Friday, October 31, 2008

Here we go again...

Off to the hospital in another 20 minutes, as soon as the dryer finishes with the diapers. The Boy spiked a 99.7 fever at around 5, which shot up to 100.7 and is now around 100.4.

What a great Halloween.

Thursday, October 30, 2008

Wolf! Wolf! Wolf!

Surgery Tuesday, depending on The Boy's counts on Monday.

I guess I might not unpack the big suitcase after all. Although, in the reverse-psychology method of dealing with life's superstitions, I probably should. That would ensure that the surgery happened on Tuesday.

One does not change ANYthing when the team is in the middle of a rally, after all. For instance, the reason that the Yankees haven't won the world series since 2000 is because I got rid of the Lucky Yankees Chair when I moved back to New Jersey from Ann Arbor.

Absolutely Almonds...

Or, completely insane. Whichever. I'm easy.

I feel like my entire life is in limbo right now. Yet again, we are at the mercy of strange and unknowable forces... blood counts and doctor schedules. What are we going to do? When are we going to do it? To quote the song, What's going on?

Can't figure it out. My head hurts. There's no food in the house, so breakfast was a Quick Chek egg sandwich. Actually, we had breakfast food. I just didn't feel like cooking it. The Boy and I snuggled for a bit and played for a bit, and then I packed up a breakfast for him and we left.

I cancelled a jazz band rehearsal at school for this?

My cel phone battery won't charge. I hope it's the battery and not the phone, although it would give me an excuse to get my iPhone. Not that we can afford one, but it's cool enough that I'm willing to make a change or two.

I love having to explain to the students that I had a bunch of last minute changes and actually will be in school for the next two days. I love having to explain - again - to my administrators that the surgery was called off and would be rescheduled for some unknown time in the (near? distant? near-distant?) future.

I have a headache.

I'm having focusing issues, if you haven't noticed.

Wednesday, October 29, 2008

Surgery's off...

The Boy's ANC is too low for surgery. He's getting some nupagen as we speak, and The Wife will be coming home with several shots for us to give him.

Here's the complex part: finding a date that is compatible with the surgeon, anaethesiologist and the other people that are involved. We don't know when the surgery will be.

Frustrating.

It could be the 7th (Friday). It could be the 13th (Thursday). It could be December. It could be never. I really, honest to goodness, cannot imagine anything more painful than this process has been. Here we go: pack the house, buy the food for snacks, do the laundry, do the cleaning, empty the kitchen, create our absences at school.... and then have the rug pulled out from under us.

Now what?

I can't help but to think: if they had done the f***ing biopsy when they told us they were going to, would things be different? We might not have done chemo last week, and his numbers might not have crashed.

Breakfast...

I wanted to title this "The Last Supper," but that's kind of morbid and fatalistic. So, I'm not.

The Boy had his last meal before the surgery this morning - breakfast! He ignored the pancakes, ignored the eggs with ketchup and filled up on grapes. Sigh. He's on a clear liquid diet for the next 24 hours, which is going to make tonight no fun at all.

The babysitter is meeting my father at the hospital for the EKG and the last minute bloodwork this afternoon. If his numbers are low, they'll give him nupagen. If not, then they'll just do the EKG and send the results to CHOP.

Can't wait for this to be over.

Tuesday, October 28, 2008

Nerves, nerves, nerves...

Had some potential good news this week - more on it in a few weeks, as the situation develops and grows some legs. It's nice to have positive things in life start to happen as the rest of life seems to be flushing itself down the crapper.

Ah... I shouldn't say that. One of my colleagues at work, when he heard the news about the relapse, asked me what the disposition of the baby was during all of this stress. Watching him, I am continually amazed. He is a normal, happy, healthy, playing, fun-loving little baby boy! He loves his stackable cups, taking one in each hand and smacking them on the ground while he crawls around the house. He loves his food, makes decisions about what he wants and what he doesn't want, and definitely chooses which parent he wants to spend time with. The good news here is that he's decided that Daddy is okay to snuggle with at night, so I can help my wife a little bit. Before, he'd only respond to her at night. Now, he will occasionally flop over onto my belly / chest / leg / whatever.

Last night, he flopped onto my belly, then rolled onto his back, with his cheek up against mine. He smiled at me, then grabbed my glasses and waved them in the air before I had time to react. Little imp, indeed.

The surgery is on Thursday. CHOP screwed up again and called us today to let us know that we had to have a cardiology workup for the anaesthesia people. That makes perfect sense, of course; but, when we're told at 4PM on Tuesday for a Thursday surgery that without the workup the surgery won't happen, we tend to panic a bit. My wife went through the roof, and rightfully so. I found out what was happening and what information we needed. My wife made an appointment at the Valerie Fund Center for tomorrow, and I made the arrangements for the babysitter to drop the baby off at the hospital for my father for a 2:30 appointment.

The Boy was going in tomorrow anyway, because Dr. Narang wants one more round of blood counts before the surgery. If his hemoglobin and ANC (absolute nutraphil count) haven't gone up, they want to give him a shot of nupagen, which is the stuff that supercharges his bone marrow into producing more cells. Considering they're going to perform surgery on him on Thursday (read: "gut him like a fish"), it's a good thing to make sure that he has the hemoglobin and white cells to git 'er done.

The Wife went to Trader Joe's tonight to pack a snack bag for us. Considering that we'll be in the hospital for an unspecified length of time (could be three days, could be a week, could be more), it's nice to have a wider variety of snacks for us besides the hospital-provided jello, pudding and 4 oz containers of fruit juice. (That's what Barnabas has. Who knows what CHOP has - considering the way they've treated us, it wouldn't surprise me if they had airline pretzels or less.) She picked up some fruit strips (like Fruit Roll-ups, but made with actual fruit), granola / cereal bars, Pringles, that sort of thing.

That goes in the car on Thursday morning, along with the BIG suitcase of clothes, the computer bag, with little iPod television thing my father gave me, some DVDs, my magazines for the last month (Muscle & Fitness, last week's Sporting News and ESPN, Rolling Stone, Parenting, Instrumentalist, etc.), a couple of novels, five or six television shows on the iPod Touch (which has wifi capabilities), a couple of movies on the other iPod (most notably the 1966 Adam West "Batman" movie, which TiVo picked up for me), some headphones, toiletries and any other random things that we can fit inside.

The plan is for us to go down on Thursday morning. Either Saturday night or Sunday morning, I'll come home and do my two church gigs on Sunday and go to school on Monday, then return to Philly. The Wife will go to school on Tuesday, and then we'll figure out what happens after that. With luck, we'll be able to transfer him to Barnabas by then, if we can't bring him home.

Either way, I'm going to bed now. I've been moving since 7AM, and it's now 11PM. I'm tired. I don't do 16 hours like I used to do.

Monday, October 27, 2008

Forever Breakfast

My mother-in-law has Sesame Street playing on the television - something that we don't watch, because it makes SO MUCH more sense (sarcasm on) to have our kid watch Buffy, Scrubs, House & my sci-fi shows (I draw the line at The Shield) rather than children's television. He's eating as slowly as I can imagine someone eating, which means that I have no idea when I'm getting out of the house this morning.

Sigh.

Sunday, October 26, 2008

A Fun Weekend...

On Friday, I took time from the marching band to pick The Boy up from school, as Grandma was waiting for The Wife at the airport. My friend Dan came by with a great Shabbat dinner for us; he and his girlfriend ate with us, and we had a wonderful, fun and entertaining evening: a nice meal (we polished off the whole cinnamon bobka loaf) followed by some fun Rock Band playing.

Saturday, we went to the comic book store together (The Boy and I), which is always fun. He likes taking the "New This Week" signs off of the wall and crawl around with them. Afterwards, we went back home and napped together. Saturday night, The Wife and I had a nice, romantic evening together.

No details. A gentleman doesn't kiss and tell.

We got home, and The Boy proceeded to wake up from his sleep and play for about three hours. Finally, The Wife fell asleep as I took the baby into the living room, and he proceeded to throw up on me, which woke everyone else up with me filling the swear jar with some extra coins. Whatever. All was soon resolved (it really is helpful to have a third set of hands).

Today, we dressed him in his monkey costume for the Halloween parade in Westfield. He marched with me and the band, and he really enjoyed being dressed up and seeing all of the other children in costumes. Afterwards, he, my wife and her mother came to my marching band competition (not such a great hit by the band, although they did march extremely well) and then we went to dinner with Aunt L and Uncle B.

If you were to look at him tonight, and to watch him playing at home, you would think he was the happiest baby on the planet. He is smiling and laughing and playing and having a great time. He was such a giggle man all night tonight, spending a solid twenty minutes laughing and giggling with Uncle B and I.

All in all, an extremely interesting day and an interesting weekend. I'm starting to get nervous about Thursday; time continues its inevitable and unpreventable march.

Friday, October 24, 2008

Going Nucking Futs....

I tend to respond to bad news the same way that my oldest brother does: with relatively inappropriate jokes. I've gotten better over the years, but some habits die hard. When The Wife told me about The Boy's tumor, I had that scene from Family Guy run through my head. You know the 80's tune that's got the rhythmic chant "Amadeus, Amadeus... Amadeus, Amadeus, Amadeus," etc? The same thing happens inside Peter Griffin's brain, except a tumor-shaped thing says, "I'm a tumor, I'm a tumor... I'm a tumor, I'm a tumor, I'm a tumor," etc. Ugh.

I'm frustrated as all heck about this whole thing. The worst part about it is, there is no target on which for me to be frustrated! Who can I get mad at: The Boy, for getting sick? The doctors, for following the current Wilms' Tumor protocols for his stage(s) of tumors? The surgeon, for waiting two months for the surgery? Well, maybe the third - but, then again, the way it grew was strange. We could very well be looking at a third surgery, if they had done the surgery in August as scheduled.

This pretty much cements my wife taking a couple of months' off of work, for family leave. If chemo intensifies, we're more than a little bit concerned about being able to take care of him. We're going to miss a lot of days of work if she's not home, not to mention paying for the babysitter anyway. The chemo is difficult enough on The Boy as it is. If it gets more intense, then we're worried about his response to it.

Thankfully (ironically enough), I've had enough therapy in my life to be able to deal with the depression that has overtaken my life. I feel quite hopeless right now, as the light at the end of the tunnel has retreated back a mile or two. It feels like there's not a damn thing in the world that I can do to help him or to fix it. Heck, I've even been (authentically) praying for things to get better - first time in my life I've ever truly, sincerely prayed for anything. Nothing seems important, nothing seems real, nothing feels normal. I'm walking around, a little light-headed, a little nauseous, with a headache, a tense back and a jaw that hasn't unclenched in three weeks.

It's hard, because I need to be there for my son, my wife and myself. I feel pulled in fifty different directions and feel unable to focus on any of them - first time in my life that I've let this many balls hit the ground. I'm used to juggling fifteen different things at a time - school, classes, marching band, lessons, friends, family, etc., etc. Right now? If I get to school on time, it's a victory.

(For the record - I have been late to school, unintentionally [read: doctor's appointments], a total of six times and 18 minutes in my 9 years of teaching. It doesn't happen.)

Ugh.

Lunchtime. I'm not hungry, but I need to eat. I'm taking Alleve to help my back, and it makes me more nauseous.

Bad news...

The growth, as suspected, is tumor. Fortunately, it hasn't gone anaplastic on us, which means it hasn't grown past a stage 1 tumor and hasn't spread to anywhere else in his body. Unfortunately, this means that the surgery next week will be that much more invasive.

It's quite depressing. We just can't catch a break.

Thursday, October 23, 2008

Nuttin', Honey...

Still nothing. Lots of nothing.

No news.

We all did get a chance to rest together, though I think I woke the baby when I accidentally clanged the bathroom door on my clumsy way past.

I have chorus rehearsal tonight in a cell-free zone. Lucky me.

No news...

The program, by the way, was "The Great Space Coaster." Crappy children's television, but the "news announcer" was a gnu, and he'd say, "No g-news is good g-news," every day.

No news. Still waiting.

And waiting.

And waiting.

And waiting.

Mental note: when the baby screams in pain from midnight to 3AM, give children's tylenol MUCH earlier than 3:20AM.

Wednesday, October 22, 2008

No Gnus is Good Gnus

(Bonus points for catching the reference. Think early '80s children's programming. It will be identified at the end of the post.)

Nothing back yet in regards to the biopsy. We have spoken with our doctors as recently as 6PM tonight, and we haven't heard back. My expectation is that we'll hear something tomorrow around lunchtime, more or less. These pathology reports take time, and I'd rather they were careful than fast.

Not that I want to wait forever, mind. But two days is a reasonable length. Three days is reasonable, but not preferable.

The Wife, The Boy and my father got home around noon. I stayed home from school because, when I awoke, I could not talk or sit up, from a bad throat and a bad back, respectively. Discretion being the better part of valor - and, considering that I haven't taken one sick day for ME all year, which - considering it's the last two weeks of the marching season - is really pretty good - I stayed home to rest. We rested together for an hour-ish when the van arrived for The Boy's chemo. Foolishly, I decided to go with them. Should have stayed home - I need the rest.

Chemo went smoothly. The blood numbers were fine - lower than before the biopsy, but those hemoglobin counts were inflated because The Boy's blood was artificially thickened by not having drank anything for hours beforehand, then the post-biopsy numbers were depressed because of the IV fluids he had received. He's on the doxorubicin and the vincristine, which means red pee. Hooray, Diaper Hell night.

We were done with chemo around 3:30. Which was great, except that the van driver's day ended at 3. One thing ran into another - The Boy was asleep, so we won't call for the van yet; the driver would be there before five; he was on his way; he'll be there between 5 and 5:30; they can't get access to a car seat; he's on his way; there's an issue with the car seat; he's on his way; and finally he walks through the door at 6:15.

Keep in mind, by the way, that my wife had a total of about three hours' sleep the previous night, as had The Boy. I slept more than they did, but my mood was improved by the fact that I hadn't eaten since breakfast.

If I had stayed home, I would have come to get them at 4, and we all would have been home at 5. I would have been better rested, with my back being a good deal more relaxed. Whatever.

Long week/end. Jazz Band, school, Marching Band, Church Choir tomorrow - 7AM leaving home, 10:15PM arriving back. I might skip out on marching band. Friday - school, marching band. Saturday - away game at Irvington. Hooray. Talk about cesspools - Irvington is the boil on the rear end that is New Jersey. Sunday - church, Halloween Parade in town (The Boy will wear his costume, because he's going to be in the PICU on Halloween), NJ State Championships in Sayreville, dinner with Aunt L & Uncle B, home to collapse.

Pending, of course, the results of the tests. Everything is up in the air at this point, although my understanding is that the date of the surgery will likely not change.

Tuesday, October 21, 2008

Don't Panic...

Have you ever read Douglas Adams' book, "The Hitchhiker's Guide to the Galaxy"? You might have seen the movie, but I've read the book - actually, the entire "trilogy" of four books - at least two dozen times. It's pure, ideal, understated British humor. The beginning of the series has Arthur Dent, an average, everyday Earthman, hitching a ride on a hostile alien vessel that proceeds to destroy the Earth to make way for an interstellar highway bypass. "The Hitchhiker's Guide to the Galaxy" is a computerized book that contains everything a cool frood needs to hitch his way across the universe on a budget. It is contained in a sturdy plastic cover with the words "Don't Panic!" printed in clear letters on the cover.

Dr. Narang - one of the other oncologists at the Valerie Fund Center - told us not to freak out any more than necessary. She says that there are explanations of why The Boy's mass is solid and not liquid, and not all of the explanations are tumor-related. But, since The Boy's case has already been extraordinary, it wouldn't surprise anybody either way.

(Who knows - my kid might be Wolverine and might be growing a third kidney!)

(That's not a medical opinion. That's me trying not to throw myself out of my computer room window. Which wouldn't be smart, because the window is only five feet off of the ground.)

Dr. Comcast called to let me know that the pathology report would be available tomorrow, likely when The Boy and I are at chemo. That's good. Waiting for the results is as bad as waiting for an appointment.

The Wife just called. They are admitted The Boy for the night - his blood counts have gone down since the biopsy was done, and they're concerned that something is bleeding that shouldn't be bleeding. She's going to stay down there with him. I'll stay up here for the night; my father will likely go down and pick them up in the morning. Don't know what this'll do to chemo - likely reschedule it for Thursday or Friday. We'll see.

Man. The hits just keep on comin'. Looks like I can get some housecleaning done tonight, I guess.

Damn.

So, the mass is a solid mass. That pretty much rules out infection, which would be a liquid mass. It still might be the spleen, and it still might be the tumor. My money's on the second, but that's because I'm inherantly a pessimist.

Damn.

We won't know for a few more days, potentially into next week. The good news is that The Wife and The Boy will be home tonight.

Damn.

The kid just can't catch a break, can he?

I know that G-d has a plan. I know that he never puts us in a place that we can't handle. But, man... this stretches it. Why would my son, who is a beautiful, smart, friendly baby, be put through this hell?

Damn.

The Waiting Game, part 23...

So, apparently Dr. Comcast is actually going to grace us with a display of his mad skills this morning. The Wife and my father are in Philadelphia as I type this, checking in to the 3rd floor outpatient surgery area. I'm in school, wasting time during my prep period, mostly because I spent two hours last night doing school work at home and thus have earned fifteen minutes of procrastination.

I'm nervous.

Probabilities:
1) The growth in his left side is an infection that requires serious treatment. This could mean the installation of a drain tube into his side while they treat the infection with IV antibiotics, resulting in a hospital stay of indeterminate length. This could mean that The Boy will just be treated with antibiotics with no drain tube, which could mean a short hospital stay or an at-home treatment.

2) The growth in his left side was an infection that was eradicated by the strong antibiotics that The Boy received in the hospital last week. The infection grew during a time when he had no immune system and was sick - that was a bad two weeks, incidentally. The Boy received some pretty tough antibiotics. This means that he comes home today, no muss, no fuss.

3) The growth in his left side is an infection that requires surgical intervention. Not likely, and this would likely cause a longer hospital stay.

4) The growth in his left side is a tumor. Not likely, considering how quickly it grew and that it grew while The Boy was in the middle of chemotherapy. This would mean that his chemotherapy would increase in intensity, with the addition of at least one more drug to the regimen. It could also mean the treatment would be extended in duration, with the possible addition of radiation depending on the type of tumor found. It could mean emergency surgery as well. This is worst-case scenario.

5) The growth in his left side is a second spleen. Not likely, but this is the safest alternative. No intervention of any sort is required, and The Boy will come home today.

The time frame - they are done with registration now at 9:20AM. They go from here to a 10:30 biopsy in a CT scanner. The biopsy will be done around noon, and the results should be reported between 2 and 4 o'clock.

If it's something serious, I might head down after school. I might head down tomorrow morning, or tomorrow after lunch. Or, I might not go down at all, but I'll take The Boy to chemotherapy on Wednesday afternoon.

I hate not knowing, but this is a heck of a lot better than the limbo-status that Dr. Comcast has had us in.

Monday, October 20, 2008

The response from CHOP

"I am truly sorry that you had such a negative experience when pursuing
care with our institution for your son, [The Boy]. It was upsetting to see
how this mis-communication of information affected your family- and we
do care about every family receiving family centered care that results
in an ideal patient experience. It is obvious, this was not the case
for your family, and for that I apologize.

Although I cannot reverse the series of events that caused this current
situation, I can certainly bring attention to them. I will begin the
process of identifying the key leadership who need to see your concern
and work to prevent a similar occurrence, for you and other families, as
well as an apology with more weight to it than mine.
Thank you for your patience with this process, and for taking the time
to highlight a process that needs attention."

I also had a twenty-minute conversation with one of the secretaries / nurses (not sure which) in Dr. Comcast's office. Basically - he's a surgical jock and doesn't relate to people well, nor does he have the longest memory when it comes to non-surgical things. He just forgot. (Reassuring, isn't it?) I told the lady that I was extremely disappointed and felt lied to (basically, what I said in the e-mail), and she told me that she was embarrassed for the hospital.

Good. They should be.

We're going to go through with the biopsy tomorrow. Afterwards, we'll see what happens. I'm going to ask The Wife to seriously evaluate the care that we receive. Dr. Rifkin told me that, while CHOP deserves their reputation, she has other people in New York that she could send us if we want, or they could do the surgery at St. Barnabas. I don't know if we're going to make a change, but it's reassuring to know that we can.

I've dealt with enough musicians who are amazing players but have no interpersonal skills, and that's how I'm starting to view Dr. Comcast. That would be seriously LESS annoying if I thought that we'd get out of CHOP owing less than $5000 to the hospital - not counting my lost wages due to the lack of family illness days.

Frustrating. I'm still cheesed off - SERIOUSLY cheesed off - but less homicidal than usual. I made darn sure, during my telephone call this morning, to emphasize the fact that they had BETTER be doing the procedure tomorrow.

Particularly since they've dragged their feet for so long that we don't have the opportunity for a second opinion or to move the surgery.

Sunday, October 19, 2008

My letter to CHOP's Customer Service

My son is a patient of Dr. Doolin, and we have been treated extremely poorly and lied to or mislead for weeks now.

We have been under the care of the pediatric oncology center at St. Barnabas Hospital in Livingston, NJ, since my son's diagnosis at the end of June. Our oncologist has been in communication with Dr. Doolin since August about performing David's second surgery.

Dr. Doolin's office has been informed, numerous times, that it is extremely difficult for us to get to Philadelphia. We live in northern New Jersey, which is approximately two hours away. My wife and I are both teachers, which means that it is extremely difficult to get out of work to come see Dr. Doolin: it means taking a full day off of work, and - considering our infant with pediatric kidney cancer - those days are in short supply.

Compounding this is the fact that Dr. Doolin has not been communicating with us; he has been communicating with our oncologist. All those communications have occurred after 5PM, meaning that we have been unable to communicate with him at all.

On Thursday night, we received a call from our oncologist. She told us that Dr. Doolin had just called her (at 5:30PM) to tell her that David was going to receive a biopsy. He was not to eat after midnight and could receive clear fluids until 7AM. We should plan to pack for 3 to 4 days, depending on the results of the biopsy.

This was the culmination of several weeks' worth of talking between Dr. Doolin and St. Barnabas Hospital. My wife and I took the following day off from school, packed our lives into our car and headed off for Philadelphia. Our families were preparing travel arrangements to help, which included my brother preparing to take a day off of his job as well as my mother-in-law preparing to take time off of her job. They measured David's weight and height and sat us in a room to await the doctor.

Dr. Doolin's office had no intention of doing a biopsy on Friday. They called us down to SCHEDULE a biopsy. They asked us for information that they already had from our prior visit in September and from the paperwork that St. Barnabas had forwarded. They didn't examine David, just showed us the pictures of his CT scans (which we already had been shown weeks earlier) and told us the procedure that would be happening (which we already had been told about a week earlier). Then, we waited 45 minutes for the surgery scheduler and were forwarded to the Anaetesia Resource Center. Mind you, the baby still hadn't eaten since 9PM, and it was not 10:30AM - something that is cruel to do to one so young.

When we arrived at the ARC, David was weighed and measured - again, 2nd time of the day, with the same results. We were then left alone, with a hungry 13-month old, in a six-by-ten office. We waited an hour and a half, in that small room, for a nurse to come examine us. She asked us the same questions that they asked us upstairs. The sum total of the "examination" was touching him with a stethoscope five times. That much time in such a small area is cruel to do to a child that young.

Here's my problem: I feel that we have been lied to and mislead by CHOP. We informed the office - numerous times - of the difficulties that we have getting to CHOP for daytime appointments and asked - numerous times - to have the exams on the same day as the biopsy. My doctor was told that we would have the biopsy, and the only thing that happened was the taking of information that SHOULD have been done via telephone. Not a single thing happened during that day that could not and SHOULD not have been done via telephone.

To compound the annoyance, the parking attendant was quite rude to us and gave me 17 singles in change when we paid for parking.

Friday was my last family illness day - which means that if I want to spend time with my baby in the hospital, it will cost me $327 per day - on top of doctor's fees, gas, tolls and parking - to see him.

I am immensely disappointed in CHOP. This hospital has a sterling reputation, and - frankly - all I saw was a cold, impersonal place that is inconsiderate to my family's needs. All I have seen is a hospital too arrogant to communicate with us or the caring doctors at St. Barnabas who have been responsible for David's care up until now.

I don't expect anything to change, because at this point, we're stuck with the uncaring, inconsiderate bureaucratic nightmare that is CHOP. I'm writing this in the likely-vain hope that SOMEbody cares enough to even send me an e-mail saying, "I'm sorry that you were treated badly on Friday."

A Matter of Principle

Man, I hate bureaucracy. From a sociological point of view, I understand its necessity and I understand that bureaucracy is the only way to handle large groups of people seeking the same service - in this case, patients at a hospital. From a model of efficiency, bureaucracy is necessary and important.

But, MAN, is it frustrating. The communication between the levels of bureaucracy that we're dealing with right now is non-existent. That's frustrating, particularly since everything seems to be running fast and loose and on the borders of the realities of the hospital.

For the first thing, my oncologist has been communicating directly with Dr. Comcast - meaning that there's no real record of their calls, other than what they've said to each other. For the second, my doctor has been telling Dr. Comcast for six weeks now, that us getting to Philly is a real difficulty because of: 1) the prohibitive length of the drive (2 hours, which isn't that bad, all things considered), 2) the lack of friends / family in the vicinity, meaning that we're dependent upon hotels or charity for a place to stay, and 3) the fact that, as teachers, it's extremely difficult to get the time off.

For the third, it's a really big stretch to say that Dr. Rifkin misunderstood Dr. Comcast. It's a large leap from "we're going to meet to schedule the biopsy" to "we're going to do the biopsy." I don't understand how that happens. Then, to cram a 13-month old into a six-by-ten office for an hour and a half, as we wait for somebody to come talk to us, is unreasonable and impractical, to say the least. If they had nobody to speak with us, they should have allowed us to wait in the waiting area, where he'd be able to move around and explore his environment, rather than staying in a small room and crowded hallway.

We've received a bit of feedback from people who had pointed out CHOP's sterling reputation as the leading pediatric oncology center on the east coast. I'm not disputing that. I'm just saying that they treated us worse than shabbily and either lied or mislead our doctors and us, AND that they cost me, personally, quite a bit of money outside of doctor's fees, gas, tolls, parking and food (which are expensive enough as it is).

I'm leaving an e-mail for the customer service people. Tomorrow, I'm going to call my oncologist to complain, and I'm also going to call CHOP to make CERTAIN that they're actually going to perform the procedure and not just taking him down for a checkup AGAIN.

If they don't do it on Tuesday, watch for my head to explode.

Friday, October 17, 2008

I Knew There Was A Reason I Hated Philly...

Let me say this right now, to get it out of the way: I really, really, really don't like the Children's Hospital of Philadelphia. I think it's an extremely cold, impersonal place that does not know the basic concept of communication and dignity. I also believe that they are extremely loose with their patients' time and their patients' families' time, without the understanding that the sickness is difficult enough without having precious, precious days off wasted with useless office visits. I understand that Dr. Comcast might be the greatest surgeon in the entire universe when it comes to this stuff, but I cannot WAIT to end my association with this hellhole.

Again, here's what I was TOLD by Dr. Rifkin: The Boy will be getting a biopsy in Philadelphia on Friday. He was to have no food after midnight, clear liquids until 6. If the biopsy revealed an infection, yadda yadda yadda. If it was a tumor, yadda yadda yadda. I've said this before.

Here's what actually happened: we arrived at 9AM promptly. Our name was not in the doctor's computer plan, but Dr. Comcast came out and said, "The Boy is absolutely expected." They took us into the examination room, weighed him, measured him, and left us for the doctor. He came in the office, showed us the CT scans, and said, "Now we have to schedule the biopsy next week, and we'll schedule the surgery for the following week."

...

What?

...

Now, I can think of two possible reasons for this to happen. Reason number one is that Dr. Rifkin lied to us about the biopsy. Did she hear "they need to come in for a checkup so we can schedule the biopsy" and interpret that as "the biopsy will be tomorrow"? Reason number two is that CHOP lied to Dr. Rifkin. She's told us for weeks that she was trying to get the biopsy scheduled so we could make one trip to Philly, total. So, they told her that we'd do the exam and the biopsy on the same day, then went and did whatever the hell they wanted to do.

I'm positive that it was reason two. I'm positive that they out and out mislead Dr. Rifkin so they could shut her out of the procedure. They never had any intention of following through with what they told her.

It gets worse.

After our five minute conversation with Dr. Comcast, he introduced us to the lady who schedules the surgery. The scheduling process took about 45 minutes - we're now talking 10 AM by the the time this was done. (The biopsy will be on Tuesday the 21st, the surgery on Thursday the 30th.) We then went down to the Anaesthesia Resource Center for our "checkup." We got weighed and measured again. Then, they put us in an examination room and left us alone.

For an hour and a half. Although, after an hour, The Wife went for a sandwich and gave The Boy food for the first time in fourteen hours.

The nurse finally came and took the same patient history that we had given (two and a half hours) earlier in the day. They told us that The Boy would have a vein accessed in order to give two units of blood for tests - apparently, anyone who's received a blood transfusion needs to have a blood cross and check within two weeks of the surgery.

I flipped. They weren't going to try to access it through the port, they were going to be shooting for an IV in his hand. No way in hell was this happening. They couldn't do this during the biopsy, where he'd be sedated? Well, she finally called a few people to find the whole story. It turns out that they need the blood within three days of the surgery, so they wanted us to come in the Tuesday before the Thursday surgery.

Right. Drive fifty miles and take another day off of school to give blood. Hell no.

We argued until they agreed to do the blood tests the morning of the surgery. Then, they took the same medical history that they took upstairs (at this point, three hours earlier) and told us to go home. The total amount of "examination" that they did? She listened to his heart through a stethoscope. They did validate our parking, though.

We inserted our ticket into the machine, and machine wouldn't take it. The Wife had to get out to stop the traffic behind us in order that we can back out. Then, we find out that the parking price was knocked down to "only" $3, and I got 17 singles as change.

Here's my problem: not a single god-damned thing that we did today couldn't have been done over the telephone. Nothing. Dr. Comcast didn't examine the baby at all - neither did any doctor on his team. The ARC nurse didn't examine him worth crap. There was no need, in the remotest, to lie to us and to mislead us into believing that the biopsy would be today. Considering the length of travel - 85 miles each way at $2.90 a gallon is an awful lot - and the difficulty of getting days off as a teacher, I think they could have been a LITTLE bit considerate. They could have given it one second's worth of thought and understanding. They could have listened to ONE G-D CONVERSATION that they'd had with Dr. Rifkin - ONE G-D CONVERSATION that they'd had over the past seven weeks that we've been waiting for these JERKS to figure out what hell is wrong with this.

Why am I really so ticked off about this? Lots of reasons. The first is the complete lack of sleep and tripling of stress that we suffered Thursday night, waiting for the stupid biopsy to happen. The second is the loss of money that I suffered by skipping my choir rehearsal at night to pack for our indefinite time-period stay in Philly. The third is the loss of two days' of marching band rehearsals and one day of teaching. The fourth reason is that I get three days, total, of family illness time. Any days that I take now will be - likely - unpaid family leave. This means that if I want to be in the hospital for the biopsy or the surgery or any followups, it will cost me approximately $327 in pay per day. Which means, all told, that today wound up costing me around $450 - the loss of pay for the surgery day on the 30th, plus choir rehearsal plus gas plus other incidentals.

All because they don't know how to make a damned telephone call.

These people had better be damned good at their jobs.

Thursday, October 16, 2008

Sailing to Philadelphia - fo' reals, yo.

I was off by 30 minutes. I spoke to the doctor at 5:30. The over/under was surprisingly accurate; if I had money, I'd gamble.

So, we will be in Dr. Comcast's office at 9AM tomorrow morning. At some point after 9, The Boy will be taken in, sedated, and the growths on his left side will be biopsied. This is right out of "House" - he'll be in a CT scanner when the needle is inserted into his back, so they get an accurate chunk of whatever it is. Three possibilities that we know of: 1) infection, 2) tumor, 3) second spleen.

If it's #2 or #3, no worries. Cut it out, get the tumor from the right side, stitch 'im up and restart chemo, with the possibility of another drug or two added to the cocktail. No muss, no fuss, we're home in five days-ish.

If it's #1 - which is the most probable - things get a little squinchy. Once the biopsy determines the infection, they will likely install a drain and begin treating the infection with antibiotics. If it's a simple infection (like, no drain required & one antibiotic necessary), they might send us to Barnabas to have it treated. If it isn't - and it probably isn't - we'll be at CHoP until it's cleared up, then we'll go in for the second surgery, the recovery and THEN discharged. That timeframe could be anywhere from a few days to a few weeks.

Darn good thing that we have a good insurance plan. The only thing that it doesn't cover is missed time at work or the effects that sustained absences will have on my possible tenure.

That's the frustrating thing - how much do we pack? Three days' of clothing? Five days? Ten? How do we plan our lives? How do we eat? How do we sleep? How do we do ANYTHING?

Red, one of my buddies, gave me very sage advice today: "All you can do at this point is to put it in G-d's hands. Trust in G-d, and everything will work out the way it's supposed to work out." I'm paraphrasing a bit, but that's the idea. And, he's right. There's not a gosh-darned thing that I can do to control the situation; I can't plan my way around the bumps in the road caused by this. All I can do is my best.

One of my lifelong philosophies - brought on by a plethora of crappy events that have happened to me, from my brother's passing, to my mother's untimely passing, to my difficulties in school and in college, to my difficulties finding a home at work, to difficulties in my personal life - is that G-d puts us where we need to be, not where we want to be. It's true, in every situation I've encountered. Everywhere I've been, every experience that I've had, has shaped me and put me in the crucible's fire. I know that The Wife, The Boy and I will get through this, with G-d's help (and a rich oldest brother, which doesn't hurt to have as G-d's messenger).

Next update will be from the hospital. Hooray, WiFi and iPod Touch!

Passing the Ball...

So, I got home last night at 6:30 from marching band, with no word from the doctors, and really, really ticked off about it. Again - don't get me wrong. I don't mind them taking the time to seriously study the problem before the surgery - I'd rather that then a cavalier "let's open 'im up and root around for a while" attitude. But, still - I have a lot of balls in the air right now. I've got school (and a new job at that), marching band, the barbershop chorus, the church choir, some private lessons, a school jazz band AND my math degree to consider as I plan my time. Championships are in three weeks for marching band, and my concert is five weeks after that. My barbershop chorus is performing on the 23rd of November, and my church choir has an evensong (big choir thing) on the 3rd of November. Not to mention the always-fun planning of the holidays...

But, I digress.

The Boy joined me at marching band practice at 5:15 because The Wife had parent-teacher conferences. He had an okay time at the rehearsal, watching the marching and listening to the playing, wincing at wrong notes and - inevitably - drawing his eyes to the marchers who were severely out of step (because they're different, and that's what draws the eye). We got home and he yelled at me because he was hungry. He had steak and noodles for dinner. His appetite is obviously back - he worked his way through half a serving (about an ounce and a half) of steak and a full serving (4 oz) of noodles with tomato sauce. To be fair, half of the tomato sauce ended up on his face, arms and hands, so subtract those calories.

After dinner and clean-up, he was still fussy, so we snuggled on the easy chair until we both fell asleep around 8:15, while watching the baseball game. The phone rang at 9:00, right when The Wife came home from conferences. It was Dr. Rifkin, who let us know that she still didn't know anything. Dr. Comcast has decided to take the matter before the entire Tumor Committee at CHoP to get their advice.

That's a big deal, I gather. Those people are pretty hefty medical minds with a lot of experience dealing with Wilms Tumors and with partial kidney resections. They are mystified by the growth in the left side of The Boy's body, where the prior surgery was, and they want to get a handle on what the growth is or might be before they cut him open. We definitely appreciate that.

The over/under for hearing anything from Philly is 4PM. My guess? Bring him for exams and scans in Philly tomorrow (Friday) morning, with the surgery happening on Monday or Tuesday. With every hour that passes (it's currently 1:37PM), the probability that he'll undergo the surgery tomorrow decreases. I think there's about a 10% chance that they tell us to go one more cycle of chemo, then a CT scan 10 days from then and THEN the surgery will be schedule. That is a higher probability than yesterday - again, all probabilities are my own guesstimates.

I picked the "over," anyway. I think that we're not going to hear anything until after 6PM.

Wednesday, October 15, 2008

A Whole Lot More of Nothing

So, we continue to wait for Dr. Comcast (which is his new name for the time being. I call him Dr. Comcast because he's been like dealing with the cable company - "You must be home between the hours of 6AM and 11PM for our workers to come by." "I was - it's 11:30PM." "Oh - well, we'll just reschedule for next year then. How's June looking for you?"). Our oncologist called at around ten of nine tonight to let us know that Dr. Comcast was presenting The Boy's case at the Tumor Panel at CHoP tomorrow. Afterwards, he will call our oncologist, who will call us.

My prediction: down to Philly for tests on Friday, surgery on Tuesday or Wednesday.

My stress level is, honest-to-G-d, through the roof. I'm really, really agitated about this whole thing. I understand and appreciate that they are mustering all of the best medical minds at a great children's hospital on the behalf of my son. I really, really am glad about that. I understand that The Boy's case is special - things aren't supposed to grow in a cancer-free (post-surgery) area, particularly not in a two-week time period in the middle of a chemotherapy cycle. But, I just want to get this DONE.

I can't teach. I can't think. I can't carry on a civil conversation with anybody. I can't think. I can't sleep - well, that's not true. Little ever interferes with my sleep cycles. I'm just not sleeping particularly well.

I screamed at 4 of my 6 classes today and was - to put it generously - ineffective at marching band rehearsal today. This can't keep going on and on and on and on and on like this. We were told that this surgery was supposed to happen at the end of August. Then it was the first week of September. Then the second week. Then the end of September. Then the beginning of October. Then the middle of October. Now....???? Our oncologist told us that he needs the surgery SOON, which is something inclined to believe. His blood pressure has been going steadily up and up over the past couple of weeks, necessitating the addition of a second dose of his blood pressure meds for the first time since July.

And, as each hours passes tomorrow during the day, things look less and less and less like they will happen this week. And, if it doesn't happen this week, we wind up in a situation where it's not going to happen for a couple of weeks - because we start to get into interfering with the chemo cycle.

Frustrating.

Information Blackout...

The oncologist told us that his counts were okay - hemoglobin & white cells & nutraphils were good, platelets low but still okay - and that she thought that The Boy should go in for surgery. She had put in a call to Dr. Doolan, who was in surgery or something and didn't return it last night.

So, today, we wait to find out what's going. It could be anything from "bring him down this afternoon, surgery tomorrow morning" to "bring him down tomorrow morning for pre-surgical checkup and tests, surgery Friday morning - BTW, find a place to stay Thursday night" to "one more round of chemo, wait ten days, do another CT scan, then we'll talk about when surgery is."

If it's the third, you'll hear a nuclear explosion coming from the Union County area. That would be my head exploding from the waiting.

Tuesday, October 14, 2008

The Waiting Game...

The appointment is today. While I'm hoping thing will be different, I'm a little bit anxious about what's going to happen. I'm concerned about his blood counts - he's been off of the nupagen (the stuff that kick-starts the bone marrow) since Sunday, so most of the nutraphils (the white blood cells that actually work) in his body now are ones that he's made. I want things to be better, and I'm afraid that they're not. Do I have a rational basis for this fear? No, other than the fact that The Boy's temperature has been hovering around 98.2 instead of retreating to its customary 97.6.

I'm also concerned about the surgery date. I blogged before about how I feel like we're being tossed around, unintentionally or not. I feel like anything could happen, from "we're leaving for Philadelphia after dinner for an 8PM checkin for the surgery in the morning" to "we're waiting on the surgery - next week is week 15, then we'll do another CT scan ten days later and then talk about when the surgery is going to be."

Sigh.

Time will tell. My wife isn't answering her telephone (darn you, electronic leash!), so I don't know exactly when the appointment is.

Monday, October 13, 2008

Creative Eatings

So, since THe Boy has been fighting his various health issues over the past couple of weeks, one of the things that's changed is his eating habits. To be blunt, he's basically stopped eating over the past two weeks or so - a few bites of food here and there supplements an increased nursing schedule.

We're now in "picky toddler" mode - figuring out ways to make foods that he USED to eat enthusiastically more palatable. The latest: scrambled eggs are out. Scrambled eggs with KETCHUP, on the other hand, are definitely in. Challah bread with some jam is not a hit. He did, however, pull the bag of veggie chips off of the kitchen table and ate some.

Funny little man.

Sunday, October 12, 2008

it's good to be the king...

I don't know how I slept the last couple of nights without the feel of tiny feet resting on my legs.

I missed The Boy.

I'm glad we're home together.

Home again, home again...

On my way downstairs to get changed into choral robes for church this morning, I got a welcome text message from my wife: "We're going home today!" Quite exciting news! After mass, I went to the hospital, we loaded the car, and came home.

One more change about the surgery: it's not necessarily happening this week. For whatever reason, he was taken off of the fast track surgery list. His blood numbers were very good today (thank you, Nupagin - the drug that supercharges the bone marrow!), and they want to see if his body can resume manufacturing white and red blood cells. They will test him on Tuesday for blood numbers and a few other tests - something involving his liver and a few other things. My mother-in-law recorded it, and I haven't listened to it yet. After the tests on Tuesday, if they reveal whatever they're looking for, then they might tell us when the surgery will occur.

That's the frustrating part. I know that they're not jerking us around intentionally, but that's what it feels like. First the surgery was going to be in August, then in the first week of September, then the next couple of weeks, then the end of September, then the beginning of October, now later in October. I understand that they're being cautious, and I understand and appreciate that they are taking their time to make sure that they're doing the right thing for The Boy. It's just frustrating as hell to have to keep putting my / our life (-ves) on hold for some mythical surgery that will allegedly happen soon.

But, basically, it was a good thing that his numbers improved. If they didn't, they would have sent us down to Philadelphia and waited for him to recover there - and then done the surgery soon thereafter. Which means that, instead of having him at home (and being able to go to work and to chorus and have a life), we would have been stuck in Philadelphia for an indefinite time period.

He's been relatively normal so far today. He crawled around and played once we get home, then the two of us napped for a little while together. (He flopped across my belly and fell asleep. When we both changed position, he flopped across the small of my back and fell back asleep.) He woke up when Uncle B and Aunt L came over for dinner. He's been a little sleepy and a little cranky through most of the rest of the afternoon so far. The concerning thing is that he's feeling a little warm. I'm not taking his temperature right now, because I don't want to know. If I have to go into the hospital again tonight, I'm going to throttle somebody.

Saturday, October 11, 2008

Going Over the Top...

(meaning the WWI version, not the overly-exaggerated meaning we know today)

I'm home from marching rehearsal and getting ready to head back. I don't know who is staying over tonight - me or my wife - but am packed up in case I am staying. I haven't left yet because, with The Wife and The Boy are my brother and his family and my in-laws. Plenty of company for the time being. My feet need some airing out.

I could have gone to the competition today. I freely admit it. There are plenty of people around who would have helped us. But, from an emotional standpoint, I would have been going absolutely crazy. I do NOT want to be away from my home, my family and my baby for that long! I don't mind spending time at home while The Wife is at the hospital with the rest of the family. I did this morning - I cleaned the kitchen while our newest family member, Reggie, roamed the house. (Reggie is a Roomba, one of the self-propelled vaccuum cleaner robots that I bought a couple of weeks ago. He goes around the house and vaccuums stuff up, as long as you are there to fish him out from getting stuck under chairs and couches and things. No worries. The house looks better, and I'm happy about it.

I just want this hospital stay to end so that we can get this surgery over with. I want to get the stupid Philadelphia trip DONE!

Argh.

Friday, October 10, 2008

Objects in the Mirror May Be Closer Than They Appear

Well, his temperature is down, hovering steadily in the 97.7 to 98.2 range, which is good. I'd be happier with the convention 96.7 that he carries around when completely healthy, but beggars cannot often be choosers. His hemoglobin and platelet counts are good, but his white blood cell count and his nutraphil count (the count of white blood cells that actually are useful) is still basically zero.

The plan, at this point, is to discharge The Boy from St. Barnabas directly to CHoP as soon as his counts are high enough to move him. They are very concerned about the pictures taken of his abdomen; the fact that the whatever-they-are's grew from the MRI to the CT is worrisome. They want to initiate exploratory surgery and figure out exactly what the aytch-eee-double-hockey-sticks is going on down there.

The interesting theory that was presented today is that he might have grown a second spleen, which is something that occasionally happens to pediatric cancer patients. Weird, huh? I don't even know what the spleen does. Ahh... thanks to the magic of wikipedia, it turns out that the spleen is involved in maintenance of the red and white blood cells. While I try never to use wikipedia as an actual source, that's plausible enough for the purposes of this particular discussion.

So, here we are again, in the "hurry up and wait" game. Exciting. Frustrating. Agonizingly stressful. Definitely NOT cool, particularly for the borderline OCD personality that I am. We sit around and help The Boy heal and grow his blood and white blood cells. Then, we take him down to Philadelphia and let them cut him open and gut him like a fish.

And, our lives get put on hold yet again. What happens with school? What happens with my choruses? What happens with my son's life? What happens with my wife's life? What happens with OUR lives?

Man, this just sucks.

Last night, I stayed in the hospital. Everything went well, except for the fact that our nurse (who was ot-nay oo-tay ight-bray, if you know what I mean) came back and forth in the room THREE TIMES in five minutes because she couldn't find a thermometer and blood pressure machine that actually worked. The third time was the charm, and he was awake from 3:30 until about 5 AM. Fortunately, he's cute and he's fun with which to play. But, considering that I didn't get to sleep until around 12:45AM, and then was awake at 6:45 to get ready for work, I'm a little punchy right now.

I left The Boy with my father and my younger niece. They had a relatively easy time - he slept most of the rest of the morning. (...the little rat fink...) My in-laws got into town around noon and relieved them. My wife got there at 3 o'clock after school, and I got there after marching band practice. I left there around 10:30-ish, once he was safely asleep. My mother-in-law is sleeping in the hospital tonight with him. I'll take tomorrow night's shift (Saturday night), and The Wife will take Sunday night's shift, most likely.

Tomorrow, I'll be at marching rehearsal and the "dinner" afterwards, then I'm leaving and splitting time between the hospital and home. I feel bad for skipping out on the competition, but I have to take care of myself and my family. Besides my presence at the hospital, SOMEone's got to clean the kitchen, clean the bathrooms, mow the lawn, vaccuum the floors, rip up the junk mail, pay the bills and the rest of it.

Man. I'm excited that the second surgery is going to be FINALLY finished, but I am really, authentically, dramatically not looking forward to traveling to Philadelphia.

Thursday, October 9, 2008

Sausage for lunch?

So, here I am, typing a blog entry in The Boy's crib while he sits on the floor and alternates staring off into space with banging a little plastic drum that we borrowed from Child Life Services. Max Q's "For the Children" album is playing in the background. They were generous enough to give The Boy a full hour (shortened by a visit from the doctors, who checked out a certain body part that has been swollen by 40 mL/hour of fluids for the past 40 hours) of alone time in the playroom. He can't be around other kids right now.

That, actually, makes it difficult. When he'd get cranky before, we'd go for a walk around the floor, looking at the pictures on the wall. Now? We can't, because we don't know why he's sick and because one does not expose a chemo baby to other children if avoidable. (Thank G-d we have the babysitter we have, who is only watching The Boy - and, once or twice a week, one little girl from 2:30 to 3:00.) So, we hold him and cuddle him and sing to him and listen to music and hope that it's enough.

This is a little scary to me, because, for the last hour, he has been pretty inactive - content, more or less, to sit and look around. That's not our baby, who is, while not hyperactive, at least active. Meh.

They've ordered an ultrasound of the aforementioned swollen body part. That has to be cleared with the Valerie Fund Center doctors, and then we wait in line. I'm not expecting anything soon.

The Wife is at home, showering, cleaning herself up, and - hopefully - sleeping. She's going to have to spend the nights here, because the only thing that he's eating is breastmilk. I can't provide that very well. I'm a little worried about her, because she's not a homebody and she's confined to this room. I can handle it better than she can, because I'm more self-entertaining and have more gadgets. Let's see what happens.

Still waiting on a revised surgery date. I think this is going to be a long stay, followed by a longer stay in Philly. I hope this doesn't affect my job too much.

Wednesday, October 8, 2008

What day is today?

It's just the stroke of midnight, and I'm sitting in the computer room, listening to the ESPN Baseball Today podcast, waiting for my brother to call me back and waiting for the diapers to finish in the washing machine so they can be moved into the dryer - and so I can go to bed. Tomorrow morning, I'm going to go to the hospital and relieve The Wife - she'll go home for a few hours to rest and recouperate, then come back and take over. Since The Boy is eating absolutely nothing except for breastmilk, it makes more sense for her to stay the night.

The Boy's fever is dropping, but not steadily. It hovered around the mid-98's all day, which means the mid-99's. That's high, but not incredibly so. Every once in a while, though, the temperature would spike. He's still got that cough, and his blood numbers are absolutely horrendous - a hemoglobin count of 7.1, which is REALLY REALLY low. At 3 o'clock this afternoon, they wrote a prescription for him to receive a blood transfusion. The blood arrived at 9 o'clock tonight. Sigh.

The early indications about Tuesday's CT scan are worrisome. Basically, Dr. Doolan is concerned about the spots he sees on the left side, where the prior surgery was. We know that there was something there - some inflamed lymph nodes or something. It was going to be removed in the surgery. Since the MRI two weeks priot to the CT, those spots have apparently grown.

That's not good.

With luck, it's just the inflamed lymph nodes and / or some type of infection. That's easy to deal with. The issue, if it's a tumor, is that his histology goes from favorable to unfavorable, which means a more aggressive form of chemotherapy. We'd be looking at one extra drug, minimum. (Considering what three drugs are doing to the poor kid, four seems to be bad news.) Depending on the type and formation of the new tumor (if that's what it is), we could be looking at more extreme measures.

So, Dr. Doolan wants to go in NOW and scoop everything out. Except for the fact that, right now, The Boy wouldn't respond well to a major surgery. They have to wait until he's healthy enough - and has good enough blood counts (his absolute nutraphil count is, like, nada) to survive the operation.

Right now, in addition to the blood transfusion, he's getting a medication that will supercharge his bone marrow to produce more white blood cells. This is a good thing, long-term. Hooray.

Our oncologist said that, if everything goes perfectly, The Boy could have his operation as early as Friday. Gut instinct says early next week.

Argh.

I want this surgery over with now.

How am I? ugh. Depressed. Angry. Exhausted, emotionally and mentally and physically. Concerned and worried about The Boy beyond imagining. Worried about my wife. Worried about my job. Worried about doing an acceptable job, at my job. (Although, ego aside, 67% of me is still better than 100% of most people.) Wondering why the holy f&&& this is happening to us, wondering what we did to deserve this, wondering why G-d's plan for me has me following an exceptionally difficult, strenuous and treacherous path.

I'm not hungry, though. My nieces cooked for us, and I'm stuffed with these great little muffins and cakes and chickens and other food. MMMmmmmm.

The Boy has no clean pants left, though. That's what I need for tomorrow. Clean diapers and clean pants.

So much for Philadelphia tomorrow.

We were supposed to go to Philly tomorrow to meet with Dr. Doolan to get the surgery schedule. Scratch that. November, here we come.

Anyway. It's 2:15AM, and The Wife and The Boy are asleep together on the inflatable bed. (Incidentally: if you're sleeping in a hospital, and you are not the patient, bring one along. WOW, it makes a big difference.) My choices are: sleep in the chair or luck into a family sleep room until 6, when it's time to get up, get ready & go to work; drive home, fall asleep around 3, and sleep until 6:40, quick dress & stop at Quick Chek on the way to work for an extra large IV bag of coffee; bite the bullet and stay awake four more hours and just suffer through the work day before crashing at home for a few hours before coming back to the hospital.

The latter would be my choice if I had gotten more than four hours' sleep last night to go with my hour-long nap this afternoon. Sigh.

Man, this sucks. There is no alternative here that is going to allow me to function coherently over the next few days.

Interestingly enough, we're in the same room we were in last week: 4311.

I'm going to work tomorrow, so please don't call my cel. It's for emergencies only, okay?

Tuesday, October 7, 2008

back and forth, back and forth

the CT scan went fairly painlessly today. It was done quickly, even though we didn't get home until noon because we had to wait at the Valerie Fund Center for the cd of the results. Whatever.

Then, right in the middle of my chorus rehearsal, his fever spiked to over 100 degrees. So, we are at the hospital again. He will be here for at least 48 hours. I will be going to school tomorrow, even I really don't want to go. Idont want to leave them alone - again.

This just sucks.

Anyone wanna bring a decent dinner to us tomorrow (Wed)?

Monday, October 6, 2008

One Day More, part XVI

Tomorrow is The Boy's CT Scan, which will be interpreted and will help everybody involved schedule his surgery. It's also the official Week XIII of chemotherapy, which is only bloodwork done. Not that he hasn't had bloodwork done every three days over the past couple of weeks... but, whatever. Time to make the donuts.

The Wife and I had another long talk last night about the progress of things. Basically, she's wondering if we'd be better off by her taking November, December and January off from work, under the Family Leave Act. As it stands, we've been missing about 1.5 days per week of work, between anticipated and unanticipated hospital visits. If we're already taking that much time, AND if we're going to start running out of sick days soon, AND if we're making our students' and our colleagues' lives more difficult, then wouldn't it make sense for her to take the time away from school?

Benefits: we know the baby will nap and drink as much as is needed. He loves napping for us, and he loves nursing. We know that he'll be taken to the hospital as needed, and we know exactly what to look for when monitoring his health on a daily basis.

Drawbacks: an extraordinary work week for me during that time, significantly less money coming in and loss of momentum of her program, as a new teacher won't be comfortable for the first month or so of work. Assuming they are able to find someone competant, which is no mean feat.

I don't know. I wonder if we need to do it. I mean, we have an attentive babysitter who is not watching other children. We haven't asked her to do much of anything for him other than take his temperature and apply diaper rash cream. We haven't asked my father, brother or sister-in-law if they'd be willing to take The Boy to any hospital visits. My father doesn't do diapers; we know that. It's a generational thing - Depression-era men have difficulty with some things. But, would it be a big deal for him to pick The Boy up from the babysitters and take him to the hospital, where The Wife will meet him after work? I don't really think so. Same thing for my brother or his wife; she already works at Barnabas. Maybe she takes a longer lunch a little later and meets the babysitter at Barnabas to watch him, or something like that.

The bottom line is that we haven't really explored the options of the people who have expressed multiple offers to help. Now we're at a time when we're starting to really need it. I feel amazingly overwhelmed and stressed out; judging from the fact that I gave an unnecessary hard time to three sections of band today, it's affecting me professionally as well as personally. Maybe it's time to ask some people to take a ride to Barnabas for us, to help out.

My in-laws are coming this weekend, after a second grease fire in a year or so has totalled their kitchen and a good chunk of the rest of the house. In an ironic twist to the college years, they are bringing their laundry with them this weekend. They will likely stay until the surgery, assuming that it is early next week as we anticipate.

On the cute side, The Boy has started rocking back and forth to music while sitting or standing. He also flails his arms, more or less in rhythm with the beat of the music. On Friday night, I had Van Halen's album "Van Halen" playing - bought it on Amazon for $2, thankyouverymuch. He was going nuts, dancing back and forth to the music. He's also starting to clap in rhythm with what he hears, when he focuses on it. It's REALLY cute.

Should we be worried that he's not walking or saying more words than mama / dada? or standing?

Sunday, October 5, 2008

What's Happening, eh?

So, Friday night, we all fell asleep around 9 or 9:30 and slept through until 8:30 the following morning. The Boy and The Wife came and ate lunch with me at the football game, which was lots of fun - he climbed all the way up the steps of the bleachers by himself, which was cool to watch. Last night, we got some good playing in after the football game - The Boy has now mastered the trick of reaching inside the silverware drawer and grabbing stuff. While this is a neat trick, it's not something that we want to encourage right now.

Today, as my wife put it, was a "pukey day." We gave him his anti-nausea meds at the appropriate times today, but it didn't help. Two of his throw-ups were just him bringing up (and spitting out) mucous or phlegm - the remnants of his cold, we assume. The other two times were bringing up food. This essentially means that, likely, he's gone another day without eating.

Okay, one of the times was likely my fault. We went to "Our Town Day," which is down at the end of our block. They cordon off the street and put up bouncy rides for the kids and have booths with crafts and yummies and other junk. It's lots of fun! I bought some zeppoles, because the fried dough levels in my bloodstream were far lower than they should be. I gave The Boy a bite of one of the zeppoles, and he puked. Fried foods are probably not what he needs right now. Lesson learned.

Anyway. The CT Scan is on Tuesday. The surgery might be next week.

The Wife is starting the procedure to find out how to take advantage of family leave. We're talking about her taking November, December and January off - essentially the end of The Boy's treatment. We figure that, if one of us is taking a day off every week due to sickness or doctor's appointments, then it's likely fairer to our colleagues if one of us is just home.

I'll have to pick up more lessons, similar to what I did last year - but not too many more lessons, because I'm making more money than The Wife did last year.

Oh, boy - more 60 hour weeks, post-marching band. Still, it does mean that we'll get more family-baby time. Plus, while our babysitter is awesome, The Boy will be better off with Mommy than with anyone else (with the possible exception of Daddy, but that's a discussion for another day).

The in-laws are coming this weekend and will likely stay through the surgery - assuming that it's next week, as anticipated. More than likely, the surgery will be late in the week or in the following week, because hospitals do not move quickly on non-emergencies. (REALLY quickly on emergencies, which this - fotunately - isn't.)

Friday, October 3, 2008

They're home. They got a lift from the Valerie Fund Center shuttle and arrived home around 2:45 or 3:00.

They unhooked his IV around 1-ish and observed him for another hour before they left. The doctor told us that the CT Scan would proceed as planned on Tuesday morning (at the buttcrack of dawn), with the surgery happening on the following week (around the 13th or so).

Basically, we need to be more concerned if the sickness persists past a day or two. Make sure he drinks fluids, is eating and that sort of thing. The coughing can't be helped, really. Pediatric cough medicines don't do anything except drug the kids.

I've stopped home to say hi and to distribute hugs before heading back to marching band practice. The Boy seems... well... normal. He's trying to play with every single toy that he left at home, and he's frantically crawling around the house, exploring everything. I don't blame him: the hospital room is extremely confining, and we don't want to let him crawl around on hospital floors if at all possible, particularly with a depressed immune system.

Wow. We are tired. Not cool. Looks like we'll all be in bed around 7:30 tonight.

Long Day Ahead...

Got back in the house last night at 1:15AM. Fell asleep around 2:20, woke up at 6:10 to get my day started. Six periods of teaching, three hours of marching band (maybe), then to the hospital. Or, six periods of teaching then to the hospital. Or, some lower number of periods then to the hospital.

Damn. I hate not knowing ANYthing.

Thursday, October 2, 2008

Craptacular Afternoon

Well, things went from bad to worse.

After I posted my blog, I got a telephone call stating that The Boy had lost his lunch again, and the babysitter wasn't able to get ahold of The Wife at work. (Not surprising - it's really, really difficult to find a teacher at school unless you call the main office and have an emergency page sent out, which doesn't help anybody most of the time.) The Wife called about 45 minutes later, letting me know that she was checking him in to the Valerie Fund Center. I skipped out on marching band (calling first, thankyouverymuch) and joined her for the trip.

We arrived at 3:55 and were ushered into the pediatric emergency room. They hooked him up to IV fluids (the nurse there was very, very good at getting the port accessed - she did it a lot better than some of the nurses at the VF Center, who do it all the time) and zofran and left us alone.

At 5:00 the night shift checked in. Boy, did they scrape the bottom of the barrel for the Thursday night shift.

Basically, making five hours of hospital time into one paragraph of material, they ignored us. I know that we weren't a life-threatening case - The Boy was not going to die immediately - but we were, frankly, ignored. The results of the tests had been in for over an hour before I finally flagged a nurse down at the front desk for information. (Side note: The Boy pushed the nurse call button while playing at around 6:45. No nurse came in until after 8:30.)

They are checking The Boy into the hospital overnight to receive fluids. He is throwing up everything that he swallows - he even uked up a cracker and some apple juice! They want to pump him full of fluid and zofran to give his stomach a rest. The Wife is going to spend the night and the day with him. I'm assuming I'm going to school - I'm at least going in for jazz band auditions, and I'll play the rest of the day by ear. If I have to leave, I'm leaving. I've been given carte blanche (mostly) to do that.

Well, my computer just crashed. Thankfully for autosave... anyway, it's 11:15PM. I'm leaving now to take The Wife clothes, the air bed, the booby pump, some books and some snacks. Then, I'll be home at around 12:30 to go to sleep, after I take the garbage out.

Man. This just sucks.

Frustrating...

Just when we thought we were over this whole cold / viral illness thing, here we go again. Yesterday was not fun.

The Wife stayed home from religious services yesterday - something she did very reluctantly. Growing up Christian, I kind of liken Rosh Hoshanah / Yom Kippur / Passover to Christmas and Easter. Even if you didn't go to church, you still went on Christmas and Easter. Rosh Hoshanah is sort of like that. Plus, it's the only Jewish holiday whose story is NOT, "These people tried to kill us... they failed... let's eat." So, she likes to go to services on these days in particular. The Boy was feverish, clingy and not feeling well, so she stayed home.

It's very frustrating, because - in a wierd sense - I almost wish he was sicker. This cold, like the last, is turning out to be an extreme annoyance and inconvenience and frustration, but not something that can be helped medically. If he was sicker, we could take him in to the Valerie Fund Center and get some medicine, or fluids, or blood, or whatever. He isn't, so we can't. We call and talk to the doctors, and they us, "He's got a cold. Call us back if he fever goes above 99.4 below the arm." It's hovering right around 98.6 to 99.1, which is in the "safe but sick" zone. He spent this morning spewing out of both ends - top and bottom - but there's nothing that can be seriously done about it.

It hurts, to be honest. I find it very difficult to concentrate on work, housework, marching band, singing, ANYTHING other than my sick baby. I know that these little colds are part of growing up, but it feels worse when I know that my little dude has no immune system with which to fight the infections. What should be a 24 hour cold turns into a week or two week's worth of suffering for him.

Man. I had two days off from school and feel more tired than I did before I left school on Monday. Yesterday was just brutal, and Monday - with six hours spent in the hospital - was just as bad, if not worse.

Thankfully, I got some of the housework done yesterday. I spent a solid two hours stripping out and cleaning the kitchen and dining room, then some more time straightening up, putting clothes away and doing the basic yard work - a little bit of weeding (before the weeds finish organizing their strategic defense force, which was starting to make motions in the UN about annexing my house), mowing the lawn and trimming the rose bushes. My wife did the upstairs bathroom and folded the laundry.

Man, I'm ready for the weekend already.

Wednesday, October 1, 2008

Here we go again, again...

His temperature this morning was around 99 under the arm (which is 100 not under the arm), and he has been sneezing, coughing and suffering a runny nose all day today. His temperature's come down since the morning, but the other symptoms have persisted.

Argh.