Hi All;
It's been way too long since I've written anything here and folks have been asking how things are going. Well, things are going - sometimes it seems way too fast. Weeks and months roll by and at some point I sit up and wonder where it all went. Some of it, I'm sure is just a by-product of my new senior citizen status. There are in fact way too many of those by-products in my life right now, but I'll not go any farther down that road.
ANDREA:
Andrea has been reasonably well. Things are largely holding steady. She continues to struggle with lack of energy and "gut problems" of all types. I'll spare both her and you any further details. Her oncologist continues to blame the chemo therapy drug she takes daily. However, we know that many of these problems preceded the cancer treatments and it's been extremely difficult to sort out what's what and what we might be able to "fix" vs. what we just need to learn to live with. So we continue to try various things through our family doctor and on our own to improve what we can. She's doing her best (and succeeding) to keep up with most of the housework and Daniel's school. Her family is going through some real challenges right now and that's been stressful on all of us, but especially her. It's been a difficult situation for many years, but it appears things are rapidly building to crisis level and we're trying hard to figure out the wisest form of involvement for us to have.
Lately, she's been busily trying to plan Daniel's trip through the Children's Wish Foundation (we recently found out it was NOT the Make-A-Wish Foundation, but apparently the exact same kind of thing. Regardless, They provided Daniel with one "little wish" and one "big wish". The little one was a (rather large) Lego set early last year. And for the big one, Daniel has chosen a trip to Disney World - which is, not surprisingly, a popular choice. As he's getting much of his strength back now, we thought it would be a good time to try to get him down there. So Andrea's trying to coordinate all the permissions and paper work and timing, etc. It'll be fun to see how this all comes together. But the stories we've heard form others who have done this are just phenomenal. I think Andrea's more excited than Daniel! :-) If all goes as planned, we'll be going in early May.
DANIEL:
Daniel is also doing well. His hair is coming back in really full now and he's quite happy about that. He's NOT been very happy about the fact that it's come in very curly. Formerly, his hair was bright blond and very straight. Now it's a fairly dark brown and curly. Despite a couple of dozen people assuring him that this is going to be a big hit with the girls one day soon, he remains skeptical. We've also been glad to see him beginning to grow again in both height and weight. He's behind the curves a bit, but moving the right direction and that's a HUGE relief to me. I remain frustrated that we've never gotten any traction from the medical community as to why he was completely stunted in both height and weight gain for two to three years, but at this point, it appear we never will. Unfortunately, much of his weight gain has been the result of gaining disproportionate pounds - probably as a result of ongoing steroid treatments. Though both the dosage and frequency are greatly reduced in the current Maintenance phase, he's once again putting on quite a bit of weight. Some of it is likely from simply being house-bound in the dead of winter. I've been extremely cautious about letting either one of them out with as bad as the cold and flu season has been this year. For awhile, it seemed EVERYONE was sick and I was terrified to let either of them out of the house. But by the grace of God, we've made it through largely unscathed to date ... well until today, but I'll come back to that. Daniel has been slowly increasing his involvement again in both his weekly home school co-op and the church's AWANA program. He's doing very well in (home) school and excels at Math. Last weekend, we attended the Heroes Foundation Gala / fund raiser downtown where Daniel was invited to be a V.I.P. representative of Team Joey - a program that raises support for both cancer research and cancer patients. The Team Joey component was created in honor of Joey Keller's legacy, our friend who lost his battle with brain cancer last November. Daniel took the stage with Colts coach Chuck Pagano (who's fighting leukemia himself), radio personality and former pro football player Joe Staysniak, and Heroes Foundation founder Vince Todd during the evening and thoroughly enjoyed himself. It was his first formal event and we had to get him a suit for the occasion. He loved dressing up and proved himself a natural "schmoozer". I was in awe!! There must have been a dozen different women fawning over him afterward and telling him how special (and cute) he was. As a V.I.P. he'll be delivering toys (mostly Legos) to other cancer patients on behalf of the foundation.
His chemotherapy is still a daily routine with a few different drugs he takes daily (along with various vitamins & supplements), but the clinic visits are down to once-a-month and will remain so until we're finished in the spring of 2015, God willing. It's a 3-month repeating schedule where 2 of the 3 months include a spinal tap & injection at the clinic visit. He hates those with a passion ... and so do his mother & I. But this is the course we've chosen to follow and, right or wrong, it's the one I believe best. I remain open and often searching for any word from the Lord that would release us from continuing down this road, but until it comes, we will stay the course we're on. Yet it doesn't stop the almost daily heart-ache at having to put my son through all we've done and all that lies ahead. We rely regularly on Romans 8:28!
ME:
For myself, things have remained busy. VERY busy. I'm down to the last couple of weeks in teaching my Systematic Theology class with Water-To-Wine. It's been enjoyable, but actually much more work than I anticipated. Things at work have continued at a fairly steady pace and the job itself remains enjoyable overall. I'm extremely happy to be in a job at all, especially one with good health insurance. The fact that it's also largely enjoyable has been a huge blessing. Not having to deal with past stresses and simply dreading going into work every day in the midst of all we've gone through in the last couple years has been of immeasurable value. I thank God regularly for that!
In the past couple weeks, we've finalized plans to start up another weekly Bible study that I'll be teaching at our friends the Rikker's house. We did this for several years awhile back and it was a fantastic blessing. We still count those folks among our closest friends and we're very much looking forward to getting most of the old group together again as well as some new faces. I'll be teaching Genesis (which is actually where we left off when the group ended several years ago) which is always a favorite for me. So despite the fact of having two studies going for a brief overlap coupled with a busy work schedule, trying to keep up with the house and some remodeling projects, and several family problems right now, the next few weeks are looking a bit challenging!
Right on cue, as we finalized plans for the new study over the weekend, I came down with what appears to be laryngitis. It's like clockwork. It was the same month in which I agreed to teach with Water-To-Wine that Daniel was diagnosed with Leukemia last year. I was teaching Genesis as my first course in fact. Before that, it was while teaching this same group at the Rikkers' house that I had an eye infection that had me out of work for the better part of 4 months and ended up with corneal replacement surgery. When I got through that and eventually started teaching Genesis, the group disbanded. It's always something - especially when teaching Genesis. The warfare that comes with any form of ministry is intense. Teaching the Bible is obviously something our enemy hates vehemently ... and Genesis in particular for lots good of reasons! I believe it was Martin Luther who said something to the effect that, "anyone who doesn't believe the devil exists need only try resisting him!" Amen to that!
PRAYER REQUESTS:
1. So we could ALL use your continued prayers. The road ahead remains challenging in lots of ways, but we're also very relieved that it seems the worst is behind us (famous last words, I know).
2. I would like to specifically ask for your prayers for myself in the next few weeks as I try to juggle a lot of plates and keep healthy. Please pray for this throat infection in particular.
3. We could also use your prayers for several family members also going through some real difficulties right now - as well as wisdom on our part in how best to help them.
4. Lastly, I'd like to pass on a special prayer request for another family that a friend recently brought to my attention. They are a Christian family who immigrated to Indiana from Iraq last year because of the intense persecution of Christians there. Their son Lowees (Luis), who is 12, has been diagnosed with an aggressive form of lymphatic cancer (Burkitt's Lymphoma) and is undergoing chemotherapy at Riley. Having been in the states for only a very short time, they don't have a lot of connections yet much less having to adapt to a new culture. Learning to navigate the medical system is challenging enough. While learning a new language, culture, living situation, and all the rest at the same time is just unimaginable. I was also informed that Lowees' father recently lost his job here and is struggling with depression. They certainly need our prayers. I'll pass on more info as it comes.
Thanks everyone for your ongoing love, support, and prayers. You have been God's hands, feet, and voice to us more times than I can possibly count or even acknowledge. And above all, we thank our Lord and Savior Jesus Christ Who's love, faithfulness, peace and comfort through these times has sustained us in every way. To Him be the glory in all things.
Grace and peace,
- Tim, Andrea, & Daniel -
Showing posts with label Work. Show all posts
Showing posts with label Work. Show all posts
Monday, March 4, 2013
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, May 31, 2012
2nd Try for Round 3
Reposting from http://www.caringbridge.org/visit/danieljmiller/journal
2nd Try for Round 3
Wow - I guess it's been awhile since I wrote here. Things have been going pretty well. Daniel is becoming more active, but it's been hard on him. He has so little energy and stamina that his returning desire to run, jump, and play just wreaks havoc on his very out-of-shape little body. While we continue to be stymied over his lack of growth in either height or weight for the past 3 years, we hope, trust, and PRAY that the lack of energy and stamina has more to do with 3 years of sedentary life-style ... because that means it's simple to fix. It may not be EASY mind you - as enough exercise and diet to make a difference in your health are rarely considered "easy" - but the solution is simple. As his desire and enthusiasm (and warm weather) return, it is my hope and plan to find more and more FUN ways to get some exercise - preferably for ALL of us, but especially Daniel. We'll know soon enough whether his strength & endurance will return.
We remain worried - increasingly so - about his lack of height and weight gain, and I'm planning to begin pursuing this again as soon as I can find enough time to breathe again after my work schedule settles down. We're in a crunch right now before a big delivery date and I barely get home in time to tuck Daniel into bed, get a bite to eat, and hit the sack myself these days - but I'm SOOO incredibly blessed to be enjoying my job again. It's been a really long time since I can remember not hating getting up in the morning. Thank you Lord for THAT blessing in the midst of this season of trials right now!
Tomorrow morning however, will be a different story. It's hard to fathom that I am HOPEFUL tonight that we'll be admitted to the hospital tomorrow for more chemotherapy, but after last week's failure due to Daniel's low blood counts, we really want to get this stuff over-with. Last week was the second time we were delayed due to blood counts being too low and nobody seems to be able to explain why this happens. "Could be a virus" (though he has no other symptoms & feels fine), "could be allergies" (though he has none), "could be his body is responding to the chemotherapy" (though it's not supposed to). Or (in my own thoughts) it could be God just setting His own timing for reasons known only to Him. We try to "roll with the changes", but really, we'd all like this to be over as soon as possible.
So tomorrow, we'll head back to Riley, packed up for a few days' stay, and pray for the best. We'd appreciate your prayers as well. If things go as planned, we'll arrive around 10, get a blood test & a spinal tap procedure about 11 (usually more like 12), and then check into the 5th floor and start his 24hr infusion of Methotrexate around 6 or so. He'll be confined to the Hem/Onc ward for the 24hrs while the infusion is going on, but after that, if he's feeling well, we can wander about the hospital. Last time, Daniel and I had a laser-tag war in the main lobby and a few desolate hallways of Riley on Sunday afternoon. Other than a few stares by doctors, nurses, and a cop passing by, we had a lot of fun. :)
They'll check his blood again every 6hrs or so to see how the MTX level is falling as it is eliminated from his body. Once it's below a specific level, we're free to check out. The first time, it was Tuesday afternoon. The second time, it was Monday morning. We never know.
For our Prayer Warrior friends, here are our requests:
1. That everything in the hospital (procedures, etc.) would go well and without mistakes or "events". Events are bad.
2. That the drug would do its job against any cancer cells that might still be lurking about and then be eliminated quickly with a minimum of damage to his body - especially long-term.
3. That we would all have a comfortable and "enjoyable" time ... especially regarding roommates and their parents / visitors.
4. That Daniel would continue quickly on the road to recovering his health, energy, strength, and stamina (and appetite)
5. That his growth would resume to normal as quickly as possible
6. That Andrea and I will find time to rediscover one another and our marriage in the near future,
7. For Andrea's health (this would fill another post or 10 by itself, but she has a long list of prayer needs herself as well!!)
8. That our Awesome, wonderful, gracious, loving God would be glorified and honored through all of this and through our lives.
A huge thanks to all our friends and family who have been following us through this ordeal - especially those who have helped us along the way in so many ways we've lost count - prayers, gifts, help at the house, moral support, or just thinking of us. Thank you all. We love you and may our gracious Lord return your blessings many-fold.
- Tim -
2nd Try for Round 3
Wow - I guess it's been awhile since I wrote here. Things have been going pretty well. Daniel is becoming more active, but it's been hard on him. He has so little energy and stamina that his returning desire to run, jump, and play just wreaks havoc on his very out-of-shape little body. While we continue to be stymied over his lack of growth in either height or weight for the past 3 years, we hope, trust, and PRAY that the lack of energy and stamina has more to do with 3 years of sedentary life-style ... because that means it's simple to fix. It may not be EASY mind you - as enough exercise and diet to make a difference in your health are rarely considered "easy" - but the solution is simple. As his desire and enthusiasm (and warm weather) return, it is my hope and plan to find more and more FUN ways to get some exercise - preferably for ALL of us, but especially Daniel. We'll know soon enough whether his strength & endurance will return.
We remain worried - increasingly so - about his lack of height and weight gain, and I'm planning to begin pursuing this again as soon as I can find enough time to breathe again after my work schedule settles down. We're in a crunch right now before a big delivery date and I barely get home in time to tuck Daniel into bed, get a bite to eat, and hit the sack myself these days - but I'm SOOO incredibly blessed to be enjoying my job again. It's been a really long time since I can remember not hating getting up in the morning. Thank you Lord for THAT blessing in the midst of this season of trials right now!
Tomorrow morning however, will be a different story. It's hard to fathom that I am HOPEFUL tonight that we'll be admitted to the hospital tomorrow for more chemotherapy, but after last week's failure due to Daniel's low blood counts, we really want to get this stuff over-with. Last week was the second time we were delayed due to blood counts being too low and nobody seems to be able to explain why this happens. "Could be a virus" (though he has no other symptoms & feels fine), "could be allergies" (though he has none), "could be his body is responding to the chemotherapy" (though it's not supposed to). Or (in my own thoughts) it could be God just setting His own timing for reasons known only to Him. We try to "roll with the changes", but really, we'd all like this to be over as soon as possible.
So tomorrow, we'll head back to Riley, packed up for a few days' stay, and pray for the best. We'd appreciate your prayers as well. If things go as planned, we'll arrive around 10, get a blood test & a spinal tap procedure about 11 (usually more like 12), and then check into the 5th floor and start his 24hr infusion of Methotrexate around 6 or so. He'll be confined to the Hem/Onc ward for the 24hrs while the infusion is going on, but after that, if he's feeling well, we can wander about the hospital. Last time, Daniel and I had a laser-tag war in the main lobby and a few desolate hallways of Riley on Sunday afternoon. Other than a few stares by doctors, nurses, and a cop passing by, we had a lot of fun. :)
They'll check his blood again every 6hrs or so to see how the MTX level is falling as it is eliminated from his body. Once it's below a specific level, we're free to check out. The first time, it was Tuesday afternoon. The second time, it was Monday morning. We never know.
For our Prayer Warrior friends, here are our requests:
1. That everything in the hospital (procedures, etc.) would go well and without mistakes or "events". Events are bad.
2. That the drug would do its job against any cancer cells that might still be lurking about and then be eliminated quickly with a minimum of damage to his body - especially long-term.
3. That we would all have a comfortable and "enjoyable" time ... especially regarding roommates and their parents / visitors.
4. That Daniel would continue quickly on the road to recovering his health, energy, strength, and stamina (and appetite)
5. That his growth would resume to normal as quickly as possible
6. That Andrea and I will find time to rediscover one another and our marriage in the near future,
7. For Andrea's health (this would fill another post or 10 by itself, but she has a long list of prayer needs herself as well!!)
8. That our Awesome, wonderful, gracious, loving God would be glorified and honored through all of this and through our lives.
A huge thanks to all our friends and family who have been following us through this ordeal - especially those who have helped us along the way in so many ways we've lost count - prayers, gifts, help at the house, moral support, or just thinking of us. Thank you all. We love you and may our gracious Lord return your blessings many-fold.
- Tim -
Friday, May 11, 2012
Weekends at the Hospital
(Mirroring our CaringBridge entry here: http://www.caringbridge.org/visit/danieljmiller/journal )
Weekends at the Hospital:
As I write this, Andrea and Daniel are off to the hospital again this morning for our next planned admission - the second of four for this phase of chemotherapy. Though we're very grateful that the staff has agreed to shift these admissions to the weekend so that it's not so hard on us to stay the nights with Daniel, it doesn't make for a very enjoyable weekend for anyone. Daniel was really dreading this again last night, but the good news is that there is no spinal tap this visit. Finding that out made him a little happier.
I was rather surprised last night as I got out my copy of the chemotherapy protocol to which he's been assigned to see what was on the agenda for this weekend. He actually got angry with me stating that he didn't want to see it, didn't want to be around it, and didn't think ANYBODY should have to "see their own chart". I was dumbfounded. It's such an opposite reaction to things like this than I had at his age when I underwent kidney surgery and had to go into the doctor twice a week for allergy shots in each arm growing up with fairly severe allergic asthma. I wanted to learn about everything. I had a collection of the hypodermic syringes (with needles broken off of course) - hundreds of them. I even did a science fair project on how the kidney works.
But Daniel wants nothing to do with ANY of it and doesn't even want to have the subject discussed in his presence. When we're not actually forced to be dealing with the subject, he wants it all as far from him as possible. Clearly there's a LOT of psychological undertones here and most of this is a defense mechanism. Some of it at least is unhealthy and I still look for opportunities to help him process through all that's happening. I want to be sure he at least doesn't have false ideas or expectations about how things are going or his prognosis. Worries and fears will kill us and we're not meant to carry such burdens even as adults. Watching a 10 year old go through this - particularly one's own and only child - is soul wrenching. On the positive side, he's been doing much better recently. We've been looking for and finding more "fun" things to do and, with his counts improved, we've been able to have more visitors and get out more. Last weekend, I took him to play LASER Tag - probably his new favorite activity - and that was a huge attitude boost for him. He's been feeling & acting much more "back to normal" though he still doesn't get out of the house much. This isn't so much because we won't let him as just the combination of schedules, weather, and limits to his own energy levels (not to mention Andrea's & mine).
I'm back at work today as I've been so much of the time this week, and last, and the one before that... My team is up against some difficult deadlines and a LOT of people are stressed and putting in lots of hours. I'm starting the day today with several hours of overtime already on my time card. So in some ways, I'm actually looking forward to the hospital stays this weekend as I spend the evenings at least with Daniel. It'll be the most I've seen of him all week. I'm thankful that at least I'm enjoying the job. That's an enormous blessing that I'm very thankful for in the midst of all this.
PRAYER REQUESTS:
1. Please continue to pray for Daniel - he needs God's touch, reassurance, and comfort in his whole being - physical, mental, and spiritual.
2. More & better family time for all of us, but especially Daniel, to bring more "FUN" into the equation to balance out the rest.
3. Better spiritual (and psychological & physical) leadership on my part so that I can help him process, recover, and build himself up in body, soul, & spirit
4. Along the same lines - that Daniel (and all of us) would be STRENGTHENED through these trials ... that they would accomplish God's purposes in our lives, working together for good both in us & through us to others.
5. Success and minimal (or NO) side-effects from the drugs or complications from all this
6. For Andrea and I as we struggle, seemingly more and more recently, with the stress, communication, and our own marriage through the midst of all this.
7. That God would be glorified in the midst of our family and by what others see / perceive in all this. If God can use this as a witness or to help others in any way that brings glory to Himself, then all of it is worthwhile.
PS: Please also continue to pray for our friends the Kellers and their boy Joey. Visit / join his CaringBridge site here; http://www.caringbridge.org/visit/joeykeller
Weekends at the Hospital:
As I write this, Andrea and Daniel are off to the hospital again this morning for our next planned admission - the second of four for this phase of chemotherapy. Though we're very grateful that the staff has agreed to shift these admissions to the weekend so that it's not so hard on us to stay the nights with Daniel, it doesn't make for a very enjoyable weekend for anyone. Daniel was really dreading this again last night, but the good news is that there is no spinal tap this visit. Finding that out made him a little happier.
I was rather surprised last night as I got out my copy of the chemotherapy protocol to which he's been assigned to see what was on the agenda for this weekend. He actually got angry with me stating that he didn't want to see it, didn't want to be around it, and didn't think ANYBODY should have to "see their own chart". I was dumbfounded. It's such an opposite reaction to things like this than I had at his age when I underwent kidney surgery and had to go into the doctor twice a week for allergy shots in each arm growing up with fairly severe allergic asthma. I wanted to learn about everything. I had a collection of the hypodermic syringes (with needles broken off of course) - hundreds of them. I even did a science fair project on how the kidney works.
But Daniel wants nothing to do with ANY of it and doesn't even want to have the subject discussed in his presence. When we're not actually forced to be dealing with the subject, he wants it all as far from him as possible. Clearly there's a LOT of psychological undertones here and most of this is a defense mechanism. Some of it at least is unhealthy and I still look for opportunities to help him process through all that's happening. I want to be sure he at least doesn't have false ideas or expectations about how things are going or his prognosis. Worries and fears will kill us and we're not meant to carry such burdens even as adults. Watching a 10 year old go through this - particularly one's own and only child - is soul wrenching. On the positive side, he's been doing much better recently. We've been looking for and finding more "fun" things to do and, with his counts improved, we've been able to have more visitors and get out more. Last weekend, I took him to play LASER Tag - probably his new favorite activity - and that was a huge attitude boost for him. He's been feeling & acting much more "back to normal" though he still doesn't get out of the house much. This isn't so much because we won't let him as just the combination of schedules, weather, and limits to his own energy levels (not to mention Andrea's & mine).
I'm back at work today as I've been so much of the time this week, and last, and the one before that... My team is up against some difficult deadlines and a LOT of people are stressed and putting in lots of hours. I'm starting the day today with several hours of overtime already on my time card. So in some ways, I'm actually looking forward to the hospital stays this weekend as I spend the evenings at least with Daniel. It'll be the most I've seen of him all week. I'm thankful that at least I'm enjoying the job. That's an enormous blessing that I'm very thankful for in the midst of all this.
PRAYER REQUESTS:
1. Please continue to pray for Daniel - he needs God's touch, reassurance, and comfort in his whole being - physical, mental, and spiritual.
2. More & better family time for all of us, but especially Daniel, to bring more "FUN" into the equation to balance out the rest.
3. Better spiritual (and psychological & physical) leadership on my part so that I can help him process, recover, and build himself up in body, soul, & spirit
4. Along the same lines - that Daniel (and all of us) would be STRENGTHENED through these trials ... that they would accomplish God's purposes in our lives, working together for good both in us & through us to others.
5. Success and minimal (or NO) side-effects from the drugs or complications from all this
6. For Andrea and I as we struggle, seemingly more and more recently, with the stress, communication, and our own marriage through the midst of all this.
7. That God would be glorified in the midst of our family and by what others see / perceive in all this. If God can use this as a witness or to help others in any way that brings glory to Himself, then all of it is worthwhile.
PS: Please also continue to pray for our friends the Kellers and their boy Joey. Visit / join his CaringBridge site here; http://www.caringbridge.org/visit/joeykeller
Wednesday, March 21, 2012
Catching Up: Much To Tell!
Mirroring our CaringBridge post: http://www.caringbridge.org/visit/danieljmiller/journal
(Note: If you're not a regular RSS reader, please join us there. You can subscribe via email or SMS to our CaringBridge site to receive notifications for new posts.)
Catching Up: Much To Tell
This past Sunday was Daniel's Benefit Concert that our good friend Eric Phillippe of "The Worship Encounter" (or is it just "The Encounter"?) put together for us. Eric has been involved in the Christian music scene for many years now, and was able to pull together a free concert, featuring 3 Christian artists / bands at our church's "coffee house" in Daniel's honor. A box for donations was set out, and they raised over $1600 as a gift to our family for Daniel. You could have knocked us over with a feather. To all who gave something to our family in Daniel's honor, please accept our deepest, humblest, and most sincere thanks for your kindness and generosity.
I feel badly that I did not clarify before hand how any such gifts would be used, but please allow me to do so now. The primary purpose of the concert and the collection was always stated as being to help us with our medical bills. And believe me, they're coming in now. It took about a month and a half before we saw anything, but when the first pile arrived in the mail, it was ... sobering. I'd been watching our insurance website and had seen that, in the first month or so, over $100,000 had been submitted to our insurance by all the various doctors, hospitals, clinics, labs, etc. but only $60,000 of it had been paid by insurance. So far, only a relatively small portion of that has filtered through to us and we're waiting to see how it all pans out, but this is what Eric had in mind when he put the benefit together.
After much prayer and consideration, Andrea and I have decided to divide it up this way. 10% goes back to the Lord (of course). Another 10% will go directly toward something fun/ enjoyable for Daniel, and the rest will go directly toward his medical bills. If any of you who made donations to us prefer that your gift be used differently, or exclusively toward something specific (after a tithe of course. :) Please don't hesitate to contact me directly and let me know your preference.
(Note: If you're not a regular RSS reader, please join us there. You can subscribe via email or SMS to our CaringBridge site to receive notifications for new posts.)
Catching Up: Much To Tell
The time is flying by lately and it's difficult to
comprehend that we're already a couple days into Spring when Daniel was
"just" diagnosed a week after New Year. My posts have been
getting farther apart as it's been a real challenge for me just to keep up with
everything lately. I may have bitten off more than I could chew ... or at
least right at the limit ... with my Genesis study, but it has also been a
wonderful experience for me and, in many ways, a kind of stress relief (or at
least distraction) of its own. Only 3 weeks left and I'm looking forward
to the end with somewhat mixed emotions. But I really need the breathing room.
This past Sunday was Daniel's Benefit Concert that our good friend Eric Phillippe of "The Worship Encounter" (or is it just "The Encounter"?) put together for us. Eric has been involved in the Christian music scene for many years now, and was able to pull together a free concert, featuring 3 Christian artists / bands at our church's "coffee house" in Daniel's honor. A box for donations was set out, and they raised over $1600 as a gift to our family for Daniel. You could have knocked us over with a feather. To all who gave something to our family in Daniel's honor, please accept our deepest, humblest, and most sincere thanks for your kindness and generosity.
I feel badly that I did not clarify before hand how any such gifts would be used, but please allow me to do so now. The primary purpose of the concert and the collection was always stated as being to help us with our medical bills. And believe me, they're coming in now. It took about a month and a half before we saw anything, but when the first pile arrived in the mail, it was ... sobering. I'd been watching our insurance website and had seen that, in the first month or so, over $100,000 had been submitted to our insurance by all the various doctors, hospitals, clinics, labs, etc. but only $60,000 of it had been paid by insurance. So far, only a relatively small portion of that has filtered through to us and we're waiting to see how it all pans out, but this is what Eric had in mind when he put the benefit together.
After much prayer and consideration, Andrea and I have decided to divide it up this way. 10% goes back to the Lord (of course). Another 10% will go directly toward something fun/ enjoyable for Daniel, and the rest will go directly toward his medical bills. If any of you who made donations to us prefer that your gift be used differently, or exclusively toward something specific (after a tithe of course. :) Please don't hesitate to contact me directly and let me know your preference.
The concert was wonderful.
It’s been a long time since my ears rang that long afterward, but it
took me back to my high school and college days … well … enough about
that! First up was Rick Richardson and
his worship team (including his wife Allison) who came down from Michigan
just to play for us. Rick, as well as
Eric, had both been in my old youth group way back in the day when I was Youth
Pastor for Lawrence United
Methodist Church. It’s been a great pleasure to watch them both
grow in their relationships to God and to use their musical talents for His
glory. It was humbling to have them come
and do this for us. Eric and his band
were next up, and lastly, “Under the Olive Trees” performed for us. The lead singer of the band, Thayne Maguire,
had also been a former student of mine when I taught at the various
incarnations of the Bible college at Horizon.
In fact, he was in my Genesis class, and it was he that invited me to
teach the course I’m doing right now, though in a different context. So there was a lot of memories and
“reunioning” going on Sunday night, and it was such a blessing to see these
guys serving like this. Eric is also putting
together at least one more such concert down in Franklin Indiana as well.
Unfortunately, due to the large crowd, Daniel wasn’t able to
attend. So he and I recorded a video
message that was played at the concert between the first two bands. The video is “public”, but I believe a
Facebook account is required (??)
You can also view some pictures that I took of the event here
(even if you don’t have a Facebook account.)
Daniel has been doing very well recently – physically
anyway. Since his last treatment for
osteoporosis, he’s been “a new kid” with much more energy - more than recently
anyway. He still tires quickly (after
about a year of essentially no exercise, he’s pretty badly out of shape for a
10 year old). But he’s back to building
lots of Legos, dressing in his costumes, and today, he even built a
pillow-fort; something I taught him to do many years ago, but I haven’t seen
him do for nearly a year. So that’s been
very encouraging. There has been a dark
side though in that he’s been struggling more with depression on occasion. It’s grown to the point that I actually
approached the Riley psychology department for help. Those of you who know me might be looking for
headlines about Hell freezing over about now, but rest assured, I’m just being
a good “engineer” (or maybe “battle strategist”) about this, and attacking the
problem from several different angles and looking for what’s most
effective. While I continue to work with
him directly from a more spiritual side, I was looking for more help with the
“practical” side of things – some hands-on type exercises to help him deal with
the stress of hospital visits and the negative thinking in which he gets caught
up. And they seem to be doing pretty
well at that. So I’m planning to give it
some time and see how it works out. If I’m not happy with it, I’ll pull the
plug and move on. I’ve gotten pretty good at that where doctors are concerned,
so you can imagine that any secular psychologist is only a heartbeat away from
being “let go”! Ha ha. Despite all this though, Daniel has been
improving and moving in the right directions I think. We struggle a bit with
getting him to eat enough, but that predates the leukemia. The more frequent bouts with nausea certainly
haven’t helped, but it’s been manageable.
Mom and Dad haven’t been quite so good of late. This past weekend, Andrea came down with some
kind of intestinal issue that has left her in a lot of pain. I won’t go into any more details, but she
could use your prayers. I believe it was
a mild case of food poisoning, but one of the doctors’ nurses thought it may be
a virus that’s been going around.
Doesn’t really matter at a practical level, it’s miserable to go
through. Today she’s been a bit better,
but she (wisely) decided that she shouldn’t take Daniel to his clinic
(chemotherapy) appointment this morning, which of course left me to do it. Now I actually really prefer to go to these
appointments with him anyway. It’s fun to see the doctors avoid me when I’m in
the clinic because they know they’ll be stuck for a half an hour answering
questions. Ha ha. But it’s been a real
struggle to keep up at work recently.
Although I’ve been able to get my full 40hrs in almost every week since
this started, it’s only been by working really long hours on the days I’m
there, and frankly, the exhaustion factor has been taking its toll on my memory
and efficiency. I feel like I’m getting
further behind and I’m NOT liking it. I
had taken the day off on Monday because Andrea was in such bad shape (and I was
feeling really out of it myself after the busy weekend), so I really didn’t
want to take another full day off in the same week. It was a relatively short day at the clinic
though and we were out of there before noon. We stopped at the food court in the downtown
mall (one of Daniel’s favorite places), and were home in another couple
hours. I’d fully intended to head back
to work, but was so tired I thought I’d take a 15 minute “power nap” before
heading in. I woke up 2 hrs later
feeling even more out of it than before.
I poked around on Facebook for awhile hoping I would snap out of it, but
just couldn’t focus. So I gave up and
just relaxed the rest of the afternoon & evening alternating sleeping and
vegetating in front of the computer. I
still feel like I could sleep for two days straight, but hoping the “day of
rest” today will pay off at least for the rest of the week.
Though we all thoroughly enjoyed the visitors and the
benefit concert this weekend – and I wouldn’t trade any of it for the world – I
feel like I haven’t actually had a weekend to myself in over 2 months. Last weekend, Daniel was checked into the
hospital and I spent Thurs, Fri, & Sat nights sleeping on a fold-out chair
in his room and planning my Bible study lessons on my laptop while he played
video games during the day, and so on it goes.
I’m not complaining, mind you! In fact, I’m REALLY grateful that most of
his unplanned hospital stays have occurred over the weekend so that there
hasn’t been as much impact to my work schedule.
I see that as a God-thing for sure.
But it is starting to catch up with me.
So I think we’re all recognizing that God is building character in us
through all this. For we are told:
And not only that, but
we also glory in tribulations, knowing that tribulation produces perseverance;4 and perseverance, character;
and character, hope.5 Now
hope does not disappoint, because the love of God has been poured out in our
hearts by the Holy Spirit who was given to us. - Rom 5:3-4
So we look forward with eagerness and rejoicing to the eventual
revealing of what God is doing in and through all these things to advance His
kingdom and bring glory to Himself. We
rest daily in His promises, and I will close here with the one that has been the
greatest sea anchor for me in the midst of these storms. (The sailors out there
will know what a “sea anchor” is and why it fits better than a regular anchor
in this context. :)
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
Grace and peace and many,
many thanks to all
- Tim -
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