Team Ari 2013!

Monday, May 20, 2013

Do you want to...

Have fun?  Make a difference?  Go for a walk/run?  Make new friends?

And help save my son's life? 

Join Team Ari 2013!

  • If you're a runner, join the 1/2 Marathon Team.  The run is on Oct 13.  Email Rachel G for more info.
  • If you're a walker, join the Jimmy Fund Walk Team. The walk is on September 8.  Click here to register.
(Walkers can choose from 4 different courses -  ranging from 26.2 miles to 3 miles, children are welcome to walk, and even individuals who can't be at the actual event can join as a "virtual walker."  In other words, all friends, family, and supporters in Boston, across the country, and around the world are invited to join us.  We would love to have 100+ walkers!)

We're all going to raise money to support the Dana Farber Cancer Institute.  And ready for this, we have an incredibly generous match.  Every dollar that is raised will be matched (up to $100,000)!  I am confident, therefore, that team Ari 2013 will raise $200,000.  This is a HUGE sum of money that will greatly impact the lives of kids like Ari fighting cancer.   

If you need a few other compelling reasons why you should join one of these two teams, here you go:

  • Team Ari is going to raise more money than any other team.  Be a part of the fun and share in the pride!
  • We're going to hold a big fun summer event at our house for all Team Ari members
  • Sarah Silverman is on the team.  I sh*t you not.  She's a virtual walker, but you never know, she may show up on race day. 
  • The Jimmy Fund Walk is on our baby Alison's 1st birthday.  Cake for everyone!!
  • You'll get a cool Team Ari bracelet.
  • Free snacks and stuff all along the route and t-shirts for all participants.
  • My son is counting on you.  He's still fighting Leukemia and will for another 14 months.  These funds are truly life saving. 
Thanks a million for being a member of our Team.  And thanks for signing up to walk/run.  Your support means the world to us.

Let me know if you have any questions.


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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