Tuesday, December 30, 2008


The Boy did well at home this afternoon/evening. Dinner was intentionally simple--chicken, rice noodles, and some applesauce. We thought we heard "ch-ch-ch" in anticipation of being given chicken, one of his favorite things. Grandma and I had a good dinner as well, which included some frozen latkes that we never got around to eating during Hanukkah.

Well, The Boy was MAD that he wasn't getting any latkes, but we have learned to keep his diet simple post-pukies, so he could protest all he wanted. Instead, my mother suggested some fruit ice. I went downstairs to switch some laundry, and I heard, very clearly, "ICE!"

The Boy continued to insist on more "ICE!" It was fantastic!

Tomorrow night for New Years Eve, Grandma and The Boy will be dining on lamb chops and corn on the cob, assuming that The Boy continues to be in good stomach.

A man who knows what he wants

I'll start at the end by saying that The Boy did get his blood today without any unusual side effects. I think it made him better. I hope. Also, I don't think that we have to go back for any scheduled appointments until next week on Monday.

So. Great morning at first. The Boy was Mr. Personality, in a good way. On the way to his appointment, I heard that familiar sound of...not quite cough, maybe a bit of an inhalation, or whatever it was, but he usually does it a few times as a warning. Then up comes...everything. In this case, it was once in the middle of the highway and once again as we arrived. The carseat was a total mess. The Boy was a mess. I'll spare the readers any more details.

The time at the treatment center...always figure twice as long as they say you're going to be, is how long you'll be there. We stayed in the "quiet room" the whole time we were there, partially just to be away from other kids, and mostly to keep us out of trouble. Not all of the patients are cancer patients, and they are not all following the same precautions as The Boy. So we still do have to be pretty careful while we're there.

The Child Life Specialist got us a DVD player to borrow, along with The Wiggles. The Boy wasn't so into them (thank goodness). We brought along his favorites, and Beauty and the Beast, which we got to watch all the way through. He rather enjoyed it, too! Good music and such. He knows what he likes.

Interestingly enough, we were sitting on the rocking chair in the room, and he was gesturing toward the bed. I got in the bed and my mom handed him to me. He snuggled right up--he wanted to rest in bed.

He insisted on "jush" to drink and sucked down two or three of those little juice cups during his visit.

He likes to push buttons. In case I haven't mentioned it. Fortunately I prevented him from calling the nurses.

Must change gross laundry. Later, kids.

Monday, December 29, 2008

Kinda okay...

We did get to leave the center today, but he does need blood. Because it was already after noon when the counts came back, and they didn't have a current type and cross, they told us that we could either do it anyway and finish the transfusion on the pediatrics floor, or we could come back tomorrow for the transfusion, since it wasn't that urgent.

Which way do you think we went? Genius--we went home because we like going home.

We don't mind coming back if it means that we can spend the time in the outpatient center instead of on the pediatric floor and in a hospital room.

They had to access the port for the type and cross, and they decided to leave the needle in so that they wouldn't need to re-stick him in the morning. It bled a little bit, but not consistently, so we called the doctor. She said that it wasn't a major issue that couldn't wait until the morning.

I am concerned, though, that because his counts are so low that a blood transfusion could cause another fever like last time. Nothing to be done about it though...

Off we go...

The Boy has an appointment today. It's supposed to be just for counts. Hopefully that's all it is. The Boy is in great spirits, has been eating well and does not have a temperature. He looks good. But there's sometimes no way to know. If he has low white counts but is otherwise okay and has no fever, then we should be fine. Low platelets or hemoglobin means a transfusion. Still not a big deal, unless he then gets a fever, and then it's an automatic 2-day admission.

We will have The Boy phone with us. Our phones don't work, so call The Boy phone if you need to get a hold of us.

Saturday, December 27, 2008

Just a tiny scare (we hope)

The Boy woke up from a nap and he was in a Mood. I changed him and returned him to Grandma, and he was still in a Mood. Grandma was trying to get him to settle down and watch Goodnight Moon, but he was not having it. After I washed my hands, Grandma brought him back outside, and I insisted on holding him in my lap.

He felt warm. Warmer than he should. I took his temperature. 99.4 axillary--the magic number. The "call the doctor and don't be surprised if you have to come to the hospital and stay a few days" magic number. So I called.

The person on the answering service was none too bright. You'd think that if they answer phones for the pediatric oncology center that they'd at least have picked up a little something about pediatric oncology. Here's hoping, I guess.

I kept The Boy on my lap and continued to snuggle him. After a little while, he started to feel cooler. Sure enough, I took his temperature and it was 98.9 axillary. Higher than we'd like for him, but not high enough to require any special attention. Still no word from the doctor, but it looks like we're off the hook for now.

Silly stuff

o/~ Please don't burn down my kitchen...please do not break my things o/~ (an original march-like tune, sung during last week's cooking festivities which included two sisters who had started major kitchen fires in the last year)

o/~ I have a little present...I made it out of food... and when it's good and ready...then you will know I poo'd! o/~ (by Musical Daddy, sung to the tune of "I Have a Little Dreidel")

My mother and I went to shul last night--the first time in awhile for me. It's hard to go, especially when The Boy isn't well. I doubt that I'll be able to take him, pretty much ever, until he is done with treatment, although perhaps when he is on the "up" side of the blood count rollercoaster, we can think about it.

It feels good that...we're doing okay, still. The Boy has still been eating a lot, although he's had some food come back up a few times. He doesn't seem to be otherwise sick, and he really ate a LOT at breakfast, so perhaps he ran out of room in there.

Thursday, December 25, 2008

Merry Jingly

A good day, all in all. We didn't do anything really; we didn't even leave the house. Fine by us.

The Boy continued to eat like a horse. At lunch, he enjoyed kosher Chinese food AND a few pieces of Indian food--spicy lamb. For dinner he had a bunch of meat. Roast beef, Swedish-style meatballs, and some orzo. Unfortunately, some of it came back up after I gave him one of his medicines. The medicine doesn't taste great, I don't think, and a few times it has cause a rebound reaction. Hopefully, it was just a fluke. If he has any other pukey incidents, we have to feed him only the most ordinary foods. But he can still have his yogurt and oatmeal.

I slept for several hours this afternoon. I took a shower and decided that following my shower, I'd rest for a bit. I woke up an hour later when Musical Daddy came in from taking his shower, and then I went back to sleep. I watched A Christmas Story, at least most of it, after I woke up because I just didn't feel like moving. I don't think I'm sick, though--just exhausted. Once I got my tail out of bed following my long nap, I had a bit more momentum.

Regrettably, now I'm wide awake and I'd rather go to bed at a reasonable hour.

Hollow Leg and Yule Log

We're watching the Yule Log in HD. It really does look better.

Today's Christmas plans involve sitting around, watching stuff on TV, playing games, and listening to music. That's about it. And...enjoying being home.

The Boy didn't get the memo about losing his appetite this time, thank goodness. Even while getting his blood transfusion last night, he still ate the entire bowl of pasta with garlic sauce and assorted other food for dinner. This morning he ate a serving of applesauce, some yogurt, a little pancake, and some pieces of cereal, as well as some juice. Then, about 2 hours later, when my mother got out of bed, she had pancakes for breakfast. Oddly enough, The Boy also ate more pancakes at that point.

Remembering the pattern of the previous treatment regimen, he didn't lose his appetite right away after receiving a dose of medicine--it would take 5 days or a week, and he'd have less of an appetite for a few days from that point. The low point for blood counts is 8-10 days after treatment, so it makes sense that while he is in that "valley" of low numbers, he'd not be feeling as well.

In the meantime, we can enjoy the fact that The Boy is eating well and growing back that second chin that we love so much.

Mi Casa

We are HOME thank goodness. After a rather traumatic experience with the port de-access, we were allowed to leave, and that was that. Until the next visit.

The Boy was SO happy to be home.

Wednesday, December 24, 2008

Marching Orders

No fever. Just waiting to leave. Not counting on it, even so, just because...because.

Snaps to the oncologist for saying that since her patients spend so much time in the hospital, she'll let us be at home even if we have to leave here at some weird hour. Fine with us.

Can't Hardly Wait, or something

The Boy is with the incomparable Grandma, waiting for his blood to arrive. The oncologist said that IF he takes the blood well and doesn't have a fever, we can just leave as soon as the blood is done, if that's what we want to do. We'd like it if the blood would show up pretty soon.

Musical Daddy has his Christmas Eve gig with the church. They did one service and he'll be doing the next one at around 8:00. Wouldn't it be fantastic if he could finish the service and then pick up The Boy and Grandma to go home?! I'm not necessarily getting my hopes up, because I know better, but it would be a little extra Christmas magic.

I love Christmas. I always have. In high school, we sang such great Christmas repertoire. We even did a handful of singouts every year. I love the decorations and the music, and I get excited about the general atmosphere. I always recognized that I was getting involved in the public excitement of the holiday, and my family would do the same. We'd take a car trip to some of the fancy suburbs to look at Christmas lights. Once my sisters started learning some of the same songs that I knew, we'd sing them together. Christmas day was somewhat anticlimactic because I had nothing to do and the fun was pretty much over. But it was a very exciting time of the year. Even as I got older there were always fun things to do. Getting involved with, and later marrying, someone who did celebrate Christmas didn't change so much except that I now had plans for Christmas. Usually.

By the way, it is now 6:05. The Boy just got his Benadryl and Tylenol, required before receiving blood, and the nurse is going to the blood bank to get the blood. Maybe he'll be done getting the blood at 10:00, at which point we'll know what's going on.

I need to find something to eat. I was all excited for Chinese food and/or Indian food, but I don't think that my stomach can handle it right now. Maybe tomorrow.

We are NOT going home yet.

The Boy has very low hemoglobin and needs a transfusion, so we won't be going home yet. Sigh.

We had no indication. He didn't look pale, and he wasn't too draggy. They checked it twice, though. No mistake.

Everything else during this visit was fine.

Maybe we'll still be home for Christmas. We don't have plans, but that's not really the point.

Tuesday, December 23, 2008

Blankie is his name!

Today was my last day of work for a LONG time. Yes, ladies and gentlemen, by the time I return to work, I'll be 30 years old with two children.

I'll miss the job. I'll miss the interactions. I'll miss the excitement of the kids' performances and, even more so, the little achievements that happen from one lesson to the next. Filling up the sticker charts and such.

But I will not miss the constant anxiety of figuring out how to take care of The Boy while still trying to keep my job. The fact that this whole treatment process is SO unpredictable makes it impossible to do any sort of work. Furthermore, I already ran out of sick days.

Anyhow, I am snuggled up on the chair with the blanket that my mother made. It's special because it is very similar to one that she made for my brother. Special because she made it while she was being treated for cancer. And, of course, special because it's from her. Mom's the best.

The line "blankie is his name" comes from The Boy's favorite film, Goodnight Moon. I wrote an entire review on it, so I won't recount the entire film even though I could probably recite it from memory at this point.

I am relieved, like I can't even tell you, that The Boy has had such a pleasant and uneventful chemo stay. Last night was the only issue, really, in which he had swelling around his port and it had to be de-accessed and eventually re-accessed. They had to use the wrong size needle, and they had to put gauze around the access point. Normally, we tell anyone who tries that that The Boy's oncology team doesn't allow it, because it's just a breeding ground for infection. This time, they are using the gauze and changing the dressing frequently. Problem there is that the dressing itself is a sticky plastic thing called Tegaderm, which is a major pain when removing. Like a band-aid but different.

I also got to see, firsthand, the cotton ball trick. The Boy has to have cotton balls in his diapers so that they can measure urine quality, to be sure that he isn't getting any infections or any blood in there. Fun, right? Well, he has figured out exactly where they go. Take off the old diaper, get the new one ready, and put the cotton balls in his hands. The cotton balls go right where they need to go. What I'm wondering is, when they do the project in preschool where they make a snowman on construction paper, out of cotton balls, how is that going to go for him? In today's hyper-sensitive society, if The Boy does the wrong thing with the cotton balls because of all the time he's spent in the hospital with cotton balls in his dipes, will he get kicked out of preschool?

Other excitement: I went out for a lovely dinner with Aunt M, my cousin, and her husband. We ate at Shalom Bombay which is, as you can surmise, a Kosher Indian restaurant. I love Indian food! Sometimes it doesn't love me, but it seems (hopefully) to be sitting fine today. Maybe the fact that it is Kosher...?

Anyhow, The Boy gets out tomorrow. Hopefully next time around, we can get in the door REALLY early, start chemo at 9 AM or so, and then get discharged in the evening. But then, next chemo is "only" 3 days. It also does not require the extra medication to prevent kidney damage (somewhat ironic). One of the meds that he's getting next time is the one that has the potential to cause some upper register hearing loss. The audiologist who tested The Boy initially said that she had a Wilms patient coming off treatment earlier in the day who still tested just fine on her hearing test. Even if he does lose some hearing, my impression is that he won't be able to hear the "mosquito" ring tone anymore, but he'll be able to hear what he needs (the "mosquito" is a very high pitched sound that only younger people can hear because they haven't lost their upper register hearing).

Almost Christmas. Not that I have anything going on, and, oh yea, I'm Jewish, but I still enjoy it. We have plans to stay home and hibernate.

Saturday, December 20, 2008

Forced Reprieve

I have the sniffles, so I am not allowed to go near The Boy. Makes me sad because he's my boy and I love him. So, today, my sisters came and we got pedicures. This evening, we've been playing Rock Band together. I wish that Musical Daddy could have this kind of fun with us, but he's busy being a good daddy. I think they've been asleep for awhile.

I feel secure knowing that The Boy been responding well to everything so far. He seems to be having another good day.

Probably by tomorrow evening, when we have our Hanukkah party, I'll be clear to go see The Boy. I miss him.

Friday, December 19, 2008

All Safe and Sound

I left the hospital this evening with the knowledge that The Boy is so loved by the two greatest people in the world--my mother, who drops everything for The Boy when he needs her. She repeatedly says that her life is a piece of cake at home. Which is somewhat true in that she has a pretty flexible schedule, except for the whole kitchen fire thing. And my husband--I walked out to the parking lot and discovered that he had removed the snow from my car. SO sweet.

The Boy finished his chemo meds without incident. His dinner was also finished without much incident. Except when he dropped his applesauce cup, half-finished, and it went everywhere. After we had just cleaned the toys and playmat. Sigh.

Will give the full report tomorrow. Right now I think I forgot to close the lid on the washing machine. Again.

EDIT: no I didn't--it's just running quietly because it is not full of bluejeans.

Time keeps on slippin'...

Although we arrived at the hospital in the morning, as we were instructed, The Boy did not start his chemo until 5:15 PM (preceded by Zofran, of course).

A distinct improvement over last time, when the chemo started at about 10 or 11 PM.

The problem with the chemo happening at night instead of in the morning is that the second medicine that he gets every time is one that requires them to take his blood pressure every 15 minutes. Sometimes he sleeps through the process. Usually he doesn't. So we'd prefer to have it happen during the time when he--and we--are supposed to be awake.

5:15 PM still isn't great, because it means that the process, his dinner is interrupted. It is likely that he won't want to eat dinner while he's here. If he would anyway.

The first medication, which is the Cytoxan, is just about done, and the Etoposide will be coming in soon. The Boy is asleep right now--just our luck--resting with/on Grandma.

Let's get this going

We arrived at the hospital around 9:45. I spent a few minutes at the admissions desk, and then up we went.

The room that we're in this time for The Boy's treatment was the same room he was in when we were first admitted for his initial diagnosis. Granted, all the rooms look the same, but I have a memory for many things useless.

His port was accessed and IV hooked up a little before 11:45. They will hydrate him with the IV fluids, and once he is sufficiently hydrated, they will start chemo. So it should be sometime this afternoon, as opposed to the middle of the night like last time. We've learned our lesson in that regard.

The complex part of this whole operation is that the snow has really begun to come down, and I'm concerned about how that will affect overall hospital operations. The Boy's nurse said that they do not allow the day shift to leave until the night shift arrives. One by one, as replacements come, they get to leave. Laundry could be an issue, which was why the nurse hooked us up with lots of extra hospital gowns and bedding pads. Hopefully food will still work out.

Speaking of which... I'm hungry! Musical Daddy and I took advantage of the fact that I didn't need to work (and we were up anyway) to go to the diner for breakfast. I had chocolate chip pancakes. But then, that was at 7:15 AM, and it's now 12:25 PM. I'll go hunting for food soon enough.

I'll keep the updates coming. Our room is one that doesn't get great phone reception unless you have a certain carrier, which we don't. So if you would like to call, drop me an email and I'll send you the room phone.

Isn't It Grand

WAY too long between entries.

Monday was a concert. Tuesday was supposed to be a concert, but it got cancelled in the evening because of weather. Wednesday was a party at the Pancake House for our niece's birthday. Thursday...oy.

The concerts that were supposed to happen on Tuesday were moved to Thursday. There was already a concert on Thursday. This necessitated a change in the schedule and created a large concert. I'm not sure what was worse--the fact that there were kids who were unavailable and couldn't come due to the rescheduling, or the fact that there were kids who did come, but at the wrong time, and then they missed performing. A letter went to the teachers telling them about the time changes, but apparently some of the teachers neglected to hand out the letter. It was very telling that two students from the same class who are otherwise responsible ended up not making it in time. They were pretty upset. So were their parents. So was I.

The principal explained my situation to the audience at the end of the concert, praising my work in the school and letting them know that I'd be leaving to care for The Boy. He also asked for applause in honor of The Boy. The fans roared. I love these people. I love those kids. I'll miss them tremendously.

I wish The Boy had been there, but coming to a school with a compromised immune system is just...stupid.

Grandma is here. She's the greatest. We're leaving soon for his next inpatient chemo.

Oh, did I mention? No school today!!!! It didn't start snowing yet, but it seems like half of New Jersey had school cancelled. I won't complain.

Sunday, December 14, 2008

I've figured it out. Maybe.

Based on previous knowledge from The Boy's other treatment regimen, and based on his response to this one, I am speculating that each chemo treatment, at least by the end of it, is going to be lousy. We'll scale back his diet to include only the most basic and bland things, to be sure that he keeps food down. For the 10 days after he finishes the chemo, his condition will also be pretty lousy, as his counts will be dropping and he'll be getting more tired. We should be prepared for a neutropenic fever hospital stay during this time.

Then, he'll get better. He'll gradually begin to eat more of his usual food favorites. He'll play more. His counts will be better and we won't need to do neupogen shots for awhile. We can socialize too, provided that people aren't sick.

Then, we'll do chemo again and restart the whole process.

It makes for probably half the time being crappy and the other half being wonderful, because he's such a wonderful boy.

Friday, December 12, 2008

Great Day

Top to bottom, start to finish, it was a wonderful day.

This morning, The Boy enjoyed his oatmeal and yogurt for breakfast. He was very enthusiastic about it. Oatmeal is, and always has been, a finger food. It dries up pretty quickly. We mix it with a bit of honey, which doesn't do much for the consistency. Yogurt, however, requires a spoon.

The next item on the agenda was just the fact that my kids at school were really pretty good today. Because I'll be leaving soon and the concerts are coming up, in addition to reviewing concert music, my 6th grade students have been spending half of their lesson times, this lesson cycle and next, collecting stickers. We have sticker charts, and selected exercises or pieces are played for a sticker. Many of the students' collections were not so complete, for whatever reason. The pieces don't have to be "perfect" but need to be played competently in the group. It is very easy to see, with string students, who knows it and who does not, just by watching fingers and bows.

The Boy went for an appointment at the treatment center today, accompanied by Ms. R, and the expectation was that he'd need another blood transfusion. Our fear, as I mentioned, was another fever. When he arrived, as the nurses and child life specialist, and Ms. R, mentioned, he looked pale, and they were sure he'd need blood. Except...have you met me? Have you met my mother or my father-in-law? We're the whitest, palest, most colorless people you could meet, and it's not surprising that my child would share that trait.

They now know that appearances can be deceiving. The Boy had great counts--reds, whites, and platelets--and was sent on his merry way after enough of the bloodwork was back. His ANC is about 14,000 which means that we don't even have to do Neupogen shots for a whole week! Longer, because he doesn't get it while on chemo either.

Major props to Ms. R for staying 2 daytime shifts in the hospital with The Boy and taking him to this appointment today. Of course, she was paid for the time and paid a bit extra because I insisted on doing so, but still, no one signed her up for this kind of babysitting, and she was very helpful in that regard.

It appeared yesterday that she also taught him to blow kisses although I haven't yet gotten him to repeat what he did yesterday.

After we got home, we had a great snack. He had rice cakes--no longer allowed in the living room because they're very messy--and a little snack pack of applesauce as well as several bites of cottage cheese with cherry preserves. That's one of my new favorite snacks. I figured that since they sell "cottage doubles" with the fruit in them that preserves works just as well for extra flavor. I was glad to see that he enjoyed that one. Full-fat cottage cheese is a great snack for him because it is higher in fat--good for kids his age anyway--and calories.

When Musical Daddy returned home, we enjoyed some crazy baby time on the bed before leaving to go to a party at the hospital.

Crazy, right? A party at the hospital?

Actually, the party was held in the hospital auditorium and it was FANTASTIC. It was for all the patients and former patients at The Boy's treatment center. We're so glad that we went. There was good food (mostly kid food, of course). Most of the people that we had met during our numerous visits to the center were there, as well as the nurses, the child life specialist, and the two doctors that The Boy usually sees. There was a clown, a magician, amazingly detailed face painting (which The Boy wasn't quite ready for so we didn't try it), stickers, lots of music, and such a lively environment. All the kids were having a great time, and the adults seemed pretty happy to see the children enjoying themselves.

The Boy did quite a bit of assisted walking at the party, where we hold his hands and he walks. He's working on it, he really is.

He also put several stickers on his head.

Thursday, December 11, 2008

Little Stinker

He does this every now and then. Pretty frequently. He snuggles up on my lap. Then he falls asleep. And I'm stuck.

It's a very tricky situation. And one that many children outgrow at a younger age. But...such is life.

I love this guy. He's cute.

He enjoyed yogurt, both at breakfast and for a snack later. He had steak for dinner, and he couldn't get enough. Soy milk was also a relatively enjoyable drink.

Hopefully (TMI alert) he'll do a little better in the poop department now that he's eating a wider variety of food again and actually drinking a decent amount of fluids.

Wednesday, December 10, 2008

Home again

We were sent home, thank goodness. It just feels better to be home and all together, and not have the extra monkey on our backs of going back and forth to the hospital.

On Friday, The Boy does have to go back to the center for counts and, likely, another transfusion. Hopefully, he will respond more favorably this time to the blood. I don't even know (and maybe someone could tell me) if getting a fever as a result of a blood transfusion is normal. It doesn't seem too strange to me; they do give Tylenol and Benadryl before they give you blood.

We just switched off sitting with The Boy and trying to get him to sleep in his bed. It seems like for awhile it will just take patience, if we want him to spend any time in there.

Tuesday, December 9, 2008

Unpredictable, indeed

I'm going to make this quick because I'm really quite tired but I have to share all of what's going on.

Yesterday I had off from school because, I believe, it was a Muslim holiday. We have a fair representation of Muslim students, so it makes sense. We booked The Boy's pediatrician appointment ("well" visit...sort of) for that day, and that was our first stop.

We didn't wait long, but he said that next time, we won't be waiting at all. Just call, and we'll go directly into a room and that will be that. He said that The Boy looked good. He had lost a bit of weight but had still grown an inch. He also gained a bit of head circumference. Normally, they'd do a weight check on kids his age who lose weight, but he had just had a stomach virus, and chemo, so what do we expect? He also didn't seem too concerned about his walking and talking. He is almost walking, so that's good enough, and he'll make the switch when he's ready. He does say a few things, like "Mom" and "ap" for apple or applesauce, and a few times he's said "juice." After 18 months, we are to encourage him to say more things and point a little less, but right now he's doing what he's supposed to do, even in the face of what he has to experience.

After this was a visit to the treatment center. No matter what, I need to learn that he doesn't ever just go in for a "visit" there. I think that maybe once since we started with this has he ever just gone in for counts. His chemo treatments with just Vincristine were short visits, but so very rarely has he had just a finger stick, wait around for numbers, and out the door.

Yesterday was no different. Counts were crappy. Hemoglobin was very low, so they brought in some blood. That took quite awhile, as it usually does take awhile for blood to arrive and it is almost 3 hours of actual transfusion.

Usually, when a patient receives a blood transfusion, they get Benadryl and Tylenol, to stave off any possible effects from the whole thing. Also, more central to the story, a person getting a transfusion usually feels like a million bucks by the end of it.

But, alas, it was not to be.

The Boy was sleepy all day, as was to be expected with low hemoglobin. But he just didn't perk up, at all, after getting the new blood. In fact, his temperature, which was fine in the morning and only a little bit high in the afternoon, was even more elevated. And past the magic number. An automatic admission ticket.

The Boy's fever briefly visited 103 (although Musical Daddy is certain that it wasn't that high because he's usually pretty good at figuring out what The Boy's temperature is, just by touch). After that, though, it dropped down to normal and has stayed there ever since, B"H. His counts are getting better but still are not high enough for discharge.

I stayed last night; Musical Daddy is doing the next two nights. We don't know when he's getting out. Well, we do, but as per usual, discharge comes as a result of meeting criteria, not as a date or time in anyone's planner. So when his ANC is over 500, he's good to go. He has been on Neupogen for over a week. Let's see it work its magic.

Sunday, December 7, 2008

A few positive oddities

I meant to do nothing today.

It really hasn't been such a bad day so far. Rather pleasant, actually. The Boy and I slept in past 9. I drew up his medicines...and made the decision that we were going to push back the shot to later and later in the day, so that it would be in the early evening, which is actually convenient, instead of in the morning when we're rushing. I also heated up his cereal.

He got his blood pressure medicine, in applesauce, and clearly was interested in more. Breakfast for him was rice cereal with a little bit of honey, and applesauce. He has become quite adept at spoon use over the past 2 weeks, which has made feeding him his plain post-illness post-chemo diet that much easier.

We played in his room for awhile, with a few toys. I should mention that we never play in his room because for quite awhile, it wasn't really such a place for playing. Then he started to get a little tired, so we sat in the rocking chair, and I read him a Winnie The Pooh story. It was the one in which we learn that Tiggers don't climb trees. At this point he was definitely sleepy so I decided to go for it.

I put The Boy in his very own bed.

He protested, but he needed only to be snuggled a bit...then for me to hold his hand, and all the while I was reading the next story. It's much easier than trying to get him to stay in a crib, because I could just sit next to him on the floor. Then I let go of his hand, as he was clearly asleep, but it still looked like he was watching me. Very carefully. I sat for just a bit longer, and then I got up to take a shower.

He stayed asleep for almost an hour and a half. I was able to shower and relax before Musical Daddy returned from rehearsal.

Uncle B and the California cousins were on iChat as The Boy woke up. Then, time for his Neupogen shot. It's hard to do this to him, every day, but he gets Daddy snuggles immediately after, and as I'm preparing to do it, I tell him, "I know it hurts, but it's SO good for you." Not much consolation, but at least he knows that he gets hugs afterwards. The hugs are just as helpful to Musical Daddy, I'd imagine.

We watched a football game that we'd rather not talk about. The boys fell asleep for a little while, and I went out to (finally) pick up some prescriptions. Upon my return, I cleaned all the stuff out of my car. Perhaps tomorrow I'll run the vacuum cleaner in there. It's been quite awhile since I cleaned out my car, and every time I got in it, I would feel overwhelmed by the fact that I didn't have time to clean it out.

One less problem to worry about, at least. To continue the idea from my last entry, it really does feel better to unclutter one's life a little more.

Feng Shui

I haven't read it and I don't know much about it, but it feels pretty good to start organizing things around here.

The Boy has a nice neat bedroom, complete with new toddler bed (this is actually the one that he has). We have a new bed, and we each have new dressers. Additionally, we got two more items in the same set so that we actually have more drawer space. Our stuff is from IKEA. Most of it was bought on sale during black Friday.

We haven't had much time to shop for much of anything or buy any "treats" in awhile.

My aunt started the process by getting a toy organizer for the living room and another shelving item that is made up of 9 cubes for The Boy's room. She also got those large wire shelves, one for the guest room and one for the kitchen. You see these shelves in restaurant kitchens.

That's what we've been up to today. Additionally, Musical Daddy's brother installed two ceiling fans, one of them with a light.

The Boy has been very sweet today, although in need of extra snuggles. Not a problem. Mama will provide.

Friday, December 5, 2008

May you live in interesting times

A curse, for sure.

This has been a truly "interesting" week for all of us. The Boy was discharged from the hospital, finally. We were initially expecting a Monday or Tuesday discharge, not Thursday evening, but so it goes. Complications from the stomach bug that he had meant that it was even more difficult for him to keep food and fluid in his system. The oncologist emphasized the importance of hydration following the administration of Cytoxan (Cyclophosphamide).

Backing up a bit: The Boy is getting three medications during the course of this treatment, each one scarier than the next. All cause the traditional cancer/chemo side effects such as hair loss and nausea, but each one also has its own little bonus gift. Cytoxan/Cyclophosphamide can cause sores or other damage to the kidneys (kidney, in The Boy's case) and bladder. He gets an additional medicine called Mesna for that. Etoposide, is a chemotherapy agent that has a greater risk than some other agents of causing blood cancers (i.e. leukemia) later in life. It also causes drops in blood pressure; while it is being administered, The Boy has his blood pressure taken every 15 minutes. Carboplatinum is another fun one: it can cause upper register hearing loss. The Boy had a hearing test just prior to his treatment, and he did perfectly.

I am not incredibly concerned about the hearing loss. The audiologist said that she had just tested another Wilms Tumor patient who was at the end of her treatment, and her hearing was still fine. Even so...any readers familiar with the Mosquito ring tone? It is said that people over the age of 25 or so cannot hear this sound, so kids use it as a ring tone. Too bad for them--I can still hear it quite well. Anyhow, The Boy may end up with the hearing of a 30 year old at age 3. While that's a drag, I'll still take that over not going all out in the fight against this cancer.

At this point, I am looking forward to finishing my job and all the obligations entailed within. As much as I enjoy my work, The Boy and I need the flexibility. I don't want to hesitate to take him to the treatment center because of work. I don't want to miss my kids at work, either.

A diversion: I don't know who of my students or colleagues reads my blog; as a result, I rarely talk about work beyond the occasional remark about having had a good day. Today, though, I feel the need, because I have nothing to say that is negative, damaging, hurtful, or anything like that. Because I'm not 12 and trying to hurt someone's feelings by leaving a nastygram on their myspace. Anyhow...I was working with some kids whom I will REALLY REALLY miss. I had three guy cello players and a viola player who had missed her lesson earlier that day. The viola player has a great personality. She is also a good player but her personality is what makes her stand out. The cello players are all very serious. Not really...as in, they are silly kids, but when it comes to playing, they get right down to business.

Last schoolyear, I had a truly amazing class of 6th grade students. My colleagues and I have discussed it; this class is going to be one of those really special groups that comes along only once or twice in a decade. They say that the kids who just graduated from the high school in the orchestra were that kind of class. These kids are the same type. Instrumentation top to bottom is incredible. Probably 17 of those kids are nothing short of incredible. And another 20 are strong and competent, really fine musicians, and even the ones that aren't the best are still capable and willing to learn.

I talk about this other class now, fondly, because I thought today, while listening to these three gentlemen play, that they had really taken their places as leaders on their instruments. I was concerned that the holes left by the previous class would be hard to fill, but they got it done, for sure. I was similarly impressed by the young lady playing the viola, and how far she has come, but it's not such a great year for violas in the 6th grade. Not so many.

By the way, parents, the viola is a great instrument option for a child in school looking to play. There are not as many players, meaning that your child will get extra attention and be able to move up the ranks more quickly. It is not much more expensive than a violin (and usually, to rent one costs the same). It's the thing to do if you're a bit more of an individual who doesn't have the guts to play bass.

No, I didn't mean that.

So...back to my reality. How sad, when thinking about work is the diversion.

The Boy was, indeed, discharged yesterday evening, but he had to return to the treatment center (outpatient) because he failed to keep his breakfast down. They kept him there until it got close to closing time, giving him IV fluids, and then they sent him home, thank goodness. We are under strict instructions to keep his diet REALLY simple.

Dinner tonight was cream of rice with a little dab of honey (a pleasant sweetener, and good to use now that The Boy is over a year old) along with applesauce. The Boy handles the spoon pretty well these days. He had, from time to time, worked the spoon a few times to get some pudding or yogurt, but during his hospital stay, he happened upon some ice cream and that was all the motivation that he needed to use a spoon. Mashed potatoes are handled similarly. Very cute: last night, The Boy was feeding himself applesauce. He had requested it after being given his usual blood pressure medicine crushed in it. He ate about half of the little container (you know, one of those single serving with the foil lid), and when he felt that he had had enough, he pulled the half-opened foil lid back onto the cup.

The Boy has been asleep on my lap for nearly an hour. It's so nice to get these snuggles.

Monday, December 1, 2008

If this isn't the bottom of the barrel...

Musical Daddy is sick and in the hospital. Technically hasn't been admitted but he's been there since last night.

I'm sick too, and at home, by myself.

My parents are with The Boy. Grandma stayed over again, and she is very tired, so Grandpa is helping out too.

Musical Daddy's father is away on a trip.

I can't really miss more work but I have to because I can't stand.

I don't even know what's up with The Boy because no one has called me in hours, nor do I know what's up with Musical Daddy.