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  

A Special Place In My Heart

Sharing a recent event ...

For the past few weeks, we've been trying to clean out Daniel's toys.  Approximately a year ago, we boxed up 8 full totes worth and stuck them in the attic hoping that the "out of sight-out of mind" addage would produce a lessened response to trying to get rid of a lot of them - especially at the local Clothing Sale this summer.  We did get rid of several totes worth, but still, the overall total continues to grow. For now, considering all he's going through, that's just fine.  We'll deal with the situation more forcefully some time in the future, but for now, many of these toys I consider a part of his "medicine" / therapy.

One night recently, Daniel was sleeping back in his castle bed after many many months down in the Family Room due to his impaired immune system with the leukemia.  I climbed the castle stairs to say good night and was greeted with the usual sight of a bed filled, not only with my son, but a plethora of pillows and untold numbers of stuffed animals.  Being in cleaning / decluttering mode as we were, I suggested that he take some time the next day to go through is stuffed animals to sort out a few to get rid of - perhaps to some other kids younger than him.  You'd have thought I'd shot him.

"NO!!" he exclaimed and as I began to formulate my argument, he went on to explain with tears welling up in his eyes that he knows each one of his animals by name and thinks of them as his closest friends.  He remembers where they came from and individual memories and feelings associated with each of them.  He looked me straight in the eye and, with absolute seriousness stated, "each one has a special place in my heart". 

I was speechless.  I knew instantly that no argument I could make could possibly counter that and gave up the fight then and there.  "OK" I said, "I can respect that".  I kissed him good night and climbed down the castle stairs designing a new shelving system in my head to get the stuffed animals up out of the way somewhere.  Clearly they were going to be around for awhile. But now, they have my full blessing as members of the family.  If they ever do leave, it will be by Daniel's decision alone and will undoubtedly be a significant event in his life and almost certainly for a good cause as a gift specifically to someone else in need.

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 -

Prayer Request

A quick update after last night's longer post.  Over night, Daniel has developed a very "croupy" cough and is coughing up phlegm this morning. So we definitely have an infection of some kind.  With his counts being as low as they are now, this is a serious concern.  His fever is creeping up just a bit this morning (now 100.8) and his heart rate remains high bouncing as high as 160 when he's active.  We had a round of diarrhea this morning which was no fun at all on the ridiculous little bucket chair thing they have instead of a real toilet in this room.

Please pray with us that we can get on top of this as quickly as possible and it does not worsen and is not something difficult to fight.

- 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