Tuesday, March 29, 2011

Woot -No Meds Week 3!

Gail’s platelets are still within normal range 214! WOOT!!!!

No meds for a 3rd week!

When we get back,she may go back on HYD, but at a lower dose, maybe 1 every 3 days.

Dr. Simpson thinks that the ocular migraines were probably connected to this all along due to Gail not having 1 since going on HYD.

Gail’s fatigue was discussed, though it has been a bit better the last few days  -even with our busy traveling-cheer weekend!

Dana Farber coming up. Though we wished there was no need to travel for this, we know Yaffa will be in AWESOME hands @ Uncle Dude & Aunt Ceri's, and we'll get to see June-ko, who we haven't seen in at least 4 years!

We'll also get to meet Dr. Steensma and possibly Ricara, his patient coordinator. Both hold special places in our hearts for making this part of our endeavor as easy as it could be. Last week, before our trip for Battle at the Beach, I asked Dr. Steensma a question via email. I had a response 1 minute later. Amazing!

Thanks for all the support, all.
PROUD Cheer Team Dad of National Champion Small Gym TINYs Team 2011!!!!

Sunday, March 20, 2011

3 Big Weekends!

This past Tuesday's bloods had mixed results. I had created a blog entry, but there was an upload error & time is very short, so couldn't redo.

Bloodwork-wise, Gail's platelets were within normal range for the 1st time in, I think, over a year! The only issue is that they came down WAY too fast from where they were, so Gail was taken off Hydroxyurea until this-coming Tuesday's recheck. I'm hoping the meds did their trick & Gail will be still within normal. We know that if they drop too far, as is the case with PMF, then we're in a more dangerous situation/progression. Gail's appetite has returned a bit, too, which could be a result of finishing with Shingles &/or being off Hydroxyurea, which has us both MUCH happier.

Gail's car has slowly been having minor issues, mostly electrical, so we started shopping around a bit for a new 1. I decided  when we still were in NY that Gail would have a new car every 3 -5 years due to a major issue with her 1st car, so we're at year 4. We were taken by the Kia Optima (no longer a low quality, eye-sore), but ended up with her usual -Hyundai Sonata LX, but for a change, it's red (they had already sold out of all others LOL. She's getting used to it by driving us to sushi last night and Cayleigh to religious school this morning. I'm picking Cayleigh up & heading to cheer & am hoping Gail goes home to rest a little or do some of the things she needs to do. She's pretty stressed. Go fig, right?

I also told Gail a few weeks ago that she'd be having a massage (we found an inexpensive/well-reviewed place near religious school) every month. She & I "argued" about who should get the massage & I told her she could rub my neck-shoulders 5 mins per day after school & I'm fine. It's funny how she seems more worried about me than herself, but I'm not surprised. So far, she's been keeping her promise & even tried to get me to go as of Friday, but she's going today. Whew!

Next weekend is our BIG cheer competition! Our TINYs Team is going against at least 12 other teams, so a Friday pm practice was added the last 2 weeks & the girls are ROCKING! We're going to explain to Cayleigh about our Dana Farber trip & her sleepover at Uncle Dude & Aunt Ceri's after the competition. She's excited about her sleepover, but we're going to let her know that Mommy's blood is not acting right, so we're going to see a special doctor in Boston while she's away to see what else we can do. From there, we'll field questions. We stopped bringing Cayleigh to hematology visits, even though she thinks it's pretty interesting watching Mommy's blood being drawn. Gail noticed that Cayleigh seems more stressed afterwards, so hopefully her not attending will help. So far, so good, ::knock wood::

The weekend after that is Dana Farber trip. My friend June-ko may drive to Boston to visit her sister that weekend, pick us up at the airport, go out to dins with us & then drive back to NYC. it's been about 5 years since we saw each other -Cayleigh was just a toddler. Hopefully, we can get June to come down to see Cayleigh, too (I know you're reading this blog June-ko -hint-hint, nudge-nudge, wink-wink. LOL). I'm not surprised June offered (she's WAY cooler than most people think :D) though I still think it's too late for her to drive home from Boston & get to work the next morning.

I realized that this morning is the only real down-time Im going to have (about 2 hours) until we get back from Dana Farber! OMG! Between school, cheer, other events we have in our lives, etc, we're going non-stop. When we get back, we plan to take a day or 2 to just hang out & maybe run an errand or 2. Some minor spring cleaning, then head to the Aquarium to see the new dolphin exhibit, hopefully with Coach Rachel, who offered to keep Cayleigh while we were away, too. The generosity & our list of friends/family we'd actually thought about lending Cayleigh to, amazes us. We know how lucky we are with friends/family like this. It's very heartwarming.

Gail loves wearing the shirt I got her (thanks Mindi for the permission to use WXVG logo) that says, "I'M A VIPER! I CAN HANDLE IT!"). It's become a saying of ours now, too. :D

For those of you who know the "Cayleigh's naming ceremony Frank!" story, I should be getting my "Go Frank!" t-shirt in the mail in a day or 2, just in time for competition! I canNOT wait!

I fig'd I should put up a pic, so here goes...