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.

Final Hospital Admission?

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

As I write this, Andrea and Daniel are heading out the driveway on the way back to the hospital.  If his blood counts are good enough, he'll be admitted for his fourth & last PLANNED hospital admission and the end of this phase of chemotherapy ("Interim Maintenance").  I'll join them a bit later today after getting some things done around the house, and will be spending most of the weekend and the next couple nights in the room with Daniel.

As with the previous admissions, he'll get a rather large dose of a drug called Methotrexate through an IV over the next 24hrs.  We then take blood samples every 6 to 12 hrs to see how it's clearing.  Once it's below a certain point, he's allowed to go home.  But due to the nasty nature of the drug and the potential of his body not clearing it (kidneys shutting down, etc.) they have to watch him constantly while its in his system.  If all goes well, we should be back home Monday or Tues.

Daniel was pretty upset about today's admission last night and was even in tears at one point.  Despite the fact that there's no spinal tap procedure this time around, he HATES anything to do with the hospital or doctors anymore. Who can blame him?  I read Daniel 3 to him and prayed with him and he fell fast asleep.  This morning he seemed in good spirits, but that can change in an instant if he lets himself start thinking too much about it.

When I questioned him about it last night, he said he was worried about the NEXT phase.  Frankly, that one worries me too.  We get a week off in between, but the name of it is "Delayed Intensification" if that tells you anything.  The nurses have said (in front of him) that even though his hair has been coming back in well, this is the phase that often will knock it completely out. That's a big deal for him and we're praying that it doesn't happen.  It'll be another 2 months of weekly outpatient clinic visits with LOTS of drugs being pumped into him.  Then, finally, we'll get to the "Maintenance" phase that will continue for another 3 years with monthly visits, lots more spinals (28 of them I count), more steroids, and just more stuff than any of us wants to think about. 

If all goes according to schedule, today is day T-1039 (counting down). It was pretty depressing this past week when I put together a day-by-day schedule for the rest of his treatment plan.  Seeing how many more times he'll be given each type of drug (28 spinal injections, 180 more days of steroids, 1000 days of Mercaptopurine, etc.) - wow. 

As much as we'd like to think it's all smooth sailing after we get through this next intense phase, well, it's not.  It's gonna be 3 more years of cancer, chemo hell for Daniel. "Normal" will change a bit from what it is now, but not that much.  What will however remain the same is our Rock, our Comforter, our Ever Present Help in Trouble, our Fourth Man in the fiery furnace. 

Other than the obvious, my SECOND most important on-going prayer is that this opportunity will not be wasted.  It's SO EASY to want to forget about everything, to just kind of go into denial on the good days and forget about it all.  And there's nothing wrong with that. In many ways, it's necessary and healthy.  Unfortunately, it's also all too easy to lump God in with that process.  In so many ways, God and prayer, and leaning on Him has become almost synonymous with cancer and hosptials and chemotherapy through these past 7 months.  We've spent so much time in prayer and petition to God as part of the cancer trial, that on the good days, it's far too easy to want to forget about HIM for awhile too.  It's awful, it's wrong, it's stupid, but we're fighting against our own mind-games and defense mechanisms here.

What I really, REALLY want is for all of us, but especially Daniel, to draw close to our Father - to learn to see Him as a Best Friend; Someone to draw close to in both the hard and the joyful times - to see the MANY sides of His personality and love and character through the truly amazing variety of experiences that have already and continue to come our way during these 3 years.  But it's largely up to me to model that, to help Daniel process all that happens, to help him make this a learning and growing experience. Despite the horrible nature of these events, I'm also convinced it can be, and is INTENDED to be, an amazing and powerful classroom of opportunity for all 3 of us.  Heavenly Father, PLEASE don't let me waste this opportunity!

Thank you, everyone, for your continued prayers, support, and kind messages.  Please know for certain that we read and appreciate every single one and they have a powerful effect on us all.

Grace and peace.

A 3rd Try for Treatment Tomorrow

We're preparing tonight for the 3rd attempt at getting Daniel into the hospital for his next round of chemotherapy tomorrow morning.  This phase is dependent on his white blood cell counts being above a certain level before they'll give him the treatment. The past 2 times, they haven't been high enough (in fact last time was the lowest they'd been in awhile).  He's been very active lately and being around a lot more people that I'm comfortable with (any exposure to germs can drop his counts further as he's much more susceptible to infections now) - but that's also really been good for his morale and getting some badly-needed exercise and sunshine.  So it's a mixed bag and I've been a lot more "lenient" on letting him do things because I know the psychological side (as well as the exercise itself) may well outweigh the risk of keeping him protected.  But as you might imagine, with what's at stake here, I tend to be a little over-protective of our "only begotten son"!

Tomorrow, we'll find out whether I've been too lenient.  It's rather ironic that "good news" in this case will result in admission to the hospital, a spinal tap, and a 24-hr dose of extremely toxic drugs into him that warrant 24hr surveillance until they're completely eliminated from his body.  But at this point, we just want to get through this - and even more so - the next phase.  The next one is actually the one that worries me the most.  It's referred to as "delayed intensification" and as the name implies, it's another very intensive 2-months of chemo.  His hair has been starting to come back in, his energy is up, he's slowly rebuilding some strength and stamina, but that phase is very likely to knock him back down several rungs again.  He's been unusually lucky (ahem) thus far to have not lost all his hair.  I believe it's a direct answer to prayer ... one of those "little things" that God has been pleased to grant him through this trial.  That was a big deal for him, and he's been really happy to have not had to shave it completely.  But we're warned that the next phase may break our "streak" and result in him losing what he has left.  We'll see ... and continue to pray for that little blessing to continue.

Through it all, God has been wonderful to us.  We've had every need met, been surrounded by the best doctors, friends, and family, and been learning a lot about trusting God with the big things as well as the small things.  Yet despite how well things appear to be going right now, it's never far from out minds how quickly it could all turn south.  Through this experience, we've been surrounded by so many, MANY others who are traveling similar roads.  Many we've met cause us to realize just how blessed and how "easy" our road has been thus far.  I've learned a LOT about strength, sacrifice, endurance, the need and power of prayer, and the value of Christian community.  Most of what I've learned is how far short I fall in these areas compared to the amazing people that God has brought into our lives.  It is my fervent prayer that all of us will forever be changed by these lessons and that they will ever be as fresh as they are now.

Those who have come alongside us during this time - helping with projects at the house, preparing meals, helping Andrea with cleaning, shopping, helping us financially with house renovations and medical bills, watching Daniel, even staying with him over night at the hospital so that Andrea and I could get some much needed rest - the generosity and self-sacrifice of so many around has been staggering ... unimaginable.  We will NEVER be able to fully express our appreciation to those who have helped in these and so many other ways.  And as I've said so many times before, with total honesty, the help that I covet the most from people is not with finances, or swinging hammers, or watching Daniel (though again, we're incredibly grateful for all these), but rather with prayer.  I can tell you with absolute certainty that, during those sudden trips to the emergency room at 2am, or bad news from the doctors hitting us like a freight train, there's no amount of money that can hold a candle to 20 or 30 people commenting on a Facebook post that they are praying and have their family or churches praying for us too.  We can feel those prayers like a warm blanket around us as the Holy Spirit draws us close and reminds us that He is in control and that those prayers go up before Him like a "sweet aroma" petitioning for the life and health of our son and our family.

Thank you.  Deep, heart-felt, eternal, and profound thanks to each one of you who have been a part of our journey through some sacrifice of your own - even just a minute or two in prayer.  Thank you, and may our Lord multiply your generosity back to you many-fold and many times.

For those who ask for our prayer requests they are few and simple right now:
1) That IF it be the Lord's will and timing tomorrow, that Daniel's blood counts will allow us to move forward with his treatment in the morning,
2) That it will go well - no mistakes, no adverse reactions or side effects, etc.,
3) That the drug will do it's job and be eliminated from his body quickly so we can all go back home, ultimately, moving always toward complete healing and health,
4) That we will be a witness for our loving Father and continue to grow and learn through all this - especially Daniel, and as always,
5) That God would be glorified in all this.

Grace and peace to you all,

- Tim -

Reflections on D-Day

Welcome to the 68^th anniversary of “D-Day”!  On this day in 1944, about 176,000 allied troops stormed the coasts of Normandy France in the largest amphibious invasion of all time as the Allied forces invaded mainland Europe in WW-II.

World War II began in the German invasion of Poland in 1939.  France had been under German control since its invasion began in May of 1940, ending only a month later.  The entry of the U.S. after the Pearl Harbor attack at the end of 1941 made it a true World War.  Now, nearly 5 years after its beginning and nearly 2 ½ years of round-the-clock bombing campaigns, allied forces were at last entering mainland Europe.  

In the very early morning hours of June 6, about 18,000 parachute and glider troops were dropped behind enemy lines.  At dawn, supported by over 11,000 aircraft, about 6000 ships and landing craft carried troops, armor, and supplies toward the shores of France.  The landing areas had been divided into code-named areas: Utah, Omaha, Gold, Juno, and Sword.  Resistance was encountered at all the locations, but by far the worst was at Omaha beach where over 2000 casualties were sustained during the morning hours.  Total Allied casualties for this one day are estimated at over 10,000, including over 6600 Americans.  

Within 5 days (D+5), over 326,000 troops, 54,000 vehicles, and 104,000 tons of supplies had been landed on the continent and in less than a year, Hitler would be dead and the war in Europe over.  The formal surrender was signed on May 8th inaugurating "VE Day" (Victory in Europe).

If you can make time today or in the near future, the recent movies "Saving Private Ryan" and "Band of Brothers" do an excellent job of commemorating these events and giving at least some inkling of what took place that morning.   Let us remember … and teach our children to remember this day:  the courage, the sacrifices, the resolve, and the evil which made it necessary – lest we learn nothing from these awesome and awful events of history.

http://www.dday.org/

http://www.army.mil/d-day/

http://en.wikipedia.org/wiki/Allied_invasion_of_Normandy

- Tim -

Delayed Again. :(

Just a quick update to say that Daniel's blood counts were again too low to admit him for the scheduled chemotherapy this weekend.  So they're heading home.  Very frustrating.  He's quite happy, but obviously we're not avoiding anything. We'll still have to go through it all, just dragging it out farther into the Fall & Winter with each delay.