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

Andrea's Message

This is Andrea.  I'll try to add a few more details, and Tim can write a much more eloquently worded synopsis when he has time.

We got to the ER around 1:30 am Easter morning.  Tim and I were up all night.  They took more cultures and gave him two different antibiotics.  His counts came back about the lowest he's ever had I think - 150. Daniel was able to rest some between pokes and prods.  He was taken to his room at 6:30 am - 5134-2 (which was an ordeal as well.  Room he was to go to had some kind of leak all over the floor, so had to put him in another one with a roommate that was missing a bed, so had to get a bed, sleeping chair for us, and table cart thing.)  After he got settled in, I left and came home to sleep while Tim slept in the room.

According to Tim, he was given a small Easter Basket with a few stuffed animals and toys in it.  While he was in the play room apparently another kid tripped over his IV line, causing the medicine he was getting to all go under the skin, making him sore.  He had to have the port re-accessed, and the nurse didn't get it in right first try and had to re-stick him again.  Tim said he thought he was having another reaction (has had them before so give this type antibiotic real slow to him) to one of the antibiotics so the nurses were discussing with the Dr. what to do. 

Why are we here in the first place?  One of the 4 blood cultures taken Friday when he was in the hospital due to a fever came back positive for bacteria growth.  It was one taken from the port site (take two from both port site and his arm.)  They said it could be a contaminated sample, but will have to wait and see if the others grow any bacteria as well.  He has to have three consecutive days of negative culture results with no fever before he can go home.

This couldn't have been worse timing for him, with it being Easter weekend, and the fact he has a scheduled 4 day hospital stay this coming Friday.  It is possible he'll end up being there all week, but we don't know for sure.  Still have to find out if his chemo for this coming Friday is count dependent or not (meaning if it's too low they wait till it comes up.)

We know God is in control through all this.  We know He is watching over Daniel.  It's just been a very hard time emotionally for all of us, but especially Daniel.  We had had such a great evening together Sat.  Watched the movie "The 10 Commandments".  Daniel was in a great mood and being silly all evening.  He had just got in bed at midnight (I know - but hey, it's a 3 1/2 hr move :-P) when I got the call from the Dr. about his counts and having to bring him in.  He became hysterical and couldn't quite crying.  I wanted to scream NO and ball myself, but couldn't.  I didn't understand why a few hours should matter that much and not be able to at least wait till morning to bring him in.  But as Tim wisely said, you just don't mess around with this type of thing.  So off we went.

Lord, what are the lessons for us to be learning through this?  Help us always keep our eyes on You!  Thank you all for the continued prayers.  Sorry if this is rambling, but I'm really tired and am getting brain fog!  Will keep you posted on how things progress.

From a Good Friday to a Bad Easter

Just got an emergency call from Riley that they found something in Daniel's blood cultures. So we're heading in to ER now (just before 1am). He'll be admitted and given broad spectrum antibiotics until they can get an exact determination of what's growing in the culture.  He's practically hysterical right now over the thought of having to go back in again.  Please Pray for him.

More to follow

A Good Friday for Daniel

(Mirroring from http://www.caringbridge.org/visit/danieljmiller/journal)

A Good Friday for Daniel:

Daniel is doing much better today.  His fever appears to be gone. However, his white cell count has dipped dangerously low. It was right on the borderline of an automatic hospital admission yesterday, but they let him go home in the end since his fever appeared controlled, but only with the warning that if it began to climb again, we'd be admitted immediately.  So we're grateful that the fever looks to be gone, but it does look like quarantine for Easter.  At least we're glad to not be in the hospital. 

Last night, he'd started to feel better, so I gathered everyone together to read the Easter story from Matthew and then we watched "The Passion of the Christ" together.  I was apprehensive letting Daniel see this and described to him what would be happening.  He was insistent that it would be OK, so we went ahead.  He was fine with it and when we talked about it afterward he expressed, or course, that he hadn't realized what Jesus really went through and actually felt more at peace and "happy" for having spent the evening learning about God. (insert happy face on dad at this point. :)

As always, THANK YOU all for your prayers.  Please continue to lift him up during this time of dangerously low immune system, and having to miss the Easter festivities with the rest of the family.

We are most grateful for this wonderful Easter weekend and that we will be able to spend it at home with our family and our gracious RISEN Lord and Savior Jesus Christ.

HAPPY RESURRECTION DAY to all!

Daniel, Andrea, and Tim