Wednesday, April 28, 2010

Bass Bow 911

It's broken. As in, it cracked. I was at rehearsal, putting rosin on the bow and somehow it just got away from me. Yikes!

It was an expensive bow, although it isn't nearly the caliber of bow that I should be using on the type of bass that I have. So I guess it wasn't expensive by bow standards but it's still a lot of money.

I have another. It's a student bow. I left rehearsal and found the extra bow at home, so I packed it up and went right back to rehearsal.

I have an appointment at 2:00 to see if my bow can be fixed.

If not, I'm stuck with the old one for awhile. If I can justify the expense of a new bow by spending more time practicing my instrument, then I'll get a new bow once we have the money. Unless I spend the time working on my instrument, I don't think I deserve a new bow.

Monday, April 26, 2010

Monday Mundane

The more exciting events of today were a pee and poo in the potty right after nap on the part of The Boy and my first successful lunch outing with both children, and just me.

I guess that's not such a bad thing, as you know how much we enjoy and prefer the simpler, more mundane aspects of life with little kids. Could be sarcastic, but isn't.

We woke up before Daddy had left for work and had breakfast. We puttered around the house for awhile, doing assorted playing. I have discovered, unhappily, that The Boy has a habit of pushing Meatball over when he is unhappy about having to share his toys. Not such a problem on the bed, but it sounds rather painful when it is on the floor. I haven't figured out how to address the problem other than to pick up The Boy and tell him not to. If anyone has any suggestions, please share.

I'm being paged, so...


Lunch with the boys was touch-and-go. I did have to get them back in the stroller and prepare to leave, as The Boy wasn't cooperating as much as he could, but he became interested in talking about what was on the menu, things improved. He had macaroni and cheese for lunch. He also got applesauce, but it was chunky, so he didn't like it for some reason. Meatball and I shared a hot turkey sandwich and a salad. He enjoyed turkey, bread, cucumbers, lettuce, and raw onions.

I also enjoy raw onions--who am I to judge?

When we arrived at home, we all napped. The Boy napped in underpants, on a pad. When he awoke from his nap, he felt that he needed to use the potty. And he did.

We were able to get outside for a walk during the brief period of time in the afternoon when it wasn't raining. We went to visit a friend of mine whose phone number I didn't have, but I knew her address. Her daughter is 8 months old. Soon, we'll get to play, but this time, she was just about to nap. My boys had no problem playing with her toys while she napped. The Boy left the house in underpants and kept them dry!

Unfortunately, when he was having his snack upon our arrival at home, I noticed a puddle on the floor. So much for that. He really doesn't like interrupting his meals in order to use the potty.

I can definitely see how potty training is easier when you don't have other children around to distract you. You have to watch your toddler like a hawk to read the signs that he is going to go or that he is trying to hold it. Much like EC. Of course, had I been able to potty-train him early when he was first showing interest, it wouldn't have been an issue. Or had I just done EC with him or with Meatball...I'm very jealous of people who are actually able to do Elimination Communication. I understand the concept and it makes all kinds of sense--you're doing the same potty-training things and watching your child to see when they have to go, but you're doing it with babies instead of willful 2-year-olds. And in general, most of the moms that I know of who do EC aren't doing it for extra credit or to brag about how their child is potty trained at 2 months--they're doing it because it is MUCH more hygienic. The child uses the potty on their own at only a slightly earlier age than a child who is in diapers, but there's no fundamental difference in time spent changing diapers versus time spent watching and reading cues at the beginning of the EC process. Major criticism of this way of doing things says "But the child isn't trained--the parent is trained to know when the kid is going to go!" Typical response: "So?"

That digression aside, we're still sitting at the mostly-not-trained stage with The Boy. He wears underpants at home frequently, and he goes in them frequently. One success a day, just about, and everything else is puddles. Saves diaper laundry, though.

On Saturday night, I went to Wine Club, at a friend's house. It was a lot of fun. Buncha girls getting together to drink wine and act silly. And I got to talk about something other than poo.

Friday, April 23, 2010

Trying it, and

I'm not sure I like it.

Yesterday and today, Musical Daddy and I both went to work, him to his normal long-term sub job, and me to teach music at the middle school down the street. So close that I walked and even came home for lunch.

The problem with both of us working is very simple--neither of us is home to take care of the children. Not that anything went horribly wrong, mind you, but yesterday and today the boys were kinda passed back and forth over the course of the day and it's sometimes hard to keep track. Grandma was mostly in charge, but she had help. While I don't have anything but nice things to say about my mother or the lovely people that help us around the house, it gets confusing when the children are being cared for by multiple people and little things get lost. Point being, we LIKE it when one of us is with the children more often.

Grandma did a wonderful thing for The Boy and took him to the Shabbat program at the JCC. It was definitely difficult for her, since she worked before and had a lunch date with cousins after.

The talk is also about starting The Boy in preschool in the fall. I don't know if I want to do it. I don't know how important it is, and I don't know if he's ready. Sure, he needs to learn how to socialize eventually, but I'm just not in such a rush to put him in school of any sort...let him just do his own learning for awhile, considering how much he likes it. Also, if both Musical Daddy and I are working, the money goes toward child care for both boys. If only one of us is working, it is probably not financially possible for us to spend the money on preschool. We may be better off sticking with activities at the JCC and things like that, now that we know that we'll be able to get out of the house.

I guess I'm down on school right now. Sad, considering that I'm a teacher. Yesterday and today, I subbed for a music teacher who left music material for the kids but nothing that involved singing or performing and barely involved listening. The students read little magazine articles and answered questions, and the majority of the kids looked for the wording of the question directly from the text so as not to actually have to spend the time doing the reading. Not a single question asked involved any sort of actual critical thinking or creative thinking...just low-level repetition (Bloom's fans: knowledge level only!). Granted, this is middle school, and middle school is terrible, but elementary school isn't much better.

I just don't want to ruin his enthusiasm by sending him to school just yet. I dread the first day that one of my sons (probably both) comes home sad because a teacher shamed him for failing to conform. I understand that schools need to be run a certain way for safety purposes and that, unfortunately, there are a lot of kids who require more direction. I know a great number of teachers who are wonderful, who are compassionate and caring and also encourage kids to enjoy learning, not just for the sake of doing their work but because the subject matter is interesting. I have also seen a lot of teachers whose bluster and silver steam seem to lack substance, and the bluster is all that they have.

So I don't is possible that Musical Daddy and I will both find wonderful jobs in the fall that we just can't pass up, in which case we find a stable care situation where the kids are following a predictable weekly schedule. It would probably be our ideal for one of us to find a full-time job and for the other to do some other side work.

I used to be so passionate about the work that I did, but to tell the truth, I don't think that I'll ever get that back, so I'm not really itching to get back in the classroom.

Sunday, April 18, 2010


No real imaginative title today; I just like trucks. Or maybe that's The Boy.

This week, as I mentioned, we had our "go be normal" meeting. Of course, a few days later, that was followed by a few hours spent at the clinic for an infusion. The Boy needs this dose and one more, in another month or so, of Pentamidine. That's the prophylactic antibiotic.

And then we still have to go back to the clinic tomorrow to recheck his counts, as his hemoglobin was pretty low. At a level 7.8 he was still running around and wanting to play all the time, so they didn't transfuse. They expect that his levels will eventually go back up on their own. Takes awhile, though.

Also, we still need to do scans and visit the renal clinic.

Not quite normal yet.

The weather was just lovely for most of the week, so we tried to spend at least a little bit of time outside. The Boy is loving his swingset and sandbox and playhouse, as is Meatball.

Even more exciting is that The Boy is loving Meatball! He is sad when he goes anywhere without his little brother and is so excited to see him, either in the car or at home.

The Boy faces forward and Meatball faces backward in the car, so they are looking right at each other.

We took a short trip to Washington, D.C. We were there for less than a day. The purpose of the trip was to see family. Added bonus: we got to have breakfast with some wonderful friends. Family lunch was a lot of fun. We just don't get to see many of these family members all that often, and it was nice to have the kids see them. Particularly since the kids were really very good!

The travel itself wasn't terrifically difficult with the kids, although getting on the road was a challenge. Musical Daddy works downtown, and the thing to do, with him working downtown, is NOT to try and pick him up from work. Instead, should we travel east again while he is working in this job, he should take the bus that he usually takes and get off at the end of the line.

The Boy enjoys "singing" along with "You've Got a Friend In Me" from Toy Story, which also amused Meatball. I put "singing" in quotes not because I'm an uppity musician who knows that my son isn't developmentally ready to carry a tune just yet but because he starts off saying the words and screeches the end of every phrase, which sends Meatball into laughing fits. He does that with the alphabet song as well.

Meatball, by the way, bolts for the stairs every chance he gets. He thoroughly enjoys the challenge of climbing the steps. He has also just started to push up on his hands and feet, meaning that standing on his own will happen before we know it. Oy.

Potty training is crawling along for The Boy. He likes his underpants, but he doesn't necessarily like to put in the work that it takes to keep them clean and dry. We have gotten one potty pee about every other day, and a proper one, where he feels that he has to go and, escorted, he goes. He knows how to pull his underpants up and down too. I have been toying with the idea of this method of intensifying the potty process and really getting The Boy focused on it, as he will only think about going when someone is on him about it. The method is supposed to take only a few hours; when my mother used it on me it took 3 days. I might have been stubborn.

It is potty bootcamp. You're supposed to kick everyone else out of the house and pretty much exclusively keep the child in one room. You give drinks and snacks, the type that you wouldn't ordinarily want the kid to have all the time, and you have frequent potty trips and pants inspections. Accidents are followed by "practice" where the child has to practice going back and forth to the potty and taking down his pants and such. But before all this, the child teaches a doll how to use the potty.

I don't know when we're going to do it, or if we're even going to do it this way, but I have picked up a few things from the book.

I decided that The Boy needed to be able to pull his underpants up and down. I showed him how multiple times, and sometimes he'd get mad and say "Mum do it!" But now he knows how.

Then, I decided to teach him to check for dry pants. Sometimes, dry pants mean jellybeans. Other times, they mean hugs and kisses. The book indicates that the focus should be on staying dry, and that using the toilet is the means by which that should happen. Except that The Boy doesn't go that often, so he really does stay dry for awhile.

But then, a newly potty trained child isn't any easier to deal with than a child in diapers, I predict. If you're out somewhere and your child has to go, you have to find the potty RIGHT AWAY. You have to change the wet clothes just like you have to change the diapers. But sooner, because they get more upset about it.

Even so, The Boy is ready. And he can hold up his pants even in underwear. Barely.

Monday, April 12, 2010

The "your kid is done with chemo, now go be normal" meeting

This afternoon, we had a nice long sit-down with The Boy's oncologist to go over all of the components of our next new normal.

He reiterated that the doctor who had conducted the studies with the original regimens that The Boy had been on--both the initial DD4A regimen and the Stratum-C relapse protocol--saw no major differences among kids who completed only some of the protocol vs those who completed more vs those who were able to finish. What The Boy's doc told us this time that didn't come up last time is that this same doctor is now studying late effects and follow-up, so he is REALLY the guy who confirms that we're doing the right thing by stopping treatment.

In terms of other cancers, or the same type of cancer: If The Boy were to suffer a Wilms relapse, they would have an additional plan of action for him. I don't know what it is, but the doctor said that there is a next step in place. We'd be even in less of a bind than we would have been a few months ago had the spot on his liver actually been cancer. As for secondary malignancies from either the chemo drugs or the radiation, the doctor reassured us that The Boy has only a slightly greater chance than the general population of experiencing that. It isn't as though we are waiting for it, knowing that it will happen. He said that it probably won't.

The immediate follow-up items on the agenda are as follows: Pentamidine this week (that is the IV antibiotic that he gets every month or so). Schedule a CT Scan for this week or next, depending on when they can fit us in. Get an appointment at the renal clinic. Probably do another GFR.

The kidney function is still a very interesting piece. The next GFR could reveal that his function has gone down. Or up. Or stayed about the same. We wouldn't be surprised by any of those things. We have to have The Boy followed by that team very closely, as those issues have not magically disappeared.

More long range follow-up items: The Boy will get a second CT scan about 3 months after the first. Following that, he will have ultrasounds and probably X-rays for his followup scans and a CT only if something looks suspicious. The deal with the CT scan is that it exposes the patient to radiation, much more than X-rays, and there have recently been rumblings about not wanting to expose children to too much of this if possible, so I'm sure that's why we're going to ultrasound so soon.

He will still see the oncologist about every month for awhile. The port will stay in through his CT scan, and if the scan is clear, the port will be removed. Until the port is removed, pretty much every medical issue that The Boy may have will still go through oncology. We'll start to call his primary care physician for things as The Boy gets further away from the port removal.

As for The Boy's vaccinations, and Meatball's as well--we wait. The ones that Meatball has already gotten were not live virus vaccines. The ones coming up are. And The Boy has never had those vaccines. Likely, the kids will be on the same vaccine schedule, as they currently have had the same ones.

Medications--we're down to Enalapril and Sodium Bicarbonate. We don't give Zofran anymore (although I will give it before he gets Pentamidine because I've heard that it makes the kids nauseous), and he never needs Isradipine. We just took Pepcid off the list, although I don't want to get rid of it right away. My mother said that her acid problems got worse after chemo and she still takes something for it, so I'd like to keep the Pepcid around should The Boy need it.

He is allowed to swim. He can eat whatever he wants (although more caution should be taken with sodium and potassium). He can play with kids. In the Fall, we could both go to work. Not sure if we both will, at least not full-time, particularly if we don't get anything good.

We have to get used to saying that The Boy HAD cancer. We're hoping that he doesn't have it anymore. He is OFF treatment.

Tuesday, April 6, 2010

Pants memory

This past weekend, I took out a bin of summer clothing. I know that I had trimmed this stash down quite a bit after last year, removing things that I've had since I was 21 (or longer) that just didn't seem appropriate for me to wear anymore. I do have a nice collection of crop pants and shorts, and the weather has been so lovely over the past few days that I've been able to wear my summer stuff already.

I actually wore a few different things today--some shorts during the day with the kids (although we slept most of the day because I was tired and I think they're growing), a skirt for going out to dinner post-Passover, and a pair of light khaki crop pants with all kinds of buckles on them for orchestra rehearsal, figuring that neither the skirt nor the shorts were really quite right.

These pants are significant. I think that they either belonged to my mother first or she got them for me, but I started wearing them in 2008. On the right leg, faded into obscurity but still visible if you know where to look, are bloodstains. The blood belongs to The Boy.

June 25th, 2008. We were in the hospital. The night before, we had been admitted because The Boy was to get checked out for possible kidney cancer. Among the exciting things that happened was the event with the resident trying to place an IV in his hand OVER AND OVER again...then calling the IV team only to have them place it in his right hand, taking away his sucking thumb. It was truly a miserable night. At least I was able to nurse him and sooth him to sleep, somewhat. He had a CT scan the following morning, and we were leaving the hospital room after that to go for a walk, maybe to the playroom. All of sudden I saw blood. Little drops. On my pants and on my white shoes (I have since worn out those shoes). There was a problem with the peripheral IV, and it needed to be adjusted. While they did that, I asked if they could free his right thumb. He ended up not finding it until several days after his surgery, but it was a triumphant photo that I took nonetheless.

I don't know why I didn't just get rid of these pants. At this point, they are perfectly fine for wearing in public, as you can only see the blood drops if you look closely. And besides, moms get random oddities on their pants all the time.

Allow me to wax poetic: every time I wear them and see the spots, it takes me back to the hospital in New Jersey. To room 4224. And the Special Care unit, where we spent SO much time. But specifically, to that time in our lives when we understood that nothing was ever going to be the same. Now, even though these pants look mostly normal, the spots remain, as a metaphor for pediatric cancer having forever changed us.

Monday, April 5, 2010


The Boy has started to sing. Just a little bit. He had been reciting some songs in rhythm; now he has begun to differentiate between high and low sounds. Also, he will sing in the same register that I do (assuming that I pick a decent register for him).

I'm excited. Particularly since he is unlikely to receive further medication that will damage his hearing.

Today wasn't a very interesting day. I was exhausted. The past two nights, The Boy has been waking up angry multiple times throughout the night. He hasn't had a fever. Right now he has a bit of a temperature but nothing major, and both boys have had little runny noses. Unfortunate, but normal. But the whole waking up every hour, angry, isn't good. He is distressed by his wet diapers at night (but doesn't seem to care during the day at all) and insists on a change.

Meatball has been sleeping through most nights and going to bed at night and for naps with little issue, although lately he has been more likely to cry a bit when he is put to bed. Last night he got up at 4 AM. Not a big deal except that having been woken at 1, 2, and 3 by The Boy, a 4 AM Meatball waking adds insult to injury.

Anyhow, despite my somewhat zombified state today, we did have fun. The boys played outside, and they even got a new playhouse today!

Hopefully tomorrow we'll get out and do something else...and perhaps I can get a handle on the constant mess!

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Grandma magic!

Friday, April 2, 2010

Done? Done.

GFR of 44 yesterday was the final straw that caused The Boy's doctor to call off the dogs.

Previous concerns, as I have mentioned, were the kidney function (as measured by creatinine levels, GFR tests, and blood pressure) and the recovery of his blood counts in a reasonable amount of time. I had also elaborated on the doctors' concerns and our concerns about weighing the effectiveness of the chemotherapy drugs in keeping cancer from coming back versus the harshness of the medications and the collateral damage to our little boy.

Although we had expressed this concern to The Boy's doctor, feeling free to do so once he brought up the idea of treatment not going the whole way, we feel comfortable knowing that it was the doctor's decision and one that he made after consulting with other doctors.

Kidney transplant is still, most likely, in our future. Who knows when?

We have already received a lot of positive feedback from friends and family about what remarkable news this is, that The Boy is done with chemo. While we are glad about that, and the chance for us to live our lives and for him to be a "normal" little boy in short order, it isn't all good news. It doesn't escape us that the reason for discontinuing treatment is that his kidney has been so damaged. It also doesn't escape us that he has just as much chance of being cured completely as he has of requiring more treatment later on, either for Wilms recurrence or a secondary cancer. So if we aren't jumping for joy when we receive a happy message, please understand, it's not you. And it's not your fault if you don't know what to say, because we don't know either.

As we have expected to be forgiven (and sometimes have not been, by those who should have cared the most), we will forgive anyone who asks the "wrong" question or says the "wrong" thing if the intention was good. As we have not always been able to make time for family and friends, we plan to incorporate that lesson into the rest of our lives in allowing others the flexibility that has been a necessity for us.

I still have visions and memories of horrible things. I have visions of the family fallout brought on by The Boy's illness and Meatball's arrival (really, that it brought out things that were already there, and revealed people for who they really were). I don't know if I'll ever recover from that. Musical Daddy had a similar experience regarding something else in his life, where all of a sudden he started thinking about it again and couldn't sleep and felt angry all over...that's how I feel about a lot of these issues that started awhile ago, escalated when The Boy was sick, and came to a head when Meatball was born. And every time something comes up that relates to it, I'm taken back to that time. It's why "forgiveness" is so difficult, particularly when no one thinks that they need forgiveness or that anything was done to hurt me. I'll never get back what was supposed to be a pleasant beginning of life for Meatball. It seems as though no one wanted him and no one wanted to be around him, and that he was my problem that interfered with everything, including care of The Boy. It was these crushing feelings that stopped me from getting real help with him and suffering through two months of tongue tie. And having him suffer, and cry all the time, and be miserable. Somehow I thought that I deserved it and that people who didn't like the way that I live my life and raise my children, particularly that I nurse my children, wished pain and suffering upon me, and that it worked. Mostly the delusions of a still-hormonal mom of a newborn. And it just kept going and going, the fighting, the back-and-forth...and all that Musical Daddy and I wanted to do was to take care of our children.

Okay. Enough.

The point is that, slowly, we will start to get some sort of life back. What we had is gone. We left the house that we had. Left the state. Left those doctors and nurses and that hospital. Left jobs, of course.

Now, we start over. We didn't think that we needed to, but as long as we have to, we may as well do it right.

Thursday, April 1, 2010


No more chemo. He's coming home now. That's it--the doctor doesn't want to give him any more.

He is fine and has a perfectly good chance of being "cured."

More info to follow.

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Asleep on my lap!