Saturday, January 30, 2010

Group Dynamic

Twice this week I have experienced the fall-out from rarely being able to go anywhere with The Boy. He just doesn't know how to behave in group settings or in large public places. I wouldn't say that he's bad or that his actions are anything other than age-appropriate, but he just isn't used to it.

I remember awhile ago, taking him to Story Time at a neighboring library, and realizing that he had no interest in what was going on. He wanted to look at the books and run around. Thankfully, I had friends there to watch the sleeping Meatball. They told me that I should bring him to stuff like this whenever I can, and he'd get used to it. Easier said than done.

On Friday, we went to the Jewish Community Center for the little kids' Shabbat. It was very cute--there were a few Shabbat songs and games, and then we lit the candles, had "wine" (it was actually apple juice) and challah. He had no interest in the songs and games--the event took place in a playroom and he was much more excited by toys with letters and numbers. I was glad, though, that when the facilitator said it was time to light candles, The Boy exclaimed, "candles!" and joined the group. He was happy to have the juice and challah as well.

Today, we went to a benefit concert, raising money for Haiti. The concert was quite good, and there were other kids there. Unfortunately, The Boy didn't actually stay to watch it. He did get to see instruments before the show, but once the show started, he had no desire to be an audience member. We had a backup plan--Daddy brought him to the car and got him set, and Grandpa took him home. Daddy and I actually got to watch a concert!

I suppose that The Boy will learn. Eventually. And we have to keep trying to bring him places like that, so that he gets the experiences.

Laundry beckons...

Wednesday, January 27, 2010

Set to go

Meatball has teeth coming through, finally. Eating is going well for him, too. I think I'm going to try giving him peas next, to see how his pincer grasp is coming along.

I am officially on the list to substitute-teach in town. I'm not quite ready, intellectually. I need to get my schedule back onto school time, and I need to...remember how to deal with a class full of kids. I finished my paperwork, and I supposed I didn't get that I'd be on the list right away. Fortunately, I talked to the coordinator and asked her about being able to work or not work certain days, due to The Boy's illness. She said that if I could work, I should take jobs, and if I can't work, I shouldn't. Better to take fewer jobs than to take jobs and not go.

I've been exercising, officially, since last week. It's been fun. Mostly, I'm getting back into the place where I was before I let my lifting lapse. I'm doing a 3-day split and so far sticking most with what I'd been doing to be sure to use correct form. Once I feel comfortable with that, I'll see what else I can do.

Monday, January 25, 2010

The Counts Crapshoot--A Review

The Boy's counts for today: WBC 1.5 with an ANC of 315; Hemoglobin 9.1; Platelets 29,000.

The white count is likely to roll back up soon because of the difference between the ANC and the whole white count. The hemoglobin...well, that generally doesn't go back up without a transfusion but we might make it to admission time before a transfusion would be necessary. Platelets...hmm. Staying on Neupogen suppresses the ability of the platelets to recover. 29,000 is nowhere near recovered levels, nor is it nearly low enough to transfuse.

Unfortunately, due to timing, he needs to stay on the Neupogen. Hopefully from Thursday to Monday is enough time to recover those platelets.

Time to make the dinner!

Sunday, January 24, 2010

New rules of the game

The remote game. This is the one, started by Musical Daddy, in which a remote control is placed atop a head or a knee or something, and a baby has to climb to get it. To the victor go the spoils...until the next round.

There are two issues with the game, as I saw it, when I played with Meatball after our nap. One is that when The Boy started playing the game, we didn't have this headboard with our lamp and other stuff that isn't ideal for babies on it. The other is that when Meatball found that he was having trouble obtaining the remote, he thought that he'd settle for a lesser prize and grab for my glasses.


In other news, Musical Daddy and I went to see Avatar this morning. Amazing film. The story itself wasn't special; it was the details and the elaborations that made it great. Unfortunately, I don't think that I was meant to wear those 3-D glasses for 3 hours, and my eyes hurt upon my return. They still do.

More on the movie in a later post. If I get around to it.

Saturday, January 23, 2010

Head above water

It's been a good week.

We are officially out of the storage locker. Thanks to a nice guy with a truck, and my sister for knowing a nice guy with a truck.

The Boy has eaten well all week and, possibly due to careful administration of Zofran, has kept things down over the past few days. He approaches the kitchen table (really a peninsula, not a freestanding table) and asks for stuff several times a day. Usually he wants more noodles, but sometimes he wants cereal or "chips" (the cinnamon apple rice sticks that resemble Taco Bell's cinnamon twists). He has developed a taste for some things that are off his diet, because we have had them, or Meatball has. We just need to be careful. Considering that he mostly eats noodles, which are devoid of sodium and potassium, it balances out.

The Boy is learning about Batman. Awesome.

Friday, January 22, 2010

Family movie night

First we tried Beauty and the Beast, in bed, with popcorn. We got up to the part where Belle agreed to stay in place of her father, and then The Boy got bored.

Downstairs, where Grandpa was eating ice cream. We all had ice cream--I even bought chocolate syrup.

Now we're watching Finding Nemo. The Boy is amused; he laughs at some of the slapstick stuff and even said "silly fish" at the beginning of the movie. And he just said it again.

He is wandering a bit and playing at the table, not necessarily paying full attention, but he rarely does.

We have watched Tubby the Tuba a few times over the past two weeks. If I haven't mentioned it on this blog, that's his new favorite movie. He loves it! Of course, he enjoys the instruments and the elephants.

This week at home has been pretty good. The Boy is doing fairly well, all things considered. We have to be on top of things with the Zofran. Yesterday, everything stayed down, and he actually ate quite a bit. Meatball was eating avocado, and The Boy wanted some too. Avocado is something that we removed from his diet due to high potassium content after his visit to the ICU last May. However, since The Boy has pretty much stopped eating vegetables and fruits, save for the occasional honey delivery system apple, we let him have some. He enjoyed it. I'm thinking, guacamole--heavy on the sour cream, light on the avocado.

Right now we're still on the way down with the white count. Happily, we're still okay on reds and platelets. Possibly next week he might require a platelet transfusion. His hemoglobin was above 10 yesterday. Hopefully by the middle of next week, he'll be good to go.

I'd like to hit Pittsburgh Mills with him next week, once we get some good white counts. They have a cute little indoor playground, and he likes going for stroller rides in general, so we could get some nice walking in as well.

Meatball is fantastic. And very sweet. Last night, he slept from about 12 to 7. Still not a huge fan of the snuggling, or the bed-sharing, so when he is up a lot, I'm up a lot. And bouncing back and forth from our room to his. Not being too bound by time, it doesn't bother me much.

Wednesday, January 20, 2010

Nothin' like a few little wins

Things are...okay. It's been nice. The Boy hasn't been feeling great but...okay. And he's been lots of fun. One of our activities has been for him to pick out instruments and ask us to play one song, then switch, then one song, then switch.

We went to work out today. We went to dessert on Sunday night. Last night, I had rehearsal, and Musical Daddy went to check out a chorus.

Glad to hear lots of NED's from our fellow Warriors. And still pretty darned happy about our own.

Saturday, January 16, 2010

We can do "uneventful."

I had a little chat with The Boy's primary oncologist. He's a neat guy. The playroom (where The Boy likes to spend several hours a day) is a "medical-free zone," so no doctors or nurses can come in (although obviously if the patient needs something, they leave and come back). He approached the door, and I opened it to see him. He explained that he couldn't come through the door, as there was a force field prohibiting him, a doctor, from entering. Silly doctor.

He was pleased that The Boy's chemotherapy stay has been relatively uneventful, especially given the "excitement" that we've had since last month. The Boy will be receiving blood today and will hopefully be okay for a little while in the transfusion department. He said that they will do the GFR test again before his next chemo unless the creatinine level improves. Could happen, but not likely. The creatinine level, tested regularly as a blood draw, is a decent indicator of kidney function, but the GFR is a more thorough measurement. I'm intensely curious as to why, over the course of having been on chemo for over a year, The Boy had not had such a test before.

All of the chemotherapy drugs that he receives can be nephrotoxic (bad for kidneys). They are getting to the point where they are adjusting his drugs based on how his kidney is actually functioning. He received 50% of both Carboplatin and Etoposide last time and, I think, he is receiving 75% of Etoposide and Cyclophosphamide (Cytoxan). If that is incorrect, I'll correct that information in a subsequent post.

The doctor blew a kiss to The Boy, who returned it happily. The Boy's previous doctor would be jealous. We all liked her, except The Boy would give her the silent treatment until he was sure that she was going to send him home.

Saw an older episode of House last night in which a ridiculously rich man bankrupts himself while his child is dying in an effort to gain good karma, and it works--they figure out that the problem is curable and the child lives.

I'd give up anything I had to for the sake of my family.

Friday, January 15, 2010

Another year, perhaps?

The Boy is almost done with chemo #15. That means that we are over halfway through the regimen, having completed half of the chemo and the radiation.

We have another year, give or take, probably more, until this treatment is done.

He has decided to take over the place, the playroom in particular.

It's still a long time. But we can do this.

Wednesday, January 13, 2010


Quick hits before bed, in no particular order:

The Boy was refusing his BiCitra, or violently rejecting it along with whatever he had recently eaten. Solution? Bicarb in the IV. Hello--we asked for that for months. He has more issues with the stuff at the hospital but will generally take it at home. Background on that is, either the BiCitra oral solution or some form of bicarbonate supplement can be used to combat acidity in the blood. Acidity in the blood is a by-product of the kidney problems.

Speaking of kidney problems, The Boy had a renal function test called a GFR. Forget what it stands for but let's be honest--those who know about kidney function tests already know what I am talking about, those who don't are just going to read on, and some of you are going to Google it. Anyhow, his number was 54. Above 90 is normal. So he has "moderate" kidney problems. 30 means see the doctor, and 15 means you'd better have seen the doc because that kidney has checked the heck out.

I went to an info session for substitute teaching in the city school district here. Lesson learned--take the city bus next time. Door to door without the hassle of parking. Good money and likely decent availability of jobs. Good way to get noticed, too.

Meatball--still cute. He is enjoying his food. So far, he has has broccoli, cucumber, green beans, and banana. Sweet potato was supposed to be today but it took too long, so he will have that with breakfast. No teeth yet, though.

It is lonely without Musical Daddy. He has assumed all overnight responsibility for The Boy in the hospital while my mother recovers from some things. Non-contagious things like extra reflux and arthritis. I think he is enjoying the Boy time. We just have to be sure that he gets breaks. And that, maybe, we see each other.

My parents and he and I are really trying to take care of each other. It is nice.

Sunday, January 10, 2010


The reason why we have cake, obviously, is because David got another "NED" (no evidence of disease) by way of intrasurgical ultrasound--an NED that is quite conclusive and one that we're so fortunate to have received. Usually an NED is obtained by way of clear CT or PET scans, or by way of MRIs or ultrasounds...basically by way of imaging from outside. Not that we really want The Boy to be opened up on a regular basis, but while they were going after a lesion that was barely there and was comprised of scar tissue, and he was open, they figured, why not run the intrasurgical ultrasound over the kidney and liver and check for things that aren't kidney and liver, namely, new tumors? Hopefully we'll never get an NED that is THAT conclusive, as we're hoping just to have regularly scheduled scans and ultrasounds that give us the information that we need.

The conversation that Musical Daddy and I had regarding this surgery and The Boy's recovery was that it would be easy, by comparison, for him to recover from this one as compared to the other two, and he was right. His surgery was less involved this time than the other times. In fact, his recovery was cake. And I said, after this discussion, "I want cake." So now we have one.

The other "cake" is the fact that we "only" need to go back to the familiar chemo regimen. We have 4 more maintenance phases left. 16 chemo cycles. Technically only 48 weeks from tomorrow, although with delays from fevers or longer recovery times, who knows how long it will take?

Still, I certainly enjoy some good cake.

Thursday, January 7, 2010

I missed you--you're back!!

Today when I arrived at the hospital (after inching my way through delayed rush hour and morning traffic), I was pleased as punch to see The Boy sitting up in bed and playing with his puzzle. Musical Daddy reported that while The Boy did throw up last night after his pain medication, he hadn't had pain medication in 12 hours. And he had none while I was there. He looked wonderful.

He still hasn't had much to drink and hadn't eaten anything but Pez. He ate fruit ice, about an ounce, for lunch. The surgeon came in to see The Boy and talk a bit about our wonderful news. Thing is, he said to us before the surgery that he never likes to guess what spots or growths or tumors are when he operates. But then he gave us the description of what he found, and added that he had used the intrasurgical ultrasound (not sure if that's what it is called) during the procedure and everything was clear.

The Boy had been asking me for a cheese sandwich today. He wasn't on food yet, just clears, so of course I offered him fruit ice instead, which was fine for him. While the surgeon was talking to us, I was getting ready to leave (shift switch, you know...) and I grabbed a cookie. David said that he wanted one ("want one"), and I asked the surgeon, who said that it was fine. Hopefully, eating the cookie means one more step in the direction of home. He said that possibly we'd have him home tomorrow.
Scar tissue. Adhesions. The results that we got are the types of results that we had hoped for, but that doesn't even describe it. We got the answer that people look for when they are expecting bad news and they KNOW that they're getting bad news, but they make up this Hail-Mary long-shot best-case scenario that has very little chance of coming true. We got that. Last play, the clock runs out after the snap, and the QB throws 30 yards for the touchdown.

Hey, I'll say it:

We got our Michigan State second.

Wednesday, January 6, 2010

Path report in! No new tumor!

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Tuesday, January 5, 2010

Holding pattern, somewhat silly

The Boy is sleepy and uncomfortable. He was also given an extra pain med. He asked to sit up and feels comfortable doing so but is falling asleep sitting up.

Yet, he refused to lie down until just now. It was somewhat comical.

Recovery time

Already there is quite a bit of recovery progress. When The Boy came out of surgery and we met him in the PACU (post-anesthesia care unit), he had no NG tube, only blow-by oxygen, and he looked...good. The next few hours in the surgical recovery room were a bit rough as they tweaked his medicine. He has an epidural and received a bit of Dilaudid (pain med) overnight. In the epidural is ropivacaine and clonidine. Since The Boy took clonidine for blood pressure before, it is not surprising that his blood pressure is low with that med being infused into his spine.

The Boy tried juice overnight, but it came back this morning. Diet-wise, he is permitted to try clears, but the nurse said that she didn't hear too much in terms of bowel sounds. Maybe he was waking up a bit in there, but slowly.

He may be discharged before the end of the week.

As for my own recovery...we were taken to some mighty dark places leading up to this surgery, and to (possibly) receive the best news ever is such a blessing to us. It is likely that The Boy will continue his treatment as before but we haven't heard that officially. But hey--we'll take it.

Monday, January 4, 2010

Finally, a victory (we think)!!

The surgeon went in, cleaned up a bunch of scar tissue/adhesions, went to the spot in question, and...

Nothing of interest was there.

Ultrasound in surgery, over the liver, over the kidney...all clear.

They still sent a little piece to pathology, but there was nothing that resembled more tumor.

In terms of best-case scenarios, this was it.

Still waiting on pathology reports, so we are cautiously excited but...

Holy crap we actually won one.

Coming out

The surgery went fine and they are finishing up now. We don't know exactly how he is, but getting through the surgery itself is a big deal. Probably an hour or so until we see him.

Surgery in a few hours

The Boy is having his surgery soon. I woke up to feed Meatball (who had been sleeping through for the past 3 nights, but I guess he changed his mind) and couldn't get back to sleep. So here I am.

It may seem like more of the same...this kid is going into the hospital AGAIN; so what? This is different, though. This isn't just another scheduled treatment or unscheduled fever visit that is to be expected. This is surgery to remove a new spot on his liver which REALLY shouldn't be there.

An ultrasound before the surgery will confirm that the lesion on his liver is, in fact, still there. It may have disappeared, but I'm not banking on it.

We don't know what will come next. We don't know if this is more cancer or if it is an infection or just some sort of other irregularity. If it is more cancer, we don't know what direction his treatment will take. The doctors have already been looking for the next treatment option.

I don't know what I feel anymore. In some respects I envy my husband, who actually still has emotions left. He feels everything more strongly and always has. He is sensitive and caring, and he is a world-class father to our boys. The Boy and he have such a connection, and he and my mother will be the ones to pull him through this, as they always do. Due to my obligations with Meatball, I'm generally the third starter in the rotation, but fortunately we have Aunt Jeanne here to help with Meatball. I don't know how to fit her into the baseball analogy so I'll just call that off. Anyhow, it did feel nice to snuggle with The Boy last night. It's rare that he actually allows it, but Daddy and Grandma weren't there at the moment so he put up with me.

I'm definitely glad that we are here in Pittsburgh for all of this. It would be impossible in so many ways if we were not. It may have been difficult for other people, our move here, but guess what--it's about us. It's about our family and what we need is to be here, with my family and the network of people here. Oh yea, and the world-class Children's Hospital.

I don't have much else to say...just keep praying, I guess.

Sunday, January 3, 2010

To the family with the CHICKEN POX at the library:

Please read the attached post by The Musical Daddy.

Let me extend this sentiment by saying to this mother: yes, I get that it's probably hard to be in the house with 4 children, 3 of whom visibly have the chicken pox. You've probably had a crappy week or two in your confinement and have been desperate for an outing.

Well guess what, you insensitive clod--particularly in today's culture of germophobia, you're really not welcome in a place such as the library, particularly when your oldest child hasn't learned the basic art of NOT coughing all over everything and then touching stuff. I'm not always a fan of the germophobia but it has caused people to be more hygiene-sensitive and it couldn't have come at a better time for our family. So while you may think that chicken pox is just an ordinary childhood disease and if people get it, oh well, it can be a BIG problem for some people.

And if you've been confined to the house for a little while, I suppose that in your world this is a big problem, and by the looks of it someone probably spent Christmas or at least New Years in the itch zone. I guess there's no way to make you understand that it's because of people like you that I have to keep my child in the house almost all of the time.

Musical Daddy, in his post, said that you suck. I'll echo that sentiment and add that I hope you are blessed never to understand exactly how much you ruined our afternoon.

Friday, January 1, 2010

2009: From point A to point B and down from there

The Year In Medicine.

The first 4.5 months of 2009 were really not that bad in terms of The Boy's treatments. I had just left my job (in the hopes of returning; obviously that isn't happening) and was home with The Boy. And by "home" I mean I was at the treatment center twice a week and in every few weeks for chemo. Then we had a "break" for radiation, which was a break because we didn't spend nights in the hospital but not so much of a break because I had to get up at 4:30 AM for a week.

April 20th was when things began to go screwy and we were hospitalized with the first of three port infections. We spent 2 weeks in hospital with the port infection and C-Diff, were out for 2 days in which we had The Boy with a catheter and a pee bag so it isn't like we had any fun (and he was on more BP meds), then back in for chemo. Out for a bit, then back in for leg pain which turned out to have come from high potassium and more hypertension issues. Then more chemo. Then back in for the second port infection. Out in time for the Valerie Fund Walk. Back in for chemo. Then out for a bit.

The third port infection fever took place while I was in labor with Meatball, as you may recall. The arrival of Meatball really complicated things for The Boy, and for us.

But shame on the hospital for making me feel, at every turn, that my second son was a burden and not a blessing. And shame on everyone who did the same.

Side note: I would NEVER recommend that anyone have a baby in this hospital. The fact that I left the hospital still exclusively breastfeeding Meatball was a minor miracle.

Anyhow, we spent another two weeks in the hospital because The Boy's port needed to come out. The arrival of Meatball coupled with hospital policy meant either sneaking him around or just not seeing The Boy too much. Neither of which was very good.

The Boy was hospitalized again to be put on a new hypertension regimen and get his next chemo.

Fortunately, we got something of a reprieve once school started for Musical Daddy in terms of The Boy's overall health and we "only" had to go in for scheduled stuff, which was still quite frequently.

We also learned that The Boy had hearing loss from chemo.

We started planning our move at this point, not really knowing when it would happen but knowing that we'd have an easier time in a different location.

The beginning of November brought another infection, likely fungal, and not in the port. Over a week of fever, most of that spent in the ICU...and no Meatball allowed in the hospital at all. Super-fun, when you have to scramble to find help. Many people came through for us, but it was too tricky even so.

When the hospital told us that Meatball wasn't even allowed in the outpatient center, we decided to make the move for the kids and me the following week.

The new hospital here in Pittsburgh is truly excellent. Had I known about the type of treatment that we'd be getting here, I'd have wanted to move a long time ago just for that.

We were here for a week and then went in for The Boy to have chemo. The next week we learned that there was a "lesion" on his liver. On Monday, he will have it removed. It was supposed to be removed earlier, but The Boy had some sort of infection that, as per usual, came on VERY quickly. This was quite a frightening experience, as his temperature was ridiculously high, as was his heart rate. The doctors' notes described him as being in "septic shock" that night.

So now we go in for this surgery. While we feel very good about the care that he is receiving and the consideration that is being shown to our family...we're scared out of our minds.

The Year In Parents

Many bonus points to my father-in-law who stepped out of his comfort zone time and again this year in the interest of caring for The Boy. It was not an affront to his efforts that we had to leave. Looking at the bigger picture, it just made sense. Once he sees this new hospital, he'll be pleased with the care that The Boy is receiving.

Also quite a lot of credit to my father, being without my mother so much this year and still trying to keep things together in the house, which required a lot of repair as a result of a household incident. No, there isn't a great story behind it, so I won't bother.

My mother, however, has shown herself to be a world-class individual. Right from the beginning, she took on responsibility for The Boy and his care as if she were another parent. Did she have to do this? Certainly not. She was rewarded for her efforts by having The Boy love her that much as well.

Before Musical Daddy and I even realized it, my mother knew that we were in crisis, constantly. Despite our attempts to pretend that everything was fine and that bouts of normalcy were really what our lives were supposed to be like, my mother knew that the ordinary and "boring" things were actually rare treats. She provided help in such volumes before we even knew that we needed it.

Anyone who would question my mother's motives and would say that she has been anything but completely generous and compassionate...needs serious help. Really. Get your head examined if you think that my mother would go through as much as she has just for the sake of getting extra credit or monopolizing The Boy's time. I know that my mother isn't perfect. We didn't always have such a great relationship when I was younger. But now I not only have the benefit of her help but I also have an understanding of her efforts that most parents don't get from their kids when they are young.

My parents have now welcomed us into their home...and they come out ahead! They don't have to schlep out to help us, so they gain money and time.

The Year In Us.

Thankfully, Musical Daddy and I have each other. Once again, we give a lot of credit to my mother who spent so much time with us and with The Boy so that Musical Daddy and I could actually be in the same room as each other.

It's been a world class awful year. The only really good thing to happen to us has been Meatball. He is such a wonderful little guy. And even that, we struggled so much with him as a newborn. Everything else, while we've had our little victories, has been so colored with dismay.

2010...PLEASE be a better year.