Board Games

Fellow "cancer moms" often refer to this new world I live in as Cancerland.  You know, just like Candyland...except it's not fun and it's not a game and it can't be boxed up and put on a shelf for a few years.  (And you really don't want to lose.)  Yeah, so it's nothing like Candyland...save for the copious amounts of sugar and junk food they give kids with cancer (because at the conclusion of treatment, every kid wants to go get a root canal or two. Right?).

To me, Cancerland is scary and traumatic, but to Ari, Cancerland is just where he lives.  It's all he knows.  It's his life.  He doesn't comprehend that he's different from other kids and he sure as heck does not realize that he has a serious medical condition.  He must think all kids Purel twenty times a day, and have their temperature taken every morning and evening, and have nurses come visit them at home to draw their blood.  And I'm pretty sure he thinks he is Caillou.

Sometimes I wish I could explain it all to him.  But most of the time, I'm glad he lives in happy oblivion. 

But as Ari becomes older and reflects on his daily experiences both in conversation with me and in imaginary play, I realize just how all this cancer stuff has taken over his life.  The majority of the time he's playing, he pretends he's taking his animals on trips to the clinic or speeding his excavator truck to go dig dirt at the hospital.  He loves to use his toy syringe to give us all our "tubey" and he has mastered the blood pressure cuff.  When he gags, he says, "quick, get the bucket" and he even asks for "ativan" when he's not feeling so hot. 

I imagine that you who are reading this feel sad for Ari, but I gotta admit, watching him "play cancer" puts me more at ease.  Why?  Because I am convinced that not much about Cancerland is scary or traumatic for him and I will even go so far as to say that a lot of this cancer stuff is enjoyable.  (This is why the Make a Wish Foundation often says the wishes ganted are just as much for the families as they are for the kids.  The parents sometimes need the fun more than the patients.  Therefore, Ari's going to wish to go to the Seychelles. Wink.)

But if you want to feel bad for us, here's a story that made my heart ache.

One morning, Ari was pretending the remote control was a telephone and he accidentally turned on the TV.  Airing was an hour-long St. Jude's fundraising special featuring many kids with cancer.  Ari sat fixated on the kids on the screen.  And then he started excitedly narrating for me.  He pointed out doctors and nurses and medical equipment and all of the things he sees on a regular basis.  I let him watch because I realized this was very exciting for him.  It was like watching a show all about Ari.  But then, towards the end, they showed a bald boy around Ari's age playing with trains.  Ari looked at me and said, "Mommy, Ari play trains too?" and I responded, "sure, let's go play trains" and he pointed and said, "Go to hospital and play trains with boy?"... 

(Deep breath JulieSue.  No tears.)

..."Sure, let's go next week after Clinic."

Satisfied, Ari jumped off the sofa to go play with his trucks.

It took me a few minutes to recover.  And then, after a moment of reflection, I smiled.  To my 2 1/2 year-old, this is all just fun and games. 

I'm thankful for this.  And one day I will explain to him that he won in the real version of the game of Life.

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Quick medical update & a refresher of our routine:

Every 3 weeks, Ari receives a whole slew of chemo and 7 days of a crazy high dose of steroids (steroids keep leukemia cells from growing).  It plays out like this - 1 horrible/neurotic/hungry/insomnia filled steroid week, 1 week to recover from the effects of the steroids, and then 1 really feel good week.  And then it repeats.   Ari has 3 more courses like this and then the steroid dosage drops significantly, and his "whole slew" of chemo changes as well.  The docs claim that this new regimen makes the kids feel much better.  And, knock on wood, he will remain on this new protocol for 1 year, and then treatment will conclude.

This Wednesday begins the next cycle.  I'm stocking rice and edamame and hot dogs and pasta, but only time will tell what he wants to eat.  Do I think he'll want matzah and hard boiled eggs?  Doubtful.

Hopefully we have enough ativan for all of us to get through the week.

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AAA

For those of you who have been reading this blog since the beginning (all 5 of you), you know that I started writing to document the silly and the stinky things Ari did as a baby.  By the time Ari was 6 months old, I had written 43 posts covering topics such as baby drool, baby fat, and oh yeah, baby poop. 

Part of me feels that sweet baby Alison will be spared the humiliation of googling herself and stumbling across her mom's embarrassing blog.  The other part of me feels it's only fair to write about my beautiful girl, because, let's be honest, we wouldn't want her to resent her brother for getting all the attention.

So, without further adieu, this post is ...

All About Alison.

Little Alison may, in fact, be the easiest baby ever.  (Let's hope that trait lasts through middle school...but not through high school... if you know what I mean.)  She's a good eater, a good sleeper, and a very happy child.  She doesn't have earwax or eye boogies or unusually smelly diapers. 

But here's what she does have:

1. A 3rd nipple

2. A few (thousand) rolls:

3. And (I know I shouldn't go there... but, I can't help myself...) Cameltoe:

But perhaps most importantly, she has an older brother who is absolutely in love with her.

Here's to you sweet little girl.  Love you.

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Donate your "Play"-telets

From October 2010 - June 2011 BC (before cancer), Ari had a class or activity every day of the week.  There was gym class, music class, Aquarium class, playgroup, and more.  I relied on these activities for his fun and learning and socialization.  Plus, we had memberships to every museum in the city and we visited them quite often.

Since June, Ari hasn't been able to go to any of these classes or crowded germy spaces.  But this past Friday, the stars aligned... Ari was feeling good and had high counts and so we made a guest appearance at his old music class.  And he had a blast!

It was wonderful to see him singing and dancing and banging on the drums.  But every time I heard a kid cough or a mom sniffle, I wanted to run out of the room as fast as possible.  It was the motivation I needed to (finally) start a playgroup for kids with cancer or compromised immune systems.

That's right, we'll be putting the "play" in platelet this Spring 2013.

And I need your help.  Would you be willing to donate your time, energy, skills, and fun for an hour?  Or, do you know someone who would want to volunteer?

I'm looking for volunteers who would be willing to lead a 45 minute (or longer) activity with a small group of kids (ages 1-5). You can sign up once or you can sign up on an ongoing basis. I will offer 2 days a week for playgroup (Mondays and Fridays) but will only hold it if there is a volunteer to lead an activity and if enough kids sign-up. Kids will be able to sign up the week before (they will not need to sign up for the "class" so there will be an ever-changing roster of participants based on how kids are feeling and where they are in treatment.)

Volunteers can lead activities like arts and crafts, music, singing, drumming, story time, yoga, gym, puppet shows, clowns, dancing, cooking/baking, etc etc.  An organized activity would be a great distraction for these kids and their families. OR, if you have a clean environment or outdoor location that the group could visit, that would work as well. (Field trip!)

In the beginning, we will hold playgroup in my home (either in the basement which is a big open space or the backyard or the sports field nearby.)  

This is the link to sign up.  Or, feel free to cut and paste and send to your friends who may be interested in volunteering.  www.SignUpGenius.com/go/70A054AADA822A75-volunteer

Please let me know if you have any questions or suggestions.

Thanks in advance!!

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A-a-a-ari

When Ari lost his hair, I envisioned the looks of sadness and pity that strangers would give me.  I thought they'd stare at my little boy and wonder what was wrong.  I even figured a kid or two would ask him why he didn't have hair. 

And I was right.

To be honest, I can't blame people.  It is sad.

But most days, Ari feels good.  He plays and sings and laughs and acts like a healthy normal little boy.  But his hair, or lack thereof, makes it hard for me to pretend he's just like everyone else.  When he's wearing a hat, nobody pays attention to us.  When the hat comes off, it's, well, a pity party.  I try to ignore them, but it seems that time doesn't make it any easier when I see the sad eyes and sorry looks.  I know it's silly and I know I should focus on the fact that he's bravely fighting cancer and that his baldness is a source of pride for us that he's out of the hospital and in remission.  But whatever.  I want his hair to grow back.

The docs said it wouldn't happen for at least 6 more months.  So I don't want to jinx it, but, Ari looks like day 3 of a watered chia pet.  He has sprouted!  All over his smooth round head are tiny little blond hairs.  So light, they are barely visible, but up close or in the sunlight it's clear his hair is growing out of every little follicle on his scalp.  I'm giddy.  (Look closely...)

For all I know, it will fall out again next week.  Or, maybe, it will continue to grow, and one day soon his head will look a little like my legs these days.  But blonder. (Sorry Matt.)

Either way, this new growth, which the oncologists said wasn't yet possible, is exactly what the doctor ordered.  I needed a reminder that things would one day go back to normal. 

And the tiny fuzzy hairs did it for me.  Let's hope this is perm-anent.
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We are at the tail end of a steroid course and the last few weeks have been pretty tough.  He's been slow to recover from the chemo which has increased the number of clinic visits and visiting nurse appointments.  Luckily, when he spiked a fever last week and ended up in the ER, his counts were high enough not to be admitted, but it was another reminder of how not-so-easy this process can be.  Ari is about 35% of the way through his two years of treatment.  It's been the longest 8 months of my life.  Yet, I can't believe it's already been 8 months!  We still have another 16 months (with or without hair) and then, fingers crossed, Ari will be chemo-free for the rest of his very long life.

His foods of choice this steroid week?  String cheese and thin white crackers (the expensive kind from the gourmet cheese display.  Saltines wouldn't do.)  He has his final dose of 'roids tonight and he is about to finish pack #4 of Frigo cheese sticks.  (Thank goodness he's not lactose intolerant like some other members of his immediate family.)

I'm going to try to blog more often.  I feel guilty that I don't write about sweet little Alison (the easiest baby in the world!) or about Ari's hilarious antics.  But since both kids are napping, I think I may try to close my eyes for a few minutes.  Ok, you're right.  I'm going to watch Top Chef.  Or Kim and Kourtney...

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The Perfect Storm

Here's the latest news report.

All week a storm has been brewing.

Labs and check-up at clinic Monday. (Ari)
Chemo Tuesday. (Ari)
High fever/ER trip Tuesday night. (Ari)
Steroid course Wednesday. (Ari)
Labs and check-up at clinic Thursday. (Ari)
Pediatrician appointment with 3 shots Thursday. (Alison)
Fever and projectile vomiting from reaction to shots Thursday night. (Alison)
Steroids continue. (Ari)
Lumbar puncture under anesthesia with intrathecal chemo scheduled for 9am Friday. (Ari)
Steroids continue for 6 more days. (Ari.)
24 inches of snow. (Nemo.) 

I'm pretty sure the forecast is accurate.  This is going to be a nightmare.

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L-ANC-e

I could care less about cycling.  I never watched a race.  I never knew what was involved in competitive bike riding.  And, truth be told, until those yellow Livestrong bracelets made their debut, I didn't know anything about Lance Armstrong. 

But, like the rest of America, I tuned in to OWN to watch the two-part interview with the most despicable man in the world 7 time ex-champion.  And by listening to Lance, I learned a lot about lying and cheating and bullying.  Oh yeah, and a ton about doping. 

Little did I know that my 27 month old cancer patient could kick Lance's a$$ any day.  In fact, tomorrow, if counts are high, Ari continues his two year long...

Tour de FrANCe! 

That's right.  And he has his own legal winning cocktail.  Blood transfusions - check.  EPO-like cell producing meds - check.  Steroids - check.  Just as Lance articulately described, it is vital for Ari to take all these drugs in order to beat those pesky foreigners invading his turf.  Winning is his only option.

And Ari's doping regimen, as I often describe, makes him, well, how do I say this nicely... mean, angry, unhappy, cranky, uncomfortable, and an all around asshole.  Luckily it only lasts 7 days at a time. 

But it begs the question...

Is Lance Armstrong still doping?

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the size of a small chicken. or preemie.

There are some things I simply can't prevent.  They must be genetic.

Like, for example, Ari's appreciation of bathroom humor.  Or his ability to collect a whole lot of crap.  And now, his potty mouth.

Uh, hmm, yeah.  Really, I'm not proud of this.

In other news, Ari gained 4 pounds in exactly 1 week.

His steroid induced appetite this week consisted of edamame and white spiral pasta which he carefully removed from the Trader Joes Mediterranean Pasta Salad.  (The chick peas, tomatoes, cucumbers, and parsley remained untouched.)  In total (but still counting), he ate 11 bags of edamame and 13 packages of pasta.  He supplemented his soy and carb diet with 3 1/2 gallons of whole milk, 4 avocado sushi rolls, and 12 cups of popcorn.

Mighty impressive don't you think?

The good news is Ari gained a lot of weight!

The bad news is... so did I!

Fuck.

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Wicked smaht

I really hate to brag.

But I need to publicly announce a very important fact.  You see, I've secretly thought this for quite some time.  And this afternoon, it was proven to be true.  Ok.  Ready?

My child is a genius!

I kid you not.  He is exactly 2.15 years old and he can identify all 26 letters.  He even understands the difference between lowercase and uppercase letters.  He can spell his name.  He can sound out words.  He can differentiate between letters and numbers.  And he has a freakishly remarkable memory. 

But today I was truly blown away.

Because he potty trained himself.

Now, I gotta tell you that for 32 years I've heard tales of another genius toddler (uh huh...yours truly) who supposedly potty trained herself.  "No buy more diapers" she told her mother at the grocery store.  "How will you tinkle?" the mother asked.  "Tinkle in the toilet" she replied.  And from that day forth, she never wore a diaper and never had an accident.

I used to think this was bullsh*t exaggeration.  (Even if it was about me.)  But today, after returning home from receiving a boatload of chemo, Ari looked at me and said, "Ari poopie in potty."  Surprised, since there's been not one ounce of potty training under this roof, I asked Ari for clarification.  "Do you want to make a poopie in your diaper?" and he emphatically responded, "No, Ari poopie in the potty."  So, I quickly pulled off the Pampers, plopped him on the toilet, and waited for a false alarm.

And then, just like that, he pooped.  Twice.

He wiped, washed his hands, and we (both) celebrated with chocolate chips.  Then, approximately 10 seconds before I put on a clean diaper, he peed on the floor. 

So maybe he's not fully potty trained.  But still, way to go Ari.  You continue to surprise me and impress me and make me so incredibly proud.

You wicked pissah!

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8 crazy nights

I'm not sure where I went wrong.

Every night of Chanukah, as we would light the menorah and sing the blessings, Ari would freak the eff out.  "No Chanukah. No candles. No singing.  Please Mom and Dad noooo Chanukah!"  Then, on most nights, he would cry.

In an attempt to get him to enjoy the festival of lights, we tried to reason with him.  "Ari, you'll get a present if you light the candles" to which he would respond, "No presents."  (I will admit that this was convenient as we didn't have any for him after night 3.)

So beginning on night 5, Matt and I gave up trying to get the kid in the Chanukah spirit.  We would plop the little guy on the sofa, turn on The Wiggles, and light the candles as discretely as possible.  We even whispered the blessings as not to send Ari into a terrible two tantrum.

Oh well, I thought, maybe he'll be into the holiday next year.

But then today, the morning after night 8, Ari woke up singing a very lively rendition of a holiday classic.  He was SO into it!  Dancing and clapping and grinning from ear-to-ear.  He definitely was feeling some holiday cheer.

At the top of his lungs he sang, "Jingle bells!  Jingle bells!  Jingle bells!".

Did I take the wrong kid home from the hospital?
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What a couple of weeks we've had.  One week in the hospital.  One week of terrible diarrhea.  And now we have just begun one week of steroids.  Today is officially day 2, so, in keeping with the theme of this blog, the sh*t has yet to hit the fan.  But Ari is already hungry and his sleep patterns are out of whack. (He ate a bowl of pasta at 2am. And milk at 4am. And took a 3 hour nap this morning.)  Things should get really fun by Tuesday/Wednesday.  And by fun, I mean, really awful.  (Anyone wanna come over and help?)

In other cancer news, there's a family we grew to love when we were first living in the hospital.  They are from the Dominican Republic and have no friends and no family in Boston.  The patient is about 16 and her mom and younger sister are here to help.  I spoke with the mom last week who told me things are not looking so good for her precious daughter.  My heart aches for them and I desperately want to do something to help.  I would invite them for Christmas dinner, but I don't think they have any mode of transportation, and I would feel bad serving them Chinese food.

So, I'm just going to ask all of you, who have been so wonderful to us, to keep this family in your thoughts and prayers.  So often throughout the last 6 months have I realized how lucky we are and how special and important and vital our friends and community have been. 

We have so very much to celebrate this holiday season.  I'm hoping for a Chanukah miracle for this family.  I think even Ari would be happy to celebrate.

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Jealous

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It's good to be home.

But I have to admit, this time around, there was something oddly comfortable about the hospital.  I was friendly with all of the nurses, I brewed a perfect cup of french vanilla coffee on the Keurig every morning, and I even remembered the best foods to order from room service. 

But most of all, I wasn't scared.  Ari wasn't receiving chemotherapy and he wasn't being monitored 24-7.  Every morning when I studied his daily blood count print-out, I looked for the number of white blood cells, not the number of leukemia blast cells.  (Because, he doesn't have any leukemia cells!)

Now, don't get me wrong, being back on the 6th floor of Children's Hospital is more than a tad depressing.  The floor, like usual, was packed.  We had a roommate who had just been diagnosed and I didn't recognize any of the other kids on the floor.  It seems that kids just keep getting cancer.  And being back reminded me that Ari is still very susceptible to infection, which is why they take a fever so seriously.

But Ari thought being in the hospital was all fun and games.  Literally.  He was happy to play in the toy room, participate in activities, entertain guests, and ride the elevator to see the tiny babies (one floor up was the NICU). 

Plus, he visited with his old friend Wally,

 

ate popcorn with Uncle Jeff at the "movies",

and played with his ukulele while spending quality time with Mommy (I look good for not having slept in 6 months, huh?) :

He even went to church on Sunday morning.

It wasn't until they told us we could leave that he started feeling crummy.  And since we've been home, something just isn't right.  His tummy is upset and he's in a not-so-great mood.  Did he catch a bug in the hospital?

Or is he just sick of this?

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Life

When I worked at CJP, I tried for years to secure Sarah Silverman for an event.  I sent her letters and emails.  I called her relatives.  I harassed her agent.  And it never worked.  I couldn't get her to commit to speaking at a fundraising party.  Nope.  She was too busy and too famous (and, let's be honest, we had no budget to pay her) to schlep to Boston. 

But this morning (at 2:45am), I got a pretty ridiculous email with this attached:

So I'll admit it.  I was so excited I couldn't fall back asleep.  (You may remember that I love famous people and Sarah Silverman, is, like, come on, the coolest female comedian out there.  I'd be thrilled if I were even a smidgen as inappropriate as she is.)

As fun as this video message was, I wish it was going to someone else.

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It's now day 4 as an in-patient.  Ari's fever is finally gone but his blood counts are still low.  Though the doctors are fairly certain the fever was not from a bacterial infection, he still must receive IV antibiotics around the clock until his ANC rises.  This ensures that his body will be able to fight off any little bug once he is discharged. 

Meanwhile, Ari is having a blast in his old stomping ground.  He is chasing down the robot, playing with the toys, reading tons of books, doing art projects, and socializing with other kids.  (And eating ice cream and oreos for breakfast, lunch and dinner.)  To him, this place is like summer camp.  I really hope the session ends soon!

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Day 1 again

Because things were just starting to feel normal...(that may be a stretch, manageable is more appropriate a term), and because Alison gets so much attention (that is definitely a stretch), Ari decided to go on a little vacation. He didn't choose a warm and sunny destination like Florida or Vegas. He opted for a little retreat at the kids only motel in Boston.

You guessed it. We are back on 6 north.

Ari got the seasons a bit mixed up. Instead of spring fever, he got fall fever. Literally. And with 102 deg body temp in combination with low blood counts, he's checked in to the 6th floor for at least a few days (could be a week. Or 2. ) until his counts rise.

Being back blows. 

Think good ANC thoughts!!

(blogging from the iPhone, excuse all typos)

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5 days of steroids...

On the first day of steroids my Ari said to me,
"1 avocado sushi."

On the second day of steroids my Ari demanded of me,
"Two bowls of white rice and 1 avocado sushi."

On the third day of steroids my Ari shouted at me,
"Three plates of pasta, two bowls of white rice, and 1 avocado sushi."

On the fourth day of steroids my Ari violently screamed at me,
"Four scoops of PF Changs black bean chicken, three plates of pasta, two bowls of white rice, and 1 avocado sushi."

And on the fifth and final (hallelujah) day of steroids my no-longer-sweet Ari cried and screamed and yelled at and harassed me,
"Five salty pickles, four scoops of black bean chicken, three plates of pasta, two bowls of white rice, and 1 avocado sushi. (And chips.  Hummus.  Rice.  French fries.  Daddy's cheese.  More avocado sushi.  Now!  Mommmmmmmy!!  And milk!  Move Mommy.  No sit here.  Fill up water cup.  Go. Hungry.  Fooood!!!"
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No joke.  Ari has consumed at least 15 avocado sushi rolls and 5 pounds of white rice over the last 5 days.  He eats 30 times a day and 3 times throughout the night.  And in between eating, he is a mean, cranky, agitated, tired, indecisive mess. 

Steroids suck.

Only 1 1/2 more years of them.

Yup.  Our new outpatient routine (which we naively believed would be a piece of cake) consists of  a boatload of chemo and 5 days of steroids every 3-4 weeks.  The chemo is no problemo.  The steroids?  Torture.  But, if it keeps the cancer cells from returning, it's worth it.  (But holy cow, it doesn't make these 5 days any easier.)

The good thing about these 5 days of misery?  Ari is undoubtedly gaining weight.  I'm excited for his weekly weigh-in and hope he continues to eat (just not this much) after today.  I miss his cheeks (both sets).

Speaking of cheeks, look at this little girl...

Sorry I haven't written in so long; I simply have no time! 

Oh, gotta go... I'm being summonded. "Rice, rice, rice, rice, rice, rice, mommmy riiiiiiice."

I'm losing my mind.

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TWO!

I love everything about birthdays.  I love the cake, the presents, the cards, and the party.  And most of all, I love to celebrate those I love.

 

But this birthday is different.  There is no party with a bunch of friends.  No farm animals or magic show or kiddie train.  No goody bags.  And no Party Favors cake. 

 

And yet, this birthday is more special than any I have ever celebrated.  It's Ari's 2nd birthday - the anniversary of the day he was born.  And he is more alive than ever!  

 

He is funnier, sillier, and more energetic than he was 5 months ago.  He knows all of the colors.  He counts to 10.  He names every single kind of truck.  He sings songs.  He plays hide and seek.  He points out makes and models of cars.  He picks out his own clothing.  He peels oranges.  He tickles toes.  He kisses his sister.  He hugs his mommy.  He sings shema with his daddy.  He runs and jumps and dances and plays.  He lives life to its fullest. 

 

He is healthy.  He is happy.  And he is 2.

 

I will make a wish and blow out his candles.  I won't tell you what it is, but it's the same wish I have made every day since June 4th.  And so far, it has come true.

 

Happy Birthday Ari.  May this day be as special as you are.  And may you celebrate a hundred more birthdays.

 

I love you.

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Firsts

Alison is an over-achiever.  At 5 weeks old...

She's smiling:

She's sleeping:

 

 

And she's sh*tting:

 

Way to go baby girl!  Congrats on your first blow out.

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This has been the toughest two weeks of the last 4 1/2 months.  My little Ari has been pretty miserable (and hungry and tired and cranky and constipated).  We even ended up at the ER on one of his weekend days off.  But, I'm happy to report that the funny, spunky, wild, and crazy almost 2 year old I know came back today.  He was playing and running and laughing and even thinking of stalling techniques before his nap (unlike the last few days when all he wanted to do was sleep!).

2 more days to go and then he's off for a bit before the "normal" routine of the next year begins.

I try not to document the days I'd rather forget, but this was too cute to ignore.  Here's Ari, while on steroids, with an insatiable appetite, fast asleep... he's sleep walking eating.

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Insider Trading

I'm going to let you in on a little secret.  Now is the time to buy stock in Hebrew National.  There is currently high demand for the high sodium meaty goodness of the all beef hot dogs.  With Ari on steroids, eating like a sumo wrestler with a major craving for franks, I anticipate the hot dog market (okay, maybe just my local market) to see some major action this week. 

You think I'm joking?  The 29-pounder ate 7 hot dogs yesterday...the full fat ones!  So we bought as many packages as our refrigerator can hold.  And we've already had to restock!

I don't think it's right to make fun of my son, especially this week (see below), but there's just one more thing I have to tell you about his hot dog addiction.  He calls them...ready for this...hot cocks.  I'm stumped because he can easily and clearly pronounce "hot" and "dog" but when he puts the two words together, and requests his new favorite food, he makes heads turn.  He shouted this repeatedly at the apple orchard, at the hospital, and yesterday on a walk in the neighborhood. 

Wait a sec, he's is going through radiation this week.  It makes his cheeks red and head warm.  Maybe he's not hungry?  He could just be telling us how he feels...
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Q: What do you call a hot dog with nothing inside it?
A: A hollow weenie!
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Ari update:

The good news - Ari is still in remission.  Results from this week's lumbar puncture and bone marrow biopsy showed no cancer cells in his blood, his spinal fluid, or his bone marrow.  He continues to be disease free.  This is, of course, the best and most important thing I can share.  The doctors said they will not do another bone marrow biopsy again!

The icky news - Because leukemia cells are sticky little suckers who like to hide in the brain and spinal fluid, he is currently going through a not-so-pleasant phase of treatment.  Without going into too many details, this phase combines daily radiation, twice-weekly lumbar punctures with intrathecal chemo, steroids, and 3 other kinds of chemo.  Holy chemo cow.  He is a cranky, nauseous, tired mess.  And I don't blame him.  We are one week down with one week to go, and then, we finally enter the phase of treatment which will take us through 2013 with waaay fewer trips to the clinic and much less medication running through his little body. 

Since he has the weekend off, we will attempt to have some fun.  But we'll bring hot dogs and ativan and a puke bag everywhere we go.

TGIF!

Some recent pics...

 

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