Sunday, March 28, 2010

To do tomorrow:

Finish cleaning out hametz (non-Passover food). This includes giving a bag of non-perishables to my father-in-law to take to the church where Musical Daddy used to sing.

Side note: with Easter also coming up, I do think about that church and how nice everyone was, and what a fun time I had singing with them.

Also to do: pack! The boys' stuff is packed, husband's is as well, mostly. I haven't started mine.

Any last items to buy or get rid of, my sister and I will handle.

Yes, my sister came to visit! Not the one who lives here. The one who lives in MD.

I want to leave in the evening; Daddy prefers to spend more time at home, leaving the following morning or afternoon. I can certainly understand; I just want the boys to have the best time. With The Boy not needing counts, we have the freedom to leave whenever.

Of course, we are still grateful to have him out of the hospital.

We had fun fun and more fun today!!! Lots of playing, and great meals for everyone.

Friday, March 26, 2010

Going home!

The Boy is being discharged! Urine samples were normal. They think that he is fine and, obviously, we'll call again if he isn't.


Very excited for Passover in Harrisburg!

Read the following statement two ways:

The statement is, "I was just going to do that."

First, read it as though you are in a good mood and in agreement with a request. Someone instructs you to do something relatively routine which you were just getting ready to do, but the request comes before you actually complete the task. You are non-confrontational and friendly.

"I was just going to do that."

Next, read it as though you are annoyed by the fact that you were on your way to do something and you felt nagged by the person requesting that you do it. Or, perhaps, you knew that you were supposed to do it, but forgot, and upon being reminded, you get upset about it.

"I was just going to do that."

Upon entering the 7th floor playroom, the assistant in there immediately reminded us to wash our hands. She was so quick to remind us that I hadn't had a chance to do it yet. I responded positively with the first inflection of the statement (see above). I feel better about this playroom because of that. Hopefully that policy prevails all the time and throughout the hospital. I have a feeling that it does! Thus, I feel better about The Boy spending time in the playrooms.

The Boy is doing well today. One of the oncologists examined him and noticed that there was a healed-up sore which might have been causing his pee problems. His most recent urine test was fine. There was an amount of protein in the urine that was around the normal limits.

He is off the fluids. He is eating and drinking with no problem. They want to see how he does without the fluids and, assuming that everything else is okay, they may go ahead and discharge him tomorrow!!

Oh, and I forgot to mention: when his primary oncologist came in to see him at the clinic yesterday, The Boy said, loud and clear, "Hi, Dr. Graves!" It was adorable.

His former doctor would be very jealous. Sure, it's a developmental thing, but even so, it seemed as though he just knew, and then he would pick up the "going home" cues. The Boy would give her the cold shoulder until she'd tell him that it was time to go home. Then, perhaps, she'd get a bye-bye from him or he'd blow kisses.

One of the problems with being on a different floor is having a different nursing staff. Not a big deal, but we're still working on getting to know the staff on 9B.

Of course, The Boy is already kind of a big deal around here!

Thursday, March 25, 2010

Not sure what to think about this admission

So the way that this all went down was as follows (a warning that this is a graphic medical description):

The Boy needed to go to the lab for his bloodwork instead of having the nurse come, because of the cold agglutinin. We knew that. It was in the plans.

I had also mentioned that The Boy had been suffering from diarrhea. We quickly ceased giving him milk to drink. No more "pink milk" for him (he had strawberry milk one time, so we bought strawberry syrup and mixed in a few drops). And no more Eat n Park milkshakes (he's only had one)...sigh...

Naturally, with diarrhea comes rashes, and when things didn't look right, we thought that it was as a result of the poo. Everything comes down to poo.

Sitting in the clinic office was when, upon indicating that there was a bleeding issue, that The Boy demonstrated what the problem was by oozing blood from his urethra. Generally speaking, that's not a good thing. They wanted to put a bag on for urine collection and I thought, fabulous, we'll be here all day. His previous diaper was dry, so we lucked out and got the urine sample in a matter of minutes.

Of course, the way I was able to tell that he had gone was the painful vocalization as he went, confirming that poo isn't really the problem.

As I was about to explain everything above in the previous blog entry, they came in to tell us that The Boy was being admitted.

So, as things stand, The Boy is having a terribly painful time with urination. We are unclear as to what is actually wrong, but they are running tests (naturally). Suspected causes of this problem are as follows:

A rash that has dried and cracked. Some poo caused an infection in there. Some other form of urinary tract infection. Kidney stones. Bladder bleeding from the Cyclophosphamide.

We don't know, and we won't know for at least a little bit.

my plans to attend my aunt's wedding are no more. Should The Boy actually be discharged in time, we'll still go to Harrisburg for Passover.

bodily function suspicions

Bad mommy: I tried to get The Boy to drink cow's milk just because WIC gives us a whole bunch of it and we didn't get anything signed yet for him to drink something else.

Working backwards: The Boy is being admitted. He has bleeding which might be from his bladder.

More updates later.

Monday, March 22, 2010

For naught

We went to the clinic today for Flashes of Hope photos and what we thought would be a pre-admission checkup. We put the boys in suits. They looked adorable. The photos didn't work out so well, because The Boy was tired and Meatball wasn't so in the mood. Timing is everything.

We then learned that The Boy's appointment today was supposed to be cancelled and that they weren't even going to try admitting him. Thinking about it, any consternation at the thought of not being admitted soon enough comes from our experiences in New Jersey, where so much more depending on staying on schedule. The doctor apologized for not letting us know about that.

Nevertheless, since we were there, he talked to us about what had been going on with the oddities in the lab. It wasn't the fault of the nurse who drew the blood, nor was it her equipment, and neither was it a problem with the lab itself. Instead, it is an issue with cold agglutinins in his blood. The doctor said that while this isn't terribly common, he produced this as a result of having some sort of infection. He didn't have anything serious, because we didn't notice it except for some runny-nosed-ness. But even so, it caused antibodies to be produced that cause his blood to congeal at room temperature.


Thursday, we go back to the clinic for his next count check. They can check for cold agglutinins as they test his blood.

Wednesday is the blood drive. Now, The Boy will be able to make appearances.

Friday, we leave for Philadelphia. My aunt is getting married. The Boy was supposed to stay back for counts; now we don't know what we're doing. From there, we're going to Harrisburg for Passover.

Chemo is now scheduled to start right after the Passover seders.

Saturday, March 20, 2010

Big "ifs" and big things

Yesterday's lab visit revealed that The Boy needed reds and platelets, so it was back to the hospital for him and Grandma.

From our previous experiences, The Boy was usually NOT up to 100,000 platelets 3 days after being so low as to need a transfusion. But then again, who knows--he has doubled his platelet count in a day before (although going from 30 to 60 isn't THAT impressive).

As we have said, his oncologist is watching this whole process very closely. Because The Boy has received only half of his doses this past cycle, and less than that for the one before, the oncologist is suspicious about his ability to both tolerate and benefit from much more of the treatment. On the other hand, if The Boy does recover in time to start chemo #18 on Monday, then we talk about upping the dosage.

The kidney is a factor, of course, and an additional GFR will reveal what the trend actually is with regards to kidney function.

In other news, much more exciting news, the swingset is here! Last week, our friend Dave, who is the contractor that did the work on this house after the fire (yes, remember that while we were starting relapse treatment for The Boy back in 2008, Grandma and Grandpa were putting their home back together after a nasty kitchen fire) drove to our old house to get the swingset. He put it up here at Grandma's house; The Boy hasn't seen it yet but will be excited, I'm sure! Dave reports that the new owners are nice people. He's retired military, just like Dave, so they had plenty to talk about.

Today should be a fun day. The weather is supposed to be nice.

I can't believe that it is almost 11:30.

Friday, March 19, 2010

Feelin' busy part 2

I am working today, although I am currently home. I lucked into subbing for a teacher who has prep and then lunch, and I figured that I'd just head home for that since the school is 5 minutes from home. No problem. And if there is...oh well, I'm a sub.

So far I have taught three classes. Two of the classes were good; one class less so. This school is pretty nice; our kids would go there if we didn't apply to send them anywhere else, were we still living here or in this neighborhood. Pittsburgh Public Schools is very school-choice dominated, where there are special programs in many of the schools that cause people to pick schools, so children are not necessarily locked into attending a school just because they live in the neighborhood.

Oh, and by the way, living in the city of Pittsburgh and going to Pittsburgh Public Schools nets a nice college scholarship. Nice little incentive for those on the fence about sending kids to public school here or not.


Aunt Jeanne is here today, and we knew that, which was another reason why I was able to take this substitute job today. Complicating matters was an additional screwup by the lab at the hospital, causing The Boy to need to go in for labs again. Thank you, Grandma.

Musical Daddy is adjusting to his new job. He will probably take the bus to work most of the time, as he is working downtown and it isn't difficult to do. I think he'll grow to like that, as he is able to read while travelling or even do his work. I don't necessarily recommend sleeping on the bus, but he certainly could if he wanted to.

Next week is likely to be a chemo week, with an admission on Monday, then a GFR test, and then chemo Tuesday, Wednesday, and Thursday. Likely, Musical Daddy will spend most of the nights there and be met in the morning so that he can get on the bus and go to work (fortunately, the bus runs right by the hospital). Grandma will probably do a night. I might even try doing a night in the hospital, since Meatball is sleeping more and more at night. Two nights in a row he slept from 7 to 7. Last night he slept from 8:30 to 3:30 and then back to bed until 7. So...I might be able to stay with The Boy, or I might not. We'll see what the trend is over the next few days.

Last night we had a wonderful time, with visitors. Precisely, visitors who had new babies! It wasn't that long ago that Meatball was a new baby. Now he is a big boy who never met a piece of meat he didn't like. My children weren't all that interested in the babies. Nothing personal.

Tonight and tomorrow night I have a concert. Sunday afternoon is a birthday party--a friend of ours has a little guy who is turning 1!!

Then back into the know...

Wednesday, March 17, 2010

I feel busy...

With Daddy going back to work full-time, I'm back on SAHM duty. For the most part. Grandma said that if I got called to sub somewhere good, either for a friend or in a music job, I may be able to do it. I happen to be working on Friday.

I am excited for him. If ever there were a place to see if teaching math is something that he can tolerate, this is it. It is a wonderful school with students who are, in general, a lot more motivated and interested than is typically found. I'm a bit biased, as it is the program where I spent grades 7 through 12 (I regret not spending grade 6 there. My therapist at the time was fine with it).

He has more to say about his feelings regarding the job. It is 8th grade math at the performing arts 6-12 school. The building itself is quite new. The facilities are incredible (although all he requires is a classroom, which he gets).

And if he doesn't particularly enjoy it...well, welcome to the world of going to work just to work and finding meaning in your life elsewhere. Raise your hand if you have a passion for the work that you do. Some people do and some people don't. He loves to teach, although he has not developed a passion for teaching math, at least not yet. Meaning that he's better off than many people.

I get to spend plenty of time with just my boys tomorrow. I do enjoy them, and it's interesting because they actually interact with each other. Meatball will crawl around trying to get The Boy; The Boy will lean down and gently "bonk" head with Meatball and even say "Meatball bonk!" The Boy will say "Look Meatball! Blue!" and show him colors, or do the same with letters and numbers.

I'm not crazy about the amount of passing by that Musical Daddy and I end up doing. Right now, for example, I'm blogging up here and he's playing his game downstairs. I would sit with him except that I'm worried about The Boy waking up. Right now it's just so important that he get sleep.

I might get up, though, because I'm in the middle of doing my sister's laundry. Lest you think I'm Cinderella or something, my sister was gracious enough to spend a few hours with the boys and Grandma, helping out, while I was out. In return, I agreed to do her laundry and let her go home (she has no laundry facilities and comes here to do it anyway) to do work and rest. I love my sisters very much and would gladly help any of them in whatever way I can, especially considering how good they all are to me.

The Boy had a physical therapy evaluation at the Children's Institute today. It was fun, and he was good. My mother works there an hour a day, so we saw her friends there. He does qualify for services, still. He does pretty well physically, but he is still behind and is still demonstrating that he is short on strength in his legs. Little things like still using his hands to stand up from the floor, taking steps on all fours, and holding onto something in order to step over even the shortest obstacle. Also, he is still unable to jump. He knows what is involved but just can't get off the ground yet.

Soon, though.

Last night, Meatball slept from 7PM to 7AM with no wakeups. I'm not optimistic about it happening again, as I do hear him stirring...

Tuesday, March 16, 2010

So this is why...

my blog has been so neglected.

We have been making the effort with The Boy to get him to bed at a reasonable hour and not have him watching TV after a certain hour. Instead, it is books in bed.

Problem is, he still needs someone with him, in general, and we haven't really been doing the sneak-away thing yet. By the time he is in bed and ready for sleep...I decide that it's not such a bad idea to get in bed myself.

So, in the world of Meatball: Crawling has been great, and he has also enjoyed standing at the low tables to play with things. He "cruises" a little bit, chasing objects as we move them, but mostly his preferred method of getting from one place to the other is to crawl. Or be carried. He is also starting to reach for people and crawl up on people's legs to let them know that he chooses THEM to carry his cute little behind around.

He has continued to enjoy a wide variety of foods. He had black beans and rice today, and he also polished off quite a bit of Grandma's steak. He nurses pretty often still but he is clearly getting a good chunk of his dietary needs met at the table. I think we'll go past a year but I don't know if he'll make it to 2 years. Whatever he wants.

The Boy has experienced another cycle of chemo without a major drop in white blood cells. At no point, last time or this time, have we felt that he was in major danger from having no immunity. As such, we have spent a LOT of time at The Blue Slide Park because the weather has been lovely.

It's interesting to see him playing...he gets into it more and has been exploring different parts of the park. Occasionally he'll pick another little friend to chase around. Generally if it is a kid his own age, he has a hard time keeping up, but he manages. Musical Daddy reminded me that while we can swoop in to help should The Boy really need it, he should also be able to work out his issues with other kids and realize that they're just walking around him and stepping over him and they're getting 3 turns on the slide before he even makes it for 1, so he needs to get moving. And he needs to negotiate space usage with them as well. I feel bad--he's a little awkward child.

Bloggus interruptus...that's how mommies roll...

Saturday, March 13, 2010

Unusual strokes of luck

Not much justification for lack of blog updates other than the fact that I've been playing around a lot all week. Fortunately, The Boy has had good fortune in the white blood cell department, better than we could have expected, so we've been able to play.

Platelets tanked, so he got a transfusion yesterday. They were at 9. That's ridiculous.

Hemoglobin has held steady; he has gotten "tanked up" at the end of the last few chemo stays and that has been good enough to hold him over.

So let's see...I visited the local WIC office on Tuesday. Yes, I did. Hey, only one person in our family has any kind of job, and substitute teachers just don't make that much money. The WIC people don't agree with what we feed Meatball, or at least the program doesn't, because they only give baby food to children under 1. They are also rather surprised to see me "still" breastfeeding and are glad to see it.

Let me go on record saying that baby food is gross. Except baby bananas--I like them myself for some reason. But even the concept of baby food grosses me out. Meatball has two teeth, but he has really hard gums, and he chews just fine. Why would I play games with him trying to feed him cream of whatever? Oh, and most of the Gerber "Graduates" stuff is world class crap. Read the ingredients and check the sugar content. Yet people get so excited about their kids being able to eat "Puffs." No thanks.

Anyhow, The Boy gets some nice staples, including fresh veggies. I would for myself as well, if my doctor's office in NJ would fax over the appropriate info so that my doctor here can fill out the form. They give more food to exclusively breastfeeding mothers. Up to a year, anyway. Meatball will likely nurse longer than that, but he is such a great eater that he'll likely be nursing less after a year.

Highlight of the WIC appointment: I was told that The Boy's hemoglobin level was low, around 10.5 (there is a place for the doctor to fill that out), and was asked if I was concerned, and what did I want to do about it. It took every ounce of restraint that I had in me not to laugh in her face. Remember the whole thing about cancer treatment causing blood issues? That's kinda how it works. And 10.5 is about as good as it gets for The Boy while he is on treatment. So while iron supplements or leafy greens might be nice, they don't do for The Boy what a blood transfusion does, when he is on cancer treatment. Brilliant, brilliant people, over at the WIC office.

Let's see what else...lots of playtime with boys this week! Most days I had little errands to do that prevented me from being able to do any work, so with the remaining time, we played. Visited the playground, too!

I'm so glad to see The Boy enjoying himself at the playground!

We made friends at the playground this week--Daddy and The Boy made friends with a mom and boy, and then we all made friend with another daddy and boy a bit older than Meatball. We also had been on Sunday to meet friends that we already knew.

I had a concert this evening. There was an issue in one of the other parts, and it wasn't corrected over the course of rehearsals. I figured I'd be subtle and drop the conductor a note about it. He addressed the issue and DIMED ME OUT by thanking me! I hope that the whole orchestra doesn't think I'm a tattletale.

The concert went well, though. It was a shortened concert version of Carmen. I've played it before, the whole thing, and it's just such a great opera. In particular, the composer uses the entire orchestra REALLY well. I told the performer who played Don José that no one does crazy like tenors.

I did have a Tubby the Tuba experience, in that there are many times where beautiful melodies are being played, and intricate music, and we're just standing there going "oom pah" all the time. That isn't entirely true but, particularly with us having both cello and bass parts in front of us, it is easy to get jealous.

Tomorrow: clean out the cars (maybe take them to the car wash), do laundry. Play with boys.

Tuesday, March 9, 2010

An Evening.

The gem of the evening:

In the tub, The Boy has three little wind-up toys--Elmo in a submarine, Eeyore in a boat, and an ordinary blue alligator. The Boy knows that alligators have a tendency to bite, because there is a website we visit (letters, naturally), where there is an alligator who opens his mouth and I make a grand gesture that the alligator has bitten me.

So it was a grand old time with The Boy's bath, and I had the wind-up toys going. He grabbed the alligator, had him slinking up the side of the tub, and right to my knee! Oh no--the alligator bit me!! This was HILARIOUS to The Boy. And the thing that really made it funny was the manner in which he manipulated the alligator--slowly sneaking the toy closer and closer to me and then suddenly he would make it jump out at me.

I didn't work today, figuring that I'd attempt to get my driver's license transferred. I learned that my "proof of residence" had to consist of me bringing one of my parents to the DMV. Therefore, it wasn't something that Musical Daddy and I could do together, not if we wanted to avoid bringing The Boy there. Too bad they don't do that on Mondays. What we were able to do while we were out there (it wasn't that far away anyway) was get a digital adapter for our bedroom TV, as we haven't been able to get many channels recently. We also bought shoes for Meatball! They are so cute! He was measured for shoes and was just over a size 4, so we bought size 5 shoes for him. He looks very grown-up wearing shoes. The Boy got a pair of Buzz Lightyear shoes, and Grandma and I each got some new shoes as well. Hey--it's Payless Shoes, so we didn't spend much, and if I was actually asking to buy shoes, it must mean that I need them, because I hate shoes.

Before all that, I took Meatball on an errand to get some paperwork for Musical Daddy and to the pharmacy to get Benadryl for Musical Daddy. I also looked for the "non-drowsy" kind, only to have the pharmacist tell me that they didn't make that and they never did. Um...what? I distinctly remember a pink pill and a blue pill. She figured out that whatever I was thinking of was basically Benadryl plus Sudafed--something to bring you down with something to keep you up. No thank you--not sure if it really was a good idea to mix all that with Musical Daddy's current medicine regimen. Sleepy Benadryl it is.

We had a delicious dinner of steak, chicken wings (for Aunt W who doesn't do steak), rice with black beans, stir-fry veggies, and chicken soup. Meatball had some steak too. Naturally, since it is meat, he loved it.

Musical Daddy left for rehearsal, and not long after Grandpa and I cleaned up the dishes, Meatball was ready for bed.

We sat around hanging out for a little while, and then I went to the gym for my workout. Because I'm out of my mind, I'm going to do the squats-deadlifts-bench press-military press workout for the next month. Thinking about it, I may end up doing that workout only twice a week and doing the rest of my exercise on Wii Fit once it actually gets here.

It was at this point that I gave The Boy his bath with hilarity ensuing. Medicines and bears (including Neupogen) followed, at which point we went upstairs to brush teeth and read books. Once The Boy figured out that I was serious about the no-TV thing (we're trying to make it so that The Boy goes to bed at a reasonable hour and does so without the TV on), he started asking for books. We read the Goofy story and a Batman book, and turned off the lights and went to sleep.

I awoke a bit after midnight with Musical Daddy still not there, having gone to get a new videogame, to...many unhappy returns of The Boy's dinner. Which is why I'm still awake because the whole experience made ME queasy. Fortunately, my father was just coming up the stairs, so I was able to pass The Boy off to them while I did cleanup. Stripped down to the bare mattress, too. Tonight I think we all sleep in the children's room, because there's no mattress pad or anything available.

*Sigh*...just another normal evening for us, most of it just lovely, except for the midnight puke part on the part of The Boy. I guess that for many parents, the extra bed-changing would have elicited more confusion and concern; we already have the system worked out just fine.

Saturday, March 6, 2010

Teaching follow-up, et al

I just came from the gym. I hadn't been at all this week due to The Boy's hospitalization. I was there once last weekend and missed the week before due to illness.

So Musical Daddy recommended that I do squats, deadlifts, bench press, and military press, and that would be my workout. Four major multi-joint exercises would hit many of the muscles. I've decided to stick with this workout for about a month, and just do that every time I go into the gym.

That's HARD!!! I need a bit of coaching with my squats and I need a refresher on deadlifts, but if I'm doing only this, I can get help from Musical Daddy next time we're in the gym together. But wow--that's a hard workout.'s four major multi-joint exercises.

My "fitness goal" is to get rid of a little excess weight/fat that can mostly be attributed to having two children in under two years, and to maintain a healthy level of physical fitness. I'm not necessarily making any numeric goals, although I might, once I get on Wii Fit again. I don't want to say that I'm looking to lose x number of pounds or to be down to a certain clothing size, because I found that the last time I was exercising consistently and eating well, things fell into place in their own time.

On a mostly unrelated topic, I had a few more thoughts about the whole teacher issue, some of which may be offensive. So, true to form, I'll start with the most offensive statement:

The best and brightest high school and college students usually do not become teachers.

Keep in mind that I did not make an absolute blanket statement about ALL teachers. If you are a teacher who disagrees with this statement, particularly as an absolute, you are probably a part of the minority as a teacher who WAS a very high achiever in high school and college.

Consider, also, that there just isn't enough incentive for "top talent" to go into teaching. Not when there are so many other career options that offer potential for growth, more prestige, more money, and a lot less nonsense.

Different schools with different types of students require different types of teachers.

If you have a conversation with a teacher about his school climate, you will either get an answer about why that type of school is preferred or why he would like to be elsewhere. Many teachers who like teaching in urban settings will tell you that they like to be in a place where they feel needed. But then, there are issues in urban schools and even some suburban schools that other teachers prefer to bypass.

People who know nothing about education will swoop in and proceed to treat the teachers like children.

Come on. You know it's true. Have you been to an in-service brought to you by some outside company? Have you been to an in-service where they say the same thing over and over again?

Okay, enough about that.

Nurses sometimes have the same sets of complaints as teachers. Not surprisingly, nursing and education have been traditionally women's jobs. Nurses do horrific amounts of work and have huge amounts of patient contact. Nurses don't get paid nearly what they are worth.

But the way that nurses, and teachers, do their jobs and continue to perform despite the difficulties is that they care about the people who really matter--the patients, and the students. It takes very special people to become nurses. A certain kind of intelligence is required...and we've noticed that it's not necessarily something that can be learned. Some have it; some don't. Same goes for teachers. Intelligence alone isn't what gets the job done.

Thursday, March 4, 2010

Teacher Post--You're All Fired!

Rhode Island School fires ALL of the teachers.

You've heard of throwing out the baby with the bathwater. This is more like...trying to bathe the baby in oil and wondering why he isn't getting clean.

The current emphasis in education is on assessment and accountability. This might be a nice way of saying, "let's test students until their eyes cross, and then we'll test them more." Obviously, it's more complicated than that. Plenty of schools and districts have really done well in terms of motivating students and using language that makes them feel as though they can succeed.

President Obama has gotten involved in the discussion about this high school and about the district, and I have to say, Mr. President, I'm disappointed. Every solution that he presents places the blame entirely on the teachers, and in all honesty, it gets old.

We're tired of shouldering all of the blame. Transfer the students to higher-performing schools? Find higher performing teachers?

How about transferring the students to higher-performing homes? Get the students some higher-performing attitudes, and some higher-performing friends? Maybe get them some higher-performing parents and siblings?

Sarcasm aside, there are many factors. If policymakers really want teachers to take students and get them to the point where they can pass tests and do grade-level work, they need to get around the various factors in their lives. Not only do they need to "reach the kids" in terms of getting students to listen, they also need to find time for students to work on homework despite having jobs or younger siblings to care for. The teachers have to find a way for students who don't speak the language to understand the material without actually giving them ample time to learn it. The teachers need to convince parents that education is worth time.

EDIT: please note that I am not trying to shift from placing all blame on teachers to placing all blame on students and parents. Improving education would work a lot better if blame became irrelevant.

It's a lot to do. I'm not going to sit here and bellyache about how we as teachers can't do anything about these factors; I am proposing only that, once again, policymakers and politicians have missed the boat with regards to this school in Rhode Island.

I feel bad for the children.

Wednesday, March 3, 2010

Things I Don't Need, part eleventy-one

This morning, one of my tasks was to drive the car to the dealership for service and have my dad drive me back home. Best thing to do, generally, if you don't have a real appointment, is to get there early. I figured, leave the house at 7 or thereabouts, get to the place at 7:30. Remove the rear-facing carseat from the van so that Meatball will be able to get around during the day. I proceeded downstairs on my way to do these things and HOLY MOTHER OF MOSES THERE'S A RAT DOWN THERE!!!!!!!!!!!!!!!! I screamed like a hysterical woman, ran up the stairs, losing a shoe and not caring.

I'm not too squeamish or easily frightened which is why, although the experience was startling and I was concerned about walking in the basement for the rest of the day, I was perfectly fine once I didn't see the little grey thing at my feet. Nice thing about living in this house, where my parents have lived for years, is that they have the same people that do stuff around the house, including the same pest control guy. So Bruce will be coming tomorrow morning.

The other item on the agenda was to get a form filled out at the doctor's office. You know the routine. You call ahead, they tell you to bring it in, they say "Just wait here for a bit and we can take care of this." You wait. You wait, and then you wait some more, and finally you say, "I'll come back later" and leave the place kicking yourself for not doing that half an hour ago. That's how it went down this afternoon. Time wasted = me paying an idiot tax.

But I think that the granddaddy of things I don't need happened this evening, when I was with The Boy at the hospital. I should preface this by saying that I spent a truly delightful afternoon and evening with my older son. He was oodles of fun and just so cute. He was in a good mood and he even ate reasonably well, which was a change from how he had been over the past few days.

The incident in question began when I informed The Boy that I needed to use the potty. I was expecting something like this exchange that he had with Musical Daddy, but no such luck--apparently, he didn't really want me to go potty. He was also standing by the bed at the time, and he seemed to want to get in the bed, which was tricky for him to do on his own. So I picked him up and *SNAP* went his IV line. Yes, the thing through which the chemotherapy was travelling. Hanging from his accessed port (or so I thought) was a little tube, and on the floor was the rest of the tubing. It dripped once or twice before realizing that there was no patient attached.

I called the nurses' station, of course. Just a bit panicked. They took care of the floor problem and the port dressing was removed for de-access...only to discover that the de-access had already taken place by virtue of it being yanked out. Oh, and I did use the bathroom once the nurses got there. Time to reaccess. Oh wait--the port seemed to be tilted. This is after the accessing, free of numbing cream, had already been attempted. Remove, order chest x-ray. Yes, I'm serious.

Fortunately, the chest x-ray showed that the port was still just fine.

The afternoon was lovely, as I said. We played in the playroom and met some new friends. The Boy even played with some other friends. There was a toy that had a truck going down a ramp. The other little guy pushed the truck, and it kinda ran into The Boy on the opposite side of the table, which he thought was HILARIOUS. The Boy also decided to "tackle Mum" in front of this little guy's family. They found it quite humorous.

Unfortunately, this new friend was just diagnosed with ALL (acute lymphocytic leukemia) and his family is new to the cancer family journey. They don't live too close to the hospital, so we have extended the offer for help with whatever they might need since we're so close.

Tomorrow, I am substitute-teaching for my middle school science teacher. Should be a good time.

Monday, March 1, 2010

Chemo 17, comin' atcha

The house is quiet. The garbage has been taken out. The dinner dishes are done. A load of laundry is running downstairs. The household chores for the evening are complete.

Tonight, The Boy is in the hospital for chemo. Musical Daddy is doing something...musical (singing at chorus rehearsal). Meatball is fast asleep.

Grandma is with The Boy for the evening, and Grandpa is out of town.

What should be happening is that The Boy should be running around the house playing and going from room to room and tackling us at random. "Tackle Mum!!!"

Instead, it is quiet, and it just doesn't feel right.

We had a VERY fortunate February, in which The Boy not only had no hospital stays beyond scheduled admissions but also needed no transfusions except for some blood, tacked on to his previous two chemo stays. Twice--once last week and once last night--we had fever scares, where The Boy's fever was creeping up and up (by the way, their magic number here is higher than the one in NJ) but eventually came back down on its own. He was unsettled and not sleeping well, and snuggling up to Musical Daddy, who thought that he felt warm and, as usual, was correct.

I spent nearly every school day in February, save for a sick day last week, on the same substitute assignment. I thought it might be in my best interest to sub other places ("it's not you, it's me...I need to see other people...") despite the fact that this job is still available and is a music position. I'm not eligible to be hired, at least not yet, so it isn't even as if they'd put me in there should the teacher choose not to return.

Today I took an assignment at the middle school down the street. As in, within easy walking distance. I walked out the door close to 8AM and was in the door at 4PM. The job was art. I'm very much NOT a visual art person although I have a pretty decent knowledge of the concepts that are actually taught in an art class and what the expectations REALLY are. The goal is not that everyone become artists or that kids learn to draw better; art class objectives deal with examining things visually and learning how to depict them regardless of natural ability in the medium. Someone who does well and pays attention in art class may begin to recognize pieces of art as having been created by certain people in certain historical periods and may also be able to pick out certain techniques used that were also studied in art class. Additionally, art classes deal with various cultures and historical periods.

Come on, my artist and art teacher friends...did I get this one? Add to this, please, if I have missed anything, because I find it important to explain to people what is taught in music and art classes, if it isn't how to make people into musicians and artists.

Anyhow, very little of this came into play. I explained one art concept to one student; the rest of the time, the students were doing work on their own. I gave them a lot of leeway in the class, warning them that they were responsible for their work and acting like civilized human beings (I did phone the office once, though). The kids at the school were pretty good and I didn't have many issues.

Grandma said that I'm clear to work tomorrow. There are a few jobs posted. I just took one at another very nearby building, and we'll see how it goes.

I am anxious about this week's chemo. The GFR test being done will show us what the trend really is in The Boy's kidney function. The chemo given will likely be more than he got last time. We will need to see if he will recover promptly enough this time around.

I'm getting to the point where I just want the chemo to be done and I'm rooting for us to discontinue treatment. Many other cancer parents get nervous about the end of treatment. For many families, having their children remain ON treatment provides a sense of security in a way, that because the cancer is being attacked aggressively, it isn't coming back. Some people don't get this--doesn't the end of treatment mean celebration, and relief?

Being on the treatment regimen did not provide us with that security. The Boy regrew tumor while on treatment, even while receiving Doxorubicin/Adriamycin, which is a VERY vicious drug. We had an additional regrowth scare and an additional surgery, all while on treatment (fortunately, that one was a "false alarm"). All the while, we are hitting the lottery with the side effects--kidney damage, hearing damage, and nerve damage from the previous chemo which still has lingering effects (The Boy still can't jump). We don't even know about the late effects yet--loss of fertility, secondary cancers from chemo and radiation, growth issues from radiation, learning problems, digestive problems, and various other lovely things. And each time he gets more chemotherapy, it adds up.

Obviously, it is up to the doctors, but they will be getting a lot of information this week, and they will be getting further information as he goes through the cycle and recovers from this dose. With the information that they get, they'll be able to make those decisions.

The Boy has been such a bright spot. He always is, but particularly recently. He now knows pretty much all of his Hebrew letters and is beginning to recite the Alef-Bet (Hebrew alphabet). We went to the Judaica store yesterday so that he could pick out a few things, including Alef-Bet stickers and placemats. We called it the Alef-Bet store. He was thrilled.

He and Meatball can play together with this toy, the Busy Poppin' Pals toy. The Boy can open all the doors, and Meatball enjoys closing them. I figured out that he was ready for this toy the same way I figured out that The Boy needed to get it--when he started trying to close the laptop.

Meatball is a smart cookie. He likes to "bonk" and will do so when asked. Look right at him, say "bonk" and he leans his forehead in to touch yours.

I guess that since I am, in fact, going to work tomorrow, I should probably get ready.