Sunday, January 20, 2013

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 1st, 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 175th 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 9th 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 23rd 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 4th grade just a couple weeks past our normal time. So far 5th 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 2nd 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)

Picasaweb:(full size. No account needed)


Other Miller Links: 
 
Daniel’s Caring Bridge site here:
 
Tim’s Facebook page:
 
Andrea’s Facebook page:
 

7 comments:

  1. You guys thanks so much for the update. This was terrific and so good to read everyone's take on life. Daniel we still pray for you all the time, and my Daniel (also 11 years old) is in 5th grade too, having missed a year of school some time back.
    Tim and Andrea - keep holding on to each other. It is tough but you can do it.
    Sincere regards to you all
    Julie and Walt Knight, Daniel and Andrew and of course Angel Brendon.

    ReplyDelete
    Replies
    1. Thanks Julie! Much love & many thanks to you all as well.

      Delete
  2. Loved reading everyones update. Learned a lot too. Andrea; I never knew you had sleep apnea. No wonder you have no energy. I also have sleep apnea. I also have narcolepsy. I sleep with CPAP. Before the CPAP I was so tired and had no energy,that was my everyday scenario. With my CPAP, life is so much better. I sleep better, longer, deeper sleep. I wake up feeling refreshed,like a different person. You need to get that checked out. Do you know that you can die in your sleep from sleep apnea? Did you know that sleep has everything to do with your weight and metabolism? Sleep Apnea:breathing stops during sleep:no oxygen to heart or brain.

    ReplyDelete
    Replies
    1. I have a hard time imagining sleeping with an octopus looking contraption on my face. Was going to check out the mandible device first to see if it helps. I may yet resort to trying the machine, but trying all other options first. Also is hard to sleep cuz of chronic back/joint pain. I honestly can't imagine what it would feel like to wake up refreshed and not feeling like I've been beat up. I appreciate hearing reports of those who have gotten help and feel better. Thanks for the info!

      Delete
  3. Loved your update!!! Thanks so much for taking the time to write it so that we can see God's handiwork over the year!

    ReplyDelete
  4. I don't go on Facebook very often. When I did I could tell you were having some kind of medical challenge. I had no idea how extensive it was. I so appreciate your taking the time to publish this blog. I read every word of it...fighting tears, and so grateful for God and his blessings in your life. I admire how you parent your young son. Keep up the good work.

    ReplyDelete
  5. Your family is an inspiration to all of us! With much love! Michelle

    ReplyDelete