Saturday, December 26, 2009


Today was our first official introduction of solid foods for Meatball. He is just short of 6 months, which is the age at which babies are supposed to be "clear" to start solid food, but he more than meets other criteria, such as the ability to sit unsupported and the ability to pick something up and put it in his mouth. Loss of the tongue thrust reflex as well, I'm assuming, although the fact that he is feeding himself means that it is left up to him.

I say "official" because on Thursday when I was eating a salad, he swiped a cucumber, and a few weeks ago he stole a carrot from my sister but was stopped before he could eat it.

He already knows how to handle a piece of steamed broccoli pretty well. He grabs hold of the thing and gums on it for awhile. If he gets little pieces in his mouth, he gnaws on those for awhile and spits out the parts he can't handle yet. Same goes for the cucumber.

At this point, he needs to be closely supervised, particularly in a restaurant high chair, but it's still a win over spoonfeeding and mush.

Thursday, December 24, 2009

the new sandbox

Borrowing the concept from Musical Daddy's entry on the nephrology consults, here are the changes in The Boy's medicine:

He is now on two anti-hypertensives and a diuretic instead of three hypertensives and a diuretic. He takes Isradipine (that's the correct spelling) three times a day, Enalapril/Vasotec two times a day, and Diuril in the morning. These are all small volumes of liquid, already mixed. The dose of the Enalapril is lower than it was a little while ago and is twice a day instead of once a day. The Isradipine is not as strong of a medicine as the Minoxidil. We'll monitor, of course, to be sure that his blood pressures stay okay.

He also will be taking less BiCitra, only twice a day, and they may even wean him from it entirely. Good thing, because he's not fond of it.

The big change, which may be temporary, or may not be, is the nebulizer. Breathing problems are another issue to be filed under "everybody has problems," and I am certain that many kids need them from time to time. For us, it's just another thing to add to the fun. For tomorrow and the next day, he gets it every 6 hours. After that, he is eligible for it every 4 hours when he is awake but only requires it twice a day unless he seems to need it more. He isn't fond of it. The treatment that we gave at 6 PM consisted of having to wake him up (since the thing doesn't work unless it is held vertically) and following his head around as he moved it around on Musical Daddy's shoulder. I would have said "rested" but resting implies stillness.

We can do this, just like we do anything else.

Next week should be the surgery to remove whatever is on his liver. It shouldn't be major but won't be just a simple in and out either. I hope that we are sent directly to the oncology floor after the surgery for his recovery, because we are already starting to "like" it there.

Getting going?

They're looking to release The Boy sometime today! They are sending him home with new meds and a nebulizer. Fun stuff.

We still have to wait a bit for everyone to sign off on his discharge, but since he hasn't had a fever and has been feeling better, they don't want to keep him.

Daddy and The Boy were in the playroom when he called me to let me know.

More info as it happens, but certainly the sooner we get out the better. My only concern, of course, is the biopsy that has yet to happen but it wasn't going to happen this week anyway.

Wednesday, December 23, 2009

Sleep is for the weak and change is for the better

Musical Daddy got CRAP sleep last night because people kept coming in to bug them. The Boy is getting breathing treatments every 4 hours, with CPT (chest physical therapy, I think) every 12. When I saw him this morning, he was much closer to normal even than yesterday. He was eating eggs and a bite or two of bagel with jelly, and thanks be to everything holy he decided to enjoy about 3 ounces of yogurt. That stuff might have a prayer of helping with the nasty diarrhea that he's still getting due to the antibiotics.

From the nephrology department: they decided to go ahead and play with The Boy's meds even though originally they weren't going to. That's fine--if they'd like to switch it up and try to get it right without using the strongest drug available, I'm all for it. More good news: they want him off the BiCitra if possible, or at least on a lower dosage. They may switch to a bicarbonate supplement instead, which is more difficult to dispense but is easier to tolerate. Considering that recently our attempts to give the BiCitra have caused screaming fits worse than vein-finding adventures or botched port accesses (not that we have experienced those things frequently but once is more than enough) have caused, I'm all for finding an alternate solution or at least cutting it down. My sentiment about this medication is that for the most part, his old team seemed to just up the dose and then leave it there without checking in to see if perhaps he did not require as much anymore. I'm glad to see that, particularly because he is a new patient, they are interested in seeing if perhaps there are better ways to get things done.

No major news about surgery to remove and biopsy the spot on the liver. Surgery sent a resident but that's the last I heard. This person said that The Boy's incisions looked good. Well, they should since most of them are over a year old. Musical Daddy's account of this exchange is much better than mine, as he was there.

I don't care too much about being "Home for Christmas." I have always had a strong affection for the holiday even though I am Jewish. The music is brilliant, and the displays are fun to see. Lately, though, the music has lost its luster for me, as has the holiday in general. I just don't care. My kids got presents every night of Hanukkah. My kids are being raised Jewish anyway. Were we still living close to my husband's family, I suppose we would have been included in their celebrations. As it is, we have a webchat date. I haven't listened to much holiday music even though usually I love it. I haven't actively been listening to music in general. I just turn my radio in the car to the classical station and enjoy whatever I happen to hear.

There are a lot of things for which I have lost my passion, and it is impossible to communicate that to others, particularly when I attempt to come across as a normal functioning human being. It is especially difficult for people to understand how hard things are when they don't even try and would prefer to judge from afar, and pass their sentiments along to others. But I digress.

My mother is at the hospital now. Musical Daddy is sleeping and will probably do so all day. I am waiting for Meatball to wake up so that I can feed him and then take him with me to spend most of the rest of the day with The Boy.

Tuesday, December 22, 2009

Switching it up a bit, kidney style

I just had a long conversation with one of the nephrologists. He'd like to switch things up for The Boy eventually in terms of his hypertension medications. The Minoxidil, which he has been taking since August, is really not a great thing to be on long-term. They'd like to try something different for him if they can. He said that maybe Minoxidil is the only thing that works but possibly they could try something different.

He also would like to switch him off of the Cozaar and back onto the Vasotec (Enalapril) because taking both can cause hyperkalemia (um...yea...we know that). For those who are not accustomed to speaking in medical terms, hyperkalemia means too much potassium in the blood. By the way, The Boy's potassium was a bit over 4 today, which is great.

The new drug to try will be Izradipine. Not sure if I spelled that right but in future posts I will have looked it up. It is in the same class as Amlodipine/Norvasc (which is the drug he was on after his initial diagnosis and surgery). It is also in the same class as ProCardia, which has been his rescue medication of choice. Izradipine is somewhere in the middle.

He said that they don't want to screw with things right away and certainly not while he is still recovering from something.

Although, with the Minoxidil having a reputation for being cardiotoxic, his 200-plus heart rates on Friday night and into Saturday probably didn't help.

So that's the update from the kidney department. More later.

Summary: The Boy looks very good and is getting back to normal.

Monday, December 21, 2009

Efficiency at its finest

The Boy's oncologist said that what he would like to see this week is The Boy's issues to resolve, the biopsy to be done, and for us to be out at the end of the week. That means that as long as we are here, we just go do it. They will transfuse platelets as needed, but they really need this biopsy to get done.

So do we.

The Boy has been better overall. He has been off and on with the fever, and the breathing issues are still there. The heartrate is a bit high for him but not ridiculous. He ate and drank a bit too. Playing with blocks got him out of bed, and listening to the music therapist was fun.

We have consistently enjoyed the new hospital because it is a children's hospital, and they try to keep the family in mind with everything they do. The brand new facility doesn't hurt either.

Sunday, December 20, 2009


We're not entirely sure what we're dealing with here. The cultures are coming back negative and the virus tests are too. The antibiotics aren't doing much for him in terms of getting his fever down. He is getting some respiratory therapies. The chest x-rays are relatively clear, but he has developed a wheeze and has a horrific cough. He's very uncomfortable.

What I'm not sure about is whether they tested for something fungal. I think that last time he was in the hospital for a long time, they started him on Diflucan and that seemed to clear things up. It took a LONG time for them to figure it out. We'll ask them tomorrow.

I guess we were thinking viral because of the cold/flu symptoms.

Nights at the hospital this time around are VERY hard because The Boy just isn't getting quality sleep.

I really didn't see him much today. I have difficulty dividing my time between my children, and it seems as though everyone is happier when Meatball is with me and The Boy has Daddy or Grandma, regardless of whether we're all together or not. Only problem is, I miss my Boy time. He's sweet and nice, and he's so much fun even when he is feeling crappy. He's such a character these days.

I was searching through a drawer full of photos in an effort to find baby pictures of me that look like Meatball. I also found my baby book. Apparently at 18 months I could sing my ABC's and Twinkle Twinkle, name all the Sesame Street characters, and count to 5. I will scan some of those old pictures so that we can compare. He really does look a LOT like me. The Boy does too, although he resembles Daddy so much. And Grandpa (on Daddy's side).

It's hard to believe that I'm getting tired already and it isn't even 10:30.

Saturday, December 19, 2009

On the upswing

The Boy is doing well. Better anyway. He was on special oxygen; now he is off entirely. His respiration and heart rates are improved although still higher than we like. Blood pressure is normal. Temperature is ok too.

The oncologist on the floor said that we will be moved up to oncology pending a decision from the PICU people.

Report from the source:

I am on the phone waiting to hear from the nurse. I was supposed to go to sleep but, surprise, I haven't been able to.

His heart rate and blood pressure are down, as is his temperature. The temp is still high but not ridiculous. 104 was the highest; it's about 101 now.

They had to put an IV in his foot. No fun. They also did a swab of his nose.

Now, they're sleeping in there. So I should be too.

Friday, December 18, 2009

Going up to ICU. This is NOT looking good.
Waiting in the ER for a room upstairs. This time, we are getting good ER  "service," and we wait for a room on the dedicated oncology floor.

He spilled juice on himself, which will necessitate a dressing change.

They are starting Vancomycin. Super. Nothing like restarting the diarrhea that we just stopped.

test-driving the new ER

Musical Daddy and The Boy left a little while ago because The Boy had a ridiculously high fever. As an added bonus, he threw up in the car as they were leaving on the brand new just-installed carseat. Not a big deal and not the worst thing that could happen, but still not fun. They switched cars and left me to clean up the mess. That also means that Meatball can't go anywhere until I can get the carseat cleaned or the cars switched.

Fortunately, everyone else is home now. I can go be with them or send someone else, either way they'll need food. Or, Daddy will need food anyway. Meatball, bless his little heart, is asleep. He was freaking out as we were getting out the door and I had to put him down. By the time I got to him, he had already fallen asleep.

So we'll see what happens THIS time around...

Wednesday, December 16, 2009

Striking the balance

Thanks be to everything holy--Daddy is home.

He arrived at about 11:15 PM yesterday. He brought in a few things, including the TV, and we actually got to talk. The Boy, having fallen asleep with Grandma, was moved into our bed.

It was difficult last night, because Meatball had bed privileges while Daddy wasn't here. He'd go to sleep in his crib, and then I'd get him for his next feeding and sometimes he'd stay there until he woke up again for his next feeding. And sometimes he wouldn't and I'd put him back in the crib. Sometimes he resettles on his own; sometimes he doesn't. It's very different, having him out of the room. I'm not wild about it, as he doesn't sleep through, but we're just going to deal for now. He is excellent about taking naps during the day, so that's fine.

The Boy, of course, was so attached to Grandma and has since reattached to Daddy upon his return. To the point where a fit was thrown when Daddy left for 30 minutes. And a fit was thrown when Daddy was moving things in on the truck. He just doesn't want Daddy to go ANYWHERE.

Still, The Boy couldn't care less for me. I've progressed from "the bad cop" to "persona non grata" which doesn't feel too good. I try not to take it too personally, but it does hurt a bit to hear, when The Boy is offered snuggles with Mom, an emphatic "NO!" and retreat to Grandma. Or, this evening, Daddy. I have made it a point after giving meds, and particularly after giving the Neupogen shot, to hug The Boy and let him know that I love him even though I have to give him medicine and shots.

But I guess it's just as well that I bear the brunt of his distaste. Someone has to, and I know that he loves me enough even though he needs to take it out on someone. He loves everyone else in the house and loves to be around them, and he is nice to his nurses and doctors as he gets used to them. He isn't destructive and he isn't terribly aggressive, although the fighting that he does when he doesn't want his medication has become more enthusiastic.

We had visitors this evening. We had a delicious meal, too. It was enjoyable, and The Boy had fun. He had ice cream with dinner; it was what he wanted. It was funny because there was no ice cream on the table, yet he insisted on it.

He was being very dramatic this evening about his medicines. Usually, he is cooperative, but since there were people here, he was showing off. I'm sure that the matter-of-fact way that we handled things were off-putting, but it's our life.

Tuesday, December 15, 2009

Counting the minutes...

I'd just as soon be in bed except that Musical Daddy is coming home!

Meatball went to bed at 7:30 and woke up at 10:45 to eat. I thought he'd want to stay up, but he definitely wanted to go back to bed.

The Boy fell asleep with Grandma. We won't worry about moving him until Daddy gets home.

Monday, December 14, 2009

Getting blood and platelets today

Got the call to come and get 'em. I knew that he would need them. I packed all kinds of things...but I forgot my dang phone. I do have the little laptop "L'il Wen" so I can still communicate.

I'm here by myself. Not fun. Grandma will come after work.

Sunday, December 13, 2009

An unwinding, much needed

This was supposed to post last night but never did. Here goes:

I actually put The Boy to bed in his very own Elmo bed today. It didn't go tremendously well.

The end result was a little guy lying in bed kinda curled up around the pillow with his bum in the air. How he got there, unfortunately, was about an hour of screaming for Grandma. I tried a few times to comfort him but short of lying there in bed with him until he falls asleep--another can of worms I'd rather not open--there was nothing that he wanted from me. No stories, no discussion of our day, and no songs.

Meatball, by the by, went right to sleep and slept through The Boy's theatrics.

I had mentioned in a previous entry that I was always stuck being the bad guy. Unfortunately, it has really become exaggerated over the past several days as The Boy hasn't been feeling as well and has been acting very two as a result...being grumpy, not wanting to agree to any clothing choice, that sort of stuff. My feeling is, he still needs to know that I'm the same person who holds him to the same standards while also allowing him a certain leeway while he isn't feeling so well. It's a fine line because I certainly don't want to be mean to the sick kid, but I prefer to plan for his future behavior and in doing so, I am assuming that he will have a future in which to behave.

Diaper changes have, unfortunately, been the bane of our existence. The Boy got a rash pretty early on this chemo cycle and while most of it has healed, there are still some sensitive spots. Poo problems, resulting in the condition we call "chemo butt" are typical, but he's had abnormal bowel movements for about a week. The doctor had us giving him Imodium and it seems to have had an effect, because he isn't pooping yellow goo every 3 hours anymore. We'll see how tonight goes, because every night this week has required at least one poopy diaper changing.

Speaking of diapers, I got quite the big score and replaced 12 of our BumGenius diapers with some aqua blue HuggaBuns size medium (the 2nd incarnation) at $5 each! We loved the BumGenius but after 2 years, the velcro is shot. We still have the new ones, and they still work the best for Meatball at night. I also got 2 of the new FuzziBunz 1 size in a cute baby blue color with a coupon. So more of our pocket dipes have snaps now.

The word on the house is that Musical Daddy and a wonderful crew of friends and family got just about everything DONE and the house will be in move-in condition when he leaves it on Tuesday. Possibly some little things might be done by the stagers.

His arrival here will hopefully restore some balance to The Boy. While he hasn't been crying too much for Daddy, he has done so, and I think he knows that a part of him is missing. The two of them are so very close. I don't worry, even though Musical Daddy might, that his time away from The Boy and Meatball has damaged their relationship. We have been able to webchat several times and it isn't as if all the time spent with them could be erased by a few weeks' absence. Meatball loves Daddy too--he has begun to associate Daddy time with giggles and tickles and being thrown around a bit. Daddy and his boys will pick right up where they left off.

We'll have a little crew here Wednesday afternoon to complete the move. Nothing is terrifically heavy that he and I can't just do ourselves but it is always easier to have more help. We'll hopefully be able to empty out the storage locker and not use it anymore, or at the very least be able to downgrade to a 5x10 or something like that.

My family has a LOT of stuff here in this house taking up a LOT of space...yes, they're pack rats, as am I, but the bigger problem is that they had a fire in the house not long before The Boy's relapse treatment began and my mother started making so many trips out to help us. She was managing the rebuilding of the house from far far away and just didn't have the energy to redistribute all the stuff once it came back from being cleaned. Hopefully our time here will actually be helpful to them in getting reorganized.

I keep saying it--she turned her life completely upside down for us. So did my father, as he was without my mother so frequently, and now he has us in his house. I think he likes the entertainment although I'd imagine that he is exhausted. Not only did they help care for our children, but they also made a HUGE contribution to my relationship with Musical Daddy. My mother would tell us to go out together or spend some time talking when The Boy was in the hospital, or even when he wasn't. The fact that she spent so many nights with The Boy also meant that Musical Daddy and I didn't have to be apart so much. The times when she wasn't with us and we had to take shifts staying overnight or, once Meatball was born, Musical Daddy would have to stay over every night...those times were really hard. If that was part of our norm, it would have been that much harder to keep our relationship strong.

We are fortunate, though, in that we are strong and we have handled our own interactions so well. I know that from my perspective, even if Musical Daddy and I have a disagreement, we talk it out and fix the problem. We checked our egos at the door long ago because we knew that the little stuff doesn't matter, and getting all worked up about the nitpicky stuff is why many relationships fail. The children keep us focused.

Tomorrow I go to the post office to send off some teaching stuff and to send the old BumGenius diapers, along with some prefolds, up to Canada. My friend up there said that she'd take a needle and thread to them, and she has THREE boys in diapers and could really use the extras.

Friday, December 11, 2009

Photo shoot of the boys

On Wednesday, after we already had gotten the phone call from the doctor, we kept an appointment that we had already made to get pictures taken of the boys. We already ordered a few prints and may decide on more. These are all of the shots.

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We picked this photo above of Meatball.

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I think we picked this one of The Boy

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We picked this one of both together.

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Thursday, December 10, 2009

Doctors' meeting results

We don't know much more than we did before. They did not reach a consensus about what the lesion is, whether it is tumor or a walled infection or whether it is something that is going to disappear. The doctors seemed to think it could be tumor; at least one radiologist thinks that it looked more like an infection. Regardless, here is the plan:

The Boy will go in for surgery once his counts recover. Before surgery, they will do an ultrasound to see if the lesion is, in fact, still there. The Boy had spots on his lungs in a scan done at the end of April that disappeared on the next scans, but those were from his cold that he had at the time. If the spot disappears, of course they will do no surgery. The surgeon indicated that it would be an easy procedure and may even be able to do it laparoscopically.

EDIT: since chemo would have been scheduled to start on December 23rd, that's probably when they'd shoot for surgery, if he has recovered by then. Or we could wait until after Christmas. No one wants to be in the hospital on Christmas, regardless of your religion.

Once they do surgery, they'll have it analyzed to see what it is.

If The Boy has more tumor growth, they will go on to find a new treatment for him, likely a Phase I Trial (a study of some kind).

On the same subject, The Boy has had awful poo all week. Stool cultures were negative, as was the C-Diff test. I asked about The Boy's liver function tests and if they had been done recently. The doctor said that his liver function was normal for his chemo protocol, but they'd draw another one with his next labs. It is possible that the poo is related to the liver issues.

What they did not say was that they are giving up.

Wednesday, December 9, 2009

Not the scans we were looking for

As Musical Daddy mentioned, the scans were not clear. Here's what is going on:

An ultrasound last Friday showed a spot on his liver. A "lesion." The scans were moved to now instead of after he recovered from chemo, as he is still on a brief Neupogen high right now.

Scans took place this morning, and the doctor saw them before radiology did a complete review. While radiology gives the final word on everything that they can see without actually performing a biopsy or surgically removing whatever it is, the doctor said that it is possibly more tumor.

Other possibilities are a walled infection or scar tissue that wasn't noticed before.

After the final word comes from radiology, The Boy's case is being presented at the Tumor Board tomorrow. This was supposed to happen anyway, but now they present him with new information.

Either way, we're probably looking at surgery in a few weeks.

I've been trying to keep myself occupied. My mom and I took the boys to get pictures taken. They were absolutely adorable. Meatball is such a camera hog. The Boy took awhile to warm up, but thanks to Grandma throwing a stuffed crayon around, we got some great shots of both kids.

I'll continue to update from here.

I want Musical Daddy to be with me. This is really hard without him. He's planning to come next week, bother everything else.

I responded to a Facebook post, something about what would you rather hear--"I love you" or "I got this." My response, true more now than ever, was "In our family, they mean the same thing."

Scans done

TOTALLY different experience with scans at the new hospital. First of all, they did have him do oral contrast and IV contrast. He was okay with the oral contrast, which was mixed in apple juice. Secondly, they did not sedate him!

The nurses and techs were very experienced. He was restrained, really wrapped up like a burrito, but they even approached that very gradually. They had a DVD going on a TV where he could see it (next time we'll bring whatever his current favorite happens to be). The room itself had a cute pirate decor. He wasn't thrilled, but I was right there with him the whole time wearing a radiation vest and holding his hand.

I find this approach to be a lot more honest.

We need to wait, now, for the results of the scan.

Also, I don't know how I get the results of yesterday's count check, so I'll have to drop an email to the doctor.

That's better

A few minutes after I posted, they brought new juice. Apple juice! He was much happier about that.

He has my iPod and is watching All-Star Alphabet. I have my sister's little laptop. She is here with me. It's nice to have her here.

CT procedure fail

Yes, they want him to drink the contrast. They mixed it in lemon crystal light. many 2-year-olds do you know that drink that?

They will hopefully figure something out. A new flavor, maybe. Or, they will drop an NG tube. I would really be unhappy with that.

Still "no."

Tuesday, December 8, 2009

Hem/Onc parents: know what would be really cool?

I thought of something yesterday. It would be really neat if every hem/onc patient's blood counts and other info were tracked online with a password-protected website, similar to the way that schools use online grading systems.

Sometimes we don't get counts back right away and have to wait, or in our rather fortunate case, the counts are done at home, but we don't get the results. Not only could we check results this way (or even have it email us when results are posted) but it might be helpful to be able to compare from one cycle to the next and have an easy reference for other things that happen.

Basically, what I am envisioning is an interface for all of this medical information...could even have a section for medications, recording blood pressures, and a way to generate relevant printouts to bring to other doctors or to give to school or caregivers.

Does this exist? I'd also imagine that some older kids might be interested in taking charge of their own medical information. If anyone has heard of something like what I'm envisioning, bounce it back to me.

big score!

Got 12 of the newer HuggaBuns dipes for $5 each. We need to replace some REALLY worn out BumGenius diapers.

The older HuggaBuns didn't have great PUL fabric (the lined stuff that makes it waterproof) but they improved it. Hope it works!!

Rotten Egg

I had to go pick up a medication for The Boy this morning. He is taking it before and after his scan. It smells like rotten eggs.

The recommendation is to mix it in Coca-Cola so that the patient won't taste/smell the rotten egg. So that's what I did. I put it in a shot glass that says "Drink Till She's Cute." Super mom indeed.

The nurse will be here in an hour to access The Boy's port and draw labs. I need to get his EMLA on soon. She will be showing us how to hook up The Boy to his hydration in preparation for his CT scan.

We have watched the Elmo/Baby Bear "Peter and the Wolf" 85342879086553754 times. Also, the DVD has a game where you have to listen to the instruments and name them. He nailed it. He can also say "orchestra." I love this kid.

Meatball is going through a growth spurt. Sleeping a lot and eating a lot.

Okay, The Boy just fell asleep on my lap. Stinker.

Monday, December 7, 2009

Scans coming up

The Boy is doing his scans on Wednesday--CT of chest, abdomen, and pelvis. Standard procedure, as he has reached the end of the second maintenance phase. "Only" 4 maintenance phases left.

Scanxiety is, of course, setting in, so we'll need lots of prayers! Thanks, everyone!

Sunday, December 6, 2009

Alone Time

If you are a working musician/music teacher with little kids, and you actually have any kind of time to practice, I commend you.

I've probably picked up my instrument on my own 3 times since Meatball was born. This doesn't count rehearsals, performances, or teaching. Before he was born, I didn't have much better luck. I'm embarrassed, and disappointed, as this is supposedly a big part of my livelihood. Granted, I haven't been working in the field in a year, but even so.

I am thrilled to report that today I got to practice AND exercise. Furthermore, my mother said that she would really like it if I could do that every day, that Musical Daddy should be allowed the same, and she'd try to make it happen. That's HUGE.

She really wants to make it a point that not only will the children be cared for by multiple people who love them, but WE also get to do more than we otherwise would be able to do. We were pretty well alone. I was REALLY alone. But not alone, because I always had the little ones.

My "alone time" to practice was amazing. I almost felt like a professional again. My exercise time was playing Wii Fit while Meatball sat around in his little chair. He gave me a good amount of time.

This afternoon, my mother went out shopping alone. She needed a break. The Boy has been glued to her most of the time, and every now and then she needs a rest. Before, she'd come and visit us in NJ, and then she would go home and miss him. Now I think she can understand how I can get touched out, between Meatball and The Boy.

I need to check my mother's work schedule so that we can plan our day. Most days during the week, she works two separate hours, and we do what we need to do for the family the rest of the time. Also, my father is going to Boston for a few days. My sister has finals coming up, so she's been spending a lot of time studying, but she will have dinner with us, help a bit with The Boy, and grab Meatball for hugs from time to time. I don't expect her to do much for me because she is very busy with school but she always comes through and she's great company as well.

I'm going to apply to substitute-teach in Pittsburgh for the rest of the year. I obviously won't make the money that I'd make teaching in a contracted position, but I don't really see one of those opening up mid-year. Also, if I have to decline on a day when The Boy has chemo...then that's what I have to do.

Time for meds and maybe even settling down for the night!

Saturday, December 5, 2009

Someone has to be the bad guy

There is a certain love affair that babies have with their mothers. Yes, they get that Daddy loves them and Grandma loves them and whomever else, but as babies, Mom is generally number one. In our family, The Boy was no exception as a baby. Sometimes he'd go through phases where he'd be more into Daddy, and this would happen more frequently because of the great relationship that they had and the fact that Daddy was home with him until he was diagnosed (because that coincided with the end of my schoolyear).

The nature of The Boy's treatments and, more specifically, the addition of Meatball to the family, has tipped the balance in the other direction. Several times this evening when I picked The Boy up to change a diaper or to give him a hug after his Neupogen shot, he cried for Grandma. We actually put him in his own bed tonight, and he was doing fine for awhile, just playing with his toys and reading his books. He needed a diaper change and was SCREAMING at the gate for Grandma. She wisely declined the invitation. When it's not Grandma, it's Daddy...but when it's Mom's turn, generally it means something that is less fun. I do the diaper changes, the medicines, the shots, the teeth brushing, and the bedtime. I tell him when it's time to turn off the TV. I'm the one that says "no" to a second cup of fruit ice and the one who insists on offering things other than noodles at the table.

In other words, I'm the bad guy.

The benefit that I saw a few minutes ago to my being the bad guy was The Boy's progression from sitting in the chair insisting on more Elmo to willingly sleeping in his own bed. I brought him upstairs and sat him on the bed, and Grandma read to him. Then the phone rang and she left him in there, thinking that I'd go in and sit with him. As it turned out, he was playing with another "favorite toy" (this shape sorter) and reading his elephant book, so he didn't need me right away. Then came the screaming for Grandma, the diaper change, my cleaning the diaper (with my handy-dandy new diaper sprayer), and my return to a still-screaming boy. Amazingly enough, Meatball stayed asleep through all of this.

Once I had The Boy in bed, he started calming down. He lay down on his Elmo pillow to go to sleep, all on his own. Furthermore, I left the room as soon as he put his head down, and he was fine with it.

I guess that because he knows that I'm the bad guy and will rarely be the softie on his behalf, he figured that there's no point in fighting the bedtime thing.

Next goal: getting this bed thing to happen BEFORE 11 PM.

Still frantic...but surviving

I've been trying to analyze why it is that things still seem so frantic. Here was my day today:

I woke up with Meatball at 8:30. Grandma had decided to take The Boy in with her all night and handle the diaper hell herself. I protested but she insisted. She told me that there were some poopy issues overnight and that I had some diapers to clean up. No problem--I had just received the brand new diaper sprayer in the mail and figured I'd install it, and then clean the diapers. My mother asked if we should call someone. I figured that if Musical Daddy could do it, I could do it too. I started by turning off the water into the toilet and realized that the toilet with which I was working was a million years old (no, not really) and that I was without the washer that I needed to make a decent seal. Off to Home Depot. While there, I figured I'd buy the washers and also buy a new part for the water intake, as the toilet had a really old pipe instead of a flexible tube. Got home and realized I had gotten the wrong size. Back to Home Depot. Meanwhile, the water wasn't quite shut off because the valve was also a million years old, so I couldn't tighten it properly. I got the thing installed correctly, or so I thought, but it was still leaking.

We called for help. In about an hour, we got it. The guy, who looked something like Charlie Daniels (think "Devil Went Down to Georgia"), tightened some stuff and it was all better.

Now I have a laundry basket full of REALLY heavy wet towels. That's next on the laundry list behind the chemo-toxic poopy diapers, towels, and bed pads. Oh, and puked-on Mickey PJ's. But that was from just now.

Anyhow, by the time we got all that resolved, it was nearly lunchtime. Mom had wanted us to go out, the two of us and Meatball, but I wanted to be sure that The Boy was taken care of before trying to leave him with my dad. We all sat down for lunch at this point. Then we had to be sure that The Boy's diaper was changed. And that Meatball was changed. We left the house after 1 PM.

For some reason, Meatball was really heavy in the Ergo carrier today. He probably belongs on my back, by weight, but is still pretty young for that. I don't know...maybe the other mommies who have Ergo carriers also have little babies. Usually I can wear him in the Ergo for a long time without a problem. We got some things, including a new diaper pail (garbage can with step-on capacity). We made a few stops, went to the pharmacy to get a prescription for The Boy, and then home. The prescription was free, by the way, as The Boy qualifies for medical assistance through the state regardless of income. Hey, that's why we pay our taxes.

By the time we got settled in at home, it was already just about time for dinner. We ate leftovers together, and then The Boy got a bath. Grandma played it just right, and this time he enjoyed his bath. She figured she'd just dress him in her room.

I barely had time to button the Mickey PJ's before he started throwing up. Pretty much all of the noodles and chicken and watermelon that he had eaten came right back up. Fortunately, I managed to catch it with the bed pad and the towel that my mother had tossed my way. Hence the laundry queue.

Right now I'm feeding Meatball, who just woke up from a long nap in the playpen. When he sleeps on his own, he now prefers to sleep on his stomach. He goes to bed on his own at night and for some of his naps, and the second I put him down, if he is awake, he turns right over.

I don't know how it all of a sudden got to be almost 7 PM. I'm glad I'm not alone, that I have my parents and my sister, although life will be MUCH better once Musical Daddy gets here.

Friday, December 4, 2009


First chemo at the new hospital is done!

I am very much looking forward to the fact that we do NOT have to go to the hospital for counts! How cool is that?! Instead, the nurse comes twice a week, does the blood draw, and if we need something, like a transfusion or a followup test, we come in at that point. No more waiting around for 2 hours with both children just to be told that we don't need anything.

I am also feeling perfectly fine about taking a break from Vasotec for potassium levels. That's the stuff that messes with his red cells. Not that his red cells can do much for themselves at this point anyway.

Meatball had a pretty good day today. He's been letting me sleep, bless his heart! He gets up to eat at 5 but then goes back to sleep! If he gets up and stays up, I go exercise. This morning, I did a little bit anyway, and Meatball sat in the chair. I was able to do 10 minutes, which is better than no minutes.

Every so often, my mother calls someone to come over and help out at the house. As in, someone to watch Meatball for a few minutes so that I can get something done. I have taken that time to unpack a few boxes every time. Today we had Aunt Jeanne, our friend who came to visit us several times in NJ and now here. It's only 40 minutes or so for her now as opposed to 6 driving hours, plus whatever stops she makes. She's great because she REALLY knows Meatball.

On the subject of Meatball and his temperament: Musical Daddy and I have always believed that babies are little bio-feedback machines. If you are stressed, they'll feel it, and they'll feed it right back to you. Meatball is definitely that sort of baby, who will easily feed you your stress. And even stress that you never knew you had. The proper response to Meatball, if he is crying and has already been fed and changed, is NOT to try frantically to soothe him by bouncing him around. Sometimes he just wants to be put down in bed and avoid the bio-feedback function altogether. Other times, he wants to be held and rocked to sleep. From there, he can be moved into another location. He's actually pretty good about that--when he falls asleep, he can be placed elsewhere. That said, he can also fall asleep on his own.

So that's Meatball...The Boy has done REALLY well with this chemo. It helps that he only received half of the Carboplatin that he otherwise would have gotten. They are going to work their way back up toward a full dose. When they said that they're going to finish the whole chemo, they're going to do all of the rounds, but they may cut doses from time to time if they need to.

Going to cut this short. Everything is great here. Everything except being without Musical Daddy. We all miss him. Thank goodness for technology.

Thursday, December 3, 2009

Day Two--still looking good

We're still loving it here in the new hospital. Again, as much as you can love a hospital in the first place. New things that are great that I forgot to mention:

Meal tix for me, and they bring the food just like they do for The Boy. I can get a simple meal three times a day for free (anything over $5 costs money). They do it for me because I'm a nursing mom. I asked if it mattered that the patient isn't the one nursing, and they said that they do it for moms here all the time who have other babies. So not only is Meatball allowed here, they welcome us, in the interest of keeping our family together and not exposing Meatball to all kinds of other people.

Apparently, they will do count checks AT HOME. That's right, ladies and gentlemen, no schlepping to the clinic twice a week just for counts. I'm not sure how often we will be going to the clinic. Maybe once a week anyway, but no waiting around for counts. And even so, oncology has its own lab, so counts come back in under 10 minutes, ANC and all.

I do need to make a sign for the room reminding visitors to wash their hands. It seems as though the medical staff does it anyway. The sink and the Purell are in the atrium.

I met the new nephrologist, who knows the old nephrologist. I also met a physical therapist who said that she would be glad to provide services for him if he misses that which is provided by early intervention due to hospitalization. I met a dietitian, who was unconcerned about his diet and wanted to make sure that he was getting enough calories. She wanted to know if we were adding fatty things to his food to increase caloric intake. The way this kid powers through "dip" (Smart Balance non-dairy spread) with his noodles, I'm sure he gets enough. His weight has not been a concern. We wish he'd grow a bit taller.

Now, we're having a visit from the Eat N Park cookie!

Wednesday, December 2, 2009

First day of new hospital

I could write an entire book just detailing everything that's gone on today. I'll try to keep it short. And when I say short, I don't much mean it because there's so much to say.

I mentioned the little miscommunication about being able to go home or not. She also neglected to tell us that we were able to get a box lunch if we were going to be here for long. Which, of course, we were. Oh well. We finally got into the room at 3:30 or so.

The inpatient area is right down the hall from the clinic. It's very easy. For those late night admissions we would still go through ER, but for anything else we start out in the same place. One of the difficulties, though, is that for now someone still has to go sign in at the admissions desk. This means that we really need two people there.

The parking situation is better in some ways than either hospital to which we've been before. The major drawback is the cost--$5 a day and that's the discounted price! Outpatient parking is free, though. But in terms of convenience, it's very easy to get to the lot and very easy to get from the lot back to the hospital, much unlike the hospital in Philadelphia, where it took about as long to get to the car as it does for us to drive from the house to the hospital here.

By the way...I left the hospital parking lot at 5:55 to get my sister and bring her to the hospital. She was at the house. I picked her up, drove back to the hospital, then drove back to the house. I walked in the door at 6:30. Not bad, right? It's under 3 miles away, but it is a fairly busy area with lots of traffic lights. Generally it takes 11 or 12 minutes to get there, could be less, could be more.

Fortunately, this hospital does not have a policy about avoiding the presence of children because...the hospital is FOR children! This will likely come up a lot as I talk about the new hospital. It is a brand new building, very well designed, and definitely has a lot of extra touches that a hospital for adults is lacking. Also, this hospital has a dedicated oncology floor. Everyone there is an oncology patient. There is a separate side for bone marrow transplant patients, and there are separate playrooms--one for oncology patients in general, one for isolation patients (neutropenia, C-Diff, those sorts of things), and one for bone marrow patients. From what they described, it sounds as though the playroom is okay for The Boy, and he is allowed to roam the halls (supervised of course). There are areas where people can just hang out. Who knows--he might find himself a chemo buddy.

The Boy's room is very large and looks much more welcoming than you'd expect a hospital room to look. The floors are wood, or at least they look it. Each room has its own shower. The rooms don't have refrigerators, unfortunately, so we have to keep stuff in the community fridge. Food is delivered to outside the door (the rooms have an atrium which has a sink), and the tray is passed through a hatch when he is finished with it, thus eliminating the need for someone to come around trying to collect it, only for us not to be done and take it to the pantry later anyway. They also have a similar system for dirty linens. The food itself is delivered when we call for it, anytime from 6 AM to 8 PM, and anytime after that they can still call to get things. I like that because the 8:30 breakfast thing seldom worked for us in the old hospital. Not if he gets up at 7 and is hungry. I guess having the "room service" available means that we don't really have to keep as much food for him because we can just call for it to be brought.

Since Meatball is allowed in the hospital and the doctors and nurses are fine with his presence, I can actually spend time at the hospital. There are some times tomorrow when I'll be by myself with the two kids. I'll find ways to manage. Actually, they said that since I'm a nursing mother, even though the nursling isn't the patient, they can give me meal coupons. Also pretty cool.

The Boy isn't entirely sold on the place or the people yet, although I think he'll like being able to get out and about a bit more. Thing is, he can't remember his life without his old doctors and nurses and hospital, and now we switched it up on him. It will take awhile for him to get used to everyone and everything, but I'm sure that he'll be happy.

Well, everything is relative. But he doesn't know any better--he is happy! And everyone loves him.

The more things stay the same...


This time, for a room to be ready. The process of being seen for pre-admission was not long at all, but then, since a room wasn't ready, we have to sit around.

Nice thing is, we wait in the waiting area here that has kid shows on TV and toys.

It doesn't appear that they have juices, coffee, and snacks, like we had at the old treatment center. That's a drag. Grandma went down to get The Boy some noodles and juice. She forgot a straw, and it was a juice bottle. Juice on pants. Of course I did not pack pants for him because he was just going to wear hospital stuff.

So he is wearing Meatball's pants.

An update: they JUST got started cleaning the room. It will be another hour. We had asked about going home and they said not to. The nurse coordinator said that we should next time if the bed isn't ready.

Tuesday, December 1, 2009

And as for Mr. Meatball

He's had a cough for awhile, with some wheezing We took him to the doctor, who said it was a cold and mild bronchiolitis and to rinse and suction his nose. No biggie. He said that some little ones get the wheezing from a cold and said, "so there's a history of asthma in the family?" Thanks, dear.

Meatball weighed 18 lbs 13 oz in his diaper, so probably take off 3 oz for the diaper. They measured him at 27.5 inches.

I really liked the doctor. We're going to click in terms of caring for the kids. Also, I hear that he davens (prays) beautifully. He asked what Meatball was eating, and I said, breastmilk--what else would he eat? The doctor said, "nothing!" For the record, it wasn't intended as a slight against formula feeding--it was a question more like, "what would he eat? Steak? Pizza?"

No time to webchat with Musical Daddy--he has dinner out and then rehearsal.

Now, finally to clip some nails.

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.