8 crazy nights

I'm not sure where I went wrong.

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

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

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

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

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

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

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

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

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

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

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Jealous

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It's good to be home.

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

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

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

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

Plus, he visited with his old friend Wally,

 

ate popcorn with Uncle Jeff at the "movies",

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

He even went to church on Sunday morning.

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

Or is he just sick of this?

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Life

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

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

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

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

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

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

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Day 1 again

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

You guessed it. We are back on 6 north.

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

Being back blows. 

Think good ANC thoughts!!

(blogging from the iPhone, excuse all typos)

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5 days of steroids...

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

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

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

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

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

Steroids suck.

Only 1 1/2 more years of them.

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

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

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

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

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

I'm losing my mind.

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TWO!

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

 

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

 

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

 

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

 

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

 

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

 

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

 

I love you.

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Firsts

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

She's smiling:

She's sleeping:

 

 

And she's sh*tting:

 

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

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

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

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

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Insider Trading

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

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

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

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

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

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

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

TGIF!

Some recent pics...

 

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Tucker

Finding time to update the blog has proved (obviously) unsuccessful.  Between caring for baby Alison and big brother Ari, trying to wash and fold a billion loads of laundry, and cook a dinner every now and then, there's no extra time for showers or errands or blogging.  The nursery is still empty.  The thank you notes are still in their unopened package.  And, well, I smell.

But I've wanted to update you on Team Ari.  And on Ari.  But the thing most on my mind right now is Tucker.

Those of you who visited us in the hospital remember him.  His room was next to the play room and he had a big sign on his door that read "High School Senior Zone."  I first met Tucker a few days after we were admitted to the hospital.  Ari was playing with trains and Tucker was hanging out in the "teen room" across the hall.  Someone asked him if he had a license and he answered "I was in driver's ed...before this whole cancer thing."  I told him driving was over-rated but deep down, I remembered what a huge milestone it was for me to get a license, to get my first car, and to have the independence to drive. 

Throughout Ari's hospital stay, we would see and chat with Tucker often as he walked in circles around our floor.  He looked strong and healthy and happy.  I was sure he'd have that license one day soon. 

But yesterday, Tucker lost his battle with cancer.  I am beyond shocked and saddened.  I am devastated.  My heart aches for his mother and father and 4 siblings and for Tucker himself who fought so hard and for so long and still did not beat this terrible disease. 

And though I try not to, it is impossible to not let the news of Tucker's passing make this whole cancer thing feel so much scarier.  And so much more real. 

As I try to process this sad and unfair event, I will give my little Ari extra hugs and kisses, extra chips and oreos, extra time running up and down hills and ramps and jumping in muddy puddles.  I will let him stay up a little later and watch an extra episode of the Wiggles.  I will laugh when he wants to run around naked, I will encourage him to get as dirty as he wants, and I will even keep the bath water cold like he requests (but not too cold).  I will let him live it up as much as he can.

And I will too.  This is how we will keep Tucker's memory alive.

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Happy New Year

Ari has a blazer and khakis and a button-down shirt and a knock-off Burberry tie and little navy blue loafers.  But he's not at Rosh Hashanah services today.  None of us are.  Matt is with Ari at the clinic (he gets no medication passes... even for the high holy days) and I'm home with the baby.  Today Ari starts a new chemo drug that is administered weekly for 45 weeks (and it's a shot in his leg muscle. ouch.).  45!  That's basically a year...or in other words, no more shots by Rosh Hashanah 2013.

So as I sit here eating leftover challah and brisket, I rely on all my fellow Jews out there to pray on behalf of my family in synagogue today.  And I will write and recite my own prayers since I have no machzor and only memories (and google) to remind me of the Rosh Hashanah prayers.

In my own sanctuary (consisting of sofa and baby swing), I remember the acts of loving kindness friends, relatives, neighbors, and even strangers showed us throughout the past few months.  I thank God for giving us this support system.  And I thank God for medical advances, for research, for protocols, for statistics in our favor, for Dr. Hong and Dr. Silverman, for amazing nurses, for great toys, tons of free food and candy, and an incredible hospital and clinic. 

I thank God for Ari's spunk and personality and humor and joie de vivre.  I thank God for his beaming smile and happy-go-lucky attitude.  And I thank God that Ari is too young to understand.  And too young to remember. 

I thank God that the medicine is working. 

I thank God for a caring, loving, supportive husband who deserves to win Dad of the Year.  And for family members who have put all else aside to be by our sides.  And for a healthy new baby who reminds us of the joy and wonder of new life. 

On this Rosh Hashanah, I acknowledge the power and sovereignty of God and feel blessed to be me.

Avinu Malkeinu. Hear my voice.
Avinu Malkeinu. We have sinned against you. 
Avinu Malkeinu. Have compassion on me, on Matt, and most of all on sweet baby Alison and her big brother Ari.
Avinu Malkeinu. Bring an end to suffering, to hunger, and to war.
Avinu Malkeinu. Bring an end to sickness, to disease, and to all health problems.
Avinu Malkeinu. Bring an end to needles, to nausea, to oral medications, to hair falling out, to low blood counts, to infections, to complications, to port accesses, to NPO after midnight, to lumbar punctures, to bone marrow biopsies, to radiation, and to steroids.
Avinu Malkeinu. Bring an end to Cancer. 
Avinu Malkeinu. Keep Ari in remission and inscribe him in the Book of Life.
Avinu Malkeinu. Inscribe our whole family in the Book of Life. 
Avinu Malkeinu. Let the new year be a very good year for us.

I may not have a shofar, but I do have a 9 day-old crying.  Let her cries be like the shofar at Mt. Sinai, announcing God's presence. And as she cries, I am reminded of our people's cries and our people's triumphs throughout history.  May Ari, Matt, and I follow in the footsteps of our ancestors, overcoming this struggle.  And, may Alison's long powerful tekiah gedolah be the signal of the new year, a great year, for our family. 

(I should probably go feed her.)

Shana tova. 

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ABG Day 5

I will never forget the car ride home from the hospital when Ari was 2 days old.  Matt and I both sobbed.  We were exhausted and petrified, and shocked we were allowed to leave with a newborn baby when it was clear we had not the slightest clue what we were doing.  And yet, we had a nursery set up with color coordinated furniture, bedding, and decor.  We had baby supplies and bottles.  And we had every detail and doo-dad ready for when we stepped foot in our front door.  We both stayed home all week, we had family on hand to help, and we only had 1 baby for whom to care.

And still, I spent the first week (maybe two) of Ari's life a hormonal, emotional, neurotic wreck. 

This time around, we left the hospital 1 day early.  Matt used a baby wipe to clean out the infant carrier before placing sweet Alison inside Ari's dirty seat.  We sped home to a nursery devoid of dresser, crib, glider chair and, heaven forbid, a changing table.  The room had a few newborn essentials (thanks to our dear friend Danielle who took a trip to Babies r Us on our behalf) in little pink canvas baskets (we stopped at Target on our way to the hospital to deliver the baby).  Our energy had been consumed by three scary months of procedures, medications, and chemotherapy to save Ari's life.  We simply didn't have the time or capacity (okay, I'll admit, or desire) to prepare for the new baby. 

Yet, after 5 days of her life, (and still without anything in her nursery), Alison is eating and sleeping and thriving.  And I'm calm and relaxed and have only cried once.  And that was today, when I realized I could love another baby as much as I love Ari. 

All summer, I thought of nothing but my sick baby boy.  I spent every waking minute in his hospital room, by his side, giving him love and support and praying he would be okay.  I ignored the kicks (and indigestion and constipation) because I couldn't bear the thought of sharing my love with another child.  In fact, I was scared that I would never be able to do so. 

But as I watch my 5-day old tiny miracle grow, and as she gazes into my eyes as I feed and cuddle her, I am filled with more love than I ever thought possible.  Already, I cannot imagine a life without her.  It will take time to figure out how to care for both kids but I feel so much more confident in myself as a mother than I ever expected.  And I feel so overwhelmed with my ability and capacity to love.
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Ari update:

Woah, that was a deep post. 

(BTW, I may not have a changing table, but that hasn't stopped Alison from pooping every time she eats.  And naps.  18 times a day.)

In other news, Ari is home!!  He stayed in the hospital for 2 nights, had no serious side effects, and was cleared to resume this phase of treatment as an out-patient.  He will visit the clinic today and tomorrow for chemo and eye drops and steroids (Steroids!  I thought you were gone forever.  I didn't miss you.  Go away soon.) and next week he will go in twice for some other stuff (I haven't been the one with him so I'm a little unsure of the details, but I think a shot in the leg is involved.  He will love that.).  Then, we wait as his counts drop and then his body recovers.  In the meantime, he is full of energy, a bit feisty (and indecisive and cranky... thanks again steroids), and based on the enormous amount of emesis I witnessed yesterday, he is nauseus.  But, that doesn't stop him from kissing his sister, pushing his lawn mower, driving his car, and running up and down our street chasing turkeys.  Yes, turkeys.  Packs of wild turkeys.  I can't wait for Thanksgiving. 

I gotta go feed a baby and change two diapers!  And take a nap around midnight.

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Alison Beth

I hadn't pulled an all-nighter since college. 

But since my scheduled Friday 8am induction did not begin until 11pm (long story for another day), I stayed up later than I have in years.  And at 4:57am on September 8th, out popped (literally, there was not a push involved... c'mon, I deserved it) the newest little Goldwasser. 

I forgot how hungry little babies can be but tiny 6 pound 8 ounce Alison Beth quickly reminded me. Lucky for both of us, the food at the hospital was surprisingly delicious so after we settled in our room and I regained feeling in my bottom half, we shared a meal.

She started with some fruits and veggies:

Indulged on a cookie (pulling an all nighter takes a lot of energy and she needed some sugar and fat):

And then she got a little silly with the craisins.  I told her this wasn't politically correct but she didn't listen:

There's nothing better than a good meal and good snooze after a night of boozin'.  Or, in this case, epidural-in'.  And oxytocin-in'. 

Welcome to the world Alison!!  Big bro Ari couldn't be happier. 

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How it all went down:

We moved into our new home last Tuesday.

We took Ari in for what was supposed to be his final in-patient stay last Wednesday.  His counts still were not high enough to begin the next phase.  We met with the docs and came up with a plan to have me induced on Friday so that we could be home on Sunday and then Ari could be admitted Monday (today).  So far, all has gone according to plan.  Matt is currently at the Dana Farber with Ari.  Text message from Matt just received which says "counts very high, ready to rock" so Ari will be admitted today for a "2-5 day" stay in the hospital.  I am at home with the baby but will leave her with grandparents for a few hours daily to go in and be with Ari. 

Ideal?  Of course not.  Do-able?  Has to be.

The good news: Very easy delivery.  Very sleepy baby.  Home big enough for all of our stuff!  And, I can once again see my feet.

The just-got-to-deal news: Matt and I are apart.  I think he has the harder job this week and I wish I could be at the hospital to help with Ari, to be there in the middle of the night, and to reassure my little guy that everything is fine and he will get through the next few days.  (Fingers crossed only a few days!  I once again ask everyone to do an Ari dance and hope for minimal side effects and an easy week.)

The just-got-to-deal but hardest part of this news: Ari's super healthy and happy self is going to get a bunch of toxic drugs pumped through him.  He's going to feel sick.  And he'll be upset.  And he won't understand why he's in the hospital.  And then 10 days from now, his counts will all once again be depleted and then we just hope for no fevers or infections that could land him back in the hospital. 

And we do it with a newborn... a very cute and small one. 

Thanks for the continued support and love.  It means the world to all of us. 

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Job available - apply today

Seeking individual to serve as on-call birth coach in the highly likely event pregnant woman's husband is caring for toddler son in the hospital across the street. 

ESSENTIAL DUTIES & RESPONSIBILITIES
* Provide distraction during IV placement
* Assist nurses in applying cold packs to patient's forehead after she faints from IV placement
* Make patient peanut butter and jelly sandwich before epidural is administered
* Allow patient to have full control of TV remote control during labor
* Check in every 5 minutes with patient's husband to receive status update on toddler son
* Laugh at all of patient's jokes (even if not funny)
* Remind patient to ask for Attending anesthesiologist and not Resident or Fellow to administer epidural
* Provide non-judgemental support when patient requests epidural at the earliest sign of discomfort
* Call for nurse assistance when patient poops on the table
* Pretend patient did not poop on table and never tell a sole if she did
* Take pictures during labor and video during last 3 minutes of delivery. 
* Do not post video/pictures on Facebook or YouTube
* Remind doctor to collect cord blood and tissue and call Viacord within 1 hour after birth
* Provide encouragement and support throughout labor, but without ever physically touching patient (unless specifically requested)
* Promise to forget what patient's female parts look like immediately after birth

QUALIFICATIONS
* Ability to perform the essential tasks noted above in a satisfactory manner.
* Patience and empathy and thick skin in the event patient gets a tad nasty
* Incredible PB&J making skills
* No fear of blood, needles, pain, and any other medical procedures
* Relatives may not apply.  (Sorry folks, Thanksgiving dinner would never be the same.)

EDUCATION/EXPERIENCE
* At least 25 hours watched of TV programs showing births such as "16 and Pregnant", "Teen Mom", "A Baby Story", "I didn't know I was pregnant", and/or viewings of the live birth at the Science Museum.

To apply please submit resume and cover letter.

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Update:

As anticipated, Ari was not admitted to the hospital today.  He is now scheduled for a 5-day stay beginning next Wednesday. 

(I knew I shouldn't have packed a bag.  I jinxed it.)

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What's the plan Stan?

I am a planner.  I make to-do lists months before I host a party.  I write out itineraries for vacations.  I even go online and plan my menu selection before going out for dinner.  (I forget what it's like to go out for dinner.)  I want to know as much as possible in advance and I don't like surprises.

But when it comes to this cancer stuff, there's no way to plan.  I've learned to listen to a proposed plan and then anticipate a last-minute change.  Even with this new mindset, I was mentally prepared for an in-patient stay beginning today, a move to a new home early next week, and then a few days of unpacking before my water broke and a new baby appeared.  But, as I should have expected, Ari's counts weren't high enough to begin the new meds today.  So we are now hoping for a Friday start date but may be waiting until next Wednesday to check back into Children's Hospital. 

And this, my friends, brings us ridiculously close to my due date.  With my luck, I will be having this baby on Tuesday.  Why Tuesday?  Well, it is moving day.  And, we will probably be back in the hospital.  But really, we can be 3 places at once.  No big deal.  So I'm just going to plan for this insanity and then be pleasantly surprised if things change.

In the meantime, we are packing up our place, keeping Ari happy and healthy (I really could not have prevented his bloody forehead collision with the coffee table), and just taking it one day at a time.

Can someone remind me what goes in a hospital bag?  I should probably get one together.

And, this baby doesn't need furniture or a glider chair or a bassinet or anything else, right? 

Oh, and, will someone please come over and shave my legs?

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Where have I been?

There have been no celebrity sightings.  No strange medical phenomenons.  No big tests and no bad numbers.

Life is normal.

Okay, normal is a bit of a stretch.  Between 3 back-to-back chemo courses, 1 lumbar puncture, 8 nurses visits (to administer meds), countless clinic visits, and a whole lotta puke, things have felt surprisingly ordinary.

Oh, right, and then there's the fact that Baby Girl G is going to arrive in the next 3 weeks so we've been trying to prepare (more mentally than anything else).  And, uh, we go back to the hospital next Wednesday for a 3-5 day in-patient stay for a nasty new drug.  Um, err, yeah.... and, surprise, we're moving... in approximately 2 weeks.

So nothing is normal.  Except one thing.  This kid of ours is just as happy, goofy, energetic, zany, and carefree as always.  He is back to sleeping 12 hours a night (I'm lucky to get 4), he is eating brussel sprouts and pizza and smoked salmon, and he is happiest playing outside all day long.

His mommy is a bit stressed.  But he is not. 
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Medical update:

I know I've been slacking on the updates.  I apologize!  Here we go:

Ari has now finished (as I stated above) three out-patient chemo courses.  Most of the drugs have been administered at home, either by a visiting nurse injecting directly into his port or in liquid form squirted into his mouth by his daddy (mommy can't touch chemo because of the soon-to-be born baby).  He had a few infusions (chemo given over a longer period of time) at the clinic and 1 dose of drugs injected intrathecally (in his spinal fluid) during a lumbar puncture.  The spinal fluid removed during that test was negative/healthy/cancer free.  Let's hope that continues forever.

Ari has only experienced mild nausea as a side effect of all of these drugs.  He still enjoys the nurses visits and the clinic appointments, and only complains when they remove the sticker from his chest which protects his accessed port.  Oh, and he freaks out when I make him get dressed every day.  And change his diaper.  Or make him go inside.  But none of that is cancer related.

He is now 1 day into a 10 day off stretch before he is readmitted to the hospital for a high dose of a drug that has some potentially really icky side effects.  If he sails through this phase, we will be home in 3 days.  If he has any bad effects (fevers, etc), we may be stuck there longer.  Compared to our first hospital stay, this should be quick and relatively easy .  (Except I'll be 38 1/2 weeks pregnant.  Please no roommate.  I need a private bathroom!  And please, no baby.  And, because I don't ask for much, please no side effects!!)

Thanks for all of the calls and emails and visits.  If I don't update for a few weeks, don't worry.  In my free time, I'm trying to nap.  Or bathe.  Or watch RHONY.  

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Team Ari

I'm not a runner.

But over the last 2+ months, I learned that Matt, Ari, and I surround ourselves with runners.  And these incredible individuals don't just run for exercise. 

Our friends, family, neighbors, sorority sisters, fraternity brothers, camp buddies, and CJP family ran to our side with meals and toys and cards and visits.  And they ran with smiles and encouragement and thoughts and prayers.  Some ran sprints and some long distances.  And they ran as fast as they could to be by us for the most important race ever - the race to save Ari's life.

No ribbon or medal (or thank you note... ahem, I promise they're coming) can thank all of you runners for the outpouring of love and generosity you have already provided us.  Without your support, we wouldn't have made it this far, and we wouldn't have the energy or mind strength necessary to stay up-beat and energetic and committed for the next 2+ years.  This will be one heck of a marathon and when we cross the finish line, we know you will not only be cheering us on, you will still be by our side, holding our hands, lifting us up, and ensuring we win. 

You are all part of our team.  And we are forever grateful.

I'm so very proud to introduce you to a subset of this team - a group of actual runners! 

Meet Team Ari, comprised of 14 incredible friends who are running the B.A.A. half marathon on October 7th to raise money for the Dana Farber Cancer Institute.

Emily Beck, Jennifer Cramer, Rachel Glazer, Eli Gurock, Sheri Gurock, Neal Karasic, Adam King, Caryn Lazaroff, Emily Leventhal, Bryanne Mahoney, Leah Ofsevit, Eric Ritvo, Seth Rosenzweig, and Sami Sinclair are not only running for Ari. They are running for every child diagnosed with cancer, every adult fighting day and night to beat the disease, and every family running their own marathon. These friends of ours are training hard and sacrificing their knees and ankles and nipples to raise funds which will help the Dana Farber find a cure for cancer.

For more information on the Dana Farber, click here. This is the story I tell when explaining how lucky we are to be treated at the Dana Farber for the next two years:

A few days after Ari's diagnosis, we asked one of the nurses and then a doctor if we should get a 2nd opinion... just because it's the right thing to do.  Both individuals said the same thing.  They would be happy to give us names of docs around the country, but that people come from around the world to the Dana Farber for their 2nd opinion.  And our head doctor, Lewis Silverman, is the big cheese when it comes to pediatric Leukemia.  He researched and wrote the protocol that kids follow which has significantly increased the remission and cure rates for Ari's specific type of cancer.  He is known world-wide as the man who keeps kids with Leukemia alive.  And all of his work and research has been done through the Dana Farber.

The more funding the Dana Farber has, the more research they can do and the more advancements they can make.  And the more lives they can save.  I thank my lucky stars that we live in Boston and that Ari has Dr. Silverman and the Dana Farber on his team.

And as I've described before, everything at the Dana Farber is fun, is friendly, and is focused on kids and their families.  There are fish tanks, art projects, musicians, toys, games, and an unlimited supply of playdough and bubbles.  There are countless staff members there just to keep the kids happy and engaged.  When we're at the Dana Farber clinic, we feel safe, cared for, and optimistic.  We trust every nurse and every doctor.  We have fun!  It feels like we are with our family.  And it's only been a few weeks.

I learned over the last few months to both ask for and accept help.  So on behalf of the 14 runners, the hundreds of children and thousands of adults currently being treated at the Dana Farber, and of course Ari, I ask for you to join Team Ari as a supporter, a cheerleader, or a friend.  Donate securely online, come out and cheer on October 7th, "Like" us on Facebook, and/or help us spread the word. 

To learn more about the Dana Farber or the team, please check out http://tinyurl.com/bn78kuu.

You're already a member of Team Goldwasser.  Now join Team Ari.  Thank you for everything.

Go Team!

Love,

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Viva la Vida

We all know I love famous people.  It's pathetic.  I get a kick out of meeting anyone... from reality TV has-beens to Oscar winning movie stars.  Now, don't get me wrong.  I would trade a sit-down meal with any and every famous person of my choice for a healthy 100% cancer-free son (in a heartbeat), but I try to "look on the bright side" of this situation and meeting a few famous folks makes this process a little easier.  Okay, and maybe even fun.  And sometimes thrilling.

So, when I heard we missed Chris Martin from Coldplay last week, I was bummed!  And he didn't just shake hands.  He sang for the children!  He played keyboard alongside older kids!  He gave each patient a goody bag with an Ipod and other fun stuff.  And he gave every parent... front row tickets to see Coldplay in concert! 

Sigh. 

It's cool.  I have Coldplay on my ipod.  I've seen them before in concert.  I can always watch the show on Youtube.  And this isn't about me.  Ari wouldn't have appreciated the visit anyway.  At the end of the day, we were much happier meeting Wally the Green Monster (especially since we thought it was Cookie Monster) than Gwyneth's talented hubbie.

And by "we", I obviously mean "he".
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Update:

Today ended a 5-day chemo course.  Thank goodness we chose to do this easy-peasy week as an out-patient.  Here are some of the highlights of the week:

Ari and Daddy snoozed:

Schmoozed:

Screw-ed:

Boozed:

And watched the Red Sox lose (from John Henry's box!):

It was a fun few days through and through(s).

We spent a few short hours each weekday morning at the Dana Farber Jimmy Fund Clinic and then we made a cameo on our old floor at Children's Hospital yesterday and today. I know this may sound crazy, but it was a great week! Ari had a blast at the clinic (so did we). Wednesday was Happy Birthday Everyone day (cake, ice cream, and presents for all... even the parents), Thursday was ice cream sandwich and Red Sox day, and Friday we got to "make your own pizza" and meet Senator Scott Brown. The only time we heard Ari complain was when we made him leave.   No joke.  And this weekend, Ari was thrilled to be back in the hospital, flirting with the nurses and playing with the toys. 

We have 2 days off before starting the next round of treatment on Wednesday (all outpatient and this time chemo is administered at our home so we don't have to go in to the clinic.  What will we do all day?!  Who won't we meet?  What fun activities will we miss?  Do you think we can ask to get the chemo there?). 

Ari has been feeling great and his counts are high so he is enjoying play dates and outdoors outings (shhh don't tell anyone but we did go to Target yesterday...we washed hands well afterwards).  Now that he's no longer port-accessed, he can go swimming and take a real bath. 

Side effects and low counts are inevitable as the chemo begins to work its mojo and we expect a not-so-fun next two weeks because of the double dose of meds.  But who knows... this kid is truly incredible and doesn't let much get him down. 

Oh my goodness and how did I forget... Ari slept 12 hours straight the last two nights!  Hurray! 

(I bet I would have slept well if I had met Chris Martin and gone to the Coldplay concert.)

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Rub a dub dub

It had been over 8 weeks since Ari last took a real bath.  I'm not exaggerating.  He received 3 sponge baths while in the hospital and 1 soap-less dunk in an inflatable pool.  But it was more than 60 days since his feet were scrubbed, his armpits washed, and his hair head shampooed.  I love him more than anything, but I did not love the way he smelled.

So after a little coaxing (I got in), Ari agreed to splash around in a bubble bath.  Once he was in, he was back to his old bathing self.  He even booted me out so he could enjoy the tub all to himself.   Much to his chagrin, the water got cold and his skin turned pruney, and we insisted bath time was over.  He did his best to convince us to let him stay just a little longer in the cool water.  He happily kicked his legs, sang a song, and washed his face.  And then, at the last possible minute, he did the one thing that would ensure a longer bath.  He pooped.

I should have known it was coming.  Watching him frolic in the water, he was truly like a pig in sh*t.
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Weekend update

One week at home and I have almost forgotten what life was like in the hospital.  Everything feels right again and we are back to our normal routine.  We even dined out at a restaurant Sunday night (early in the evening to avoid crowds and we sat outside to avoid germs).  Ari is eating well, playing well, and sleeping somewhat well (okay, he still wakes up multiple times per night.  I blame the IV fluids and multiple diaper changes for 48 straight nights.)

As Ari chants over and over again, all 3 of us are just so "hap-py, hap-py, hap-py." 

Today, Ari had a bone marrow biopsy (results tbd) and tomorrow, he starts a 5 day chemo protocol (immediately followed by a new 3 week phase).  We had made the choice to do these 5 days in-patient, but because home life is so wonderful, and because we live so close to the hospital, and as our hot shot doc told us today, "there's really no medical reason to do this in the hospital," we're going to remain at home.  We will go to the Dana Farber Jimmy Fund Clinic every morning for 5 days for a few hours of meds and checks, and then we will be free to go home.  If Ari has any negative side effects or if we get at all nervous, we can check into the hospital. 

As of this morning, Ari's blood counts were all stellar and nothing signaled the return of cancer cells (though the bone marrow will be a better indicator), so we can sleep easy tonight (who am I kidding?  between the peeing, the leg cramping, and the sweating...and Ari calling "mommmmmy" at 2:30am, I don't sleep much).

Most importantly, Ari's spirits are high and he continues to be so much fun, so funny, and so incredibly brave. 

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