Tuesday, June 30, 2009

Food...it is what it is

This morning, The Boy did something very unusual for him: he didn't eat his breakfast. He did not seem upset or uncomfortable, but he just didn't touch it. He didn't complain when I gave him his Vasotec in two spoons of yogurt, but he was not interested in anything else.

We did give Zofran, just in case.

He drank plenty of juice, though.

Now, he is finishing up a plate of macaroni and cheese. Odd time of day for it, but I asked if he was hungry, and I offered him macaroni, and he was thrilled to eat it. Ate the whole plateful, wants more, but there isn't any more.

Even though he is generally a good eater, we don't feel like we're in a position to insist that he eat what we eat when we serve it. Usually, he does do that anyway, but if he doesn't feel like eating at that moment, we'll offer him another choice or two, and then something else a little while later. I don't think that he takes advantage, so to speak.

About a sentence into this entry, he also had a giant poo, which he even admitted to. I asked him if he made poo and he said "yes" so at least that is progress.

Monday, June 29, 2009

Bust out

No need for blood; hemoglobin was 8, meaning that it went up a bit on its own from Friday. Waiting on Epogen and to see where our Epogen is, for home. If we don't get it, we will come back here Wednesday. Not a big deal.

Also, The Boy's doctor thinks that I dropped a bit and look ready to have a baby. Cool.

Big red, big blue

Waiting on counts for The Boy. It took awhile to get things started. They accessed his port because there is a good chance that he will need blood. I am hoping that the Epogen will start working! Not sure how long it takes to kick in.

Yesterday his blood pressure was low, so I called the nephrologist and his Hydralazine was reduced to twice a day. Always a good thing.

As for myself, I am still very pregnant. No surprise. I am running out of shirts that for; this blue one I have on just barely cuts it. I went across the street for my appointment, and the doctor said that she may or may not see me the following week because I may or may not have the baby before then. I have made a bit of progress. So that's good. We'll see. I can't think of anything that would stand in the way of Logical Mommy liveblog coverage of this event. Or, at the very least, very timely baby photos.

Sunday, June 28, 2009

Barefoot and Pregnant

Now I know where that expression comes from:

It's because when you're really pregnant, your shoes don't fit!

I put on my light slip-on sandals...and they did not slip onto both feet. My right foot is significantly more swollen than my left. I was able to put on my Birkenstocks, on the loosest setting. I think that my sneakers will also still fit. I don't have much longer to go with these giant hippo feet, at least.

Six days to my due date and I'm still thinking that I won't go any earlier than that.

Saturday, June 27, 2009

It hurts...

While singing lullabies to my little guy, snuggled up in our bed, I learned via email that another little one lost the battle with cancer and earned his wings today. He was lying in his parents' bed.

I did all I could to finish singing the song. The Boy is asleep and snuggled up to me. I'm not getting up just yet.

Definitely a little less himself today

The Boy woke up puffy. And early.

The area around his eyes was swollen, which is where we tend to notice it first when he is retaining fluid. He was a bit cranky but not too much. He wandered into the kitchen and asked for juice, which we were able to persuade him to drink in bed while we were half-awake watching Sesame Street. Grandma was still here, thank goodness, to assist with diaper duty. Yes, I said duty.

Anyhow, it has been a long time since we've had to do the 2-hour diaper changes overnight at home, since the past two times post-chemo we've been in the hospital. It's stressful. And I spend most of the night on the easy chair in an attempt to keep chemicals away from pregnant me.

The Boy and Grandma had breakfast while Musical Daddy and I went out. Apparently he ate two eggs! He and Grandma were playing outside when we returned. I took Grandma to the train station and was gone for an hour or so. He and Daddy played and were starting to rest when I returned. The Boy then sought me out and wanted snuggles. We slept on the chair for two hours. It was nice, because I didn't have to worry about what either of them was doing.

After we woke up, we had lunch.

Which came back. Rather forcefully. And he was unhappy for a few minutes beforehand too, so I knew that something was wrong. Following cleanup, he and Daddy rested. He just doesn't seem to be feeling exceptionally well. Even though he did want to play outside again, we can just tell--he isn't as strong because he struggles with the ladder, and he isn't feeling as energized.

It should be interesting to see if the Epogen actually works and The Boy is able to maintain his hemoglobin a little better.


Today, Musical Daddy and I celebrate 5 years of marriage. I certainly expected to make it to this point, although it's been a very interesting journey. And we are stronger for it.

It doesn't seem all that important, as the past 3 days were different "anniversaries" for The Boy. June 24th, last year, was the day that Musical Daddy took him to the pediatrician, who sent them for an ultrasound, and then brought us back to the office to tell us that based on the ultrasound, he suspected Wilms Tumor. We checked into the hospital that evening. June 25th, that morning, The Boy had several tests, including a CT scan, an echocardiogram, a vascular ultrasound and goodness knows what else. That evening, they told us that The Boy had bilateral Wilms Tumor, that the left kidney was completely taken over and that there was tumor on the right side, but that they were not sure of location. June 26th was surgery day.

On June 27th, our anniversary, our friends brought us Kosher chinese food, and I think that my parents (who came in on Wednesday) brought us a cake. We did celebrate and we were happy to be with each other, because we really needed each other. Also that night, they let The Boy nurse for the first time since the surgery. I was so thankful for that, and so was he.

I think that we'll always recognize this time of the year as the beginning of The Boy's ordeal. I am looking forward to (I"YH) The Boy finishing up treatment and getting clean scans, because that will REALLY be something to celebrate.

Friday, June 26, 2009

You only get two shots

So this chemo stay was uneventful. We are just waiting on a repeat CBC, and then we get to go! EDIT: going confirmed. w00t!

BP is still heading in the downward direction, which meant another reduction in Hydralazine. 1 mL? No problem. I wish she'd reduce the Cozaar so that I can give 1/2 tablets...maybe next time.

The big new thing is Epogen. That's the stuff I mentioned that is like Neupogen but for the red cells. Even though his levels appear to be normal, they want to try him on it for a few weeks and see if it makes a difference.

Interruption: puke. Dodge by Mom. He was given his evening BP med in a bit of yogurt and he cooperated just fine...he just wasn't in a good place stomach-wise. I told the nurse that he needed more but if he didn't get it here then he could get it at home. No big deal. And that puke would have happened pretty much regardless of

Anyhow, the Epogen shot is a much larger volume than the Neupogen. It's something like .8 mL, whereas Neupogen is .2 mL. That's a pretty big difference and it seemed to hurt a bit more. But then, he was sleeping and it woke him up...annoying. If it becomes a problem, we'll try putting either ice or EMLA on before giving him the shot. Probably EMLA because he won't stand for ice.

Also, he is getting a Bicarb Citrate medicine. More medicine. 5 mL 3 times a day. Fortunately the Hydralazine isn't the huge quantity that it was before, so we'll just let the new stuff be a part of the Hydralazine regimen.

De-Accessing...and then we get to go! See ya bye!

Thursday, June 25, 2009

But, speaking of lucky:

I am very glad, and very fortunate, that my husband and my mother get along. I was able to leave a bit early and have them in charge of The Boy together, and I felt fairly confident that they'd get along and have fun.

Not to mention, they'd probably talk about shopping and all the great deals they've been getting on stuff.

Just for the record, if you pay $5 for a $20 item that you didn't need in the first place, you aren't saving any money! Silly Daddy. Silly Grandma.

The Boy has been in an absolutely wonderful mood today and was in a similar mood yesterday. Playful, charming, a little impy, and just...not what you expect from a cancer patient. Lucky indeed. I almost wonder if he's just "used to" the actual chemo and that he doesn't let it bother him. Of course, he is still susceptible to bouts of nausea and slight food aversions during the week after, not to mention the drops in his blood levels. Zofran twice a day for the first few days, and once a day a few days after that, seems to stave off most of the nausea and allows him to eat pretty normally.

And so what if he lives on yogurt and rice for a day or two?

BP has been low; the doctor has cut down his Hydralazine. She says that as long as his potassium levels are stable, she wants to keep him on the other two medications to help protect the kidney and keep the protein in the urine down, which is down quite a bit. It was as high as 30 and was at 7 or 8 awhile ago...latest check had it at 2. The correct level should be .2 but we're not there yet. Even so, it always makes me feel better when less medication is needed, even if it is just a slight decrease in dosage. And that's also pretty good that his BP is lower considering that he is on an IV and that tends to complicate things.

I am at home and although I wanted to do...something...around the house, all I've managed to muster up is taking the diapers off the line and washing the laundry from the hospital (diaper covers and a few articles of clothing), along with the last cloth diapers that we had used before leaving for the hospital. I'm not feeling great. Likely not "going into labor" not feeling great, but more like typical third trimester "I don't know where my stomach is and there's a head on my bladder" not feeling great. Moms, you know what I'm talking about.

Wednesday, June 24, 2009

back in the groove...we hope...

This looks to be an easy chemo stay and nothing more. We had a nice two weeks of no hospital. We are REALLY hoping that we kinda get back to the way that we were doing things before, where we stay out of the hospital except when he gets his chemo. We are NOT assuming anything. We are being cautious.

But again, let's hope that it's just a simple chemo stay and we remain out of the hospital for the duration. Until it's my turn to go.

The EPO test (you know, the one for the hormone in the kidney that helps make red blood cells) was normal. The nephrologist figured that it probably would be, considering that his kidney function was still good, but it was certainly worth it to test. She says that the number of transfusions that he has needed is probably related to the chemo. She asked me if he has had more transfusions since the hypertension issues began two months ago, and I told her that it really wasn't that different from what he has had since beginning this chemo protocol. On the other protocol he required one transfusion in October, and he had begun the protocol in July, so it was just the nature of this particular chemo.

He generally requires platelets once or twice during the cycle following Carboplatin. Usually red cells are about every two weeks. So he'll sometimes need them at the end of a chemo treatment and sometimes need them during the cycle in the middle.

Once I have recovered from giving birth, I fully intend to give blood as often as possible. I don't want him getting my blood, because that could jeopardize my ability to give him a kidney later, but I want to know that I am contributing. Also, a friendly reminder to all of you who are healthy enough--give blood. They even give you a cookie.

The Boy does like cookies, but not all of them. Mostly, he enjoys the Trader Joe's "schoolbook" cookies, which are letters and numbers. Anything letters and numbers, he's all about it. Silly boy.

He has been asleep for awhile, with Grandma. Oh how we love Grandma.

For the wait..

Took us a darned long time to get into a room today. The Boy is in for chemo #9. Should be a "simple" three day two night stay.

The room that we did get, however, is prime real estate. There is a separate entranceway with a sink. Two doors needed to enter. The bathroom has a shower right in there, so no need to go down the hall. The layout is different, which is okay. Smaller room space--also okay. There is one more room in this wing with a shower which we have not had since his post-surgery post-ICU stay.

By the way, today is one year from his initial diagnosis, or at least from the day we were first told what could be going on and that we'd be checking in to the hospital.

Of course, we thought we would be long past this by now. That's what everyone thinks about Wilms Tumor...a surgery, a few months of chemo, and all better.

I don't want to hear from someone who doesn't have any idea that we are "lucky" that it is "just" Wilms. Yes, we are lucky that his prognosis is still good in terms of he should survive and will lead a reasonably normal life. We are also lucky that he has been such a happy boy with a good attitude and a good appetite. I guess...we can say it and mean it but it sounds trite from some others.

Leaving soon to pick up Grandma!

Tuesday, June 23, 2009

Even though we are going in tomorrow...

I did not have them leave the port accessed. We could have, which would have made it easier tomorrow...but it was more important that The Boy get to do this tonight:

Notice his coloring--that's AFTER getting red blood cells. It's just what he looks like. Grandma, and me, and The Boy. And Grandpa on Musical Daddy's side too. Pasty pasty pasty.

Yes, chemo

Not only are we clear for chemo, but he will be getting the full dose of Carboplatin. Kidney function is good enough.

Blood pressures have been low recently; possible that some meds could be reduced...?

Hour and a half until the blood is done, and then maybe a flush. Still home in plenty of time to play.

On the subject of Tiny Guy

Ultrasound showed that everything looks fine. He is in the right position. Estimated weight is 8 pounds 4 ounces, so we're in the same ballpark as last time.

Doc wasn't going to do an internal check but I said maybe something might be going on. So she did. Nothing. Shut tight. Didn't get very far.

Musical Daddy has changed his position about early delivery, that it won't be. More like my birthday, which is July 13.

Whatever. The doctor mentioned, just to remind herself, that I had delivered The Boy without anesthesia. Correct. Did not want it; did not need it. Hope for the same--no reason why not. I mean there's always something that could happen but generally people have babies and they should just be able to come out. And then moms should be able to feed them.

Apparently this is a controversial opinion.


We're here, The Boy, Daddy, and me, waiting to get set for a port access. Guessing blood is needed, but we'll see. He looks better today than yesterday, but I think he studied for his blood test by eating spinach.

We will all head across the street to "see" Tiny Guy in there. Then return for blood, if needed.

I am so glad we're both here. Makes the long day easier.

Monday, June 22, 2009

Timing is everything, in a different way

The Boy is definitely into Daddy right now. Good time for it, with Tiny Guy's arrival coming...eventually.

Still not much to tell in that arena. I'm about a week and a half from my due date. I have my last ultrasound tomorrow to check position and guess weight, and perhaps I'll also get an internal exam. Not sure if she'll do it or not--she didn't last time at 38 weeks because she didn't really see a point. And not that I necessarily want one although it is possible that it could get things going. Who knows?

The Boy has another great day today, all told. We went to Musical Daddy's school in the morning. No kids were there; just teachers doing their final things and packing up for the summer. The Boy got to play drums and piano and xylophone and wander around that area of the building. Just a different arena for Boy antics. He also went into the orchestra room a few times...he knows violins but isn't sure about the other string instruments, so he currently calls them all violins. Obviously I will have to work on that with him. He'll play violin, maybe, but not quite yet. Perhaps at the end of the calendar year we'll see. And he could even take it to the hospital. With the size that he'd have, it wouldn't make a bunch of noise.

Anyhow, after that, we returned home, sat around for a bit, he napped, and we had sandwiches for lunch. He was a little whiny, which made me think that perhaps he needs blood. The under-the-eyelid test indicates that my suspicion is correct. His last transfusion was right before we left the hospital two weeks ago, and he's mostly been on an every two week schedule with getting blood. Had he had chemo already, he'd probably have gotten it on the way out, or the next day.

Next was physical therapy. That was fun for him, although he ran out of steam a bit before his time was actually up. We spent most of that time outside on the swingset and running around the yard. She had him going up the ladder and was coaxing him into leading with alternate feet instead of favoring the left. The ladder requires big steps and a lot of pulling with his arms as well as pushing with his legs. It is a great whole body workout! He has developed quite the appreciation for the slide, which he goes down entirely on his own, but on his belly, which is really cute. He can do it sitting up, but he much prefers his own way right now.

Long family nap, then dinner, then hanging around inside while Daddy mowed the lawn.

Then, more playing!! He must have gone up the ladder and down the slide at least 20 times. He still enjoys pushing the ball down the slide, or "catching" the ball as it comes down.

Ice cream, then chat with Grandma and some cousins, then bedtime things. Didn't take him very long at all to settle in.

We do have a pretty decent bedtime routine for him. Whenever we do put him to bed on his own, it should translate well. We do his last dose of Hydralazine followed by a Gummi Bear (it's a calcium supplement but he thinks that it's a big deal), then vitamins and teeth, then pajamas, then into bed (our bed), where I talk about what we did today and what we're going to do tomorrow, and then I sing "Heart of My Heart" and whatever else pops into my head, but "Heart of My Heart" is always first. The best part about this is that there is no TV involved.

We still need to get back into more books, but I'm not yet sure if that needs to be a bedtime thing or if that should be a daytime snuggles thing.

In other news, I definitely have the pregnant hippo feet going on. I didn't notice it at all until after the walk last weekend, and then only occasionally. Since then, my feet get swollen when I'm on them for awhile. My hands are puffy too. I can tell because my wedding band is stuck on as opposed to having the bit of slack that it usually does. My engagement ring was put away a few months ago, and I'll put it back on after the swelling goes away. My blood pressure has still been good although I didn't take it today.

The Boy had two blood pressures taken today. One was really low and the other was high but acceptable for him. I'll have to see how tomorrow's is at the center. I would love to see his blood pressures stay consistent and not be crazy, because that would indicate stable kidney function.

I have packed my hospital bag and affixed a note with the things that go along with it, should I not be the one to get it (i.e. if I am already at the hospital and go into labor, someone else will have to get my stuff for me). I need to take a look at my instructions for taking care of The Boy and make sure that I didn't forget anything. It lists his medication schedule and food suggestions. Uncle P agreed to come down and watch him if we're home when I have to go in to have Tiny Guy, but since he isn't around him every day as we are, he'd need to know more stuff.

So that's about that...will post tomorrow about what our day looks like. Unfortunately, getting blood is an all-day event.

Sunday, June 21, 2009

Being Mom, with Dad, like people do

Perfectly fine weekend. Normal. Ordinary. No major issues.

Yesterday, we didn't do a lot. We had breakfast at home and after hanging around for a bit, we went to CostCo. It's usually a fun trip, where we take our time going up and down the aisles, buying some things for which we have the coupons, and some other stuff that we just think of. We didn't buy an excessive amount this time, which was fortunate. The Boy usually enjoys this trip, alternating between riding in the cart and being carried around, sometimes on Daddy's shoulders which usually leads to big smiles.

I don't think we did much between that and a trip to the mall to return some pants, other than nap and putz around the house.

We are having some issues right now with The Boy wanting to throw stuff. Sometimes down the stairs, but primarily he'll just take something that he is playing with and toss it backwards over his shoulder. No idea why he does that. We'd prefer that he not do it. When he is playing with something like Play-Doh or his easel, and he throws the cans of Play-Doh or throws pieces of chalk, the toy goes away. Same with his letter magnets on the fridge. Most of the time we avoid "behavior problems" by getting involved before they happen. Yesterday, he was a bit more on my nerves than normal, but upon reflection I see that it was really because neither he nor I really wanted to be stuck inside doing nothing all day. Going to indoor playing places isn't much of an option. Museums are iffy but perhaps we could have, with his counts being good. Next time, we might try the library. Point being, I think that a combination of not letting him get too bored and causing toys that are thrown to disappear might be our solution.

I can't even fathom any harsher discipline tactics with him, such as shutting him in his room or spanking him, because it just doesn't make sense in this situation. The child is bored and trying to experiment with objects and you punish him, when he is really too young to remember and learn the lesson anyhow? I think I'm pretty much against the idea of spanking him at all, because it seems like we can get on without doing it. Time-out or shutting him in his room is certainly something that is on the table, but not until he is old enough to understand it, and not unless it is a logical consequence.

So that was yesterday...and then today, Father's Day, was also wonderfully normal. We woke up, and I made breakfast. Then I went out to the supermarket. It is something of a head-clearing experience to go to the supermarket alone. It is a ton of fun to go with The Boy, but it is entirely different alone. Almost peaceful.

The guy at the register had to have been the slowest old bugger I've ever met. Took WAY too long with the other customers and with silly stuff like finding barcodes. And he kept asking me if I needed help and did I want someone to walk me to my car and such. I was polite the first two or three times when I declined. And, when he asked me how I was doing, I said "I'm perfectly healthy, thanks." I did ask him to help me with soda cans, just to make him feel better, which was a mistake. Because then he asked two more times about sending someone out to the car with me. Although he did show some intelligence in placing them in the cart instead of underneath, as I had done originally. I guess I can appreciate that people want to be helpful and polite but frankly, the store was so busy and I didn't want to monopolize anyone's time to do something for me that I can do myself. Pregnancy is not, in and of itself, a disability.

I returned home and fixed The Boy a snack of watermelon, grapes, and blueberries. Watermelon is, of course, a "sometimes" food in terms of potassium content. He ate all the grapes, some of the watermelon, and had no interest in the blueberries. The Boy was also seen web-chatting with Grandma and Aunt L, and then the uncle and cousins out on the other side of the country.

We napped, and then we got up to go to a late lunch with the family.

My intention, several weeks ago, was to secure some time in the afternoon with Musical Daddy's family. Father's Day isn't necessarily a big deal, but I felt like this year, it was really important for Musical Daddy to have his family. No matter where we were. I thought that we'd be in the hospital, or that it was a possibility, so I wanted to secure time with all of the family so that if we were there, we'd have everyone come to us. If not, we'd be somewhere else. And so began the negotiations. Quite a bit of back and forth as to what the plans really were--as is the case with pretty much any group of people trying to do anything. So be it.

We ended up going to a restaurant for a lunch buffet with the family.

We were nervous about it, because we haven't been to a restaurant with The Boy in awhile, and because we didn't know what the food choices would be or how they'd be prepared, or how The Boy would react to people eating things that he couldn't have. We needn't have worried.

The Boy ate pretty much an entire hamburger, half an ear of corn, and watermelon. He was happy as anything and didn't really notice or care about what the rest of us were eating. The hamburgers were just meat cooked on a grill, the corn was plain steamed corn, and it's pretty difficult to screw up watermelon.

I thoroughly enjoyed my meal, although I realized toward the end that I had neglected to try the prime rib. However, I did try several yummy desserts. My favorite is still the little hot fudge sundae that I ate last.

Grandpa got a digital photo frame from us. He will probably have a great time setting it up.

Musical Daddy and his brother were then charged with the task of setting up Grandpa's new TV. Too bad the darned thing was broken.

When we got home, the boys napped again.

The Boy ate a late dinner, as his lunch was normal to large as opposed to...what people normally eat at a buffet. Especially when the desserts are as plentiful as they are. It's just so funny to hear him saying so much of the things that he eats.

Getting him to sleep was a bit of a challenge but not too bad, as he isn't cranky about it. I'd think that he was asleep, and then all of a sudden he'd spring up and say "Dad-DEE!" or just "DEE!" and then we'd have to get settled again.

All in all, it's been nice.

Friday, June 19, 2009

Ain'a That Good News

Item #1: The Boy's ANC was over 10,000 today!

Item #2: Chemo will not start until Wednesday because that's what we said we'd do, and that's what they made time for up in the hospital. However, we can gradually move things back, assuming that counts recover, so that whenever he is ready to go for his next round, he can do it, and we don't have to lose the week just from having started a bit late the last time. Had we known, we would have probably gone in today because he would have been ready. But then, having planned for it, it wouldn't have happened. So we'll get an extra few days of (hopefully) good health and no hospitalization, to just enjoy The Boy and have fun without (as much) worry.

Item #3: The Boy has "graduated" from OT. He doesn't need it anymore! Everything in fine motor skills, speech, cognitive development, and self-care is right on track if not ahead. He will continue with physical therapy for extra work in gross motor skills. It makes sense--all of those things are easy to work on when confined to the hospital. Gross motor skills are trickier because there is nowhere to go.

So that's all the good news. And I can't think of any particularly bad news. Other than the fact that The Boy was finishing up lunch when the occupational therapist came, and he puked up some of his lunch for what seemed like no real reason at all. Maybe he got a bite that just didn't taste right. He was fine afterward and has been drinking his juice. He'll probably be hungry for a snack at some point. He also could use more nap. He was asleep when we arrived home from the center, a little before 11AM, and I put him in bed while we watched The Poetry Show, and he was asleep midway through that. OT was at 12, so I woke him at 11:50 to start lunch. That's enough nap to get through OT but not enough for the whole day. Fortunately, Musical Daddy returns home in about an hour, and family naps are the greatest.

Thursday, June 18, 2009

Round Here

Today The Boy and I went to visit with some people. Wow--people!

There's a nice group of moms that I found online, and most of my contact with them is online because of schedules not lining up, but one of the other moms hosted a playdate this morning and said to come on over because the weather was going to be crappy.

We arrived awhile before the others, so it was just us and the mom and her two daughters. One is close to 5 and the other is 3 or almost there. Not sure on birthdays. David did seem to enjoy playing with the younger girl and was later seen tackling her as she was sitting in this odd rocking chair thing on the ground. She was somewhat bossy but not in an intentionally mean way--there's just a HUGE difference between almost 2 and almost 3. Add that to The Boy's appearance, with no hair, and it is likely that he will be seen as younger than he is until he is old enough to say "I'm not a baby--I'm 2. That's a baby (pointing to his brother)."

Good snacks; compliments to the hostess. Watermelon slices, which The Boy ate with a fork AND used a napkin to wipe his face. Later on, popcorn, which was cooked plain, and The Boy ate it without salt. I had never given him popcorn before; I had heard that it wasn't great to give to younger kids. However, I watched him and he did fine with it, It requires the same sort of vigilance that grape-eating does. I have stopped cutting his grapes, at least when they are small enough, because he is very good at chewing. And with 18 teeth and probably the last 2 baby teeth on the way, I'm not too concerned but it still helps to watch.

There were two other toddlers there who are younger than The Boy. They seemed somewhat less interested in each other.

Of course The Boy gravitated toward the door with the magnets on it and the letters.

And, without much warning, he fell asleep on my lap. It was nice because it gave me a chance to talk with the other moms.

After returning from this visit, The Boy and I got started on lunch and Musical Daddy arrived at home. We tried napping. We sorta dozed while The Boy watched Elmo. I told him that Elmo is probably NOT good for napping. Chilling out, perhaps, but not napping. Because The Boy is interested in what is going on.

I am glad that tonight, he went to sleep to songs sung by Mommy.

Right now the boys are in bed and I am staying up. Partly because I napped for a LONG time this afternoon and partly because this tiny guy in there is VERY active and doesn't particularly want to let me sleep. I feel very round, but not too uncomfortable overall.

Musical Daddy says that he has a feeling that Tiny Guy is going to be born within days. Or at least, that we won't make it to July. I think I'm switching to calling him Tiny Guy as opposed to Baby Bear, since no one needs to be kept in the dark about gender and anyhow, Baby Bear is a totally lame character on Sesame Street. I don't know that I have the same feeling as Musical Daddy although I think that I will not be going late this time. At least I hope not. Last time I just stopped answering the phone at a certain point because the most annoying thing is to have someone call you asking "so, did you have the baby yet?" and you're walking around 41 weeks pregnant.

I might have mentioned it already but The Boy has been very into my belly recently and always touching it, saying "baby" and giving occasional kisses.

He is SO sweet. I hope that he stays that way. I'm sure it won't be perfect in terms of The Boy's love for his little brother, but I'm hoping that the overall vibe will be a good one.

Wednesday, June 17, 2009

Heart of my Heart (or, something else that isn't inherently sad)

It's been a few days since I've posted, really because there is not an incredible amount to report. There are always things going on, but honestly, I just didn't feel motivated to write. Frequently with us, no news is good news. Kind of.

Monday's appointment, I was thinking that perhaps The Boy would need platelets, as he hadn't had those in awhile. Not only did he not need anything, but his ANC was in the 9000's! So my theory about him being on the way up over the weekend was very true. He's lower now, because he is off the Neupogen, but having reached that level, he probably still has at least some fight to him in the white blood cell department.

The Boy had his first physical therapy session in almost two months. The therapist got to see a lot of things. She also got to see him throw a nice little fit. Which wasn't really that bad, but for him it was exceptional because he isn't so much a fit thrower. He just didn't wanna. Whatever it was, he didn't wanna. She went down a checklist, asking me if he was doing certain things, and I answered her and tried to get him to do them as much as he could do.

He is not running yet, and he probably should be. His walking is okay, but sometimes he has a wider stance and his feet turn out some. It is especially obvious outside. She says that this is from being in the hospital, and she recommends letting him out a lot to walk over the uneven surfaces and even create obstacles like that for him at home.

He is definitely left-footed. And most likely right-handed. Makes for clumsiness.

Yesterday we hit both grocery stores. Today we went to Target and had lunch with Musical Daddy at his school. The Boy got to play around in the band room, which he loves.

Now, as for the title of this entry--there is a song entitled "Story of the Rose," and the refrain is often sung as a stand-alone, called "Heart of My Heart." We have been singing this song to The Boy since he was born. This one and several others which, if you know barbershop,are "polecats" mostly and several other barbershop standards. When I run out of those, I tap into my musical theater knowledge. But singing The Boy to sleep (which I try to do in lieu of just turning on the TV) always begins with "Heart of My Heart."

Remember my post about Scrubs in which I discuss some things that are not inherently sad in the same way that they do on the show? I suppose this is another one of those instances. I sang this song for The Boy and for some reason, every single word seemed to stick to me. With every breath I took it became harder even to get the words out at all. It seems to be a fairly generic song about love, but taken in the "right" context in the right mood, by someone who is pregnant and...well I don't really find myself to be that emotionally effected just by virtue of my being pregnant.

"Heart of my heart, I love you/Life would be naught without you/light of my life, my darling/I love you, I love you/I can forget you never/From you I ne'er can sever/Say you'll be mine forever/I love you."

If you think about it enough...it does apply.

I probably have more to say, but I'm tired.

Sunday, June 14, 2009

Great weekend! And, biggest team!

Despite the fact that The Boy's white count wasn't great, we had a wonderful weekend! My speculation is that his ANC is closer to reasonable now than it was on Friday based on the differential. Basically, if he has a lot of monocytes and not as much of anything else, his ANC is low but on its way up, because the monocytes are what grow into mature white cells that can actually do something. Not that the overall white count was good anyway, but, for example, one time his white count was 3.5 and his ANC was in the 3000's, which let me to believe that he'd be good for that day and maybe the next but crappy for the few days after that.

Anyhow, medical blabbering aside, the Walk-A-Thon was yesterday and we had a great time! I made The Boy a shirt that says, "My counts are low--blow kisses!" to hopefully discourage people from touching him. I was less worried about having him outside, although we were still very diligent about wiping his hands (which we usually are, regardless of his counts). We arrived early so that we could make an appearance on TV (and when I find the video somewhere, I'll post the link). The Boy had a fantastic time just romping around, being cute, and socializing.

Musical Daddy ran the 5K in the morning and felt good about how he ran. We amassed our team over the course of the morning. We won 1st prize for the largest team (even though it was difficult to tell who was actually there). The walk itself was about a mile and a half and was pouring rain after we finished...probably it would have been more of an "a-thon" had the weather not been lousy. It was great in the morning, though.

We had all the grandparents, as well as Aunt W and a few cousins. It was great to have my parents here. Before they and my sister left, I asked for us to straighten up in the house. With 5 adults doing a bit of work, it took us each less than 10 minutes. Always a good decision, when you have a bunch of people in one place, to ask everyone to help.

The Boy has been a joy and a treasure all weekend. As if we're surprised. But we're lucky.

Not much more to talk about, and I'd like to run and get some food. MMMMMM---sandwiches.

Friday, June 12, 2009

Easy Exit

We went to the treatment center for counts and actually didn't need anything. His white counts are low but not ridiculous (don't know the ANC yet; he could be close to 1000 or could be much lower). Hemoglobin was 9, and platelets were 45,000. He was a little more tired and grumpy, probably because we woke him up a bit earlier. But he was still pleasant.

We saw some of our "new friends" at the center today. One was a four-year-old with his mom (who is also pregnant; found out about her son's leukemia after finding out about being pregnant). The other is a thirteen-year-old who was diagnosed at some point during The Boy's first long hospital stay. It's pretty different for all of us mothers because of the varied ages of our children. As horrible as it is for us, it's really another routine for The Boy and us, and he's been doing this for almost a year. A four-year-old can understand that he is sick and may even wonder why he has to be punished with all of the icky medicine and hospitalizations. A thirteen-year-old, on the other hand, is generally pretty knowledgeable, and already pretty emotional even without illness...so you add in cancer, which can kill you, and it's just a miserable scene. Someone The Boy's age doesn't really know any differently and doesn't care that he feels crappy--he is busy and has things to do, and can't be bothered to feel sick. Not so with patients who are old enough to know better (with the exception of my mother; thankfully The Boy has taken after her in terms of dealing with chemo side effects).

While we were both in the hospital, we gave this girl a gift card, to help perk her up a bit.

It's a drag that The Boy will have a low white count tomorrow for the walk. We will still take him out but we will just be careful. It is a lot easier, and I feel a lot better, with him being outdoors with low counts as opposed to stuck in enclosed spaces.

We are going to be part of an interview tomorrow morning! They called us and asked us, mostly because The Boy is so cute and also because our team is doing so well. So we have to go for that, and then Musical Daddy does the run at 9:30. The ribbon-cutting for the walk is a bit after 10:30, and then the walk starts at 11 and goes until...?? I'm thinking that once the walk really gets underway and they've had a decent stroll, I'll send The Boy home with Grandma. She doesn't care for the outside anyway.

Thursday, June 11, 2009

Breastfeeding: so who is it for, anyway?

This topic came up a few days ago while at the hospital, and it amazes me the types of things that come out of people's mouths with regards to breastfeeding and children's nutrition in general. I should preface this whole discussion by saying that on the whole, I have had a lot of support in nursing The Boy even as long as I did. Even Musical Daddy's local family, who are less accustomed to it (it's much more normal in my family; I remember seeing my sisters and cousins being breastfed), gave me very little trouble about it. I say "local" because the niece and nephews on the West Coast were all breastfed, and for a properly long time too.

One of the ones that really gets me is "He's a year old now--he shouldn't be nursing; he should have cow's milk in a cup." Um...okay...why is it that the milk that the human mother makes is all of a sudden about as good as Kool-Aid, and milk of another species is the ultimate in nutrition? Not going to get into whether cow's milk is really good for us in the first place, but just think about it--doesn't that sound ridiculous? At The Boy's 1 year appointment at the pediatrician, the doctor said that he could start drinking whole milk now. My mom and I had a good laugh about that. Was I skimming my milk before without knowing it?

Another one is "they're done once they get teeth." One of my blog buddies has a son who is very advanced in the teeth department. As in, he was maybe 3 months old when he got his first two teeth. Why in the world would you interrupt an otherwise functional nursing relationship when you could just as easily teach the kid not to bite? Biting means that milk isn't coming out. There's no possible way that the baby could be chewing and still eating. So likely the baby is playing around. You find a way to fix it.

But the actual conversation in question began because I mentioned something about not liking to see typical kids who are 4 or 5 years old walking around with pacifiers and taking them out to talk or just talking with them in their mouths. I forget how that topic came up. The nurse who was taking care of The Boy said that she sometimes sees kids that age in the hospital who will interrupt their mother and lift her shirt and start nursing. I told her that I was surprised that she sees that, considering that so few people continue breastfeeding. Not often, she says, but she has seen it. I told her quite clearly that I have no problem with kids that age breastfeeding but at some point, the child needs to learn some manners.

She said at that point, "well who is it for anyway?" in reference to a child who is almost school-aged still nursing. I told her that you cannot force a child to breastfeed, and the conversation tapered off at that point because she had to go do something else.

I wasn't upset with her about this--after all, these are pretty typical attitudes toward breastfeeding, especially breastfeeding a child past 6 months or 1 year. It did make me think, though, about the nursing relationship post-infancy.

Mothers of breastfeeding children will tell you that there's really not much in the way of physical sensation in the breasts/nipples after awhile, so it's certainly not some sort of sexual thing as some might imply. As for other reasons that it would be "for the mother," I might buy it if someone said that a mother is trying to keep the child a baby for as long as possible. MIGHT. Because you can't force a child to nurse. They just won't do it. They have to be physically involved. Perhaps if the mother doesn't enforce rules on weaning by a certain age, she is allowing the child to remain a baby. Perhaps. But if you know little kids, you know that they get very busy and have no interest in staying babies forever. They may regress temporarily with the birth of a new sibling until they realize that being a bigger kid has more perks and privileges.

One of the other phrases associated with stopping breastfeeding is "when they're old enough to ask for it, they're too old." What does that mean, really? They ask for it when they are born. They ask for it when they cry or snuggle up in a certain way. You can teach a 5-month-old to sign for milk. Some children talk at 9 months; others say nothing until well after their first birthday. Should we punish a child for talking by taking away her milk? Of course not. Another very wise mother said, "When they're old enough to ask for it, it means that they have to ask for it!" I don't necessarily envision myself nursing a 4-year-old but if I were, that child would NOT have an open-door policy with my nursing bras. I would imagine that at that age, it's a once or twice a day thing, and any other times, the child would have to ask. And sometimes wait. It's not the same as with an infant, where they don't understand the concept of waiting.

A mother can't force a child to nurse. It's impossible. But she can be more or less receptive to her little nursling at different times. A child left to his/her own devices will generally stop nursing as life gets busier. Sometimes the child will check in again every so often, but generally the mother needs to do very little to encourage weaning if she waits until the right age.

Let's just go with the World Health Organization's recommendation that children be breastfed for 2 years. It makes plenty of sense to me. You begin the process of introducing food at 6 months (and some children might not even be ready and might want to wait longer) through baby-led weaning. Let them choose how much they want to eat and learn to handle real food right away. If they are still nursing as much as they need to, it won't matter how much food they are taking in. You let them take their time switching over from milk to other food, knowing that they're covered nutritionally, and at some point around that second birthday, give or take some time, the child is eating real-people food. Most or all of the teeth have come in and the child understands how to navigate a meal. Some of the myths associated with introducing other foods or starting on formula at a certain point...well, let's just say that money talks and there is very little money in breastmilk.

So anything around that two year mark should be considered normal, full-term breastfeeding. I know that many find that strange, but it means that "cow's milk from a cup" becomes unnecessary. Going much beyond that into the territory of "extended" breastfeeding is a decision to be made by mom and child. And still not anyone's place to criticize, in terms of how long a child chooses to nurse. Furthermore, it is entirely the mother's prerogative when she would like to honor her child's request and when she would prefer that he wait. Children do far worse things than nurse too long...but again, if he is old enough to ask, he should ask and not just take.

And truthfully, if a child is four or five and still nursing, and it is mostly for comfort, where else would that child need comfort more than in the hospital??!!

Wednesday, June 10, 2009

just another day

What a day. In a good way.

The Boy and I slept in until 8:30. We barely noticed Musical Daddy leaving.

We got out of bed and got ready for breakfast. The Boy took his liquid Hydralazine pretty well and his Vasotec mixed into his yogurt with no issue. He ate a wonderful breakfast of yogurt, shredded wheat, and an egg. I had made myself a cheese omelet out of three eggs and he ate about 1/3 of it, mostly the parts without the cheese. And some cranberry juice.

To do: find some low-sodium cheese. Do they make it? It isn't a big deal because he can have smaller servings of cheese but it would be that much better if I could also find a low-sodium version.

Off the list: no-salt ketchup. They add a salt substitute that has potassium in it.

After breakfast, we showered and went to the pharmacy to drop off his new prescription for Hydralazine. The old one was 3 mg/1 mL. This one is 10 mg/1 mL. His dose is 20 mg. Why in the world didn't she write it this way in the first place? He was initially put on 15 mg, which would have been 1.5 mL. Whatever. He had two doses of the old concoction today, and his last dose will be with the new stuff. We'll see how well that goes. Should be easier, I'd think.

When we got home, we rested a bit and watched some TV. I took his BP, which was fine. I thought that perhaps a nap was in our future, so we didn't go back out to run the errands that we needed to run (go to the bank, pick up his other prescription for Zofran, buy some cleaning stuff for Musical Daddy). We had lunch--macaroni and cheese, adding an extra cup of plain noodles to stretch it out and make it less of a sodium issue. And black beans, out of the can but rinsed well. That's what he was into. Fine by me.

After lunch I thought once again that he might want to nap, in the chair, as we tend to do when we're home (as if we really remember what that's like). He was back and forth between wanting to snuggle in the chair and wanting to get down and play with his toys that he missed so much. I think it's fun that he has certain toys in the hospital and then certain toys at home.

For part of the day, The Boy was wearing his Happy Heinys "training pants" which are still cloth pocket diapers but can be pulled up and down pretty easily. Like Pull-Ups except a bit less of a gimmick to keep you buying more and more diapers and creating more and more garbage (not that I have a leg to stand on in that regard with the amount of time that The Boy has spent in disposables, being in the hospital). I bought them because I figured I had to buy more diapers anyway and they might be fun. Even the size "extra small" that I got is still a little big on him because he has such a skinny little bum. He does get the concept, kind of, of pulling up his pants, but he isn't quite there yet. But anyhow, it was funny to see him sitting on the floor playing, with his pants and "underpants" a bit too big and falling down a bit, resulting in baby plumber's crack.

Anyhow, it's dinner time so I'll write more later.

Tuesday, June 9, 2009

Last item:

One hour of antibiotic. Not here yet. The Boy is asleep. All that Benadryl will do that.

Pretty much all of our stuff is gone-- Musical Daddy took it with him when he went to rehearsal.

Unless something happens, we will be home at 9 or so.

White count was pretty low but not frighteningly so. Looks to be, possibly, on the way down. We will stay home and take it easy for the next few days. Friday we check counts again.

The clock, it ticks

Again, timing is everything.

The lab rejected the sample for the CBC. Too much. Neither the nurse nor I had ever heard of such a thing. But that's what they said. The Boy was getting IV antibiotics, and we had to wait until they were done.

Now, we are still waiting for the blood, and it will be over four hours from when they give his premeds for blood until we get to leave.

I also wonder...yesterday's hemoglobin was 7.7 and today's 6.9. They saw that it was low and based on when his chemo was, they should have expected it to keep dropping. Anything under 8 usually means transfusion. WHY not order it yesterday?

We just got a new "neighbor." Another screamer. Not sure if I mentioned the child throwing fits down the hall. Usually not for much reason either. In this case, closing the door will do no good, because we share a wall.

If we aren't out by 7, I will start pitching fits that put these to shame. Not really. But boy do I want to.

Timing vent #48485369074288327

Benadryl given, boy getting sleepy. Time for medicine. But he was asleep. Woke him up and he took his medicine like a good boy. He also had an IV medicine on a pump that was started.


He did not go back to sleep. Then the housekeeper came. She was talking to him, even though I would have preferred for her to leave him alone so he could sleep. It wasn't the usual person. He wanted to play, on his mat, but we had to wait until cleaning was finished.

When she finished and we tried to get down to play, he was stuck. I could have gotten him free (IV pole, syringe pump, and cords plugged in for each), but I decided that he really needed to rest. Me too. Then I put on Elmo. I'm a bad person.

Nothing to be done about any of that. Just happens. Par for the course in the hospital.

Still on track to leave around 5.

Before we go

The Boy could use blood again today. His hemoglobin was 7.7 at yesterday's CBC. They didn't mention it yesterday. Grumble.

He has two more doses of antibiotic as well.

Hopefully they will get the blood done soon. I would much rather that they do it while we are already here than have to come back tomorrow.

I think that we'll be back on Friday for counts. Hoping for good ones before the walk.

No CT scan for awhile. They figured that he'd be ok without the extra bit of radiation especially since he had an X-ray a few days ago.

So we wait. You know, for a change.

Sunday, June 7, 2009

He's ready to leave

Not that he gets to, but he is SO himself today. This morning he wasn't that hungry for breakfast, but beyond that, he was just fine. He looks like himself again and is off the Lasix because his weight seems to be back to normal.

He ate lunch and then had more lunch later on.

The nephrologist put him back on Vasotec, 1 tablet (crushed, in something or other) a day. His potassium is fine, so she wants him on this and the Cozaar to combat the protein in the urine.

His BP was REALLY low, so I had the nurse retake it. I should have just left it that way because then maybe they'd lower the dose on the Hydralazine right away, but I did ask for it to be taken again. It was 78/45. Then when she retook it, it was about 102/61. Still lower than it has been. It is possible that they might lower the dose on the Hydralazine anyway. Which is fine by me. I'd just as soon only have to give 5 mL because that's the syringe size I have at home. I will, of course, do what the doctor says for The Boy.

The Boy had an echocardiogram, ordered by the nephrologist, to check his heart. He has had it done before, and he was good.

By the way, none of this is in chronological order. Too bad.

Last night I made arrangements for a family friend (actually, Aunt W's friend from college) to come and watch The Boy so that I could go to Musical Daddy's barbershop show, or at least some of it. It worked out very well. Our friend is a wonderful person who checks up on The Boy, and prays for him, and comes to visit from time to time, when he is in the area. We are lucky to have him in our lives. I left at 1:30 and arrived back a bit before 4. They played. They watched Elmo. And when he ate, I guess The Boy got jealous and wanted to eat too.

The Boy is asleep now; he got Benadryl before his Vancomycin, and his morning nap was a bit on the early side. Thankfully, we got the Vasotec, in yogurt, before he fell asleep. I hope he saves some of this napping and snuggling for Daddy when he gets here.

Saturday, June 6, 2009

Some rest for the weary

I am at home; when I left, things were much better.

The Boy has had all of the medicine that he is supposed to have, as well as a serving of Rice Krispies. He was hungry around 9, and we were hoping that he'd eat some yogurt. Nope--waved it away. But I got out the Rice Krispies and boy, was he excited!!!

He ate them with his hands. In bed. Rice should really be eaten with a spoon. But who cares--he was happy.

He looks good. Still a bit puffy, but his eyes are wide and bright, and his cheeks look good, and his mouth looks perfect. And he is handsome.

Chest X-ray showed a little something going on that they attribute to the excess water retention. The solution? More Lasix more often and we'll be watching out for his breathing.

His most recent blood pressure was also acceptable.

No word yet on the poo sample, although the oncologist (who was in the building rather late) didn't seem excessively concerned. She said that it was one of those days where everyone was having issues, which was why she was around so late. The Boy likes her and is usually cute for her. She has a little girl who is a bit younger than The Boy and is also expecting another, not long after Baby Bear. The other oncologist, who has school-aged kids and is a sci-fi fan, sometimes gets to see the cute stuff from The Boy, but he gives her the cold shoulder unless she is letting him leave. He will not say goodbye to her unless it's "Bye, doc, I'm going home!"

Tomorrow: please come visit. Long and lonely day in which everyone else is going to the Dapper Dans concert (2PM James Caldwell High School--if you end up going there instead of visiting me and The Boy, I won't be too sad but you should do one or the other).

Am I allowed?

It is dramatic here. Not like TV medical drama, but we are definitely not at ease, at all.

Is it too much for me to ask for The Boy to be cut a break?

His BP was high. He got ProCardia. It doesn't seem to have worked. His poo is still red-tinted. He threw up after taking his Cozaar despite the fact that he seemed to take it well. Actually, he threw up after trying a piece of candy that was, ironically, supposed to be a reward. Let's see...I think that's it for now. Oh, and he got Neupogen. I gave the shot.

He is all about Mommy right now. We are watching Pooh.

I am very worried. And very tired.

And very doubtful that he will be attending the walk, because we are just never getting out of here.

Playing with...water

I wish that they would either wait to do pee tests until he isn't toxic from chemo or just do a better job of collecting so that there are no dangerous leaks.

By the way, when I put a bag on him last week it did not leak.

But it did today. During lunch. Redo. On the bed. Redo. The nurse put it on again thinking he'd stay in bed. No, he wanted to play. I closed the diaper and put him on the mat. Then there was a puddle.

Remember that, being pregnant, I am REALLY supposed to be careful about toxic pee. So I called for help. The nurse was...clumsy...about her approach and didn't seem all that concerned about my exposure. She wiped the mat but didn't pick him up and take care of the diaper right after so I had to redo everything once she finally did.

His poo is still reddish. Still suspecting the jello but a doctor will check it out.

Maybe next time I will be in charge of bags. Oh, and he also gets Neupogen today. I get why a few of the people who care for The Boy have said I should be a nurse. I'm just not that interested. Although it is helpful to know all of this stuff.

Other things: temp is fine, BP is high. They decreased the fluids and hopefully that will help. He also got Lasix. His pee was completely clear. The nephrologist says that the protein in the urine has been fluctuating and she wants to check it.

She would like him to be on Cozaar and Vasotec because they help with the protein spilling...but she doesn't want the potassium to go too high. Hard to tell which way things will go.

I'm glad he looks better, at least. He is happy and playing.

Red scare

Grandma and B left this morning. It was beyond amazing to have them--Grandma for her work with The Boy and B for making the house so nice. It feels so good to walk into a clean house. When the house is already clean, it is easy to maintain and less overwhelming to do little stuff.

When I changed The Boy this morning, his poo was tinted with red. I didn't remember him having eaten anything red, and many red foods are not permitted on his diet anyway. I called for the nurse because, of course, I was worried. Red poo is generally bad. I called Daddy, who didn't remember giving him red food. Then I called Grandma.

Red jello.

He got Lasix again last night. He probably will need it today, because he is REALLY puffy again. Not quite like before but still pretty bad.

Today we are going to a party. Instead of going as a family, we will go in shifts. Musical Daddy will go first. He should be back here around 3. I'll go at that point and return to the hospital, to spend the evening with my family.

Walk next weekend! Don't forget!

Friday, June 5, 2009

what do you need?

I forgot about this one...was pretty funny.

I called my mother this morning to ask if she needed anything or if The Boy needed anything. She told me what she wanted me to bring, and then she asked The Boy, "What do you need?"

His response?



Better...and another mystery

I'll try to do this quickly because I really want to do some stuff in the house.

The Boy looks better today. The swelling has gone down and since he is constantly being monitor for hydration level (specific gravity), he'll be safe for chemo. Such as it is. He ate breakfast and took his medicines just fine.

Here's the new mystery: there is something in the kidney that helps to regulate the production of red blood cells. Usually, oncologists and nephrologists don't think to check levels on this unless there is any indication that the kidney is functioning poorly. The Boy's kidney function is still pretty good, based on his last creatinine clearance (you know, the 24 hour pee-bag). But even with infection as a factor, he has needed to be transfused quite a bit more often. And his red cells drop in a hurry when he is sick.

So they are doing a blood test (not a big deal, just take it out of the port...you know...) to check levels of erythropoietin, which is the protein hormone in question. EPO is its abbreviation.

They actually make an Epo-gen shot, like Neupogen. Not sure how often it is given. Neupogen is actually easier in some ways than the oral meds. I give the Neupogen very quickly and it's done, and he gets over it very quickly. Sometimes he'll pitch a fit for several minutes after an oral med he doesn't like. Or just puke up everything.

We'll see. But it actually feels good to know that they are investigating a specific problem that has an answer.

Thursday, June 4, 2009

As far as evenings go, we've had better

I spent today at home with B, my mother's housekeeper, who is a wonderful person and has taken care of our family for over 20 years. She did a lot of cleaning, which prompted me to do some organizing and help with cleaning as well. Since our house isn't a total disaster, we did a bit more than half of what needed to be done and left some for tomorrow.

We had a later breakfast and worked through what would have otherwise been lunchtime. We went to the hospital around 3, as B hadn't seen The Boy in over a year. He had just had a giant poo and everyone arrived at that time, so it was rather convenient. Beyond that, he was very playful and fun at that time. My aunt also stopped by, and I accompanied her to the grocery store. When I returned, The Boy was in less of a happy mood. Not long after that, they brought his Cozaar, and then the fun started.

The Cozaar was previously given as a very small pill, which we would give in yogurt or something along those lines. Precisely, it was half a pill. Then the nephrologist upped the dose a little bit, because of some increased protein in the urine. Except she didn't raise the dose to anything that is easy to break up. Yesterday's nurse, after seeing him complain about the compounded syrup medicine that they sent in place of a pill, said that she'd pass along the word that we'd much prefer a pill, and that she would mix it a certain way in juice so that she could measure it the right way and, furthermore, we'd have the rest of the pill as extra in case he spit it out.

No one got the message. The syrup was given in little increments the same way that his Hydralazine is given. Not even halfway through, the puking started. No dice on the Cozaar syrup.

He was agitated. He was sad. He is clearly uncomfortable. His blood pressure was good for most of today but a bit higher this evening. He has been puffy for days. He is also getting blood (red cells) today, which has never happened that he'd get anything in the middle of chemo. He still has one more chemo dose to go.

I didn't realize exactly how much fluid he is retaining. It's frightening. A decent weight on him, before this stay, is 11.2 kilograms (which is 24.6 pounds). He has been weighed a few times (and is to be weighed every day for now) and he's at 12.6 kilos. 27.7 pounds. Ladies and gentlemen, my son has three pounds of extra water in his body. Fortunately, they have given him Lasix. He got it before getting blood and will get it again after. Lasix is a diuretic. So he'll be peeing extra for awhile.

Grandma just called--he is very settled and relaxed. His breathing is better too. He had something going on where he was grunting a bit, and not comfortable. She also said that he looks better.

He had a few instances of blood in his urine. Not anything visible to us, but they test every time--that's what the cotton balls are for. His most recent urine test did not have blood in it. So that's good news too.

We are waiting to see if one of the pediatricians on the floor will order an abdominal X-ray. Lungs are clear, thankfully, as sometimes they will get "wet" from retaining water.

I guess it was just a very stressful afternoon and evening. The social worker from Chai Lifeline also stopped by. She's very nice. The whole organization is wonderful.

It's a weird balance, as I said in my last post, with the fluids and the swelling versus the potential damage from this chemo. I think that they decided that the stress from the swelling was just too much for him, so they are giving him the diuretics awhile after the chemo is done, rather than risk him being dehydrated before getting it. Hopefully he'll look a little less like a Sumo wrestler tomorrow. Poor guy.

We still love him so much and just want him to be well. Still hoping for no more complications. He's a sweetie boy.

Wednesday, June 3, 2009

The balance

This chemo needs fluids, or it is (more) dangerous. The fluids are making The Boy puffy. Usually he doesn't get puffy during chemo even though he receives all that fluid, but this time he still is. He looks like a Sumo wrestler. He does get puffy when getting fluids and not chemo. He has gained a lot of weight due to this fluid--it's the kidney. A delicate balance--bloating vs damage. We're stuck with bloating.

Also, more on diet: I asked the dietitian to look up some foods for potassium information. Avocados are out for sure. Black beans, however, are okay as a small portion item provided that I soak them, if they are canned. Once I use up the cans, I will probably buy them dried and boil them myself. Good news, though, that his whole grain tortillas are fine.

He ate very well today. Thankfully, he doesn't get that chemo affects appetite. Fine by us--keep him healthy and strong.

Tuesday, June 2, 2009

Meat! Meat!

The Boy ate Grandma's roast beef. I might have to get more because once she gets back, The Boy might have eaten it all. Lost appetite?Not this guy.

So tell me...

Is this our life for the next year and a half?

The oncologist was just here; she says no. She confirmed that this is just a streak of bad luck. So we'll get a break eventually.

How long are we here? Ten days from the negative culture. Which was Sunday. That's long. Estimated departure: Tuesday. Not today, obviously. So we need to keep him healthy from then until the walk, on June 13. Oh yeah, and avoid the C-diff. Must avoid the C-diff.

He is well today, reasonably. He was puffy this morning when I arrived.

Daddy had a wonderful concert yesterday. VERY impressive, all groups. It's amazing what happens when your program is treated well. Ours is, where I would otherwise still be working. Band/orchestra are not in the schedule until 7th grade where I work because 6th grade is still elementary there (I didn't get to hear the orchestra at his school; maybe I can go to that concert on Thursday), so there is a difference in what he can accomplish.

There is a huge difference between 7th and 8th grade, in both schools. It's when they really get serious and also when they seem to get a better handle on their hormonal behavior :).

By the time I go back to work, "my" kids will be in 7th and 8th grade. And the current 7th and 8th graders, who are VERY wonderful students and very special to me, will be in high school. Of course, I am where I need to be right now--with my baby. And soon, my babies.

Nothing new with Baby Bear. My pregnancy has been, thankfully, quite uneventful. I have had a similarly easy time as I did with The Boy. My weight gain has been about the same, too. I crossed 200 pounds at the same time, I think. Group B strep test next time. Hope it is negative, because I don't like antibiotics. I had them with The Boy. No issues then; I just don't like them.

So we'll waste some more time here.

If you are free, please visit. Don't worry about "bothering" us; just do it. Right now at this very moment, that is what we need.

Getting from there to here

I'm at home right now; going to get dressed and leave in a bit, but since I didn't leave early, I'd rather not sit through the work and school traffic.

Sunday was a nice day. I arrived at the hospital and The Boy was in a decent mood. We played, we chilled, and then Grandma and I went out once Musical Daddy arrived back from singing. We had a lovely lunch at an Italian place in the mall, did some shopping, and came back with some cute stuff for The Boy. And some for me too. We didn't get Musical Daddy anything even though we did consider it because we didn't want him to feel left out. He had to go out and sing again for a few hours; when he came back, he and I went to the diner for dinner.

Neither of us was all that hungry, so we each had a little breakfast instead.

Yesterday I got my hair cut. Nothing special--just a trim since I hadn't had one since before Passover and wasn't sure when I'd get one next. I also went to the dollar store and got some little silly things for The Boy and some socks for Grandma.

Grandma has begun the practice of giving The Boy a present once he has taken his Hydralazine. He is better at it than he's been, but he still makes such a scene like he is being tortured. We sometimes offer it to him to take voluntarily, but he pretty much always wastes it by spitting, so we don't bother--it's just forcing and it's awful but he needs the medicine. It really hasn't been that long that he's been on it, and I am hoping that he becomes accustomed to it so that we don't have to torture him. Seriously--giving an injection of Neupogen is actually easier, as I might have said.

They have changed The Boy's diet orders. They have also made the decision to send him the renal diet menu instead of the regular kid's menu. This is actually better, in my opinion, because The Boy doesn't eat the kid stuff anyway. Also, they take care of making sure that he sticks to his diet. We do have plenty of food that we brought that is compatible with his diet, however.

Yesterday's eating pattern was kind of funny for him, especially since lunch was late and dinner was on time. He woke up late and had breakfast--yogurt and shredded wheat. Didn't want his eggs today. He was hungry again when lunch was supposed to arrive but it hadn't yet. More yogurt and shredded wheat. After his nap, it was about 3:45 and he woke up hungry. He ate his lunch of chicken and rice. Dinner arrived at 5:30 and he wasn't interested in it because he had just eaten! Then a bit later in the evening, he had a snack of blue corn chips (unsalted of course), unsalted pretzels, and sour cream.

He's not an exceptionally picky eater, but he does get particular about some things. We can go anywhere and find something that he will eat (with the renal diet, we have to be sure we find things that he CAN eat). He sounds like a picky eater because he doesn't like a lot of the foods that first come to mind with kids. Doesn't like chicken fingers and french fries (can't have them anyway). Doesn't like cookies and cake. Only likes a few kinds of ice cream and vanilla isn't one of them. Not big into veggies right now (he and many other children). I've also noticed that when he is more hungry, he is more likely to eat a wider variety. And then he starts to like some other foods again. When he is at a point in the chemo cycle where he isn't hungry, we try to stick with the simple stuff.

To really simplify his diet instructions, I turn to Larry the Cable Guy (I think he was the one who said it; might have been Jeff Foxworthy). He needs to avoid 'taters, 'maters, and 'nanners.

Monday, June 1, 2009

Start yer engines

Chemo will be starting this afternoon sometime. His most recent culture came back clear, and his infection is under control.

Blood pressure is okay, not super, but fine.

He is okay overall although he is mostly subsisting on yogurt and shredded wheat.

I am glad that chemo will be going on at the same time as the antibiotic (and if the doctor says that it's fine to do that, I'll trust her) because it means that we won't have as much "wasted" time here. Since we'll have to do the antibiotics regardless, at least we'll get the chemo out of the way too.

I don't know, then, when the next chemo will be.