We went back to the hospital the following Monday and Alex's platelet count had risen to 57. That's still very low but a clear indication that things were moving in the right direction so no transfusion was required.
Back Alex went Wednesday with Cynthia as I was in Boston, and Alex had another blast of Vincristine. His platelets had climbed impressively to 159, that's verging on downright normal! We have since had several very good days and Alex has been feeling pretty good - he was even swimming in the pool a couple of times - that's a first since July. Nice.
On Tuesday of this week we went to a local lab to get blood work in preparation for Alex's Wednesday appointment when he was due to have a lumbar puncture of Methotrexate and another shot of Vincristine. Unfortunately it turned out his white blood cell count was too low to have the procedure done - his neutrophils (the type of white blood cell specific to fighting infections) were at 0.3 and the minimum requirement is 0.75 ("normal" is 1.5 to 7.0).
So we are pushed back by a week until next Wednesday. This is pretty typical we are told and the fact that his Haemoglobin was 90 and those strapping platelets were a very lusty 375 means the marrow is working, but the chemotherapy targets the white blood cells mostly. While everything gets pushed back and we would like to just get on with it, we are equally happy to have the time off.
Sorry for being so tardy with the updates.
Thursday, October 28, 2010
Friday, October 15, 2010
Thirty-one
Back to the hospital we went this morning. Alex had blood taken and then we sat on our thumbs waiting for the results. His platelets came back at 31 which is pretty borderline on whether to transfuse or not. After some consultations it was decide not to transfuse platelets today but that we should watch Alex closely over the weekend for any obvious signs like a nosebleed and not so obvious unless your looking, like petechiae - little purple spots on the skin. And no knife juggling.
So the good news was it was a relatively short day, the so-so news is that we have to back on Monday to check the platelets, which it is hoped will have turned up by then. And all these trips are getting tiresome! Then back Wednesday for the regularly scheduled chemo.
Alex has rebounded from the treatments of forty-eight hours ago. He was in bed all day yesterday but ate and drank a little late in the day. Today he is visibly much better (his haemoglobin was 102, one feels much better at that level than 70 something) and he is feeding again.
The sun is shining, the weekend is almost upon us and we hope the line on the graph has turned up. Always appreciate your emails, thank you.
Thursday, October 14, 2010
A Hard Day's Night
Alex was sick as a dog all night until about six this morning. He was very restless and uncomfortable and didn't sleep very much at all. Around eight or so he finally fell into a deep sleep. I'm hoping he sleeps as long as he can while the chemo wears off.
I'm also hoping that things start getting a bit easier soon. Bloodwork tomorrow, likely platelets. In theory there is nothing after that until next Wednesday but depending on what his other blood counts are like tomorrow, I suspect we'll be back in Monday to check again.
Wednesday should be reasonably simple, just a shot of Vincristine and that will bring an end to this phase. After that we go into an "interim maintencance" phase and, all depending on blood levels, we might only be going into the hospital every ten days. After the past eight weeks or so, going in every ten days seems like an extraordinary luxury!
Wednesday, October 13, 2010
Another Bloody Wednesday
We are at a stage in Alex's treatments where the duration and intensity of the chemotherapy has taken a toll. We give you chemotherapy, you recover. We give you more and you recover. We give you a lot more and it takes a little longer but you recover. And then some more. And after a while the recovery takes longer. Par for the course.
That's where I think we are now and for the next (?) couple of weeks Alex's blood counts will be watched closely.
Alex had a blood transfusion last Wednesday when his haemoglobin had dropped to 75. It was checked again on Friday - mostly to see whether he would need blood again over the weekend - but it was a not so bad 95 so we just had the Ara-C on Saturday but were told to come back on Tuesday (yesterday) to check again.
Thanksgiving Monday was such a fabulous day but Tuesday was ... back to reality. Alex didn't feel great, probably fatigue from the day before and the fact that his haemoglobin proved to be back down to 85. (normal = 125-165)
This is also a key time for platelets. A normal platelet count is somewhere between 180 and 440 parts per something (it's times 10 to the power of nine per litre if you really want to know). A week ago Wednesday Alex was at a strapping 212. His platelets have been quite strong. On Friday they were down to 170 and yesterday were 76.
As we were going to be back in today, no action was required yesterday. But today ... yes please.
Alex's heart rate was 140 when first checked at the hospital early this morning, a classic symptom of low haemoglobin. (There's not as much, so the body just pumps it around faster to get the job done, an amazing machine, the body) Another symptom is you look as white as Caspar the Ghost and all the docs you walk past down the hall coming out of rounds say "Hey, guess you're getting blood today, eh?" Probably a clue if you are as finely attuned to these nuances as I am.
Dr. L predicted 69, I thought 79 but said 81, with some home team bravado.
It was 72. Well. Hey, she did go to medical school, gimme a break here! And platelets were down to 57. From 212 to 57 in a week. Hmm. Par for the course though, this is expected. (Starting to get the meaning of the title now ain'cha?).
So, a big day again today. Alex received a shot of Vincristine and the dreaded "peg." You may recall this is a simultaneous injection of Asparaginese with a big needle in the thigh muscle of each leg. It is not well received by kids. I don't know if they do it to adults, but I'm sure we wouldn't like it much either from what I can see. Alex didn't even make a sound. You play hockey, you have a second degree black belt, what's a tent peg in each leg? Proud of that boy... I know he felt it though.
After Asparaginese, you have to wait for three hours to make sure you don't have a reaction to it before you can get blood. Alex killed part of that time by inhaling Pentamadine through a ventilator kind of thing for twenty minutes, a drug he needs once every four weeks to prevent a type of pneumonia. It tastes awful and it's an altogether unpleasant experience.
Once the three hours was up, he could get the blood transfusion, which took another three hours to drip in. Long day and he was exhausted long before we got home. The chemo has a had a temporary victory over the anti-nausea drugs and he has been very sick this afternoon and into tonight as I write this and I expect a pretty quiet next 24 to 36 hours.
We have tomorrow off and are back at the hospital on Friday to check the blood cell counts. The red stuff should be okay but he will likely need a transfusion of platelets.
(Quite a while back in response to so many people asking the same question "what can I do to help?" I wrote that giving blood was a great thing to do. It is, but giving platelets, which takes longer, is an even better thing to do.)
We have been at the hospital for 10 of the last 13 days now and 14 of the last 18. If I have counted correctly. I do know I keep wondering why I'm buying gas all the time! If you haven't seen me around much, that's why. Someone should please tell the Lions Pub that I'm okay.
In capital market parlance, my take is that we are forming a bottom here. Maybe not and I don't want to jinx anything, but we have to be close. It's no fun at all at the bottom (and it's a long, long way back up) but, this is hard to articulate and you never know until after the fact, but somewhere near here, you strangely start to feel more optimistic. Sometimes you're wrong. Sometimes you're right and I'm not sure, it might be a mirage, but I could have sworn a saw some light down at the end there somewhere. Is that the Phoenix capsule coming?
That's where I think we are now and for the next (?) couple of weeks Alex's blood counts will be watched closely.
Alex had a blood transfusion last Wednesday when his haemoglobin had dropped to 75. It was checked again on Friday - mostly to see whether he would need blood again over the weekend - but it was a not so bad 95 so we just had the Ara-C on Saturday but were told to come back on Tuesday (yesterday) to check again.
Thanksgiving Monday was such a fabulous day but Tuesday was ... back to reality. Alex didn't feel great, probably fatigue from the day before and the fact that his haemoglobin proved to be back down to 85. (normal = 125-165)
This is also a key time for platelets. A normal platelet count is somewhere between 180 and 440 parts per something (it's times 10 to the power of nine per litre if you really want to know). A week ago Wednesday Alex was at a strapping 212. His platelets have been quite strong. On Friday they were down to 170 and yesterday were 76.
As we were going to be back in today, no action was required yesterday. But today ... yes please.
Alex's heart rate was 140 when first checked at the hospital early this morning, a classic symptom of low haemoglobin. (There's not as much, so the body just pumps it around faster to get the job done, an amazing machine, the body) Another symptom is you look as white as Caspar the Ghost and all the docs you walk past down the hall coming out of rounds say "Hey, guess you're getting blood today, eh?" Probably a clue if you are as finely attuned to these nuances as I am.
Dr. L predicted 69, I thought 79 but said 81, with some home team bravado.
It was 72. Well. Hey, she did go to medical school, gimme a break here! And platelets were down to 57. From 212 to 57 in a week. Hmm. Par for the course though, this is expected. (Starting to get the meaning of the title now ain'cha?).
So, a big day again today. Alex received a shot of Vincristine and the dreaded "peg." You may recall this is a simultaneous injection of Asparaginese with a big needle in the thigh muscle of each leg. It is not well received by kids. I don't know if they do it to adults, but I'm sure we wouldn't like it much either from what I can see. Alex didn't even make a sound. You play hockey, you have a second degree black belt, what's a tent peg in each leg? Proud of that boy... I know he felt it though.
After Asparaginese, you have to wait for three hours to make sure you don't have a reaction to it before you can get blood. Alex killed part of that time by inhaling Pentamadine through a ventilator kind of thing for twenty minutes, a drug he needs once every four weeks to prevent a type of pneumonia. It tastes awful and it's an altogether unpleasant experience.
Once the three hours was up, he could get the blood transfusion, which took another three hours to drip in. Long day and he was exhausted long before we got home. The chemo has a had a temporary victory over the anti-nausea drugs and he has been very sick this afternoon and into tonight as I write this and I expect a pretty quiet next 24 to 36 hours.
We have tomorrow off and are back at the hospital on Friday to check the blood cell counts. The red stuff should be okay but he will likely need a transfusion of platelets.
(Quite a while back in response to so many people asking the same question "what can I do to help?" I wrote that giving blood was a great thing to do. It is, but giving platelets, which takes longer, is an even better thing to do.)
We have been at the hospital for 10 of the last 13 days now and 14 of the last 18. If I have counted correctly. I do know I keep wondering why I'm buying gas all the time! If you haven't seen me around much, that's why. Someone should please tell the Lions Pub that I'm okay.
In capital market parlance, my take is that we are forming a bottom here. Maybe not and I don't want to jinx anything, but we have to be close. It's no fun at all at the bottom (and it's a long, long way back up) but, this is hard to articulate and you never know until after the fact, but somewhere near here, you strangely start to feel more optimistic. Sometimes you're wrong. Sometimes you're right and I'm not sure, it might be a mirage, but I could have sworn a saw some light down at the end there somewhere. Is that the Phoenix capsule coming?
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.
Subscribe to:
Posts (Atom)