a sense of duty.  Whether to family, friends, former employers, or simply to what she knows is right, she is always willing to DO what needs to be done - almost regardless of personal cost or pain.  She will likely be surprised to hear me say this, but she is one of the most inwardly strong persons I know. 

6. Honor - Where she gets this from, I don't actually know. :-)  But she has a strong and courageous sense of honor that always wins out over personal inconvenience, fear, pain, or the danger of damaged relationships.  She acts with integrity.

7. Devotion - Whether to God, me, Daniel, family and friends, country, employer, or others, she is a devoted woman to those whom she loves and serves ... often at great personal sacrifice and/or without thanks or repayment.  Once she has committed herself to you, her devotion is fierce.

8. Righteousness - Her moral compass is true and strong, powerfully indicating right and wrong.  Though I've watched her grow over the years in her understanding, or perhaps "application" would be more descript, she is powerfully dedicated to her sense of whatever is right and good and holy and just in whatever situation she finds herself.

9. Gregariousness - In this regard, she is often enigmatic, even paradoxical at times, but I discovered early-on in our marriage that, under the shyness and sometimes difficulty with which she makes friends, Andrea THRIVES on being around people - especially those closest to her, but almost any party will do in a pinch. haha.  While my own social tendencies come and go (mostly going as I grow older), she would almost always be "out" with a group of friends having fun, fellowshipping, or even studying or working ... as long as it's with those she loves.


10. Humility - Make no mistake, there's a temper under there and plenty of stubbornness to go with it.  But in the end, she has learned, continues to grow in, and frequently exercises amazing humility.  As she has further sensed and grown in God's calling upon her life, this has become all the more obvious and expressed in her life ... before God, before her husband, and before others.

Actions:
There are 1001 things that she does through the day, the week, and the years.  These may seem mundane, trivial, and ordinary, but they are the "little things" that make our family work - they are representative of the 1001 things that NEED to happen to keep our family and our lives moving.  And though they may seem small, I know they only seem so because they get done.  When they don't get done, they become very burdensome for me.  Thus, to me, each one is very important and her steadfastness and trustworthiness in getting them done is worthy of my great praise.

11. Homeschooling - While I help with overall direction and a few of the individual subjects, Andrea is the gearworks that makes this happen. She oversees the curriculum, the record keeping, and the day-to-day execution and administration of the Miller Academy of Excellence, and has done so faithfully for 6 years and counting.

12. Cooking - She has become an excellent cook and strives hard to keep things interesting, nutritious, well-stocked and readily available for our family

13. Dishes - Over the years, I've offered multiple times to install a dishwasher, but each time she has refused.  Mostly, this is due to lack of space, but ultimately, it's her willingness and faithfulness to get this job done without complaint that is one of those things that keeps our family going.

14. Shopping - Andrea faithfully keeps our refrigerators and pantry well-stocked, strictly budgets, and is ever mindful of the best deals and, increasingly, of the most healthy options for food as well as clothing and other household items.  While do a significant amount of this for household goods as well, she remains the primary shopper and almost exclusively so for our family's food.

15. Calendar - She largely manages the family calendar.  While I usually do the long-range and "recreational" planning, she's the one who knows "what's going on this weekend", who's birthdays are coming up, and more recently - what's on Daniel's calendar!

16. Banking - As a former assistant manager for several banks, she is good at this.  She knows the system and moves through it with ease.  On those occasions when we've had to change banks or shuffle around how our accounts are managed, she has managed this with ease and wisdom. 

17. Finances - Related to "banking", but different in my eyes, Andrea also manages the daily, monthly, and yearly finances of the household.  For several reasons which include what I wrote under "Banking" as well as various issues in her own family growing up, Andrea is conscientious, punctual, and almost obsessive about getting bills paid on time.  Early in our marriage, this was a rough subject for awhile until we devised a plan to split responsibilities, "personal spending money", and create a general budget plan we could both agree to and follow.  Now, I manage the "big picture" budget planning, and she manages the day-to-day execution.  Since setting this up, it has been a WONDERFUL system playing to both our strengths and (mostly) compensating for our weaknesses.  The time we spent struggling with finances before we worked out this system has taught me to greatly appreciate her abilities and attention to detail in handling the day-to-day execution.

18. Laundry - While I've never had a problem with doing my own laundry, and still help from time-to-time, this is another of those day-to-day activities that she does (mostly) without prompting and keeps our family running smoothly.

19. Medications - By God's grace, this is not something I've had to ever do much management of in my own life - so I'm not that good at it.  But Andrea's health problems over the years, and now with all that Daniel is going through and even our pets, the management of the rather LARGE cabinet of medications, supplements, and other drugs we possess and must take on strict schedules is somewhat staggering in size.  But Andrea has faithfully kept track of these details and managed it consistently and effectively.  By choice, I intentionally stay OUT of this field as I believe having two people involved only invites disaster.  I do my best to stay on top of the "big-picture" and take a VERY active role in general healthcare management and decisions for the family, but again, when it comes to the day-to-day management and execution of who takes what when and how much, Andrea does a fantastic job at it.

20. Cleaning - Unfortunately, both of us seem to have been born missing this gene, and it comes easily to neither of us.  And while I consider myself the "better" cleaner, I'm worse at keeping up with it or even keeping on a schedule despite my best attempts.  In recent years with the various health problems for both Andrea and Daniel, I've taken a far more active role in this than ever before, but it hasn't made it any easier and I'm really no more "regular" at it.  So once again, it is her day-to-day execution of many of these tasks that helps me immensely and is worthy of my grateful appreciation.


Outside:
Sorry folks.  What lies in this category is strictly for Andrea's eyes only.  Suffice it to say, she's a beautiful creature and my physical attraction to her has grown continually over the years.  The details of which are none of your business!  But rest assured, she'll be hearing exactly what I think in the version of this list that she gets.  The rest of you all can just go read Song of Solomon!   :-)

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Happy Thanksgiving  everyone.  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 -