Wednesday, October 13, 2010
Thanksgiving
The last update was late Friday night. On Saturday we got to sleep in a little as we only had to be at the hospital at 10. On Saturdays, we go into the ward known as "3B" as the outpatient clinic is closed on weekends. It was pretty quick and we were home before noon if I remember correctly. Considering he had just had four consecutive days of Ara-C, Alex was pretty good. There is a huge relief factor that it's all over with, offset by the reality of the physical toll that it takes over the next several days. It was also, I believe, Ara-C treatment number 16 out of 16. Well done, Alex. All told, we had a pretty good Saturday, Alex stayed up when we got home and ate fairly decently.
Very early Sunday morning Alex was throwing up. Reality strikes back.
By late morning though, he was up and in a great mood and we had another very good day. Cynthia and all the kids sans Alex went to our friend Janice's house for dinner. I left Alex on his own and drove Samantha over and spent an hour or so there as well - there's nothing particularly interesting about that other than Alex was so good, it seemed perfectly normal for him to be alone for an hour or two - that would have seemed so unlikely just days earlier.
Around midnight I remembered that I still had to brine the turkey. Much Fred Flintstone like cursing and muttering.
Monday, Thanksgiving, was even better. Probably the best, all round, Alex has seemed since this whole thing started. He ate really well, played videogames with our outstanding friend Nicky and seemed, well, like Alex. He even quietly suggested that this year, pointing to a recipe in the Joy of Cooking bible that was lying open on the counter, I might try making the sausage and apple stuffing, instead of the "usual kind you make." I wasn't offended. Much.
I made the turkey and gravy and Cynthia and Deb did everything else. Great deal. They arrived about 5 and we had a small sized group for dinner. We would have liked to have had a bigger crowd but didn't want to push our luck. It was great fun. All the kids were running around and playing boisterously, very nice to see. Boys being rambunctious. At one point I saw Alex coming from downstairs with this giant, six foot, inflatable baseball bat he got somewhere, presumably with the intention of using it. 'Hey! Put that down!"
"Isn't it great he's well enough to get into trouble?" said Cynthia. Yeah, actually. "Put that down!"
Three Good to Outstanding days in a row. Wow. Some light at the end of the tunnel far in the distance? Maybe, not sure.
Thank you Debbie and huge thanks to Cynthia for everything.
Thanksgiving 2010, that's a wrap.
Saturday, October 9, 2010
It's Raining in Vancouver
Hard. It's raining hard.
Yesterday (Thursday) was a great day. The new teenager was up on his own and we had an uneventful trip in and back. Alex ate quite well, we were in a good mood all day and laughed a lot last night, just the two of us, (Samantha, the great, great trouper, was off at a school outdoor camp for two nights.)
A pretty typical Groundhog day today, Friday. The third day in a row we have been to the hospital and the seventh out of the last ten. Alex is tired. He really didn't want to get up and go this morning and as the chemo adds up, it's amazing how different things are in twelve hours. You're up one day ond an your ass the next. Bit of a struggle today but he fought through it.
It took a little longer this morning as we had to wait for blood work to come back to see how the transfusion from Wednesday was holding up and whether he would need more blood over the weekend. His haemoglobin was 95, not bad, so we're clear on the transfusion front at least through the weekend. At this point one's platelets typically start to drop, often severely. Alex has had very good platelet counts - as good as yours or mine even, and while the number was still in the normal range it had come down a fair bit from Wednesday and he will likely need platelets next week the doc said.
We got home mid morning and Alex went straight to bed and slept for a couple of hours. Woke up but with no energy for anything except to lie there, curled up. Done. (No barfing though!) Often in the past when it's been like this, Alex has been down for a good 24 or even 48 hours.
But. But, by four o'clock or so, this strong Duke scratched his way back and surprised me a bit by getting back up and even eating a little and drinking a lot. Well done, Alex!
We have one more day of Ara-C tomorrow (Alex has had 15 of 16 treatments of this drug. Plus others of course) and then a couple of days off. We would have been off until Wednesday (that's our day!) but we will go in Tuesday for blood work to check those platelets and haemoglobin. Alex will get a different type of chemo on Wednesday, blood counts permitting, and then I think he gets a good stretch off. Like maybe a whole week. Yee haw. Yawn.
We're nearing the end of this "consolidation" phase and then we move to "interim maintenance." Here's hoping that's a little easier ... but we ain't banking on it.
Yesterday (Thursday) was a great day. The new teenager was up on his own and we had an uneventful trip in and back. Alex ate quite well, we were in a good mood all day and laughed a lot last night, just the two of us, (Samantha, the great, great trouper, was off at a school outdoor camp for two nights.)
A pretty typical Groundhog day today, Friday. The third day in a row we have been to the hospital and the seventh out of the last ten. Alex is tired. He really didn't want to get up and go this morning and as the chemo adds up, it's amazing how different things are in twelve hours. You're up one day ond an your ass the next. Bit of a struggle today but he fought through it.
It took a little longer this morning as we had to wait for blood work to come back to see how the transfusion from Wednesday was holding up and whether he would need more blood over the weekend. His haemoglobin was 95, not bad, so we're clear on the transfusion front at least through the weekend. At this point one's platelets typically start to drop, often severely. Alex has had very good platelet counts - as good as yours or mine even, and while the number was still in the normal range it had come down a fair bit from Wednesday and he will likely need platelets next week the doc said.
We got home mid morning and Alex went straight to bed and slept for a couple of hours. Woke up but with no energy for anything except to lie there, curled up. Done. (No barfing though!) Often in the past when it's been like this, Alex has been down for a good 24 or even 48 hours.
But. But, by four o'clock or so, this strong Duke scratched his way back and surprised me a bit by getting back up and even eating a little and drinking a lot. Well done, Alex!
We have one more day of Ara-C tomorrow (Alex has had 15 of 16 treatments of this drug. Plus others of course) and then a couple of days off. We would have been off until Wednesday (that's our day!) but we will go in Tuesday for blood work to check those platelets and haemoglobin. Alex will get a different type of chemo on Wednesday, blood counts permitting, and then I think he gets a good stretch off. Like maybe a whole week. Yee haw. Yawn.
We're nearing the end of this "consolidation" phase and then we move to "interim maintenance." Here's hoping that's a little easier ... but we ain't banking on it.
Thursday, October 7, 2010
Groundhog Day
I can't believe that "Groundhog Day" starring Bill Murray and Andie MacDowell (where has she gone?) dates back to 1993. Reason 674 that I feel old.
If you haven't seen the movie, do. It's quite good Or it was seventeen years ago. It's a story about this bitter, cynical weatherman who is sent to cover Groundhog Day in Punxsutawney. He gets stuck in a time loop and relives the same day over and over again. I know, but watch it anyway, it's good.
Anyway, that's our metaphor today. The same day over and over.
It's Wednesday (well it was when I started writing this, now it's Thursday) and so of course we were at BC Children's Hospital. Another long Wednesday, we left home at 7 and got home about 2:30 - although we've had longer days as you'll hear.
All Alex needed was a quick shot of a chemotherapy drug called Ara-C. He had this last Wednesday and for each of the next three consecutive days, a three day break, then back today and we are in tomorrow, Friday and Saturday. This is the fourth time that we have had four consecutive days of going into the hospital for Ara-C. And other concoctions.
The chemo takes its toll though and, as in the past, at different points one needs blood transfusions to keep one's haemoglobin level high enough. (You remember haemoglobin from past posts and biology classes - it is the metallprotein in red blood cells that carries oxygen. Kinda key.) In an average adult male, normal haemoglobin is somewhere between 125 to 165 (g/L). When Alex's blood work came back this morning it was 75 so some blood was in order. That takes time, maybe an hour to do the cross match and obtain the blood and then three or four hours to infuse the half litre or so that he got. His blood will be tested again Friday and he may or may not need another transfusion in the next few days.
It's Thursday now and another Ground Hog Day has come and gone.
Last night I woke Alex up at 11:30 for some pills - anti-nausea drugs and a mild chemotherapy agent called 6 Mercaptopurine, called "6mp" at the hospital.
I wake him again at 6:20 for anti-nausea drugs. It's a bit early but we have found having the pills in early before we get in the car works better. He drifts back to sleep. Sort of.
At 7:00 I kick him out of bed - like any teenager, he doesn't like it (although today he was up and dressed on his own ). Alex wears his uniform of track pants, a t-shirt and the orange Nike running shoes he bought in London. I wear my uniform of jeans that cost too much, an untucked dress shirt, dress shoes.
We're in the car at 7:15 or 7:20. We drive to BC Children's Hospital and get there about 8:00, our scheduled time. We park in the same spot and I buy a ticket from the same machine and put it on the dash. Sometimes Alex throws up during the drive or when we arrive. The last several times though he doesn't, the docs have tweaked the dosage of the anti-nausea pills and we have tweaked the timing. It works.
We check in at the registration desk. The lady has a toasted english muffin with peanut butter and jam. Every day (she's tiny). I tease her about this a little. Alex puts on the plastic hospital id bracelet, I write his name and the time on a whiteboard. We sit and wait. Sometimes for a long time, today everything went very quickly. I go to the on campus Starbucks and get coffee that I've been jonesing for since six. I get Alex a hot chocolate. Sometimes he drinks it. We wait some more.
Alex's nurse comes and records his weight, height, blood pressure, heart rate and temperature. We answer the same questions we did the previous day. It's not a drag, the nurses are great, we like them - a lot. But it is Groundhog Day.
Eventually Alex gets the "push" of the Ara-C. It only takes a few seconds to deliver but a few minutes to prep before hand and then flush and close off the IV line that remains attached to his chest for the four days.
We head back out to the car and drive home. Sometimes this is a short time later, sometimes it's a few hours later, but it seems the same somehow. Time ... bends.
If he's feeling rough, Alex heads back to bed and I get online, check my voicemail. If he's feeling okay, Alex is on the couch - watching TV is about all he has the energy for (although he did a big chunk of math and science homework yesterday, very impressive). He tries to eat and drink, we try to think of something to give him something different and manageable to make it more interesting. He has more pills in the afternoon, might have a little dinner, might not. I split my time between trying to do work online, sitting in on a conference call and sitting with Alex. We talk about different things usually nothing, sometimes non-stop and sometimes we're quiet for long periods. I make dumb jokes Sometimes they work, sometimes they don't.
Alex is usually in bed pretty early.
At 11:30 p.m., I wake him up for the pills. Groundhog Day begins again.
It's hard to describe, but if you watch the movie you'll see how Bill Murray goes from Groundhog Day being so distressing to then accepting it to then embracing it.
We don't embrace it really. Or at least not yet and I doubt we ever will. We don't like it but we no longer dislike it, we just accept it.
It is what it is.
It's Groundhog Day.
If you haven't seen the movie, do. It's quite good Or it was seventeen years ago. It's a story about this bitter, cynical weatherman who is sent to cover Groundhog Day in Punxsutawney. He gets stuck in a time loop and relives the same day over and over again. I know, but watch it anyway, it's good.
Anyway, that's our metaphor today. The same day over and over.
It's Wednesday (well it was when I started writing this, now it's Thursday) and so of course we were at BC Children's Hospital. Another long Wednesday, we left home at 7 and got home about 2:30 - although we've had longer days as you'll hear.
All Alex needed was a quick shot of a chemotherapy drug called Ara-C. He had this last Wednesday and for each of the next three consecutive days, a three day break, then back today and we are in tomorrow, Friday and Saturday. This is the fourth time that we have had four consecutive days of going into the hospital for Ara-C. And other concoctions.
The chemo takes its toll though and, as in the past, at different points one needs blood transfusions to keep one's haemoglobin level high enough. (You remember haemoglobin from past posts and biology classes - it is the metallprotein in red blood cells that carries oxygen. Kinda key.) In an average adult male, normal haemoglobin is somewhere between 125 to 165 (g/L). When Alex's blood work came back this morning it was 75 so some blood was in order. That takes time, maybe an hour to do the cross match and obtain the blood and then three or four hours to infuse the half litre or so that he got. His blood will be tested again Friday and he may or may not need another transfusion in the next few days.
It's Thursday now and another Ground Hog Day has come and gone.
Last night I woke Alex up at 11:30 for some pills - anti-nausea drugs and a mild chemotherapy agent called 6 Mercaptopurine, called "6mp" at the hospital.
I wake him again at 6:20 for anti-nausea drugs. It's a bit early but we have found having the pills in early before we get in the car works better. He drifts back to sleep. Sort of.
At 7:00 I kick him out of bed - like any teenager, he doesn't like it (although today he was up and dressed on his own ). Alex wears his uniform of track pants, a t-shirt and the orange Nike running shoes he bought in London. I wear my uniform of jeans that cost too much, an untucked dress shirt, dress shoes.
We're in the car at 7:15 or 7:20. We drive to BC Children's Hospital and get there about 8:00, our scheduled time. We park in the same spot and I buy a ticket from the same machine and put it on the dash. Sometimes Alex throws up during the drive or when we arrive. The last several times though he doesn't, the docs have tweaked the dosage of the anti-nausea pills and we have tweaked the timing. It works.
We check in at the registration desk. The lady has a toasted english muffin with peanut butter and jam. Every day (she's tiny). I tease her about this a little. Alex puts on the plastic hospital id bracelet, I write his name and the time on a whiteboard. We sit and wait. Sometimes for a long time, today everything went very quickly. I go to the on campus Starbucks and get coffee that I've been jonesing for since six. I get Alex a hot chocolate. Sometimes he drinks it. We wait some more.
Alex's nurse comes and records his weight, height, blood pressure, heart rate and temperature. We answer the same questions we did the previous day. It's not a drag, the nurses are great, we like them - a lot. But it is Groundhog Day.
Eventually Alex gets the "push" of the Ara-C. It only takes a few seconds to deliver but a few minutes to prep before hand and then flush and close off the IV line that remains attached to his chest for the four days.
We head back out to the car and drive home. Sometimes this is a short time later, sometimes it's a few hours later, but it seems the same somehow. Time ... bends.
If he's feeling rough, Alex heads back to bed and I get online, check my voicemail. If he's feeling okay, Alex is on the couch - watching TV is about all he has the energy for (although he did a big chunk of math and science homework yesterday, very impressive). He tries to eat and drink, we try to think of something to give him something different and manageable to make it more interesting. He has more pills in the afternoon, might have a little dinner, might not. I split my time between trying to do work online, sitting in on a conference call and sitting with Alex. We talk about different things usually nothing, sometimes non-stop and sometimes we're quiet for long periods. I make dumb jokes Sometimes they work, sometimes they don't.
Alex is usually in bed pretty early.
At 11:30 p.m., I wake him up for the pills. Groundhog Day begins again.
It's hard to describe, but if you watch the movie you'll see how Bill Murray goes from Groundhog Day being so distressing to then accepting it to then embracing it.
We don't embrace it really. Or at least not yet and I doubt we ever will. We don't like it but we no longer dislike it, we just accept it.
It is what it is.
It's Groundhog Day.
Wednesday, October 6, 2010
LIVE S T R O N G Day
 |
| Samantha and Abby Live Strong! |
Uncle Geoff was in town and living strong. Managed to keep his hair too!
 |
| Some Richardsons, some Balfours and one Heseltine |
Friday, October 1, 2010
A Very Brief Recap
I know, I've been terrible. I will fill in the details later but here's a quick and dirty synopsis of last week. As you will recall the previous Tuesday Alex's blood work showed that his blood counts were too low to have the treatments scheduled to begin a week ago Wednesday so they were deferred to start this Wednesday. This apparently is not unusual.
(For the medically inclined, an ANC of at least 0.75 is desired, Alex's was 0.45)
Anyway, we were looking forward to a week off but it dint go as smoothly as hoped. It's a tough journey.
So here's the quick snapshot of the last ten days and I will update more often and backfill some of this.
Wednesday: Very Good
Thursday: Very Good
Friday: Fair, but fading
Saturday: VERY UGLY
Sunday: Ugly
Monday Bouncing back eventually to fair
Tuesday Good to Very Good
Wednesday Very Good (despite an 11 hour hospital day)
Thursday: Pretty Ugly
Today: Fair to Good so far
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