Saturday, September 27, 2008

You dirty rat...

First of all, I am very upset that I feel a cold coming on. I am taking AirBorne and drinking fluids to try and keep it away. I really thought that I was careful at school about washing my hands several times a day and telling the kids to do the same but some little pain has given me a cold.

The other, unrelated story: somehow this boy who went to sleep wearing a shirt and a diaper woke up wearing...a shirt. The diaper was at his feet and there was a big puddle.

You dirty rat...

Thursday, September 25, 2008

I don't think this was what they meant

Starting from the end, The Boy did not get his chemo today. His white counts were too low. This happened last time with the Actinomycin-D as well, and it was pushed from week 6 to week 7. We're on week 12 and he'll get his chemo early next week instead. It's good news, though, only because from Monday to now the counts have improved quite a bit.

One of the problems that we started noticing this week was a diaper rash, really nasty. Ms. R, the babysitter, told me on Tuesday that she found some prescription cream in the diaper bag and had she not, she would have recommended that I get some for him. Today, when I was re-packing the diaper bag to go to the treatment center, I noticed that his EMLA numbing cream was in the front pouch along with the Balmex diaper cream...I'm thinking...I haven't used the EMLA in awhile...uh oh...

The EMLA is the cream that we put on the port so that when the nurse pokes it with the needle to access it, it doesn't hurt so much because it is numb. I called Ms. R and asked her what color the tube was that she had been using and it was, in fact, the yellow and white tube. I told her that we should have been more clear in indicating what was what in there, and that the correct stuff for diaper rash was called Vusion and it comes in a blue and white tube.

The nurses and the oncologist had a good chuckle about it.

And in the meantime, The Boy had numb nuts.

Monday, September 22, 2008

Sad, disappointing...

Today I didn't go to work. Instead, I took The Boy to the center because he had a fever that began yesterday around 11:30. He seemed himself yesterday; today, a little less so. He got fluids and antibiotics while he was there, and they took blood for counts, which wasn't so good. Hemoglobin was okay and platelets were okay, but white counts not so much--basically there are three types of white blood cells, of various stages of maturity. He had a bunch of the new ones and not much else. There were no "bands" in the first sample; later in the day there was one. Whoop-de-doo.

I love The Boy and any extra time we get to hang out is fun--I just wish that we could do it somewhere other than in the hospital.

The complication of the day, causing us to be there for the entire day instead of just a few hours, was he wasn't getting blood return out of his port. Cancer patients and cancer moms/dads probably know what this means, but because I hope that as few people as possible are cancer parents or cancer patients, let me elaborate if I haven't done so already.

The medi-port was installed on the left side of his chest, under the skin, for direct access to the veins. We place a numbing cream on the port area and let it sit there for awhile (we use press n seal; the hospital uses something stickier). The port is "accessed" every time that he goes for chemo and, as I now know, any time that he comes in for anything other than a quick finger-stick for blood counts. IV's go in through the port and most blood is drawn from the port. The accessing part involves sticking a needle in, hence the numbing cream, and flushing it out with saline. During this process, the nurse pushes in saline and pulls out some blood. Hopefully. If the needle isn't in properly, the saline will go in elsewhere (which happened during The Boy's first outpatient visit). If the saline goes in correctly but the blood doesn't come back out, usually there is a clot or an area of tissue (which has a specific name that is escaping me now) that is in the way. Think of it as a no-spill sippy cup.

After they discovered that this was a problem, they first tried to flush with Heparin (anti-clotting medication). Didn't work. The nurses took a second set of blood samples, this time using a vein. THESE people know how to find a vein! I was nervous because of our experience during The Boy's initial admission into the hospital, where the resident must have stabbed David 20 times with the needle before finally giving up and calling the IV team. But anyhow, even though they found a vein today, that didn't take care of the port problem. They had to put another solution in there that was to take 2 hours. It was already 1:00 at this point...hey, what's a few more hours when I've been here since 9:00 AM?

This worked well enough, we eventually got our report, and we went home.

None of this is too sad or disappointing. Actually, it's to be expected to some extent. And I was relieved that The Boy did not need to be admitted to the hospital and was, in fact, able to come back home.

What was disappointing and sad was that right before I arrived at home, I passed by our usual playground haunt and saw the place just bustling with activity. So many kids, many of them close to The Boy's age. And there is just no way, with his white blood cell count being so low, that we're going anywhere near that playground.

Sunday, September 21, 2008

Global Warming?

My students were debating amongst themselves and one of them said that (something) which I can't remember was the cause of global warming.

I responded by saying that disposable diapers cause global warming.

They were puzzled. Finally one of them asked if my son wears disposable diapers, and I said that he did not--he wears washable diapers.

"Washable diapers? Wow! I guess they're coming up with new stuff all the time--what will they think of next?"


Curses--foiled again!

I intended to go to the grocery stores with The Boy this morning. Really I did.

I thought that maybe he'd have a little nap at 9, since he seemed tired (and was up before 6:30 this morning), so that I could hang up the diapers and take a shower, and he'd be all ready to go at 10 or 10:30, and I could be home before 12 with lunch ready by the time Musical Daddy arrived back from work.

No nap at 9:00, so I brought him outside with me. He climbed back inside, which was fine as long as I could see him, and after I was finished, he crawled over to the stairs and climbed both sets! Pretty cool!

Since it was clear that he wasn't going to nap, we took a shower. He still is not so thrilled with the shower. After dressing him and dressing myself (it's 10:00 at this point), he wanted more milk (because he's a booby monster today) and THEN he fell asleep.

Little stinker.

False Advertising

Yesterday was shaping up to be a really nice day with The Boy. The three of us enjoyed breakfast at the diner. Then, after Musical Daddy left for marching band, we romped around and I got tackled.

The Boy napped for a few hours, allowing me to start laundry, and we walked to the cleaners to drop off some shirts. Since it was already almost 2:00 and we hadn't eaten lunch, we picked up a nice turkey sub from the Quik-E-Mart (it's actually the QuickChek know....).

It was a beautiful day outside, so we ate on the front steps. I handed The Boy some of the bread in the sandwich (it was a half sub, cut in half, and I gave him one side of the half) which had turkey and tomatoes and onions on it, and he sat there like a little gentleman and ate the whole thing, one bite at a time. Which really takes a pretty long time for a little guy

Musical Daddy was taking his band to a competition, and it wasn't that far of a drive, so we decided to go check it out. Their step-off was at 4:30, and by the time I got the idea to maybe get moving, it was 3:15.

And The Boy had a poo that was so huge it had actually leaked out the side of his diaper. I can count on one hand the number of times that has happened with the bumGenius diaper, but there it was.

And we wipes. I used the remaining washcloths sprayed with water but it was quite the production to clean up this poopy mess.

Okay...3:40 and we're out the door. I would have preferred to arrive at 4:00 so that I could see them before the performance but that wasn't going to happen. No gas in the car...okay, got gas and now it's about 3:55. I'm rolling down Route 22 and I completely miss my next turn because I guess I'm auto-piloting to work, even though it's Saturday.

Crap.'s 4:05 and I'm heading in the right direction. Now wait a I even remember how to get there? 4:20 and I turn into the bus parking lot, only to be told to go all the way around. 4:27 and I make it into the parking lot to see Musical Daddy's old school, where he taught 4 years ago, leaving the field (they have a very distinctive uniform). And I know that they were on before his current group. Go to the back, get the stroller and...I hear some awful gagging noises and, you guessed it, The Boy was revisiting his sandwich from earlier. No warning, no way to grab something and catch it before it was already too late to save the new carseat, and his nice shirt, from getting puke on them.

I cleaned him up and cleaned the carseat as best I could and left his shirt off for a bit, just in case he wasn't done.

Long story longer...the only shirt that I had for him was a T-shirt that says "My Mom Is Hot" (and thank goodness I didn't get messy because I had nothing to change into) which he eventually wore. We did get there in time to watch the band from the fence where the bands enter and to meet them afterwards.

After having cleaned up poo with no wipes and puke with only a towel and a wipe, and rushing to get there to see the band, with my hair in a do-rag that I had meant to remove after arriving because it was only there to keep my crazy hair under control...the last thing that I felt like was a hot mom. The Boy's shirt lied.

Friday, September 19, 2008

All told, a much better week

Nothing urgent enough to post to the blog, anyway.

This week The Boy was MUCH better health-wise. He ate well, nursed well, and may even be done with his daytime bottle thing (that would be awesome because then I wouldn't have to pump...the freezer stash is very nearly gone). He has been pretty good about drinking water/diluted juice as well.

Good thing, because his hemoglobin was low this week. Not majorly so, but the nurse said that we should keep an eye on him and make sure he gets lots of fluids, and we should call if he has any problems.

This evening, I had every intention of going to Shabbat services. I figured that The Boy and I would nap for an hour or two, have dinner, bath for The Boy, and then go pray. I got the 2-hour nap for myself; The Boy decided to go back to sleep for an additional hour and a half, meaning that he woke up at 7:15. Services are at 8, and he hadn't eaten. Neither had I. I defrosted some meatballs and cooked some rice noodles. BIG hit! I think he ate two whole meatballs. At least...which is a lot for a little guy! Hopefully the iron in that and in the spinach I've been feeding him will help him. But anyhow, you can't get a small child to eat dinner in 5 minutes so that he can get a bath and go to services. He just doesn't get it, nor would I ask him to.

Speaking of spinach and veggies in general, I'm not sure if it's the chemo or the fact that he's been eating so many different foods but he just doesn't inhale the veggies like he used to. I put some tomato sauce on the spinach yesterday and today, and he ate most of it happily. He really seems to enjoy the tomato sauce.

He's just SO sweet. I love his disposition. I love how he smiles at everyone and is starting to become friendly. Yesterday, we went to the playground and there was a little girl, about 10 months, in a stroller (he's twice her size). He was standing up while holding onto her stroller and just smiling at her and trying to interact. He watches the other kids at the playground. I'm excited that he is interested in more things on the the tunnel and the slide. And all of the stairs. But he still LOVES the swings. I have so many pictures on my phone of The Boy laughing his head off on the swings.

Tomorrow we may go see Musical Daddy with his band at a competition. The Boy will surely enjoy it.

Sunday, September 14, 2008

Up and Down, Down and Up

Friday morning was more of the same, so The Boy was eventually brought back to the center. In my panic, I thought that he might be needing a transfusion because the nurse said to put his EMLA cream on (that's the numbing cream that goes on the port before chemo). Fortunately he didn't; he just got some fluids (although my mother said that transfusions made her feel quite a bit better).

He was off of food from Friday lunch (some of which he had "lost" afterwards) until Saturday lunch. We were allowed to give him breakfast but since he had the same dramatic vomiting episode that morning, we opted not to. He did finish more than an entire sippy cup of diluted white grape juice, in addition to nursing every few hours. He had a few bites of lunch and a few bites of dinner, and this morning he seemed to be pretty much back to normal. He had eggs and a few bites of french toast and a few bites of rye toast.

I'm remembering that the last time he had Doxorubicin, the weekend afterwards, he had no appetite. I think that it's the same thing here, as he had Doxorubicin last week.

Right now he is in his crib fighting off a nap--I think that this time he won't fall asleep there like he did on Thursday. It is his normal naptime, though.

Thursday, September 11, 2008

It's all good...(according to the new dictionary)

The Boy was pretty much his normal self today. He ate his breakfast without any fanfare and was his charming self at the center today.

All medical issues that he has go through the oncology center although he is going for his 1 year "well" visit on Tuesday. No vaccines, though, because of his being compromised from the chemo. He'll catch up on his vaccines after he's done.

Anyhow, I told them that The Boy was a little stinker who was just sick so that Mommy would stay home with him and now that Mommy is locked into skipping work today, he can be all better. The doctor said that it was probably just a stomach thing.

They went ahead and did his chemo that was supposed to be tomorrow, causing me to have to reschedule Aunt M.'s visit. I would have just had Aunt M. come back (and I could have gone to work, too) but they had already ordered the chemo and they can't exactly save it.


Next week The Boy has an MRI. Another sedation, too. Hopefully they won't be stupid enough to ask The Boy to drink anything this time. So Aunt M. is probably going to take him. Right before the MRI, he'll be getting his blood counts. It's a week without chemo! Wahoo!!

Wednesday, September 10, 2008

He gives me fever...

The Boy has been getting sick recently, which is, of course, unnerving for us.


Several times now this has happened: we put him in his high chair to eat a meal, and he coughs and coughs, makes these horrible noises that sound like burping and growling, and then pukes up about a teaspoon of...goop. Each time so far that this has happened, he has felt just fine after a quick cleanup and sip of water and has gone on to enjoy a meal. Today apparently he didn't want to eat much (and it had gone the same way as soon as he was strapped in the high chair) and something similar happened at lunchtime although it seemed to have been pasta-related. I was fortunate enough to miss these happenings today.

He also has been pooping differently, especially today. And some of the poop was green which is never a good sign. I do get to see the poop every day because I have to rinse the dipes. Very exciting indeed.


I called the doctor's office and recounted all of this for her. She said that it is likely a bit of gastroenteritis, which is not a big deal (so...really not a big deal? Or not a big deal the way that a Wilms tumor is not a big deal?) but she'd like to see him tomorrow just to be sure.

I knew that we weren't going to escape from this whole to-do without having The Boy experience some symptoms but I guess somewhere in the back of my mind was that little iota of hope that he'd just sail through it all, no problem.

He's still the sweetest little boy ever and I love him to bits.

Oh, and the title is erroneous because he has no fever, but I couldn't think of any other song titles that deal with illness other than Flyleaf's "I'm So Sick" and I'm not the one who is sick thank goodness.

Monday, September 8, 2008

More Play Value; Developmental

I promised my mother that I would write about this; you just don't cross my mother, so I'm going to attempt the blog entry that was much better in my head yesterday even though my mind may be elsewhere. I did an entry about play value this sLinkummer and forgot to post it, so it sort of got lost in the shuffle. Here's the old entry for reference.

My interest today, however, is more about the different developmental uses for toys. A few examples:

The Boy got a toy laptop from Grandma when he was 8 months old. Occasionally, he would hit buttons by accident or bat the thing around a little bit. After a few weeks, we discovered that his favorite thing to do with this toy is to close it. I'd open it and turn it on, and he'd close it up again. This transferred into attempts to close the real laptops--usually a sign that he needs more direct attention.

This also prompted me to buy this Pop-Up Pals toy. It has 5 little doors that he can close just like he does with the laptop. We got a lot of mileage out of just opening the little doors and letting him close them. A few days ago, he actually discovered how to open some of the doors, which was terrifically exciting for everyone.

He has begun to use his walking toys for walking, which we figured that he'd do eventually. He used to just play with the stuff on the toys. One of the toys has buttons that make sounds. And, on the subject of buttons, The Boy holds phones and remotes as if he is texting.

A moderate annoyance about baby toys is that they all seem to have letters or numbers, colors or shapes, and they recite the new information at the touch of a button. I don't expect The Boy to know his colors by 18 months just because he has so many toys to tell him. Nor do I believe that the ABC song will be anything more than the ABC song for a few more years yet. I guess it's nice that all of this information is being thrown his way so that when he's ready to understand it, the toys can reinforce what he is learning.

Might this also be a reflection of our current society? Everyone is so worked up about "Kindergarten Readiness" and everyone knows that if they don't startKindergarten right, they won't pass their standardized testing in second grade but they forget that it's developmental, NOT knowledge-based when they start Kindergarten. I have had a few discussions with family and friends about the need for preschool versus daycare or playgroup for children who are under 5 and the concern that they won't know enough for kindergarten. There is currently no requirement that anyone attend school before first grade; almost everyone starts with kindergarten because the public schools offer it and have enough spots for all students.

By the way...all of you with August babies, especially boys, see what the practice is in your town about your kids starting kindergarten right at their 5th birthday vs. waiting an extra year. Developmentally, it's worth checking into.

Don't know which way this post has gone but I'm done because I don't even understand myself anymore...please feel free to leave a comment about anything that made sense.

Friday, September 5, 2008

Eat it...don't you make me repeat it

But first a quick update on The Boy: long chemo today. Red pee chemo too. My mom took him today and my father-in-law and sister-in-law stopped by as well. Everything was fine with The Boy. They had to collect a urine sample, which is humorous (well not really) because of the collection method. The medicine is count-dependent and his counts were fine.

Today's topic diverts from the constant cancer talk because I've been thinking about it since I peered into the refrigerator this morning. My mother was here for over 2 weeks; my father was here for a week. Love them to pieces and they are amazing with The Boy. Helpful around the house and very willing to accommodate us.

However (and there's always a "however" that would follow such a string of compliments).

Since they have been here for awhile and have also done a portion of the food shopping and cooking, I have less of an idea as to what is in my refrigerator. I don't particularly like not knowing what is in there, how long it has been in there, who made it, who wants it, et cetera. What's worse is when I do have food in there that is supposed to be eaten and it doesn't get eaten. That happens when all of a sudden we go out to eat instead of eating the dinner that is already made.

Not a major deal and I don't think that I get too broken up about it, although I'd rather not waste food. There are also certain things that I don't like to eat as leftovers that Musical Daddy enjoys, like white meat chicken.

Another food management issue is that my mother has this thing in the supermarket where she just picks random stuff and decides that we're buying it. I have stopped going to the supermarket hungry and have found that it makes a big difference; I don't know if having eaten beforehand can remedy this condition in my mother. Perhaps I should just keep her away from the grocery store.

But I can't really do that--she loves the grocery stores here. The prices on kosher food are remarkable.

I'm not thrilled about the amount of junk I've eaten over the past few weeks but I'm not too broken up about that either. Since school is back in session, I feel pretty confident that by eating a healthy breakfast and lunch, I can get a good handle on my eating habits, such that a little more leeway will not make or break our stride.

I am, however, very glad that I made good lunches for The Boy. It's hard to know what to pack for a 1-year-old but he does a pretty good job of eating his meals. He powers through grapes and soybeans, and he delights in pita with hummus. He does okay with chicken and assorted veggies although last night he had steak for dinner and powered through more of it than I did. So much so that there weren't really too many leftovers.

I need to clean out the fridge, though, and take stock of what is in there. If I am careful with my grocery shopping and fridge/freezer inventory, I can cook maybe 3 times a week and have lunch and dinner prepared for that entire week.

I'd be happy to suggest meal options for anyone who is interested in how to feed a health-conscious weightlifting male, a semi-active female with a bottomless pit for a stomach, and a 1-year-old who will eat anything under the sun and has amazing manual dexterity.

Wednesday, September 3, 2008


We have some resolution, for now, with regards to The Boy's treatment status. Starting at the end: he will not be having surgery very soon at all. The surgery will be much later.

In speaking with the new doctor, he reminded us that the tumor in the right kidney is still an unknown. It may be a nephrogenic rest. It may be more Wilms Tumor. Or it could be something else. Given The Boy's good health otherwise, the first two options are more likely. He has to have an MRI soon, just for another look.

Another sedation. Great. But at least the doctor said no more contrast solution. That was such an exercise in futility.

The tumor did respond to chemotherapy and did become more circumscribed, but it didn't really shrink. The doctor wants him to continue his current course and for them to see more response to the chemotherapy. He has Doxorubicin this week. Yay for red pee.

Tuesday, September 2, 2008

Surgery--don't know when (or "like I have two heads")

Someone pulled the idea of "The Boy has surgery on Thursday" from within the depths of their nether regions...because he doesn't. He has an appointment tomorrow at 2:30 with the surgeon, to see what's what. But after that..who knows? Fortunately the treatment center got all of the appropriate materials together and it is being sent to the surgeon to look at before the appointment.

That is COMPLETELY different from what we thought and I've been livid all day. It didn't help that I spent most of my time being talked at today at work (first day..."meetings" and such) and the rest of the time on the phone with a secretary who barely even knew that we were coming and various other characters, all blurred together.

I'm just so worn by all this. I don't know how much more I can take.

Monday, September 1, 2008

workin' in the coal mine goin down down down

Tomorrow I start work. Musical Daddy starts work. We both have teacher days, without students. And The Boy has his first day with Ms. R as well.

It's a decent day for a test drive, as he will likely not go back to her until after his surgery.

We're unsure as to how long they'll keep him in the hospital but eventually we'll get back home and settle into a good weekday routine.

I had to be sure that The Boy had a lunch and snacks packed. Enough diapers. Two bottles out of the freezer stash. His iPod and speakers. His pop-up pals toy.

And now it's bedtime...