Easter

(Mirroring most recent entry here:  http://www.caringbridge.org/visit/danieljmiller/journal)

Easter:

Andrea covered much of this in her update to my last post, so I'll not rehash the same events except to fill-in a few extras.

It was a really long night for all three of us.  We got here around 1:30a and weren't moved to a room until after 5:30a. So it was a REALLY long night for Andrea and I trying to catch a few winks between interruptions in a couple of really small, hard chairs. There wasn't even the usual bench/ couch in this particular ER room, and we had to bring in the 2nd chair at that.  I didn't get much sleep until after about 8 or so.  Although interrupted quite a few times, we both "slept" until about noon.  Daniel & I both tried resting a couple other times during the day, but it was pretty much a wasted effort. 

Any time we come in for a fever, they automatically do 4 different blood cultures.  They take two samples each from two different places (his port and his arm) and place samples in petri dishes in an automated machine that "watches" for anything to start growing.  In the past nothing has ever shown up. But the hospital started calling us about midnight last night when the machine found something growing.  Unfortunately, my phone was upstairs on the charger & it wasn't until they tried Andrea's phone about 1a that we got the message. 

We still haven't heard exactly what bacteria has been identified, but if only one of the 4 remains positive (nothing grows in the other 3 cultures), then there's a fairly high probability that it's just the result of some contamination in one of the samples.  But without knowing for sure, we have to take it seriously and hit him with a boatload of antibiotics - something I hate doing under NORMAL circumstances!  But I see very few choices here.  I strongly suspect that we won't see any additional cultures go positive (I think it was a contamination issue), but the extreme danger of actually having an infection with his almost nonexistent immune system means we have to take every possible precaution and hit it hard and aggressively - even if it's a false alarm.

After the incident with the other kid earlier today (all accidental of course, but nonetheless frustrating), the combination of some Tylenol and some food seems to have made things much better.  Much of the swelling has gone down and the second time they attempted to re-access the port, they called in the Nurse Supervisor who'd had a lot of experience.  It showed.  Things went quickly, easily, and with MUCH less pain than the previous time.  Our nurse was great, and he felt really bad about the whole ordeal, but we were also really glad he asked for help in this situation.

One of the antibiotics they give him is called Vancomycin. Unfortunately, many people have a low to moderately severe reaction to it known as "Red-Man Syndrome".  This happened to Daniel the first time he received it a few weeks ago.  He's gotten it once or twice since then with no problems since they adjust to giving it to him much more slowly and give him Benadryl first.  Tonight though, even after the Benadryl and with the slower rate, he started to feel some of the initial symptoms of a reaction and became worried about it.  I stopped the IV myself and went to talk to the nurse.  We decided to wait a bit, get some food in him, and then try again even more slowly.  The combination (together with watching "Transformers" on TV :) did the trick and we had no further issues.  But it's all combined to just make a really long day.  If it weren't for the basket of toys they gave him, you'd have never known it was Easter around here.  But we'll be sure we get time to celebrate as a family - whether it's here in a hospital room, or back home.

As Andrea said, his next phase of chemotherapy is due to start this coming Friday.  But it will require that his white cell counts are over a certain level that he's not even close to right now.  Mixed emotions over that to say the least!
Nevertheless, I find myself at the end of this day with a grateful heart.  Having watched "The Passion of the Christ" on Friday evening as a family, we have all been struck this weekend with the unfathomable suffering and selflessness that our Lord Jesus Christ underwent on our behalf.  Our own trials and tribulations are insignificant and, in Paul's words, but a "breath" compared to His eternal sacrifice for us.  It makes me feel ashamed to complain or, even for a moment, feel sorry for ourselves compared to what Jesus Christ did on our behalf. 

Many Christians don't realize that Jesus' sacrifice was not limited to those few hours leading up to Golgotha a couple thousand years ago.  Rather, it was Jesus willingness to condescend from His position with the Father in order to become a Man ... one of us ... not just for thirty some years, but FOREVER.  Perhaps the most staggering thing about what God did on our behalf all those years ago, was not that God would die on our behalf (though that is incomprehensible enough), but that there is now a MAN seated at the right hand of the Father on the throne of God.  What Jesus Christ gave up in order to become one of us (note that He never ceased to be God, only laid aside some of his glorious attributes that He might also become fully human - Phil 2:6-9).
Paul considered it a great privilege and a necessary part of the process by which the Holy Spirit perfects His work in us, that we must participate "in the fellowship of His suffering" (Phil 3:10).  And so if, in some small measure, these trials which God has allowed into our lives, might teach us something about our Lord ... much less make us in any way more like Him ... then we can truly rejoice in these things with much thanksgiving that God is at work in us and through us to make A.L.L. "things work together into a pattern for Good." (Rom 8:28) 

Each day God finds a new way to ask each of us, "Do you trust Me?".  And though we certainly find ourselves wavering far more often than we'd like, it becomes a bit easier each time to trust Him with A.L.L. things.  ("Control" is such an illusion anyway, isn't it? :)

Though we celebrate Easter as one of the central-most holy days of the Christian Calendar, it is important to recognize that the entirety of the means of our salvation was accomplished 3 days and nights earlier on a wooden cross on the top of a hill named Golgotha.  The Resurrection 3 days later proved that He was Whom He said He was and accomplished what He said He would accomplish.  Easter is rightly a time of enormous celebration, but all of Time and Eternity revolves around the Cross and Jesus' proclamation ... "Tetelestai": "It is finished".

We hope everyone has had a joyful and fruitful time of celebrating Jesus' resurrection and drawing closer to Him through these past few days.  Our gratitude and love go out to all of you who have kept us with our saga during these trying times, but mostly to our Faithful, Loving, Gracious, and Wonderful Counselor - the King of the Universe, Master Physician, and Personal Friend - "Jesus Christ: God's Son; Savior".

Grace and Peace to all;

Daniel, Andrea, and Tim