19 months

Monday, April 14, 2014

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.

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My Birthday Gift from all of you

Thursday, April 3, 2014

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)


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Dirty World

Friday, March 28, 2014

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!)

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Make-another-Wish

Friday, March 21, 2014

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,

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Hair we go again

Saturday, March 8, 2014

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.

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Grey is not gorgeous

Tuesday, February 11, 2014

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!

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Love letter

Sunday, February 2, 2014

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




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Heat wave

Tuesday, December 31, 2013

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

Saturday, December 28, 2013

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...

Monday, December 16, 2013

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

Thursday, December 5, 2013

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

Wednesday, November 27, 2013

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

Thursday, November 14, 2013

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

Wednesday, November 13, 2013

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

Thursday, November 7, 2013

Happy things that make me cry:

1. Romantic comedies:

2. Weddings:


3. School pictures:


CHEESE!-y

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Ari is turning 3!

Sunday, October 27, 2013

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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