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.
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