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.
-PoppaMike,
PROUD Cheer Team Dad of National Champion Small Gym TINYs Team 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...

Shingles -part deux

Greets All,

After a debate with herself, Gail went to work today & by the day's end was just feeling  horrible. She came home & went to bed for a bit. Her shingles themselves have not spread more nor have they procced any open wounds, but she has a lot of muscle pain due to the shingle virus. I thought we caught it early enough, but probably not. Hopefully, her antibiotic will kick in fast!

We got her medical alert bracelet in the mail today. FAST delivery & it is exactly what we ordered. www.stickyj.com is a good company. Cayleigh has the spare bracelet without the engraved info on right now. Too cute.

We chatted yesterday about what & when we'll Cayleigh about our Dana Farber trip. We figure after our last cheer competition, which still gives her a solid week or so before-hand to understand that Mommy's blood is bothering her and we're going on a lil' trip to figure out what to do.

After canceling plans we made with Penny, Charee-Charèè & Samara, I ended up running out with Cayleigh while Gail slept to pick up Chinese for dins at our no MSG favorite place. Gail ate, took her meds & is in bed for the night. I think I'm almost as tired, though I wish I could deal with her pain for her. Hate not being able to do more for her.

I'm looking to make her a t-shirt. Our gym's owner & good friend, Mindi, told Gail that "she's a VIPER. She can handle it." So, I got permission to use the VIPER logo from the gym & am trying to find a company that'll make 1 shirt for under $25. Wish the new printers worked like the old ones. I used to make t-shirts all the time with ink-jet iron-on transparency paper. The new stuff doesn't work. :| Any1 know anybody that would make 1 with a logo & 1 line of text on a decent white t-shirt without charging me more than dinner for 3?

Anyhow -just remembered that tomorrow is my 42nd b-date. Am glad to be here, but just doesn't seem like a focus for me this year.

Thanks for all your prayers & support all. It's REALLY appreciated!

2-24-2011 Shingles?

HAPPY BIRTHDATE DAD!...

I hope all's going well with all of you! We booked flights to Logan Airport in Boston for our trip to Dana farber and are staying at The Hope Lodge. We're trying to figure out departure time for the trip back. Not sure what test & consultation conferences etds are yet?

Gail was put on a ZPAC to prevent Strep when Cayleigh came home with it early last week. She ended up having to go off the ZPAC & was put on a Medrol dose pack. She probably has some shingles as a result and we're headed to Dr. Simpson tomorrow, then if needed, to our dermatologist. (None have rings, breaks or are oozing).

Yesterday, Gail said she had some upper abdominal discomfort, especially when she took deep breaths. I've been checking to see if there's any puffy areas near the top of her ribs on her left side, comparing to her right side. She said she feels better today. Dr. Simpson said to watch her carefully & if I think she "looks bad" that we should go to the E/R for a blood workup. Luckily, no need ::knock wood::

I'm worried the shingles will cause more issues or the treatment for shingles will cause more issues.

We both took the day off to go to Gail's with Dr. Simpson to figure out what to do about the shingles (we're pretty sure that's what she has at this point).

I took a few days off from researching, except for the shingles issue.

We're also still discussing what to tell Cayleigh as time begins to wind down to our trip. neither of us likes keeping her in the dark, but at the same time, she doesn't need the extra worry at 6 years old. Most likely, we'll fill her in, in a generally way, right after her big cheer competition at the end of March by saying that Mommy's blood has something not quite right & that we're going to find out how to work with the problem.

Bonnie has been an AWESOME friend and info from her is ALWAYS awesome! I plan to get her a Wonder Woman t-shirt. Or possible get her dog, Max, a Wonder Dog wrap. He's been great on their MDAnderson trip, too. We look forward to meeting Max and seeing Bonnie & Joe again.

2pm: Dr. Simpson, already high in our book, rose a bit higher today. gail OES have shingles & he prescribed Valtrex. His 1st question was if our daughter has had the Chicken Pox immunization. 2nd was for me, but I truly don't count as much as Cayleigh anyhow. :> He also answered on 2 or 3 other questions we had & all is well. Gail's platelets were back over 500, but he said this is due to the shingles' effect on the body & they should get back down in a few days.

APPLE's NUMBERS is THE MOST AWESOME BLOODWORK TRACKER!

Gail is getting her birthdate massage & manicure/pedicure! Cayleigh just woke from a nap -she did a lot of work this morning on her weather project. Gail has some VERY minor side effects, such as some muscle/skin soreness to the touch & a couple of little itty-bitty red dots, but this is most likely due to the combination of ZPAC & HYDROXYUREA. She started a MEDROL pack yesterday & the symptoms are better. She also stopped the ZPAC -it wa preventative anyhow due to Cayleigh coming home with Strep mid-week.

I downloaded the 30-day trial of APPLE'S NUMBERS spreadsheet program and it has become the solution to the dreaded multi-category chart/graph issue that EXCEL creates with regard to creating different row graphs with different conditions per row!
I'd like to thank Victor & Stephanie at APPLE for giving me the info on the trial.

I had downloaded a little app called iBloodwork, but it wasn't useful for more than 3 categories. Most of the other bloodtracking/bloodwork programs are for blood sugar/Diabetes, so they weren't helpful.

It took me about :30 to set up the mins/maxes and set up the info./graphs for White Blood Count, Red Blood Count, Platelets, HemoGlobin and HematoCrit. SO easy to use.

Happy Birthdate Joe!

Platelet's Goin' Down! :>

Greets All!

Gail's platelets down to 467 from 702 two weeks ago!

Dr. Simpson answered almost all of my questions, too! He was funny =asked how we knew Dr. Steensma & if we were personal friends. I said, "We are now!" LOL & filled him in on how much we've been in contact. He said that Dr. Steensma called him, too & he was under the impression that we had already been friends. LOL

Retest on 3/1 -to see if counts come down to normal. Definitely another bone marrow test when we're in Boston.

Woot! Get 'em Gail!

Possible Minor Side Effects Begin 2-13-2011

2-13-2011: On Thursday, 2-3, Gail began Hydroxyurea (light chemo) to help
lower platelet counts to support spleen and blood.


Possible side effect began today, 2-13, with Gail saying her skin “hurts”.
There are no marks, sores or bleeding. She also says her muscles are sore
a bit. Both these symptoms could be unrelated and just part of turning 40
the day before. ;).


Tuesday, we go to our local hematologist for our 2-week since diagnosed
PMF (Primary MyeloFibrosis) follow-up. Wish us luck!






2-12-2011: Happy 40th Gail!!!! You still look 20 to me. Cayleigh went to
lunch with Aunt Ceri today while we scooted to...


We went to lunch with Bonnie & Joe. WHAT a cool pair of people! Both gave
us some great information and were QUITE supportive. It's funny that we
are quite parellel with our personalities and our marriages, etc. We are
keeping you in our thoughts and prayers as you trek to treatment!


Afterwards, we went to watch Owen earn his Yellow Belt at a mixed martial
arts dojo! later, we went to Japanese with Joy (1 of Gail's "sisters") and
Gary, her cool hubby. I'm just glad Gail had a great day!