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 -

Home Again Home Again Jiggity Jig

(Mirroring post on our Caring Bridge site)

With another HUGE THANK YOU to friends who have helped us at the house recently, we've been able to get things close enough to the *appearance* of order that dad (that would be me) is willing to bring junior (that would be Daniel) and mom (that would be Andrea) back home again.  It's amazing to realize that less than 3 weeks ago we were awaiting our first appointment with the new Rheumatologist at Riley - the appointment that triggered the discovery of Daniel's leukemia and the immediate hospital admission and all that followed.

This Friday will mark exactly 3 weeks since we got "the news" that has certainly changed our lives forever and brought everything in our world to a complete standstill for a season.  During that time we've been devastated, elated, confused, tested, and perhaps more than anything, humbled by the generosity, grace, and outpouring of love from our Lord and Savior - mostly through our friends, family, and even complete strangers literally from around the world.  What we've been able to accomplish at the house in that time, despite living in my folks' spare bedroom, trying to keep up at work, and spending inordinate amounts of time at the hospital, is due almost entirely to the outpouring of love and effort by those around us. 

We are in (what we hope is) the worst & most vulnerable time of Daniel's chemotherapy ... the first and second months of treatment.  During this time, his immune system is severely compromised and at times, nonexistent. Being in the worst of the cold and flu season to boot, we are of course extremely concerned about keeping him from all potential forms of infection to the greatest extent possible. This is what caused us to tear out the 427 year old carpet on the first floor of our house.  And now, only two weeks later, the new flooring is installed, and much of the house has been cleaned, and we're getting things put back in their places (more or less).  The biggest issue for me has been making sure we're cleaned (disinfected) as much of the house as possible before bringing Daniel back home.  The last major portion of that process happens tonight with a furnace system cleaning & servicing and, hopefully, the purchase of a new room air purifier that I plan to get during my lunch break today.

After the service call tonight, assuming all goes well, we plan to move everyone back home and set Daniel up with the Family Room as his new bedroom.  Andrea has worked extremely hard despite her own challenges with energy and stress throughout this ordeal to try to restore order to the house while I try to keep up at work without burning through my entire vacation allotment in the first month of the new year.  I'm hoping to qualify for FMLA leave, which would be unpaid but would at least allow me to preserve some of my PTO leave for the next 11 months.  Unfortunately, I haven't yet been at Raytheon for a full year yet and that may disqualify me until mid-March. We'll see.

Again, we want to thank those who have been able to help at the house, help with meals, and provide us with prayer cover. In many ways, we're still just getting started on this "adventure", so please PLEASE keep them coming for us as we seek wisdom, strength, faith, hope, endurance, and love through the times ahead.  We're absolutely confident in the wisdom, providence, and love of God through this, "and we know that all things work together into a pattern for good" in our lives and this is certainly no exception.  God is good. He is in control. His plans for us are beyond our ability or need to comprehend and we trust Him completely for what lies ahead.  The similarities to Abraham's story have certainly not been lost on me during these past few weeks and I look to his example of incredible faith and trust in God with the life of his only son Isaac.  I only hope to fare so well as he did.

By faith Abraham, when he was tested, offered up Isaac, and he who had received the promises offered up his only begotten son, of whom it was said, In Isaac your seed shall be called, concluding that God was able to raise him up, even from the dead, from which he also received him in a figurative sense. - Heb 11:17-19

Grace and Peace to all,

- Tim -

Kicking a Guy When He's Down

(Re-posting our latest Caring Bridge entry)

While Andrea and I were out running around today trying to get the house back in order enough to move back, my folks were gracious enough to watch Daniel for us for much of the day.  Unfortunately, while I was out and about, I got a call from Daniel's grandparents that he had fallen in the house and injured his back again.  I couldn't tell how bad it was over the phone, but clearly he didn't want to move and was asking for me to come home to help him get to the bathroom.  Luckily, I wasn't that far away! 

His back injuries of course, are what started us down this whole road about 2 years ago leading to the initial diagnosis of Juvenile Osteoporosis - an extremely rare disease in children.  It took nearly a year and 6 different doctors to get him diagnosed correctly and on the right treatments for that.  But when we realized that he wasn't growing or putting on weight and seeming to grow more and more lethargic, we began seeking additional help. Clearly the osteoporosis wasn't the whole story.  A year later, here we are with leukemia and we're STILL not certain we've gotten to the bottom of things.

His bones were responding well to the osteoporosis medication, but now that were on chemotherapy, one of its side effects is that it can again lower his bone density.  In fact, the medication he has been on for the osteoporosis is often given to leukemia patients anyway for precisely this reason.  So we have no idea what shape his bone density is in at the moment and to have another back injury like this really a complication we just don't need.  Previously, he'd actually had a number of compression fractures in his spine that helped lead to the correct diagnosis (once we found a doctor that could actually read an X-ray ... but don't get me started on that!)

He's resting well now and a combination of ice, heat, and Tylenol with Codeine seems to have done the trick for the moment.  Tomorrow will likely tell a clearer tale.

Daniel has really been struggling with depression lately and it's difficult to get him to talk about his feelings ... but I keep prying.  Today's "insult" certainly didn't help.  But it did give me the opportunity to open the subject more and have a good talk with him about keeping our joy and peace even in the midst of trials.  We talked about taking every thought captive, about the peace of God and how it's different from the peace the world offers, and about not letting the devil, or circumstances steal our joy ... or any other of the Spirit's fruits from us.  It seemed to cheer him up a lot and we talked and laughed for a good 1/2 hour or 45 minutes.  Then he went straight to sleep and is now resting soundly.  A real blessing to see after seeing him struggle so much recently to get even a few hours of sleep.

Andrea returned home just a few minutes ago from cleaning at the house all day long.  She's completely beat. A HUGE THANK YOU to our two friends who were able to drop by today for a few hours to help. Your generosity is GREATLY appreciated! 

I had hoped to be able to get us back into the house by the end of this weekend, but the situation just hasn't quite worked out.  We're getting closer, but there's a lot left to do just to satisfy me that things are CLEAN enough for Daniel's severely compromised immune system.  But we're closer and my wonderful folks have been extremely patient in letting us stay with them while the house is under construction.  We certainly couldn't get through this without all the wonderful friends and family around us.

Thank you all for your prayers and continued support.  We continue to solicit and value your prayers the most.  Please pray for:
1. Daniel's continued recovery and lessened effects from the chemo drugs.
2. A quick recovery from today's back injury
3. That he (and all of us) continues to keep a positive attitude and trust in the Lord for the future - focusing here and now on peace and joy rather than negativity and despair
4. That my and especially Andrea's health would hold out while our lives are so disrupted as we try to get the house back in order and get back to some level of "normalcy" as soon as possible
5. Our finances.

A Very Happy Day

(This same post appears on our Caring Bridge site. Reposting here for convenience.)

Sorry for the delay in getting this out - a really busy day yesterday, but a really, really happy one for us all.  I also apologize for another really long post.  I’m going to try to address the big picture for what lies ahead for Daniel here for those who have been wondering & asking – along with the possibility that Daniel may already have been completely, supernaturally healed of this. So it’s going to be long.  But I’ll start with a quick summary.  Please also see our Prayer Requests at the very end.

SUMMARY:

Daniel’s chemo treatment and bone marrow test yesterday were both very successful and he’s almost entirely without pain today.  We consider this to be nothing short of miraculous given how difficult the procedure was for him last time. We thank the huge number of people praying for Daniel, the doctors, and our family through all this.  The test results, rather unexpectedly show Daniel to already (after only 2 weeks) to be in remission … NO CANCER CELLS were found in the preliminary lab tests (2 weeks ago he had around 70% cancer cells in his bone marrow if my memory is correct).  This may or may not be due to a direct supernatural healing, but it certainly doesn’t rule it out.  It’s not “normal”, but certainly not unheard of to show a zero count after only two weeks of chemo.  The next test in 2 weeks, may be a better indicator as to whether something really unusual has taken place.  J  Daniel is doing very well and is almost pain free; a huge difference from the first procedure. This may be because his bones are softer from the chemotherapy, it may be because his marrow is thinner (also from the chemo), or it may be because half the planet has been praying for our little guy and we have a wonderful, gracious, God who’s got our little guy firmly in the palm of His mighty hand.  I know where my money is. J

THE REST OF THE STORY:

Though our diagnosis had changed last week back to something pretty positive, we were dreading yesterday's test results simply because we knew they were so important to Daniel's overall prognosis and the road that would likely lie ahead for us.  We were doing our best to walk in faith and trust that, even with bad outcome, things were still eventually going to be OK.  And despite the enormous amount of prayer that our whole family has been bathed in over the last couple weeks, despite our awesome our God is, and despite being in one of the best children's hospitals in the world, it's been hard; really hard; considering what's at stake for us.

A.L.L. LEUKEMIA & TREATMENT OPTIONS:
In general, the approach to treat this type of leukemia is to hit it hard with chemotherapy for the first month and see what happens.  We’re trying to kill off all the cancerous cells in existence in his body and then let the good ones rebuild his cell counts.  If the cancer responds well (by dying!!), then we continue on a regimen of chemotherapy that will last, in total, for about 3 years.  The first 2 months are the worst (most intense with the worst side-effects) and then things slack off gradually out into a maintenance phase for the last couple years.  If things do not go well then there are several options depending on the exact nature of how the cancer is responding.  In general:

The first option is to use the chemotherapy even more aggressively and see if it can be brought under control that way.  Chemo is always preferred because of the risks in the next two options

The second option is stem cell replacement therapy.  This is similar to the third (bone marrow replacement).  It's less invasive and has lower risk of rejection, but is also much newer and takes much longer for the patient to get back to normal if it works.

The third option is bone marrow replacement.  It's dependent on finding a suitable donor and very risky.  Firstly, the new marrow has to "take" (graft in well and continue to grow) and secondly, there is the possibility that the patient's (host's) body will recognize the new bone marrow cells as "invaders" and attack them like a virus.  This is really bad leaving very few possible solutions.

DETERMINING WHICH PATH TO TAKE
The doctors figure out which path to take by watching how well the first rounds of chemotherapy work.  Initially, Daniel had a bone marrow aspiration and biopsy done to find state of the leukemia before treatment began (a “baseline”). That was 2 weeks ago when we checked into the hospital.  The procedure itself didn't go well and took 2 doctors and 3 tries to get what they needed.  He couldn't walk for 2-3 days afterward & said it hurt worse than the surgery to install the port in his chest.  They found that cancerous cells made up 70% of his bone marrow.  They determine this by taking a tiny portion of the material and looking at it under a microscope.  They literally count the number of good & bad cells they see on that one slide.  I believe this is done largely by computer, but not entirely sure.

Usually, they wait until the first month is complete (29 days to be exact) and then take another look at the marrow.  If all is going well and responding to the chemo, then the goal is to be "cancer free" by day 29.  "Cancer free" (aka "remission") does not mean there are no cancer cells left in the body; it means they can't see any on the one slide taken from the one sample of the one spot in his bone marrow.  It's a good test and even with modern more advanced techniques, it still remains the basis for pronouncing a patient to be "in remission".  If the patient is not in remission, then they start making changes to the therapy process (the exact, step-by-step procedure for the therapy is called a “protocol” and is created and shared by hospitals across the nation based on thousands of cases studied in various trials.  Fascinatingly, these are much, MUCH better for kids than for adults.  We’re pretty thankful for Daniel’s sake that the children’s hospitals do such a great job with these studies and sharing information.  That the adult hospitals don’t share this level of scientific discipline and communication is infuriating.  We’re trying to get Andrea moved to Riley, but so far no luck. He he. :-)

As I stated though, “remission” at this point does not mean there are no cancer cells anywhere in the body.  Only a single cancerous cell anywhere in the body is capable of starting the whole thing over.  And “recurrence” as it is called, is much nastier and harder to treat.  So the chemotherapy continues for about 3 years to make absolutely sure they get every last cell.

BACK TO DANIEL:

In Daniel’s case, they decided to do another aspiration (but not the biopsy, which involves taking a bone chip as well) half way through the first month instead of waiting till the end.  This is probably because of the unusual chromosome abnormality they found last week that gave us such a scare.  So yesterday was the half-way point and our first "window" into whether the chemo was working.  It wouldn't change the treatment for this first month regardless of the results, but it would tell us pretty clearly whether he was responding and what lay ahead for us.  And we were all really nervous about it.  Daniel of course was really dreading the procedure itself and was also, and rightly so after the first one.  But he was also really anxious about the results.

YESTERDAY’S PROCEDURE:
Having learned my lesson during the first procedure, I stepped outside the room while they performed it.  Now in my own defense, I do NOT have a weak stomach! :-)  I've watched dozens, maybe hundreds of procedures for everything from face transplants to brain surgery to hip replacements to open heart surgeries on TV.  I've watched several actual procedures, both live, and through the endoscope on Andrea, and was personally present in the OR during Daniel's C-section birth.  Such things have always fascinated me, and if I had a better memory, I’d have likely gone to med school myself.  But two weeks ago, when they performed this simple procedure on Daniel, I very nearly passed out ... twice!!  I had to leave the room and sit down and even that wasn't enough. I actually had to lay down on a bed in the recovery room to keep from going out.  Once I recovered, I went back in, but had to leave again in less than 2-3 minutes.  It wasn't the procedure, it was the fact that they were doing this to my beloved son Daniel.  I learned something about myself.  And though I desperately wanted to be there for him, it wouldn't have been helpful to anyone for me to end up as a distraction on the floor!  So I stepped out of the room.  Fool me once …

No more than 4-5 minutes later, the door opened and they were done and Daniel was already awake and ordering lunch!!  I was shocked.  My immediate thought was simply PRAISE GOD!!!  And my second thought was that this was clearly a direct answer to an enormous number of prayers offered up by people literally all over the world on my son's behalf.  I cried.

Within about a half an hour (shockingly fast actually) the doctor showed up (we hadn’t seen her at all yet that day as she wasn't even working the clinic yesterday.  But went straight to the lab after Daniel's procedure to learn the results and came to report them straight to us.  I REALLY like Dr. Hege! :-)  She walked in with a big smile on her face and reported that here, at only week two, Daniel had ZERO cancer cells found on the slide and was now considered in remission.  You could have knocked me over with a feather.  All three of us cheered!  I proceeded to grill the doctor with technical questions (as they’ve apparently come to expect now) as well as making it clear to her that we were not upset with her at all for last week’s confusion about the genetic test results.  She was grinning from ear to ear along with us.

SUPERNATURAL?
At that point, I decided to put my real question to her.  I told her briefly about our trip to see the Christian "healer" and that he had pronounced Daniel to be completely cured. I said, "I'm not asking you to accept or believe any of this, my question to you, as a medical professional, is simply that IF this were true and Daniel had been completely healed, is there any way that we could confirm that with testing?"  She stared at me for a minute, but it wasn't a look of disbelief or consternation, she was really thinking hard about my question.  I spoke up again and said, "I'm really expecting to hear that there's no way to tell by the tests we have whether the results are due to really effective chemo or from something supernatural - but I wanted to either confirm that or have you tell me that there is a test that we might expect to be different if something supernatural had happened."  She looked a bit relieved and confirmed what I already figured - at least for this particular test.  If the results had been bad, we would certainly have known the answer.  And in fact if they even had been normal (i.e. they still found a few cancer cells, but lower in number than the first test), we would have known that Daniel had not been completely healed.  But the fact that we found none after only two weeks does sometimes happen with chemotherapy alone. So at this point either is certainly possible, but we can’t know for sure “scientifically”.

HOWEVER, two weeks from now, at the Day 29 test, things might be different.  They will still do the same microscopic analysis here at Riley, but they will also send out the sample to a very special lab for a much more in-depth test that will look at a much larger portion of the sample.  And though I didn't get as solid an answer as I'd have liked, I think she agreed with my suggestion  that, if that test came back and said they found no cancerous cells anywhere in the sample, that would be an indication of something beyond the expectations of chemotherapy alone.  I will still need a strong confirmation directly to me before I would consider pulling Daniel off of chemotherapy, but a genetic lab test result of zero "blasts" (cancerous cells) would be very dramatic indeed!  I’ll be talking further with the docs if we see something like that in two weeks.

CURRENT STATUS:

As of today, Daniel is doing well. His appetite has been VORACIOUS and he’s put on over 7 pounds in the past 2 weeks – that’s more than 10% increase in body weight.  Think of 10% of your own body weight to get an idea of what that means for him.  He’s gotten up at 5:30 or even 3:30 starving and unable to sleep several times with strong food cravings.  This is becoming it’s own concern, not just for the rapid weight gain, but it’s having effects on his digestive tract as well.  This is an expected side-effect of the steroids as is additional swelling around the face and neck making him look even bigger than just the weight gain alone.  He’s embarrassed about it and we’re working with him to put limits on what and the amounts he’s allowed to eat, but it’s being hard on him either way.  He’s beginning to have more trouble with indigestion and sores in his mouth (One of the chemo drugs attacks the lining of the digestive tract and can cause these sores throughout.) 

His blood cell counts were also the lowest we’ve seen them yesterday.  They gave him transfusions of both red cells and platelets.  Unfortunately, white cells can’t be transfused since each white cell must be individually “programmed” by our bodies or they will actually consider a new body to be an “invader” and attack it.  So Daniel is even more at risk of infection and will likely continue to be for at least the next couple weeks.  After that we hope to see his own healthy cells starting to come back again.

PRAYER REQUESTS:

Please pray that ...

On-Going:
Above all - that the lessons available to us all in this trial would not be lost or minimized, and that our wonderful God would be glorified through it all.

1. Full healing for Daniel and direct, clear confirmation to Dad - whether supernaturally, or through docs / test results.

     If the above is NOT in God's immediate will for us, then...

2. Daniel's blood counts (red, white, platelets, & hemoglobin) will return to higher levels quickly

3. That Daniel will NOT get any type of infection during the course of his treatment (while his immune system is compromised)

4. That the side-effect of the chemotherapy will be minimized (ravenous appetite, hair loss, immune system suppression, damage to internal organs & other tissues, etc.)

5. "Love, joy, peace, patience, goodness, kindness, gentleness, self-control" (you should recognize that list), along with strength, courage, faith, and hope for all us.

Current Issues:

6. Continued healing for Andrea’s cold and that the rest of the family will not catch it (Daniel, Tim, Dan, Sherry)

7.  That Andrea’s own side-effects from her chemotherapy (she gets hers daily in the form of a pill) will be minimized and that she will have the energy and positive attitude to continue to cope with all this and care for Daniel while I’m away at work or working on the house)

8. Daniel's appetite, cravings, etc. will be better controlled to minimize the weight gain and impacts to his digestive system and health.

9. That we will be able to get the house thoroughly cleaned back together in short order so that we can all get back home ASAP.

10. That my folks, who have been so gracious and patient with us will remain so, will have minimal impact to their own lives through our stay with them, and will be blessed powerfully by God for their gifts and grace toward us.

Grace and Peace to all

- Tim -

A Prayer Request

Tomorrow (Friday 1/20) is a big day for us.  Tomorrow, Daniel will have another bone marrow aspiration & biopsy that will be our first and perhaps most important "window" into whether the chemotherapy (and/or our trip to see Mr. Wickey) is having any effect on the cancer.  This is huge.  Even though it won't have any immediate effect on his treatment schedule, it will almost certainly tell us with certainty whether we can expect success or failure from the course that we're on.  Up until now, it's been a matter of statistics and probabilities based on OTHER people's cases.  Whether we were faced with 90% vs 10% or 60% vs 40%, all our information was based in probabilities.  Tomorrow, we'll find out whether we're in the 90% or the 10% and begin having conversations about what happens after the end of the first 29 days.  Will we be continuing with chemotherapy, or will we start talking about stem-cell therapy and bone marrow transplants?

It's already been a very long week with hour-by-hour, sometimes moment-by-moment struggles to "take every thought captive" and continue to keep my faith and trust where it belongs.  As I said in my earlier post titled "Trusting God in the Hard Times", I know what the ideal is, I just don't always have the discipline to keep myself there.  This week has been a real exercise in that regard.

So our requests are these:
Please pray that ...

1. Daniel's test results will show dramatic, positive results of the therapy so far.  If it's been working, there should be very low percentage of cancerous cells present in the marrow.  NONE would be ideal.  That is the goal for the next test two weeks after tomorrow anyway.

2. If it's possible by ANY of these tests to indicate that something has happened beyond even the ability of chemotherapy to produce (in other words, that he has been healed supernaturally), that these indications would be clear to all of us and bring glory directly to God.

3. Regardless of the results and their implications, that Daniel, Andrea, and I would remain focused on God's providence and trust in Him for the future.

4. We will be able to provide for all Daniel's needs during this time - including:

• Finishing the enormous amount of work that still needs to be done on the house in the next few days,
• Keeping up with financial impacts of all that's happened and all that is yet to come
• Keeping him protected from other diseases & infections during this time of extremely impaired immune system

Thank you all so very, very much for your prayers, your support, your words, and your many acts of kindness to our family over these past couple of weeks.  We can't imagine going through this without you.

- Tim -
 
P.S. I'm sorry I haven't posted more about how Daniel is doing.  He's actually doing pretty well.  His biggest complaint is backaches which we've been dealing with since the start of the osteoporosis. He still has frequent headaches, but they haven't been as bad.  He's very anemic and so tires easily but the steroids have increased his appetite 10-fold.  We're glad to see him eating again of course, but are now struggling a bit with keeping it healthy, and actually, keeping him from hurting himself!  He and Andrea are still at my folks' place as I try hard to get the house clean and back in order for us to return home ... hopefully this weekend (??)

Good News: The Roller-Coaster Continues

Reposting this from our Caring Bridge site for those that don't have access to it.


(Note: Please see our prayer requests at the end of this post.  I'll try to make these available regularly.  Thank you all for your prayers!)

Not long after we left Daniel's first outpatient appointment last Friday I received a voice message from the hospital that there was a change to his next appointment (this coming Friday). They had added a "procedure" which would require him to not have anything to eat after midnight, etc. etc.  Unfortunately, that was all they said (no word about what the procedure was or why the change in plans - grrrr). I suspected that they had put another bone marrow biopsy back in since that had been the original plan, but was removed early in the process.

By the time I was able to return the call, the office had closed.  I emailed, but received no replies over the weekend. (double grrrrr).  So Monday, I resent the email and finally received a call back from the doctor.  Yes it was indeed another bone marrow biopsy. She said the results wouldn't affect the treatment schedule for the first month (and there's another due at the end of the first month), but it would be a good "window" into how well he's responding to the chemotherapy.  I'm glad for the advanced look, but not at all happy for poor Daniel who had a harder time healing from the last one of these than he did from the surgery to install the port in his chest.

The doctor then went on to apologize for, in her words, "unnecessarily ruining our weekend".  It turns out that the genetics results that we got back last week were a bit misleading.  In fact, they were a LOT misleading.  On Friday we were told that the lab results had automatically placed Daniel in the "Very High Risk" category and lowered the chances of success from 90-95% down to 60%. It had absolutely crushed us.  It also prompted the visit to Solomon Wickey I wrote about last time.  What the doctors had THOUGHT the lab results were telling them was that Daniel had a fairly rare "gene translocation" which is where part of one chromosome "leg" breaks off and swaps places with another one.  We're familiar with this from Andrea's form of leukemia with the presence of what the call "the Philadelphia Gene" - a translocation of parts of chromosomes 9 & 22.  Daniel's was related to chromosome #8, but when present, indicates a much lower response to chemotherapy. 

However, after further discussions with the staff geneticist, the doctor had discovered that the anomaly was NOT the translocation they were worried about, but rather the presence of a third copy of the entire chromosome #8.  Normally, we all have a pair of each chromosome (23 pairs total) in each cell nucleus.  But in Daniel's case, he actually has an extra (3rd) copy of chromosome #8 in the cancerous white blood cells.  That's about all I know about it at the moment, but this extra chromosome is NOT an indicator of resistance to chemotherapy like the gene swapping issue is.

In other words, he is still in the "High Risk" category with a 90-95% chance of success where they had placed him at the beginning!!  Wooo hooo!!  :)

It was an honest mistake and after I did some research about it, I fully understand the mistake and don't blame the staff. Other than an extremely lousy weekend, it was "no harm, no foul".  In fact, I really see the hand of God at work in it, because it was a great (though extremely painful) heart-check for us to really get down to Who's in charge and how we, as a family, are prepared to deal with bad news.  I'd give myself a C or maybe C+; some work needed there.  But it also generated an awful lot of prayer, and that's always a good thing.

The hardest thing at this point is the roller-coaster ride.  I'm completely emotionally drained.  It was hard on Daniel as well.  Though we didn't share a lot with him, I did share that the news wasn't good and it made his type of leukemia harder to treat.  But clearly he could read our faces and was really down over the weekend as well.  I've been trying my best to get him to share his feelings and open up.  He doesn't do that well.

I find myself not nearly as joyful over this as I would have expected though.  Part of it is probably just being ready to get off this roller-coaster!  But I also know that none of the statistics really mean anything specific to our case.  A higher probability of success is great, but doesn't tell us anything about OUR situation.  What will do that is the result we get this Friday from the next bone marrow test.  It will give us a really good idea as to whether we're in the 90-95% or the 5-10%.  And frankly, I'm dreading it.

My deepest hope and prayer is that our trip to see Solomon Wickey over the weekend was in fact successful and we're really in a 99% category (barring any complications from on-going chemotherapy).  So far, I haven't had any such direct confirmation, but I do believe the "mistake" from the doctors was indeed a very positive "message" for us all - but not the confirmation (or denial) of full healing I've been looking for.  However, this Friday's test will really tell the tale.

SPECIFIC PRAYER REQUESTS:
On-Going:
Above all - that the lessons available to us all in this trial would not be lost or minimized, and that our wonderful God would be glorified through it all.
1. Full healing for Daniel and direct, clear confirmation to Dad - whether supernaturally, or through docs / test results.

     If the above is NOT in God's immediate will for us, then...

2. Daniel's blood counts (red, white, platelets, & hemoglobin) will remain high and even get up into the "normal" levels
3. That Daniel will NOT get any type of infection during the course of his treatment (while his immune system is compromised)
4. That the side-effect of the chemotherapy will be minimized (ravenous appetite, hair loss, immune system suppression, damage to internal organs & other tissues, etc.)
5. "Love, joy, peace, patience, goodness, kindness, gentleness, self-control" (you should recognize that list), along with strength, courage, faith, and hope for all us.

Current Issues:
6. That Andrea will quickly get rid of her cold, feel better, and the rest of the family will not catch it (Daniel, Tim, Dan, Sherry)
7. Daniel's bone marrow test on Friday will show very positive response (few or no cancer cells in the bone marrow)

Trusting God in the Hard Times

First - my apologies for a really long post.  These thoughts have been on my mind a lot recently and I've found that sharing them with others has often been fruitful in both my own life and theirs.  I capture them here in the hope that God can use them in yours as well.

Trusting God in the Hard Times

Given recent events in our lives, I thought I would capture a few things that God has been teaching me over these past few years.   In part, it’s because the writing process is helpful to me in reminding myself of these important truths, and it’s also in response to a number of folks who have asked or commented to the effect of wondering how we get through the dark times.

First let me say that this writing in NO WAY should communicate that I’ve got it figured out, that this is easy, or that I don’t fail miserably at this on a frequent basis.  Trials are hard; sometimes they seem impossibly hard.   But having discovered these simple truths from Scripture has been enormously helpful to us when times are at their darkest.  I’d like to share 3 of these truths that seem to cover the vast bulk of what I need to hear most when I fail to trust God.

UNDERSTANDING FEAR:

  The first truth is to recognize that Fear is a sin.  This was a shock to me when I discovered it.  I had always reckoned that fear was just a basic human emotion.  And by “fear” here, I mean anxiety about the future – worry – not the feeling you have when you suddenly notice the Mack truck about to flatten you if you don’t do something quick … that’s a good thing.   But fear of the future, or anxiety, is in fact sin.   Revelation lists “the fearful” (that group of people who characteristically exhibit fear / anxiety) in the same list as a number of other sins that we would immediately characterize as being among the worst sins humans could commit against God.

 He that overcometh shall inherit all things; and I will be his God, and he shall be my son.  But the fearful, and unbelieving, and the abominable, and murderers, and whoremongers, and sorcerers, and idolaters, and all liars, shall have their part in the lake which burneth with fire and brimstone: which is the second death. -- Revelation 21:8

Fear can be characterized as the opposite of Faith. He who fears the future does not trust that God is both Master of it, and has each of our best interests at heart.  Fear is born of Satan and he tempts and tests us with it regularly.  1 John 4:18 goes on to explain that “perfect love casts out all fear” and “He that feareth is not made perfect in love”.  It is no coincidence so many times when an angel appears to a human in Scripture, his first words are “Fear not!”  The Holy Spirit gives us the remedy to fear / anxiety in Philippians:

 “Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.” -- Phil 4:6-7

Recognizing that fear is a sin was a huge help to me in learning to overcome it.  I’m not there yet, but realizing that it’s NOT unavoidable and is in fact offensive to God is an important first step.

ON QUESTIONING GOD:

By “questioning” here, I do not mean asking God questions in general – seeking knowledge.  Rather, I mean questioning His motives, His trustworthiness, His character, etc. … what we so naturally find ourselves doing when He allows trials to come into our lives and we can’t see a “good” reason for them.  

I don’t know whether it is a natural response or a conditioned response to question the motives of others.  I suspect the latter as born of experience.  The more we travel in life, the more we are likely to be exposed to, if not “burned” by, the ill motives and self-centeredness of other human beings.  We naturally grow wary and sometimes distrustful of others and often quickly jump to distrust others’ character & motives when they cause pain in our lives – sometimes rightly, sometimes not.

While most Christians recognize that it is wrong to question the motives and character of God – simply because we’re told we shouldn’t and that God is always trustworthy, I find that few of my theology students really understand why it is actually IMPOSSIBLE for us to do so.

We must first recognize that “questioning God” is really a quasi-polite way of saying we don’t trust Him completely.  We believe it’s at least possible that He might do something unloving, unjust, or unfaithful in our lives or the lives of others and we’re wondering whether some particular event might be one of those times.   But there are several fallacies in this thinking:

First, we have forgotten His omniscience.  In order for we humans to believe that we can evaluate God’s actions in any way, we would first have to know everything He does; all the inputs, all the ramifications, all the potential outcomes, and all the available alternatives to the decision He has made.  Clearly, we do not.  He does.

Second, we have forgotten His “eternality” an attribute of God’s nature that means He exists outside the confines of time itself.  God created time and space, but He is subject to neither.  He has seen all things – past, present, and future to our current location in time.  He knows the outcome of all actions – not because He’s really good at predicting the future, but because He is already there!  This is related to His omnipresence (He exists everywhere at once).  He is present at all points in the universe (space), but also all points in time!  This is pretty difficult to get our limited heads around, but that’s precisely the point here.  We are in no position to render judgment against God’s actions until we are as knowledgeable, powerful, and eternal as He is.

Third, we mistakenly think that the concepts of right & wrong, or good & evil exist apart from God.  We like to imagine that “right” and “wrong” exist independently in the universe as a self-existent standard of morality, and that we can hold God’s actions up against this standard and decide for ourselves whether His actions “measure up” against this standard.  But in truth, no such independent standard exists.  Where would it have come from?  Who would have created it?  No.  Rather, God Himself IS THE STANDARD.  What God does is, by definition, right and good and holy and just and loving and perfectly in keeping with all His moral attributes.  To attempt to hold God up against any standard can only result in judging the value of the standard itself, not God.  

So we must recognize that God is God and we are not.  He is the Potter and we are nothing more than the clay.  Not only does He have every right to do as He wills with us, but in fact, God CANNOT do anything with us that is not good and loving and holy and just and in keeping with all His attributes.  If God does it, then it is, by definition, GOOD.  If it doesn’t seem to match up to our own perceived standard, then clearly the standard we're using is the problem – not God.  This doesn’t make it any easier to understand why God does some of the things He does, it only means that to question His motives is foolishness and only points to our own ignorance and arrogance.

GAINING AN ETERNAL PERSPECTIVE:

This is actually a pretty big topic, but I’ll try to summarize it here.  One of the misconceptions that most Christians are under is the idea that we will be spending the rest of forever in Heaven singing Amazing Grace and playing harps around the golden gates.  But this is not the Biblical picture of the future.  The destiny of Man has always been to fill the Earth. This is the purpose for which the Earth and ultimately the Universe was created.  This Creation has been damaged by sin and will be burned up and “resurrected” as a “New Heavens” and “New Earth” after the Millennium.  This new Heaven and Earth is our ultimate destiny and the fulfillment of God’s plan of grace toward us who believe … it is the completion of our “Great Hope”.  And like the original Garden of Eden, we will have work to do!  (Sorry if that's a disappointment. :)  We are told that we will reign with Christ as kings and priests, that we will be administrators in this new Earth, and be rewarded with rank and privilege in accordance with how we have trusted Christ and what trials we have endured and overcome.  These positions of leadership will require character and integrity – people of honor, and faith, and all the Fruits of the Spirit.  In order for us to adequately fill these positions, it is imperative that we allow God to shape our character NOW into what He has designed us to be such that we can fill those job descriptions with honor for our King.

This view of our final destination helps us better understand the purpose of this life then.  We too often see this world and this life as the whole shebang.  And the idea of spending this life mired down in pain, suffering, trials, and pretty much anything other than lots of fun, health, and leisure time just seems horribly sad to us.  We spend our energy, money, and time trying to make things fun, entertaining, and enjoyable for ourselves and our loved ones in this life.  But in fact, that is not the purpose of this life.  This is Boot Camp … Basic Training … a Basic CHARACTER Shaping Class designed to prepare us for the next several trillion years to come in the service of Christ.  And though I believe that God always gives us the opportunity to learn the lessons He has for us the “easy way” – the fact is, we rarely do.  The most lasting lessons are the ones that cost us the most and are test us to our core.  Having all those rough edges shaved and shaped hurts.  We love our flesh, and having it denied, torn away, or pummeled into submission is not a pleasant experience.  But the more we submit to God’s shaping and refining in this life, the more glorifying we will be to Him both in this life and in the ages to come.  

We MUST learn to see this life in proper perspective … in the light of eternity and all that is to come after this.  We must recognize our natural short-sightedness and keep the eternal before us.  When our Father allows trials to come into our lives, there is always something to be learned, an opportunity to grow.  He is after something new and good and of eternal significance in our character and experience.  The sooner we get that, and let Him have His way, the sooner we’ll be done with that lesson.  But that doesn’t mean the next one will be easier – probably the opposite.  Yet there is joy in the journey. When we allow Him to shape and grow our faith and trust in Him, we find peace and joy and love even in the “Valley of the Shadow of Death”.  And that kind of strength will go with us into eternity.  With those lessons, we will bring glory to our Master, and honor to our brothers and sisters in Christ.  This is not easy.  It’s hard.  It’s painful.  It’s gut wrenching at times.  But in it is goodness, and growth and lasting strength, endurance, and character.

A hundred, or a thousand, or a billion years from now, we will look back upon these events and see only their eternal significance, not the momentary pain we endured to obtain them.  Undoubtedly, we will all wish we’d let God bring us farther and been less complaining and petulant along the way.

I have found this viewpoint to be the most beneficial of anything else in theology for understanding and enduring the tests that the Lord allows to come my way.  It doesn’t mean I’m always appreciative or even remember the points I’m talking about here.  I’ve certainly shed my share of tears and cried out in anger toward God.  But like any loving Father, He forgives me, loves me, and gently encourages me forward.  And in the end, these principles eventually come back to mind and help me process.  I hope they help you too.

Grace and Peace;

- Tim -

Alternative Avenues of Hope (Reposted from Caring Bridge)

I'm re-posting this entry from our Caring Bridge website for those without access.  My apologies for the Caring Bridge site making you log in.  I've tried to set the security settings such that you don't have to do this, but something appears broken on their end.  This was posted last night.

- Tim - 

Sunday, January 15, 2012 8:05 PM, EST

written by Tim Miller

Alternative Avenues of Hope

Sorry I haven't updated the journal in a couple days. It's been a busy and eventful weekend - the emotional roller-coaster continues...

Through some mutual friends, I've recently been introduced to the Amish community and frankly, been impressed with the people I've met.  I've also heard stories that are not so good but I figure, like any other time there are humans involved, you meet all sorts and you can't judge the whole by a few isolated experiences.

In this case, I was introduced to a family who is very well known within the Amish community as a healer ... kind of the Amish equivalent to a doctor, but with a far more naturalistic or "holistic" approach.  As many of you had already guessed from my few and cryptic Facebook posts, the man's name is Solomon Wickey and he lives in far north eastern Indiana near Auburn.  I didn't know much about Solomon until a good friend of mine met his son and later met Solomon and began telling me some pretty amazing stories about this man who's been healing people of pretty much everything people can have wrong with them for over 30 years.  I believe he is 73 years old now, but still seeing literally thousands and thousands of people each year at a little office constructed next to his house on the family farm.  He is reputed to have the highest rate of recovery of cancer patients of any individual or institution inside or outside the traditional medical community.  The figure I heard was 98% but I don't really know where that comes from.  I'm told that many oncologists send their patients to him on a regular basis.  His son, who worked in the "clinic" for 5 years when he was younger, told us stories about doctors themselves coming to see Solomon, but almost always after regular business hours or after dark.

People have HUGELY different opinions about Mr. Wickey and what he does but a book that was written about him (you can find it on Amazon) tells the story of how, when a court case was brought against him for supposedly practicing medicine without a license, the courtroom was filled every day with hundreds of people who had been healed by him there to testify on his behalf.  The case was eventually thrown out of court as I understand it, though he was ordered to make some changes in how he dealt with the people who came to see him.  I don't know about you, but regardless of what he does, that boils my blood.  But I won't get started on that now.

Through Solomon's son, we received permission to come see him on a Saturday (not normally a time when he sees people) and I jumped at the chance.  Regardless of what I thought might happen, I wouldn't have been able to live with myself if I didn't TRY every means at my disposal to help my son.  I resolved to take Daniel to see him, see what he did and said, and then make up my own mind about any results or recommendations from him.

I was also pretty sure that I was the one who was going to have the hardest time dealing with whatever happened.  If he said he couldn't do anything, I'd be right back where I started from with even fewer options in a dismal situation.  If he told me Daniel was healed and should stop chemotherapy, I was going to be faced with some enormously difficult decisions as to whether to follow any such advice and how to handle the doctors that would be convinced I was killing my son.

To skip to the end, the latter is exactly what happened.  Mr. Wickey examined all 3 of us, "tested" Daniel in his own peculiar way, examined his eyes in a practice called "iridology", prayed for him, and pronounced him "released" from leukemia the same way he has many thousands of others.  The whole thing was over in about 5 minutes and I found myself struggling to ask some intelligent questions about what to expect, how we should proceed etc.  He said it would take about 4 months for Daniel to return completely to "normal" in his blood counts and to escape the effects of the chemotherapy he'd already received.  He recommended a couple of herbal supplements that would help the body rid itself of the toxins faster.  And then we were on our way back home.

Now, as anticipated, I'm faced with the decision of what to do with this experience and how, if at all, to alter anything in Daniel's on-going medical care.  I am fully aware that if I make a wrong decision, it could easily mean Daniel's life.

Unfortunately, due to the nature of the disease, and due to the fact that Solomon indicated it would still take about 4 months for Daniel's body to return to normal, I pretty strongly believe that there exists no way for the medical community to validate Solomon's claim of complete healing.  But I'm intending to ask the doctors ... not to believe in any of this ... but simply IF such a thing had actually happened, would there be any way for them to verify it?  Now THAT should be an interesting conversation if nothing else. :)

Now before I get barraged with several hundred different opinions as to Solomon's efficacy or what I should do, let me explain how I have resolved to proceed.  First, I have no intention of taking Daniel out of the care of what is considered to be one of, if not THE, best children's hospital in the world without powerful evidence that their care is truly no longer needed.  That evidence could come by way of their own medical confirmation of Solomon's results, or it could come directly from God ... which is actually what I'm expecting to be the only avenue possible.

I figure that if God has stepped into our family supernaturally through Solomon Wickey, or any other way, and healed my son and wife of cancer to the effect that we can take one or both of them off chemotherapy, then He's fully capable of confirming that action to me as the head of my family and the one accountable to Him for their well being. So at this point, I am actively, seeking God's confirmation to me of what He has done and any changes in our path forward.  We all covet your prayers for discernment and wisdom as we seek our Father's guidance on the path forward.

The way I see it, the worst that could happen if I take Daniel off the chemotherapy is, quite bluntly, that he could die.  Even if we detect his condition deteriorating again, it may be too late to restart the therapy effectively.  On the other hand, the worst that could happen if Daniel has been healed and I leave him on the chemotherapy, then we have unnecessarily subjected him to a horrendous trial of pain and suffering, but most likely one that won't kill him.  We just have a much, MUCH higher probability of success.  So without a solid confirmation directly from my Heavenly Father Himself, I intend to stay the course. 

Now with that said, I truly desperately want to hear that God has in fact returned my son to me wholly healed and have no need to continue down this dismal path.  I have been fasting and praying this weekend and will continue to do so earnestly seeking a word from my Lord.

- Tim -

Friday the 13th: Another Very Bad Day

I'm reposting here for those that aren't members on the Caring Bridge site yet or don't want to be.  We encourage you to sign up there though as it is free, they don't bother you, and most of our info will be posted there.  http://www.caringbridge.org/visit/danieljmiller

Friday the 13th: Another Very Bad Day:

We're back at Riley again this morning for Daniel's first chemo treatment as an outpatient in what will become our regular Friday routine for awhile.  He was very apprehensive about his first "port access" since it's still sore and pretty sensitive.  In the end it was a non-issue though and he's doing well.

Andrea and I however are not.

When Daniel was first diagnosed with Leukemia, the doctors thought it was AML, a type that is more difficult to treat and has only a 60% success rate.  By that evening however, we were ecstatic to learn that it was in fact ALL which has a much higher 90-95% success rate.  The exact details though would be dependent on a final set of lab results that would be a few days.  So we've been waiting on those final results all week.  They would tell us whether certain genetic markers were present in the cancer cells that would move him from the “High Risk” category to the “Very High Risk”.  This would affect the treatment.  Well this morning we got the news that he does have these fairly rare markers and is in fact in the “Very High Risk” category.  What we were not aware of was that this also significantly reduces the chances of success for his treatment.  In fact, it puts us all the way back down to the same level as if he’d had AML to begin with … from 90-95% down to 60%.

 
The world crashed in around us again this morning as we got this news.  The doctor said that the most important next piece of information will come at the end of his first month of treatment when he gets the 2nd bone marrow biopsy.  This will tell us how he’s responding to the treatment and give us the best clue as to what to expect from the months to come.  No changes to the treatment will even show up until after that.
 
For right now, we’re obviously in shock and very, VERY upset over this news.  We appreciate your continued prayers more than anything else.  It doesn’t change anything we’re doing or put him at any higher risk of infection etc.  But we’re likely to be all the more cautious about everything at this point.  Thank you for your prayers.

At the moment, he’s just finished his spinal tap and in recovery.  We’ll be getting something to eat as soon as he’s up to it and then we’ll be waiting to hear the lab results from the spinal fluid.  Hopefully, everything remains clear in that regard.

More soon.

New Caring Bridge Website for Daniel

Friends and Family;

WE'VE MOVED! I've created a new Caring Bridge website to provide updates about Daniel moving forward. This was done in order to allow other family members to make updates and easier access to other people. New posts will still appear in links on Facebook as well.

Be sure to sign our guestbook as well as leave any comments you like on the posts there. The address is http://www.caringbridge.org/visit/danieljmiller

I've copied the previous blog entries as well as a new one from today in the "Journal" area. We love to read your comments and, as always, thank you for your prayers and support. They are our lifeline right now.

- Tim -

Daniel's Diagnosis: Day 3 - Indescribable Blessings, Sun 1/8/12

What an incredible day this has been. After a very late set of decision making last night, we put the word out that we'd decided to tear the old scary carpet out of the bottom floor of our house and try to seal the subfloor before Daniel was released to come home. We'd been meaning to tear the horrible stuff out for years but had not yet saved enough money for the hardwood floors we wanted to replace them with. In recent months however, I was beginning to worry that they were actually becoming a health concern for us and I was going to have to do something about them whether we could afford them or not. When the doctors told us how severely compromised we could expect Daniel's immune system to become during the chemotherapy, and then added that the worst fear was that of a fungal infection, I knew I couldn't wait another moment if we ever hoped to feel comfortable with bringing Daniel back home. I also realized that today was the only remaining weekend day available to ask for help from my friends. So late last night I posted a request on Facebook for anyone who might be available to help me today to show up at the house at 12:30 (and then later pushed it back to 1:00).

By this morning, I'd had several friends tell me they couldn't make it and about 3 people tell me they thought they could be there. By the time my wonderful folks showed up to watch Daniel for us on only an hour's notice and my poor brother found his way through the disaster of construction around the hospital downtown I was able to get back home by about 1:10. As I approached my house, the sight was absolutely overwhelming. Not only was the driveway and shoulder of the road in front of my house filled with cars, but the entire front yard was a parking lot. I couldn't believe it. I parked in front of my neighbor's house and walked in the side door. As I opened the door to the house I quickly discovered two things: First my house was jam packed with people - PACKED with people - and second, all the carpet, padding, and tack strips were already gone in all but about 1/2 of one room of the first floor. I'm not sure when everyone got there, but even if they came at the original time, what they'd accomplished was nothing short of astonishing. They had moved all the furniture, pulled up carpet, pad, and tack strips, and were now working on pulling the last of the staples and vacuuming up the dust. The Family Room, hall way, foyer, and half the living room were done.

I had figured that we'd have to do the Living Room another day because I'd still have to buy the sealer, put it down in the cleared room, wait for it to dry, and then move all the furniture into that room so I could attack the other. But these guys had figured out how to get all that furniture into 1/2 of the Living room, pull up the carpet in the other 1/2, and then switch. By the time I even figured out who was even there, they finished everything. One of my friends who had gotten there first was asking if they could start putting the sealer down ... you know ... the sealer I hadn't even bought yet. So we jumped in the truck and took off to go find sealer. During the course of our trip, another friend called me and made me aware of a place where I could get a good product at wholesale price, so off we went there. God was providing for each step of the way, almost real-time. Before I walked out the door, two of the gals there were explaining to me that they were going out to buy pizza for all these workers and that I wasn't allowed to pay for any of it.

By the time we got back with the sealer (the stuff that I'd thought was going to be too expensive, but turned out to be well within budget), most of the crew had eaten and left. The job was nearly completely finished. Some folks asked about removing the carpet on the main stairway as well (which I hadn't even considered) and volunteered to stay around and complete that too. It was done in no-time and off they went as well telling me to let them know of any other assistance I might need. One friend whom I haven't seen in a dozen years or more drove 3 hours to help today after simply reading a Facebook post. He had to call relatives to even get our phone number & address. But he was there & was last one to leave.

How awesome is our God, and how absolutely are the hearts and hands of our faithful brothers and sisters willing to give of themselves in service to even a need so small as ours. Neither these words nor my tears earlier today can express the love, thankfulness, and blessedness that we feel at being surrounded by so many true friends. Nevertheless, THANK YOU ALL from the bottom of our hearts.

Oh and by the way - where did y'all put the white trash can from the Kitchen? :-)

May your kindness and blessing be restored to each of you 7-fold.

Grace and Peace in Christ Jesus,

- Tim -

Daniel's Diagnosis: Day 2

This morning was hard.

Not having gotten much sleep last night certainly didn't help. Between the constant intrusions by the nurses and my own rampaging thoughts, it was a restless night. I was awakened by the anesthesiologist coming to inform me that Daniel had been scheduled for surgery at 10a - much earlier than we anticipated. I guess it was good news, but right away Andrea needed to rush to get back down here to Riley before he went in. She did with plenty of time to spare. Daniel was nervous and irritable from the start and certainly understandably so. He was (and still is) in a lot more pain than expected from the bone marrow biopsy yesterday. But the procedure itself didn't go well and they had to go back in 2 or 3 times with two different doctors taking a turn at drilling into his pelvis before they finally got what they needed ... probably the reason I had to leave the room ... twice.

Though nearly 10 years ago now, I can vividly recall the first time I took him to the pediatrician to get an immunization. I had mixed emotions about the immunizations anyway and wasn't at all sure I wanted to do it. I will never forget the look in his eyes at that moment when I placed him on the table and the nurse stuck him in the thigh with a needle for the first time in his life. There was several seconds pause while his little brain processed what had just happened to him and then he looked straight at me as if to say, "I trusted you! How could you!?" and I instantly burst into tears myself and was upset for the rest of the day. Actually, I'm still upset about that.

So the act of helping push his gurney down to the OR this morning and handing him over to a doctor that was going to put a subcutaneous pin cushion into him so he could begin what (I hope) will be the worst experience of his life over the coming months. I saw that same look in his eyes as I tried to calm him, tell him I loved him, and that this was all for the best. As my own tears came again, the doctors and nurses swore several times that they'd take good care of him. They could see it in my eyes as well as his. His mother and I prayed for him, kissed him, wished him luck and promised to see him shortly, and then I went to the men's room and cried again.

Things got better from there though. After forcing down a few bites for lunch, we began meeting friends and family members in what became a steady stream of visitors throughout the day. It was good for all of us. I was shortly met by the doctor who performed the port placement who told me everything went great and that the following spinal tap should only take another 30-40 minutes. I very good friend of mine showed up followed shortly by my parents, and the recovery room team let all 5 of us come to his bedside as he woke up. I was there when he opened his eyes and was able to hold his hand as he gradually came to with mom beside me. He began complaining of pain in his chest and was given a small dose of morphine. It did the trick, but only lasted about 5 minutes. We rolled him back up to the room and tried to make him comfortable, but he was complaining quite a bit about his chest and hip.

Then his friends began to show up and almost miraculously, I didn't hear another complaint about pain from him for, literally, the rest of the day. I said to several people that having his friends around was clearly a better pain medicine even than morphine! We found another set of remotes for his Wii console, and he spent the rest of the afternoon playing LEGO Star Wars III and once again, the Daniel I know as my son. Thank you Lord for that gift to all of us. Thank you to our friends who were able to come by, and thank you to our many MANY friends who sent their love to us via Facebook, email, text & voice messages, and most important of all - via prayer.

As I sit here now trying to summarize this day, we've been informed by the nurse that she'll be coming in every 2 hours to wake up Daniel to pee so that his now-caustic urine doesn't breakdown his skin if it touches it. Another long night ahead. He slept for awhile, but after taking the first round of steroids and some Tylenol for his 104deg fever, he's now wide awake & watching Braveheart ... seems appropriate enough in facing the battle ahead. We're obviously hoping for a different outcome though. :)

One last positive note: we did receive word that the tests of his spinal fluid from the tap this morning came back negative ... no leukemia in the spinal sheath. That was wonderful news to hear as well. Thank you Lord for each little piece of good news along the way, and thank you prayer warriors for keeping us surrounded with the presence, peace, love, and hope of Jesus.

- Tim -

Jan 6, 2012 - A Date of Infamy

January 6th, 2012 - a date that will truly live in infamy for the Millers. Today has been one of those not-rare-enough, horrendous days when your entire life comes to a halt as everything crashes down around you and you're left with nothing but your faith to to provide enough strength to take another step. Twenty six years ago this month, my mother was taken by cancer after a long and ugly battle.  Two years ago, Andrea was diagnosed with chronic leukemia (CML).  And today, my son Daniel was diagnosed with acute leukemia (ALL) as well.  It's hard to breathe let alone think.

The small light in today's news was that the leukemia is in fact A.L.L. type which has a much higher success rate than the type that was originally suspected (A.M.L.). Still, it's acute leukemia and will require full-blown chemo-therapy to my precious little boy. I feel like I might have some inkling of what Abraham felt when he heard the words of Genesis 22:2: "Then He said, Take now your son, your only son Isaac, whom you love, and go to the land of Moriah, and offer him there as a burnt offering on one of the mountains of which I shall tell you." I've heard God ask me a number of times recently if I could have trusted Him through such a command. I will probably never know for certain (I hope) how I would respond to a command to take my son's life by my own hand. But the idea of trusting God entirely and completely with my son's life is nevertheless at hand.

For the uninitiated, A.L.L. is "Acute Lymphoblastic Leukemia". Of the acute forms of leukemia it is the the most treatable. Typically, there is a 90-95% success rate, but the path to the cure is nothing short of horrible. Leukemia is a disease of the blood, specifically the bone marrow. In this case, white blood cells are affected, and abnormal cells begin reproducing uncontrolled in such a way that they completely overtake the marrow and "crowd out" the healthy cells of all three types (red, white, and platelets). The "cure" (chemotherapy) is actually to poison ALL fast-growing cells within the body in an attempt to rid the body of all the bad cells. Unfortunately, it kills the good ones as well as the bad ones, along with other types of good fast growing cells in the body - such as hair follicles and the lining of the entire G.I. tract. During the "therapy", the immune system is pretty much completely destroyed. While red cells and platelets can be replaced via transfusions, white cells cannot. This leaves the patient extremely susceptible to infections during the treatment. The worst possible type of infection, the doctor tells us, would be fungal because they are the most resistant to treatment anyway.

Unfortunately, Andrea and I have both had concerns about our house in recent months and have been planning to rip up the carpets and possibly sub-flooring to deal with potential mold concerns anyway. We're really not sure how we're going to deal with this right now - but putting everyone up in a hotel for the next several months doesn't seem very practical (much less affordable). Please pray for wisdom along these lines for us.

Treatment begins tomorrow (Sat 1/7/2012). In the morning he will have surgery to install a "port" which will make the myriad of injections over the coming months less painful (or likely to destroy his veins). While he's under, they will also perform a spinal tap to inject chemotherapy drugs into his spinal sheath and draw out a sample of fluid for further analysis. This port will lie just under the skin of his chest and provide an injection access point to put chemicals directly into a major vein beneath his collar bone.

In the afternoon, they'll use this new port for the first round of chemotherapy injections beginning an intensive 28 day "1st month". The goal is to have him completely cancer free by the end of that first month. But it will be another 3 years or so to complete the full round of treatments. The details of everything after the first month will depend on more tests that we are expecting results from sometime next week.

As I said at the start, it's been a horrible day for all of us. Daniel took it hard himself, partly because he has a friend who has been undergoing chemotherapy himself for brain cancer, and Daniel has seen the effects first hand. Obviously, it's a little different situation, but chemotherapy is chemotherapy, and it sucks no matter how you cut it. His mother and I are still in shock. We have barely even begun to talk about what this means or how we will deal with it. But clearly, life has come to a stop for now and "normal" has been turned on its head for quite awhile at best. I can't even bear to think about less-than-best cases right now. We'll take it one step at a time. We'll trust in our wonderful Heavenly Father Whom we know is in complete control. And we will cling to Rom 8:28 for dear life.

Thank you all for your thoughts and prayers. We will lean on them heavily in the coming months.

- Tim -