Showing posts with label Test Results. Show all posts
Showing posts with label Test Results. Show all posts
Friday, June 1, 2012
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.
Sunday, April 8, 2012
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
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
Sunday, March 11, 2012
Still Here!
Mirroring our CaringBridge update here:
Sorry for the delays in posting. I sometimes forget that not everyone follows Facebook religiously! We're still admitted here at Riley and Daniel has still got the fever and very low white-cell counts (ANC < 500 for those familiar). So there's no immediate end in sight.
I've spent all the nights here with him since he was checked-in, but Andrea is currently planning to spend tonight (Sunday) here so I can get a solid night's sleep before returning to work tomorrow morning. Unfortunately, she's been feeling under-the-weather herself and now showing signs of a cold as well. So that could very well limit her ability to even enter the floor here in the Oncology wing.
Though we still don't have this morning's counts, the past two days have shown very gradual improvements .. at least the numbers (fever and blood counts) have been heading the right direction as opposed to getting worse. But they all still fluctuate wildly. So it could be a long week. His next clinic visit is scheduled for Wednesday, but is dependent on his blood counts, so that could be delayed unless things improve markedly. Hitting him with the next round of chemo after this bout really doesn't make me happy, but there are few choices here and until I hear something directly from God to the contrary, we intend to stay the course.
Daniel is not at all happy over the prospect that someone might not always be available to be with him 24/7, but at this point, that's a very possible reality. Besides a couple of deadlines at work this week, we also have some evening events coming up that Andrea and I had really not wanted to miss as well. So it's definitely one-day-at-a-time.
On the plus side, the recent purchase of my laptop has allowed me to spend some of the time here at the hospital working on my Genesis class materials. So far, I've been able to keep pace at least with the lecture notes. Despite the obvious timing difficulties, it's been a real joy for me to be teaching again and I'm very thankful that the Lord has provided the opportunity and, so far, the ability to keep up with the class.
On the minus side, we got hit with the first round of bills coming through this week. It blew through our entire Flexible Spending Account allotment for the year in one whack. We're looking toward at least 4 planned hospital stays during April & May, and this week's extended (unplanned) hospital stay will undoubtedly be racking up a pretty ugly financial picture for us this summer. We hope and pray for no more unexpected visits / complications as have been plaguing us with the fevers over these past couple months.
On a positive note, we've been extremely blessed at the thoughtfulness and all the work put forth by good friends Eric and Veronica Phillippe who are sponsoring benefit concerts in Daniel's honor this Spring. The first one takes place a week from today at Horizon Christian Fellowship. Unfortunately, it doesn't appear Daniel will be able to make it, but we're still hoping Andrea and/or I will at least be able to attend. It's another of the amazing ways that God continues to touch and bless us through family, friends, and the Body of Christ during this difficult time.
We'd love to see everyone if you can attend (and it's free!! :-) Event details can be found here: https://www.facebook.com/events/326194700760323/ and here: http://www.horizonindy.org/news/benefit-concert-for-the-miller-family/)
We are so very, very grateful for all the prayers and comments that you all send our way. We feel (and NEED) every one. Thank you!
- Tim -
Sorry for the delays in posting. I sometimes forget that not everyone follows Facebook religiously! We're still admitted here at Riley and Daniel has still got the fever and very low white-cell counts (ANC < 500 for those familiar). So there's no immediate end in sight.
I've spent all the nights here with him since he was checked-in, but Andrea is currently planning to spend tonight (Sunday) here so I can get a solid night's sleep before returning to work tomorrow morning. Unfortunately, she's been feeling under-the-weather herself and now showing signs of a cold as well. So that could very well limit her ability to even enter the floor here in the Oncology wing.
Though we still don't have this morning's counts, the past two days have shown very gradual improvements .. at least the numbers (fever and blood counts) have been heading the right direction as opposed to getting worse. But they all still fluctuate wildly. So it could be a long week. His next clinic visit is scheduled for Wednesday, but is dependent on his blood counts, so that could be delayed unless things improve markedly. Hitting him with the next round of chemo after this bout really doesn't make me happy, but there are few choices here and until I hear something directly from God to the contrary, we intend to stay the course.
Daniel is not at all happy over the prospect that someone might not always be available to be with him 24/7, but at this point, that's a very possible reality. Besides a couple of deadlines at work this week, we also have some evening events coming up that Andrea and I had really not wanted to miss as well. So it's definitely one-day-at-a-time.
On the plus side, the recent purchase of my laptop has allowed me to spend some of the time here at the hospital working on my Genesis class materials. So far, I've been able to keep pace at least with the lecture notes. Despite the obvious timing difficulties, it's been a real joy for me to be teaching again and I'm very thankful that the Lord has provided the opportunity and, so far, the ability to keep up with the class.
On the minus side, we got hit with the first round of bills coming through this week. It blew through our entire Flexible Spending Account allotment for the year in one whack. We're looking toward at least 4 planned hospital stays during April & May, and this week's extended (unplanned) hospital stay will undoubtedly be racking up a pretty ugly financial picture for us this summer. We hope and pray for no more unexpected visits / complications as have been plaguing us with the fevers over these past couple months.
On a positive note, we've been extremely blessed at the thoughtfulness and all the work put forth by good friends Eric and Veronica Phillippe who are sponsoring benefit concerts in Daniel's honor this Spring. The first one takes place a week from today at Horizon Christian Fellowship. Unfortunately, it doesn't appear Daniel will be able to make it, but we're still hoping Andrea and/or I will at least be able to attend. It's another of the amazing ways that God continues to touch and bless us through family, friends, and the Body of Christ during this difficult time.
We'd love to see everyone if you can attend (and it's free!! :-) Event details can be found here: https://www.facebook.com/events/326194700760323/ and here: http://www.horizonindy.org/news/benefit-concert-for-the-miller-family/)
We are so very, very grateful for all the prayers and comments that you all send our way. We feel (and NEED) every one. Thank you!
- Tim -
Friday, February 10, 2012
Thankful For Nothing!!
Today we finally got the results back from Daniel’s most
important bone marrow test that took place last Friday (2/3/12). This was “Day
29” or the final day of the first phase of his treatment. This test was the one that would tell us (A)
how well he responded to the first and most critical phase of treatment, and
(B) how to proceed with the rest of his treatment over the next two years. As I’ve written about previously, the goal
for the first phase was to get him into Full Remission by Day 29. This is determined by the “preliminary
results” that are obtained usually within an hour after the test is performed
by a lab right there at the hospital.
They look at a relatively small (tiny actually) blood sample
microscopically and count the number of cancer cells found. When the number reaches zero, he’s considered
to be in “remission” or “Cancer Free”.
This does NOT mean he’s actually 100% cancer free though (go figure) –
only in terms of that particular test. A
much more rigorous test is then performed by a specialized lab that takes a few
days to complete and obtain results.
This is called a “Minimal Residual Disease” or MRD test and a sample of
blood literally thousands of times larger is examined by special computer
processes to look for more cancer cells.
Here, the goal is to get him to 0.01% cancer cells in his blood by Day
29.
We were very pleasantly surprised to
find that Daniel had attained remission (the smaller test) only half way
through the first phase – by Day 15. And
that same test showed him already at 0.013% MRD (the bigger test) … nearly to
the end goal already. But they indicated
that, although that Day-15 testing was an important window into how the
treatment was going, nothing would change based on its results. Only the Day 29 test would make any
difference. The preliminary (smaller)
test last Friday again showed zero cancer cells and that he was still in full
remission. And we’ve been waiting for
the (bigger) MRD test results until this morning. They showed that he had no only achieved the goal
of 0.01%, but actually all the way to 0.00 – zilch, nothing, nada, not a single
cancer cell was detected in the test.
Obviously we couldn’t be happier!
And as my title suggests, we are extremely THANKFUL for the test
results showing NOTHING in the way of cancer cells (sorry, I couldn’t resist
the title. :)
I asked the doctor whether this was something unusual (still
hoping for a confirmation that our trip to see Solomon Wickey had produced
something out of the ordinary (aka “supernatural”), but alas it’s not too
terribly uncommon to have a 0.00% result on this test. It is however, no less wonderful and worthy
of celebration. Whether through the
efforts of doctors, Solomon Wickey, or the hundreds of faithful friends and
family who have continued to lift Daniel up daily in prayers and fasting, one
thing is clear – God has working in the life of our little boy to bring him
through this ordeal and back to health.
A long and difficult road remains ahead short of some confirmation that
this is no longer necessary (that was a hint, Lord! :), but we are extremely
grateful to our Lord that Daniel is doing so well. Our battle continues with the compounding
side effects of the medications and the on-going susceptibility to infection
during these next couple of months (not to mention the psychological impacts
that Daniel has been struggling with more recently).
Tuesday (Valentine’s Day), Daniel begins the 2nd
phase of chemotherapy and will be going in weekly for the most part on Tuesdays
now. Thanks again to all of you who
think of us, read our posts, and / or pray for Daniel. We love you and may God richly repay your
kindness toward Daniel, Andrea and I.
- Tim -
Sunday, February 5, 2012
Waiting to Hear
Sorry to be so long this weekend in getting out an update from Friday.
Friday was "Day 29" of Daniel's chemotherapy and the end of Phase 1
called "Induction". The goal of Induction is to achieve full
"remission" which is defined as not seeing any cancerous blood cells in
the hospital's microscopic inspection of the bone marrow. Amazingly -
very likely miraculously - Daniel was found to be in full remission at
day 14. His blood counts (red, white, and platelet cells) have begun to
climb and show signs of healthy bone marrow making a comeback and as of
this past Friday, his white cells (partly responsible for your immune
system) were back above the magic level of 1000 meaning Daniel doesn't
have to be quite so careful about visitors, being in
public, and eating unsterile foods. So it was his beloved Taco Bell for
dinner on Friday night (does anyone remember the movie "Demolition
Man"? ha ha
Other than the standard precautionary spinal injection of chemo drugs (which they always due as a preventive measure), there was no chemotherapy given on Friday, but they performed a spinal tap and bone marrow test. The spinal tap draws spinal fluid to ensure that no cancerous cells have gotten into the spinal sheath (where it becomes very hard to treat. The bone marrow aspiration and biopsy draws a sample of both the marrow itself and the bone to look for cancer cells and see how things are progressing. Because leukemia is a cancer of the bone marrow, it is the only way to see accurately what's going on. The initial results that can be obtained directly by the hospital lab were again positive and showed no cancer cells. The more comprehensive test must be sent out to a highly specialized genetics lab and takes a few days to get results.
The docs however were confident enough from his history and current numbers to go ahead and give us the details of the next phase (called "Consolidation") that they plan to pursue assuming the test results come back as good as expected. I have mixed emotions about making assumptions everything will be good. Perhaps it's my cynicism, perhaps it's experience, perhaps it's my discomfort with making assumptions about what God is up to - but I dislike "counting my chickens before they hatch" as it were. So I remain, and request family and friends to remain - in interceding prayer for Daniel. The last time I "relaxed" after hearing good news, I got one of the worst shocks of my life when Daniel was moved to the Very High Risk category and we were told he had only a 60% chance of living. That turned out to be a false alarm, but I've tried hard to learn my lesson about making any assumptions or relaxing my constant petitioning before the Lord throughout this ordeal. After all, I'm quite confident that He has allowed all this to come into our lives in order that we may learn and grow and draw closer to Him through the midst of this fiery furnace. After all, those who looked in through the door and saw the 4th Man walking around there with Hananiah, Mishael, and Azariah (Daniel 3) were undoubtedly amazed and learned something. But no one knew more about that 4th Man than the 3 who were preserved through the flames with Him, and had their bonds burned from their hands and feet, and who walked side-by-side with Him through the very valley of death as a reward for their faith. But I digress. :-)
The next two months, if all goes as expected by the docs, will consist mainly of continued weekly chemo treatments and all the horrible side-effects that come along with them. At least we will be (mostly) done with steroids and his appetite is already beginning to return to normal. We look forward also to getting back on track with trying to find out why he continues to suffer from back pain and fairly intense muscle tension too. It's still a very long and difficult climb ahead for our little guy. But my Pilgrim's making great Progress.
Please continue to pray for the good test results the doctors are expecting and for the faith, perseverance, patience, and endurance Daniel needs to get through all that lies ahead.
- Tim -
Other than the standard precautionary spinal injection of chemo drugs (which they always due as a preventive measure), there was no chemotherapy given on Friday, but they performed a spinal tap and bone marrow test. The spinal tap draws spinal fluid to ensure that no cancerous cells have gotten into the spinal sheath (where it becomes very hard to treat. The bone marrow aspiration and biopsy draws a sample of both the marrow itself and the bone to look for cancer cells and see how things are progressing. Because leukemia is a cancer of the bone marrow, it is the only way to see accurately what's going on. The initial results that can be obtained directly by the hospital lab were again positive and showed no cancer cells. The more comprehensive test must be sent out to a highly specialized genetics lab and takes a few days to get results.
The docs however were confident enough from his history and current numbers to go ahead and give us the details of the next phase (called "Consolidation") that they plan to pursue assuming the test results come back as good as expected. I have mixed emotions about making assumptions everything will be good. Perhaps it's my cynicism, perhaps it's experience, perhaps it's my discomfort with making assumptions about what God is up to - but I dislike "counting my chickens before they hatch" as it were. So I remain, and request family and friends to remain - in interceding prayer for Daniel. The last time I "relaxed" after hearing good news, I got one of the worst shocks of my life when Daniel was moved to the Very High Risk category and we were told he had only a 60% chance of living. That turned out to be a false alarm, but I've tried hard to learn my lesson about making any assumptions or relaxing my constant petitioning before the Lord throughout this ordeal. After all, I'm quite confident that He has allowed all this to come into our lives in order that we may learn and grow and draw closer to Him through the midst of this fiery furnace. After all, those who looked in through the door and saw the 4th Man walking around there with Hananiah, Mishael, and Azariah (Daniel 3) were undoubtedly amazed and learned something. But no one knew more about that 4th Man than the 3 who were preserved through the flames with Him, and had their bonds burned from their hands and feet, and who walked side-by-side with Him through the very valley of death as a reward for their faith. But I digress. :-)
The next two months, if all goes as expected by the docs, will consist mainly of continued weekly chemo treatments and all the horrible side-effects that come along with them. At least we will be (mostly) done with steroids and his appetite is already beginning to return to normal. We look forward also to getting back on track with trying to find out why he continues to suffer from back pain and fairly intense muscle tension too. It's still a very long and difficult climb ahead for our little guy. But my Pilgrim's making great Progress.
Please continue to pray for the good test results the doctors are expecting and for the faith, perseverance, patience, and endurance Daniel needs to get through all that lies ahead.
- Tim -
Tuesday, January 31, 2012
An Update & Some Prayer Requests
First, a huge thank you to everyone who has posted a comment or
guestbook entry to the Caring Bridge site or the blog. Please know that
we read EVERY ONE and frequently go back through them again. Your
comments, encouragements, and just letting us know that you're praying
for us are absolutely wonderful. Thank you all.
Daniel has been doing well and tolerating the chemo treatments better than average with regard to side effects. Nausea has been very infrequent, and hair loss has only recently begun to show. It's coming out fairly fast now though and he's certainly not happy about it. The biggest problem is the ravenous appetite that the steroids give him. He's put on about 10lbs in the past 4 weeks - a 16% increase in weight roughly equivalent to a 180lb person gaining 30lbs so you can imagine the effects on his body. Combined with the bloating the steroids produce around the face and his gigantic belly, he's quite the site and becoming more and more uncomfortable. It's exacerbating his back pain and the new brace that was made for him doesn't really fit at all because of it, so he can't wear it. It actually causes him pain to put it on because the bad-fit forces him into an even more uncomfortable position. The back problems continue to be a concern and I'll be pushing for more investigation / action on this front with the doctors this Friday. This was one of the original problems that I was trying to get to the bottom of when the leukemia was discovered, but the docs don't believe they're related.
He thinks and talks about nothing but food and I'm having to be more and more hard on him about limiting portions, refraining from snacks, and drastically cutting back the total intake. I'm really worried at this point that the food intake and weight gain will be producing it's own problems if it continues unchecked.
We believe that this Friday will be his last steroid treatment - at least for awhile as we come to the end of the first phase (called "Induction"). He has another bone marrow aspiration and biopsy scheduled for Friday and, assuming the results come back as positive as we've been seeing, we'll then move into the "Consolidation" phase. They haven't told us much about it yet, as the exact details are very dependent on these test results. We know that it's still fairly intensive as far as the chemotherapy, but supposedly not as bad as this first phase. I'm hoping we'll know all the new details on Friday.
This weekend, one of his good friends came over to play for a few hours and some of the girls from church his age made him a beautiful friendship quilt. We were all REALLY impressed. It was really good for Daniel too as I've more or less had him under reverse quarantine for a month now. The good news is that his last blood test shows his counts beginning to make a slow climb again and the docs believe this is demonstrating the recovery of healthy bone marrow. We want to see them continue to climb back toward the healthy / normal region. Daniel is praying for the same thing just so he can have Taco Bell again!
Prayer Requests:
1. Continued good results moving toward (if we're not already there) complete and total healing
2. Wisdom, Courage, Endurance, Self-Control, etc. for Daniel with regard to food intake.
3. Sleep for everyone! (Andrea & I tend to think/worry too much, & Daniel has insomnia as a drug side-effect ... so he lays awake all night thinking about food.)
4. Solutions / healing / wisdom about the ongoing & increasing back pain.
5. That Daniel will be able to deal well with the hair loss & other side effects - especially the visible ones - to his poor little body.
6. That all the lessons God has for us in this would be well-learned and that we as a family would continue to keep and protect the JOY of the Lord despite circumstances & worldly "wisdom".
7. That God would be glorified greatly through all this, and that others might come to know Him or know Him better through it.
8. Time management for me (Tim) as I try to balance work, time with doctors & hospital visits, & preparing for my upcoming Genesis class.
Daniel has been doing well and tolerating the chemo treatments better than average with regard to side effects. Nausea has been very infrequent, and hair loss has only recently begun to show. It's coming out fairly fast now though and he's certainly not happy about it. The biggest problem is the ravenous appetite that the steroids give him. He's put on about 10lbs in the past 4 weeks - a 16% increase in weight roughly equivalent to a 180lb person gaining 30lbs so you can imagine the effects on his body. Combined with the bloating the steroids produce around the face and his gigantic belly, he's quite the site and becoming more and more uncomfortable. It's exacerbating his back pain and the new brace that was made for him doesn't really fit at all because of it, so he can't wear it. It actually causes him pain to put it on because the bad-fit forces him into an even more uncomfortable position. The back problems continue to be a concern and I'll be pushing for more investigation / action on this front with the doctors this Friday. This was one of the original problems that I was trying to get to the bottom of when the leukemia was discovered, but the docs don't believe they're related.
He thinks and talks about nothing but food and I'm having to be more and more hard on him about limiting portions, refraining from snacks, and drastically cutting back the total intake. I'm really worried at this point that the food intake and weight gain will be producing it's own problems if it continues unchecked.
We believe that this Friday will be his last steroid treatment - at least for awhile as we come to the end of the first phase (called "Induction"). He has another bone marrow aspiration and biopsy scheduled for Friday and, assuming the results come back as positive as we've been seeing, we'll then move into the "Consolidation" phase. They haven't told us much about it yet, as the exact details are very dependent on these test results. We know that it's still fairly intensive as far as the chemotherapy, but supposedly not as bad as this first phase. I'm hoping we'll know all the new details on Friday.
This weekend, one of his good friends came over to play for a few hours and some of the girls from church his age made him a beautiful friendship quilt. We were all REALLY impressed. It was really good for Daniel too as I've more or less had him under reverse quarantine for a month now. The good news is that his last blood test shows his counts beginning to make a slow climb again and the docs believe this is demonstrating the recovery of healthy bone marrow. We want to see them continue to climb back toward the healthy / normal region. Daniel is praying for the same thing just so he can have Taco Bell again!
Prayer Requests:
1. Continued good results moving toward (if we're not already there) complete and total healing
2. Wisdom, Courage, Endurance, Self-Control, etc. for Daniel with regard to food intake.
3. Sleep for everyone! (Andrea & I tend to think/worry too much, & Daniel has insomnia as a drug side-effect ... so he lays awake all night thinking about food.)
4. Solutions / healing / wisdom about the ongoing & increasing back pain.
5. That Daniel will be able to deal well with the hair loss & other side effects - especially the visible ones - to his poor little body.
6. That all the lessons God has for us in this would be well-learned and that we as a family would continue to keep and protect the JOY of the Lord despite circumstances & worldly "wisdom".
7. That God would be glorified greatly through all this, and that others might come to know Him or know Him better through it.
8. Time management for me (Tim) as I try to balance work, time with doctors & hospital visits, & preparing for my upcoming Genesis class.
Friday, January 27, 2012
More Good News Today
(Mirroring Post on Caring Bridge)
We got some good news from last week's blood test results today. I'd forgotten to check back with them earlier in the week regarding the portion of the blood test that takes several days to get results back, but I reminded Andrea to ask them today during the weekly chemo visit. This is the much deeper analysis of his bone marrow aspiration that looks for cancerous cells. You may recall that the hospital does a "quick look" within just a few minutes of the procedure and we got those results back right away pronouncing that he was in full "remission" last Friday. They found ZERO cancerous cells in that quick look analysis even though they know there are still some cancer cells lurking around in there ... that's what this deeper test is for.
They told us the goal is to get the total cancer cell ("blast cell") count down to 0.01%. I believe this is what they hope to achieve by the end of the first month of treatment. The results from last Friday came back at 0.013% - within just a hair's breadth of the goal already. Andrea said one of the other doctors dropped by just to let her know how unusual this good a result is this early in the treatment plan. I wish I'd been there to fire off my usual plethora of questions to them, but this is the first visit I haven't attended (trying desperately to catch up on all the work I've missed!) Regardless, the news couldn't be better nor fall on more receptive ears. Although still dangerously low, his blood cell counts are beginning to climb again too - also a sign that the good (non cancerous) marrow is working again and on the path to recovery.
Whether due to the thousands of prayers going up, or the wonderful medical staff at Riley and the miracles of modern medicine, or the trip to see Solomon Wickey, or some other factor, we give all glory and praise to our loving and gracious God. We also want to continue to express our deepest thanks to all who have labored on Daniel's behalf during this trial. I can't imagine where we'd be without so much help and prayer from so many. Thank you.
Daniel also picked up his new back brace today and I'll be heading home from work soon to get my first glimpse of it. Please continue to pray for his complete recovery with the cancer, the osteoporosis, the chemotherapy side-effects, the stunted growth issues (which we still haven't addressed), and whatever is the cause of his on-going back pain. We also ask for prayers for wisdom and perseverance as we try to make the best decisions regarding visitors, diet, and finding our "new normal" as a family.
Thanks again to all.
- Tim -
We got some good news from last week's blood test results today. I'd forgotten to check back with them earlier in the week regarding the portion of the blood test that takes several days to get results back, but I reminded Andrea to ask them today during the weekly chemo visit. This is the much deeper analysis of his bone marrow aspiration that looks for cancerous cells. You may recall that the hospital does a "quick look" within just a few minutes of the procedure and we got those results back right away pronouncing that he was in full "remission" last Friday. They found ZERO cancerous cells in that quick look analysis even though they know there are still some cancer cells lurking around in there ... that's what this deeper test is for.
They told us the goal is to get the total cancer cell ("blast cell") count down to 0.01%. I believe this is what they hope to achieve by the end of the first month of treatment. The results from last Friday came back at 0.013% - within just a hair's breadth of the goal already. Andrea said one of the other doctors dropped by just to let her know how unusual this good a result is this early in the treatment plan. I wish I'd been there to fire off my usual plethora of questions to them, but this is the first visit I haven't attended (trying desperately to catch up on all the work I've missed!) Regardless, the news couldn't be better nor fall on more receptive ears. Although still dangerously low, his blood cell counts are beginning to climb again too - also a sign that the good (non cancerous) marrow is working again and on the path to recovery.
Whether due to the thousands of prayers going up, or the wonderful medical staff at Riley and the miracles of modern medicine, or the trip to see Solomon Wickey, or some other factor, we give all glory and praise to our loving and gracious God. We also want to continue to express our deepest thanks to all who have labored on Daniel's behalf during this trial. I can't imagine where we'd be without so much help and prayer from so many. Thank you.
Daniel also picked up his new back brace today and I'll be heading home from work soon to get my first glimpse of it. Please continue to pray for his complete recovery with the cancer, the osteoporosis, the chemotherapy side-effects, the stunted growth issues (which we still haven't addressed), and whatever is the cause of his on-going back pain. We also ask for prayers for wisdom and perseverance as we try to make the best decisions regarding visitors, diet, and finding our "new normal" as a family.
Thanks again to all.
- Tim -
Saturday, January 21, 2012
A Very Happy Day
(This same post appears on our Caring Bridge site. Reposting here for convenience.)
Sorry for the delay in getting this out - a really busy day yesterday, but a really, really happy one for us all. I also apologize for another really long post. I’m going to try to address the big picture for what lies ahead for Daniel here for those who have been wondering & asking – along with the possibility that Daniel may already have been completely, supernaturally healed of this. So it’s going to be long. But I’ll start with a quick summary. Please also see our Prayer Requests at the very end.
BACK TO DANIEL:
SUPERNATURAL?
At that point, I decided to put my real question to her. I told her briefly about our trip to see the Christian "healer" and that he had pronounced Daniel to be completely cured. I said, "I'm not asking you to accept or believe any of this, my question to you, as a medical professional, is simply that IF this were true and Daniel had been completely healed, is there any way that we could confirm that with testing?" She stared at me for a minute, but it wasn't a look of disbelief or consternation, she was really thinking hard about my question. I spoke up again and said, "I'm really expecting to hear that there's no way to tell by the tests we have whether the results are due to really effective chemo or from something supernatural - but I wanted to either confirm that or have you tell me that there is a test that we might expect to be different if something supernatural had happened." She looked a bit relieved and confirmed what I already figured - at least for this particular test. If the results had been bad, we would certainly have known the answer. And in fact if they even had been normal (i.e. they still found a few cancer cells, but lower in number than the first test), we would have known that Daniel had not been completely healed. But the fact that we found none after only two weeks does sometimes happen with chemotherapy alone. So at this point either is certainly possible, but we can’t know for sure “scientifically”.
HOWEVER, two weeks from now, at the Day 29 test, things might be different. They will still do the same microscopic analysis here at Riley, but they will also send out the sample to a very special lab for a much more in-depth test that will look at a much larger portion of the sample. And though I didn't get as solid an answer as I'd have liked, I think she agreed with my suggestion that, if that test came back and said they found no cancerous cells anywhere in the sample, that would be an indication of something beyond the expectations of chemotherapy alone. I will still need a strong confirmation directly to me before I would consider pulling Daniel off of chemotherapy, but a genetic lab test result of zero "blasts" (cancerous cells) would be very dramatic indeed! I’ll be talking further with the docs if we see something like that in two weeks.
Sorry for the delay in getting this out - a really busy day yesterday, but a really, really happy one for us all. I also apologize for another really long post. I’m going to try to address the big picture for what lies ahead for Daniel here for those who have been wondering & asking – along with the possibility that Daniel may already have been completely, supernaturally healed of this. So it’s going to be long. But I’ll start with a quick summary. Please also see our Prayer Requests at the very end.
SUMMARY:
Daniel’s
chemo treatment and bone marrow test yesterday were both very successful and he’s
almost entirely without pain today. We
consider this to be nothing short of miraculous given how difficult the
procedure was for him last time. We thank the huge number of people praying for
Daniel, the doctors, and our family through all this. The test results, rather unexpectedly show Daniel
to already (after only 2 weeks) to be in remission … NO CANCER CELLS were found
in the preliminary lab tests (2 weeks ago he had around 70% cancer cells in his
bone marrow if my memory is correct).
This may or may not be due to a direct supernatural healing, but it
certainly doesn’t rule it out. It’s not “normal”,
but certainly not unheard of to show a zero count after only two weeks of
chemo. The next test in 2 weeks, may be
a better indicator as to whether something really unusual has taken place. J Daniel is doing very well and is almost pain
free; a huge difference from the first procedure. This may be because his bones
are softer from the chemotherapy, it may be because his marrow is thinner (also
from the chemo), or it may be because half the planet has been praying for our
little guy and we have a wonderful, gracious, God who’s got our little guy
firmly in the palm of His mighty hand. I
know where my money is. J
THE REST OF THE STORY:
Though
our diagnosis had changed last week back to something pretty positive, we were
dreading yesterday's test results simply because we knew they were so
important to Daniel's overall prognosis and the road that would likely lie
ahead for us. We were doing our best to walk in faith and trust that,
even with bad outcome, things were still eventually going to be OK. And despite
the enormous amount of prayer that our whole family has been bathed in over the
last couple weeks, despite our awesome our God is, and despite being in one of
the best children's hospitals in the world, it's been hard; really hard;
considering what's at stake for us.
A.L.L. LEUKEMIA & TREATMENT OPTIONS:
In general, the approach to treat this type of leukemia is to hit it hard with chemotherapy for the first month and see what happens. We’re trying to kill off all the cancerous cells in existence in his body and then let the good ones rebuild his cell counts. If the cancer responds well (by dying!!), then we continue on a regimen of chemotherapy that will last, in total, for about 3 years. The first 2 months are the worst (most intense with the worst side-effects) and then things slack off gradually out into a maintenance phase for the last couple years. If things do not go well then there are several options depending on the exact nature of how the cancer is responding. In general:
The first option is to use the chemotherapy even more aggressively and see if it can be brought under control that way. Chemo is always preferred because of the risks in the next two options
The second option is stem cell replacement therapy. This is similar to the third (bone marrow replacement). It's less invasive and has lower risk of rejection, but is also much newer and takes much longer for the patient to get back to normal if it works.
The third option is bone marrow replacement. It's dependent on finding a suitable donor and very risky. Firstly, the new marrow has to "take" (graft in well and continue to grow) and secondly, there is the possibility that the patient's (host's) body will recognize the new bone marrow cells as "invaders" and attack them like a virus. This is really bad leaving very few possible solutions.
In general, the approach to treat this type of leukemia is to hit it hard with chemotherapy for the first month and see what happens. We’re trying to kill off all the cancerous cells in existence in his body and then let the good ones rebuild his cell counts. If the cancer responds well (by dying!!), then we continue on a regimen of chemotherapy that will last, in total, for about 3 years. The first 2 months are the worst (most intense with the worst side-effects) and then things slack off gradually out into a maintenance phase for the last couple years. If things do not go well then there are several options depending on the exact nature of how the cancer is responding. In general:
The first option is to use the chemotherapy even more aggressively and see if it can be brought under control that way. Chemo is always preferred because of the risks in the next two options
The second option is stem cell replacement therapy. This is similar to the third (bone marrow replacement). It's less invasive and has lower risk of rejection, but is also much newer and takes much longer for the patient to get back to normal if it works.
The third option is bone marrow replacement. It's dependent on finding a suitable donor and very risky. Firstly, the new marrow has to "take" (graft in well and continue to grow) and secondly, there is the possibility that the patient's (host's) body will recognize the new bone marrow cells as "invaders" and attack them like a virus. This is really bad leaving very few possible solutions.
DETERMINING WHICH PATH TO TAKE
The doctors figure out which path to take by watching how well the first rounds of chemotherapy work. Initially, Daniel had a bone marrow aspiration and biopsy done to find state of the leukemia before treatment began (a “baseline”). That was 2 weeks ago when we checked into the hospital. The procedure itself didn't go well and took 2 doctors and 3 tries to get what they needed. He couldn't walk for 2-3 days afterward & said it hurt worse than the surgery to install the port in his chest. They found that cancerous cells made up 70% of his bone marrow. They determine this by taking a tiny portion of the material and looking at it under a microscope. They literally count the number of good & bad cells they see on that one slide. I believe this is done largely by computer, but not entirely sure.
Usually, they wait until the first month is complete (29 days to be exact) and then take another look at the marrow. If all is going well and responding to the chemo, then the goal is to be "cancer free" by day 29. "Cancer free" (aka "remission") does not mean there are no cancer cells left in the body; it means they can't see any on the one slide taken from the one sample of the one spot in his bone marrow. It's a good test and even with modern more advanced techniques, it still remains the basis for pronouncing a patient to be "in remission". If the patient is not in remission, then they start making changes to the therapy process (the exact, step-by-step procedure for the therapy is called a “protocol” and is created and shared by hospitals across the nation based on thousands of cases studied in various trials. Fascinatingly, these are much, MUCH better for kids than for adults. We’re pretty thankful for Daniel’s sake that the children’s hospitals do such a great job with these studies and sharing information. That the adult hospitals don’t share this level of scientific discipline and communication is infuriating. We’re trying to get Andrea moved to Riley, but so far no luck. He he. :-)
As I stated though, “remission” at this point does not mean there are no cancer cells anywhere in the body. Only a single cancerous cell anywhere in the body is capable of starting the whole thing over. And “recurrence” as it is called, is much nastier and harder to treat. So the chemotherapy continues for about 3 years to make absolutely sure they get every last cell.
The doctors figure out which path to take by watching how well the first rounds of chemotherapy work. Initially, Daniel had a bone marrow aspiration and biopsy done to find state of the leukemia before treatment began (a “baseline”). That was 2 weeks ago when we checked into the hospital. The procedure itself didn't go well and took 2 doctors and 3 tries to get what they needed. He couldn't walk for 2-3 days afterward & said it hurt worse than the surgery to install the port in his chest. They found that cancerous cells made up 70% of his bone marrow. They determine this by taking a tiny portion of the material and looking at it under a microscope. They literally count the number of good & bad cells they see on that one slide. I believe this is done largely by computer, but not entirely sure.
Usually, they wait until the first month is complete (29 days to be exact) and then take another look at the marrow. If all is going well and responding to the chemo, then the goal is to be "cancer free" by day 29. "Cancer free" (aka "remission") does not mean there are no cancer cells left in the body; it means they can't see any on the one slide taken from the one sample of the one spot in his bone marrow. It's a good test and even with modern more advanced techniques, it still remains the basis for pronouncing a patient to be "in remission". If the patient is not in remission, then they start making changes to the therapy process (the exact, step-by-step procedure for the therapy is called a “protocol” and is created and shared by hospitals across the nation based on thousands of cases studied in various trials. Fascinatingly, these are much, MUCH better for kids than for adults. We’re pretty thankful for Daniel’s sake that the children’s hospitals do such a great job with these studies and sharing information. That the adult hospitals don’t share this level of scientific discipline and communication is infuriating. We’re trying to get Andrea moved to Riley, but so far no luck. He he. :-)
As I stated though, “remission” at this point does not mean there are no cancer cells anywhere in the body. Only a single cancerous cell anywhere in the body is capable of starting the whole thing over. And “recurrence” as it is called, is much nastier and harder to treat. So the chemotherapy continues for about 3 years to make absolutely sure they get every last cell.
BACK TO DANIEL:
In Daniel’s
case, they decided to do another aspiration (but not the biopsy, which involves
taking a bone chip as well) half way through the first month instead of waiting
till the end. This is probably because of the unusual chromosome
abnormality they found last week that gave us such a scare. So yesterday
was the half-way point and our first "window" into whether the chemo
was working. It wouldn't change the treatment for this first month
regardless of the results, but it would tell us pretty clearly whether he was
responding and what lay ahead for us. And we were all really nervous about it. Daniel of course was
really dreading the procedure itself and was also, and rightly so after the
first one. But he was also really
anxious about the results.
YESTERDAY’S PROCEDURE:
Having learned my lesson during the first procedure, I stepped outside the room while they performed it. Now in my own defense, I do NOT have a weak stomach! :-) I've watched dozens, maybe hundreds of procedures for everything from face transplants to brain surgery to hip replacements to open heart surgeries on TV. I've watched several actual procedures, both live, and through the endoscope on Andrea, and was personally present in the OR during Daniel's C-section birth. Such things have always fascinated me, and if I had a better memory, I’d have likely gone to med school myself. But two weeks ago, when they performed this simple procedure on Daniel, I very nearly passed out ... twice!! I had to leave the room and sit down and even that wasn't enough. I actually had to lay down on a bed in the recovery room to keep from going out. Once I recovered, I went back in, but had to leave again in less than 2-3 minutes. It wasn't the procedure, it was the fact that they were doing this to my beloved son Daniel. I learned something about myself. And though I desperately wanted to be there for him, it wouldn't have been helpful to anyone for me to end up as a distraction on the floor! So I stepped out of the room. Fool me once …
No more than 4-5 minutes later, the door opened and they were done and Daniel was already awake and ordering lunch!! I was shocked. My immediate thought was simply PRAISE GOD!!! And my second thought was that this was clearly a direct answer to an enormous number of prayers offered up by people literally all over the world on my son's behalf. I cried.
Within about a half an hour (shockingly fast actually) the doctor showed up (we hadn’t seen her at all yet that day as she wasn't even working the clinic yesterday. But went straight to the lab after Daniel's procedure to learn the results and came to report them straight to us. I REALLY like Dr. Hege! :-) She walked in with a big smile on her face and reported that here, at only week two, Daniel had ZERO cancer cells found on the slide and was now considered in remission. You could have knocked me over with a feather. All three of us cheered! I proceeded to grill the doctor with technical questions (as they’ve apparently come to expect now) as well as making it clear to her that we were not upset with her at all for last week’s confusion about the genetic test results. She was grinning from ear to ear along with us.
Having learned my lesson during the first procedure, I stepped outside the room while they performed it. Now in my own defense, I do NOT have a weak stomach! :-) I've watched dozens, maybe hundreds of procedures for everything from face transplants to brain surgery to hip replacements to open heart surgeries on TV. I've watched several actual procedures, both live, and through the endoscope on Andrea, and was personally present in the OR during Daniel's C-section birth. Such things have always fascinated me, and if I had a better memory, I’d have likely gone to med school myself. But two weeks ago, when they performed this simple procedure on Daniel, I very nearly passed out ... twice!! I had to leave the room and sit down and even that wasn't enough. I actually had to lay down on a bed in the recovery room to keep from going out. Once I recovered, I went back in, but had to leave again in less than 2-3 minutes. It wasn't the procedure, it was the fact that they were doing this to my beloved son Daniel. I learned something about myself. And though I desperately wanted to be there for him, it wouldn't have been helpful to anyone for me to end up as a distraction on the floor! So I stepped out of the room. Fool me once …
No more than 4-5 minutes later, the door opened and they were done and Daniel was already awake and ordering lunch!! I was shocked. My immediate thought was simply PRAISE GOD!!! And my second thought was that this was clearly a direct answer to an enormous number of prayers offered up by people literally all over the world on my son's behalf. I cried.
Within about a half an hour (shockingly fast actually) the doctor showed up (we hadn’t seen her at all yet that day as she wasn't even working the clinic yesterday. But went straight to the lab after Daniel's procedure to learn the results and came to report them straight to us. I REALLY like Dr. Hege! :-) She walked in with a big smile on her face and reported that here, at only week two, Daniel had ZERO cancer cells found on the slide and was now considered in remission. You could have knocked me over with a feather. All three of us cheered! I proceeded to grill the doctor with technical questions (as they’ve apparently come to expect now) as well as making it clear to her that we were not upset with her at all for last week’s confusion about the genetic test results. She was grinning from ear to ear along with us.
SUPERNATURAL?
At that point, I decided to put my real question to her. I told her briefly about our trip to see the Christian "healer" and that he had pronounced Daniel to be completely cured. I said, "I'm not asking you to accept or believe any of this, my question to you, as a medical professional, is simply that IF this were true and Daniel had been completely healed, is there any way that we could confirm that with testing?" She stared at me for a minute, but it wasn't a look of disbelief or consternation, she was really thinking hard about my question. I spoke up again and said, "I'm really expecting to hear that there's no way to tell by the tests we have whether the results are due to really effective chemo or from something supernatural - but I wanted to either confirm that or have you tell me that there is a test that we might expect to be different if something supernatural had happened." She looked a bit relieved and confirmed what I already figured - at least for this particular test. If the results had been bad, we would certainly have known the answer. And in fact if they even had been normal (i.e. they still found a few cancer cells, but lower in number than the first test), we would have known that Daniel had not been completely healed. But the fact that we found none after only two weeks does sometimes happen with chemotherapy alone. So at this point either is certainly possible, but we can’t know for sure “scientifically”.
HOWEVER, two weeks from now, at the Day 29 test, things might be different. They will still do the same microscopic analysis here at Riley, but they will also send out the sample to a very special lab for a much more in-depth test that will look at a much larger portion of the sample. And though I didn't get as solid an answer as I'd have liked, I think she agreed with my suggestion that, if that test came back and said they found no cancerous cells anywhere in the sample, that would be an indication of something beyond the expectations of chemotherapy alone. I will still need a strong confirmation directly to me before I would consider pulling Daniel off of chemotherapy, but a genetic lab test result of zero "blasts" (cancerous cells) would be very dramatic indeed! I’ll be talking further with the docs if we see something like that in two weeks.
CURRENT STATUS:
As of
today, Daniel is doing well. His appetite has been VORACIOUS and he’s put on
over 7 pounds in the past 2 weeks – that’s more than 10% increase in body
weight. Think of 10% of your own body
weight to get an idea of what that means for him. He’s gotten up at 5:30 or even 3:30
starving and unable to sleep several times with strong food cravings. This is becoming it’s own concern, not just
for the rapid weight gain, but it’s having effects on his digestive tract as
well. This is an expected side-effect of
the steroids as is additional swelling around the face and neck making him look
even bigger than just the weight gain alone.
He’s embarrassed about it and we’re working with him to put limits on
what and the amounts he’s allowed to eat, but it’s being hard on him either
way. He’s beginning to have more trouble
with indigestion and sores in his mouth (One of the chemo drugs attacks the
lining of the digestive tract and can cause these sores throughout.)
His blood
cell counts were also the lowest we’ve seen them yesterday. They gave him transfusions of both red cells
and platelets. Unfortunately, white
cells can’t be transfused since each white cell must be individually “programmed”
by our bodies or they will actually consider a new body to be an “invader” and
attack it. So Daniel is even more at
risk of infection and will likely continue to be for at least the next couple
weeks. After that we hope to see his own
healthy cells starting to come back again.
PRAYER REQUESTS:
Please
pray that ...
On-Going:
Above all - that the lessons available to us all in this trial would not be lost or minimized, and that our wonderful God would be glorified through it all.
Above all - that the lessons available to us all in this trial would not be lost or minimized, and that our wonderful God would be glorified through it all.
1. Full healing for Daniel and direct, clear confirmation to Dad - whether
supernaturally, or through docs / test results.
If the above is NOT in God's immediate will for us, then...
2. Daniel's blood counts (red, white, platelets, & hemoglobin) will return to higher levels quickly
If the above is NOT in God's immediate will for us, then...
2. Daniel's blood counts (red, white, platelets, & hemoglobin) will return to higher levels quickly
3. That Daniel will NOT get any type of infection during the course of his
treatment (while his immune system is compromised)
4. That the side-effect of the chemotherapy will be minimized (ravenous
appetite, hair loss, immune system suppression, damage to internal organs &
other tissues, etc.)
5. "Love, joy, peace, patience, goodness, kindness, gentleness,
self-control" (you should recognize that list), along with strength,
courage, faith, and hope for all us.
Current Issues:
Current Issues:
6. Continued healing for Andrea’s cold and that the rest of the family will not
catch it (Daniel, Tim, Dan, Sherry)
7. That Andrea’s own side-effects from
her chemotherapy (she gets hers daily in the form of a pill) will be minimized
and that she will have the energy and positive attitude to continue to cope
with all this and care for Daniel while I’m away at work or working on the
house)
8. Daniel's appetite, cravings, etc. will
be better controlled to minimize the weight gain and impacts to his digestive
system and health.
9. That we will be able to get the house thoroughly
cleaned back together in short order so that we can all get back home ASAP.
10. That my folks, who have been so gracious
and patient with us will remain so, will have minimal impact to their own
lives through our stay with them, and will be blessed powerfully by God for
their gifts and grace toward us.
Grace and Peace to all
- Tim -
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