Saturday, November 29, 2008

Problem, in the future--need advice

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.


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.

Friday, November 28, 2008


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.

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!

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.

Thursday, November 20, 2008


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.

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.

Monday, November 17, 2008

Vinegar, Breastmilk, and Windex

If you've ever seen My Big Fat Greek Wedding, you'll remember the older gentleman (Grandpa maybe?) who used to fix everything with Windex. Including elbow pain. Windex was THE answer.

Of course, we'd rather not try to fix everything with Windex around here because I've heard that it's not so healthy for babies.

However, you can fix many of your household issues with vinegar. And breastmilk.

Let's play a little game and see if you can guess which liquid solves which problems (by the way--these are all true):

- A few drops as a cure for pink eye

- Put it under your nose if you are going to be in an allergen-heavy situation

- Use it to get rid of crud on pans and double boilers

- Use it to help remove buildup from cloth diapers

- Use it to cure diaper rash

Obviously, items 1, 2, and 5 are breastmilk; items 3 and 4 are vinegar.

Great thing about vinegar is that it is food, and completely non-toxic.

Sunday, November 16, 2008


You should have seen this kid power through his steak yesterday!

We're glad to see him behaving a little more like himself, even if only for a little while.

Thursday, November 13, 2008

Sunshine and Lollipops

It seems to be taking all three of us a lot longer than last time to recover from this surgery and hospitalization. It doesn't help that we picked up a cold somewhere in the hospital. The Boy is, fortunately, healing pretty nicely and returning to his normal self. He is eating meals and snacks pretty well. Unfortunately, he is also so attached to my boobies that I'm getting sore. Owies.

This afternoon, I had a few moments that really solidified my feelings about our whole situation. A little girl, about three years old, was skipping along behind her mother in the supermarket parking lot, looking just as happy and carefree as she could be. A mom walked through the supermarket with her baby girl, maybe 8 months old, doing the whole googly-eyes and faces and such. And I thought, where are my sunshine and lollipops? Maybe life isn't always like that with kids. I know it's not. Even before The Boy's illness, we had our ups and downs with him. Sometimes he drove us crazy. Other times he was so sweet and endearing that we'd grin for hours just because of something silly that he did.

Now that The Boy's illness is a permanent part of who he is and how we relate to him, we can look at our life together in two ways--everything is that much more of a blessing, or we have so many more chores than other parents. We feel both, frequently. The first time that we saw him smile after his surgery, either time, was magical. But those few post-surgery days were SO hard. I pumped milk for 5 days, every 4 hours during the day. It was hard to hold him, and sometimes it was better for him not to be held, because his position made breathing a little problematic.

Spending time going to the hospital (planned or unplanned), the doctor's appointments, waiting for results, taking his temperature and wondering if we'll have to go to the ER, hoping upon hope that he'll keep his meals down, and getting him to take medicine--now far more complex than just the applesauce--is what most of our lives seem to be now. It's hard to focus.

I'm starting to get a little worried about his development. In many areas, he is advanced. Specifically, in his fine motor skills and in some of the ways that he plays, he does a fine job. He knows how to use a spoon and fork although usually his fingers are his preferred dining implement. But he doesn't walk. He doesn't say any words other than "mama" and very rarely "dada." He has a checkup with his pediatrician next month, at which point we can discuss some of his milestones and whether we should truly be concerned.

We just hope that we're getting close to the end of this cancer crap and he'll be done forever with it. Of course, he won't really, because he'll have frequent scans to make sure that none of this stuff comes back. A little something hanging over our heads, and his head once he is old enough to understand, for the rest of our lives.

It has to be worth it. He's too beautiful. He's precious.

Tuesday, November 11, 2008

Be it ever so humble...

Since I went to work today, I didn't get to update throughout the day but...WE'RE HOME!!!!!!!

Musical Daddy gave me nothing but good news today, and at about 3:00 he told me that The Boy was being discharged. I drove down to pick them up after I finished with my rehearsal. We got ourselves ready to go, and away we went.

Lots of car time logged today, but certainly worth it.

Here's a cross-reference to Musical Daddy because he has both the good pathology news and cute pics of The Boy.

Monday, November 10, 2008

And away troubles go down the drain...

More accurately, they removed the JP Drain this afternoon. It was a fairly agonizing process, especially considering that The Boy's skin had healed over the stitch a little bit. Once the doctor finally got a good grip on it, he then had to pull the thing out. It was about a foot of tubing that was still inside of his body that we didn't see, in addition to the thing with the bulb at the end that we did see. The tube then widened at the end and was about 1/2 inch long, coming out of the little tiny hole where the tube had been resting. We're glad that thing is out and I'm sure that The Boy is as well.

I'm also glad that he has become reacquainted with the art of thumb-sucking. Once he was done screaming his head off and trying to bite down on anything that he could just to take away the pain from the drain removal, he calmed down, took his thumb in his mouth, and went to sleep.

Our friend from the Chai Lifeline foundation brought The Boy some toys, and we were thrilled to see him focus on a shape-matching toy because he hadn't done much in the way of playing since before the surgery. Maybe a bit of cup-clicking in place, but that's about it. This toy is a soft box, about 9 inches length/width/height, with circular, square, and triangular cutouts for the hard and soft shapes that matched. He was remarkably good at matching the shapes to the holes!

But back on the drain issue...the pain team had said that the fewer tubes and devices that a person has, the fewer his pain management needs are. Many people stop asking for pain drugs once the stupid NG tube is out.

I didn't realize how huge the JP drain was--I would have been pretty ticked off if something like that were hanging around inside my guts.

And you were going to tell us this when?

One of the nurse-practitioners from surgery came in to see David. She took a look at the JP Drain and said the same sort of thing that's been said for days--want to see how it's doing and then think about taking it out.

It looks irritated and if it's not infected yet, it very well could be soon. Not that I'm a doctor.

She then asked what our follow-up plans were with oncology. I said that we'd have to wait for pathology before deciding what to do next. "Oh, it's ready, I can print that out for you right now."

Excuse me?

The pathology is ready and you didn't bother to tell us?

She backpedaled and said that it must have only recently become available and explained that it takes about 72 hours to finish. Do the math, kids--that's 3 days. So, Friday night. Maybe I can accept that since it was the weekend and now it's Monday, it may have taken longer. BUT if she knew that the pathology was back, shouldn't that be one of the first things that she tells us?

Sunday, November 9, 2008


The Boy was excited to eat some food. Unfortunately, his stomach didn't share his enthusiasm. Ew.

He had an ultrasound done on his testicles. That's right. And, believe it or not, he was pretty still for the whole thing. He was lying on his back on top of me, just chillin' there. No problem at all. The reason for the ultrasound was that the fluids from the IV cause some swelling in there. But...they just wanted to be sure that all it was, was fluid and not some other problem.

That's all we need--nut problems, on top of everything else.

He also still has his JP drain in there, and we had the surgical resident examine that area, as well as taking a look at his stomach, which seems to be rather distended. We have some recent photos of The Boy in which his bare belly is visible, and it is pretty flat most of the time.

Hopefully that issue will also resolve itself. No more food, for now, but nursing and clears are still okay.

But, some good news

The Boy did eat a few Cheerios and drank a bit of juice, too. He hasn't yet nursed since this morning, when he brought up all that milk. The Cheerios and juice stayed down.

Come Wednesday...

It looks like Wednesday is the day that we'll be getting out of here, simply because everything takes that long.

One of the surgical residents came up because I had asked about The Boy's JP drain (Jackson-Pratt drain; it's a bulb on a tube that is inserted to help fluid drain away) because the area around it was looking red and possibly infected. They are taking the drain out today. I asked him, straight out, when The Boy would get to leave and what they are looking for before talking about discharge. He said that the tubes and lines have to be out (well of course, goofy) and that they had scheduled a renal ultrasound for Tuesday because they always check on it a week after surgery.

Would have been nice to tell us, straight out, that we'd be here for a week and then some, instead of just having us sit here wondering.

Last time the wait was also unbearable, because they wanted to get pathology back on the tumor before he could be discharged, because he was also to have his first chemotherapy treatment inpatient. But I felt like they were more up front with us. They said that The Boy looked good, and The Boy was eating normally at that point, at least, and it was just a matter of hanging out with him in the hospital during the day. He'd just get his Norvasc twice a day and get vitals done from time to time, and still have his diapers weighed.

Was it because The Boy doesn't normally receive care here, or is this how everyone gets treated? It seems like every time we turn around, there's something that they just don't bother to tell us.

Musical Daddy will go to work on Monday; I'll go to work on Tuesday. Then, assuming that Wednesday is actually when we'll be out of here, we'll both be here on Wednesday.

Get me out of here...

We are SO restless, The Boy and I. We have to get out of here.

I am annoyed with the casual attitude that the doctors seem to have about the progression of The Boy's treatment. He seems to be getting better, kind of...but how would they know it if they never see him? The surgery docs stopped by to see him early in the morning yesterday and early this morning (woke me up pretty harshly, too, by shaking my leg repeatedly). That's a mighty long time, IMO. They didn't return any calls regarding when he could eat until FAR later than they should have. The Wilms Tumor email group was confused as to why he wasn't allowed to nurse.

The nephrologists came in. They had nothing new to say, really, just that they think that the additional blood pressure medicine is working. The urology team came in. The Boy has that same testicular swelling that he got during another hospital stay, from having too much fluid. They mentioned that they wanted to do an ultrasound...still waiting on that, too.

I hate how someone says that they're going to do something, and then they don't, and then I ask about it, and the nurse says "oh, they're just putting the order in right now" which says to me that they forgot.

He is currently allowed to eat but hasn't done so yet. He nursed last night, just a bit at a time. Then this morning he nursed enthusiastically but brought it all back up. Hopefully he'll try again later and keep it down. I'll also offer him some noodles, which he loves.

Saturday, November 8, 2008


The Boy got the all-clear to start nursing. He didn't have much--just a bit at 6:20 and a bit at 7:20. I offered again at 8:20, but it seemed as though he had too much gas in his stomach to be able to tolerate it. He had several truly disgusting burps, where we thought that he'd throw up but he didn't.

Speaking of disgusting, The Boy started pooping in earnest. He had 3 little poos, and then 3 BIG poos. They were THE most disgusting intestinal productions that I've ever smelled. Worse than the meconium at birth. Worse than his first poos after the last surgery. Nonetheless, we were so glad for him because it meant that his bowels were really waking up. We'll still have to wait awhile for steak and broccoli, though.

Many of the nurses down here in this unit have been pretty helpful and attentive; not so this afternoon, and the jury is still out on the night nurse. I'm pretty ticked off, as well, about the fact that it took SO long to get back in touch with surgery to have them tell us that he was able to nurse. They really should have told us something right away when they saw him in the morning, like "once he has big poo" or "8 hours after the NG suction comes out" or even "we'll check on him later today" and actually mean it.

New annoyance: The Boy is on the monitors, and pretty much every time he moves, his heart rate jumps up, setting off an alarm. SO annoying! We now know what button to press to shut it up for awhile, but sometimes it takes awhile for anyone to respond.

Heaven forbid he actually has some sort of cardiac episode--with the swiftness that we've experienced today...well...I'd rather not go there.

Did someone screw up?

Good news: today The Boy had his NG tube removed, so his handsome face is unobstructed by tubes and tape. I'd imagine that he probably feels more comfortable without it in there, but if his stomach starts to distend or if he throws up gut-sewage again, it will probably go right back in.

Here's the first possible screwup: The Boy had the NG tube on suction when he came into the ICU from surgery on Tuesday. On Wednesday morning, the NG tube was taken off suction and was just...sitting there. By Wednesday night, he was throwing up gut-sewage every few hours. FINALLY the nurse put him back on suction on Thursday afternoon, saying that she'd just do it and then check orders. When he was moved out of ICU, it was disconnected again and not hooked back up. Up came more gut-sewage the next morning.

Thing is, I wonder if, had they kept him on the suction continuously through Tuesday and Wednesday, maybe Thursday too, that he'd have been off of the suction by Thursday night or Friday and been nursing by yesterday or today. As it is, last night he was terrifically miserable because he was awake enough and well enough to be hungry and pawing at my shirt, and screaming hysterically. He was medicated a few times over the course of the evening, even though he may or may not have been in pain. And I hate giving him medication when something else will work better...but he wasn't ready to nurse yet because the NG tube was still in there and still sucking stuff out.

Next thing: the original pain management plan was to use an epidural. Just like the kind that some women scream for while in labor. It sounded fine at the time, but once he came out of surgery, it was apparent that the incision ended up being too high to control the pain by means of the epidural. They left it in for far longer than it needed to be, and the first night after surgery, it took almost 2 hours from the time that the cartridge ran out until the time that it was replaced. So we had something in his spine for a long time even though it didn't seem to be doing anything. I've never had an epidural, but I've heard several people complain about headaches from having had them, and I wouldn't be shocked if The Boy had a headache in addition to all the other crap in his life this week.

They switched him to the morphine drip anyway, which he probably should have been on in the first place. Problem with morphine is that it slows down the recovery process in that the bowels stay sleeping. It's a tough balance.

I'm going to reiterate something I said earlier on a message board and got chewed out about by someone who either doesn't understand or is just too stupid to remember what it feels like: There are no emergencies in the hospital. The Boy sets off his monitors every time he cries, and you'd think that someone would come in to check on him. Sometimes they do; sometimes they don't. If it weren't for the fact that Musical Daddy and I are so on top of his care and so knowledgable about what's going on with him, I can't even imagine what would be going on.

Friday, November 7, 2008

Doing his civic duty

Maybe should be spelled differently...but we finally got some poo from The Boy! Hopefully it's enough and The Boy can start nursing tomorrow and eating tomorrow evening.

Currently, he is on IV nutrition. It feels like that's a step backwards, because were he able to nurse or eat, obviously there would be no need for it. It's just that he hasn't had anything to eat since Monday morning and hasn't had any liquids to drink since Tuesday morning, and we certainly don't want him losing weight. I'm glad, by the way, that during his previous chemo-related illnesses and hospital stays, he hasn't lost weight.

I'm a little scared, on his behalf, that stopping the NG tube and suction will cause him to puke more green stuff. That was probably one of the more disgusting things we've seen.

Another strange milestone:

They removed The Boy's foley catheter at about 2:00, and when I changed his diaper at 4:00, there was no fluid output. Fortunately, at 5:00, his diaper was 50 grams heavier than it had been, so it means that he can pee on his own!

Couch Tater

This is a picture of The Boy yesterday, sitting up for the first time in the ICU and getting ready for transfer down to the "regular" inpatient floor.

He is still not so interested in playing, and he's been watching TV all day, pretty much. Watching Goodnight Moon all day, to be precise. Right now we're watching "Word Girl" on PBS Kids.

This photo is in his new room, with some toys in front of him. The nose tape has been changed and looks a little less freaky. He has since had several tubes and devices removed--the morphine is gone, the foley catheter is gone, and the monitors are off for now. He will get the monitors put back on temporarily should he require a morphine shot, but he doesn't seem to be in majorly agonizing pain, just some discomfort.

We are still waiting for some poo. Until there is poo, he doesn't get to eat. Which means I will still be pumping. I have a huge bin in the fridge. Technically, I don't have to pump as often as I have been, because it is likely that once The Boy is ready to resume nursing, it won't take long to return to my normal supply, but I'd rather not risk it. It is unlikely that we'll really need all of this milk, but then again, I'll probably send a bottle or two with The Boy for the next few weeks as he continues his recovery.

Until he poos, and then is able to eat, we don't leave.

Come on, poop!

DVD Review: Goodnight Moon

Many parents are familiar with Margaret Wise-Brown's story about a little bunny going to bed and saying goodnight to everything in his room. The HBO special, Goodnight Moon, from the late 1990's is about half an hour long and includes a few other stories and songs, as well as several children discussing their dreams and nighttime rituals.

An all-star cast enhances this already brilliantly crafted program--Susan Sarandon reads the title story, and there are performances by Tony Bennett, Lauryn Hill, Patti LaBelle, and more. That said, the real stars in this program are clearly the children. They are "real" children, not actors, from different schools, religious organizations, and other groups including Rainbows, which is a support group for children who are dealing with the loss of a close relative.

From beginning to end, the children are simply captivating. Their delivery is genuine. The subject matter, while not completely serious, is well-thought out.

One of our favorite parts of the program is when two boys, one right after the other, try to tell people that monsters are not real and that there is nothing to fear. "They just do that to make television shows, like Godzilla! There's no such thing as a huge lizard that goes around and steps on everything" followed by a little guy with an endearing speech problem in which can't say his R's yet "If you have a toy that's really scary, and it comes to life in your dreams, you have to stand up to it. That toy isn't even real! You've gotta tell yourself, 'that toy isn't real. that toy isn't real.'"

The children are very intelligent. One little girl describes what a lullaby should be, and has written her own lullaby. Another girl narrates a very vivid dream that she had about the Beatles. A boy instructs us that "if we didn't have dreams, we wouldn't be able to notify our minds into wonderful things or horrible things...while we're sleeping."

The majority of the children seem to be about 6 or 7 years old, with some being a little older, and a few a little younger.

In terms of areas that need improvement...I cannot think of any! The program is great. It even stands up to about 20 viewings during this hospital stay with The Boy, and then some, without being annoying. I still look forward to the part where a little boy says, "If you have a bad dream and you're scared, you just squeeze your teddy bear and then you'll feel better."

Everyone--buy this movie for your kids. I'd say that children up to age 8 would enjoy the movie, no question, and older children would like it without admitting it.

Thursday, November 6, 2008

New Room!

The Boy has been moved from the ICU to his new room. It means more space and a more comfortable setting. There is a couch in the room as well as space for the airbed, so it is likely that both Mom and I will stay here tonight.

We've watched Goodnight Moon so many times today. I'm really not sick of it--it's a very cute DVD and I highly recommend it. In fact, I'm going to write a review. Haven't written one in awhile.

We're thrilled to be in the new room because it means that The Boy is getting better, and it's SO much more comfortable.

Striking the balance

We are waiting for a bed to become available in surgery recovery, but as soon as one is available, that's where we'll be going.

The Boy has had issues with throwing up stomach acid and bile. It's really disgusting. He has an NG tube, but for awhile it was just venting instead of being suctioned. Problem was, it built up and he kept bringing it up, so the nurse turned on the suction again and confirmed with surgery that it was fine to do that.

Here's the problem: the pain medication slows down the bowel's return to normalcy. However, pain is bad, and it hurts, so the pain medication is necessary. Until his stomach works, he has to have the NG tube in there. However, the NG tube itself probably feels pretty horrible. The doctor from the pain team explained, further, that many times, patients' pain med requirements decrease once they are able to get the NG tube removed. They turned down the pain meds this morning, and he hasn't had pain issues so much as stomach problems.

Furthermore, we want to get him off of the pain medication as soon as we can, so that he can start to return to normal.

Movin' on up

The Boy had a better night last night in terms of pain. Hopefully he's just getting better. They are turning down the drugs a little more, and he hasn't had a "rescue" dose of morphine since yesterday evening.

There is talk about us moving to the surgery recovery area, in lieu of the ICU, today. That's good news, because it means more space in a private room.

Grandma stayed over last night; Musical Daddy and I stayed at the apartment. Both of us got a good amount of sleep.

Wednesday, November 5, 2008

Give me something for the pain...

He's been in more pain. He was on continuous morphine, and he recently got valium to calm him down a bit; better that than more morphine, because we want his morphine dosage to decrease, not increase.

They had given him an epidural, which didn't do much good, as the incision was higher than where the epidural could really offer any relief. We did get to hold him today; unfortunately, his position wasn't so favorable, so he has to stay in the crib for now.

This is pretty crappy but he'll get better soon.

Morning--post-surgery day 1

My mother and I slept last night at the Chai Lifeline Apartment, actually getting some decent rest. Musical Daddy said that there were some pain management issues with The Boy during the night. And by "pain management issues" he meant that The Boy spent quite a bit of time in agony.

We have a feeling that this time around with healing will be more complex than recuperation from the last surgery.

He has a new scar, of course, this one running down the center of his stomach. Welcome to the Zipper Club, boy.

Tuesday, November 4, 2008

Surgery is DONE!!!!!

The Boy is out of surgery and still asleep. They removed the new tumor growth, which was a few inches in diameter, after only having been seen a month ago. They also removed the little tumor from the right kidney. There is something in his kidney that they put in so that it would continue to drain more.

He will be taken to ICU for the night, at least.

SO glad that it's over. We'll continue to update on his recovery and the pathology.

Still in there...

The Boy is still in there. So far, everything has been going as expected. A nurse comes out to give updates every hour or so. There is also a board that looks like a flight schedule, on which the patient's medical record number and status are posted. If his name is in green, he is still in surgery. Which he is.

The Boy is in surgery


Fortunately, our 10:30 assigned arrival time was pretty spot-on. They brought us into the little room for surgery preparations. Doctors and nurses came to see us when they were supposed to.

The Boy received Tylenol and a "happy juice" kind of drug, to relax him and make him a bit floppy.

The only little hitch was when a fire alarm went off somewhere else in the building, and no procedures could continue until the light stopped flashing, which was an extra 20 minutes or so.

Probably 3 or 4 hours of surgery.

Mommy--I'm hungry!

That's where we are. For once, we arrived early to the hospital. Unfortunately, that means more time sitting around and waiting for The Boy to be taken to his next location.

He's hungry. He hasn't had a solid meal since breakfast yesterday, at about 6:30. He nursed and had juice and broth yesterday. Last milk was at 7:15 before we left, and with nothing substantial in his stomach, it means that he is not a happy boy. It also means that he won't tolerate being held by me, because he just starts crying and pawing at me, because he wants his milk!

We are awaiting the arrival of The Boy's cheering section--my mother, and Musical Daddy's father and brother. We will both be updating throughout the day--stay tuned.

Monday, November 3, 2008

Let's do this (wolf! wolf!)

Surgery is really going to happen tomorrow. The Boy's numbers were good and he's feeling better. I was especially pleased that his hemoglobin and platelets had improved so much, even from Friday night. He had been on neupogen shots since Wednesday, but those are only to jump-start white blood cell growth.

I really hope that nothing gets messed up.

I'm annoyed by the fact that we had no way to find out the exact arrival time until sometime between 3:30-6:00 today for tomorrow's surgery. I am even more annoyed, on The Boy's behalf, that the arrival time is 10:30. That means that he doesn't have the surgery until, at the very least, 12:00. More like 2:00, probably.

Not sure if I mentioned this, but the surgeon instructed us to have The Boy on a clear liquid diet for the entire day before. Which, fortunately, includes breastmilk. They conceded that he could have breakfast, because we eat early. But he will have had nothing substantial to eat for probably 30 hours when he is getting ready to go in for surgery. Had we known, he would have at least had brunch today. Maybe even elevenses. I can't even imagine how miserable he'd be if he weren't nursing.

I'm looking forward to this being over. Not because we'll necessarily have less time left of David being on treatment, as the results of this surgery will likely yield more problems and stronger poison, but because hopefully it means no more trips to Philadelphia.

Saturday, November 1, 2008

Just Visiting

Another ER visit, although fortunately it was just that--a visit. We arrived at about 9:00 PM and left at about 1:30 AM. Although we had been told to go a little earlier, we wanted to be sure that we were prepared for a longer stay, as our last 2 ER visits have resulted in admissions. Dinner was in the oven, and we wanted it to finish cooking so that Musical Daddy and I would have something to eat. Diapers were in the wash, and we wanted to be sure that The Boy had something to put on his bum.

With the rashes that he gets anyway from spending time in the hospital, with all the IV fluids and such, it almost seems pointless to use our cloth dipes instead of just taking the Pampers that they give us, but the Pampers smell SO bad that they turn my stomach (and that's before they have been on a baby), and I wonder what his rash might be like if he were not wearing his normal cloth underthings.

His ANC (absolute neutrophil count; the mature white blood cells) was high enough that they didn't need to admit him for the fever, and the fever seemed to be coming down anyway.

This morning, he seems to be much more like himself. He slept late (thank goodness) and was tackling us awake. He doesn't feel feverish. He hasn't eaten yet, just nursed; perhaps we'll try him with some lunch.