Monday, November 30, 2009

All the right stuff!

I began today's activities by getting insurance for The Boy. In the state of Pennsylvania, a child with cancer is considered disabled and is eligible for medical assistance. One of our major concerns about the move--taken care of like THAT. We got a number, we'll be getting a card in the mail, and we gave the number to the person at the new hospital.

Yes, it meant spending some time at the welfare office. Oh well. That's what it's for.

As for The Boy's first appointment, we couldn't have asked for a better experience. Not entirely true--we did wait a bit longer than I would have liked once we were in the office, and it wasn't the same as the previous hospital where you'd check in and go play, get accessed and go play, see the doctor and go play...the only playing really happened in the waiting room. The Boy hadn't had a nap, so he spent most of the time snuggling with Grandma. We may need books/toys; we definitely need EMLA cream. Likely less waiting.

The nurses seem to be the same types of nurses that we've seen at our other hospital. Same sweet manner with the kids, some with the same slightly cheeky attitudes that we love in our favorite nurses.

There are more doctors. Quite a few more. Also, there are generally several residents/med students/interns involved. The Boy has a doctor whom he will see most of the time. We really liked him! He asked all of the right questions and was interested in caring for The Boy as a person and us as a family. Also, he has an iPhone.

We clicked pretty well with The Boy's primary oncologist in NJ. It seems as though we will have a great relationship with this doctor as well.

Added bonus? Meatball IS allowed to be there. This makes it easier for simple stuff like count checks.

Speaking of count checks, they do have a lab right there. CBC comes back in a matter of minutes.

The oncology unit is self-contained, with both inpatient and outpatient areas in the same place. Nice thing about that is, no matter what he is coming in to do (definitely if it is scheduled, not sure about the 3:30 AM fever stuff), he goes to the same check-in area and has his port accessed by the same people each time. Also, with there being a dedicated oncology floor, they have a lot of little things that we always wished for in our old hospital.

It is likely that chemo will be starting on Wednesday. The Boy's counts were fine for chemo, and they really want to get him back on track.

As far as distance from the hospital, it is 15 minutes in rush hour from the hospital to the house. Likely less in the middle of the day or late at night. Parking is also less of a production than at the old hospital and DEFINITELY less of a problem than in Philadelphia, and as long as The Boy is on treatment, our parking is free. All we do is exchange tickets at the desk. Also, we could very easily just drive up and drop off.

I was nervous, to tell the truth. I didn't want another large hospital experience like the one in Philadelphia. I don't think we'll get that. In fact, I think we'll be very happy.

All the right stuff

Sunday, November 29, 2009

The New Way

It still feels like I'm here on a visit, but we're slowly getting acclimated. My parents are great with the kids, as is my sister who lives here. She is getting her own place in January (although I didn't want to kick her out, she said that she'd like to have a place of her own where she won't get distracted by wanting to play with my kids). It is nice to be here with a larger group of people so that I don't feel quite so isolated.

But I miss my husband. He is back at the house (he doesn't even want to call it home, nor do I, although we still own the place), and when I talked to him, he said that he'd be getting to work right away on the prep work for the sale. It is unlikely that I'll be able to see him before December 26 or so, as he has work and a Christmas gig, and he can't miss work at all, nor can he miss Sundays at St. Peters. We are considering taking a trip back for the Valerie Fund Holiday Party, which is a wonderful time, but I doubt that The Boy will really be able to make such a trip. Who knows, though? It is SUCH a great time, and last year he enjoyed it a bit although he didn't necessarily get it. This year he'd have even more fun, and he deserves to have a great time. And, even more importantly, Daddy deserves to see him having a great time.

We'll webchat frequently. We'll talk on the phone, although The Boy still doesn't really do that yet. Maybe now would be a good time to learn.

Tomorrow we're going to get insurance stuff taken care of, and then The Boy has his first appointment at the new place. Meanwhile, Aunt Jeanne is coming to watch Meatball. It's much easier to drive 45 minutes instead of 7 hours.

Speaking of Meatball...gotta go.

Thursday, November 26, 2009

There's no place...

like home. It doesn't feel like home yet; it still feels like I'm visiting.

But I'm here.

Not only am I here, but we had Thanksgiving dinner. On Thanksgiving. It was truly a miracle, and we had so much for which to be thankful.

The Boy definitely likes it here, although the attention is just as important to him as the new space. We did explain that this would be his new home.

Not sure yet about Meatball's opinion. However, he likes the fact that right now, there are so many people who love him and are paying attention to him. I was glad to be able to say that Meatball likes anyone who will play with him. Tonight will be his first night sleeping in the crib, in the room with The Boy instead of with us, in a new house. Lots of changes.

I hope that Musical Daddy will be happy. I hope that I will be happy.

All I know is, Thanksgiving dinner was amazingly delicious. My sisters did nearly everything, as my mother was with us. We were all supposed to be back on time, but things get complicated.

Wednesday, November 25, 2009

Last night reflections

In the awesome news department, unless anything changes, The Boy will be released tomorrow morning! Yes, ladies and gentlemen, Thanksgiving in Pittsburgh with the whole family is still a possibility!

I always hedge things like that, just in case...lest I jinx anything.

Being released tomorrow morning is dependent on his remaining afebrile and the cultures remaining negative. Generally if something is going to grow, it grows in a hurry, and we haven't heard anything about them being positive. You know what I think? The Boy couldn't leave town without saying goodbye to his girlfriends, his favorite nurses in particular. Additionally, the child life specialists and music therapists are favorites of his.

Assuming that The Boy does get out tomorrow morning, tonight is likely my last night in this house. Forever. This house was our first house. We bought it. We got a good deal on it, although we had to spend several weeks working on it. It was about 2 weeks before it was even suitable for us to sleep here, as the previous owners had 4 dogs and 2 cats, and we had to clean up that mess (with respirator masks and hazard coveralls on). Ripping up the carpet was oodles of fun. Pulling up the staples was even more fun. My hands were sore for a month.

The house wasn't quite ready for Thanksgiving, thinking back to five years ago. It probably looked a lot like it does now, with some stuff in some places but most of it elsewhere. We did much of the moving ourselves although with all of that having been two lifetimes ago, I don't remember. I am certain that we got help from my father-in-law and brother-in-law. I can look at things in the house and remember...

This was our boys' first house. This was their first neighborhood. The Boy went to the comic book store before he even came home for the first time. Yes, my husband is a nerd. Story behind that was, we left the hospital at the same time as my father-in-law, who was coming to our house to videotape our arrival. He needed to be ahead of us in order to do that, so we stalled by stopping at the comic book store.

I like this neighborhood because so much is within walking distance--the drugstore, the library, the Quick Chek, the comic book store (I don't read comics although I would if I had the time, but the fact that the store is within walking distance meant that Daddy could take the boys for an outing).

We didn't have many friends in this neighborhood, though. One family for sure, but Musical Daddy already knew them from work. We socialized a bit with other families at the park, but for the most part, friends were elsewhere. Family isn't close by. Well, they are, but not close enough apparently. I do have a relative on my father's side who lives nearby that I should have kept up with more, but that was a failure on my part. I haven't had a teaching job that was close to home, where it was likely that many people from work would also live nearby (and in fact, very few people did).

There was such an outpouring of support from my colleagues and principal in my now former school district when The Boy was diagnosed, when The Boy was raising money for the walk-a-thon, and again at this time when it came time to move. I loved working with the people in that district, I will miss them tremendously. I felt as though I had great relationships with many other teachers and that my efforts to be a part of the school community, not just a part of the music faculty, really paid off. Additionally, I had amazing students. They were enthusiastic, intelligent, and willing to work. My colleague at the middle school had a discussion with me about the concept of music class being "fun" upon which I often reflect, and that is, sure, music class is fun. It's fun because you do the work and it is REWARDING to hear the fruits of your labors. It is fun to sound good and fun to cooperate with other people who sound good. This concept is one upon which he and I agreed, for sure, regardless of our opinions on various orchestral minutia.

I had a great time here in the barbershop community. I first got involved in barbershop as a spectator. FRED changed my life. That's a quartet, not a single guy, and no one in the quartet is actually named Fred. I participated in two quartets and a chorus (not all at once). I "represented" this area of the country as a spectator at two BHS international conventions. I participated in the regional Sweet Adelines contest in a chorus once and in a quartet twice. And anywhere I went, barbershop-wise, I could count on being able to find 3 other people to "do a tag" or sing a song. Perhaps once things settle down, I can do some of that again. I've been singing a lot of low stuff (like lullabies to my children in the guys' "lead" range), so maybe I can sing bass in a women's quartet. That's the part that I'd REALLY like to sing.

It is with a heavy heart that I leave here. I wish that we didn't have to do it if for no other reason than I hate moving. Joking aside, I am hoping that leaving this house and leaving this state brings us the change that we so desperately need. I desperately need it. I've had a successful career here, and of course I have my husband and my children whom I love, but just about everything else is a mess. And I get the feeling that I could easily take my career and plunk it somewhere else in the name of improving the rest of our lives.

So goodbye once again, Garden State. I'll come visit. But now my home is elsewhere.

Tuesday, November 24, 2009

Where we stand:

There is a big truck in our driveway. After Musical Daddy gets home from work, some movers are coming to help load it. He will drive the truck on Wednesday. Everyone will be driving on Wednesday. If it is 11PM or so when he gets near Harrisburg, he will stop there and crash with my aunt and uncle. Then on to Pittsburgh.

Currently, 9 AM Thanksgiving morning will be unloading time. If you'd like to help, let me know

From there, he will either drive my mom's car back here or, if The Boy is slated to get out Friday, he'll just stay there.

The Boy has had good temps. Some Tylenol brought it down and it stayed there despite him not having any more.

Meatball has been quite cooperative today. This evening he was fussy but fell asleep on my lap. I will probably sleep soon as well.

As usual, all we know is, we don't know.

Joining the "I hate Thanksgiving" club

Last year, we had Thanksgiving in the hospital as The Boy received his first chemo on the new protocol. Then we all got a stomach virus. This year, we were going to be in Pittsburgh...then we were going to MOVE to, things are all upside down. Not thrilled.

My sister doesn't like Thanksgiving. In 2005, when we had been in our house for about a year, I was thrilled and delighted to host Thanksgiving in our home. My entire family was in attendance. In the middle of the night, my sister had a seizure, thus beginning the process of diagnosing her as epileptic and investigating her vision issues, going from specialist to specialist and being on grand rounds. She now has things under control, but she still isn't wild about Thanksgiving. She is currently helping to engineer our move, even with the latest snag.

I like the idea of Thanksgiving--get the family together, cook a great meal, and watch football. It's just been a rather unfortunate holiday.
Tb is being admitted. No Thanksgiving for us.

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Boy in the er. 101 fever. Supposed to leave today.

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Sunday, November 22, 2009


If I seem to be rude, or short of patience, or in violation of various codes of etiquette, I apologize.

It's been hitting me over the past few days that my husband and I have been spending the last year pretending that our life is NOT a constant crisis. Pretending only works for so long.

Saturday, November 21, 2009

A Full Disclosure Blog Entry

Musical Daddy has written something similar, so now it's my turn.

We are packing it up, packing it in, selling the house, and moving to Pittsburgh. It's where my parents and a large chunk of my extended family currently reside.

I apologize for the fact that this information got out to a few groups of people to whom it wasn't really supposed to get out until later. The reason why it was supposed to stay under wraps, although many people were told, was that first the plan was "we're moving sometime soon--let's just get one of us a job." Then it became, "we're moving over Winter break--if we don't have a job by then, it will be easier to get one." So we figured that some situations would be made easier if people didn't know yet. Of course, then we had to ask for help, and the call for help was passed around. My fault for giving license.

The latest development, which happened on Wednesday, was that The Boy's treatment center issued forth the same policy that hospitals across the nation had issued for inpatients. Now it applies to outpatient treatment centers too--no children under the age of 18 who are not patients are permitted in the hospital. Obviously, this is to protect everyone from swine flu and other fun diseases, because my 4.5 month old baby who spends almost no time away from me OR his brother (who doesn't get out much, suffice it to say) is clearly a huge problem in this regard. Nevermind the fact that when The Boy was there on Thursday, he was playing with the other kids and sharing the same toys with them, and while some of them are on similar protocols, others are not. Some live the sort of isolated life that The Boy does; others go to school. Look, I do understand that children are notorious germ carriers, but the knee-jerk reaction here makes NO sense, at least for our family and other families whose kids don't come into contact with others that often.

My father-in-law is the only person with daytime availability that The Boy loves and trusts around here. It's not a shot at anyone else--my father-in-law has gone way outside of his comfort zone and has made such an extra effort with The Boy, and it's paid off with huge smiles and hugs, and lots of love. With him being ill and recovering from pneumonia, and travelling to see the family on the other side of the country, we're up a creek--w now require two people to care for the children on days when The Boy has his treatments, and there just isn't the availability. Last week, I left Meatball with a very nice "bubbe" (grandmother) who lives nearby. I had met her only once before, when she came to volunteer in the hospital. While we certainly appreciated the help and were lucky to have it, the fact that we have to scramble to find another person when initially my staying home from work was supposed to solve many of this problems makes it impossible. Furthermore, even though I send bottles with him, he'll take about 2 ounces over several hours and then reverse-cycle later in the day. Usually at night.

By comparison, my mother has daytime availability, she has friends and family who also have daytime availability and can come to the house, and the hospital being about 10 minutes away also makes things a lot easier.

My mother works part-time and with a relatively flexible schedule. She does 2 hours of private reading instruction in two different places. She does preparation work for her teaching, and she does various forms of educational consulting in addition. While the people for whom she works would rather have her for some of the time than anyone else even if they can be there more often (yes, my mother is that good), it is generally preferred that she be there. Furthermore, when she doesn't work, she doesn't get paid. Her dropping everything to come out here and shoulder much of the responsibility for The Boy's care means a loss of a few hundred dollars, plus whatever travel expenses she incurs.

Having said all that, it's important that I explain how much wonderful help we have had here. We have friends. We have a few wonderful organizations--Chai Lifeline, Bikor Cholim of Livingston, and St. Peter's Episcopal Church of Essex Fells--who have supplied people power (and food too!) to make it easier. We were glad that for a little while we were able to sneak Meatball into the inpatient area of the hospital. We even had a sweet security guard who would watch Meatball while we would switch places.

I don't want to say that the help that we have received hasn't been great and hasn't been enough for the situation as it formerly stood. The problem is that adding Meatball into the equation and THEN adding paranoid hospital policy (it's everywhere--they have something similar in Pittsburgh, I'm sure) means that we would require a revolving door of volunteers for even the simplest outpatient visit not to mention the inpatient stays, and it just can't work that way. Also, when Grandma isn't here, the ONLY person who can stay overnight with The Boy is Daddy (I'm home with Meatball overnight and he is still nursing at night), and it's really hard. We can't compromise on either child's nighttime care, but having a third person in the mix means a much easier time. And maybe Musical Daddy and me not having to spend weeks apart.

Professionally, we could both use a new start. While my job (from which I am technically still on leave) has been great in terms of the people and the support that we've gotten, the climate in the district is rapidly changing as an ever-increasing emphasis on test scores is forcing sacrifices in the arts departments. Yes, we know, story of everyone's lives. What I've seen in my time there is that the arts programs are such a draw, particularly for many students and families who could easily go elsewhere. Not only are they a positive outlet for students with issues, they also keep a lot a families in the public schools. Keeping successful students from going elsewhere is just as important to the test score bottom line as is bringing up the performance of students who struggle. I won't get into Musical Daddy's professional issues here. That's his prerogative.

The fact is, it is a very lonely life that I have led over the past year. Boo hoo. Musical Daddy has school, but he also goes up north three days a week for other work. Marching band season was particularly challenging--Tuesdays he'd leave the house at 7-ish and not come back until 11pm. We live just far enough away that it is apparently a major ordeal for family in state to visit us (I've seen my sister from Maryland more often). I don't live that close to where I was working. I have some friends, and even some friends with kids, but if The Boy isn't good to socialize, then we can't really go out to play. I had one thing that I could do on my own, which was go to orchestra rehearsal.

Oh well--my kids, my problem, right? Everyone else has issues too. Why should I get any special treatment?

Not everyone else has to spend this much time in the hospital. We need help that we can't get here. I need my mother. She "fixes all better." Apparently my mommy superpower is the ability to find things...useful, but not as good as fix-all-better.

And not that I haven't had some wonderful times here. But it's time to go. It was the right thing to do when we moved out here. And now it's the right thing to leave.

Friday, November 20, 2009

Depressive Paralysis

When multiple things happen in life that leave me either paralyzed from depression, shaking with rage, or both, it's a sign that a life change is in order.

Thursday, November 19, 2009

Not even close

Platelets at 37. Not even close for chemo. Maybe Monday? But not likely.


The Boy has not been given Pentamadine (his antibiotic to help prevent pneumonia) since August. He usually gets it while he gets chemo but...I don't know what happened.

So he is getting it soon, and we are waiting on counts.

Meatball should be fine where he is; I just wish it weren't this way. National policy, apparently.

Wednesday, November 18, 2009

thank goodness for some small favors, but not others

They didn't think it was flu when I went to the doctor today. They said that the fever would be higher and that I'd be feeling crappier, basically. They said that it's a sinus infection, as my forehead was tender to the touch. I'm getting some nasal spray (one of the ones that Musical Daddy already uses, funny enough) and some TamiFlu for "just in case."

Even so, it's just as well that Musical Daddy stayed home. If I get rest today, hopefully I'll be functioning better tomorrow.

We just learned that the hospital policy now prohibits any children who are not patients from being anywhere in the hospital other than lobbies. This includes outpatient centers. As in, bringing Meatball to The Boy's checkups, which happen at least twice a week, is no longer possible. What I'm wondering is, how many other parents of patients does that completely screw over? And what are they thinking? Do they really want the siblings to be placed elsewhere and potentially be exposed to MORE germs? I'm sure they're just trying to cover their behinds, but really--wouldn't it make a lot more sense for the baby to stay with his mother and NOT be around a bunch of other people?

Of course, when I woke up this morning feeling lousy, the first thing I thought was, that's what I get for making fun of the public reaction to "OH NOEZ! Teh Swine FLUUUUUZE!!!"

oh no...

I'm sick. I had a fever of 100.8 a little while ago.

When you run on empty for as long as I have, it catches up. Hopefully that's all it is. I'm going to the doctor as soon as Musical Daddy returns from a brief visit to school.

Tuesday, November 17, 2009

The right place

The Boy, when playing with the violin, understood that the chinrest goes under his chin. This is thanks to the Elmo's World violin segment, I'm sure.

So let's see...we went to a wedding on Sunday, which was lovely. The cocktail hour was out of this world with all the delicious things that they had to eat, and the meal served was equally delicious (although not as exciting only because the meal didn't involve me going back for seconds and thirds of the sushi!). It was great to see friends and actually enjoy ourselves for once.

In thinking over the friends that we have who are close to us, most of them are already married, so we don't end up attending a lot of weddings. It is odd that we've been to 2 of them in a relatively short period of time. In 2001 we attended several. I guess I also count the one in December of the previous year. Lotta people got hitched that year.

I've had an exhausting few days in which I was not in my house a lot, and there are plenty of things that need to be done. I'm still not entirely decompressed, so I will settle for sweeping the floors. Thanks to The Boy for wiping the table. He did. It was really nice of him. He grabbed a paper towel and started wiping, so I sprayed some vinegar and water on the table and he kept at it.

My father-in-law visited the hospital today. Or rather, he was in the ER today. Never a good thing...but I say "visited" because he didn't have to stay there overnight, at least as far as I've heard. He has had a cough that hasn't gotten better, and X-rays do indicate some pneumonia. But, they decided that some IV drugs and then some more drugs to take at home would serve him better than staying in the hospital (you know, there are sick people there...) and that observation was not necessary.

It is possible that they will admit The Boy on Friday for chemo. Yes, we did just get out of the hospital, and right back in we go. If that's the case, then Thanksgiving will likely be a low counts time for him. Really, when isn't it...? Plans are to go to my parents' house this year, in Pittsburgh. If The Boy has low counts, we will be very careful in our travels and limit visitors at the house.

About the count cycle: It used to be that right after chemo he'd be on a bit of a Neupogen high and maintain decent counts at least until the weekend after being discharged, at which point things would drop down. Now he's in the basement by day 3 or 4 post-chemo and maintain that well past day 10. Day 10 was when we were admitted for the whatever-the-heck he had, and he remained on Neupogen for 23 days total as a result, instead of the current trend of 12 or so. And it used to be 8 or 9. So basically, once he finally gets off Neupogen and he is on the Neupogen high again, he is fit to go out. But frequently, he isn't. So it's hard to do much because he can't really go anywhere with the exception of walks in the stroller, as long as we don't actually bring him around people.

Saturday, November 14, 2009

Happy birthday, Grandma!!! (and did I mention that my family is wonderful?!)

While my mother's birthday isn't until tomorrow, I mentioned that we did Friday night into Saturday in Atlantic City. It was our family vacation spot, and we had a lot of great memories there. Everywhere we went, we'd point to something and tell a story.

For example, the pushcarts (not rickshaws, because those are held differently, but the same concept where a guy is conveying you on foot and you sit) reminded us of the time when one of my sisters hurt her foot or was sore or something, and my brother put her on his back, and we walked home. I forgot about the part where my mom gave him money to take her back to the house on the jitney (basically the bus, but little-tiny), and he proposed that he'd pocket the money and carry her instead. A win-win situation.

Fishing on the boats was a fun thing that we did, just my father and brother and I, although we stopped doing that the year after my brother got seasick. It was his birthday too. It wasn't because he got seasick that we stopped going; it just never worked out for us to do it again.

The three of us would also ride bikes on the boardwalk.

We saw cheesy casino shows when we went as a family back then; we got a glimpse of that in the hotel lobby this afternoon. Meatball was entranced.

We didn't spend an inordinate amount of money on our family vacations (not that you can take 6 people anywhere and not spend a bunch of money). We did fun things, generally pretty simple things, most of which we could still do during this short visit. My sister and I walked on the sand this morning after visiting Lucy the Elephant. We LOVE the beach. We got some salt water taffy and some Swedish Fish for The Boy.

My mother had a wonderful time. None of us brought any drama with us. We all had fun, and she really relaxed, which was crucial after her giving her time to us, once again, to help with The Boy in the hospital. Problem is, with The Boy and Meatball, we require two people on "duty" all the time, and Musical Daddy has to go to work. Filling in the blanks with my father-in-law and, generally, other people that we barely know, can get us through, but with my mother, and then her friend, we were really able to share the responsibilities. Particularly since my father-in-law has a nasty cold that turned into a nasty infection, and while he is getting better, he really needs his time to recover. But anyhow, Grandma and "aunt" J to the rescue once again.

This afternoon my siblings and I went to the slots. My sisters and I had never gambled in the casino before and planned to spend about $20 each, just to see what we'd get. My sister Jessica and my brother didn't do all that well. I played $20 and ended up with $15. My sister Wendy, who played $20 and ended up with about $40, kicked me $5 to say that I broke even. Very sweet. I decided to play the $5 and while I won a bit more, I ended up losing that too. Still not a bad job.

But proof that we were really taught to care for each other: my sister Carla did about as well as Wendy, coming out with more than $20 but nothing impressive, so she decided to play a little more. Wouldn't you know that on her last bet of the extra money, she won $250. She went to cash out and immediately handed me $100.

She also handed $20 each to our other sisters and my brother. No one told her to, no one asked her to, and she could have easily just kept it for herself and no one would have said boo about it. Instead, she decided that she would kick me some money to make us feel better.

To clarify, though, it's not that money itself made me happy. It's the fact that my sister gave it to me without even thinking twice.

Wendy was in charge of pictures. She does an amazing job, whenever she is at an event, to make sure that comprehensive photographs are taken and that everyone appears in enough of them.

My brother was a good sport. He has a reputation for being a stick-in-the-mud, but he always goes along with our shenanigans. Same with my father.

Today we sat down to lunch, and Meatball started to wake up and get upset. My father, without even being asked, takes him for a short walk in the stroller and returned with him cozy and sleeping, allowing us to have lunch without being concerned about Meatball's issues.

Meatball was great for the entire trip. A little short on sleep, but he was having so much fun. He loves to go go go.

The Boy would have liked a lot of it. We'd point out things that he would notice or enjoy. Musical Daddy would have also had a great time. We missed them.

I want to reiterate how grateful I am to Musical Daddy for letting me go. It sounds almost unfair, for me, my mother, and Meatball to have packed up and went on that trip. My mother needed this, though. And she needed me to be there. Not to mention, Meatball needed a bunch of people to fuss over him. Doesn't happen as often as you might think. But anyhow, lest anyone say that I am selfish and flaky for going on this trip right after The Boy had gotten out of the hospital, particularly since he was unable to go, I had complete confidence in my husband's ability to care for The Boy, and he did not disappoint. Furthermore, The Boy took good care of Musical Daddy, making sure that he took naps and got caught up on his rest.

Tomorrow, we are going to a good friend's wedding. We have two extremely capable babysitters in Grandma and her friend. Some other possible plans over the next few days...we shall see.

Friday, November 13, 2009

The Boy is HOME!! But I'm not!

This weekend it's my mom's birthday. A big one. She looks fantastic.

The plan for awhile was to spend 2 days in Atlantic City. Unfortunately, The Boy's hospitalization made for a tricky time of it. Thank goodness for Musical Daddy--he insisted that I go. And take Meatball, of course. Meatball is still portable.

Backing up a took them quite awhile to let us know that we were leaving the hospital. I went to the hospital in the morning to help organize, because regardless of departure date, we needed to get organized. I left Meatball at home with our friend who came BACK for the weekend in order to accommodate the trip for Grandma's birthday. I spent time in the late morning into the afternoon. The Boy was charming and sweet.

The nurse that we had today was one that The Boy had once or twice before, which is not much, considering how often he is in the hospital. Meatball had her when he was readmitted for jaundice, and she was the one with whom I had this conversation:

Nurse: so you're breastfeeding...are you also supplementing?
Me: No, definitely not.
Nurse: oh...then I guess you'll be here for a long time then, if you're not going to supplement.

No, thank you, it does not make me a bad person for thinking that formula made from cow's milk and chemicals is acceptable when I'm a human mother who can make human milk.

This nurse is not an innately mean person, bright or not--she's one of those people who talks down to everyone, like an old-fashioned grade school teacher.

Anyhow, it took Grandma and me forever to get out and on the road. The traffic was insane on the way from the hospital to my house, as everyone was getting out of school. While we were at home, we got word that The Boy was indeed being discharged. He was okay in the white count department and received platelets this morning. Hemoglobin was also good...for now.

It makes me feel great that The Boy is home and can take care of Musical Daddy. Make him rest, you know. Boy therapy.

So Grandma, Meatball, and I drove down. It took us about 2 and a half hours, all told. Meatball was fed before we left and slept the whole time. Travelling with a baby this age is VERY easy. All I had to bring was some clothing, diapers, stroller/carseat, and the carrier. He has finally gotten into sleeping in the car, and he did a great job today.

When we arrived, my father and two of my sisters were there, and we had some snacks. We just hung out and talked. Naturally, everyone wanted to spend time with Meatball. He's very sweet. My brother and my other sister arrived at the Italian restaurant, where we had dinner.

I missed The Boy because he'd be very excited to see the noodles. And I missed Musical Daddy because he's my husband and I love him, and I've barely seen him for a week and a half.

Casinos in AC aren't entirely non-smoking, which is odd to us because other indoor places in this state do not permit smoking. So some of the areas of the hotel/casino that we walked by were rather smoky.

Sometime tomorrow, I'm going to take $10 in quarters to the slots. If I win something, I'll set it aside and not "reinvest" it. Whatever I have left after spending the $10, I "won" and I'll be happy about it.

We'll be home tomorrow by about dinnertime. Then tomorrow afternoon, Musical Daddy and I are going to a wedding of a very good friend. Should be fun.

Thursday, November 12, 2009

Maybe maybe...

No ANC yesterday, but he had enough whites for a differential. Today, more whites. Maybe an ANC? Maybe getting out tomorrow?

Not crying over spilled milk

Pumped into bag, dropped the bag.

Not cool.

But I have plenty more.

Continuing to look up

He is up and playing, had juice and a bit of cereal. No fever overnight, no problems with BP.

Watching ABC's (All-Star Alphabet) for the billionth time.

We are waiting on news of the latest CBC. Then...? We shall see.

Grandma was feeling awful yesterday (not contagious; don't want to broadcast my mom's medical issues) so I missed rehearsal to care for her. She is feeling better and is currently watching Meatball at home.

Wednesday, November 11, 2009

If you are out of town and need a prescription filled, the proper thing to do is to go to the pharmacy and have them cal

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It's...the morning report!

Still holding steady with The Boy's forward progress. I just talked with Grandma as The Boy's nurse was taking vital signs. Temperature was once again normal, blood pressure was pretty good, and we haven't seen any food return in awhile. More importantly, he has actually wanted to eat, which is even better.

He wanted to eat before, but his stomach wasn't ready. Yesterday was a really good day, meal-wise. If you like meat. Meat meat meat.

Meatball decided, once again, that 5:30 AM was wakeup time. If Musical Daddy wasn't getting home so late (and I try to stay up to talk to him on the phone and keep him awake as he drives home, and actually see him when he arrives as well), I'd consider using that 5:30 AM wakeup time to exercise or something similarly productive and rewarding. Perhaps, soon, I'll be able to do that. As it is, Meatball is content if I remove him from the bedroom and sit with him. I can doze a little bit, at least, and not worry that Meatball's scintillating conversation will wake his father.

He fell asleep in his blue rocking chair as I was taking my shower. Stinker.

Today I have laundry to do and a bit of household stuff. I need to pick up a prescription for my mother as well.

It's a real drag that I don't get to spend as much time with The Boy due to the fact that Meatball needs to be kept away from him, and I need to care for Meatball. I don't want either child to infect the other with whatever he has. Meatball has been coughing, so it's particularly important to keep them apart. My mother has been amazing as per usual this week, and my father-in-law was similarly amazing last week, although he now has a nasty cold that turned into an infection of sorts. Of course, Musical Daddy takes such great care of our boy. He is rather lucky in that respect--a starting rotation of Musical Daddy, Grandma, Grandpa (Musical Daddy's father), and me (particularly out of the hospital), makes for a pretty good pitching staff team.

Tuesday, November 10, 2009

and the band played on...

Still the same, which in this case is good news.

Musical Daddy reports that The Boy was very two this evening. Grandma reports that
Musical Daddy had a lot of giggling silly fun.

He was eating almost normally today (if you consider roast beef for breakfast to be normal). I asked the nurse about the type of day that he has been having, and it was a good one. She did mention a poo blowout in the morning.

What? Just one? That IS a good day.

Good call on the part of the doctor to start anti-fungal. She said it doesn't work all that fast, but I took Diflucan for thrush and felt it working pretty quickly.

Of course, no word on departure date. Hoping that it is soon. I'd like to be able to spend the time with my family this weekend for my mom's 60th birthday. Might require some creativity with people; definitely will be made easier by the pending arrival of our good friend from near Pittsburgh, who was my mother's roomie in college. She is just the sweetest person. And she loves the boys to bits. Did I mention that she was just here last week?

Getting somewhere, maybe

Musical Daddy was wondering about today's CBC and wondering why they have been so reticent to give them to us.

My feeling is, they just forget when we ask them, because getting the CBC requires that they sit down at the computer and look it up.Of course, as luck would have it, they didn't do one this morning. The doctor has no idea why. So they'll do one soon and let us know. Obviously the hemoglobin and platelets will have gone up, because he got both of them yesterday.

He looks better. He is acting like he feels better. For breakfast, he had roast beef and mustard; for lunch, tuna and wheat bread.

Just got a good update from the doctor. She said that she wants him to have had 7-10 days of Cefepime, because of the sore that he had which tested positive for Gram Negative and E. Coli (by the way, did you know that they make Neupogen out of E. Coli? Says so on the box), and she wants to see his white count back up. By the time the white count is back up, he should have already had enough of it to be able to leave.

She also started him on Diflucan last night, which is an anti-fungal. I know, because I took it for thrush. She suspected that there was something else going on. She also doesn't really agree that he has C-Diff based on his poo, but keeping him on the C-Diff medication, particularly while he is eating and keeping the stuff away, will help prevent it.

Will we be out by this weekend? We don't know. The doctor says that it is certainly possible. Of course, after that, we get to figure out what we're doing for his next chemo. Get him all better and then give him some more chemo. Good times.

Monday, November 9, 2009

Still no change...

He is going to get blood and platelets today. His hemoglobin dropped from 7-something to 6-something in a day, and he only just got platelets on Thursday. His white count is .2, was .4 yesterday, was .2 the day basically nothing.

Still with the fever. Grandma came last night and ended up staying with The Boy, and she said that his temp got pretty high. They did the usual thing, with more cultures.

This now makes three antibiotics (Cefepime, Vancomycin, Flagyl) that are doing nothing for him, making him sicker, and maybe possibly are fighting off other things.

It's just a holding pattern. Everything just keeps on going the same way. And again, still within the realm of normal for the oncology team. Not only that, but we know that other kids have it worse.

Doesn't mean that it isn't unfair to The Boy. Also doesn't mean that we don't have the right to get angry about people that don't get it and expect us to cater to them.

Sunday, November 8, 2009

How does that not drive you crazy?

I feel for the oncology team, I do. The universal strategy for dealing with fever and possible infection in immune-compromised patients is to hit it with the strongest stuff they make until they know what is really wrong. Such treatment generally causes other complications in the patient, as evidenced by The Boy's experience. This time, even though the problem likely stems from the sore which had gram negative and E.Coli positive cultures, we have had most of the antibiotic complications that we know of...and the fever isn't even gone! The sore itself caused the fever and temporarily low blood pressure. The antibiotics can be credited for the diarrhea and accompanying bum rash. The diarrhea and stomach pain have caused the doctor to suspect C. Diff even though the cultures for that have come back negative. Oh, and in his mouth is a bit of thrush.

A bit of insight into what else sucks about cancer.

On the upswing?

When I arrived, The Boy was in his high chair drinking coffee and eating cereal.

Yes, coffee.

Amazingly enough, it stayed down. Even after I fought him to take his BiCitra.

He doesn't feel so warm to me right now, so maybe the fever is finally going away.

He seems to be settling back in bed, the first time since I got here--another good sign. He had been either playing on his mat or eating.

As he rests, I'll sit down to pump. Not sure if Meatball actually took a bottle today. I think I will pump and then call.

Saturday, November 7, 2009

A refresher from the big dog doctor

The Boy is being treated for anything and everything. It is making life very uncomfortable for him. It is darned difficult for us. They are going to start giving an antibiotic by mouth, to treat more of what might be there. Or not.

Unfortunately, this is, indeed, routine.

The fever isn't going away. While this is a problem, the doctor is not really worried. The issue is that we, the parents, are thinking that if we find one problem, it gets solved. Like those infections last Spring. Although the first one did result in C-Diff as well.

What it comes down to is, we are lucky. Or, we have been. We had a long streak of good health, and then a few bad months, and then a few good months. The doctor said that this type of experience is typical of pediatric oncology, just as much as the routine chemo and bloodwork. Fair enough...but it's awful for us.

More to the point, it is hard to swallow the fact that the rest of his treatment could be more like this than not. I barely spend any time with my husband. Just "hi" and "bye" and my children haven't been together in almost a week.

Meatball is at home and is barely eating. He has had 2 ounces of milk since 9 AM. He is perfectly well but needs Mommy.

I need my Mommy too.

The Weekend Update (so far)

Musical Daddy reported that The Boy was feeling really crappy, not eating or drinking, and the fever was up. When I came to switch, The Boy was looking about the same as yesterday. He also ate some cookies and drank a bit of water and juice.

Maybe he was just showing off.

He is still resisting medicine. That's no fun.

No indication as to when he will get better and get out of here. My mother sent her good friend, who was her college roommate, for a few days. Now we have some friends and their little guy; they are at our house with Meatball. Daddy is with the marching band.

Grandma is coming tomorrow night. She is amazing.

Friday, November 6, 2009

Holding pattern...

Still in stepdown; fever is back. Raging bum rash. Not really eating.

And how was your weekend?
We moved to stepdown from ICU just before lunchtime. He is still tired and mildly feverish, but his lungs are clear and

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Being moved out to stepdown!

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Thursday, November 5, 2009

Not moving

A chest X-Ray revealed some spots on his lungs. Maybe pneumonia. They said that these antibiotics he already is on will take care of it.

He is miserable and uncomfortable. And we are scared.

Everything comes down to poo

The spot on his scrotum is likely the answer. The spot was caused by Gram negative bacteria which can cause fever and lowering of the blood pressure. It is something that is caused by feces. Surprising that it hasn't happened before.

So we will move to stepdown, keep the spot as protected as we can, and wait for counts to come back up.

This is another reason for potty training, but it's hard to get The Boy on board with that logic.

He will likely spend more time bare-bummed around the house if possible. Except when he is chemo-toxic of course.

That's about it...good to have answers.

Let's see who the first person is who knows the origin of that title.

Movin' on down

Sometime today we will be returning to Step-Down, the special care unit where we spend most of our hospital time.

No word on what it will take for us to leave the hospital, but it seems like the longer we stay, the worse he gets. He is SO puffy. Yesterday he was at least trying to eat and drank quite a bit; today he has had nothing since I have been here.

He played for a bit, but after a painful diaper change, as they all are now, he was done.

I like today's ICU nurse. She is friendly, careful, and communicative. She is good with The Boy. No complaints. She rates in the middle of the nurses we know here who are mostly in Step Down; since most of them are awesome, that's good company.

Getting platelets soon. Even though we just got them on Monday.

Another morning...

Still here in PICU. White cells in the toilet, platelets too. Blood pressure meds are back, as his BP has climbed back up.

He is on both Vancomycin and Cefepime; lots of fun for him. No particular indication as to what the lesion is on his scrotum. And the fact that he has awful poo really doesn't help...gets in there. Daddy said that diaper changes are horrific.

He is puffy. He is going to get Diuril, which is his regular medicine. No Lasix, though. Not sure why, but I'm not the doctor.

I wish he would eat some yogurt. And rice.

Oh, and I wish he'd get better.

Wednesday, November 4, 2009

What a morning!!!

We got help for the morning; I still came in, and I'm sure glad I did.

BIG puke this morning. And the diarrhea from the antibiotic is starting.

Also, I discovered a sore on his scrotum while changing his diaper. Almost like a pimple. Now, what do they do to find out about sores?

Lance 'em.

Holy Toledo I haven't heard that type of screaming since this summer when they were stabbing and trying to find a vein, and that was on his arm.

Complicating matters was the poo in his diaper, which probably should have been taken care of BEFORE...but if wishes were horses...

Naturally he was hysterical and the bath that he required afterwards wasn't any help. We also had to stick some Mupirocin on there.

I am pleased that we have the greatest ICU nurse ever. She just thinks of everything and does everything and she is sweet to The Boy. Even when she has to torture him. Actually, it was the doctor who did it; had the nurse been the one, she would have cleaned him first.

His fever is gone and BP's are good. Waiting on the CBC results.

Tuesday, November 3, 2009


The Boy's diastolic pressures are now up into the 30's. For a normal kid they should be in the 50's or thereabouts. 40's wouldn't be so bad either.

I left Meatball at home with lovely friends so that I could spend the evening with The Boy. We were well-covered so that Musical Daddy could go to rehearsal at least for awhile. Also, my cousin spent a good chunk of time with us.

Meatball had some time where he was mad after I left. Then, he went to sleep and pretty much slept the whole time I was gone. Didn't have a bottle while I was gone either. I should pump...if he doesn't get up by the time I finish this blog, I will.

I moved his bassinet into The Boy's room to make it easier on our friends. Watch, the little stinker will sleep through the night in there.

No, probably not. I think I hear some little noises.

Or, false alarm.

The Boy received a blood transfusion (packed red cells). They took a CBC only to find that the transfusion had no effect. So they're giving him another one overnight and taking a CBC early in the morning.

More of the same...

So far, The Boy's culture is negative. That's good, because usually the culture grows right away (or it did the three times that he was admitted with fever before). Temperature is slightly elevated. Blood pressure is still low.

Just got word that our wonderful friend--my mom's college roommate so they go WAY back--is getting on a train and coming here tomorrow afternoon. She loves Meatball. She is also hard of hearing...hmm...does that mean that the people who like him are the people who can't hear him?

Actually, he makes lovely baby sounds.

And on the Meatball front...

He is napping and I have laundry going, and will be straightening around the house so...

He had his 4 month checkup (can you believe it?! already?!)

17 pounds 13 ounces (when he was weighed last he was 18 pounds and 0.4 ounces, but that was in clothes and a diaper, and the diapers themselves are 3 or 4 ounces). 27 inches tall. 43 cm head circumference. He is doing well. Doc said to be sure he gets on his tummy a lot and doesn't get a flat head. He has a little lopsidedness in the back. That's ok--soon he'll be rolling over and wanting to crawl :).

Two shots today; he got mad when he realized that he had been stuck but was nursed to comfort.

I told the pediatrician that we had Meatball's tongue tie clipped 2 months ago and that it changed our lives. He said that now he is starting to come around to having babies checked out for it, after hearing from me and a few other parents that it was such a positive change. Back in the day, they just used to clip all the babies' tongue ties right away. Then they stopped doing it. Now they are swinging back to a more moderate stance, where they will check for it if there is a problem. I'm glad that now he has that in his consciousness, so that if another mom approaches him with similar problems, he can check it out. Same for the La Leche League leaders--now they think about it too, when moms have problems like mine.

If it's all the same to everyone else, I'd rather not have to be the example for EVERYONE's medical issues but I guess if anything can be learned from my children, it's worth a shot.

Update on our friend Riley: they are heading to Chicago. They are going to try the stem-cell rescue treatment. If I'm not mistaken, it consists of a stem-cell harvesting from the patient, then high-dose chemo, followed by a transplant of those stem cells. It's an autologous transplant, meaning that it comes from the patient herself. I'm not sure if they ever use matching stem cells instead; if so, we're covered should, heaven forbid, The Boy ever need them.


The Boy is in the PICU being monitored because his blood pressure has been really low.

Possible that he was just given too much BP medicine. He kinda drooled out last night's dose, although not intentionally (he maliciously spits stuff when he's mad about it but he hasn't done that in awhile). Thus, he required a new dose.

Obviously he is off the BP medicines for now.

He hasn't really been peeing. They are pumping him full of fluids, and he will be getting blood today. Hopefully that will bring the pressure back up.

It's puzzling because every other time that he has been brought in, his BP is high. Usually he ends up on more medication as a result. The Vancomycin doesn't help either.

The doctors think that it's possible that it's just a neutropenic fever and he could get out in a few days. We have actually not had much experience with that, not since last year. It was after a transfusion, as is this. Who knows?
Being moved to ICU. Low BP.

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Monday, November 2, 2009

Well the good news is...

The Boy doesn't have the flu. They tested for that with a nose swab, which he LOVED I'm sure.

Musical Daddy is taking the day from school tomorrow because he is THAT worried. Usually even these hospitalizations are "routine" although truthfully, we've never tried to leave The Boy with anyone other than me, him, or my mom, for the first day or two of one of these.

He just called and said that The Boy is shivering. That's not promising.

If he has another port infection, I'm going to be ticked.

This is what happens when I leave the laundry out:

The Boy is going in for an emergency admission. 101 degree fever.

He got platelets today and this may be a reaction, although he hasn't had a reaction in a long time.

Lucky us.

If he has a port infection, I'm going to flip out.

Right now I am trying to figure out what's going on in regards to care for him and care for Meatball.

But I just took a few minutes and put away the dang laundry.


Meatball doesn't want to participate in family naptime. At least not with the whole family. His shenanigans make it impossible for Musical Daddy and The Boy to get any sleep. Just now, I tried feeding him which worked a bit but then he was done; he yelled as I rocked him in the easy chair and now is asleep in my lap.

Platelets today; blood tomorrow. Also a checkup for Meatball.

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Sunday, November 1, 2009

Body Beautiful...

I was looking at The Boy today, as I was changing him from PJs to clothes, and I took a second to observe his little body.

And I was reminded of Marge Simpson's description of Mr. Burns in the episode in which she painted him nude. Of course, everything can be made into a Simpsons reference, but this one isn't really a funny one.

Mr. Burns is REALLY old. And his body is frail and worn...and when Marge accidentally sees him naked, she puts that in her painting. A body that is weak belonging to a man who is so powerful. And a body that is old and used up.

Depending on how The Boy is positioned, you can see his ribs sticking out. He has a diagonal scar on his left side, a scar down the center of his abdomen, and an inch-wide scar on each side of his chest. His belly button doesn't really go in; it's just a wrinkle in the middle of his abdomen. It is affected somewhat by the scar running down the middle of his body.

When he is dressed, although there's no mistaking him for a cancer patient, he is an adorable little 2-year-old. And well-dressed, if I do say so myself. Without his clothing, his body looks a bit more like that of Mr. Burns. Frail, weak, scarred...

Certainly not the perfect, smooth skin of a little child.