8 crazy nights

Sunday, December 16, 2012

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?

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.



Friday, December 7, 2012


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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