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 -

Joey's Fight Has Ended - Prayers for the Kellers

At 9:35pm tonight, Joey's fight against cancer ended and he graduated to meet His Lord face-to-face.  Joey grew more, had more faith, and touched more people's life in his brief 9 years of life than most of will in 90 or more years.  His legacy and ministry will live on in many, many ways.

While we rejoice that his suffering has come to an end and for the unimaginable joy that is now his, we are still in shock ourselves and cannot begin to imagine what his parents are going through.  Your prayers are still very much needed for them for the days and months ahead as they begin an entirely new battle with grief and loss.

I've never seen a group of people come together - literally from all over the world - to rally around one person the way Team Joey has done for Joey Keller.  God has worked, and will continue to work through the many lives touched by Joey.

His father's posting on CaringBridge from a few minutes ago reads as follows:

"Joey finally met in person (face to face) the person he's loved, trusted, admired, talked to, talked about, and worshipped for years, Jesus, tonight, at 9:35p. Buddy, you loved that song, I'll fly away....you beat me there. Which is not the way it's supposed to be. I will be there soon. I never knew I could love someone like I loved you, son. My heart will be broken until I see you again. You are awesome. I told you often how much I loved you and thought of you. I can only hope to run a race as strong, and focused, and effective as you. In spiritual terms, I look up to you. I love you and am a fractured, torn up person without you. I'll never be right. But I will see you soon. One more time, "Dad thinks you are awesome! You make me happy! I am so proud of you." I'm coming buddy. Pray for me."

I'll try to write more in the near future - but we're all still reeling here. The first thing we did as a family was to thank God for having known Joey and the Kellers and for ending His suffering, and to bring comfort and peace and continued faith to the family.

You can visit their CaringBridge site here to leave a message for them:
        http://www.caringbridge.org/visit/joeykeller

- Tim -

Prayers Needed for Joey Keller Urgently

PRAYER TEAM JOEY:

Just a quick note to get the word out as broadly as possible.  Our Lord has provided miracle after miracle to bring Joey back from death's door in times like this.  We have an enormous army of intercessors assembled on his behalf and we need to rally to his aid right now.  There has been much prayer on his behalf and increasingly so recently.  But in the past few hours, Joey has taken a turn for the worse.  The doctors believe it is the cancer itself again causing these now life-threatening symptoms.

Joey's father Nick just posted these words to their CaringBridge site at about 11:15a:
http://www.caringbridge.org/visit/joeykeller

Desp need prayer. Things have gotten worse very quickly. Labored breathing, can't move his tongue, not responding. This is very bad. We need a miracle. Thinking of Lazarus. Please pray and believe with us. This is not denial. This is faith. To the best if our ability. Never been here before. We are doing our best. 

It's clear that our medical science has reached the limit of its ability to help in Joey's situation and we need nothing short of a supernatural touch from God.  But we've been here several times before and God has consistently answered our fervent prayers and spared Joey's life.

Please join us now in lifting up our little brother to the Lord in intercession and in "warfare" against enemies (both spiritual and physical) who are intent on taking his life.

Suggested Specifics:
1. Pray specifically against the cancer. That it would be stopped (from spreading and inflicting any further damage), destroyed, and eliminated from his body.
2. Pray specifically against any and all spiritual forces that may be set against Joey - command them to cease all activity regarding Joey and his family and to be gone from Joey's room and not to return in the name of Jesus Christ. (Christians are given the authority and the commandment to use His name in this way against evil spirits.)
3. Pray for complete and comprehensive healing and regeneration of all damage and effects of the cancer - or any other form of attack against his body, soul, or spirit.
4. Pray for God's peace, comfort, rest, and strength for Joey and the family.
5. Pray for God to be glorified in all that happens.

On behalf of the Kellers and Prayer Team Joey - THANK YOU!

- Tim -

Staying the Course for Joey

I've updated this blog from its original text after Nick Keller posted some additional information on Joey's MRI.  The news it communicated was even worse than the original posting and frankly, after all the events of the past week nationally as well as some personally, it's been a real challenge to stay positive about anything.  But I found encouragement in my own words here in this post from yesterday so I thought I'd update the info on Joey and repost it in the hope that someone else might benefit also.

Nick's post from Wed morning @ 12:40a:

"We saw the MRI. Major growth on lumbar spine, brainstem, and in temple regions sort of growing towards the center of his brain. It WAS in CSF kind of "on" his brain, now it seems its growing into and through his actual brain cells and tissue. Wicked, evil disease. We discussed hospice and the reports from all relevant medical teams was, "anything else we could do will cause more harm and damage than any potential for help or therapeutic upside." They do believe his unusually high heart is do to the cancer spot/tumor/lesion on or in his brain stem. We flat out need a miracle. Otherwise, what he will have to endure, systematic loss of brain and organ function, system failure, ventilator again, it's unthinkable. They were especially concerned looking at this MRI vs. the one just a month ago (brain) bc Its really moving quickly. We have got to pray. All those scriptures I looked up and listed in previous CB postings on faith and healing, haven't changed. The promises regarding healing...haven't changed. We've exhausted every medical option that exists (due diligence.) Now, We look to God to do what only He can. All day long I kept thinking about the Israelites looking at the Red Sea, the Egyptians racing to basically cut their throats or put them back into slavery. They thought they were dead. Or at best, had no idea how God would get them out this, this time. Slaves for 400 years, finally free, and now this??? To die here, like this? All day long I've been getting texts from buddies and pastors from those very chapters. Don't believe it's a coincidence. The thought keeps going through my head, if its not impossible, it's not a miracle. Thx for praying for our Joey. "

We Christians should see this, NOT as a sign of defeat by any means - but a call to more fervent prayer and fasting on behalf of Joey.  Do not be discouraged.  Do not be disheartened.  God is much bigger than all of this!  What appears like a setback from a worldly perspective is in fact an opportunity for God to show Himself more powerful, more loving, more gracious from a heavenly perspective.  It is often God's "M.O." to ensure that all human means of "fixing" the problem have been exhausted so that, when He does move, there is no doubt to Whom the praise and glory belongs.

It is of course true that God does not always heal people of our diseases and infirmities. We live in a fallen world where sickness and death reign because of the existence of sin and evil.  One day all of that will be done away with.  In the mean time, we are commanded to pray for the healing of others in many places in Scripture ... to lay hands upon, to anoint with oil, to pray, and to fast for them to recover.  Ultimately it is God's decision whether, how, and when to heal someone.  "Prayer" has no power in itself and changes nothing on its own.  We must never credit "prayer" (which is to say Our Efforts), for that which God alone can do.  But we know that He commands us to pray, and we know that He chooses to work THROUGH our prayers.  So our role here is as clear as it has always been.  We must pray BELIEVING.  We must pray for what we (and others) need, and we must pray for those things that are consistent with God's nature - life, health, wholeness, joy, and freedom from pain and suffering.  These things are ALWAYS in God's will for us (and especially for 9 year old little boys!!)  [Matt 7:11, Luke 11:13, etc.]

I don't claim to have an inside line on God's will in this matter - but I do believe very strongly that He has indicated on MANY occasions in the past 2 years that His will is to heal Joey.  I have neither seen, heard, nor felt anything that would indicate the contrary at any time.  And so I will continue to pray, with all the confidence and faith I can muster, for Joey's complete and immediate healing.  If things do not go the way I believe they will, it will not shake my faith in God or in what I believe about His nature.  He is God, He is good, and He is faithful.  I am not qualified to judge Him to be otherwise, and no event in this fallen world that I can perceive through my limited and sinful existence can prove Him to be different.  But if such a thing were to happen, I am determined that it will not be because I did not steadfastly believe, pray, fast, or intercede often enough on behalf my friends Joey, Nick and Elizabeth.

I praise God for Who He is, for His goodness, and faithfulness, and grace and perfect love for all of us.  I praise Him that He has opened the way for me to come before Him and present my needs and to intercede on behalf of others, and that He has promised to hear our prayers.  I also thanks and praise Him that He has promised to always do what is best - even if I pray amiss - and that all things will ultimately work together into a pattern for good for those of us who are The Called.

Father, I thank You and praise You that You are good and holy and loving and merciful.  I thank You that You are in control and for all You have done for Joey and the Kellers to this time.  I ask You now to once again reach down into that hospital room and intervene on behalf of this precious little boy - Your creation - upon whom You have had Your hand and over whom You have kept special watch these many months.  Touch him now again and let your Holy Spirit move upon and within his body to bring healing, wholeness, and freedom from this disease of cancer.  In the name of Jesus Christ, our Savior and Lord, by Who's stripes You have purchased our redemption and healing, I ask that you destroy every single cancerous molecule and cell in Joey's body.  I ask that you prevent every cancerous cell from reproducing and cause every damaged organ, tissue, cell, protein, enzyme, and molecule to be repaired and healed.  Restore balance to his chemical systems and eliminate all unhealthy, damaged, and malignant elements from his body along with any and all sources of such damage, disease, and illness.  I also come against any outside forces - be they physical, mental, emotional, or spiritual - that would affect Joey in any way other than bringing him back toward total health.  I ask that You hold Joey and the Kellers in the very palm of Your hand and set Your hedge and Your guard around them to keep them safe and secure.

I ask You Father, in the name of Jesus, for Joey's life, for his health, and for his immediate healing.  Let your light, love, power, and glory fill Joey, his family, and his room.  Let your supernatural peace descend upon them and guard their hearts and minds in Christ Jesus and let Your armor remain strong and fast about them protecting them from the flaming arrows of the enemy ... doubt, despair, fear, and discouragement ... let them have no place in their hearts and minds.  Send forth Your angels and Your Holy Spirit to raise up an ARMY of intercessors, oh Lord, on behalf of Joey and his family that we may participate in turning the tide of this battle.

Thank You for hearing my prayer and for Your healing power as it moves forth to Joey even now.  You are worthy of all glory and honor and power and praise both now and forever.

In the mighty name of Jesus I ask all these things,  Amen.

If you are a Christian, please continue to pray, fast, and believe with me!

- Tim -

Back On Our Knees for Joey

Friends & Family;

The past 24hrs have seen another downward spiral of our dear friend, Joey Keller's health, and he is back in the Pediatric ICU at Riley Hospital for Children.  According to Nick's (Joey's father) most recent CaringBridge updates this evening, Joey is suffering from a dangerously low sodium level in the brain which is causing bad seizures.  Unfortunately, the seizures then cause the sodium levels to drop further setting up a "vicious spiral" that quickly becomes life-threatening.

It's been one complication after another for them this trip and several other things have gone wrong as well - most significantly, the drug they used to stop the sodium loss seems to be causing some kind of reaction with even more horrible side-effects in this poor little boy.

Our hearts are absolutely broken for all that they're going through.  However, we continue to pray in confidence that he WILL come through this.  We believe very strongly that there have been several indications and confirmations from the Lord that He has a definitely plan for and call upon Joey's life.  Many of us believe that there is a significant spiritual side as well as the obvious physical side to all that's going on.

I've set up a new Round-The-Clock (RTC) Prayer Vigil for Joey beginning now (early Tues morning) and continuing through to Sunday night.

Please join us by going to the following sign-up page to select one or more 1/2-hour time slots when you can pray for Joey, Nick and Elizabeth Keller.

http://www.signupgenius.com/go/5080944ACA62FA20-praying

If you are willing and able to FAST on behalf of Joey as well, we really encourage you to do so along with your prayers.  Remember, fasting doesn't have to mean going without all food.  Fasting is simply sacrificing (doing without) something as a personal discipline in conjunction with your prayers.  Most often it is all food, but could be a single food, or certain kinds of foods, or even something entirely different (such as TV or other media) for a period of time.  It could be a single meal, a day, a week, or a month - that is between you and God.  But we do know that God calls us to fast in Scripture AND that there are certain types of healing that Christ taught only come about through prayer and fasting.

If you have a Facebook account, I've created an "event" for the vigil to get it on your calendar and to be able to communicate with the group in that way here:

https://www.facebook.com/events/292628944180709/?context=create

Please also "like" our permanent "Prayer Team Joey" page here to keep up with future events and stay in touch with other members of the prayer team:

https://www.facebook.com/PrayingForJoeyk 

If you'd like to learn more about Joey and the Kellers and follow their status updates directly, visit Nick's CaringBridge site here:

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

Thank you for keeping up with us (I'll get out a new post on how Daniel is doing soon - but in a word, he's doing great! PTL!! :)

- Tim -

Praying For Joey

I suspect that most who will read this entry will have no use for it as they are much more accomplished pray-ers than I am.  Yet over the past few days, I found myself enormously burdened regarding prayer for Joey Keller.   My times of lifting him up along with Nick and Elizabeth have been extraordinarily powerful, emotional, raw sometimes ... often very specifically pointed at some aspect or other of what's going on or even something completely unrelated.  But what hit most recently was the desire to know that there was continuous coverage for all that has been going on with the Kellers this past week.

(For those not familiar with Joey or his story, please click here for a summary and all the updates: http://www.caringbridge.org/visit/joeykeller.  In short, Joey is a friend of Daniel's from his homeschool co-op and has an aggressive form of brain cancer.  In the past week, things have taken a turn for the worse and frankly, the medical team hasn't a clue why. He is in desperate need of a miracle and there are literally THOUSANDS of people all over the world praying for him - including all us Millers!)

I tried briefly to find some "coordinator" for Team Joey maybe already had something like this, or knew how to put it together, but it quickly became apparent that God was giving ME this task!  I put it off for a day longer than I should have (there's that discipline thing again) until I couldn't stand it any more and came up with a really clunky way of trying to organize it using "events" in Facebook.  Well, to make a long story not quite as long, I created 1/2hr time slots stretching from this past Saturday night through this coming Friday at midnight for which people could sign-up and pray.  I figured we'd be scrounging for volunteers most of the week - especially for the early morning hours - but in a spectacular show of what "TEAM JOEY" is all about (and what God apparently had in mind all along!) Andrea and I were absolutely deluged with people wanting time slots to pray, and we filled up the entire thing ... all 292 slots in less than 1/2 a day. And many slots - even the early morning ones - have multiple people in them because the requests were coming in faster than Andrea & I could update the events!

I'm blown away at what God did through this.  But the goal was of course NOT just filling up time slots, but in providing powerful, comprehensive, round-the-clock supplication ... beseeching ... BEGGING before the throne of God for Joey's life and health and restoration ... so the REAL work lies with those who are signed up - and all the rest who are still praying even though they don't have their names on a list in Facebook!

It is with that thought in mind ... and thinking that there might be some out there who struggle a bit with prayer ... or might even be intimidated at the thought of filling up an entire 1/2 hour with prayer on the same topic ... that I wanted to offer some ideas / suggestions for how to pray for Joey.

If you are an experienced pray-er, or have no trouble filling up an entire 1/2 hour, then what follows is not for you.  PLEASE continue to pray for Joey as loud, long, and often as you can ... and Thank You!

On the other hand, if you could use a little extra help filling up your time slot, or maybe just some different ideas from how you've been praying, then I offer these for whatever worth you might find in them.  There's nothing special about them or the order or the wording ... in fact ... what matters most is that whatever you pray comes from your heart ... not someone else's words or formulas ... God wants to hear from YOU.  But I do believe I can defend each particular statement and its form Biblically if you have questions about how/why some of these appear the way they do.  Normally, I'd have written this out long-hand, but as you can see, I figured it was long enough even in "bullet" form, so I spared you all the book that would have resulted. :-)

May the Lord pray through you and bless both you and the Kellers through your prayers.  Thank you all!

- Tim -

Praying for Joey 

“Be anxious for nothing; but in everything by prayer and supplication with thanksgiving let your requests be made known unto God, and the peace of God, which passes all understanding, shall keep your hearts and minds through Christ Jesus."  (Phil 4:6-7)

General:

• For God’s presence to be powerful, prevalent, and FELT throughout the hospital room and the ward where Joey is
• For God’s peace, power, grace, comfort, hope, and joy to be tangible and “overpowering” in each of the Kellers and to anyone who walks into Joey’s room or deals with him or his parents in any way
• Protection against all enemies – physical, spiritual, emotional, or worldly – that Joey, Nick, and Elizabeth would be firmly surrounded by God’s “hedge”, His own hands, His host, and their own spiritual armor.

Pray AGAINST:

• All forms of cancer, sickness, disease, infirmity, illness, trauma, and stress affecting Joey in any part of his being (body, soul, or spirit)
• Any attack, stronghold, device, or scheme of the enemy affecting Joey, the Kellers, the hospital staff, or any of its equipment or procedures associated with Joey

For Joey:

• That Joey would sense, feel, and experience – in a powerful way – the presence of Jesus with Him and in him at all times comforting, protecting, ministering to, and strengthening him through these trials … to hear His voice, to feel His touch, to see His glory, and to know His peace
• Direct, immediate, complete healing from all cancer, its causes and effects
• Repair or replacement of all damaged tissues, organs, and processes
• Restoration of normal processes & behaviors in every part of his being – body, soul, & spirit
• Destruction of all forms and any sources or causes of cancer or other diseases, infirmities, afflictions, abnormalities, or mutations – physical or otherwise
• Healing from any and all damage caused by recent trauma – physical, emotional, mental, spiritual
• Healing from all the side effects of the medications, procedures, trauma, and stress he’s been subjected to since ALL of this started (years worth)
• For renewed physical strength, health & vigor
• For renewed and increased strength, faith, hope, love, patience, perseverance, joy, and courage
• That he would be a powerful witness in all that he says and does, as well as simply in what God does to him and through him in the presence of the hospital staff and visitors – many of whom are unbelievers
• That all this would bear fruit in a powerful ministry through Joey.  What a testimony he will have!!

For Nick & Elizabeth:

• For renewed and increased strength, faith, hope, love, patience, perseverance, joy, and courage
• For unshakable, child-like, perfect trust in God regardless of what doctors say, test results indicate, or events unfold
• Supernatural wisdom and knowledge to make the right choices; to override doctors when necessary; to know and do what is best for Joey as his God-ordained parents.
• For the discipline and presence of mind to continue to take care of themselves and each other through these ordeals – and to accept or even ask for what they need from other members of the Body of Christ that we may help them bear these burdens

Doctors, Nurses, and other Medical Staff:

• For supernatural , God-given knowledge and wisdom of what to do (and not to do) medically for Joey that is right for him, and in keeping with God’s plan to bring him through this.
• For them to treat Joey, Nick, and Elizabeth with respect, empathy, and sensitivity in how the express thoughts and opinions
• For them to not make errors in diagnosis, treatment plans and execution, following procedures, and protocols
• That they would be open and touched by what God is doing in front of them both to and through the Kellers and the vast “cloud” of believers surrounding and supporting them.
• That they too would feel the power and presence of God in all that is going on in and around Joey and the Kellers … to know and experience the very hand of God upon each of them whenever they enter Joey’s room or the presence of Nick and Elizabeth … that something special is going on here – something vastly bigger than what they’re trying to do with medicine

The Support Team:

• That God would continue to burden the hearts of those who can participate in what He is doing here – through prayer, through visits & encouragement, through providing meals or other services to the Kellers directly, or any other ministry by which we can support, encourage, teach, or help share the burdens they are carrying right now.
• That the Holy Spirit would powerfully pray through those who have committed to specific time slots in the prayer vigil such that the “covering of prayer” would:
• Not be broken
• Would be most effective toward Joey, Nick, and Elizabeth as well as others God intends to touch through these events
• That God would work IN the lives of all those He raises up around the Kellers during this time as well – to bless and encourage them, to draw them closer to Himself and deeper in their relationships with Him, and to more power in their own prayer and service (i.e. deeper into discipleship)
• For God’s blessing and protection upon all those who would give of their time & resources for the Kellers

Over All:

• That God would be glorified in and through these events
• That many would come to know, or know more deeply, His power, love, grace, and holiness
• That the Kingdom would be furthered
• For all those touched by these trials, especially Joey, Nick, and Elizabeth, to receive the maximum benefit from having persevered through the midst of these trials (Rom 8:28) – that God would turn all these horrible things into good in each of their lives, and no lesson would be lost, lest any of this have been in vain.

Celebrating a Major Milestone and God's Grace

Today we achieved a major milestone in Daniel's chemotherapy schedule. This afternoon, Andrea and Daniel went into Riley to receive the last 3 intramuscular injections of the last drug of the last division of the last intensive phase of chemotherapy.  We're a long way from being completely done with the chemo, but from here on out we'll be in what's called the "Maintenance" phase which, other than a few oral drugs, amounts to only one clinic visit a month.  All the really intensive stuff is now OVER!!!!  YIPPPEEEEEEE!!!!  :-D :-D :-D

Don't misunderstand me here, what remains is still not going to be easy.  We're in for more than 2-1/2 years of monthly visits, each one of which will include a spinal tap, a couple of IV chemo drugs, and ongoing oral meds including many rounds of steroids.  We're not out of the woods, but we do feel like we've just emerged from a very long, dark tunnel deep underground.  For that, we are VERY, very thankful!

Over the past couple of weeks, I've been trying to figure out how best to celebrate this major event.  I consider it to be the 2nd most important milestone of the whole chemo course (the 1st of course being the end of it all - which will probably be Monday 4/27/2015 Lord willing).  Unfortunately, most of what I came up with hasn't really worked out ... at least not yet.  Over the coming days & weeks we'll still likely include a few more activities and a gift or two in celebration of his achievement.  But for tonight, our celebration amounted to a (very) nice dinner for the 3 of us and a short awards ceremony.  I'd intended to have a nice gift for him, but as it turns out, he probably didn't really want what I was going to get him anyway (thank you Lord that they weren't in stock today!)

I told Daniel he could pick any restaurant he wanted tonight - "the sky's the limit".  Well he came pretty close to hitting that limit, but we thoroughly enjoyed the nice meal downtown.  We wandered around the mall for a bit and then came home and I was frantically trying to put together an award (that I spaced doing earlier) before he got too tired.  I didn't make it.  By the time I had it ready, Andrea informed me he'd just gone up to bed.  I had to actually drag him back downstairs to do my little ceremony.  He wasn't very happy with that, but he did enjoy what I did for him.

Because of his new-found love of military things, I chose to award him with a genuine Purple Heart medal.  Now before all the vets jump on me about this, let me state a few things up front.  First of all, yes it's legal, I checked.  Second, this is in NO WAY intended to detract from or in any way even compare to those who have earned this honor in service to our country. You have our undying respect and gratitude and IMO the possession of a chunk of medal is not what grants one entrance to the true Order Of The Purple Heart.  Because I knew (and explained it anyway) that Daniel would understand these things, and because he has most legitimately also been wounded (countless times in countless ways) in a very real battle for his own life, and because of his own love for military things, I chose this honor as most befitting what he has been through. I know that it will be cherished and respected for what it really means as well as what it means to him personally and, for me, I believe it's a fitting gift.

What it's really meant to illustrate is that this has very definitely been a war ... a war no 10 year old should ever have to fight ... yet here we are and so we must be victorious.  The enemy may be firing bullets, mortars, and artillery rounds at us, but there are SEVERAL very real enemies with every real weapons, and they are just as lethal to my son's life.  Our enemies are both physical (cancer), emotional (fear, depression, defeat) and spiritual (Satan and his host) and any one of them could (and have attempted to) take our son's life on several occasions.  He bears the scars in his body (surgeries, broken bones, no hair, more needle pricks than you can count), in his emotions, and in his spirit, but he continues to press on.  Sometimes I've literally had to carry him back from the "front lines", other times, he's pushed forward in his own strength and courage, but the battles have been relentless and multi-fronted for over 9 months now.

I've believed for a long time, that this war was not really about cancer. In fact, crazy as it may sound, I actually believe he was healed back in January when we went to visit Solomon Wickey (check the blog history if you missed that story back at the beginning).  But for whatever reason, God did not give me the all-clear to stop the chemotherapy at that time, nor has He since.  We've been in this for the long-haul, not for the cure (I believe we've already received that directly from the Lord), but for the scars.  As crazy as that may sound, we need the scars - we all do.  We don't learn, grow, toughen up, gain patience, endurance, or experience, by having an easy life.  No athlete wins the prize after spending years sitting on the couch.  It takes years of discipline, self-sacrifice, "pummeling" the body into submission (as Paul put it), and enough difficulty to build a drive to want to win.  Likewise, no soldier wins the battle without months of training, discipline, and having his "comforts" stripped away until he is molded into a fighting machine that follows orders without hesitation and reacts to danger with courage, training, a fighting spirit.

Am I saying I think God caused these events to come into our lives? Absolutely not.  Bad things happen for lots of reasons - all of which can be traced back to the presence of sin and evil in the creation at some point, but not because God made it that way.  So we never blame God for bad things.  But yes, God does allow "bad" things to come into our lives, within certain boundaries (e.g. 1 Cor 10:13), and always in accordance with a plan for both our and His greater good and glory (Rom 8:28) IF and only IF we have trusted our lives into His hands (no such promises exist for those who have not given their lives to Christ).

So without going any deeper into the theology lesson (my theology class at the Bible college begins in January! lol :), the point here is that we know we're here for the lessons God wants to teach us.  I personally believe that the outcome is assured - thought that is not to say God isn't still in charge or can't change things around if we're not "getting it".  But we're trying hard to learn / absorb / be molded by all that He brings our way.  The greatest tragedy for a Christian going through a trial is NOT that we had to go through it - but if we go through it and don't learn anything ... don't allow God to shape us and teach us, and build our character through the midst of it.

If Hannaniah, Azariah, and Mishael (more commonly known as Shadrach, Meshach, and Abednego) had simply obeyed king Nebuchadnezzar, they could have avoided an absolutely awful trial. But then there would not have been a Daniel chapter 3 for us to read 2600 years later either. (Well OK, there would still be a 3rd chapter, but it would be about something else).  

So we continue to pray as best we can, and ask our prayer partners to join us this way also, not to pray for the trials to end before God's timing, but that we might get the most benefit out of them.  How awful it would be to go through all this and miss the lessons they were intended to teach us!!!

Ever so slowly, we are being changed in all this. We are learning to trust God; we are learning to "not sweat the small stuff", we are learning to trust that God really is in control of all things, at all times, in all ways. 

Our "near miss" this past Friday when Daniel & Andrea were in an auto accident was a good example of this.  They were driving north on our road and about to turn right into our drive way coming home from Daniel's chemo clinic appointment.  As she slowed (brake lights and turn signals all working and on), the driver behind her was both talking on the phone, and (he says) fishing for something in his pocket ... i.e. not watching the road.  By the time he looked up, Andrea was nearly stopped in front of him.  He swerved to the right shoulder and off the road narrowly avoiding rear-ending our car.  He'd have gone completely around her if she hadn't been turning into the driveway.  But as the car turned, he hit the right, front fender - just a couple feet in front of Daniel's door!  Damage was minor, no one was hurt, the car is still driveable, and it was clearly his fault.  I was really fearful that this would freak out Daniel - who always seems to be just a heartbeat away from succumbing to the constant stress in his life anyway.  But quite to the contrary, as Andrea wrote in her earlier entry, Daniel thought it was "really cool" to have been in "his first accident".  Really?  REALLY?!  Well, thank you Lord - I can't imagine any other source of that kind of reaction.  He enjoyed even more that the police officer that showed up was a K-9 unit and Daniel got to say hi to the dog and check out the SUV cruiser for awhile.

Further demonstrating that this was in God's hands from beginning to end, as they were pulling into the driveway in the first place, she was having to navigate around a delivery truck parked there.  For a week or two prior, my cousin in Tennessee had been emailing with me to arrange a gift to get to Daniel from a woman in her prayer group that had been praying for Daniel for some time.  She'd felt led to get Daniel a gift and we'd been going through the logistics of what kind of gift, shipping, timing, all that.  And both these completely unrelated chains of events came together in such a way that, one of the nicest gifts Daniel has ever received was there waiting for him to take his mind off this situation that COULD HAVE BEEN really bad within only split-second differences in timing or locations.  By the time I got home from work, they'd both forgotten completely about the accident and it's just been a non-issue for us entirely.  What an incredible "coincidence"! :-)  Of course not - God knew and has always known exactly what He was doing it and His timing is perfect in all things.  The more and the faster we all come to rely on that understanding, the better off and the better disciples we will be.

As always, thank you all for your continued prayers, thoughts, notes, comments, and gifts.  

I added a couple pictures to the CaringBridge album - one of the damage to the car, and the other of Daniel receiving his purple heart. For more pics of each, visit our Facebook Album at the links below.

Grace and Peace,

- Tim -

Accident damage Pics:  https://www.facebook.com/media/set/?set=a.10151256007479913.517334.665739912&type=1&l=71b484b088

Purple Heart Award Pics: https://www.facebook.com/media/set/?set=a.10151256015774913.517335.665739912&type=1&l=12e373849b 

Follow us on CaringBridge at http://www.caringbridge.org/visit/danieljmiller

A Second Battle for the Same Town

Mirror post at: http://www.caringbridge.org/visit/danieljmiller/journal

In World War-II, my Uncle Bob Slater was a member of the 94th Infantry Division, 302d, of Gen. George Patton's 3rd Army.  Shortly after the Battle of the Bulge ended, they were fighting hard in an area known as the Siegfied Line and every town was a really tough fight.  One town in particular I'm especially familiar with for reasons I'll come to later. It was the tiny town of Sinz near the German, France, Luxembourg borders.  It was a terrible battle and many men were killed, many more wounded during the fight.  But they took the town.

Within hours, they were informed that the armored company that had supported them was being detached (pulled out) for another engagement.  They knew they could not hold the town without the armor and had to retreat only to be faced with taking the exact same town again later ... at the expense of more lives of course.  They did take the town again and continued to push forward into Germany until the war was won only 4 months later.

Why do I go into all this on Daniel's page?  Because tomorrow (Wed 9/4/12) it feels like we're going into battle to take the same town for the second time.  Last week, we thought it would be the biggest of the battles we faced during this last intensive phase of his chemotherapy.  Unfortunately, because Daniel forgot he wasn't supposed to eat after midnight the night before, and his parents didn't realize the mistake, we had to postpone the worst part of the scheduled treatments ... the spinal tap.  Rather than pushing it back to late afternoon the same day, they just postponed the spinal a week since we were due to be back in the clinic anyway.  Even more unfortunately, this put the spinal on the same day as the first round of his shots piling up two of Daniel's most dreaded treatments.

If you've followed us through the beginning of this phase, you may recall that he had to endure six different treatments of 3 injections each, spaced 2 days apart.  I won't go back through the "whys" here, but suffice it to say, with Daniel's hatred of needles, he had a really tough time dealing with this treatment.  His other arch-nemesis is the spinal tap.  He has to be put under for this and recent experiences have left him much more nauseated and with a sore back than they did originally.  So while he was quite happy to postpone the spinal last week, here we are again staring at the same battle for the second time.  Only this time, we're also got a regular chemo IV plus the dreaded leg injections all piled together.  It's like taking the same town again, but this time they know we're coming!

He started struggling with anxiety on Sunday and had it even worse last night.  So far, some discussions about courage, spiritual armor, God's peace, and taking our thoughts "captive" have been able to turn things around for him. But I'm not looking forward to tonight as the evening wears on.

Tomorrow, if the battle goes as planned, we'll be through yet another spinal (only 23 more scheduled), another infusion of this drug (24 more scheduled), and the first of 6 sets of injections over the next week and a half (15 more injections).  It'll be a tough battle over the next 24 hours - in some ways, the actual procedures will be easier than the waiting period ahead of time.

I'm reminded of a line from the movie "The Lord Of The Rings" by the Hobbit named Pippin when he said, "I don't want to be in a battle, but waiting on the edge of one I can't escape is even worse."  I'm sure Daniel would agree!

I'm familiar with the first Battle for Sinz, on Jan 26th, 1945 because in it, my uncle Bob was mortally wounded, dying a week later at a field hospital.  It was tragic to learn that all the ground they'd won in the battle that claimed his life was lost again just a day later, yet ultimately I know his sacrifice was not in vain and the war was won. You can read a little bit about the battle here: http://www.angelfire.com/va2/worldwar2family/freddie4.html Scroll down to the entry titled: "SINZ: The Lynchpin". 

So too shall our war be won with Faith, Fortitude, Courage, and Perseverance.  Making advances against the enemy is never entirely in vain - even if we suffer the occasional set back.  It's not the ground we cover, it's the victories we win.  And if we win two victories for every loss on the same ground, we're still winning and still moving forward overall.

Thank you all for your continued prayers, support, and all the wonderful comments.  Rest assured we feel and appreciate every one (both prayers and comments ... but especially the prayers. :)  

For our prayer partners, the above text should provide plenty of prayer requests without my listing them again here.  Again ... THANK YOU. and may God bless each of you.

- Tim, Andrea, & Daniel -

Please also continue to pray for our friends The Kellers and their son Joey.  Read their updates here: http://www.caringbridge.org/visit/joeykeller

On the Eve of Battle

Mirroring our CaringBridge post: http://www.caringbridge.org/visit/danieljmiller/journal

As I write this, Daniel has just gotten to sleep after fighting it all night, not wanting to face the morning.  Yesterday evening was an even bigger battle as the weekend came to a close and he began to get caught up in anxiety about Tuesday's clinic appointment.  Our week-long hiatus is now over after his bout with the flu last weekend.  And tomorrow (Tues) morning will be our next try at starting the last major phase of treatment.  However, it is "count dependent" (his blood cell counts will have to be above a certain level in order to start the treatment).  

Personally, I'll be really surprised if they are high enough. He's still had a bad cough throughout the past week and Andrea has REALLY been down hard with it (exposing all of us to the same bug continually).  If Daniel's counts are high enough after this past week, it'll be a minor miracle in itself.  We're all of very mixed emotions about it.  We'd like to see him have a chance to rest more, but we also want to get moving and get this over with!

However, the blood counts are always a 50/50 shot and completely unpredictable - so who knows.  But once we hit that magic number, we'll be jumping off into what we HOPE is the last really major battle of this war.  There will be no more "count dependent" holds along the way and after this phase, we're into "maintenance" which is at least a LITTLE bit easier.  Of course, there is always the danger lurking of ongoing side effects, infections, or even a relapse. So we take nothing for granted.

When this last portion does start, it's going to be a tough 4 weeks for Daniel.  It will involve 3 spinal taps, 2 rounds of 4-day home chemo treatments, and another face-off with the 18 injections in his legs (6 days of 3-shots each spread over 1-1/2 weeks), plus several other IV infusions and oral chemo drugs along the way.  It's no wonder he's dreading it.  The huge numbers of needles he's seen over the past 8 months have done nothing to lessen his dread of them, and his battles with nausea have been increasing lately, and none of us are really sure which drugs or combinations of drugs cause that to happen yet.

In addition to staring this enemy in the face, he's now lost nearly all of his hair.  Andrea talked him into getting it cut short (a military cut), and while that is almost certainly a better way to go, it's also had the effect of making the little bit he has left appear almost unnoticeable.  It was already sparse and is so thin and light in color that it appears almost gone.  Closer examination does indeed show large bald spots, and only very thin patches left everywhere else.  It's bothering him a lot and had him in tears last night as he really wrestled with the fear of what lay ahead as he was going to bed.

If you've been following along, you'll note that we've been going through a new interest in WW-II things.  This began with a new video game for his Wii that I bought for him, but I've been capitalizing on it with other things as well.  Last night we finished watching the mini-series "Band of Brothers", and tonight we went through a bunch of the Special Features stuff in the DVD package.  I tried to capitalize on this as we talked last night and tonight.  I told him that anybody who knows ANYTHING about cancer or chemo therapy understands why your hair is falling out.  It's not something of shame, it's a testament to your courage and to all the difficulty you've been through to those who see you.  It is your "Medal of Honor" that you earned in battle and you should be proud of it, not ashamed of it or embarrassed by it.  I saw a tear roll down his cheek as I said these things and talked about using God's Word, Armor, and Weaponry that He's given us to "set up defensive perimeters around our hearts and minds" (Eph 6:10-18; Phil 4:6-7), and taking enemy thoughts that try to attack us as "prisoners" and sending them back to HQ (2 Cor 10:5).  I don't know what the tear meant and I didn't dig.  I talked to him about the "Peace that passes understanding" and "resisting" our enemy so that he would flee from us (Jas 4:7), and keeping our eyes peeled for the escape route that God provides for us (1 Cor 10:13) until his eyes grew heavy and he drifted off to sleep.  

Some time, I'll talk to him more about what's going on underneath it all and whether my words helped at all. But for right now, I'm calling in for long-range artillery support ... that would be YOU dear readers.  

I've described the precise coordinates of our various enemies on the battle map and need you to take aim at them and let them have it.  We're pinned down at the moment and looking forward to being relieved after this next big battle.  The name of the town before us is "Delayed Intensification Phase - Part B" and we may very well be assaulting it in the morning ... or the attack may be postponed until we get enough replacements to get back up to our full compliment (of blood cells) before going in.  Either way, our objective is clear and there's no going back.  The only way to victory is FORWARD!  And our Commanding Officer has never lost a battle, so we'll leave the decision making to Him. We'll follow Him anywhere!!

Please forgive the military tenor here, but one day he'll read this and (I hope) appreciate it. :-)  Until then, whether this is reaching Daniel or not, it's at least been helpful for me to see things in this way as it helps keep perspective.  There are a number of enemies facing us at this point.  Call them cancer, chemotherapy, hair loss, fear, finances, stress and emotional distress, and even Satan himself.  But we have weapons, training, support, artillery (prayer partners), and close air support (the angels of heaven) at our Captain's command (Matt 26:53), and if we can keep focused on just following orders, then this battle too WILL be won.

Thanks for your indulgence, and thanks especially for the artill .. er ... prayer support!!  Now let's get some suppressing fire on those enemy positions and soften 'em up good so we can take this hill in the morning!!

Strength, Courage, and Honor,

- Tim -

P.S.  Please also remember to keep Joey and the Kellers in your prayers as well.  Their battle has been FAR more intense than ours and they are in desperate need of a good Cavalry charge right about now. http://www.caringbridge.org/visit/joeykeller  

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 -

Not So "Fair" After All

The past two years, Daniel had to miss the Indiana State Fair because of his back problems (caused by compression fractures in his lower back from what turned out to be osteoporosis).  This year, despite the leukemia and being deep in the midst of chemotherapy, he was feeling pretty good when the fair came around, and his uncle Tom (no the other one) was generous enough to offer to pay his way.  The staff at Riley warned us to stay away from the animal barns due to the possibility of infection, but gave us the all-clear to go.  This bothered me a lot and I really didn't want him to go.  Personally, I have no use for the fair and couldn't care less about it, but both Andrea and Daniel absolutely love it and REALLY didn't want to miss it a third year in a row.  So in the end, I caved in and let them go (I worked most of the day and then tried to get some things done at home while they were both gone with the rest of my family.

It turned out to be a rotten day for me, but Andrea and Daniel had an absolute blast on all the rides.  Monday he was worn out & pretty tired, but otherwise seemed OK.  I kept my fingers crossed, but apparently not tight enough.  But Tuesday, he was complaining about lower back pain - far down a the very base of his spine and into his hips.  He was moving pretty slowly and not feeling that well by the time he got to his regular clinic appt. on Tuesday.  The only thing they did at clinic was to draw blood and look at his cell counts.  They had all dropped drastically from the week before. Not good news, but not unexpected with this phase of chemotherapy (at least it wasn't to the hospital staff. No one had bothered to tell us that this was expected. Grrr.

By that night though, his back was completely locked up and he was in terrible pain.  His prescription pain meds helped enough for him to get a little sleep and I slept beside him on an air mattress helping him through the night with going to bathroom, getting meds, drinks, etc.  It was a long night.  But he seemed to be doing better during the day on Wed. so we didn't call the doctor, but again on Wed night, it hit him hard - much harder even than Tuesday night and even the prescription meds weren't touching the pain.  He was struggling hard with depression and hating life. We talked for a long time, I gave him the maximum dose of his meds around 12:30, hit it with both ice and heat, and eventually around 2a he drifted off to sleep in our bed where he thought the mattress was more comfortable.

Thursday we called back to Riley and explained the situation and they brought us in for an exam and X-rays.  They were clear and the doc felt that it was really just a side effect of over-doing it at the fair on Sunday (now 4 days prior).  But he was also beginning to complain of slight hearing problems, joint pains, and some mild tremors.  The doctor and we chalked it up to the fair, the pain meds, and massive psychological overload. 

By Thursday night, he was feeling better (and some stronger pain meds were working well), but he was also running a low-grade fever.  REALLY not what I wanted to see!  Thursday night we both slept downstairs again and it was a relatively uneventful night except he continues to have trouble sleeping and is still constantly hungry as he comes down off the steroids.  But the fever was not going away. It was holding fairly steady between 100-101.  101 is the threshold at which we have to take him to the hospital regardless and ANY sign of infection in an immune-compromised cancer patient is considered a medical emergency.

If you've followed our story for long, you know we're no strangers to midnight trips to the ER with fevers.  But Daniel was certainly in no mood to head back to Riley again now with a fever.  But it topped 101 earlier today (Fri) and so off we went with Daniel EXTREMELY upset over these events.

When this happens, they do blood counts again, and also take "cultures" of his blood to see whether anything grows that would indicate a bacterial or viral infection.  And if his blood counts are below a certain number (and they were), he is automatically admitted to the hospital so they can observe him, pump him with antibiotics, and wait to see what the cultures do over the next 48hrs.  You can imagine his excitement at being told he was being admitted.

There was no room available in the usual 5th floor hematology/ Oncology (called "HemOnc") ward, so they found us a room in the Stem Cell ward next door.  Because there is a risk that he has an infection, we're in a private room.  That part is nice.  I came up after a long day at work to relieve Andrea and spend the night with Daniel. This is our usual routine for admissions as Andrea has a terrible time on the chair/beds provided for parents here in the rooms.  About the time I arrived, the doctor came in to do a nasal swab (insult to injury you know for poor Daniel) and we were told that they have already seen a few cases of a new strain of Swine Flu from kids who have attended local fairs - even those who didn't visit the animal barns.  Great.  Combined with the news from the Fair that they'd sent home all the piggies that day because they too were running fevers and the Fairgrounds didn't want to risk spreading infection among the pigs (yeah, what about us humans?) I was NOT a happy camper about having caved in and let him go in the first place.  This trip to the Fair is getting more expensive by the day for our poor Daniel.

The most recent "insult" was around 10:00 or so when the nurse came in and informed me that I will now have to wear full gown, mask, and gloves any time I'm in the room with Daniel.  I honestly thought he was kidding me, but that didn't last long.  New hospital policy, you know.  It's for the sake of the other kids on the ward and that part I very much DO get.  So as I sit here sweltering and trying to type with gown, mask, and gloves at 2am, I'm wondering whether I'll be getting any sleep at all.

But of far, FAR more concern to me is the possibility of Daniel actually having contracted something serious with his immune system so weakened.  In all honesty, it's been a real test of faith for me to stay strong about this and keep my eyes focused on the Prince of Peace.  Blood tests and nose swabs won't have results back for at least 24 and probably 48 hours.  His temp is down a little (99.8) but still not back  to normal.  His heart rate has remained elevated and even as he sleeps next to me is still reading 140. I don't like that either (below 100 is closer to normal).

So the next couple of days are going to be critical in seeing whether this is just a minor bug, or something more major.  Fighting a nasty flu bug is bad enough with a healthy immune system!  Obviously, we covet all the prayer we can get. 
   - For God to be glorified in all this and for His will to be done in our lives
   - For complete healing
   - For quick, clear test results
   - For us NOT to catch anything new here at the hospital
   - For no mistakes and good care here from doctors and nurses
   - For Daniel's mental state and perseverance
   - For Andrea and I to stay strong, healthy, and remain a positive example and provide wise counsel to Daniel
   - For us not to miss any opportunities we may have to witness or serve others while we're in the midst of this.

A HUGE thank you to all our friends and relatives who have been walking this path with us - whether in person or "virtually".  We covet, FEEL, and thank you for every prayer.

Ultimately, we rest in the knowledge that God keeps His promises.  "And we KNOW that all things work together for good to those who love God, to those who are the called according to His purpose." (Rom 8:28).  So we thank our loving Father in ALL circumstances ... including this one ... knowing that ultimately He will work this into a plan for His glory, for our good, and that will somehow benefit others.  We may not see that good yet in this life - you never know.  But when we consider what all this might look like to us in 100 or 1000 or even a million years from now - we can be absolutely certain that the "inconveniences" of this lifetime will be remembered only for the extent to which we allowed God to use them in our lives to shape our character (which of course we will take with us into eternity) or to bring Glory to Him.  We pray only that we will trust Him enough to lead us through these valleys in such a way as to maximize the benefit - whatever that may be - of these trials.

To God be the glory both now and forever.  He is always worthy.  We believe and trust in You Lord. Help us to believe and trust You more.

Grace and peace to all,

- Tim -

Mirrored on our CaringBridge site here: http://www.caringbridge.org/visit/danieljmiller/journal

Daniel & Joey

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

Daniel & Joey


It's been a good couple of weeks for the Millers.  We completed Daniel's last "planned" hospital admission and thereby, the last portion of the "Interim Maintenance" phase of chemotherapy near the end of June.  We had about a week and a half of "vacation" before the start of the next phase (called "Delayed Intensification") and so we quickly put together Daniel's 10-1/2 year birthday party.  A few years ago, we moved his party to the summer time so he could do more with his friends, take advantage of warm weather, and not be lost in the midst of the December holidays. 

This year, it was a bit harder to get planned and executed, but other than the short notice to friends and family, it went off very well.  We even had great weather and temps below 90 at the very end of the heat wave.  God is good.  Daniel came home with more LEGOs and having had lots of fun with his friends and cousins as Southeastway Park.  Many thanks to all who attended - in person or in spirit.


Tuesday, we were to start the Delayed Intensification phase - the last intensive phase before going into "Maintenance" which will last about 3 years.  Unfortunately, his white blood cell count was too low and we were sent home to wait another week.  In truth, none of us were too upset.  The good news is that, although it will push out the end of this phase, it won't push out the final completion date.  But at this point, that's so far down the road, it's hardly even worth thinking about.  We'll be glad to get through this last intensive phase that none of us have been looking forward to.

In general, Daniel's energy and appetite have been slowly recovering and having the extra week off is probably a good thing.  I've been pushing him to get more sunshine (which ironically has been more difficult with the searing heat wave we just came through), fresh air and exercise.  We're getting there gradually, but the months of inactivity have led to some bad habits of video games, TV, and lounging around indoors that are proving hard to break.  Andrea has gotten him out for some play-days and a swim day recently though that's been good for him ... mostly.

The mysterious white cell count continues to bounce around all over the place though, and is often frustratingly low.  It's an indicator of his immune system (but not his actual health).  The Riley staff tell us that it could be almost anything that causes it to remain low, but is likely due to minor bacterial or viral infections.  I believe this must be due to exposure to various bugs "going around" either through Andrea & I having been exposed and bringing them home, or directly from interactions with his friends.  Andrea and I can't do much about our own exposures, so it's really difficult to try to find a balance between wanting to let him play with his friends and my instinct to want to keep him in a "bubble".  I believe very strongly that the psychological side of our health is every bit as important as the physical side.  If he stays lonely and depressed, I feel he's likely to remain more "sickly" than being able to laugh and run and play even if it means exposure to more infectious agents.  It's difficult to find the balance and the disagreements between Andrea and I have at times been rather unpleasant.  We're working through it and trying to find the best ways to communicate and find agreement in the day-to-day decisions and activities.

Unfortunately, Andrea's health has been quite a roller-coaster ride recently as well.  She's been knocked completely out of commission several times lately and has a lot of trouble just finding the energy (much less enthusiasm) to even get out of bed in the morning.  Her courage, character, (and Facebook) keep her going though. :-)  It does make it more challenging for me to try to keep up with work as well as the household chores.  Cleaning in particular is something I need to do a lot better at keeping up with for both Daniel's and Andrea's sakes.  Seeing his persistently low blood count numbers and her constant battles with various bugs really drive this home.


When Daniel and I showed up at Clinic on Tuesday, we were happily surprised to have Joey and Elizabeth Keller join us in the waiting room.  Daniel & Joey got to spend a few brief minutes linking their Nintendo DSes together to play Super Mario Cart (or something like that) while Eliz and I talked about our respective challenges.  Unfortunately, theirs currently dwarf anything I can even imagine much less relate to.


We were able to attend Joey's 9th birthday party this past Saturday and here is a link to some pics from the party on Facebook: https://www.facebook.com/media/set/?set=a.3604906886693.2126038.1394270143&type=3


We feel very close to the Kellers and, though only in a very small way, can relate to some of what they're going through.  They're amazing people and we love them to pieces.  So I was in tears this morning reading Nick's latest post about what Joey is going through.
http://www.caringbridge.org/visit/joeykeller/
Please, please pray for Joey, Nick, and Elizabeth as they stare this dragon in the face and march forward in faith with sword in hand.  Scripture assures us that God's desire is ALWAYS for us to be whole, healthy, and free from sickness and death.  I am absolutely confident in this. This is NOT what we were designed for, and God grieves alongside us through all our trials and tribulations.  We don't always understand what sometimes prevents God from healing us, but we do know that PRAYER changes things.  We also know that ALL things work together for good for the Called.


Please join with us - frequently - as often as you can - in persistently PESTERING God about healing Joey and delivering him from this awful cancer (Luke 11:8; 18:5).  Yes, this is actually what He wants us to do!  (Read the two passages if you haven't made this amazing discovery.)  Pray for Joey to be completely healed. Pray every time you think of it, and think of it often.  Pray specifically that every cancer cell and every form of cancer cell in his body would be destroyed, and that all damage would be healed restoring him to complete health.  Also pray for the protection, peace, endurance, patience, and faith of all three of them.  This is a long and difficult race for them, strewn with pitfalls and robbers along the way.  They are amazing people, and Joey is an absolutely amazing, faith-filled, brilliant and insightful little boy.  I have been learning from all three of them regularly as we watch them fight this battle.  We seek to help them "hold their arms up", in any way we can and hope you can join "TEAM JOEY" alongside us as well.

Grace and peace,

- Tim -

Final Hospital Admission?

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

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

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

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

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

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

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

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

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

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

Grace and peace.