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 -
