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 -

Glimpses of Eternity

Most things that come into our lives, whether good or bad, come and go without us ever really recognizing any eternal significance.  We tend not to question the good things that come our way; they’re good after all, we enjoy them for what they are and probably don’t even care whether there is significance beyond that immediate joy.  But the hard times give us pause. We wonder, perhaps hypocritically, “why did this have to happen?”  And we of faith look to God for answers.  Usually, we don’t get specifics other than a reassurance that God is in control; that all things work together for good; and trials produce patience and character and draw us closer to God.  And that is enough.  And it should be enough.  God owes none of us an explanation for what He does or why He does it, and His Master Plan is just that … HIS.  We couldn’t grasp it if we wanted to in our limited minds, knowledge, and existence.

Perhaps one of the most important lessons that can come from such times is this very recognition – God owes us no answers – and we MUST make peace with that fact.  The TRUST He expects of us, after all,  doesn’t come with qualifications: “I’ll trust you IF You tell me what’s going on”, or “IF You explain to me the eternal significance”.  Trust means we believe that God is God and we’re not.  Hope means resting in the knowledge that the future will be good because of what we know about God’s nature … so much so that we can be assured “that ALL things work together into a pattern for good” because God is Who He is.  He is loving and He is love itself.  He is righteous and righteousness itself.  He is graciousness and He is grace itself.  He is good and He is goodness.  For Love, Righteousness, and Grace do not exist apart from Him. They have their definition and existence in His character.  As I wrote in an earlier post, we can never hold God’s actions up against some independent standard of love, or righteousness, or grace because no such standard exists.  He IS the standard and these ideas exist in the first place because of Who He is.  Without God, there is no such thing as love or righteousness or grace.   And one of the most important and foundational truths that we can learn as we see Christian maturity is to trust Him for all things, at all times, in every situation, without explanation, without excuse, and without WHINING!  

The purpose of this life is NOT to make us happy and give us an easy time of it.  In fact, we’ve been promised quite the opposite – that this life will be difficult, the path will be narrow, and it will be filled with trials.  Learning these truths does not make it much easier to go through the dark valleys, but it does help process the things God allows to come our way and helps keep our focus on the Way forward.  I’ve heard it taught that we shouldn’t pray for God to remove the trials from our lives, but rather that the lessons they bring would not be lost.  That’s sound wisdom.  I’m afraid I’m not quite there yet though and I most certainly find myself regularly praying for deliverance and a swift end to suffering, be it my own or my loved ones.  Maybe one day I’ll be better at that part.  But when the answer comes back “Not yet”, it’s a little easier to understand why when I recognize my place in His eternal perspective.

Nevertheless, every once in awhile, He does give us the gift of a small glimpse into His plan – into the eternal clockworks of the awesome machinery that drives the universe forward according to His will and design.  We should always be extremely grateful when He allows us such insights, no matter how tiny.  And the glimpse I received a few days ago, if that’s even what it was, is indeed a tiny one.  But it brought me great joy to see the working of God’s hand in our lives and to be able to assign even a little “purpose” to an event that had actually caused great pain in my family’s and my lives.

If you’ve followed recent event in my blog here at all, you probably know about the misdiagnosis of Daniel’s leukemia that happened a couple weeks ago.  After having been told that Daniel’s condition was a more easily treatable type of disease and that the current success rate was in the 90-95% range, we got a devastating blow.  A very specialized cytogenetic test was done and when the results came back, they indicated that Daniel had a rare condition that was linked to a much lower probability of success.  In an instant, his prognosis dropped from 95% down to 60% or lower.  I briefly described the sensation of the world collapsing in around me in that instant and my own inability to even breathe.  There were some sleepless nights, enormous amounts of prayer, and a wrestling match with Fear that would have put Rocky to shame.  All of this served as an indicator of my own poor faith and shone the light on a number of areas that needed improvement.  But it also prompted a single text message to a good friend that set off a chain reaction resulting in a trip the following day to see an Amish healer named Solomon Wickey.  

I wrote briefly about this trip in an earlier post, but to summarize, we were granted a rare “emergency” appointment with this man who is known and respected literally world-wide for his healing ministry and has literally healed thousands of people from life-threatening and terminal diseases over his 30+ years of ministry.  We were in his presence for not much more than 10-15 minutes and he pronounced Daniel as having been “released” from the disease that was threatening his life.  We weren’t sure what to think.  We’re STILL not sure what to think.  I continue to await God’s direct confirmation to me of Daniel’s complete deliverance from Leukemia, but until that happens I feel I have no choice but to continue forward with the traditional approach – hoping – praying – believing that he is in fact completely healed.  And though the doctors reported only a few days later that Daniel had in fact responded ASTOUNDINGLY well to the first 2 weeks of treatment and was unexpectedly already in complete remission (they neglected to use the word “miraculous” of course! :-) I still don’t feel I have enough confirmation to pull him off of the chemotherapy.  Only about 2 days later, the doctors discovered a mistake in the interpretation of the genetic testing results and immediately came back to us stating that he was NOT in a super-high risk category after all.  His prognosis was still in fact in the 90-95% range and they apologized for the error.  Obviously, this was a huge relief to everyone and we thanked God for, in a sense, restoring our son to us (ala Abraham & Isaac in Gen 22)  But anyway, that’s not the point of this story.

It was a couple weeks later before it finally dawned on me that, had the doctor’s error in interpreting the test results not occurred – the tiny mistake that made for perhaps the darkest and most difficult weekend of my life thus far – I almost certainly would never have made the trip up to see Solomon Wickey.  And though I don’t know the results of that trip for certain, I tend to believe that some miraculous things happened at that time in all our lives.  And so the “lights came on” about how, in just this tiny little instance, God in fact kept His promise in a powerful way … that something that had the appearance of evil DID in fact work together into a pattern for good.  His hand was there at work the whole time, through the whole ordeal.  Not only was the trip up to see Solomon prompted, but I learned a number of things about areas in my own life needing work as well as some areas where God has already made improvements in me.  An enormous amount of prayer support was generated, and also wheels were set in motion that we believe will be bringing forth a series of events to help bring awareness, raise money, and bring additional glory to God through some good friends of ours (but more on that another time).  

It was literally in the same few minutes that I received this small revelation that God brought another thought to my mind.  If you’ve read my previous blogs, you’ve already seen this, but I had been contemplating (for obvious reasons now), Romans 8:28, “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.”  Suddenly, the word “ALL” came to the center of my attention.  I’ve literally heard entire sermons preached on the meaning and significance of this word in the context of this passage.  It’s a powerful word.  But what made it especially significant to ME at this particular point in time was the recognition that these 3 letters A-L-L are also those used in the abbreviation of Daniel’s particular brand of leukemia.  It’s properly titled “Acute Lymphoblastic Leukemia” – A.L.L.  And so, right after God’s revelation of how He had used the doctors’ mistake to in fact bring a unique blessing into our lives, He pointed out that … EVEN “A.L.L. things work together for good for those who love God…”

-          - Tim -

An Unscheduled Trip Back To Riley

Since Daniel's spinal tap on Friday, his pulse has been unusually high.  I've been watching it and was beginning to become concerned when it hit 140-145 a couple nights ago.  But last night and today it seemed better so we didn't do anything about it.  However, tonight, it hit 160 so I called the on-call oncologist from Riley and talked to her about what was going on.  She thought we'd be OK for tonight, but asked that I bring him in tomorrow morning to have his blood counts checked.  Since Andrea already has two other doctor appointments for herself tomorrow, I'll have to take off work again.  After having done so today for Daniel's Rheumatology visit, working late nights to make up the time is getting a little tiring.  But we do what we must.

Daniel is not at ALL happy about it though. Despite the fact that it's all done through his port and nearly painless, he's just really becoming overwhelmed with it all and dreads another trip to the docs & the hospital - especially back-to-back with today's visit. Here, he THOUGHT he was getting 10 days off and he's ending up spending more time there than usual.  He burst into tears this evening and exclaimed that "it's just too much".  He's right.  No 10 year old should have to go through this. 

But it did give me a chance to share something the Lord gave to me yesterday.  I was contemplating Romans 8:28 (as I seem to do frequently these days) ...

"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." - Romans 8:28 

Probably familiar to most folks - certainly a good one to commit to memory!  But what the Lord drew my attention to yesterday was the 5th word, "all".  You see Daniel's specific type of Leukemia is called "Acute Lymphoblastic Leukemia", abbreviated "A.L.L." 

So now my own PERSONAL rendition of Romans 8:28 reads, "And we know that A.L.L. things work together for good..." 

As always, prayers for Daniel appreciated, especially for whatever is causing the high pulse rate and his psychological ability to cope with all that's coming his way right now. ... in a word: Peace.

Waiting to Hear

Sorry to be so long this weekend in getting out an update from Friday.  Friday was "Day 29" of Daniel's chemotherapy and the end of Phase 1 called "Induction".  The goal of Induction is to achieve full "remission" which is defined as not seeing any cancerous blood cells in the hospital's microscopic inspection of the bone marrow.  Amazingly - very likely miraculously - Daniel was found to be in full remission at day 14.  His blood counts (red, white, and platelet cells) have begun to climb and show signs of healthy bone marrow making a comeback and as of this past Friday, his white cells (partly responsible for your immune system) were back above the magic level of 1000 meaning Daniel doesn't have to be quite so careful about visitors, being in public, and eating unsterile foods.  So it was his beloved Taco Bell for dinner on Friday night (does anyone remember the movie "Demolition Man"? ha ha

Other than the standard precautionary spinal injection of chemo drugs (which they always due as a preventive measure), there was no chemotherapy given on Friday, but they performed a spinal tap and bone marrow test.  The spinal tap draws spinal fluid to ensure that no cancerous cells have gotten into the spinal sheath (where it becomes very hard to treat.  The bone marrow aspiration and biopsy draws a sample of both the marrow itself and the bone to look for cancer cells and see how things are progressing.  Because leukemia is a cancer of the bone marrow, it is the only way to see accurately what's going on.  The initial results that can be obtained directly by the hospital lab were again positive and showed no cancer cells.  The more comprehensive test must be sent out to a highly specialized genetics lab and takes a few days to get results.

The docs however were confident enough from his history and current numbers to go ahead and give us the details of the next phase (called "Consolidation") that they plan to pursue assuming the test results come back as good as expected.  I have mixed emotions about making assumptions everything will be good.  Perhaps it's my cynicism, perhaps it's experience, perhaps it's my discomfort with making assumptions about what God is up to - but I dislike "counting my chickens before they hatch" as it were. So I remain, and request family and friends to remain - in interceding prayer for Daniel.  The last time I "relaxed" after hearing good news, I got one of the worst shocks of my life when Daniel was moved to the Very High Risk category and we were told he had only a 60% chance of living.  That turned out to be a false alarm, but I've tried hard to learn my lesson about making any assumptions or relaxing my constant petitioning before the Lord throughout this ordeal.  After all, I'm quite confident that He has allowed all this to come into our lives in order that we may learn and grow and draw closer to Him through the midst of this fiery furnace.  After all, those who looked in through the door and saw the 4th Man walking around there with Hananiah, Mishael, and Azariah (Daniel 3) were undoubtedly amazed and learned something.  But no one knew more about that 4th Man than the 3 who were preserved through the flames with Him, and had their bonds burned from their hands and feet, and who walked side-by-side with Him through the very valley of death as a reward for their faith.  But I digress. :-)

The next two months, if all goes as expected by the docs, will consist mainly of continued weekly chemo treatments and all the horrible side-effects that come along with them.  At least we will be (mostly) done with steroids and his appetite is already beginning to return to normal.  We look forward also to getting back on track with trying to find out why he continues to suffer from back pain and fairly intense muscle tension too.  It's still a very long and difficult climb ahead for our little guy.  But my Pilgrim's making great Progress.

















Please continue to pray for the good test results the doctors are expecting and for the faith, perseverance, patience, and endurance Daniel needs to get through all that lies ahead.

- Tim -

End of Phase 1 ... Hopefully

Tomorrow (Fri) we head back to Riley again for another bone marrow test to see exactly where we are.  If all continues to go well, this should be the end of the first phase of Daniel's chemotherapy referred to as "Induction Phase".  They we will enter into the 2nd or "Consolidation" phase.  So far it's been described as "also intensive", but we have almost no other info on what to expect.  We THINK we heard that he'll go off the steroids though, and that will be a WONDERFUL thing ... we think.  The side effects over the past 28 days have been horrendous.  The bloating, RAVENOUS appetite, and mood swings (though the latter have been extremely rare & mild) have made our poor little guy miserable.  Andrea recently said that he looks like he's 7months pregnant - looks more like 10months to me!! ;-)

As of today, I've finally had to step in and put some harsh (according to Daniel) limits on the food intake.  I've limited him to eating only every 3hrs with nothing but liquids between, and those meals will be small and low-calorie.  Apparently neither Daniel nor Andrea are happy with me (mostly because she has to be the one to enforce this while I'm at work) - so I'm the bad guy right now.  That's OK.  Hopefully, we heard right, and the steroids will be done, at least for awhile(??)

If nothing else, it's been an opportunity to have some real "on the ground" conversations about things like self-control, discipline, and hunger in general.  Daniel will certainly have an empathy for a whole new set of people in the world as we come through this and I don't want to miss the opportunities to help him process that.  Of course that doesn't make it any easier to go through ... for any of us.

Please pray that the test results continue to come back as positive and hopeful as they have been, and that this next phase will offer some relief from the worst of the side-effects.

... Also for wisdom, and perseverance for both Andrea and I as we have to force some unpleasant limits on a little guy we'd much rather be spoiling right now for all he's going through.  :(

- Tim -