Wednesday, April 6, 2011

Dana Farber Trip

4/3 Sunday -G left Guardian's of Ga'Hoole book 2 on the plane & started "the Last Song" -all is going to h*ll now that she's started reading that. LOL

People we met:
-Phil (Day-night Manager) -AWESOME guy!
-Carol (& Greg -we met Monday -did part of a puzzle with him) -teacher from Washington State. here since December
-Bessy -triple play (Fibromyalgia, Radiation for breast cancer, Menopause) -rode with her Monday to Dana Farber & hung out a little here & there. WHAT a fun lady!

-The Seafood Cafè on Centre Street off South Huntington Stree in Jamaica Plains, MA is AWESOME! (We go here again Tuesday night)!

4/4 Monday -long day, but AWESOME bigger picture!

People we met:
-Suzanne (& Peter -across the hall), Rochester, NY -bone marrow transplant & kidney -same time. 3 weeks left here at Hope Lodge, started 1-2011
-Patty -front desk, very helpful
-Ian -shuttle

-Sobreida -registered us @ Dana Farber -Health Proxy form -WAY cool lady

-Julia -clinical research study coordinator -signed release for Dr. Soiffer's study & to put sample in bank for future research (learned later that the JAK1/2 mutation correlation to MyeloFibrosis came from using banked cells to study)

-Bar coded Gail's Dana Farber card

-Jean -phlebotomist -"good stick" -no more left elbow inside joint for drawing bloods -use left forearm instead.

-Ate, called & spoke to DH -Yaffa went to mani-pedi with Nana Linda, Cloe & Erin (she ended up getting red, black & gold nails for WXVG VIPER & blue & green toes for Mommy & Daddy)

-Christine -vitals -cool neon green sticker nail overlays

-Dr. Andrew Aguirre =Fellow & colleague of Dr. Steensma -took a great blood & medical history, examined for lymph lumps, ankles, listened to heart, breathing, a few checks for spleen enlargements & we did a little Q & A session, then he went to consult with Dr. Steensma

-Coach Rachel texted us around this time to see how Gail was doing. How cool!

-Dr. Steensma and Dr. Aguirre discussion about Gail not having PMF, but ET with reticular -scarring/fibrosis, which 15 -20 % of ET patients have, but it often presents as PMF. Diagnosis was made due to Gail NOT having an englarged spleen, no rapid weight loss, no chronic night sweats/fever above 100 F, no anemia...

-Hung out with Ricara for awhile, just chit-chatting. So cool. Gail had an Atavan, then we went back to the bone marrow biopsy...

-Gail did AWESOME during her procedure. It was painful, but she toughed it out...preliminary results tomorrow.

Prognosis for ET + fibrosis (reticular scarring):
-@10 years, 5% of patients morph to Leukemia
-@ 20 years, 10 -15% of patients
-possibility of morphing to MF is +1 -2% per year
-baby aspirin
-HYD, probably not daily -as Dr. Simpson said, probably 1 every2 or 3 days to control platelets rising too high above normal, but a little high would be better than too low
-bloods once/month to monitor

-Dr.  Steensma & Dr. Aguirre gave me a recent article (I think I read this already online in February -was so funny) titled, "How I Treat Essential Thrombocythemia" by Tony Green in Cambridge. I'll read it again anyhow in the hard copy they gave me.

-Back to chiropractic adjustments if Gail wants, as long as platelet counts are steady & not too low.

-Discussed "The Sword of Damocles Sydrome"

-Cab back to Hope Lodge -was too late for shuttle -runs had ended already

-Went up to room to chit-chat, text message many family, call a couple of people, too. Then just sat a few minutes to soak in the change from a 5-year average life span to full lifespan possibilities ::knock wood::

-Talking with Bubbe Levine while Gail fell asleep for a catnap was even more inspiring than usual. Tx Bubbe.

-Got an "all call" for soup dins with bread & brownies for dessert, then did a little puzzling with Greg.

-Soup was good. Cinnamon bread, too! Gail LOVED the brownies!

-Got Gail settled to rest -probably sleep for the night -& got online for a few minutes to type this, do some music coursework, FB a little and correspond a bit with Dr. Steensma about a few other questions. Also ordered Gail a new plate for her medic alert bracelet (which was engraved today & should be shipped tomorrow).

4/5 Tuesday -a more relaxing day...
We went out for a big breakfast down the street, then headed on the Green Line "E" to The Prudential Center Mall. We got a replacement for Ga'Hoole #2. We bought Cayleigh a cool shirt with a Lobster in a pot saying, "Man, is it hot in here?" that has 2 other lobsters out of the pot telling the in-pot 1 to mellow. We also got her a red, black & gold lobster magnet. The claws, antennae & legs move, too. Grooveh! We walked around the Mall a bit, then scooted out to rest a bit before heading out for sushi!

4/6 -Up at 2:30 -couldn't sleep anymore with the travel date, the great news, etc. Flight was good, though Gail wasn't overly comfi. Went to eat some salad at pizza place. Picked up Yaffa at Uncle Dude's. She had a BLAST -zoo, aquarium,... When Uncle Dude signs up for something -he doesn't play around! :D

Got home, we all napped, I did what I think was the rest of my music coursework for the week -will recheck tomorrow, then ate.

Dr. Steensma, of course, wrote me back quickly -he IS that AWESOME -about Gail's future, chiropractics, etc.

Gail & I caught up on a little TV & she's asleep right now.

Thank you to everyone who prayed, offered support, supported, etc. The future is unclear and the road has more bumps than if we weren't in this realm of Myeloproliferative disorders, but it is a better day than it was just 2 days ago!

I'll keep you all posted on the full report on Gail's bone marrow biopsy when we get them in 2 -3 weeks. Also checking on MPL gene mutation -which is a newer link to some of these diseases that is being researched and explored.

L8r daze,
spouse of Gail from Queens, NY, but migrated to Metro Atlanta, GA
PMF diagnosed 2-1-2011 (Primary MyeloFibrosis) :<ET diagnosed 4-4-2011 (Essential Thrombocythemia)
"There's nothing better than being the daddy of a daddy's girl"
"Rise from the ashes a blaze of Everyday Glory" -RUSH

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...

Friday, February 25, 2011

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. 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!

Thursday, February 24, 2011

2-24-2011 Shingles?


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.

Saturday, February 19, 2011


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!

Tuesday, February 15, 2011

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!