Tuesday. That's the most recent date we've been given. He's on neupogen, so that's one less problem that we have to worry about, is the white counts. Any other blood count problem could be fixed easily but the white cells have to be grown.
Nice thing about that is that we take Tuesday and Wednesday off, and then we have the next two days off from school anyway because of the NJEA convention. He may even be out of the hospital by the following week.
Here's hoping...
Friday, October 31, 2008
Thursday, October 30, 2008
That which the normal mom does
One of the first thoughts that I had following The Boy's diagnosis was that I'm going to be a "cancer mom" for a really long time. Technically forever, but at some point the responsibility will shift more to The Boy in terms of his follow-up. Everything takes on a new meaning when you're a cancer mom. Sometimes it is also easy to forget that children go through certain trials whether or not they are being treated for cancer.
For example, The Boy has had a few puking episodes this week and currently has a bit of a runny nose. He's teething. But he has cancer and is on chemo--is it the chemo or the teeth that are causing him to be a major grouch-man? I can't tell. Most moms wonder which tooth it is.
I look forward to surgery, because it's one more milestone. Most moms look forward to walking, running, and better table manners.
I am pleased with The Boy's table manners, even given the circumstances.
Some moms second-guess the pediatrician. I second-guessed the oncologist when I thought that they should have given The Boy neupogen before the surgery was to happen. She said that there was just no way to know, even though I knew that his levels were not done dropping. More to the point, as my mother said, Neupogen is a very expensive medication, and insurance won't cover it until it is REALLY low.
Falling asleep...baby on me...it's contagious!
For example, The Boy has had a few puking episodes this week and currently has a bit of a runny nose. He's teething. But he has cancer and is on chemo--is it the chemo or the teeth that are causing him to be a major grouch-man? I can't tell. Most moms wonder which tooth it is.
I look forward to surgery, because it's one more milestone. Most moms look forward to walking, running, and better table manners.
I am pleased with The Boy's table manners, even given the circumstances.
Some moms second-guess the pediatrician. I second-guessed the oncologist when I thought that they should have given The Boy neupogen before the surgery was to happen. She said that there was just no way to know, even though I knew that his levels were not done dropping. More to the point, as my mother said, Neupogen is a very expensive medication, and insurance won't cover it until it is REALLY low.
Falling asleep...baby on me...it's contagious!
Wednesday, October 29, 2008
Once again, it's NOT go time
White counts were too low; no surgery tomorrow. Now we wait, while the new tumor just grows and grows...
Crap.
Crap.
Tuesday, October 28, 2008
I wanna push you around...
Since I last wrote, my mother came and went, for an extra visit. Awesome. She loves The Boy, and Musical Daddy and I okay too.
The Boy had bloodwork yesterday and will have more tomorrow. He will also have an EKG. By the way, we only recently found out that he needed the EKG as a prerequisite to surgery. Would have been nice to tell us this earlier but hey--what more do we expect? We made two trips for nothing, after all...
The Boy's last meal tomorrow is breakfast. After that, he's on mama milk and clear stuff. That will be truly exciting. As in, something of a nightmare. Doctor's orders, though. It's just a real drag when it seems like he is actually eating this week, only to lose a day of that good food. The Boy has weighed the same for quite awhile now. And he does look like a cancer patient. Complete with lack of eyebrows.
He's not in the greatest mood right now because more of those teeth are on their way in. The molars made their debuts over the end of the summer, and now come the canines.
Less than two days until surgery and it's one more thing to cross off the to-do list.
The Boy had bloodwork yesterday and will have more tomorrow. He will also have an EKG. By the way, we only recently found out that he needed the EKG as a prerequisite to surgery. Would have been nice to tell us this earlier but hey--what more do we expect? We made two trips for nothing, after all...
The Boy's last meal tomorrow is breakfast. After that, he's on mama milk and clear stuff. That will be truly exciting. As in, something of a nightmare. Doctor's orders, though. It's just a real drag when it seems like he is actually eating this week, only to lose a day of that good food. The Boy has weighed the same for quite awhile now. And he does look like a cancer patient. Complete with lack of eyebrows.
He's not in the greatest mood right now because more of those teeth are on their way in. The molars made their debuts over the end of the summer, and now come the canines.
Less than two days until surgery and it's one more thing to cross off the to-do list.
Thursday, October 23, 2008
Ain't no sunshine....
Just got a call from the oncologist, who received the results from the hospital in Philadelphia.
It's more tumor.
It is still a favorable histology tumor, which means that there are no anaplastic features. But it's fast as heck, and it means that the chemo isn't doing the trick. After the surgery next week, in which they will remove the tumor from the right side, which was there in the first place, and remove the new tumor from the left side.
No changes will be made to The Boy's treatment regimen until the pathology comes back following the surgery, after which the plot will thicken.
It's more tumor.
It is still a favorable histology tumor, which means that there are no anaplastic features. But it's fast as heck, and it means that the chemo isn't doing the trick. After the surgery next week, in which they will remove the tumor from the right side, which was there in the first place, and remove the new tumor from the left side.
No changes will be made to The Boy's treatment regimen until the pathology comes back following the surgery, after which the plot will thicken.
Wednesday, October 22, 2008
You'd think we never feed this kid!
The Boy was finally given some breakfast after not having had any real meal since Monday's dinner. He was allowed to eat last night but was still a little queasy from the sedation, so he just had a few bites of cereal bar.
The way that nutrition service works here is that you call and order it and it comes within 45 minutes or so. There is a menu, and kids can have whatever they want.
Except that they don't make omelettes for little guys! I guess they have a "junior" designation. I'm sure that they do, since first thing in the morning he was still on "clears" and wasn't going to get his omelette anyway. I asked them for the omelette and they said that they only do scrambled eggs and cheese for little ones. I then said, "You mean you can't put vegetables in there?" Perhaps they were assuming that since The Boy is so little, he could never eat an omelette, and it would be a waste of energy to make him one.
Wrong they would be, as he powered through his eggs and turkey sausage. He could not get that stuff in his mouth fast enough.
We should be good to go home soon. Just in time to go to chemo.
The way that nutrition service works here is that you call and order it and it comes within 45 minutes or so. There is a menu, and kids can have whatever they want.
Except that they don't make omelettes for little guys! I guess they have a "junior" designation. I'm sure that they do, since first thing in the morning he was still on "clears" and wasn't going to get his omelette anyway. I asked them for the omelette and they said that they only do scrambled eggs and cheese for little ones. I then said, "You mean you can't put vegetables in there?" Perhaps they were assuming that since The Boy is so little, he could never eat an omelette, and it would be a waste of energy to make him one.
Wrong they would be, as he powered through his eggs and turkey sausage. He could not get that stuff in his mouth fast enough.
We should be good to go home soon. Just in time to go to chemo.
Tuesday, October 21, 2008
'Round Midnight...
We've been admitted. Or rather, The Boy has. That was awhile ago but he was sleeping on me so I was unable to update. And now, finally, he is asleep and NOT on me, so I can share information.
I should mention that the wireless internet didn't seem to be working in this room. I tried it several times; finally I opened a different web browser and in we went! Furthermore, I switched back to my regular browser and that worked too! Hooray! When you really want to get it done, you find a way.
The last post of mine is one that I shall never post again, for fear of karmic retribution. Never again will I say "The Boy's numbers were good" if numbers need to be retaken because that's the easiest way to get them to screw up. Apparently his hemoglobin dropped considerably enough for them to speculate that there was internal bleeding. An ultrasound showed that that was not the case, at least not that could be seen, but the doctors in the department, as well as his surgeon, agreed that it wouldn't be so good for him to be so far away and then have something bad happen. Fine. I'll take it. And kudos to the surgeon for coming to us personally.
Musical Daddy speculated that whomever did the procedure screwed up, to which I responded that the ultrasound showed otherwise and that the site of the incision looked fine as well. My theory was that someone did screw up, indeed, but it wasn't the doctors in radiology--it was the lab tech. The first hemoglobin reading was 12, which is fine for someone not on chemo and stellar for someone who is. More precisely, it is the minimum requirement for blood donation. However, I can't remember the last time that The Boy has had a hemoglobin level of 12 since he got into the chemo process, even after having had a transfusion 2 weeks or so ago. It is possible for him to have bounced back that quickly...but just not that likely.
Adding insult to injury for The Boy was the fact after FINALLY getting to crawl around and play, and then relax and go to sleep, the nurse wasn't able to get a blood return from the port. Greeeaaat. She said that she'd bring in another nurse and if not, call the IV team. The other nurse was able to get a blood return, at the expense of The Boy's first natural sleep since he woke up this morning (or, at least, since he got out of Grandpa's car) because she changed his position several times. One of our buddies at the usual treatment center, who is 5, has a port and sometimes has to "do yoga" in order to get a blood return. Such was the case with The Boy, who ended up lying facedown on my lap.
I'm tired but I just can't sleep. I asked for a bed instead of a crib so that I could sleep in it with The Boy, who, as you know, will not stand for a crib. It's a hospital bed. You know the kind. The Boy was so unsettled for so long and finally fell asleep...facing the wrong way. I'm going to move him...eventually.
This is a pretty nice hospital. If today were the first day that we had seen it, I would have pretty much nothing but lovely things to say about it. The Boy has a great room this evening, at least. Private room but pretty large, with a day bed, private bathroom, lots of counter space, TV, and PS2 to boot. There is food in the pantry which is...somewhere...and (this is one of my favorite little perks) the patients are issued pajama pants to go with their gowns! The Boy is wearing purple jammies with space koalas on them. Love the space koalas, could do without the purple although you know he's all boy.
Grandpa has been amazing. He's crashing in a lounge down the hall for the night. Plenty of room in here but he's not really the co-ed slumber party type.
I'll try some sleep..after I try turning The Boy around without waking him...yea right.
I should mention that the wireless internet didn't seem to be working in this room. I tried it several times; finally I opened a different web browser and in we went! Furthermore, I switched back to my regular browser and that worked too! Hooray! When you really want to get it done, you find a way.
The last post of mine is one that I shall never post again, for fear of karmic retribution. Never again will I say "The Boy's numbers were good" if numbers need to be retaken because that's the easiest way to get them to screw up. Apparently his hemoglobin dropped considerably enough for them to speculate that there was internal bleeding. An ultrasound showed that that was not the case, at least not that could be seen, but the doctors in the department, as well as his surgeon, agreed that it wouldn't be so good for him to be so far away and then have something bad happen. Fine. I'll take it. And kudos to the surgeon for coming to us personally.
Musical Daddy speculated that whomever did the procedure screwed up, to which I responded that the ultrasound showed otherwise and that the site of the incision looked fine as well. My theory was that someone did screw up, indeed, but it wasn't the doctors in radiology--it was the lab tech. The first hemoglobin reading was 12, which is fine for someone not on chemo and stellar for someone who is. More precisely, it is the minimum requirement for blood donation. However, I can't remember the last time that The Boy has had a hemoglobin level of 12 since he got into the chemo process, even after having had a transfusion 2 weeks or so ago. It is possible for him to have bounced back that quickly...but just not that likely.
Adding insult to injury for The Boy was the fact after FINALLY getting to crawl around and play, and then relax and go to sleep, the nurse wasn't able to get a blood return from the port. Greeeaaat. She said that she'd bring in another nurse and if not, call the IV team. The other nurse was able to get a blood return, at the expense of The Boy's first natural sleep since he woke up this morning (or, at least, since he got out of Grandpa's car) because she changed his position several times. One of our buddies at the usual treatment center, who is 5, has a port and sometimes has to "do yoga" in order to get a blood return. Such was the case with The Boy, who ended up lying facedown on my lap.
I'm tired but I just can't sleep. I asked for a bed instead of a crib so that I could sleep in it with The Boy, who, as you know, will not stand for a crib. It's a hospital bed. You know the kind. The Boy was so unsettled for so long and finally fell asleep...facing the wrong way. I'm going to move him...eventually.
This is a pretty nice hospital. If today were the first day that we had seen it, I would have pretty much nothing but lovely things to say about it. The Boy has a great room this evening, at least. Private room but pretty large, with a day bed, private bathroom, lots of counter space, TV, and PS2 to boot. There is food in the pantry which is...somewhere...and (this is one of my favorite little perks) the patients are issued pajama pants to go with their gowns! The Boy is wearing purple jammies with space koalas on them. Love the space koalas, could do without the purple although you know he's all boy.
Grandpa has been amazing. He's crashing in a lounge down the hall for the night. Plenty of room in here but he's not really the co-ed slumber party type.
I'll try some sleep..after I try turning The Boy around without waking him...yea right.
A little bright spot:
The Boy's blood counts were normal today. Very glad to hear that--at least something is going right.
Approximate wakeup time:
3:30. Or 4:00. Until then, they're just going to keep him drugged. The idea is that he'll probably be in pain from the procedure otherwise. He needs to stay on his back and if he's not asleep, that probably won't happen.
He is probably not going to be himself tomorrow. Likely a bit hung over.
He is probably not going to be himself tomorrow. Likely a bit hung over.
and the story is...
The mass on the left side was solid. More tumor perhaps? Or a mass caused by infection? Rare, but so are Wilms tumors. Not the second spleen, and not a fluid-filled infection. They took a few little samples, and they're sending it to the lab. So...a few days, perhaps, and then we'll know.
The good news is that we don't have to stay overnight at the hospital, most likely. I guess I'm glad for that even though the overnight stay to treat infection would have been a more desirable option.
How scared should we be? Don't know.
The fact is, 90-something percent of kids may survive Wilms tumor, but if you're worried that your kid might not be one of them, those stats don't matter.
The good news is that we don't have to stay overnight at the hospital, most likely. I guess I'm glad for that even though the overnight stay to treat infection would have been a more desirable option.
How scared should we be? Don't know.
The fact is, 90-something percent of kids may survive Wilms tumor, but if you're worried that your kid might not be one of them, those stats don't matter.
Here we sit...
and I guess we're doing okay.
The Boy is currently having his needle biopsy done. Father-in-law (Grandpa; but just so that we're clear, it's Musical Daddy's father) and I are sitting here, waiting. The first nicety that we've discovered here is that they assigned The Boy to a room and even though he isn't in it, we still get to hang out here. It is no more or less comfortable than the waiting room but it means that we don't have to move our stuff, and it also means that we don't have to be around bunches of other people.
But, retreating a bit, here's the rundown of our day so far:
Grandpa came for dinner and stayed over, as our house is further south than his. He had planned to take us on this little voyage so that I wouldn't be by myself, and because he is just that kind of helpful guy. We woke up and had planned to leave at 6:30. Last time we had planned the same thing and ended up leaving at 7:00. This time we did a little better, although right as I was strapping David in the carseat, I noticed that something smelled a little funny...okay, quick detour back to the house to change the poopy diaper, THEN we were on our way. We stopped at Dunkin' Donuts to grab a quick bagel breakfast, of course.
We hit some traffic along the way, which was to be expected. Grandpa has a GPS which has a feature that can design alternate routes around traffic problems. Grandpa dropped me off and went to go park, and The Boy and I made it in just in time. He was in a relatively good mood, still, although he didn't like being confined to one spot while I was sitting at registration.
Then back to the room. It's a little creepy to me that the entire department is the "sedation" department, but I guess that's not incorrect. The room resembles any other short-stay room, although it is a bit bigger than the rooms at our regular hospital. I liked the fact that while we did have to wait for things, we didn't really feel neglected during the pre-procedure assessments. The Boy did start to get restless, but a ride around in the wagon, pulled by Grandpa, really helped him to feel at ease. The bubbles helped too.
The port access was a little more dramatic than usual, probably because he was already irritable from having no food. By the way--the term for pre-procedure fasting is "NPO" which stands for....something. I would Google it but I don't feel like it. He was more aggravated, crying harder than he sometimes does for port access, and it took him longer to calm down.
Sometimes, he is able to get through the port access procedure without crying, sucking his thumb instead, but that's only when he's been allowed to sit up on my lap. Usually they have to pin him down, which aggravates him quite a bit more than the needle does. If appropriately guarded, he won't abandon his sucking thumb to swat at the needle.
They took blood, as they always do, and I'm assuming that they're going to get CBC/Diff done. They may take more blood later in the day.
He's back! More later.
The Boy is currently having his needle biopsy done. Father-in-law (Grandpa; but just so that we're clear, it's Musical Daddy's father) and I are sitting here, waiting. The first nicety that we've discovered here is that they assigned The Boy to a room and even though he isn't in it, we still get to hang out here. It is no more or less comfortable than the waiting room but it means that we don't have to move our stuff, and it also means that we don't have to be around bunches of other people.
But, retreating a bit, here's the rundown of our day so far:
Grandpa came for dinner and stayed over, as our house is further south than his. He had planned to take us on this little voyage so that I wouldn't be by myself, and because he is just that kind of helpful guy. We woke up and had planned to leave at 6:30. Last time we had planned the same thing and ended up leaving at 7:00. This time we did a little better, although right as I was strapping David in the carseat, I noticed that something smelled a little funny...okay, quick detour back to the house to change the poopy diaper, THEN we were on our way. We stopped at Dunkin' Donuts to grab a quick bagel breakfast, of course.
We hit some traffic along the way, which was to be expected. Grandpa has a GPS which has a feature that can design alternate routes around traffic problems. Grandpa dropped me off and went to go park, and The Boy and I made it in just in time. He was in a relatively good mood, still, although he didn't like being confined to one spot while I was sitting at registration.
Then back to the room. It's a little creepy to me that the entire department is the "sedation" department, but I guess that's not incorrect. The room resembles any other short-stay room, although it is a bit bigger than the rooms at our regular hospital. I liked the fact that while we did have to wait for things, we didn't really feel neglected during the pre-procedure assessments. The Boy did start to get restless, but a ride around in the wagon, pulled by Grandpa, really helped him to feel at ease. The bubbles helped too.
The port access was a little more dramatic than usual, probably because he was already irritable from having no food. By the way--the term for pre-procedure fasting is "NPO" which stands for....something. I would Google it but I don't feel like it. He was more aggravated, crying harder than he sometimes does for port access, and it took him longer to calm down.
Sometimes, he is able to get through the port access procedure without crying, sucking his thumb instead, but that's only when he's been allowed to sit up on my lap. Usually they have to pin him down, which aggravates him quite a bit more than the needle does. If appropriately guarded, he won't abandon his sucking thumb to swat at the needle.
They took blood, as they always do, and I'm assuming that they're going to get CBC/Diff done. They may take more blood later in the day.
He's back! More later.
Saturday, October 18, 2008
Got one right for sure
Today we went to the diner for breakfast after having missed on this outing for the past several weeks. If the weather is decent (meaning nothing falling from the sky), we walk. I usually get an omelette along with potatoes and toast, which The Boy shares. Musical Daddy often gets a "burrito breakfast" that comes with potatoes as well; he shares the potatoes but not the burrito.
GOOD eatin' this morning. It helped that we put ketchup on breakfast. Everything that we gave The Boy to eat was gone by the time he decided that he was done. I'm so glad...and yet, there's chemo coming up soon so all of this good eating will probably go out the window. At least he has otherwise good eating habits to which he can come back.
Now that The Boy is nearly 14 months old, it's interesting to compare him to other children of a similar age in terms of eating. Three other children that we noticed at the diner come to mind. The first is a boy, almost 2, whom we see every now and then, although today we just noticed him on the way in. When he was smaller, he'd mostly eat tiny pieces of things with his fingers. Now he's a silverware-using guy. We're pretty impressed by his prowess with the fork and spoon.
The other two children, however, were another story. The first child that we saw was pitching fits about being in the high chair. When he finally made it in, he just got a scrap here and there. He also had something in a bottle at the table. The second child looked older than The Boy by only a bit and was sitting in the high chair being spoon-fed oatmeal and bananas. He was drinking from a cup with a straw, though. The family was impressed by the way that The Boy fed himself. I recommended broccoli.
I can't tell you how glad I am that The Boy was feeding himself right from the beginning. The fact that we weren't obsessive about rushing him into eating food, the fact that we never cared about whether he was eating "stage 1" or "stage 2" jarred nonsense, and the fact that we already knew that everything he touched was going into his mouth at some point anyway made the decision pretty easy for us. Musical Daddy was a bit skeptical at first--after a few weeks of The Boy playing with food and eating just a bit at the table, he asked when we were going to grind up a banana and feed it to him--but he bought in pretty quickly as well.
The Boy was eating at restaurants regularly by about 7 months. Before that it was somewhat prohibitive because he was only eating a few things. But as a result of his always sitting at the table with us, for as long as he was able to sit, he always knows how to behave at mealtime.
Score one for us.
GOOD eatin' this morning. It helped that we put ketchup on breakfast. Everything that we gave The Boy to eat was gone by the time he decided that he was done. I'm so glad...and yet, there's chemo coming up soon so all of this good eating will probably go out the window. At least he has otherwise good eating habits to which he can come back.
Now that The Boy is nearly 14 months old, it's interesting to compare him to other children of a similar age in terms of eating. Three other children that we noticed at the diner come to mind. The first is a boy, almost 2, whom we see every now and then, although today we just noticed him on the way in. When he was smaller, he'd mostly eat tiny pieces of things with his fingers. Now he's a silverware-using guy. We're pretty impressed by his prowess with the fork and spoon.
The other two children, however, were another story. The first child that we saw was pitching fits about being in the high chair. When he finally made it in, he just got a scrap here and there. He also had something in a bottle at the table. The second child looked older than The Boy by only a bit and was sitting in the high chair being spoon-fed oatmeal and bananas. He was drinking from a cup with a straw, though. The family was impressed by the way that The Boy fed himself. I recommended broccoli.
I can't tell you how glad I am that The Boy was feeding himself right from the beginning. The fact that we weren't obsessive about rushing him into eating food, the fact that we never cared about whether he was eating "stage 1" or "stage 2" jarred nonsense, and the fact that we already knew that everything he touched was going into his mouth at some point anyway made the decision pretty easy for us. Musical Daddy was a bit skeptical at first--after a few weeks of The Boy playing with food and eating just a bit at the table, he asked when we were going to grind up a banana and feed it to him--but he bought in pretty quickly as well.
The Boy was eating at restaurants regularly by about 7 months. Before that it was somewhat prohibitive because he was only eating a few things. But as a result of his always sitting at the table with us, for as long as he was able to sit, he always knows how to behave at mealtime.
Score one for us.
Friday, October 17, 2008
It's NOT go time
We did, indeed, go to Philadelphia with our bags packed, only to show up for another quick consult that probably could have been done over the phone and then, while we were there, a LONG wait followed by another quick exam from the anesthesia department.
Waste of a sick day, waste of several gallons of gas, and, what's worse, forcing The Boy to go without food for no reason. We were told, several times, that he would be getting the biopsy at that point. Somebody screwed up.
The hospital is just not all that friendly of a place. Perhaps we feel that way because it's not our normal venue and it is far away. Maybe it's because we had to spend way more time than necessary in the exam rooms waiting and attempting to keep The Boy from spending too much time crawling around on the floor, with the germs and such--YOU try telling a kid that age not to crawl around on the floor.
Maybe--and this is the icing on the crap-filled cake--it's also because of our experience with the parking lot. We got our ticket stamped thinking that we'd just insert it and leave, as is always the case when The Boy goes to his normal appointments. Instead, my already-livid husband put the ticket in and...nothing happened. We talked to the woman at the next window, only to be told to back up and go into another line. I got out of the car and stopped traffic for this. Then, we discovered that the parking stamp did not give us free parking but, rather, that we had to pay $3 anyway. They said that we were lucky that it wasn't $16 because that's what a stay as long as ours would have normally cost. Then they gave change in all singles.
$3 every time we have to go there. That adds up in a hurry.
The good news: we do (allegedly) have a date for the biopsy and the surgery (I'll believe it when I see it). The biopsy will be on October 21st, this Tuesday. If he has an infection that needs to be drained and treated, that will require an overnight stay. If it's anything else, he won't. The surgery will be on October 30th, barring any unforeseen "issues" like last week's fever incident.
No monkey costume for Halloween this year. Maybe we'll buy him a cute hat.
Waste of a sick day, waste of several gallons of gas, and, what's worse, forcing The Boy to go without food for no reason. We were told, several times, that he would be getting the biopsy at that point. Somebody screwed up.
The hospital is just not all that friendly of a place. Perhaps we feel that way because it's not our normal venue and it is far away. Maybe it's because we had to spend way more time than necessary in the exam rooms waiting and attempting to keep The Boy from spending too much time crawling around on the floor, with the germs and such--YOU try telling a kid that age not to crawl around on the floor.
Maybe--and this is the icing on the crap-filled cake--it's also because of our experience with the parking lot. We got our ticket stamped thinking that we'd just insert it and leave, as is always the case when The Boy goes to his normal appointments. Instead, my already-livid husband put the ticket in and...nothing happened. We talked to the woman at the next window, only to be told to back up and go into another line. I got out of the car and stopped traffic for this. Then, we discovered that the parking stamp did not give us free parking but, rather, that we had to pay $3 anyway. They said that we were lucky that it wasn't $16 because that's what a stay as long as ours would have normally cost. Then they gave change in all singles.
$3 every time we have to go there. That adds up in a hurry.
The good news: we do (allegedly) have a date for the biopsy and the surgery (I'll believe it when I see it). The biopsy will be on October 21st, this Tuesday. If he has an infection that needs to be drained and treated, that will require an overnight stay. If it's anything else, he won't. The surgery will be on October 30th, barring any unforeseen "issues" like last week's fever incident.
No monkey costume for Halloween this year. Maybe we'll buy him a cute hat.
Thursday, October 16, 2008
It's go time
Tomorrow The Boy has an Appointment. After waiting through whatever caused his sickness last week and waiting a few extra days while the doctors negotiated and consulted and what have you, we are going to Philadelphia.
The catch: we don't really know what's going to happen next. They will do a biopsy of the left side, from the back, while he is getting a CT scan. Just like on House. From there, it could go in several different directions. He could still have some sort of infection, in which case they need to treat it before any surgery happens. We might go home or back to our normal hospital if that's the case. He could still have that extra spleen thing that they were talking about, or the tumor that I hope hasn't grown. If that's the case, he stays and gets surgery. We don't know how long he'll be in the hospital either way.
We get to travel somewhere where we really don't know many people to go through a rather uncertain process. Not so much looking forward to that.
Also not too keen on the fact that twice in a row I'll be missing the same set of classes. "E" day is the best day in my schedule at school. Not that I don't enjoy every day, but "E" day is particularly exciting.
If I don't get to post, check Musical Daddy's blog for updates as well.
The catch: we don't really know what's going to happen next. They will do a biopsy of the left side, from the back, while he is getting a CT scan. Just like on House. From there, it could go in several different directions. He could still have some sort of infection, in which case they need to treat it before any surgery happens. We might go home or back to our normal hospital if that's the case. He could still have that extra spleen thing that they were talking about, or the tumor that I hope hasn't grown. If that's the case, he stays and gets surgery. We don't know how long he'll be in the hospital either way.
We get to travel somewhere where we really don't know many people to go through a rather uncertain process. Not so much looking forward to that.
Also not too keen on the fact that twice in a row I'll be missing the same set of classes. "E" day is the best day in my schedule at school. Not that I don't enjoy every day, but "E" day is particularly exciting.
If I don't get to post, check Musical Daddy's blog for updates as well.
Tuesday, October 14, 2008
on my way to where the air is sweet
Almost a week and no posting from me. You'd think that nothing new was going on...
Well, you're almost right.
I mentioned that The Boy was in the hospital, so I'll give a quick rundown of how that went:
Tuesday late night to the ER which led to a wee-small-hours admission. No eating at all on Wednesday, limited eating on Thursday as well. His choice, not anyone elses, although he still nursed when it was offered. I suppose that since he's such a tzaddik, he fasted for Yom Kippur. The Boy got a blood transfusion one of the nights...I want to say Wednesday night because I stayed with him. He also, unfortunately, violently vomited milk in the middle of the night. Then, 15 minutes later, he violently vomited almost nothing, which was probably more uncomfortable. Keeping in mind that he has still had almost nothing to eat in a few days but has been pumped full of IV fluids to the point where he looks bloated.
Some other points of interest:
The Boy developed some swelling in his testicles. They were pretty sure that it was fluid retention, but they did an ultrasound anyway along with an abdominal ultrasound and a chest x-ray. Surprisingly, The Boy was perfectly still for the ultrasounds. He was less thrilled about the x-ray but the cool thing about it was how clearly I could see the port in there. But then, if you remember the ass-pen episode of Scrubs...
The CT scan taken on Tuesday of last week revealed that the possible lymph node swelling may, in fact, be an "accessory" spleen. Either that it's there and has always been, or that it's growing. It doesn't do anything other than show up on scans and make us think that there's another tumor growing. It still could be another tumor but being that The Boy is on chemo, it would have to be one heck of a nasty tumor to withstand those chemicals and grow in spite of them. Let's all hope that it is not, in fact, a nasty tumor. Come on everyone...hope with me here.
Blood transfusions are AWESOME. My mother said it and it's true--it's like getting recharged.
There's pretty much no such thing as "urgent" in the hospital unless someone stops breathing.
BYOB--bring your own bed.
I made it my business to learn the weight of multiple pocket cloth diaper/insert combinations, in grams. The scale is accurate to the nearest .005, as in, it rounds in one direction or the other to get to a measurement ending in 5 or zero. If you care---the BG 2.0 with insert weighs 125 grams. The HuggaBuns size medium with BG insert weighs 115 grams. The Swaddlebees pocket size medium with HuggaBuns hemp prefold insert weighs 115 grams as well. Convenient because the snap diapers weigh the same. And the Happy Heinys Baseball Diaper with HuggaBuns hemp doubler weighs 100 grams. w00t.
For the next hospital stay, we will order all medications for 1/2 hour before we want them. This way, we can feed The Boy his "applesauce" containing his BP medication while it's actually dinnertime instead of waiting until he has no interest in food and bats the spoon away.
So that pretty much covers the hospital stay. My parents were here and they were wonderful. Especially my mom, who voluntarily spent two nights in the hospital with The Boy, having a pajama party. The Boy was very good, letting her sleep, and she loaded up on those baby snuggles. I should also mention that my dad snores, while my son does not.
I am pleased to report that The Boy is eating again. His current MO seems to be taking a long time to assess the food and its suitability before digging in. He also really seems to like ketchup. And tomato sauce, but that isn't so new. I'm going to stock up on the Heinz Organic ketchup because it doesn't have high fructose corn syrup in it.
By the way, corn growers association, I've read your ads. I think they're full of crap. HFCS is so far removed from corn and shouldn't even have "corn" in its name. Corn syrup is fine. Fructose is also fine. Corn syrup that is specifically processed to have extra sugar? Not fine. Not to mention that plenty of people are sensitive to corn and have a hard time digesting it. It doesn't belong in my ketchup, my tomato sauce, my bread, or my cereal. Perhaps it belongs in ice cream, soda, or other dessert items. But if it's in everything, there is no "moderation." Rant over.
Today's appointment: a few blood draws and an exam, nothing major. Some problems with the port, but they got it going. If it weren't for the fact that The Boy was in the hospital recently, this appointment would have just been for a finger-stick blood test and that would be it. As it was, they needed more blood for a few more labs, meaning that they had to get it from the port.
Numbers were pretty good. Platelets were a little bit low but not too much, and, more importantly, the white count was good. Now (surprise) we wait. The Boy's oncologist expects to hear from the surgeon tomorrow who will have us come down...eventually.
In addition to resecting the remaining tumor, the doctor will also look at the left side to see what that other thing is. I vote spleen.
Well, you're almost right.
I mentioned that The Boy was in the hospital, so I'll give a quick rundown of how that went:
Tuesday late night to the ER which led to a wee-small-hours admission. No eating at all on Wednesday, limited eating on Thursday as well. His choice, not anyone elses, although he still nursed when it was offered. I suppose that since he's such a tzaddik, he fasted for Yom Kippur. The Boy got a blood transfusion one of the nights...I want to say Wednesday night because I stayed with him. He also, unfortunately, violently vomited milk in the middle of the night. Then, 15 minutes later, he violently vomited almost nothing, which was probably more uncomfortable. Keeping in mind that he has still had almost nothing to eat in a few days but has been pumped full of IV fluids to the point where he looks bloated.
Some other points of interest:
The Boy developed some swelling in his testicles. They were pretty sure that it was fluid retention, but they did an ultrasound anyway along with an abdominal ultrasound and a chest x-ray. Surprisingly, The Boy was perfectly still for the ultrasounds. He was less thrilled about the x-ray but the cool thing about it was how clearly I could see the port in there. But then, if you remember the ass-pen episode of Scrubs...
The CT scan taken on Tuesday of last week revealed that the possible lymph node swelling may, in fact, be an "accessory" spleen. Either that it's there and has always been, or that it's growing. It doesn't do anything other than show up on scans and make us think that there's another tumor growing. It still could be another tumor but being that The Boy is on chemo, it would have to be one heck of a nasty tumor to withstand those chemicals and grow in spite of them. Let's all hope that it is not, in fact, a nasty tumor. Come on everyone...hope with me here.
Blood transfusions are AWESOME. My mother said it and it's true--it's like getting recharged.
There's pretty much no such thing as "urgent" in the hospital unless someone stops breathing.
BYOB--bring your own bed.
I made it my business to learn the weight of multiple pocket cloth diaper/insert combinations, in grams. The scale is accurate to the nearest .005, as in, it rounds in one direction or the other to get to a measurement ending in 5 or zero. If you care---the BG 2.0 with insert weighs 125 grams. The HuggaBuns size medium with BG insert weighs 115 grams. The Swaddlebees pocket size medium with HuggaBuns hemp prefold insert weighs 115 grams as well. Convenient because the snap diapers weigh the same. And the Happy Heinys Baseball Diaper with HuggaBuns hemp doubler weighs 100 grams. w00t.
For the next hospital stay, we will order all medications for 1/2 hour before we want them. This way, we can feed The Boy his "applesauce" containing his BP medication while it's actually dinnertime instead of waiting until he has no interest in food and bats the spoon away.
So that pretty much covers the hospital stay. My parents were here and they were wonderful. Especially my mom, who voluntarily spent two nights in the hospital with The Boy, having a pajama party. The Boy was very good, letting her sleep, and she loaded up on those baby snuggles. I should also mention that my dad snores, while my son does not.
I am pleased to report that The Boy is eating again. His current MO seems to be taking a long time to assess the food and its suitability before digging in. He also really seems to like ketchup. And tomato sauce, but that isn't so new. I'm going to stock up on the Heinz Organic ketchup because it doesn't have high fructose corn syrup in it.
By the way, corn growers association, I've read your ads. I think they're full of crap. HFCS is so far removed from corn and shouldn't even have "corn" in its name. Corn syrup is fine. Fructose is also fine. Corn syrup that is specifically processed to have extra sugar? Not fine. Not to mention that plenty of people are sensitive to corn and have a hard time digesting it. It doesn't belong in my ketchup, my tomato sauce, my bread, or my cereal. Perhaps it belongs in ice cream, soda, or other dessert items. But if it's in everything, there is no "moderation." Rant over.
Today's appointment: a few blood draws and an exam, nothing major. Some problems with the port, but they got it going. If it weren't for the fact that The Boy was in the hospital recently, this appointment would have just been for a finger-stick blood test and that would be it. As it was, they needed more blood for a few more labs, meaning that they had to get it from the port.
Numbers were pretty good. Platelets were a little bit low but not too much, and, more importantly, the white count was good. Now (surprise) we wait. The Boy's oncologist expects to hear from the surgeon tomorrow who will have us come down...eventually.
In addition to resecting the remaining tumor, the doctor will also look at the left side to see what that other thing is. I vote spleen.
Wednesday, October 8, 2008
Hospital Hound (repost)
Don't know how I managed to post this on Facebook and not here, but here we go (from early this morning):
We're in the hospital because The Boy had a fever last night that showed up gradually over the course of the day. Musical Daddy is glad that I'm able to tell by touch whether The Boy "feels warm" or not. I wasn't able to do that before. And some of the little pediatric hospital gowns have a picture of "Hospital Hound" on them, which is immensely cute.
During the day it was a high temperature but still within the normal range, sort of, in the afternoon it was a little higher, dinnertime it was about 99.1 axillary which, adding a degree because the axillary temperature (underarm) is a degree lower than what the temp would be with the thermometer inserted elsewhere, is about 100.1, and then after 8:00 it was 100.3 axillary.
I didn't rush, necessarily, although I started packing stuff as soon as I had put in the call to the treatment center. I figured that we may as well pack up our stuff right then rather than make a second trip (which Musical Daddy ended up doing anyway, as he left his chorus rehearsal before we had even left the house).
I may have seen this coming although it did seem pretty sudden. One sign: The Boy did a LOT of sleeping today. I wrote that off because he had also had a CT scan done under anesthesia, and I remember the last time Musical Daddy had had surgery he was groggy and sleeping extra for days, so I have that in the back of my mind every time The Boy needs to be sedated (which seems to be pretty often, unfortunately, and will be so until he is old enough to lie still for CT Scans).
He didn't eat much yesterday, although I guess I attributed that to a combination of anesthesia and a holdover from last week's illness. That said, he did seem fine on Monday, as I mentioned.
After I placed the call and started packing up, I knew that something was wrong. I put The Boy on our bed to hang out and he was just...lying there. He wasn't asleep. He seemed tired, which would cause him to be less active, but he was just so complacent. That's the word for it, and it's an odd mannerism coming from this child who is SO opinionated. He didn't complain about the fact that I'd walk in and out of the room or that I didn't stop to play with him. He didn't get up and crawl around on the bed. He didn't even play with the TiVo remote that I had left on the bed. He just lay there for a good 20 minutes doing nothing.
I got a major headache last night and I was kicking myself for not just taking a Tylenol before we left the house. Fortunately I did get some Tylenol and it made me feel better, allowing me to get some sleep. A nice...4 hours or so. Now I'm awake and, fortunately, the headache is gone for now. I'm speculating that it was something I ate. Didn't particularly want to cook anything elaborate because I didn't want to overfill the fridge, so I made rice noodles for The Boy and me and ate some gefilte fish to get some protein. The Boy had leftovers from lunch that he didn't eat--a chicken and veggie dish that I had made en masse on Sunday night.
I'll echo Musical Daddy's sentiment--anyone want to bring us some dinner? It's Yom Kippur starting tonight and I'd love a good pre-fast meal (even though I'm not strictly fasting because I'm "still" breastfeeding The Boy).
Yom Kippur. Ah yes. One of the few Jewish holidays that doesn't fall under the umbrella of "They tried to kill us; we won; let's eat." Because first of all, you don't eat. And secondly, this is, instead, one of the holidays that stems from obligation. Sukkot, the feast of the harvest, starts next week and it also does not fall under that umbrella.
It's the Day of Atonement. And the last thing that I want to do is sit around bellyaching about how miserable my life is just because my kid is sick. Because really, life isn't too bad overall especially considering how much support we get from family and friends even when things are "normal." Furthermore, the fact that my kid is sick doesn't give me license to be a jerk, a slacker, or a whiner. I am hoping that I have been none of these things and have tried to make things right in situations where I feel that I may have wronged someone. Since the deadline is tomorrow, if I have wronged you, please forgive me.
The Boy is still sleeping, and good thing because he needs it, and I think I'm going to tap into my reserve of snacks. Or maybe take a shower...
We're in the hospital because The Boy had a fever last night that showed up gradually over the course of the day. Musical Daddy is glad that I'm able to tell by touch whether The Boy "feels warm" or not. I wasn't able to do that before. And some of the little pediatric hospital gowns have a picture of "Hospital Hound" on them, which is immensely cute.
During the day it was a high temperature but still within the normal range, sort of, in the afternoon it was a little higher, dinnertime it was about 99.1 axillary which, adding a degree because the axillary temperature (underarm) is a degree lower than what the temp would be with the thermometer inserted elsewhere, is about 100.1, and then after 8:00 it was 100.3 axillary.
I didn't rush, necessarily, although I started packing stuff as soon as I had put in the call to the treatment center. I figured that we may as well pack up our stuff right then rather than make a second trip (which Musical Daddy ended up doing anyway, as he left his chorus rehearsal before we had even left the house).
I may have seen this coming although it did seem pretty sudden. One sign: The Boy did a LOT of sleeping today. I wrote that off because he had also had a CT scan done under anesthesia, and I remember the last time Musical Daddy had had surgery he was groggy and sleeping extra for days, so I have that in the back of my mind every time The Boy needs to be sedated (which seems to be pretty often, unfortunately, and will be so until he is old enough to lie still for CT Scans).
He didn't eat much yesterday, although I guess I attributed that to a combination of anesthesia and a holdover from last week's illness. That said, he did seem fine on Monday, as I mentioned.
After I placed the call and started packing up, I knew that something was wrong. I put The Boy on our bed to hang out and he was just...lying there. He wasn't asleep. He seemed tired, which would cause him to be less active, but he was just so complacent. That's the word for it, and it's an odd mannerism coming from this child who is SO opinionated. He didn't complain about the fact that I'd walk in and out of the room or that I didn't stop to play with him. He didn't get up and crawl around on the bed. He didn't even play with the TiVo remote that I had left on the bed. He just lay there for a good 20 minutes doing nothing.
I got a major headache last night and I was kicking myself for not just taking a Tylenol before we left the house. Fortunately I did get some Tylenol and it made me feel better, allowing me to get some sleep. A nice...4 hours or so. Now I'm awake and, fortunately, the headache is gone for now. I'm speculating that it was something I ate. Didn't particularly want to cook anything elaborate because I didn't want to overfill the fridge, so I made rice noodles for The Boy and me and ate some gefilte fish to get some protein. The Boy had leftovers from lunch that he didn't eat--a chicken and veggie dish that I had made en masse on Sunday night.
I'll echo Musical Daddy's sentiment--anyone want to bring us some dinner? It's Yom Kippur starting tonight and I'd love a good pre-fast meal (even though I'm not strictly fasting because I'm "still" breastfeeding The Boy).
Yom Kippur. Ah yes. One of the few Jewish holidays that doesn't fall under the umbrella of "They tried to kill us; we won; let's eat." Because first of all, you don't eat. And secondly, this is, instead, one of the holidays that stems from obligation. Sukkot, the feast of the harvest, starts next week and it also does not fall under that umbrella.
It's the Day of Atonement. And the last thing that I want to do is sit around bellyaching about how miserable my life is just because my kid is sick. Because really, life isn't too bad overall especially considering how much support we get from family and friends even when things are "normal." Furthermore, the fact that my kid is sick doesn't give me license to be a jerk, a slacker, or a whiner. I am hoping that I have been none of these things and have tried to make things right in situations where I feel that I may have wronged someone. Since the deadline is tomorrow, if I have wronged you, please forgive me.
The Boy is still sleeping, and good thing because he needs it, and I think I'm going to tap into my reserve of snacks. Or maybe take a shower...
Hospital Hound
We're in the hospital because The Boy had a fever last night that showed up gradually over the course of the day. Musical Daddy is glad that I'm able to tell by touch whether The Boy "feels warm" or not. I wasn't able to do that before. And some of the little pediatric hospital gowns have a picture of "Hospital Hound" on them, which is immensely cute.
During the day it was a high temperature but still within the normal range, sort of, in the afternoon it was a little higher, dinnertime it was about 99.1 axillary which, adding a degree because the axillary temperature (underarm) is a degree lower than what the temp would be with the thermometer inserted elsewhere, is about 100.1, and then after 8:00 it was 100.3 axillary.
I didn't rush, necessarily, although I started packing stuff as soon as I had put in the call to the treatment center. I figured that we may as well pack up our stuff right then rather than make a second trip (which Musical Daddy ended up doing anyway, as he left his chorus rehearsal before we had even left the house).
I may have seen this coming although it did seem pretty sudden. One sign: The Boy did a LOT of sleeping today. I wrote that off because he had also had a CT scan done under anesthesia, and I remember the last time Musical Daddy had had surgery he was groggy and sleeping extra for days, so I have that in the back of my mind every time The Boy needs to be sedated (which seems to be pretty often, unfortunately, and will be so until he is old enough to lie still for CT Scans).
He didn't eat much yesterday, although I guess I attributed that to a combination of anesthesia and a holdover from last week's illness. That said, he did seem fine on Monday, as I mentioned.
After I placed the call and started packing up, I knew that something was wrong. I put The Boy on our bed to hang out and he was just...lying there. He wasn't asleep. He seemed tired, which would cause him to be less active, but he was just so complacent. That's the word for it, and it's an odd mannerism coming from this child who is SO opinionated. He didn't complain about the fact that I'd walk in and out of the room or that I didn't stop to play with him. He didn't get up and crawl around on the bed. He didn't even play with the TiVo remote that I had left on the bed. He just lay there for a good 20 minutes doing nothing.
I got a major headache last night and I was kicking myself for not just taking a Tylenol before we left the house. Fortunately I did get some Tylenol and it made me feel better, allowing me to get some sleep. A nice...4 hours or so. Now I'm awake and, fortunately, the headache is gone for now. I'm speculating that it was something I ate. Didn't particularly want to cook anything elaborate because I didn't want to overfill the fridge, so I made rice noodles for The Boy and me and ate some gefilte fish to get some protein. The Boy had leftovers from lunch that he didn't eat--a chicken and veggie dish that I had made en masse on Sunday night.
I'll echo Musical Daddy's sentiment--anyone want to bring us some dinner? It's Yom Kippur starting tonight and I'd love a good pre-fast meal (even though I'm not strictly fasting because I'm "still" breastfeeding The Boy).
Yom Kippur. Ah yes. One of the few Jewish holidays that doesn't fall under the umbrella of "They tried to kill us; we won; let's eat." Because first of all, you don't eat. And secondly, this is, instead, one of the holidays that stems from obligation. Sukkot, the feast of the harvest, starts next week and it also does not fall under that umbrella.
It's the Day of Atonement. And the last thing that I want to do is sit around bellyaching about how miserable my life is just because my kid is sick. Because really, life isn't too bad overall especially considering how much support we get from family and friends even when things are "normal." Furthermore, the fact that my kid is sick doesn't give me license to be a jerk, a slacker, or a whiner. I am hoping that I have been none of these things and have tried to make things right in situations where I feel that I may have wronged someone. Since the deadline is tomorrow, if I have wronged you, please forgive me.
The Boy is still sleeping, and good thing because he needs it, and I think I'm going to tap into my reserve of snacks. Or maybe take a shower...
During the day it was a high temperature but still within the normal range, sort of, in the afternoon it was a little higher, dinnertime it was about 99.1 axillary which, adding a degree because the axillary temperature (underarm) is a degree lower than what the temp would be with the thermometer inserted elsewhere, is about 100.1, and then after 8:00 it was 100.3 axillary.
I didn't rush, necessarily, although I started packing stuff as soon as I had put in the call to the treatment center. I figured that we may as well pack up our stuff right then rather than make a second trip (which Musical Daddy ended up doing anyway, as he left his chorus rehearsal before we had even left the house).
I may have seen this coming although it did seem pretty sudden. One sign: The Boy did a LOT of sleeping today. I wrote that off because he had also had a CT scan done under anesthesia, and I remember the last time Musical Daddy had had surgery he was groggy and sleeping extra for days, so I have that in the back of my mind every time The Boy needs to be sedated (which seems to be pretty often, unfortunately, and will be so until he is old enough to lie still for CT Scans).
He didn't eat much yesterday, although I guess I attributed that to a combination of anesthesia and a holdover from last week's illness. That said, he did seem fine on Monday, as I mentioned.
After I placed the call and started packing up, I knew that something was wrong. I put The Boy on our bed to hang out and he was just...lying there. He wasn't asleep. He seemed tired, which would cause him to be less active, but he was just so complacent. That's the word for it, and it's an odd mannerism coming from this child who is SO opinionated. He didn't complain about the fact that I'd walk in and out of the room or that I didn't stop to play with him. He didn't get up and crawl around on the bed. He didn't even play with the TiVo remote that I had left on the bed. He just lay there for a good 20 minutes doing nothing.
I got a major headache last night and I was kicking myself for not just taking a Tylenol before we left the house. Fortunately I did get some Tylenol and it made me feel better, allowing me to get some sleep. A nice...4 hours or so. Now I'm awake and, fortunately, the headache is gone for now. I'm speculating that it was something I ate. Didn't particularly want to cook anything elaborate because I didn't want to overfill the fridge, so I made rice noodles for The Boy and me and ate some gefilte fish to get some protein. The Boy had leftovers from lunch that he didn't eat--a chicken and veggie dish that I had made en masse on Sunday night.
I'll echo Musical Daddy's sentiment--anyone want to bring us some dinner? It's Yom Kippur starting tonight and I'd love a good pre-fast meal (even though I'm not strictly fasting because I'm "still" breastfeeding The Boy).
Yom Kippur. Ah yes. One of the few Jewish holidays that doesn't fall under the umbrella of "They tried to kill us; we won; let's eat." Because first of all, you don't eat. And secondly, this is, instead, one of the holidays that stems from obligation. Sukkot, the feast of the harvest, starts next week and it also does not fall under that umbrella.
It's the Day of Atonement. And the last thing that I want to do is sit around bellyaching about how miserable my life is just because my kid is sick. Because really, life isn't too bad overall especially considering how much support we get from family and friends even when things are "normal." Furthermore, the fact that my kid is sick doesn't give me license to be a jerk, a slacker, or a whiner. I am hoping that I have been none of these things and have tried to make things right in situations where I feel that I may have wronged someone. Since the deadline is tomorrow, if I have wronged you, please forgive me.
The Boy is still sleeping, and good thing because he needs it, and I think I'm going to tap into my reserve of snacks. Or maybe take a shower...
Monday, October 6, 2008
Workin'
The Boy had a pretty good day today. He wasn't sick, he ate and drank reasonably well with Ms. R., and he was fun and playful when I arrived home. The doctors and nurses indicated that for him to show side effects for longer than a week after chemotherapy is rare.
I've been tossing around the possibility of taking some time off from work to take care of The Boy, since it does seem like I miss a lot of work due to expected or unexpected doctor/hospital visits. I discussed it with my mother and my sister, who say that it isn't necessary. Musical Daddy likes the idea except that it would entail him taking on more outside work, meaning more time away from home, and leaving me with The Boy. And I talked about it with two of my colleagues, who pretty much said that while I ultimately need to do what's best for my family, there isn't a problem covering for me when I do need to be out.
If this is going to be the pattern, that The Boy will have 5 days to a week of sickness after chemo, then here's what we're looking at:
4 more chemo treatments (YAY!). Probably October 23 (Thursday) for DOX/VNC, November 13 (Thursday) for AMD/VNC, December 4 (Thursday) for DOX/VNC, and December 26 (Friday) for AMD/VNC. That's assuming that his counts are good enough to get chemo, which they may not be, but all that does is bump the dates back a bit. Scratching the last chemo because it takes place over Winter Break and we'll be home with him anyway, that makes 3 more weeks that could potentially be like the one that we just had, with the sickness and such. With one, possibly two, treatment center or hospital visits in addition to the ones that will be scheduled.
And of course, the surgery, which may take place next week.
It's a lot, but I guess when I think of it in those terms, it isn't too bad. The only thing that I need to do, that we need to do, is to go with my first instinct. If The Boy seems sick, I should just stay home with him, let him nurse all day, and that's that. Last week's hospital stay possibly could have been avoided had I either stayed home with him or brought him in to the center first thing in the morning. Because, you see, even though we usually have to wait for things at the center, they don't shut us in a room and ignore us, which is what wasted so much time in the ER last week.
Furthermore, I think that I'll go back to pumping if I have to but only during weeks when he is sick or is expected to be so. May not be necessary as I'll build up a stash while The Boy recovers from surgery. Don't forget that since he nurses all night, ounce-for-ounce he's getting as much milk as he would if he were sleeping through the night. He's just mostly schoolday-weaned.
I've been tossing around the possibility of taking some time off from work to take care of The Boy, since it does seem like I miss a lot of work due to expected or unexpected doctor/hospital visits. I discussed it with my mother and my sister, who say that it isn't necessary. Musical Daddy likes the idea except that it would entail him taking on more outside work, meaning more time away from home, and leaving me with The Boy. And I talked about it with two of my colleagues, who pretty much said that while I ultimately need to do what's best for my family, there isn't a problem covering for me when I do need to be out.
If this is going to be the pattern, that The Boy will have 5 days to a week of sickness after chemo, then here's what we're looking at:
4 more chemo treatments (YAY!). Probably October 23 (Thursday) for DOX/VNC, November 13 (Thursday) for AMD/VNC, December 4 (Thursday) for DOX/VNC, and December 26 (Friday) for AMD/VNC. That's assuming that his counts are good enough to get chemo, which they may not be, but all that does is bump the dates back a bit. Scratching the last chemo because it takes place over Winter Break and we'll be home with him anyway, that makes 3 more weeks that could potentially be like the one that we just had, with the sickness and such. With one, possibly two, treatment center or hospital visits in addition to the ones that will be scheduled.
And of course, the surgery, which may take place next week.
It's a lot, but I guess when I think of it in those terms, it isn't too bad. The only thing that I need to do, that we need to do, is to go with my first instinct. If The Boy seems sick, I should just stay home with him, let him nurse all day, and that's that. Last week's hospital stay possibly could have been avoided had I either stayed home with him or brought him in to the center first thing in the morning. Because, you see, even though we usually have to wait for things at the center, they don't shut us in a room and ignore us, which is what wasted so much time in the ER last week.
Furthermore, I think that I'll go back to pumping if I have to but only during weeks when he is sick or is expected to be so. May not be necessary as I'll build up a stash while The Boy recovers from surgery. Don't forget that since he nurses all night, ounce-for-ounce he's getting as much milk as he would if he were sleeping through the night. He's just mostly schoolday-weaned.
Sunday, October 5, 2008
Funny how things change...
My parents are coming to visit this weekend, which we always love. Grandma loves The Boy!
Their kitchen was destroyed in a fire last week, rendering their house pretty much uninhabitable for now. Fortunately no one was hurt and nothing major was destroyed other than the entire kitchen.
I suggested that perhaps they'd want to bring all their laundry and get it done at my house, which my mom said might not be a bad idea. Funny, because usually it's the opposite--children come home with laundry for their parents, not parents coming home with laundry for their children!
I'd be glad to do the wash for them and give them a little break, but I doubt that they'd allow it. At least they have no choice but to let me cook for them.
Their kitchen was destroyed in a fire last week, rendering their house pretty much uninhabitable for now. Fortunately no one was hurt and nothing major was destroyed other than the entire kitchen.
I suggested that perhaps they'd want to bring all their laundry and get it done at my house, which my mom said might not be a bad idea. Funny, because usually it's the opposite--children come home with laundry for their parents, not parents coming home with laundry for their children!
I'd be glad to do the wash for them and give them a little break, but I doubt that they'd allow it. At least they have no choice but to let me cook for them.
Friday, October 3, 2008
Back to life...back to reality
We're home. Everything is "okay" and The Boy is himself again. Except that he's still not eating much. Today at lunchtime, he had carrots and that's pretty much it. I spooned him some broth, and he might have had a noodle and a bite of broccoli. Some carrot did come back up but I think that's because he tried to shove the whole thing in there. It just came up as chewed carrot.
I'm starting to wonder if maybe I would have been better off taking this semester off from work. Hindsight being 20/20 of course. We were not under the impression that things were going to be this time-intensive in terms of The Boy's various treatment-related battles. We just thought that he'd go for treatments or tests once a week and that would be that. I am starting to feel as though I am not giving 100% to my job, and my students and colleagues (and administrators) deserve better than what I'm giving them. As these are extraordinary circumstances, everyone understands. And my mediocre is still better than plenty of "bests" at the risk of tooting my own horn (figuratively speaking). But by the same token, maybe The Boy would be better off with Mommy at home.
On the other hand, our situation is pretty good, as Musical Daddy reminded me. The Boy goes to Ms. R, who lives very close by, and she rarely watches any other kids (just one school-aged girl on occasion for an hour or half-day here and there). Musical Daddy has a job that is close to home and close to Ms. R. We don't live terrifically far from the hospital, either. Musical Daddy's father is retired and has a flexible schedule and lives near the hospital (in the opposite direction from where we live), and his sister-in-law works in another department of the hospital, so she is sometimes able to help. Additionally, Aunt M. offers help and comes in from time to time, and my parents have made the effort to visit about once a month since The Boy was born. My mother stayed with us for two weeks, first to help while Musical Daddy was away, then for The Boy's birthday, and then because we thought that The Boy would be having his surgery.
So there's really no reason for me to leave my job (temporarily) other than a hefty dose of mommy-guilt. See, The Boy doesn't drink much most of the time. He nurses during the night and whenever he is around me. I do my best to send fruits and veggies with a high water content as part of his lunches. He does a better job of drinking water and juice with meals when he's with me as opposed to when he's not. He also does a better job of napping when he's with me or Musical Daddy. He's usually whiny and exhausted when I pick him up in the afternoon. Ms. R. just doesn't have much of a solution (and neither do we) to the problem of The Boy's refusal to sleep in any crib or playpen. Anyhow...if he were sleeping better and nursing during the day, would he be able to avoid the problems that he's had? Probably so.
I'm starting to wonder if maybe I would have been better off taking this semester off from work. Hindsight being 20/20 of course. We were not under the impression that things were going to be this time-intensive in terms of The Boy's various treatment-related battles. We just thought that he'd go for treatments or tests once a week and that would be that. I am starting to feel as though I am not giving 100% to my job, and my students and colleagues (and administrators) deserve better than what I'm giving them. As these are extraordinary circumstances, everyone understands. And my mediocre is still better than plenty of "bests" at the risk of tooting my own horn (figuratively speaking). But by the same token, maybe The Boy would be better off with Mommy at home.
On the other hand, our situation is pretty good, as Musical Daddy reminded me. The Boy goes to Ms. R, who lives very close by, and she rarely watches any other kids (just one school-aged girl on occasion for an hour or half-day here and there). Musical Daddy has a job that is close to home and close to Ms. R. We don't live terrifically far from the hospital, either. Musical Daddy's father is retired and has a flexible schedule and lives near the hospital (in the opposite direction from where we live), and his sister-in-law works in another department of the hospital, so she is sometimes able to help. Additionally, Aunt M. offers help and comes in from time to time, and my parents have made the effort to visit about once a month since The Boy was born. My mother stayed with us for two weeks, first to help while Musical Daddy was away, then for The Boy's birthday, and then because we thought that The Boy would be having his surgery.
So there's really no reason for me to leave my job (temporarily) other than a hefty dose of mommy-guilt. See, The Boy doesn't drink much most of the time. He nurses during the night and whenever he is around me. I do my best to send fruits and veggies with a high water content as part of his lunches. He does a better job of drinking water and juice with meals when he's with me as opposed to when he's not. He also does a better job of napping when he's with me or Musical Daddy. He's usually whiny and exhausted when I pick him up in the afternoon. Ms. R. just doesn't have much of a solution (and neither do we) to the problem of The Boy's refusal to sleep in any crib or playpen. Anyhow...if he were sleeping better and nursing during the day, would he be able to avoid the problems that he's had? Probably so.
In The Hospital
Today (although it's 2 AM the next day, the Tuesday rule says that the day doesn't change until you get your sleep) The Boy was sick in the morning once he got to Ms. R's house. As in, he threw up his lunch. He refused his food, had a bottle from the dwindling freezer stash, and threw up later.
I called the treatment center and we brought him in...only to be sent directly to the ER because of the time of day.
If I wanted to just sit on my behind and be ignored, we could have just stayed home. We checked in at 4; The Boy was finally brought to his room on the pediatric floor at 12AM.
I don't want to get all long-winded about this, mostly because I'm finally starting to regain the tired that I lost from having to talk to the doctors and nurses.
We should be out of here tomorrow. I hope.
I called the treatment center and we brought him in...only to be sent directly to the ER because of the time of day.
If I wanted to just sit on my behind and be ignored, we could have just stayed home. We checked in at 4; The Boy was finally brought to his room on the pediatric floor at 12AM.
I don't want to get all long-winded about this, mostly because I'm finally starting to regain the tired that I lost from having to talk to the doctors and nurses.
We should be out of here tomorrow. I hope.
Wednesday, October 1, 2008
History Lesson
From my Myspace Blog, dated September 22, 2007:
Over the past few days, The Boy had not been keeping his food down. And we're not just talking standard baby spit-up. At the risk of being graphic, if it comes up looking like milk, then it's still within the realm of spit-up even if it's coming out in larger volumes. If it looks like it's been in there for a little while...then we have problems.
After the third time in the span of 18 hours of this happening--because it did happen a few times in isolation last week--I called the doctor's office and they wanted to see him. Supposedly, he was down two ounces from last week, where he was a pound over birth weight at 2 weeks old. He was screaming his little head off and squirming, because he was hungry, and I ended up feeding him while the doctor examined him because nothing else would calm him down. That was pretty exciting.
The other doctor came in and talked with me, saying that he might have a condition called pyloric stenosis (or however it is spelled). If you haven't heard of it, you have now. I'll explain it as well as I understood it. There's a muscle in there, in the esophagus, that lets the food go down and helps it on its way. If it doesn't let food in, the food comes back up. He thought that it was this condition because he had lost a bit of weight, and the throwing up...this condition is most often seen in firstborn white males. So he sent us to the emergency room for an ultrasound of The Boy's abdomen and some bloodwork.
I called my mother and she told me that my cousin--a firstborn white male--had it. It requires surgery.
Hours later, we learned that The Boy did not have this condition and wouldn't require this surgery. He was so good at the hospital and only got upset at having blood drawn and making a little robo-hand to hold an IV port in place, and the ultrasound...then later on when we were waiting for results and he was hungry but I couldn't feed him until the results came back.
I spoke with the doctor yesterday morning (this morning according to the Tuesday rule, because I haven't had a full night's sleep yet) and he said that everything came back normal, the weight was still a concern but it was possible that the scale was wrong at the 2 week check. Frakking wonderful...since I'm nursing exclusively there's not really a good way to tell how much The Boy is getting at a feeding, so the doctor said he wanted me to pump and feed him bottles every 3 hours. He first asked about formula supplementation and I told him I'd rather not, and that I didn't think I had a milk supply problem. So he initially recommended 2 ounces per feeding, saying I could go up to 3 if he would take 3 ounces. I was a little nervous that he wouldn't take a bottle from me when I've got the real thing but that worked out fine.
I think I discovered the problem. I fed The Boy a 2 ounce serving of previously frozen breastmilk. Then, while he slept, I pumped for about 10-12 minutes. I have a fancy electric dual breast pump, because I'll be back at work soon and will continue to give The Boy only breastmilk. Anyhow, after 10 minutes I had about 8 ounces of milk. As I said, I don't have a supply problem. Thing is, milk production is largely guided by what the baby wants to eat. I'm very good at producing milk apparently, and he just kept drinking it because it was there, not realizing that he was eating way too much to handle. For subsequent pumpings, I stayed hooked up for 5-7 minutes and got 4 ounces.
It's been a pretty difficult process, to tell the truth. The great thing about nursing is that the food is always there for the baby. There's not any need to heat up the bottles or measure the milk/formula, nor wash anything in the sink, and bottles create more burps than breastmilk. No way would I ever feed The Boy formula, just because the bottle feeding is such a pain.
The Boy has been happy probably 2/3 of the time today. He's happy because he's eating and it's actually staying in him because it isn't too much. However, he seems to be hungry even after having 3 ounces of milk. I know that 4 ounces would be an acceptable feeding for a kid his age, but I'd like to just stick to what the doctor said. And, I'd like to get him a little more accustomed to this feeding size. Breastmilk does digest quickly though, much more so than formula, so he's hungry faster.
He had a bottle at 11AM, 2PM, 5PM and 8PM. At 10 or so, I took The Boy into my room to hang out and snuggle because he was fussy. We fell asleep and didn't wake up for the 11PM feeding. It was almost midnight. I pumped out the feeding for next time and got a bottle. I tried waking him, and he ate a little, but he really wasn't interested. The doctor had said to wake The Boy to eat every 3 hours...he normally doesn't eat that way. He will often sleep longer before a feeding, usually 4 hours or a little more. Thankfully, that happens a lot at night, giving us one later evening feeding, one 2AM or so, and one early in the morning. We're not at all accustomed to waking him up to eat. My grandfather said that he had a mutual non-aggression pact with the children--they don't bother him and he doesn't bother them. That's the way it has gone with feedings for The Boy--he eats when he wants to. He's on a pretty good schedule.
But I hate this bottle thing! I guess on the plus side, I can give my poor boobies a break for 2 days. And I guess it's good to know that he's taking bottles because he'll have to take 2 or 3 from Musical Daddy every day. I'm just hoping that when he goes back to feeding normally, there won't be any problems. And it's hard as anything to pump the feeding AND feed The Boy the bottle. Normally, if I'm actually there, I'm feeding him, and if I'm pumping, it's because I'm away from him.
Fortunately, we only have to do this nonsense through Monday morning.
Being a nursing mom is exhausting! It was so nice before this started happening...now we've got a little snag but we're fine...and someone might want to eat again.
Over the past few days, The Boy had not been keeping his food down. And we're not just talking standard baby spit-up. At the risk of being graphic, if it comes up looking like milk, then it's still within the realm of spit-up even if it's coming out in larger volumes. If it looks like it's been in there for a little while...then we have problems.
After the third time in the span of 18 hours of this happening--because it did happen a few times in isolation last week--I called the doctor's office and they wanted to see him. Supposedly, he was down two ounces from last week, where he was a pound over birth weight at 2 weeks old. He was screaming his little head off and squirming, because he was hungry, and I ended up feeding him while the doctor examined him because nothing else would calm him down. That was pretty exciting.
The other doctor came in and talked with me, saying that he might have a condition called pyloric stenosis (or however it is spelled). If you haven't heard of it, you have now. I'll explain it as well as I understood it. There's a muscle in there, in the esophagus, that lets the food go down and helps it on its way. If it doesn't let food in, the food comes back up. He thought that it was this condition because he had lost a bit of weight, and the throwing up...this condition is most often seen in firstborn white males. So he sent us to the emergency room for an ultrasound of The Boy's abdomen and some bloodwork.
I called my mother and she told me that my cousin--a firstborn white male--had it. It requires surgery.
Hours later, we learned that The Boy did not have this condition and wouldn't require this surgery. He was so good at the hospital and only got upset at having blood drawn and making a little robo-hand to hold an IV port in place, and the ultrasound...then later on when we were waiting for results and he was hungry but I couldn't feed him until the results came back.
I spoke with the doctor yesterday morning (this morning according to the Tuesday rule, because I haven't had a full night's sleep yet) and he said that everything came back normal, the weight was still a concern but it was possible that the scale was wrong at the 2 week check. Frakking wonderful...since I'm nursing exclusively there's not really a good way to tell how much The Boy is getting at a feeding, so the doctor said he wanted me to pump and feed him bottles every 3 hours. He first asked about formula supplementation and I told him I'd rather not, and that I didn't think I had a milk supply problem. So he initially recommended 2 ounces per feeding, saying I could go up to 3 if he would take 3 ounces. I was a little nervous that he wouldn't take a bottle from me when I've got the real thing but that worked out fine.
I think I discovered the problem. I fed The Boy a 2 ounce serving of previously frozen breastmilk. Then, while he slept, I pumped for about 10-12 minutes. I have a fancy electric dual breast pump, because I'll be back at work soon and will continue to give The Boy only breastmilk. Anyhow, after 10 minutes I had about 8 ounces of milk. As I said, I don't have a supply problem. Thing is, milk production is largely guided by what the baby wants to eat. I'm very good at producing milk apparently, and he just kept drinking it because it was there, not realizing that he was eating way too much to handle. For subsequent pumpings, I stayed hooked up for 5-7 minutes and got 4 ounces.
It's been a pretty difficult process, to tell the truth. The great thing about nursing is that the food is always there for the baby. There's not any need to heat up the bottles or measure the milk/formula, nor wash anything in the sink, and bottles create more burps than breastmilk. No way would I ever feed The Boy formula, just because the bottle feeding is such a pain.
The Boy has been happy probably 2/3 of the time today. He's happy because he's eating and it's actually staying in him because it isn't too much. However, he seems to be hungry even after having 3 ounces of milk. I know that 4 ounces would be an acceptable feeding for a kid his age, but I'd like to just stick to what the doctor said. And, I'd like to get him a little more accustomed to this feeding size. Breastmilk does digest quickly though, much more so than formula, so he's hungry faster.
He had a bottle at 11AM, 2PM, 5PM and 8PM. At 10 or so, I took The Boy into my room to hang out and snuggle because he was fussy. We fell asleep and didn't wake up for the 11PM feeding. It was almost midnight. I pumped out the feeding for next time and got a bottle. I tried waking him, and he ate a little, but he really wasn't interested. The doctor had said to wake The Boy to eat every 3 hours...he normally doesn't eat that way. He will often sleep longer before a feeding, usually 4 hours or a little more. Thankfully, that happens a lot at night, giving us one later evening feeding, one 2AM or so, and one early in the morning. We're not at all accustomed to waking him up to eat. My grandfather said that he had a mutual non-aggression pact with the children--they don't bother him and he doesn't bother them. That's the way it has gone with feedings for The Boy--he eats when he wants to. He's on a pretty good schedule.
But I hate this bottle thing! I guess on the plus side, I can give my poor boobies a break for 2 days. And I guess it's good to know that he's taking bottles because he'll have to take 2 or 3 from Musical Daddy every day. I'm just hoping that when he goes back to feeding normally, there won't be any problems. And it's hard as anything to pump the feeding AND feed The Boy the bottle. Normally, if I'm actually there, I'm feeding him, and if I'm pumping, it's because I'm away from him.
Fortunately, we only have to do this nonsense through Monday morning.
Being a nursing mom is exhausting! It was so nice before this started happening...now we've got a little snag but we're fine...and someone might want to eat again.
Happy New Year
Although I am not very frum, apparently my blog is because it has taken a break for Rosh Hashanah. For those who are curious, frum means, roughly, " very religiously observant."
Anyhow, yesterday I attended services at my shul. There is a new student cantor who did a wonderful job (we have only student cantors in our congregation, and as far as I can tell, we get a new one every three years). I planned to bring The Boy this morning, but he had other ideas. Or rather, as much as he loves shul, his body was rebelling against chemo and whatever other nasties he had picked up from his schoolteacher parents.
This morning was a repeat of the events of a few weeks ago. I put him in his high chair, all set to serve him eggs and juice, and he started coughing and hacking. He brought up clear fluid which ended up in his bib pocket (making cleanup pretty easy), and he wouldn't even touch his food after that.
He also had a fever, up to 98.9 under the arm (which is about 99.9), but apparently it wasn't anything about which the doctor was concerned. I should mention that he received his chemo yesterday despite not having quite a high enough Absolute Neutrophil Count. I wish that, as long as he was going to receive it without having the numbers, that they had done it on Thursday of last week, because his numbers were actually better then. Anyhow, his temperature fell over the course of the day to about 98.4 under the arm but was back up to 98.8 as he was sleeping.
By the way, he did sleep a lot today, which is pretty normal for the day right after chemo.
He ate very little at lunchtime but had a strong enough stomach for dinner, thank goodness. And, thank goodness even more, he nursed every few hours.
Even with all of this, though, it's been a wonderful year, from one Rosh Hashanah to the next. I missed Yom Kippur last year, due to a separate issue that, I don't think, was ever related to this one. I'll post that story right after this one. But other than that...I had a great year at work last year and a wonderful year watching The Boy grow and turn into a little man.
As for myself, I have a few things to work on, as we all do. I'd like to do a little bit better about not pre-judging people before I know what's going on with them. Since most of the time, it's none of my business anyway. That said, if you ask for my advice, I'm always happy to share.
Anyhow, yesterday I attended services at my shul. There is a new student cantor who did a wonderful job (we have only student cantors in our congregation, and as far as I can tell, we get a new one every three years). I planned to bring The Boy this morning, but he had other ideas. Or rather, as much as he loves shul, his body was rebelling against chemo and whatever other nasties he had picked up from his schoolteacher parents.
This morning was a repeat of the events of a few weeks ago. I put him in his high chair, all set to serve him eggs and juice, and he started coughing and hacking. He brought up clear fluid which ended up in his bib pocket (making cleanup pretty easy), and he wouldn't even touch his food after that.
He also had a fever, up to 98.9 under the arm (which is about 99.9), but apparently it wasn't anything about which the doctor was concerned. I should mention that he received his chemo yesterday despite not having quite a high enough Absolute Neutrophil Count. I wish that, as long as he was going to receive it without having the numbers, that they had done it on Thursday of last week, because his numbers were actually better then. Anyhow, his temperature fell over the course of the day to about 98.4 under the arm but was back up to 98.8 as he was sleeping.
By the way, he did sleep a lot today, which is pretty normal for the day right after chemo.
He ate very little at lunchtime but had a strong enough stomach for dinner, thank goodness. And, thank goodness even more, he nursed every few hours.
Even with all of this, though, it's been a wonderful year, from one Rosh Hashanah to the next. I missed Yom Kippur last year, due to a separate issue that, I don't think, was ever related to this one. I'll post that story right after this one. But other than that...I had a great year at work last year and a wonderful year watching The Boy grow and turn into a little man.
As for myself, I have a few things to work on, as we all do. I'd like to do a little bit better about not pre-judging people before I know what's going on with them. Since most of the time, it's none of my business anyway. That said, if you ask for my advice, I'm always happy to share.
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