CUTE PICTURES
Joli is back from the hospital and doing well! Thanks to Uncle Paul, Aunt Kirsten and Tita Grace for hanging out with Joli while she was there. Thanks to Daddy (Jorge), too, who, yet again, had to endure the nightmare of a discharge from the hospital.... "kisses to you" (see picture).

Joli turned 28 months while in the hospital, so here are her tigger pictures. Enjoy!

REAL QUICK.
Hi, everyone! Thanks for checking in. Joli is back in the hospital for chemo, and she celebrated her "28th month birthday"., and 3 months since diagnosis. There are actually a few cancer patients on her floor this time, so she got to see some other cute bald-headed kids, and I got to bond with some of the parents who were there.

She's doing well -- had a rough first day again (nausea, etc) but seems to be in better spirits today. Joli will come home on Saturday.

We'll post her 28 month pictures when she gets back. Thanks everyone!

THE VEGA COUSINS MEET!

Uncle Andy, Aunt Marie, and Cousin Lily are here!! They spent the weekend here with us and we all had such a great time! Joli was such a great "big cousin!" She helped to change Baby Lily, flush her "disgusting poo poos", and even let her sit on her lap. We also got a chance to go to Boston and see the Stars Wars exhibit where Joli got to see her friends Chewy, R2D2, and C3PO. If you haven't heard yet, Joli is wild about Star Wars.... and the Backyardigans (who Jorge and I also love).

See ya!

PICTURES ARE HERE!
Here are pictures of Joli's first movie theater adventure, some pictures from Mommy and Joli's day at the playground, and Tita Grace giving Joli a massage. Yes, that's right. Joli was getting a massage. I saw her just lying on the floor saying "Tita Grace! I need a massage!" Oh, like mother like daughter. (notice Grace's new svelte and strong figure! Way to go, Grace! -- if you haven't seen her .. she looks awesome and lost weight eating right and exercising! Hurray, Grace!)

PICTURES ARE COMING....

Hi, everyone! We've been having a great week, and a great chemo round! Joli's white blood cell counts were good, so we ventured out to her first movie. She saw Chicken Little and LOVED it! Jorge really spoiled his girls at the movies -- he bought us a large popcorn, each our own drink (woahh....), and even Reeses Pieces! Ah, yes, Joli loved it (and so did I!). She even got to sit in her own "big chair." Once we got into the car to go home, Joli said, "I want to go see Chicken Little again!"

At the request of Aunt Jenny, here are some of my pregnancy updates: I'm definately feeling the "fluttering" and feeling much, much, much better. I think I've been showing since, oh, my first month. We'll do an ultrasound at the end of the month, and YES, we will find out whether we're having a boy or girl... I think she's a girl! And, poor Jorge.... Joli, "baby Vega", and I already exclude him from things like "Girls Hang Out Time" or "Girls Bonding Time" or "Girls Day Out to Breakfast." His buddy boy for now is Gordon... and his movie theater in the basement. See ya! I'll post a picture soon!

SUPER MAN RETURNS!

As some of you might remember, Joli was Superman her first Halloween, and she made a guest appearance for old time sake!

She had tons of fun going out with the neighborhood kids (about a dozen kids under the age of 6 years old!). She and Jorge even wore matching headlamps! Too cute! Enjoy! (she's also posing with her good friend Christopher - they are just a few weeks apart!).

Wow... daily updates?

Not to pressure the other cousins or anything... but Joli has had an update almost every day now (hint hint).

So, I've mentioned our friends Deirdre and Chase before... Thank GOD for them! They are the ones who have organized all this fundraising for which we are eternally grateful. Honestly, I still haven't been able to even think of those two or talk to them without crying. Jorge and I are truly so humbled by their huge hearts!

Deirdre helped save our sanity today! Despite the wind and rain, Joli and I drove to their house for a play date. Okay, Joli and I INVITED OURSELVES for a playdate... and in true Deirdre fashion, she graciously opened the doors to us! Joli and Sidra (who is just a few months older than Joli) played all morning and had a great time! Joli was really excited to NOT be playing with Jorge or me, and to have a great play mate like Siddy! This was also our first play date with anyone since Joli was diagnosed, which was really a big deal for us. I think Joli and "City" (as she's nicknamed -- too cute!) also loved sticking their tongues out at Deirdre -- like in this picture!

THE JOLI SONG DEBUTS AT #1!!

Here it is, at long last... JOLI'S SONG! (click to listen)

Listen closely, it includes references to the whole family. Er, except those that weren't born when the song was ordered... sorry, Baby Lillian. You'll be on the extended remix, we promise! :)

Produced by Tita "The Hitmaker" Grace and Eric Gold from "Songs of Love".

[might appear as Van Morrison's "Moondance" in your player... not sure why]

Love-- DJ Dad

Spinning the platters that matter

...

We're back from the hospital!
Joli did great this round of chemotherapy. The first day was a little hard -- she threw up a lot! After that, though, she was bubbly, lively, and keeping the nurses and doctors on their toes. Poor Jorge stayed both nights at the hospital on a rather uncomfortable pull out chair, but he did meet a new fishing buddy (a parent at the hospital)! Joli is home now and has lots of energy (a big difference from the first round of chemo). Grammy Eva bought her a little grand piano and tons of toys. So far so good! We also have some anti-nausea medication that we've already started to give her. We think the rest of her hair will fall out this round.

On a really cool "note", Tita Grace ordered a special song for Joli through a non-profit organization called Songs of Love (www.songsoflove.org). They are a group of song writers who create personalized songs for children with serious illnesses. I'm having trouble linking the music to the blog, but hopefully we can figure it out soon!

Joli is 27 months old!

Well, actually she was 27 months old on October 17th, but Jorge (aka Noah) and I were a little busy! And, Joli's not the easiest person to get to stand still these days! She's here with Grammy, and she's busy running around, coloring, and eating everything Grammy makes (and more!).

We go for Chemo Round 2 tomorrow. Deirdre and Chase (our amazing friends who have coordinated a huge "fundraiser" for us) have truly made our day, month, year, lives. Thanks to everyone who has donated gifts for the raffle, and money to us to help us out. We truly can't thank you all enough. A very special thanks goes out to De and Chase, who found it in their hearts to arrange this huge effort. We are forever grateful to you....

So, here are Joli's 27 month face and body photos. She's a little sick of Tigger, and she decided to just sit on him. There's also a great picture of her eating ALL the cookies Mrs. Sandy Alley -- one of my co-workers -- made for her (and, no, she didn't share!!).

Oh, the cool thing, too, is that she actually gained weight a week after chemo. She lost a few pounds (as you can see in the close up hat picture) and then she gained in her 2nd and 3rd weeks! Lolo is also convinced she got taller, too!

Also, for those who haven't heard the news yet.... LIZA IS PREGNANT! Yup, that's right. I'm pregnant -- 3 1/2 months as of today. Happy happy joy joy!

AND NOAH GATHERED THE ANIMALS TWO BY TWO...

You know that expression, when it rains it pours? Well, it's a lie. When it rains it floods. On Saturday morning we woke up to a basement filled with OVER THREE INCHES OF AGUA!!

I probably added another inch with my tears and maybe another half inch in spit from all the swearing.

After a solid week of rain, the ground literally welled up beneath us and delivered a little over 140 GALLONS OF WATER to our fully finished downstairs basement!!

The entire state of Massacusetts is reeling from the flood, but areas like Brockton got hit especially hard. Our neighbors across the street have suddenly discovered they own water front property. I kid you not. A sixty foot wide "lake" has formed in our friend's back yard. His shed, where he keeps his mower and stuff, is half submerged.

Oh... and did I forget to mention we spent a couple thousand dollars this past summer to have the downstairs recarpeted? :(

On Saturday we hired a company to come in and save us. They pumped out all the water, lifted the carpet, removed all the padding underneath, disinfected the carpet and left a couple of blowers to dry it. We'll have to hire someone else to come in with new padding to reinstall our now "suspended" carpet. We were also lucky enough to have celebrities like P-Diddy(Uncle Paul), Chuck D (Uncle Chuck-it) and Eazy-E (Uncle Ed Menghi) come over and help us move stuff into temporary storage in our outdoor shed. Thank you, guys!!

In 30 years, this basement hasn't seen a single drop of water... then we moved in.

Yippee.

Yesterday, Joli asked me if we could put fish down in the basement.

That kid is funny.

Love-- The Dad

...

Next Chemo Round

So, Joli has been doing awesome. Her nurse just came today, and she was even laughing while the nurse was drawing blood!

We go into chemo again next week!

Here's a quick update from The Dad...

We took Joli to the hospital for a "follow-up", where they put her under general anesthesia and closely examined both of her eyes. The enucleated eye (enucleated = eyeballless) looked fine and Dr. Mukai said the healing process was complete. Woot-Woot!

They also examined her "good" left eye and saw no signs of tumor. WOOT-WOOT!! Dr. Mukai said he wasn't really expecting to see anything because in most restinoblastoma cases involving two eyes, the second tumor almost always forms before the patient is two and a half years old. Nonetheless, for the next year, Joli will have to go in for "checks" every three months.

Which means more anesthesia. Blah.

Let me tell you something about Joli and anesthesia... I love my daughter... more than anything... but, when she wakes up from anesthesia... she's downright EVIL.

Some of you guys have been around and witnessed it, but nothing compares to yesterday. It was so bad, the nurse in the recovery room was rushing us to get Joli out of there. Joli wasn't in pain or anything, but they'd put some "drops" in her eye to dilate her pupils during the exam and they made things a little "blurry". I'm sure that freaked Joli out, leading to her outburst. But, man, I had to carry her all the way back to the car. She was wriggling the entire time and it was like she had superhuman strength and her screaming was at piercing volume.

It was like carrying around a pint-sized, gamma-irradiated, Mariah Carey.

But, it was all worth it to hear that she was healthy.

The doctors also took a mold of her eye while she was sedated. It looks like Joli will have her prosthetic eye ready by October 26th!!

COOL MOMENT: While in the waiting room we met a four year old, retinoblastoma survivor. She had been in the waiting room with us for almost an hour, before her mom came over and said "Is your little girl gettting fitted for a prosthetic eye too?" When we said yes, she called her daughter over and told us that her little girl's left eye was a prosthetic. She got it the prosthetic when she was only 21 months old. Liza and I were shocked. Even though we've both been doing all this research on prosthetic eyes, we would have never known if the mom hadn't told us. It looked so natural.

Love== The Dad

...

PAULIE AND JORGE SHOW SUPPORT

Way to show support, guys! Paulie and Jorge decided to shave their heads as Joli is quickly losing her hair. As of right now (Sat night), most of the hair is gone, and we're just waiting for the top part to rub off.

This was the first time Uncle Paul "razored" his head - nice job, Paulie! Next photos of Joli will probably be sporting the no-hair look!

THE BIG HAIRCUT AND BIG POTTY NEWS!

Picture explanations: The ones of Joli with no shirt show you her port and scars from her surgery. That's how the nurses and doctors draw blood and give her chemo medicine. Joli got her hair cut today because it was really coming out in major clumps. It was making us so sad.... We think it'll fall out faster these days, and we'll be sure to post when she's lost her hair completely.

Okay, thankfully she has the 'Good Shaped Vega Head' as Jorge likes to call it! Joli had her hair cut today by our awesome neighbor, Carla! Thank you, Carla!! Joli did great for the first few minutes and then kinda freaked out. But, Carla was able to cut it pretty short and even! So cute!

Joli has been getting really used to her treatments. Today with the visiting nurse, she did really well and didn't fuss nearly at all. She even knows the routine -- clean with the white stuff, brown stuff, flush tubes, and then the "yellow one." She totally was telling ME all the stuff that was happening! Go, Joli! She's so funny, because she gets really disappointed when the nurses only have "plain" bandaids. She loves the pink ones and the Dora ones!

Also, in HUGE toddler news -- JOLI MADE HER FIRST BIG PEE PEE AND POOP IN THE POTTY TODAY!!!! Woooooaaahhh!! That was so awesome! We thought we'd have to put off potty training because of her treatment, but this is just testament that Joli is strong and incredible! Yup, she told me this morning that she had to use the potty (which she's done before on false alarms), but ended up making the "morning pee" in the potty. Then, she got off the potty, and said, "Mommy, I have to make pee again." Sat down, and then said, "Oh! Mommy I have to make poo." Hurray for JOLI!!

Today has been a GREAT DAY!!

HAPPY BELATED BIRTHDAY, LOLO!

Joli's having tons of fun with Uncle Ped, Pops and Grandma these few days. I've actually been able to go to work! She's hilarious. Honestly, Joli and Pedro are like siblings. Ped has been sleeping in Joli's bed and she yells at him, "PEDRO! Get outta my bed! Now! Okay! That's MY BED!" She's also obsessed with making a 'nest' out of pillows because she saw Big Bird on TV making a nest. So, basically, Joli has all the pillows in bed surrounding her while Jorge and I have about 1/2 inch on each side of the bed... and no pillows under our head.

Joli has been having a good week. I think the nausea is done, but she is losing her hair. It was pretty sad for me and Jorge when it started to clump out. Our neighbor is going to cut it tomorrow. We think Joli is going back for chemo next week.

Later dudes! Oh, and surf over to Gavin's and Mia's sites, too! Gavin is now at www.babyboygavin.blogspot.com and Mia is at www.miajewell.blogspot.com They are awesome! Where's baby Lillian's???

Okay... Joli's hair has started falling out. Nothing dramatic, just a few strands here and there. A couple on her pillow when she wakes up.

It'll grow back, we know. But, still, it makes us a little sad.

Let's take a moment of silence for... the 'fro.

[insert silence here]

On a lighter note, she's scheduled for her first "salon appointment" this Thursday. Our neighbor is a hair stylist and she's volunteered to trim Joli's fro down to a more manageable, less bush-like proportion. It should be cute and easier to take care of as the chemo continues.

We'll do the official "shaving" when it starts falling out more quickly.

Anyone wishing to rock a "baldie" with Joli should contact us as the time approaches. ;)

Love-- The Dad

...

Say 'Hello' to Joli's third and newest cousin...

LILLIAN ROSE VEGA!!

7.5 lbs and 19" of cutie.

Congratulations, Aunt Marie and Tio Andy!

Joli's 1 week post-chemo now and doing really well! She's been a little nauseous, but overall, she's active, funny, and doing great! Here is a picture of her on her date with Lolo - they go out to lunch every Thursday together! I also caught her checking Gordon's heartbeat using her stethoscope. Joli knows all the medical terms -- stethoscope, blood pressure, temperature, "flushing the tubes", operation, injection, "tape", and cream. She doesn't like hearing them, but she does say them and refer to them.

So far, her hair is still holding strong -- even after lots of brushing!

Enjoy

WE'RE HOME

Hi, everyone! We're home finally! Joli's chemo went a little long, so we had to stay later. We got home finally around 8:30pm. Here are some pics from the hospital. The one with me and Joli is in the recovery room after surgery. She spent lots of time in the playroom, and she was pretty mobile- even while getting chemo. There was only 1 drug that required her to sit still because they had to check her blood pressure every few minutes. So, she usually brought a toy into bed with her.

See the Dora suitcase? It was actually quite heavy, but Joli wanted to wheel it all by herself. She wheeled it all the way down the pediatric floor, into the hallway, into the elevator, out the hospital doors, and all the way to the parking garage! Woah!

So far so good...! Tonight, Jorge and I have to give her an injection... yikes!

NO PICS, BUT QUICK POST

Hi, everyone! Sorry no pics yet, but we wanted to update you. As I write this, Jorge is taking his turn sleeping on a very uncomfortable chair next to Joli's bed. I spent the last 38 hours with her, and she's doing great! She's reacting really well to the chemotherapy, and she actually has so much energy that I had to call Tita Grace in to give me a little rest! Joli was in true form today. She was chatting up a storm and telling all the nurses they did a "good job." She even put stickers all over one of the doctors that came to check on her. And, she called him "disgusting." ha ha ha.

Yesterday was a slightly different experience. Of course, we were all anxious and nervous. Joli was freaking out (and she had every right to), and the anesthesiologist decided it would be a great idea to give her a valium derivitive. I'm actually going to have Jorge post more on this, because it'll be infinitely funnier when he tells the story. Let's just say it reminded me of all the Friday/Saturday night college festivals where all your friends say, "Man, I love you. I really love you, man." Yeah, that was Joli. Age 2.

She slept off most of the evening, but by 10pm, she was ready to party! So, I played with her in the playroom (and chased her around with an IV.. now I know what it's like to be a camera man on one of those reality shows...) until after midnight. She slept and then woke up at 7am, sat up in bed, and said, 'Uh, Mom. What do you think you're doing?' I replied, "sleeping. now be quiet." That didn't work. That just made her laugh.

So, it's now 9pm our time. Joli is in the middle of her second dose of chemo, and she receives her third dose tomorrow. The routine, basically, will be 2 nights in the hospital for 3 rounds of chemo. Then, a visit on the 4th day for blood tests. We do this 5 more times. One down.. five to go! Little did we know, Jorge and I actually have to give her a shot at home for 10 days each time! Eeek... I guess we'll be cutting a lot of short straws to draw.

Good night! Rest assured little Jo-Jo is doing just fine! Thanks for all your prayers and concern!

I forgot.. it's the 17th ... and some news about Joli's next step

So, here is Joli's tigger body shot and yet one more afro puff.

We've been holding off posting some news on the blog because we were waiting to tell all of our family members the next stage in Joli's recovery. As some of you have heard already, the decision has been made to proceed with chemotherapy. Joli will go to chemo for 6 months in 3-4 week intervals. On Tuesday, she'll have surgery to have a central line placed into her chest where the chemo will be administered (as well as blood drawn and any pain meds given). We've posted great afro pics because, chances are, she'll lose her hair as a side effect. We're not looking forward to the next 6 months, however we are so thankful that we have little Joli! So, of course, we'll do what it takes to make sure she has a long, healthy life.

Joli's chemo is preventative by 80%. When the eye was removed, the tumors were removed, and her test results showed that there was no cancer in her body. However, there is a 20% chance that cancer could develop if we do not do chemo treatments. Given that we've somehow gotten the 3% of all cancers (retinoblastoma), and seem to be in the 2% of retinoblastoma/enucleation cases who actually need chemo, 20% is just too big a number for us.

So, of course, please continue to send good thoughts towards this next leg of Joli's journey! Especially, please, send good thoughts on Tuesday as she goes into surgery and receives her first chemo treatment!

Oh, and if you're keeping track of days (which, we've sort of lost track of, ourselves!), it's exactly 1 month since Joli was diagnosed with retinoblastoma. I guess the "17th" will continue to be a special day for the Talusan-Vega family!

Thanks everyone!
-Liza and Jorge

The Afro Puff....

Just a few pictures to truly appreciate the Afro Puff that is Joli. Ah, yes, she rocks it old school.

Yet... it's no wonder where she gets it from.

Okay, Aunt Jenny... here's a fun picture! We're going into Boston this weekend, so we'll have more to post on Sunday! Later dudes!

SOME NEWS...

The MRI and spinal tap are clear! We're still waiting to hear about the eye pathology, which is taking some time. Dr.Mukai is meeting with Dr. Grabowki today to go over some test results, so we should have some more news after this weekend. Thanks!

Feeling groovy!

Joli is doing great! We go to the doctor again tomorrow to find out the results of her tests and to check on her post-op. Joli's eye is starting to open a bit - we'll probably post more of those pics when it happens. It's been swollen shut, sort of, since the surgery, but now we can see into it a bit more. If you click on the picture of Joli and Grace or the one with her on the "orange and pink" slide, you can see it a little better. It's basically really red and shiny (from the glass implant and lens). Having a great time! Thanks for all the cards that are pouring in (and the gifts!). See you soon!

GAVIN TALUSAN LACANLALE!

Congratulations, Mari and Patrick! They just welcomed into the world little Gavin!
All are doing well! Mari's water broke around 8:30am (west coast time) and Gavin was born around 3pm! Hurray! Joli has another cousin to boss around :)

Congratulations! (and Gavin shares a nice birthday weekend with Liza -- who turned 30 on Saturday, 9/3).