Mother's Day

Monday, May 13, 2013

I had a very steroid special Mother's Day.

The day started with a nice warm bath at 5:30am. (Ari peed through his diaper. In my bed.)
It was followed by breakfast in bed. (For Ari. He wanted milk and tortillas.)
I then went on a shopping spree. (At the grocery store.)
And I even had an afternoon cocktail at a waterfront restaurant. (I had one sip of my skinny margarita before Ari was "All done. Go home now.")

But I didn't let steroids put a damper on my day.

The weather was gorgeous and I strolled along the Boston pier with my family.
I played chase with Ari around the dining room table at least 100 times. 
I watched baby Alison crawl for the very first time.
And I even took a shower (before I left for a really fun night out with my favorite fellow moms).

It was a perfect Mother's Day and a reminder of how lucky I am to have the best job (and the best kids and the best husband) in the world.

My cup runneth over. As does Ari's. With milk.  Gallons of it.

Medical update:

First, I know people get concerned when I do not blog often.  The opposite is true.  If I'm not blogging, things are just crazy. But not crazy bad.  I really appreciate the check-ins.

Ari has been doing very well.  (He doesn't nap anymore, he wakes up verrry early, and he has boundless energy, but this is all indicative of a toddler who feels great... and a mommy who is very tired.)

This week he started a new phase of treatment called Maintenance.  This is the final phase of his protocol and will last until mid-July 2014.  It's pretty exciting because we're almost halfway complete with this craziness, but best of all, his steroid dosage was decreased by 2/3.  The doctors warned us not to get our hopes up just yet as it can take a few cycles before side effects of steroids lessen in severity.  But, even though Ari was still moody and indecisive and a bit crazy, it was so much better than past steroid weeks.  There were no bizarre cravings, no all-night binge fests, and no all-day all-the-time miserable child.  Yeah, it still sucked.  But this I can handle.

People often ask for details of his treatment, so here we go.  The Maintenance phase:

He now receives the following chemo every 3 weeks... skip this part if you're not interested... 1 dose of Vincristine in his IV line, 6 days of steroids (twice daily), 14 nights of 6mp, and every single Wednesday, he gets IV Methotrexate.  He will also have a lumbar puncture with intrathecal chemo every 18 weeks.  (Plus oral Bactrim every Mon, Wed, Fri; Omeprezole, Zofran, Ativan, and Oxycodon as necessary.)  As I've said before, thank goodness for great health insurance.

I know this all seems nuts-o (I never in a million years thought I'd know the names of different types of chemotherapy), but I feel like we really have a handle on it.  His clinic visits will be significantly shorter and he'll only see his doctors every 3 weeks.  Easy?  Nah.  Manageable for the next 14 months?  Indeed.  We're in the process of signing Ari up for pre-school.  (I just cried as I typed that.  I'm gonna need to take his Ativan for the first few days.)  Blood counts should remain stable so fevers are less likely to cause unforeseen hospital stays.  And, I don't want to jinx it, but his hair should start to grow back. 

With things becoming more and more "normal" for Ari, I'm realizing that I have some pressing issues of my own to tackle.  I really need to finish a root canal (that was started a few days before Ari was diagnosed...a year ago).  And my toes desperately need a pedicure.  My brows are growing down my face.  But most of all, I need help getting Ari to sleep in his own bed all night long...


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