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.