A Long Awaited Day

Tomorrow, Tuesday, March 23, 2015 marks one of the most important, and long-awaited milestones in this long, long journey of cancer and chemotherapy with our son Daniel.  Though it's not exactly the end (more on that in a moment), it marks the LAST , God willing) chemo infusion treatment in his treatment protocol and therefore, the end of the most stressful aspect of the journey for him (and us in many ways).

We're due to be at the hospital by 6 am (uggh!) to get the registration and prep started for a surgery scheduled at 8:30 to remove his "port".  After registration, we'll head to the Hematology/Oncology (HemOnc) clinic for the last round of IV chemo drugs around 7:30a, and then off to surgery to have the port removed.

We'd very much appreciate your prayers for us tonight and tomorrow as we approach this last big hurdle.

This ridiculously long, convoluted, and difficult health journey with Daniel started over 5 years ago when he began to have acute and debilitating back pain issues. Ultimately it was discovered that he'd broken his spine in multiple places due to juvenile osteoporosis - something extremely rare in children and which we went through multiple doctors and many months before even getting a diagnosis at Riley.  Incidentally, that diagnosis was obtained in roughly 5 minutes once we got to the right doctor!

But as we were seeing success with the osteoporosis treatments in the Fall of 2011, he began to have other symptoms that weren't related to the osteoporosis and which he had a really hard time getting anyone to take seriously.  Without rehashing all that, it turned out to be leukemia as we discovered on Jan 6, 2012 - also due to finding the right doctor at Riley.  If you're interested you can read the beginning of this journey at my first post here.

I will always wonder whether it was the huge doses of x-rays and other testing he received during the early days of the osteoporosis that actually gave him the leukemia.  Radiation - particularly X-rays, are a known cause of leukemia, which is a cancer of the blood (bone marrow specifically).  However, so are certain pesticides and our yearly inundation with them from the farm fields to the west of us have had us wondering about that too - which might also explain why Andrea came down with a slightly different variety of leukemia just a couple years before.

Regardless of the cause, it's been a wild ride of pain, suffering, fear, and heart-ache ... each of which our wonderful God has powerfully outshone with His grace, love, joy, blessing, protection, and calls to faith.  Many of these have come to us directly via His "Wonderful Counselor" residing within us, and many other instances of each have come through the Body of Christ as our brothers and sisters have gathered around us and helped us bear these burdens.

Examples like this one  illustrate just a bit of the many and amazing ways the Lord has shown Himself far bigger than any situation we have or ever could face. The outpouring of love and grace from friends, family, and the Lord Himself have made this journey an amazing one.  I won't say I wouldn't wish for it to be any different ... I do.  I would MUCH rather this never happened.  Maybe someday I'll have enough faith to think differently, but I at this point, I could never bring myself to wish this journey upon any child or parent - and far more so the journeys of those that have been so very much harder than ours ... of which we've personally known several along the way.

Yet now, barring a relapse, God forbid, we have come to the last IV infusion of these wonderful / horrible drugs.  If you've read any of my blog on this subject, you know I have a love-hate relationship with these chemo drugs.  I refuse to call them "medicine", and yet I'm also confident they are the reason I still have a family.  It is almost a "miracle" of medicine that these drugs exist and are able to do what they do.  Not long ago, this disease was a death sentence, plain and simple.  I just desperately wish we were farther along than we are as they are incredibly costly - and the financial expense is the least of what I mean!

On the very first day of chemo treatment, Daniel underwent surgery to install a "port" in his chest.  Basically, they knew he would be stuck with needles so many times over the next 3 years that it would destroy his normal access veins.  So they installed a kind of pin-cushion in this chest that can take all the needles, is easier to access, and provides a direct line into his blood stream.  Tomorrow, after the last IV treatment, the port comes out.  It's a bit of a mixed blessing because he'll still be back every month for a blood test which will now have to come from his arm.  But they feel the port has risks (infection) associated with it and is no longer worth it once the chemo protocol is finished.

For the past 2-1/2 years or so, he's been in what they call "maintenance" phase which consists of

1. Daily oral chemo drugs
2. IV infusion once a month
3. Spinal tap & injection every 3 months (it was every month or more for the first couple years)

The last spinal took place last month (Feb).  Tomorrow is the last IV infusion.  Technically, he's still on the oral drugs until his appointment in April.  That will truly be the last day.  But the oral drugs are not nearly as hard on him as the one he gets injected with each month (called Vincristine) - so THIS is really the big day!

Next month, at his first check-up appointment, it will be the last day of the oral chemo drugs as well and he will officially "Ring The BELL!"  (There is a rather loud and very special bell at the HemOnc clinic that every patient gets to ring when they end their treatment.  As you might imagine, it's a VERY special day!)  But for Daniel, for the side effects, for his health, and most especially for his own stress level - tomorrow is the biggest milestone and the (virtual) end of a very long and difficult journey.

We are so very thankful to all of you who have come alongside us in any capacity along the way.  Some have been involved with projects around the house, transportation, meals, finances, and many other "hands-on" helps.  And while we are eternally grateful for all the things that everyone has done and continues to do for us, what we have been most grateful for is the innumerable prayers that you have sent up before the throne on our behalf. It's impossible to describe (though I've tried hard) what it's like to go through this with your child and your spouse.  But it's even more indescribable to convey the sense of comfort, security, even joy that just having someone say, "praying".  There have quite literally been thousands of such notes along the way in every format imaginable from person-2-person, to Facebook, this blog, CaringBridge, email, texts, and others.  We've been very "connected" through this process and I'm convinced it would have been a very different journey for us without that "connectedness" from all the different forms of media.  Andrea and I have said on many occasions that we don't understand those who hide their trials from their friends and even family, but we do understand that everyone deals with adversity differently.  We can only state that these forms of media have been an incredible blessing to us in many, many ways.  Those of you who helped us, prayed for us, or even just thought about us ... THANK YOU.  Those of you who let us know with even so simple a thing as a text or a comment as "praying" ... THANK YOU!

We're still trying to figure out exactly how to celebrate this event.  Daniel wants me to buy him a video game console in celebration.  Let's just say that won't be happening any time soon.

Grace and Peace to all,

- Tim -

Update on Andrea's Neck Pain

As many of you know from following us on Facebook yesterday, we had a little crisis with Andrea having really severe neck pain.  She had mentioned to me a day earlier that it was really stiff and she thought she'd "slept on it wrong", but apparently it was something that had been building for awhile unbeknownst to me.

Yesterday, it launched to crisis level when she woke up screaming in pain (literally, she tells me, though I was already gone to work).  She said she was glad Daniel had been staying at a cousin's house because she was screaming and crying all morning trying to get dressed, feed the dogs, and get a hold of me.  I'd already been at work a few hours by the time she let me know what was going on.  I left immediately and got home to her, applied heat, did some light massage to the neck and shoulders, and called her oncologist to get permission to give her some prescription pain reliever we had for Daniel.

Within an hour things were a bit better and we discussed options eventually settling on the ER at Hancock Regional (Greenfield) hospital - mostly because they're so much less crowded. Sure enough, there was no wait at all.

As a friend of mine predicted though, the ER did nothing but treat the symptoms and refer us back to our family doctor (which is another story, perhaps for another time).  As they treated her and discussed what they wanted to do, I was repeatedly reminding them about Andrea's chemotherapy medications and how she's extremely limited on what other meds she can take because of interactions with it.  Both the doctor and primary nurse were visibly annoyed with me (which is normal by the way), but at least twice, I saw them change what they were doing or planning because they'd forgotten to take that into account even though I'd already told them.  Very frustrating, but again - quite normal.  This is exactly why I annoy the heck out of them constantly bird-dogging them and insisting they tell me everything they're doing.

After giving her an injection of an anti-inflammatory drug, the doctor prescribed two high-strength pain relievers and a muscle relaxer - again - after my repeated warnings that they needed to closely evaluate interactions with her chemotherapy meds.  So as soon as I got Andrea back home, I called the oncologist to run these drugs by them and as I expected, 2 of the 3 prescriptions were rejected.  We ended up settling on a different set of meds which we hope will help a lot today - we'll see when she gets up and moving this morning.

I was able to get 6-1/2hrs in at work after all, but didn't get home till nearly 9:30. By then Andrea was doing pretty well though.  Unfortunately, we're kind of "between" family doctors right now, so we'll need to decide who to see about getting to a root cause with this.  For those who asked about a chiropractor, we almost certainly will not be going that route.  After a couple dozen years of combined experience between Andrea & I and a fair amount of my own research, I put very little faith in chiropractors any more.  Notice I did not say "no faith".  I'm convinced there's still a "baby" in all that "bath water" - and I remain open ... a little ... but the next time I hear the word "subluxation" or am told we'll need a full set of X-rays, I may actually scream! :-)

I know I owe everyone a major update on both Andrea and especially Daniel regarding the cancer and our recent trip to Orlando.  I promise, I'll get them out soon.

As always, we're extremely thankful to everyone for the prayers - by far the BEST treatment for any illness!

Grace and Peace to all;

- Tim -

A Prayer for Joey

Gracious and loving Heavenly Father, we come to you now in supplication for Joseph Keller and his family. Please lead us now in this time of prayer and hear the cry of our hearts.

We thank you for bringing the Kellers into our lives and for the privilege of being a part of all you have done and continue do in and through Joey, Nick and Elizabeth.  We praise You how deeply and graciously You have touched and sustained them through this most difficult trial.  We worship and adore You as Creator and Sustainer of all life and all living things.  We honor you as Creator of the Universe and Master of all.  You, and You alone, define love, grace, goodness, mercy, and joy, and we look to You now on behalf of Joey, Nicolas, and Elizabeth in this hour of desperate need.  You formed Joey from the beginning of his conception and indeed knew him from before time itself was created or the foundations of the world were laid.  And his life and Your plans for his life are before you at all times.  We have seen Your hand at work in his life on so many occasions to keep him from the jaws of untimely death and to heal the damage to his body from diseases and treatments.  We thank You and praise You and worship You for your mercy and grace to this point.

We now ask You to touch Joey again with Your power and bring release from disease and suffering, restoration to health, and regeneration within his body to strength and long life.  And we believe completely that this is Your will for him as we have seen You move in this same way so many times before.

You have granted to us who believe, access to the awesome and powerful name of Jesus and You have commanded us to use it in battle against our enemy and his kingdom as well as against sickness and disease. And so it is in the mighty name of Jesus and by the power of His shed blood that I come against Satan now on behalf of the Kellers.  I command any and all foul and unclean spirits to immediately cease and desist all activity regarding Joey Keller, his parents Nick and Elizabeth, his doctors, nurses, and any other hospital staff, family, and visitors associated with his case and care.  You are commanded to be gone from the Keller's room along with any backups, replacements, or other such beings or devices of your use or influence and to have no further contact or influence upon these people, or the equipment, facilities, or processes associated with Joey's case and care.  I tear down and destroy any strongholds, footholds, attachments, or links that may exist to these people and objects and declare that you are forbidden to return or have any further contact or influence with any of the people, objects, places, or processes I have named.  In the name of our Lord God and Savior - Yeshua HaMashiach, get out and stay out.

Father, I ask for you to fill that hospital room, and indeed the entire ward, with your presence, power, glory, majesty, light, love, peace, and healing energy.  I ask that your Holy Spirit would descend upon that room and all those present and all who enter it.  Surround, fill, and permeate every part Joey's, Nick's, and Elizabeth's beings with Your supernatural peace, comfort, hope, trust, and faith.  Envelop them in Your love and light and holiness and cause them to rest in the knowledge and faith of Your control and Your promise to work ALL things - even THIS trial - into a pattern for good for them.

Please set your hedge of protection round about Joey's bed, about the room, and about the entire ward and post your angelic guard to the north, south, east, and west, from the floor beneath to the roof above, and at ever access point that no creature would be allowed to enter except they be about Your business.

Let your presence fill their hearts, minds, and the very atmosphere of their room with a dramatic and powerful Peace, Hope, Reassurance, Comfort, and JOY that comes from knowing You and the perfect confidence that You are in control and that You will cause all things to work out for good and in Your perfect plan for Joey and all those involved.

Father, I pray as specifically as I know how for Joey and his current afflictions.  In his body, I pray against every form of sickness, disease, infirmity, and malady.  I pray specifically against cancer - in all its forms and causes, and against the seizures he's been having - in all their forms and causes.  I ask that You would destroy every last trace of cancer, malignancy, and mutation currently in his body - in every system, in every organ, in every tissue, in every cell, in every gene, in every protein, in ever enzyme and amino acid - down to every last molecule of his being.  Destroy every malignant, mutated, or out-of-place molecule or cell and prevent them from reproducing.  Cause his own immune system to be restored and to recognize and attack and destroy every malformed molecule and cell and to rebuild and strengthen its own ability to protect him.  Cause all tissue and cellular damage to be repaired immediately or replaced with good cells and tissues.  Bring all chemical and physiological processes back into balance and proper functioning.

I pray for the other aspects of Joey's being to be healed, restored, and strengthened as well - his heart, mind, soul, and spirit.  Renew, restore, rejuvenate and regenerate  all aspects of his being and their dependencies and interactions in both the physical and non-physical realms.  Bring Joey back to complete health, vigor, strength, and life in every way he has need.

I pray too for his parents Nick and Elizabeth.  Descend up on them both in power. Open their eyes and ears to Your presence and Your work.  Fill them and guard their minds with the Peace of Jesus and remove all fear and doubt.  Give them rest - physically, emotionally, intellectually, and spiritually ... cause them to rest in You and renew, restore, rejuvenate, and regenerate them in their hearts, minds, souls, and spirits.  Draw them to a confidence in Your power, providence, and will and willingness to heal their little boy and let it bring them to a point of rest and peace in You.  Give them wisdom and courage to stand firm in their faith, and to make good decisions and right actions on behalf of Joey and all the other burdens and responsibilities they bear.  We ask also for your mercy and grace where Nick's job is concerned that his employer would be gracious and as accommodating as possible to the family through this trial.

I pray that You would continue to raise up family, friends, and other Christians to support, encourage, and share in carrying the burdens the Kellers bear during this time as well.  Whether through finances, food, caring for the house, or any other way that the Body of Christ can find to bless and support and encourage them.  But most of all, I pray that Your Holy Spirit would continue to go forth raising up even more who would pray, intercede, and fast on behalf of Joey and his family.  Place Your burden for prayer upon the hearts of those whom You would call to help and work alongside the Kellers.  Do not let Your people hear the story of Joey and walk away unburdened for intercession.  Work through these events in the lives of those who have been touched by this trial to make us better, more disciplined prayer warriors and intercessors, more other-centered, and more faithful.  Draw people unto Yourself through these events and let us all come away with a deeper relationship to You, and a deeper understanding and commitment to prayer in general.

Most of all Father, I pray that all these things would not be in vain; that there would come from these events the greatest possible good for all those involved, but most especially for You and Your kingdom.  May all the lessons available to be learned here - whether in Joey, his parents, the doctors and medical staff, the prayer team, or the casual passersby - be learned and learned well.  May each person come away changed by these events in a way that ultimately brings glory to You and draws more people to You and deeper in their walk with You and Your Word.  Let no lesson be lost.

Hear our prayer Father.  Show Thyself strong and loving and gracious - as Master over all life and death and sickness and infirmity.  Glorify Thy name before men and especially among those who would deny You or place their trust and hope in the wisdom and acts of Man rather than You.

We love You and thank You and worship You and glorify Thy mighty and holy name before all men and before the hosts of heaven.  For You alone are worthy to receive all glory and honor and power and praise.  Your's is the kingdom and glory and the power forever.

All these things we ask in the name that is above all names - the glorious, powerful, wonderful, precious name of Jesus.

Amen.

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 -

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

Too Much Too Soon

We're back from Riley now.  X-rays showed no obvious fractures to the vertebrae.  Doctor Hill thinks this is a result of over doing it at the Fair on Sunday - I wasn't at all happy about him going to the fair, but in the end I relented because he'd wanted to so badly & missed the last 2 years with back problems.  Did I make the wrong choice?  I'm honestly not sure. The fun that he had with his cousins & grandparents may well have been worth this price to him.  It will be interesting to see what Daniel thinks after this is all over.  Strangely, my apprehension had more to do with him catching some infection while there. Another back injury never crossed my mind.  

I can't remember a single time I ever ended up being glad I didn't go with my intuition. I'm usually pretty good at listening to it, but I gave in this time.  One of these days I'll learn.  :(  (And BTW, for those of you thinking about this, there's a distinct difference between what I hear as my "gut" / "intuition" and hearing God speaking. I'm not completely clear as to the relationship between the two, but would lean more toward there being a connection than not.  But that's a discussion for another time. 

The doctor indicated that the steroids he's been on (just finished the current round) could well have added to the situation.  We also know that one of the other chemo drugs has some strange side-effects that could have contributed as well.  I asked him specifically about the possibility of a new CNS issue (cancer in the spinal column) and he was able to put my fears to rest ... whew!  That's what had me bordering on panic the last 24hrs, so good to know this doesn't look anything like that.

So for now, we've got some better pain meds and orders for rest and heating pads for the next several days.  Thanks to all who prayed for us the past couple days.  Please keep them coming for quick healing and especially for his mental state.  All this has been VERY hard on him psychologically and he goes in and out of some fairly serious depression.  That may be the worse problem he's actually facing right now.  Please pray for wisdom and discernment on our part as we deal with that aspect.

Thanks again for all you all do for us and for standing with us in this fight.

- Tim, Andrea, & Daniel -

Mirrored on our Caring Bridge site at: http://www.caringbridge.org/visit/danieljmiller/journal 

A Mixed Bag

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


After a week's delay to the start of our last intensive phase (next comes "maintenance"), today Daniel's blood counts were high enough to start the "Delayed Intensification" phase.  We've been looking forward to this one with mixed emotions.  It has all the promise of indeed being intense, but we're also looking forward to getting to the other end of it.  There will be nothing easy about the next 3 years, but it will definitely be better than what we're facing for the next 2 months.

Today started with the "good" news of decent blood counts and being able to start phase IV, but has pretty much gone downhill from there.  Forgive me if this sounds like "venting", but that's what it is. It's been a tough day and I feel like sharing.  Sorry to make you the beneficiaries, but think of it as a rolling prayer request. ha ha.

As I write this, Daniel has thrown up all his dinner and is now fighting the dry heaves.  I think it's the extra heavy does of anesthetic he got, but not really sure.  Could also be any of the three chemo drugs he got along with it.

During the spinal tap procedure they had trouble getting him completely "out".  This has happened before and they just keep pumping the anesthesia into him until he goes out.  But once he was finally out (the procedure itself went fairly smoothly) his heart rate & blood pressure dropped dangerously low.  There was some concern for awhile, but he came back on his own and other than a little nausea, was doing fine and filling me in on all the components he needed to get in "Monster Hunter" (his favorite Wii game) to get to the next level.

I had gone into work this morning and was waiting for confirmation that his blood counts were a "go" before leaving for the hospital.  Unfortunately, they were WAY late in getting the blood drawn and by the time I got word that we were g2g - I had to FLY down to the hospital to get there in time.  By the time I got there, he was already in the O.R., prepped, and ready to go.  He was upset and nervous as usual and his pulse was already passing 100.  I took over from mom with a back & neck massage and started a conversation about Monster Hunter and we got it back down to the low 80s before the doctor arrived.  I prayed through most of the procedure (since, if you recall from previous posts, the only time I can't watch a medical procedure is when it's this doctor and my son.)  But other than a little trouble getting him "out", it went well this time (the doc's getting better! :)

Afterward, in the recovery room, we had the tense moments about the low B.P. and then Daniel was complaining of being cold.  We were informed that the knob had broken off the thermostat and the vent was directly over the bed. (Great engineering guys - NOT.)  

As Daniel continued to wake up, I had a fairly long conversation with the doctor expressing my growing frustration at not getting any traction on his continued lack of growth.  I think she finally "understood" me when I used the word "unacceptable".  But we'll see.  In fairness, this doctor is somewhat caught in the middle between me and the other doctors who are the ones that need to be looking at these other issues.  As the oncologist, what I'm after is not her specialty, yet she is the one through whom everything has to go.  Anyway, we'll see how this plays out.  I realize nothing is going to happen physically until we're through this intensive phase, but what I'm not happy with is that there is no discussion, no plan, no ownership, and no "next step" in place.  Is that the engineer, the project manager, or the DAD in me coming out?  Doesn't really matter - they're stuck with me.

As we prepared to leave, we go the low-down on what the rest of this phase will look like.  Unfortunately, one of the primary drugs they'd wanted to give him ("Pegallated Aspariginase") turns out to give him a fairly severe allergic reaction.  They tried twice and then gave up a couple months ago.  So the "plan B" is a different drug that has to be given 6 times (on 6 different days) for each single dose the Peg-Asp. would have been given.  This means we're heading back to Riley every other day for a week and a half each time.  

Hmmm. Didn't know that.  

We also found out, it can't be administered through his port.  It has to be given my intramuscular injection - in the thigh.  

Hmmm. Didn't know that.  

Depending on the dosage he'll receive (which they didn't have yet today), they may have to give half of it in two different locations ... one in each leg ... every other day ... for a week and a half ... and they HURT.

Hmmm. Didn't know that.

Daniel REALLY doesn't do well with needles (yes, even after all he's been through).  As they were describing to us where to apply the Lidocane (a topical anesthetic cream) before he comes in, he caught on.  We played it way down talking about how much smaller injection needles are than the blood-draw and access needles he's used to.  I think we made some progress there. But the fact that these injections will make the muscle hurt didn't come up.  That's going to be a big problem ... especially as they keep injecting into the same area every other day.  This will be rough ... very rough.

My mood was going downhill fast this afternoon.  As we left, we stopped by the pharmacy downstairs where the doctor had called in a prescription about 45 min earlier, only to be informed it would be another 30-45 minutes.  Great.

As we sat there waiting, Andrea and I were talking about some financial issues predicated by our Family Doctor that I won't go into except to say that it didn't do my deteriorating mood any good at all.  I left Andrea & Daniel in the pharmacy waiting area and headed back to work since we'd driven separately.  The rest of the day at work didn't go much better, but at least I got 7 hours in.  How productive they were was another matter as my head was in a million other places.

As I left work, I found myself at the tail end of the thunderstorm that blew through minutes earlier.  REALLY need the rain - but did it have to be right when I wanted to drive home ... and in the same direction.  I know - gift horses and all that.  As I pulled in the drive way, I was accosted by the pesky little neighbor girl who was adamant that she needed to come in the house with me - if not to play with Daniel (whom I told her was not feeling well), then to be allowed to cook the can of soup she was carrying around in our microwave.  What?!  So I got this convoluted story about how they don't have a microwave, and couldn't find the cord to the hot plate, and the stove costs too much money, and ... Um no; not playing this game.  You'll have to have your parents get you something to eat.  I'll have to find out what all that was about another time, but not tonight.

Since I got home, Daniel has been getting more and more nauseated until he finally lost all his dinner and now is fighting the dry heaves.  I can't even get an anti-nausea pill into him for fear it'll just come right back up.  He feels miserable.  The good news is that this has been a very rare thing for him to get this sick.  The bad news is that he's this sick.  He's supposed to start another oral chemo drug tonight, but I'm obviously not giving it to him in this condition.  He's had enough for one day, and it can wait an extra day.

Andrea has been through the ringer these past few days (actually, I could just as easily insert "weeks", "months" or "years" there too) as well.  We think she's had a stomach bug and the family doctor she visited yesterday thought the same thing.  She'd done a sleep study a couple weeks ago and this visit was supposed to be reviewing the results, but they didn't seem to notice that they hadn't yet received them from the hospital yet. So despite frantic, last-minute calls, that didn't happen.  So now there will be another office visit once the results are in.  They'll no-doubt prescribe another several pills for her to start taking that won't be covered by insurance and will add to the hand-full she takes every day as it is.  I think I'll be attending that next meeting as well if at all possible.  Hope I don't need to start looking for another family doctor again, but I won't hesitate if I think things are not going in the right direction.

OK, I'm going to stop there.  My apologies if you've made it this far.  I feel better. LOL. :)  The truth is, we have an ENORMOUS amount to be thankful for that we DO know about, and way more than we could dream of that we don't know about, but Scripture promises.  I have a wonderful family and we're together this day and the future looks bright - next month, next year, and 1000 years from now.  We have much goodness to look forward too.  We knew this phase was going to be a mountain that needed climbing.  It's height and ruggedness came a little more into view today, but it will just be that much sweeter to be on the other side of it WHEN we get there ... and we will.

Lord please let us learn ALL that you have planned for us in these coming days - don't let any single second of difficulty or pain or struggle be lost for the good that You desire to bring from it.  We cling desperately to your promise that A.L.L.(*) things work together into a pattern for good ... (Rom 8:28)  Thank you.  Thank you for everything about today. Thank you for loving us and being here beside us every step of the way and for keeping our eyes on the far horizon.  Teach us to trust, teach us to love, teach us to enjoy "life in every breath."

Amen!  Thanks to everyone who is also running this race alongside us or cheering or handing us a water bottle on the way by.  We love you and appreciate every one of you.  Please keep your prayers coming - they are by FAR what we value and covet the most.  

Please also remember to pray for Joey, Nick, and Elizabeth Keller as often as possible.

I'm off to set up the air mattress beside Daniel's bed for the night.  

Grace and Peace,

- Tim -

A 3rd Try for Treatment Tomorrow

We're preparing tonight for the 3rd attempt at getting Daniel into the hospital for his next round of chemotherapy tomorrow morning.  This phase is dependent on his white blood cell counts being above a certain level before they'll give him the treatment. The past 2 times, they haven't been high enough (in fact last time was the lowest they'd been in awhile).  He's been very active lately and being around a lot more people that I'm comfortable with (any exposure to germs can drop his counts further as he's much more susceptible to infections now) - but that's also really been good for his morale and getting some badly-needed exercise and sunshine.  So it's a mixed bag and I've been a lot more "lenient" on letting him do things because I know the psychological side (as well as the exercise itself) may well outweigh the risk of keeping him protected.  But as you might imagine, with what's at stake here, I tend to be a little over-protective of our "only begotten son"!

Tomorrow, we'll find out whether I've been too lenient.  It's rather ironic that "good news" in this case will result in admission to the hospital, a spinal tap, and a 24-hr dose of extremely toxic drugs into him that warrant 24hr surveillance until they're completely eliminated from his body.  But at this point, we just want to get through this - and even more so - the next phase.  The next one is actually the one that worries me the most.  It's referred to as "delayed intensification" and as the name implies, it's another very intensive 2-months of chemo.  His hair has been starting to come back in, his energy is up, he's slowly rebuilding some strength and stamina, but that phase is very likely to knock him back down several rungs again.  He's been unusually lucky (ahem) thus far to have not lost all his hair.  I believe it's a direct answer to prayer ... one of those "little things" that God has been pleased to grant him through this trial.  That was a big deal for him, and he's been really happy to have not had to shave it completely.  But we're warned that the next phase may break our "streak" and result in him losing what he has left.  We'll see ... and continue to pray for that little blessing to continue.

Through it all, God has been wonderful to us.  We've had every need met, been surrounded by the best doctors, friends, and family, and been learning a lot about trusting God with the big things as well as the small things.  Yet despite how well things appear to be going right now, it's never far from out minds how quickly it could all turn south.  Through this experience, we've been surrounded by so many, MANY others who are traveling similar roads.  Many we've met cause us to realize just how blessed and how "easy" our road has been thus far.  I've learned a LOT about strength, sacrifice, endurance, the need and power of prayer, and the value of Christian community.  Most of what I've learned is how far short I fall in these areas compared to the amazing people that God has brought into our lives.  It is my fervent prayer that all of us will forever be changed by these lessons and that they will ever be as fresh as they are now.

Those who have come alongside us during this time - helping with projects at the house, preparing meals, helping Andrea with cleaning, shopping, helping us financially with house renovations and medical bills, watching Daniel, even staying with him over night at the hospital so that Andrea and I could get some much needed rest - the generosity and self-sacrifice of so many around has been staggering ... unimaginable.  We will NEVER be able to fully express our appreciation to those who have helped in these and so many other ways.  And as I've said so many times before, with total honesty, the help that I covet the most from people is not with finances, or swinging hammers, or watching Daniel (though again, we're incredibly grateful for all these), but rather with prayer.  I can tell you with absolute certainty that, during those sudden trips to the emergency room at 2am, or bad news from the doctors hitting us like a freight train, there's no amount of money that can hold a candle to 20 or 30 people commenting on a Facebook post that they are praying and have their family or churches praying for us too.  We can feel those prayers like a warm blanket around us as the Holy Spirit draws us close and reminds us that He is in control and that those prayers go up before Him like a "sweet aroma" petitioning for the life and health of our son and our family.

Thank you.  Deep, heart-felt, eternal, and profound thanks to each one of you who have been a part of our journey through some sacrifice of your own - even just a minute or two in prayer.  Thank you, and may our Lord multiply your generosity back to you many-fold and many times.

For those who ask for our prayer requests they are few and simple right now:
1) That IF it be the Lord's will and timing tomorrow, that Daniel's blood counts will allow us to move forward with his treatment in the morning,
2) That it will go well - no mistakes, no adverse reactions or side effects, etc.,
3) That the drug will do it's job and be eliminated from his body quickly so we can all go back home, ultimately, moving always toward complete healing and health,
4) That we will be a witness for our loving Father and continue to grow and learn through all this - especially Daniel, and as always,
5) That God would be glorified in all this.

Grace and peace to you all,

- Tim -

Delayed Again. :(

Just a quick update to say that Daniel's blood counts were again too low to admit him for the scheduled chemotherapy this weekend.  So they're heading home.  Very frustrating.  He's quite happy, but obviously we're not avoiding anything. We'll still have to go through it all, just dragging it out farther into the Fall & Winter with each delay.

News Flash: God Answers Prayer!

News Flash: God Answers Prayer!   (Reposted from CaringBridge.com

Within a half an hour of the request going out for prayer last night, Daniel's rapidly rising temperature plateaued and started back down.  By midnight it was down under 100 and this morning it was back to normal (probably much earlier, but this was the first we heard).  Thank you all for your prayers last night (and all along). 

I was marveling marveling last night at how the technology of modern "social networking" such as this site, Facebook and others, have made it possible, not just to send out prayer requests, but to get nearly immediate feedback from people around the world that are lifting up our requests for Daniel.  How wonderful for the 3 of us, late on a Sunday night, sitting in a hospital room trying not to worry about a rising temperature and starting to think through the logistics of an even longer hospital stay - to get replies from no less than 8 people in the first 15 minutes or so that they were standing with us in prayer over the situation.  Unless you've experienced that , you might not appreciate just how much that means or how much we've come to depend on those little "likes", comments, Guest Book Entries, text and email messages, etc.  Each one is a comfort and encouragement to us in those darker times when we find ourselves reaching out to the Lord and the Body again ... and again, and again.  Thank you all.

At the same time though, it's important for us, to keep the focus in the right place.  I found myself initially titling this entry as "Prayer Works" - but a little flag rose up in the back of my mind about an old pet peeve of mine - that people attribute power directly to prayer itself.  Prayer has no power of it's own.  Prayer doesn't "work" or accomplish anything.  It drives me nuts to hear of "scientific studies" regarding the efficacy of prayer, etc.  Prayer isn't (or at least shouldn't be thought of as) anything more than a name given to a conversation with God.  If I were phoning the fire department to come put out a fire at my house, I wouldn't be extolling the "power of telephones" to put out the fire would I?  I wouldn't think of performing a scientific experiment to see how many fires were put out for people who used their telephones (regardless of who they called) versus those who didn't.  The focus is that you used a telephone - it's WHO YOU CALLED - whether it's a 911 call or prayer to the Creator of the Universe! 

People write books and have arguments about how to "pray effectively" and such, but as far as I'm concerned, that's all nonsense.  Have you ever listened to recordings of 911 calls?  It's sometimes amazing that the dispatcher can understand any of it - people are yelling and crying and babbling ... just trying to get HELP.  Yet there are no books (to my knowledge) written about how to make effective 911 calls.  The point letting the person on the other end know you need HELP!  Thankfully, we have Someone on the other end of the prayer hotline Who already knows what we need and is eager to grant us what we come to Him for when we come to Him through Jesus Christ. 

So with enormous gratitude to all our family, friends, and other prayer partners for Daniel for praying alongside us and "letting our requests be made known", I want to be sure to keep the primary focus on the One who ANSWERS those prayers for us and brings us safely through all the "Floods", "Fiery Furnaces", and trials that come our way. 

Thank You Lord Jesus!!!  Thank you for answering every prayer we've ever sent you - regardless of what that answer was, it was exactly what we needed and when we needed it.  Thank You.

- Tim -

A Potential Setback

We've had a bit of a setback tonight after having done so well today; Daniel is running a fever now with a headache.  Over the past hour, it's risen from about 99 to 100.8.  Not sure what this is about, but if there's a possibility of infection, we won't be going home tomorrow (which everything was the way things were looking until this evening.)  He's resting now having stopped "Cowboys and Aliens" half-way through (so you know he's not feeling well!)  Very frustrating.

If it rises above 101.3, they will automatically culture his blood and start antibiotics - which means we'll be here for a minimum of another 48hrs even if the fever goes away (to be sure nothing shows up on the blood cultures).

We may have gotten over-confident since his blood counts were so high on Friday (well into the "normal range" and they said this particular chemo drug shouldn't negatively affect them).  So we've been more liberal with visitors this visit.  But of course there's no way to know what, or even IF he's gotten anything at this point.  There are few better places to pick up an infection than a hospital anyway, 

Please pray with us that any infection (or possible drug reaction) would quickly die without the need for more antibiotics or any longer than needed stay in the hospital.  Please pray for Andrea and I as well if we need to make further arrangements for being here at the hospital longer than anticipated through this week.  The next few weeks are going to be particularly stressful for me at work as it is without additional  complications with unplanned hospital stays.

On a positive note, our friends the Kellers were discharged today as Joey was much improved from the horrible past few days he spent here in quarantine with a CDiff infection.  We saw very little of them, but are really happy they got through this. It was a very close call with something completely out of the blue - a complication of all the recent antibiotics.  They still are in need of a touch from God for the cancer though so please keep them in your prayers as well.

As always, we look to the Lord for guidance, strength, endurance, wisdom, and peace through all things and trust that He is in complete control and will most certainly turn all things toward good and for His glory.

- Tim -

The Start of Phase 3

The Start of Phase 3

(Mirrored on CaringBridge at http://www.caringbridge.org/visit/danieljmiller/journal)

 Though the circumstances of last week's hospital visits were far from desirable, it has at least afforded us an extra week's break before the start of our third phase of chemo.  It's been great for Daniel and he's show a lot more energy and better attitude than we've seen in a long time.  It's been an enormous blessing to all 3 of us.

This third phase, called "Interim Maintenance 1" consists of 4 hospital stays (3-4 days each) over the next two months where Daniel will get extra high doses of the drugs Vincristine and Methotrexate.  You may have heard of that 2nd one in the news recently as it's been one of the chemo drugs that are currently in very short supply from generic pharma companies that can't make any money from it.  So far, Riley tells us they haven't had significant trouble in getting what they need.  (hint: 1st Prayer Request).

Because of the extra high doses of this already nasty drug, they need to have Daniel under close watch for a few days after giving it to him. (2nd Prayer Request).  Because Daniel is still terrified of having to stay in the hospital alone for any length of time, we'll have to be there with him the whole stay.  Andrea and I are getting pretty good at tag-teaming it, and we've been VERY grateful for some help from other friends in this regard along the way also.  THANKFULLY, the hospital was willing to reschedule these stays to be over weekends for us so I don't have to miss any more work (or try to continue working after staying at the hospital all night-NOT fun!) 

This first stay, beginning tomorrow (Fri) morning, will also include a spinal tap & injection of MORE Methotrexate into his spinal fluid.  I truly hate everything about the idea of what we're doing to him ... except for the part about killing the cancer.  I'm reminded of the scene in "The Ten Commandments" where Ramses is accusing Moses to the pharaoh and adding little weights onto a balance scale for each accusation until it tips his way.  But then Moses adds a single BRICK onto the other side outweighing all the other points.  Well the ONE benefit of chemotherapy is kinda like that to me.  It's ugly, dirty, nasty, and horrible to look at - but if it does the job, it FAR outweighs everything else.

Ultimately though, our trust is NOT in chemotherapy, or even in miracles.  Our trust is in the One who holds the future - regardless of what it brings.  And though we shudder, and cry, and lay awake long hours trying to turn off the awful thoughts and images of what might be in our weaker moments, we know in our hearts that there is only one Source of Hope.  For if God is not in control, or He is not good, or He does not have our best in mind ... well then there's no such thing as hope ... only luck, if even that.  But we know these things are true for we know the One who IS the Truth.  And we've put all the chips on His "square" as it were.  It's all or nothing on God. 

And so - as best our faith allows us, we say with Job, "yea though He slay me, yet will I trust in him" (Job 13:15)  or with Daniel's three friends Hananiah, Azariah, and Mishael, "...If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king.  But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up." (Dan 3:17-18)

Thanks for all your prayers and support.  We cherish and need every one.



- Tim -

P.S. Please also remember to keep Joey Keller and his parents in your prayers too.  Join their CaringBridge site here:
http://www.caringbridge.org/visit/joeykeller

Easter at Riley?

(Mirroring my CaringBridge Entry at http://www.caringbridge.org/visit/danieljmiller/journal  Please follow us one one of the two sites for automatic notifications of new posts)

Easter At Riley??

Daniel had a rough day yesterday. Andrea reported that he was in tears most of the day without even really knowing why.  Wednesday (day before) he was at the clinic getting his last chemo of this "phase". It was a single drug, but his red cells were low enough that they gave him blood, which takes an additional 4 hrs & makes for a long day.  It's just never easy.

He had been running a low grade fever all day, and by evening it began creeping up.  We gave him Tylenol shortly before bed and it came right down, so I went to bed & hoped for the best.  I got up around 4 to check him and it was back up to 102.5 or so.  Previous experience prevented me from immediately rushing him to Riley ER even though that's actually what they tell us to do.  I gave him another dose & set my alarm for 6:00a.  At 6 it was down to about 100.2 so I chose to wait until the clinic opened in a few hours.  By 9 this am, it was back up to 102.7 so it was off to the clinic.  Andrea took him in while I came in to work.  But Daniel was in tears - sobbing actually - at the thought of yet ANOTHER trip to the hospital.  He tried everything he could think of to talk me out of it. I HATE being the one to force this stuff and am often feeling really alone in doing so anymore.  It's not always good to be the dad.  Andrea reports that he's been very stressed at the hospital as well all day.  It's likely that some of the emotional component is due to Wed's chemo, and also the fever itself.

Now at nearly 2:00, they're just getting around to giving him the antibiotic (no idea what the staff has been doing all this time since that's the PRIMARY thing they do for him, but I'm trying not to get too wrapped up about that.)  His white counts (and therefore immune system) have dropped significantly since even Wed and are now within just a few points of an automatic admission to the hospital.  They'll check his fever again soon and if it's not climbing, will likely release them to come home. But if it climbs again overnight, it will definitely mean an admission.  And if it's going up now, will probably mean the same thing.

I'm going to go out and look for some kind of gift to bring him and hopefully get his mind off it all.  Not the way we'd hoped to spend Easter weekend, but we know God has always been and will continue to be in the midst of all that happens.  Please keep us in your prayers

Specifically:
1. Peace and comfort for Daniel
2. Healing from whatever is causing the fever (an infection of some kind)
3. Strength for all 3 of us

We wish EVERYONE a wonderful and blessed Resurrection weekend remembering the unimaginable sacrifice our Lord went through on our behalf and His ultimate demonstration of victory over sin, death, disease, and all things that could come between us and our Heavenly Father.

Grace and Peace to all.

Catching Up: Much To Tell!

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

(Note: If you're not a regular RSS reader, please join us there. You can subscribe via email or SMS to our CaringBridge site to receive notifications for new posts.)

Catching Up: Much To Tell

The time is flying by lately and it's difficult to comprehend that we're already a couple days into Spring when Daniel was "just" diagnosed a week after New Year.  My posts have been getting farther apart as it's been a real challenge for me just to keep up with everything lately.  I may have bitten off more than I could chew ... or at least right at the limit ... with my Genesis study, but it has also been a wonderful experience for me and, in many ways, a kind of stress relief (or at least distraction) of its own.  Only 3 weeks left and I'm looking forward to the end with somewhat mixed emotions. But I really need the breathing room.

This past Sunday was Daniel's Benefit Concert that our good friend Eric Phillippe of "The Worship Encounter" (or is it just "The Encounter"?) put together for us.  Eric has been involved in the Christian music scene for many years now, and was able to pull together a free concert, featuring 3 Christian artists / bands at our church's "coffee house" in Daniel's honor.  A box for donations was set out, and they raised over $1600 as a gift to our family for Daniel.  You could have knocked us over with a feather.  To all who gave something to our family in Daniel's honor, please accept our deepest, humblest, and most sincere thanks for your kindness and generosity.

I feel badly that I did not clarify before hand how any such gifts would be used, but please allow me to do so now.  The primary purpose of the concert and the collection was always stated as being to help us with our medical bills.  And believe me, they're coming in now.  It took about a month and a half before we saw anything, but when the first pile arrived in the mail, it was ... sobering.  I'd been watching our insurance website and had seen that, in the first month or so, over $100,000 had been submitted to our insurance by all the various doctors, hospitals, clinics, labs, etc. but only $60,000 of it had been paid by insurance.  So far, only a relatively small portion of that has filtered through to us and we're waiting to see how it all pans out, but this is what Eric had in mind when he put the benefit together.

After much prayer and consideration, Andrea and I have decided to divide it up this way.  10% goes back to the Lord (of course). Another 10% will go directly toward something fun/ enjoyable for Daniel, and the rest will go directly toward his medical bills.  If any of you who made donations to us prefer that your gift be used differently, or exclusively toward something specific (after a tithe of course. :)  Please don't hesitate to contact me directly and let me know your preference.

The concert was wonderful.  It’s been a long time since my ears rang that long afterward, but it took me back to my high school and college days … well … enough about that!  First up was Rick Richardson and his worship team (including his wife Allison) who came down from Michigan just to play for us.  Rick, as well as Eric, had both been in my old youth group way back in the day when I was Youth Pastor for Lawrence United Methodist Church.  It’s been a great pleasure to watch them both grow in their relationships to God and to use their musical talents for His glory.  It was humbling to have them come and do this for us.  Eric and his band were next up, and lastly, “Under the Olive Trees” performed for us.  The lead singer of the band, Thayne Maguire, had also been a former student of mine when I taught at the various incarnations of the Bible college at Horizon.  In fact, he was in my Genesis class, and it was he that invited me to teach the course I’m doing right now, though in a different context.  So there was a lot of memories and “reunioning” going on Sunday night, and it was such a blessing to see these guys serving like this.  Eric is also putting together at least one more such concert down in Franklin Indiana as well.

Unfortunately, due to the large crowd, Daniel wasn’t able to attend.  So he and I recorded a video message that was played at the concert between the first two bands.  The video is “public”, but I believe a Facebook account is required (??)

https://www.facebook.com/video/video.php?v=10150770367219913

You can also view some pictures that I took of the event here (even if you don’t have a Facebook account.)

https://www.facebook.com/media/set/?set=a.10150770782684913.466204.665739912&type=1&l=00ef75a97b

Daniel has been doing very well recently – physically anyway.  Since his last treatment for osteoporosis, he’s been “a new kid” with much more energy - more than recently anyway.  He still tires quickly (after about a year of essentially no exercise, he’s pretty badly out of shape for a 10 year old).  But he’s back to building lots of Legos, dressing in his costumes, and today, he even built a pillow-fort; something I taught him to do many years ago, but I haven’t seen him do for nearly a year.  So that’s been very encouraging.  There has been a dark side though in that he’s been struggling more with depression on occasion.  It’s grown to the point that I actually approached the Riley psychology department for help.  Those of you who know me might be looking for headlines about Hell freezing over about now, but rest assured, I’m just being a good “engineer” (or maybe “battle strategist”) about this, and attacking the problem from several different angles and looking for what’s most effective.  While I continue to work with him directly from a more spiritual side, I was looking for more help with the “practical” side of things – some hands-on type exercises to help him deal with the stress of hospital visits and the negative thinking in which he gets caught up.  And they seem to be doing pretty well at that.  So I’m planning to give it some time and see how it works out. If I’m not happy with it, I’ll pull the plug and move on. I’ve gotten pretty good at that where doctors are concerned, so you can imagine that any secular psychologist is only a heartbeat away from being “let go”!  Ha ha.  Despite all this though, Daniel has been improving and moving in the right directions I think. We struggle a bit with getting him to eat enough, but that predates the leukemia.  The more frequent bouts with nausea certainly haven’t helped, but it’s been manageable.

Mom and Dad haven’t been quite so good of late.  This past weekend, Andrea came down with some kind of intestinal issue that has left her in a lot of pain.  I won’t go into any more details, but she could use your prayers.  I believe it was a mild case of food poisoning, but one of the doctors’ nurses thought it may be a virus that’s been going around.  Doesn’t really matter at a practical level, it’s miserable to go through.  Today she’s been a bit better, but she (wisely) decided that she shouldn’t take Daniel to his clinic (chemotherapy) appointment this morning, which of course left me to do it.  Now I actually really prefer to go to these appointments with him anyway. It’s fun to see the doctors avoid me when I’m in the clinic because they know they’ll be stuck for a half an hour answering questions. Ha ha.  But it’s been a real struggle to keep up at work recently.  Although I’ve been able to get my full 40hrs in almost every week since this started, it’s only been by working really long hours on the days I’m there, and frankly, the exhaustion factor has been taking its toll on my memory and efficiency.  I feel like I’m getting further behind and I’m NOT liking it.  I had taken the day off on Monday because Andrea was in such bad shape (and I was feeling really out of it myself after the busy weekend), so I really didn’t want to take another full day off in the same week.  It was a relatively short day at the clinic though and we were out of there before noon.  We stopped at the food court in the downtown mall (one of Daniel’s favorite places), and were home in another couple hours.  I’d fully intended to head back to work, but was so tired I thought I’d take a 15 minute “power nap” before heading in.  I woke up 2 hrs later feeling even more out of it than before.  I poked around on Facebook for awhile hoping I would snap out of it, but just couldn’t focus.  So I gave up and just relaxed the rest of the afternoon & evening alternating sleeping and vegetating in front of the computer.  I still feel like I could sleep for two days straight, but hoping the “day of rest” today will pay off at least for the rest of the week. 

Though we all thoroughly enjoyed the visitors and the benefit concert this weekend – and I wouldn’t trade any of it for the world – I feel like I haven’t actually had a weekend to myself in over 2 months.  Last weekend, Daniel was checked into the hospital and I spent Thurs, Fri, & Sat nights sleeping on a fold-out chair in his room and planning my Bible study lessons on my laptop while he played video games during the day, and so on it goes.  I’m not complaining, mind you! In fact, I’m REALLY grateful that most of his unplanned hospital stays have occurred over the weekend so that there hasn’t been as much impact to my work schedule.  I see that as a God-thing for sure.  But it is starting to catch up with me.  So I think we’re all recognizing that God is building character in us through all this.  For we are told:

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance;4 and perseverance, character; and character, hope.5 Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us. - Rom 5:3-4

So we look forward with eagerness and rejoicing to the eventual revealing of what God is doing in and through all these things to advance His kingdom and bring glory to Himself.  We rest daily in His promises, and I will close here with the one that has been the greatest sea anchor for me in the midst of these storms. (The sailors out there will know what a “sea anchor” is and why it fits better than a regular anchor in this context. :)

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

Grace and peace and many, many thanks to all

- Tim -

Still Here!

Mirroring our CaringBridge update here:

Sorry for the delays in posting. I sometimes forget that not everyone follows Facebook religiously!  We're still admitted here at Riley and Daniel has still got the fever and very low white-cell counts (ANC < 500 for those familiar).  So there's no immediate end in sight. 

I've spent all the nights here with him since he was checked-in, but Andrea is currently planning to spend tonight (Sunday) here so I can get a solid night's sleep before returning to work tomorrow morning.  Unfortunately, she's been feeling under-the-weather herself and now showing signs of a cold as well.  So that could very well limit her ability to even enter the floor here in the Oncology wing.

Though we still don't have this morning's counts, the past two days have shown very gradual improvements .. at least the numbers (fever and blood counts) have been heading the right direction as opposed to getting worse.  But they all still fluctuate wildly. So it could be a long week.  His next clinic visit is scheduled for Wednesday, but is dependent on his blood counts, so that could be delayed unless things improve markedly.  Hitting him with the next round of chemo after this bout really doesn't make me happy, but there are few choices here and until I hear something directly from God to the contrary, we intend to stay the course.

Daniel is not at all happy over the prospect that someone might not always be available to be with him 24/7, but at this point, that's a very possible reality.  Besides a couple of deadlines at work this week, we also have some evening events coming up that Andrea and I had really not wanted to miss as well.  So it's definitely one-day-at-a-time.

On the plus side, the recent purchase of my laptop has allowed me to spend some of the time here at the hospital working on my Genesis class materials.  So far, I've been able to keep pace at least with the lecture notes.  Despite the obvious timing difficulties, it's been a real joy for me to be teaching again and I'm very thankful that the Lord has provided the opportunity and, so far, the ability to keep up with the class.

On the minus side, we got hit with the first round of bills coming through this week.  It blew through our entire Flexible Spending Account allotment for the year in one whack.  We're looking toward at least 4 planned hospital stays during April & May, and this week's extended (unplanned) hospital stay will undoubtedly be racking up a pretty ugly financial picture for us this summer.  We hope and pray for no more unexpected visits / complications as have been plaguing us with the fevers over these past couple months. 

On a positive note, we've been extremely blessed at the thoughtfulness and all the work put forth by good friends Eric and Veronica Phillippe who are sponsoring benefit concerts in Daniel's honor this Spring.  The first one takes place a week from today at Horizon Christian Fellowship.  Unfortunately, it doesn't appear Daniel will be able to make it, but we're still hoping Andrea and/or I will at least be able to attend.  It's another of the amazing ways that God continues to touch and bless us through family, friends, and the Body of Christ during this difficult time. 

We'd love to see everyone if you can attend (and it's free!! :-)  Event details can be found here: https://www.facebook.com/events/326194700760323/  and here: http://www.horizonindy.org/news/benefit-concert-for-the-miller-family/)

We are so very, very grateful for all the prayers and comments that you all send our way.  We feel (and NEED) every one.  Thank you!

- Tim -

Back to In-Patient Status

(Mirroring our CaringBridge Entry here: http://www.caringbridge.org/visit/danieljmiller/journal)

 Back to In-Patient Status

Sorry the news has been slow in coming lately. It's not because there hasn't been any - just struggling to keep ahead of it recently!

Last week, Daniel received his medication for the osteoporosis, something he only gets once every 4 mos or so.  He was almost immediately a "new kid" again. He was feeling great, active, and happy - a real joy for all of us.  This rebound has been typical of getting that particular medication and it was the last round, when he didn't bounce back, that was the first clue leading us toward the leukemia discovery.  So this was a breath of fresh air for us.

About that same time, he received his "little gift" from the Indiana Make-A-Wish Foundation (they're awesome) which was a giant Star Wars Lego kit.  He had it built in less than 24hrs of working time and was very eager to show it off at his homeschool co-op's Lego Club on Thurs.  Dad (being the over-protective meany) was reluctant to let him go, but caved in the end simply because it was SO important to Daniel.  He was ecstatic ... a little too ecstatic.  Not only did he go to Lego club, but also participated in PE that day. He had a ball, and I was really glad for him. 

I was also expecting the return of a fever that has typically shown up in the evenings after times of "over-doing it".  It didn't show up until the following day and was fairly minor, so I didn't think much about it.  acetaminophen had usually done the trick and all was good.  But it didn't this time.  It kept coming back, and by mid-day on Saturday, it was hitting 103 so we headed to the ER again.  Same story - drew blood, start cultures, give him an antibiotic, and, because his white cell counts were good (strong immune system), sent us home.  But this time, unlike previous times, the fever wasn't gone.  We watched it through the rest of the weekend and up to his clinic visit on Friday - always toying with the threshold at which we're supposed to take him in.  The acetaminophen would usually help, but before long, it was back. 

It was around 100 at his clinic visit on Tuesday, but everything went ahead as planned.  Long-story less long, today (Thurs), we were back in the clinic after hitting over 103 last night and they've decided to admit him to the hospital.  In the past 5 days, his white cells (which had been going up) suddenly plummeted from 2300 down to 510 (normal range is 1400-8800).  500 Would be an automatic admission to the hospital.  When they also found his blood pressure to be low (and dad said he'd prefer they keep him to watch him anyway rather than running back and forth to the ER) they decided to admit him.

Unfortunately, having been spoiled last time, he was pretty unhappy to find he has a roommate this time, an older (teenager) whom I haven't met yet.  Andrea has been with him all day and I'll be heading that way shortly (still trying to make up time at work for having gone to the clinic with him on Tues) and staying the night with him.

The docs' best guess is that it's a virus, but the screwy blood cell counts, and lack of any other symptoms have everyone scratching their heads.  At this point, it's simply a waiting game to see how the fever and blood counts do after he gets fluids & antibiotics.  We were told that 99% of fevers never have their cause determined. I'm not sure that's particularly helpful, but it is more comforting than hearing "wow, I've never seen anything like THAT before" - which I've heard way too many times in my own life as well as about Andrea!!  :)

Nevertheless, we're confident that God is still God and still in control and Romans 8:28 is still there (I just checked!)  We are thankful for so very many things, and we can still praise and trust Him through all things.  We're here for a reason, and we trust that He will bring us through in a way that glorifies Him and blesses us ... perhaps later if not sooner ... but always a certainty.

We appreciate your prayers for, among other things:

1. Our wonderful Father would be glorified through this and all things,
2. The cause of the fever and low blood pressure, whatever it is, would curl up and die!  NOW!!  :)
3. Daniel's emotional health and endurance. He's really been struggling lately with depression & being overwhelmed,
4. Andrea's own health, energy, and endurance (it's tough enough to go through this for your child without also struggling with having cancer herself!)
5. Strength, perseverance, peace, and joy for us all.
6. Being able to keep all the "logistics" worked out between Andrea & I with work, the house, the dogs, etc.
7. That I would be able to keep on top of lesson planning for my Bible study.

- Tim -

Scares & Blessings: Part of the Ride

Mirroring the CaringBridge Post here: http://www.caringbridge.org/visit/danieljmiller/journal

It's been awhile since our last update.  In general, no news is good news, but it's just plain been B-U-S-Y!  Having started teaching an evening Bible study course in Genesis last week, it's been a real challenge to keep up with all that's going on.  But it has also been a blessing and a joy for me to finally get back to teaching the Bible again - one of my great loves. 

Daniel is now well into the 2nd, or "Consolidation" phase of his chemotherapy.  Each phase except the last is about 2 months long.  Unfortunately, we discovered last week that there are FIVE phases instead of the 3 we thought were coming.  So an extra 4 months before we get to the less-intense Maintenance phase, was not welcome news at all.  Each of the first 4 phases are intensive, and the 3rd one (April - May) will involve 4 pre-planned admissions to the hospital so they can watch him closely as one of the nastier of the poisons we're injecting him with is administered. 

As the weeks go by and I see the damage and reactions Daniel has to these drugs, I've been growing more and more upset at the thought of the what I'm forced to subject my son to.  Yes, I know it's the right course and I have no regrets or need of encouragement that it's the right thing to do.  But knowing it's right doesn't make it any easier for a father to subject his son to torture ... a tiny glimpse of God the Father watching the events of the crucifixion unfold.  What we're going through is nothing close, but it does at least offer some insight.  For me, it's that much more difficult knowing that it's entirely possible that Daniel may have already been completely healed from this disease and none of this is even necessary.  But God has not chosen to confirm that fact to me as yet, and so I am confident that this is the wisest choice. But it sucks no matter how you cut it.  Nevertheless, we rest in the knowledge of God's perfect goodness, grace, love, faithfulness, and knowledge of what this will bring in all our lives. 

Sometimes the experience reminds me of riding a commercial aircraft.  Being a pilot myself, I really REALLY want to be up front in that left seat - knowing what the flight plan is, the en route weather report, our exact position, nearest traffic and Pireps along the way, and when the next course change is coming up.  Sitting in the back with the flight deck door locked is frustrating.  But I always opt for a window seat so at least I can enjoy the never-gets-old beauty and joy of flying along the way.  The rest is in the hands of the guys up front ... who have a LOT more hours-in-type than I do and, whether I admit it or not, are MUCH better qualified than I to get the job done.

Yesterday (Tues) was supposed to be a short clinic day, though it did include a spinal procedure.  I had hoped to avoid going altogether as I'm trying desperately to keep up with a growing workload at work, but Daniel's face, when I told him I wasn't planning on going, put a quick end to those ideas.  His words were something to the effect, "I don't know why, but I always feel better and more relaxed when you're there when I'm having a procedure."  Well that ended that conversation didn't it?!  I'm putty.  Nuff said.

At least I've learned enough about this game to know to drive separate now since my class starts at 6:30p (unfortunately on the same days as our regular clinic visits now.)  So even though they scheduled an additional 4-hour IV infusion without letting us know in advance, I was able to head out after he got out of recovery and get a couple hours in at work before heading home for Bible study. 

The day, however, was just determined to NOT be uneventful.  As they started to give Daniel one of the nastier drugs in the arsenal (PEG-Asparaginase for the initiated) the nurse let me know that it is not uncommon to have an adverse reaction to it and she showed me how to stop the IV.  About 15 minutes into it, Daniel asked, "Dad, is there something I'm supposed to be looking for?"  I didn't understand his question at first, but a couple questions later I realized he was responding to something I'd said to him a couple weeks ago about watching for signs of reactions when a drug is administered.  He made it clear something was not right and he was feeling dizzy and having difficulty breathing. I immediately stopped the IV and Andrea went after the nurse.  In moments, our little cubicle was filled with nurses and doctors taking blood pressure and scrambling to get an infusion of Benadryl started.  His throat closed up, he became very flushed, and was bordering on panic before things started to calm down, but we were lucky to have caught things so soon and had a VERY quick response from the medical team on the floor.  Thanks to Daniel saying something so quickly!  I'm also really glad I had the conversation with him earlier about paying attention when a new drug is administered!

Everything was back to "normal" (which itself is a fast-moving target these days) in 10-15 minutes and he was conked out from the Benadryl.  The spinal procedure went about like normal (i.e. his blood pressure and pulse skyrocket as they prepare him and I give him a back rub to try (ineffectively) to keep him calm.  Nurse Sharon was there to do the procedure, so I stayed and had no problems.

Last week didn't go well at all.  He was so wound up, it took 3x the normal sedative to get him out, and then the doctor was there to do the procedure instead of Sharon, and wasn't doing well at getting the needle in the right spot.  Apparently, she's still "practicing" medicine! :(  I had to leave again.  That's the second time I've not been able to stay in the room - both times were when the doctor was performing the procedure instead of the nurse.  Go figure.

Anyway, though it took him awhile to wake up (because of the Benadryl), in a little bit, he was happily chowing down on a hotdog buried in ketchup and mustard and asking for the portable Wii to be brought in for him to play.

To help balance the day a bit, when Daniel and Andrea finally got home (sometime after I left to teach my class), they found that the Indiana Make-A-Wish Foundation had actually come through with locating and purchasing a rare LEGO set that Daniel had asked for.  (They're AWESOME!!!)  The huge box was sitting on the doorstep and by the time I got back home, Daniel had completely covered the Dining Room table with the pieces and was already half done with the two-part gigantic models.  You can check out the pictures Andrea took of the process (finished this morning) here: https://www.facebook.com/tmiller42

A huge thanks again to everyone thinking about and praying for us.  God has been answering them wonderfully!!

Grace and Peace to you all.

- Tim -