I have the sniffles, so I am not allowed to go near The Boy. Makes me sad because he's my boy and I love him. So, today, my sisters came and we got pedicures. This evening, we've been playing Rock Band together. I wish that Musical Daddy could have this kind of fun with us, but he's busy being a good daddy. I think they've been asleep for awhile.
I feel secure knowing that The Boy been responding well to everything so far. He seems to be having another good day.
Probably by tomorrow evening, when we have our Hanukkah party, I'll be clear to go see The Boy. I miss him.
Saturday, December 20, 2008
Friday, December 19, 2008
All Safe and Sound
I left the hospital this evening with the knowledge that The Boy is so loved by the two greatest people in the world--my mother, who drops everything for The Boy when he needs her. She repeatedly says that her life is a piece of cake at home. Which is somewhat true in that she has a pretty flexible schedule, except for the whole kitchen fire thing. And my husband--I walked out to the parking lot and discovered that he had removed the snow from my car. SO sweet.
The Boy finished his chemo meds without incident. His dinner was also finished without much incident. Except when he dropped his applesauce cup, half-finished, and it went everywhere. After we had just cleaned the toys and playmat. Sigh.
Will give the full report tomorrow. Right now I think I forgot to close the lid on the washing machine. Again.
EDIT: no I didn't--it's just running quietly because it is not full of bluejeans.
The Boy finished his chemo meds without incident. His dinner was also finished without much incident. Except when he dropped his applesauce cup, half-finished, and it went everywhere. After we had just cleaned the toys and playmat. Sigh.
Will give the full report tomorrow. Right now I think I forgot to close the lid on the washing machine. Again.
EDIT: no I didn't--it's just running quietly because it is not full of bluejeans.
Time keeps on slippin'...
Although we arrived at the hospital in the morning, as we were instructed, The Boy did not start his chemo until 5:15 PM (preceded by Zofran, of course).
A distinct improvement over last time, when the chemo started at about 10 or 11 PM.
The problem with the chemo happening at night instead of in the morning is that the second medicine that he gets every time is one that requires them to take his blood pressure every 15 minutes. Sometimes he sleeps through the process. Usually he doesn't. So we'd prefer to have it happen during the time when he--and we--are supposed to be awake.
5:15 PM still isn't great, because it means that the process, his dinner is interrupted. It is likely that he won't want to eat dinner while he's here. If he would anyway.
The first medication, which is the Cytoxan, is just about done, and the Etoposide will be coming in soon. The Boy is asleep right now--just our luck--resting with/on Grandma.
A distinct improvement over last time, when the chemo started at about 10 or 11 PM.
The problem with the chemo happening at night instead of in the morning is that the second medicine that he gets every time is one that requires them to take his blood pressure every 15 minutes. Sometimes he sleeps through the process. Usually he doesn't. So we'd prefer to have it happen during the time when he--and we--are supposed to be awake.
5:15 PM still isn't great, because it means that the process, his dinner is interrupted. It is likely that he won't want to eat dinner while he's here. If he would anyway.
The first medication, which is the Cytoxan, is just about done, and the Etoposide will be coming in soon. The Boy is asleep right now--just our luck--resting with/on Grandma.
Let's get this going
We arrived at the hospital around 9:45. I spent a few minutes at the admissions desk, and then up we went.
The room that we're in this time for The Boy's treatment was the same room he was in when we were first admitted for his initial diagnosis. Granted, all the rooms look the same, but I have a memory for many things useless.
His port was accessed and IV hooked up a little before 11:45. They will hydrate him with the IV fluids, and once he is sufficiently hydrated, they will start chemo. So it should be sometime this afternoon, as opposed to the middle of the night like last time. We've learned our lesson in that regard.
The complex part of this whole operation is that the snow has really begun to come down, and I'm concerned about how that will affect overall hospital operations. The Boy's nurse said that they do not allow the day shift to leave until the night shift arrives. One by one, as replacements come, they get to leave. Laundry could be an issue, which was why the nurse hooked us up with lots of extra hospital gowns and bedding pads. Hopefully food will still work out.
Speaking of which... I'm hungry! Musical Daddy and I took advantage of the fact that I didn't need to work (and we were up anyway) to go to the diner for breakfast. I had chocolate chip pancakes. But then, that was at 7:15 AM, and it's now 12:25 PM. I'll go hunting for food soon enough.
I'll keep the updates coming. Our room is one that doesn't get great phone reception unless you have a certain carrier, which we don't. So if you would like to call, drop me an email and I'll send you the room phone.
The room that we're in this time for The Boy's treatment was the same room he was in when we were first admitted for his initial diagnosis. Granted, all the rooms look the same, but I have a memory for many things useless.
His port was accessed and IV hooked up a little before 11:45. They will hydrate him with the IV fluids, and once he is sufficiently hydrated, they will start chemo. So it should be sometime this afternoon, as opposed to the middle of the night like last time. We've learned our lesson in that regard.
The complex part of this whole operation is that the snow has really begun to come down, and I'm concerned about how that will affect overall hospital operations. The Boy's nurse said that they do not allow the day shift to leave until the night shift arrives. One by one, as replacements come, they get to leave. Laundry could be an issue, which was why the nurse hooked us up with lots of extra hospital gowns and bedding pads. Hopefully food will still work out.
Speaking of which... I'm hungry! Musical Daddy and I took advantage of the fact that I didn't need to work (and we were up anyway) to go to the diner for breakfast. I had chocolate chip pancakes. But then, that was at 7:15 AM, and it's now 12:25 PM. I'll go hunting for food soon enough.
I'll keep the updates coming. Our room is one that doesn't get great phone reception unless you have a certain carrier, which we don't. So if you would like to call, drop me an email and I'll send you the room phone.
Isn't It Grand
WAY too long between entries.
Monday was a concert. Tuesday was supposed to be a concert, but it got cancelled in the evening because of weather. Wednesday was a party at the Pancake House for our niece's birthday. Thursday...oy.
The concerts that were supposed to happen on Tuesday were moved to Thursday. There was already a concert on Thursday. This necessitated a change in the schedule and created a large concert. I'm not sure what was worse--the fact that there were kids who were unavailable and couldn't come due to the rescheduling, or the fact that there were kids who did come, but at the wrong time, and then they missed performing. A letter went to the teachers telling them about the time changes, but apparently some of the teachers neglected to hand out the letter. It was very telling that two students from the same class who are otherwise responsible ended up not making it in time. They were pretty upset. So were their parents. So was I.
The principal explained my situation to the audience at the end of the concert, praising my work in the school and letting them know that I'd be leaving to care for The Boy. He also asked for applause in honor of The Boy. The fans roared. I love these people. I love those kids. I'll miss them tremendously.
I wish The Boy had been there, but coming to a school with a compromised immune system is just...stupid.
Grandma is here. She's the greatest. We're leaving soon for his next inpatient chemo.
Oh, did I mention? No school today!!!! It didn't start snowing yet, but it seems like half of New Jersey had school cancelled. I won't complain.
Monday was a concert. Tuesday was supposed to be a concert, but it got cancelled in the evening because of weather. Wednesday was a party at the Pancake House for our niece's birthday. Thursday...oy.
The concerts that were supposed to happen on Tuesday were moved to Thursday. There was already a concert on Thursday. This necessitated a change in the schedule and created a large concert. I'm not sure what was worse--the fact that there were kids who were unavailable and couldn't come due to the rescheduling, or the fact that there were kids who did come, but at the wrong time, and then they missed performing. A letter went to the teachers telling them about the time changes, but apparently some of the teachers neglected to hand out the letter. It was very telling that two students from the same class who are otherwise responsible ended up not making it in time. They were pretty upset. So were their parents. So was I.
The principal explained my situation to the audience at the end of the concert, praising my work in the school and letting them know that I'd be leaving to care for The Boy. He also asked for applause in honor of The Boy. The fans roared. I love these people. I love those kids. I'll miss them tremendously.
I wish The Boy had been there, but coming to a school with a compromised immune system is just...stupid.
Grandma is here. She's the greatest. We're leaving soon for his next inpatient chemo.
Oh, did I mention? No school today!!!! It didn't start snowing yet, but it seems like half of New Jersey had school cancelled. I won't complain.
Sunday, December 14, 2008
I've figured it out. Maybe.
Based on previous knowledge from The Boy's other treatment regimen, and based on his response to this one, I am speculating that each chemo treatment, at least by the end of it, is going to be lousy. We'll scale back his diet to include only the most basic and bland things, to be sure that he keeps food down. For the 10 days after he finishes the chemo, his condition will also be pretty lousy, as his counts will be dropping and he'll be getting more tired. We should be prepared for a neutropenic fever hospital stay during this time.
Then, he'll get better. He'll gradually begin to eat more of his usual food favorites. He'll play more. His counts will be better and we won't need to do neupogen shots for awhile. We can socialize too, provided that people aren't sick.
Then, we'll do chemo again and restart the whole process.
It makes for probably half the time being crappy and the other half being wonderful, because he's such a wonderful boy.
Then, he'll get better. He'll gradually begin to eat more of his usual food favorites. He'll play more. His counts will be better and we won't need to do neupogen shots for awhile. We can socialize too, provided that people aren't sick.
Then, we'll do chemo again and restart the whole process.
It makes for probably half the time being crappy and the other half being wonderful, because he's such a wonderful boy.
Friday, December 12, 2008
Great Day
Top to bottom, start to finish, it was a wonderful day.
This morning, The Boy enjoyed his oatmeal and yogurt for breakfast. He was very enthusiastic about it. Oatmeal is, and always has been, a finger food. It dries up pretty quickly. We mix it with a bit of honey, which doesn't do much for the consistency. Yogurt, however, requires a spoon.
The next item on the agenda was just the fact that my kids at school were really pretty good today. Because I'll be leaving soon and the concerts are coming up, in addition to reviewing concert music, my 6th grade students have been spending half of their lesson times, this lesson cycle and next, collecting stickers. We have sticker charts, and selected exercises or pieces are played for a sticker. Many of the students' collections were not so complete, for whatever reason. The pieces don't have to be "perfect" but need to be played competently in the group. It is very easy to see, with string students, who knows it and who does not, just by watching fingers and bows.
The Boy went for an appointment at the treatment center today, accompanied by Ms. R, and the expectation was that he'd need another blood transfusion. Our fear, as I mentioned, was another fever. When he arrived, as the nurses and child life specialist, and Ms. R, mentioned, he looked pale, and they were sure he'd need blood. Except...have you met me? Have you met my mother or my father-in-law? We're the whitest, palest, most colorless people you could meet, and it's not surprising that my child would share that trait.
They now know that appearances can be deceiving. The Boy had great counts--reds, whites, and platelets--and was sent on his merry way after enough of the bloodwork was back. His ANC is about 14,000 which means that we don't even have to do Neupogen shots for a whole week! Longer, because he doesn't get it while on chemo either.
Major props to Ms. R for staying 2 daytime shifts in the hospital with The Boy and taking him to this appointment today. Of course, she was paid for the time and paid a bit extra because I insisted on doing so, but still, no one signed her up for this kind of babysitting, and she was very helpful in that regard.
It appeared yesterday that she also taught him to blow kisses although I haven't yet gotten him to repeat what he did yesterday.
After we got home, we had a great snack. He had rice cakes--no longer allowed in the living room because they're very messy--and a little snack pack of applesauce as well as several bites of cottage cheese with cherry preserves. That's one of my new favorite snacks. I figured that since they sell "cottage doubles" with the fruit in them that preserves works just as well for extra flavor. I was glad to see that he enjoyed that one. Full-fat cottage cheese is a great snack for him because it is higher in fat--good for kids his age anyway--and calories.
When Musical Daddy returned home, we enjoyed some crazy baby time on the bed before leaving to go to a party at the hospital.
Crazy, right? A party at the hospital?
Actually, the party was held in the hospital auditorium and it was FANTASTIC. It was for all the patients and former patients at The Boy's treatment center. We're so glad that we went. There was good food (mostly kid food, of course). Most of the people that we had met during our numerous visits to the center were there, as well as the nurses, the child life specialist, and the two doctors that The Boy usually sees. There was a clown, a magician, amazingly detailed face painting (which The Boy wasn't quite ready for so we didn't try it), stickers, lots of music, and such a lively environment. All the kids were having a great time, and the adults seemed pretty happy to see the children enjoying themselves.
The Boy did quite a bit of assisted walking at the party, where we hold his hands and he walks. He's working on it, he really is.
He also put several stickers on his head.
This morning, The Boy enjoyed his oatmeal and yogurt for breakfast. He was very enthusiastic about it. Oatmeal is, and always has been, a finger food. It dries up pretty quickly. We mix it with a bit of honey, which doesn't do much for the consistency. Yogurt, however, requires a spoon.
The next item on the agenda was just the fact that my kids at school were really pretty good today. Because I'll be leaving soon and the concerts are coming up, in addition to reviewing concert music, my 6th grade students have been spending half of their lesson times, this lesson cycle and next, collecting stickers. We have sticker charts, and selected exercises or pieces are played for a sticker. Many of the students' collections were not so complete, for whatever reason. The pieces don't have to be "perfect" but need to be played competently in the group. It is very easy to see, with string students, who knows it and who does not, just by watching fingers and bows.
The Boy went for an appointment at the treatment center today, accompanied by Ms. R, and the expectation was that he'd need another blood transfusion. Our fear, as I mentioned, was another fever. When he arrived, as the nurses and child life specialist, and Ms. R, mentioned, he looked pale, and they were sure he'd need blood. Except...have you met me? Have you met my mother or my father-in-law? We're the whitest, palest, most colorless people you could meet, and it's not surprising that my child would share that trait.
They now know that appearances can be deceiving. The Boy had great counts--reds, whites, and platelets--and was sent on his merry way after enough of the bloodwork was back. His ANC is about 14,000 which means that we don't even have to do Neupogen shots for a whole week! Longer, because he doesn't get it while on chemo either.
Major props to Ms. R for staying 2 daytime shifts in the hospital with The Boy and taking him to this appointment today. Of course, she was paid for the time and paid a bit extra because I insisted on doing so, but still, no one signed her up for this kind of babysitting, and she was very helpful in that regard.
It appeared yesterday that she also taught him to blow kisses although I haven't yet gotten him to repeat what he did yesterday.
After we got home, we had a great snack. He had rice cakes--no longer allowed in the living room because they're very messy--and a little snack pack of applesauce as well as several bites of cottage cheese with cherry preserves. That's one of my new favorite snacks. I figured that since they sell "cottage doubles" with the fruit in them that preserves works just as well for extra flavor. I was glad to see that he enjoyed that one. Full-fat cottage cheese is a great snack for him because it is higher in fat--good for kids his age anyway--and calories.
When Musical Daddy returned home, we enjoyed some crazy baby time on the bed before leaving to go to a party at the hospital.
Crazy, right? A party at the hospital?
Actually, the party was held in the hospital auditorium and it was FANTASTIC. It was for all the patients and former patients at The Boy's treatment center. We're so glad that we went. There was good food (mostly kid food, of course). Most of the people that we had met during our numerous visits to the center were there, as well as the nurses, the child life specialist, and the two doctors that The Boy usually sees. There was a clown, a magician, amazingly detailed face painting (which The Boy wasn't quite ready for so we didn't try it), stickers, lots of music, and such a lively environment. All the kids were having a great time, and the adults seemed pretty happy to see the children enjoying themselves.
The Boy did quite a bit of assisted walking at the party, where we hold his hands and he walks. He's working on it, he really is.
He also put several stickers on his head.
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