Doing great!
We've been doing well these past few days. Jada basically sleeps... all the time. So, we're counting our blessings knowing that it could change any day! She goes about 3-4 hours without waking up, then nurses, then sleeps for another 3-4 hours. Joli is a huge help - she helps us change diapers, comforts Jada when she cries (which is rarely happening), and holds her when I need to get something. Awesome big sister! Jorge goes back to work on Monday, so I may be singing a different tune next week, but so far so GREAT!

Jada already went to the pediatrician, and she now weighs 7 lbs 10 oz.. still big and healthy! Joli got to sit up on the table with her, and she was such a pro! After the visit, Jorge and Joli spent a nice afternoon at the movies and saw "The Wild."

Next week, Jada has an exam with Joli's retina specialist at Mass Eye and Ear. Joli also has an MRI coming up at the end of May, too, so we'll keep you posted on those medical things. But, it IS nice to be focusing on the fun we're having with Joli and Jada rather than all the hospital visits and doctors appointments!

3 days; 33 months
Here are the girls at 3 days old (exactly at 1:06pm on Tuesday) and 33 months (Joli was 33 months on April 17th).

Doing well, despite doing 2 hours shifts all night... Joli is at the park with Jorge. Jada, Lola and I are going to find a reclining chair. Yup, nothing like going shopping when you are 3 days old!

The Talusan-Vega sisters meet!
I'm gonna take this quiet opportunity to blog real quick! We're finally home - Jorge is out buying "feminine supplies" (what a good man!), Jada is sleeping, Joli is watching 'Annie', Gordon is trying to get some lovin' time and is snoring at my feet, and I'm sooo happy to be home! Jada is doing great and already nursing well. Joli LOVES Jada! Here are some pictures while still in the hospital of them meeting. Labor, as Jorge wrote earlier, was fast and good! Jorge's trying to get our new blog up and running, but for now we'll use this one for the two girls. Enjoy! Thanks for all your nice comments and for checking up on us!

INTRODUCING JADA!

Jada Grace Talusan Vega, or "Baby Sister" as Joli calls her, was born yesterday afternoon at 1:06PM. 8lbs and 7 ounces! That's a BIG baby.

Liza was AMAZING-- pushing for only 26 minutes because she refused to let up. With every contraction she grabbed me and the nurse and said "Let's go!"

More details later cause we all know what we're here for... the pics!

2 cm and counting...
I'm going to hog the blog today - went to my OB and he said I'm 2 cm. I couldn't feel baby sister moving today - even after I had eaten both breakfast and lunch, so I was sent in for a Non Stress Test (NST). She was, in fact, moving, and I'm having some strong (but irregular) contractions. They sent me home and the OB who was at the hospital thinks it's gonna happen in the next few days (let's not get our hopes up, though). I've taken a new Zen-like approach of "it'll happen when it'll happen" rather than "it's gonna happen any day now!" I'm feeling HUGE, swollen, tired, and heavy.... when they took my blood pressure, I felt like my arm was going to explode from all the water retention I have in my hands!

Will keep you posted!

MARATHON DAY!
Okay, we admit.. we watched much of the marathon from our couch.. in our pajamas... while Joli's runner (and 22,000 others) were making their way through the first half of the course. We did finally head into Newton and actually saw Nirali on the course! Congratulations, Nirali! Team Mass General was awesome and we had such a great time!

Happy Easter and Boston Marathon Fun!
Happy Easter everyone! Joli had a fun and busy day! First of all, we let her pick out her Easter outfit, which consisted of a fuschia Polo dress, ONE lime green sock, ONE faded pink sock, a purple hooded sweater, and purple/pink sneakers. She was adorable!

We also went to the Boston Marathon Mass General Hospital pasta dinner where we met the runner who was running in honor of Joli. She is so great and running the marathon for the first time! I'm feeling some irregular contractions, so Jorge and Joli will be the ones at Mile 20 to cheer her on with our huge signs! Way to go, Nirali! The pasta dinner was awesome because there was a huge awards ceremony where each cancer patient was given a personalized gold medal. More after the race tomorrow!

GOOD EYE EXAM
After being in the hospital for hours, hours, hours, and hours, (we left at 8:30am and just got home around 4:45pm) we are finally home. Joli's eye exam went well. Unfortunately, she wasn't able to get her bone marrow and spinal tap because of the delay in one of the doctor's schedules (which means we need to go back.. again.. and do it), but her eye exam showed no tumors in her socket nor her good eye. Hurray! We'll do the spinal and bone marrow as soon as we can schedule it (oh, joy) and she returns back to Mass Eye and Ear in July (3 months).

Baby Sister.. still snug, although this was the milestone we were trying to get through before delivery. Thanks for checking on us!

PARTY TIME!
Joli went to her friends Leo and Lucky's birthday party this weekend and had a great time! Deirdre and Chase held it at TotGym, which is this great padded fun gym place where all the kids could run around and climb like crazy! Soooo much fun! Thanks for inviting us!

STILL PREGNANT....
Thanks for checking in, everyone, but yes, Baby Sis is still snug as a bug.

Joli had her hearing test today at Mass Eye and Ear. She did experience some hearing loss in her right ear in the highest frequency range. The doctors told us to expect slight hearing loss due to the carboplatin, so we weren't surprised. The good news is that, once she's off carboplatin (which, her last dose was in February) there isn't any residual once it's done. She'll pass any school hearing test, etc., and the MEEI really is a refined, highly detailed test. The actual make-up of Joli's ears are fine (they took pictures of her inner ear!), so the hearing loss is due to the chemo rather than to anything structural.

She did so well during the test, and I'm constantly amazed at how much she's grown and matured over the past 9 months. When I took her for her baseline in September, she was kind of shy, didn't want to do the tests, anxious, etc. Of course, after all that she's been through, this hearing test was nothing. She introduced herself to EVERY person she met, even ordered her own food at the hospital cafeteria, and was talking to people in the elevator. She's also so patient (no pun intended). We waited in the hospital for over 45 minutes, and not once did I have to say anything to her about behavior. She just sat quietly. People are pretty shocked when I tell them she's only 2!

A very strange Bunny Day
The Easter Bunny came a little bit early this year... while playing outside today (which, for the record, it was warmer here today than it was in Los Angeles!), Jorge and Joli discovered a little nest of baby bunnies underneath Joli's slide. Joli actually heard the little bunnies squeaking when she was on the slide, and she made Jorge go check it out. Unfortunately, Gordon (our dog) also decided to check it out, but Jorge caught him just in time. They discovered about 6 baby bunnies in a little nest. To keep Gordon out, Joli and Jorge constructed a wacky (yet functional) cage out of scrap from our neighbor's yard. Very cute!

While the bunnies may be multiplying, Baby Sister is still sitting tight! That's alright with me because Joli has 3 doctors appointments coming up in the next 2 weeks -- 1 of which she needs to go under anesthesia again. She has a pediatrician visit next week (since we started chemo, her oncologist was considered her "primary care" until we were done), a hearing test at Mass Eye and Ear, and then a bone marrow/spinal tap/anesthesia visit the following week. Hopefully Baby Sis will stay put until Joli's done with those procedures because I'd hate to miss all of that.

Later!

Having Fun with Daddy
Jorge has been on school vacation and hanging out with JoliJo. They ventured out to the New England Aquarium the other day and had an awesome time! Joli's been there before, but he said this was absolutely the most fun they've had because Joli is just so much more interactive! Hurray! ( he also said she was the best behaved kid in the E-N-T-I-R-E place... unbiased opinion, of course).

We're on to week 36 now... and feeling lots and lots of mega Braxton-Hicks contractions. Ouuuch.

Joli loves baby sister....who is still in my belly
I'm measuring 35 weeks now... Joli was born at 35 weeks, 4 days; so we'll see when Baby Sis will arrive! Note the Big Girl underwear on Joli!

32 months old!
Joli is having tons of fun with Grammy here! Grammy has completely transformed our house into something that looks organized! Wow! That was a huge job! Also, here's the general announcement -- please, no more toys. We can't hold anymore toys, and we actually started giving lots of them away. No more toys. Toys have taken over our house.... oh, and so have books. Too many. No room.... wanna get her something? How about a little gift for her savings account..!

Grammy has also gotten all the stuff ready for Baby Sister. She's cleaned the bassinette, pack and play, toys, clothes, etc. We're ready for you Baby Sis!

Joli is also well on her way to potty learning. She pretty much stays dry and uses the potty at least 3-4x a day! Hurray! Our goal was to only have 1 child in diapers at a time!

Enjoy!

Clinic visit
Joli went to the clinic today to see Dr. Grabowski, and she did great! They were pretty amazed at how much she's grown (matured) since they last saw her - which, was only 5 weeks ago, by the way. She was super social and seemed to really have fun there. It was also nice to NOT have to check into the hospital after clinic!

Joli and I battled the horrible stomach bug that was going around. Urgh. That stunk... on many levels. Thank GOD Grammy Vega was (is) here to help -- THANKS GRAMMY! She's been awesome...!!! And, Joli is having tons of fun with her!

Somehow, I think we all convinced ourselves (foolishly) that we were "done" with doctor's appointments, and today was a big old wake up call. Joli has been scheduled to go under anesthesia for an MRI, bone marrow, and spinal tap in 3 weeks. Then, a hearing test 2 weeks later (to see if the carboplatin has affected her hearing). Then, shortly after that, she'll be in to have another eye exam under anesthesia (EUA). We'll probably bring Joli about 2 weeks after Baby Sister is born, because Baby Sister is going to follow a similar check-up schedule (oh.. joy). Her port-a-cath won't come out until September -- in the unlikely event that any further treatment needs to occur. We're going to start up our nurses visits at home again to have her port flushed every 4 weeks. We had the option to drive into Boston, but I told them that would be hard either being super pregnant and/or with a newborn. So, we've arranged to have Nurse Pat (yeah!) come again to see Joli.

Alrighty... more pictures tomorrow when she turns 32 months old!

BECAUSE PEOPLE HAVE ASKED...
Okay, here are the pictures of me at 33 1/2 weeks pregnant. Whew.... Just 1 1/2 weeks shy of Joli's gestation period. But, the doctors keep checking me, and so far, I'm still a while away from delivering. But, we're getting ready in case Baby Sister does decide to make a guest appearance early. We're ready for her!

Joli heads back to the clinic this week to have some tests done and to have her port flushed. Gramma Vega is arriving tomorrow to play with her (and staying for a week) so we'll have lots of pictures to post after a week or so.

quick pics
Hi, everyone! I'm writing this as "Baby Sister" is truly kicking me in the butt. We'll just leave it at that reference and say, "I'm really eager to deliver and get this all done with." Ouch. I'm incredibly uncomfortable at this point.

Physically, Joli's doing great. She and Tita Grace spent an entire day at IKEA in the playroom (which, I didn't realize they had, until Grace said, "Oh, they don't. We just played in the children's furniture section -- for 3 hours." Hmm... Free. Creative. That's usually what we expect when Grace babysits. We actually went back to the Childrens Museum for the first time since Joli was diagnosed. We braved it for the first time in 7 months. Joli was a little hesitant at first, but she seemed to enjoy herself after a warm-up!

Okay, Baby Sister's leg has moved from kicking my butt to kicking my rib cage..... But, she's healthy and growing, which everyday, I am thankful for! It's also cute when Joli talks to Baby Sister. Today, I told her she could not watch Go, Diego, Go for the 3rd time today -- so she said, "Mooomm, but Baby Sister wants to watch it, too!" Right before bed, she also says, "Good night, Mom. Good night, Dad. Good night, Baby Sister." Or she'll randomly pull up my shirt to show my belly and say, "Baby Sister, do you want to play with me?" Oohhh....

Will post pics later...
Hi, everyone! Just wanted to do a quick blog to say that Joli is doing well. She developed petekia at one point, but that has gone away. Her hair is growing back (she hates it) and she's "saucy" as ever! Last night, Jorge and I were laughing hysterically because she is really into making funny faces and dancing! Joli also just says the funniest/wackiest things sometimes (most of it is "fresh", but we discipline her and then turn and laugh!).

"Baby Sister" update: So, on Friday we had a little scare. I was incredibly dizzy all day, and ended up going to the hospital because my blood pressure was really high (probably due to lots of stress, little sleep, and not eating well that day.. oh, and my car battery died as I attempted to go get something to eat for lunch). In the end, all is well. I'm offically 8 months (32 weeks) pregnant, and Jorge and I are prepared to go to the hospital anytime in the next few weeks as Joli arrived at 35 weeks. No, still no name for "Baby Sister".

Come back for Joli pics soon!

31 months old~

Sorry these are a few days late --Joli was 31 months old on February 17, 2006.

Okay, in these pictures, just so you don't think Joli has stained teeth -- she actually just finished eating a no sugar added-100% fruit juice popsicle. That's why her teeth are ORANGE! But, I figured it was a good time to get a picture!

Big news: NO MORE GCS-F injections! Hurray! No more injections! No more "little shots!" (this is actually me, Liza, celebrating the fact that I don't have to do this anymore!)

Joli has a fever today. There is a horrible 'bug' going around, and we're praying she doesn't have this version. We're hoping it's just a post-chemo fever. She basically slept from 6pm-8am this morning, stayed on the couch most of the day, napped from 2pm-4:30pm, and is probably getting ready for bed in a few minutes. Unfortunately, Pops Vega also got 'the bug' and has to postpone his visit along with Grammy and Ped. They were supposed to come tomorrow, but with Joli sick and Pops sick, it's too much of a risk. We'll see you all soon, I'm sure!

Joli also saw "Curious George" yesterday (is THAT where she got sick?) and loved it! Jorge and I actually loved the movie, too.

Joli plays with Tita Grace -
Okay, my sister Grace. God bless that woman. She watches Joli 1-2x a week, and they have a blast. She truly is the only person who can make me both want to strangle her and laugh with her - at the same time.

Quick stories: Grace. She lies. Okay, maybe not "lies" but my brother Paul calls it "Gr-emory." That means a "Grace memory" - as in "Grace. That totally didn't happen. That's a complete Gremory." Like the time when I asked her to help me bring the groceries in from the car when I was 6 months pregnant. She never came out to help. When I was done, I went inside the house and said, "Grace, why didn't you come out to help me carry the groceries?" She said, "Huh? What? I was in the bathroom. I guess I didn't hear you." Oddly enough, when I asked Grace, she was totally NOT in the bathroom but rather sitting on the couch in the livingroom. I saw her.

So, yesterday, she watched Joli -- and both Jorge and I are very thankful for that. I came home from a crazy day at work to a relatively clean house (which, I know Grace has been trying hard to clean up the house -- after she and Joli have sufficiently trashed it -- before I get home from work). However, about an hour later, I see Joli's sneakers on the heater in my living room. They are soaking wet.

I say, "What happened to Joli's sneakers? Grace, did you and Joli play in the snow today? Her sneakers are soaking wet!"

Grace says, "No. We didn't go in the snow. I have no idea why her sneakers are wet."

Then, I go to the digital camera to post some pictures.....

Hmmm......

We love you, Grace! Thanks for watching Joli!

(oh, and if you haven't seen Grace in a while, she looks great! She is now wearing size 12 pants LOOSELY! Go Grace!)

AND... WE'RE DONE WITH CHEMOTHERAPY!

Joli's home now from her very last chemotherapy! She's resting because she's really nauseous... she even came home and threw up a-l-l over Gordon, our dog. Yeah, he wasn't too happy about that (and neither are we because now he smells like dog AND spoiled milk!).

We did a video diary of her last chemo round -- starting from the morning at the house, to her clinic, to the hospital, and going down the elevator to go home! She also got lots of presents from the hospital and clinic staff - they are great, and we are so thankful for all their support and help these past 7 months.

So, what happens now, you ask? Well, Joli still needs to go back 1x a month to the oncologist, 4x a year to the retina specialist, and she'll still be doing at least 2 months more of nurses visits here at home to draw labs and flush her port. She'll most likely get her port taken out in late April. We are looking forward to our last 14 injections and eagerly counting them down (at least Liza is... she's tired of giving them, and I'm sure Joli is tired of getting them!)

Congratulations, Joli!! We LOVE you!

Is it REALLY going to be chemo month 6?!?

We cannot believe it's that time ... the last chemo round. I can remember thinking way back in August, "I don't know how we're gonna make it through the next 7 months...." Well, we did it. No, wait. JOLI did it! Go, Joli!

We went to see the Jahrlings to have her prosthesis re-fitted. Joli looked beautiful just the way she was, and it seemed her prosthesis was a little "big." So, today, the Jahrlings shaved it down a bit, and the prosthesis seems to fit even better! She looks so great!

It is always a little shocking to us when her prosthesis is not in - not sure why. I mean, she's spent more time post-surgery with it OUT than IN. But, here are some cute pictures of us at the office. She has a fun little "suction cup" stuck to her nose! Notice the big belly.. I'm now more than 7 months pregnant....



Here is a picture of Joli hugging "Baby Sister". She's so sweet to "Baby Sister" - she kisses my belly and hugs it! The baby is kicking like crazy! Jorge can now see the baby moving .. well, more like JUMPING!


Okay, more after her LAST CHEMO is done! Keep us in your prayers and thoughts!

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.