Days 46-47

Sunday, July 22, 2012

I'm a big fan of cocktail receptions.  A few passed apps, a carving station or two, and an open bar make me one happy lady.  So when my friend Ally and I noticed a cocktail party on the patio of the hospital garden, complete with bar, apps, dessert, and even high-top tables with beautiful florals and linens, I wanted an invite.

The hospital was celebrating the #1 ranking by U.S. World & News Report.  Way to go BCH!  The 4 of us proudly posed with the sign announcing the news:

Then, I "jokingly" asked one of the invited guests if we could have a nibble and she said all were welcome.  Music to my ears!  So we sampled a little of this, a little of that, and had some sparkling grape juice... and even Ari got in on the free-food action (note the lawnmower he brought to the party.  He works for food).

We may have crashed the hospital party, but it felt good to be part of the celebration for this incredible place.  On the eve of what we think is our last night here for a while (wait, did I just spill the beans?), I feel very thankful for the amazing docs, nurses, staff, and medical advancements that have made our time here enjoyable (seriously, Ari is really happy being here!), and most of all, life saving.  Every time I kiss and hug and squeeze my most prized possession, I am reminded of how lucky he is to be alive and how these incredible professionals have devoted their lives to keeping him alive. 
Daily update:

So here it is.  I think we may go home tomorrow.  Ari is fever free.  Rash free.  Cancer free.  Now we just gotta keep it that way.

It's not all great news.  The little guy has developed mucositis from the last dose of chemo so he wakes up in pain and doesn't want to eat (think bad canker sores in his mouth and throat).  We are giving him pain meds and hope that the sores heal quickly.  But, the hospital won't keep us here just for a little mouth pain.  As scary as it may be (especially given last week's attempt), I think we are ready to leave the safety of the 6th floor and go back to our own home. 

Our preference would be a trial run tomorrow for a few hours to make sure Ari is 100% fine.  Maybe this will happen, or maybe we'll just check out and go home.  Either way, we know we are in good hands (we have a visiting nurse and appointments at the Jimmy Fund Clinic).  And we know we'll be back in a few weeks (hopefully for our final in-patient stay and it will be much much shorter than this initial one). 

I can't believe I'm going to relate my real life to the Bachelorette, but as I type this, I'm watching Emily say goodbye to Arie.  I'm only sad because he had a cool name (though I have a brother Jeff so I really could go either way).  But as Emily kicks Arie off the island, the docs are kicking us off the oncology floor.  I think both Ari/e's will be better off without the bright lights and chemicals (hair dye...chemo...I couldn't think of anything else). 

I'm excited and petrified.  I can't imagine not having the "nurse call" button 24-7.  I am not sure how we will eat without our morning delivery of eggs/oatmeal/potatoes/fruit/pancakes/hot dogs (did "room service" really believe this will all for a 20 month old?).  And I don't know how I will sleep in a different room from my baby boy.  (I probably won't for a while.)

Anything could still happen.  At this point, 47 (!!) days in, I'm fine either way.  I know we all need to get on with our lives.  So wish us luck.  And, maybe my next post will actually be from h-o-m-e!


Stephanie Fink July 23, 2012 at 12:50 AM  

Mucositis SUCKS! My friend's docs told her to expect it
To get worse for 10 days after methotrexate, and like magic, it started to get better on day 11. Here's hoping Ari shares in the magic recovery!

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