JUST REAL QUICK POST..

Thanks to everyone who's been checking in on us! Joli finally had her MRI and spinal tap today. Wow.. that stunk (the process.. oh, and the smell of urine in the elevator.... which Tita Grace was quick to blame on Little Joli!). Joli did great - it would be difficult for ANYONE to go all day without food, then to have to go to the fear of a large gas/mask stuck to your face, and then wake up all bandaged and poked! Joli had a tough time coming out of the anesthesia, but she eventually made it through! Dr. Grabowski (the oncologist) said that her spinal fluid was clear (which is good news). He and Dr. Mukai (the surgeon) are presenting at an International Retinoblastoma conference this weekend, so we won't be able to get our results until Tuesday. But, we're pretty hopeful!

FUN WITH FAMILY!

We've been surrounded by family this past week (still can't believe it's only been 10 days since we found out about Joli's cancer!). Grandma Eva has been here all week, and Pops and Uncle Ped made a repeat performance on Saturday. Joli's cousins - Michael and Leah Chung - along with their mom and dad stopped by all the way from New Jersey to see Joli! They had so much fun playing on the swing set and having Michael pull the two girls all over the yard!

Joli got her stitches out on Friday. Unfortunately there was a schedule problem and the MRI/CT Scan/Spinal Tap have to wait for a while. But, again, because the oncologist thinks it's 98% clear, it's not such a rush anymore. We also found out that the tumors were located in a "good" place and the chance of spreading is minimum. Whew! I think that was the first good night of sleep everyone got in about a week!

We're just waiting for Joli's eye to open up on it's own. While she was sleeping, I did take a peek in there. Lolo says she can't open it yet because the muscle just isn't strong enough post-surgery, but she's starting to "blink" a little bit. We think maybe tomorrow or the next day it'll open.

As you can see, Joli also got her glasses!! She's doing pretty well wearing them. Of course, we've had to resort to things like, "Joli, you can't go out to play unless you put on your glasses" or "Joli, you can't drink your juicebox with a straw unless you put on your glasses." She's fought it at first, but now she's wearing them! Hurray! Joli has to wear them until she's 18 years old - mostly for protection.

Enjoy! We are!

JUST ANOTHER GREAT DAY in the LIFE OF A PIRATE!

(note: the ELMO patch picture was taken in a MIRROR - so the eye is reversed!)

Joli went to her favorite local hang out spot - the Easton Children's Museum - with Mom and Tita Grace. Dad and Grammy went looking for good fishing spots (Jorge's new favorite hobby since we got the news about Joli. He says it's good "reflective" time!).

No news yet, folks. But we did meet with the surgeon who said Joli's surgery site looks like it's healing well. We also met with the oncologist, who said, given Joli's situation, the chances of cancer in her body are slim -- 98% chance that she's free and clear! We'll do the MRI, CT scan, and spinal tap on Friday in Boston.

Joli's getting super used to the drive to the city. In fact, she already knows a few landmarks to look for (the giant bins with the color stripes, the big "windmill", the NE Aquarium billboard!).

Here are some pictures where she looks HAPPY (sort of!). Mari and Grace thought the pictures were too depressing that I posted (well, what do you expect?? we were depressed!). These ones show her doing some fun, normal stuff :) There is one post-appointment where they took the patch off already. To us, it really doesn't look all that bad -- hopefully you don't think so either! No one today reacted bad to her (yay!) and most even still said, "you're so cute!"

Thanks everyone! Probably more of a post on Friday when we go to the doctor's!

PICTURES OF HER EYE

Hi, again.

Here are some closer pictures of Joli's eye. What you see in her right eye is the reflection of the tumor looking back at you. The pictures are a little blurry, but I wanted you to see the contrast between the left and the right eye. In the left eye, you sometimes see a little white reflection (which is normal). However, if you look in Joli's right eye, you ALSO see a more "milky, larger" reflection. That's the tumor.

DAY 5

Joli is doing great these days! We are anticipating her appointment tomorrow, so after a few days of "holding it all together", we're slowly starting to unravel as we anticipate our appointment with the oncologist.

Here are a few pictures of Joli just before surgery and just after. As most of you who follow the blog know, we take a picture of Joli every "17th" of the month. Of course, the 17th was the day we found out about Joli's condition, so we took her tigger pictures. You'll notice, if you look at her RIGHT eye, you'll see a very milky reflection. That milky reflection are the tumors.

DAY 3

Wow! We are so truly thankful for all the prayers, emails, and phone calls that have been heading our way! We're hearing from family and friends who we haven't see in a long time, and it honestly makes us so happy! Thank you!!!!

Joli is doing superb! She does have "good minutes" and "bad minutes", but overall we're really well. There are times she screams "I don't like my boo-boo, Mommy!" or "It's so itchy!" and those are the moments when we really lose it (not in front of her, of course). But, other than those moments, she's been riding bikes with the lovely kids in our neighborhood, blowing bubbles with Lolo (thanks to the Panganibans for the "magic bubbles!"), going down the big slide in our backyard, playing hide and seek with Uncle Pedro, and kicking the volleyball in the yard! She's doing so well!

The tough part was changing her bandgage last night. It was pretty much covered in popsicle juice, apple juice, and whatever a 2-year old wants to eat when she's sick. It took a whole bunch of us to change it -- well, 3 people to change it; the rest for moral support. That was awful. Thanks to the "nerves of steel" from our nurse friend, Ligaya, Joli's bandage was changed. It really didn't look as bad as we thought it was going to look. Her eye is sewn shut and it was just a little swollen with some bruising.

Last night was rough -- the new bandage we have on there uses tape that isn't as glue-like as the original. So, sure enough, at one point, Joli's bandage was off (oh, grayyyttt). So, Jorge and I mustered up all the courage we could and re-changed it. She looks great!

Okay, I gotta get off because Joli is begging me to turn on the Wiggles.

Lots of love~

SHE'S REMARKABLE!

Just an update before I go and snuggle with my little Joli --

She's had such an awesome day today!

7:30am - woke up and demanded that someone bring her MILK... NOW!
10:00am - was dancing with her Spiderman doll and singing
12:00pm - was on the slide and swings with the boys next door
1:30pm - took a nap (oh thank God! I was tired of chasing her around the swing set!)
3:30pm - woke up at her usual time and was spoiled with cupcakes and goodies!
6:00pm - was riding bikes outside with the neighbors
8:00pm - got her hair braided by Grandma Eva
9:00pm - sound asleep after a busy day of fun and adventure!

I hope this is reassuring for those of you (us!) who may be still in the grieving stage. Honestly, Joli has bounced back from this crazy ordeal. We LOVE TODAY!!!

We see it this way -- we have 4 days until we have to go to the oncologist, when we find out if the cancer has spread. Because we can't hop into our "Back-to-the-Future/ Michael J. Fox" time machine, we're gonna LOVE EACH DAY!!!!

We'll keep ya posted! We know others may be having a tougher time with this than we are, so rest assured that little miss Joli is having a good day!

Love, Liza and Jorge

THE LITTLEST PUERTO RICAN-FILIPINO PIRATE YOU'VE EVER MET!

Well, we're imagining that if you're checking this "blog" then you must at least be following what's been up with Little Miss Joli Irene. I've decided to just paste an email that Jorge has sent out to most of our friends on Long Island because, well, it's just friggin' well written :) (Go, Jorge! Go, Jorge!). Sorry no pics yet, but be certain that we're gonna document the crazy adventures on the Seven Seas with our Joli! (hey, she's already a "booty" grabber, so it seems this was her destiny!).

WE LOVE YOU, JOLI!!! WE LOVE YOU!!!!! WE LOVE YOU!!! WE LOVE YOU!! WE LOVE YOU!!!!!
(an email sent by Jorge):

Hi, Friends!

So, in the last 48 hours a lot has happened in our little family.

My daughter's decided to become the world's smallest and cutest pirate... complete with eye patch. :)

We have spoken to or emailed many of you personally, but for those who may not know the whole story, here's what happened...

On Wednesday we took Joli in for what we thought was going to be a routine visit to the doctor. My father-in-law, who's an opthamologist, had noticed that Joli's right occaionally would "wander". He said it was pretty normal for kids her age to experience that, but he recommended that we go see a pediatric opthamologist and learn how to correct it as early as possible. So, Wednesday morning we went to the doctor believing that, at worst, Joli might have a lazy eye. No big deal.

When the doctor looked into Joli's right eye, his reaction was pretty immediate. He let us know that there was a large tumor growing inside of Joli's right eyeball. Yet, Liza and I had no way of knowing. That may seem impossible, but it's true. The doctor said it's quite normal for something so dramatic to go unnoticed because kids bodies are so adaptable. Apparently, as Joli's right eye faded, her left eye with its perfect vision took over.

Liza and I were floored. But, things got even more surreal when the doctor told us that he was certain that Joli's right eye needed to be removed as soon as possible.

She has a very rare type of cancer called "retinoblastoma". It occurs in about 1 in 20,000 kids.

Liza and I, on cue, fell apart. We took a breath and then fell apart again.

And then amazing things started happening... the doctor made a call to Massachusetts Eye and Ear Medical and got a hold of a guy named Dr. Mukai. It turns out that there are only five or six doctors in the entire country who specialize in this type of cancer and one of the best, Dr. Mukai, worked a few blocks away from us. Though he had two surgeries scheduled for that day, he made time, in between surgeries, to meet with us and examine Joli's eyes. He confirmed the previous doctor's diagnosis-- Joli's eye needed to be removed to eliminate the risk of the cancer spreading.

[insert me and Liza falling apart again here]

Dr. Mukai was incredibly sensitive and comforted us with his words and his knowledge. Apparently, in 90% of cases, when there is tumorous material in only ONE eye, if the eye is removed, the child will have a full recovery without the cancer reappearing and without chemotherapy or radiation treatments.

The next day, Liza Joli and I, surrounded by our families and the thoughts and prayers of friends and family all over the country returned to the hospital to have Joli's eye surgically removed.

The operation took a little over five hours and when Dr. Mukai re-emerged, the news was good.

There is no cancer in Joli's left eye and the right eye was successfully removed.

Liza and I fell apart again, but this time it was a good kind of disassembly. :)

When we went down to the recovery room, Joli was groggy and crying. Liza picked her up and she stopped crying immediately, curled up in her lap, and fell asleep. A few minutes later we were able to leave recovery and head up to her room, where the rest of the family was waiting.

And here's another amazing part... as we left recovery, Joli lifted her groggy little headed, looked over at the nurse's station and waved. "Thank you. Thank you. Bye-bye," she said.

My kid ... rocks.

We spent a few hours up in her hospital room, letting the anasthesia wear off. There was lots of laughing and lots love in the room. Joli talked to everyone, but only wanted to be held by mom and fed juice by dad. ;)

So, we returned home last night. Joli slept in bed with us, occasionally complaining that her patched eye was "itchy", but then quickly falling back to sleep and snoring.

We think the worst is over. We'll be going back to the doctor today for some follow-up and Joli will have an MRI next week to verify that there is no cancer in other parts of the body.

The healing process takes 6-8 weeks and, after it's complete, Joli will be fitted with a prosthetic eye created by one of the best teams in the country. Liza and I have seen tons of pictures of other kids who've been fitted with fake eyes and it's friggin' incredible. You simply can't tell that the eye is fake. It even moves like a normal eye.

So, by the time many of you see Joli next, you won't be able to tell what occurred. :)

Friends, Liza and I want to thank you for your thoughts and your prayers. We were both overwhelmed to learn that so many of you were thinking of us these last few days. I sincerely believe that those thoughts and prayers made a difference. I sincerely believe that you played a part in our daughter's well being and we thank you so much for that.

Please feel free to email me with any questions you all might have.

The last 48 hours sort of stunk like ... , but the next few days are already smelling like roses. :)

Love-- Jorge, Liza and Joli

COME AND PLAY... EVERYTHING'S A-OKAY!

We absolutely LOVED going to Sesame Place in Pennsylvania! We all had such a great time and are hoping to make this an annual event!

Joli is about 35 inches tall as of 8/14/05! Let's see how tall she is when we go back next year! She went totally nuts when she saw the parade, too! Check out her expression when she saw Elmo coming down the road!

Yup! More Joli pics! These are from this weekend and also from Pop's camera during Joli's birthday! Enjoy!

Preview of what's to come?

This is Joli talking on the phone with Uncle Paul... I gave her the phone while we were in the living room, and she decided she needed some privacy and went to her room, closed the door, and crawled under the covers.... oh great.

Too Cool for School...

We've been having lots of fun this summer so far! Joli has spent time at the playground, played with Lolo, and even went to a Seafood Festival in Rhode Island (which, was soooo far, but worth the trip!). There, she saw Eight to the Bar -- her next favorite band after The Wiggles (tough competition, sorry...). She loves the song The Shelf and doubly loves that my friend Megan Keith (who sings with ETTB) waves to her the entire time she is there! Hurray! Honestly, we play their CD just about as much as we play the Annie Soundtrack (which, is a whoooole lot!).

More pics after we get back from Sesame Place!

For records sake ...

Okay, I just spent the last hour or so looking over all the old Joli blogs! awww! It's amazing how fast it all goes. I'll post some pics in the next day or so. Jorge is off the next few weeks, and he and Joli have been having tons of adventures. Yesterday, they went to the New England Aquarium, where Jorge said she was, by far, the best kid there. Yeah, Joli's pretty good! :)

For records sake.. here are some things Joli does now (although, honestly, there's just too many to name!):

Talking -- yup. She talks. she answers the phone, tells you what she wants, and even says things like, "Okay, Mom.. I understand!". She knows how to say "sorry" and her favorite thing to say is "It's okay. I like you. It's okay." There are times I'm amazed that she knows things -- for example, she was eating an apple and she said to me, "Mommy, I don't like the stem." Whattt?? When the heck did she learn the word "stem"???

TV -- yes, okay, fine, she watches TV. But, we're always watching with her (like that makes it any better... I know). Funny things -- she repeats everything! We were in the grocery store and she reached for my hand and said, "Mommy, doyoutrustme?" And I said, "Excuse me, Jo? I didn't quite understand what you said." So, she said, "Mommy, do youtrust me?" Again, I said, "uh, excuse me?" And she said, "You know, like Aladdin... do you trust me??" I almost peed my pants laughing (because that's totally a line from the movie Aladdin! Now, when she wants you to follow her, she said, "C'Mon... do you trust me?"

Songs-- call me crazy, but I think Joli has an innate sense of harmony... last night, we were in bed singing "Baa Baa Black Sheep". I sang the beginning and when we got the part about "yes sir, yes sir, three bags full", Joli was singing in PERFECT THIRDS!! Whhhaaaaatt???? She actually does that a lot. It's so awesome!

Joli also knows just about every word to the Annie soundtrack... we listen to "It's a Hard Knock Life" like 100x a day.

Playing Pretend -- Joli loves to hug things. Grace has caught her hugging rocks and saying "It's okay. I like you. There, there. It's okay." She loves the Little People (especially, Sonya Lee-- go, Asian doll!!) and anything Wiggles. She has a couple of little baby dolls that she takes good care of, too.

Sports -- while not playing sports quite yet, Joli can follow boxing, basketball, and baseball pretty closely.

Favorite Foods -- she is a freak for hard boiled eggs. So weird. She also loves pasta and meat. Once in a while, she opens the fridge (all by herself) and takes Daddy's donuts (aka "cake"). She's also a fan of sugar free Jell-O, which she gets by saying, "Mommy... I NEEEEEEED Jello!"

All-in-all, Joli is adventureous, polite, kind, funny, and hilarious! (Especially when she tells her daddy, "Dad.. your peepaa (aka tummy) is TOO BIG!").