Heat wave

My husband is having an affair.

I think is started quite innocently.  From daydreaming to internet searching to the real thing.  One thing led to another, and before I knew it, he had a new love. 

I'm almost happy for him.

He smiles more.  He has a spring in his step.  His cheeks are rosy.  And he's definitely getting more of a regular work out.

But he thinks about it all day long.  And he's even buying lots of special presents for the lucky new object of his affection.  Lust?  Hardly.  This is full blown infatuation.

He's madly in love.

After the kids go to sleep, it's no longer TV time with yours truly.  Nope.  I've been replaced.

Now, he quickly puts on protection. 
And hurries out for a date.

(there's even early morning wood ice)

How do I feel about this? 

My mood bitter.  My heart raw.  My soul icy.

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The rules

This cancer stuff is not a game, but for the purpose of this post, please just go with it. 

To attempt to win the game, players must adhere to a strict set of rules.  You must administer and take meds on time.  You must wash your hands often and stay far away from sick people.  And you must always, no-matter-what, go straight to the ER if you have a temperature over 101 degrees celsius (or 38.5 farenheit).  A temperature is the first sign of an infection.  And an infection can stick to the port implanted in Ari's chest that goes straight to his heart. 

If you break any of these rules, you may lose the game.  (Are you following what I'm saying?)

Okay, so we've been diligent rule followers.  We want to win. 

But after a week of high fevers, a bunch of trips to the ER and the clinic, and the same result each time (it's a virus...) we felt a little too comfortable at 2am Sunday night when Ari spiked another high fever.  And by comfortable, I mean very tired, warm, and cozy.  And by comfortable, I mean Ari was playful and happy.  And by comfortable, I mean, after 18 exhausting months of this seemingly never-ending game, we made a not-so-informed decision to disregard golden leukemia rule #3. 

We all (nervously) went back to sleep. 

And when we woke up in the morning, we very quickly made our way into the clinic for what we thought would be the same-old same-old fever story.

But this time, Ari didn't have a virus.

He had an infection.

I am being a bit dramatic in my story telling because it wasn't the type of infection that grows in the blood and adheres to the plastic line in his body.  It was an infection caused by the virus he had earlier in the week.

Either way, I learned my lesson.  We have 7 more months to compete and we will follow all the rules and do our best to kick cancer's tushie.  (Even if that means driving to the ER at 2am.  Or listening to Ari in the middle of last night give a two hour-long steroid induced monologue about trucks and fish and Christmas trees and swimming pools and anything and everything else on his mind.)

And I'm so relieved (understatement) that we're still in the game.

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It's getting hot in here...

On Thursday afternoon, Ari awoke from a nap with red splotchy skin and a soaking wet pillow.  And then told me his hand was a goldfish.  At first I thought he was being silly, but then I realized he actually thought his hand was a goldfish.

Something wasn't right.  I took his temperature.  It was high.  Very high.  Rush to the hospital high.

Don't freak out faithful readers, he's okay.

After two weekday trips in and out of the hopsital (misspelled on purpose) and 3 weekend phone calls with his doctor, we feel fairly reassured that a pesky virus is causing my baby boy to feel awful and that Ari's compromised immune system will indeed fight it.  In the meantime, however, my little Ari is so sick.  For 5 days, he's had a consistent temp of 104 degrees (without hallucinations), he has a cough that sounds like a gooey slug is stuck in his chest, he isn't eating or drinking, and he has become narcoleptic:

Someone (definitely one of the germy kids at school) took the batteries out of my energizer bunny. 

We're recharging him with syringes full of gatorade and hoping that when we go to clinic tomorrow, his counts haven't plummeted.  I'm no math genius, but I do know that Fever + Low Counts = one long ass incredible annoying Hospital stay.  

Get better soon Ari.  I miss you.

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Genie in a bottle

Years ago, I watched a video produced by The Onion that reported on a little boy battling Leukemia.  The "story" was that the 8 year-old kid wished for unlimited wishes, and because the Make-a-Wish Foundation cannot say no to any qualifying child, this patient was granted so many over-the-top trips and lavish toys and other expensive opportunities, that he forced the Foundation into bankruptcy.

Videos like this used to be funny. 

(Okay okay, you got me, I can still appreciate a little cancer humor.  This video does, indeed, make me chuckle.  To the person who thought of it and created it...You are creative and smart.  Oh, and you are a giant asshole...without a soul.  But I digress.)

When we found out that Ari qualified to make a wish of his own, I was confused.  Like almost everyone else, I was under the impression that wishes were reserved for kids with terminal illnesses.  The reality, however, is that any child suffering a life-threatening illness is eligible to make a wish.   

So, a few months ago, we filled out the initial paperwork and a few perky volunteers came to our home to ask Ari to tell them his wish.  Because we give him everything he wants Ari did not understand the concept of wishing, he asked for yogurt.  As you all know, Ari greatly enjoys healthy foods like green veggies and sushi.  Yogurt, however, is not, and has never been, part of his daily diet.  He won't go anywhere near a bowl of yogurt.  (This trait he must get from his dad.)

We waited, we explained, and we let him think and mature.  And then we helped him out by showing pictures of things like beaches and playgrounds and foods and famous people (kid really loves Obama...and btw, Mom would not have turned down a ticket to tonight's White House Hanukkah party), but in the end, it was the Mouse (and the big aquarium at Sea World and the fireworks and the beach and the tattoo parlors and Golden Corral) that convinced the wish granters that he would have an incredible time at Disney World.

Unoriginal?  Yes. 

But hey, we can't all be BatKid.

And like magic (kingdom), the amazing people at Make-a-Wish began working to fulfill Ari's ultimate want.  Yesterday, we received the dates and draft itinerary and today, I started to get excited!  This will be our first family-of-four vacation ever.  It gives us something really fun to look forward to after we survive the coming months of cold and colds.  And, can you believe it, will get us pretty darn close to the conclusion of these two years of treatment.  3 1/2 months until Disney.  Then 3 1/2 months until the end of chemotherapy (and steroids).

Coincidentally, tomorrow is National Believe Day.    All you (or any kid you know) has to do is mail a letter to Santa and $1 will be donated to Make-a-Wish. 

The mission of Make-a-Wish is "to grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.”  I am so appreciative of the work of this organization and am really looking forward to the planning and the packing and then the photographing (and therefore Facebook posting) of our smiles and laughter and fun.  We will swim and play and ride and fly and explore and shop and monorail and dream.

Do you think I'd do away with all this cancer stuff and give the trip up in a heartbeat?

I wish.

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Thanks, Giving, and Hanukkah

I've been thinking a lot about Thanksgivukkah.  At first, I was planning a menu to celebrate the once-in-a-lifetime event: deep fried turkey, latke stuffing, and pumpkin pie filled doughnuts.  Then, I started filling my trunk with small Hanukkah presents that the kids would enjoy after they finished their meal.  And finally, I began to search for the perfect menurkey.  The ceramic kind I tried to order online was sold out.  So I tried googling "make your own menurkey" but my search yielded no results.  Lucky for me, Ari brought an awesome one home from school:

Food? Check.  Gifts? Check.  Menurkey?  Check.
I was all set for the 4th Thursday in November!

Yet, as this merger of holidays quickly approaches, I now find myself thinking about the meaning behind both special days.  I just can't help but be overwhelmed with gratitude and with a belief in miracles.  Thanksgivukkah.  It's the story of my life.

I still wake up in the morning some days and cannot believe this is my existence.  I have a 3 year-old who has been in treatment for cancer for half his little life.  Our kitchen cabinets are no longer stocked with spices and olive oil but instead with syringes and medications.  I used to write about poop, and now, I write about hope.  A few years ago, I would get stressed over my annual review at work.  These days, it's Ari's weekly blood count print-out that gives me angina. (That's still my all time favorite word.  Some things will never change.)

This year, I give not just thanks, but I send the most profound gratitude to Ari's doctors and nurses and to our family and friends.  I've said it before, and I'll say it again (and again), it is the medicine and the research that has saved his life and keeps Ari alive, and it is your support and friendship and your giving that has sustained us and encouraged us throughout this long process.

I wish I could give back to each one of you, to the medical professionals, to the hospital, and to the Dana Farber.  I truly believe the Team Ari funds will save lives.  And I am so proud of Ari and all of you for donating Ari's 3rd birthday presents to kids currently in the hospital (I do not know who you all are because Amazon shipped directly there, but I will be posting pictures soon and a note of thanks from the hospital.)  And like last year when we helped a family from the Dominican Republic whose daughter M was extraordinarily sick, we are trying to help an Israeli family in a similar situation this year. 

We thank. And we give.

And this year, we celebrate miracles.

I have two of them.

Happy Thanksgivukkah. 

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We need Superman

Yesterday, I blogged about pee. 

Today, I write about something more serious.  And tragic.  And sad.

I did not know much about childhood cancer before Ari was diagnosed.  I have vivid memories of the hospital visit I made in the 5th grade to see my friend Jeremy as he battled leukemia.  I brought him candy and a stuffed animal and I sat by his bedside and wondered what leukemia meant.  I can still picture him bald and puffy cheeked.  And then two years later, I remember slow dancing with him at my bat mitzvah.  And then I recall watching him walk across the stage at high school graduation.  And today, according to Facebook, he has 3 college degrees, plays baseball, has a ton of friends, and lives a normal healthy life. 

I thought every kid with cancer had a happy ending like this.

But that's just not reality.

And it's not the ending for Sam.

How do I even begin to describe the way I feel about Sam?

Superman Sam.

He's been fighting for the same exact amount of time as Ari.  He lives in Chicago with his parents, his two brothers, and his sister.  I have never met him.  We have no blood relation.  And I'm not even exactly sure how to pronounce his last name.  Yet he is my son.  His mom is my sister.  His family is my family.  We fight the same battle.  And I thought we would all win.  And then celebrate together.

But Sam's leukemia is aggressive and stubborn and the cancer has re-emerged more vicious than ever.  And now, for little 8 year-old Sam, medicine and science can no longer help.  They've tried everything.  So now, they pray for a miracle.  And they make every last second fun and lively and love-filled.  This has been their mantra and continues to be so even when the heart aches and the throat tightens and the eyes weep.  Their days, their nights, and their lives are filled with friends, family, and fun.  Nothing else matters. 

I pray for Sam.  I pray for him to experience as much excitement and joy and happiness as possible during this incredibly hard time.  I pray for his parents and for his siblings and for their entire family. 

And I ask you to do the same.

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Rule #1

Remember that story I told you about my baby drinking chemo pee?

Oh that's right!  I didn't tell you about it.  I was too embarrassed and too disgusted to re-live the image of sweet Alison with her head in Ari's little potty, happily lapping up his tinkle.  Yeah.  Under normal circumstances this would be gross.  Given our unique circumstances, this was, indeed gross, and possibly dangerous.

So I did what every other cancer mom does.  I called the on-call doctor and explained my pee-dicament in a very calm tone, "Umm, hi.  This is Ari's Mom.  He's fine.  But, uh, umm, well, my baby drank some of Ari's pee."  And then after I heard nothing but a gasp, I asked if she would be okay.

Turns out, I was the first cancer mom to ask this particular question.  I should get a prize or something because it created a small panic, followed by a stir of activity and a bunch of consultations with medical professionals.  I'm doing my part to keep those docs on their toes!

Turns out, trace amounts of Ari's current chemo cocktail in his pee cannot hurt Alison.  But the doctor (and the toxicologist...and then another doctor...and a nurse) kindly suggested I be more careful and empty Ari's potty on a regular basis and not leave the bathroom door open... ever again.

But just to keep things interesting around here, I had de ja vu yesterday.

"Urine big trouble JulieSue."

 

P(ee).S. Photos are re-enactments of actual events.

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Picture Perfect

Happy things that make me cry:

1. Romantic comedies:

2. Weddings:

3. School pictures:

CHEESE!-y

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Ari is turning 3!

I freakin' love birthdays.  There's nothing better than cake, goody bags, presents, friends, and parties. And most importantly, there's nothing that compares to the annual celebration of life. 

I can't help but feel a little weepy and a lot giddy about Ari's upcoming 3rd birthday.  In three years, he has experienced a whole lot of happy, of sad, of scary, of funny, and of fun.  I've never admitted this, but multiple times over the last year and a half, I've worried that Ari wouldn't celebrate a 3rd birthday.  Every drug Ari has received and every procedure he's undergone and every time he is put to sleep under general anesthesia I sign a waiver that always notes that a possible side effect is... (I can't even type it without sobbing...) death.  But I've signed it with hope and with courage and with belief in our medical team.  And those drugs and procedures have kept him alive.

He's alive!  More than alive.  Have you seen him lately? 

He can jump on a trampoline for an hour.  He knows every Wiggles song by heart.  He tells jokes.  He gives hugs and kisses to his sister.  He tells me he loves me.  He loves to learn.  He happily goes to school.  He has a ton of friends.  He even has a girlfriend. 

He has always been special and unique.  He remains the coolest kid I could ever imagine.  He is my hero.

So on Tuesday, we will celebrate his life.  And yes, he will have to go to the clinic to receive chemo on his birthday, but rather than be sad, I will remain hopeful that this cocktail of drugs will enable him to celebrate a 4th birthday and a 5th and on and on.  The chemo is the best gift he can receive.

On Tuesday, we are also going to celebrate Ari's life by giving gifts to the kids who are currently on the Oncology floor in the hospital.  Many of our friends and family have ordered through the hospital's wish list, and others have dropped gifts off at our house.  Every day is a celebration of life.  (Feel free to party with us by ordering something small on the Amazon registry.)

Two more days...

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Good Eats

My kids will eat anything.

Ari has always loved salmon and green veggies and seaweed and chickpeas. 

Alison eats broccoli and lox and mango by the handful.  But her new food of choice is quite surprising.  It's not part of our usual grocery shopping list and it doesn't have much, if any, nutritional value.  And frankly, I'm a bit concerned by the amount she ingests daily.

(Wait, before we go any further, yes, you're on the right blog.  I'm finally writing about my other child!  And it only took a year.) 

Anyway, where did I leave off?  Oh yeah.  Alison is eating play dough.  Lots and lots of play dough.

And she doesn't discriminate.  She likes it in red and blue and green and yellow.  (Though I have noticed hot pink is her very favorite.)  And she'll eat it right out of the container or after Ari has transformed it into different shapes and designs.  No need for sugar cookies at our house.  We use our cookie cutters to make playdough snacks to feed my no-longer-a-baby.  Interestingly, she likes it both soft and moist right after a new package is opened or she greatly enjoys picking out little hard stale pieces from our carpet and chewing them until her saliva makes it once again soft enough to swallow.  TMI?  C'mon.

The best thing about this new found snack food is that it comes in bulk and it's non-toxic.  This means it won't give her cancer.

(Oh my god. Not funny.)

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In awe

Not to get too Jewish here, but this is the time of year when my people celebrate, pray, repent, and reflect.  It's a time to spend with loved ones, with friends, and with community.  It's a time to do good deeds and give to charity.  This week and a half even has a fancy title.  It's called... The Days of Awe. 

How fitting it is that today fell during these special days.  Because there's only one way to describe how I feel about the events of the day.  In complete awe.

I'm in awe of the 8500 people who walked along the Boston Marathon Course to raise money for the Dana Farber Cancer Institute.
I'm in awe of the 66+ friends and family members who walked as Team Ari today.
I'm in awe of both of my kids who stayed alert and awake and happy for the entire walk.
I'm in awe of my brother and sister-in-law who surprised us with a weekend visit.

I'm in awe of the anonymous donor who matched all Team Ari donations.
I am in serious ohmygod awe of the $173,000+ that Team Ari has raised as of today.
And I am in awe that these funds are paying for a year-long research project on a new drug for pediatric Leukemia so that it can proceed to clinical trial.
I'm in awe that this drug may save my son's life.
I'm in awe that Team Ari can have a dramatic impact on my family and on children everywhere.
I'm in awe that this research is being done by Ari's medical team and in our city.
I'm in awe that Ari's doctor cheered alongside us in a matching red team shirt.
I'm in awe of all of the doctors and nurses and staff who have become part of my extended family.

And I'm in awe that my baby girl turned 1 today.
I'm in awe that she remains so happy, easy, and in love with her big brother.
I'm in awe that this year, which at times felt so long and scary and sad, culminated in a day filled with happiness and hope and celebration.
I am in awe of the outpouring of love that you all show me and my family.
And I am in awe of the outpouring of love you have shown me and my family since the day Ari was diagnosed.

You have all been on Team Ari since day 1.  Today was a special and heartwarming opportunity to stand united with the members of our team and join the larger Dana Farber community to work towards finding a cure.

Thank you to the walkers, the donors, and the cheerleaders.  I am in awe of each one of you.

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Hair's the thing...

When my son was bald, nobody ever rolled their eyes at him.

For the many months his head was smooth and shiny, people would smile and giggle when he would run and jump all around restaurants like a crazy monkey.

When Ari had no hair, a woman let us go in front of her at the grocery store check-out line.

And there was the time when Ari was hairless that the electrician gave us a 50% discount...on a weekend!

Oh, and how could I forget the day I was at the local ice cream parlor, I had forgotten my wallet at home and before I could even offer up my credit card, was given that vanilla cone "on the house."

Yeah. Being bald sure had its perks!


These days, nothing is half price. 

Strangers don't think my toddler's loud singing is very cute. 

When Ari demands candy at the grocery store and I give in, fellow moms give me the look.

In restaurants?  No more sympathy.


And ya know what?

I love it.

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I'm doing the shimmy shake

I used to love to go to concerts, to the movies, and to the theater.  Now-a-days, hearing myself sing in the shower is about as much live music as I get to enjoy on a regular basis.  But this month I was able to get out one beautiful summer evening for the JT/Jay Z concert, and tomorrow, I'm in for a real treat.

We're all going to see our very favorite band!  They're in town for only 1 performance and I gotta admit, I am pumped.  I know every single one of their songs by heart, I listen to them at home and in the car, and I own all of their cd's and dvd's.  I even totally splurged for really amazing floor seats.

I can't remember the last time I was this excited.

Please please please I hope they sing Hot Potato and Baby Beluga and Fruit Salad.

Can anyone get us backstage?!

I love you Wiggles!!



See you Thursday!  (We're all driving there in my big red car.)

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School!

Last week we received a packet of information from Ari's new school.

That's right.  He's starting pre-school in September! 

There was a ton of information in the packet.  He's in the "Orange room" with 8 other toddlers and 2 teachers.   There's a parent committee, after school activities, parent-teacher conferences, curriculum, and school policies.  Reading through the packet filled me with anxiety and back-to-school jitters. 

There's so much to get accomplished in the next few weeks.

First, there are a lot of things I need to buy:

A new school wardrobe,
Something special to wear on day 1 (sporty? preppy? jeans?), and of course,
A new bag to carry all of the school stuff.

Second, there are a bunch of things to do:

Get a dental cleaning, and
a hair trim (it's growing so fast!), and
read books on going to school for the first time.

Finally, there are so many tbd's:

What will everyone be like?
Will they become friends?
Are they going to be nice? 
Is a dose of Ativan necessary on day 1?
What will the separation anxiety be like?
For how long will there be tears?

Sheesh!  There's just so much to do to prepare me for the first day of school.

Good thing Ari is so easy...

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As life continues to feel more and more "normal", I'm going to attempt to go back to the blog I used to write BC (before cancer).  Yes, I'll give the periodic health update and I'm sure there will be cancer talk, but I'm going to try to make this more about the kids and less about the cancer.

S-Cool?

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Hair it is!

Remember when, a few months ago, I made the bold announcement that Ari had sprouted little hairs all over his head?  Yeah, you recall,  I referred to him as my real life chia pet.

Turned out, that big statement was a bit premature.  Within weeks, those tiny fuzzy hairs were gone and Ari's smooth head was back in full bald glory.  Truth-be-told, I was more than a bit bummed.  Those little golden flecks emerging from the follicles gave me so much hope of a normal life emerging out of this anything-but-normal year. 

But, I listened to the doctors.  I believed that once we entered the final year-long phase of treatment things would be easier, steroids would be more manageable, clinic time would be shorter, and, yes, the hair would really start to grow.

And, wouldn't you know it, those Harvard Medical School trained Oncologists were right! 

Things are easier.  Ari feels good (even on steroids!).  The chemo cocktail is much more tolerable.  Blood counts stay high.  And, this kid of mine has more energy than most 2 1/2 year-olds.

But best of all, Ari is growing hair.

He has hairs on his arms and on his legs.  He has eyebrows again.  He has tiny hairs on his toes.  And he even has hairs on his testicles.  Okay, he doesn't.  That was just for shock value.

Check this out, he has hairs on his head.  Real ones.  Lots of them.  Thick, straight, gorgeous hairs. No magnifying glass needed:

And, just like his pre-cancer days, the color remains light, golden, yellow/white, translucent.  Yup, he's a toehead.

See that smile?  I have one just like it.

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Cancerversary

One year ago, Ari was playing in the sand at Cape Cod.

And the following day he was riding the little train around Belkin Farm.

And the next day, June 4, 2012, he went to toddler gym class in the morning.

And was diagnosed with cancer in the afternoon.

I am still in shock.

And I can't believe it has been a year.

It has been a year filled with fear and uncertainty, with spinal taps and blood draws and chemotherapy, with doctors and nurses and radiation specialists.  It has been a year filled with hospital stays and anesthesia.  A year marked by hair loss.  And steroids.  And a ton of puke.  And a year filled with tears. 

This past year has been scary.  And it has been awful. 

But this past year has also been marked by extreme highs.  It was a year filled with friends, with family, with community.  A year that showed us we have the most incredible support system that anyone could ever need.  It was a year of learning and laughing.  A year of so much love.  It was a year that gave us an incredible gift of new life.  And a year that saved our son's life. 

This past year has been wonderful.  And beautiful.  And incredible.

On this anniversary of Ari's diagnosis, I continue to feel so lucky for all of the good in our lives.  And though I will never forget the scariness and sadness of the past year, what is truly memorable are the love-filled days and nights we spent as a family over the past 365 days. 

So, on this anniversary day, we celebrate Ari, Alison, our entire family, and all our friends.  We made it to this momentous day with your support and encouragement and love. 

Now let's eat cake!

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Team Ari 2013!

Do you want to...

Have fun?  Make a difference?  Go for a walk/run?  Make new friends?

And help save my son's life? 

Join Team Ari 2013!

 

• If you're a runner, join the 1/2 Marathon Team.  The run is on Oct 13.  Email Rachel G for more info.
• If you're a walker, join the Jimmy Fund Walk Team. The walk is on September 8.  Click here to register.

(Walkers can choose from 4 different courses -  ranging from 26.2 miles to 3 miles, children are welcome to walk, and even individuals who can't be at the actual event can join as a "virtual walker."  In other words, all friends, family, and supporters in Boston, across the country, and around the world are invited to join us.  We would love to have 100+ walkers!)

We're all going to raise money to support the Dana Farber Cancer Institute.  And ready for this, we have an incredibly generous match.  Every dollar that is raised will be matched (up to $100,000)!  I am confident, therefore, that team Ari 2013 will raise $200,000.  This is a HUGE sum of money that will greatly impact the lives of kids like Ari fighting cancer.   

If you need a few other compelling reasons why you should join one of these two teams, here you go:

• Team Ari is going to raise more money than any other team.  Be a part of the fun and share in the pride!
• We're going to hold a big fun summer event at our house for all Team Ari members
• Sarah Silverman is on the team.  I sh*t you not.  She's a virtual walker, but you never know, she may show up on race day. 
• The Jimmy Fund Walk is on our baby Alison's 1st birthday.  Cake for everyone!!
• You'll get a cool Team Ari bracelet.
• Free snacks and stuff all along the route and t-shirts for all participants.
• My son is counting on you.  He's still fighting Leukemia and will for another 14 months.  These funds are truly life saving. 

Thanks a million for being a member of our Team.  And thanks for signing up to walk/run.  Your support means the world to us.

Let me know if you have any questions.

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Mother's Day

I had a very steroid special Mother's Day.

The day started with a nice warm bath at 5:30am. (Ari peed through his diaper. In my bed.)
It was followed by breakfast in bed. (For Ari. He wanted milk and tortillas.)
I then went on a shopping spree. (At the grocery store.)
And I even had an afternoon cocktail at a waterfront restaurant. (I had one sip of my skinny margarita before Ari was "All done. Go home now.")

But I didn't let steroids put a damper on my day.

The weather was gorgeous and I strolled along the Boston pier with my family.
I played chase with Ari around the dining room table at least 100 times. 
I watched baby Alison crawl for the very first time.
And I even took a shower (before I left for a really fun night out with my favorite fellow moms).

It was a perfect Mother's Day and a reminder of how lucky I am to have the best job (and the best kids and the best husband) in the world.

My cup runneth over. As does Ari's. With milk.  Gallons of it.
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Medical update:

First, I know people get concerned when I do not blog often.  The opposite is true.  If I'm not blogging, things are just crazy. But not crazy bad.  I really appreciate the check-ins.

Ari has been doing very well.  (He doesn't nap anymore, he wakes up verrry early, and he has boundless energy, but this is all indicative of a toddler who feels great... and a mommy who is very tired.)

This week he started a new phase of treatment called Maintenance.  This is the final phase of his protocol and will last until mid-July 2014.  It's pretty exciting because we're almost halfway complete with this craziness, but best of all, his steroid dosage was decreased by 2/3.  The doctors warned us not to get our hopes up just yet as it can take a few cycles before side effects of steroids lessen in severity.  But, even though Ari was still moody and indecisive and a bit crazy, it was so much better than past steroid weeks.  There were no bizarre cravings, no all-night binge fests, and no all-day all-the-time miserable child.  Yeah, it still sucked.  But this I can handle.

People often ask for details of his treatment, so here we go.  The Maintenance phase:

He now receives the following chemo every 3 weeks... skip this part if you're not interested... 1 dose of Vincristine in his IV line, 6 days of steroids (twice daily), 14 nights of 6mp, and every single Wednesday, he gets IV Methotrexate.  He will also have a lumbar puncture with intrathecal chemo every 18 weeks.  (Plus oral Bactrim every Mon, Wed, Fri; Omeprezole, Zofran, Ativan, and Oxycodon as necessary.)  As I've said before, thank goodness for great health insurance.

I know this all seems nuts-o (I never in a million years thought I'd know the names of different types of chemotherapy), but I feel like we really have a handle on it.  His clinic visits will be significantly shorter and he'll only see his doctors every 3 weeks.  Easy?  Nah.  Manageable for the next 14 months?  Indeed.  We're in the process of signing Ari up for pre-school.  (I just cried as I typed that.  I'm gonna need to take his Ativan for the first few days.)  Blood counts should remain stable so fevers are less likely to cause unforeseen hospital stays.  And, I don't want to jinx it, but his hair should start to grow back. 

With things becoming more and more "normal" for Ari, I'm realizing that I have some pressing issues of my own to tackle.  I really need to finish a root canal (that was started a few days before Ari was diagnosed...a year ago).  And my toes desperately need a pedicure.  My brows are growing down my face.  But most of all, I need help getting Ari to sleep in his own bed all night long...

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Heartbroken

I love Marathon Monday.

It's hard to compare Patriots Day to any other holiday or explain to non-Bostonians what it feels like to celebrate with my fellow city-men and women.  But I'll try.  On Patriots Day, I wear jeans and sneakers, I spend the day frolicking outside with family and friends, I eat hot-off-the-grill hamburgers and hot dogs, and I even drink a beer or two.  It's a day of fun and celebration and happiness and excitement and cheer.  And everyone, from young children to college students to moms and dads and grandparents, are outside enjoying the fun-in-the-sun together. 

I have truly great memories from the last ten Patriots Days that I've spent in this city.  And by far, my favorite part of the day has been standing along Beacon Street in Coolidge Corner or Boylston Street in Boston watching the Marathon.  It is a thrill to see the runners on the route, track my friends who are on the course, and cheer along the men and women who spent months training for the special 26.2 mile journey. 

But this year, the Marathon had added meaning for me.  More than just eating barbecue and spending the day with friends, I felt it was truly my duty to be there.  Thousands and thousands of runners raised money for a variety of charities, and I wanted and I needed to stand and cheer on my friends running for CJP and my "family" running for Children's Hospital and the Dana Farber Cancer Institute. 

The 12 runners who comprised Team Ari this past Fall may not have been participating in yesterday's race, but all of the other runners who raised funds to support the doctors and researchers and institution that will save my son's life were.  On Monday, they were all part of Team Ari. 

And from my perch this year atop Commonwealth Avenue in Newton, I waved and woo-ed and encouraged them all to keep going until the very end.  Fitting, I thought, as they were making it possible for Ari to do the same. 

After we watched the Elite men and women run by, Ari went home to take a nap, and I drove back to the course with baby Alison.  I felt myself get choked up as I watched the countless Dana Farber runners make their way past me.  Every one of them who saw my sign gave a smile, a thumbs up, or a wave.  And then there was the man who stopped to thank me.  Under my sunglasses, my eyes welled with tears.  I was standing there to thank him and thank all of them.  They don't know me or little Ari, but they were out there on a mission to keep my family alive. 

And yet, the eery, sick, horrific irony of the day was that it was these generous, selfless runners whose lives were threatened yesterday.  It was their friends and family and themselves who lost their lives, who suffered debilitating injuries, and who now lay in hospital beds and in surgical suites.  Yet Ari is outside today playing in the sunshine, digging dirt with his toy trucks, and running to see lawnmowers.  While I stay glued to the news on the TV, hoping and waiting for updates and arrests, he is unphased (as he should be) by the tragedy.  He is too young to understand.

I used to tell Ari I would never let anything bad happen to him.  And then he was diagnosed with cancer at the age of 19 months old.   I couldn't protect my baby from what I thought was the worst thing ever.  Yet, I learned quickly, that there are things that are far worse - medical conditions, school shootings, Marathon bombers, and more.  While I cannot make sense out of these random acts of terror, nor can I prevent them, I can and must continue to live my life, to enjoy my children, to celebrate blessings, and to complete our own marathon. 

I cheered on runners at the very top of Heartbreak Hill this year.  And I only wish for the runners, for their families and friends, for all of Boston, and of course for my own family, that it is all down hill from here.

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Where the heart is...

Let's play name the baby.  Ari (2 years ago) or Alison (yesterday)? 

 

Same cheeks, nose, forehead, thighs!  And both so stinkin' (literally) cute.  No doubt they're related!

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And, unrelated...

What a cold, wet, rainy day it is today.  It's the perfect day to sit inside, play with toys, and order in Chinese food.  It would be difficult to go outside in this crummy weather...even in Ari's stroller-bubble.  So for our family, today is definitely not a good day to be stuck in the hospital.

Then, it's perfect timing Mother Nature, because we're...

HOME!

And everything feels right again.  Two kids eating, pooping, and waking at exactly the same time.  And, two kids laughing, playing, and tickling each other (well, Ari tickles Alison) all day long.  Ya know what, I wouldn't want it any other way.  I love watching these two interacting, and more importantly, I am so glad to be with both of them again.

Thank you Ari for getting your ANC up so that you were sent home from the hospital!  And even though you keep asking very politely, my answer is no, we cannot go back there today and see the big blue ambulance and push the buttons on the robot and eat the chocolate ice cream.  I know you like it there and I'm glad you had such a nice get-a-way.  But next time, let's go somewhere warm, maybe with a swim-up bar rather than an-all-you-can eat milk and jello bar.  Cool?
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Counts are still very low (just not low enough to be incarcerated) so we'll stay in our home and/or outside in the fresh germ-free air til next Wednesday's clinic visit.  And guess what we start again on Wednesday?  High dose steroids!  Woohoo! 

But here's the silver lining.  This will be the *final* high dose steroid course before the dose decreases by 2/3!  And I gotta believe the new dosage will be much easier on Ari.  I hope he's happier (and less hungry) for this 1 out of every 3 weeks (for the next year and a quarter).

Fingers crossed for a healthy week at home! 

And thank you all so much for the ANC dances.  They worked!

It is so good to be home!

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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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