Sharing a recent event ...
For the past few weeks, we've been trying to clean out Daniel's
toys. Approximately a year ago, we boxed up 8 full totes worth and stuck
them in the attic hoping that the "out of sight-out of mind" addage
would produce a lessened response to trying to get rid of a lot of them -
especially at the local Clothing Sale this summer. We did get rid of several totes worth, but still, the overall
total continues to grow. For now, considering all he's going through, that's just fine. We'll deal with the situation more forcefully some time in the future, but for now, many of these toys I consider a part of his "medicine" / therapy.
One night recently, Daniel
was sleeping back in his castle bed after many many months down in the
Family Room due to his impaired immune system with the leukemia. I
climbed the castle stairs to say good night and was greeted with the usual
sight of a bed filled, not only with my son, but a plethora of pillows
and untold numbers of stuffed animals. Being in cleaning / decluttering
mode as we were, I suggested that he take some time the next day to
go through is stuffed animals to sort out a few to get rid of - perhaps
to some other kids younger than him. You'd have thought I'd shot him.
"NO!!"
he exclaimed and as I began to formulate my argument, he went on to
explain with tears welling up in his eyes that he knows each one of
his animals by name and thinks of them as his closest friends. He remembers where they came from and individual memories and
feelings associated with each of them. He looked me straight in the eye
and, with absolute seriousness stated, "each one has a special place in
my heart".
I was speechless. I knew instantly that
no argument I could make could possibly counter that and gave up the
fight then and there. "OK" I said, "I can respect that". I kissed him
good night and climbed down the castle stairs designing a new shelving
system in my head to get the stuffed animals up out of the way
somewhere. Clearly they were going to be around for awhile. But
now, they have my full blessing as members of the family. If they ever do leave, it will be by Daniel's decision alone and will undoubtedly be a significant event in his life and almost certainly for a good cause as a gift specifically to someone else in need.
Sunday, August 19, 2012
Tuesday, August 14, 2012
No Piggy Flu Here!
Passing on Andrea's latest CaringBridge post on Daniel & us.
Mirrored from http://www.caringbridge.org/visit/danieljmiller/journal
Mirrored from http://www.caringbridge.org/visit/danieljmiller/journal
No piggy flu here!
Written by Andrea Miller
Quick update on Daniel. He was put into quarantine at Riley pending the outcome of the cultures taken for bacterial and viral infections. This meant we also had to be in a gown, mask and gloves the whole time we were with him in the room. REALLY was not comfortable. Don't know how Tim did it sleeping in that.
He was released late Sunday afternoon as the bacterial cultures had not grown anything during the 24 hr time period needed. He is still coughing and tired. His hair, which had pretty much grown back, is now falling out by the fistful. His counts are still very low, but beginning to make a gradual come back. His clinic apt. for this week was canceled since it was count dependent and was very unlikely his would be anywhere near the min.needed to begin the 2nd half of this phase of treatment.
Today Tim got a message from his Dr. that they did get a positive culture on the viral test. He has Parainfluenza - mild case of the flu (go here for description:
He was released late Sunday afternoon as the bacterial cultures had not grown anything during the 24 hr time period needed. He is still coughing and tired. His hair, which had pretty much grown back, is now falling out by the fistful. His counts are still very low, but beginning to make a gradual come back. His clinic apt. for this week was canceled since it was count dependent and was very unlikely his would be anywhere near the min.needed to begin the 2nd half of this phase of treatment.
Today Tim got a message from his Dr. that they did get a positive culture on the viral test. He has Parainfluenza - mild case of the flu (go here for description:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002346 )
The description of his symptoms is right on target. We are so thankful that he did not have the new strain of Swine Flu that they have been seeing at Riley. There is no treatment for this, other than just watching to be sure cough doesn't worsen, temp doesn't go up again, or any other symptoms develop. I too seem to have caught the same thing as I've been coughing a lot and had a runny nose and achy.
He'll be very limited on activities as we minimize his exposure during recovery from this, as well as not expose any others to it. Thanks again to everyone who has been praying for him and us.
The description of his symptoms is right on target. We are so thankful that he did not have the new strain of Swine Flu that they have been seeing at Riley. There is no treatment for this, other than just watching to be sure cough doesn't worsen, temp doesn't go up again, or any other symptoms develop. I too seem to have caught the same thing as I've been coughing a lot and had a runny nose and achy.
He'll be very limited on activities as we minimize his exposure during recovery from this, as well as not expose any others to it. Thanks again to everyone who has been praying for him and us.
Adding my own thoughts (Tim):
It was indeed a rough weekend at the hospital having to constantly be dressed in full gown, mask, & gloves - even sleeping that way. Thankfully, Daniel's symptoms didn't worsen over the weekend. Unfortunately, they haven't really gotten much better either. And now it appears Andrea has it and it's trying to get me. I felt lousy all day but trying to kick its butt with lotsa vitamins, good food & rest. Usually I can stave off such things, but we'll see, the stress of recent events at home & work doesn't help.
It's been rough watching Daniel turn back around and start losing all his hair again ... really fast! It's everywhere and gets him really frustrated too find hand-fulls on his pillows and clothes. The doctor said it takes about a month after a particular chemo treatment before it actually starts making hair fall out, so we're seeing the effects of something he had a month ago - probably a drug called Doxorubicen, but even the doc wasn't 100% sure. He had three treatments with the last one having been as recent as 8/1. So if the effects don't show up for a month, then all we're seeing now was just from the very first one. So we're not holding out a lot of hope of keeping any of his hair this time. He actually had 4 treatments at the start of all this back in January and he only lost about 1/2 or 2/3 of his hair. But he's been through a lot more leading up to this time and some of the nurses have said it's common to lose it all on the 2nd round. We'll see. That will be hard on him.
During the stay in the hospital, Daniel discovered a WW-II video game they had for the Play Station 3 in his room that he really liked. I bought him a used copy for his Wii at home as his "prize" for having had to be admitted (we always try to reward his bravery with a gift of some kind when he has to be admitted - it has helped a LOT to have something positive to look forward too.) So he's REALLY been enjoying this game since we got home, and after 10 years of pestering from Dad, he's finally interested in something having to do with WW-II (a huge hobby / interest of mine). So of course I've been capitalizing on this big time and it's been a lot of fun for us in the evenings alternating between watching old WW-II movies and playing his new game on the Wii. :-) Any moments of "fun" (not to mention togetherness) we can pull out of all the bad things going on in his life right now, I latch onto with both hands!
As Andrea described, we've delayed the start of the 2nd half of this final intensive phase for at least a week. One last big push - about a month's worth - and we'll be into the Maintenance phase. Even that's nothing particularly easy, but it's a lot better than what we've been through and, hopefully, will become routine fairly quickly.
As always, we so VERY much appreciate your thoughts and prayers. And we ESPECIALLY appreciated the entire Horizon Youth group dropping by on Sunday just as Daniel & I were coming home from the hospital. They helped with cleaning the house and lots of yard work. Please keep all of us in your prayers to get past the flu invasion at our place quickly, and for Daniel to get through this last month of intensive chemo as quickly and courageously as possible. And of course, our standing prayer requests are always for complete healing, no complications, and for God to be glorified in all of this.
Please also remember to be praying for Joey, Elizabeth, and Nick Keller and to keep up with their CaringBridge site as well: http://www.caringbridge.org/visit/joeykeller
Grace and Peace to all,
- Tim -
Saturday, August 11, 2012
Prayer Request
A quick update after last night's longer post. Over night, Daniel has
developed a very "croupy" cough and is coughing up phlegm this morning.
So we definitely have an infection of some kind. With his counts being
as low as they are now, this is a serious concern. His fever is
creeping up just a bit this morning (now 100.8) and his heart rate
remains high bouncing as high as 160 when he's active. We had a round
of diarrhea this morning which was no fun at all on the ridiculous
little bucket chair thing they have instead of a real toilet in this
room.
Please pray with us that we can get on top of this as quickly as possible and it does not worsen and is not something difficult to fight.
- Tim -
Please pray with us that we can get on top of this as quickly as possible and it does not worsen and is not something difficult to fight.
- Tim -
Friday, August 10, 2012
Not So "Fair" After All
The past two years, Daniel had to miss the Indiana State Fair because of
his back problems (caused by compression fractures in his lower back
from what turned out to be osteoporosis). This year, despite the
leukemia and being deep in the midst of chemotherapy, he was feeling
pretty good when the fair came around, and his uncle Tom (no the other
one) was generous enough to offer to pay his way. The staff at Riley
warned us to stay away from the animal barns due to the possibility of
infection, but gave us the all-clear to go. This bothered me a lot and I
really didn't want him to go. Personally, I have no use for the fair
and couldn't care less about it, but both Andrea and Daniel absolutely
love it and REALLY didn't want to miss it a third year in a row. So in
the end, I caved in and let them go (I worked most of the day and then
tried to get some things done at home while they were both gone with the
rest of my family.
It turned out to be a rotten day for me, but Andrea and Daniel had an absolute blast on all the rides. Monday he was worn out & pretty tired, but otherwise seemed OK. I kept my fingers crossed, but apparently not tight enough. But Tuesday, he was complaining about lower back pain - far down a the very base of his spine and into his hips. He was moving pretty slowly and not feeling that well by the time he got to his regular clinic appt. on Tuesday. The only thing they did at clinic was to draw blood and look at his cell counts. They had all dropped drastically from the week before. Not good news, but not unexpected with this phase of chemotherapy (at least it wasn't to the hospital staff. No one had bothered to tell us that this was expected. Grrr.
By that night though, his back was completely locked up and he was in terrible pain. His prescription pain meds helped enough for him to get a little sleep and I slept beside him on an air mattress helping him through the night with going to bathroom, getting meds, drinks, etc. It was a long night. But he seemed to be doing better during the day on Wed. so we didn't call the doctor, but again on Wed night, it hit him hard - much harder even than Tuesday night and even the prescription meds weren't touching the pain. He was struggling hard with depression and hating life. We talked for a long time, I gave him the maximum dose of his meds around 12:30, hit it with both ice and heat, and eventually around 2a he drifted off to sleep in our bed where he thought the mattress was more comfortable.
Thursday we called back to Riley and explained the situation and they brought us in for an exam and X-rays. They were clear and the doc felt that it was really just a side effect of over-doing it at the fair on Sunday (now 4 days prior). But he was also beginning to complain of slight hearing problems, joint pains, and some mild tremors. The doctor and we chalked it up to the fair, the pain meds, and massive psychological overload.
By Thursday night, he was feeling better (and some stronger pain meds were working well), but he was also running a low-grade fever. REALLY not what I wanted to see! Thursday night we both slept downstairs again and it was a relatively uneventful night except he continues to have trouble sleeping and is still constantly hungry as he comes down off the steroids. But the fever was not going away. It was holding fairly steady between 100-101. 101 is the threshold at which we have to take him to the hospital regardless and ANY sign of infection in an immune-compromised cancer patient is considered a medical emergency.
If you've followed our story for long, you know we're no strangers to midnight trips to the ER with fevers. But Daniel was certainly in no mood to head back to Riley again now with a fever. But it topped 101 earlier today (Fri) and so off we went with Daniel EXTREMELY upset over these events.
When this happens, they do blood counts again, and also take "cultures" of his blood to see whether anything grows that would indicate a bacterial or viral infection. And if his blood counts are below a certain number (and they were), he is automatically admitted to the hospital so they can observe him, pump him with antibiotics, and wait to see what the cultures do over the next 48hrs. You can imagine his excitement at being told he was being admitted.
There was no room available in the usual 5th floor hematology/ Oncology (called "HemOnc") ward, so they found us a room in the Stem Cell ward next door. Because there is a risk that he has an infection, we're in a private room. That part is nice. I came up after a long day at work to relieve Andrea and spend the night with Daniel. This is our usual routine for admissions as Andrea has a terrible time on the chair/beds provided for parents here in the rooms. About the time I arrived, the doctor came in to do a nasal swab (insult to injury you know for poor Daniel) and we were told that they have already seen a few cases of a new strain of Swine Flu from kids who have attended local fairs - even those who didn't visit the animal barns. Great. Combined with the news from the Fair that they'd sent home all the piggies that day because they too were running fevers and the Fairgrounds didn't want to risk spreading infection among the pigs (yeah, what about us humans?) I was NOT a happy camper about having caved in and let him go in the first place. This trip to the Fair is getting more expensive by the day for our poor Daniel.
The most recent "insult" was around 10:00 or so when the nurse came in and informed me that I will now have to wear full gown, mask, and gloves any time I'm in the room with Daniel. I honestly thought he was kidding me, but that didn't last long. New hospital policy, you know. It's for the sake of the other kids on the ward and that part I very much DO get. So as I sit here sweltering and trying to type with gown, mask, and gloves at 2am, I'm wondering whether I'll be getting any sleep at all.
But of far, FAR more concern to me is the possibility of Daniel actually having contracted something serious with his immune system so weakened. In all honesty, it's been a real test of faith for me to stay strong about this and keep my eyes focused on the Prince of Peace. Blood tests and nose swabs won't have results back for at least 24 and probably 48 hours. His temp is down a little (99.8) but still not back to normal. His heart rate has remained elevated and even as he sleeps next to me is still reading 140. I don't like that either (below 100 is closer to normal).
So the next couple of days are going to be critical in seeing whether this is just a minor bug, or something more major. Fighting a nasty flu bug is bad enough with a healthy immune system! Obviously, we covet all the prayer we can get.
- For God to be glorified in all this and for His will to be done in our lives
- For complete healing
- For quick, clear test results
- For us NOT to catch anything new here at the hospital
- For no mistakes and good care here from doctors and nurses
- For Daniel's mental state and perseverance
- For Andrea and I to stay strong, healthy, and remain a positive example and provide wise counsel to Daniel
- For us not to miss any opportunities we may have to witness or serve others while we're in the midst of this.
A HUGE thank you to all our friends and relatives who have been walking this path with us - whether in person or "virtually". We covet, FEEL, and thank you for every prayer.
Ultimately, we rest in the knowledge that God keeps His promises. "And we KNOW that all things work together for good to those who love God, to those who are the called according to His purpose." (Rom 8:28). So we thank our loving Father in ALL circumstances ... including this one ... knowing that ultimately He will work this into a plan for His glory, for our good, and that will somehow benefit others. We may not see that good yet in this life - you never know. But when we consider what all this might look like to us in 100 or 1000 or even a million years from now - we can be absolutely certain that the "inconveniences" of this lifetime will be remembered only for the extent to which we allowed God to use them in our lives to shape our character (which of course we will take with us into eternity) or to bring Glory to Him. We pray only that we will trust Him enough to lead us through these valleys in such a way as to maximize the benefit - whatever that may be - of these trials.
To God be the glory both now and forever. He is always worthy. We believe and trust in You Lord. Help us to believe and trust You more.
Grace and peace to all,
- Tim -
Mirrored on our CaringBridge site here: http://www.caringbridge.org/visit/danieljmiller/journal
It turned out to be a rotten day for me, but Andrea and Daniel had an absolute blast on all the rides. Monday he was worn out & pretty tired, but otherwise seemed OK. I kept my fingers crossed, but apparently not tight enough. But Tuesday, he was complaining about lower back pain - far down a the very base of his spine and into his hips. He was moving pretty slowly and not feeling that well by the time he got to his regular clinic appt. on Tuesday. The only thing they did at clinic was to draw blood and look at his cell counts. They had all dropped drastically from the week before. Not good news, but not unexpected with this phase of chemotherapy (at least it wasn't to the hospital staff. No one had bothered to tell us that this was expected. Grrr.
By that night though, his back was completely locked up and he was in terrible pain. His prescription pain meds helped enough for him to get a little sleep and I slept beside him on an air mattress helping him through the night with going to bathroom, getting meds, drinks, etc. It was a long night. But he seemed to be doing better during the day on Wed. so we didn't call the doctor, but again on Wed night, it hit him hard - much harder even than Tuesday night and even the prescription meds weren't touching the pain. He was struggling hard with depression and hating life. We talked for a long time, I gave him the maximum dose of his meds around 12:30, hit it with both ice and heat, and eventually around 2a he drifted off to sleep in our bed where he thought the mattress was more comfortable.
Thursday we called back to Riley and explained the situation and they brought us in for an exam and X-rays. They were clear and the doc felt that it was really just a side effect of over-doing it at the fair on Sunday (now 4 days prior). But he was also beginning to complain of slight hearing problems, joint pains, and some mild tremors. The doctor and we chalked it up to the fair, the pain meds, and massive psychological overload.
By Thursday night, he was feeling better (and some stronger pain meds were working well), but he was also running a low-grade fever. REALLY not what I wanted to see! Thursday night we both slept downstairs again and it was a relatively uneventful night except he continues to have trouble sleeping and is still constantly hungry as he comes down off the steroids. But the fever was not going away. It was holding fairly steady between 100-101. 101 is the threshold at which we have to take him to the hospital regardless and ANY sign of infection in an immune-compromised cancer patient is considered a medical emergency.
If you've followed our story for long, you know we're no strangers to midnight trips to the ER with fevers. But Daniel was certainly in no mood to head back to Riley again now with a fever. But it topped 101 earlier today (Fri) and so off we went with Daniel EXTREMELY upset over these events.
When this happens, they do blood counts again, and also take "cultures" of his blood to see whether anything grows that would indicate a bacterial or viral infection. And if his blood counts are below a certain number (and they were), he is automatically admitted to the hospital so they can observe him, pump him with antibiotics, and wait to see what the cultures do over the next 48hrs. You can imagine his excitement at being told he was being admitted.
There was no room available in the usual 5th floor hematology/ Oncology (called "HemOnc") ward, so they found us a room in the Stem Cell ward next door. Because there is a risk that he has an infection, we're in a private room. That part is nice. I came up after a long day at work to relieve Andrea and spend the night with Daniel. This is our usual routine for admissions as Andrea has a terrible time on the chair/beds provided for parents here in the rooms. About the time I arrived, the doctor came in to do a nasal swab (insult to injury you know for poor Daniel) and we were told that they have already seen a few cases of a new strain of Swine Flu from kids who have attended local fairs - even those who didn't visit the animal barns. Great. Combined with the news from the Fair that they'd sent home all the piggies that day because they too were running fevers and the Fairgrounds didn't want to risk spreading infection among the pigs (yeah, what about us humans?) I was NOT a happy camper about having caved in and let him go in the first place. This trip to the Fair is getting more expensive by the day for our poor Daniel.
The most recent "insult" was around 10:00 or so when the nurse came in and informed me that I will now have to wear full gown, mask, and gloves any time I'm in the room with Daniel. I honestly thought he was kidding me, but that didn't last long. New hospital policy, you know. It's for the sake of the other kids on the ward and that part I very much DO get. So as I sit here sweltering and trying to type with gown, mask, and gloves at 2am, I'm wondering whether I'll be getting any sleep at all.
But of far, FAR more concern to me is the possibility of Daniel actually having contracted something serious with his immune system so weakened. In all honesty, it's been a real test of faith for me to stay strong about this and keep my eyes focused on the Prince of Peace. Blood tests and nose swabs won't have results back for at least 24 and probably 48 hours. His temp is down a little (99.8) but still not back to normal. His heart rate has remained elevated and even as he sleeps next to me is still reading 140. I don't like that either (below 100 is closer to normal).
So the next couple of days are going to be critical in seeing whether this is just a minor bug, or something more major. Fighting a nasty flu bug is bad enough with a healthy immune system! Obviously, we covet all the prayer we can get.
- For God to be glorified in all this and for His will to be done in our lives
- For complete healing
- For quick, clear test results
- For us NOT to catch anything new here at the hospital
- For no mistakes and good care here from doctors and nurses
- For Daniel's mental state and perseverance
- For Andrea and I to stay strong, healthy, and remain a positive example and provide wise counsel to Daniel
- For us not to miss any opportunities we may have to witness or serve others while we're in the midst of this.
A HUGE thank you to all our friends and relatives who have been walking this path with us - whether in person or "virtually". We covet, FEEL, and thank you for every prayer.
Ultimately, we rest in the knowledge that God keeps His promises. "And we KNOW that all things work together for good to those who love God, to those who are the called according to His purpose." (Rom 8:28). So we thank our loving Father in ALL circumstances ... including this one ... knowing that ultimately He will work this into a plan for His glory, for our good, and that will somehow benefit others. We may not see that good yet in this life - you never know. But when we consider what all this might look like to us in 100 or 1000 or even a million years from now - we can be absolutely certain that the "inconveniences" of this lifetime will be remembered only for the extent to which we allowed God to use them in our lives to shape our character (which of course we will take with us into eternity) or to bring Glory to Him. We pray only that we will trust Him enough to lead us through these valleys in such a way as to maximize the benefit - whatever that may be - of these trials.
To God be the glory both now and forever. He is always worthy. We believe and trust in You Lord. Help us to believe and trust You more.
Grace and peace to all,
- Tim -
Mirrored on our CaringBridge site here: http://www.caringbridge.org/visit/danieljmiller/journal
Thursday, August 9, 2012
Too Much Too Soon
We're back from Riley now. X-rays showed no obvious fractures to the vertebrae. Doctor Hill thinks this is a result of over doing it at the Fair on Sunday - I wasn't at all happy about him going to the fair, but in the end I relented because he'd wanted to so badly & missed the last 2 years with back problems. Did I make the wrong choice? I'm honestly not sure. The fun that he had with his cousins & grandparents may well have been worth this price to him. It will be interesting to see what Daniel thinks after this is all over. Strangely, my apprehension had more to do with him catching some infection while there. Another back injury never crossed my mind.
I can't remember a single time I ever ended up being glad I didn't go with my intuition. I'm usually pretty good at listening to it, but I gave in this time. One of these days I'll learn. :( (And BTW, for those of you thinking about this, there's a distinct difference between what I hear as my "gut" / "intuition" and hearing God speaking. I'm not completely clear as to the relationship between the two, but would lean more toward there being a connection than not. But that's a discussion for another time.
The doctor indicated that the steroids he's been on (just finished the current round) could well have added to the situation. We also know that one of the other chemo drugs has some strange side-effects that could have contributed as well. I asked him specifically about the possibility of a new CNS issue (cancer in the spinal column) and he was able to put my fears to rest ... whew! That's what had me bordering on panic the last 24hrs, so good to know this doesn't look anything like that.
So for now, we've got some better pain meds and orders for rest and heating pads for the next several days. Thanks to all who prayed for us the past couple days. Please keep them coming for quick healing and especially for his mental state. All this has been VERY hard on him psychologically and he goes in and out of some fairly serious depression. That may be the worse problem he's actually facing right now. Please pray for wisdom and discernment on our part as we deal with that aspect.
Thanks again for all you all do for us and for standing with us in this fight.
- Tim, Andrea, & Daniel -
Mirrored on our Caring Bridge site at: http://www.caringbridge.org/visit/danieljmiller/journal
Tuesday, July 17, 2012
A Mixed Bag
Mirrored on our CaringBridge site here: http://www.caringbridge.org/visit/danieljmiller/journal
After a week's delay to the start of our last intensive phase (next comes "maintenance"), today Daniel's blood counts were high enough to start the "Delayed Intensification" phase. We've been looking forward to this one with mixed emotions. It has all the promise of indeed being intense, but we're also looking forward to getting to the other end of it. There will be nothing easy about the next 3 years, but it will definitely be better than what we're facing for the next 2 months.
After a week's delay to the start of our last intensive phase (next comes "maintenance"), today Daniel's blood counts were high enough to start the "Delayed Intensification" phase. We've been looking forward to this one with mixed emotions. It has all the promise of indeed being intense, but we're also looking forward to getting to the other end of it. There will be nothing easy about the next 3 years, but it will definitely be better than what we're facing for the next 2 months.
Today started with the "good" news of decent blood counts and being able to start phase IV, but has pretty much gone downhill from there. Forgive me if this sounds like "venting", but that's what it is. It's been a tough day and I feel like sharing. Sorry to make you the beneficiaries, but think of it as a rolling prayer request. ha ha.
As I write this, Daniel has thrown up all his dinner and is now fighting the dry heaves. I think it's the extra heavy does of anesthetic he got, but not really sure. Could also be any of the three chemo drugs he got along with it.
During the spinal tap procedure they had trouble getting him completely "out". This has happened before and they just keep pumping the anesthesia into him until he goes out. But once he was finally out (the procedure itself went fairly smoothly) his heart rate & blood pressure dropped dangerously low. There was some concern for awhile, but he came back on his own and other than a little nausea, was doing fine and filling me in on all the components he needed to get in "Monster Hunter" (his favorite Wii game) to get to the next level.
I had gone into work this morning and was waiting for confirmation that his blood counts were a "go" before leaving for the hospital. Unfortunately, they were WAY late in getting the blood drawn and by the time I got word that we were g2g - I had to FLY down to the hospital to get there in time. By the time I got there, he was already in the O.R., prepped, and ready to go. He was upset and nervous as usual and his pulse was already passing 100. I took over from mom with a back & neck massage and started a conversation about Monster Hunter and we got it back down to the low 80s before the doctor arrived. I prayed through most of the procedure (since, if you recall from previous posts, the only time I can't watch a medical procedure is when it's this doctor and my son.) But other than a little trouble getting him "out", it went well this time (the doc's getting better! :)
Afterward, in the recovery room, we had the tense moments about the low B.P. and then Daniel was complaining of being cold. We were informed that the knob had broken off the thermostat and the vent was directly over the bed. (Great engineering guys - NOT.)
I had gone into work this morning and was waiting for confirmation that his blood counts were a "go" before leaving for the hospital. Unfortunately, they were WAY late in getting the blood drawn and by the time I got word that we were g2g - I had to FLY down to the hospital to get there in time. By the time I got there, he was already in the O.R., prepped, and ready to go. He was upset and nervous as usual and his pulse was already passing 100. I took over from mom with a back & neck massage and started a conversation about Monster Hunter and we got it back down to the low 80s before the doctor arrived. I prayed through most of the procedure (since, if you recall from previous posts, the only time I can't watch a medical procedure is when it's this doctor and my son.) But other than a little trouble getting him "out", it went well this time (the doc's getting better! :)
Afterward, in the recovery room, we had the tense moments about the low B.P. and then Daniel was complaining of being cold. We were informed that the knob had broken off the thermostat and the vent was directly over the bed. (Great engineering guys - NOT.)
As Daniel continued to wake up, I had a fairly long conversation with the doctor expressing my growing frustration at not getting any traction on his continued lack of growth. I think she finally "understood" me when I used the word "unacceptable". But we'll see. In fairness, this doctor is somewhat caught in the middle between me and the other doctors who are the ones that need to be looking at these other issues. As the oncologist, what I'm after is not her specialty, yet she is the one through whom everything has to go. Anyway, we'll see how this plays out. I realize nothing is going to happen physically until we're through this intensive phase, but what I'm not happy with is that there is no discussion, no plan, no ownership, and no "next step" in place. Is that the engineer, the project manager, or the DAD in me coming out? Doesn't really matter - they're stuck with me.
As we prepared to leave, we go the low-down on what the rest of this phase will look like. Unfortunately, one of the primary drugs they'd wanted to give him ("Pegallated Aspariginase") turns out to give him a fairly severe allergic reaction. They tried twice and then gave up a couple months ago. So the "plan B" is a different drug that has to be given 6 times (on 6 different days) for each single dose the Peg-Asp. would have been given. This means we're heading back to Riley every other day for a week and a half each time.
Hmmm. Didn't know that.
We also found out, it can't be administered through his port. It has to be given my intramuscular injection - in the thigh.
Hmmm. Didn't know that.
Depending on the dosage he'll receive (which they didn't have yet today), they may have to give half of it in two different locations ... one in each leg ... every other day ... for a week and a half ... and they HURT.
Hmmm. Didn't know that.
Daniel REALLY doesn't do well with needles (yes, even after all he's been through). As they were describing to us where to apply the Lidocane (a topical anesthetic cream) before he comes in, he caught on. We played it way down talking about how much smaller injection needles are than the blood-draw and access needles he's used to. I think we made some progress there. But the fact that these injections will make the muscle hurt didn't come up. That's going to be a big problem ... especially as they keep injecting into the same area every other day. This will be rough ... very rough.
My mood was going downhill fast this afternoon. As we left, we stopped by the pharmacy downstairs where the doctor had called in a prescription about 45 min earlier, only to be informed it would be another 30-45 minutes. Great.
As we sat there waiting, Andrea and I were talking about some financial issues predicated by our Family Doctor that I won't go into except to say that it didn't do my deteriorating mood any good at all. I left Andrea & Daniel in the pharmacy waiting area and headed back to work since we'd driven separately. The rest of the day at work didn't go much better, but at least I got 7 hours in. How productive they were was another matter as my head was in a million other places.
As I left work, I found myself at the tail end of the thunderstorm that blew through minutes earlier. REALLY need the rain - but did it have to be right when I wanted to drive home ... and in the same direction. I know - gift horses and all that. As I pulled in the drive way, I was accosted by the pesky little neighbor girl who was adamant that she needed to come in the house with me - if not to play with Daniel (whom I told her was not feeling well), then to be allowed to cook the can of soup she was carrying around in our microwave. What?! So I got this convoluted story about how they don't have a microwave, and couldn't find the cord to the hot plate, and the stove costs too much money, and ... Um no; not playing this game. You'll have to have your parents get you something to eat. I'll have to find out what all that was about another time, but not tonight.
Since I got home, Daniel has been getting more and more nauseated until he finally lost all his dinner and now is fighting the dry heaves. I can't even get an anti-nausea pill into him for fear it'll just come right back up. He feels miserable. The good news is that this has been a very rare thing for him to get this sick. The bad news is that he's this sick. He's supposed to start another oral chemo drug tonight, but I'm obviously not giving it to him in this condition. He's had enough for one day, and it can wait an extra day.
Andrea has been through the ringer these past few days (actually, I could just as easily insert "weeks", "months" or "years" there too) as well. We think she's had a stomach bug and the family doctor she visited yesterday thought the same thing. She'd done a sleep study a couple weeks ago and this visit was supposed to be reviewing the results, but they didn't seem to notice that they hadn't yet received them from the hospital yet. So despite frantic, last-minute calls, that didn't happen. So now there will be another office visit once the results are in. They'll no-doubt prescribe another several pills for her to start taking that won't be covered by insurance and will add to the hand-full she takes every day as it is. I think I'll be attending that next meeting as well if at all possible. Hope I don't need to start looking for another family doctor again, but I won't hesitate if I think things are not going in the right direction.
OK, I'm going to stop there. My apologies if you've made it this far. I feel better. LOL. :) The truth is, we have an ENORMOUS amount to be thankful for that we DO know about, and way more than we could dream of that we don't know about, but Scripture promises. I have a wonderful family and we're together this day and the future looks bright - next month, next year, and 1000 years from now. We have much goodness to look forward too. We knew this phase was going to be a mountain that needed climbing. It's height and ruggedness came a little more into view today, but it will just be that much sweeter to be on the other side of it WHEN we get there ... and we will.
Lord please let us learn ALL that you have planned for us in these coming days - don't let any single second of difficulty or pain or struggle be lost for the good that You desire to bring from it. We cling desperately to your promise that A.L.L.(*) things work together into a pattern for good ... (Rom 8:28) Thank you. Thank you for everything about today. Thank you for loving us and being here beside us every step of the way and for keeping our eyes on the far horizon. Teach us to trust, teach us to love, teach us to enjoy "life in every breath."
Amen! Thanks to everyone who is also running this race alongside us or cheering or handing us a water bottle on the way by. We love you and appreciate every one of you. Please keep your prayers coming - they are by FAR what we value and covet the most.
Since I got home, Daniel has been getting more and more nauseated until he finally lost all his dinner and now is fighting the dry heaves. I can't even get an anti-nausea pill into him for fear it'll just come right back up. He feels miserable. The good news is that this has been a very rare thing for him to get this sick. The bad news is that he's this sick. He's supposed to start another oral chemo drug tonight, but I'm obviously not giving it to him in this condition. He's had enough for one day, and it can wait an extra day.
Andrea has been through the ringer these past few days (actually, I could just as easily insert "weeks", "months" or "years" there too) as well. We think she's had a stomach bug and the family doctor she visited yesterday thought the same thing. She'd done a sleep study a couple weeks ago and this visit was supposed to be reviewing the results, but they didn't seem to notice that they hadn't yet received them from the hospital yet. So despite frantic, last-minute calls, that didn't happen. So now there will be another office visit once the results are in. They'll no-doubt prescribe another several pills for her to start taking that won't be covered by insurance and will add to the hand-full she takes every day as it is. I think I'll be attending that next meeting as well if at all possible. Hope I don't need to start looking for another family doctor again, but I won't hesitate if I think things are not going in the right direction.
OK, I'm going to stop there. My apologies if you've made it this far. I feel better. LOL. :) The truth is, we have an ENORMOUS amount to be thankful for that we DO know about, and way more than we could dream of that we don't know about, but Scripture promises. I have a wonderful family and we're together this day and the future looks bright - next month, next year, and 1000 years from now. We have much goodness to look forward too. We knew this phase was going to be a mountain that needed climbing. It's height and ruggedness came a little more into view today, but it will just be that much sweeter to be on the other side of it WHEN we get there ... and we will.
Lord please let us learn ALL that you have planned for us in these coming days - don't let any single second of difficulty or pain or struggle be lost for the good that You desire to bring from it. We cling desperately to your promise that A.L.L.(*) things work together into a pattern for good ... (Rom 8:28) Thank you. Thank you for everything about today. Thank you for loving us and being here beside us every step of the way and for keeping our eyes on the far horizon. Teach us to trust, teach us to love, teach us to enjoy "life in every breath."
Amen! Thanks to everyone who is also running this race alongside us or cheering or handing us a water bottle on the way by. We love you and appreciate every one of you. Please keep your prayers coming - they are by FAR what we value and covet the most.
Please also remember to pray for Joey, Nick, and Elizabeth Keller as often as possible.
I'm off to set up the air mattress beside Daniel's bed for the night.
Grace and Peace,
- Tim -
Thursday, July 12, 2012
Daniel & Joey
Mirrored from http://www.caringbridge.org/visit/danieljmiller/journal
Daniel & Joey
It's been a good couple of weeks for the Millers. We completed Daniel's last "planned" hospital admission and thereby, the last portion of the "Interim Maintenance" phase of chemotherapy near the end of June. We had about a week and a half of "vacation" before the start of the next phase (called "Delayed Intensification") and so we quickly put together Daniel's 10-1/2 year birthday party. A few years ago, we moved his party to the summer time so he could do more with his friends, take advantage of warm weather, and not be lost in the midst of the December holidays.
Grace and peace,
It's been a good couple of weeks for the Millers. We completed Daniel's last "planned" hospital admission and thereby, the last portion of the "Interim Maintenance" phase of chemotherapy near the end of June. We had about a week and a half of "vacation" before the start of the next phase (called "Delayed Intensification") and so we quickly put together Daniel's 10-1/2 year birthday party. A few years ago, we moved his party to the summer time so he could do more with his friends, take advantage of warm weather, and not be lost in the midst of the December holidays.
This year, it was a bit harder to get planned and executed, but other than the short notice to friends and family, it went off very well. We even had great weather and temps below 90 at the very end of the heat wave. God is good. Daniel came home with more LEGOs and having had lots of fun with his friends and cousins as Southeastway Park. Many thanks to all who attended - in person or in spirit.
Tuesday, we were to start the Delayed Intensification phase - the last intensive phase before going into "Maintenance" which will last about 3 years. Unfortunately, his white blood cell count was too low and we were sent home to wait another week. In truth, none of us were too upset. The good news is that, although it will push out the end of this phase, it won't push out the final completion date. But at this point, that's so far down the road, it's hardly even worth thinking about. We'll be glad to get through this last intensive phase that none of us have been looking forward to.
Tuesday, we were to start the Delayed Intensification phase - the last intensive phase before going into "Maintenance" which will last about 3 years. Unfortunately, his white blood cell count was too low and we were sent home to wait another week. In truth, none of us were too upset. The good news is that, although it will push out the end of this phase, it won't push out the final completion date. But at this point, that's so far down the road, it's hardly even worth thinking about. We'll be glad to get through this last intensive phase that none of us have been looking forward to.
In general, Daniel's energy and appetite have been slowly recovering and having the extra week off is probably a good thing. I've been pushing him to get more sunshine (which ironically has been more difficult with the searing heat wave we just came through), fresh air and exercise. We're getting there gradually, but the months of inactivity have led to some bad habits of video games, TV, and lounging around indoors that are proving hard to break. Andrea has gotten him out for some play-days and a swim day recently though that's been good for him ... mostly.
The mysterious white cell count continues to bounce around all over the place though, and is often frustratingly low. It's an indicator of his immune system (but not his actual health). The Riley staff tell us that it could be almost anything that causes it to remain low, but is likely due to minor bacterial or viral infections. I believe this must be due to exposure to various bugs "going around" either through Andrea & I having been exposed and bringing them home, or directly from interactions with his friends. Andrea and I can't do much about our own exposures, so it's really difficult to try to find a balance between wanting to let him play with his friends and my instinct to want to keep him in a "bubble". I believe very strongly that the psychological side of our health is every bit as important as the physical side. If he stays lonely and depressed, I feel he's likely to remain more "sickly" than being able to laugh and run and play even if it means exposure to more infectious agents. It's difficult to find the balance and the disagreements between Andrea and I have at times been rather unpleasant. We're working through it and trying to find the best ways to communicate and find agreement in the day-to-day decisions and activities.
Unfortunately, Andrea's health has been quite a roller-coaster ride recently as well. She's been knocked completely out of commission several times lately and has a lot of trouble just finding the energy (much less enthusiasm) to even get out of bed in the morning. Her courage, character, (and Facebook) keep her going though. :-) It does make it more challenging for me to try to keep up with work as well as the household chores. Cleaning in particular is something I need to do a lot better at keeping up with for both Daniel's and Andrea's sakes. Seeing his persistently low blood count numbers and her constant battles with various bugs really drive this home.
When Daniel and I showed up at Clinic on Tuesday, we were happily surprised to have Joey and Elizabeth Keller join us in the waiting room. Daniel & Joey got to spend a few brief minutes linking their Nintendo DSes together to play Super Mario Cart (or something like that) while Eliz and I talked about our respective challenges. Unfortunately, theirs currently dwarf anything I can even imagine much less relate to.
We were able to attend Joey's 9th birthday party this past Saturday and here is a link to some pics from the party on Facebook: https://www.facebook.com/media/set/?set=a.3604906886693.2126038.1394270143&type=3
We feel very close to the Kellers and, though only in a very small way, can relate to some of what they're going through. They're amazing people and we love them to pieces. So I was in tears this morning reading Nick's latest post about what Joey is going through.
http://www.caringbridge.org/visit/joeykeller/
Please, please pray for Joey, Nick, and Elizabeth as they stare this dragon in the face and march forward in faith with sword in hand. Scripture assures us that God's desire is ALWAYS for us to be whole, healthy, and free from sickness and death. I am absolutely confident in this. This is NOT what we were designed for, and God grieves alongside us through all our trials and tribulations. We don't always understand what sometimes prevents God from healing us, but we do know that PRAYER changes things. We also know that ALL things work together for good for the Called.
Please join with us - frequently - as often as you can - in persistently PESTERING God about healing Joey and delivering him from this awful cancer (Luke 11:8; 18:5). Yes, this is actually what He wants us to do! (Read the two passages if you haven't made this amazing discovery.) Pray for Joey to be completely healed. Pray every time you think of it, and think of it often. Pray specifically that every cancer cell and every form of cancer cell in his body would be destroyed, and that all damage would be healed restoring him to complete health. Also pray for the protection, peace, endurance, patience, and faith of all three of them. This is a long and difficult race for them, strewn with pitfalls and robbers along the way. They are amazing people, and Joey is an absolutely amazing, faith-filled, brilliant and insightful little boy. I have been learning from all three of them regularly as we watch them fight this battle. We seek to help them "hold their arms up", in any way we can and hope you can join "TEAM JOEY" alongside us as well.
When Daniel and I showed up at Clinic on Tuesday, we were happily surprised to have Joey and Elizabeth Keller join us in the waiting room. Daniel & Joey got to spend a few brief minutes linking their Nintendo DSes together to play Super Mario Cart (or something like that) while Eliz and I talked about our respective challenges. Unfortunately, theirs currently dwarf anything I can even imagine much less relate to.
We were able to attend Joey's 9th birthday party this past Saturday and here is a link to some pics from the party on Facebook: https://www.facebook.com/media/set/?set=a.3604906886693.2126038.1394270143&type=3
We feel very close to the Kellers and, though only in a very small way, can relate to some of what they're going through. They're amazing people and we love them to pieces. So I was in tears this morning reading Nick's latest post about what Joey is going through.
http://www.caringbridge.org/visit/joeykeller/
Please, please pray for Joey, Nick, and Elizabeth as they stare this dragon in the face and march forward in faith with sword in hand. Scripture assures us that God's desire is ALWAYS for us to be whole, healthy, and free from sickness and death. I am absolutely confident in this. This is NOT what we were designed for, and God grieves alongside us through all our trials and tribulations. We don't always understand what sometimes prevents God from healing us, but we do know that PRAYER changes things. We also know that ALL things work together for good for the Called.
Please join with us - frequently - as often as you can - in persistently PESTERING God about healing Joey and delivering him from this awful cancer (Luke 11:8; 18:5). Yes, this is actually what He wants us to do! (Read the two passages if you haven't made this amazing discovery.) Pray for Joey to be completely healed. Pray every time you think of it, and think of it often. Pray specifically that every cancer cell and every form of cancer cell in his body would be destroyed, and that all damage would be healed restoring him to complete health. Also pray for the protection, peace, endurance, patience, and faith of all three of them. This is a long and difficult race for them, strewn with pitfalls and robbers along the way. They are amazing people, and Joey is an absolutely amazing, faith-filled, brilliant and insightful little boy. I have been learning from all three of them regularly as we watch them fight this battle. We seek to help them "hold their arms up", in any way we can and hope you can join "TEAM JOEY" alongside us as well.
Grace and peace,
- Tim -
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