Saturday, May 30, 2009

Are you stressed?

The Boy's blood pressure started climbing up again around lunchtime today. Even though he took his medicines as he was supposed to, he still had high readings and needed a dose of rescue medicine. He will be getting 6 mL of Hydralazine instead of 5 mL when he gets it. I am speculating that they don't want to add any more ACE or ARB meds because the potassium is still a concern.

He did get the blood yesterday, and usually right after he gets blood, his BP reading is high. Obviously, because he is getting all this extra stuff pumped into his body. Thinking about it, I don't know if it stays high for a day after a transfusion, because we haven't been doing BP at home for that long that we'd know if BP was staying high for that long after a transfusion, but his numbers were fine overnight and in the morning, Grandma reports.

One of the oncologists was also in this afternoon. He is the head of the group and so very nice. He marveled at The Boy eating an apple like a grownup. Grandma said something about hoping that The Boy will get to grow up, because that's been on our minds these days. He said that he feels it, that The Boy will in fact be growing up. That's good to hear, because his feelings are colored by his professional experience. It doesn't so much mean that based on The Boy's current medical status that he is giving us a definite answer about long-term health, but I think that since he has dealt with many many many children with cancer and other related health problems, he probably has seen enough of them go through what The Boy is going through and has seen them come out on the other side.

Laundry is in progress right now. Had my mother not brought me a new pair of shorts and two shirts, I would not have had an acceptable outfit to wear today.

Today was Musical Daddy's brother's birthday. He was given a surprise party with just family present, at their father's house. And before he knew about it, he was MAD, because he thought that everyone had forgotten his birthday and that his father was just getting on his case and didn't have any time for him on his birthday and blah blah...he was grumping and ticked off and whatever else, making the excitement of being surprised by his family with an amazing steak dinner and cake and presents that much more rewarding.

Would have been lots of fun to have The Boy there. And he would have been excited about the steak for dinner. Filet mignon, to be precise. We did bring him some, but Grandma mentioned that he had thrown up a bit this afternoon, so steak wasn't a good idea.

I'm worried, a bit, about him. He doesn't throw up too frequently. Even as a chemo patient. Sometimes he gets something that goes down the wrong way when he is eating and a bit comes up. Sometimes he feels a little queasy from chemo. Usually during and after chemo he gets Zofran, which, hopefully, is doing its job. I try to wean him off of it as soon as it doesn't seem he'll need it.

Also, the blood pressure was under control for...well...a week. Not exactly a ringing endorsement but still means that there is a possibility that something else is going on.

Let's hope that it's not too much.

Found Money

My parents had a fire in their house last fall, and they are finally almost finished putting everything back together again. The fire was confined to the downstairs--the kitchen and the family room mostly--but smoke filled the house so everything had to be taken out so that things could be cleaned.

The upstairs "sunroom" was a holding cell for all sorts of assorted junk. Old documents, pictures, books, and generalized nonsense. And one of the things that my mother found were four savings bonds of mine, $50 each. I was excited to be getting an extra $200. Then I went to calculate the values online and they are actually worth a total of over $400.

This extra money was brought to us by the Department of Disorganization and Inefficiency. Thanks!

Friday, May 29, 2009

What's going on

Likely, chemo will be starting on Monday. They still don't know exactly what the infection is. The oncologist is hoping that the infection can be treated with a different medicine than Vancomycin, because it would be better for the kidney.

Ah, yes...the kidney.

I also learned something very important today. I don't know why I didn't get this before. Basically, this infection and the last one seem to be from the bacteria living on The Boy's body. We all have it. But it can get in through his port. Or through his mouth. Or whatever. And with low immunity, he can't fight it off well enough. Possibly, those times when he has had fevers for an hour that went away were these infections that didn't stick around long enough to be treated. Every time he has been is from himself. We have done a great job of keeping him from other's infections. But if something is just on him, then that's the breaks.

I truly hope that this is just an unlucky streak and that our lives are not going to be like this all the time.

The Boy took his medicine again for the nurse. She had him sitting up and was holding him under the chin. She gave him something to do, pushing buttons on her calculator. And she gave 1 mL at a time, leaving the syringe in his mouth, telling him to swallow and waiting as long as necessary. She was very stern with him but not mean, and she got it to work.

The Boy is also getting blood again. Some of this is due to IV fluids diluting everything. Mostly, it is his body using up resources to fight infection. So we are waiting on that.

So that's about that.

More good news:

Grandma is taking an earlier flight and should be here by 2. w00t!!

Thus far, a better day

The Boy was lounging around when I arrived to send Musical Daddy off to work. He was just fine. Good night and good morning, and we are content.

Except that Elmo is taking a break and The Boy isn't too happy...but then he got over it when he found my keys.

On medicine: the nephrologist would like to see him taking Cozaar and less Hydralazine. Cozaar will also help with the protein in the urine. I talked with her this morning and expressed my frustration. She does have kids, by the way, and she said that her kid gave her trouble with meds too (although he is not chronically ill). We tried Hydralazine as a crushed pill. Fail. It is a bit bigger and, more to the point, it is bright orange. You can't really hide this stuff. Mix in his yogurt, and spit. So the nurse gave him the liquid a little while after breakfast. It was a somewhat involved process, and I actually left the room. She apologized to me, saying that she had to be a taskmaster about it and that isn't even her style. And she'd hate if someone had to do that to her kids. Her son is the same age as The Boy, like within weeks, so she knows the age. I told her that it makes me sad but that he has to take the meds, and now that we have a jumping-off point, we can work with it. I prefer a relatively quick delivery when unpleasantness is involved, as do most people. Cuts down on the therapy bills.

He was about to fall asleep when he had to take his medicine and, unfortunately, has still not visited dreamland almost two hours later.

He is thinking about it. Unfortunately lunch is in half an hour. Timing...

Thursday, May 28, 2009

More meds

He had a high BP this evening, right after fighting me about his meds. Later, it was okay. Still, now he is back on Cozaar, but they didn't say so until 9. The medicine still isn't here. Of course, I had brought it yesterday but didn't leave it here. My fault. I was trying to keep him awake. He is sleepily whining at "Goodnight Moon" because it isn't Elmo.

I am annoyed. I hope that the confidentiality in the hospital includes the things that parents say to nurses about doctors. Not that it was do bad, what I said. I just asked if the nephrologist had any kids. Implying that she didn't seem to know anything about them.

Crankiness quotient

At least three times a day, The Boy gets Benadryl before getting Vancomycin. It makes him either tired or cranky, and he is more prone to fit-throwing and general contrary behavior. One of these is overnight, so it isn't an issue. Then he gets his Hydralazine three times a day, but this one is just spaced out during waking hours. He is obnoxious when being given this medication and I waste as much as I give because he spits it out, as I described. He is really good at spitting out medicine.

Between that and the time he spends sleeping, it doesn't leave much time where he is even remotely himself. That's one of the sadder aspects of this current ordeal, because so much of what gets us through his treatment is his sweet nature and good behavior. He doesn't get to act like himself much under these circumstances. It also tries my patience and I get upset.

Both last week and this week I have needed to call on Musical Daddy to rescue me and help me resolve a major issue with The Boy. I have a feeling that his acting not like himself will end up being normal for him and the sweet boy that we know will be just a fleeting fantasy if things continue as they have been. I hope I am wrong.

I know--get over it, the "Terrible Twos" are coming. Well, no. It isn't "Terrible Twos." It is a product of being dehumanized by constant medical involvement. Don't worry, I won't do like that mother in Minnesota who isn't having her kid treated for lymphoma. I can get behind her seeking alternative treatment but it didn't work...anyhow, not on that right now. Point is, the treatment and frequent medication is what is causing his behavior to change, and it upsets me.

I don't want to spend my energy getting upset with someone who doesn't know enough to care. I have been amazingly patient and compassionate, and I love him so much. I want to do what is best for him.

And, selfishly, I want to do all I can for him and see him live long and be that I don't feel like we went through all this only to lose him anyway.

Yes, it has come up in more than one conversation.


The Boy just got a dose of Vancomycin, his first one this visit. Now his face is a bit swollen and blotchy.

He is getting Benadryl. Then, before he gets vancomycin again, he will get more Benadryl. Goody. So every 8 hours he will get a drug that puts him to sleep. But not always when we'd like it.

All this instead of just not giving him that medicine.

I can't imagine that this is so good for his kidney either.

Temp is back up to 99.2 axillary. Do allergic reactions cause fever?

For the record...

The second culture was drawn after he had NO Vancomycin and after three doses of Cefepime.

It is almost 10:30 AM on Thursday.

Here we go again....

Another positive culture. Clusters of...something. Probably staph again, they said. They are starting him on Vancomycin. Again. They will redraw the culture again and probably ignore the second results. Again. So he can get C diff. Again.

No chemo until this is resolved. Not sure if that means no chemo until he finishes the antibiotics or just until he gets a negative culture.

He seems fine now, and his temp isn't too high either. Once again, the Tylenol he got and two or three doses of Cefepime shouldn't have fixed such a serious infection so quickly, but once again, it is time for overkill.

And I wonder if this time we will be out of the hospital before I have Baby Bear. Seriously.


Sesame Street did the song "There is nothing like potato" which is a direct spoof on South Pacific. You know, the musical.

They happened to mention that potatoes are naturally high in potassium. Thanks for the tip.

The Boy is awake and content. BP and temp were both good overnight. He feels pretty decent right now, although he looks a bit puffy. Hopefully that will fix itself.

One of his blood chemistry issues is too much acidity, so his fluids have bicarbonate added. Anyone know what causes extra acidity on the body? I don't, which is why I am asking.

Wednesday, May 27, 2009

Bug me

We had to wake The Boy for Tylenol and Hydralazine. I am glad that I waited to give Hydralazine, because I only needed to wake him once. Yep, he is sleeping. Fortunately, he didn't fight too much about it.

His temp is 100.9 axillary, and his breathing is faster than normal.

All the nurses are excited that Grandma is coming on Friday. They love her to bits. And it certainly has helped me to get along better with everyone, to know that Grandma, who is somewhat removed from the situation, is able to come and spread fairy dust.

In for the night

The Boy is resting; we are watching The Poetry Show. His fever is still present but down, and he hadn't had Tylenol in awhile.

Likely, there will be no chemo tomorrow. If he wakes up with no fever and there is no infection, he may still start in the afternoon, bit we are hoping for Friday at this point.

Usually, evenings in the hospital are uneventful and relatively relaxing. Sometimes he gets his second wind and wants to play with his toys again, which is fine. But is is quiet. And, at least in this part of the hospital, sleep isn't that hard to come by. At least not if you are used to the drill.

Gives him fever

The fever is definitely back and something is definitely wrong. Doubt that chemo will start tomorrow. Maybe Friday.

Could just be from blood. Could be an infection. Could also come back with another contaminated culture and more infections, and another few weeks here. Who knows.

Don't bug me...

The Boy is sleeping, and no one here on the floor is interested in bothering him while he is asleep. This is smart. Also, since he isn't going anywhere and no one is in any hurry, it doesn't make much sense to disturb him.

He hasn't eaten a whole lot. Also, even though they did take a lunch order for him, it never made it upstairs.

More later--going to ask a question about an issue.

In the ER again

The Boy had a ridiculously high fever and was indicating that he had pain around his port. Crap.

Last night, he complained about his port too (we left him accessed because chemo is supposed to happen tomorrow) and I noticed that one of the little butterflies was sideways and digging into his skin. I removed the dressing, cleaned the area, and replaced it, knowing that we were stopping at the center tomorrow anyway to drop off a urine sample.

Maybe I should have taken out the needle right away.

So now we're in the ER. I dislike it here because they just aren't that bright and they ask the same stupid questions all the time. I pressed the call button, which I don't think does anything, to get a cup and syringe for The Boy's medicine. Someone came to close our door, not knowing that I had pressed the button. She looked about 15 but she had a stethoscope.

This sucks. And I am hungry.

Tuesday, May 26, 2009

No cheating!

The Boy is now on a strict low sodium and low potassium diet. This isn't a major stretch for us, or for him, but it definitely requires some adjustments. Complicating this issue is the fact that many foods do not have potassium quantities listed, so I just have to look it up.

Tonight's dinner was steak, macaroni, and green beans. I know that all meats have higher potassium levels, but I am not willing to take him off of meat, especially since he usually only eats it once a day. The macaroni was plain, which The Boy loves. It was the Ronzoni SmartTaste which has added fiber and calcium. The green beans were not a success with The Boy. I ate them all instead. The tricky part was the steak without ketchup. He asked for it several times and wasn't happy when I told him no, but I wasn't eating it either, so he got over it.

Eggs will also be tricky without ketchup. However, he has eaten them without ketchup before and will learn to do it again.

Although the diet orders come from nephrology, it was the oncologist who said that we shouldn't really cheat. We are in a favorable position with The Boy, in that he is young and already eats pretty well, so we can really get him accustomed to eating this way for awhile.

Musical Daddy said that we should probably make it a point to keep the food in the house within the constraints of what The Boy can eat. I don't have a problem with that. Of course, there are exceptions, because there are plenty of things that we have in the house that The Boy has no interest in eating in the first place.

What I'd like to know, and what I'll probably figure out during his hospital visit by talking to the right people, is, what should be his limit for sodium intake on a given day? A 1/4 cup serving of shredded cheese has 180mg or so of sodium. That sounds like a moderate amount, but if he is only supposed to have 300 or 400 mg a day, it's far too much. Obviously, prepackaged things like rice pilaf and macaroni and cheese are out of the question, although half a serving of shredded cheese over plain macaroni is probably okay.

And then, of course, I'd like to know the same for potassium.

The two biggest dietary issues are going to be getting rid of ketchup, which is high in potassium and moderate in sodium (although I could get the salt-free stuff); and dining out. Secondary issues are going to revolve around convincing people that we are serious about keeping The Boy on his regimen and that there is no cheating, and we have to be mean parents about it, and no fun. It is a lot easier for a child to stick to something like this when other people are supportive, and it becomes a hassle when other people try to make the parents out to be the bad guys.

As someone who was on a restricted diet for many years as a kid, I can tell you that I felt like a freak for it and did whatever I could not to stick to it. It was an allergen-reduced diet and I didn't think I had allergies. Now, I really don't have allergies. I am also noticing a lot more awareness about allergies and special diets and such than there ever was when I was growing up. Many parents resent it, when their kid doesn't have allergies, that they have to be sensitive to other kids that do.

My thoughts on that? Tough tushie. Aren't you lucky that your kid doesn't have problems.

When I am having people over, I am sensitive to what their needs are. It doesn't mean that every single item on the menu falls in line with what that person requires, but it does mean that there is enough there for that person to feel like s/he can eat and enjoy. I'm thinking about vegetarians and people with allergies, in particular. However, I can't expect everyone to know what my kid's dietary needs are all the time, if I don't tell them, so I anticipate that I'll be sending a lot of renal-diet dishes when The Boy goes somewhere. And sometimes he'll have to have his own snack when others are eating potato chips.

It's just one more thing that isn't "normal" about our kid. So what else is new.

I'll probably post again once I have done some more research and gotten some more info about what The Boy's diet (and consequently our diet) is going to look like. Thank goodness we already eat well, because if he were accustomed to a lot of processed, packaged food, we'd be up the creek.

Getting blood, but other counts are good

Looks like we'll be set for chemo starting Thursday. We figured it would be easier to start Thursday, even though we won't have Grandma until Friday.

He definitely needs blood. His hemoglobin is 6.5. There really is no good way to tell, other than by looking at him, and I am usually right when I say he needs it.

Getting it today hopefully means not needing it before leaving from chemo.

Coming up on chemo 8. Really seems like we are chipping away at it...

Monday, May 25, 2009

Every day is a holiday

My blog took a long vacation for Memorial Day. Or maybe I just didn't feel up to writing. No matter, I have all kinds of things to say to make up for it; hopefully I don't leave too much out.

Friday was [so long ago!] somewhat busy, but not so much in a bad way. I needed to pick up The Boy's new medication. A liquid compound, which I really didn't want--I might have preferred pills to crush. More on that below. It wasn't ready. He had poo, so we went back home anyway. Musical Daddy called, asking me to please bring him a saxophone from home. Honestly I think he forgets more stuff now that he works so close to home, and even more now that I am available sometimes to bring it to him. Anyhow, I then went to the bank because my ATM card was missing and had been for awhile, but I was pretty sure that The Boy just took it out and tossed it somewhere. By that time, the medicine was ready. I didn't have the prescription card so I had to pay full price ($117--yikes!). Then to the center for a blood test. They wanted to check up on his potassium level. Of course they say to stick around and it would just be a minute, and it was closer to an hour and a half. Very annoying. I didn't want to leave, though, because if he were worse off blood-wise, he might have needed to be re-admitted. We didn't even unpack Musical Daddy's car, for that exact reason. Still pretty darned high, around the same as it had been, so we are discontinuing the Vasotec. Now, he is only on Cozaar and Hydralazine, and Cozaar is only once a day, and very easy to slip a spoon of it into his yogurt.

Hydralazine, on the other hand, is a medicine to be taken three times a day. That's the compounded liquid. 5 mL per dose. It smells and looks like orange soda. Probably tastes like it too. The Boy HATES it. He doesn't puke it up, at least he hasn't yet, but he is very unhappy. And I have to give it to him a bit at a time, partly just to be nice and partly because if I give him 1 mL at a time and he spits it back out at me, I know how much to refill the syringe. The nephrologist was pretty clear that we need to be consistent with him about it and eventually he'll get over it and just take the medicine. This morning, he seemed willing to take it, until he realized that it was the orange stuff and not his Zofran, which he always enjoys. So it's been fun, having to hold him reclined on my lap and torture him with this stuff. Not to mention that because it is bright orange (the pills are too, though), it can easily get on clothing. "You give your kid orange popsicles?" Yeah I wish.

Saturday was fine. We went to the diner in the morning and of course The Boy was a gentleman. We went to CostCo in the afternoon and bought all kinds of stuff. I got some calcium gummies for The Boy, but I will be asking his doctors if they are okay for him. He also got a UV filtering swimsuit and swim top. Without diaper in it, so I have to get a few swim dipes. I'll probably order that when I order Baby Bear's diaper covers.

Sunday was also a great day. Grocery store in the morning (left some food in my car---ew!) where he was once again a gentleman. We started to notice him getting a little more pale--likely he'll need blood tomorrow. After the grocery store, we had a snack and just hung out. Then, when Musical Daddy got home, we took a LONG family nap. By the time we woke up, to heck with lunch; it was almost dinnertime. We went to Applebee's, and The Boy was active and playful, wanting to walk around the restaurant and smile at everyone.

By the way, parents and future parents: walking around the restaurant with your kid? Good. Letting your kid run around bothering people? Bad.

Being Memorial Day today, there was a parade. We went to breakfast, and then Musical Daddy went off to meet the band. He doesn't do such a great job all the time at telling me when stuff is and what to do in the meantime, so after wandering around aimlessly, we went to the parking lot where the band was assembled and met up with Band Guy's wife and little son.

Her son is maybe 13 or 14 months old. He is walking but not talking. He still has lots of baby rolls. Very cute! She says that it's fun to watch The Boy, being so independent and inquisitive, and talking and figuring stuff out because that's what she has to look forward too.

Hey--I'm just glad that he has gotten there. And she knows that. I like her; I wish we'd get to hang out more but The Boy can't always socialize.

The Boy seemed interested in the parade, but he also seemed tired and hot, so we went back to the car. I went to the gas station and then took the long way around to meet Musical Daddy at the end. The Boy fell asleep probably around the time I pulled out of the parking lot to leave.

A detour was in place at the end of the parade, and somehow I found my way around to a spot where people were walking home. There were some kids, little ones, in four-wheelers. As in, on the streets, driving them, with their parents right there. These are TOYS, not roadworthy vehicles, and these are kids. And one of them almost hit me. The dad said "sorry." All I could do was yell out the window, "That's not safe!" while wanting to add a more colorful word at the end of the phrase, but not doing so because I didn't want to set a bad example for children present, especially my own. I mean seriously, how would the insurance work for an accident like that?

This afternoon we had another nice nap, even though The Boy was fighting it for awhile. Then we went down to the "town square" for an outdoor concert. Just a bunch of bands playing stuff. Mostly inoffensive. The Boy was having a WONDERFUL time!! We probably kept him out in the sun too long but it was already getting a little later, so we figured that it wasn't a big deal. Highlights from that excursion include The Boy drinking out of a water bottle REALLY well, stepping up onto the curb without holding on, figuring out how to do the buckles on the stroller, and eating pizza. He liked it, then he didn't for awhile, but since that was what Musical Daddy had brought us, that's what we ate. I'm glad he likes pizza even though it isn't something that we plan to give him very often, with the sodium and potassium being an issue.

Then again, I figure that if his meds keep things under control, he can have maybe one meal a day, when he isn't in the hospital, that isn't as good for him in that respect. Like mac and cheese, pizza, or even *gasp* avocado. The chicken fried rice that I made him is pretty good for him because I know what goes in it and I only use a bit of low-salt soy sauce. If the BP is still an issue, then of course no pizza or mac and cheese, and low-salt ketchup only, and no orange juice and no avocado. Musical Daddy swears up and down that he read something about sodium not having much of an effect on BP, but the nephrologists have likely never heard of such a thing.

After returning from the concert, I went out to get Rita's ice. The Boy loves Italian ice but has no taste for vanilla ice cream or custard. I just LOVE that custard. He was saying "Ice!" over and over again.

On our walk back (out of chronological order), we talked as we sometimes do about how strong our relationship is. How being at home with The Boy when he was an infant was so amazing for Musical Daddy, and how the cancer stuff has made us closer when many families might have been ripped apart. I said that being home with The Boy when he was a healthy little infant, with normal infant problems, was so helpful to him now that he has to deal with cancer stuff as well because he just knows The Boy, probably better than many fathers know their kids. Not an indictment of anyone's daddy; just an observation based on our circumstances.

We went on to talk about what a joy and a treasure The Boy is. And not just to us--he is delightful to everyone he meets. He is sweet and charming and intelligent and the smiles just melt people. I admit, sometimes I gloat to myself a bit: "yea, my kid has cancer, but he knows how to act in a restaurant."

Just having kids with few or no medical issues can be a major strain on a relationship. Never mind having a kid with as many issues as ours. But again, we are stronger and more united because of The Boy. We also have our families to thank for their support, because if we didn't have them, we'd probably be struggling a lot more to bear the burdens.

We REALLY enjoy these times like this weekend where we got to pretend that we were a normal family. Except of course for the really bald boy. But we just have so much fun and we treasure every moment that much more, because it is The Boy. Every chunk of happy family time that happens outside of the hospital, where we don't have cancer at the forefront, is worth so much to us.

Happy Memorial Day, to those of us on this side of the pond. If you can read this, thank a teacher. If you are reading it in English, thank a soldier.

Thursday, May 21, 2009

A multitude of issues...

None of which I am prepared to really dwell on right now, so I'll give you the basic rundown:

Kidney is a big problem. Likely, he'll lose it. We don't know when. There are not many other options either and even though the cancer treatment and not the cancer itself (which is "gone" according to scans) is responsible for the kidney problems that he has now, the feeling is that treating kidney problems and even replacing a kidney if necessary is still easier than worrying about the cancer coming back. Easily more treatable.

I can certainly accept that. We just feel like we're choosing our poison here.

We have other issues as well. Calcium is low; potassium is high. Guess what has lots of potassium, even more than bananas: yes folks, avocados. And raisins too. Avocado has been a favorite over the past week. I was so excited because he needed that healthy fat. And he'd eat almost a half of the fruit. Probably more if I let him. As for low calcium, he doesn't drink milk. Ever. He loves yogurt and enjoys cheese, and I thought that was enough...maybe a calcium supplement? I'll ask some people who know about this stuff.

Anyhow, going to bed. Maybe I'll talk a bit more about this later.


Just waiting...The Boy now has an immune system, and his platelets went up. Hemoglobin not great...just above the needs-blood range. He is at the point, though, where it shouldn't drop more.

So let's have a fun weekend!

The owie is here but we might not be

The nephrologist wants to meet with us to discuss the process of managing The Boy's care. She thinks we may get to leave tonight or tomorrow. So let's hope. We will all be here. Hopefully if we do stay tonight, I can ask for a different night nurse. We are 0 for 2 in my opinion.

Pain still comes up from time to time. Tylenol might help. Massage definitely does. Hopefully he'll be better from this. Now we just have to get BP under control.

We can start by not waking him up every hour.

The worst, and the best

Last night's nurse was horrible. Just awful. Right from the beginning, when I arrived from a concert at school (more on that later), Musical Daddy told me that this nurse didn't wash her hands and also put a poopy diaper next to the sink. She was patronizing to The Boy. And, frankly, she looked unclean. Rough night, rough morning. I was already irritable from not having slept well and waking up for many blood pressures and multiple doses of ProCardia. When she woke us at six to give him an additional medication, and (shocker) he refused, even though I tried and she tried, and she continued to talk down to him as if it would help, I lost it. I told her to get out and just leave us alone for a minute. She didn't. She scolded me. I yelled at her. She left to call the doctor which she said she wanted to do, to figure out what to do. She came back and wanted to get him to take the rest. I tried. Then I threw the syringe. Not at her. Even though I wanted to. She proceeded to lecture me and tell me that he needs the medication and that she never sees anyone act like this, and I am having another baby and other stuff I don't remember but making me feel like a crappy mom because I couldn't get a toddler to cooperate...I just wanted her and her nasty self to leave us alone.

Yes, I acted poorly. I admit it. She was in a much better state than me to fix things, and she chose instead to make it worse.

On the other hand, here are some of the things that today's nurse has done:

-She repeated blood pressure measurements when she knew that she'd get a better one.

-She cleared The Boy's breakfast tray, without being asked, and wiped off the tray table and night table. Again, without being asked.

-She stayed and played with him for a few minutes so that I could use the restroom.

-She ordered meds an hour before they were due so that he would have them but that we would have time to get him to take them gradually.

-She changed the bed and got The Boy a new gown. Again, without being asked.

We had her after The Boy's first surgery. Since we are in ICU and not step-down/special care, we don't have our normal favorite nurses. Although, one of them actually stopped by after her shift just to say hello!

Ask any of THOSE nurses--we are cooperative and compliant. We want what is best for The Boy, and we want their job of caring for him to be as easy as possible.

It is just remarkable, to see the best and the worst so clearly.

Wednesday, May 20, 2009

At least he's happy

I am glad to see him so happy! He also, just now, had a nice piece of avocado. BP is still ridiculous. Temperature has been higher but not in the fever zone except that once.

He is about to get yet another dose of ProCardia, and he also got a new liquid med that is supposed to be for rescue as well. We just have to figure out the BP thing.

Two new cute boy tricks: he has started pointing at paper and asking, in order, for the letters in his name! Also he has been kissing my belly, where before he was only giving raspberries.

Or maybe not...

Temporal artery temperature just taken was lower. Hopefully it stays low and we can skip the culture, and still go home tomorrow. If the BP issue is resolved. Please please please...

THIS is what I was afraid of

Now, he has a fever. Doctor said we'll wait a bit. Then, a culture.

If this turns into another long stay, I will be mad.


He is going back on the Norvasc which I thought would happen on Monday.

If this fixes the problem, I will once again be irritated. Because it was what should have been done in the first place. I don't even know why they took him off it anyway.

The nephrologist wants to keep him at least overnight to see some better BP numbers.

We don't have them yet.

No news is no news

Nothing new. No sleep for the boys last night, pretty much. Leg pain might be related to low calcium. Or may be nothing major.

Blood pressure needs to be better before we can leave. That is about all.

Nighttime Update

I should already be sleeping because I have to get up really early to go and relieve Musical Daddy but I'm too hyper to go to sleep.

First of all, even though I hate hate HATE having The Boy be admitted, I did concede that it would be the best thing for him, to monitor and adjust with regards to the blood pressure issues. Of course we are scared as anything about additional infections, but the high blood pressure is pretty frightening as well.

Good thing: no IV. At least not for now. There doesn't appear to be anything that he would be getting intravenously. The IV usually contributes to the high BP which is the last thing we need.

Another good thing: no fever. Hopefully we'll stay that way. Pretty darned good considering that his white count was crap-tastic.

And darn it all if The Boy isn't growing those molars! The last set appear to be coming in. I checked for them this morning and couldn't really see or feel anything; this evening as his mouth was wide open for the sublingual (that's under the tongue) administration of ProCardia (rescue BP med), I saw those teeth. That was my suspicion for the original cause of his crankiness last night and this morning.The leg, meanwhile, is normal, and he hasn't complained about it in awhile. The doctor wants to see him when he is up and about, playing.

If my boy is in the PICU for teething, I'll be quite annoyed.

But seriously, teething can cause crankiness and pain but not blood pressures that would be embarrassing for my hypertensive mother. So I guess we're supposed to be there.

Now, ladies and gentlemen, I am very appreciative of the job that you have done with your no-fever dance. Keep doing that for now because we really don't want The Boy to have a fever either, because then we have to stay longer. However, for next time, could we just do a "stay the f out of the hospital" dance? Please?

No rest for the weary

Going home. Not him, just me. I'll be back in the AM to relieve Daddy. We shall see from there.

Tuesday, May 19, 2009

Nothing to do with anything

We got no feedback from the X-ray or ultrasound. They have no idea what is wrong with The Boy's leg.

However, the doctors have a thing with his blood pressure. It is crappy. Well, perhaps it is because he is in pain and every time they take it, he is angry. One or two times, it wasn't too bad, indicating that his BP isn't as bad as all that.

This is scary for several reasons. We REALLY do not want to be admitted for this. Hospitals are dangerous places. With sick people in them. He got sicker during his last unscheduled visit and I worry about that happening more often.

On the other hand, he isn't himself and hasn't been. I want to know why. His last BP, not angry, was still high. But he also didn't get his meds yet.

This sucks.

In the ER. Again.

Waiting for an X-ray on The Boy's leg. He doesn't have too high of a temperature (not enough to bring us here on its own). But he is a total basket case. And in some sort of pain...and otherwise not himself. I didn't want to go out, at all, but he needs some sort of medical attention. Let's just hope he doesn't get something extra while he is in the ER with no immunity.


Don't know what it is or where it came from, but The Boy has one. His right leg, the shin it looks like. He knows enough to say "owie" but the unfortunate thing is that it likely isn't anything that can be fixed or even diagnosed. I am snuggling with him, watching "Baby" (one of the Classical Baby movies) and rubbing his leg. It doesn't look different than his other leg. He is in pain but is not inconsolable. So tomorrow when we go back, again, to the center, I will mention it.

In A Mood

Last night The Boy was not happy. He was uncomfortable or mad or having nightmares or something. He'd wake up and complain, and then he'd grab one of us (an equal distribution, really) and settle down to sleep again. Repeat about 12 times.

He woke up this morning still pretty crappy. Fortunately he didn't have a fever. He did eat breakfast, but it took awhile for him to decide that he wanted it. I made eggs for myself that he swiped, and he did have a few bites of "wheats" (bite-sized shredded wheat) and yogurt.

We've been lounging around. He has still been a bit cranky. Still no fever, so I gave him Tylenol, guessing that it is teething or some other physical irritation.

Trying to stay low-key...

No luck finding someone to watch him tomorrow evening. I was planning to go to a concert at my school, since they are collecting money for The Boy's team, but Musical Daddy accepted an equally important invitation to a function with our niece. I have called several people. I can't ask anyone with kids to help, because The Boy can't be around kids. If he were well, I'd bring him to the concert, for sure. Any ideas?

Monday, May 18, 2009

But it does it when we're not here!

Ever to go the car mechanic or the instrument repair shop because your vehicle or instrument is, say, making a funny noise and you know that something is wrong and it simply MUST be fixed...

but when you actually get it there, the problem "fixes" itself?

Today's blood pressure at the center was high. Yesterday's was at home, too. After waiting on all of the cancer-related business, we went up to the nephrologist's office to see what we should do in terms of medication adjustments or anything else.

Perfectly normal BP. No problem at all.

She said that she did not want to change his medication at this time. She also wants more pee. Fortunately, she just wants a little sample, to be collected either in a bag or a cup. In the cup either way, but if he should happen to go in his potty, the contents could be emptied into the cup.

Also, more good news in the pee department: the protein in his urine has gone way down. It is still high, but it was 30, now it's 7, and it should be at about .2 so...we're on our way.

I mean it this time!

White count in the toilet. As in, they didn't even bother with a differential. Platelets 25, so we are waiting to see if the doctor wants to give him some now or later.

Now. You must do a better no-fever dance than you did last time. We mean it.


EMLA every time. Didn't do it this time, because I don't think he needs blood or platelets. But the nephrologists want a test done every week which requires a draw, not just a finger stick.

The nurse did a vein in the arm. She is good at it, so I figured that it would be done quickly, and I was right.

Waiting for counts. No idea what ANC will be; reds probably good, platelets likely okay too.

We shall see.

Saturday, May 16, 2009

How does he do it?

The Boy knows over half of the letters in the alphabet and all of the single digits (although he says "OH" and not "zero"). We did spend plenty of time watching Sesame Street in the hospital, with the occasional Word World and Super Why. But it's crazy--and we don't even "believe in" having him learn his letters and numbers. As in, we don't necessarily think he will read any earlier than either of us did (still early but not ridiculously so), and we didn't start emphasizing it with him until he showed an interest. He will press keys on the computer keyboard and name letters and numbers.

He has no idea what they mean. It's a stupid human trick. But it's fun.

Thursday, May 14, 2009

The Red Guy, the philanthropist, and the potty

As I've mentioned, The Boy has developed an Elmo habit. I was considering trying to convince him that our TV at home doesn't get Elmo, but I do like Sesame Street and I really don't dislike Elmo THAT much. It's just that he has other things that he enjoys watching that I just find so delightful, and Elmo is a little less so. Definitely tolerable. Barney is also tolerable. He kinda digs Barney, for the songs.

Initially, I didn't want to have anything Elmo other than maybe a few articles of clothing because I thought that we'd all be better off if The Boy thought that Elmo was on TV and that was it. He was given a little red Elmo doll while in the hospital, which was very cute. Today, I made another Elmo purchase.

The oncologist suggested that perhaps with The Boy's tendency toward staying dry during naps and only urinating every few hours that he might be ready to start potty training. We have started on a number of occasions but, like with anything else that involves routine and predictability with The Boy, we have a hard time keeping it together. We bought the Baby Bjorn Little Potty when he was very little, and it is much too small. I also purchased a little seat to go on the toilet itself, but he can't get up on that himself and it is too much of a production.

Today, I bought The Boy an Elmo potty. And he even pooped in it.

The way that it happened was, we arrived home, I unpacked the potty, and he was, of course, excited to see Elmo. I told him that it was a potty, which he got, and I asked him if he needed to go. I also gave him some juice.

He would wander around, and then come back in and want to get on the potty. This happened four or five times. He also figured out how to sit down on it himself, which is very important. Then one of the times, he sat down and, poo came out! Lo and behold!

I figured he still had to pee, but I was bragging on the phone to my mother that he pooped on the potty and I wasn't paying attention enough to get him back to the potty, so there was a puddle. Can't win 'em all.

It was a lovely day today. The Boy did wake up rather early. We had shredded wheat with soymilk for our early breakfast. We let my sister sleep in for awhile. We putzed around the house and played and such, and then we went to the diner for brunch. VERY good decision. The Boy had an egg meal--a scrambled egg, potatoes, and toast (which he didn't want). I had a broccoli and cheddar omelette, and my sister had a Spanish omelette. Everyone ate his or her meal very well. The Boy probably finished 3/4 of what was on his plate of potatoes and eggs.

We made a quick stop at CVS, and then we went on to my school to drop off some of the Valerie Fund posters and schmooze a little, considering that they are doing some AMAZING things over there to raise money for the walk and The Boy's team.

The principal of the school is kind of a big deal. So he decided that he'd get people moving on raising money and participating. Another one of the teachers in the school is in charge of the service organization (Early Act, affiliated with Rotary), and among other things, she got the district to provide a bus from the school to the walk. With room for about 50 kids. There will be a table and collection cans at the concerts next week. This is going to be HUGE.

We could potentially win the prize for biggest team. Or even most money raised. Or, most spirit. Who knows? Thanks to so many of the wonderful people I have met at work. Not to mention all of the other wonderful people who have gotten involved and donated to the team and are going to walk with us.

You know, of course, that The Boy is a major philanthropist.

Anyhow, he fell asleep on my lap over an hour ago, so I'm going to try to move him into bed. Ciao.

Wednesday, May 13, 2009


A common "problem" with little nurslings is that only Mom can get them to sleep. With boob of course. The Boy isn't nursing but sometimes it seems like Mom is the only one who can get the job done, at least at a reasonable time. He likes to stay up and party with everyone else. I don't even get to "cheat" by giving him mommy milk anymore. He just likes to sleep for Mommy.

I went to orchestra, Musical Daddy has a gig all week, so Aunt W, who was here, watched him. He was very good, she said, just not interested in sleeping. Didn't take much time for him to fall asleep in my lap.

He looks so perfect.

This evening before I left, we got to play!

Ciao baby!

Leaving as soon as The Boy is de-accessed. AND, we don't have to go back until Monday!

We will be careful, give Neupogen, give Zofran, and you all need to find a better no-fever dance than you did last time.

The Duh Factor

So here we are, still. The Boy needs blood. However, the resident, who looks about 12, did not order the type/cross when she ordered the CBC. Stupid mistake. She said she didn't want to draw more than necessary. That's her excuse for "I just didn't do it because I'm not that sharp." She is waiting to see what the oncologist says. Okay, his hemoglobin is 6.-something (other counts are good for now). That's not a "go home and come back tomorrow" number. That's a "need blood now" number.

Another annoyance: The Boy has blood pressure meds. One twice a day, one once a day. The smart thing to do, which is what his oncologist said, is to combine the two in the morning, to increase the chances of him taking it. No, they decided that the first med comes at 6:30 and the second comes at 8:30. The first was given in yogurt, no problem. The second was given in a bit of juice, sucked up with a straw, and spit out. Of course he had a white shirt on. He spit out the remainder that I tried to give. Rather defiantly too. I called to repeat the dose and get a new quilted pad, neither of which have come. The Boy has on shorts and no shirt. And, now he is falling asleep.

This is why I dislike being here. Absolutely nothing is happening now. Just wasting time.

Tuesday, May 12, 2009

Stem Cells

Rebecca posted a comment on my last entry that I felt warranted an answer in a separate post.

We will be banking cord blood from Baby Bear. Since we have a child who is currently undergoing cancer treatment (and even if he were done with treatment and in remission, we'd still be eligible), we receive free cord blood banking and five years free storage from ViaCord, through their Sibling Connection program. After five years, we can either donate it or we can spend the money to continue to bank it.

There are some cases of Wilms in which they do stem cell rescue paired with high-dose chemotherapy, but the stem cells are harvested from the patient. Hopefully, The Boy will never need that. Donated stem cells can sometimes be used to treat leukemia, which we REALLY hope we never need.

Of course, no one really expects that they'll need any of this stuff, but sometimes people do.

What I don't get is, why don't they just take everyone's cord and placenta, unless they don't consent or decide to bank it privately, and use THAT for stem cell research? Why all this bellyaching about sanctity of life when you're just using something that may otherwise be thrown out, that helped give life to someone...probably because it is too expensive, and much more fun to complain about.

Speaking of stem cells, they are in breastmilk. Go boobies.

Another night, another dream

We stay. Didn't actually hear it from the doctor, which might have been nice, but The Boy needs extra hydration. Possibly the kidney issues, also the late start to chemo yesterday and today.

Pros: the nurse will do diaper duty overnight. The extra hydration after this chemo is a good thing. Don't have to make a late-night escape.

Cons: more hospital time. More waiting around. Less sleep for Daddy, maybe. Maybe not if he manages to sleep through the diapers and last Mesna dose.

The doctor said that five day stays for this treatment, even though it is supposed to be five days, are rare. We forgot this. Oh well.

Gonna be a long, late night...

The boy started chemo a bit after 2:30. Add nine hours to that and we end up leaving REALLY late.

I was thinking maybe we just stay the extra night...but I would just as soon get out. Grab The Boy and go.

This stay was mostly uneventful. Rather nice when that happens. Most of the chemo stays have been that way, but the last thing we want to do is to take that for granted.

He is sleeping through his first chemo and will hopefully sleep through the second, where his BP is taken several times.

We had a nice long chat with a patient representative today. And just now, the housekeeping manager came to see me. We have been voicing concerns about the level of cleanliness. Hospitals have sick people that shouldn't be getting sicker and shouldn't be giving or receiving germs either.

My sister is coming in tonight but will likely not be with us until tomorrow, unless she happens to get on an earlier flight. I may ask to have her with me, if she gets here early enough. I don't expect her to wake in the middle of the night for diapers, because her medical issues make it so she needs sleep. But if she is here she can give me extra time for napping.

We didn't get much chance to return to a normal routine after the long hospital stay, so I am almost unsure as to what to do with us!

Monday, May 11, 2009

Another delay? Well why not?

The Boy was supposed to get chemo at 12:30. Nope.

There was port trouble yesterday, and he ended up being off the hydration last night. They checked at 10 or 11 and he still wasn't there yet, even though they had long since put him back on the fluids. The measurement that they take is called specific gravity, which refers to the concentration of his urine. The higher the number, the more concentrated the urine and the less hydrated the patient is.

His 12:00 diaper was very wet and the measurement taken at around 1 was good. Unfortunately, there was once again no blood return from the port. Not wanting to take any chances giving chemo into a port that wasn't working, the nurse called the oncologist and got TPA for the port. It's something that goes in to make sure that it works, and it did, and it was fine. Of course, it has to stay in for an hour. And, of course, things don't happen right away in the hospital anyway, just because they don't.

He is getting his 4:00 Zofran and will start chemo at 4:30. Not sure how early they can start chemo tomorrow, but because of the 9 extra hours for Mesna, which is very very important, we'll likely be leaving REALLY late tomorrow night. If they don't just keep us the extra night.


Once one's fault, really.

Of course, if there were port trouble, I'd be checking the port more often to make sure that it was working, and perhaps the lack of blood return could have been discovered earlier, leading to the TPA being put in earlier...but what the heck. Not much that can be done about it now. Just waiting.

Let's pass the buck, why don't we...

There was a news item this morning saying that students are graduating from New Jersey high schools and are "ill-equipped" for life and for the first year of college. Here is the story itself. It doesn't directly place the blame on anyone, but it does imply that much time and money needs to be invested in order to discover the root of this very complicated problem.

Now imagine me saying this and trying very hard not to laugh.

Joking aside, we do have several problems right now in education that likely contribute to high school students not being ready for college or jobs. The issue cited in the news story says that students are going to college and are needing to take remedial courses, resulting in a need for more money being spent on college, and that this is the fault of the high schools. Well, maybe. But the more obvious solution is that if a student isn't ready for college or requires too many remedial courses, the student should not spend the money on remedial courses in any place other than community college, which is not the same sort of expensive that other institutions may be. There is also a major shift that has occurred over the past few decades, in which a lack of a college education makes it more difficult to break into several professional fields. Jobs that required a high school education and perhaps a bit of additional training now seem to require college degrees. Whether the college education is actually useful for the job or not. And then, more people are encouraged to attend college in order to compete for the jobs. Regardless of whether they should...

Does this have anything to do with high schools? Maybe. Maybe not. Students need to be more aware of their skill level. Standardized tests sometimes reflect this accurately (and sometimes they only reflect how good a student is at taking tests) because they are not graded by the student's own teachers, and grades do not tell the story very well anyway. Not to mention, they are subject to influence. The schools need to be honest with the students about something like remedial coursework in college, even if it isn't the easiest information for them to swallow.

Then, of course, we get into the problem of some schools having many students who require remedial coursework and some not. Does this mean that we go ahead blame the schools themselves, if they send more kids to college who can't quite do the entry-level coursework yet? Sure, if you want to blame schools themselves for the people who live in the district and go to the schools. My mother brought up the point that some parents have no idea where the school is when called in for a conference. And if that's the level of involvement, then it's no wonder that students and parents are being surprised.

But to say that it is entirely the fault of the schools themselves for not providing the coursework, as the commissioner of education is quoted as saying in this article, is pretty ridiculous. She obviously hasn't been to any schools recently. Many students who have gone on to be successful in college, especially those who attended "troubled" schools, have done so because they made it their business to get the right information and do the work. Self-motivated students are the ones that get things done. Students who expect everyone else to do their work for them are the ones that struggle later on in life. Blame the teachers? Very easy to do, and sometimes might be an appropriate response as we certainly aren't perfect and can make mistakes or overlook important issues, but students need to take responsibility, as do parents, for cultivating strong professional relationships with teachers and counselors and other school personnel so that the students get the most out of their school experience.

Another issue is that students complain of time constraints. Parents--what exactly ARE your kids doing when they aren't in school? If you don't know, then that's a problem. My readers know that I teach music, as does my husband. Don't tell me that music takes up too much time and that students don't get their work done because of musical involvement--one year my husband had students ranked about 1 through 15 all in his band. Somehow they manage. It's generally not the kids who spend the time on music in school who have the issues--try again. A very unpopular postulation? Sports. Not all sports, not all kids, but the sports schedules are much more intense than the music schedules. Some kids can handle it, and some kids can't, but heaven forbid we tell a kid that he would be better off not participating in a sport because he needs to do his schoolwork. Another unpopular postulation: how dare we forbid a child to go out in the evening? She might not be as cool as she would have been. It's not fair. Of course it isn't fair. Why is it that some kids can finish homework in half an hour and for others it takes three hours? Not fair, and not fun, but if the kids who take longer are interested in the same pursuits as the kids who don't take as long, they need to either work on a way to work more effectively or they need to resign themselves to spending more time.

The attitude of "oh, it's school, it sucks, I go there and go to my classes and listen to my teacher ramble on and then I do my homework" just doesn't work in college, nor does it work in many jobs, and people are shocked about that.

At some point, everyone needs to develop some personal responsibility, and it has to happen in high school because, generally, people reach adulthood and finish high school around the same time...and if they don't "get it" by then, then that person has problems to work out.

Which is okay. Sometimes people do need a little extra space to mature. But don't blame the school if you didn't do your homework. Don't blame the school if you acted like a jerk to all of your teachers and as a result have not been receptive to what they've told you. Don't blame the school if you spent your weekends drunk.

There are plenty of instances in which the school or the teachers are at fault, but those are generally individual issues, not ones that need to be studied extensively by the commissioner of education.

Perhaps she could take the time to provide maps to parents who don't know where their child's school is located.

Sunday, May 10, 2009

A Logical Mother's Day

We like Mother's Day. We've had hit-or-miss Mother's Days in earlier years (in terms of my family of origin), but recently, over the past several years, we've gone through attitude adjustments for the better and figured out that as long as we are together or at least in contact, and we have some good food and take pictures, it will be a happy Mother's Day.

This year both my mother and I have REALLY earned our stripes.

First, about my mother: our relationship as I was growing up was sometimes strained, because she wanted the best for me, but we sometimes had communication issues. I frequently didn't understand why certain things had to be a certain way, and she didn't always do such a great job of explaining. The older I got, the more I understood. Sometimes she made mistakes. Sometimes she was stubborn. Often, I was a total pain. I fell in line most of the time regardless, but there was kicking and screaming. You know, the usual. Makes me glad that I have a boy and another on the way. Granted, my brother and my mother had a similar relationship, so having only boys is no guarantee that I'll avoid having the same troubles that my mother did.

We all grew up, not just us kids but my mother as well. Dad was usually along for the ride regardless. He's pretty great...but I'll talk about him more as Father's Day approaches. The fact that we all turned out to be successful and happy adults with very few major issues has definitely allowed my mother to relax and be lots of fun. She is very heavily involved in our lives, and we welcome it. Most of the time.

In particular, my mother has been very involved (as has my father, as has my father-in-law...but again, we're not on them right now) in The Boy's treatment. Even before his diagnosis, my parents made it a point to see The Boy about once a month. After his diagnosis and when we were still just doing the outpatient chemo, they continued that practice. They planned a visit in October and, as it turned out, The Boy was in the hospital for a fever. That was the first time that my mother offered to stay overnight in the hospital with him, and she decided that she liked it and would offer to do it frequently. My mother was there for his second surgery in Philadelphia. When he was put on the new chemo regimen, and we learned that his stays for treatment would be every three weeks, she decided that she would stay overnight in the hospital with him for most or all of the treatments. She and Musical Daddy agreed that with my being pregnant, it wasn't an option for me to stay in with him anyway because of toxic pee. With the exception of that awful first stay, where we were all sick, the chemo visits have been very easy (and we hope that they stay that way). My mother says that she really enjoys herself, and while I don't want to take advantage of her or take her for granted, I am so grateful that she does come in for these visits because it is pretty much the only "time off" that I get. She encourages Musical Daddy and me to get some time out. When she comes here by herself, I encourage her to come out with me a little bit too.

I realized after talking to a friend of mine who has two grandchildren, one a year older and one a year younger than The Boy, that many grandparents would be itching to get the kind of quality time that my mother gets with The Boy, even if it is in the hospital. As a result, The Boy LOVES Grandma so much, to the point where last night we went out to the movies and he didn't cry or get upset when we left, just said "bye!" and blew kisses. It makes us feel so good to leave him with my mother, because we know that he is completely comfortable and won't get upset, and she knows him well enough to know what he needs without some of the guesswork that would otherwise be required with a kid his age and a less familiar caregiver.

My mother is well-known as a caring and giving person. She takes care of everyone, not just her own family. She has made a difference in so many lives, and we are incredibly lucky.

I wish I had gotten to know Musical Daddy's mother better. She seems to have been cut from that same mold, in that she made a difference in so many lives and was known for being an exceptional person in general. One of the greatest testaments to her as a mother, aside from her sons and their successes, is her granddaughter, for whom she was the primary mother figure for so long. I am certain that were she still around today, she would also be taking excellent care of The Boy.

As for myself, I don't usually expect anyone to make a big deal about holidays or birthdays or anything, because it's just not that important to me. I have such a wonderful family and I'm glad to have them. I am grateful that one of my friends, and one of my sisters as well, have turned me onto pedicures, because it's a little luxury that I can be treated to every now and then, either in honor of an occasion or just because. I like dinners out sometimes too. Especially these days, a great gift is the opportunity to go out with Musical Daddy for a meal or a walk. Another great gift is being able to go somewhere with both him and The Boy and just have a good time.

Of course, so much has changed between last Mother's Day and this one. I've had to do a LOT more than I ever expected in terms of performing my duties as a mother. Musical Daddy does a fine job of letting me know just how important my job is (as right now, I don't really have any other job) and thanking me for taking such good care of our boy. It makes a difference, I know that it does, and he is better off for having me to care for him all the time. The Boy thanks me with hugs and kisses, and by saying "hap-py" when I'm holding him (that was unprompted the first time, by the way...), and saying "I love you" and just being as sweet as can be. He's not perfect, as no child ever is, but he is an amazing boy. Which, by the way, has not changed. I still hold by my theory that the extra love and attention that he has received as a result of his illness have made him even sweeter and even more loving. Last Mother's Day was certainly less complicated, but I have a much greater understanding of how lucky I am this year.

Saturday, May 9, 2009

Something that isn't inherently sad

I enjoy watching Scrubs. TiVo records episodes for us, and we always have something to watch. It keeps me company while I fold laundry.

The main character, J.D., is an affectionate, friendly, intelligent but sometimes too self-involved, young doctor who goes through his entire medical training at the same hospital, surrounded by many of the same people, including his best friend since college. The other characters on the show complement J.D. rather well, and the show is surprisingly accurate in terms of medical operations.

In one episode, J.D. is explaining to his friend how to appear more sensitive, in an effort to appease someone whom he had wronged by criticizing that very quality. J.D. instructed his friend to talk to the other person about something that isn't inherently sad and, with the help of artificial tears stealthily applied, he would appear to be more sensitive.

It is with this principle in mind that I admit to you that I watched the series finale and cried. A lot. Then I watched it again with Musical Daddy, thinking I was safe. As I lay in bed last night, starting to formulate ideas for this blog entry, I cried some more. I tend not to go to sleep upset, so this was odd for me. Usually I have the good fortune to talk through things.

I should also mention, if you do not know me well, that I am not a crying sort of person. I didn't cry at my wedding. I didn't cry when The Boy was born. At least not right away. I did a bit, later, while on my own. And while I have shed several tears over the course of The Boy's ordeal, I would say that Musical Daddy consistently remains the more emotional of the two of us.

He would say the same.

So why the tears? The show is not inherently sad. The finale did make several other people cry, but as I said, I am usually less vulnerable to displays of emotion. Pregnancy hormones? Perhaps. I haven't been too bad in that regard, but it could be a factor. An exceptionally well-designed show ending? Also a factor. I don't want to spoil it for anyone, so I'll just say that it was a satisfying conclusion.

Again, though, the experience is not inherently sad. Maybe it was the circumstance. I was sitting in the recliner with The Boy asleep on my lap, watching this show before leaving for the center. Although we had been discharged from the hospital on Tuesday, we had had no break from the hospital, even though Wednesday and Thursday were "only" clinic visits. More to the point, The Boy had a very full bag of pee strapped to his leg, making walking a challenge. I remembered the events of the previous day and how much he needed me for security. I love that, by the way. We were anxious about this test, worried about something else that could kill him. I mourn the fact that every holiday or occasion makes us overly thankful that he is still there, because we "shouldn't" have to feel that way.

Thursday night was such beautiful relief. Once Daddy came home, The Boy spent about an hour just being...The Boy. Silly, giggly, impy... and we laughed so hard for so long. We needed it.

Anyhow, some experiences may always be that way for me. Not inherently sad, but with the inclusion of that extra subtext, enough to bring tears to my eyes or at least cause an emotional reaction.

Friday, May 8, 2009

What counts for excitement and happiness

In all fairness, I always say that we experience so much joy in our lives from day to day, and I mean it. We enjoy our son so much and have so many wonderful moments together. Last night was hilarious, in particular. He was up late, walking around, giggling, bringing stuff back and forth, waving, blowing kisses, and we were laughing our heads off.

It's pretty odd, though, the type of stuff that does make us happy. Nevermind the stuff that we put up with and pass off as normal...I actually look forward to chemo, because it means that The Boy has recovered enough to receive the treatment. And, of course, it's one more chemo in the giant regimen. This is number 7 of actually sounds like progress, doesn't it?

I repeated what I said in an earlier entry to one of the nurses, that it was pretty darned sad that I only THOUGHT that the 3-cath day, watching The Boy being tortured, might have been ONE of the worst experiences in this whole ordeal. The fact that I might have even had to think about it. I guess it really wasn't, because the whole Philadelphia experience was MUCH worse, because it was torturous for days on end, and he was miserable, and instead of letting him get his mama milk (even after he did poo), they'd just drug him. They were rather forthcoming with the drugs in that hospital. Even when we went for his biopsy there, the sedation that they used was stronger and they also gave him an additional drug before taking him away from me so that he wouldn't get upset. I still get angry thinking about that place.

I wasn't angry about the failed caths. I wasn't blaming anyone for it--The Boy was unconsciously being stubborn. His body was refusing to allow the procedure, and they had to figure out the right way to circumvent his stubbornness. I was very glad that I could be there for him, and even more glad that he demonstrated so clearly that he needed my support and affection.

As we say, he doesn't have blankets or stuffed animals--he has people. Watch him go to sleep--most of the time he has someone's arm, or he is snuggled up close to someone. He is able to fall asleep on his own, if he is so inclined (because I've seen it happen).

It makes me happy that he loves me so much. And that he loves Musical Daddy so much. Additionally, it thrills me to no end to think of the love that he has for his grandparents (and I wish that he could have known his paternal grandmother).

I have some mother's day thoughts coming up for the weekend. But I'll save them, because I'm tired and I have no idea what I've written in the last few paragraphs. Good night.

Some news we could use!

The results of the creatinine clearance test were good! Some more elaboration on that (and this is just from what I've been told; I haven't yet followed up by reading up on the test itself):

There is a routine blood test that measures the levels of creatinine in the blood. If that level goes up, it means that the body is having a hard time processing it. It is a protein, by the way. The measurement is more accurate with 24 hours of urine, apparently (jobs that suck...) and gives more information. The Boy's 24 hour urine measurement was normal, and they don't have to redo the urine test again unless the number from the blood test goes up. Which is fantastic news, not only that his kidney function is still good, but that he doesn't have to be cathed again for awhile. That was probably one of the most hellish experiences we've ever had.

And it's sad that, considering how awful it was, I don't even know if it was indeed the most hellish. Such is our life.

It seems we've been here before...

Back in the hospital, this time for chemo. Test results were apparently pretty good. Not sure what they were yet.

Same room we've been in for the past several stays.

I do have all or most of our stuff but I am waiting for my wonderful parents to arrive so I can set up properly.

Wednesday, May 6, 2009

A kidney patient, and a cancer patient.

Here is Musical Daddy's post on our current situation.

We talked about this whole situation at length this morning, and yesterday evening. We've been rather fortunate with his treatments, overall, in that we've avoided many complications and side effects and extra hospitalizations up until now. The problem is that the radiation is hard on the kidney. The chemo is hard on the kidney. The kidney is compromised already, from the cancer. I think that we have been underestimating the "kidney" part of the kidney cancer ordeal. Until recently, his blood pressure has been good, which is a decent indicator of how the kidney is doing.

Was it a mistake to let them do the radiation? Probably not. It is another way to make sure that the cancer stays away. The toxicity of the chemo could result in him having less of it. Probably less medicine per treatment, same amount of treatments. Either way, I think I feel better about him having had an additional treatment type to keep cancer from coming back, as we know that his tumor did grow back on one chemo regimen.

One of the nurses said that she has seen this type of reaction to radiation/chemo and that sometimes it can take some time to resolve, but it does. The (less scary) nephrologist told us that she feels relatively optimistic about his current kidney function, and that the better his creatinine clearance test is, the less we'll have to do this test.

This is the test that requires the catheter. The less often THAT has to happen, the better.

But really, these past few weeks have reminded me that this is serious business. As in, we could easily lose him.

So I'm trying to enjoy him. He makes it easy; he is so sweet and precious.

Call in the expert!

1:15 was when the catheter was successfully inserted. By the urologist. What a miserable day.

So we come back tomorrow to get the tests done. Also, a few blood draws. Including one to find out if we're doing chemo on Friday.

They want a fasting cholesterol test. They are SO not getting that tomorrow afternoon.

Cath 2--more epic fail

This time, they couldn't even get it in. A valve in there was shut and stayed shut. That's him being stubborn without intending to be.

So now the nephrologist is talking with the oncologist and nurses. Problem is, they have to do this test a lot. And if they can't...I don't know.

Tired of waiting, part 95200638388

Waiting for cath #2.Taking forever. At least he is having fun in the meantime.

And he now likes corn muffins.

Swingset is still waiting...

Catheter--epic fail

Attempt 1 to cath The Boy didn't work. Misery for nothing. There was nothing in his bladder. Happened last time he got cathed too.

So we wait and do it again. Crap.


He fell off the chair and bit his lip. Normal silly boy stuff. Still mad. Good thing there are a bunch of nurses here. And it stopped bleeding reasonably well, so platelets must be okay. Waiting for a catheter. Fun. Then he has to wear it at home. More fun.

I wish he were still nursing a bit. This would be easier.

Tuesday, May 5, 2009

Finally leaving!

We are going as soon as he is de-accessed. Much much more to follow.

This is what we're supposed to see

The Boy and Musical Daddy are in the bed, playing and having a nice time. They are both in good moods.

He just said "happy" too. I'm glad that he is.

This is how things should be...except not in the hospital.

Drama drama

Port problems, requiring re-accessing. Not sure yet if his BP is down yet from all that. I took it with our machine.

Mine was still better.

He decided to like pretzels when the nephrologist came in, and she is telling us to limit his sodium and potassium. Cheeky monkey.

He hasn't had a good nap yet. They woke him for BP and also for the reaccess. He is drifting off right now. Finally, maybe, he can get his rest.

Pushing Buttons

Boy snuggled with Grandma, BP was 105/66. The nurse left it up on the monitor so that we could see it and feel better about a decent BP.

I then took the measurement with our machine. The bottom number was similar; the top number was higher because he was mad at me for taking the BP again.

Or, possibly, because I didn't let him press the button as I did when we were playing with it before.

Under Pressure Part 2

Grandma stayed again last night. When I talked to her this morning, after starting laundry and changing our sheets, she told me that The Boy had thrown up after eating "first breakfast" but seemed okay. She called me again when the nephrologist came in.

The Boy's blood pressures were high again last night. He was given Pro-Cardia twice overnight, and she said that there is protein in his urine. Big problem. She said that she is going to adjust his medication again, and she told me to buy a blood pressure monitor, which I did. I brought it here so that we could test it. By the way, my BP was 117/75. Perfectly fine for an adult. And better than The Boy's. I also tested his cuff (he gets his own) in the machine on my own BP. Similar measurement. We'll have to check it against the monitors in here to see how it compares.

Initially, after speaking with the nephrologist, I just lost it. I got scared that we'd lose him. It just...didn't make sense to me. I am very irritated that the IV line isn't being considered as a factor. The amount of fluid that he gets in a day is roughly a bottle of water a day, or half a liter. It doesn't seem like a lot, but that is what is being pumped into his veins as extra fluid to be processed by the kidney. I said "kidneys" but that's not what The Boy has. He has never been on a line for this long and it is, according to the doctors, the minimum amount required to keep the vein open and prevent clotting in the port.

Anyhow, after getting myself together, I bought the BP monitor and went to the hospital. On the way, Grandma called and said that The Boy had some more to eat and was fine.

He doesn't have high BP in the hospital normally...because when he is in for chemo, his BP drops.

I just hate having to medicate him so much and my fear was that once he is home and off the IV but still on all the meds, his BP would be so low that he'd just shut down.

Good news in the medication department, though: he is cooperative in taking small crushed pills when we mix them with purple grape juice. He drinks some with a straw and the rest straight out of the medicine cup. Grape juice is a strong flavor. We even had to wake him to take something and this method still worked. He wasn't thrilled, and he didn't go back to sleep afterward, but he did take it. It was BP medicine, which is pretty important for him.

Grandma is leaving today and will come back when The Boy has chemo. Hopefully we still go home tonight, but if his blood pressures stay high, we might not, was the feeling that I got from the nephrologist. If he doesn't go home tonight and is just monitored for BP, maybe he'll be off the IV fluids, at least, and the pressures can go down from that.

Monday, May 4, 2009

Infection Control Rant

Today Grandma requested that we speak with someone from infection control. They called (while I was out) and she insisted that someone come in person so that we could have a face-to-face conversation, considering all that we have been through. It was a rather interesting experience.

My first question to her was, why do the doctors and nurses only start to wear little protective gowns and gloves AFTER The Boy is found to have the C. Diff or whatever else they implement these protocols for, when it would make lots and lots of sense for them to do the same for him when he is severely neutropenic? Wouldn't it make more sense to try and protect HIM instead of just trying to protect themselves? Her response was that the Centers for Disease Control set the protocols for infection control, and that is what they follow.

My followup question was, why are shoe covers not included in this protocol? She responded that healthcare workers do not frequently touch their shoes and it hasn't been found to be necessary. My response? Patient A throws up on the floor and even though it is cleaned, some germs still find their way onto the shoes of the nurse. Then she goes to see Patient B. The infection control specialist said that she hadn't really thought of that. Seriously? Then we said that even though we have a playmat and we wipe The Boy's hands, it can't be helped that sometimes active toddlers touch the floor. And she responded that at home you have the same problem. Fine...but in our home, visitors always remove their shoes or cover their shoes, no exceptions. She was a little bit convinced that the procedure might need to be different for pediatrics but held fast to her stance: the CDC requires this as a minimum, so that's all we're going to do.

We next discussed the curtain in the front of the room. I hadn't even thought about it until my mother brought it up, but 5 seconds on Google sent me first to this article . As in, didn't take me any time at all to find info indicating that hospital curtains are a problem. The person we spoke with said that the curtains are changed every 30 days. The nurse said that it is supposed to be changed when they clean the room after discharge, but she doesn't know either way whether they do it or not. Hmmm.

My mother brought up the issue of diapers, with the little patients. The diapers have to be weighed because they measure output. But what they do is, they take the wet/dirty diapers out of the room into the "general" public and I can't imagine how that is good for minimizing infection. One of our nurses last week said that it would make all kinds of sense for each patient in diapers to have his own scale in the bathroom. The Boy has his own. For him, it doesn't do much good, but it protects other patients from him, if he has something. The person said that she would look into the diaper procedure.

Overall, we felt like we were talking to a wall. Know how you talk to someone on the phone in customer service and they have a script, and they really can't say much else? That's what we felt like. But I almost felt vindicated, because I felt like it wasn't our imagination that there is something seriously amiss with hospital infection control policy. There really is something the matter, and it comes right from the very people who are supposed to be controlling things.

And, of course, preventative measures are never worth it to those crunching the numbers even though it would save all kinds of money and energy.

Marching Orders

Tomorrow evening, following The Boy's last dose of Flagyl, we're kicked out.

We are coming back Friday morning, to the treatment center, to see if his counts are good enough to do chemo at that point.

Of course, Tuesday night is the worst time to leave the hospital for me, because Musical Daddy has rehearsal. Grumble.

So we have to be careful with him, still, on Wednesday and Thursday. But we can do fun things like play on the swingset, go for walks, draw on the driveway with chalk, and just rest at home.

Without an IV pole. Goodness gracious are we glad about that.

Grandma will be taking her flight home tomorrow after all, and she said that she'll return here by car whenever The Boy does, in fact, start chemo.

CBC still not where it should be

White cells are still not fantastic. Platelets are at 55. Hemoglobin is the only acceptable number, at 9.1.

I'm not feeling like chemo will happen tomorrow, so I guess we find out when his last dose of Flagyl will be and then we go home for a bit.

I was hoping that we'd just do the chemo right after and get out for awhile. Maybe we'll at least have some good weather.

Bring on week 3...sigh...

We are waiting on the results of The Boy's CBC from today to give us a better indication of when chemo will be starting. I think that my preference is to just stay here and get it done as soon as he is ready. Which means, of course, that we'll probably have to leave and then come back.

The temperature issue resolved itself over the course of a few hours, so they didn't end up doing blood cultures. Thank goodness. For anyone interested, I asked about the first culture from 2 weeks ago, and the doctor said that the bacteria grew in clusters, not chains.

We have made some new cancer friends. Not sure if we'll be in touch or not, but I made contact with the mother of a middle schooler and the parents of a 4-year-old. Both new diagnoses, both leukemia. Leukemia seems to be a little more complex, and treatment seems to be more intense at first and gets easier if a satisfactory remission is attained. I don't know much about it; I'll look it up. Still a very long course of treatment, and the state of high alert is required for longer with patients and families. No matter how you slice it, cancer sucks. But it does help a little bit to make new "cancer friends" and to be in a position to tell them that yes, it's pretty lousy, but the treatment center is great (I saw the older patient with her mom this morning and mentioned that they have PS3 there), and that there are other resources available, and to call me if they need things because sometimes I'm in a position to help.

I abandoned this post at this point because of something or other. It's hard to remember stuff while in the hospital. For example, if someone calls and you tell them you'll call back after vitals or something like that, you just...forget. Nothing personal. It just happens.

The Boy had an okay breakfast and a good lunch. Thinking about it, his eating over the past few days has been average, as opposed to earlier when he'd just eat and eat and eat. I bet he grew.

Sunday, May 3, 2009

Under "Pressure"

The blood pressure thing is still not so under control, and today he looks puffy to boot. Also, this afternoon his temperature has gotten up into the "go to the hospital" range but only just so. The oncologist was there around that time, and we joked that we'd have to pack up our stuff and hurry over to the ER. She got a kick out of that. It stayed there, but no higher, after his nap.

At the time of the first temp, The Boy was playing with a ball that I brought upstairs, throwing it to Musical Daddy and to the doctor. He looked pretty good, and she said that we'd wait on blood cultures. Because it's just what we need--another infection.

Still not sure when chemo starts. No clue. So we may go home Tuesday. And then come back. So we have another week here, but we don't know if it is consecutive or not.

Saturday, May 2, 2009

Happy boy

The Boy has learned the word "Happy" and said it while sitting on my lap, snuggling...he said "hap-py...hap-py... hap-py" and then later on, when we were resting, I asked if he was happy and he said "hap-py" again. Such a sweetheart.

In The Loop

I left the hospital yesterday afternoon so that I'd be home for the guy fixing the shower. I also got a little nap on the easy chair.

I rested at home until it was time to leave for a concert. I had been planning to go back to the hospital at dinnertime, but Grandma said that she was just fine with The Boy and not to worry. And I really don't, because Grandma is the best.

The concert was great. Additionally, there was a guest conductor who was the Director of Bands while I was doing my undergraduate work. I played in his bands for a few years. He remembered me, remembered Musical Daddy, and of course asked where he was. I told him that Musical Daddy was directing his chorus at their contest this weekend. He said that I looked the same as I did when I was a student. He didn't mention the watermelon that I seemed to be carrying under my dress. But that felt pretty good to hear, considering that I was 20 years old the last time he saw me.

The director of the wind ensemble was also glad to see me and asked about Musical Daddy and The Boy. His wife is a colleague of mine (or was, anyway, and hopefully will be again) and a friend, and it was nice to see her and another colleague that evening and talk about music stuff and school stuff and think about things that normal people do.

I was glad to get informed, anyway, about some positive and some negative things that have been going on in our school and our district.

I woke up every few minutes starting at about 6:30 because I have been so accustomed to getting up that early...but I really wanted to stay in bed longer. Finally I dragged my tired self out of bed and into the shower at 7:30. I stopped at the store to pick up more grape juice and some ginger ale, along with a few other items, and I arrived at the hospital around 9:00.

Grandma said that The Boy had a good night. He was up at 6:30--maybe he was channeling me so that I'd wake up with him, even though I wasn't there. Who knows. I don't yet know how his blood pressure has been. I should have thought to ask.

Currently, he is taking 5 mg of Vasotech in the morning, and 2.5 mg of Norvasc in the morning and at night. He tolerated my giving it to him in grape juice--I put a bit in the cup and he drank from the cup. The nurse wanted him to get more of it, though, so I had to put the rest in a syringe with the juice, which he wasn't crazy about, but grape juice hides icky flavors pretty darned well.

No big plans for today other than to hang out with Grandma and The Boy. He is very snuggly and sweet.

Friday, May 1, 2009

Enter Grandma

and everything gets better. At least a little bit.

When she arrived, The Boy was asleep. He woke up, they read a cute pop-up book that she brought, and he sat in his chair to eat Rice Krispies and some various fruit snacks. Also from Grandma. And cheese. Which he is excited about currently.

Still don't know exactly why he's feeling crappy but he seems better.

Also, needs blood

The Boy needs blood today, again. That's pretty unusual, and hasn't happened before, that he would need blood this long after his last chemo treatment. That said, his levels were not super a few days ago. Now they are just below the cutoff. Still waiting on the Zofran. The oncologist just stopped in. As usual, The Boy didn't say goodbye to her, because his tendency is to say goodbye to her only when he is going home.

Not Hungry

The Boy just isn't hungry. And that doesn't happen. He did eat about 1/3 of a rice cake with honey and some juice. When his actual breakfast arrived and I got a bit ready for him, he gagged a bit and turned away. He had no interest in yogurt, meaning that the best method of delivering crushed pills is out the window. I asked the nurse to get him some Zofran, because maybe he's just feeling a little nauseous for one reason or another and the Zofran will take that away so that he can eat.

And the nephrologist just sent in another dose of medicine, which I haven't yet tried to give him, because he won't eat, and if I force it, it will come back up.

I wonder if the new BP medicine, Vasotech, is causing him to lose his appetite. He was fine yesterday, though--he took it around lunchtime. Now she wants double the dose, but in the morning. Or the few doses of Pro-Cardia that he had after some high BP's.

Or, if he is getting sick with something else that he picked up while here in the hospital. If that's the case, then I'm going to be REALLY mad. But there's not a thing that I can do about it.

So since there's nothing to be done about any of this except to wait for the Zofran and hope that it works...that's what I'm going to do.