I will be bringing this up with the doctor when we next see him (or her, depending on which doctor is on today), but I wanted to get some feedback from my readers as well.
As you've recently learned, I will be expecting child #2 in July, and The Boy will not be anywhere close to finished with his treatments and hospital stays. As a mommy, I'm certainly going to want to be with both of my babies as much as I can be. I am wondering, though, does the hospital prohibition on smaller child visitors extend to infants? Or does it even extend to younger siblings at all?
Fortunately, when the new little one is brand-new, it will be the summertime and Musical Daddy won't be in school. He may still be doing the summer program, but that's a much shorter day. So he'll be more available at that time.
But once the end of August comes, it's marching season. And then school is back in again.
I can't see pawning the new baby off on a sitter for the better part of the day every time that The Boy is in the hospital. We can't afford it. We'll keep Ms. R. in the loop, because there may be some occasions when we'll need someone to watch one or both children, but not all the time.
Remember, also, that the new baby will be nursing, because we won't have it any other way. Certainly I pumped for The Boy, but that was during the schoolday, which was pretty short, and The Boy napped a lot with Daddy during the day. I don't have objections to pumping and feeding bottles but I don't want it to be for dumb reasons.
I guess at this point this is just a rant...but if you can offer any advice on what to do about everything, please share.
Saturday, November 29, 2008
Normal
The hospital thing is going...okay. It's not fantastic. It's the hospital. But The Boy is having a reasonable time. He is happy enough, and most of the time he feels okay. The first night here was absolutely miserable, but the next two nights were fine. I ended up staying, along with my mom, the first night because I fell asleep. The next night, my mother stayed, and last night, Musical Daddy stayed and they had guy's night. How cute.
We served him turkey for lunch today and it must have triggered some sort of nausea because he puked up a bunch. Ew. We meant to offer him some soup and fries, which are now cold. He's sleeping on Grandma.
The television is on, frequently, and he has his favorite videos. The room has a VCR but, sadly, no DVD player. The playroom has tapes, though. Goodnight Moon, of course, for sleepytime, and the Disney Sing-Along Songs "You Can Fly". He enjoys the music. When the tape ends, he points at the TV and looks at us.
He also has said "ap" a few times and pointed to apples! He likes apples, although he only takes a few bites at any given time. He picks up the whole thing and chomps away. Unfortunately, the apple a day doesn't really do the trick. Because the doctors still come.
Almost all of David's nurses are ones that we know already, many from his initial stay at the end of June. Today's nurse was the very first one that was caring for The Boy when we brought him in for his diagnosis.
So this is what we do. Every few weeks, we hang out here.
We served him turkey for lunch today and it must have triggered some sort of nausea because he puked up a bunch. Ew. We meant to offer him some soup and fries, which are now cold. He's sleeping on Grandma.
The television is on, frequently, and he has his favorite videos. The room has a VCR but, sadly, no DVD player. The playroom has tapes, though. Goodnight Moon, of course, for sleepytime, and the Disney Sing-Along Songs "You Can Fly". He enjoys the music. When the tape ends, he points at the TV and looks at us.
He also has said "ap" a few times and pointed to apples! He likes apples, although he only takes a few bites at any given time. He picks up the whole thing and chomps away. Unfortunately, the apple a day doesn't really do the trick. Because the doctors still come.
Almost all of David's nurses are ones that we know already, many from his initial stay at the end of June. Today's nurse was the very first one that was caring for The Boy when we brought him in for his diagnosis.
So this is what we do. Every few weeks, we hang out here.
Friday, November 28, 2008
Thanksgiving
Anyone who has had any contact with my family knows that we know how to throw a party. More specifically, we know how to make a feast. I think I mentioned that The Boy was slated to spend Thanksgiving in the hospital (and if I didn't, Musical Daddy certainly did), but there was no reason not to make the meal. Besides, thanks to a generous donation from someone at The Boy's treatment center, we already had a nice big kosher turkey.
So we did it--Thanksgiving at the hospital. Pictures will follow. The Boy enjoyed the company and socialized beautifully. Thanks to Justin and his mom for a DELICIOUS pareve chocolate cake.
Despite the ridiculous second half of the year that we've been having, we have so much for which to be thankful. Certainly the "im yirtzah" (the phrase is "im yirtzah Hashem" or "if G-d wills it"; the status of a pregnancy is considered to be fragile in the Jewish tradition, which is why we say "in good time" (but in Hebrew) to congratulate a woman on her pregnancy, and also why we don't do baby showers) as well as The Boy, who is handsome, charming, smart, friendly, and so sweet. Our families and friends. Our jobs (even though I have to leave mine, I'm still thankful because they'll be giving me extended leave so I can come back if I want to). Our lovely home. And an extra thanks for my mom who, bless her heart, is staying the night at the hospital with The Boy.
So I can get sleep. Which I should do.
So we did it--Thanksgiving at the hospital. Pictures will follow. The Boy enjoyed the company and socialized beautifully. Thanks to Justin and his mom for a DELICIOUS pareve chocolate cake.
Despite the ridiculous second half of the year that we've been having, we have so much for which to be thankful. Certainly the "im yirtzah" (the phrase is "im yirtzah Hashem" or "if G-d wills it"; the status of a pregnancy is considered to be fragile in the Jewish tradition, which is why we say "in good time" (but in Hebrew) to congratulate a woman on her pregnancy, and also why we don't do baby showers) as well as The Boy, who is handsome, charming, smart, friendly, and so sweet. Our families and friends. Our jobs (even though I have to leave mine, I'm still thankful because they'll be giving me extended leave so I can come back if I want to). Our lovely home. And an extra thanks for my mom who, bless her heart, is staying the night at the hospital with The Boy.
So I can get sleep. Which I should do.
Wednesday, November 26, 2008
Here we go again....
The Boy is going to be a big brother! Number two is on the way, EDD 07/04/2009.
Of course, when we found out about it, we still thought that The Boy would finish treatment in January or so, but nevertheless, children are always a blessing.
Besides--if babies only happened when they were convenient, there'd barely be any babies.
This ultrasound photo, taken today, is pretty good. You can already see the head, and we saw the heart beating on the monitor. Wahoo!
Of course, when we found out about it, we still thought that The Boy would finish treatment in January or so, but nevertheless, children are always a blessing.
Besides--if babies only happened when they were convenient, there'd barely be any babies.
This ultrasound photo, taken today, is pretty good. You can already see the head, and we saw the heart beating on the monitor. Wahoo!
Sunday, November 23, 2008
Cancer friends
I was just remarking to Musical Daddy that since we're in this cancer thing for a much longer haul, we could really use some cancer friends. Specifically, parents of little kids who have cancer. I hope that there aren't too many around, because cancer sucks, but if they're nearby, we think we want to be friends with them.
Here's the thing, and please don't take this the wrong way as if we don't appreciate your love and support:
Every conversation that we have with anyone is colored with the issue of The Boy and his cancer. Usually when you talk to someone and you ask how they're doing, you may also ask how the kids are and what they are up to, and it's a pleasantry, and it's fun. Except with us. Every time you talk to us, and you know you do this, you have to ask us how The Boy is, and you know that you're going to get some answer that is just chock-full of cancer talk. And sometimes, we want to give updates. Sometimes, we don't. Sometimes we just want to say "The Boy did a great job standing by himself today" or "The Boy made SUCH a mess eating fried rice" or, to a fellow toddler parent "That poo was SO disgusting, and of course, his hands went right for it."
But with cancer-friends, it would probably feel different to talk about treatments and illness and other cancer stuff. We'd talk about it and table the discussion. Then we'd talk about typical kid stuff, knowing that none of us wants to talk about cancer stuff anymore and none of us wants to.
So we love to have the support of our friends and family. Sometimes it helps that other family members have gone through cancer stuff. Sometimes it doesn't, because we want to believe that The Boy will have a better outcome than my mother-in-law or my sister-in-law's father. As in, they died of cancer. As many people do. We want it to be more like my mother's cancer, where she had surgery, a bunch of chemo, some radiation, and then she was done. Clean scans ever since. Of course, the whole on-treatment relapse thing already makes it more complicated. But point being, we want him to come out on the other side as a normal 3 year old or however old he'll be when he's done, with just some cool scars.
Here's the thing, and please don't take this the wrong way as if we don't appreciate your love and support:
Every conversation that we have with anyone is colored with the issue of The Boy and his cancer. Usually when you talk to someone and you ask how they're doing, you may also ask how the kids are and what they are up to, and it's a pleasantry, and it's fun. Except with us. Every time you talk to us, and you know you do this, you have to ask us how The Boy is, and you know that you're going to get some answer that is just chock-full of cancer talk. And sometimes, we want to give updates. Sometimes, we don't. Sometimes we just want to say "The Boy did a great job standing by himself today" or "The Boy made SUCH a mess eating fried rice" or, to a fellow toddler parent "That poo was SO disgusting, and of course, his hands went right for it."
But with cancer-friends, it would probably feel different to talk about treatments and illness and other cancer stuff. We'd talk about it and table the discussion. Then we'd talk about typical kid stuff, knowing that none of us wants to talk about cancer stuff anymore and none of us wants to.
So we love to have the support of our friends and family. Sometimes it helps that other family members have gone through cancer stuff. Sometimes it doesn't, because we want to believe that The Boy will have a better outcome than my mother-in-law or my sister-in-law's father. As in, they died of cancer. As many people do. We want it to be more like my mother's cancer, where she had surgery, a bunch of chemo, some radiation, and then she was done. Clean scans ever since. Of course, the whole on-treatment relapse thing already makes it more complicated. But point being, we want him to come out on the other side as a normal 3 year old or however old he'll be when he's done, with just some cool scars.
Thursday, November 20, 2008
Reinvention
Here's what it really means, The Boy's treatment schedule:
It means that I will be leaving my job. Since the treatment is expected to take two years, that's how long I'll be out of work. I will try to apply for a "leave of absence" just so that I have the option, should I choose, to return to the district and still keep my tenure and my years of service. There is no guarantee that I can even get such a thing. The school board would have to approve it, and while it helps that two board members are parents of some of my favorite orchestra students, I'm not sure if a two year leave is even feasible. I'll find out soon enough
I guess when they advertise the position, it will be a leave replacement with the possibility of a permanent spot. It is a good time of year to find a new person, at least.
It is with a heavy heart, indeed, that I even speak about leaving my job. I love what I do, and I could not ask for a better place to work. Orchestra programs are somewhat rare to begin with, and mine has been consistently strong. Support for the arts is abundant (which I hope will continue even in the wake of ever-elusive test score improvement). We have a supervisor who fights for us, and my building principal has always been a champion of our programs as well.
I'm good at my job. The students really play, and they develop an appreciation for "art" music as well as the craft and technique of playing an instrument. I was pleased today that several students had, in their little heads, a piece that I had written for them. Are they perfect? Of course not. Do they practice enough? Of course not--as if anyone ever practices enough. Do they drive me crazy, frequently? Indeed they do. But the challenge of working with them and bringing out the best in them is what gets me out of bed at o' dark-thirty every single morning.
My identity is wrapped up in the fact that I am a musician and music teacher. Seeing as how I have not been able to make the time to practice my own instrument, either playing or singing, I haven't felt like much of a musician. Leaving my job, of course, makes me not much of a music teacher either. I'm sure that many moms who stay at home also struggle with identity issues, feeling the need to identify themselves as a person who formerly worked in a certain field, rather than "just" as a mom.
Remember, though, that Musical Daddy stayed home with the boy from the time that he was not quite a month old until the beginning of summer, also the time of his cancer diagnosis. But he only stayed home with The Boy while I worked, in my teaching job. In the afternoons and evenings, he had marching band, private lessons, or chorus. I would say that we were living on one-and-a-half incomes. And he loved being at home with The Boy.
I'm not really the type to enjoy staying home and spending a lot of time on domestic matters. Of course, I try to do my share of housework (when I notice it), and I put food on the table and in the lunchboxes. But...this is going to be a new challenge.
And becoming a permanent fixture in a playgroup is out of the question, because if any child in the group is remotely sick, we can't be there. The library is a possibility, but questionable as well. Grandpa has agreed to meet us a few times a week at the VERY upscale mall, which is halfway between his house and our house, for walks.
I'll find a way to make it work. It should be interesting. Maybe I'll find the time to exercise more. Practice more. Compose more. Publish some music, perhaps.
Let's not get carried away--The Boy does tend to keep one rather busy.
It means that I will be leaving my job. Since the treatment is expected to take two years, that's how long I'll be out of work. I will try to apply for a "leave of absence" just so that I have the option, should I choose, to return to the district and still keep my tenure and my years of service. There is no guarantee that I can even get such a thing. The school board would have to approve it, and while it helps that two board members are parents of some of my favorite orchestra students, I'm not sure if a two year leave is even feasible. I'll find out soon enough
I guess when they advertise the position, it will be a leave replacement with the possibility of a permanent spot. It is a good time of year to find a new person, at least.
It is with a heavy heart, indeed, that I even speak about leaving my job. I love what I do, and I could not ask for a better place to work. Orchestra programs are somewhat rare to begin with, and mine has been consistently strong. Support for the arts is abundant (which I hope will continue even in the wake of ever-elusive test score improvement). We have a supervisor who fights for us, and my building principal has always been a champion of our programs as well.
I'm good at my job. The students really play, and they develop an appreciation for "art" music as well as the craft and technique of playing an instrument. I was pleased today that several students had, in their little heads, a piece that I had written for them. Are they perfect? Of course not. Do they practice enough? Of course not--as if anyone ever practices enough. Do they drive me crazy, frequently? Indeed they do. But the challenge of working with them and bringing out the best in them is what gets me out of bed at o' dark-thirty every single morning.
My identity is wrapped up in the fact that I am a musician and music teacher. Seeing as how I have not been able to make the time to practice my own instrument, either playing or singing, I haven't felt like much of a musician. Leaving my job, of course, makes me not much of a music teacher either. I'm sure that many moms who stay at home also struggle with identity issues, feeling the need to identify themselves as a person who formerly worked in a certain field, rather than "just" as a mom.
Remember, though, that Musical Daddy stayed home with the boy from the time that he was not quite a month old until the beginning of summer, also the time of his cancer diagnosis. But he only stayed home with The Boy while I worked, in my teaching job. In the afternoons and evenings, he had marching band, private lessons, or chorus. I would say that we were living on one-and-a-half incomes. And he loved being at home with The Boy.
I'm not really the type to enjoy staying home and spending a lot of time on domestic matters. Of course, I try to do my share of housework (when I notice it), and I put food on the table and in the lunchboxes. But...this is going to be a new challenge.
And becoming a permanent fixture in a playgroup is out of the question, because if any child in the group is remotely sick, we can't be there. The library is a possibility, but questionable as well. Grandpa has agreed to meet us a few times a week at the VERY upscale mall, which is halfway between his house and our house, for walks.
I'll find a way to make it work. It should be interesting. Maybe I'll find the time to exercise more. Practice more. Compose more. Publish some music, perhaps.
Let's not get carried away--The Boy does tend to keep one rather busy.
Tuesday, November 18, 2008
Bam! Kick it up a notch!
The Boy's chemotherapy regimen is going to change. Radically. Because of the new growth while on treatment, he is going to receive the same treatment as a Wilms Tumor patient who has relapsed. In a way, that is exactly what has happened.
The treatment is expected to take approximately two years and will be predominantly inpatient; three to five days in the hospital, followed by about 2 weeks off in which he will have his blood counts done, and then repeat. Likely, his first inpatient chemo will take place around Thanksgiving.
I will elaborate more on what this all means for our family in a later post, but although the light is visible at the end of the tunnel, it's mighty far away.
The treatment is expected to take approximately two years and will be predominantly inpatient; three to five days in the hospital, followed by about 2 weeks off in which he will have his blood counts done, and then repeat. Likely, his first inpatient chemo will take place around Thanksgiving.
I will elaborate more on what this all means for our family in a later post, but although the light is visible at the end of the tunnel, it's mighty far away.
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