No chemo. At least not yet. They want to do radiation after all. The tumor board didn't discuss it, but the doctor who is in charge of the bilateral Wilms Tumor study did recommend radiation. When, you might ask?
Sometime between the moment we walked into the outpatient center for counts and the time that the doctor examined The Boy.
The nurse asked if we'd like to do the finger stick for counts or if she should access the port. I said that she should go ahead and access the port, since (I thought) we were going right upstairs and that was one less thing for them to worry about up there.
Then we played for awhile. Grandpa was there (Musical Daddy's daddy), and we had some fun. Then the doctor said to come in, and maybe Grandpa would like to hear what she had to say as well. Of course I panicked, thinking that the counts were bad even though he had the extra recovery time, or even something worse. No, just a report that she had JUST received this message and that we were doing a radiation consultation on Monday.
Grandpa says that radiation is a cakewalk compared to chemo. It is a little trickier with a little guy, since he'll have to be sedated for it, but other parents of kids who have had radiation agree that radiation is easier to deal with.
The downside? Radiation can have side effects or late effects just like chemo. Most notably, radiation can affect the kidney. Since he has not even a full kidney, that is a concern; they decided to go ahead and radiate because he had enough to handle it (we hope). Also worth mentioning is that the doctor said his growth could be affected in the radiated area. He may end up being a little shorter in the trunk (his "sitting height") than he otherwise would have been. This certainly concerns me. However, Musical Daddy has shorter legs than he otherwise would have had because of his asthma medication as a kid. My father has a shorter trunk because of scoliosis surgery. Musical Daddy has a cousin with the same issue from the same surgery, as I learned today from his father, and she is tall and very athletic. Other children who have been through more of this sort of treatment have come out on the other end and are fine.
I'm not any more scared of radiation than I am of the chemo that he is getting. It's all nasty stuff that we are having done to him in the hopes that other nasty stuff, namely the cancer, doesn't come back.
It's still scary, though. He has cancer. Cancer can kill people. This morning a little girl in Norway passed away, having lost her battle with diffuse anaplastic (a very unfavorable histology) Wilms Tumor. She was 4.
But we keep on keepin' on for The Boy, knowing that every time they treat him, it's because they think that the treatment will work and make him better.
Friday, February 27, 2009
Thursday, February 26, 2009
Chemo starting tomorrow...but...
They didn't even get to discuss The Boy's case at the tumor review. I would have loved for them to say right away that they didn't discuss it, and for our doctors to then say they're going on with the next phase of chemo in the meantime, right away.
Which is what they're doing except instead of having a day to prepare and get Grandma set to come...we just have to go in right away tomorrow morning and that's that.
They don't feel comfortable about waiting an additional week without any treatment, which makes sense.
This is the ickier chemo--5 days of treatment, and one of the drugs is really nasty. Not that the other isn't.
Which is what they're doing except instead of having a day to prepare and get Grandma set to come...we just have to go in right away tomorrow morning and that's that.
They don't feel comfortable about waiting an additional week without any treatment, which makes sense.
This is the ickier chemo--5 days of treatment, and one of the drugs is really nasty. Not that the other isn't.
Tuesday, February 24, 2009
The Great Expectation
21.5 weeks of being pregnant (less than that in terms of days that I have had time to think about being pregnant) and I'm already looking forward to having another tiny person in the house I"YH. So many things that we get to go through again, most of which were really quite lovely.
I didn't have this blog the first time around although I did have a blog on MySpace (which I never use anymore). It is certainly helpful, writing about our experiences, because some things just go by in such a blur.
Memories of labor: the old sentiment was that women tend to forget about labor being so dreadful so that they'll think about having kids again. I didn't find it to be too dreadful, and yes, I do remember it. It was a well-managed induction without pain meds and a delivery that was so good that the doctor still complimented me on it the last time she saw me. You better believe I remember that. My husband and my sister-in-law can attest to the fact that I was in a perfectly fine state for most of the time, up until transition labor hit.
I recall around 12 noon, 3 hours before The Boy was born, being told that I needed to change positions. I was sitting up, or reclining somewhat, in the bed, and they wanted me to be on my side instead, and The Boy's heartbeat was dropping with contractions. Which I knew was crap, because The Boy kept kicking the monitors, so how in the world could they measure anything correctly? But I didn't WANT to be on my side. What I actually wanted was to still be allowed out of the bed, but once my water was broken, I had to stay there. Which also meant having to pee A LOT in a basin, around the same time. Being on IV fluids does that to you.
I remember insisting on being checked, during transition, or after I guess because I knew that this boy was coming out soon and felt the urge to push, and having the nurse tell me that no, I couldn't possibly be ready yet. I remember her name but will not mention it here. Nevertheless, if I get her again, I'll either tell her to frakking listen to me or just request a different nurse.
The induction of labor meant that there was not the surprise of "oh my goodness, the baby is coming soon!" or the possible mess of a rupture of membranes at an inconvenient time. It also meant that there was no laboring at home. Perhaps this time around, labor will actually start. Of course, with my luck I won't even be able to tell when it is time to head to the hospital and I'll end up having the baby in the house. My husband is probably freaking out reading that last sentence, although much less so than he would have had I not already capably delivered The Boy.
Memories of the first few weeks: That's where the amnesia really happens, I think. I was in such a fog from recovery and getting used to breastfeeding and diaper stuff, and the fact that babies can't tell time and have no interest in sleeping for longer than a few hours at a time. I had some frustration at first with the feeding thing, mostly because The Boy had a puking problem. I now feel pretty certain that it was a foremilk/hindmilk imbalance.
If you don't know what this is, it is pretty important that you become aware. Classic symptoms are frothy greenish poo that happens frequently (one of those types of poo happening occasionally isn't a big deal) and a baby that pukes a lot but doesn't seem sick. In order to combat this problem, it is very important that the baby be allowed to "finish" nursing on one side and gets to the hindmilk. After finishing, he may only want to nurse a bit more on the other side but it should be offered. Failing to get enough hindmilk into the baby means that he'll want more milk for more calories and just take in too much. I remember thinking, my boobies are still sore--why feed him now when he's just going to bring it back up again? Knowing that my mother's advice and the nurses' advice on breastfeeding was mostly good, but that some of it was a little off-base, I feel that much better going into the process with Baby Bear.
I don't expect to buy a lot of stuff for Baby Bear. We have a crib. We'll need a bassinet because I'd rather have Baby Bear in our room in the bassinet for as long as possible, in order to make nighttime stuff easier. We don't need much in the way of clothing or toys. We'll add to the diaper stash with a bunch of size small Bummis Super Whisper Wraps and prefolds, and cycle in some new bumGenius OneSize diapers, which will fit both babies. Supposedly they don't fit newborns right away depending on size, but with The Boy having been pretty big and Musical Daddy and I both being tall people, I'd imagine that it won't be long. We may use up the stash of Pampers from the hospital stay and then put Baby Bear in cloth. I can't imagine that he'll escape having a sensitive bum like the rest of us, and anyhow, having two children in cloth diapers saves a crapload of money. Pun intended.
Not sure where this little pregnant-lady ramble has gone, but if you've made it this far, thanks for humoring me.
I didn't have this blog the first time around although I did have a blog on MySpace (which I never use anymore). It is certainly helpful, writing about our experiences, because some things just go by in such a blur.
Memories of labor: the old sentiment was that women tend to forget about labor being so dreadful so that they'll think about having kids again. I didn't find it to be too dreadful, and yes, I do remember it. It was a well-managed induction without pain meds and a delivery that was so good that the doctor still complimented me on it the last time she saw me. You better believe I remember that. My husband and my sister-in-law can attest to the fact that I was in a perfectly fine state for most of the time, up until transition labor hit.
I recall around 12 noon, 3 hours before The Boy was born, being told that I needed to change positions. I was sitting up, or reclining somewhat, in the bed, and they wanted me to be on my side instead, and The Boy's heartbeat was dropping with contractions. Which I knew was crap, because The Boy kept kicking the monitors, so how in the world could they measure anything correctly? But I didn't WANT to be on my side. What I actually wanted was to still be allowed out of the bed, but once my water was broken, I had to stay there. Which also meant having to pee A LOT in a basin, around the same time. Being on IV fluids does that to you.
I remember insisting on being checked, during transition, or after I guess because I knew that this boy was coming out soon and felt the urge to push, and having the nurse tell me that no, I couldn't possibly be ready yet. I remember her name but will not mention it here. Nevertheless, if I get her again, I'll either tell her to frakking listen to me or just request a different nurse.
The induction of labor meant that there was not the surprise of "oh my goodness, the baby is coming soon!" or the possible mess of a rupture of membranes at an inconvenient time. It also meant that there was no laboring at home. Perhaps this time around, labor will actually start. Of course, with my luck I won't even be able to tell when it is time to head to the hospital and I'll end up having the baby in the house. My husband is probably freaking out reading that last sentence, although much less so than he would have had I not already capably delivered The Boy.
Memories of the first few weeks: That's where the amnesia really happens, I think. I was in such a fog from recovery and getting used to breastfeeding and diaper stuff, and the fact that babies can't tell time and have no interest in sleeping for longer than a few hours at a time. I had some frustration at first with the feeding thing, mostly because The Boy had a puking problem. I now feel pretty certain that it was a foremilk/hindmilk imbalance.
If you don't know what this is, it is pretty important that you become aware. Classic symptoms are frothy greenish poo that happens frequently (one of those types of poo happening occasionally isn't a big deal) and a baby that pukes a lot but doesn't seem sick. In order to combat this problem, it is very important that the baby be allowed to "finish" nursing on one side and gets to the hindmilk. After finishing, he may only want to nurse a bit more on the other side but it should be offered. Failing to get enough hindmilk into the baby means that he'll want more milk for more calories and just take in too much. I remember thinking, my boobies are still sore--why feed him now when he's just going to bring it back up again? Knowing that my mother's advice and the nurses' advice on breastfeeding was mostly good, but that some of it was a little off-base, I feel that much better going into the process with Baby Bear.
I don't expect to buy a lot of stuff for Baby Bear. We have a crib. We'll need a bassinet because I'd rather have Baby Bear in our room in the bassinet for as long as possible, in order to make nighttime stuff easier. We don't need much in the way of clothing or toys. We'll add to the diaper stash with a bunch of size small Bummis Super Whisper Wraps and prefolds, and cycle in some new bumGenius OneSize diapers, which will fit both babies. Supposedly they don't fit newborns right away depending on size, but with The Boy having been pretty big and Musical Daddy and I both being tall people, I'd imagine that it won't be long. We may use up the stash of Pampers from the hospital stay and then put Baby Bear in cloth. I can't imagine that he'll escape having a sensitive bum like the rest of us, and anyhow, having two children in cloth diapers saves a crapload of money. Pun intended.
Not sure where this little pregnant-lady ramble has gone, but if you've made it this far, thanks for humoring me.
Monday, February 23, 2009
Potato (A Toddler Eating Habit Discussion)
Let me preface this by saying The Boy's eating habits are pretty good for any child his age, especially considering his particular issues. Therefore, this is in no way a complaint session regarding The Boy's dining practice but rather an observation of what is, I am certain, an ordinary practice among toddlers.
Potatoes. The Boy enjoys them baked. He will eat them with or without ketchup. At breakfast when we go to the diner, he likes hash browns with ketchup. At our diner, the hash browns are just pan-fried potatoes. He doesn't eat much of them, because he is far more interested in eggs and pancakes. However, he is less enthusiastic about the shoestring hash browns at IHOP. He hasn't eaten french fries in at least a month, and he no longer has any interest in potato chips, if you can imagine that. Despite the fact that his oncologist said that if all he wants to eat is potato chips, let him eat chips all day, rather than eating nothing. He used to flip for chips and dip (not intentional, the rhyming, but it works) and now has no interest. He also doesn't like garlic mashed potatoes although I guess that isn't too much of a shock.
I wonder why he is no longer interested in chips and dip. Unfortunately for me, I still love them. Tastes change rather quickly with toddlers, probably more so with him. Also, when he finishes a round of chemo, we usually stay away from chips and gear his diet toward foods that are easier on his stomach. By the time he would have otherwise been over his post-chemo stomach, he then had a bit of an illness. Then we were sick and couldn't even look at a potato chip. Once he was clear to eat them, he didn't want them.
Disappointing, because it was a word that he would say consistently. Asking for "ips" once a day or so.
He isn't great at eating vegetables all the time. I guess he gets enough of them that I'm not worried, and for some reason he LOVES his vitamins.
Tomorrow's excitement is free pancakes at IHOP in honor of Mardi Gras. Can't wait!!!
Potatoes. The Boy enjoys them baked. He will eat them with or without ketchup. At breakfast when we go to the diner, he likes hash browns with ketchup. At our diner, the hash browns are just pan-fried potatoes. He doesn't eat much of them, because he is far more interested in eggs and pancakes. However, he is less enthusiastic about the shoestring hash browns at IHOP. He hasn't eaten french fries in at least a month, and he no longer has any interest in potato chips, if you can imagine that. Despite the fact that his oncologist said that if all he wants to eat is potato chips, let him eat chips all day, rather than eating nothing. He used to flip for chips and dip (not intentional, the rhyming, but it works) and now has no interest. He also doesn't like garlic mashed potatoes although I guess that isn't too much of a shock.
I wonder why he is no longer interested in chips and dip. Unfortunately for me, I still love them. Tastes change rather quickly with toddlers, probably more so with him. Also, when he finishes a round of chemo, we usually stay away from chips and gear his diet toward foods that are easier on his stomach. By the time he would have otherwise been over his post-chemo stomach, he then had a bit of an illness. Then we were sick and couldn't even look at a potato chip. Once he was clear to eat them, he didn't want them.
Disappointing, because it was a word that he would say consistently. Asking for "ips" once a day or so.
He isn't great at eating vegetables all the time. I guess he gets enough of them that I'm not worried, and for some reason he LOVES his vitamins.
Tomorrow's excitement is free pancakes at IHOP in honor of Mardi Gras. Can't wait!!!
Sunday, February 22, 2009
Weekend of Normal Things.
This is my 200th post!! Hooray for this blog!
Not bad considering that I only started this blog in July. It had to have been, because it was after The Boy's diagnosis and at the time, I was referring everyone to The Musical Daddy blog for all updates and info.
Last night, while reading Facebook updates on my iPod, I got a message from one of my work friends (who was a recent addition to my Facebook friend list) that another friend from work had finally succumbed to cancer, which she had been battling for awhile. I honestly had no idea that she was in such a state, as I had seen her at the end of the year. I remember telling her that I was pregnant. I remember all of the kind words and support that she gave me with regards to The Boy and his treatment, reiterating what her oncologist had said when she reported about my little guy. Something along the lines of "Oh, it's just Wilms Tumor." That was before the relapse but even so.
Cancer sucks.
Wilms Tumor is a pretty "easy" cancer in that it seems like so many people do come out on the other end of it and they're just fine. Statistically, the success with treatment is very very likely. Yet, in spite of the good odds, there have to be people who draw the short straw.
Again, cancer sucks.
We did, however, take advantage of our extra freedom this weekend. Friday night, we went out to Famous Dave's BBQ. The Boy enjoyed roasted chicken and corn on the cob--two of his favorite things ever. Saturday morning was our typical outing for breakfast at the diner (which we do about once a week provided that The Boy is feeling well). We putzed around the house for most of the day, which is fine.
Today, The Boy wasn't having any of this "go back to bed so Mommy can sleep" so we were actually out of bed at 7:30. We had breakfast all together, sort of. Hopping up and down to take care of various things, anyway. Doesn't matter to The Boy, who takes his breakfast of yogurt and bite-sized shredded wheat, and an egg today as well, VERY seriously.
We had a shower, played for a bit, and then went grocery shopping. By the time we got home, it was lunchtime. I got some Dr. Praeger's Fishies, which The Boy didn't seem to want to try. I have a feeling that he will like them, so I'll continue to offer them. And if he doesn't like them, then that's more for me. He does enjoy the whole-grain tortillas with cheddar cheese. He could eat those all day.
The Boy napped for about an hour and a half, and then Daddy got home. Webchat with the family out in California (brother-in-law and his family; not just any random family). Plans with friends were cancelled. No big--we went shopping at Big Lots (with a coupon, of course!) and then to Arirang for a wonderful Hibachi dinner.
Hibachi is actually quite a good time for a little guy like The Boy. Especially because they had rice available pretty much right away. Even so, the soup and salad come quickly, and food is gradually cooked and served. The show that is put on by the cook is always fun, and The Boy was sufficiently entranced. Furthermore, everytime someone announces a birthday, these rainbow disco lights went on and some birthday song played, which was also amusing for The Boy. With him, what could be wrong with chicken, steak, rice, a few veggies, and oddly enough, a lemon wedge? He did suck on the lemon a few times (weird...), but mostly he was interested in putting it in the glass and taking it out again.
Since The Boy had only had 1 nap today, and not an exceptionally long one, he was really ready for bed by the time we got home, and didn't really protest much with regards to the whole bedtime thing.
Rather different from the previous two nights, where his late afternoon nap with Daddy ended up being WAY too long, and as a result, he was not interested in bed at ALL until much later. Last night he was also throwing fitfitfitfitfits, possibly related to some new teeth--the back molars already!!!
I love it that the boys nap together. I will relax with them on occasion, but just as often I'll get out of bed and enjoy the alone time. More precisely, I use the time to cook dinner.
It's probably not the best thing for The Boy, to have a nap so late in the day. Rather, it isn't the best thing for him if we want him to go to bed at 8 or 8:30, which he should be doing. Many children at his age are down to 1 nap a day. The Boy is pretty flexible about his napping. Sometimes he'll do one nap. Sometimes he'll do two. He is fine with an earlier nap and/or a later one. As long as he gets a nap somewhere in there, we can be assured of a happy boy.
So it was a good weekend. We have until Wednesday night, at least, until anything happens in the medical department. Thus, a few days left of Boy with good blood counts and some semblance of an immune system. Tuesday is free pancakes at IHOP. They'll be shocked at the number of pancakes this boy can put away.
Not bad considering that I only started this blog in July. It had to have been, because it was after The Boy's diagnosis and at the time, I was referring everyone to The Musical Daddy blog for all updates and info.
Last night, while reading Facebook updates on my iPod, I got a message from one of my work friends (who was a recent addition to my Facebook friend list) that another friend from work had finally succumbed to cancer, which she had been battling for awhile. I honestly had no idea that she was in such a state, as I had seen her at the end of the year. I remember telling her that I was pregnant. I remember all of the kind words and support that she gave me with regards to The Boy and his treatment, reiterating what her oncologist had said when she reported about my little guy. Something along the lines of "Oh, it's just Wilms Tumor." That was before the relapse but even so.
Cancer sucks.
Wilms Tumor is a pretty "easy" cancer in that it seems like so many people do come out on the other end of it and they're just fine. Statistically, the success with treatment is very very likely. Yet, in spite of the good odds, there have to be people who draw the short straw.
Again, cancer sucks.
We did, however, take advantage of our extra freedom this weekend. Friday night, we went out to Famous Dave's BBQ. The Boy enjoyed roasted chicken and corn on the cob--two of his favorite things ever. Saturday morning was our typical outing for breakfast at the diner (which we do about once a week provided that The Boy is feeling well). We putzed around the house for most of the day, which is fine.
Today, The Boy wasn't having any of this "go back to bed so Mommy can sleep" so we were actually out of bed at 7:30. We had breakfast all together, sort of. Hopping up and down to take care of various things, anyway. Doesn't matter to The Boy, who takes his breakfast of yogurt and bite-sized shredded wheat, and an egg today as well, VERY seriously.
We had a shower, played for a bit, and then went grocery shopping. By the time we got home, it was lunchtime. I got some Dr. Praeger's Fishies, which The Boy didn't seem to want to try. I have a feeling that he will like them, so I'll continue to offer them. And if he doesn't like them, then that's more for me. He does enjoy the whole-grain tortillas with cheddar cheese. He could eat those all day.
The Boy napped for about an hour and a half, and then Daddy got home. Webchat with the family out in California (brother-in-law and his family; not just any random family). Plans with friends were cancelled. No big--we went shopping at Big Lots (with a coupon, of course!) and then to Arirang for a wonderful Hibachi dinner.
Hibachi is actually quite a good time for a little guy like The Boy. Especially because they had rice available pretty much right away. Even so, the soup and salad come quickly, and food is gradually cooked and served. The show that is put on by the cook is always fun, and The Boy was sufficiently entranced. Furthermore, everytime someone announces a birthday, these rainbow disco lights went on and some birthday song played, which was also amusing for The Boy. With him, what could be wrong with chicken, steak, rice, a few veggies, and oddly enough, a lemon wedge? He did suck on the lemon a few times (weird...), but mostly he was interested in putting it in the glass and taking it out again.
Since The Boy had only had 1 nap today, and not an exceptionally long one, he was really ready for bed by the time we got home, and didn't really protest much with regards to the whole bedtime thing.
Rather different from the previous two nights, where his late afternoon nap with Daddy ended up being WAY too long, and as a result, he was not interested in bed at ALL until much later. Last night he was also throwing fitfitfitfitfits, possibly related to some new teeth--the back molars already!!!
I love it that the boys nap together. I will relax with them on occasion, but just as often I'll get out of bed and enjoy the alone time. More precisely, I use the time to cook dinner.
It's probably not the best thing for The Boy, to have a nap so late in the day. Rather, it isn't the best thing for him if we want him to go to bed at 8 or 8:30, which he should be doing. Many children at his age are down to 1 nap a day. The Boy is pretty flexible about his napping. Sometimes he'll do one nap. Sometimes he'll do two. He is fine with an earlier nap and/or a later one. As long as he gets a nap somewhere in there, we can be assured of a happy boy.
So it was a good weekend. We have until Wednesday night, at least, until anything happens in the medical department. Thus, a few days left of Boy with good blood counts and some semblance of an immune system. Tuesday is free pancakes at IHOP. They'll be shocked at the number of pancakes this boy can put away.
Saturday, February 21, 2009
LIttle Bum
The Boy has a skinny bum. Our niece says that it's something of a family trait, as she doesn't have a butt herself, even if she gains weight. But he REALLY has a skinny bum. I think it's gotten a little rounder over the past week since he has been eating so well. Furthermore, we get an extra week to let his bum get rounder.
He wears size 18 month pants and he is almost 18 months old. If he weren't in puffy cloth diapers, those pants wouldn't stay up. He fits in 24 month shirts a bit better; he has a long torso and short legs like Daddy.
Last night we were going to go out for Hibachi. Unfortunately, The Boy and Musical Daddy napped in the afternoon, and their siesta lasted until 7PM. By the time we were out the door and at the restaurant, the wait was just too long.
Instead, we went to Famous Dave's BBQ. Good choice for us. As soon as our plates were given to us and The Boy saw my corn on the cob, that was it--I knew I wasn't seeing a bite of it. He ate most of a chicken thigh and the entire 1/2 ear of corn. I enjoyed my barbecue chicken, corn muffin, garlic mashed potatoes, and The Boy's french fries, which were basically a trade for the corn.
DEEEEElicious.
We may try Hibachi tonight even so.
He wears size 18 month pants and he is almost 18 months old. If he weren't in puffy cloth diapers, those pants wouldn't stay up. He fits in 24 month shirts a bit better; he has a long torso and short legs like Daddy.
Last night we were going to go out for Hibachi. Unfortunately, The Boy and Musical Daddy napped in the afternoon, and their siesta lasted until 7PM. By the time we were out the door and at the restaurant, the wait was just too long.
Instead, we went to Famous Dave's BBQ. Good choice for us. As soon as our plates were given to us and The Boy saw my corn on the cob, that was it--I knew I wasn't seeing a bite of it. He ate most of a chicken thigh and the entire 1/2 ear of corn. I enjoyed my barbecue chicken, corn muffin, garlic mashed potatoes, and The Boy's french fries, which were basically a trade for the corn.
DEEEEElicious.
We may try Hibachi tonight even so.
Thursday, February 19, 2009
No chemo this weekend; tumor review board
The Boy will not be going in for chemo this weekend. He may receive radiation after all. Either way, his case is being reviewed next week on Wednesday.
This is a case of extra time served for good behavior, as my mother put it when she got an extra chemo week as part of her treatment. Not that The Boy's behavior has anything to do with it, but you see where I'm coming from. The Boy has more of the right kidney remaining than they originally thought. They believed that more kidney would be lost as a result of the tumor resection and chemo. In fact, he has 80% of the kidney left. Radiation to a smaller percentage of kidney is out of the question, and radiation is always done with this protocol if the entire kidney remains. Thus, the deliberation.
He still shows no evidence of disease, but that doesn't mean that little tumor cells couldn't be floating around. Chemo can get 'em. Radiation can get 'em too. Radiation does not mean less chemo. We still have 26 rounds of chemo to do, most likely, unless they decide to do something else, which doesn't seem likely.
We also saw the nephrologist today. She said that currently his kidney function is normal. Chemo can sometimes affect this, so he will be monitored. It is possible that he'll be fine for the rest of his life; it is possible that he may have kidney problems when he gets older. Who knows?
The good news? We get almost an entire week of no doctor visits and good counts (assuming that he doesn't pick up anything between now and then) until we hear one way or the other. If no radiation, then he'll do chemo starting next Friday.
I don't really have an opinion as to which option I'd prefer. I say, whatever keeps the tumors away.
This is a case of extra time served for good behavior, as my mother put it when she got an extra chemo week as part of her treatment. Not that The Boy's behavior has anything to do with it, but you see where I'm coming from. The Boy has more of the right kidney remaining than they originally thought. They believed that more kidney would be lost as a result of the tumor resection and chemo. In fact, he has 80% of the kidney left. Radiation to a smaller percentage of kidney is out of the question, and radiation is always done with this protocol if the entire kidney remains. Thus, the deliberation.
He still shows no evidence of disease, but that doesn't mean that little tumor cells couldn't be floating around. Chemo can get 'em. Radiation can get 'em too. Radiation does not mean less chemo. We still have 26 rounds of chemo to do, most likely, unless they decide to do something else, which doesn't seem likely.
We also saw the nephrologist today. She said that currently his kidney function is normal. Chemo can sometimes affect this, so he will be monitored. It is possible that he'll be fine for the rest of his life; it is possible that he may have kidney problems when he gets older. Who knows?
The good news? We get almost an entire week of no doctor visits and good counts (assuming that he doesn't pick up anything between now and then) until we hear one way or the other. If no radiation, then he'll do chemo starting next Friday.
I don't really have an opinion as to which option I'd prefer. I say, whatever keeps the tumors away.
Wednesday, February 18, 2009
Ok
Fever is gone. He seems fine. I have a headache.
You'd think that after a good scan I'd be all happy and jumping up and down but I feel very weighted down, still.
You'd think that after a good scan I'd be all happy and jumping up and down but I feel very weighted down, still.
What does it mean...?
Right now, The Boy has a fever. He is acting otherwise normal, so the people at the center don't want to see him yet, unless it keeps up for awhile. This is annoying because if we wait too long, we end up in the ER instead of in the nice outpatient center.
We are, of course, thrilled that The Boy's scan showed NED. That's a pretty big deal because it means that the treatment is working.
However, he doesn't get time off for good behavior. We don't stop the chemo right away once there is no evidence of disease. It means that we keep going. And we still have the same amount of time left. To be precise, we still have 26, yes, 26, more chemotherapy hospital stays. We still have visits to the outpatient center every week. We are still waiting to hear about radiation. There is still the very real concern about fevers and infections that could mean...anything.
So yes, we're going in the right direction, but we're not off the hook at all.
We are, of course, thrilled that The Boy's scan showed NED. That's a pretty big deal because it means that the treatment is working.
However, he doesn't get time off for good behavior. We don't stop the chemo right away once there is no evidence of disease. It means that we keep going. And we still have the same amount of time left. To be precise, we still have 26, yes, 26, more chemotherapy hospital stays. We still have visits to the outpatient center every week. We are still waiting to hear about radiation. There is still the very real concern about fevers and infections that could mean...anything.
So yes, we're going in the right direction, but we're not off the hook at all.
The magic letters: NED!!!!!!
The Boy's scan shows No Evidence of Disease! Those are the magic words, and the magic letters that we have been itching to hear.
The doctor didn't call right away because she didn't get a chance to see the scan herself. The written report said it but she wanted to see it for herself.
She said, however, that she wanted to make one more call to check about the radiation issue. She had thought that he wouldn't need it, and that with him not even having a complete kidney that it was worth asking about. She called the head of the National Wilms Tumor Study Group to see what he thinks.
When I called and talked to one of the nurses, she said that the report was good and that he would do his chemo starting Friday. Radiation would mean a different start date for the next chemo.
The doctor didn't call right away because she didn't get a chance to see the scan herself. The written report said it but she wanted to see it for herself.
She said, however, that she wanted to make one more call to check about the radiation issue. She had thought that he wouldn't need it, and that with him not even having a complete kidney that it was worth asking about. She called the head of the National Wilms Tumor Study Group to see what he thinks.
When I called and talked to one of the nurses, she said that the report was good and that he would do his chemo starting Friday. Radiation would mean a different start date for the next chemo.
Shopping for Babies
I've got a snuggly boy on my lap while I am waiting to hear from the doctor. I just read Nancy's blog in which she went through the Babies R Us registry list and instructed a friend, and other new moms, about what to register for. We don't do baby showers in the Jewish tradition, so the first time around I used my registry as a shopping list. I did think about what I'd need but we didn't run out and get everything months before The Boy was born.
So, go read Nancy's list. She has 3 kids--2 girls close in age and a baby boy.
This is the actual list:
http://www.toysrus.com/shop/index.jsp?categoryId=2964381
Here's my take.
Toys and accessories for the stroller are fun to have but not necessary. If your child never gets used to having a plastic thing parked in front of him, he doesn't expect it when it isn't there for whatever reason.
Baby Carriers:
We loved the Jeep Kolcraft front-pack carrier. We used it from the time that The Boy was tiny (8 pounds is the lower limit). Sometimes it was helpful in walking him around the house when he was fussy or when we were trying to do things. It is fantastic for sporting events and other places where a stroller or infant seat is a pain. It was always comfortable for both of us to wear. I never tried the Baby Bjorn, but Nancy likes hers.
We also have a NoJo ring sling, which was a hand-me-down. We didn't use it when The Boy was little-tiny. We instead used it when he was old enough to hold his head up. He would sit in it, front-facing, from 3 or 4 months old. He would sit on our hip in the sling until he was almost a year old. Sometimes I used it at the grocery store instead of putting him in the cart. I may try, with Baby Bear, to use it when he is a newborn, now that I know how to use it more easily.
Play Yards/Playpen:
We have a Pack N Play. The Boy never slept in it (much to the babysitter's chagrin, when he was there). When he was younger, he would play in it while Musical Daddy exercised. I remember that time when The Boy was at home with Musical Daddy. When that time ended, the cancer saga began. How blissfully ignorant we were... anyhow...
If you do want to use the Pack N Play as a place for napping (and some of them come with little bassinets on top), make sure that baby is used to it.
Other options for baby containment are the fence-things, like the SuperYard. It allows for a wider play space. We never had one and never needed one. It might not be the worst idea for putting around the TV.
You do need some kind of infant tub or tub support. We still bathe The Boy in his infant tub sometimes (the rest of the time he showers with me). We have a wide countertop, and I don't have to bend down to the bath tub. Whatever else you choose to use in the tub is up to you. Bath toys are good things to add to your shopping list. You need washcloths, and the hooded towels work really well. Baby wash and lotion are important. A bathrobe is not.
Potty stuff you'll wait on unless you're doing Elimination Communication (infant potty training, starting when they are very young). We really missed the opportunity to train early due to The Boy's illness. His interest in the potty started shortly before his diagnosis. We bought him the Baby Bjorn Little Potty, which is great for ECing. He sits on it and uses it from time to time. You'll want to decide about a freestanding potty vs something that goes on the toilet at home.
(by the way...I can't believe I haven't gotten a phone call yet about The Boy's scan).
Diapering--ask me about cloth. It's the best. And so easy and saves so much money.
Nursery/Bedding
Knowing what we know now, we're getting a bassinet this time and Baby Bear will be in there, in our room. So much easier than the back-and-forth, where we put The Boy in the crib from day 1 and you all know how well that turned out.
You don't need fancy bedding sets, just crib sheets. And bassinet/playpen sheets if you use that.
Crib toys are up to you--mobiles are fun, soothers are nice, just don't overload yourself. We had the Aquarium Soother, which The Boy liked. We had this mobile with birds that my mother liked.
If you prefer to keep your baby in your bed most of the time, it is still helpful to have some of these things for a play space or nap space, at least.
Clothing
Onesies. Sleepers. Little pants. That's about it in terms of things that you'll need a bunch of. Socks are a maybe because they don't stay on most of the time.
Let other people get you cute outfits, and pick out what you like as you figure out your needs.
Bunting--get a BundleMe or something else like that for the infant car seat. It is very helpful, and it is safe, whereas putting a baby in a snowsuit in the carseat is NOT safe.
Blankets are nice to have around, but everyone will give you blankets thinking that it's the perfect gift for a baby, so don't register for any.
(Finally got an answer about the scan--will post that next).
Any other questions about "do I need this?" feel free to ask.
So, go read Nancy's list. She has 3 kids--2 girls close in age and a baby boy.
This is the actual list:
http://www.toysrus.com/shop/index.jsp?categoryId=2964381
Here's my take.
Car seats:
For an infant car seat, the Graco Snugride works just great. I haven't used anything else. It is one of those that snaps and goes in a base in the car. Get a base for any car in which your baby will travel regularly. You can install the infant seat without the base, but it's so easy to use the base and the extra ones are not expensive.
You can start out with a convertible car seat and skip the infant seat altogether, but then you miss the convenience of not having to wake the sleeping baby. The Boy outgrew his infant seat by torso height at about 5 months. He was really too heavy to lug around in the infant seat anyway at that point. We have the Evenflo Triumph Advance carseat, still rear-facing (babies must be rear-facing to 1 year old and 20 pounds but it is safest to keep them rear-facing for much longer). The weight limit rear-facing is 35 pounds in this seat and front-facing it's 50 pounds. The height limit, a greater concern, is very tall. I do not recommend the Graco ComfortSport or Cosco Scenera if you have tall kids. However, those seats are very inexpensive and if you're in a situation where your kid is 1 or 2 and you need an extra seat for an airplane or something like that, they're good.
Strollers:
Get something that fits your infant car seat, travel system or not. We have the Graco Glider Stroller, and the infant seat snaps onto it. Once your baby is a little bigger, you won't use the seat in the stroller as much. You can get one of those frames instead, like the SnugRider that just pushes the infant seat around, but then you won't be able to use it after your child outgrows the infant seat. That said, if you're a jogging stroller person (which you can't use until baby is a little bigger) you can use that once you're done pushing around the infant seat. Think carefully about your style.
A little umbrella stroller, which also can't be used until baby is a bit older, is good to have around. You can usually keep it stored in your car. You can't keep much stuff in it, and it isn't good for off-roading, but it is better than no stroller if you don't have a bunch of room.
For an infant car seat, the Graco Snugride works just great. I haven't used anything else. It is one of those that snaps and goes in a base in the car. Get a base for any car in which your baby will travel regularly. You can install the infant seat without the base, but it's so easy to use the base and the extra ones are not expensive.
You can start out with a convertible car seat and skip the infant seat altogether, but then you miss the convenience of not having to wake the sleeping baby. The Boy outgrew his infant seat by torso height at about 5 months. He was really too heavy to lug around in the infant seat anyway at that point. We have the Evenflo Triumph Advance carseat, still rear-facing (babies must be rear-facing to 1 year old and 20 pounds but it is safest to keep them rear-facing for much longer). The weight limit rear-facing is 35 pounds in this seat and front-facing it's 50 pounds. The height limit, a greater concern, is very tall. I do not recommend the Graco ComfortSport or Cosco Scenera if you have tall kids. However, those seats are very inexpensive and if you're in a situation where your kid is 1 or 2 and you need an extra seat for an airplane or something like that, they're good.
Strollers:
Get something that fits your infant car seat, travel system or not. We have the Graco Glider Stroller, and the infant seat snaps onto it. Once your baby is a little bigger, you won't use the seat in the stroller as much. You can get one of those frames instead, like the SnugRider that just pushes the infant seat around, but then you won't be able to use it after your child outgrows the infant seat. That said, if you're a jogging stroller person (which you can't use until baby is a little bigger) you can use that once you're done pushing around the infant seat. Think carefully about your style.
A little umbrella stroller, which also can't be used until baby is a bit older, is good to have around. You can usually keep it stored in your car. You can't keep much stuff in it, and it isn't good for off-roading, but it is better than no stroller if you don't have a bunch of room.
Toys and accessories for the stroller are fun to have but not necessary. If your child never gets used to having a plastic thing parked in front of him, he doesn't expect it when it isn't there for whatever reason.
Baby Carriers:
We loved the Jeep Kolcraft front-pack carrier. We used it from the time that The Boy was tiny (8 pounds is the lower limit). Sometimes it was helpful in walking him around the house when he was fussy or when we were trying to do things. It is fantastic for sporting events and other places where a stroller or infant seat is a pain. It was always comfortable for both of us to wear. I never tried the Baby Bjorn, but Nancy likes hers.
We also have a NoJo ring sling, which was a hand-me-down. We didn't use it when The Boy was little-tiny. We instead used it when he was old enough to hold his head up. He would sit in it, front-facing, from 3 or 4 months old. He would sit on our hip in the sling until he was almost a year old. Sometimes I used it at the grocery store instead of putting him in the cart. I may try, with Baby Bear, to use it when he is a newborn, now that I know how to use it more easily.
Play Yards/Playpen:
We have a Pack N Play. The Boy never slept in it (much to the babysitter's chagrin, when he was there). When he was younger, he would play in it while Musical Daddy exercised. I remember that time when The Boy was at home with Musical Daddy. When that time ended, the cancer saga began. How blissfully ignorant we were... anyhow...
If you do want to use the Pack N Play as a place for napping (and some of them come with little bassinets on top), make sure that baby is used to it.
Other options for baby containment are the fence-things, like the SuperYard. It allows for a wider play space. We never had one and never needed one. It might not be the worst idea for putting around the TV.
Activities:
Stationary Entertainers--this is something that you can put a baby in, a slightly older baby, where they can "stand" and play, or jump and play. We have the Rainforest Jumperoo, and The Boy LOVED it!!! We didn't have an Exersaucer. You really only need one such thing and not right away.
Bouncers--this is the bouncy seat or rocking chair. This is nice to have as well, and babies can use this from the beginning. We bought this one (or something like it) from friends at a yard sale. It doesn't rock itself but it's fun when baby figures out how to make it move and reaches the toys. We used this quite a lot.
Walkers--the type of walker that the child stands in and walks around with is rarely a good idea and isn't all that helpful. Don't worry about this for right away anyway. To encourage walking, push toys that the child can walk behind are a better idea. Strollers, shopping carts, and the like.
Swings--we don't have one and didn't use one. Some moms swear by them. It's up to you. Pretty much, you do want to have a place to put baby if you need to do something. Some also use the swing for calming baby. It really depends on your preference.
Gyms and Playsets--we have a playmat with the arches over it where thing hang down and baby bats at it. We have another toy where baby can lie underneath on tummy or back, sit at, or stand at. It's nice to have such a thing. What we didn't get, and maybe will have this time, is a mat specifically designed for tummy time. Many babies hate tummy time.
Door Jumpers--we had one and The Boy used it for awhile. He preferred his stationary jumper. This isn't necessary unless you can think of a specific situation in your house where you'd need it.
Infant positioner--didn't have this either. Some use the Boppy pillow to sit baby up. Other such things are the Bumbo baby-sitter. This puts the baby in a sitting position. Some say it helps in teaching baby how to sit up on his own. It is also another place to put a baby.
Feeding Accessories:
They are attached to the front of my body. No, seriously, there are plenty of things that you "might" need and might not need. If you buy too much stuff to help you with breastfeeding, it becomes a major production, which is the opposite of what you want. You want breastfeeding to be easy.
For burp cloths, a package of prefold cloth diapers works fine. We didn't use them too often as burp cloths (and got spit up on from time to time). No need to buy anything fancy. Bibs, at the newborn stage, are not really necessary either although some prefer to use the bib to wipe off drool or little spits.
A breast pump is something that most breastfeeding moms will use. If mom isn't going back to work during the first year or so, however, it may not be necessary, or at least it won't be necessary to buy a fancy electric one. I did go back to work, and I used the Medela Pump in Style. It worked wonderfully. I have another one, the Pump In Style Advance, which I haven't used yet. Along with the pump, you'll need bottles and nipples and such. You don't need a sterilizer if you have a dishwasher. Containers are unnecessary if the bottles fit the pump (most do), but bags are helpful for milk storage, especially if you just keep a package in your pump case for when you forget bottles.
A nursing pillow is helpful during the first few weeks but you'll need to "wean" yourself off of it so that you are comfortable nursing in various situations. I have the My Brest Friend pillow.
A nursing wrap/cover falls under the category of "major production." Here's what you do (this is what Nancy does and what I do too): wear a tank top under everything. Pull your tank top under your breast and unhook your bra. Then lift the shirt and latch on the baby. Minimum exposure and no need to hide or annoy the baby. If you do need something to cover up (I don't have a problem with anyone seeing my breasts but my post-baby belly is another story), a blanket around the waist works.
Do get breast pads to combat leakage during the first month or so. Nipple cream (lanolin) is also really helpful. Spend lots of time topless during the first few weeks, as much as you can, because you'll feel better.
Solid Feeding:
We are big fans of baby-led weaning, in case you haven't heard. Ask us for more info. It's the way to go. Basically, you start food by offering steamed veggies and soft fruits, in finger-food form. Easy to pick up. Here's what you need to do this:
High chair, waterproof bibs (ones with pockets that can be washed in the sink; we like the Bumkins bibs the best), cup of water (sippy cups, although some daring parents start with a 1/4 full regular cup).
For travel, I recommend a portable feeding chair. This is good because you can strap it on any chair. For restaurants, this works as well. Another option is the TinyDiner placemat.
You do not need silverware. You do not need a food processor. You do not need to spoonfeed baby while your food gets cold. And you get to show off in restaurants when your child, as early as 6 or 7 months, sits at the table eating broccoli while the baby at the next table gets fed Chicken Surprise.
Bath & PottySwings--we don't have one and didn't use one. Some moms swear by them. It's up to you. Pretty much, you do want to have a place to put baby if you need to do something. Some also use the swing for calming baby. It really depends on your preference.
Gyms and Playsets--we have a playmat with the arches over it where thing hang down and baby bats at it. We have another toy where baby can lie underneath on tummy or back, sit at, or stand at. It's nice to have such a thing. What we didn't get, and maybe will have this time, is a mat specifically designed for tummy time. Many babies hate tummy time.
Door Jumpers--we had one and The Boy used it for awhile. He preferred his stationary jumper. This isn't necessary unless you can think of a specific situation in your house where you'd need it.
Infant positioner--didn't have this either. Some use the Boppy pillow to sit baby up. Other such things are the Bumbo baby-sitter. This puts the baby in a sitting position. Some say it helps in teaching baby how to sit up on his own. It is also another place to put a baby.
Feeding Accessories:
They are attached to the front of my body. No, seriously, there are plenty of things that you "might" need and might not need. If you buy too much stuff to help you with breastfeeding, it becomes a major production, which is the opposite of what you want. You want breastfeeding to be easy.
For burp cloths, a package of prefold cloth diapers works fine. We didn't use them too often as burp cloths (and got spit up on from time to time). No need to buy anything fancy. Bibs, at the newborn stage, are not really necessary either although some prefer to use the bib to wipe off drool or little spits.
A breast pump is something that most breastfeeding moms will use. If mom isn't going back to work during the first year or so, however, it may not be necessary, or at least it won't be necessary to buy a fancy electric one. I did go back to work, and I used the Medela Pump in Style. It worked wonderfully. I have another one, the Pump In Style Advance, which I haven't used yet. Along with the pump, you'll need bottles and nipples and such. You don't need a sterilizer if you have a dishwasher. Containers are unnecessary if the bottles fit the pump (most do), but bags are helpful for milk storage, especially if you just keep a package in your pump case for when you forget bottles.
A nursing pillow is helpful during the first few weeks but you'll need to "wean" yourself off of it so that you are comfortable nursing in various situations. I have the My Brest Friend pillow.
A nursing wrap/cover falls under the category of "major production." Here's what you do (this is what Nancy does and what I do too): wear a tank top under everything. Pull your tank top under your breast and unhook your bra. Then lift the shirt and latch on the baby. Minimum exposure and no need to hide or annoy the baby. If you do need something to cover up (I don't have a problem with anyone seeing my breasts but my post-baby belly is another story), a blanket around the waist works.
Do get breast pads to combat leakage during the first month or so. Nipple cream (lanolin) is also really helpful. Spend lots of time topless during the first few weeks, as much as you can, because you'll feel better.
Solid Feeding:
We are big fans of baby-led weaning, in case you haven't heard. Ask us for more info. It's the way to go. Basically, you start food by offering steamed veggies and soft fruits, in finger-food form. Easy to pick up. Here's what you need to do this:
High chair, waterproof bibs (ones with pockets that can be washed in the sink; we like the Bumkins bibs the best), cup of water (sippy cups, although some daring parents start with a 1/4 full regular cup).
For travel, I recommend a portable feeding chair. This is good because you can strap it on any chair. For restaurants, this works as well. Another option is the TinyDiner placemat.
You do not need silverware. You do not need a food processor. You do not need to spoonfeed baby while your food gets cold. And you get to show off in restaurants when your child, as early as 6 or 7 months, sits at the table eating broccoli while the baby at the next table gets fed Chicken Surprise.
You do need some kind of infant tub or tub support. We still bathe The Boy in his infant tub sometimes (the rest of the time he showers with me). We have a wide countertop, and I don't have to bend down to the bath tub. Whatever else you choose to use in the tub is up to you. Bath toys are good things to add to your shopping list. You need washcloths, and the hooded towels work really well. Baby wash and lotion are important. A bathrobe is not.
Potty stuff you'll wait on unless you're doing Elimination Communication (infant potty training, starting when they are very young). We really missed the opportunity to train early due to The Boy's illness. His interest in the potty started shortly before his diagnosis. We bought him the Baby Bjorn Little Potty, which is great for ECing. He sits on it and uses it from time to time. You'll want to decide about a freestanding potty vs something that goes on the toilet at home.
(by the way...I can't believe I haven't gotten a phone call yet about The Boy's scan).
Diapering--ask me about cloth. It's the best. And so easy and saves so much money.
Nursery/Bedding
Knowing what we know now, we're getting a bassinet this time and Baby Bear will be in there, in our room. So much easier than the back-and-forth, where we put The Boy in the crib from day 1 and you all know how well that turned out.
You don't need fancy bedding sets, just crib sheets. And bassinet/playpen sheets if you use that.
Crib toys are up to you--mobiles are fun, soothers are nice, just don't overload yourself. We had the Aquarium Soother, which The Boy liked. We had this mobile with birds that my mother liked.
If you prefer to keep your baby in your bed most of the time, it is still helpful to have some of these things for a play space or nap space, at least.
Clothing
Onesies. Sleepers. Little pants. That's about it in terms of things that you'll need a bunch of. Socks are a maybe because they don't stay on most of the time.
Let other people get you cute outfits, and pick out what you like as you figure out your needs.
Bunting--get a BundleMe or something else like that for the infant car seat. It is very helpful, and it is safe, whereas putting a baby in a snowsuit in the carseat is NOT safe.
Blankets are nice to have around, but everyone will give you blankets thinking that it's the perfect gift for a baby, so don't register for any.
(Finally got an answer about the scan--will post that next).
Any other questions about "do I need this?" feel free to ask.
Still no word
The doctor said that she'd call yesterday afternoon. Now it's the morning (obviously) and we have heard nothing about the scan. You'd think that hearing nothing means that everything is okay and we have nothing to worry about because if it were urgent, then they'd call. However, I remember, very vividly, a mom on the Wilms Tumor email group hearing nothing, and hearing nothing, and then learning that her daughter's cancer was back for round three.
I feel so paralyzed right now. I don't want to do anything until I get these results. Right now The Boy is pulling out all the freshly folded diapers from the laundry basket and I have no interest in stopping him. It is amazingly cute. Now he's putting them back in. He just likes to do that, take things out and put them back in. Maybe, possibly, once he has put them back in, we'll move into his room so that I can put them away and he can play with his trains.
I feel so paralyzed right now. I don't want to do anything until I get these results. Right now The Boy is pulling out all the freshly folded diapers from the laundry basket and I have no interest in stopping him. It is amazingly cute. Now he's putting them back in. He just likes to do that, take things out and put them back in. Maybe, possibly, once he has put them back in, we'll move into his room so that I can put them away and he can play with his trains.
Tuesday, February 17, 2009
Tired of waiting for you....
The scan today was a very short and simple procedure. They didn't seem to use much to put him under either, because once I got him back he was pretty much back to normal.
The waiting part was much longer than we expected. I kept him up a little later last night, on purpose, so that he'd be tired in the morning and maybe sleep a little extra. He didn't so much, although he did fall asleep right before he went in for the procedure, but he also didn't spend much time complaining about the fact that he was hungry.
I was worried about that, because this was the first time I had taken him in for a scan since he stopped nursing. Breastmilk is allowed 3 hours before sedation; food is not. But then again, he is older, and doesn't have the same 'round-the-clock eating requirements that a younger baby would have.
Right now, any minute in fact, we are awaiting the results of the scan. The doctor will call us and let us know what everything looks like. She says that she expects to find no evidence of disease (the magic NED!), no need for radiation treatment, and that chemo will continue with the next treatment starting on Friday. We hope she's right.
On the Wilms Tumor email group, they use the word "scanxiety" quite frequently. We've got it.
As soon as we hear something, so will you.
The waiting part was much longer than we expected. I kept him up a little later last night, on purpose, so that he'd be tired in the morning and maybe sleep a little extra. He didn't so much, although he did fall asleep right before he went in for the procedure, but he also didn't spend much time complaining about the fact that he was hungry.
I was worried about that, because this was the first time I had taken him in for a scan since he stopped nursing. Breastmilk is allowed 3 hours before sedation; food is not. But then again, he is older, and doesn't have the same 'round-the-clock eating requirements that a younger baby would have.
Right now, any minute in fact, we are awaiting the results of the scan. The doctor will call us and let us know what everything looks like. She says that she expects to find no evidence of disease (the magic NED!), no need for radiation treatment, and that chemo will continue with the next treatment starting on Friday. We hope she's right.
On the Wilms Tumor email group, they use the word "scanxiety" quite frequently. We've got it.
As soon as we hear something, so will you.
Monday, February 16, 2009
Not much ado...but scan tomorrow
We've had a long weekend, much needed, and it's been pretty lazy. I like the fact that neither my husband nor my son require too much in the way of being amused and are satisfied just to play or sit around or watch something.
The Boy has been gradually embracing the idea of walking, even though it is still not his primary mode of transportation. He will take a few steps from having pulled up onto something, and he will also push up from the floor. I think it depends how much energy he has, whether he'll do a lot of walking while he plays or not.
Tomorrow, The Boy has his CT scan. First one since before surgery and the new treatment regimen. They will be looking for any new growth in either the kidney bed, or lungs or abdomen (which we REALLY hope they don't find) as well as checking to see that the little bit of tumor that is left has shrunk or is gone. After they go over the scan, we will get our next direction. Likely, the next thing will be two more chemos in the new regimen, one of each type (5 day Cytoxan and Etoposide, then the Carboplatin and Etoposide 3 weeks later).
Nothing too new and exciting with Baby Bear (my new name for the impending bundle). Lots of...kicking and wriggling. I'm showing a little bit. Not much. Just like last time.
The Boy has been gradually embracing the idea of walking, even though it is still not his primary mode of transportation. He will take a few steps from having pulled up onto something, and he will also push up from the floor. I think it depends how much energy he has, whether he'll do a lot of walking while he plays or not.
Tomorrow, The Boy has his CT scan. First one since before surgery and the new treatment regimen. They will be looking for any new growth in either the kidney bed, or lungs or abdomen (which we REALLY hope they don't find) as well as checking to see that the little bit of tumor that is left has shrunk or is gone. After they go over the scan, we will get our next direction. Likely, the next thing will be two more chemos in the new regimen, one of each type (5 day Cytoxan and Etoposide, then the Carboplatin and Etoposide 3 weeks later).
Nothing too new and exciting with Baby Bear (my new name for the impending bundle). Lots of...kicking and wriggling. I'm showing a little bit. Not much. Just like last time.
Friday, February 13, 2009
Ten Fingers, Ten Toes...
All looking good! DC2 (darling child #2) is measuring correctly and everything looks like it is supposed to look. Heart is nicely equipped, bones are looking fine, and I did have the tech take an extra-close look at the kidneys (even though the tumor that could be seen at this stage is not the same type that The Boy has). So far, no tumors!
Oh yea, and for those who are wondering: BLUE TEAM!!!!!!!
Oh yea, and for those who are wondering: BLUE TEAM!!!!!!!
Thursday, February 12, 2009
Baby 2 Ultrasound Tomorrow (Warning)
If you are one of those people who does not wish to find out the sex of our baby until his/her birthday, on or around July 4th, you'll want to avoid my blog tomorrow. Granted, I can't guarantee that I can stop this information from being disseminated, because...well, because. But let the record show that I made the effort.
Adventures in Cancer-Land
Yesterday morning was highlighted by what will be forever known as The Great Neupogen Chase. What normally happens with the Neupogen is, we give it in the evening when Daddy can hold him securely and I can give the shot. We missed it on Sunday evening, I guess because I had been out and our routine was off...anyhow, we did give it Monday morning and Tuesday morning, in the usual way, but on Wednesday morning, Musical Daddy was back at work and I was by myself.
I have had mixed success administering Neupogen to The Boy when I'm on my own. Usually it involves a careful sneak attack, for lack of a better term. I figured that since he was just relaxing on the bed, I could get in there and give the shot before he had much time to get mad.
What happened instead was that he started to crawl away with the needle still stuck in him. Twice.
So he has this nice little triangle of dots on his left leg. Those will go away soon enough. He usually has a few dots on his leg at a time, and he's been given so many of these shots (yet, somehow, he still loves me, for which I am grateful).
Something that only a cancer parent would say: "You know, with the 5-day chemo coming up, that's an even longer break from the Neupogen!"
Today's visit to the treatment center was an all-day event, as I somewhat suspected. The Boy received blood and platelets. Sometimes his visits where he gets blood are very calm and boring, where he just wants to lie around and let me do the same. Not this time--thank goodness Grandpa came to help. I was feeling rather tired and pregnant by the mid-afternoon.
Adding to the fun was a slight fever of 99.7 axillary, just over the limit of automatic ER visit. I wasn't too too worried, because I knew that his ANC (absolute neutrophil count; number of useful white blood cells) was decent enough so that he probably wouldn't get admitted, but they didn't just go ahead and send us home right away. We reminded them that The Boy had just been playing and scampering around like crazy, which would also account for the elevated heart rate (that, and the 3 or 4 cups of extra fluid that he had pumped into his body), and they said they'd have us sit for a bit...take the temp again, 99.2. Take it again, 99.0. Good deal. Go home.
Someone is ready for bed. We are SO glad that he'll be going to sleep in his own bed instead of in the hospital. It's something that we're thankful for every night it happens, here in cancer-land.
I have had mixed success administering Neupogen to The Boy when I'm on my own. Usually it involves a careful sneak attack, for lack of a better term. I figured that since he was just relaxing on the bed, I could get in there and give the shot before he had much time to get mad.
What happened instead was that he started to crawl away with the needle still stuck in him. Twice.
So he has this nice little triangle of dots on his left leg. Those will go away soon enough. He usually has a few dots on his leg at a time, and he's been given so many of these shots (yet, somehow, he still loves me, for which I am grateful).
Something that only a cancer parent would say: "You know, with the 5-day chemo coming up, that's an even longer break from the Neupogen!"
Today's visit to the treatment center was an all-day event, as I somewhat suspected. The Boy received blood and platelets. Sometimes his visits where he gets blood are very calm and boring, where he just wants to lie around and let me do the same. Not this time--thank goodness Grandpa came to help. I was feeling rather tired and pregnant by the mid-afternoon.
Adding to the fun was a slight fever of 99.7 axillary, just over the limit of automatic ER visit. I wasn't too too worried, because I knew that his ANC (absolute neutrophil count; number of useful white blood cells) was decent enough so that he probably wouldn't get admitted, but they didn't just go ahead and send us home right away. We reminded them that The Boy had just been playing and scampering around like crazy, which would also account for the elevated heart rate (that, and the 3 or 4 cups of extra fluid that he had pumped into his body), and they said they'd have us sit for a bit...take the temp again, 99.2. Take it again, 99.0. Good deal. Go home.
Someone is ready for bed. We are SO glad that he'll be going to sleep in his own bed instead of in the hospital. It's something that we're thankful for every night it happens, here in cancer-land.
Tuesday, February 10, 2009
I insist!
We are feeling somewhat better today. We all had rice cereal for breakfast, and I'm feeling more human. The Boy is still feeling okay. It is his low point, count-wise, but he hasn't needed blood or platelets since right before his discharge after his last chemo. Yesterday's numbers were good enough, and he may go lower but not by much.
This morning, Musical Daddy returned to bed, and we joined him even though The Boy wasn't quite ready for a nap yet. Daddy wanted to sleep and asked me to take The Boy back outside, but when I did, he got SO SAD and cried at the bedroom door. He missed his daddy so much! Eventually he did nap, as did I, but it didn't last long. Now we're out in the living room; he's playing with ALL of his toys, and I'm still trying to rest a bit in the chair. I had a small bagel and some yogurt, which seem to be sitting reasonably well.
This morning, Musical Daddy returned to bed, and we joined him even though The Boy wasn't quite ready for a nap yet. Daddy wanted to sleep and asked me to take The Boy back outside, but when I did, he got SO SAD and cried at the bedroom door. He missed his daddy so much! Eventually he did nap, as did I, but it didn't last long. Now we're out in the living room; he's playing with ALL of his toys, and I'm still trying to rest a bit in the chair. I had a small bagel and some yogurt, which seem to be sitting reasonably well.
Monday, February 9, 2009
Crap-tastic!
I'm sick. Musical Daddy is sick. It doesn't seem as though The Boy is sick right now. Hopefully he was already sick and gave it to us...but I haven't eaten anything in about 24 hours. I have had some ginger ale and some vitamin water.
Grandpa is taking The Boy for a walk. I'm in bed. The Boy is a pretty good rester and was a good sport earlier today, napping next to me for about 2 hours while I sat in the chair watching TV. His counts were decent today considering that right around now is his low point for blood counts. Perhaps he will need platelets at his next blood check, but perhaps not. He is cooperating nicely for the finger stick, which is how they draw small amounts of blood from patients without finding a vein or accessing the port (which sometimes they have to do anyway if the patient is already there for some other IV medication). He used to cry hysterically, but this time he was fine, and he was even on Grandpa's lap instead of mine for the process.
The good news is that I don't have to go anywhere with The Boy until Thursday morning for his next blood check. I have orchestra on Wednesday night, and I should, hopefully, be well enough to go.
I'm going to try a nap and see how it goes.
Grandpa is taking The Boy for a walk. I'm in bed. The Boy is a pretty good rester and was a good sport earlier today, napping next to me for about 2 hours while I sat in the chair watching TV. His counts were decent today considering that right around now is his low point for blood counts. Perhaps he will need platelets at his next blood check, but perhaps not. He is cooperating nicely for the finger stick, which is how they draw small amounts of blood from patients without finding a vein or accessing the port (which sometimes they have to do anyway if the patient is already there for some other IV medication). He used to cry hysterically, but this time he was fine, and he was even on Grandpa's lap instead of mine for the process.
The good news is that I don't have to go anywhere with The Boy until Thursday morning for his next blood check. I have orchestra on Wednesday night, and I should, hopefully, be well enough to go.
I'm going to try a nap and see how it goes.
Sunday, February 8, 2009
And on the menu for today...
The Boy has been a little sick to his stomach this weekend. Friday snack, Friday dinner, and Saturday lunch were all seen again. I know that you didn't really want to know that, but I didn't either--yet here we are.
He is currently on a bland diet, which fortunately includes a normal breakfast of rice cereal with honey and vanilla yogurt. Rice cakes and applesauce serve as welcome snacks, but meals are a little trickier when he sees us eating more interesting food. We need to have learned from previous experiences--tuna and mac and cheese are NOT on the list.
He is off his Pepcid as per the doctor's recommendation, when I told her that taking the Pepcid sometimes makes him sick too. She agreed that it rather defeats the purpose of a stomach acid medicine if he just pukes from it. I am a little bit concerned, though, that it might have been doing him some good when we were able to get it in him successfully. Alternating it with his magical anti-nausea meds seems to work, but he doesn't always need those (sure did this week though).
Last night we went to a party for an uncle's 65th birthday. Technically, he is a cousin, but typically with the older generation of family, the title of "uncle" makes more sense. It was nice to see so much of Musical Daddy's family, especially since many of them have never met The Boy. Interestingly enough, the family all knew not to touch him, or to offer pats on the back which are pretty safe. Some guy that I didn't know tried to shake hands with him, and I had to step away and tell him that The Boy is a cancer patient and needs to keep his distance.
We'll keep things simple again today and perhaps serve some chicken to The Boy.
He is currently on a bland diet, which fortunately includes a normal breakfast of rice cereal with honey and vanilla yogurt. Rice cakes and applesauce serve as welcome snacks, but meals are a little trickier when he sees us eating more interesting food. We need to have learned from previous experiences--tuna and mac and cheese are NOT on the list.
He is off his Pepcid as per the doctor's recommendation, when I told her that taking the Pepcid sometimes makes him sick too. She agreed that it rather defeats the purpose of a stomach acid medicine if he just pukes from it. I am a little bit concerned, though, that it might have been doing him some good when we were able to get it in him successfully. Alternating it with his magical anti-nausea meds seems to work, but he doesn't always need those (sure did this week though).
Last night we went to a party for an uncle's 65th birthday. Technically, he is a cousin, but typically with the older generation of family, the title of "uncle" makes more sense. It was nice to see so much of Musical Daddy's family, especially since many of them have never met The Boy. Interestingly enough, the family all knew not to touch him, or to offer pats on the back which are pretty safe. Some guy that I didn't know tried to shake hands with him, and I had to step away and tell him that The Boy is a cancer patient and needs to keep his distance.
We'll keep things simple again today and perhaps serve some chicken to The Boy.
Thursday, February 5, 2009
Daily Activities, and Baby Phase part 2
Naps. Meals. Diapers. Teeth-brushing. That's important.
Playing with ALL the toys at once. Also important.
The Boy demonstrated quite a liking for violin music, specifically "Twinkle" and the typical violin class variations a la Suzuki. I have started to play that for him at least once a day, and he loves it.
We usually get some coloring time in there.
Sometimes we have to go for appointments; other times I insist on a mall-walk so that I can get some exercise and NOT freeze my bum off.
Very important stuff indeed.
Subject change: I'm going to somewhat disagree with Musical Daddy's assessment regarding The Boy and his bed. There are plenty of children his age, and even older, who start the night in their own beds without major incident and join their parents in the middle of the night, also without major incident. Really, the only time it is an issue is when The Boy is immediately post-chemo, which we addressed last time by my sleeping elsewhere in the house and The Boy staying with Daddy. I don't mind doing that for one night if it means that everyone gets more sleep and stays safe. But, back to the original issue, it may become a problem as I become more pregnant. It may not.
My feeling is, we have to keep putting him in his bed at night and sometimes for naps (even though right now he's in my lap) because he needs to know that his bed and his room are for him. Of course, both he and I were raised in typical families, where parents slept apart from their children from the day that they came home. My mother now admits to sometimes putting me in her bed because I was a "difficult" baby in that respect, just so that she could get some decent sleep.
I like the little extra bit of freedom that I get after putting him to bed in the evening. I can get a bit of housework done, and I can just sit here in this chair.
On my mommy message board, sleeping arrangements are a hot topic. Many parents swear by "cry-it-out" (what is "it" and if my kid still has it, so what?) and that children manipulate their parents, and need to be taught to sleep on their own (some moms start closing the door at 2 months, which is ridiculous to me). Other parents believe that learning to go to sleep is something that children learn eventually. One time I started a thread about "closet co-sleeping" in an effort to find out how many families actually let the kids into their bed, either sometimes or always, and it was surprising how many there were.
People don't usually talk about the fact that their 10 month old or 2 year old doesn't sleep through the night. They are ashamed of it; they think that it makes them bad parents. They fall prey to advice coming from older generations saying that these children will be too spoiled or dependent. At times I have felt that pressure and judgment, but I'm done with it now. We'll do what works for us.
Dr. Sears, who is definitely more on the hippie end of things, always says that sleeping arrangements that allow everyone to get the most sleep are the right ones.
Here's my "final answer" assessment on our situation, at least for now: The Boy is still a baby. He is stuck in the baby phase in many respects, probably due to his illness and treatment. He'll get older. He'll mature. This too shall pass. Right now, we need to roll with him on this one. I want him to start the night in his bed every night, and he seems willing to do that. Which is progress. When I put him in there, he lies comfortably and sticks that thumb in his mouth. I can't yet leave the room with him awake, because he still throws a fit. However, I can leave the room with him lying on our bed, because he is more comfortable there. He needs to get comfortable with his own bed, and he will.
It will take longer than it might otherwise with a typical child who doesn't have all of this extra baggage. We can't just leave him to cry, which for many seems to be the magical solution. There is no quick fix for this one, any more than there is to get a typical picky child to eat a varied menu just because you serve it.
Playing with ALL the toys at once. Also important.
The Boy demonstrated quite a liking for violin music, specifically "Twinkle" and the typical violin class variations a la Suzuki. I have started to play that for him at least once a day, and he loves it.
We usually get some coloring time in there.
Sometimes we have to go for appointments; other times I insist on a mall-walk so that I can get some exercise and NOT freeze my bum off.
Very important stuff indeed.
Subject change: I'm going to somewhat disagree with Musical Daddy's assessment regarding The Boy and his bed. There are plenty of children his age, and even older, who start the night in their own beds without major incident and join their parents in the middle of the night, also without major incident. Really, the only time it is an issue is when The Boy is immediately post-chemo, which we addressed last time by my sleeping elsewhere in the house and The Boy staying with Daddy. I don't mind doing that for one night if it means that everyone gets more sleep and stays safe. But, back to the original issue, it may become a problem as I become more pregnant. It may not.
My feeling is, we have to keep putting him in his bed at night and sometimes for naps (even though right now he's in my lap) because he needs to know that his bed and his room are for him. Of course, both he and I were raised in typical families, where parents slept apart from their children from the day that they came home. My mother now admits to sometimes putting me in her bed because I was a "difficult" baby in that respect, just so that she could get some decent sleep.
I like the little extra bit of freedom that I get after putting him to bed in the evening. I can get a bit of housework done, and I can just sit here in this chair.
On my mommy message board, sleeping arrangements are a hot topic. Many parents swear by "cry-it-out" (what is "it" and if my kid still has it, so what?) and that children manipulate their parents, and need to be taught to sleep on their own (some moms start closing the door at 2 months, which is ridiculous to me). Other parents believe that learning to go to sleep is something that children learn eventually. One time I started a thread about "closet co-sleeping" in an effort to find out how many families actually let the kids into their bed, either sometimes or always, and it was surprising how many there were.
People don't usually talk about the fact that their 10 month old or 2 year old doesn't sleep through the night. They are ashamed of it; they think that it makes them bad parents. They fall prey to advice coming from older generations saying that these children will be too spoiled or dependent. At times I have felt that pressure and judgment, but I'm done with it now. We'll do what works for us.
Dr. Sears, who is definitely more on the hippie end of things, always says that sleeping arrangements that allow everyone to get the most sleep are the right ones.
Here's my "final answer" assessment on our situation, at least for now: The Boy is still a baby. He is stuck in the baby phase in many respects, probably due to his illness and treatment. He'll get older. He'll mature. This too shall pass. Right now, we need to roll with him on this one. I want him to start the night in his bed every night, and he seems willing to do that. Which is progress. When I put him in there, he lies comfortably and sticks that thumb in his mouth. I can't yet leave the room with him awake, because he still throws a fit. However, I can leave the room with him lying on our bed, because he is more comfortable there. He needs to get comfortable with his own bed, and he will.
It will take longer than it might otherwise with a typical child who doesn't have all of this extra baggage. We can't just leave him to cry, which for many seems to be the magical solution. There is no quick fix for this one, any more than there is to get a typical picky child to eat a varied menu just because you serve it.
Tuesday, February 3, 2009
Evaluation
The Boy had his evaluation for Early Intervention services yesterday evening. What they found was that he does qualify for physical therapy. Fortunately, his cognitive and social skills seem to be on track. The issues stem from the Vincristine, which he got during his first chemo regimen.
I'm pretty glad that he qualifies because it validates my concerns. I wasn't just being a crazy pushy mom, frustrated with my child being average at something. In fact, I was right to believe that there was a problem with a child only just taking his first steps at 17 months and rarely being able to walk for any practical purpose. When I bring him in for his appointments, I have him walk inside (not outside now, because the weather complicates things) holding my hand, and he'll go for a bit and then sit down. I don't think that he's being defiant; he just can't handle it.
He has an overall strength issue, which he compensates for by trying to use more muscles when performing tasks. His fine motor skills are good but just a little off.
I am EXTREMELY glad that we went the way we did with baby-led weaning and having him feed himself. He was quite good at it by the time he was diagnosed. With these issues coming up, I wonder how hard it would have been to get him to feed himself had we been giving him baby food with the spoon and the airplane game and all of that nonsense with which I couldn't be bothered.
So now we wait for the social worker to contact us and for us to set up a schedule for physical therapy. It will probably be fun for The Boy. Someone new will come to the house to play.
In other evaluation news, The Boy has a CT scan coming up. Most likely, it will take place on or around February 17th, at which point we will see what's going on in there. We're hoping for NO tumor or at least to see some shrinkage of the little bit that was left after the surgery. Of course, we are hoping for no regrowth and no spreading.
Not much else going on, really. We'll hit the mall tomorrow morning for a walk.
I'm pretty glad that he qualifies because it validates my concerns. I wasn't just being a crazy pushy mom, frustrated with my child being average at something. In fact, I was right to believe that there was a problem with a child only just taking his first steps at 17 months and rarely being able to walk for any practical purpose. When I bring him in for his appointments, I have him walk inside (not outside now, because the weather complicates things) holding my hand, and he'll go for a bit and then sit down. I don't think that he's being defiant; he just can't handle it.
He has an overall strength issue, which he compensates for by trying to use more muscles when performing tasks. His fine motor skills are good but just a little off.
I am EXTREMELY glad that we went the way we did with baby-led weaning and having him feed himself. He was quite good at it by the time he was diagnosed. With these issues coming up, I wonder how hard it would have been to get him to feed himself had we been giving him baby food with the spoon and the airplane game and all of that nonsense with which I couldn't be bothered.
So now we wait for the social worker to contact us and for us to set up a schedule for physical therapy. It will probably be fun for The Boy. Someone new will come to the house to play.
In other evaluation news, The Boy has a CT scan coming up. Most likely, it will take place on or around February 17th, at which point we will see what's going on in there. We're hoping for NO tumor or at least to see some shrinkage of the little bit that was left after the surgery. Of course, we are hoping for no regrowth and no spreading.
Not much else going on, really. We'll hit the mall tomorrow morning for a walk.
Sunday, February 1, 2009
3, 4, out the door!
Closer to 4:30, but we were out the door even earlier than last time. The transfusion was fine, although the Benadryl-induced nap always concerns me, because the blood is supposed to perk him up, and that one time when he got the fever, he was so sleepy too. The Benadryl, along with Tylenol, are given prior to each transfusion, to stave off any reactions. Nevertheless, Daddy took the opportunity to nap with The Boy while Aunt M and I did some work on packing the stuff.
The Super Bowl has been fairly amazing. It's just the best to be home. We always feel so good when we get here.
The Super Bowl has been fairly amazing. It's just the best to be home. We always feel so good when we get here.
Day 3--looking toward the door
The Boy got his last dose of Etoposide early (which I didn't know they could do but I guess they decided to do it anyway), and we learned that his hemoglobin was rather low. He needed some blood, which is always a concern.
Right now, he is napping with Daddy and there is an hour left of the blood.
Aunt M is here, and my parents have left. Aunt M is fun to be around all the time, but especially when sports are involved. She is going to stay over tonight to watch the game and help with the diaper changing nightmare that is post-chemo.
All we have to do is hope for no fever or sudden reactions, and then we can go. His little cheeks are looking pinker!
Right now, he is napping with Daddy and there is an hour left of the blood.
Aunt M is here, and my parents have left. Aunt M is fun to be around all the time, but especially when sports are involved. She is going to stay over tonight to watch the game and help with the diaper changing nightmare that is post-chemo.
All we have to do is hope for no fever or sudden reactions, and then we can go. His little cheeks are looking pinker!
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