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....")