Just Back from Camp!

We had a wonderful opportunity to go back to Camp Sunshine this weekend. Those folks are amazing- they somehow crammed 6 days worth of Camp Sunshine into 1 1/2 days! The girls, of course, had a blast, and I got some good talking time with other cancer moms.

Joli and Jada rocking their Camp Sunshine gear!
Joli and her best friend, Julia! Julia is also an Rb survivor and they have bonded over their "special eyes" and their "purple glasses."

The girls on their top bunk! (no, they weren't allowed to sleep up there..)
Me and my favorite girls in the whole world! (And, baby, of course!)


Okay, so super cool part -- Joli is typically pretty shy. But, this time at Camp, she decided she wanted to be in the talent show. I kept putting her off from signing up because I was quite sure she would whisper "Mommy, I'm too shy." Well, she insisted on dancing, getting into her ballet outfit, and then dancing to "Bet On It"-- one of the most obscure songs ever.

Cut to the chase- JOLI WAS AMAZING!! They called her name, "Now, it's time for a dance routine by Joli Vega!", she whispered, "Mommy, I'm nervous.", but hopped up on stage and waited for her music. There was actually a technical difficulty, and the music didn't start for about 30 seconds-- but Joli just stood there gracefully and then ROCKED THE HOUSE!!

GO, JOLI!!! :)

Mari, Grace and me on a FORCE Brochure - an organization for people who been diagnosed as BRCA +.


God gave me a little reminder....

To count each day as a Blessing.

As many who at least read this blog know, the women in the family so far have tested for BRCA 1+. That means, we have (or, in Mari and almost Grace's case, DID) an 87% chance of developing breast cancer, and a 60% chance of developing ovarian.

So, I found a lump.

Well, to clarify, my OB found a lump when I went on Wednesday. He immediately had me schedule an appointment at MGH (where I was already being screened). So, today, Friday, I went in for my visit to the oncologist nurse, an ultrasound (no MRI because I'm pregnant) and a needle biopsy.

The first few were fine -- in fact the needle biopsy (which they took 2 samples) were fine. But, afterwards, it felt as if fire ants were wrecking havoc in my body. Ouch! An icepack and some coffee from my favorite coffee place later, I feel better.

And, the biopsy results are negative. No cancer. They think that it was an inflamed group of fat/milk cells since I had finished breastfeeding only about a year ago. Because my body is so used to being pregnant, my stomach, uterus, breasts and entire body is moving at a faster pregnancy rate because it's been familiar. They still want me to come back in 2 months to check out the site again.

Just when you get comfortable, God sometimes gives you a reminder that life is precious.

Thanks for your prayers everyone!

Sorry it's been a while, folks! It's been busy in our house!

Jorge has finally gone to print with his next 2 comics!
Liza is still feeling pukey, even though we are well into the 2nd trimester

Check out the gigantic apple Joli picked last weekend! She ate the WHOLE thing before we even made it home!



Here is Joli getting inked for the first time! No worries - it's airbrushed. Although, Joli did say, "Mommy! I want to get the tattoo, but I don't want the needles."

And, Jada. Super Jada with her trusty side kick, Cotton Candy.
The TaluVegaLacan cousins (Mia had not arrived yet) at the Greek Festival!


It's been busy with Joli going to school full time, Liza working full time, Jorge working 2 full times (day job and comic job), and Jada being full time... wacky. Baby #3 is also making me nauseous, full time.

Jada, my apologies if this website is still up and running when you hit grade school, high school, meet your first love, and/or go for your first job interview. But, honey, this one was TOO GOOD not to post! So, for all you followers out there, enjoy this before Jada is saavy enough to log in and remove it from this blog!

Introducing... "Jada Montana!"


The TaluMattheLacanVega cousins. Joli was giving the directions, "Now, everyone look cute!"



Cute Story

So, in line with the "interesting questions of Joli", here is the latest from the car ride home today:

Joli: Mom, what will happen if you die?
Liza: Well, I'll go to Heaven.
Joli: But, will Daddy be all alone?
Liza: No, he'll have you and Jada and the new baby.
Joli: But, what happens if I die with you? Will Daddy be alone?
Liza: No, he'll have Jada and the new baby. And, you and I will be in Heaven.
Joli: But, what if Jada dies with you and me? Will Daddy be alone?
Liza: No, he'll have the new baby.
Joli: But, what if the new baby dies with all of us. Will Daddy be alone?
Liza: I guess he will. But he will have all of our other family with him.
Joli: But, who will Daddy love?
Liza: Joli, Dad will still love us even if we die. And, we'll love Daddy.

Pause....

Liza: Joli? Are you worried about Daddy being alone?
Joli: Yes.

Pause...

Joli: Mom, do you think Daddy will find a different person to love if we die?
Liza: Well, I hope so. I hope that if we are all in Heaven that Daddy finds someone he loves and who loves him as much as we do.
Joli: But, what if Daddy doesn't find someone that he loves?
Liza: Well, that's okay, too. But, I hope that if it makes Daddy happy for him to have someone to love, then I hope he finds someone to love.

pause..

Liza: So, I'm going to say this but you might not remember this... if Mommy should happen to die before Daddy, I do want Daddy to find love.

Joli: Mom. I don't think Daddy will ever find someone that he loves as much as he loves you.

Oh Jada....

Nighttime conversations

Blogging this for posterity's sake

Here are samples of conversations that Joli and I have while winding down for bedtime:

What's in Heaven
"Mommy, why does your body melt when it gets burned?"

"What do you mean, Joli? Have you met someone like that?" (note: we just had a young girl over for dinner who had been badly burned and was here in the US getting surgery)

"Gordon. Gordon died and then got burned."

"No, Joli. That was called cremation." (relieved that I didn't need to go into the story of the young girl)

"But why didn't it hurt him?"

"Because, when you die, your love and your spirit goes with God to Heaven. It's just your body that is here and your body doesn't feel anything anymore. So, when we visited Gordon when he was dead, his love was already with God. When we cremated Gordon, he didn't feel anything."

"I don't get it."

"I know. Don't worry."

"So, where did Gordon's love go?"

"Gordon's love went to Heaven."

"Where is Heaven?"

"Where do you want Heaven to be?"

"I think Heaven is far."

"Yes, Heaven is far."

"So, when we pray for angels to watch over us, how can they see us if Heaven is so far?"

"Because God gave them special eyes to watch over us and protect us."

"What?? Special eyes???? They have special eyes, too!!"

"No, not exactly. I mean, they have special eyes to watch over us and protect us."

"But, then why do they have wings?"

"Well, some people believe they have wings because they have to fly in Heaven."

"So, does Gordon have wings?"

"Would you like Gordon to have wings?"

"I guess. Otherwise he will look silly with all those angels if he doesn't have wings."

"What do you think Gordon does while he is in Heaven?"

"Probably play. Eat biscuits."

"I think that Gordon watches and protects you, Jada, Daddy and Mama."

" What else is in Heaven, Mom?"

"Well, some people believe that Heaven is a place where there is everything that makes you happy. What kinds of things make you happy, Joli?"

"I like when you snuggle me. Will you snuggle me when I go to Heaven?"

"If that's what you want in Heaven, then yes. What else do you think will be in Heaven for you?"

"Candy? Does God have candy in Heaven?"

" If that's what you think Heaven is, then yes, God will have candy in Heaven."

"Okay, so can I go to Heaven now?"

"No, Joli. You can't go to Heaven now. You can't go until God calls for you."

"But, I really want candy, Mom."

Where is Heaven?
"Mom, where exactly is Heaven?"

"Heaven is where you want it to be, Joli."

"But, really. Where is Heaven?"

" Well, some people believe that Heaven is in the clouds. Some people believe that Heaven is way above the Earth."

"Why don't you know what it looks like, Mom?"

"Joli, I've never been to Heaven. I have a picture in my imagination of Heaven, but I've never actually seen it."

"Well, I saw it, Mom."

"You did, Joli?"

"Yeah, because the other day, I looked up, and I saw a big cloud. It was bigger than the other clouds. And, that one was Heaven."

"Okay, if that's what you want Heaven to be, then that is what Heaven is."

Infinity

"Mom, can you count past 100?"

"Yes. But not now. You have to sleep. It's late."

"Yeah, but can you count past 100 in Spanish?"

"Yes."

"So, what's the last number?"

"What?"

"What's the last number?"

"The last number of what?"

"The number that's past 100."

"You mean 101?"

"No, I mean the last number. Ever."

"So, there is no last number, Joli. It's called infinity. It just goes forever and ever."

"Right, so what's the last number when you get to forever?"

"No, there isn't a last number. There is always 1 more."

"I don't get it."

"Neither do I. I don't even know what they call the biggest number."

"Why?"

"Because I don't know everything."

"Well, I know THAT Mom."

"Gee thanks, Jo. Think it's time for bed yet?"

"Okay. But, make sure you find out what the last number is, okay?"

"We'll talk about this again when you study the number line, Joli. For now, let's get through
Kindergarten."

"Fine. But, I do know all the continents, by the way."

"I know. That's awesome. Good night."

Oooh! Weekend Fun and smarty pants....

We had a fun first-week of school and weekend of activities here in our family!

Some things we learned this weekend:

* Joli knows all the continents - it completely took us by surprise. Woah.

* When Jada is mad, she calls everyone "vaca" or "cow" in Spanish. We don't know why. But, that's her latest word when she's mad at you. "Okay, you vaca!!" or "Stop it, vaca!!" Hmmm....

* Joli is rich. We finally went through all of the different change piggy banks she has and she had just over $100! Yeah, she's going to start paying rent....

* Joli thinks we are having a brother. Jada thinks we're having a sister.

* Both Joli and Jada can count to 10 in Spanish without any help.

* Try as we might, the girls still refer to Starburst candy as "Starburgers."

* Jada knows fully well how to pee/poop in the toilet when she has her big girl undies on. But, when she is wearing a diaper (a rare thing now), she tests the limits and pees/poops in the diaper. If you catch her doing it, she stares at you, points at you and says, "Go away!" or "Just go into the other room!"

* The kids have my toes. I am watching the girls cleaning up, and Jada has decided to clean up her foam puzzle pieces with her toes only.

**********
Here are the many school uniforms of Joli. A special thanks to Grammy who supplied many of the uniform outfits!



Our good friend Carra read the blog recently and saw that Joli loved making friendship bracelets! So, imagine our surprise when we found a package at our door of friendship bracelet materials and foam activities! Joli and Jada screamed with delight and called Carra immediately!

When I was growing up, my parents always took us to this Papa Ginos after soccer games. So, today, Jorge took the girls to the park to play soccer, and then we went to Papa Ginos! (I hear the official score was Girls: 6, Jorge: 1).
The family knocking back some pizza, orange soda (which Joli said "Oh! This is GROSS!"), and spaghetti.


Jorge and his new clothing trend -- plastic bibs with butterflies, and a bonus "crumbs pocket" which he squealed with delight when he found that hidden gem.

First Day of School

First day of kindergarten today for Joli! Although, she wasn't totally as psyched as we were given that she's just going to the same school. But, now Jo will be there 5 days a week and in a school uniform!

Here is Jada getting ready to take on the U.S. soccer team

Night before first day of Kindergarten trying on her uniform



First day of school!! We took a similar picture on her first day of pre-k!Coming home from school - exhausted but all smiles!

Joli had a great first day! She is in a K-3 classroom where she works 1:1 on a kindergarten curriculum from 8am-2pm and then meets up with the younger kids as a whole group in the afternoon. We love the Montessori way! And, we love the uniform - it makes the morning a whole lot easier!

Latest Journey

This past week, I was asked to be the alumna speaker at the 94th Convocation at Conn College. It was such a great honor to have been asked, and some of the people in attendance emailed me to say I was the best alumnae speaker they had heard (aww...!! So nice!). The Director of Alumni gave Joli and Jada these cute sweatshirts!

Funny picture of Jada -- Joli had dressed her up as Master Shifu. I'm not sure how exactly this qualifies as Master Shifu's costume, but, heck!, they had fun!


Let's see, here is a list of funny stuff that happens in our house:

• Joli loves the Cheetah Girls in India. She loves to say she's Aqua, the one with the "brown skin" (hurray!)

• Jada is obsessed with calling herself Master Shifu or Kitty Kat

• When it's time to go anywhere, Jada says, "C'mon, Cheetahs! It's time to get to work!"

• Yes, Jada still has a boobie obessession, which I'm simply blogging about so we can look back on this and laugh! I'm trying to get her to move from a boobie obsession to a "belly" obsession

• Joli loves to watch A Baby Story in the morning with me.
  

• Jada is just about potty trained - she spends most of her day in "big girl undies" and Joli likes to call Jorge's underwear his "manties"

• Joli starts full time Kindergarten on Tuesday -- and will wear a uniform 5 days a week

• Jada loves the Jonas Brothers and asks for Jorge to play their songs every time they get into the car

• Joli and Jada have discovered "friendship bracelets" and love wearing them on their ankles

• Jada still enjoys saying "Gordon DIIIEEDD!! he's never coming Baaaccckkk!!!"

• Jada is very loving to "the baby" in the morning and greets it every day with "Hello, baaaahhby. I'm your sister, Jada!"

• Jada has developed a funny little laugh that she gives off when knows she's in trouble. It sounds like this, "ahh heeeeiii heiiii yayaaa." It freaks Mari out.

Gonna have to come out with a new website name.... again.....

Well, the superstitious 3 months have not quite passed yet, but it seems everyone -- whether by accident, purpose, or by the excitement of a 2 and 5 year old -- has already found out. And, with Jenny's posting of her own pregnancy test on her website, the proverbial cat's out of the bag.

Yup, we're expecting again! And, we're actually agreeing, so far, on baby names.... more to come on that in about 6 months. Due date: late March/early April

Hurray!!

Pregnant with Joli (found out on November 23, 2002)

Pregnant with Jada (found out on September 4, 2005)

Pregnant with....??? (yes, it's positive.. just very light) - found out on July 30, 2008

Joli's 3 year anniversary

It's hard to believe we have officially celebrated life as a predominantly cancer family. This year, August 17, 2008, marked Joli's 3 years since her diagnosis -- that means, she has now had a prosthesis longer than she had her "seeing eye."

As I mentioned before, I was incredibly sad not to have celebrated her anniversary at Sesame Place like we had done in the past. But, this year, I couldn't have imagined a better way to celebrate.

We met up at Lake Compounce with 3 other Retinoblastoma families we met at Camp Sunshine. There were a total of 5 Rb survivors (one family, bless them, had 2 kids with Rb). It was a very special day because we were spending it with kids who had survived Rb, and we all knew how very fortunate we were to be able to celebrate together.

Here are some great photos of the girls with their friends!


Joli and Jada with their friend Julia (diagnosed at 7 months old, and is now 8 1/2 years old)


The girls with Alia, age 6 (diagnosed as a toddler - can't remember exactly when) and Maryam age 18 months (diagnosed just after being born because of the family history)

Not pictured is their friend Abby who, though has bilateral Rb and only central vision left, was with her older brothers at the water park! Go, Abby!

here are some other cute pictures of the gals:


Oh, Jada....
Jorge and Joli on one of those "free fall" rides -- yikes!

One of my favorite photos of Joli pre-diagnosis. This was when we went to Sesame Place in August 2005, just 4 days before diagnosis, and she has just seen Elmo coming down the street.

Thinking of Joli tonight

This time of the year is always the hardest for me as Joli's mom. I don't think she quite gets it yet, but August 16-18th, I'm a wreck.

August 16, 2005 was the last day of our non-cancer lives. It was a the night before we went to New England Medical Center. It was the night before all of our lives changed. It was the night before Joli was diagnosed with cancer. And, while we now look back on that day, 3 years ago, and we know exactly how the story ends, I still find myself sleepless and teary for the past few August 16ths.

As I was driving around trying to get some weekend errands done with Joli, we drove by a long stretch of women in pink t-shirts who were in the middle of the Avon 3-Day walk. I looked in my rearview mirror and caught Joli waving at the women as we drove by.

"Joli, who are you waving at?"
"I'm waving at those people wearing pink."
"Why are you waving to them?"
"They just look like their having fun."
"Do you know why they are all walking together?"
"Because they are friends?"
"Yes, but also because they want to raise money so that people don't have to have cancer."

silence
"Mom. I wish I didn't have cancer."

silence
"Me too, Joli. Me too."

silence "Mom? I'm brave."

"I know, Joli. You are brave. When I think of the word 'brave', I think of you."

For the past few years, we have celebrated Joli's anniversary at Sesame Place. It was our last family vacation just before she was diagnosed, so we celebrated her journey by going back the past few years. Well, thanks to rising gas prices, we didn't get to go this year. I was really emotional about this because it was such a special place for us and usually served as a nice distraction away from our home.

Thankfully, as all things happen, an even better idea came through from one of the Rb families we have grown to know from Camp. We'll be celebrating Joli's diagnosis day with 2 other families who have also survived Retinoblastoma, and I hope that this becomes a new tradition, too!

More on that when we get back, I'm sure.

But, tonight, I'm thinking of Joli. I'm thinking about how truly lucky I am to have been given the opportunity to be her mother, and how thankful I am that she is my inspiration.

I love you, Joli. Happy Survivor Day!

Joli on her 2nd birthday - 1 month before diagnosis


Joli on her 5th birthday - 3 years post-diagnosis

In my "free time"...

Recently, the social worker at MGH gave a new Rb family my contact information (I volunteered it). They had just been diagnosed, and they were in that very confused/scared/terrified mode. Talking to this family brought me back to August 17, 2005, when Joli was diagnosed. We were terrified, and reading the internet, just got more and more scared. When I did a search for retinoblastoma (almost 3 years later -- can you believe it?), I still came up with the same scary sites. I also came up with a list of support organizations that I know do not exist anymore. When we were diagnosed, I had emailed those local ones and never heard anything back :( Which, of course, made me more anxious.

So, in my "spare time", I've decided to host a website called Retinoblastoma New England. (there is currently another Retinoblastoma of New England group, but they aren't active at all!). The website is www.rbne.org and I'm hoping that it serves as a source of encouragement for new families in our area. It will eventually feature more stories from our friends in the New England area, but for now, it's a lot of Joli info.

Hopefully, somewhere down the line, I hope to make it into a fundraising group that can help families pay for Camp Sunshine travel or maybe even a little bit to help with medical expenses. But, I can't commit to that now... for now, it'll be an online source of encouragement.

Check it out when you get a chance!

Happy birthday grammy!!!

Recognize that cute little face??

Check out Joli who is the poster child for the Tagalog and Spanish posters for Daisy Eye Cancer Fund - an organization based in the United Kingdon for awareness of retinoblastoma.

While we have, literally, hundreds of photos of Joli as a child, we have only a handful of photos with leukoria in it. Most of the leukoria photos were actually taken the night before her surgery -- and, understandably, the camera was always shaky, or the pictures came out blurry, or they were just not well composed. So, I only have a few where I could find pictures of leukoria that were good enough to send to Daisy Eye Cancer Fund. So, this'll have to do!

We're just so happy that Joli (inadvertendly) can give back to the Retinblastoma community and hopefully save the eye - or life - of a child.

Goodbye Hyundai and Hellooo..... Hyundai.

Jorge said "goodbye" to his first car. His first major purchase. For the past 10 years, the old grey Hyundai has served him well -- a drive to Florida, multiple drives from New York to Boston, commuting 2 minutes to work in Long Island, and commuting sometimes 2 HOURS in Boston.

The Hyundai has carried both of our children as infants and has transported our dog, Gordon, multiple times.


And, HELLOOOO HYUNDAI!

Yes, that's how we roll.... Jorge is big baller', shot caller'n in his new blue Hyundai! But, this is slightly tricked out more than his grey one. XFM radio. Super Glow-in-the-Dark dashboard, CUP holders AND BOTTLE holders, and this one actually accelerates. And, it holds more than 1 person in the backseat without cutting their legs off.


Congratulations, Jorge!!

(here, the girls are saying: "Oh, yeah! This is definitely the car we'll learn to drive in one day! -- or take for a joy ride when we're 13....")

FUN WEEKEND!


Finally, some good weather around here! On Saturday, the girls and I went blueberry picking, and they were such professionals at it! We filled up a 4 lb bucket, and there wasn't a "green" berry in sight! Jada and Joli were meticulous about only picking the biggest and bluest berries! They did great!
On Saturday afternoon, we went to our favorite Dim Sum place. The girls love going there and often ask if we can "go to China." In fact, some mornings, I can tell that Jada is dreaming about going because, in a still sleeping state, I can hear her say, "I really want to go to China please."

Joli is starting to ask some good cultural questions, too. This past trip, she asked, "Mom, why are we the only ones who don't speak Chinese there?" That was really interesting. As a side note, the girls and I have also been going out for Vietnamese food (which, they LOVE) and I'm waiting for the day when Joli asks me if they are the same or different.

In my professional work (which some of you may not know about) I write a lot about raising anti-racist children and ways that I expose the children to cultural diversity. So, yes, this latest series of questions will soon make an appearance on one of the online sites soon.

Jada eating her favorite -- sweet tofu!

When we went to Toronto, Lola bought the girls these cute Chinese dresses at the "Largest Indoor Asian Mall". The girls look so cute in these!

Operation Swan Dive

We finally got some pictures of Jorge's flight out of the airplane for Operation Swan Dive!

Getting ready to suit up...

No turning back now, Jorge!
Jorge said this is the moment when he actually felt a little scared, "Humans weren't meant to jump out of planes...."
Karate Kung Fu action at 13,000 feet




Screaming with fun!