Monday, August 30, 2010


BlogPress stinks.

It ate my LONG post about the party and The Boy's birthday.

Facebook's video stinks too. I recorded a video of The Boy singing Happy Birthday and blowing out candles, but it won't upload. WTF.

I'm having bad luck with technology.

In short, great party for The Boy. A good time was had by all.

This morning, The Boy went for his checkup. Same size as before--32 pounds and 37 inches. Not sure what chart to use but he is about average-sized. Which means that for us, he is a bit small still. He was very cooperative and even got his knee reflex back. You know, the one where your knee is tapped and you kick.

Lunch and playtime with Grandpa, from NJ. We met at the mall near where he is staying. The Boy rode the carousel for free because it was his birthday.

Glad to say I have 3 little violin kids starting next month! I signed up to teach through an online service. Works well for us, since we don't know anyone!

Also, September is almost here. Childhood cancer awareness month. Also, eat at Chili's especially when they have their St. Jude's fundraiser.

We rebelled. We evolved.

There are no copies. I'm not even sure about rebelling and evolving. But we have a plan.

There are still a few days left wherein we find out if someone just isn't showing up to work (and will leave a job open for us), but the more we talk about it with other people in the area, the more it becomes clear that getting a job in the area is REALLY difficult. It is impossible unless you know someone, which we really don't.

But then, I think I heard those warnings and didn't listen, because I thought that surely I was special. Or my husband was...that it would just take a bit of extra time and we'd be in.

It doesn't seem likely that we will remain teachers, whether we want to or not.

The plan is likely to get Musical Daddy some temp work, at the universities and in offices. From there, hopefully he gets a full-time job. Why not substitute teaching? Because it leads nowhere. And pays peanuts.

I wonder if, once we are back on a working schedule, I'll be able to fit in more time to practice and exercise. In theory. I just need to plan it.

Good BSG joke on Eureka this week, by the way. Unlike the substandard one that opened this entry (that I wrote last night but didn't actually post).

Saturday, August 28, 2010

Shampoo experiment

Or should I say, no shampoo experiment.

I picked this up from some of my crunchier mom friends. You know, crunchy granola hippie... I stopped using shampoo temporarily and have opted instead for baking soda followed by a cider vinegar rinse. Product optional. My hair feels great. It has stripped away all the buildup. But I'm not sure if this hair care method has staying power or if it works better as an occasional thing.

Most products for cleaning people and things are a bit chemical-heavy, so it might not be a bad idea to scale back on the toxins. Vinegar and/or baking soda seems to be the go-to solution.

Any feedback from the audience? I'd particularly like to hear from those who have permanently ditched a cleaning agent in favor of a natural product.

Thursday, August 26, 2010

Tuesday, August 24, 2010


The Boy's bloodwork was perfectly normal. Platelets in the 300's, white count of 11.1 with an ANC of 6660, hemoglobin 11.4.

We're darned close to having an ordinary almost-3-year-old!

We have him in underpants (or no pants) full time during the day. Diaper at night, still. We won't rush that one. He's doing pretty well with it, still having occasional accidents, but we figure, it's better at this point to get him further accustomed to being an underpants-wearer and a toilet-user than to keep him in diapers and not build the habits.

We still have another year before we're going to put him in any sort of preschool or daycare. We figure, he needs another year of learning how to socialize. Then, he'll be 4 and Meatball will be 2.

But then again, who knows where Musical Daddy and I will be with our careers? We still have no jobs and not much in the way of prospects. We are still hoping that there will be some people who just won't show up to work this year and then they'll give us a call.

If I don't get a teaching job this year, I'm really thinking that I'll start the prerequisites for a nursing degree. The program at the University of Pittsburgh for people who already have a Bachelor's degree would require 30-something prerequisites, some of which I could probably do online or at the community college (and most of which I don't have, since I didn't major in science), and three semesters of nursing classes.

The main reason why I'm thinking about this is, I've spent a LOT more time reading about medicine than I have about music over the past 2 years. Although that's a by-product of my family situation, it also might be a pretty good indicator that I shouldn't fight the change of career path if that's what is revealed to me. Getting back in the game teaching will likely renew my passion and interest for music and teaching, but if it doesn't work out that way, I'll just keep playing recreationally and/or singing, and spend the rest of my time trying to reinvent myself.

Monday, August 23, 2010


Clean ultrasound and X-ray for The Boy!!! Everything looks great. I called to see what the results of his bloodwork were, but haven't heard yet.

Chest X-Ray and ultrasound were both done. I sat there watching the ultrasound getting anxious.

We go upstairs in an hour and fifteen minutes. I think that they'll have results for us.

The Boy is racking up stickers and will be getting at least one lollipop for his efforts.

Please, PLEASE, let them find nothing except what belongs in there.

Sunday, August 22, 2010

Bring on the Scanxiety

Tomorrow, The Boy goes in for his 3 month ultrasound and chest x-ray (4 month, because it took us awhile to get his end-of treatment scans with it having happened so suddenly). They want him to go without eating for 6 hours. I'm realizing now that with him being nearly 3, he starts to cross into the realm of the "older" kid patients. So he'll have a nice big breakfast, and we'll still get to give him water and a little juice (but not too much--we've been doing SO well with the normal poop) until 2 hours before the appointment.

Musical Daddy and I will both get to go to this one, and Grandma will watch Meatball.

Both Musical Daddy and I are big believers in being put where we need to be, not necessarily where we want to be. Not that I'd ever WANT to go through what we did if I had the choice, but I'm amazed at how much being cancer caregivers has shaped us as parents. For the better. We belong here and not where we used to live, even if many of the circumstances surrounding our move were horrific. So in that case we were forced to come here, but we know that it was best for our family.

So we can't help but wonder, as scans approach: are we still without jobs because we're not done yet? Are we going to get bad news tomorrow? Do we need to keep fighting?

Or, less pessimistic: are we without jobs right now just so that we can stay focused on getting him and us through these tests, and once he is declared NED, then we'll get some offers?

The Boy is a completely changed child since he was taken off treatment. He is stronger, healthier (obviously, since he isn't being pumped full of toxic chemicals), smarter, more willful, and at least 5 pounds heavier. His speech patterns and vocabulary are fantastic. He has had such a good time over these past several months, without us having to worry about his counts or other kids getting him sick.

He has also had a fantastic weekend with potty training! He hasn't been accident-free but he's been darned close, and he has actually taken himself to go almost as often as we've taken him. We have made trips out with him in underwear and he did quite well. Yesterday he used the potty at Dunkin' Donuts and at the playground! I think that part of it is that Musical Daddy and I are really on the same page with reminding him to go and I've conceded with the rewards. Also, I let him take the iPod when he goes to sit on the potty.

Only thing I'm not crazy about is that he has preferred the potty chairs to the regular toilet much of the time when he takes himself. It's an extra step to clean them out, but not a major deal. He still uses the toilet often enough to feel comfortable with it. And usually he sits backwards.

Meatball, meanwhile, has been slowly increasing the amount of walking he does. He still crawls more than walks, but it will be a few weeks yet until he is walking full time.

This weekend, Musical Daddy's buddy came to visit us from NJ. We had a great time! Sandcastle on Friday with the kids followed by dinner out, just the 3 of us. The boys (meaning them and the kids) hung out Saturday afternoon and went to the comic book store while my mother, my sister, and I saw a show, and then Musical Daddy and his BFF went to a ballgame. Sunday morning, we went to The Original Pancake House for breakfast. There is one of those where Musical Daddy grew up, and we would go there frequently with his father. There are two near here, neither one of which is convenient, but they are close enough so that if we wanted to go for a special treat, we could. Their pancakes really are better than anyone else's.

Anyhow, on tap for the week is the doctor day tomorrow, rehearsal for Musical Daddy tomorrow, rehearsal for me on Tuesday. Thursday night, I'm going to another show with my mother and some friends. Somewhere in there, I'd like to fit in a tour on the Gateway Clipper Fleet, with Musical Daddy and the kids. So there's a lot to do.

Please pray for us/think about us tomorrow; wish for clean scans for The Boy. Thanks, everyone.

Friday, August 20, 2010

Things that scare children

I have heard a few people talk about their little children and their bedtime phobias. Monsters, or scary shadows, or things like that. Maybe specific objects are scary in different situations, or maybe there is a general fear of the unknown that lurks in the closet.

Perhaps the child is full of baloney. Hard to say. Sure, kids will claim bad dreams or scary monsters to get out of going to bed.

The Boy? Never. He is very straightforward in his resisting of bed (although he really has done a good job of spending much of the night in his bed) but never attributes bed refusal to monsters or closets or anything scary.

Does he lack the imagination? Is he just so tough that he feels he can take on whatever comes at him? Is he a bad liar like his mother?

My theory--and who knows, it may come back to bite me--is that nothing found in his bedroom is anywhere near as scary as what this child has seen. Monsters in the closet or little bad dreams have nothing on medical residents with needles, horrible chemo drugs, the radiation machine, and cold sterile room. Furthermore, we really do our best to validate his fears and concerns.

He's good...

Monday, August 16, 2010

Smooth sailing in nephrology (so far)

Today's nephrology appointment went well, with the understanding that not all required tests are complete, but everything so far was fine.

The appointment was at 3:30. We left the house at 3, even though it takes 10 minutes to get there, leaving us extra time to find a parking spot and such. I made sure to bring The Boy's urine sample, which I had collected from him at a time when I knew he had to go because he'd been without pants for hours and hadn't gone in nearly two hours. I figured that to ask him to pee in the cup while at the office would have been too stressful, and the timing would have been too difficult, so I'd get it in advance. It was either that or have him wear a pee bag and I'm glad to say that he is potty-trained enough that he can avoid the pee bag for the foreseeable future. The pee bag, if you will recall, is stuck around the appropriate part to collect a urine sample from a non-potty-trained child. The Boy was never a big fan, and who could blame him? So I'm very glad that the pee bag is a thing of the past.

My mother told me that The Boy's diaper that he had on was coming undone but I didn't do anything about it. When I got him out of the car and took the diaper off, it was dry, so I asked him if he could wait to go until we got upstairs.

So, armed with The Boy's urine sample, we proceeded into the hospital. The Boy was amazingly cooperative. He held my hand when he was supposed to and ran in whatever direction he was told. The first place we went, of course, was the bathroom. They have cute bathrooms in that waiting area, with a normal-sized toilet and a little tiny one! The Boy was excited to use the tiny toilet and he actually went! I wished I had some underpants to put on him, but I didn't, so he wore his sea-green diaper with the snaps.

We went to the second waiting area, registered, and then waited some more. The Boy played with one of the little kiddie computers that they have in the area and even shared with a smaller boy.

Then to the actual nephrology area, where the med-tech (I think that's what he was, unless he was a nurse) asked if The Boy was potty trained and could pee in a cup. He was glad when I produced the sample and told him that I had collected it in advance, knowing that I'd need it. We did The Boy's vitals. He hasn't grown since last month, when he was at the pediatrician for something. His blood pressure was okay but not great, since he was making a fuss about it.

We got to wait. And wait and wait. I even had a post ready about waiting for over an hour to see the doctor but I forgot to post it because she arrived. But, before she did, The Boy wanted to use the little toilet again (it was my idea but he still did it).

First she told us that The Boy's basic urinalysis looked fine. No significant protein, no blood, no albumin, no leukocytes, nothing was there that shouldn't be there. That, combined with his blood pressure both there and what I reported from home, made her think that his kidney function is better. She said that she wanted to run a protein/creatinine test on the urine, and she had some bloodwork that could be done next week when he goes to hem/onc.

The medication that The Boy takes is good for his kidney, so she wants him to stay on it, but since his blood pressures have been good and he sometimes didn't need it under the parameters she had set for it, she reduced the dose so that he would get it every day. For now, 1 mg of Enalapril, and we are to monitor his blood pressures. If it gets over a systolic of 105 consistently, we call her and adjust the dose.

It's still so amazing to me that the ONLY medication he takes now is the Enalapril. He used to be on such a cocktail.

As for his diet, the doctor said that we should keep him away from TOO much sodium. As he gets older, if he continues to have kidney problems, we may need to restrict his protein. The potassium doesn't seem to be much of an issue these days (although next week's bloodwork will confirm that). I might even start making potatoes again.

Oncology next week; "well-child" visit the week after. And then we avoid the doctors for a little while, we hope.

Feeling the nerves...

Today, The Boy has the second of four doctor's appointments. I'm a little nervous about today's nephrology visit. The Boy has been doing well with his blood pressure and has frequently not even needed his medicine. But even so, there is alway the possibility that something is going wrong with his kidney, remembering that the reason why he was taken off chemo was because of poor kidney function.

It is possible that they will order the GFR test again. Not a major deal.

Next week is the oncology appointment. 3 months (well, really 4 months) off treatment. He has a scheduled ultrasound and, I think, a walk-in chest X-Ray. This is where we find out if the cancer is really REALLY gone.

We still have no jobs at all.

Some women put their careers on hold for their kids. I destroyed mine, I think. I just wonder what my kids will say about me when asked, "what does your mommy do?" I would be fine with just being Mommy except that without a job for either of us, I still need to be prepared to win the bread around here.

Jobless rate is something like 9% nationwide, so I shouldn't be too shocked, but having spent my life being told that I am "special" and "talented" and "gifted" and all that, it is a real blow to be told otherwise by the interviewers that don't even dignify my efforts with a phone call.

So I'm nervous that two degrees and thousands of hours of work, for either of us (three for him) are worthless.

And all we can do is wait.

Wednesday, August 11, 2010

and...we're off!

Over the past few weeks, Meatball has been taking one or two steps at a time, mostly as a result of us letting go of his hands and him trying to lunge for something. Today, though, I was playing outside with him and he walked about 6 steps toward me! Of course he has no desire to do it again.

I'd say in maybe a few weeks he'll be done with crawling, but right now that's still what he prefers.

Today we went to the Spray Park in Beechview. It was fun! We know now that the kids would be better off in swimsuits, though. As would we. Because we got SOAKED.

According to one of the reviews I read about the park, they're putting one in at Mellon Park, which is in walking distance from us. Currently, there is one in Beechview, which is in the southern part of the city, and one in Troy Hill, which is north.

We plan to invite friends to come with us next time!

Tuesday, August 10, 2010

A simple solution, we hope

The Boy had his appointment with the gastrointestinal specialist today. We were very concerned about his pooping and the consistency and his difficulty in controlling his bowels as a result. We thought that it might be due to the radiation.

I'm not sure how definitive the answer was as to whether the radiation had any effect, but The Boy has been ordered to cut down on the fruit juice. I had thought about that awhile ago, but I guess it never really stuck. Fruit juice has a lot of sugar, and the sugar is the likely cause of his loose bowels.

Of course, I'd been trying to say on numerous occasions that I didn't want The Boy to have too much candy and sugar. For potty training or otherwise. Because I know it's not good for him. Particularly, it's not good for him as a cancer survivor, because cancer feeds on sugar.

It was more important for us to get the calories in him, hence the permissiveness with the juice, but I'm more than happy to scale back on the treats. He can have a little bit of diluted juice at each meal; the rest of the time, it's water or the occasional cup of soy milk.

So maybe the radiation made him more sensitive, but we're going to try cutting down on the sugar, particularly juice, and seeing how it works.

Thursday, August 5, 2010

You know it's vacation when...

You don't even bother to bring a computer.

I've been fairly inactive online this week. I have an iPod touch with me, but I can only use it for Internet when there is wifi. And currently, being at my father-in-law's house, there is.

Vacation has continued to be enjoyable, relaxing, and fairly low stress. Considering that travelling with two little children is a giant pain, and you start off the operation firmly in the loss column when doing so, we still managed to come out ahead so far.

Tuesday night, while Musical Daddy spent the evening with his old chorus, we visited one of my friends from when I was very young, in Mendham, NJ (those who know me well are aware that I have moved from Northern New Jersey to Pittsburgh, PA not once but twice). We haven't been great about staying in touch, but Facebook has been a helpful tool in friendship maintenance. Her children are very cute and very nice, and they're just a great family.

Wednesday was breakfast at The Original Pancake House followed by leisurely preparations for shorebound departure. We got a room in Seaside Heights last night. Apparently there was a shark there, but we missed him. We spent about an hour on the beach and then they "closed" early as they do on Wednesdays. Dinner at a restaurant with a much better quality of name than quality of service. Food was good but not that good. My chicken was clearly reheated and not cooked fresh. We spent the evening at Casino Pier, and The Boy rode on two kiddie rides--trucks, and a train.

Last night was great in the sleep department. Meatball went to sleep soon after we got back, in the Pack n Play in the coat-hanging alcove. He was able to sleep even with The Boy watching Lyle Lyle Crocodile. He woke once at 4:30 for milk and mercifully let me sleep until 8:30. The only down part was that I fell asleep in one bed and ended up by myself, as The Boy kept Daddy in the other bed and they crashed there. But we felt great after adequate rest.

This morning we went back to the Boardwalk. It was HOT this morning! We played some Skee Ball and Skee Toss (Skee Ball board at point blank range, for little kids like The Boy). We spent some time at Big Lots and headed to visit some friends who used to be neighbors of ours. They left Scotch Plains not long after we did, but basically to improve their quality of life. We did too, but they weren't fleeing catastrophe. They now have a great house on a big piece of property with a pool and easy access to the beach. The home is just right for them (and even allows their daughters to have their own bathrooms, useful particularly as they get into the preteen and teen years).

We then visited another couple. We have been friends with the guy since coming to NJ, basically, and we will hopefully continue to see them during most visits back here. They're great people, recently married. The guy worked with Musical Daddy for a year, then got involved with writing marching band show music, and then worked with me in my district.

On the way back up north to turn in for the night, we actually had to pull over to clip The Boy's nails. Really. One had broken a little bit and he was really bothered by it, so I took care of all of them.

Upon our arrival at the house, we tried putting both boys to bed. Guess who is STILL awake.

I'm not so sad about the reduced level of Internet and phone usage on my part. It means we've been having lots of fun and staying focused on having fun.

Tuesday, August 3, 2010

Can you tell me how to get..,

Vacation week is here and we're all in. Yesterday we left Pittsburgh and drove all the way across the state to the last PA Turnpike exit. The trip was mostly fine and well above average considering our travel companions. We stayed at a motel which was about 15 minutes from Sesame Place.

Also at this time I delivered some of my milk to a friend in that area. Happy World Breastfeeding Week everyone!

The motel was just fine. Much more important was the fact that Meatball slept in the pack n play in the same room as us with not too much of a problem.

Sesame Place is a lot of fun, but next time we'll do the 3 PM admission. It was hot and the kids were tired. Better for kids either older or more adventurous or both, to go right as the park opens. It is expensive to go just once, particularly paying full price instead of the 3 PM price. Kids 2 and up cost the same as adults.

There are lots of water attractions and they are somewhat intertwined with the rest of the park. Bring swim stuff.

Stop at the Burger King near there and grab a coupon, too.

Anyhow, fun was had. Meatball rode the teacups with us and did the carousel twice. He had a good time at The Count's Castle, which is a larger version of Wet Willie's at Sandcastle. The Boy did the teacups, the carousel, and played in the monster maze. They enjoyed Big Bird's Court, which had a bouncy play area.

The food that we got was really expensive and not really good. The pizza tasted like it was from the cafeteria at the school where I used to work, as it had a wheat crust (but not a flavorful one) and rubber cheese. I like that stuff ok, but I prefer paying $3 or whatever it was as opposed to $10. The chicken garden salad had maybe 5 little pieces of chicken. I tasted the macaroni and cheese and it was actually bad. And I'm not that picky.

I haven't tried the cookout there, which is possibly different and better (and more crowded) but you could just as easily bring something instead.

They do the parade at 2 and 7. I bet most people don't stay all day.

Following the parade, we let The Boy play with the rubber ducks. He was obsessed--you know the ones where you pick them up and win a prize? The operator was really nice about letting him just play.

The trip up to Grandpa's consisted of 30 minutes of napping and 70 minutes of Meatball purposely screwing with The Boy. Poking, prodding, not keeping hands to himself.

The Boy napped on Grandpa's bed.

I am SO tired. So to sleep I go.

Monday, August 2, 2010