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.
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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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