Thanksgiving 2014

I've had a blog identity crisis.  You may have noticed the silence.  I have material.  In fact, I have tons of silly stories, happy moments, and great updates.  Yet, I haven't had the urge to write.

Until today.

Thanksgiving.

I am so thankful.  I can't even express my gratitude sufficiently.

I'm thankful for so very much - for my husband (the most incredible father), for Ari's continued good health, for Alison's hilarious antics, for our friends and family, for Team Ari, and for outstanding medical professionals who have become a part of our family. 

I'm thankful that for breakfast today Ari is eating raisin bread with hummus and Alison is eating ketchup.

I'm thankful that Ari and Alison dance gangnam style together every afternoon.

I'm thankful that Ari holds Alison's hand every time they cross a street.

I'm thankful that my kids are both in the 98% for height.

I'm thankful that the four of us roll on the floor laughing.  Regularly.

I'm thankful that my kids fight over who gets to flush a poop.

I'm thankful for grandparents who will drop everything to love and care for my family.

I'm thankful for race car and fire truck grocery shopping carts.

I'm thankful for Bravo TV.

I'm thankful for lots and lots and lots of hair (and a child who refuses to get it cut).

I'm thankful for a tv in my car.

I'm thankful that Alison calls a fire truck a fire f*ck.

I'm thankful for snuggles.

I'm thankful for Disney World.

I'm thankful for bruises that come from normal kid activity.

I'm thankful for 4 consecutive months of healthy blood work.

I'm thankful my kids love going to school.

I'm thankful for recent birthdays (Ari 4, Alison 2.)

I'm thankful for potty humor.

I'm thankful I could keep going and going...

I'm thankful for blinks and tears and breaths and tantrums and laughs and smiles and jokes.

I'm thankful every morning when the kids wake up and every night when they fall asleep.

I'm just so thankful for my children, my husband, my family, my friends, my life. 

Happy Thanksgiving,

Read more...

Eye love Ari

Have I ever told you that I sleep with my glasses on?

I want to be prepared if one of the kids need me overnight.  I want to know I will see clearly.  And if I need to jump into action, I'm ready.

Okay, it's sorta crazy.  And I may be a bit paranoid.  But I don't think you can blame me.  For over two years, I've lived every second in a state of panic.  I've over analyzed every single thing about my son, from the temperature of his skin to the number of bruises on his legs to what he's eating to when he's pooping to how he's feeling to whether or not he's showing any number of possible reactions to medications.  I've gone into detail with his school, I've talked to all of the parents, I've made his friends sanitize before they come into my home.  I've called the on-call oncologist at least 100 times.

I'm freakin' psycho nervous.

But at the same time, I've tried to give Ari a normal childhood, filled with fun and play and friends and activities.  And so this summer, we decided to send Ari to day camp.  First, we sent him to his school's camp, and when it ended, we signed him up for another camp.

I toured the camp and I spoke to the director only once.  I don't know the names of his counselors.  And I don't even know the names of the other campers.  But this morning, I packed a lunch and a swim bag, I applied his sunscreen, I had nervous diahreah, and I drove to the camp.  I was shaking the entire drive there.  Confident Ari would say he didn't want to go, I almost turned the car around and went home.  Maybe he would cry and refuse to get out of the car?  Or maybe he would ask me to stay with him?  Either way, this was a bad idea.

But then we arrived.  A counselor greeted us at the car, unbuckled Ari from his car seat, and whisked him away.  And he was fine.  Smiling, holding her hand, and waving goodbye, my little baby boy went to his first real day of camp. 

I know he deserves this.  It's an opportunity to be independent, to be normal, to play all day, to experience new things, to make friends, and to have fun (without his mommy by his side).

Of course, I've been crying all morning.  But I think they're mostly happy tears. 

Maybe this is a sign that I can begin to sleep with my glasses on the nightstand.

And I can't wait to pick up Ari this afternoon and hear all about camp.  Hope I'm not so excited that I make a big spectacle.

Read more...

It's not easy being green

Another steroid course starts tomorrow.

Oh wait. No it doesn't!  Because there are no more steroids!  And no more chemo!

Treatment officially ended July 14 and we celebrated this past weekend with a small gathering for close family and friends. 

We forgot to tell people not to bring gifts so Ari and Alison both received a few awesome new things.  They now have cool legos and books and bubbles and toys and...

Frogs.  2 of them. 

(I'm toad-ally not joking.  This is a perfect way to toad-st the end of treatment.  Because after caring for a kid with cancer for 2 years, everyone wants to care for 2 baby frogs.)

Let me introduce you to Kermit and Hermit. 

The little guys sleep all day and party all night.  (Sorta like a newborn baby...remind me never to do that again.)  They eat crickets, they take baths, and they like a daily shvitz in their sauna.  And their scent...well, let's just say, it makes me want to croak.

Frog's legs recipes anyone?

I'm kidding.  These guys are pretty fly.  But I gotta get going...breakfast today at Ihop.

Read more...

7-14-2014

I write this post on the thirteenth of July, 2014.  It is the evening before a very big day.

Tomorrow will be extraordinarily exciting.

I've been looking forward to the events of July 13, 2014 for such a very long time.

It will be a special day for a special person and their family.

I'll watch the events with bated breath.

And I'll toast immediately following the conclusion.

I'll shed both happy and sad tears. 

And I'll say a most heartfelt prayer for the future.

I don't know what will happen after tomorrow.  The internet doesn't even know for sure. 

Part of me doesn't want the day to come.  The other part of me has been waiting for way too long.

Will it end well?

Only time will tell.

July 13, 2014.

It's Bachelorette Andi Dorfman's overnight dates!! 

Obviously I'll be watching this episode seven hours after Ari receives his final dose of chemotherapy...but let's not jinx anything...

Read more...

EOT

I had my first end-of-treatment nightmare last night.

Yeah end-of-treatment.  EOT for short.

Just 2 weeks (and 2 days) til EOT.  Today an echocardiogram.  Tomorrow a lumbar puncture.  Some IV chemo.  14 nights of 10:00pm oral chemo.  A week of steroids.  2 final doses of methotrexate.  It's just one final course.  Seems like so much as I write it out but feels like so little.  Two (plus) years felt so long and yet went by so fast. 

I never thought I'd say this, but I'm not ready for it to end.  Light at the end of the tunnel?  I can see it now.  But what if it doesn't stay lit?

I asked the doctors for more chemo.

They said no.

Ari has just two more weeks. 

And then we'll find out if it all worked.

(I should start taking Ari's Ativan.)

Two years ago:

 

Two weeks ago:

 

Two weeks to go...

Read more...

Cancerversary 2

I remember the events of June 4, 2012 like it was yesterday.

I recall the car ride from Ari's gymnastics class to the hospital for a chest x-ray.  I can hear the sound of the pediatrician's voice as she told us to head directly to the ER and to brace ourselves for a "long day."  I can see the face of the oncologist who came in to tell us Ari's diagnosis.  And I vividly remember my reaction when she told us he would be in treatment for two years.

Two years?  That was longer than Ari had been alive.  Two years?  That seemed like forever.  Two years?  That would make him almost 4 years old. 

Two years?  I remember thinking, Will he even survive that long?  Will we?

But, the days turned to weeks and the weeks to months.  The seasons changed.  With one foot in front of the other, and somehow...

Yesterday marked two years.

Can you believe it?

Two years!  I can't even begin to list all of the medical procedures, the rounds of chemotherapy, the lumbar punctures, the doses of steroids, the hospital admissions, and the countless trips to the ER for fevers.  I recall all of it.

Two years!  I also remember the birthdays celebrated, the songs sung, the trampolines jumped, the  baby birthed, the candy stores sampled, the pre-school student dropped off and picked up, the friends made, the toys purchased, the puddles splashed, the parks visited, the memories made, the fun had, the life lived.

Two years!  Ari made it.  We made it.

Ari still has two final rounds of chemotherapy, 1 more lumbar puncture, and his last scheduled chemo in mid-July.  But even though he's not yet done, yesterday was a huge milestone. 

I made a video to document the two years.  It may be premature to share it, but I'm going to celebrate with you anyway.

Two years in 11 minutes: https://vimeo.com/97039421

(Lemonade stand this weekend?  All $ raised goes to pediatric cancer research.  Maybe Sunday 11am...)

Read more...

Breaking up

Dear S.M.,

I feel terribly doing this so openly and honestly, but I need to admit that our affair must end.

It has been a great many years together.  From Somerville to Brookline to Newton, you stayed a constant part of my life.  We had early morning get-togethers and very late night rendezvous'.  Whenever I needed you, you welcomed me.  You shielded me from the rain.  You provided me with home cooked meals.  You listened when I complained.  You even encouraged a loving relationship with my children.  They will miss you.  (And Ari is still so sorry he broke one of your vases.)

But I gotta admit, you became stale, and I found a new love.  I'm sorry to tell you, but I haven't felt this excited or this energized in a long time.   I think about you in the morning as I make my breakfast.  And I dream about your nuts when I go to sleep at night.  And I'll do just about anything to visit you every single day.

It's time to make our split official.  Goodbye Star Market.  It's been real.

And hello Wegman's!  I adore you.

Read more...

3-2-1

There are so many funny stories to share. 

There's the one about my husband sending me to get Ari a haircut and texting me a pic of David Beckham to use as a guide for the stylist.  (Needless to say, my son is gorgeous, but he looks as much like DB as I look like Posh Spice.)

Oh, and then there's the story of Alison trying to do everything just like her big brother...and Ari trying to help her be just like him.

And speaking of trying to be something we're not, there was that time I used a flat iron on my 20-month old:

So you see, the past weeks have seen lots of laughs and tons of fun and an explosion of love between my two amazing kids.

But wanna know what's most exciting?  9 more weeks.  3 more rounds.  2 years almost done and done.  Adios chemo.  Soon we'll really have something big to smile (and blog) about.

Read more...

Child's Play

I've read articles warning Moms not to post things on the internet that could be mortifying to their kids later in life.  I've considered this and made the conscious decision not to post anything too graphic or too naked.  But let's be honest, Ari won't care about any of this content when he gets older.  He will never even google his own name. Right?  Right.

So with that said, Ari has a girl friend named Shayna who is cute and sweet and very smart.  It's really no wonder she and Ari have a special connection.  Aside from these characteristics they both share, the best thing they have in common is a vivid imagination and a desire to play together. 

And they sure do know how to play.

They play fire station. 

They play doctor.

They play another kind of doctor.

And then they play nap.

Can you believe it?  They're both only 3 years old!

What will four-play look like with these two?!

Read more...

19 months

To the average mother, 19 months old isn't anything special.  There's no cake or goody bag, no balloons, no song, and not even a Facebook post.  19 months.  It's a little more than a year and a half.

Alison turned 19 months old last week.  For me, that number has a chilling connotation. I tried not to dwell on the significance of the number, but I'm still haunted by that age.  Because Ari was just 19 months old the day he was diagnosed with cancer.  I have been acutely aware that the date was nearing.  I looked for signs and symptoms all over my baby girl.  Swollen glands? No.  Sore legs?  No.  Lack of energy?  No.  Asthma like symptoms?  No.  Does she too have cancer?  I don't think so.

But I will admit that when I brought Alison to the on-call pediatrician two weeks ago for her first sick visit ever, I did not believe the diagnosis.  "It's just a virus."  It can't be a virus, I thought.  That week, she was 18 1/2 months old.  She was lethargic and febrile, had no appetite, no smiles, and no clapping or singing or jumping.  It must be vicious cancerous cells taking over her little body.  I asked the doctor bluntly.  "Do you think she has cancer?"  The doctor looked up and questioned, "What would make you think that?" and before I could even explain, I burst into tears. 

19 months old.  She's just a baby.  She likes to play in dirt and splash in puddles and cover herself in tomato sauce.  She sings and runs and dances all day long.  She is happy and silly and she is healthy. 

She does not have cancer.  She had the flu.  (Bad timing, right?)

Tonight begins the holiday of Passover.  Not to be too dramatic, but I feel like a slave in Egypt.  Pharoah is the cancer and though the medicine is working, we've been wandering in this desert of chemo and leukemic cells and fear for way too long.  But even though I can see freedom in my future, even though we already witnessed a miracle, I don't think I'll ever feel free.  Will Pharoah's army target Ari or Alison or my family again?  I don't know.  I sure hope and pray not.

But I will push this fear aside, and I will celebrate the miracles of life and laughter and happiness and freedom tonight and this week and throughout the coming years.  And you know I'll be drinking all 4 glasses of wine.

Next year (or maybe this Fall after we've wandered long enough) in Jerusalem.

Chag sameach people.

Read more...

My Birthday Gift from all of you

I have incredible news.

 

We recently heard from Dr. Lewis Silverman that the money used from Team Ari over the last 8 months in a year-long research project (with mice and with a new cancer drug targeting pediatric leukemia) is working as they hoped!  The next step to complete this pre-research is to combine the drug with other existing drugs to try to develop a method for using this drug in humans or more specifically...in kids!

 

The assumption is this drug will soon be going to clinical trial!  Real kids with relapsed leukemia who don't have many options left will be given this drug.  We talked about how this money could be life saving.  And it really really is going to do just that. I have no way to thank you for your hard work on Team Ari 2013.  But of course, I'd love for you to walk with us (or donate!) this year! 

 

Here comes Team Ari 2014!  In fact, today is my birthday and all I want today is for you to join the team or donate to the cause.  The Dana Farber needs you!  The research needs you.  The mice definitely need you.  And the kids need you.  Of course, Ari needs you.

 

This year's walk is on Sunday, September 21.  This will be approximately 6 weeks after Ari finishes his 2 years of treatment.  We will have a lot to celebrate!  Like last year, most of us will be walking the 3 mile route and the more kids the better.  It's such a fun and exciting day with food and music and prizes and the feeling you have when you walk across the finish line is one of success and pride and sheer joy. 

 

Sign up today www.jimmyfundwalk.org/2014/teamari and use code Brunch to receive $10 off the registration fee. Or, if you're registering your whole family, call Sarah Dillon (sarahc_dillon@dfci.harvard.edu  617-632-6434) and she can help you easily register every member of your family without having to do it online yourself multiple times.

 

With deepest appreciation,

JulieSue (and Matt, Ari, and Alison)

Read more...

Dirty World

We brought home a lot of stuff from Disney World.

Ari got a toy monorail, Alison got a glittery Little Mermaid doll, and Matt got 4 pairs of jeans (don't ask).  The kids came home with crayons in the shapes of dolphins, Mickey stuffed animals, board games, tiaras, hats, and key chains.  We purchased lots of pictures to remember the smiling faces and to capture the moments of pure joy and excitement.

Oh, and we got something else.  It was a unique memento from the trip.  I'm not sure if it came from the airplane or from It's a Small World or from the Moroccan restaurant in Epcot.  But Alison was the one who brought it home.  Then she gave it to me.  I passed it along to my parents.  And because we try to teach the value of sharing, I have now handed it over to Ari. 

We all have the yuckiest little virus ever.  High temp, bad cough, and general feeling of malaise.  Alison and I are finally feeling better.  Ari is just starting to show symptoms.  Luckily his counts are high, so although he will need to go in daily for IV antibiotics (because even though we are 99% certain he has the same virus, they need to be 100% sure he does not have an infection), he will not be admitted to the hospital.  So we're home, jacked up on Tylenol and Gatorade, and still thinking about the fun we had at the Germiest Happiest Place on Earth.

"Look Mom, I made Cinderella's Castle with my fruit leather..."

Dum-bo-nus of our trip. Let's hope Ari is better tomorrow-land.

(Ok. I really struggled with an ending. Forgive me. I'm sick!)

Read more...

Make-another-Wish

Dear Make-a-Wish,

We got back from Ari's wish trip on Tuesday, and after much reflection, I need to ask a favor.

You see, here's the thing.  The trip was amazing, stupendous, and truly unforgettable.  I can honestly say the week away (our first in two years) was medicine for the soul.  It was an escape from chemo and cancer and for all of us was a healthy dose of laughter and family and fun.  In fact, it was almost perfect. 

Ari rode almost all of the rides (including Tower of Terror and Test Track):

He saw almost all of the animals on safari:

He swam in the pool almost every day:

He ate almost 9 full containers of yellow popcorn:

He met almost every character:

He fed almost every dolphin:

He roasted marshmallows almost every evening:

He finished almost a whole Mickey rice krispie treat and ice cream:

And he had a smile on his face almost the whole entire time:

It was a jam-packed fun-filled week and he did almost everything.  Another week would definitely cover almost everything else. 

Thank you Make-a-Wish for a magical, wonderful, incredible trip.

Love,

Read more...

Hair we go again

Have you seen Ari's hair lately?

Well, take a good look now or you may miss it.  Because it's falling out.  Again.

WhatthefuckpeopleIthoughtwewerepastthisstage?

Yeah so I'm slightly annoyed.  And sad.  And I may or may not have been sobbing when I called the doctor yesterday to ask if it is normal.  And it is.  We have been warned for months that this would probably happen.  "Chemo attacks rapidly growing cells."  And hair falls into that category. 

So sayonara thick blond beautiful hair.  Hello pity looks.  I haven't missed you.

Count down to Disney World 3 1/2 days.  I can't wait.  The to-do list is long and I'm slightly overwhelmed: Laundry, pack, shave legs, and get Ari a hair cut.  Oh wait, scratch that last one off the list.  Phew - one less thing to do. 

See I always look on the bright side.

Hair today, gone tomorrow.

Read more...

Grey is not gorgeous

I try not to brag, but I've been sporting a new accessory.

I deserve it!  It celebrates two births, a million sleepless nights, and approximately 50 courses of Ari on steroids.  It reminds me of the stress and the sad from the last year and a half.  It signifies maturity and womanhood.  And it is a sign of the deep love in my life.

This new accessory of mine is lush and plentiful!  And it's sparkles and shines and glistens and glimmers.  It is colorless and flawless.  In the sunshine, it reflects light.  With the snow covered ground and the bright winter sun, it's actually blinding. 

And I can't wait to get rid of it.  Push present?  More like, push penalty.

Adios grey hair.
___________________________________________________

A quick update - Ari is halfway through a steroid course.  In a few weeks, he will have another steroid/chemo course, a lumbar puncture, some time to recover, and then... we leave for Disney World!

When we return home, he will have 4 more months of treatment.  Excited?  Nope.  I'm petrified. (See this blog post for the exact way I feel about the end of treatment)

Back to Disney... I'm pumped.  We have park tickets, hotel reservations, and a rental car reserved.  We have summer clothes and swim suits and a whole lot of sunscreen.  We need dining reservations and tips (anyone?) and a crash diet or a juice cleanse and some new sandals.  And then we're off to the Happiest Place on Earth.  I may even shave my legs for the occasion!

Read more...

Love letter

Dear Josephine,

I found the present you left in Ari's school bag. 

Ari tried to hide it from me, but I knew something was up.  First, he hung his own backpack on the hook.  Then, he told me he did not leave any half-eaten food products in the zippered pouches (which never happens).  And finally, the give-a-way, he shrieked with rosy-cheeked embarrassment "noooo mommmmmy" when I tried to look through the bag myself. 

What could he be hiding in there?  A live animal?  A dirty diaper?  A stolen pack of gum?

But oh my god little girl.  It was the last thing I expected to see. 

I saw it neatly folded in the very bottom of his bag.  I opened it up, studied it closely, and smiled.  My first thought?  That's cute.  Then I nervously chuckled and pondered how this could happen at such a young age.  And after a few minutes, smiles turned to sadness and laughter to lament.

Your little gift was much more than an innocent picture.  It was, in fact, the very first sign of his loss of innocence.

So listen up sweetie.  You are a nice girl and you come from a good family.  Your long blonde curls may bounce in the wind and your beautiful blue eyes may sparkle in the sunshine.  I see the way he holds your hand and walks by your side.  And I am the first to admit he is a catch.  My Ari is special and smart and funny and caring and damn good looking. 

But you're only 3.  And I'm not ready to be a grandma.

Hands off my man.  Cool?

Love,
Ari's Mommy

Read more...