Some pictures
Well, I made the phone call and scheduled Joli's LAST CHEMO VIST! Can you even believe we are at round 6? We have a busy week coming up with 3 days of chemo, a prosthesis fitting that will take an entire day, and an appointment for "baby sister". Whew!

Joli sleeps at Lolo and Lola's house 1x a week, and Jorge and I find we miss her like crazy! The picture is of Jorge seeing Joli just after she was dropped off by the grandparents (she's pretty busy watching "The Incredibles" though).

Thanks to all the people who responded so lovingly to the Conn College article about Joli. We heard from some of our classmates we hadn't seen since, well, 1997, and were so moved by the kind words and emails.

Pregnancy news - I'm now 7 months. Woah. Joli is imitating me in one of those pictures because I can typically be found sitting on the couch, eating, and rubbing my belly!

Nothing new...

(This is the super duper belated picture that Paulie was supposed to send us like 2 months ago of most of the family at Thanksgiving. Our friends Ligaya, Chuck, Mia, Tita Lucy, and Frank also celebrated with us in addition to the fam! )

Really, nothing new to report. Joli is doing awesome and is having an incredible round post-chemo. We're gearing up for her last one (which, surprisingly is in 2 weeks already!). She's loving her V-Smile video system thanks to Pops and Grammy, and she truly is rockin' it! Lola and Lolo even went out and bought her the portable one so she can use it at their house and at the hospital. She has somehow collected just about all of the games at this point.... Jorge and I actually like playing the games, too!

"Baby Sister" is doing well in utero. She's keeping me up at night (in addition to Jorge, Joli and Gordon's snoring) doing flips and flops. I'm flying into my 3rd trimester next week -- We can't even believe that in less than 3 months we'll have another little Talusan-Vega keeping us busy!

So, nothing really new to report, which, honestly, is kinda refreshing...!
-Liza

It's the 17th~ Joli is officially 2 1/2 years old

30 lbs (she lost some weight since last chemo) and exactly 3 feet tall!

Tonight, Joli decided -- somewhere between Lola's house and our house -- to turn her prosthesis upside down. Because she couldn't figure out how to turn it right-side-up again, we had to take it out. This time, though, we let Joli try and take it out, wash it and play with it a bit before putting it back in (we figure that's good "ownership" for her and great for her self-confidence).

We have her "17th" face shot and body shot. That prosthesis looks pretty darn good, huh? And, the body shot... well, Joli's getting tired of doing this Tigger thing. She's done it exactly 30 times in her life!! (1x a month). But, I promised we'd keep going until she's, oh, 18 years old. Whadda you think?

Enjoy!
ps.. check out this article Connecticut College did on Joli and the funraiser De and Chase put together http://www.conncoll.edu/news/enews/jan06-1.html

Some pics...

This was taken during Joli's Round 5 chemo. We pretty much stay in bed during the actual chemotherapy and go to the playroom when Joli is just getting her saline drip. (Yes, that is a tall cup of coffee in her hand..... empty of course). There is also a picture of her cousin Gavin and Tita Mari visiting from California during the Christmas break. We're so glad they got to visit before Joli went into chemo!

QUICK CHECK IN....

Joli's in chemotherapy right now and doing awesome. I'm home (Jorge and I alternate overnights) and left in great spirits because Joli was resting comfortably. This round has probably been the best out of all of them -- she's eating well, sleeping well, pooping well (sorry.. but if you check the December 17th posts, you'll see why that is so darn important to us!), and in good spirits. She's been a little lethargic and "flat" as I call it, but otherwise doing awesome!

We always count our blessings while we're there... you know, you think you "have it rough" until you meet any one of those families and children on a pediatric hospital floor - especially the little ones with cancer. Our roommate at the hospital is 5 years old and has leukemia, and he is going through an extremely tough battle for his health. That family is especially in our thoughts and prayers tonight...

Joli will be home tomorrow, and then, HURRAH, round 5 will be all over!! Big party. As Joli likes to say "Oh, yeah, baaaby!"

Thanks for thinking of us. Please say a little prayer, if you can, for all the little kids with cancer out there who are fighting for more than we can ever understand....

SO FAR SO GOOD!

Sorry everyone... I know people have been checking the blog a lot today to see what has happened with Joli's exam. We've just been so exhausted and spent most of the day sleeping!

I'll get to the good news ... Dr. Mukai did NOT find any tumors in her left eye nor in the right eye socket! Hurray! Hurray! Hurray!!! We can breathe a little bit easier. He says he doesn't really anticipate anything to develop. -- Yeah -- Jorge and I have learned our lesson, though, and we still "pray for the best.. brace for the worst...." But, I guess that comes along with being a parent, right? People say you never get a good night sleep ever again!

We'll go back for another EUA again in April... and then we need to start bringing "baby sister" in when she reaches 2 weeks old. He'll follow the new baby very closely - even though he is confident we don't have the genetic form of retinoblastoma. But, it's good to know he's very cautious and very careful!

Okay, our day started at about 5:00am when Jorge and I woke up to get ready. ery tough after not sleeping that night... The alarm went off, and Jorge said, "Are you kidding? It's already time to get up???" Joli was up by 6:00am (and, in a good mood, thankfully, even when we told her we had to go to the hospital), and we were out by 6:15am. The check-in room was pretty crowded already with lots of kids - so I'm sure it was comforting for her to see other children her age. The nurse who had helped her back in October was very surprised at how much Joli had grown both physically and emotionally! Even Dr. Mukai was surprised at how "healthy" she looked! Joli cooperated about 98% ... she fought a bit when they had to put the drops in (which, c'mon, is really a horrible "flashback" moment for her-- the last time someone held her down to put drops, she got her eye taken out!!). Jorge brought her into the operating room (I'm banned because I'm pregnant). About 30 minutes later Dr. Mukai came out and told us the great news!

Anesthsia is always a bummer thing. Joli had a really hard time coming out of it -- although, much better than any other time. When she wakes up, she can't really see and is still in a "sleep funk", so Jorge and I do our best to be firm yet patient with her to get her dressed. Once we got home, though, Joli was great. We all crawled into bed, watched a few movies, and took a really really long nap.

Thanks for everyone's well wishes and prayers! We head into chemotherapy on Thursday, so I probably won't "blog" until after the weekend.

THANKS FOR ALL YOUR EMAILS, PHONE CALLS AND LETTERS!!!!!!

-liza, jorge, joli and 'baby sister' (as Joli calls her)

BIG WEEK COMING UP...

As if the holidays aren't chaotic enough, we have a big week ahead for Joli. On Tuesday, she'll go in for her second Exam Under Anesthesia (EUA). Her doctor will put her to sleep and then explore her eye to see whether or not any tumors have "seeded" or developed. We'll do this every three months for about a year or so; then, we go to exams about 2x a year; then we go to 1x a year when she gets a little older (like 4 years old). On Thursday, she'll go back in for chemotherapy -- ROUND 5! Of course, we're holding our breaths (and praying a whooooole lot) that we get good news on Tuesday.

So, looking to Tuesday: The BEST news would be that there are no tumors and that we'll be done with chemotherapy next month. The ICKY news would be that the doctors find tumors... and that would mean radiation or additional chemotherapy. Pleeeeease, God. Pleeeease let Joli be done with all this!!!

So, whether you pray, you send "good vibes", or you just keep us in your thoughts, please send some good old emotional/spiritual/friendship support her way this week. Our family, specifically, believes in the power of prayer, and we hope that we get good news this week. We also know God won't send us anything we can't handle... so we're preparing for whatever news we get, you know?

In the meantime, Joli is "incredible..." no doubt.

LOTS OF HOLIDAY CHEER!

We had such a great Christmas and Vacation time here in our house. Joli finally (whew!) got over her illness and started feeling better right before Christmas. She got tons and tons of gifts from all over! We also had relatives visit us during this time. Pops and Pedro brought along Titi Ericka and Uncle Dennis (all the way from Orlando, FL!) for a visit. Then, Tita Mari and Uncle JP and Gavin arrived from California to visit!

My brother Jonathan called today and said, "So, Liza, are you showing at all with your pregnancy?" After I got over laughing hysterically (because I feel like I've been showing since week 3....), I decided to post some almost-6-months-pregnant photos here. Enjoy! Happy New Year!

HURRAY! SHE'S FEELING BETTER!!

Joli's still complaining of stomach pains, but she's in a much better mood today. Thanks to "the Ladies" in the Stonehill admissions office who gave her some awesome early Christmas gifts! We hid them under the tree, but she still managed to find them and open them.

Oh, and ammendment -- so, see our tree? Well, notice there aren't too many presents under there. WELLLLL.... I got home from work today and Jorge pointed me towards the Christmas tree. The Brockton Visiting Nurses (our 2x a week nurse!) came and dropped of about a dozen presents along with gift certificates!! They were probably doing one of those "giving tree" types of things, and it was amazing to be recipients of the anonymous generosity. SO, THANK YOU!!! Joli, honestly, has so so so so many presents now under that tree! We've also received some wonderful presents in the mail from friends and even a few dozen Christmas cards from students from colleges and high schools. THANK YOU!!!

Some days are easy.... some days are not
(if you don't want to hear the ugly side of treatment, please don't read this!)

Okay, well, usually Jorge and I only post good stuff because only GOOD STUFF has been happening to us. But, I do think, if this is a true "documentation of Joli" we need to include some of the not-so-great-moments. So, if you don't want to read it, you don't have to. I just thought in all fairness to her, and to record keeping, I should post this.

The past few days post-chemo (and even during chemo) have probably been the hardest since we started this whole journey. As I wrote a few days ago, Joli caught a viral infection while undergoing chemotherapy. So, she's been really bummed out from chemo and now has to battle this illness. I gotta tell you, there is nothing more difficult than to see your child in excrutiating pain -- and know that you can't do anything to take it away. We've been through this a few times -- when she lost her eye, when she had to go through surgery and chemo in September, etc. But, for some reason, I think this is really tugging on Jorge and me more than usual. I also think we're so tired, so exhausted, and feeling like we've had enough of seeing her hurt so badly. But, then again, Jorge and I are only hurting emotionally... it's our brave, strong, amazing, beautiful Joli who is in pain physically.

So, lots of it is related to poop. Yup. Poop. One of her chemo drugs makes her constipated, and coupled with not eating and drinking because of her RSV, Joli is in pain. All we can do is watch her cry, scream, and yell "Why, Mommy!! Why, Daddy!! I'm scared!! I'm sad!! It hurts!!" And, we do our best to just hold it together.... What really hurts us (again, emotionally... it's nothing compared to what she goes through physically) is when she looks at us and says "I'm so sorry! I'm so sorry! I'm so sorry! It's my fault!!"

Joli, I know somewhere down the road, you're going to read this, so I'm going to write this in for you now. It's not your fault. None of this is your fault. We're so sorry you have to go through this, and Daddy and I hope we can be as strong as you are being right now at the age of 2 years old. We're both so sorry you are in pain. We are both so sorry it hurts right now. We love you tremendously. We love you, honestly, more than we love our selves. I know Daddy and I would trade places with you if we could. Yet, I know neither one of us could deal with what you go through even for a second. You are so much stronger than us. You are so much braver than us. And, we love you.

For everyone else reading this (and, Joli... it'll be cool for you to see just how many people read this, follow what's going on in your life, and LOVE LOVE LOVE LOVE YOU!!), please pray for a speedy recovery for Joli.

Thanks,
liza and jorge

Joli is 29 months old!

honestly, this eye looks better and better each day! Joli is still super sick, and I imagine that's really hard to battle post-chemotherapy! She's a bit grumpy, but overall she's doing the best she can. Let's just pray she's healthy for when "Santa" appears on Sunday! Notice how much smaller Tigger keeps getting next to her! You can barely notice him now!

Just got home....

Joli just got out of the hospital because she had a couple of complications. We usually get discharged early Saturday morning, but ended up staying about 12 hours later (so, yes, we are home now!). She developed RSV - or a respiratory infection. She spiked a fever of 103 last night and then spiked again this morning to 101. We had to wait until she stayed below 101 for at least 8 hours before they discharged us. So, we are home. Joli isn't allowed out or around people right now, and we're hoping she's all healthy for Christmas! It kind of stunk because she likes to go to the playroom at the hospital, but she ended up being on isolation and precautions - like, the doctors and nurses had to wear protective clothing and masks before coming into our room! But, we're home and happy to be sleeping in our own beds now! More pictures tomorrow, probably!

Just checking in...

Hi, everyone! Thanks to all the friends and "friends-of-friends" who have been checking Joli's site lately. The fundraiser recently ended, and hundreds of Thank You letters have been sent (which is maybe why people are checking). I did my absolute best to try and send a letter to everyone -- but to get all the names and addresses accurate seems nearly impossible. So, if you check this site and didn't get one, please know that we are forever thankful for your support and help!

Joli is in the hospital right now getting chemo Round 4. This was a very interesting hospital stay -- we actually met 2 other children who have retinoblastoma!! It was semi-planned (sort of) to meet. Joli was scheduled for chemo, and a little girl from Rhode Island was heading to Boston for her yearly exam. There was also a family from Arizona (yes... Arizona!) who was there doing proton beam radiation (Joli didn't have this... the point of PBR is to save vision in the eye.. she was way too late). We all met at the Yahoo online support group, and happened to all be there at the same time! So, Joli met 2 other kids with prosthetic eyes who had the same exact cancer as she does! So awesome!!! (well.. not awesome that they all have Rb... but you know what I mean!).

The hospital staff put together an amazing Christmas party for the kids.


You know all those times you donate at church for "the giving tree" or whatever? Well, we actually got to see what it was like to be a recipient for that generosity. "Santa" gave Joli 2 presents and even addressed her name on them! She was a bit freaked out about Santa, but had no problem chowing down the chocolate cake!

I'm exhausted. This is a pretty tough job pregnant! But, we're psyched that Joli is healthy, that we have amazing friends, and that we have each other!

Love, Liza

Joli's BEAUTIFUL SIDE PROFILE (of her prosthesis!)

Really no words to describe this feeling....

Today Joli went home with her new eye. Oh my gosh. There truly are no words to describe the feeling when you see your own child feel more beautiful than ever. We were a little worried about the process because it has been a long, long, long day -- and the eye was inserted at the very end of the day. We had to wake up Joli from her nap for the insertion, and, surprisingly enough she was very cooperative and even asked if she could help do it!

Joli then got a mirror, and when she looked at herself for the first time, I honestly think she saw an angel. She had this look on her face, and her entire soul just became both peaceful and excited at the same time. I wish I had better attention in Poetry class because then I could truly describe this feeling -- but I hope you get to experience this feeling of joy in your lifetime.... I guess the closest thing I can explain is when I saw Joli for the first time in her life -- the seconds after I gave birth and met my daughter. I think she felt like she "met" herself for the first time, or at least in a long time.

Here are some great pictures of the first few hours. The first picture is a few seconds after the prosthesis was inserted. The second is a few hours after. From what we were told, as time goes on, her muscles will adjust to the prosthesis. There is so much scarring from her surgery (which is normal), and the muscles haven't been stretched nor used in so long. So, as time goes along, it'll be more "normal feeling" for her and for her body.

So, just to make sure everyone knows this -- Joli can't see out of the prosthesis (which is a question we've gotten a lot). It's simply a piece of painted ceramic. She will never see out that eye.

Okay! We're gonna go snuggle now! Of course, more pics to come!

Love, Liza and Jorge and 2-eyed Joli!

AND THE WINNERS ARE...

Well, the raffle drawing is finally here! We went over to the Eschauzier's house, and had such a great time. Our most sincere thanks to everyone who donated prizes, money, time and love to the fundraiser. We knew this was a huge undertaking, but tonight we were truly in awe.... Deirdre estimates that about 4,000 tickets were sold. There were 40 raffle prizes that were awarded tonight, and even a special raffle done just for people who sold tickets.

But, the reason why we didn't know how huge this fundraiser was, was because Deirdre and Chase never -- not even for a second-- had us worry or even think about it. Even tonight, when we tried to do things like contact people or offer to do things, Deirdre wouldn't let us lift a finger. This is probably going to embarass them (because they never look for public praise), but I can only hope that you all have friends in your lives like Deirdre and Chase. I know people like them are rare in this world, and that's a shame. We are so thankful for everyone's efforts in raising awareness of our family's struggle and of retinoblastoma.

So, here are some great pictures we took tonight. I love the one of the "5" kids (yes, one of them is a doll). It gives us a little snapshot of what life may be like in about 6 months!

Enjoy! And, from the bottom of our hearts, thank you to all of you who have helped, prayed for, and supported our family. With friends like all of you, nothing is impossible!

Love, Liza, Jorge and Joli

Joli's 2nd prosthesis fitting!

Well, a happy-tap-u-lous 5th wedding anniversary to us! You know, most people celebrate it with the "Paper" anniversary, or the "Silver" anniversary, or the "Golden" anniversary. Not Jorge and me... we celebrated December 9th as the "Prosthesis/Snow Storm" anniversary. Yup, in true playa fashion!

Joli did so awesome during this fitting. Her first fitting was in October and it was under anesthesia because it involved lots of prodding and poking. This one was amazing, and I can't say enough about how great the Jahrling siblings are -- they are the epitome of professionals. They are amazing with kids and have just a wonderful sense of humor! (complete with an array of "hand farts" and cartoon voices!).

This visit consisted of taking a wax mold of Joli's front lid part, painting the iris, and shaping, shaping and more shaping. She had to have the wax mold taken in and out about a dozen times. The first few times, Jorge and the staff had to restrain her (which, is understandable because it's quite a scary, weird feeling process). But, towards the end, Joli just sort of sat there and let them take the eye in-and-out. They also had this great Mickey Mouse doll that they fitted with 2 prosthesis, and Joli practiced taking the eyes in and out with a special suction cup (something we'll need to do a few times a year).

So, the pictures here are of Joli with the Mickey doll, and a good close up of her red wax mold -- you can see just how much her eye lifts and opens with it in! On Tuesday, that red wax will be replaced with her new, pretty, brown and white eye!

Happy snow shoveling!

PLAYING WITH HER BUDDIES!

Hi, everyone! Joli went to Lucy's day care Christmas party and had such a great time! It was nice timing because her blood counts were good and she was able to be near lots of kids. She jumped right in and played with all her old buddies. Hopefully she can start going back to Day Care in April or so.

Jorge and I have been completely obsessed with Joli's emerging hilariousness! We spend most of our day just laughing and talking about how silly she is, how smart she is, and all the funny things she says during the day. She's at that point where she is completely conversational and oftentimes says stuff that we're shocked she knows. Some funny exchanges:

scene: Jorge trying to put Joli to bed
Jorge: Joli, it's time to sleep. Close your eyes and go to sleep.
Joli: grabbing Jorge's face in her hands Dad, relax. You have to relax. Close your eyes and I'll go make the coffee.

(Whhaaaatt??)

scene: okay, in bed again and Jorge is trying to sleep but Liza and Joli are making lots of noise
Liza and Joli: La la la! Laugh laugh laugh! Fun! Fun! Fun!
Jorge: Joli! C'mon! Go to sleep. Can't you be quiet??
Joli: No. No. shaking her head. I don't think so, Dad.

We're back in chemo again next week, and Joli goes for her prosthesis fittings tomorrow. Hope all goes well!

HAPPY BIRTHDAY, UNCLE PEDRO!

Some cute pics!
Happy Thanksgiving everyone! While we wait.... patiently... for Uncle Paulie to actually email us the pictures from Thanksgiving, here are some cute pictures of Joli recently. There are ones of her with Joli's Song, eating ice cream with her little friend Melina Menghi, building a gingerbread house with Grace and Joanne Diaz, walking Gordon, and wearing her cute outfit of Chicken Little/Hula Skirt/Snoopy Hat. Enjoy!

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!