He does this every now and then. Pretty frequently. He snuggles up on my lap. Then he falls asleep. And I'm stuck.
It's a very tricky situation. And one that many children outgrow at a younger age. But...such is life.
I love this guy. He's cute.
He enjoyed yogurt, both at breakfast and for a snack later. He had steak for dinner, and he couldn't get enough. Soy milk was also a relatively enjoyable drink.
Hopefully (TMI alert) he'll do a little better in the poop department now that he's eating a wider variety of food again and actually drinking a decent amount of fluids.
Thursday, December 11, 2008
Wednesday, December 10, 2008
Home again
We were sent home, thank goodness. It just feels better to be home and all together, and not have the extra monkey on our backs of going back and forth to the hospital.
On Friday, The Boy does have to go back to the center for counts and, likely, another transfusion. Hopefully, he will respond more favorably this time to the blood. I don't even know (and maybe someone could tell me) if getting a fever as a result of a blood transfusion is normal. It doesn't seem too strange to me; they do give Tylenol and Benadryl before they give you blood.
We just switched off sitting with The Boy and trying to get him to sleep in his bed. It seems like for awhile it will just take patience, if we want him to spend any time in there.
On Friday, The Boy does have to go back to the center for counts and, likely, another transfusion. Hopefully, he will respond more favorably this time to the blood. I don't even know (and maybe someone could tell me) if getting a fever as a result of a blood transfusion is normal. It doesn't seem too strange to me; they do give Tylenol and Benadryl before they give you blood.
We just switched off sitting with The Boy and trying to get him to sleep in his bed. It seems like for awhile it will just take patience, if we want him to spend any time in there.
Tuesday, December 9, 2008
Unpredictable, indeed
I'm going to make this quick because I'm really quite tired but I have to share all of what's going on.
Yesterday I had off from school because, I believe, it was a Muslim holiday. We have a fair representation of Muslim students, so it makes sense. We booked The Boy's pediatrician appointment ("well" visit...sort of) for that day, and that was our first stop.
We didn't wait long, but he said that next time, we won't be waiting at all. Just call, and we'll go directly into a room and that will be that. He said that The Boy looked good. He had lost a bit of weight but had still grown an inch. He also gained a bit of head circumference. Normally, they'd do a weight check on kids his age who lose weight, but he had just had a stomach virus, and chemo, so what do we expect? He also didn't seem too concerned about his walking and talking. He is almost walking, so that's good enough, and he'll make the switch when he's ready. He does say a few things, like "Mom" and "ap" for apple or applesauce, and a few times he's said "juice." After 18 months, we are to encourage him to say more things and point a little less, but right now he's doing what he's supposed to do, even in the face of what he has to experience.
After this was a visit to the treatment center. No matter what, I need to learn that he doesn't ever just go in for a "visit" there. I think that maybe once since we started with this has he ever just gone in for counts. His chemo treatments with just Vincristine were short visits, but so very rarely has he had just a finger stick, wait around for numbers, and out the door.
Yesterday was no different. Counts were crappy. Hemoglobin was very low, so they brought in some blood. That took quite awhile, as it usually does take awhile for blood to arrive and it is almost 3 hours of actual transfusion.
Usually, when a patient receives a blood transfusion, they get Benadryl and Tylenol, to stave off any possible effects from the whole thing. Also, more central to the story, a person getting a transfusion usually feels like a million bucks by the end of it.
But, alas, it was not to be.
The Boy was sleepy all day, as was to be expected with low hemoglobin. But he just didn't perk up, at all, after getting the new blood. In fact, his temperature, which was fine in the morning and only a little bit high in the afternoon, was even more elevated. And past the magic number. An automatic admission ticket.
The Boy's fever briefly visited 103 (although Musical Daddy is certain that it wasn't that high because he's usually pretty good at figuring out what The Boy's temperature is, just by touch). After that, though, it dropped down to normal and has stayed there ever since, B"H. His counts are getting better but still are not high enough for discharge.
I stayed last night; Musical Daddy is doing the next two nights. We don't know when he's getting out. Well, we do, but as per usual, discharge comes as a result of meeting criteria, not as a date or time in anyone's planner. So when his ANC is over 500, he's good to go. He has been on Neupogen for over a week. Let's see it work its magic.
Yesterday I had off from school because, I believe, it was a Muslim holiday. We have a fair representation of Muslim students, so it makes sense. We booked The Boy's pediatrician appointment ("well" visit...sort of) for that day, and that was our first stop.
We didn't wait long, but he said that next time, we won't be waiting at all. Just call, and we'll go directly into a room and that will be that. He said that The Boy looked good. He had lost a bit of weight but had still grown an inch. He also gained a bit of head circumference. Normally, they'd do a weight check on kids his age who lose weight, but he had just had a stomach virus, and chemo, so what do we expect? He also didn't seem too concerned about his walking and talking. He is almost walking, so that's good enough, and he'll make the switch when he's ready. He does say a few things, like "Mom" and "ap" for apple or applesauce, and a few times he's said "juice." After 18 months, we are to encourage him to say more things and point a little less, but right now he's doing what he's supposed to do, even in the face of what he has to experience.
After this was a visit to the treatment center. No matter what, I need to learn that he doesn't ever just go in for a "visit" there. I think that maybe once since we started with this has he ever just gone in for counts. His chemo treatments with just Vincristine were short visits, but so very rarely has he had just a finger stick, wait around for numbers, and out the door.
Yesterday was no different. Counts were crappy. Hemoglobin was very low, so they brought in some blood. That took quite awhile, as it usually does take awhile for blood to arrive and it is almost 3 hours of actual transfusion.
Usually, when a patient receives a blood transfusion, they get Benadryl and Tylenol, to stave off any possible effects from the whole thing. Also, more central to the story, a person getting a transfusion usually feels like a million bucks by the end of it.
But, alas, it was not to be.
The Boy was sleepy all day, as was to be expected with low hemoglobin. But he just didn't perk up, at all, after getting the new blood. In fact, his temperature, which was fine in the morning and only a little bit high in the afternoon, was even more elevated. And past the magic number. An automatic admission ticket.
The Boy's fever briefly visited 103 (although Musical Daddy is certain that it wasn't that high because he's usually pretty good at figuring out what The Boy's temperature is, just by touch). After that, though, it dropped down to normal and has stayed there ever since, B"H. His counts are getting better but still are not high enough for discharge.
I stayed last night; Musical Daddy is doing the next two nights. We don't know when he's getting out. Well, we do, but as per usual, discharge comes as a result of meeting criteria, not as a date or time in anyone's planner. So when his ANC is over 500, he's good to go. He has been on Neupogen for over a week. Let's see it work its magic.
Sunday, December 7, 2008
A few positive oddities
I meant to do nothing today.
It really hasn't been such a bad day so far. Rather pleasant, actually. The Boy and I slept in past 9. I drew up his medicines...and made the decision that we were going to push back the shot to later and later in the day, so that it would be in the early evening, which is actually convenient, instead of in the morning when we're rushing. I also heated up his cereal.
He got his blood pressure medicine, in applesauce, and clearly was interested in more. Breakfast for him was rice cereal with a little bit of honey, and applesauce. He has become quite adept at spoon use over the past 2 weeks, which has made feeding him his plain post-illness post-chemo diet that much easier.
We played in his room for awhile, with a few toys. I should mention that we never play in his room because for quite awhile, it wasn't really such a place for playing. Then he started to get a little tired, so we sat in the rocking chair, and I read him a Winnie The Pooh story. It was the one in which we learn that Tiggers don't climb trees. At this point he was definitely sleepy so I decided to go for it.
I put The Boy in his very own bed.
He protested, but he needed only to be snuggled a bit...then for me to hold his hand, and all the while I was reading the next story. It's much easier than trying to get him to stay in a crib, because I could just sit next to him on the floor. Then I let go of his hand, as he was clearly asleep, but it still looked like he was watching me. Very carefully. I sat for just a bit longer, and then I got up to take a shower.
He stayed asleep for almost an hour and a half. I was able to shower and relax before Musical Daddy returned from rehearsal.
Uncle B and the California cousins were on iChat as The Boy woke up. Then, time for his Neupogen shot. It's hard to do this to him, every day, but he gets Daddy snuggles immediately after, and as I'm preparing to do it, I tell him, "I know it hurts, but it's SO good for you." Not much consolation, but at least he knows that he gets hugs afterwards. The hugs are just as helpful to Musical Daddy, I'd imagine.
We watched a football game that we'd rather not talk about. The boys fell asleep for a little while, and I went out to (finally) pick up some prescriptions. Upon my return, I cleaned all the stuff out of my car. Perhaps tomorrow I'll run the vacuum cleaner in there. It's been quite awhile since I cleaned out my car, and every time I got in it, I would feel overwhelmed by the fact that I didn't have time to clean it out.
One less problem to worry about, at least. To continue the idea from my last entry, it really does feel better to unclutter one's life a little more.
It really hasn't been such a bad day so far. Rather pleasant, actually. The Boy and I slept in past 9. I drew up his medicines...and made the decision that we were going to push back the shot to later and later in the day, so that it would be in the early evening, which is actually convenient, instead of in the morning when we're rushing. I also heated up his cereal.
He got his blood pressure medicine, in applesauce, and clearly was interested in more. Breakfast for him was rice cereal with a little bit of honey, and applesauce. He has become quite adept at spoon use over the past 2 weeks, which has made feeding him his plain post-illness post-chemo diet that much easier.
We played in his room for awhile, with a few toys. I should mention that we never play in his room because for quite awhile, it wasn't really such a place for playing. Then he started to get a little tired, so we sat in the rocking chair, and I read him a Winnie The Pooh story. It was the one in which we learn that Tiggers don't climb trees. At this point he was definitely sleepy so I decided to go for it.
I put The Boy in his very own bed.
He protested, but he needed only to be snuggled a bit...then for me to hold his hand, and all the while I was reading the next story. It's much easier than trying to get him to stay in a crib, because I could just sit next to him on the floor. Then I let go of his hand, as he was clearly asleep, but it still looked like he was watching me. Very carefully. I sat for just a bit longer, and then I got up to take a shower.
He stayed asleep for almost an hour and a half. I was able to shower and relax before Musical Daddy returned from rehearsal.
Uncle B and the California cousins were on iChat as The Boy woke up. Then, time for his Neupogen shot. It's hard to do this to him, every day, but he gets Daddy snuggles immediately after, and as I'm preparing to do it, I tell him, "I know it hurts, but it's SO good for you." Not much consolation, but at least he knows that he gets hugs afterwards. The hugs are just as helpful to Musical Daddy, I'd imagine.
We watched a football game that we'd rather not talk about. The boys fell asleep for a little while, and I went out to (finally) pick up some prescriptions. Upon my return, I cleaned all the stuff out of my car. Perhaps tomorrow I'll run the vacuum cleaner in there. It's been quite awhile since I cleaned out my car, and every time I got in it, I would feel overwhelmed by the fact that I didn't have time to clean it out.
One less problem to worry about, at least. To continue the idea from my last entry, it really does feel better to unclutter one's life a little more.
Feng Shui
I haven't read it and I don't know much about it, but it feels pretty good to start organizing things around here.
The Boy has a nice neat bedroom, complete with new toddler bed (this is actually the one that he has). We have a new bed, and we each have new dressers. Additionally, we got two more items in the same set so that we actually have more drawer space. Our stuff is from IKEA. Most of it was bought on sale during black Friday.
We haven't had much time to shop for much of anything or buy any "treats" in awhile.
My aunt started the process by getting a toy organizer for the living room and another shelving item that is made up of 9 cubes for The Boy's room. She also got those large wire shelves, one for the guest room and one for the kitchen. You see these shelves in restaurant kitchens.
That's what we've been up to today. Additionally, Musical Daddy's brother installed two ceiling fans, one of them with a light.
The Boy has been very sweet today, although in need of extra snuggles. Not a problem. Mama will provide.
The Boy has a nice neat bedroom, complete with new toddler bed (this is actually the one that he has). We have a new bed, and we each have new dressers. Additionally, we got two more items in the same set so that we actually have more drawer space. Our stuff is from IKEA. Most of it was bought on sale during black Friday.
We haven't had much time to shop for much of anything or buy any "treats" in awhile.
My aunt started the process by getting a toy organizer for the living room and another shelving item that is made up of 9 cubes for The Boy's room. She also got those large wire shelves, one for the guest room and one for the kitchen. You see these shelves in restaurant kitchens.
That's what we've been up to today. Additionally, Musical Daddy's brother installed two ceiling fans, one of them with a light.
The Boy has been very sweet today, although in need of extra snuggles. Not a problem. Mama will provide.
Friday, December 5, 2008
May you live in interesting times
A curse, for sure.
This has been a truly "interesting" week for all of us. The Boy was discharged from the hospital, finally. We were initially expecting a Monday or Tuesday discharge, not Thursday evening, but so it goes. Complications from the stomach bug that he had meant that it was even more difficult for him to keep food and fluid in his system. The oncologist emphasized the importance of hydration following the administration of Cytoxan (Cyclophosphamide).
Backing up a bit: The Boy is getting three medications during the course of this treatment, each one scarier than the next. All cause the traditional cancer/chemo side effects such as hair loss and nausea, but each one also has its own little bonus gift. Cytoxan/Cyclophosphamide can cause sores or other damage to the kidneys (kidney, in The Boy's case) and bladder. He gets an additional medicine called Mesna for that. Etoposide, is a chemotherapy agent that has a greater risk than some other agents of causing blood cancers (i.e. leukemia) later in life. It also causes drops in blood pressure; while it is being administered, The Boy has his blood pressure taken every 15 minutes. Carboplatinum is another fun one: it can cause upper register hearing loss. The Boy had a hearing test just prior to his treatment, and he did perfectly.
I am not incredibly concerned about the hearing loss. The audiologist said that she had just tested another Wilms Tumor patient who was at the end of her treatment, and her hearing was still fine. Even so...any readers familiar with the Mosquito ring tone? It is said that people over the age of 25 or so cannot hear this sound, so kids use it as a ring tone. Too bad for them--I can still hear it quite well. Anyhow, The Boy may end up with the hearing of a 30 year old at age 3. While that's a drag, I'll still take that over not going all out in the fight against this cancer.
At this point, I am looking forward to finishing my job and all the obligations entailed within. As much as I enjoy my work, The Boy and I need the flexibility. I don't want to hesitate to take him to the treatment center because of work. I don't want to miss my kids at work, either.
A diversion: I don't know who of my students or colleagues reads my blog; as a result, I rarely talk about work beyond the occasional remark about having had a good day. Today, though, I feel the need, because I have nothing to say that is negative, damaging, hurtful, or anything like that. Because I'm not 12 and trying to hurt someone's feelings by leaving a nastygram on their myspace. Anyhow...I was working with some kids whom I will REALLY REALLY miss. I had three guy cello players and a viola player who had missed her lesson earlier that day. The viola player has a great personality. She is also a good player but her personality is what makes her stand out. The cello players are all very serious. Not really...as in, they are silly kids, but when it comes to playing, they get right down to business.
Last schoolyear, I had a truly amazing class of 6th grade students. My colleagues and I have discussed it; this class is going to be one of those really special groups that comes along only once or twice in a decade. They say that the kids who just graduated from the high school in the orchestra were that kind of class. These kids are the same type. Instrumentation top to bottom is incredible. Probably 17 of those kids are nothing short of incredible. And another 20 are strong and competent, really fine musicians, and even the ones that aren't the best are still capable and willing to learn.
I talk about this other class now, fondly, because I thought today, while listening to these three gentlemen play, that they had really taken their places as leaders on their instruments. I was concerned that the holes left by the previous class would be hard to fill, but they got it done, for sure. I was similarly impressed by the young lady playing the viola, and how far she has come, but it's not such a great year for violas in the 6th grade. Not so many.
By the way, parents, the viola is a great instrument option for a child in school looking to play. There are not as many players, meaning that your child will get extra attention and be able to move up the ranks more quickly. It is not much more expensive than a violin (and usually, to rent one costs the same). It's the thing to do if you're a bit more of an individual who doesn't have the guts to play bass.
No, I didn't mean that.
So...back to my reality. How sad, when thinking about work is the diversion.
The Boy was, indeed, discharged yesterday evening, but he had to return to the treatment center (outpatient) because he failed to keep his breakfast down. They kept him there until it got close to closing time, giving him IV fluids, and then they sent him home, thank goodness. We are under strict instructions to keep his diet REALLY simple.
Dinner tonight was cream of rice with a little dab of honey (a pleasant sweetener, and good to use now that The Boy is over a year old) along with applesauce. The Boy handles the spoon pretty well these days. He had, from time to time, worked the spoon a few times to get some pudding or yogurt, but during his hospital stay, he happened upon some ice cream and that was all the motivation that he needed to use a spoon. Mashed potatoes are handled similarly. Very cute: last night, The Boy was feeding himself applesauce. He had requested it after being given his usual blood pressure medicine crushed in it. He ate about half of the little container (you know, one of those single serving with the foil lid), and when he felt that he had had enough, he pulled the half-opened foil lid back onto the cup.
The Boy has been asleep on my lap for nearly an hour. It's so nice to get these snuggles.
This has been a truly "interesting" week for all of us. The Boy was discharged from the hospital, finally. We were initially expecting a Monday or Tuesday discharge, not Thursday evening, but so it goes. Complications from the stomach bug that he had meant that it was even more difficult for him to keep food and fluid in his system. The oncologist emphasized the importance of hydration following the administration of Cytoxan (Cyclophosphamide).
Backing up a bit: The Boy is getting three medications during the course of this treatment, each one scarier than the next. All cause the traditional cancer/chemo side effects such as hair loss and nausea, but each one also has its own little bonus gift. Cytoxan/Cyclophosphamide can cause sores or other damage to the kidneys (kidney, in The Boy's case) and bladder. He gets an additional medicine called Mesna for that. Etoposide, is a chemotherapy agent that has a greater risk than some other agents of causing blood cancers (i.e. leukemia) later in life. It also causes drops in blood pressure; while it is being administered, The Boy has his blood pressure taken every 15 minutes. Carboplatinum is another fun one: it can cause upper register hearing loss. The Boy had a hearing test just prior to his treatment, and he did perfectly.
I am not incredibly concerned about the hearing loss. The audiologist said that she had just tested another Wilms Tumor patient who was at the end of her treatment, and her hearing was still fine. Even so...any readers familiar with the Mosquito ring tone? It is said that people over the age of 25 or so cannot hear this sound, so kids use it as a ring tone. Too bad for them--I can still hear it quite well. Anyhow, The Boy may end up with the hearing of a 30 year old at age 3. While that's a drag, I'll still take that over not going all out in the fight against this cancer.
At this point, I am looking forward to finishing my job and all the obligations entailed within. As much as I enjoy my work, The Boy and I need the flexibility. I don't want to hesitate to take him to the treatment center because of work. I don't want to miss my kids at work, either.
A diversion: I don't know who of my students or colleagues reads my blog; as a result, I rarely talk about work beyond the occasional remark about having had a good day. Today, though, I feel the need, because I have nothing to say that is negative, damaging, hurtful, or anything like that. Because I'm not 12 and trying to hurt someone's feelings by leaving a nastygram on their myspace. Anyhow...I was working with some kids whom I will REALLY REALLY miss. I had three guy cello players and a viola player who had missed her lesson earlier that day. The viola player has a great personality. She is also a good player but her personality is what makes her stand out. The cello players are all very serious. Not really...as in, they are silly kids, but when it comes to playing, they get right down to business.
Last schoolyear, I had a truly amazing class of 6th grade students. My colleagues and I have discussed it; this class is going to be one of those really special groups that comes along only once or twice in a decade. They say that the kids who just graduated from the high school in the orchestra were that kind of class. These kids are the same type. Instrumentation top to bottom is incredible. Probably 17 of those kids are nothing short of incredible. And another 20 are strong and competent, really fine musicians, and even the ones that aren't the best are still capable and willing to learn.
I talk about this other class now, fondly, because I thought today, while listening to these three gentlemen play, that they had really taken their places as leaders on their instruments. I was concerned that the holes left by the previous class would be hard to fill, but they got it done, for sure. I was similarly impressed by the young lady playing the viola, and how far she has come, but it's not such a great year for violas in the 6th grade. Not so many.
By the way, parents, the viola is a great instrument option for a child in school looking to play. There are not as many players, meaning that your child will get extra attention and be able to move up the ranks more quickly. It is not much more expensive than a violin (and usually, to rent one costs the same). It's the thing to do if you're a bit more of an individual who doesn't have the guts to play bass.
No, I didn't mean that.
So...back to my reality. How sad, when thinking about work is the diversion.
The Boy was, indeed, discharged yesterday evening, but he had to return to the treatment center (outpatient) because he failed to keep his breakfast down. They kept him there until it got close to closing time, giving him IV fluids, and then they sent him home, thank goodness. We are under strict instructions to keep his diet REALLY simple.
Dinner tonight was cream of rice with a little dab of honey (a pleasant sweetener, and good to use now that The Boy is over a year old) along with applesauce. The Boy handles the spoon pretty well these days. He had, from time to time, worked the spoon a few times to get some pudding or yogurt, but during his hospital stay, he happened upon some ice cream and that was all the motivation that he needed to use a spoon. Mashed potatoes are handled similarly. Very cute: last night, The Boy was feeding himself applesauce. He had requested it after being given his usual blood pressure medicine crushed in it. He ate about half of the little container (you know, one of those single serving with the foil lid), and when he felt that he had had enough, he pulled the half-opened foil lid back onto the cup.
The Boy has been asleep on my lap for nearly an hour. It's so nice to get these snuggles.
Monday, December 1, 2008
If this isn't the bottom of the barrel...
Musical Daddy is sick and in the hospital. Technically hasn't been admitted but he's been there since last night.
I'm sick too, and at home, by myself.
My parents are with The Boy. Grandma stayed over again, and she is very tired, so Grandpa is helping out too.
Musical Daddy's father is away on a trip.
I can't really miss more work but I have to because I can't stand.
I don't even know what's up with The Boy because no one has called me in hours, nor do I know what's up with Musical Daddy.
Help....
I'm sick too, and at home, by myself.
My parents are with The Boy. Grandma stayed over again, and she is very tired, so Grandpa is helping out too.
Musical Daddy's father is away on a trip.
I can't really miss more work but I have to because I can't stand.
I don't even know what's up with The Boy because no one has called me in hours, nor do I know what's up with Musical Daddy.
Help....
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