The Boy had a bit of a fever yesterday evening, which was cause for concern, but when I learned that his temperature was taken while he was playing around and tearing up the place, and eating nonstop, it bothered me less. It went down a bit later on and was back within normal range by the morning.
I stopped by on my way to rehearsal, just to check in with him. He's too cute. When I returned after rehearsal, I joined him for a somewhat fitful and uncomfortable nap. He was neither fitful nor uncomfortable--that was pregnant me trying to share a bed with the baby, while sleeping on the wrong side, and having a cold. So I did sleep and I think I'm better off for it, but nonetheless.
"Are you a TV? Are you a grape?" It was funny when Musical Daddy came in just now and The Boy was too busy.
His temperature was 97.0 axillary as he slept, so he is, at least for now, off the hook in terms of having any sort of fever. His first chemo began at 1:30, so it will finish at 7:30. He will have his second chemo, the one with the blood pressure monitoring, when he might actually still be awake.
Right now, he is raiding the fridge. He knows how to open it up, and he stands in front of it like a teenager.
Saturday, April 11, 2009
Friday, April 10, 2009
Passover Oddity
Why in the world would anyone eat an apple-nut-wine sweet mixture with horseradish? It sounds pretty disgusting. Not normal at all. Yet at Passover it is supposed to be done. Furthermore, it is quite tasty.
Sounds like a pregnancy craving. And I never even thought about how strange it is until now.
Also, The Boy was playing with his little paint set. These are the TaDoodles by Crayola, which I don't like because they don't encourage proper grip and are annoying and messy. Of course, he got paint on various parts of his body. Musical Daddy pointed out that the paint is much less toxic than the chemo.
Touché.
Sounds like a pregnancy craving. And I never even thought about how strange it is until now.
Also, The Boy was playing with his little paint set. These are the TaDoodles by Crayola, which I don't like because they don't encourage proper grip and are annoying and messy. Of course, he got paint on various parts of his body. Musical Daddy pointed out that the paint is much less toxic than the chemo.
Touché.
On Holiday, and Chemo #6
I meant to post a new entry at some point during the week, as it's been a pretty busy week, but I just didn't. I was in Harrisburg for the past two days, with The Boy and with my family, and I figured I could stay mostly disconnected for those few days without the entire world collapsing.
So. Tuesday (which seems like a long time ago) was a perfectly fine day. I got my car detailed on the inside, which was prompted by the fact that I left my sunroof open, but also motivated by Passover and the quest to eliminate leavened bread from my life for the next week. Considering how clean the car is vs. how dirty it was...worth every penny. I did some shopping, and we had a friend visit. He lives in Michigan but was on the east coast for his sister's wedding; he figured he may as well stop and see a few friends and a few sights while he was in the area. The Boy seemed to like him well enough. They played with Play-Doh together.
Musical Daddy had rehearsal on Tuesday night, but our friend went to the diner with me and The Boy. He commented that in terms of handling the whole parenting thing, including a little guy who likes to climb on stuff and touch everything, I really don't seem to be all that stressed out. My response was that when your kid has cancer, a lot of the little stuff doesn't really seem to matter, and then your child senses that you are more relaxed and spends less time getting on your nerves. More on that topic later in the post.
The Boy and I were delayed in leaving for Harrisburg on Wednesday morning. The usual thing where one event delay leads to another. I was in a rush and figured I'd let him eat in the car. But then I figured out that I was missing some iPod-related cords and really couldn't function without them, and since I'd be passing our highway exit anyway...may as well stop home. About a block from home, he threw up. So it was a good thing we were almost home anyway. And an even better thing that I had this carseat cover because cleanup was just a matter of taking a few wipes to the area. It wasn't a lot but it seemed as though he had eaten in a hurry, and that was a factor combined with his having a cold and cough.
The trip to Harrisburg is under 3 hours, and I often make it without stopping, but I figured that The Boy could probably use a break in the middle. I stopped at a Burger King which did not have a changing table in the bathroom, so we did the standing diaper change. Fortunately, he was very cooperative.
We arrived at the hotel in the late afternoon, shortly after my family had arrived and checked in, so we didn't have to wait. We were met at the door by my mother, who was, of course, thrilled to see The Boy. She loves her grandson SO much.
Hotels are generally not that much fun for toddlers. There is some level of excitement at exploring a new place, but it gets old pretty quickly. It didn't take long for The Boy to discover that he was able to open the door and exit the room. Fun for us. He also didn't take long to learn how to open the fridge. With it being Passover, we had to bring our food with us for the times when we weren't at my aunt's house. I shopped for much of the food, because the prices here are a lot better than those in Pittsburgh.
The seder was held at my aunt's house. Both sedarim, actually. They live in a large Tudor with lots of fun places to explore, sets of stairs to ascend and descend, and an impressive playroom and toy collection (even though the youngest child is 22 years old). My aunt is also rather enamored with The Boy; she was prepared with several items with which to amuse him. She has a briefcase full of little superhero figurines (a good toy selection for the child who is past putting everything in his mouth and loves to take things out of bags and boxes). Musical Daddy may be given the task of sorting them, as he likely will recognize many of the characters.
Anyhow, there was no expectation that The Boy would stay at the table the whole time, nor wait for his meal. The seder doesn't begin until 8, and the meal isn't served until 10, which is pretty unreasonable if you're 1.5 years old. Fortunately, he was able to find the kitchen. Grandma was excellent at following him, wherever he chose to go (not that she really sits still so well anyhow), and I was sure to bring him back to the table for certain highlights, like The Four Questions and the frog song. He certainly ate his fill both nights--turkey the first night, brisket the second night, with apples and grapes and juice to go with it. He also enjoyed the songs and seemed at least to react favorably to The Four Questions, which I had been playing for him and singing for him frequently, in preparation.
It does feel a little bit isolating, to be the only one with a very small child at such an event, but it was nice that my mother and sister and other relatives were willing to amuse him and chase him around. Snaps to my uncle for taking The Boy out for a walk yesterday, where he actually napped for quite awhile after fighting off sleep for hours, giving me a chance to relax. I can remember when we were kids, we would sometimes stray from the table to play. My mother had the first two children in the family (actually, two and three, but the first was my cousin who lives in Israel and wasn't in attendance at these events), so I'm sure that she had her hands full with us, especially since once I was old enough for conflict, my brother and I would fight constantly.
All told, it was a wonderful visit, and I'm so glad that we went. Fortunately, the holiday landed on a time that was good for The Boy in terms of his counts and how he would be feeling.
Straight from Harrisburg to the hospital this morning, to begin chemo #6. Of 30. We'll be 20% finished after this...every one of these stays brings us closer to the end of the treatment and hopefully our trip to Disneyworld. Although we arrived before 9:30, it took awhile to check in with admitting. At least the room was ready on time, but the chemo didn't start until 3:00. I'm not excited about that, because he is getting Carboplatin today which runs 6 hours. Followed by Etoposide, which requires that his blood pressure be taken every 15 minutes. So that will happen probably at 10:00, because The Boy will be due for a dose of Zofran in between the two chemo meds. Very annoying. But hopefully they can shift it back a bit for tomorrow, and even if not, it isn't so important, provided that they are willing to shift the third dose of Etoposide back on Sunday.
The 3-day chemo stays are generally easier and also do not require the same additional medication as the 5-day stays. As I found out, my mother had only two chemo medications during her treatment, but because she had one that was related to Cyclophosphamide, called Ifosphamide, she also needed the extra little doses of Mesna, which is the bladder and kidney protectant that The Boy gets. She had that one and Doxorubicin/Adriamycin. That's the one that turns your pee red.
I am a bit concerned because The Boy still has his cold. I am also not thrilled that I have it and Musical Daddy feels like he might be getting it too. Likely, since Grandma is staying with him, she'll get it as well. Of course, Grandma never whines. She doesn't complain and she doesn't get upset. She'll stay up late with The Boy or amuse him in the middle of the night. She hops in the car for visits...and of course, she is here every three weeks. Not to say that she never complains about anything, but she is remarkable and self-sacrificing because she loves The Boy and she loves us too.
Hopefully, I can get through this weekend. We both are singing for Easter and my voice is in questionable condition due to this cold. Of course, I can't take much for it. AirBorne, which normally saves my behind when I feel like I am getting sick, is off-limits for pregnant women.
One of The Boy's oncologists is pregnant with her second child, about 6 or 7 weeks behind me. Additionally, one of the nurses at the treatment center is expecting her second about a week after I am, but since hers will be a scheduled C-section, she'll possibly be in at the same time that I am. There must be something about the center--be careful when you drink the water there.
Anyhow, Boy needs Mom. Later.
So. Tuesday (which seems like a long time ago) was a perfectly fine day. I got my car detailed on the inside, which was prompted by the fact that I left my sunroof open, but also motivated by Passover and the quest to eliminate leavened bread from my life for the next week. Considering how clean the car is vs. how dirty it was...worth every penny. I did some shopping, and we had a friend visit. He lives in Michigan but was on the east coast for his sister's wedding; he figured he may as well stop and see a few friends and a few sights while he was in the area. The Boy seemed to like him well enough. They played with Play-Doh together.
Musical Daddy had rehearsal on Tuesday night, but our friend went to the diner with me and The Boy. He commented that in terms of handling the whole parenting thing, including a little guy who likes to climb on stuff and touch everything, I really don't seem to be all that stressed out. My response was that when your kid has cancer, a lot of the little stuff doesn't really seem to matter, and then your child senses that you are more relaxed and spends less time getting on your nerves. More on that topic later in the post.
The Boy and I were delayed in leaving for Harrisburg on Wednesday morning. The usual thing where one event delay leads to another. I was in a rush and figured I'd let him eat in the car. But then I figured out that I was missing some iPod-related cords and really couldn't function without them, and since I'd be passing our highway exit anyway...may as well stop home. About a block from home, he threw up. So it was a good thing we were almost home anyway. And an even better thing that I had this carseat cover because cleanup was just a matter of taking a few wipes to the area. It wasn't a lot but it seemed as though he had eaten in a hurry, and that was a factor combined with his having a cold and cough.
The trip to Harrisburg is under 3 hours, and I often make it without stopping, but I figured that The Boy could probably use a break in the middle. I stopped at a Burger King which did not have a changing table in the bathroom, so we did the standing diaper change. Fortunately, he was very cooperative.
We arrived at the hotel in the late afternoon, shortly after my family had arrived and checked in, so we didn't have to wait. We were met at the door by my mother, who was, of course, thrilled to see The Boy. She loves her grandson SO much.
Hotels are generally not that much fun for toddlers. There is some level of excitement at exploring a new place, but it gets old pretty quickly. It didn't take long for The Boy to discover that he was able to open the door and exit the room. Fun for us. He also didn't take long to learn how to open the fridge. With it being Passover, we had to bring our food with us for the times when we weren't at my aunt's house. I shopped for much of the food, because the prices here are a lot better than those in Pittsburgh.
The seder was held at my aunt's house. Both sedarim, actually. They live in a large Tudor with lots of fun places to explore, sets of stairs to ascend and descend, and an impressive playroom and toy collection (even though the youngest child is 22 years old). My aunt is also rather enamored with The Boy; she was prepared with several items with which to amuse him. She has a briefcase full of little superhero figurines (a good toy selection for the child who is past putting everything in his mouth and loves to take things out of bags and boxes). Musical Daddy may be given the task of sorting them, as he likely will recognize many of the characters.
Anyhow, there was no expectation that The Boy would stay at the table the whole time, nor wait for his meal. The seder doesn't begin until 8, and the meal isn't served until 10, which is pretty unreasonable if you're 1.5 years old. Fortunately, he was able to find the kitchen. Grandma was excellent at following him, wherever he chose to go (not that she really sits still so well anyhow), and I was sure to bring him back to the table for certain highlights, like The Four Questions and the frog song. He certainly ate his fill both nights--turkey the first night, brisket the second night, with apples and grapes and juice to go with it. He also enjoyed the songs and seemed at least to react favorably to The Four Questions, which I had been playing for him and singing for him frequently, in preparation.
It does feel a little bit isolating, to be the only one with a very small child at such an event, but it was nice that my mother and sister and other relatives were willing to amuse him and chase him around. Snaps to my uncle for taking The Boy out for a walk yesterday, where he actually napped for quite awhile after fighting off sleep for hours, giving me a chance to relax. I can remember when we were kids, we would sometimes stray from the table to play. My mother had the first two children in the family (actually, two and three, but the first was my cousin who lives in Israel and wasn't in attendance at these events), so I'm sure that she had her hands full with us, especially since once I was old enough for conflict, my brother and I would fight constantly.
All told, it was a wonderful visit, and I'm so glad that we went. Fortunately, the holiday landed on a time that was good for The Boy in terms of his counts and how he would be feeling.
Straight from Harrisburg to the hospital this morning, to begin chemo #6. Of 30. We'll be 20% finished after this...every one of these stays brings us closer to the end of the treatment and hopefully our trip to Disneyworld. Although we arrived before 9:30, it took awhile to check in with admitting. At least the room was ready on time, but the chemo didn't start until 3:00. I'm not excited about that, because he is getting Carboplatin today which runs 6 hours. Followed by Etoposide, which requires that his blood pressure be taken every 15 minutes. So that will happen probably at 10:00, because The Boy will be due for a dose of Zofran in between the two chemo meds. Very annoying. But hopefully they can shift it back a bit for tomorrow, and even if not, it isn't so important, provided that they are willing to shift the third dose of Etoposide back on Sunday.
The 3-day chemo stays are generally easier and also do not require the same additional medication as the 5-day stays. As I found out, my mother had only two chemo medications during her treatment, but because she had one that was related to Cyclophosphamide, called Ifosphamide, she also needed the extra little doses of Mesna, which is the bladder and kidney protectant that The Boy gets. She had that one and Doxorubicin/Adriamycin. That's the one that turns your pee red.
I am a bit concerned because The Boy still has his cold. I am also not thrilled that I have it and Musical Daddy feels like he might be getting it too. Likely, since Grandma is staying with him, she'll get it as well. Of course, Grandma never whines. She doesn't complain and she doesn't get upset. She'll stay up late with The Boy or amuse him in the middle of the night. She hops in the car for visits...and of course, she is here every three weeks. Not to say that she never complains about anything, but she is remarkable and self-sacrificing because she loves The Boy and she loves us too.
Hopefully, I can get through this weekend. We both are singing for Easter and my voice is in questionable condition due to this cold. Of course, I can't take much for it. AirBorne, which normally saves my behind when I feel like I am getting sick, is off-limits for pregnant women.
One of The Boy's oncologists is pregnant with her second child, about 6 or 7 weeks behind me. Additionally, one of the nurses at the treatment center is expecting her second about a week after I am, but since hers will be a scheduled C-section, she'll possibly be in at the same time that I am. There must be something about the center--be careful when you drink the water there.
Anyhow, Boy needs Mom. Later.
Monday, April 6, 2009
Living on the edge...
Even though Thursday's white counts weren't great (as I learned later, his ANC was in the 600's), we still had a busy weekend, complete with [paranoid handwiping] socializing. And it seems as though we came through relatively unscathed.
My sister and her boyfriend came for the weekend. That was fun. I would have liked to do some gaming with them. Maybe next time.
Also this weekend, some friends came down to visit, and we had a large gathering at TGIFriday's on Saturday night. 14 people total. A baby, a toddler, three kids, a teenager, and eight grown-ups. I don't especially like Friday's, but it was the easiest place to go with such a crowd. We were debating as to whether to bring The Boy and decided that if we were careful, he'd be fine.
Following dinner, we had the baby and his parents over. It was already 8:30 when they arrived, and both little guys were awake much later than either set of parents were expecting. The younger boy ended up being very interested in The Boy's toys. Toy cleaning immediately following. Nothing personal, but it was a good idea.
A bit about this other little guy: he is very friendly and outgoing, very expressive, and a lot of fun. He is 10.5 months old and is just starting to take his first steps. Watching him made us do a lot of what-iffing. This was what The Boy was supposed to be like at 10.5 months. Granted, he crawled later than this other little boy, so he probably would not have walked until closer to 1 year, but we realized exactly how reserved The Boy really is. He is still sweet and affectionate, but it usually takes him awhile to warm up to people. He is active and rowdy, but probably less than he otherwise would be, considering that he usually goes around with pretty low hemoglobin levels, translating to less energy. Some of the differences in the two boys are also attributable to the little one having been in daycare and The Boy always being cared for on his own (first Daddy, then Ms. R, then me). But I guess it's just extra sensitivity because this boy was around the age that The Boy was at diagnosis, which is when things went haywire.
Big plans for this week: we are going to Harrisburg for Passover! Just The Boy and me, with my family. Musical Daddy has a procedure in the morning on Wednesday and will be doing the Thursday service for Easter. I was hired to do the Easter gig but I said that I'd be unavailable that Thursday. Not a big deal--the more important stuff that I need to do is the Monday and Friday services, because in those I am one of six singers.
We will be returning mighty early on Friday morning so that we can get The Boy in for chemo. Another count check Wednesday before we leave, of course, but it should be fine.
The Boy still has hair on his head. Just fuzz, really, but the color is a medium brown. I wonder how much longer it will last. He didn't lose his hair until much later on with the last treatment, so maybe the time that he had to regrow it will allow him to keep it longer. Of course that makes putting stickers on his head a lot less fun.
My sister and her boyfriend came for the weekend. That was fun. I would have liked to do some gaming with them. Maybe next time.
Also this weekend, some friends came down to visit, and we had a large gathering at TGIFriday's on Saturday night. 14 people total. A baby, a toddler, three kids, a teenager, and eight grown-ups. I don't especially like Friday's, but it was the easiest place to go with such a crowd. We were debating as to whether to bring The Boy and decided that if we were careful, he'd be fine.
Following dinner, we had the baby and his parents over. It was already 8:30 when they arrived, and both little guys were awake much later than either set of parents were expecting. The younger boy ended up being very interested in The Boy's toys. Toy cleaning immediately following. Nothing personal, but it was a good idea.
A bit about this other little guy: he is very friendly and outgoing, very expressive, and a lot of fun. He is 10.5 months old and is just starting to take his first steps. Watching him made us do a lot of what-iffing. This was what The Boy was supposed to be like at 10.5 months. Granted, he crawled later than this other little boy, so he probably would not have walked until closer to 1 year, but we realized exactly how reserved The Boy really is. He is still sweet and affectionate, but it usually takes him awhile to warm up to people. He is active and rowdy, but probably less than he otherwise would be, considering that he usually goes around with pretty low hemoglobin levels, translating to less energy. Some of the differences in the two boys are also attributable to the little one having been in daycare and The Boy always being cared for on his own (first Daddy, then Ms. R, then me). But I guess it's just extra sensitivity because this boy was around the age that The Boy was at diagnosis, which is when things went haywire.
Big plans for this week: we are going to Harrisburg for Passover! Just The Boy and me, with my family. Musical Daddy has a procedure in the morning on Wednesday and will be doing the Thursday service for Easter. I was hired to do the Easter gig but I said that I'd be unavailable that Thursday. Not a big deal--the more important stuff that I need to do is the Monday and Friday services, because in those I am one of six singers.
We will be returning mighty early on Friday morning so that we can get The Boy in for chemo. Another count check Wednesday before we leave, of course, but it should be fine.
The Boy still has hair on his head. Just fuzz, really, but the color is a medium brown. I wonder how much longer it will last. He didn't lose his hair until much later on with the last treatment, so maybe the time that he had to regrow it will allow him to keep it longer. Of course that makes putting stickers on his head a lot less fun.
Friday, April 3, 2009
The valley
Today is day ten post chemo, where his white count (and possibly other counts) are the lowest. Thus, we stayed in today.
He gets his Neupogen shots to help those white cells rebound, but he still drops low especially after Cytoxan chemo. I forget that with the three day treatment he is usually back up by the second weekend, but with the five day, he is not.
Today I did a lot of housework. I am exhausted. The fun part was organizing the shelves in the kitchen. Every time The Boy saw food he liked, he insisted on having some. Cereals, raisins, bars, chips...some just to taste and see if he liked them. And avocado. Lots of it. I think he ate almost an entire one today. Awesome--lots of good fat and calories.
On the Bactrim--no luck. He took maybe half a dose when I alternated it with Zofran. Almost none this evening. Problem: it seems to cause him to cough. The cough started in the morning and went away after about two hours. Then it came back after the next attempt. Hmm...so IV meds it is. Musical Daddy said it's just not worth it to keep trying with the liquid. We have enough stress with Neupogen.
So hopefully we will have a good, if careful, weekend.
He gets his Neupogen shots to help those white cells rebound, but he still drops low especially after Cytoxan chemo. I forget that with the three day treatment he is usually back up by the second weekend, but with the five day, he is not.
Today I did a lot of housework. I am exhausted. The fun part was organizing the shelves in the kitchen. Every time The Boy saw food he liked, he insisted on having some. Cereals, raisins, bars, chips...some just to taste and see if he liked them. And avocado. Lots of it. I think he ate almost an entire one today. Awesome--lots of good fat and calories.
On the Bactrim--no luck. He took maybe half a dose when I alternated it with Zofran. Almost none this evening. Problem: it seems to cause him to cough. The cough started in the morning and went away after about two hours. Then it came back after the next attempt. Hmm...so IV meds it is. Musical Daddy said it's just not worth it to keep trying with the liquid. We have enough stress with Neupogen.
So hopefully we will have a good, if careful, weekend.
Good news and bad in the count department
Good news: The Boy needed neither blood nor platelets at his appointment. Means that we didn't stay for too long and didn't need to return the next day. Bad news: whites were down, so he still needs his neupogen shots. They weren't so low that we need to keep him in the house and away from all people, but until they start coming up, he still gets his shots. Probably until Monday's count check.
Win some, lose some.
Win some, lose some.
Wednesday, April 1, 2009
Preggo Brain
Went food shopping with The Boy, stopped by Daddy's school since the timing was good and he came out to give kisses. Then he asked if I was able to find something at the store, which I wasn't, so I went to Big Lots where I knew it was, since The Boy was in a good mood. Fun trip, got several good things. Got home, went to unload the car...and realized that all my Big Lots stuff was still in the cart!!
I went back to the store and, fortunately, the stuff was still in the cart. I explained to a lady in the parking lot what happened and she said "Girl you're lucky it's still here!"
With my mental state, I said "I'm lucky that I left the stuff and remembered the baby!"
I went back to the store and, fortunately, the stuff was still in the cart. I explained to a lady in the parking lot what happened and she said "Girl you're lucky it's still here!"
With my mental state, I said "I'm lucky that I left the stuff and remembered the baby!"
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