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!

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!