Tuesday, December 30, 2008

Ice!

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

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

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

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

A man who knows what he wants

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

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

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

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

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

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

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

Must change gross laundry. Later, kids.

Monday, December 29, 2008

Kinda okay...

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

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

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

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

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

Off we go...

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

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

Saturday, December 27, 2008

Just a tiny scare (we hope)

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

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

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

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

Silly stuff

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

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

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

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

Thursday, December 25, 2008

Merry Jingly

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

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

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

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

Hollow Leg and Yule Log

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

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

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

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

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

Mi Casa

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

The Boy was SO happy to be home.

Wednesday, December 24, 2008

Marching Orders

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

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

Can't Hardly Wait, or something

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

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

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

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

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

We are NOT going home yet.

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

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

Everything else during this visit was fine.

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

Tuesday, December 23, 2008

Blankie is his name!

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

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

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

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

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

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

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

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

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

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

Saturday, December 20, 2008

Forced Reprieve

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

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

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

Friday, December 19, 2008

All Safe and Sound

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

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

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

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

Time keeps on slippin'...

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

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

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

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

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

Let's get this going

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

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

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

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

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

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

Isn't It Grand

WAY too long between entries.

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

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

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

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

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

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

Sunday, December 14, 2008

I've figured it out. Maybe.

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

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

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

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

Friday, December 12, 2008

Great Day

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

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

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

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

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

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

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

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

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

Crazy, right? A party at the hospital?

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

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

He also put several stickers on his head.

Thursday, December 11, 2008

Little Stinker

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

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

I love this guy. He's cute.

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

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

Wednesday, December 10, 2008

Home again

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

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

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

Tuesday, December 9, 2008

Unpredictable, indeed

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

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

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

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

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

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

But, alas, it was not to be.

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

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

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

Sunday, December 7, 2008

A few positive oddities

I meant to do nothing today.

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

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

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

I put The Boy in his very own bed.

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

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

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

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

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

Feng Shui

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

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

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

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

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

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

Friday, December 5, 2008

May you live in interesting times

A curse, for sure.

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

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

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

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

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

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

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

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

No, I didn't mean that.

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

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

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

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

Monday, December 1, 2008

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

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

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

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

Musical Daddy's father is away on a trip.

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

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

Help....

Saturday, November 29, 2008

Problem, in the future--need advice

I will be bringing this up with the doctor when we next see him (or her, depending on which doctor is on today), but I wanted to get some feedback from my readers as well.

As you've recently learned, I will be expecting child #2 in July, and The Boy will not be anywhere close to finished with his treatments and hospital stays. As a mommy, I'm certainly going to want to be with both of my babies as much as I can be. I am wondering, though, does the hospital prohibition on smaller child visitors extend to infants? Or does it even extend to younger siblings at all?

Fortunately, when the new little one is brand-new, it will be the summertime and Musical Daddy won't be in school. He may still be doing the summer program, but that's a much shorter day. So he'll be more available at that time.

But once the end of August comes, it's marching season. And then school is back in again.

I can't see pawning the new baby off on a sitter for the better part of the day every time that The Boy is in the hospital. We can't afford it. We'll keep Ms. R. in the loop, because there may be some occasions when we'll need someone to watch one or both children, but not all the time.

Remember, also, that the new baby will be nursing, because we won't have it any other way. Certainly I pumped for The Boy, but that was during the schoolday, which was pretty short, and The Boy napped a lot with Daddy during the day. I don't have objections to pumping and feeding bottles but I don't want it to be for dumb reasons.

I guess at this point this is just a rant...but if you can offer any advice on what to do about everything, please share.

Normal

The hospital thing is going...okay. It's not fantastic. It's the hospital. But The Boy is having a reasonable time. He is happy enough, and most of the time he feels okay. The first night here was absolutely miserable, but the next two nights were fine. I ended up staying, along with my mom, the first night because I fell asleep. The next night, my mother stayed, and last night, Musical Daddy stayed and they had guy's night. How cute.

We served him turkey for lunch today and it must have triggered some sort of nausea because he puked up a bunch. Ew. We meant to offer him some soup and fries, which are now cold. He's sleeping on Grandma.

The television is on, frequently, and he has his favorite videos. The room has a VCR but, sadly, no DVD player. The playroom has tapes, though. Goodnight Moon, of course, for sleepytime, and the Disney Sing-Along Songs "You Can Fly". He enjoys the music. When the tape ends, he points at the TV and looks at us.

He also has said "ap" a few times and pointed to apples! He likes apples, although he only takes a few bites at any given time. He picks up the whole thing and chomps away. Unfortunately, the apple a day doesn't really do the trick. Because the doctors still come.

Almost all of David's nurses are ones that we know already, many from his initial stay at the end of June. Today's nurse was the very first one that was caring for The Boy when we brought him in for his diagnosis.

So this is what we do. Every few weeks, we hang out here.

Friday, November 28, 2008

Thanksgiving

Anyone who has had any contact with my family knows that we know how to throw a party. More specifically, we know how to make a feast. I think I mentioned that The Boy was slated to spend Thanksgiving in the hospital (and if I didn't, Musical Daddy certainly did), but there was no reason not to make the meal. Besides, thanks to a generous donation from someone at The Boy's treatment center, we already had a nice big kosher turkey.

So we did it--Thanksgiving at the hospital. Pictures will follow. The Boy enjoyed the company and socialized beautifully. Thanks to Justin and his mom for a DELICIOUS pareve chocolate cake.

Despite the ridiculous second half of the year that we've been having, we have so much for which to be thankful. Certainly the "im yirtzah" (the phrase is "im yirtzah Hashem" or "if G-d wills it"; the status of a pregnancy is considered to be fragile in the Jewish tradition, which is why we say "in good time" (but in Hebrew) to congratulate a woman on her pregnancy, and also why we don't do baby showers) as well as The Boy, who is handsome, charming, smart, friendly, and so sweet. Our families and friends. Our jobs (even though I have to leave mine, I'm still thankful because they'll be giving me extended leave so I can come back if I want to). Our lovely home. And an extra thanks for my mom who, bless her heart, is staying the night at the hospital with The Boy.

So I can get sleep. Which I should do.

Wednesday, November 26, 2008

Here we go again....

The Boy is going to be a big brother! Number two is on the way, EDD 07/04/2009.

Of course, when we found out about it, we still thought that The Boy would finish treatment in January or so, but nevertheless, children are always a blessing.

Besides--if babies only happened when they were convenient, there'd barely be any babies.

This ultrasound photo, taken today, is pretty good. You can already see the head, and we saw the heart beating on the monitor. Wahoo!

Sunday, November 23, 2008

Cancer friends

I was just remarking to Musical Daddy that since we're in this cancer thing for a much longer haul, we could really use some cancer friends. Specifically, parents of little kids who have cancer. I hope that there aren't too many around, because cancer sucks, but if they're nearby, we think we want to be friends with them.

Here's the thing, and please don't take this the wrong way as if we don't appreciate your love and support:

Every conversation that we have with anyone is colored with the issue of The Boy and his cancer. Usually when you talk to someone and you ask how they're doing, you may also ask how the kids are and what they are up to, and it's a pleasantry, and it's fun. Except with us. Every time you talk to us, and you know you do this, you have to ask us how The Boy is, and you know that you're going to get some answer that is just chock-full of cancer talk. And sometimes, we want to give updates. Sometimes, we don't. Sometimes we just want to say "The Boy did a great job standing by himself today" or "The Boy made SUCH a mess eating fried rice" or, to a fellow toddler parent "That poo was SO disgusting, and of course, his hands went right for it."

But with cancer-friends, it would probably feel different to talk about treatments and illness and other cancer stuff. We'd talk about it and table the discussion. Then we'd talk about typical kid stuff, knowing that none of us wants to talk about cancer stuff anymore and none of us wants to.

So we love to have the support of our friends and family. Sometimes it helps that other family members have gone through cancer stuff. Sometimes it doesn't, because we want to believe that The Boy will have a better outcome than my mother-in-law or my sister-in-law's father. As in, they died of cancer. As many people do. We want it to be more like my mother's cancer, where she had surgery, a bunch of chemo, some radiation, and then she was done. Clean scans ever since. Of course, the whole on-treatment relapse thing already makes it more complicated. But point being, we want him to come out on the other side as a normal 3 year old or however old he'll be when he's done, with just some cool scars.

Thursday, November 20, 2008

Reinvention

Here's what it really means, The Boy's treatment schedule:

It means that I will be leaving my job. Since the treatment is expected to take two years, that's how long I'll be out of work. I will try to apply for a "leave of absence" just so that I have the option, should I choose, to return to the district and still keep my tenure and my years of service. There is no guarantee that I can even get such a thing. The school board would have to approve it, and while it helps that two board members are parents of some of my favorite orchestra students, I'm not sure if a two year leave is even feasible. I'll find out soon enough

I guess when they advertise the position, it will be a leave replacement with the possibility of a permanent spot. It is a good time of year to find a new person, at least.

It is with a heavy heart, indeed, that I even speak about leaving my job. I love what I do, and I could not ask for a better place to work. Orchestra programs are somewhat rare to begin with, and mine has been consistently strong. Support for the arts is abundant (which I hope will continue even in the wake of ever-elusive test score improvement). We have a supervisor who fights for us, and my building principal has always been a champion of our programs as well.

I'm good at my job. The students really play, and they develop an appreciation for "art" music as well as the craft and technique of playing an instrument. I was pleased today that several students had, in their little heads, a piece that I had written for them. Are they perfect? Of course not. Do they practice enough? Of course not--as if anyone ever practices enough. Do they drive me crazy, frequently? Indeed they do. But the challenge of working with them and bringing out the best in them is what gets me out of bed at o' dark-thirty every single morning.

My identity is wrapped up in the fact that I am a musician and music teacher. Seeing as how I have not been able to make the time to practice my own instrument, either playing or singing, I haven't felt like much of a musician. Leaving my job, of course, makes me not much of a music teacher either. I'm sure that many moms who stay at home also struggle with identity issues, feeling the need to identify themselves as a person who formerly worked in a certain field, rather than "just" as a mom.

Remember, though, that Musical Daddy stayed home with the boy from the time that he was not quite a month old until the beginning of summer, also the time of his cancer diagnosis. But he only stayed home with The Boy while I worked, in my teaching job. In the afternoons and evenings, he had marching band, private lessons, or chorus. I would say that we were living on one-and-a-half incomes. And he loved being at home with The Boy.

I'm not really the type to enjoy staying home and spending a lot of time on domestic matters. Of course, I try to do my share of housework (when I notice it), and I put food on the table and in the lunchboxes. But...this is going to be a new challenge.

And becoming a permanent fixture in a playgroup is out of the question, because if any child in the group is remotely sick, we can't be there. The library is a possibility, but questionable as well. Grandpa has agreed to meet us a few times a week at the VERY upscale mall, which is halfway between his house and our house, for walks.

I'll find a way to make it work. It should be interesting. Maybe I'll find the time to exercise more. Practice more. Compose more. Publish some music, perhaps.

Let's not get carried away--The Boy does tend to keep one rather busy.

Tuesday, November 18, 2008

Bam! Kick it up a notch!

The Boy's chemotherapy regimen is going to change. Radically. Because of the new growth while on treatment, he is going to receive the same treatment as a Wilms Tumor patient who has relapsed. In a way, that is exactly what has happened.

The treatment is expected to take approximately two years and will be predominantly inpatient; three to five days in the hospital, followed by about 2 weeks off in which he will have his blood counts done, and then repeat. Likely, his first inpatient chemo will take place around Thanksgiving.

I will elaborate more on what this all means for our family in a later post, but although the light is visible at the end of the tunnel, it's mighty far away.

Monday, November 17, 2008

Vinegar, Breastmilk, and Windex

If you've ever seen My Big Fat Greek Wedding, you'll remember the older gentleman (Grandpa maybe?) who used to fix everything with Windex. Including elbow pain. Windex was THE answer.

Of course, we'd rather not try to fix everything with Windex around here because I've heard that it's not so healthy for babies.

However, you can fix many of your household issues with vinegar. And breastmilk.

Let's play a little game and see if you can guess which liquid solves which problems (by the way--these are all true):

- A few drops as a cure for pink eye

- Put it under your nose if you are going to be in an allergen-heavy situation

- Use it to get rid of crud on pans and double boilers

- Use it to help remove buildup from cloth diapers

- Use it to cure diaper rash





Obviously, items 1, 2, and 5 are breastmilk; items 3 and 4 are vinegar.

Great thing about vinegar is that it is food, and completely non-toxic.

Sunday, November 16, 2008

Carnivore

You should have seen this kid power through his steak yesterday!

We're glad to see him behaving a little more like himself, even if only for a little while.

Thursday, November 13, 2008

Sunshine and Lollipops

It seems to be taking all three of us a lot longer than last time to recover from this surgery and hospitalization. It doesn't help that we picked up a cold somewhere in the hospital. The Boy is, fortunately, healing pretty nicely and returning to his normal self. He is eating meals and snacks pretty well. Unfortunately, he is also so attached to my boobies that I'm getting sore. Owies.

This afternoon, I had a few moments that really solidified my feelings about our whole situation. A little girl, about three years old, was skipping along behind her mother in the supermarket parking lot, looking just as happy and carefree as she could be. A mom walked through the supermarket with her baby girl, maybe 8 months old, doing the whole googly-eyes and faces and such. And I thought, where are my sunshine and lollipops? Maybe life isn't always like that with kids. I know it's not. Even before The Boy's illness, we had our ups and downs with him. Sometimes he drove us crazy. Other times he was so sweet and endearing that we'd grin for hours just because of something silly that he did.

Now that The Boy's illness is a permanent part of who he is and how we relate to him, we can look at our life together in two ways--everything is that much more of a blessing, or we have so many more chores than other parents. We feel both, frequently. The first time that we saw him smile after his surgery, either time, was magical. But those few post-surgery days were SO hard. I pumped milk for 5 days, every 4 hours during the day. It was hard to hold him, and sometimes it was better for him not to be held, because his position made breathing a little problematic.

Spending time going to the hospital (planned or unplanned), the doctor's appointments, waiting for results, taking his temperature and wondering if we'll have to go to the ER, hoping upon hope that he'll keep his meals down, and getting him to take medicine--now far more complex than just the applesauce--is what most of our lives seem to be now. It's hard to focus.

I'm starting to get a little worried about his development. In many areas, he is advanced. Specifically, in his fine motor skills and in some of the ways that he plays, he does a fine job. He knows how to use a spoon and fork although usually his fingers are his preferred dining implement. But he doesn't walk. He doesn't say any words other than "mama" and very rarely "dada." He has a checkup with his pediatrician next month, at which point we can discuss some of his milestones and whether we should truly be concerned.

We just hope that we're getting close to the end of this cancer crap and he'll be done forever with it. Of course, he won't really, because he'll have frequent scans to make sure that none of this stuff comes back. A little something hanging over our heads, and his head once he is old enough to understand, for the rest of our lives.

It has to be worth it. He's too beautiful. He's precious.

Tuesday, November 11, 2008

Be it ever so humble...

Since I went to work today, I didn't get to update throughout the day but...WE'RE HOME!!!!!!!

Musical Daddy gave me nothing but good news today, and at about 3:00 he told me that The Boy was being discharged. I drove down to pick them up after I finished with my rehearsal. We got ourselves ready to go, and away we went.

Lots of car time logged today, but certainly worth it.

Here's a cross-reference to Musical Daddy because he has both the good pathology news and cute pics of The Boy.

Monday, November 10, 2008

And away troubles go down the drain...

More accurately, they removed the JP Drain this afternoon. It was a fairly agonizing process, especially considering that The Boy's skin had healed over the stitch a little bit. Once the doctor finally got a good grip on it, he then had to pull the thing out. It was about a foot of tubing that was still inside of his body that we didn't see, in addition to the thing with the bulb at the end that we did see. The tube then widened at the end and was about 1/2 inch long, coming out of the little tiny hole where the tube had been resting. We're glad that thing is out and I'm sure that The Boy is as well.

I'm also glad that he has become reacquainted with the art of thumb-sucking. Once he was done screaming his head off and trying to bite down on anything that he could just to take away the pain from the drain removal, he calmed down, took his thumb in his mouth, and went to sleep.

Our friend from the Chai Lifeline foundation brought The Boy some toys, and we were thrilled to see him focus on a shape-matching toy because he hadn't done much in the way of playing since before the surgery. Maybe a bit of cup-clicking in place, but that's about it. This toy is a soft box, about 9 inches length/width/height, with circular, square, and triangular cutouts for the hard and soft shapes that matched. He was remarkably good at matching the shapes to the holes!

But back on the drain issue...the pain team had said that the fewer tubes and devices that a person has, the fewer his pain management needs are. Many people stop asking for pain drugs once the stupid NG tube is out.

I didn't realize how huge the JP drain was--I would have been pretty ticked off if something like that were hanging around inside my guts.

And you were going to tell us this when?

One of the nurse-practitioners from surgery came in to see David. She took a look at the JP Drain and said the same sort of thing that's been said for days--want to see how it's doing and then think about taking it out.

It looks irritated and if it's not infected yet, it very well could be soon. Not that I'm a doctor.

She then asked what our follow-up plans were with oncology. I said that we'd have to wait for pathology before deciding what to do next. "Oh, it's ready, I can print that out for you right now."

Excuse me?

The pathology is ready and you didn't bother to tell us?

She backpedaled and said that it must have only recently become available and explained that it takes about 72 hours to finish. Do the math, kids--that's 3 days. So, Friday night. Maybe I can accept that since it was the weekend and now it's Monday, it may have taken longer. BUT if she knew that the pathology was back, shouldn't that be one of the first things that she tells us?

Sunday, November 9, 2008

Evening...

The Boy was excited to eat some food. Unfortunately, his stomach didn't share his enthusiasm. Ew.

He had an ultrasound done on his testicles. That's right. And, believe it or not, he was pretty still for the whole thing. He was lying on his back on top of me, just chillin' there. No problem at all. The reason for the ultrasound was that the fluids from the IV cause some swelling in there. But...they just wanted to be sure that all it was, was fluid and not some other problem.

That's all we need--nut problems, on top of everything else.

He also still has his JP drain in there, and we had the surgical resident examine that area, as well as taking a look at his stomach, which seems to be rather distended. We have some recent photos of The Boy in which his bare belly is visible, and it is pretty flat most of the time.

Hopefully that issue will also resolve itself. No more food, for now, but nursing and clears are still okay.

But, some good news

The Boy did eat a few Cheerios and drank a bit of juice, too. He hasn't yet nursed since this morning, when he brought up all that milk. The Cheerios and juice stayed down.

Come Wednesday...

It looks like Wednesday is the day that we'll be getting out of here, simply because everything takes that long.

One of the surgical residents came up because I had asked about The Boy's JP drain (Jackson-Pratt drain; it's a bulb on a tube that is inserted to help fluid drain away) because the area around it was looking red and possibly infected. They are taking the drain out today. I asked him, straight out, when The Boy would get to leave and what they are looking for before talking about discharge. He said that the tubes and lines have to be out (well of course, goofy) and that they had scheduled a renal ultrasound for Tuesday because they always check on it a week after surgery.

Would have been nice to tell us, straight out, that we'd be here for a week and then some, instead of just having us sit here wondering.

Last time the wait was also unbearable, because they wanted to get pathology back on the tumor before he could be discharged, because he was also to have his first chemotherapy treatment inpatient. But I felt like they were more up front with us. They said that The Boy looked good, and The Boy was eating normally at that point, at least, and it was just a matter of hanging out with him in the hospital during the day. He'd just get his Norvasc twice a day and get vitals done from time to time, and still have his diapers weighed.

Was it because The Boy doesn't normally receive care here, or is this how everyone gets treated? It seems like every time we turn around, there's something that they just don't bother to tell us.

Musical Daddy will go to work on Monday; I'll go to work on Tuesday. Then, assuming that Wednesday is actually when we'll be out of here, we'll both be here on Wednesday.

Get me out of here...

We are SO restless, The Boy and I. We have to get out of here.

I am annoyed with the casual attitude that the doctors seem to have about the progression of The Boy's treatment. He seems to be getting better, kind of...but how would they know it if they never see him? The surgery docs stopped by to see him early in the morning yesterday and early this morning (woke me up pretty harshly, too, by shaking my leg repeatedly). That's a mighty long time, IMO. They didn't return any calls regarding when he could eat until FAR later than they should have. The Wilms Tumor email group was confused as to why he wasn't allowed to nurse.

The nephrologists came in. They had nothing new to say, really, just that they think that the additional blood pressure medicine is working. The urology team came in. The Boy has that same testicular swelling that he got during another hospital stay, from having too much fluid. They mentioned that they wanted to do an ultrasound...still waiting on that, too.

I hate how someone says that they're going to do something, and then they don't, and then I ask about it, and the nurse says "oh, they're just putting the order in right now" which says to me that they forgot.

He is currently allowed to eat but hasn't done so yet. He nursed last night, just a bit at a time. Then this morning he nursed enthusiastically but brought it all back up. Hopefully he'll try again later and keep it down. I'll also offer him some noodles, which he loves.

Saturday, November 8, 2008

Finally!

The Boy got the all-clear to start nursing. He didn't have much--just a bit at 6:20 and a bit at 7:20. I offered again at 8:20, but it seemed as though he had too much gas in his stomach to be able to tolerate it. He had several truly disgusting burps, where we thought that he'd throw up but he didn't.

Speaking of disgusting, The Boy started pooping in earnest. He had 3 little poos, and then 3 BIG poos. They were THE most disgusting intestinal productions that I've ever smelled. Worse than the meconium at birth. Worse than his first poos after the last surgery. Nonetheless, we were so glad for him because it meant that his bowels were really waking up. We'll still have to wait awhile for steak and broccoli, though.

Many of the nurses down here in this unit have been pretty helpful and attentive; not so this afternoon, and the jury is still out on the night nurse. I'm pretty ticked off, as well, about the fact that it took SO long to get back in touch with surgery to have them tell us that he was able to nurse. They really should have told us something right away when they saw him in the morning, like "once he has big poo" or "8 hours after the NG suction comes out" or even "we'll check on him later today" and actually mean it.

New annoyance: The Boy is on the monitors, and pretty much every time he moves, his heart rate jumps up, setting off an alarm. SO annoying! We now know what button to press to shut it up for awhile, but sometimes it takes awhile for anyone to respond.

Heaven forbid he actually has some sort of cardiac episode--with the swiftness that we've experienced today...well...I'd rather not go there.

Did someone screw up?

Good news: today The Boy had his NG tube removed, so his handsome face is unobstructed by tubes and tape. I'd imagine that he probably feels more comfortable without it in there, but if his stomach starts to distend or if he throws up gut-sewage again, it will probably go right back in.

Here's the first possible screwup: The Boy had the NG tube on suction when he came into the ICU from surgery on Tuesday. On Wednesday morning, the NG tube was taken off suction and was just...sitting there. By Wednesday night, he was throwing up gut-sewage every few hours. FINALLY the nurse put him back on suction on Thursday afternoon, saying that she'd just do it and then check orders. When he was moved out of ICU, it was disconnected again and not hooked back up. Up came more gut-sewage the next morning.

Thing is, I wonder if, had they kept him on the suction continuously through Tuesday and Wednesday, maybe Thursday too, that he'd have been off of the suction by Thursday night or Friday and been nursing by yesterday or today. As it is, last night he was terrifically miserable because he was awake enough and well enough to be hungry and pawing at my shirt, and screaming hysterically. He was medicated a few times over the course of the evening, even though he may or may not have been in pain. And I hate giving him medication when something else will work better...but he wasn't ready to nurse yet because the NG tube was still in there and still sucking stuff out.

Next thing: the original pain management plan was to use an epidural. Just like the kind that some women scream for while in labor. It sounded fine at the time, but once he came out of surgery, it was apparent that the incision ended up being too high to control the pain by means of the epidural. They left it in for far longer than it needed to be, and the first night after surgery, it took almost 2 hours from the time that the cartridge ran out until the time that it was replaced. So we had something in his spine for a long time even though it didn't seem to be doing anything. I've never had an epidural, but I've heard several people complain about headaches from having had them, and I wouldn't be shocked if The Boy had a headache in addition to all the other crap in his life this week.

They switched him to the morphine drip anyway, which he probably should have been on in the first place. Problem with morphine is that it slows down the recovery process in that the bowels stay sleeping. It's a tough balance.

I'm going to reiterate something I said earlier on a message board and got chewed out about by someone who either doesn't understand or is just too stupid to remember what it feels like: There are no emergencies in the hospital. The Boy sets off his monitors every time he cries, and you'd think that someone would come in to check on him. Sometimes they do; sometimes they don't. If it weren't for the fact that Musical Daddy and I are so on top of his care and so knowledgable about what's going on with him, I can't even imagine what would be going on.

Friday, November 7, 2008

Doing his civic duty

Maybe should be spelled differently...but we finally got some poo from The Boy! Hopefully it's enough and The Boy can start nursing tomorrow and eating tomorrow evening.

Currently, he is on IV nutrition. It feels like that's a step backwards, because were he able to nurse or eat, obviously there would be no need for it. It's just that he hasn't had anything to eat since Monday morning and hasn't had any liquids to drink since Tuesday morning, and we certainly don't want him losing weight. I'm glad, by the way, that during his previous chemo-related illnesses and hospital stays, he hasn't lost weight.

I'm a little scared, on his behalf, that stopping the NG tube and suction will cause him to puke more green stuff. That was probably one of the more disgusting things we've seen.

Another strange milestone:

They removed The Boy's foley catheter at about 2:00, and when I changed his diaper at 4:00, there was no fluid output. Fortunately, at 5:00, his diaper was 50 grams heavier than it had been, so it means that he can pee on his own!

Couch Tater


This is a picture of The Boy yesterday, sitting up for the first time in the ICU and getting ready for transfer down to the "regular" inpatient floor.

He is still not so interested in playing, and he's been watching TV all day, pretty much. Watching Goodnight Moon all day, to be precise. Right now we're watching "Word Girl" on PBS Kids.



This photo is in his new room, with some toys in front of him. The nose tape has been changed and looks a little less freaky. He has since had several tubes and devices removed--the morphine is gone, the foley catheter is gone, and the monitors are off for now. He will get the monitors put back on temporarily should he require a morphine shot, but he doesn't seem to be in majorly agonizing pain, just some discomfort.

We are still waiting for some poo. Until there is poo, he doesn't get to eat. Which means I will still be pumping. I have a huge bin in the fridge. Technically, I don't have to pump as often as I have been, because it is likely that once The Boy is ready to resume nursing, it won't take long to return to my normal supply, but I'd rather not risk it. It is unlikely that we'll really need all of this milk, but then again, I'll probably send a bottle or two with The Boy for the next few weeks as he continues his recovery.

Until he poos, and then is able to eat, we don't leave.

Come on, poop!

DVD Review: Goodnight Moon

Many parents are familiar with Margaret Wise-Brown's story about a little bunny going to bed and saying goodnight to everything in his room. The HBO special, Goodnight Moon, from the late 1990's is about half an hour long and includes a few other stories and songs, as well as several children discussing their dreams and nighttime rituals.

An all-star cast enhances this already brilliantly crafted program--Susan Sarandon reads the title story, and there are performances by Tony Bennett, Lauryn Hill, Patti LaBelle, and more. That said, the real stars in this program are clearly the children. They are "real" children, not actors, from different schools, religious organizations, and other groups including Rainbows, which is a support group for children who are dealing with the loss of a close relative.

From beginning to end, the children are simply captivating. Their delivery is genuine. The subject matter, while not completely serious, is well-thought out.

One of our favorite parts of the program is when two boys, one right after the other, try to tell people that monsters are not real and that there is nothing to fear. "They just do that to make television shows, like Godzilla! There's no such thing as a huge lizard that goes around and steps on everything" followed by a little guy with an endearing speech problem in which can't say his R's yet "If you have a toy that's really scary, and it comes to life in your dreams, you have to stand up to it. That toy isn't even real! You've gotta tell yourself, 'that toy isn't real. that toy isn't real.'"

The children are very intelligent. One little girl describes what a lullaby should be, and has written her own lullaby. Another girl narrates a very vivid dream that she had about the Beatles. A boy instructs us that "if we didn't have dreams, we wouldn't be able to notify our minds into wonderful things or horrible things...while we're sleeping."

The majority of the children seem to be about 6 or 7 years old, with some being a little older, and a few a little younger.

In terms of areas that need improvement...I cannot think of any! The program is great. It even stands up to about 20 viewings during this hospital stay with The Boy, and then some, without being annoying. I still look forward to the part where a little boy says, "If you have a bad dream and you're scared, you just squeeze your teddy bear and then you'll feel better."

Everyone--buy this movie for your kids. I'd say that children up to age 8 would enjoy the movie, no question, and older children would like it without admitting it.

Thursday, November 6, 2008

New Room!

The Boy has been moved from the ICU to his new room. It means more space and a more comfortable setting. There is a couch in the room as well as space for the airbed, so it is likely that both Mom and I will stay here tonight.

We've watched Goodnight Moon so many times today. I'm really not sick of it--it's a very cute DVD and I highly recommend it. In fact, I'm going to write a review. Haven't written one in awhile.

We're thrilled to be in the new room because it means that The Boy is getting better, and it's SO much more comfortable.

Striking the balance

We are waiting for a bed to become available in surgery recovery, but as soon as one is available, that's where we'll be going.

The Boy has had issues with throwing up stomach acid and bile. It's really disgusting. He has an NG tube, but for awhile it was just venting instead of being suctioned. Problem was, it built up and he kept bringing it up, so the nurse turned on the suction again and confirmed with surgery that it was fine to do that.

Here's the problem: the pain medication slows down the bowel's return to normalcy. However, pain is bad, and it hurts, so the pain medication is necessary. Until his stomach works, he has to have the NG tube in there. However, the NG tube itself probably feels pretty horrible. The doctor from the pain team explained, further, that many times, patients' pain med requirements decrease once they are able to get the NG tube removed. They turned down the pain meds this morning, and he hasn't had pain issues so much as stomach problems.

Furthermore, we want to get him off of the pain medication as soon as we can, so that he can start to return to normal.

Movin' on up

The Boy had a better night last night in terms of pain. Hopefully he's just getting better. They are turning down the drugs a little more, and he hasn't had a "rescue" dose of morphine since yesterday evening.

There is talk about us moving to the surgery recovery area, in lieu of the ICU, today. That's good news, because it means more space in a private room.

Grandma stayed over last night; Musical Daddy and I stayed at the apartment. Both of us got a good amount of sleep.

Wednesday, November 5, 2008

Give me something for the pain...

He's been in more pain. He was on continuous morphine, and he recently got valium to calm him down a bit; better that than more morphine, because we want his morphine dosage to decrease, not increase.

They had given him an epidural, which didn't do much good, as the incision was higher than where the epidural could really offer any relief. We did get to hold him today; unfortunately, his position wasn't so favorable, so he has to stay in the crib for now.

This is pretty crappy but he'll get better soon.

Morning--post-surgery day 1

My mother and I slept last night at the Chai Lifeline Apartment, actually getting some decent rest. Musical Daddy said that there were some pain management issues with The Boy during the night. And by "pain management issues" he meant that The Boy spent quite a bit of time in agony.

We have a feeling that this time around with healing will be more complex than recuperation from the last surgery.

He has a new scar, of course, this one running down the center of his stomach. Welcome to the Zipper Club, boy.

Tuesday, November 4, 2008

Surgery is DONE!!!!!

The Boy is out of surgery and still asleep. They removed the new tumor growth, which was a few inches in diameter, after only having been seen a month ago. They also removed the little tumor from the right kidney. There is something in his kidney that they put in so that it would continue to drain more.

He will be taken to ICU for the night, at least.

SO glad that it's over. We'll continue to update on his recovery and the pathology.

Still in there...

The Boy is still in there. So far, everything has been going as expected. A nurse comes out to give updates every hour or so. There is also a board that looks like a flight schedule, on which the patient's medical record number and status are posted. If his name is in green, he is still in surgery. Which he is.

The Boy is in surgery

Finally.

Fortunately, our 10:30 assigned arrival time was pretty spot-on. They brought us into the little room for surgery preparations. Doctors and nurses came to see us when they were supposed to.

The Boy received Tylenol and a "happy juice" kind of drug, to relax him and make him a bit floppy.

The only little hitch was when a fire alarm went off somewhere else in the building, and no procedures could continue until the light stopped flashing, which was an extra 20 minutes or so.

Probably 3 or 4 hours of surgery.

Mommy--I'm hungry!

That's where we are. For once, we arrived early to the hospital. Unfortunately, that means more time sitting around and waiting for The Boy to be taken to his next location.

He's hungry. He hasn't had a solid meal since breakfast yesterday, at about 6:30. He nursed and had juice and broth yesterday. Last milk was at 7:15 before we left, and with nothing substantial in his stomach, it means that he is not a happy boy. It also means that he won't tolerate being held by me, because he just starts crying and pawing at me, because he wants his milk!

We are awaiting the arrival of The Boy's cheering section--my mother, and Musical Daddy's father and brother. We will both be updating throughout the day--stay tuned.

Monday, November 3, 2008

Let's do this (wolf! wolf!)

Surgery is really going to happen tomorrow. The Boy's numbers were good and he's feeling better. I was especially pleased that his hemoglobin and platelets had improved so much, even from Friday night. He had been on neupogen shots since Wednesday, but those are only to jump-start white blood cell growth.

I really hope that nothing gets messed up.

I'm annoyed by the fact that we had no way to find out the exact arrival time until sometime between 3:30-6:00 today for tomorrow's surgery. I am even more annoyed, on The Boy's behalf, that the arrival time is 10:30. That means that he doesn't have the surgery until, at the very least, 12:00. More like 2:00, probably.

Not sure if I mentioned this, but the surgeon instructed us to have The Boy on a clear liquid diet for the entire day before. Which, fortunately, includes breastmilk. They conceded that he could have breakfast, because we eat early. But he will have had nothing substantial to eat for probably 30 hours when he is getting ready to go in for surgery. Had we known, he would have at least had brunch today. Maybe even elevenses. I can't even imagine how miserable he'd be if he weren't nursing.

I'm looking forward to this being over. Not because we'll necessarily have less time left of David being on treatment, as the results of this surgery will likely yield more problems and stronger poison, but because hopefully it means no more trips to Philadelphia.

Saturday, November 1, 2008

Just Visiting

Another ER visit, although fortunately it was just that--a visit. We arrived at about 9:00 PM and left at about 1:30 AM. Although we had been told to go a little earlier, we wanted to be sure that we were prepared for a longer stay, as our last 2 ER visits have resulted in admissions. Dinner was in the oven, and we wanted it to finish cooking so that Musical Daddy and I would have something to eat. Diapers were in the wash, and we wanted to be sure that The Boy had something to put on his bum.

With the rashes that he gets anyway from spending time in the hospital, with all the IV fluids and such, it almost seems pointless to use our cloth dipes instead of just taking the Pampers that they give us, but the Pampers smell SO bad that they turn my stomach (and that's before they have been on a baby), and I wonder what his rash might be like if he were not wearing his normal cloth underthings.

His ANC (absolute neutrophil count; the mature white blood cells) was high enough that they didn't need to admit him for the fever, and the fever seemed to be coming down anyway.

This morning, he seems to be much more like himself. He slept late (thank goodness) and was tackling us awake. He doesn't feel feverish. He hasn't eaten yet, just nursed; perhaps we'll try him with some lunch.

Friday, October 31, 2008

It might be go time

Tuesday. That's the most recent date we've been given. He's on neupogen, so that's one less problem that we have to worry about, is the white counts. Any other blood count problem could be fixed easily but the white cells have to be grown.

Nice thing about that is that we take Tuesday and Wednesday off, and then we have the next two days off from school anyway because of the NJEA convention. He may even be out of the hospital by the following week.

Here's hoping...

Thursday, October 30, 2008

That which the normal mom does

One of the first thoughts that I had following The Boy's diagnosis was that I'm going to be a "cancer mom" for a really long time. Technically forever, but at some point the responsibility will shift more to The Boy in terms of his follow-up. Everything takes on a new meaning when you're a cancer mom. Sometimes it is also easy to forget that children go through certain trials whether or not they are being treated for cancer.

For example, The Boy has had a few puking episodes this week and currently has a bit of a runny nose. He's teething. But he has cancer and is on chemo--is it the chemo or the teeth that are causing him to be a major grouch-man? I can't tell. Most moms wonder which tooth it is.

I look forward to surgery, because it's one more milestone. Most moms look forward to walking, running, and better table manners.

I am pleased with The Boy's table manners, even given the circumstances.

Some moms second-guess the pediatrician. I second-guessed the oncologist when I thought that they should have given The Boy neupogen before the surgery was to happen. She said that there was just no way to know, even though I knew that his levels were not done dropping. More to the point, as my mother said, Neupogen is a very expensive medication, and insurance won't cover it until it is REALLY low.

Falling asleep...baby on me...it's contagious!

Wednesday, October 29, 2008

Once again, it's NOT go time

White counts were too low; no surgery tomorrow. Now we wait, while the new tumor just grows and grows...

Crap.

Tuesday, October 28, 2008

I wanna push you around...

Since I last wrote, my mother came and went, for an extra visit. Awesome. She loves The Boy, and Musical Daddy and I okay too.

The Boy had bloodwork yesterday and will have more tomorrow. He will also have an EKG. By the way, we only recently found out that he needed the EKG as a prerequisite to surgery. Would have been nice to tell us this earlier but hey--what more do we expect? We made two trips for nothing, after all...

The Boy's last meal tomorrow is breakfast. After that, he's on mama milk and clear stuff. That will be truly exciting. As in, something of a nightmare. Doctor's orders, though. It's just a real drag when it seems like he is actually eating this week, only to lose a day of that good food. The Boy has weighed the same for quite awhile now. And he does look like a cancer patient. Complete with lack of eyebrows.

He's not in the greatest mood right now because more of those teeth are on their way in. The molars made their debuts over the end of the summer, and now come the canines.

Less than two days until surgery and it's one more thing to cross off the to-do list.

Thursday, October 23, 2008

Ain't no sunshine....

Just got a call from the oncologist, who received the results from the hospital in Philadelphia.

It's more tumor.

It is still a favorable histology tumor, which means that there are no anaplastic features. But it's fast as heck, and it means that the chemo isn't doing the trick. After the surgery next week, in which they will remove the tumor from the right side, which was there in the first place, and remove the new tumor from the left side.

No changes will be made to The Boy's treatment regimen until the pathology comes back following the surgery, after which the plot will thicken.

Wednesday, October 22, 2008

You'd think we never feed this kid!

The Boy was finally given some breakfast after not having had any real meal since Monday's dinner. He was allowed to eat last night but was still a little queasy from the sedation, so he just had a few bites of cereal bar.

The way that nutrition service works here is that you call and order it and it comes within 45 minutes or so. There is a menu, and kids can have whatever they want.

Except that they don't make omelettes for little guys! I guess they have a "junior" designation. I'm sure that they do, since first thing in the morning he was still on "clears" and wasn't going to get his omelette anyway. I asked them for the omelette and they said that they only do scrambled eggs and cheese for little ones. I then said, "You mean you can't put vegetables in there?" Perhaps they were assuming that since The Boy is so little, he could never eat an omelette, and it would be a waste of energy to make him one.

Wrong they would be, as he powered through his eggs and turkey sausage. He could not get that stuff in his mouth fast enough.

We should be good to go home soon. Just in time to go to chemo.

Tuesday, October 21, 2008

'Round Midnight...

We've been admitted. Or rather, The Boy has. That was awhile ago but he was sleeping on me so I was unable to update. And now, finally, he is asleep and NOT on me, so I can share information.

I should mention that the wireless internet didn't seem to be working in this room. I tried it several times; finally I opened a different web browser and in we went! Furthermore, I switched back to my regular browser and that worked too! Hooray! When you really want to get it done, you find a way.

The last post of mine is one that I shall never post again, for fear of karmic retribution. Never again will I say "The Boy's numbers were good" if numbers need to be retaken because that's the easiest way to get them to screw up. Apparently his hemoglobin dropped considerably enough for them to speculate that there was internal bleeding. An ultrasound showed that that was not the case, at least not that could be seen, but the doctors in the department, as well as his surgeon, agreed that it wouldn't be so good for him to be so far away and then have something bad happen. Fine. I'll take it. And kudos to the surgeon for coming to us personally.

Musical Daddy speculated that whomever did the procedure screwed up, to which I responded that the ultrasound showed otherwise and that the site of the incision looked fine as well. My theory was that someone did screw up, indeed, but it wasn't the doctors in radiology--it was the lab tech. The first hemoglobin reading was 12, which is fine for someone not on chemo and stellar for someone who is. More precisely, it is the minimum requirement for blood donation. However, I can't remember the last time that The Boy has had a hemoglobin level of 12 since he got into the chemo process, even after having had a transfusion 2 weeks or so ago. It is possible for him to have bounced back that quickly...but just not that likely.

Adding insult to injury for The Boy was the fact after FINALLY getting to crawl around and play, and then relax and go to sleep, the nurse wasn't able to get a blood return from the port. Greeeaaat. She said that she'd bring in another nurse and if not, call the IV team. The other nurse was able to get a blood return, at the expense of The Boy's first natural sleep since he woke up this morning (or, at least, since he got out of Grandpa's car) because she changed his position several times. One of our buddies at the usual treatment center, who is 5, has a port and sometimes has to "do yoga" in order to get a blood return. Such was the case with The Boy, who ended up lying facedown on my lap.

I'm tired but I just can't sleep. I asked for a bed instead of a crib so that I could sleep in it with The Boy, who, as you know, will not stand for a crib. It's a hospital bed. You know the kind. The Boy was so unsettled for so long and finally fell asleep...facing the wrong way. I'm going to move him...eventually.

This is a pretty nice hospital. If today were the first day that we had seen it, I would have pretty much nothing but lovely things to say about it. The Boy has a great room this evening, at least. Private room but pretty large, with a day bed, private bathroom, lots of counter space, TV, and PS2 to boot. There is food in the pantry which is...somewhere...and (this is one of my favorite little perks) the patients are issued pajama pants to go with their gowns! The Boy is wearing purple jammies with space koalas on them. Love the space koalas, could do without the purple although you know he's all boy.

Grandpa has been amazing. He's crashing in a lounge down the hall for the night. Plenty of room in here but he's not really the co-ed slumber party type.

I'll try some sleep..after I try turning The Boy around without waking him...yea right.

A little bright spot:

The Boy's blood counts were normal today. Very glad to hear that--at least something is going right.

Approximate wakeup time:

3:30. Or 4:00. Until then, they're just going to keep him drugged. The idea is that he'll probably be in pain from the procedure otherwise. He needs to stay on his back and if he's not asleep, that probably won't happen.

He is probably not going to be himself tomorrow. Likely a bit hung over.

and the story is...

The mass on the left side was solid. More tumor perhaps? Or a mass caused by infection? Rare, but so are Wilms tumors. Not the second spleen, and not a fluid-filled infection. They took a few little samples, and they're sending it to the lab. So...a few days, perhaps, and then we'll know.

The good news is that we don't have to stay overnight at the hospital, most likely. I guess I'm glad for that even though the overnight stay to treat infection would have been a more desirable option.

How scared should we be? Don't know.

The fact is, 90-something percent of kids may survive Wilms tumor, but if you're worried that your kid might not be one of them, those stats don't matter.

Here we sit...

and I guess we're doing okay.

The Boy is currently having his needle biopsy done. Father-in-law (Grandpa; but just so that we're clear, it's Musical Daddy's father) and I are sitting here, waiting. The first nicety that we've discovered here is that they assigned The Boy to a room and even though he isn't in it, we still get to hang out here. It is no more or less comfortable than the waiting room but it means that we don't have to move our stuff, and it also means that we don't have to be around bunches of other people.

But, retreating a bit, here's the rundown of our day so far:

Grandpa came for dinner and stayed over, as our house is further south than his. He had planned to take us on this little voyage so that I wouldn't be by myself, and because he is just that kind of helpful guy. We woke up and had planned to leave at 6:30. Last time we had planned the same thing and ended up leaving at 7:00. This time we did a little better, although right as I was strapping David in the carseat, I noticed that something smelled a little funny...okay, quick detour back to the house to change the poopy diaper, THEN we were on our way. We stopped at Dunkin' Donuts to grab a quick bagel breakfast, of course.

We hit some traffic along the way, which was to be expected. Grandpa has a GPS which has a feature that can design alternate routes around traffic problems. Grandpa dropped me off and went to go park, and The Boy and I made it in just in time. He was in a relatively good mood, still, although he didn't like being confined to one spot while I was sitting at registration.

Then back to the room. It's a little creepy to me that the entire department is the "sedation" department, but I guess that's not incorrect. The room resembles any other short-stay room, although it is a bit bigger than the rooms at our regular hospital. I liked the fact that while we did have to wait for things, we didn't really feel neglected during the pre-procedure assessments. The Boy did start to get restless, but a ride around in the wagon, pulled by Grandpa, really helped him to feel at ease. The bubbles helped too.

The port access was a little more dramatic than usual, probably because he was already irritable from having no food. By the way--the term for pre-procedure fasting is "NPO" which stands for....something. I would Google it but I don't feel like it. He was more aggravated, crying harder than he sometimes does for port access, and it took him longer to calm down.

Sometimes, he is able to get through the port access procedure without crying, sucking his thumb instead, but that's only when he's been allowed to sit up on my lap. Usually they have to pin him down, which aggravates him quite a bit more than the needle does. If appropriately guarded, he won't abandon his sucking thumb to swat at the needle.

They took blood, as they always do, and I'm assuming that they're going to get CBC/Diff done. They may take more blood later in the day.

He's back! More later.

Saturday, October 18, 2008

Got one right for sure

Today we went to the diner for breakfast after having missed on this outing for the past several weeks. If the weather is decent (meaning nothing falling from the sky), we walk. I usually get an omelette along with potatoes and toast, which The Boy shares. Musical Daddy often gets a "burrito breakfast" that comes with potatoes as well; he shares the potatoes but not the burrito.

GOOD eatin' this morning. It helped that we put ketchup on breakfast. Everything that we gave The Boy to eat was gone by the time he decided that he was done. I'm so glad...and yet, there's chemo coming up soon so all of this good eating will probably go out the window. At least he has otherwise good eating habits to which he can come back.

Now that The Boy is nearly 14 months old, it's interesting to compare him to other children of a similar age in terms of eating. Three other children that we noticed at the diner come to mind. The first is a boy, almost 2, whom we see every now and then, although today we just noticed him on the way in. When he was smaller, he'd mostly eat tiny pieces of things with his fingers. Now he's a silverware-using guy. We're pretty impressed by his prowess with the fork and spoon.

The other two children, however, were another story. The first child that we saw was pitching fits about being in the high chair. When he finally made it in, he just got a scrap here and there. He also had something in a bottle at the table. The second child looked older than The Boy by only a bit and was sitting in the high chair being spoon-fed oatmeal and bananas. He was drinking from a cup with a straw, though. The family was impressed by the way that The Boy fed himself. I recommended broccoli.

I can't tell you how glad I am that The Boy was feeding himself right from the beginning. The fact that we weren't obsessive about rushing him into eating food, the fact that we never cared about whether he was eating "stage 1" or "stage 2" jarred nonsense, and the fact that we already knew that everything he touched was going into his mouth at some point anyway made the decision pretty easy for us. Musical Daddy was a bit skeptical at first--after a few weeks of The Boy playing with food and eating just a bit at the table, he asked when we were going to grind up a banana and feed it to him--but he bought in pretty quickly as well.

The Boy was eating at restaurants regularly by about 7 months. Before that it was somewhat prohibitive because he was only eating a few things. But as a result of his always sitting at the table with us, for as long as he was able to sit, he always knows how to behave at mealtime.

Score one for us.