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

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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).

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.