Mission Possible

Let me set the scene.

We are on the Bone Marrow Transplant hall.  The air is filtered.  Visitors must wash hands before entering the first and second set of doors.  And nobody with even a sniffle is allowed onto the floor without head-to-toe plastic ware covering their body.  The kids in every other room have brand new immune systems and cannot be exposed to germs.  This is serious business.

Meet my son.  He is 2 1/2 years old, full of energy, always on-the-go, and has never been told hates being told "no".  And he has a viral infection.  He wants to run and play, but right now, he is only allowed to do so in his room or outside.  And, stubborn little fella refuses to wear a mask to walk the 50 feet to the elevator. 

After one failed attempt to force him to wear a mask (which ended with Ari kicking and screaming..and coughing...in the hall after tearing off the mask), we came up with a solution.  I would bring a full body mask, aka the rain cover on his stroller, to him. 

Hey there bubble boy:

Success!

Once we got him off the floor, we were allowed to go outside, roam the hospital garden, and play at the hospital playground.  But as Matt convincingly assured me, "rules are meant to be broken," so we took a leisurely stroll around the hospital property.  Err okay.  And maybe we took a gander off the property too...just a little.  No really...it was only 2 or 3 miles...max. 

And Ari, for the first time in days, was thrilled.

He saw lots of trucks,

 

Fed some ducks ("1 goldfish for Ari, 1 for duckie"),

Ate,

 

and drank.

 

 (oh c'mon, a grande frappuccino can't hurt him. Plus, it's Matt's night to sleep over. Heh heh.)

And (not pictured), he did spend a long time at the playground.

Seeing him so lively made me really happy.  I just hope he didn't have so much fun that he wants to stay another day (or two or three)!

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Come on ANC!  We need a 40 point bump tonight and then we can go home!!  Ari's white blood cells went up, his platelets went up, his monocytes went up.  And his ANC went down.  Dance, pray, sing, do whatever you need to do to get his ANC up. 

Thanks for all of the continued support and love!

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Married White Female

When Ari was admitted to the hospital last week, I was more than a bit bummed out.  I would be missing the biggest CJP event of the year, we would be unable to take our planned ski trip with other Jimmy Fund Clinic families this coming weekend, and I would have to cancel my first date with Jane.

Jane had asked me out over email.  Her cutie-pie daughter Clio is also in treatment for Leukemia, and Jane is a writer/blogger (like a real one...she's written books and stuff...and now you're all going to start following her blog which is fine as long as you don't compare mine to hers.  Remember, she's a professional.).  We had chatted briefly a few times in person and traded emails, but never actually hung out.

So when Jane asked if I would be interested in meeting for a drink or two, it sounded great.  The camaraderie I feel with fellow cancer moms is indescribable.  I figured we would drink, chat, laugh, and, most importantly, sob inconsolably commiserate with one another. 

Jane first offered to come to me.  Woah.  What kind of girl did she think I was?  I don't invite people over on the first date.  So we chose a central meeting spot and booked it on the calendar.  It was planned for Tuesday, April 9th.  Tonight.

I emailed Jane a few days ago to let her know I would have to reschedule as we were stuck in the hospital.  She was so disappointed that, ready for this, she found some germs and fed them to her daughter.  Can you believe it?!  And then last night, she checked her daughter in to the hospital!  Uh huh.  She even gave her a cough and a high fever to boot! 

I'm trying not to get too freaked out about this.  I should be flattered, not scared, right?  I think I'll give her the benefit of the doubt, believe her tale that "every one in her family is sick", and share my opened bottle of "apple juice" in the fridge. 

But I'll probably alert hospital security...just in case.  

(Feel better Clio.)

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As anticipated, Ari is not a happy camper being stuck in his small hospital cell room.  Yesterday, he had both a major freak out and an attempted break out.  Good times.

I brought his stroller and plastic rain cover with me today in the hopes we could make him mini bubble boy and take him outside without infecting all the other kiddos.

And I'm trying not to get my hopes up because... Ari's ANC tripled overnight!  It went from 50 to 170.  Only 30 more little neutrophil points before we can check out and go back home.  The doctors think the counts will probably dip down before they go back up but I'm feeling hopeful. 

Hugs and kisses everyone. (ANC dance por favor)

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In a pickle

 

When Ari's counts drop, so does his appetite. We see this at home every 3 week cycle. Week 1 he eats a tremendous amount of 1 specific food. Week 2 he eats like "normal" (veggies, fruit, pasta, protein, etc). And week 3 he stops eating. We used to be concerned but now we know the drill. He gains weight. He loses weight. Repeat.

With his counts at around zero (technically, his ANC is a whopping 50), he's not so interested in grub (and particularly what they offer through hospital room service).  The last two days, he not-so-calmly requested avocado sushi, edamame, and hot rice, and then only picked at and played with it once it arrived (thx J.J.).  But last night around 7pm, he announced "Ari's hungry" and then, surprisingly, sampled a wide variety of foods: Chicken finger, crackers, apple slices, chocolate ice cream, and a pickle sandwich.

Yup. He even made it himself.

Dinner of (neutropenic) champions.
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Ari has now been fever free for 36 hours!  YAY.  His cough is significantly better and he has no other viral symptoms.  But, we still must wait for counts to rise.  And most frustrating, we still can only be in the room or outside.

And to get from inside to outside, Ari must wear a mask...which he refuses to do (we tried yesterday and it didn't end well).   I feel so bad for the little guy.  He knows where he is and he knows there are play spaces and toy rooms and movie rooms and robots and halls and little babies and all sorts of other fun stuff to explore right outside his door.  But he can't go out there.  And he doesn't understand why he's stuck inside.  We're trying to distract him (as are guest puppet shows and new toys) but I'm dreading the next couple of days. 

And I'm taking suggestions for activities/distractions...and hoping for a count-rising miracle!

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Saturday Night Fever

I had planned to write a silly little story last night about the hospital engineer "fixing" a problem in our room:

But that became insignificant after what followed which I will call...

The Scariest Moment of my Life.

Here's how it played out.  Our head doc is on call this weekend so we feel very safe.  When he recommended an infusion of antibodies (immune globulin iv), we thought it sounded like a good idea.  Ari needs any virus-fighting help he can get right now. (If you want to read about the antibodies and how they do it, check out this site.  And a more complete Ari medical update is below.)

They briefed us on possible side effects and reactions from the transfusion, gave him some benadryl and tylenol to "pre medicate" him, and plugged it into his line.  It was going to be a 2 hour drip.  He watched 3 episodes of Caillou, I read an US Weekly, Matt went to get dinner, and then, an hour into the infusion, Ari made a funny coughing sound like he had a frog stuck in his throat.  Matt and I both jumped up.

And then within seconds, Ari was shaking uncontrollably.  I don't know how long it took for a swarm of staff to rush in, but it felt like forever.  Ari was vomiting and rigor-ing, his heart rate was through the roof, his entire body was covered in hives, and when they took his temperature, it was over 105.  They gave him a shot of benadryl in his IV line which made him very promptly... pass out.  

At this point, I remember shouting "something is wrong!" and the doctor in the room calmly assured us that "this was a normal reaction and within minutes he would be fine."  Again I shouted, "something is wrong!  do something!" and they were able to get Ari to respond (open his eyes, squeeze our hands, etc).  I am not sure how long he spent in this frightening eyes-rolling-back position, but it was long enough for me to, ahem, think the worst.

And then, suddenly, he sat up, looked at me, opened his little pink lips and said, "where's my front loader? get my truck."  Just like that, he was back.  In fact, he proceeded to have a bit of a manic episode (they think from the benadryl.)  It was like watching a toddler with ADD on speed.  He wanted toys and rocks and playdough and he was singing songs and drinking juice and tickling himself and poking the nurses.  I think he even had a laughing fit.  Then he asked Matt, "Daddy are you going to the office?" which prompted one of the nurses to ask if Matt works nights.  We all had a quick chuckle and shared a big sigh of relief.

(I'm pretty sure this is when I wiped away tears, allowed my heart to beat so fast the floor shook, and then chugged a bottle of gatorade to keep myself from fainting.)

When all was said and done, his fever was back to a more comfortable 102, he was given IV steroids to try to stop the reaction to the antibodies, and as a reward for the intense drama, we were moved to a new room (good thing because the Engineer didn't fix the issue).  We settled in, Ari dozed, and Matt and I enjoyed a much-needed adult beverage (thx C&B. And shh people, don't tell the staff).

Incredibly, his fever broke overnight and he was able to sleep comfortably.  In fact, he's still dozing now.

I'm going to take a quick shower since I can now smell myself.  (TMI?  Never...)

Hoping for an uneventful Sunday!

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OK more medical stuff, for those who are curious.

A little background as to why we are here... The protocol for kids with cancer is that anytime a child has a fever (above 100.4) they have to get blood cultures taken in the rare case that they have a bacterial infection.  If the kid has normal blood counts, they get a dose of IV antibiotics and are sent home, but if their counts are low, they're required to stay in the hospital until counts recover.  This is so they can be monitored around the clock, receive high-dose antibiotics to prevent bad stuff from growing in the body, and because there's a chance a fever signifies a bacterial (central line) infection  it could be a very bad scene if they send a kid home.

On counts - Chemotherapy makes counts (white blood cells, neutrophils, platelets, etc) drop.  On purpose.  It usually happens about 10 days after receiving chemo.  In Ari's case, he usually drops around day 10 and then his body takes 2 full weeks (sometimes longer) to recover and for his counts to go back up.  He had chemo on Wednesday March 27 (11 days ago).  The other two things that make counts fall - fevers and viral infections.  So Ari has the perfect trifecta of count dropping mechanisms.  This isn't exactly worrisome, it's really just bothersome.

What does this all mean?  Well, in short, that our stay here will not be short.  My guess is we'll be here for around 2 weeks waiting for Ari's body to produce cells so he can fight off his little infection.  (This was a heck of a lot easier before kid #2.  And before we moved to the 'burbs.)

We are now in a room on the bone marrow transplant hall because the regular Onc hall is full.  Ari is going to be on "precautions" for most of this stay because they don't want to risk him giving his viral bug to another child.  I don't blame them.  But, it's going to be pretty difficult to keep Ari happy and occupied once he feels better.  No toy room, no movie nights, no nothin'.  Hopefully we can take him outside and keep him busy looking at ambulances and watching construction.

We can have visitors (but very brief visits and no kids and only if people are 100% healthy and haven't been exposed to anyone unhealthy).  We are ok right now, have clean clothes and lots of snacks, and just hope Ari's fever stays down, his cough clears up, he feels better, and he grows some good white blood cells soon.

(We are in the market for a nanny type person to help out with the baby and maybe stay overnight for these 2 weeks.)

I'll continue to update the blog but hopefully only boring daily updates from now on!

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Wishes

I got some good stuff for my bday.

Cards, cake, gift cards, and...a trip away from home with Ari!

We're shacking up for at least a few days (probably more) at the all suite resort I've grown to (not) love - Children's Hospital.

We're back.

They call it "fever with neutropenia" or in other words "my toddler has a little cold and gets locked in jail for a while."

What do we need? The ANC dance. And distractions! They won't let Ari into the toy room or fun common areas for fear he may infect the other kids.  And because there are no empty rooms, we're in a non room room. So we need a window too.  In all seriousness, we just need you to pray that Ari gets better and gets his counts up. That's my birthday wish too.

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Be careful what you wish for

Cancer is expensive.

I'm not complaining, just explaining.  Between the parking garage at the clinic, the apple flavored compounded prescriptions (they have to make them taste good or else little A won't take them), and the fancy food cravings one week a month, a family can really feel the pinch. 

I was wishing and hoping that Ari would choose a food that was cheap and easy and filling for this steroid course.  And, you won't believe it, but he obeyed.  I'm happy to report, that since Thursday, Ari has gone through...ready for this...36 cans of (cold) spaghettios.  And 2 gallons of milk.

He ate them all day and all night.  He ate them in his crib and in my bed.  He ate them on the floor in the toy room and on the chair in the family room.  There's simply no negotiating with terrorists a starving 2 1/2 year old on high-dose steroids.

In total, the 36 cans cost about $40 dollars (they were on sale 10 for $10 at the Star Market).  That's like $6.50 a day.  Bargain!

But, our white sheets, Ari's light blue rug, and our entire family room is neon orange.  I think a few days of sushi would have been cheaper than next week's Stanley Steemer bill. 

Next steroid week, I'm hoping for white foods again.  Spaghetti-no.
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Tomorrow is a very exciting day.  It's time to celebrate!  We can have cake and ice cream and open presents and have a big par-tay.  Anyone know what it is?  It's some one's BIG day!

That's right, it's Ari's final dose of Asparaginase! 

This is a huge deal because it signifies the end of one phase of treatment and the start of another.  Yahoo.  I'll be at the clinic with Matt and Ari and I am psyched to celebrate.

Wait, what did you think I was referring to?

There's really nowhere I'd rather spend my birthday...

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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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