Thursday, April 30, 2009


The Boy just fell asleep next to me. What a sweet little snuggle guy. Pretty much out of nowhere. We watched a Sesame Street episode, and, despite his loud request for "Elmo!" I put on the "You Can Fly" singalong songs. He was asleep by the second song.

I'm here for the evening while Musical Daddy is at rehearsal. I'll go home when he gets back, return in the morning, and by lunchtime, GRANDMA will be here!

When I spoke with her, she said that she'll still be here for chemo, whether she just goes home and comes back or stays through. I guess it will also depend on when they actually do start the chemo. She said not to worry and that David is the most important person, so she will do whatever he needs. She is amazing.

His platelets were in the 50's and they need to be in the 100's (thousands...but when they give the counts they just give those numbers). So he has at least some platelets.

It's frustrating. It's maddening. And every time I go home and look out the window, I see that swingset that has never yet been played upon.


No chemo; platelets are too low. But we are still stuck in "jail" as if we were, yet we have to come back again. Crap. And crap again.

Get Smart

It seems to me that every time The Boy is stuck in the hospital, he gets smarter. Not when he is actually sick, but perhaps when he is bored, he figures that he may as well learn something. He has said so many words and knows new numbers and letters. And he is extra cute.


The Boy is taking his regular BP medicine twice, another med once, and then he gets a third liquid med as needed. It is a tiny drop of something that smells like toothpaste. Every time his BP is too high, he gets this medicine. It is called Pro-Cardia.

Except that every time he gets it, he gets really mad. Last night and this morning he was irrational for several minutes afterward. What I mean is, he was not doing anything except yelling "AAAAH" with some tears, but not a hysterical cry. Like a traumatized child who has suddenly lost 50 IQ points. Just now he got it again and was a bit better, because he was snuggled up to me and found his thumb. I let the nurse give it.

So if this extra medicine is supposed to help his BP but it stresses him out--does it really help?

Good nap and good lunch today. And of course, since he was upset by the medicine, I did give in to his request to watch Elmo. I have been trying to ration Elmo, by sometimes putting on something else that I know he will like after a few seconds of complaining that it isn't Elmo.

I would be a lot happier if he didn't have an Elmo habit...

Maybe seeing the end...?

Since chemo starts tomorrow, and we know that a chemo stay has a definite end...all we have to do is keep The Boy from having any more problems between now and then.

Unfortunately, the blood pressure is a bigger issue now. Initially, the nephrologist said that it was mostly caused by the IV fluids, since she ordered all kinds of other tests to rule out an actual kidney problem. I think it's still the IV fluids, along with just the hospital stay and fighting infections and processing meds...basically, the hospital is making him sicker, so we have to get him outta here.

I left before dinner last night to go home and then go to orchestra rehearsal. I didn't even stay the whole time, but I'm still glad I went. Daddy stayed last night.

This morning when I put The Boy in his chair for breakfast, he started hacking and coughing and gagging, eventually bringing up a big hunk of mucus. He was upset but felt better after about 30 seconds, after which he ate about 1/2 cup of yogurt. Minor issue; major production.

Now we're watching Sesame Street until the real breakfast arrives.

Wednesday, April 29, 2009

hospital help

I can't even imagine what it would be like if I had to wait for everything that we needed or ask the nurses to get stuff for us. It would take forever.

I would really like it if the nurse would close the door when she enters and exits the room. I'd get up and close it myself but there's a boy on me.

If I didn't bathe The Boy, he wouldn't get bathed. If I didn't get clean sheets, we wouldn't have had them since Friday. At home we change the sheets once a week, but in the hospital we really like to do it every day. Not just because we don't do the laundry but because enough stuff gets on the sheets. And I feel like I sweat more in a hospital bed. The Boy does too, I think. If I didn't take the food tray down or ask the nurse to do it, it wouldn't happen. The person comes around once and skips us a lot of the time even if we are done.

There has been an issue with The Boy's IV, where if it is pulled even slightly, or even if it isn't, it beeps and says that there is air in there. I asked for new tubing and of course it happened again...but hopefully it will be fine from now on.

Rise and Shine

The Boy was asleep early last night. He was up at 5:45 and asked to watch Pooh. The movie is over an hour, and we stayed in bed until it was finished.

He ate yogurt, lots of it, and a bit of rice cake. He also ate when his actual breakfast arrived--some hash browns and ketchup, and a few bites of egg.

He is feeling well and is in a good mood.

Just now, the radiation oncologist and the nurse from that office stopped by. They are SO nice, and they love The Boy. He likes them too--he has no problem waving and blowing kisses at them. His primary oncologist says that he doesn't wave or blow kisses unless he knows that she is sending us home. Stinker.

We have had today's nurse once or twice before. Not a favorite but no issues. I don't think we have any "issues" with any nurses that we have had, at least in this hospital...but some of them have to be favorites and others less so.

Tuesday, April 28, 2009

Who's your number one?

I forgot to mention that this evening, we were webchatting with Grandma, and then with Aunt W. As soon as Grandma passed off the computer so that Aunt W could see The Boy playing with his Magna-Doodle, he started getting mad! He wanted to see Grandma and that was that!

Works like magic

It is only a bit after 8 and The Boy is already asleep. He seemed pretty tired, so I put on Goodnight Moon. He was asleep about 5 minutes into the movie. He was happily saying "hush" during the Goodnight Moon story and drifted off at some point before The Nightmare in My Closet.

He did not nap as long as he had been while here; this is not too much earlier than he normally sleeps at home but quite a bit earlier than has been his habit during this hospital visit.

Tonight we have another new nurse. She is young, and she seems very thorough. She told me exactly what she was going to be doing when and asked me how to do things like take The Boy's BP and temp in the least disturbing fashion. She explained several things that I already knew, but I'd rather that she tell me too much than leave stuff out. She also asked about which way to walk around in the room--I said not to step on the playmat.

I'll be picking up the toys after I finish this entry. They were all cleaned during The Boy's midday nap.

The plan, as I sketched it out, is a bit different. I'm here tonight and was here last night. Musical Daddy has chorus tonight, and contest is this weekend. He'd be arriving here pretty late to relieve me, and then I'd have to go home and come back. Tomorrow night, I'll be going to orchestra and going home from there. I have to arrive at the hospital earlier on Thursday, but I'll at least get the scenery change. I'll probably stay Thursday night, since Musical Daddy has rehearsal and the same sort of thing--he'd be getting here pretty late to relieve me and it wouldn't really be worth it to go home at that hour.

Then, on Friday, Grandpa (my father-in-law) will pick up Grandma (my mommy) at the airport. They'll be here for lunch.

I'll go home after lunch to be there for the bath fitter guy, and I'll do a load of laundry while that's going on. I'll return to the hospital for dinner with Grandma and The Boy, and then I'm going to a concert!!!

Just keep going...

No more Vancomycin. No more Neupogen. Just Flagyl, until chemo.

Oh yea, and some anti-fungal for the diaper rash that he has developed...combination of over a week in disposable diapers and no naked time.

Grumble. Whac-A-Mole anyone?

BP's are high but not too bad, so his docs aren't concerned.

Grandma arrives Friday around lunchtime.

Timing is everything

He's almost done with the course of Vancomycin, I think...he could have possibly been out of here if not for the stupid C. Diff.

Last night, the nurse wasn't great at doing things to avoid waking us up. Grumble. We haven't had her before. Definitely not a favorite

I kept The Boy in bed, watching Pooh (which he requested as soon as he got up) because the nurse said that she was going to draw labs. Again, poorly timed. So she drew them while he was having yogurt and rice krispies.

Speaking of food, it is 9:15 and breakfast has not been served.

Our nurse today wiped The Boy's thermometer with alcohol before using it even though she knew it was only his. We're definitely on the same page. I asked her why it was that the protocol for infection control did not include shoe covers. Of course, we are careful about things on the floor but it is impossible to be perfect with it. Visitors remove or cover shoes; the staff doesn't, so why would they not cover them to prevent things going from room to room? The nurse agreed that it was a good question.

We havne't had this nurse before; she is chemo-certified but is avoiding chemo patients because she is trying to get pregnant. I happened to slip some cloth diaper propaganda into the conversation...griping about the expense of the disposables. Of course we have to bring our own to the hospital whereas if we didn't it would be cheaper, but's astounding. Comparing that to reusable ones that can be used for subsequent kids, there's just no question.

Breakfast arrived now, and The Boy likes eggs and potatoes again. He actually ate some raisin bran and milk as well. Just a few bites, anyway.

His blood levels were pretty good today. Whites are way up so he'll be off neupogen. Platelets are fine, and hemoglobin is okay too. He got both of those twice during this stay.

Housekeeping also hasn't been here. It would be great if they'd come around the same time every day so that we could plan for it.

The nurse just told me that she is calling infection control today to ask about the shoe covers and also to ask about a better way to manage the diaper-weighing, because currently, the nurses take the diapers out of the rooms to weigh them, regardless of infectious or toxic status, and it would make much more sense to have separate scales and cans in the rooms. I never even thought of that--good thing she is the nurse today.

So that's where we stand today. Our niece was going to visit, but she said that her throat is sore and she's not sure if it is illness or allergies, so I told her to wait until tomorrow. That's all for now--sure to update later.

Monday, April 27, 2009

Kidney, and a new week

It works. That's what the nephrologist said. His first ultrasound and his urinalysis were fine. He had another ultrasound today, this one in the vascular department to check how blood was moving through there.

A new week means a new needle, so The Boy is free of his tubing again for now as they wait for the EMLA cream to work and they can reaccess him.

Once the reaccess happens, he's due for more blood. His hemoglobin is still in the toilet. You wouldn't know it, to watch him play and jump around like a crazy man. Although if anemia causes extra hunger, certainly that could explain his performance at lunchtime.

He did not get to have a snack, although he ate breakfast in shifts. The first a bit before 7; the second at about 8:45. Yogurt and rice cakes. No interest in anything else. So he went from then until almost 1:00, because lunch was late getting here. For lunch, he ate his chicken leg, rice, a few bites of broccoli, two slices of turkey, and several little bites of pastrami.

The music therapist came and The Boy had an excellent time. The child life people also brought some fun crafts--stickers, foam, glue--we'll probably do that tomorrow.

Going to give The Boy a bath while he's free.

A message from The Boy:


He likes pressing the number and saying "two" because he is smart.


He also recognizes the letters in his name, so there went another note from him.

That's all.

Come Grandma, it'll be alright

Since chemo is approaching, my mother is coming! She may even come a day early, with a friend.

The outlook for the rest of the week is as follows: I'm with The Boy today, then I go to a doctor's appointment while a volunteer from Chai Lifeline watches him, and Daddy is at the dentist. We should both be returning around the same time, 5:30 or so. I'm staying tonight. Tomorrow is another day. I'm here. Daddy comes back after school and then goes to rehearsal. He'll stay tomorrow night. I'll arrive at 7AM Wednesday, stay the day until Daddy arrives, then go home and go to orchestra. After rehearsal, I'll come back and Daddy will take my car home so I don't have to worry about my instrument.

On Thursday, we'll do our walk in the afternoon. We may even ask to break The Boy out for it, although I doubt that will happen. We'll probably get coverage, either from family/friends, or from Chai Lifeline. If Grandma comes Thursday, she'll be here at 5 or so. I'll spend the evening with her while Daddy is at rehearsal. Because I love my mommy. If she comes Friday instead, that's okay.

Soon, though. Soon Grandma will be here.

Sunday, April 26, 2009

The verdict:

The first reason for our stay in the hospital is almost irrelevant at this point. He was admitted because of the fever, kept because of a positive culture despite the second culture being negative, and while here developed an infection as a result of the antibiotics. The sort of thing where solving one problem causes another.

The treatment for the C. Diff. is IV over 10 days. They can do it orally, but that is an impossibility with someone who is little and stubborn.

Translation: we're here through his next chemo. Which means that the earliest we'll be out of the hospital is Tuesday, May 5th, late at night.

Also, he will be getting more platelets today and more red cells tomorrow.

Good news is that he actually has an ANC over 1000 today. Once he has an ANC over 1500 for 2 days in a row, he'll be off the Neupogen.

This will be the longest hospital stay we've ever had for him. And the kicker is that even if for some reason he does not get chemo (which the doctor says he should be getting), we'll still be in the hospital until Tuesday, May 5th, because of the C. Diff. treatment.

But eventually we'll get out and play on the swingset.

Still here...

No major changes. The oncologist is in the building but hasn't gotten to us yet.

Today's blood pressure has been either low or normal, so he did not get his extra dose of medicine. He is back on the IV, but his drip is extra-slow, just to keep the line open. I think that has made the biggest difference; he does get puffy when he is on IV for too long.

He is a little tired this morning. That's okay--so am I. We slept fine, but we were up in the middle of the night for some stuff. I don't remember what. The Boy was content, so I didn't bother getting myself out of bed to put anything on TV.

I hadn't watched Goodnight Moon with him at all this visit, but last night we watched it twice. He has been asking for what he wants to watch. It's pretty funny. This morning I was able to convince him to watch Classical Baby, the art show and dance show, even though I think he initially wanted Winnie The Pooh. That's what we're on right now. Again. But it's so pleasant.

Musical Daddy got us some Sesame Street short shows. I was glad because it was new stuff to watch. They even had one about dealing with severe illness/hospitalization. We watched it this morning, and for some reason, it made me cry. And it takes a lot for that to happen. I guess I have to be in the right state of mind, or the wrong state of mind if you want to think of it that way.

The Boy ate yogurt and rice cakes before his breakfast arrived and was not interested in anything on his tray when it got here. He ate three slices of turkey cold cut and drank an entire cup of juice at 10-ish. Now he is asleep for his midday nap. We are awaiting the arrival of my aunt and uncle. I find it very interesting that they live 2.5 hours away, yet she is so willing to get in the car and come here (so is he but she comes more often by herself), but other people who are much closer to here or to our house make such a fuss about the trip. Ah well--my Aunt Fran, z"l, always said that you do what you want to do. As in, if there's something that is important enough to you, you'll make it happen.

Saturday, April 25, 2009


Here's the latest: C. Diff. For those who know hospitals, you know that it's pretty common. It is infectious and contagious...kind of. Many people have this bacteria occurring naturally in their bodies. When on antibiotics, or immuno-suppressed, or both as is the case with The Boy, it can become a problem. Diarrhea is a symptom, although The Boy had that for several days before testing positive for C. Diff.

Generally, healthy people don't get it, especially if they take typical contact precautions. Musical Daddy and I are both feeling a little gastrointestinally distressed; hopefully it is stress and different eating patterns and not C. Diff. If either of us has it, we'll get treatment for it as well. I called my OB office to check and see what to do. The doctor was not too concerned but said that if I have symptoms by Monday (and I have an appointment anyway), they can order a stool culture.

Never had to do one of those before...

So let's check and see how I did with my motivational ending paragraph in my last post. I cleaned out The Boy's drawers and broke out the summer clothes for him. Some stuff from last summer will still fit, at least through the spring. I cleaned and sorted, and rotated, The Boy's toys and did some cleaning in the living area. I cleaned The Boy's booster seat and discovered that it has a second height setting (we switched him to a different chair and it is a bit shorter). I straightened the bedroom. Those were all the things I wrote; I also did a bit of laundry and cleaned the bathroom. I rested some, but mostly did housework, so I'm tired.

It's starting to get to me, being in the hospital. The Boy is such a sweetheart, and since I'm so used to the hospital routine, it is pretty easy to get decent rest while here. As I said, I like the bed that we got because I can actually sleep on my back. But Musical Daddy and I don't get to spend the time together, and of course we've slept apart all week. When I've been home, it's lonely to be without him and The Boy. When in the hospital, I'm with The Boy who is so sweet but without my husband.

We've been really lucky thus far; now we have to have a crappy time. I guess we were overdue for it.

Friday, April 24, 2009

Where We Stand

Here's the story, as we know it.

The doctors have decided to treat The Boy as if the first culture were entirely correct and that the second culture meant nothing. They say that treating it with both meds and treating for a worse infection than might actually be there is a better course of action than banking on the fact that treating something less severe will do the trick. As in, better to have it and not need it than need it and not have it. I can accept that, I suppose--I still wanted them to get their stories straight about when what test was done, so that at least they know.

As I said, I am a bit concerned about him being on the strong antibiotic and then later having it not work. But that's neither here nor there, since he has already gotten it.

In terms of the blood pressure issue, nothing specific in terms of kidney function seemed to be wrong. As a side note, the ultrasound tech said that his kidney looks like...a kidney. Not like a kidney with a chunk out of it. The chunk was taken from the inside, I believe. Anyhow, they took The Boy off the constant IV drip, which is also nice because it means that he is off the leash for most of the day. He just gets it for about 2 hours, 3 times a day, with many of those times being while he is asleep or almost asleep.

Of course it means that he wants to leave the room, and I doubt that with his white count still being low that it would be acceptable.

I think I mentioned that he went from .4 to .7, and they actually did a differential today. 100-something ANC. That is good news because when there is a marked difference between the ANC and the white count itself, it means that the rest of the white cells are on their way up, to becoming grown-up neutrophils. Hooray!

The antibiotics course is 10 days. The doctor said that once his counts are back up, they can arrange for in-home infusion and he doesn't need to stay here. Especially since everything else that he is doing is pretty typical.

His appetite hasn't changed although his tastes have--can you believe that he didn't want eggs two mornings in a row?! Breakfast was Rice Krispies and yogurt. Nearly a whole serving of Rice Krispies and 1/2 cup of yogurt. He doesn't mess around. Lunch was chicken, rice, and he actually ate broccoli for the first time in awhile. Smart kid, knows what he needs--he has eaten so much rice this week, and it's a good thing, as I've mentioned, because of the poo. Even that was getting closer to normal today.

Anyhow, I'll be at home tomorrow, all morning, for the swingset guy to install the swingset. Then Musical Daddy and I will switch places, and he'll go home. I'm going to rest a bit at home and do some housework. I'd like to clean out The Boy's drawers and maybe break out the summer clothes for him. I also want to clean and sort toys and clean the living area. I'll straighten in the bedroom as well. If I write it all here, where you all can see it, there's a pretty good chance that I'm actually going to do it.

Let's see which of us is crazy

I just had an exchange with The Boy's oncologist regarding the treatment of the infection and the timetable of events since we got here. I'm currently looking back through my entries, since I've written down pretty much everything that has happened since his admission, to see which of us is crazy.

I'm not sure exactly which happened first--the administration of the first dose of Vancomycin or the blood draw for the second culture. I know that I wrote about him requiring Vancomycin before I wrote about them redrawing the blood. Either way, the second culture was taken after he had received either no doses or one dose of Vancomycin, meaning that the Vancomycin should not be given credit for the second blood culture being negative. He had had 24 hours of Cefepime at the time of the second blood draw.

The doctor wants to keep him medicated so that nasty bacterial infection doesn't win. Those are dangerous. I get that, completely. However, if he is on two medications and the first one did the job without the help of the second one, I'd rather that he not get the second one because then when he does need the second one at some other juncture, it will actually work.

I was pretty irritated about that whole exchange because it seemed like they didn't have their information straight.

Why do I even know what a nephrologist is?

Just after I wrote my last post, the nephrologist came in to see David. I've seen her several times and brought The Boy for an office visit, but she still introduced herself. I guess as a courtesy...she is very nice and very polite.

She said that some of the problem could be just the amount of fluid that he's had to process. He has had two transfusions (one each of blood and platelets), and he has been on an IV since he has been here. The drip is a bit over an ounce an hour, so not too much. He does look a bit puffy. He also has a bit of the swelling in his scrotum.

She has ordered another urinalysis, and he will be having an ultrasound of his kidney. If he had both, they'd do both, but you know.

He is also back to having his BP med twice a day, for now.

Another day, another bother...

High BP yesterday evening, normal overnight, and high again this morning. The nephrologist has been notified. As I said before, I can't think of any reason why this would happen.

White count is up to .7, which is definitely better. Platelets are back down; they got a boost from the transfusion, have stabilized, and will likely be on their way back up.

No breakfast yet; it should be here in 15 minutes or so. The Boy was eating a rice cake when I arrived but wasn't terrifically interested.

His temperatures have remained normal. And he has remained cute.

Thursday, April 23, 2009

I've had more productive weeks....

But such is life.

Still negative on the second blood culture, yet they are still giving him the two antibiotics--Cefepime and Vancomycin. Both are broad-spectrum; the Vancomycin is much stronger, I believe. The second culture was drawn after he had had a day's worth of Cefepime. They still want to keep him on at least one of these antibiotics while his white count is still so low. It should go up in the morning, hopefully by a good chunk, but I'll take another .1 increase because up is good.

High blood pressure this evening, which concerns me. He did take his medicine today (I think) and has taken it reliably since he's been in the hospital. I did have them move it back to the evening, which mean that he went longer than a day without it, but he has missed doses before and then gone to appointments the next day having 90/50 BP anyway. Hopefully this is just...I don't even know what it could be. That's what is frightening, because I can't rationalize it away, nor can I find a bright side to look at with this issue, only hope that it just goes away and that it was a fluke.

I guess that's close enough--maybe it's a fluke, is my logical and rational explanation for why The Boy had blood pressures that are probably worse than my mother's. They take the same medication, by the way.

Musical Daddy is more likely to see the worse side of things. Not that I'm a sunshine-and-lollipops person all the time, and not that he's so doom-and-gloom, but I'm more likely to say that we'll wait and see how something turns out, or that I trust that it's going to go smoothly because there's no logical reason for it to go otherwise. And if it's bad, we'll manage anyway.

So...somehow or other, we'll get an explanation for what is up with his BP. Or maybe he wants to have high BP for a month or so in order to use up that really expensive medicine that we had to buy after his stay in Philadelphia. I don't know if I've mentioned this before, but they are REALLY into using lots of medication down there at that hospital. No, we don't want to let him eat yet even though he did poo--let's just drug him some more.

Anyhow, moving on...

Last night and tonight, Daddy is staying with The Boy. They haven't had much time together this week. Tomorrow night, either I will stay or we'll both stay. That might be nice, because I actually like my family.

Knowing what he needs...

Smart boy.

He has been eating lots of yogurt today. He is also very enthusiastic about rice. He must have some sense that his body needs those things to counteract the awful poo.

Keep thinking negative!!!

The second blood culture has, so far, grown nothing! It can take up to 48 hours for it to do so; tonight we'll know for sure if anything will grow. It has already behaved differently than the first culture, which grew quickly, in less than 24 hours.

So what does this mean? Well, either The Boy has no infection at all and someone screwed up or, more likely, he did have an infection but the first antibiotic is treating it. If we learn that, he will be kept on the first antibiotic only, until his white counts go up again.

If he does continue to need Vancomycin, he'll need it for 10 days. The doctor said that perhaps he could receive the treatment at home, but only after his white count is okay.

White count was up from .4 today. A whopping .5! But any rise in white count is good.

Three poos this morning. The one I'm about to change will make four. Typical response to the antibiotic, but still icky.

Wednesday, April 22, 2009

Little Pain

They brought in a crib. The nurse says that there's no expectation that we have to use it for anything other than storage and a changing table but that if it's not there, she could get in trouble. She's a nurse that we have frequently, and we always like her, so I can certainly sympathize with her. Cribs are the rule for kids under 3, apparently.

Now I can appreciate the fact that the crib is supposed to be safe. So what does The Boy do as soon as he sees it? Tries to climb into the storage bin underneath, of course. And when I removed him, he hit his head. Not hard, but it wasn't fun for him. Crib safety indeed. Fortunately, the back rails on the crib come down in addition to the side rails. Additionally, the crib is now in front of the fridge, and when I need to get in there, I just scoot the thing over.

We sat on the bed, turned on Winnie The Pooh, and colored. He was very wet and I needed to change the fitted sheet. Usually when we need something, they are pretty quick (or I have another person in here so I can go get it myself). Of course this time it took awhile. In the meantime, The Boy decided that the bare mattress looked good and he wanted to take a bite. Great. You have an infection and now you want another one.

Then he decided he wanted to play with the high chair. Usually that means that he wants to eat, but dinner is late today. How perfect.

Holding him back from doing any of these activities causes him to throw fits. Once I got him calmed down, the nurse came in with the Neupogen and asked if I'd like to go ahead and give it to him. I did, no problem. "Like" is another story. He got over it quickly. We're sitting and watching Baby Songs and waiting for dinner.

As much as I love this boy, I think I'll be glad to go home for the night, making this the first time I've left hospital property since our arrival, even though I have to be back here REALLY early in the AM.

Impy Boy this afternoon

It feels good to see--after taking a very long nap (some of which was induced by the Benadryl that he was given before his platelet transfusion), The Boy had a nice lunch of chicken, rice, pretzels, and juice, and has been playing wonderfully since then. He also just had a snack--about half a container of yogurt. He is upset that I have tied the fridge shut.

Still no word on the final results of the first culture or the preliminary results of the second one.

Also, my last post about shots was post #300. That's a lot!


How come I give The Boy his Neupogen shot every day he needs it and he gets just little tiny freckle marks on his legs, but the past two days the nurses have given them and he has a bruise on each leg now? I'd think that they'd be better at it than me.

Cute, 24/7..and we're not going anywhere.

Last night, The Boy fell asleep at a reasonable hour and, mostly, stayed asleep until a reasonable hour in the morning. Except that at 2 AM the pediatrician on the floor woke us to ask about a newish bruise on The Boy, thinking that it was on his leg. Actually, it was on his forehead, in plain sight. They wanted to figure out whether to transfuse platelets today.

While the nurse and the doctor were still talking--maybe something in the inflection indicated that they were done--The Boy said "Bye!" a few times to them. Either he was just being polite, or he wanted them to get the heck out so he could sleep.

But then, when they left, he was trying to get down off the bed. I thought he was saying "bye" to me too, but he seemed to be saying "play" because that's what he wanted to do. Yeah, no. We're not playing at 2-something in the morning. I dozed through the Classical Baby music show and Winnie The Pooh. In the middle of Pooh, we were asleep.

I should also mention that after getting off the phone with Musical Daddy, even though The Boy was long asleep, I put on Winnie The Pooh just for myself. The relative silence was rather lonely.

Well. This morning's counts were 5 for platelets (yes, 5, where the normal is in the hundreds), 10.1 for hemoglobin (after yesterday's transfusion) and .4 white count. For those keeping track at home, the white count has gone down from yesterday's .5 and the .6 of the day before, and we want the white count to go up. More specifically, the doctors want the white count to go up before they'll let us leave.

This morning when he was eating breakfast, he threw up a little bit of mucus. Not actually a bad thing, because he doesn't really know how to spit it out. There was a bit of bile in there too but it was mostly mucus. After he calmed down a bit and had some juice, he was fine to eat about half of his omelet and some of the hash brown cake thing, with ketchup of course. They brought the wrong yogurt (I'm not giving him sugar-free), so once they brought the right stuff, he had about 1/3 of that too, and might have a bit more as we lie around here watching Dr. Horrible.

Also, with the infection, whatever it is, they want it to clear up before we go anywhere. Again, it's a good thing I don't have work to worry about, because I'd be a world-class basket case. Not that I'm so thrilled to be here, but I can take a more casual attitude about it. I still maintain that he is generally healthier at home, but in a case like this, where infection of some sort is a factor, I'd rather that he be monitored and given his IV meds. Some of the other hospitalizations, I've felt much more strongly that getting him out would be healthier for him...not so much this time. So we'll leave when we do, and that's about it...

Tuesday, April 21, 2009


They are redoing the blood culture. They do that anyway. But they think that there might some sort of contaminant in yesterday's sample. The nurse said that there are plenty of false positives.

The nurse also said that it could be negative because after one dose of Tylenol yesterday and one dose today as a premed for his transfusion, he has no fever at all. The nurse has no problem talking with us about this stuff and the "what ifs" and such. The pediatrician on the floor is generally in a hurry. The oncologist will absolutely talk with us for whatever we need as well.

Everyone--think negative!!!

Positive Culture

The Boy has some sort of staph infection. The blood culture was positive. Tomorrow they will find out exactly what kind of infection, and they'll be treating it with vancomycin in the meantime. That's one of the really strong antibiotics.

The scan today was decent. Some areas of concern in the lungs that they think are related to his coughing and cold; he will be rescanned in three weeks.

Scared? You bet. But he's my boy.


I know I shouldn't have any reason to worry but it always sets in, when The Boy has a scan, that something is wrong or something is growing. I'm sure it will only get worse once he's off treatment.

The Boy has had his cough for awhile, and the doctors were not previously concerned...but if there is something major going on, it would show up on the CT scan if it didn't show up on the chest X-ray, which it didn't.

The Boy fell asleep just now, while watching Winnie The Pooh. Grandpa is here and went downstairs to get us some lunch.

More fun today

The Boy's hemoglobin and platelets are pretty low today. I think he is getting blood today and platelets sometime later, maybe tomorrow.

I guess it's easier to do that stuff while you're already in the hospital and know that you're not getting out anytime soon. Same thing with the CT scan for that matter. We didn't need to wake up extra-early to leave the house for the scan--just came down from upstairs. He did not wake up right away, so he did need to go to recovery, as I mentioned. Then back up.

The Boy wasn't terrifically interested in breakfast, but he ate some eggs and yogurt, and Cheerios. Not bad. Back soon--more yogurt.


I admit that I am much less on edge about unexpected hospital stays when I am not worried about work.

That said, there are a few things that still bug me greatly about being here

The current gripe of mine is that it is 10:00, we have been back from The Boy's scan for an hour, and they have still not brought him any breakfast. They put him in the computer as NPO (nothing to eat or drink) and instead of taking him off of that as soon as he made it to the recovery room, and proceeding to fill his breakfast order so it would be waiting for him, I had to call the nurse when we got up to his room, tell her that he wanted breakfast, reorder his breakfast, and wait. He has had juice and a little jello in which his blood pressure medicine was mixed. And a chip. That's it.

I don't understand why they can't do dumb stuff like that faster. He's hungry. I am too, because it isn't as if we came with a whole bunch of stuff to eat.

They did not give us a crib this time, just a bed, and The Boy is sitting contentedly on the bed watching TV and playing. He has been a very good boy. Not as if we expected anything else from him, but grumpiness would be expected.

The Boy is having his

The Boy is having his scan right now. No fever since last night. No wireless either--this is coming from my phone.

Checked in

We are in our room. The same one he's had for chemo the past several times. And the same one he had for diagnosis. We got in at about midnight. Musical Daddy just left to go home.

We have a nice bed, and no crib taking up space. It is an ICU bed. I can actually lie on my back in it. Well, recline, anyway.

I should be tired, but I'm wide awake.

Monday, April 20, 2009

I'm so little, but I take up the whole bed...

The Boy is actually sleeping comfortably by himself in the little ER bed. He started to get upset, and we were going to switch places, but as soon as Musical Daddy got up out of bed, The Boy settled back down and went back to sleep. Not only that, but he just whined a bit, turned, and went back to sleep again, without either of us next to him.

I'm guessing it's a fluke, because he is so tired and feverish. His fever is down to 99.3 axillary after Tylenol, but that's still higher than it should be.

Still waiting to go upstairs. Grumble grumble. And I know it's the ER's fault. I can't really blame them, because they probably have bigger emergencies than moving a kid who is not in any hurry from one spot to another. We're just used to such VIP treatment for The Boy, and when we get something different from that, it's a bother.

The weather is supposed to be crappy tomorrow, as I may or may not have mentioned. So it's not like we had anything fun to do anyway. The weekend is supposed to be lovely. Hopefully his counts will be out of the toilet and he'll have his swingset. Even with marginal counts, he can still go outside and play on his swingset. Because it's his swingset. I'm excited.

w00t! Someone is coming. We'll be up in a few minutes, as soon as the nurse finishes taking another patient upstairs.

Sleeping boys

No room yet, but Musical Daddy and The Boy are asleep on the little ER bed while we wait. They are so sweet.


His fever is up to 101.9. He is miserable. Cranky. They did a chest x-ray because he still had his cough. No word yet on what that looked like.

He hasn't eaten since his snack in the afternoon. Hard to say if he's hungry or not. I gave him some juice, which he is pleased to be drinking.

Musical Daddy is here too, thankfully, but I'll be the one staying the night.

I haven't stayed the night in the hospital in awhile, because during chemo, I don't stay. And as I mentioned, we've been avoiding the extra hospital stays.

I sometimes forget when we're in the ER that they don't necessarily know The Boy or his quirks. I'm just now realizing that I probably should have asked for a bed...unless the people in our usual area of the hospital, where we'll be going, have remembered. It is likely, because we haven't had to ask for a bed in months.

He is refusing his Tylenol, which they have approved for him to try and bring the fever down. Sometimes he does that. Sometimes he'll take it happily. The things that he takes well pretty much all the time are his vitamins and Zofran. As I've mentioned several times, it is impossible to force him to take medicine. He'll throw up. I'm surprised that we even got as much in as we did--he was given almost 2 mL and there is about 1 mL left.

I really hate the attitude that we get from the nurses, and sometimes the doctors, about forcing him to take medicine. Not only do we not want to make medicine administration a traumatic, nightmare-inducing experience (he already has plenty of those), we don't want him throwing up any more than he may already. They make me feel like I'm a wimpy mother for not forcing him to take his medicine. I already give him his shots every day (except for today--I brought it with me and the nurse did it, so I wouldn't have to disturb him). He has gotten used to plenty of medical procedures that other kids go batty about, like his finger-stick for blood tests and getting his blood pressure taken. So if it were just a matter of him getting used to the medication, I'd suffer through some fits knowing that he'd eventually get over it.

The nurse is going to check and see if his room is ready. I'm betting we'll be in the hospital until Thursday or Friday.

Oh, and we're rescheduling the swingset installation. Probably a day or two after we get home from the hospital. It's supposed to rain tomorrow anyway.

You need to do a better job of dancing!!

We're in the ER with The Boy, who has a fever of 100.4 axillary. Five
months without an unplanned hospital visit really isn't bad, though.

Will update, of course.

Ew, germs!

The Boy had good hemoglobin, okay platelets, and white count in the toilet. So we'll not be out much over the next few days. And it's not a good time to visit, either.

He is still feeling fine, although the congestion from the cold isn't gone yet.

Everyone do the no-fever dance.

Saturday, April 18, 2009

How to Make Breastfeeding Difficult

Here's something I found in a discussion group. It would be funny if it weren't so darned true.

By the way, if you or someone you know is breastfeeding or is expecting to do so, make sure that you DON'T do any of these things, despite the fact that plenty of well-meaning people, even medical professionals, will tell you to do them.

How to Make Breastfeeding Difficult

Linda J. Smith, BSE, FACCE, IBCLC

1. Tell the mother to "feed on a 4-hour schedule" or "get the baby on a schedule." This results in a low milk supply and a hungry, frustrated baby and frustrated parents. Be sure to blame the crying on breastfeeding. If this doesn't work, warn her to limit the length of feeds, which will accomplish the same thing.

2. Be sure to "get the baby used to a bottle." This can result in a confused baby who refuses the breast. It's also a great way to lower the milk supply and undermine the mother's confidence.

3. Tell her she doesn't have enough milk if:

"The baby wants to nurse again after only 2-3 hours"...OR

"The baby will take 2 ounces of formula after nursing"...OR

"Your breasts aren't full and uncomfortable all the time"

Since milk supply insecurity is the primary cause of lactation failure, this will introduce an element of doubt and fear to the whole process.

4. Tell her she can't or shouldn't nurse if:

"She wants to eat chocolate (or Mexican food or cabbage, etc.)"...OR

"She smokes or wants to take medication"...OR

"She's going back to work/school in a few weeks"....OR

"She wants to go out in public...nursing requires privacy"...OR

"Her breasts are too small (or large)"...OR

"Her mother couldn't"...OR

"She's too nervous"...

Find as many reasons for NOT breastfeeding as you can, and look for ANY reason to interrupt it. Put as much distance between mother and baby as possible.

5. Insist that "Dad should give the baby a bottle or he'll feel left out." This is another good way to minimize the importance of breastfeeding.

6. Tell her it may hurt to breastfeed, and that sore, cracked nipples are normal. Pain is an excellent adverse stimulus. Don't teach her how to position the baby correctly. Do give her a nipple shield, give the baby lots of bottles to disrupt the proper suck, and tell her to rub her nipples with a rough towel to "condition" them. And be sure to tell her every "horror story" you've ever heard about breastfeeding, in graphic detail.

7. Tell her to give the baby formula, glucose water and cereal right from the beginning, to make the baby sleep. This is another good way to insure inadequate milk supply. Tell her that her milk might be too rich or too thin. Try and make her think that formula is the "safer" option, and that there is something wrong with her milk even if she's lucky enough to have enough of it .This will further shatter her confidence.

8. Separate her from her baby at birth, and show by your actions that water, formula, pacifiers, and scheduled feedings are the appropriate way to care for the baby. Since she is especially vulnerable at this time and will follow your example, be sure to tell her how little breastfeeding matters. This will help her distrust her instincts even more.

9. Don't teach her the normal course of infant behavior. Don't warn her about growth spurts and frequency days. Don't call or visit her, and be sure to abandon her in the critical first two weeks. Blame breastfeeding for anything you can think of, and make up reasons to stop breastfeeding if necessary.

10. Give her plenty of formula samples to take home to further weaken her confidence. Make sure the literature you give her has many references to formula, and doesn't tell her how to keep her milk supply up. Make sure she doesn't call a La Leche League Leader, Lactation Consultant, breastfeeding peer counselor, or anyone else knowledgeable about breastfeeding.

All these tactics, individually or collectively, will discourage breastfeeding.
© 1986 Linda J. Smith

Friday, April 17, 2009

Makes for a long day...

Blood transfusions tend to eat up most of the day. I was glad that when we arrived, the nurse-practitioner drew The Boy's blood pretty much right away. There are a few nurses, but one of them gets to do things like write orders for chemo and things like that. I like her. She's also expecting around the same time I am.

Anyhow, she drew the blood and, fortunately, one of the other nurses who ordered the blood forgot to allow time for premedications. Thus, the blood had to wait on him. But that's fine. Really, it was. They actually started the blood at 10:00. It runs for 2.5 hours or so, and then there is a flush. It didn't help that no one was there when the blood was done running. So we waited. Of course.

For the first half of the transfusion, The Boy slept--a Benadryl-induced nap. He awoke as the nurses brought me sandwiches. He ate all the turkey from one of the sandwiches but had no interest in the roll. He drank juice and ate jello.

It's tricky, chasing him around with the IV pole. Especially since it seemed like his line was rather short today. I was also by myself today, and unprepared, relatively speaking. I didn't bring any snacks or books. It was okay, because they always have snacks there and we ate just fine, but I still like to have something.

It is a relief that his ANC is decent, so hopefully we'll have a good weekend.

But, some good news:

The Boy's ANC is in the 3000's. Thank you, Neupogen. Made from E Coli
don'tcha know.

Blood today

The Boy needs blood today. Surprising, because he was so good
count-wise two days ago. So much for the nice day today... More later. We'll be here awhile.

Thursday, April 16, 2009


I panicked because I thought I had forgotten an appointment for our BathFitter repair, but then when I called, it was next week. So no harm done.

Anyhow, we woke up at 7 this morning. The Boy ate his entire breakfast of yogurt, shredded wheat, and an egg. He even asked for a bit more yogurt. We relaxed for a bit, I took a quick shower, and then we went to Trader Joe's. Following that, we stopped at Musical Daddy's school for kisses. That's fun to do. He gets so happy and comes right out, and of course The Boy says "dad-dy! dad-dy!"

Next stop was for sand. I tried Target, but they didn't have it. Home Depot did, which I knew, but Target was on the way and I had a gift card.

When we got home, I put the sand and The Boy in the wagon, rolled the sandbox and the wagon to the backyard, and put it in place. We'll be playing outside in the sandbox shortly.

Wednesday, April 15, 2009

Sneak attack

We forgot Neupogen this evening. When I returned from rehearsal, The
Boy was asleep, thank goodness. I prepped the shot and gave it to him.
He yipped for a half-second and went back to sleep.

I don't want to make a habit of giving him shots in his sleep, though.
It might give him nightmares. Or, likely, more nightmares than he
already has.

When you prepare for the worst...

Sometimes you get lucky and it doesn't happen!

Not that a hospital admission is the worst thing that could happen, but it still sucks. I didn't have a great feeling about how The Boy was doing, since he slept SO much yesterday and still has his cough, so just in case, I brought the red hospital bag and the playmat when we went for The Boy's count check. I also thought that for sure he'd need something, in terms of a transfusion, because he hadn't had anything in awhile and had also had chemo just a few days ago. Platelets were in the 200's, hemoglobin was 9.6, and his white count was 15-something (that's in the thousands, by the way). We waited for a rather long time to get the counts back, since there was a problem with the machine, and we still didn't have the differential which gives us the ANC, but with a high white count like that it couldn't be too low. Doctor also said that the cough is just a cough, and that since I had it too, it was possible that The Boy would get it again, which is why toddlers are always sick.

I reminded her that except for the cancer, The Boy is so rarely sick. Never had an ear infection and only a handful of colds. She thought that was pretty funny.

Anyhow, he probably won't need anything on Friday. Numbers will still be on the way down, but I doubt that he'll be REALLY low until next week. The only reason that his port was accessed at all today was because, just in case, I figured that they should have a type/cross on file, because it means that blood products arrive faster when ordered. The type/cross only is good for 3 days if someone has had a recent transfusion. So he has the port access still in, and if it comes loose, I can just remove it myself for him.

One of the oncology nurses said that perhaps after this ordeal is over, I might consider a career change. I am good at the handful of procedures that I have had to learn in dealing with The Boy. But a career change? Not bloody likely. Although one of my mommy buddies from the WebMD boards became a NICU nurse after having had two preemies. I became an elementary/ intermediate music teacher because I hated elementary school and love music.

Now, in the middle of this post, Musical Daddy and The Boy have gone out for a walk to the comic book store. I was considering going with them, but frankly, I could use a few minutes of peace, followed by a few minutes to do a little straightening.

I discovered, by the way, a pretty good tactic for buying me 10-15 minutes of time for kitchen/living room chores: sit The Boy at the table with a rice cake and honey, and some juice to drink. Most of the time, we do eat together, but if I need some time to get that stuff done, it works well. And he REALLY needs to be at the table for that snack, or I get honey all over the floor. He is the perpetrator, but I am responsible for the mess...

Working I mentioned, yesterday The Boy was very sleepy. He fell asleep very briefly at the end of OT but, unfortunately, Musical Daddy was unable to transfer him successfully into bed for a joint nap. He fell asleep again at 6:45, on my lap, and I used the time to relax. In retrospect, I should not have allowed him to sleep as long as he did, because once I tried to move him, he was up. And it was relatively late. By the time we were all REALLY ready for bed, it worked out fine, and he woke up around his normal time.

A slight digression: I learned today that another one of The Boy's cancer buddies (isn't that fun) also stays in bed with his mommy. One buddy is also in bed with both parents, and I think he has been even before his diagnosis. So we're not alone...

Anyhow, I do look forward to a pretty decent remainder of the week, and a pretty decent weekend as well. Barring any unforeseen complications. Sometime in the middle of next week is when we'll have to be the most careful. It is also when The Boy gets his swingset!!!!!! w0000t!

Tuesday, April 14, 2009

Rip Van Boy

He is SOOO sleepy!! He slept a little past 7AM. We had breakfast. He had a few bites of cereal and his entire egg with ketchup. I'm sure he would have eaten more egg if given to him, but I am probably going to give him another one later in the day, and three eggs in a day is too many, I think. He drank plenty of juice too. After our shower, we snuggled and watched Winnie The Pooh. Then he started his perusal of the kitchen. He had a fruit bar (I'm glad he likes those again) and soon after, he ended up on my lap, asleep, where he has been for the past hour or so. Much earlier than normal for a morning nap.

He doesn't seem too "unhealthy." Not feverish. He doesn't seem pale. He is a bit more cranky than he would otherwise be. I think it's still the chemo in there. Zofran twice a day, for sure. Zofran also causes drowsiness, I've heard, although it doesn't usually affect him much.

It's fine--he is sleeping and I am resting my pregnant self on this chair, with my feet up, which is probably pretty good for me anyway.

I keep meaning to get a good look inside his mouth to see if it's those blasted molars finally coming in. He also could be growing again.

Monday, April 13, 2009


The Boy fell asleep in the middle of physical therapy, despite having had a nice morning nap. He didn't do much, and part of the session was just him sitting on my lap and the therapist massaging his feet, shaking his knees, and other such things, designed to remind him that they are there.

Of course, they are there, and he uses his feet and legs quite well.

He will be evaluated again in August, just by his current therapists and probably the care coordinator. He may not need further services, as it seems like he is on track for now, but then he may also experience a stall in his development...who knows? The initial concern, which was the walking, is pretty good now. The PT said that he may walk with a wider stance for a bit longer (at his age, a wide walking stance is typical), but since he has been improving so much, he'll likely correct himself in a reasonable amount of time even if it is slightly later than a typical child.

I need to get some dark meat chicken for The Boy. Probably some veggies for mushroom quinoa too. Quinoa is Kosher for Passover.

And so it begins, again...

The return to normal life, where most of the time, it's just me and The Boy.

Two days of holiday, followed by three days of chemo, during which I had a lot of singing to do and was barely even around.

Last night's diaper proceedings really weren't that bad. Fortunately, there was no more of that poo in the middle of the night. I dozed on the chair until midnight, at which point I got up and changed The Boy. He didn't wake up much, just yipped and snuggled in with Daddy. At 4 AM I woke again, after having moved into the bed and having covered up with extra pads. Which, by the way, were VERY warm. Same thing--just snuggled in with Daddy after the change.

He actually slept past 7:15 this morning, allowing me to take my shower. He had an egg and a few spoons of yogurt for breakfast. He changed his mind about matzah, I think. At 8:15 I drank my orange drink for the glucose test, and we left the house at 8:30.

Musical Daddy was kind enough to offer to take The Boy at school while I went to my appointment. Most of the time was during a prep period anyway, so it wasn't too difficult. I gained 7 pounds since my last appointment. I also look a lot more pregnant.

Now we're home and hopefully will catch a nap before physical therapy. And maybe I can clean a bit--the house is a MESS!

Sunday, April 12, 2009

Night Sounds

Earlier I posted something that was just a title. It wasn't exactly a mistake--my iPod's BlogWriter app doesn't actually work, and for some reason I also can't seem to get the keyboard to pop up in the text body box, only in the title. Big pain. Musical Daddy was on the laptop, and all I wanted to do was post that we were home.

No major medical excitement. The Boy has loose poo this evening. I'm not sure if I'm so concerned about it, though, only because it didn't seem like really foul, toxic stuff...just loose. Yes, when you become a parent, you become an expert at bowel movement analysis. He wasn't all that hungry today and ate mostly grapes, raisins, and drank juice. At dinner time, he ate several handfuls of cheddar cheese. No starches to speak of. He liked matzah for a day or two, and now I think he is over it. So we'll have to find him some other starch. For breakfast, I think I'll break Passover (but only for him, because he is a baby with a medical issue) and give him Cream of Rice. When we go up for my OB appointment, we'll stop at the store and see if they have the Passover mac and cheese. If not, I'll buy Passover pasta and make my own mac and cheese for him. I'll also be sure to have dark meat chicken for him. If they have any dark meat turkey, that would be even better.

Tomorrow should be interesting. Because I'll be exhausted. I'm trying to stay up an extra half an hour so that I can do the next diaper change. I set an alarm just in case, though.


Chemo 6, Day 3--counting the hours

We hope.

Of course, there is no reason to expect that we should be held back but as usual, we don't want to say that it's certain because of course, it's not.

The Boy gets his last chemo med at 5:00, which lasts an hour, followed by about 15 minutes of fluid flush and then we go home. Everything has, once again, gone relatively smoothly. The only issue right now is that he's not so hungry. According to my mother, he has eaten grapes, and that's about it. A bite of this, a bit of that...and bunches of grapes.

He is looking a bit pale. His next appointment at the center is on Wednesday, and I have every reason to believe that he'll need a transfusion, possibly of both blood and platelets. He had "only" one of each during the last cycle.

We are watching "BabySongs" and the song, "So Big," has parts in it that say "yes yes yes" and "no no no" which The Boy enjoys saying as well. I'll be interested to see when he will start to sing.

Speaking of singing, I got through the Easter weekend, despite my horrible cold, being able to sing all of the music that I was expected to sing. The only unfortunate part of it was that I was up there with the tissues and blowing my nose every five minutes. But for some reason, my voice was functioning quite well. Even the high notes that I normally can't sing due to lack of practice and the fact that my range has dropped with age...and lack of practice.

I am, of course, not looking forward to the fun that will be the diaper changing proceedings this evening. But we'll get through it, as we tend to do.

I also have my glucose tolerance test, for gestational diabetes, tomorrow. I did fine last time, when pregnant with The Boy, even though I gained quite a bit of weight at that appointment. I had just been at my cousin's wedding, which was an entire weekend of amazing food and celebration. Despite all that, I passed the GTT. I have not been feeling any differently with this pregnancy, although all of this stuff with The Boy has been understandably exhausting. I do hope that I pass the GTT. If I don't, I'll just go on the diet rather than subject myself to the 3 hour test.

28 weeks and 1 day pregnant today. Of course, I want Baby Bear to stay in there for as long as he should, but it feels a bit better knowing that if for some reason he were to come out today or soon, he'd be in okay shape. Not that I have any desire to deal with NICU baby and cancer baby. Heaven forbid.

Saturday, April 11, 2009

Chemo 6, Day 2

The Boy had a bit of a fever yesterday evening, which was cause for concern, but when I learned that his temperature was taken while he was playing around and tearing up the place, and eating nonstop, it bothered me less. It went down a bit later on and was back within normal range by the morning.

I stopped by on my way to rehearsal, just to check in with him. He's too cute. When I returned after rehearsal, I joined him for a somewhat fitful and uncomfortable nap. He was neither fitful nor uncomfortable--that was pregnant me trying to share a bed with the baby, while sleeping on the wrong side, and having a cold. So I did sleep and I think I'm better off for it, but nonetheless.

"Are you a TV? Are you a grape?" It was funny when Musical Daddy came in just now and The Boy was too busy.

His temperature was 97.0 axillary as he slept, so he is, at least for now, off the hook in terms of having any sort of fever. His first chemo began at 1:30, so it will finish at 7:30. He will have his second chemo, the one with the blood pressure monitoring, when he might actually still be awake.

Right now, he is raiding the fridge. He knows how to open it up, and he stands in front of it like a teenager.

Friday, April 10, 2009

Passover Oddity

Why in the world would anyone eat an apple-nut-wine sweet mixture with horseradish? It sounds pretty disgusting. Not normal at all. Yet at Passover it is supposed to be done. Furthermore, it is quite tasty.

Sounds like a pregnancy craving. And I never even thought about how strange it is until now.

Also, The Boy was playing with his little paint set. These are the TaDoodles by Crayola, which I don't like because they don't encourage proper grip and are annoying and messy. Of course, he got paint on various parts of his body. Musical Daddy pointed out that the paint is much less toxic than the chemo.


On Holiday, and Chemo #6

I meant to post a new entry at some point during the week, as it's been a pretty busy week, but I just didn't. I was in Harrisburg for the past two days, with The Boy and with my family, and I figured I could stay mostly disconnected for those few days without the entire world collapsing.

So. Tuesday (which seems like a long time ago) was a perfectly fine day. I got my car detailed on the inside, which was prompted by the fact that I left my sunroof open, but also motivated by Passover and the quest to eliminate leavened bread from my life for the next week. Considering how clean the car is vs. how dirty it was...worth every penny. I did some shopping, and we had a friend visit. He lives in Michigan but was on the east coast for his sister's wedding; he figured he may as well stop and see a few friends and a few sights while he was in the area. The Boy seemed to like him well enough. They played with Play-Doh together.

Musical Daddy had rehearsal on Tuesday night, but our friend went to the diner with me and The Boy. He commented that in terms of handling the whole parenting thing, including a little guy who likes to climb on stuff and touch everything, I really don't seem to be all that stressed out. My response was that when your kid has cancer, a lot of the little stuff doesn't really seem to matter, and then your child senses that you are more relaxed and spends less time getting on your nerves. More on that topic later in the post.

The Boy and I were delayed in leaving for Harrisburg on Wednesday morning. The usual thing where one event delay leads to another. I was in a rush and figured I'd let him eat in the car. But then I figured out that I was missing some iPod-related cords and really couldn't function without them, and since I'd be passing our highway exit anyway...may as well stop home. About a block from home, he threw up. So it was a good thing we were almost home anyway. And an even better thing that I had this carseat cover because cleanup was just a matter of taking a few wipes to the area. It wasn't a lot but it seemed as though he had eaten in a hurry, and that was a factor combined with his having a cold and cough.

The trip to Harrisburg is under 3 hours, and I often make it without stopping, but I figured that The Boy could probably use a break in the middle. I stopped at a Burger King which did not have a changing table in the bathroom, so we did the standing diaper change. Fortunately, he was very cooperative.

We arrived at the hotel in the late afternoon, shortly after my family had arrived and checked in, so we didn't have to wait. We were met at the door by my mother, who was, of course, thrilled to see The Boy. She loves her grandson SO much.

Hotels are generally not that much fun for toddlers. There is some level of excitement at exploring a new place, but it gets old pretty quickly. It didn't take long for The Boy to discover that he was able to open the door and exit the room. Fun for us. He also didn't take long to learn how to open the fridge. With it being Passover, we had to bring our food with us for the times when we weren't at my aunt's house. I shopped for much of the food, because the prices here are a lot better than those in Pittsburgh.

The seder was held at my aunt's house. Both sedarim, actually. They live in a large Tudor with lots of fun places to explore, sets of stairs to ascend and descend, and an impressive playroom and toy collection (even though the youngest child is 22 years old). My aunt is also rather enamored with The Boy; she was prepared with several items with which to amuse him. She has a briefcase full of little superhero figurines (a good toy selection for the child who is past putting everything in his mouth and loves to take things out of bags and boxes). Musical Daddy may be given the task of sorting them, as he likely will recognize many of the characters.

Anyhow, there was no expectation that The Boy would stay at the table the whole time, nor wait for his meal. The seder doesn't begin until 8, and the meal isn't served until 10, which is pretty unreasonable if you're 1.5 years old. Fortunately, he was able to find the kitchen. Grandma was excellent at following him, wherever he chose to go (not that she really sits still so well anyhow), and I was sure to bring him back to the table for certain highlights, like The Four Questions and the frog song. He certainly ate his fill both nights--turkey the first night, brisket the second night, with apples and grapes and juice to go with it. He also enjoyed the songs and seemed at least to react favorably to The Four Questions, which I had been playing for him and singing for him frequently, in preparation.

It does feel a little bit isolating, to be the only one with a very small child at such an event, but it was nice that my mother and sister and other relatives were willing to amuse him and chase him around. Snaps to my uncle for taking The Boy out for a walk yesterday, where he actually napped for quite awhile after fighting off sleep for hours, giving me a chance to relax. I can remember when we were kids, we would sometimes stray from the table to play. My mother had the first two children in the family (actually, two and three, but the first was my cousin who lives in Israel and wasn't in attendance at these events), so I'm sure that she had her hands full with us, especially since once I was old enough for conflict, my brother and I would fight constantly.

All told, it was a wonderful visit, and I'm so glad that we went. Fortunately, the holiday landed on a time that was good for The Boy in terms of his counts and how he would be feeling.

Straight from Harrisburg to the hospital this morning, to begin chemo #6. Of 30. We'll be 20% finished after this...every one of these stays brings us closer to the end of the treatment and hopefully our trip to Disneyworld. Although we arrived before 9:30, it took awhile to check in with admitting. At least the room was ready on time, but the chemo didn't start until 3:00. I'm not excited about that, because he is getting Carboplatin today which runs 6 hours. Followed by Etoposide, which requires that his blood pressure be taken every 15 minutes. So that will happen probably at 10:00, because The Boy will be due for a dose of Zofran in between the two chemo meds. Very annoying. But hopefully they can shift it back a bit for tomorrow, and even if not, it isn't so important, provided that they are willing to shift the third dose of Etoposide back on Sunday.

The 3-day chemo stays are generally easier and also do not require the same additional medication as the 5-day stays. As I found out, my mother had only two chemo medications during her treatment, but because she had one that was related to Cyclophosphamide, called Ifosphamide, she also needed the extra little doses of Mesna, which is the bladder and kidney protectant that The Boy gets. She had that one and Doxorubicin/Adriamycin. That's the one that turns your pee red.

I am a bit concerned because The Boy still has his cold. I am also not thrilled that I have it and Musical Daddy feels like he might be getting it too. Likely, since Grandma is staying with him, she'll get it as well. Of course, Grandma never whines. She doesn't complain and she doesn't get upset. She'll stay up late with The Boy or amuse him in the middle of the night. She hops in the car for visits...and of course, she is here every three weeks. Not to say that she never complains about anything, but she is remarkable and self-sacrificing because she loves The Boy and she loves us too.

Hopefully, I can get through this weekend. We both are singing for Easter and my voice is in questionable condition due to this cold. Of course, I can't take much for it. AirBorne, which normally saves my behind when I feel like I am getting sick, is off-limits for pregnant women.

One of The Boy's oncologists is pregnant with her second child, about 6 or 7 weeks behind me. Additionally, one of the nurses at the treatment center is expecting her second about a week after I am, but since hers will be a scheduled C-section, she'll possibly be in at the same time that I am. There must be something about the center--be careful when you drink the water there.

Anyhow, Boy needs Mom. Later.

Monday, April 6, 2009

Living on the edge...

Even though Thursday's white counts weren't great (as I learned later, his ANC was in the 600's), we still had a busy weekend, complete with [paranoid handwiping] socializing. And it seems as though we came through relatively unscathed.

My sister and her boyfriend came for the weekend. That was fun. I would have liked to do some gaming with them. Maybe next time.

Also this weekend, some friends came down to visit, and we had a large gathering at TGIFriday's on Saturday night. 14 people total. A baby, a toddler, three kids, a teenager, and eight grown-ups. I don't especially like Friday's, but it was the easiest place to go with such a crowd. We were debating as to whether to bring The Boy and decided that if we were careful, he'd be fine.

Following dinner, we had the baby and his parents over. It was already 8:30 when they arrived, and both little guys were awake much later than either set of parents were expecting. The younger boy ended up being very interested in The Boy's toys. Toy cleaning immediately following. Nothing personal, but it was a good idea.

A bit about this other little guy: he is very friendly and outgoing, very expressive, and a lot of fun. He is 10.5 months old and is just starting to take his first steps. Watching him made us do a lot of what-iffing. This was what The Boy was supposed to be like at 10.5 months. Granted, he crawled later than this other little boy, so he probably would not have walked until closer to 1 year, but we realized exactly how reserved The Boy really is. He is still sweet and affectionate, but it usually takes him awhile to warm up to people. He is active and rowdy, but probably less than he otherwise would be, considering that he usually goes around with pretty low hemoglobin levels, translating to less energy. Some of the differences in the two boys are also attributable to the little one having been in daycare and The Boy always being cared for on his own (first Daddy, then Ms. R, then me). But I guess it's just extra sensitivity because this boy was around the age that The Boy was at diagnosis, which is when things went haywire.

Big plans for this week: we are going to Harrisburg for Passover! Just The Boy and me, with my family. Musical Daddy has a procedure in the morning on Wednesday and will be doing the Thursday service for Easter. I was hired to do the Easter gig but I said that I'd be unavailable that Thursday. Not a big deal--the more important stuff that I need to do is the Monday and Friday services, because in those I am one of six singers.

We will be returning mighty early on Friday morning so that we can get The Boy in for chemo. Another count check Wednesday before we leave, of course, but it should be fine.

The Boy still has hair on his head. Just fuzz, really, but the color is a medium brown. I wonder how much longer it will last. He didn't lose his hair until much later on with the last treatment, so maybe the time that he had to regrow it will allow him to keep it longer. Of course that makes putting stickers on his head a lot less fun.

Friday, April 3, 2009

The valley

Today is day ten post chemo, where his white count (and possibly other counts) are the lowest. Thus, we stayed in today.

He gets his Neupogen shots to help those white cells rebound, but he still drops low especially after Cytoxan chemo. I forget that with the three day treatment he is usually back up by the second weekend, but with the five day, he is not.

Today I did a lot of housework. I am exhausted. The fun part was organizing the shelves in the kitchen. Every time The Boy saw food he liked, he insisted on having some. Cereals, raisins, bars, chips...some just to taste and see if he liked them. And avocado. Lots of it. I think he ate almost an entire one today. Awesome--lots of good fat and calories.

On the Bactrim--no luck. He took maybe half a dose when I alternated it with Zofran. Almost none this evening. Problem: it seems to cause him to cough. The cough started in the morning and went away after about two hours. Then it came back after the next attempt. IV meds it is. Musical Daddy said it's just not worth it to keep trying with the liquid. We have enough stress with Neupogen.

So hopefully we will have a good, if careful, weekend.

Good news and bad in the count department

Good news: The Boy needed neither blood nor platelets at his appointment. Means that we didn't stay for too long and didn't need to return the next day. Bad news: whites were down, so he still needs his neupogen shots. They weren't so low that we need to keep him in the house and away from all people, but until they start coming up, he still gets his shots. Probably until Monday's count check.

Win some, lose some.

Wednesday, April 1, 2009

Preggo Brain

Went food shopping with The Boy, stopped by Daddy's school since the timing was good and he came out to give kisses. Then he asked if I was able to find something at the store, which I wasn't, so I went to Big Lots where I knew it was, since The Boy was in a good mood. Fun trip, got several good things. Got home, went to unload the car...and realized that all my Big Lots stuff was still in the cart!!

I went back to the store and, fortunately, the stuff was still in the cart. I explained to a lady in the parking lot what happened and she said "Girl you're lucky it's still here!"

With my mental state, I said "I'm lucky that I left the stuff and remembered the baby!"