Catching Up: Much To Tell!

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

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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 -

Home Again

As of about 7pm last night, Daniel is back home again & doing well.  His fever is very low-grade or non-existent at this point and we're ALL quite happy to be done with the hospital ... at least as an in-patient ... at least for now (sigh).

His white cell counts are actually back into the normal range, though red counts remain low and platelets have just gone nuts.  But we're assured it's all "fine". 

After spending Thurs, Fri, & Sat night and most of the days on Sat & Sun, I'm feeling pretty exhausted.  Losing an hour for SDST (that's Stupid Daylight Savings Time) hasn't helped as I could barely drag myself out of bed anyway!  So keeping up with work and my Bible study has been a bit more of a challenge this week and I'm feeling it.  But we were EXTREMELY blessed by a good friend coming by to spend Sunday night with Daniel at the hospital so that we could both have a night off.  Andrea was originally planning to come stay the night, but was absolutely dreading it as she was not feeling well anyway and has enough trouble sleeping without trying to do so on the hospital's pull-out chair and being awakened every 32 seconds by the nursing staff through the night ... OK, that was a slight exaggeration ... but not much!!  Needless to say, we were both extremely blessed by such generosity AND at having Daniel released yesterday.  THANK YOU LORD!!!  And thanks to all of you for your prayers.

Tomorrow (Wed) begins the 2nd half of this phase of chemo treatments & will be a long day.  We're also scheduled to meet with a pediatric psychologist to see if he can help Daniel with some of the stress and depression he's been dealing with.  This has become a big concern of mine recently as Daniel just doesn't seem to be dealing well with the whole situation.  10 year olds are pretty resilient little guys, but what he's gone through in the past 2 years would certainly challenge even the stoutest adult!  Most of the time, he seems fine, but any conversation about big-picture stuff, changes in plans, new challenges of ANY kind, or sometimes just for no apparent reason, he'll be in tears again.  Getting his mind off things is fairly easy with distractions, but it's clear to me that this is NOT the same as dealing with them and processing them. They're still in there "cooking" and I've yet to find a successful way to help him get them out. 

We continue to have conversations about giving things to God in prayer, about asking Him to give us peace, even about listening for His voice and imagining His arms around us.  But so far, it hasn't appeared to me to make much of a difference and he's not really come to the place where he does this on his own (maybe at all) when he needs to.

Whether the psychology department at Riley will be of any benefit remains to be seen.  As you might imagine, Dad (that would be me) has VERY mixed emotions about this, but I'm willing to give it a try and see what happens.

As always, prayers greatly appreciated!

- 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 -

New Phase - New Challenges

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

My apologies for not having given more updates recently.  I’ve been really tired lately and struggling just to keep up with keeping up.  Tuesday marked the end of our 10-day mini “vacation” between phases of chemotherapy – a vacation that saw us in the emergency room twice with mysterious fevers OBTW!   Tuesday was another long day at Riley as we began the “Consolidation” phase which will last for about 2 months.  This phase has Daniel on 6 different types of chemotherapy drugs and a few others used to help control side-effects from the severely nasty poisons being pumped into his poor little body.  A few things are new in this phase, one of which is the lack of steroids that caused his appetite (and weight) to go crazy during the first phase.  He gained 12 lbs in just 4 weeks!  So we’re thankful that part is done for the time being.  But now have new issues with which to struggle.  

During our brief break, Daniel began developing sores on the inside of his mouth. We’re getting mixed reports as to their cause, but I’m pretty confident they are a direct result of one or more of the chemo drugs.  There are 5 or 6 good-sized sores on his tongue and gums that really hurt when he opens his mouth or talks so, as you can imagine, his eating has dropped completely to the other end of the spectrum from just a week ago.  He’s also struggling with stomach pains.  Nausea is a common, and can be severe, side-effect of a couple of the drugs, but I’m not entirely sure what’s to blame.  At this point, they could be from not having eaten at ALL for long periods of time (he often has trouble distinguishing hunger pains from nausea), or gut cramps from constipation, or nausea directly from the drugs.  We have him on a scheduled anti-nausea med, but it remains to be seen how well this will help.

The other really new thing for us now is having to administer one of his chemo drugs at home through his “port”.  The port is a small plastic & rubber contraption planted under the skin and muscle of his chest just above his heart.  It appears as a small lump in his chest with a good sized scar above it.  When they draw blood or administer drugs, they put a single needle through the skin into the port and then use it for everything going in or out.  This avoids having to abuse the veins in his arms & wrists over and over through this process.  Usually, the “access” his port when we arrive at Riley, use it all day, then pull the needle out as we prepare to leave.  But now, they’ll be leaving the needle in and covering it with a large, clear, protective bandage with just the tube hanging out & taped to his skin.  We go into the clinic each Tuesday for the two months of this phase.  For the first two weeks of each month, they will leave the port “accessed” (needle left in) when we leave and it will stay in for another 3 days so that we can give the chemo drug at home for a total of 4 days in a row each time.  

An organization called IU Home Healthcare came out to the house last night (Wed) and the nurse taught us how to go through the whole procedure.  It’s ridiculously complicated requiring the anti-nausea med, the chemo drug itself, and then a dose of blood thinner to keep the port from clogging, with a syringe of saline solution before each for a total of 6 syringes along with special gloves, alcohol wipes, disposal procedure, and a “spill” clean-up kit that is literally a Haz-Mat kit that looks like it’s from a nuclear power station emergency procedure.  The warnings, procedures, and equipment that come with this chemo drug (Cytarabine) are really scary – yet we’re pumping our little boy full of this stuff every day now.  “Mixed Emotions” doesn’t begin to cover how I feel about it.

Daniel’s been very, very tired since starting the new regimen and I’m pretty sure it’s simply his body using all its energy trying to deal with the poison being injected into him.  But he’s also had a low-grade fever that we’re watching closely as well.  Again, I think it’s simply his body trying to keep up with the treatments. 

On the positive side, his last set of blood counts showed his white cell count (a measure of his immune system health) being well into the middle of the normal range.  You may recall that we hope to see this number over 1000.  1500 is the bottom of the “normal” range, and it goes up to about 8000.  On Tuesday, Daniel’s was 4000.  So, as he has energy, we’ll be trying to get him out & about.  Two months of almost no activity & laying around in bed all day is taking its own toll on both his physical and mental health.  My conundrum though is two-fold; I want him to get out of the house and get some exercise, but on the other hand, (A) it’s cold and flu season and even perfectly healthy people are sick all over the place and that, of course, is the last thing he needs.  And (B) the last two times he’s had visitors over, we ended up in the Emergency Room both nights with high fevers.  I’ve since become convinced that these were NOT due to infections (the fevers only lasted a few hours and came on too fast to have been infections), but rather were simply from over-exertion.  So we need to be cautious about how much to “push” him in getting some activity back into his life.  We probably have only a week or less before we expect his counts to drop again from the new round of drugs (I refuse to call chemotherapy “medicine”!)  Once they fall again, we’ll be back to quarantine and more careful food regulations.  

So far, I’ve been able to make up all the time I’ve had off from work attending doctor clinic visits with Daniel, but I’m not sure I’m going to get it all made up this week.  I’ve got a list of things piling up at home that need to get done and I feel like I need about a week of sleep (though undoubtedly that’s mostly stress-related), not to mention simply wanting to spend time NOT at a hospital with my family.  Andrea and I do most of our talking through text and instant messages and I can’t remember the last conversation that wasn’t about medical, health, or home maintenance issues.  We wouldn’t even have known it was Valentine’s Day had the nurses not brought Daniel some valentines cookies & a couple of gifts.  Andrea did get to buy herself a very nice necklace however since there just happened to be a big jewelry sale in the hospital lobby that day.  It was nice to see what I bought her afterward!  :-)

Andrea continues to struggle with her own health problems.  She’s been fighting off a cold for several weeks now and had trouble sleeping last night due to on-going joint pain.  She’s got a lot on her plate right now taking care of Daniel during the day and trying to keep up with the house despite her own leukemia, severe lack of energy, and other health issues.  She’s doing a fantastic job, but the stress is taking its toll on all of us.

This coming Tuesday (2/21), I’ll begin teaching a new evening course through the book of Genesis for 8 weeks.  I’m REALLY looking forward to it for lots of reasons, but also realizing it’s going to be a real challenge to keep up with everything else going on too.  I believe strongly that God has brought me to this decision and will see us all through it, but it’s definitely another leap of faith to add this log onto the fire right now.  

We remain eternally grateful to our “Wonderful Counselor” Who has kept us firmly in His care, prevented us in all ways from being tested beyond our endurance, and promised that “A.L.L. things work together for good…”  We also send our sincere and abundant thanks and love to so many family and friends, including many new friends we’ve never even met, for all you have done for us and continue to do.  We are constantly encouraged and lifted up by your prayers, notes, comments, and support. Again – thank you!

PRAYER REQUESTS:

1.   Complete and total health & strength for Daniel – Body, Soul, & Spirit

          Specifically:

          a.       Rapid healing of mouth sores
          b.      Better energy levels
          c.       Protection from infection
          d.      Freedom from nausea, fever, & other side-effects of chemo drugs
2.       Health and energy for Andrea – Body, Soul, & Spirit
3.       Help for Andrea with household chores
4.       That I would continue to stay in good health and be able to keep up with, well, everything
5.       Spiritual protection from the warfare that always comes with me starting a new Bible class
6.       That we would all draw closer to our Lord Jesus Christ through these trials and learn what lessons He has for us.
7.       That He would ultimately be glorified in all we do and all that happens.

P.S. Please leave comments for us and let us know you're there. We all love to read them!

Thankful For Nothing!!

Today we finally got the results back from Daniel’s most important bone marrow test that took place last Friday (2/3/12). This was “Day 29” or the final day of the first phase of his treatment.  This test was the one that would tell us (A) how well he responded to the first and most critical phase of treatment, and (B) how to proceed with the rest of his treatment over the next two years.  As I’ve written about previously, the goal for the first phase was to get him into Full Remission by Day 29.  This is determined by the “preliminary results” that are obtained usually within an hour after the test is performed by a lab right there at the hospital.  They look at a relatively small (tiny actually) blood sample microscopically and count the number of cancer cells found.  When the number reaches zero, he’s considered to be in “remission” or “Cancer Free”.  This does NOT mean he’s actually 100% cancer free though (go figure) – only in terms of that particular test.  A much more rigorous test is then performed by a specialized lab that takes a few days to complete and obtain results.  This is called a “Minimal Residual Disease” or MRD test and a sample of blood literally thousands of times larger is examined by special computer processes to look for more cancer cells.  Here, the goal is to get him to 0.01% cancer cells in his blood by Day 29.

We were very pleasantly surprised to find that Daniel had attained remission (the smaller test) only half way through the first phase – by Day 15.  And that same test showed him already at 0.013% MRD (the bigger test) … nearly to the end goal already.  But they indicated that, although that Day-15 testing was an important window into how the treatment was going, nothing would change based on its results.  Only the Day 29 test would make any difference.  The preliminary (smaller) test last Friday again showed zero cancer cells and that he was still in full remission.  And we’ve been waiting for the (bigger) MRD test results until this morning.  They showed that he had no only achieved the goal of 0.01%, but actually all the way to 0.00 – zilch, nothing, nada, not a single cancer cell was detected in the test.  Obviously we couldn’t be happier!  And as my title suggests, we are extremely THANKFUL for the test results showing NOTHING in the way of cancer cells (sorry, I couldn’t resist the title. :)

I asked the doctor whether this was something unusual (still hoping for a confirmation that our trip to see Solomon Wickey had produced something out of the ordinary (aka “supernatural”), but alas it’s not too terribly uncommon to have a 0.00% result on this test.  It is however, no less wonderful and worthy of celebration.  Whether through the efforts of doctors, Solomon Wickey, or the hundreds of faithful friends and family who have continued to lift Daniel up daily in prayers and fasting, one thing is clear – God has working in the life of our little boy to bring him through this ordeal and back to health.  A long and difficult road remains ahead short of some confirmation that this is no longer necessary (that was a hint, Lord! :), but we are extremely grateful to our Lord that Daniel is doing so well.  Our battle continues with the compounding side effects of the medications and the on-going susceptibility to infection during these next couple of months (not to mention the psychological impacts that Daniel has been struggling with more recently).   

Tuesday (Valentine’s Day), Daniel begins the 2^nd phase of chemotherapy and will be going in weekly for the most part on Tuesdays now.  Thanks again to all of you who think of us, read our posts, and / or pray for Daniel.  We love you and may God richly repay your kindness toward Daniel, Andrea and I.

- Tim -