A Mixed Bag

Mirrored on our CaringBridge site here: http://www.caringbridge.org/visit/danieljmiller/journal


After a week's delay to the start of our last intensive phase (next comes "maintenance"), today Daniel's blood counts were high enough to start the "Delayed Intensification" phase.  We've been looking forward to this one with mixed emotions.  It has all the promise of indeed being intense, but we're also looking forward to getting to the other end of it.  There will be nothing easy about the next 3 years, but it will definitely be better than what we're facing for the next 2 months.

Today started with the "good" news of decent blood counts and being able to start phase IV, but has pretty much gone downhill from there.  Forgive me if this sounds like "venting", but that's what it is. It's been a tough day and I feel like sharing.  Sorry to make you the beneficiaries, but think of it as a rolling prayer request. ha ha.

As I write this, Daniel has thrown up all his dinner and is now fighting the dry heaves.  I think it's the extra heavy does of anesthetic he got, but not really sure.  Could also be any of the three chemo drugs he got along with it.

During the spinal tap procedure they had trouble getting him completely "out".  This has happened before and they just keep pumping the anesthesia into him until he goes out.  But once he was finally out (the procedure itself went fairly smoothly) his heart rate & blood pressure dropped dangerously low.  There was some concern for awhile, but he came back on his own and other than a little nausea, was doing fine and filling me in on all the components he needed to get in "Monster Hunter" (his favorite Wii game) to get to the next level.

I had gone into work this morning and was waiting for confirmation that his blood counts were a "go" before leaving for the hospital.  Unfortunately, they were WAY late in getting the blood drawn and by the time I got word that we were g2g - I had to FLY down to the hospital to get there in time.  By the time I got there, he was already in the O.R., prepped, and ready to go.  He was upset and nervous as usual and his pulse was already passing 100.  I took over from mom with a back & neck massage and started a conversation about Monster Hunter and we got it back down to the low 80s before the doctor arrived.  I prayed through most of the procedure (since, if you recall from previous posts, the only time I can't watch a medical procedure is when it's this doctor and my son.)  But other than a little trouble getting him "out", it went well this time (the doc's getting better! :)

Afterward, in the recovery room, we had the tense moments about the low B.P. and then Daniel was complaining of being cold.  We were informed that the knob had broken off the thermostat and the vent was directly over the bed. (Great engineering guys - NOT.)  

As Daniel continued to wake up, I had a fairly long conversation with the doctor expressing my growing frustration at not getting any traction on his continued lack of growth.  I think she finally "understood" me when I used the word "unacceptable".  But we'll see.  In fairness, this doctor is somewhat caught in the middle between me and the other doctors who are the ones that need to be looking at these other issues.  As the oncologist, what I'm after is not her specialty, yet she is the one through whom everything has to go.  Anyway, we'll see how this plays out.  I realize nothing is going to happen physically until we're through this intensive phase, but what I'm not happy with is that there is no discussion, no plan, no ownership, and no "next step" in place.  Is that the engineer, the project manager, or the DAD in me coming out?  Doesn't really matter - they're stuck with me.

As we prepared to leave, we go the low-down on what the rest of this phase will look like.  Unfortunately, one of the primary drugs they'd wanted to give him ("Pegallated Aspariginase") turns out to give him a fairly severe allergic reaction.  They tried twice and then gave up a couple months ago.  So the "plan B" is a different drug that has to be given 6 times (on 6 different days) for each single dose the Peg-Asp. would have been given.  This means we're heading back to Riley every other day for a week and a half each time.  

Hmmm. Didn't know that.  

We also found out, it can't be administered through his port.  It has to be given my intramuscular injection - in the thigh.  

Hmmm. Didn't know that.  

Depending on the dosage he'll receive (which they didn't have yet today), they may have to give half of it in two different locations ... one in each leg ... every other day ... for a week and a half ... and they HURT.

Hmmm. Didn't know that.

Daniel REALLY doesn't do well with needles (yes, even after all he's been through).  As they were describing to us where to apply the Lidocane (a topical anesthetic cream) before he comes in, he caught on.  We played it way down talking about how much smaller injection needles are than the blood-draw and access needles he's used to.  I think we made some progress there. But the fact that these injections will make the muscle hurt didn't come up.  That's going to be a big problem ... especially as they keep injecting into the same area every other day.  This will be rough ... very rough.

My mood was going downhill fast this afternoon.  As we left, we stopped by the pharmacy downstairs where the doctor had called in a prescription about 45 min earlier, only to be informed it would be another 30-45 minutes.  Great.

As we sat there waiting, Andrea and I were talking about some financial issues predicated by our Family Doctor that I won't go into except to say that it didn't do my deteriorating mood any good at all.  I left Andrea & Daniel in the pharmacy waiting area and headed back to work since we'd driven separately.  The rest of the day at work didn't go much better, but at least I got 7 hours in.  How productive they were was another matter as my head was in a million other places.

As I left work, I found myself at the tail end of the thunderstorm that blew through minutes earlier.  REALLY need the rain - but did it have to be right when I wanted to drive home ... and in the same direction.  I know - gift horses and all that.  As I pulled in the drive way, I was accosted by the pesky little neighbor girl who was adamant that she needed to come in the house with me - if not to play with Daniel (whom I told her was not feeling well), then to be allowed to cook the can of soup she was carrying around in our microwave.  What?!  So I got this convoluted story about how they don't have a microwave, and couldn't find the cord to the hot plate, and the stove costs too much money, and ... Um no; not playing this game.  You'll have to have your parents get you something to eat.  I'll have to find out what all that was about another time, but not tonight.

Since I got home, Daniel has been getting more and more nauseated until he finally lost all his dinner and now is fighting the dry heaves.  I can't even get an anti-nausea pill into him for fear it'll just come right back up.  He feels miserable.  The good news is that this has been a very rare thing for him to get this sick.  The bad news is that he's this sick.  He's supposed to start another oral chemo drug tonight, but I'm obviously not giving it to him in this condition.  He's had enough for one day, and it can wait an extra day.

Andrea has been through the ringer these past few days (actually, I could just as easily insert "weeks", "months" or "years" there too) as well.  We think she's had a stomach bug and the family doctor she visited yesterday thought the same thing.  She'd done a sleep study a couple weeks ago and this visit was supposed to be reviewing the results, but they didn't seem to notice that they hadn't yet received them from the hospital yet. So despite frantic, last-minute calls, that didn't happen.  So now there will be another office visit once the results are in.  They'll no-doubt prescribe another several pills for her to start taking that won't be covered by insurance and will add to the hand-full she takes every day as it is.  I think I'll be attending that next meeting as well if at all possible.  Hope I don't need to start looking for another family doctor again, but I won't hesitate if I think things are not going in the right direction.

OK, I'm going to stop there.  My apologies if you've made it this far.  I feel better. LOL. :)  The truth is, we have an ENORMOUS amount to be thankful for that we DO know about, and way more than we could dream of that we don't know about, but Scripture promises.  I have a wonderful family and we're together this day and the future looks bright - next month, next year, and 1000 years from now.  We have much goodness to look forward too.  We knew this phase was going to be a mountain that needed climbing.  It's height and ruggedness came a little more into view today, but it will just be that much sweeter to be on the other side of it WHEN we get there ... and we will.

Lord please let us learn ALL that you have planned for us in these coming days - don't let any single second of difficulty or pain or struggle be lost for the good that You desire to bring from it.  We cling desperately to your promise that A.L.L.(*) things work together into a pattern for good ... (Rom 8:28)  Thank you.  Thank you for everything about today. Thank you for loving us and being here beside us every step of the way and for keeping our eyes on the far horizon.  Teach us to trust, teach us to love, teach us to enjoy "life in every breath."

Amen!  Thanks to everyone who is also running this race alongside us or cheering or handing us a water bottle on the way by.  We love you and appreciate every one of you.  Please keep your prayers coming - they are by FAR what we value and covet the most.  

Please also remember to pray for Joey, Nick, and Elizabeth Keller as often as possible.

I'm off to set up the air mattress beside Daniel's bed for the night.  

Grace and Peace,

- Tim -

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 -