Interm Maintenance II is finished! Joel was supposed to have five increasing doses of methotrexate every 10 days but his counts dropped and never really recovered so he ended up just having it increased once and the rest of the doses stayed the same. He was quite sick thru most of the treatment, he stopped eating for awhile and lost a bit of weight. He also lost his sense of taste and smell but that has just started coming back. He was delayed twice during the last set of treatment. His last two weeks at home were great though and he said that he was feeling better than he has felt in the past year.
Blood counts yesterday were all good, actually they were on the low side of NORMAL!
Hemoglobin - 116
Platelets - 318
White cells - 3.1
ANC - 1.69
Joel started Delayed Intensification II today at 10:00 am. He began the day with spinal methotrexate, then he got vincristine and doxorubicin thru his port, and he started on the steroid dexamethasone. Joel doesn't like the feeling of the medication or of being put to sleep so he choses to have the spinals done while awake and alert. In a couple of days he will get another dose of PEG-Asparaginase and then he can come home again. He will hopefully be home for about 25 days and he will be having his chemo done in Vernon during that time. Delayed Intensification II is pretty much just like the first Delayed Intensification except that during the second half he will also have radiation and he won't get the other steroid (thioguanine).
The dexamethasone makes Joel feel very irritable so we all have to be careful not to annoy him over the next few weeks. He is on it for one week and then he gets a week off before starting it again. The book says that doing it this way (discontinuous dexamethasone) is not considered "experimental" since it has been used in many past studies; it is being given in this way for subject safety reasons. I am not reassured when I read things like that, it tends to have the opposite effect on me. Coming off it is very painful as the dex seems to attack the bones, joints and any previous injury sites but I am prepared with a freezer full of ice packs, bags of frozen peas and calcium supplements.
And Joel will lose his hair again, just when it was growing in so nicely, but this should be the last time.
Just 57 more days until Maintenance.
Tuesday, October 25, 2011
Thursday, October 20, 2011
Why my husband calls me hun.
Okay, first I will show you a few pictures. And then I will tell you what is going on with Joel's treatment. And last of all I will share a story about Grant's pet name for me. Just a warning…. you will need kleenex.
So about Joel, he was supposed to start treatment again on Wednesday but when he went for blood-work on Tuesday, the results showed that his counts had drastically dropped. We were kind of shocked cause they had been so high the week before and he has been feeling really good. They will do more blood-work on Monday and maybe he will be able to start treatment again on Tuesday. So we are now paused at 57 more days until he is in Maintenance. We are still hopeful that he will be finished before Christmas. I am thankful for an extra week to fatten him up. He has a new favourite food…. chips and dip. The chemo depletes his body of everything good, especially calcium so he gets some wicked charlie horses. Last week he had them in both legs at the same time, the one only lasted about a minute but in the left leg it lasted about half an hour. I give him calcium supplements daily but after last week I doubled the dose. I am currently reading the book "Childhood Cancer Survivors" because I want to be aware of what Joel needs to look out for when this is all done. It says that often the kid's bones are like swiss cheese after treatment and they need to take extra care not to break them.
Joel is out at a birthday party with friends tonight. He is feeling normal and is a happy boy.
And now for my sappy story (don't forget the kleenex, grab a whole box just to be on the safe side).
I have memories of my dad calling my mom "honey". I had an uncle and aunt who called each other "sugar" and "darling". We lived right beside them while I was very young and we heard those terms of endearment used regularly. My brother and his wife call each other "babe" and it is just so very adorable. My sister and her husband always called each other "sweetheart". I think they still do after many many years of marriage…… I will have to ask her about that later.
So, last week while we were all sitting down to a nice dinner, Grant said "hun, could you pass the salad dressing". The youngest in the house (just 5 years old) asked the question that none of us has ever thought to ask before. She said, "Papa, why do you call mama hun"? He did not say something cliché like "it is because she is so sweet" or something silly like "it is because she is so sticky and attracts all the bees". But instead, without missing a beat he answered her…. word for word….. I am so not kidding you…… He said, " It is because she is related to Attila"
Needless to say, there have been no more pet words or terms of endearment used this past week. I wonder if he will dare call me "hun" ever again.
My baby girl is trying to turn me into an Oma in about a month.
Ari had a fortune cookie tonight. He really hoped it would say that "a tall beautiful blond woman would change his life". He was disappointed when it said that "you have all the assistance and luck this month to succeed". I don't understand my boy.
So about Joel, he was supposed to start treatment again on Wednesday but when he went for blood-work on Tuesday, the results showed that his counts had drastically dropped. We were kind of shocked cause they had been so high the week before and he has been feeling really good. They will do more blood-work on Monday and maybe he will be able to start treatment again on Tuesday. So we are now paused at 57 more days until he is in Maintenance. We are still hopeful that he will be finished before Christmas. I am thankful for an extra week to fatten him up. He has a new favourite food…. chips and dip. The chemo depletes his body of everything good, especially calcium so he gets some wicked charlie horses. Last week he had them in both legs at the same time, the one only lasted about a minute but in the left leg it lasted about half an hour. I give him calcium supplements daily but after last week I doubled the dose. I am currently reading the book "Childhood Cancer Survivors" because I want to be aware of what Joel needs to look out for when this is all done. It says that often the kid's bones are like swiss cheese after treatment and they need to take extra care not to break them.
Joel is out at a birthday party with friends tonight. He is feeling normal and is a happy boy.
And now for my sappy story (don't forget the kleenex, grab a whole box just to be on the safe side).
I have memories of my dad calling my mom "honey". I had an uncle and aunt who called each other "sugar" and "darling". We lived right beside them while I was very young and we heard those terms of endearment used regularly. My brother and his wife call each other "babe" and it is just so very adorable. My sister and her husband always called each other "sweetheart". I think they still do after many many years of marriage…… I will have to ask her about that later.
So, last week while we were all sitting down to a nice dinner, Grant said "hun, could you pass the salad dressing". The youngest in the house (just 5 years old) asked the question that none of us has ever thought to ask before. She said, "Papa, why do you call mama hun"? He did not say something cliché like "it is because she is so sweet" or something silly like "it is because she is so sticky and attracts all the bees". But instead, without missing a beat he answered her…. word for word….. I am so not kidding you…… He said, " It is because she is related to Attila"
Needless to say, there have been no more pet words or terms of endearment used this past week. I wonder if he will dare call me "hun" ever again.
Saturday, October 15, 2011
Laughter, the best medicine
I sit down at my computer everyday and I have good intentions about leaving an update but most of the time I just end up walking away. Maybe sitting down here and writing forces me out of my happy little world of denial. I also find that it is much easier for me to write when I am alone. And today I find myself at home with only two kids (instead of the usual 5 or 6) and it is as alone as I will ever be. The dishes are all done, laundry is caught up and I don't feel like doing all the clean the house chores right now, so I will write.
I looked at my camera today and found it empty, no pictures. That is not like me but I will take pictures soon and post them next week. Today I will just write a bit about what has been going on the last few weeks.
Joel and I went to Kelowna on October 3rd for the methotrexate and vincristine. Joel did not want to go because he was finally feeling normal again so he was a bit grumpy. It was my first time taking him to Kelowna for treatment, he and Grant had been several times before. It was a good thing that Joel knew where he was going cause I would have gotten so very lost. The treatment room he was put into was very pick and it had a strange circus painted all over the walls and ceiling. We had to wait for a long time for blood work results and then for the chemo to be sent up. The methotrexate is supposed to take between 15 minute to half an hour to drip into the system. Then the line should be flushed for a few minutes in order to clear and then the vincristine is given. After the nurse started the chemo she realized that she didn't have a clamp on the IV so the methotrexate ran into his port in less than 5 minutes. Joel turned green and then grey and I ran to get him some ice to chew on. I think the nurse was a little shocked at how quickly Joel reacted. She flushed his port with a small syringe and then immediately started the vincristine. It is very handy having chemo done in Kelowna and getting to go home the same day. But I have so much more security and peace of mind when it is done in Vancouver where that is all they do all day and there seems to be less little mistakes made.
Joel got home and went straight to the couch and that is were he lived for the next week. He has started not eating at all after chemo. That is a pattern I have seen in so many of the kids going thru this. They would rather not eat anything and not throw up. I feel lucky if I can get a small bowl of soup into him in a day. The dietitian is always after him to at least drink boost, which he can't stand. She wants me to add cream to all his food, give him whole milk to drink, feed him high fat yogurt and ice cream. Just the mention of these foods tends to turn him green.
I am not the kind of person who has the television on all day. I love peace and quiet and would rather have the kids reading, building things or playing outside than sit in front of a screen. But having something light to watch really takes Joel to another place and lets him forget how he is feeling. Seeing Joel on the couch, curled up in a ball, with his head on the cushion always breaks my heart. So I find myself looking for distractions for him that are still age appropriate for everyone else in the house. I think the boys can all quote every episode of "Corner Gas" and "Mythbusters" is always good for a laugh cause boys just seem to love seeing thing get blown up. Lately they have been watching the old "Dukes of Hazzard". Car chases, pretty girls, police sirens and cars flying thru the air…. they really don't think it gets any better. Personally though, I think that if you've seen one episode, you've seen them all.
I also find that books distract Joel. He just finished reading "Watership Down" and I also gave him my old copy of "The Sacred Diary of Adrian Plass" which made him howl.
Anyway between the books and tv, he made it thru the week without losing too much weight. I made lots of pie in order to tempt him. Once he agrees to eat pie for breakfast, then I know he is on the mend. Grant and I are both trying lose some weight, actually we are having a contest to see who can lose the weight first. We are NOT competitive in the least. He gets very mad at me for doing so much baking cause he thinks I am trying to sabotage him but I am just trying to fatten Joel up. So then Grant goes out and buys me ice cream bars and chocolate bars which I eat just because they are there. Sometimes I think it is a win/win situation but really it is a vicious cycle…. but I have a plan. I will eat all the ice cream bars but leave the boxes in the freezer so that Grant thinks I still have a big stash and then maybe he will stop buying them. And then I will make lots of fattening food for Joel…..
I totally lucked out with the whole son-in-law thing. Shane made most of our Thanksgiving dinner including the bird. He cooked it in beer, which I have never heard of and it was moist and tender. Ari and Adam were most excited to be eating beer. Really? It was all too tempting for Joel who tried eating and the results weren't pretty. But it was nice to see him be tempted and to try.
I felt my grand-baby have the hiccups and I felt it kick!
After Thanksgiving Joel started feeling a bit better everyday. He is going to be the best man at Brayden and Brooks wedding next summer! Thanks Brayden for giving Joel something to look forward to.
I started on all our passport paperwork and we had our photos done. Joel asked to go to Israel for his Make a Wish.
Joel registered for college this week and will be taking calculus thru distance ed.
Thursdays blood work results were all good.
White cells - 3.1
ANC - 1.6
Hemoglobin - 116
Platelets - 318
Joel will have blood work done again on Tuesday and head back to Vancouver as long as the counts are still good. I will write about the next set of treatment then.
Ari got onto my library website and ordered every Garfield, Asterix and Lucky Luke book ever written. I think there were 34 in transit this week. That was hardly embarrassing, going in to the library and picking them all up. And that is not even half of what is coming. Note to self….. get a new library password!
I have not been running, my ankle is still bothering me. I miss running with all my heart. Instead I have been splitting wood. It is a good workout that makes every muscle in my body ache, even the muscles in my toes that I didn't know I possessed. I have also been riding the bike. I usually go out in the evening, just around dusk when all the kids are settled and my work for the day is done. But that is when the insects all seem to hover a few feet above the pavement in order to absorb the last fading heat of the day. And I seem to swallow and ingest a huge amount. Note to self…. find a different time of day to ride your bike!
My questions for the week?
1. Your ideas for funny books to stock up on for Joel
2. Funny movies or tv shows for Joel
3. Are bugs considered a protein or carbohydrate? Just so I know my proper calorie intake after a bike ride.
And I will go clean the house now.
I looked at my camera today and found it empty, no pictures. That is not like me but I will take pictures soon and post them next week. Today I will just write a bit about what has been going on the last few weeks.
Joel and I went to Kelowna on October 3rd for the methotrexate and vincristine. Joel did not want to go because he was finally feeling normal again so he was a bit grumpy. It was my first time taking him to Kelowna for treatment, he and Grant had been several times before. It was a good thing that Joel knew where he was going cause I would have gotten so very lost. The treatment room he was put into was very pick and it had a strange circus painted all over the walls and ceiling. We had to wait for a long time for blood work results and then for the chemo to be sent up. The methotrexate is supposed to take between 15 minute to half an hour to drip into the system. Then the line should be flushed for a few minutes in order to clear and then the vincristine is given. After the nurse started the chemo she realized that she didn't have a clamp on the IV so the methotrexate ran into his port in less than 5 minutes. Joel turned green and then grey and I ran to get him some ice to chew on. I think the nurse was a little shocked at how quickly Joel reacted. She flushed his port with a small syringe and then immediately started the vincristine. It is very handy having chemo done in Kelowna and getting to go home the same day. But I have so much more security and peace of mind when it is done in Vancouver where that is all they do all day and there seems to be less little mistakes made.
Joel got home and went straight to the couch and that is were he lived for the next week. He has started not eating at all after chemo. That is a pattern I have seen in so many of the kids going thru this. They would rather not eat anything and not throw up. I feel lucky if I can get a small bowl of soup into him in a day. The dietitian is always after him to at least drink boost, which he can't stand. She wants me to add cream to all his food, give him whole milk to drink, feed him high fat yogurt and ice cream. Just the mention of these foods tends to turn him green.
I am not the kind of person who has the television on all day. I love peace and quiet and would rather have the kids reading, building things or playing outside than sit in front of a screen. But having something light to watch really takes Joel to another place and lets him forget how he is feeling. Seeing Joel on the couch, curled up in a ball, with his head on the cushion always breaks my heart. So I find myself looking for distractions for him that are still age appropriate for everyone else in the house. I think the boys can all quote every episode of "Corner Gas" and "Mythbusters" is always good for a laugh cause boys just seem to love seeing thing get blown up. Lately they have been watching the old "Dukes of Hazzard". Car chases, pretty girls, police sirens and cars flying thru the air…. they really don't think it gets any better. Personally though, I think that if you've seen one episode, you've seen them all.
I also find that books distract Joel. He just finished reading "Watership Down" and I also gave him my old copy of "The Sacred Diary of Adrian Plass" which made him howl.
Anyway between the books and tv, he made it thru the week without losing too much weight. I made lots of pie in order to tempt him. Once he agrees to eat pie for breakfast, then I know he is on the mend. Grant and I are both trying lose some weight, actually we are having a contest to see who can lose the weight first. We are NOT competitive in the least. He gets very mad at me for doing so much baking cause he thinks I am trying to sabotage him but I am just trying to fatten Joel up. So then Grant goes out and buys me ice cream bars and chocolate bars which I eat just because they are there. Sometimes I think it is a win/win situation but really it is a vicious cycle…. but I have a plan. I will eat all the ice cream bars but leave the boxes in the freezer so that Grant thinks I still have a big stash and then maybe he will stop buying them. And then I will make lots of fattening food for Joel…..
I totally lucked out with the whole son-in-law thing. Shane made most of our Thanksgiving dinner including the bird. He cooked it in beer, which I have never heard of and it was moist and tender. Ari and Adam were most excited to be eating beer. Really? It was all too tempting for Joel who tried eating and the results weren't pretty. But it was nice to see him be tempted and to try.
I felt my grand-baby have the hiccups and I felt it kick!
After Thanksgiving Joel started feeling a bit better everyday. He is going to be the best man at Brayden and Brooks wedding next summer! Thanks Brayden for giving Joel something to look forward to.
I started on all our passport paperwork and we had our photos done. Joel asked to go to Israel for his Make a Wish.
Joel registered for college this week and will be taking calculus thru distance ed.
Thursdays blood work results were all good.
White cells - 3.1
ANC - 1.6
Hemoglobin - 116
Platelets - 318
Joel will have blood work done again on Tuesday and head back to Vancouver as long as the counts are still good. I will write about the next set of treatment then.
Ari got onto my library website and ordered every Garfield, Asterix and Lucky Luke book ever written. I think there were 34 in transit this week. That was hardly embarrassing, going in to the library and picking them all up. And that is not even half of what is coming. Note to self….. get a new library password!
I have not been running, my ankle is still bothering me. I miss running with all my heart. Instead I have been splitting wood. It is a good workout that makes every muscle in my body ache, even the muscles in my toes that I didn't know I possessed. I have also been riding the bike. I usually go out in the evening, just around dusk when all the kids are settled and my work for the day is done. But that is when the insects all seem to hover a few feet above the pavement in order to absorb the last fading heat of the day. And I seem to swallow and ingest a huge amount. Note to self…. find a different time of day to ride your bike!
My questions for the week?
1. Your ideas for funny books to stock up on for Joel
2. Funny movies or tv shows for Joel
3. Are bugs considered a protein or carbohydrate? Just so I know my proper calorie intake after a bike ride.
And I will go clean the house now.
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