A Long Overdue Update

Hi everyone.  This update on Daniel is horrendously overdue, I know.  But at least, in this case, no news is relatively good news.  Things have been largely uneventful for Daniel and his leukemia treatment (PTL!)

First, a HUGE thank you to everyone praying for Daniel, Andrea, and all of us.  You can't imagine how comforting it is to know that others are standing with us on his behalf through all that we've been through.

Daniel remains in the 5th / final stage of his chemotherapy called the "Maintenance" phase which consists of a monthly visit for IV chemo drugs and daily drugs in pill form at home.  If all goes as planned, we'll remain in this stage until spring of 2015.

In general, he's doing well and continuing to improve.  Life has largely gotten back to a sense of "normal", though we can never completely get away from the ever-present knowledge and effects of his cancer.  The things that continue to plague him are:

1. Effects of chemo drugs.  The primary culprit seems to be Vincristine which he gets IV once a month.  It is a particularly nasty drug and has potentially long-term or even permanent side effects.  He experiences pain in his muscles and joints, much like arthritis, which is particularly bad after his treatment each month.  Usually it goes away after a week or two, but seems to be lasting longer recently.  It comes and goes, but occasionally, all 3 of us are acting like we're all 70 years old.  It would be comical if it weren't for the reasons!

2. He still dreads his monthly hospital visits.  They have reduced the number of spinal tap procedures (for which he has to have a general anesthetic - which he HATES) to 1 in every 3 visits.  That's down from 2 in every 3, so that's been really good for him.  But even the ones where he only gets an IV are still traumatic for him - he gets himself all worked up about ANYTHING having to do with doctors, hospitals, or sickness.  I've been working with him on prayer and "taking every thought captive", etc. which has helped and is, I think, getting better.  But video games are still more effective. hahaha.

3. He still takes a handful of pills every evening (not including various vitamins & supplements) as part of his chemotherapy.  They often result in mild to moderate nausea as would be expected. 

4. His osteoporosis (which predated the leukemia) continues to improve.  The last bone density scan showed marked improvement and we continue to anticipate an eventual full recovery.  In the mean time, the fractures in his spine continue to result in fairly frequent backaches & headaches that I believe are the result of muscle tension from the misalignment.  I'm trying to get BOTH of us on an exercise schedule to improve his core strength and help make that alignment better again.  Heaven knows we both need it! haha.  Though his level of activity and strength are returning, he's still got quite a ways to go to get back to "normal" 11-12 year old activity levels and strength.  He's still largely sedentary which I think is partly from lack of energy (from all the above) and partly it's just become habit.  I very much believe that more exercise will improve a lot of this as well as to build self-confidence and help break him (and me!) out of the sedentary habits that have developed over the past few years.  Heading into winter makes this more challenging, but hopefully, we can keep each other motivated!

In general though, we are VERY pleased with his progress.  There have of course been no signs of the leukemia since we initially went into remission a surprising 2 weeks after starting chemo way back in Jan of 2012.  The unfortunate part of that is that there is currently no way to tell whether the cancer is truly gone or not at this point.  It is completely undetectable.  All of the chemo treatment that remains is being done in an attempt to assure that it doesn't return.  "Relapses" are horrible.  The treatment starts over again from the beginning and the cancer itself tends to be much harder to get into remission and more likely to come back.  The thought of a relapse is terrifying - and that's why we spend more than 3 years pumping him full of poisons to make absolutely, positively certain (as possible) that every trace of the cancer is gone.  Unfortunately, since nobody knows what causes it in the first place, it's a complete guessing game as to why, how, when it might come back - or not.

One really good piece of news from the past few months is that he seems to have returned to a normal growth & weight gain curve.  He's once again outgrowing his clothes for which we are abundantly happy!  There are two unfortunate parts about this (other than the normal clothing expenses of course!).  First, the additional weight has bumped him into a higher category for the chemo drugs.  Believe me, the LAST thing I want to see is increasing doses of the chemo/poisons being dumped into his body.  Obviously, we believe it's for the best (or I wouldn't be continuing the course), but that makes it no less difficult to watch it happen - especially when you know he just barely qualifies for the higher doses and already suffers side-effects from the lower doses.



The second aspect of the weight-gain is that it's not all "good" gain.  The fact is, he's becoming slightly overweight!  I haven't computed a BMI yet, but you can definitely see in his face, chin, chest, and waist that much of his weight is not healthy.  This, in a sense, puts him over the weight category line artificially, and adds its own stresses to his system at the same time.  So it underscores the need for exercise, better diet, and less being sedentary in general (for ALL of us!)  Let's hope / pray for a relatively mild winter that will allow more outdoor activities!

Andrea remains about the same.  One really good piece of news recently was that the doctor finally agreed to try reducing her daily dosage of the chemo drug.  As a reminder, Andrea was diagnosed with a slightly different form of Leukemia (C.M.L. as opposed to Daniel's A.L.L.).  Her's, while not cureable without a full (and hugely risky) bone marrow transplant, is treatable with a drug - a single pill, once a day.  And while that in itself is truly miraculous, it is still chemotherapy and comes with all the same (plus some additional) side-effects.  For her, the most troublesome are the horrible lack of energy and the constant muscle and joint pain.  She feels like she's just run a marathon 24/7 and just getting up enough motivation to get out of bed is a major challenge every single day.  So the news that we could reduce the dosage by 25% was a huge blessing.  The jury remains "out" as to whether there's been a noticeable, lasting reduction in side-effects, but there seems to be a least some reduction.  And we'll take anything we can get!

There was a brief discussion about reducing it to 1/2 dose, but the doctor is reluctant to do that - at least not yet.  She even brought up the idea of trying to go off it completely (recall the above details about relapses).  He's very resistant to that idea, but the statistics he quoted really surprised me.  He said that about 40% of people that go off it completely have it return.  That's actually MUCH smaller than I anticipated (I figured it'd be more like 90-95%).  So that's something we remain in prayer about seeking wisdom & direction.

Thanks again everyone for your thoughts & prayers.

- 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 

Building Minds & Bodies

It's been a good week thus far.  We got out of the Hospital on Monday afternoon - the second fastest time we've run that marathon!  Since coming home, Daniel has continued to have periodic bouts with acheyness(?) in his back, but is otherwise doing well.  We're due for his next treatment with Pamidronate: the drug for his osteoporosis that usually makes him feel much better again in his back.  We've got the rest of this week and all of next "off" - a vacation from hospitals and cancer and the rest.  Unfortunately, his blood counts are low and so we have to be cautious, but we're finding more ways for him to be active and have visitors.  I'm pushing hard for more time in the sun and fresh air and more EXERCISE.  I'm working hard on this both mentally and physically.  Tonight was a good example.

I've been looking for ways to inspire him. Stories of my own battle with asthma that I conquered against the doctor's "certain" prognosis when I discovered weight lifting.  I also discovered, quite against my doctor's advice, that with a lot of work, patience, and supply of inhalers, I actually COULD teach my body to run and NOT have an asthma attack.  But this story's not about me - I was just trying to use any examples I could to inspire him to WANT to get in shape, to get healthy, and to realize that he CAN conquer much if not all of his lack of energy and stamina.  Low and behold, the more exercise he gets, the more energy he has.  Helping him to recognize that this is happening has been a huge motivator for him.  I've been surprised and blessed at how fast his energy is coming back.  

Yesterday, I took off work a bit early and we drove to Nashville, IN.  Unfortunately, we only had about an hour before they rolled up the sidewalks, but it was a great walk through town.  Afterward, we went to our favorite Mexican place down there and he had a fairly big dinner (loving to see his appetite returning).  Afterward we went to the State Park and did a small hike and gazed longingly at the giant indoor water park they have now at the lodge.  Promises were made about returning soon and possibly spending a night or two there in December like we traditionally have to celebrate our combined celebrations (3 birthdays, anniversary, Thanksgiving, Christmas and New Year all within about a month.  December is big for the Millers!

A few days ago, I introduced Daniel to Rocky Balboa.  I was surprised he liked the first movie as much as he did. There are some really slow parts to it. But he really loved the second one and I capitalized on the work-out scenes.  Tonight has been "guy night" as Andrea is at the hospital finally having a sleep study done.  She's been putting it off for about 10 years and I think Daniel and I have both finally goaded her into it.  She's never slept well and the combination of weeks of poor or no sleep combined with everything else are really taking their toll on her.  I only hope they can come up with something more helpful than a CPAP torture device (er "machine" I mean).  Prayers appreciated for her!

But I digress.  Tonight is guy night and so I pulled up Rocky III (the one with Mr. T in it) and he was riveted through it.  Afterward he began jumping up and down on my stomach (yes, he's done this since he was about 1 years old. It's the ONLY time I'm glad he's not gained any more weight in the last 2 years!) and said he felt like going for a run.  Now I had just finished half a pizza and it was about 8:30.  Read this as "dad wants to be done for the night"!  But I absolutely did NOT want to let this opportunity go.  I asked him if we wanted to drive over to the track at the elementary school up the road and he got a big smile on his face.  So off we went.  It was just about sunset and things were just starting to cool off. But it was light, and no bugs yet.  Perfect!

While I was still unloading my pockets in the truck, he took off running and I actually had trouble catching up (dad needs this at LEAST as much as Daniel at this point!)  We went around the 1/4 mile track 3 times letting him set the pace.  Most of it was walking but I'll bet he did a total of 1/4 mile running.  I was able to teach him a bit about breathing, pacing, relaxing, and most of all - ENJOYING a good run.  He loved it and I was in heaven (almost literally!)  By the time we got back to the truck he said he wanted to run some more.  But I put the brakes on not wanting to ruin a good thing.  

It was dark by the time we got back home, but he couldn't resist doing a bit more running in the back yard with the dogs.  I can't express how thankful I am for this night - on so many levels. You just really have no idea.  When he came back inside, I started Rocky IV (yes I know, it's way past bed time, but hey, it's guys night, right?!)  Shortly into it, he was ready to pass out & said he wanted to go to bed.  I told him he was perfectly welcome to do so, but the "work out scene" was about to start (which of course is the best part of all the Rocky movies! :)  He decided he'd stay up long enough to watch just that part.  Well the movie ended at about 11:30 and there he was jumping on me again and stating that I needed to hold this pillow against my chest because I was about to become his punching bag.  

By midnight I we had pulled out all my old martial arts pads and he was telling me how much I needed to buy us each a set of boxing gloves.  (Watching Rocky does that to you ya know).  My goal in all this is at least as much psychological as it is physical.  I'm looking for anything that will inspire in him a desire to fight, to win, to push forward, to "go the distance".  Guy stuff at some level, and that part's fun too - but HUGELY needed for a 10 year old going through cancer treatment!!! Finding and being inspired by heroes that are tough (in the right way), and determined, and willing to do what it takes to win the prize is something every boy needs - and those who's lives depend on that kind of toughness, all the more so.  Last night was Chuck Norris "Lone Wolf McQuade" inspired by some fun stuff David Silva posted on my Facebook wall (thanks Dave, it was perfect!) and a little hiking.  Tonight Rocky and some running; hmmm better start thinking about tomorrow night! :)

It'll be interesting to see how he (and I) feels tomorrow, but I couldn't be happier that he's getting his energy and enthusiasm back.  I know this roller coaster goes both ways though, and none of us is looking forward to the next two months.  But in our time off, I want to do all I can to help him enjoy life, to get his strength back, and to spend as much quality "guy time" together as we can.  Between hospital visits and work schedules lately, there has been precious little of that so it's a very valuable commodity these days.  The heat predictions are unfortunate - supposed to get over 100 tomorrow, but with the Lord's help and some imagination, I'm sure we'll come up with something fun and moderately strenuous to do while we can.

Thanks to all of you for your continued prayers and support.  I wanted to get a HAPPY report out for a change while things are going well. 

Thank you Lord for the bad times as well as the good.  Help us to be thankful in all things at all times and to trust that Your hand is always at work working all things into a pattern for good and for Your glory.  Please bless Andrea and Daniel this night with a rejuvenating rest and dreams as You continue to build their health and strength in body, mind, and spirit.

Grace and peace to all.

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 -

An Update & Some Prayer Requests

First, a huge thank you to everyone who has posted a comment or guestbook entry to the Caring Bridge site or the blog.  Please know that we read EVERY ONE and frequently go back through them again. Your comments, encouragements, and just letting us know that you're praying for us are absolutely wonderful.  Thank you all.

Daniel has been doing well and tolerating the chemo treatments better than average with regard to side effects.  Nausea has been very infrequent, and hair loss has only recently begun to show.  It's coming out fairly fast now though and he's certainly not happy about it.  The biggest problem is the ravenous appetite that the steroids give him.  He's put on about 10lbs in the past 4 weeks - a 16% increase in weight roughly equivalent to a 180lb person gaining 30lbs so you can imagine the effects on his body.  Combined with the bloating the steroids produce around the face and his gigantic belly, he's quite the site and becoming more and more uncomfortable.  It's exacerbating his back pain and the new brace that was made for him doesn't really fit at all because of it, so he can't wear it.  It actually causes him pain to put it on because the bad-fit forces him into an even more uncomfortable position.  The back problems continue to be a concern and I'll be pushing for more investigation / action on this front with the doctors this Friday.  This was one of the original problems that I was trying to get to the bottom of when the leukemia was discovered, but the docs don't believe they're related.

He thinks and talks about nothing but food and I'm having to be more and more hard on him about limiting portions, refraining from snacks, and drastically cutting back the total intake.  I'm really worried at this point that the food intake and weight gain will be producing it's own problems if it continues unchecked. 

We believe that this Friday will be his last steroid treatment - at least for awhile as we come to the end of the first phase (called "Induction").  He has another bone marrow aspiration and biopsy scheduled for Friday and, assuming the results come back as positive as we've been seeing, we'll then move into the "Consolidation" phase.  They haven't told us much about it yet, as the exact details are very dependent on these test results.  We know that it's still fairly intensive as far as the chemotherapy, but supposedly not as bad as this first phase.  I'm hoping we'll know all the new details on Friday.

This weekend, one of his good friends came over to play for a few hours and some of the girls from church his age made him a beautiful friendship quilt.  We were all REALLY impressed.  It was really good for Daniel too as I've more or less had him under reverse quarantine for a month now.  The good news is that his last blood test shows his counts beginning to make a slow climb again and the docs believe this is demonstrating the recovery of healthy bone marrow.  We want to see them continue to climb back toward the healthy / normal region.  Daniel is praying for the same thing just so he can have Taco Bell again!

Prayer Requests:
1. Continued good results moving toward (if we're not already there) complete and total healing
2. Wisdom, Courage, Endurance, Self-Control, etc. for Daniel with regard to food intake.
3. Sleep for everyone!  (Andrea & I tend to think/worry too much, & Daniel has insomnia as a drug side-effect ... so he lays awake all night thinking about food.)
4. Solutions / healing / wisdom about the ongoing & increasing back pain.
5. That Daniel will be able to deal well with the hair loss & other side effects - especially the visible ones - to his poor little body.
6. That all the lessons God has for us in this would be well-learned and that we as a family would continue to keep and protect the JOY of the Lord despite circumstances & worldly "wisdom".
7. That God would be glorified greatly through all this, and that others might come to know Him or know Him better through it.
8. Time management for me (Tim) as I try to balance work, time with doctors & hospital visits, & preparing for my upcoming Genesis class.

More Good News Today

(Mirroring Post on Caring Bridge)

We got some good news from last week's blood test results today. I'd forgotten to check back with them earlier in the week regarding the portion of the blood test that takes several days to get results back, but I reminded Andrea to ask them today during the weekly chemo visit.  This is the much deeper analysis of his bone marrow aspiration that looks for cancerous cells.  You may recall that the hospital does a "quick look" within just a few minutes of the procedure and we got those results back right away pronouncing that he was in full "remission" last Friday.  They found ZERO cancerous cells in that quick look analysis even though they know there are still some cancer cells lurking around in there ... that's what this deeper test is for.

They told us the goal is to get the total cancer cell ("blast cell") count down to 0.01%.  I believe this is what they hope to achieve by the end of the first month of treatment.  The results from last Friday came back at 0.013% - within just a hair's breadth of the goal already.  Andrea said one of the other doctors dropped by just to let her know how unusual this good a result is this early in the treatment plan.  I wish I'd been there to fire off my usual plethora of questions to them, but this is the first visit I haven't attended (trying desperately to catch up on all the work I've missed!)  Regardless, the news couldn't be better nor fall on more receptive ears.  Although still dangerously low, his blood cell counts are beginning to climb again too - also a sign that the good (non cancerous) marrow is working again and on the path to recovery.

Whether due to the thousands of prayers going up, or the wonderful medical staff at Riley and the miracles of modern medicine, or the trip to see Solomon Wickey, or some other factor, we give all glory and praise to our loving and gracious God.  We also want to continue to express our deepest thanks to all who have labored on Daniel's behalf during this trial.  I can't imagine where we'd be without so much help and prayer from so many.  Thank you.

Daniel also picked up his new back brace today and I'll be heading home from work soon to get my first glimpse of it.  Please continue to pray for his complete recovery with the cancer, the osteoporosis, the chemotherapy side-effects, the stunted growth issues (which we still haven't addressed), and whatever is the cause of his on-going back pain.  We also ask for prayers for wisdom and perseverance as we try to make the best decisions regarding visitors, diet, and finding our "new normal" as a family.

Thanks again to all.

- Tim -

Back to Back Issues

(Mirroring the recent post on Caring Bridge)
http://www.caringbridge.org/visit/danieljmiller/journal 

Daniel was back to visit the orthopedist at Riley yesterday.  He's been having back pain around the area of the original spinal fractures for about a year and a half now and it's been growing considerably worse lately ... not so much worse pain, but more frequent.  Most every night and often during the day, he complains about his lower back being "achy". 

For nearly a year, his upper back has begun bothering him too.  Originally, I thought it was more about poor posture than anything else, but over the past several months, I've noticed that his his shoulder muscles (traps) are constantly in knots - usually rock hard.  Several people have mistaken them for bones where there shouldn't be any.  So I've been pushing to get someone to take this seriously again.  This was part of what actually led to the leukemia diagnosis, but everyone agrees the leukemia doesn't explain what's going on with his back.

So we finally got an appointment back with the bone doc but his X-rays came back "fine".  Pretty much what I figured he was gonna say. :-(((  So he's prescribed a new brace for Daniel to wear that is supposed to improve his posture and help take any pressure off the area of the fractures and the "hunching" of his shoulders.  In general that's a good thing.  But I'm not at all convinced that's actually going to fix anything.  We'll see.  Hopefully, just dad being "difficult" again w.r.t. the medical community. 

Luckily, Daniel's not tooooo upset about having to wear a brace again.  He actually came to rely pretty heavily upon the last one even though it ultimately ended up doing more harm than good because it was formed wrong and actually pushed him into an incorrect posture.  (Dad is still kicking himself for staying with that doctor much longer than his intuition told him to.  *Sigh*)  Pray for me!!  Better yet, pray for that osteopath if this doesn't produce some results pretty quickly!  ha ha. :)

Please continue to pray for poor Daniel too as this just adds ANOTHER "thing" to his life.  Osteopaths, orthopedics, oncologists, hematologists, lymphoblasts, and chemotherapy have no business in the vocabulary of a 10 year old little boy.

- Tim / Dad -