Friday, February 26, 2010

Pile-on February

Snow total for Pittsburgh, PA in the month of February? 41.1 inches. And counting. This is now the 7th day in the month of February with a school cancellation in the Pittsburgh Public Schools. The second day where I was already on my way to work only to have them change their minds.

I've spent the entire school month in the same substitute teaching assignment. I need a bit of time to take care of various life business. I was in two schools, one of which I loved and wish I could stay there. The voices on these kids are fantastic, and the enthusiasm about singing is great. Remembering the great choral singing and spectacular productions that they used to put on in my previous teaching job, I could envision many of these kids in a similar situation.

In fact, one of the third graders looks and sounds like one of my favorite violinists, whom I taught in grades 4-6. She is now in 8th grade, and she has a doppelganger in the Hill District.

This chemo cycle was really easy for The Boy. Of course, he only got 40% Etoposide and 50% Cyclophosphamide, so we're almost at the point where the chemo is only annoying and isn't actually strong enough to affect potential cancer.

He may very well end up getting a higher dose next week, although he's supposed to get Carboplatin along with the Etoposide.

So we see.

The Boy knows how to change DVD's in the players. He also knows how to say "Where are you?" about people and things.

Meatball crawled a few paces toward the computer. He also eats oatmeal, partly with a spoon and partly as finger food. What, you didn't know that oatmeal was a finger food?

I have been instructed to get out of my work clothing and into some PJ's.

Wednesday, February 17, 2010

You don't forget how, if you learned properly

It's been an interesting few weeks in terms of my illustrious substitute teaching career. Of the 8 potential school days that could have occurred since Monday, February 8, we have had 2, and both were delayed openings for students. Yesterday and the day before. That's it. All of the other days were snowed out.

(Why is it that around here, a delayed opening does NOT apply to teachers?)

Nevermind the amount of money that I did not make as a result of nature being a mother. You know what I'm saying.

Remembering that I am aware of the openness of this forum, I still feel perfectly comfortable saying that on my first day in the classroom (a Tuesday), I was eaten alive. Plain and simple. I had no plans (poor guy has been out for awhile) and had no idea what to do.

Yesterday was the first day that I got to see the same group of children that I had seen on that first day. Although I missed two classes because of the delay, I did get to see the rest of them. I was armed with a few good plans, an iPod loaded with listening examples and the cord with which to connect it to the stereo system, and the knowledge that if I give these kids an inch, they think they're rulers.

The plans for grades K-2 involve getting them to recognize the singing voice and to sing intervals in tune. It seems as though all they did with me was sing some simple songs and play some games, but with the repetition of a few songs, they are reinforcing the ear-training skills.

Grades 3-5 are working with syncopation. I changed the lesson and the material according to grade level, but the goal is to get them to recognize the basic syncopated figure in several different songs long before I tell them what it is or what it looks like. In honor of Black History Month, we will examine spirituals and gospel music (yes, there is a difference), and they should be able to pick up the syncopation that they hear.

Grades 6-8. This is the point at which I stop talking about work, lest I say something inappropriate. Actually, they're not bad. They're fine. They did some things. They paid some attention. If I see them on a regular basis, I think I can get them to do something for me. Once I can trust them with pencils. Only one of my schools even has middle school in it. The other one only goes up to 5th grade.

I suppose that even though I've been out of the classroom for a full year, and so much has happened to me since then, I still know what it takes to be an effective teacher (or even a passable one) and what it feels like when it goes right (or when it goes horribly wrong.

On a different subject, I went to the gym this evening. I had been going regularly for a few weeks, but the combination of snow and hospital made it difficult last week. I'm still not quite back in the game in terms of my lifting, but I'm certainly not starting from square one. I know how it feels when the muscles being addressed are working properly, and I know what problems feel like. I enjoyed this evening's workout--slower repetitions, and a little bit on the heavier side with the weights. I very much enjoyed having Musical Daddy check my form on my incline press. I trust his expertise in the gym. Eventually I'll have to have him help me with squats.

They have a cool Smith bar in this gym--it moves back and forth as well as up and down, so you get more motion. Also, a lot of the machines are less rigid in their design and allow for more flexibility, requiring that you work harder to keep the form correct. The Smith bar is a bar on a track, rather than a free weight Olympic bar. It is usually lighter than an Olympic bar as well.

Tomorrow, The Boy will have his first counts drawn after this most recent chemo. We'll see how his recovery shapes up this time. Currently, we are fine from the renal standpoint to continue chemotherapy. Should he recover in about 3 weeks from the start of the previous chemo treatment, he will continue the regimen, probably at least the next two cycles to finish the phase. If it takes him longer to recover...we'll see.

Meatball had one of those days where he slept a lot. Hopefully he'll still sleep fine tonight. The last two nights have been awesome--he went to bed not long after dinner, woke up at 10:30 for milk, then back to bed at 11 and all the way through until 6:30.

I did have a nice day. I played with my boys. I put away almost all of the laundry (of course, in a day or two, we'll have to wash clothing again anyway), and I made a great dinner. My sister and my aunt came to dinner. We had pie as an "appetizer."

Monday, February 15, 2010


Friday, February 12, 2010

Good, gross, and world-class awesome

The good: it's looking more and more like we are NOT looking at a kidney transplant for The Boy in the immediate future. His renal function seems to be about where it was before. He also had a parathyroid test which came out fine (not kidney function per se but still part of the whole system), and the most recent ultrasound of his kidney showed a pretty healthy looking kidney.

The gross: C-Diff. They're going to send him home on oral Flagyl and see how he does. He took it a few times already with no problem. They have a nice pharmacy there, where they do good medicine compounding.

World-class awesome: We signed the closing papers for the sale of our house today! It means that we don't need to make an extra trip and it means that we're selling the house. Very nice, that we don't have to keep on paying the mortgage. While we would eventually get the money back, we would quickly run out of money with which to pay it in the meantime.

We are currently in New Jersey. The Boy is still in PA with the grandparents, as he is still in the hospital. We have Meatball. He was great in the car! He seemed to enjoy listening to music and trying to sing along. He was grumpy grumpy in the house, which was cold, making us nervous about our dinner plans. We needn't have worried, as once he had food in front of him, he was happy. He had cucumbers as his appetizer and ate quite a bit of lamb for dinner. He enjoyed spoons as well.

There was another baby there, a little younger than Meatball. Poor parents didn't get the memo about Baby-Led Weaning and were taking turns eating while the other either held the kid or fed him rice cereal. Much less fun than our kid chowing down right there with us.

Anyhow, night-night time. Later.

Thursday, February 11, 2010

Oh, okay, nevermind

Nephrology report is more like where we were in the first place. Still waiting to hear from them today AFTER the person who spoke with Daddy reads The Boy's case history.

Still looking at two factors, from the standpoint of oncology: renal function and count recovery. Right now, he is getting 40% of the Etoposide and 50% of the Cyclophosphamide. We have little reduction left.

More later--playing with boy.

Wednesday, February 10, 2010

Turn right. Recalculating. Drive. 3 miles...

The Boy's creatinine level, measured at .7 when he had the GFR, yielded the results that we got. The Boy's creatinine level, measured today, was .5, where it has been for a little while. With that level, the GFR number is more like 58, meaning that his function hasn't changed. EDIT: the fluctuation can be caused by not having eaten/drunk anything, which was the case that day.

The renal team might want a 24 hour urine. I'd REALLY rather not have him subjected to that, as the last time he did a 24 hour urine collection, it was a catheter and a pee bag, as of course he isn't potty-trained.

By the way, the title is an homage to my GPS.

If the GFR results reveal that The Boy has not suffered a drastic drop in kidney function, nephrology (the renal team) would have no problem with him continuing chemotherapy, at least from their end.

It is worth noting, as well, that a kidney transplant could not possibly take place until The Boy is a year off treatment.

Oncology, however, is also looking at the fact that even after a reduced dose, he took an extra week to recover. Extra recovery time can be expected when there is a fever or infection, but this time, thank goodness, we stayed out of the hospital. He needed extra time on neupogen and extra days to get the platelets back, although it was good to get through this cycle with "only" one transfusion. The doctor says that they can't reduce the doses of chemo agents too much and still feel that they are doing anything useful to fight cancer. Remembering that despite the fact that there is no physical evidence of cancer growth, chemotherapy and radiation are supposed to address whatever microscopic disease may be lurking inside the body.

With the possibility of less kidney damage, we will probably go through at least this "phase" which goes through chemo 17 and 18. These have carboplatin. Bad for kidneys. Bad for hearing.

We just don't know, but we trust our team.

Snow, complicating life.

We've mentioned that The Boy has been in the hospital since Monday morning, with Daddy. What has fallen to the background in terms of updates is the fact that we've had well over 2 feet of snow. The first storm was on Friday night into Saturday, and on Monday morning it was still difficult to get around. The second one began last night and is still going on. Blizzard warning in effect through 4 AM tomorrow.

What does this mean? Well, Musical Daddy has not left the hospital since he got there with The Boy. Good thing there's enough to eat and enough to do. Relatively speaking. It takes a long time to get to the hospital, which is only 3 miles from the house. The hospital has only sometimes had a full staff. I went to the hospital on Monday and Tuesday, and my parents were there last night.

Meatball has not left the house since Friday.

Yesterday was a better day, weather-wise. It still took a long time to get around, but it wasn't too bad, and Grandma was able to get to CostCo. Thank goodness, because it's crazy out there today. My dad went to a different office on Monday, went to his normal workplace yesterday, and today is working from home.

I miss The Boy. We all do.

We are supposed to leave on Friday to go to a wedding in New Jersey. They got snowed on twice too, but not like this. They did have school cancelled today in Central NJ, as per some of my friends and former students, who appeared to have spent the day on Facebook. Love you! Anyhow, we hope that we'll still be able to make it out there.

One of my friends just got off a plane, having come from Florida back home to Pittsburgh. I hope we'll get to see him. I also hope he gets home from the airport safely. It's crazy out there!

I was supposed to be working all week, as I mentioned. I haven't been. I even planned some lessons. I'm still not sure where the kids are in terms of the curriculum. I'd like to see the curriculum, if I'm going to be there for a long time. I still have to get there, though.

The city of Pittsburgh has really dropped the ball with the snow removal.

Snowstorms are a great opportunity for the conservatives among us to make the joke, "so much for global warming." Even conservative folks deserve a good laugh.

Monday, February 8, 2010

To Catch A Kidney

I've been nosing around online for information about kidney transplantation, and I was curious as to what would make a person a match, or exclude a person from donating. Here's what I have learned so far:

It is somewhat better for the patient to receive a kidney from a live donor vs. one who is recently deceased and a lot better for the patient to get a transplant without spending time on dialysis.

There are THREE factors that are used to match donors and recipients. One is blood type--same rules apply for receiving blood and organs (The Boy, being A positive, can receive O-, O+, A-, and A+ blood). The second is tissue type. With better anti-rejection medicines, this is less important, but we may as well try for the best we can get. There are six types of antigens in your tissue (three sets from each parent), and generally the best way to match the tissue is for the donor to be related to the recipient...but not necessarily. It's a more complicated version of people having different colored eyes, and The Boy could have the exact same color eyes--and the exact same tissue type--as someone he's never met before. The third, and probably most important, is called crossmatching. I'm assuming that this is related to the "type and cross" that is done whenever The Boy is about to receive a transfusion. White blood cells from the donor are mixed with blood from the potential recipient. If the white cells are attacked and die, the crossmatch is "positive" meaning that the donor cannot donate to that person. THIS is why parents should not donate blood to their kids if transplantation is ever going to be an issue--the child could develop an immunity to the parents' blood.

By the way, I have been getting much of this info from Living Donors Online. Also, I've been reading for a little while.

They also have a list of factors that prevent a person from being a donor.

Wanted: kidney

We aren't there yet, but we are getting close. The Boy's GFR was 58 last time: now it is 34.

We will be talking to the transplant team this week. We need to figure out what to ask them. For example, who would be good candidates? Me. Musical Daddy. Maybe my dad or brother. What happens to people who give up a kidney anyway?

Meatball may have been a good candidate if this were happening 15 or so years from now.

Also, this means that chemo may soon be over. Hopefully, he has gotten enough of it.

Sunday, February 7, 2010

Didn't think I'd really need this stuff

I don't need it tomorrow, because we're snowed in and it's a "state of emergency" here in Pittsburgh.

But I'll need it this week.

"It" is the information from my Kodaly Certification Level I coursework. When I took this course in the summer of 2007, while pregnant with The Boy, I had no intention of using it. Not entirely true...I intended to use them for reference, as the district where I was working had a Kodaly-based general music curriculum with several Kodaly-certified instructors. The general music component in my previous district was excellent, and as an orchestra teacher, I was enthusiastic about it (and I did teach general music for a year as well). I took the Kodaly course to fill a spot in my graduate school schedule for a course that got cancelled multiple times. I simply HAD to finish my grad work before the birth of The Boy.

Why did I think I had less need for this information? Well, I was satisfied with my job teaching orchestra. More than satisfied--I was thrilled. I had a great program with great kids. I was to have the best schoolyear that following year, in fact. I had no intention of leaving that position.

Thank you, cancer.

But I am excited that I'm doing the music thing, even as a sub. I really can do just about anything.

Wednesday, February 3, 2010

Should we stay or should we go?

The question applies to me, and to Meatball.

I'm doing my first Pittsburgh Public Schools sub job. I don't want to say anything that shouldn't be said on this forum. It's a music job, and I figured that with the guy knowing that he'd be out for the week (working only from the info on the sub website), I thought that he'd have plans that could be implemented. No dice. I have since discovered that the gentleman has been out for a few weeks. After being thoroughly pwned yesterday, I went through my Kodaly stuff last night to find songs and games and such so that I could start to get some music going in the room. Today was much better.

I mentioned to the secretary at one of the schools (it is a split assignment) that I had a better day because I made plans, knowing that I didn't have any from which to work. Her response? "Maybe you can turn some in for next week, then." She said that she hasn't received any indication that the teacher would be back and that could plan to keep the sub position. I said that I'd have to see, because I have a sick 2-year-old.

I wonder...could I actually manage to land a long-term job? Or a real job? We shall see.

As for Meatball, we are invited to a wedding next weekend in NJ and we're trying to decide what to do. The Boy can't travel with us, because he'll have low counts (or might still be in the hospital, for that matter). If we take Meatball, it's easier on him. He's fine with bottles but still not as accustomed to them. Bringing him means a bottle or two while someone else watches him (and we don't know yet who would be the one); not bringing him means a day and a half of bottles and someone else having to do the overnight with him, not to mention the fact that I'd have to bring a cooler and a whole slew of milk storage things. I also have to ensure that there is enough milk in the freezer.

Aunt Jeanne said that she'd come and stay over. Weather might be okay for Meatball walks.

So...we'll see.

Monday, February 1, 2010

Chemo 16--not quite yet

The Boy went in for a pre-admission checkup, but his platelet count didn't pass muster at 86,000. His hemoglobin level, at 7.6, called for a transfusion, not because of the specific number but because he fell asleep in the middle of the examination.

Repeat counts on Wednesday (at home with nurse Mary Fran) and we'll see about an admission on Thursday. That's easier anyway, in that it means two of the hospital days are on the weekend, when no one is working.

Tomorrow, one of our cousins is coming over, along with my mom's favorite contractor (and a housekeeper as well). They are going to assess the house to see what they can implement, organization-wise, including structures to be built and items to be moved. And toys to be shelved.

My kids have a LOT of toys. I'd love to throw them out the window give some away, but I need to figure out which ones are not likely to be used by either boy, or which ones might be duplicates.

Now, to sort through the puzzle box. See you on the other side.