Cancer and our Family
Of the 4 people in this picture:
2 have been diagnosed with and treated for cancer (Mari and Joli)
1 has pre-cancerous cells and is having a double mastectomy (Grace)
and I am at a very high risk of developing it within the next few years

My sister Grace
It's two weeks until Grace's surgery, and I can't help but feel both sad and proud of her at the same time. For those of you who don't know Grace personally, you certainly know her through this blog. Other than Jorge and me, Grace has been the most stable and constant force in Joli's life. Joli is a free spirit because of Grace. She is creative because of Grace. She is aware of feelings, emotions, love, joy, pain, and sheer freedom because of Grace. Why? Because Grace models the purest form of love I have ever seen. No matter who you are, Grace is your friend. No matter who you are, Grace is your biggest cheerleader. No matter who you are, Grace loves you.

Grace and I didn't grow up the best of friends. In fact, my memories of Grace are of me being horribly mean to her. After every mean thing I would do as a little sister, Grace would leave me a note on my bed or go so far as to drive her 16-year old self to a card store and buy me a card that says, "I know you hate me. But, I'm your sister and I love you." I still have that card somewhere.

When I had Joli and went through a tough transition time, Grace received the brunt of my exhaustion. And, yet, she still loved me and Joli more than I could ever imagine. On days when I couldn't take another trip to the hospital, Grace would stay by Joli's bedside so that I could have a break. Aside from Jorge and me, Grace was the ONLY one who went to the hospital each and every time Joli did. In fact, when Joli had her surgery, Grace was the only one who thought to bring food to help us stay nourished during the 15 hour ordeal. And, she not only brought "food", she bought the most gourmet treats we could ever have imagined!

I would actually argue that Grace has, at times, spent more time with Joli than I have. Prior to this year, Grace brought Joli to weekly music lessons, weekends at the Children's Museum, and lots of explorations to places I never would have gone - a pet sanctuary, a blueberry farm. Grace is responsible for allowing the girls to color on the walls, get soaking wet in puddles in the middle of winter, and ruined their clothing in paint. And, while I probably said things like "How could let them do that!", I should have said, "Thank you for letting them be children."

So, this is in honor of Grace -- a long over due tribute to how much I love you, how much I appreciate you, and how little I often tell you. Grace, you are a strong, brave, beautiful woman, and we are praying for your successful operation and quick recovery. I admire everything you do, everything you have done, and everything you are destined to do. I am proud to call you my sister.


Grace on Joli's 2nd birthday - just before diagnosis. Yes, she is sitting in a swimming pool fully clothed.. a typical "grace move"Grace with food on the day of Joli's surgery, Aug 2005

Grace at Joli's first chemotherapy stay, Sept 2005
Grace with Joli on the Toys R Us ferris wheel in NYC. Grace often put her life on hold and selflessly came with me for a week each year - for 2 years - so that I wouldn't be alone.

Mother's Day, 2007 - while Grace isn't a mom, she is typically found surrounded by all the nieces and nephew. It's because of her love of children that we named Jada after Grace.

Jorge is sweet.....
So, I had to google myself (yes, narcissitic, I know, but really it's just good professional practice to see what people are saying on the web about you), to find this post written by a certain Jorge Vega:
Friday, October 5, 2007

Liza's Testing
So, some folks already know this about me and mine but we've had the house guest from hell set up residence in our family guest room. Cancer. It started with my mom's breast cancer years ago (leading to a lumpectomy), then my daughter's bout with retinoblastoma (leading to the removal of her right eye), my sister-in-law's double mastectomy last year and my other sister-in-law's mastectomy (scheduled in two weeks).Well, the hits keep on coming... my wife, seeing all that's gone on, decided to take a proactive approach and went in for genetic testing a few months ago. Not surprisingly, she tested positive for the BCRA1 gene. Statistically speaking this gives her a greater than 80% chance of developing breast cancer in the next few years. This afternoon she begins a battery of test that will continue for several weeks, to determine the presence of even minute cancerous cells in her body. It's the ultimate early warning attack. My sister-in-law, Grace, did the same thing months ago and it alerted her to the presence of the danger cells in her body, leading to her decision to have surgery.Liza is walking into this with her eyes wide open. Our fam's got a long history of laying the smack down on cancer and, by going through with the testing, she's basically ambushing the hell out of it (cancer will never see her coming). So, if it sounds like we're being kind of casual about it... we're not. These next few weeks are going to be hard on her. The tests are uncomfortable, downright painful, and the results may lead to difficult decisions.But here's the thing about my wife... she doesn't mess around.Cancer. Has. No. Chance.I love you, babe.
Labels: cancer, family
posted by Jorge Vega at 9:17 AM

Visit to the Oncologist

This time it was Joli's turn to go to the oncologist. She had not been seen by Dr. Grabowski since April 2006 (right when Jada was born), and I was thinking it was time to go and see him. He scheduled her MRI (last week) and the results were free and clear! It was interesting to go back to the oncologist with Joli -- I mean, she was still only 2 years old the last time she was there. It's so weird to think that way!

Joli, of course, remembered absolutely everything about the clinic. She ran into the waiting room and yelled, "MOM! It's my friends... Nemo and the Puffer Fish!!" Gosh, those were the only 2 things that helped her feel good when we went to clinic. Joli did great with Dr. Grabowski and he was amazed how much she has grown. She was having a fun time... until Dr. G said, "Okay, we have to draw blood." "GULP!" I said. Uh oh, the last time Joli had a blood draw in her arm, she was barely 2 years old and was restrained by 3 nurses -- that was a few days after her enucleation. What was going to happen now???

Well, Dr. G recommended that we put some Emla cream, but I had to get back to work and didn't have 30 minutes extra to just hang out and wait for the cream to take effect. So, I told Joli she just had to be brave and do it. Yikes.

Joli was a trooper, though! She did cry, and I watched the needle painfully wriggle around in her arm (poor thing!!). She was very upset WITH ME after it was done. Her exact words were, "Mommy!! I am SOO mad at you. You upset me. Even GOD is mad at you, MOM!" Great....

The good news is that Joli was the only patient in the waiting room when we left, and the music therapist was just coming in. So, rather than rush out in tears, and with Joli screaming about how much God is mad at me, I let her hang out with the music lady. Thankfully, she got her laughing and singing, and we left in good terms. Until... the elevator.... where Joli turned to me and said, "MOMMY. Just because I look happy does not mean that I am not upset at you. Oh, and God is upset at you, too." Nice.

Anyways, Dr. G wants to see Joli again in April because of my testing positive for BRCA1. There is a weak association between Rb and BRCA1, so he wants to see her whenever she sees Dr. Mukai.

By the end of the day, Joli said, "Mommy, I'm sorry I was so upset with you. God loves you Mom. God loves you."

Bless her little heart.

Joli's first day of chemo: September 20, 2005

Last day of chemo: February 14, 2006

MY KIDS DEFINE "SINGING IN THE TUB"
Jada's new favorite song is "No One". Notice her rock star facial expressions as she sings. She even blows kisses to her adoring fans! Joli is her interpretive dancer...

When Jada wants us to play it, she says, "Mooommmy. I want "No One" please."

Joli did great yesterday!

Joli did very well yesterday at her MRI. We left the house early and made it to radiology with plenty of time (I mention that because we are usually horribly late!). Joli was very relaxed and was very social with the nurses and doctors. Once again, Joli walked herself to the room and was very cooperative. She even put on her OWN mask (which, in the past, we had to restrain her to put it on) and inhaled dee-e-e-e-e-ply and fell asleep. Even at recovery, Joli kept trying to be independent and sit up (only to fall back down from the anesthesia still in effect). Overall, we were at the hospital for 7 hours. We have an appointment with her oncologist next week, and then we need to schedule a visit with the ocularist in December. Oh, joy.On a different note, here's a cute picture that Aunt Marie sent me of the gals. Too cute!

Joli's MRI today

It's 5:30am and we're getting ready to go the hospital soon. Joli has an MRI - her first since April 2006. Don't worry, she got plenty of Hannah Montana treats to make her happy before going to the hospital.

It'll be interesting to see how she reacts. She's now a year and a half older since the last time she went under anesthesia, but she's also "out of the routine" of the whole anesthesia experience, too. I know she remembers all of the details -- the smell of her mask, the order of tests blood pressure/heart/lungs/etc, putting on the operating room pajamas. But, it's been a while since we've actually had to do it.

I'll sure I'll have stories for you when we get back. Pray for Joli!

If there was any question..

If there was any question whether or not Jorge and Joli were related, here you go:






She was in her room and said, "MOOOMM! Don't look at me! I have a surprise for you!!" And, then she ran into the kitchen, put her hands on her hips and said, "Ohh, yeeeahh. I AM UNDERWEAR GIRL!!"

Yeah, apple doesn't fall far from that tree....

Happy Halloween!

Of course, we had a great fun time! The girls had THREE trick-or-treating events: 1) at Tufts on Saturday, 2) at Stonehill on Tuesday, and 3) in our neighborhood on Wednesday! Jada was a dragon, Joli was Tinkerbell, and Mia was Snow White.

Even Tita Elma dressed up! She was Nanny McPhee!
These are kids of coworkers! The girls loved hanging out with their new friends on the college campus!
Getting ready to go around the neighborhood!

From the day they were each born, I've been taking a picture of the girls every single month with the same Tigger and Grover dolls. I haven't posted them in a while, so here are the latest. Joli is 51 months and Jada is 18 months! Enjoy!

Joli at 18 months (Jada's current age), January 2005
Jada at 6 months (taken 1 year ago today) ... gosh, that baby was white!


Joli at 51 months, taken October 2007Jada at 18 months, October 2007
Joli (51 months) and Jada (18 months) with matching PJ's

Jada is home from her exam under anesthesia (EUA)

Jada did awesome at her exam today. We woke up at 5:00am and were at the hospital by 6:45am. Unfortunately we weren't seen until almost 9:30am (imagine, a waiting room packed with kids who are starving and parents who haven't had coffee yet.... not a pretty sight). Even more unfortunate, I think that the doctor was running late because the family before us got some bad news. Usually, if the exam takes long, it's not a good thing. And, it turned out to be just that. So, our thoughts and prayers go out to that family.

We also met another Rb family who lives in Ecuador. They come to Boston to get treatment. Yes, Ecuador. The little boy was diagnosed in Ecuador, flies here almost every 3 months for treatment by Dr. Mukai. The family barely speaks English and they are staying at a charity house (see, your donation dollars DO really help!). They have no family here, and they had to leave 2 of their other children behind. Their appointment was after ours, so I hope they are receiving some good news.

We are reminded how Blessed we are to live in this area and to have support from family, friends, and the best medical community. It's always a very humbling experience when we go to the hospital. Sometimes we are the "worst" story in the room - most times we are not.

Jada did really well, despite not having eaten in over 17 hours. She came out of anesthesia like a pro! Basically sat up, drank some apple juice, and got into her stroller while waving to the nursing staff. So, we're home and she's sleeping off the remainder of the anesthesia.

Just before she fell asleep, she talked to Tita Mari and Gavin. Here is a cute video of Jada talking to Tita Mari.

We are back from CA! Joli is awesome!
I hear that Jada and Jorge had a great time this weekend at home! But, Joli and I had the camera, so here are our nice pictures from California at Nicole and Joe's wedding. It was so fun going with Joli at this age because she is really independent.... no strollers, no gigantic bags of diapers and snacks, etc. Although we missed Jada and Jorge terribly, it was nice to have some girl time! Enjoy!

Miss Joli in her fancy dress (that she picked out herself!)

Getting her nails done with Tita Mari

Miss Joli getting her first pedicure


Joli with her champagne glass of apple cider with a raspberry

Tearing up the dance floor with Lolo Sonny and Lola.... Joli danced all afternoon!
Not only were there TWO types of wedding cakes, but there was also a chocolate dipped strawberry station!! Oh, and Joli made that necklace for the wedding...!
Miss Fancy girl picked out her outfit (thanks to Target) of this adorable black dress and super sparkly silver shoes.


This is Joli's version of "The Robot" - she rocked it!!


A little hard to see, but this is Joli and Gavin dancing at the wedding

Joli got her FIRST MANICURE AND PEDICURE....

For the record, my first manicure/pedicure was when I was getting married at age 25.....

Joli enjoyed a luxurious manicure and pedicure, complete with the fancy flowers NOT just on her toes but also on her thumbs.

Liza's Test Have Been Fine
Thanks to everyone who has been supportive with all the tests I have to go through. So far so good - no cancer cells anywhere. So, it's been good to start building my chart and meeting the doctors.
We still have 2 Jada appointments next week and then 2 Joli appointments the following weeks.

Pictures from California to follow!

Just some weekend fun!


Uncle Lons and Tita Grace brought Joli and Gavie to this animal sanctuary. I'm told that Joli LOVED this cat.

Typical morning at Lola's House -- Jada, Jo and Gavie watching some Sesame Street! (Mia is M.I.A. in this picture ... oh, so clever!)

A year ago this month....

Joli had her port-a-cath removed. It seemed like forever ago when she had that port. Even in this picture, she look so small! We waited a full 8 months until after she finished chemotherapy to have her button removed in the event that she needed any additional treatment. I think, at last count, Joli's port had been accessed over 150 times over 14 months -- between chemotherapy, flushing the tubes, blood draws, anesthesia, etc. We went through boxes of band-aids, tubes of .. gosh... I think I actually forgot the name of the "numbing cream." It's amazing how easily I used to be able to rattle off the names of each and every single medication and now, I can barely remember the name of a cream we used over a hundred times.... oh, gosh, seriously, I actually can't remember the name.... weird.

Finish 1 appointment ... get 2 more

So, I promised I would write about this flurry of appointments that I now have as a pre-cancer patient. The MRI experience was fine, thanks to my sister Mari who refused to just let me sulk. She took the ride into Boston with me, hung out and made me laugh in the waiting room, ate some awesome Vietnamese food, and then we went to see Grace read at Grub Street. The only thing that was hard was the actual dye they injected into me that made me want to barf.

Soon after the MRI, I had to then see another doctor in Boston. Because I was there a little early, I decided to stop down to see Joli's oncologist and ask if she needed any follow up appointments. "Yes, in fact, she's scheduled for an MRI on a Wednesday and then needs to come back to the oncologist the following Tuesday! I was going to call you today! " Great. I scribbled those into my appointment book.

I then went to my appointment with the gynecological oncologist. I have to admit, in all these doctors appointments, I actually didn't even know what kind of doctor I was going to until I got there. So, after an insanely long wait, a physically uncomfortable exam, more vials of blood drawn, I went to the counter to check out. And, yes, I was scheduled for 2 more appointments and scribbled those into my appointment book.

I left the parking garage crying and thinking, "These doctor's appointments are like a full time job!" Driving out of the garage also brought up feelings of having to bring Joli there so often - and then knowing I have to bring Jada there in 2 weeks for an EUA, and then bring Joli there TWICE in 1 week in November.

For me, I know this whole flurry of appointments means that a) I may never have to have chemotherapy if we catch the cancer early, and b) that it will only happen every 6 months like this. The good news is that the doctor seems to think my risk of ovarian cancer is not 30% as a BRCA1 person, but more like 15% because of a few key factors: 1) I had children before 35, 2) I breastfed both kids, 3) I only ovulate a few times a year. My risk of breast cancer is still at about 80%.

The other good news is that I'm reading an awesome book called "Free Food for Millionaires" which has kept me very occupied in those waiting rooms. I highly recommend it!

So, more blogging after my next appointments. Like Mari says "It's better than chemo."Oh, and I'll post pics of the kids with Gavie soon, too.

Joli News:
Joli started her new school this week and LOVES it! I can't get her to leave in the afternoon because she just loves her new friends, her new fun, and her new teachers! (and so do I!). I'll take some pictures later of her at her new school!

LOTS OF FUN WITH COUSINS
We're having so much fun with Cousin Gavin visiting us on the east coast! We went to the Harvest Fair, rode ponies, danced, and played outside.

Stay tuned for more adventures!

My MRI is today
Inspired by Grace, I'm also posting on Breast Cancer Awareness month. Not sure if I posted (to those reading the non-Joli-and-Jada posts), I was tested for BRCA1 (breast cancer gene) in August and was positive. That means, I have an 80% chance of developing breast cancer. And, since many of my female cousins, aunts, and even my sisters were either cancer or pre-cancer survivors, I'm no fool to my odds.

Today starts the massive amounts of tests. I'll pretty much be in Boston every single week for the next month or so, between my own tests, Jada's EUA's, etc. Fantastic....

I'm not nervous about being BRCA1 positive. I figure, you deal with the cards you have - and our family has been good about that (by no choice of our own, of course). So, now begins my journey of building a chart with the Boston hospitals and, hopefully, catching any cancer cells before they truly turn into something bad. As a BRCA1 positive person, I also have a much higher risk for Ovarian cancer, too. So, I'll be monitored for that as well.

I guess I'm a little nervous today because this test is what found Grace's pre-cancer cells (I know there is a more scientific name for this, but "pre-cancer" works for me). Grace emerged from the next 2 tests with massive bruising and a lot of pain - two things I am NOT a fan of in my life. So, not nervous about the tests, but nervous about what they could find. Grace has decided to have a double mastectomy in a few weeks. I'm not quite there yet. But, who knows what the tests will determine for me.

Now that I'm "out", I'm sure I'll be writing more about this... in between stories of the girls pooping the tub -- which happened yesterday (thanks, Jada!) -- and going to school!!

Peace.

Jada Speaks

Kind of out of nowhere, Jada just started speaking in sentences. It's kind of weird. Here are the sentences she says:
"Mommy, I want some milk."
"Where is my Lolo?"
"Elmo go car seat, Mommy."
"That is Vega."
"There is Joli/Mommy/Daddy/Elma/Gordon/ Lolo/ Lola/car/Elmo."
"Gordon, down!"
"Mommy, night night."
"I want apple, please."
"Bye, Jo. Bye, Jo."
"Where's Daddy? Daddy at work."
"Jo is there."
"Jada, sit down."
"Gordon, no no."
"I want that."

Hmmm... I think there are more. It's so odd... just all of a sudden speaking in sentences! Yay, Jada!

HAPPY BIRTHDAY LOLO!

Happy birthday, from your favorite granddaughters! We love you, Lolo!

To NY and Back!

We went to NY and back in 24 hours to see Jorge's family and to visit our friends on Long Island. It was so much fun being back there and bringing the girls. Cotton candy and french fries - doesn't get better than that.

The girls had a great morning with Grammy, Pops and Uncle Pedro.

We then went to Long Island and met up with Olivia and Gen (and their mom). It was a spiritual connection from the minute the 4 girls met each other. Olivia, of course, is the creator of the beautiful quilts that she gave the girls over the years.

Jada finally got to meet Tracey - one of Jorge's mentors from high school and both of our good friend. Tracey brought Joli and Jada around to all the little animals and bought the girls hot dogs!

Oops... just tried to upload the pictures from Gen, but because i stole them from her facebook, they didn't come out right. So, I'll post those once I get them from her (ahem ahem, Gen....).

Thanks for hanging out with us everyone! Off to bed....

Some Fall Fun!
Just hanging around and enjoying the warm fall so far! We went apple picking and the girls had such a great time. Jada enjoys bossing everyone around and saying, "Apple. I want apple." I also caught Jada the other day with one of the baby dolls and she kept saying, "Baby? Want apple? Want apple baby?" Too cute!

Jorge and Joli getting their apple picking stance ready


Joli getting ready for another week at school


Jada checking out the animals

This was hilarious......


Okay, so it COULD be that the photo of Jorge is a funny one.. but, after all, I'm the one writing the blog so I get to spin it my way, no???




C'Mon... JADA ONLY LOOKS 6% LIKE ME??

JADA SPEAKS!

Once again, getting a demand from the family about not updating people on Jada's coolness, too. So, here you go!

Jada basically babbles and babbles and bosses people around all day.

Some of the things she loves to say:
"Mommy"
"Daddy"
"Go!" (to Gordon)
"I want apple/milk/that."
"Ay, nako!"
"Elma"
"Cheese!" (in front of the camera)
"Hiii!"
"Musky" (aka her nickname: Muskrat)
"Elmo"
"Hide! Hide!"
"bye, bye!"
"Apple"
"Banana"
"Lolo!" (as of today!)


WORDS SHE UNDERSTANDS:
"Jada, get that"
"No, Jada!"
"Get your shoes"
"Where's Ate Joli/Ate Mia"
"Go to the car"
"Where are your eyes/ears/hair/nose/mouth"

This is Jada's remix version of A-B-C and the Barney Song... ENJOY!

Happy birthday to Tita Mari - she's a whopping 36 years old!

***uh, oh... THANKS TO PAULIE FOR POINTING OUT THAT Mari isn't a "whopping 36-years old" but rather an overwhelming "38 years old..." My gosh....*****




Happy Birthday Tita Mari!!

FIRST DAY OF SCHOOL!


Joli had her first day of school today - complete with bright green and purple backpack! She did a great job playing on the computers and listening to her teachers. The letter of the day was letter "M" and Joli brought home some neat artwork that we'll proudly display in her room! Watch out, pre-schoo1 -- here comes Joli!



Classic "first day of school" picture pose




Miss Jada had fun while Jo was at school - check out her finely manicured nails...

Joli at 49 months (August 2007)

Late night out!! (okay.. more like "8:30pm"...)

Thanks to Elma, all the couples were able to go out to a wedding -- sans children -- the other night. So, this entry is dedicated to the grown ups! Jon and Jenny scooted out early, so we didn't get any pics of them, and of course Mari and JP are in the West Siiiide.

Super rare photo of BOTH Jorge and me!



Just as rare a photo of Grace and Alonso (usually the one taking the pictures!)




Our good friends Ligaya (known her for 26 years) and Chuck



Kirsten and Paul - no kids, so they stayed at the party later -- 9:30pm....

A night out!