Friday, April 30, 2010

Denied...

Taken away from the water fountain at the Blue Slide Park, The Boy decided to throw a fit. He went down on his hands and knees, preparing for passive resistance by going limp on the ground... only to realize that bare knees and bare hands on concrete hurt.

Fit aborted, Musical Daddy is amused. Back to sliding.


- Posted using BlogPress from my iPhone

Location:English Ln,Pittsburgh,United States

Weird Feeling

Yesterday, we got home from school to discover that Younger Bro - you know, the one without cancer - had a 101 degree fever. Still eating well, still drinking, just grumpy, out of sorts, and with a fever. Grandma's words of wisdom: "Dont forget, this is a normal child."



With all of the medical knowledge that we've accumulated since The Boy's diagnosis, we've never dealt with a normal baby. This is right about the time in YB's life that The Boy was diagnosed. This means that, for all intents and purposes, we're first time parents again.

With The Boy, a fever means do nothing, give him nothing. Keep him warm, give him fluids, and get him to the emergency room. Normal kid? Call the pediatrician, talk to a nurse, and give him some Tylenol. Maybe.

What a weird feeling: kid with a fever, so no immediate action required. No life threatening illnesses and infections, just a normal baby with a cold.


- Posted using BlogPress from my iPhone

Location:9th St,Pittsburgh,United States

Wednesday, April 28, 2010

Comic Book Store!

One of my favorite activities with The Boy is the weekly trip to the comic book store. Assuming he's in a decent mood, it's a fun time for everyone involved.



We walk up the stairs, pointing out all of the people along the way. His favorites are Batman, Aquaman, and Spiderman. Why Aquaman? The Brave and the Bold cartoon has a brilliantly over-the-top-dramatic Aquaman. At the top of the stairs are two display cases, one with little statues and the other with superhero themed drinking glasses. He likes those, too.

In the store, he'll sometimes follow me through the books and point out the comics of the people he knows. Then, he likes going to the back of the store and playing with the discount posters - he will take the hat off of my head, proclaim "Bop!", and tap the poster on my head. Very cute.



He'll look the the action figures and the t-shirts, then run around for a bit, then complain loudly when we leave. We'll usually point out different people on the way down.

Then we go to Starbucks. I get coffee, he pulls a juice from the little open fridge.

Today, all four of us went to the comic book store, then out to eat at Lulu's Noodles. No Starbucks -noodles! It was a nice day. He went to sleep tonight around 6:45, and has basically been asleep since. 4am playing, maybe?




-- Post From My iPhone

Location:7th Ave,Pittsburgh,United States

Friday, April 23, 2010

Insult?

A student just yelled in my general direction: "Your butt stinks!"

Um, well, yes, it probably does. Very few butts smell pleasantly. It's what a butt is for, no?

Should I take that as an insult?


-- Post From My iPhone

Location:9th St,Pittsburgh,United States

Thursday, April 22, 2010

A Blast from the Past...

As I sit and listen to my "5 Years Ago" playlist (the stuff I haven't listened to in more than 5 years), I got the whim to look at my myspace account, which I haven't accessed in... I don't know when. I'm not entirely sure I keep it, except for the fact that I kept a blog on it for a good, long time.

(Side note: anyone know how to collect blogspot / blogger blogposts quickly and easily? I think I'd like to compile / back-up my blog, so that my kids could read it later in life.)

When I looked back at the last couple of entries before I transitioned to posting full-time here (and not cross-posting to both), I came across this, dated September 28, 2008: This is four months after diagnosis, before the relapse was diagnosed.

"The Boy's doing much, much better than last week. We were absolutely terrified last weekend because of his temperature; after spending all day in the hospital with Molly on Monday, The Boy really turned the corner the next day. Basically, he had no working white blood cells in his body on Monday morning (much less Saturday and Sunday, when he was struggling). They pumped him full of fluids and antibiotics at the hospital, and that did the trick. When Mommy took him back for chemo on Thursday, they - predictably - didn't give him the meds, because his counts weren't high enough. I'm taking him on Tuesday, during the first day of the Jewish holiday, when things are - hopefully - back to the numbers they should be. We'll see. Basically, he'll get chemo on Tuesday and have his CT Scan late this week or early next week - this will likely get the surgery sometime in October.

Not ideal - it's hard missing work when you're a teacher. You only see kids a certain number of times per year, and no substitute can possibly do the work correctly. I'm not valuing my job over my child - not even close - but I don't want to put my kids in a bad position. Then again, considering how I usually teach, they'll be okay."

Whew. I wish I could go back and talk to myself, because there's a WHOLE lot in there that just blows me away. Neutrapenic fevers as simple as that one - one day in the hospital - were the exception and not the rule. Soon after would start The Boy's new treatment, and a few months after that, a long string of hospitalizations that would take the majority of 5 months away from us.

Also, I was dead on accurate about missing work. In education, administrators will say all the right things about having to miss time due to family illnesses and your own illnesses - until you actually have to miss time because of family illnesses and your own illnesses. I was run out of town on a rail for daring to use my sick days on my son. I didn't run out of sick days - far from it - but was scolded for using them.

Any wonder why I'm not in a rush for a full time job? I'm still feeling scarred from my last one.

Lotta water under the bridge since that point, 18 months ago. Lotta bridges I burned, lotta bridges that were blown up by others. Lots of people who gave their hearts and souls to help us; a few others that I truly hope will burn in Hades for eternity for - as my therapist put it on Wednesday - raping my career.

The fallout since then? Two surgeries, one port replacement, radiation that didn't give super powers, one baby brother, a major family argument, loss of several friends, two jobs, one house, relocating 360 miles away, and a change in barbershop status. Life is so much better.

I don't know what I'd say to myself back then, I guess. Probably just to stick it out, because things do get better. Treatment ends, boys grow, babies stop crying, and jobs can be rediscovered. Snuggles are eternal. Yankees win World Series.

Hey, The Boy even pooped in the potty for me today. Despite the fact that I still feel like crap, life is good. Back to the grind tomorrow.

Stinker.

Second day in a row... The Boy comes into the bedroom, where I'm recovering from a nasty viral thing. "Watch Thomas with Daddy?"

Sure. That's okay, because I don't have to move. Both times, he's cuddled up against me and been asleep about 35 seconds after Thomas meets Hiro.

Isn't it wonderful, that all he wants right now, all he needs for happy rest, is to snuggle with Daddy?


-- Post From My iPhone

Tuesday, April 20, 2010

How does he know?

The Boy never ceases to amaze me. I woke up sick this morning, but went to work anyway - I'm trying to be a more normal teacher and take few sick days. So, by the end of the day, I was destroyed. Just exhausted and more useless than normal.



So, what happens when I get home? The Boy takes me by the hand, brings me upstairs, and puts me to bed. The two of us have been napping for almost two hours now. I really believe that he knew I needed the rest and helped me!

Granted, I told him the following a little bit into our naptime: "You know, The Boy, you help Daddy feel better when he's sick by snuggling, just like Daddy snuggles you when you feel yucky. Thank you."

Kids know. I'll never forget when my niece was 3, and I came home after breaking up with a girlfriend. She climbed into my lap and wouldn't leave me alone until I started feeling better.

They just know.


-- Post From My iPhone

Monday, April 19, 2010

Typical Monday

So, I left for work around 6:20 this morning - stopped off at the gym before heading Downtown to teach. The boys played a little bit of whack-a-mole with Mommy in the early morning, popping awake at random times for random reasons. Lucky her.



The Boy went into the clinic to get counts today. His hemoglobin was a little bit low on Friday, but they didn't transfuse because he was Little Crazy Man. It was higher this afternoon, so we're clear. After clinic, Mommy took the boys to the park until I was ready to be picked up at the bus station.

When we got home, I had some nice play time with both boys. Younger Bro has been much more interested in me lately, and we had a nice bonding session as he ascended the stairs. That boy loves him some stairs... The Boy behaved like a two year old at dinner, freaking out about everything, but we had some nice Thomas with Daddy time after. Then I went to sing.



Tomorrow, same schedule, without the clinc visit, and it's Mommy's turn to go out and play. The Boy is now talking in his sleep, so I'm going to snuggle a little bit and keep him calm.


-- Post From My iPhone

Sunday, April 18, 2010

Restless Weekend

This was truly a weekend-on-the-go! Since Friday, we've driven back and forth from Washington, DC, and I've even sung a quartet gig. Not a lot of sleep or rest this weekend, which isn't exactly a bad thing. The Boy has slept a decent amount, which is good because he's growing.






The Wife and I had an interesting conversation in the car on Friday: we're going to have to start paying attention to The Boy's diet! While he was on treatment, we wanted him eating everything possible. It didn't matter if he ate a lot of sugars and starches, because he needed lots of calories for his body to recover from the torture it was experiencing. Now? We want to mitigate the dietary habits before they become bad. Less juice, more water. Keep the sweets out of the house except for special occasions (like using the potty, which happened again today). Begin pushing veggies. While it's nice that he loves noodles and ketchup, and cheese, it's time to diversify. Less chips, more other stuff.

My toiletry bag is finally unpacked, for the first time since, literally, April of 2009. There's suddenly lots more room on the bathroom countertop. Weird. Between that and the thought that we can go away for the summer....






The Boy is developing definite tastes in music. On the trip this weekend, he only wanted to listen to two things: "Woody and Buzz song," which was You've Got A Friend In Me, performed by a wonderful barbershop quartet on their children's album: Max Q, For the Children. The other song? "Bad Horse," from Dr. Horrible's Singalong Blog. Good taste, that boy, but hard to explain to his teachers. We did play other music, but it was a challenge.





-- Post From My iPhone

Location:Reynolds St,Pittsburgh,United States

Saturday, April 17, 2010

Careful What You Wish For...

So, we love that YB loves to sleep in his crib, as our bed doesn't have enough room for everybody. So, when we got to the hotel late last night while in DC to visit Aunt Peggy... Younger Bro wouldn't sleep in the Pack'n'Play. Oh, boy. Screamed loud enough to wake The Boy, which is tough.

Thankfully, Grandma did her thang and helped get him to sleep, or it could have been BAD. Ugh. Next time... bringing a U-Haul with a crib. (j/k)

Here's YB chewing on me. He was sitting on the floor, crawled up to my feet, and chomped. Yowch!



Fun: two babies, one bathtub. Wet, but fun. They're big enough - and The Boy is off treatment - so we can throwthem in the same tub. w00t!



-- Post From My iPhone

Location:Maryland 355,Bethesda,United States

Tuesday, April 13, 2010

Emerging Into the Sunlight




We're not done. But, we're close. No more chemo; just a couple of scans, removing the port, starting regular visits to the renal clinic, and regular trips to the oncologist.

Weird. And, sudden. I feel like those people who emerge from the ruined buildings, blinking at the unexpected sunlight, wondering what the hell just happened.

Does this mean that I can keep my son?

Too big. Can't think of that.

Does this mean that we can train him to sleep in his own bed?

Mmm. Closer, but not really.

Does this mean that, for the first time since April of 2009, that I can unpack and put away my toiletry pack?

Whew. That I can comprehend. That's heavy.

Does this mean that, this summer, I won't need jeans and long sleeve t-shirts for the hospital? Maybe.

No more nupogen? w00t!

Buying shampoo for The Boy?

Taking a week's vacation?

Unpacking my always-packed emergency bag?

Lots to consider. Still haven't taken it in. Freaky, dude.


-- Post From My iPhone

Location:E Busway,Pittsburgh,United States

Monday, April 12, 2010

Meeting with oncology.

This is a cross-post. I'm sure we'll both have plenty more, individually, to say on the subject.

You could click this link, or you could just read this:

This afternoon, we had a nice long sit-down with The Boy's oncologist to go over all of the components of our next new normal.

He reiterated that the doctor who had conducted the studies with the original regimens that The Boy had been on--both the initial DD4A regimen and the Stratum-C relapse protocol--saw no major differences among kids who completed only some of the protocol vs those who completed more vs those who were able to finish. What The Boy's doc told us this time that didn't come up last time is that this same doctor is now studying late effects and follow-up, so he is REALLY the guy who confirms that we're doing the right thing by stopping treatment.

In terms of other cancers, or the same type of cancer: If The Boy were to suffer a Wilms relapse, they would have an additional plan of action for him. I don't know what it is, but the doctor said that there is a next step in place. We'd be even in less of a bind than we would have been a few months ago had the spot on his liver actually been cancer. As for secondary malignancies from either the chemo drugs or the radiation, the doctor reassured us that The Boy has only a slightly greater chance than the general population of experiencing that. It isn't as though we are waiting for it, knowing that it will happen. He said that it probably won't.

The immediate follow-up items on the agenda are as follows: Pentamidine this week (that is the IV antibiotic that he gets every month or so). Schedule a CT Scan for this week or next, depending on when they can fit us in. Get an appointment at the renal clinic. Probably do another GFR.

The kidney function is still a very interesting piece. The next GFR could reveal that his function has gone down. Or up. Or stayed about the same. We wouldn't be surprised by any of those things. We have to have The Boy followed by that team very closely, as those issues have not magically disappeared.

More long range follow-up items: The Boy will get a second CT scan about 3 months after the first. Following that, he will have ultrasounds and probably X-rays for his followup scans and a CT only if something looks suspicious. The deal with the CT scan is that it exposes the patient to radiation, much more than X-rays, and there have recently been rumblings about not wanting to expose children to too much of this if possible, so I'm sure that's why we're going to ultrasound so soon.

He will still see the oncologist about every month for awhile. The port will stay in through his CT scan, and if the scan is clear, the port will be removed. Until the port is removed, pretty much every medical issue that The Boy may have will still go through oncology. We'll start to call his primary care physician for things as The Boy gets further away from the port removal.

As for The Boy's vaccinations, and Meatball's as well--we wait. The ones that Meatball has already gotten were not live virus vaccines. The ones coming up are. And The Boy has never had those vaccines. Likely, the kids will be on the same vaccine schedule, as they currently have had the same ones.

Medications--we're down to Enalapril and Sodium Bicarbonate. We don't give Zofran anymore (although I will give it before he gets Pentamidine because I've heard that it makes the kids nauseous), and he never needs Isradipine. We just took Pepcid off the list, although I don't want to get rid of it right away. My mother said that her acid problems got worse after chemo and she still takes something for it, so I'd like to keep the Pepcid around should The Boy need it.

He is allowed to swim. He can eat whatever he wants (although more caution should be taken with sodium and potassium). He can play with kids. In the Fall, we could both go to work. Not sure if we both will, at least not full-time, particularly if we don't get anything good.

We have to get used to saying that The Boy HAD cancer. We're hoping that he doesn't have it anymore. He is OFF treatment.

Sunday, April 11, 2010

A Nice Weekend

Today was another nice day. Uncle C was in town, so we had a barbeque on the back patio; Grandma has embarked on a home improvement plan over the last few months since we got here, and besides reinstalling the swingset, she helped us get the sandbox and play house, got new railings put on the raised patio and new outside furniture. Neat, hey? So, we bbq'd.



Today, they went to a baby naming while I exercised and played video games with Uncle C. After a violently needed nap time, we went to the comic book store, Coffeebucks, and park - a different park, this time. Fun! The Boy climbed up a ladder and went down slides, and Younger Bro enjoyed the slides.



Tomorrow, we have The Meeting with the oncology team about The Boy's future. I know that this is a different sort of meeting than the last couple: the original "Your Kid Has Cancer," then the "Cancer Relapsed," then the "His Health Sucks and We Need to Talk About It" one. We've got a bunch of questions: other side effects both medium and long term of his chemo, possibility of unanticipated hospitalizations now that he's off-treatment, immunization resumption for The Boy and YB, travel restrictions for summer break, and the possibility of things like gymnastics or baby classes and preschool.



Anything else we're missing? Scan schedules, obviously. How long he'll be on his current meds. Possibility of worsening symptoms in other health aspects. The form that the next phase of kidney deterioration will take. How to recognize relapses of they're starting.

Sigh. He's been so nice and fun for the last couple of days! I don't want to think about the other stuff.


-- Post From My iPhone

Location:Reynolds St,Pittsburgh,United States

Friday, April 9, 2010

On the Road again...




"The Boy, would you like some banana bread?"

"Nana bed... ummmm... No!!!"

Mommy cuts herself a piece of fresh-baked banana bread. Little voice says: "Want cake! And Elmo spoon, pease!"

Sigh.

The latest potty practice: taking the little alligator bath toy, filling it with water, then running it to the toilet to drip in the potty. "Look! The alligator is going potty!"


Yesterday, he wouldn't nap with Barbara, so she put him down on the reclining chair. He fell asleep on the chair; not the back of the chair, just curled up in a small ball on the seat.

Yesterday, he also talked on the phone for the first time, to Aunt W. It wa very cute. "Hello, W! How are you?" That was about it, but it was worth it.


-- Post From My iPhone

Location:5th Ave,Pittsburgh,United States

Tuesday, April 6, 2010

Special Boy...

I know that most parents believe their kids are special, but The Boy truly is one in a million. He's just... well, keeping such a peaceful, loving, fun attitude about life even through his adversity really gives me hope about the future for him.



Today, we were playig with the driveway chalk in the front of the house when The Boy got bored and decided to take his wagon (the little yellow one from Erik that holds his chalk) for a walk. We walked down a couple of houses, when he stopped and ran into the yard. He approached some flowers ("Oooh... Daddy, purple flowers!"), took a big sniff, and said, "Mmmmmmmm!!!"



This is cute becausethe flowers were odorless and about five feet away from him.

He proceeded to exam this bed of tiny purple flowers before excitedly pointing out the one white flower in the middle. He examined the flowers around their whole lawn and garden, including squeezing past their cars to get to the edge of the driveway. When I wouldn't let him in the backyard to putter about, he engaged in passive resistence and flopped bonelessly to the lawn. I walked away and hid behind a bush until he noticed I was gone and came looking.



When I dumped him on his bed a little while later, he started leafing through his books and reading the stories out loud to himself - well, the memorized parts, anyway. Tonight, he wanted an excerpt from Mary Poppins (the Uncle Albert bit from the actual book) twice, "Goofy, Movie Star," Spider-Man and his Friends, and the Ralph Cosentino Batman: The Story of the Dark Knight before quickly falling asleep.

Funny, special boy.



-- Post From My iPhone

Sunday, April 4, 2010

A Nice Day





It was a nice day, even with the amazingly rough start. Cutting through to the highlights, we took the boys to the Pittsburgh Zoo. They had a nice sale today: bring in an old set of prescription glasses and get a free admission. Grandma generously donated some glasses to the cause.

Neither boy was particularly interested in the animals. The Boy did a bit of looking and a lot of walking and climbing on things. He was entertained by the sea lions, laughing at some of their antics and sounds. He wa entranced with the elephants; he first wanted to climb the fence and pet them! Later, where the elephants eat area allows you to get up close behind some plexiglass, and he was fascinated. Score!





He was moderately interested in the bears and uninterested in the monkeys. He like the tiger, a bit. Didn't care about the sharks, but enjoyed watching the polar bear swim up close to the glass where we stood.

Younger Bro did some looking around but mostly slept in Mommy's carrier. Very cute. Here's a pic of the little bear with a real bear in the background:





After we got home, he slept for about four hours. I tried to get him up a little early for dinner, but he was angry and inconsolable. After another half hour rest, he was fine. Grandma theorizes that we're starting another growth spurt.

I just hope that he sleeps better tonight. I'd like some growth; he's been at his current height for a while. I'm looking forward to his hair coming in, if for no other reason that stopping hearing other, littler kids say, "Look at that baby!"


-- Post From My iPhone

Location:Reynolds St,Pittsburgh,United States

Fun night

We're listening to The Boy read his Batman book out loud. It's very cute, listening to the parts he's memorized, particularly the parts where I'm imitating the voices of the characters. Besides, how many kids, at 2 1/2, know the contents of the Batcave and can identify the Joker, Penguin, Catwoman, and Two-Face?



I'm more of a Marvel guy, so he's also got a good handle on Spider-Man, Silver Surfer, Wolverine, the Hulk (my fave), and Iron Man (my other fave). Super-heroes are awesome, and their modern mythology teaches good lessons.

Now he's moved on to Tubby the Tuba. Still cute.

Last night was awful. He woke up screaming every two hours. We're not really sure what caused it; the first one was likely heat. He peed through four diapers overnight, which is also somewhat concerning. We gave him Tylenol at 2am, which seemed to help, but not enough to prevent wakeups at 4 and 6.

We eventually capitulated and put on Mary Poppins and Thomas to help him calm down. It did help some.

This is the scary part: what's normal? What is appropriate for a kid his age, and what could possibly be cancer and chemo effects? Welcome to the new struggle...


-- Post From My iPhone

Why is it...

That a sleeping The Boy takes up so much more of the bed than my wife and me, put together? Sigh.



Another nice day today. I finally put the sand in the replacement sandbox, and The Boy discovered the joys of burying himself in the sand and of getting really, really dirty. Good stuff, there. He's also starting to play with the other stuff in the swingset, like the pirate telescope and ship's wheel. Not sure if he gets it, though.


Gotta go - he's screaming in discomfort now. Not good. Not worrysome, yet, but we'll see.


-- Post From My iPhone

Location:S Dallas Ave,Pittsburgh,United States

Friday, April 2, 2010

Reaction 2: Oh, Crap.

The second reaction is a much, much darker reaction than the first. The stopping of chemotherapy is a joyous event; as my wife put it, "It doesn't escape us that the reason for discontinuing treatment is that his kidney has been so damaged." Ultimately, if his kidneys were healthy, if they were able to stand up to the treatment, then we would be just finishing up carboplatin and starting the etoposide. He's likely looking at a lifetime of dietary restrictions, kidney care, and excessive medications.

Side note: at St. Barnabas, they had no intentions of reducing dosages or discontinuing treatment while The Boy was still breathing. Scary, no?

So, what are the real difficult parts?

- cancer recurrence. Now that he's no longer receiving chemo, if any cancer is left in his body, it'll grow back. Now that he's not seeing doctors once a week, will things start to change?

- cancer spread.

- chemotherapy-induced leukemia. A possible / probable side effect of the carboplatin in particular.

- kidney failure, dialysis, and transplant.

- continued hearing loss.

- Continued motor delay.

- Growth side effects due to the radiation and to the chemotherapy.

- Continued treatment of Wilms Tumor side effects.

- possible Red Sox fandom. (This one's a joke.)

Okay, so he's not getting chemo. That's great. Here's some of the other stuff with which we're dealing. As my wife put it, also, if we're not reacting enthusiastically, it's because we're not out of the woods yet. We're not particularly close to being out of the woods, but at least we're closer than we were earlier.

Where've we been?

Longest gap of time since I've started blogging was from March 22nd to yesterday. As all of us lapsed bloggers say, I meant to say lots of stuff... but, you know how life gets.



Work's been a bit of a killer. I'm struggling my hardest to learn the curriculum, learn the students and their names (not my strength), learn the school, learn the public transportation system, write lesson plans, create learning materials, learn the school's technology, etc. Tough time for me, but things are going reasonably well. Today, I graded a stack of papers about six inches thick. It took me a couple of hours.



We had an unanticipated hospital stay last week - a two-day affair because of blood in The Boy's urine. That's obviously quite concerning, considering that his remaining kidney is already under incredible stress. The condition cleared itself up quite quickly, resulting in only one night in the hospital.

We obviously didn't make counts last week, at all. It was platelets.



Passover was spent in Harrisburg, at Aunt M's house. It was a wonderful, wonderful time! Their house is wonderfully set up for kids and for visitors: we had the entire third floor of the house, which consists of two bedrooms and a bathroom. The Boy had access to the basement, with a play house and a bunch of little person toys. He was in heaven! He came to the Seder tables with us when he wanted, and played when he didn't. We left on Wednesday morning to get to the clinic for admission for what turned out to be... well... no chemo.



We had several nice afternoons, last week, of going to the park after work. The Boy has been going down the big slides for the first time, which is awesome. He's also had a great time with the swing set, which has been ported back to our house here in Pittsburgh from our old house in New Jersey.



More reactions later. Our heads and our hearts are still spinning.

Reaction 1: WTF?

First reaction: Huh? What?

When Dr. Graves told me that we were stopping chemo, it floored me. Obviously. (That doesn't take special insight to figure out.) We knew this was coming, and the latest round of tests indicated to us that it would be coming sooner rather than later. We had no indication that it would be happening NOW, that they would just send us home instead of giving us chemotherapy.

That was actually really difficult. The Wife and I were keyed up into hospital mode: keep positive spirits, prepare for long periods of time doing nothing, prepare for long periods of time being spent chasing The Boy around and keeping his tubes out of trouble. Prepare for running back and forth to the playroom, with some occasional trips to the 6th floor outside garden and maybe to the gym for physical therapy. Lots of watercolors, lots of markers and crayons, lots of Thomas the Tank Engine and Mary Poppins. (What a team-up, there - I wonder if Mary Poppins ever visited the Island of Sodor?) Prepare for not seeing each other much, except in passing as we hand children back and forth. Prepare for phone conversations instead of real-life talking, and prepare for sharing a twin sized hospital bed with a little boy rather than the nice, comfy queen-size with my wife and a little boy or two.

And then - home in time for dinner. Huh? That's a lot of emotional energy left with nowhere to go. That's a lot of planning and preparation that vanishes into vapor. Don't get me wrong - we're happy about it, but also more than a little bit confused. I expected to be waking up right around now and preparing a breakfast plate for The Boy, doing the every-other-hour thing with his diapers and waiting for the never-ending parade of nurses, nurses' assistants, residents, doctors, and specialists to come through.

And, all of a sudden, things start to open up. I've started to consider - and to discuss - things that haven't really been on the docket for a while. Does this mean that The Boy will be able to attend some sort of preschool? Play with other kids more regularly? Does this mean that both my wife and I can work (well, one of us part-time) next year? Does this mean that we can actually start saving for - and planning for - a house?

Does this mean that we can start living our lives?

Thursday, April 1, 2010

The Light at the End of the Tunnel...

Well, we just got the news. Chemo is done. As in, no more chemotherapy for The Boy, period. The GFR result was 44, which is a 30% reduction from the previous result. The cause of that reduction was likely the carboplatin, which would also be given in this round of chemo that was just aborted before it began. Dr. Graves couldn't justify giving the carbo this round, and his research into an etoposide-only chemo leads him to believe that that would be just as bad. So, bam. We're done.

Understand, this is amazing news. This is a huge chunk of our life that we, for lack of a better term, just got back. We're not done with the cancer by any stretch, but we're coming out of the tunnel and into open air. We have a meeting with the doctors on the 12th (Monday) to determine the next phase of care: several scans, then removing his port, and constant attention and care of his remaining kidney until such time as action is needed.

Of course, there's the other side of the coin, the side that is scary: possibility of another relapse. I'm not thinking about that, as much as possible. Right now, I'm going to enjoy an unexpected weekend at home and the good news that extended hospital visits are winding down.