Mirroring the CaringBridge Post here: http://www.caringbridge.org/visit/danieljmiller/journal
It's been awhile since our last update. In general, no news is good news, but it's just plain been B-U-S-Y! Having started teaching an evening Bible study course in Genesis last week, it's been a real challenge to keep up with all that's going on. But it has also been a blessing and a joy for me to finally get back to teaching the Bible again - one of my great loves.
Daniel is now well into the 2nd, or "Consolidation" phase of his chemotherapy. Each phase except the last is about 2 months long. Unfortunately, we discovered last week that there are FIVE phases instead of the 3 we thought were coming. So an extra 4 months before we get to the less-intense Maintenance phase, was not welcome news at all. Each of the first 4 phases are intensive, and the 3rd one (April - May) will involve 4 pre-planned admissions to the hospital so they can watch him closely as one of the nastier of the poisons we're injecting him with is administered.
As the weeks go by and I see the damage and reactions Daniel has to these drugs, I've been growing more and more upset at the thought of the what I'm forced to subject my son to. Yes, I know it's the right course and I have no regrets or need of encouragement that it's the right thing to do. But knowing it's right doesn't make it any easier for a father to subject his son to torture ... a tiny glimpse of God the Father watching the events of the crucifixion unfold. What we're going through is nothing close, but it does at least offer some insight. For me, it's that much more difficult knowing that it's entirely possible that Daniel may have already been completely healed from this disease and none of this is even necessary. But God has not chosen to confirm that fact to me as yet, and so I am confident that this is the wisest choice. But it sucks no matter how you cut it. Nevertheless, we rest in the knowledge of God's perfect goodness, grace, love, faithfulness, and knowledge of what this will bring in all our lives.
Sometimes the experience reminds me of riding a commercial aircraft. Being a pilot myself, I really REALLY want to be up front in that left seat - knowing what the flight plan is, the en route weather report, our exact position, nearest traffic and Pireps along the way, and when the next course change is coming up. Sitting in the back with the flight deck door locked is frustrating. But I always opt for a window seat so at least I can enjoy the never-gets-old beauty and joy of flying along the way. The rest is in the hands of the guys up front ... who have a LOT more hours-in-type than I do and, whether I admit it or not, are MUCH better qualified than I to get the job done.
Yesterday (Tues) was supposed to be a short clinic day, though it did include a spinal procedure. I had hoped to avoid going altogether as I'm trying desperately to keep up with a growing workload at work, but Daniel's face, when I told him I wasn't planning on going, put a quick end to those ideas. His words were something to the effect, "I don't know why, but I always feel better and more relaxed when you're there when I'm having a procedure." Well that ended that conversation didn't it?! I'm putty. Nuff said.
At least I've learned enough about this game to know to drive separate now since my class starts at 6:30p (unfortunately on the same days as our regular clinic visits now.) So even though they scheduled an additional 4-hour IV infusion without letting us know in advance, I was able to head out after he got out of recovery and get a couple hours in at work before heading home for Bible study.
The day, however, was just determined to NOT be uneventful. As they started to give Daniel one of the nastier drugs in the arsenal (PEG-Asparaginase for the initiated) the nurse let me know that it is not uncommon to have an adverse reaction to it and she showed me how to stop the IV. About 15 minutes into it, Daniel asked, "Dad, is there something I'm supposed to be looking for?" I didn't understand his question at first, but a couple questions later I realized he was responding to something I'd said to him a couple weeks ago about watching for signs of reactions when a drug is administered. He made it clear something was not right and he was feeling dizzy and having difficulty breathing. I immediately stopped the IV and Andrea went after the nurse. In moments, our little cubicle was filled with nurses and doctors taking blood pressure and scrambling to get an infusion of Benadryl started. His throat closed up, he became very flushed, and was bordering on panic before things started to calm down, but we were lucky to have caught things so soon and had a VERY quick response from the medical team on the floor. Thanks to Daniel saying something so quickly! I'm also really glad I had the conversation with him earlier about paying attention when a new drug is administered!
Everything was back to "normal" (which itself is a fast-moving target these days) in 10-15 minutes and he was conked out from the Benadryl. The spinal procedure went about like normal (i.e. his blood pressure and pulse skyrocket as they prepare him and I give him a back rub to try (ineffectively) to keep him calm. Nurse Sharon was there to do the procedure, so I stayed and had no problems.
Last week didn't go well at all. He was so wound up, it took 3x the normal sedative to get him out, and then the doctor was there to do the procedure instead of Sharon, and wasn't doing well at getting the needle in the right spot. Apparently, she's still "practicing" medicine! :( I had to leave again. That's the second time I've not been able to stay in the room - both times were when the doctor was performing the procedure instead of the nurse. Go figure.
Anyway, though it took him awhile to wake up (because of the Benadryl), in a little bit, he was happily chowing down on a hotdog buried in ketchup and mustard and asking for the portable Wii to be brought in for him to play.
To help balance the day a bit, when Daniel and Andrea finally got home (sometime after I left to teach my class), they found that the Indiana Make-A-Wish Foundation had actually come through with locating and purchasing a rare LEGO set that Daniel had asked for. (They're AWESOME!!!) The huge box was sitting on the doorstep and by the time I got back home, Daniel had completely covered the Dining Room table with the pieces and was already half done with the two-part gigantic models. You can check out the pictures Andrea took of the process (finished this morning) here: https://www.facebook.com/tmiller42
A huge thanks again to everyone thinking about and praying for us. God has been answering them wonderfully!!
Grace and Peace to you all.
- Tim -
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