Camp Sunshine was a blast! here is Joli practicing her balance!



The camp has a great little walk down to the waterfront. Here is the bridge we have to cross to get there. They have fake animals in the woods that Joli could "spy" on her walk to the waterfront.


During the day, Jo was with her counselors (and a large group of children). She loved putting on a puppet show for them!

Joli chillin' on her bunk bed at Camp Sunshine


Camp Sunshine is for the entire family -- so even Jada got in on some action the first few days. Here she is with Mike Wachowski from Monsters, Inc!


Jada sportin' her Camp Sunshine duds!



Our little buddy Canyon! He's one of Jo's best friends!


A picture of just the Retinoblastoma kids at camp


Where to even begin?

We just got home from the most incredible time at Camp Sunshine in Maine. Camp Sunshine is a place where kids with cancer and their families can go and enjoy life! And, that is exactly what we did! All the kids this week were diagnosed with Retinoblastoma -- some had 1 eye; some had no eyes. Some had chemo. Some had radiation. Many had both. I wish I could truly put all of this down poetically, but the best way to see the result of Camp Sunshine is to see the confidence in Joli's eyes and hear the wonderful stories in our own voices (maybe I can get Grace to put this all in better words for me!).

Some quick anectodal stories:
Usually when Joli meets a little kid (supermarket, park, party, etc) she says, "Hi, I'm Joli! Do you have a special eye?" To which some kid usually looks at her like she's crazy or they just run away. Well, imagine, we roll up into Camp Sunshine, Joli sees a group of little kids and she says, "Hi, I'm Joli! Do you have a special eye?" and every single kid says, "YES! I have a special eye...which one is your special eye... I wear glasses... I like your glasses...." and the conversations just go on and on like that.

Joli met a few kids and adults who were completely blind - lost both eyes to retinoblastoma. She met one little gal who came up to her and began feeling her face. Joli looked a little nervous at first, then said to the girl, "Are you blind? You can't see, right?" and the little girl said "Yeah, I'm blind. What's your name....?" From then on, that little girl was one of Joli's best friends (they even went swimming together!)

Joli met a few kids in the hospital when we were in treatment, and she saw those kids at Camp Sunshine! One night, she turned to me (as she was sleeping in one of the bunk beds) and said, "Mommy. Canyon is my friend. He visited me in the hospital. I love my friends. Good night, Mom." And that was that.

One of the hardest things to do was to leave Camp. Camp Sunshine was a powerful experience for our entire family. While the kiddies (including Jada!) were watched by volunteers, the parents also got to have some play time! IT was like WE were campers, too! We did some fun games like ropes courses and challenges and also had serious discussion groups. Some of the groups were educational (latest research in retinoblastoma) and some where emotional. All were life changing.

As we were leaving, Joli put her little hand in mine and said, "Mama. My heart feels sad." "Why, Joli?" "I don't want to leave my friends. They are just like me."

I'm guessing no one from Camp Sunshine is actually reading our blog, but we are forever grateful for the gift you gave us this week. Thank you to all the volunteers, to the 13 year old gal who raised the money for us to GO TO CAMP!, and to Joli's special counselors - Rachel and Melissa. We will never forget this!

Rock on Joli. Rock on.

Hey! Hey! hey! Someone is 32 today....
Happy Birthday, Jorge! Thanks to everyone who came to celebrate with us. It's been party weekend over here!

We started with a band face off in the living room.....

Awesome cake and ice cream
Rocked it birthday style with Spidey and friends

Congratulations, Lily! Lily's baptism was today and we all got together from some high quality family fun! Jada spent most of the day screeching whenever anyone came near her, but she seemed fine once we got into church! So, here are some great pictures of Jada NOT on my hip, but rather hangin' with the fabulous Titi Minnie and Grammy!

Jada with Titi Minnie

Grammy with Jada

Joli in the awesome playroom at the church

Here is a great picture of Mia and Joli at Scooperbowl last week, too!

Whew! We've been so busy lately!
We're just recovering from a great week in NYC and a wonderful reunion event at Conn! We loved it! Here is an adorable picture of the girls walking the same walkway that Jorge and I walked down, oh, TEN years ago!

We're totally off schedule with the whole "monthly" pictures, but here is a great picture of Joli with her 1970's skater girl hairdo and her famous Tigger doll. Jada, on the other hand, was not interested in holding her Grover -- oh well.


Here is a cute pic of the girls just randomly playing. They are the best!
So, on the car ride home today, Joli was making me quiz her on Spanish colors. She got every single one right! WOW! The other day, I found some random flashcards of pictures and alphabet and just showed them to Joli "for the heck of it." Well, Little Miss Jo takes the cards and starts flipping through them saying "A is for Apple; B is for Ball..." and she proceeds to go through all 26 letters! Again, getting them all right.. woah.

Thanks to Cousin Mia, Jada has now added the word "bum bum" to her vocabulary. Fantastic. Jada is an eating machine. She easily eats at least 2x more than Joli at any given meal. And, then she yells for more...

Bossy girls. I love them.

Thanks for a fun time in New York, Grammy, Pops and Ped!! Can't wait to see you again!

Here are some great pictures that Pops sent of Joli's day with them! Looks like tons of fun! Joli went to the hairdresser for the first time ever (although, her "hair" is really only 1 year old!). She said she cried a little bit, but I do see a lollipop in her mouth, so she can't be that unhappy! Thanks for sending these, Pops!




Having a great time at the beach!

Joli's first haircut! Look how long and straight it is!
Hangin out in Pop's Office

I miss the girls....

Jorge hasn't 'guest blogged' yet, but I think it's because he was up alllll night with Jada. We can cut him some slack, I guess.

Me, I'm miserable. I miss my girls. This is the very first time that I have been separated from Jada -- I've slept next to that baby for 399 consecutive nights, so I'm missing her like crazy. I also miss Jo terribly -- it's amazing to talk to her on the phone. She's such a little kid. Jo was very comforting as we were pulling out of Lola's driveway (I was crying about Jada) and she said, "It's okay, Mommy. Jada loves you." Then, when I was leaving Joli at Grammy's house, she said, "Mommy, I love you forever." Usually Grace is here with me when I travel to distract me, but even she's not here this time! Booo hoo!

awww......

Jo is gonna get her hair done with Grammy today! Here's a sneak preview of the major conditioning that Grammy did to her hair!

Enjoy!

We had a great Memorial Day weekend -- lots of sunny yet breezy weather! It was perfect! Here are some cute pictures from today. It seemed like National Geographic at the house today -- the girls found a woodland baby duck that was completely misplaced and a big bunny in the backyard!

The girls also went to see Shrek, courtesy of Jenny! Thanks Aunt Jenny!

Joli and Mia are getting really fresh. Here are some of their most famous quotes:
"And, your point is....?"
"Yes, your Majesty."
"Let's get Jada, that little muskrat!"

They call Jada the "Little Muskrat" because she has developed a habit of making this screetching noise when she's bothered .. it sounds like "eeekkkhhhh!!" She gets really mad when you mess with her! Jorge's in for a treat as he gets to have Jada time this week! Jorge will be the "guest blogger" for the week and I'm sure he'll have fantastic stories to tell! Can't wait to read them!!

This is Quackers -- the baby woodland duck we found in the front yard.

Rare family photo!
Awesome photo of the coolest peeps ever!

"Do I look like a 'muskrat' to you??"

This is Mia plotting ways to get Jada in trouble.....

Our first Cousin Sleepover!

Joli and Mia had their very first big girl sleepover at our house! What started out as "Hey, Liza, can you watch Mia until 7:00pm" (nice one, Jenny and Jon...!) stretched out to an overnight event! Mia did awesome, only whimpered 2x to go home -- not a full out cry, but more of a "I think I'm supposed to be sad" whimper. Pretty soon, though, the girls were in full out sleepover mode -- even pretending to be asleep when I checked in on them, but really they were playing My Little Ponies! I think the sleepover threw off Joli, too, as she ended up in our bed halfway through the night. I thought Mia would wake up freaked out, but at 6:00am, I heard giggling in the livingroom. Yeah, it was Mia -- playing with Gordon. What??

Congrats, Mia, on your first night away from your Mama and Dod. Great job! (Oh, and, I think she even made it through the night with a dry overnight diaper!!)

Was going through some pictures and found this rare family photo (taken by Mia) of our family! Enjoy!




ps.. scroll down to the "cute" picture of Joli and Jada in the red stroller by the Cinderella castle. Enlarge it and look and Jada's mischevous face - oh, we're in for trouble!

"Do I look like a happy princess to you?"


"Tee hee hee.. with all this excitement, do you think anyone will notice that funny smell coming from my diaper?"

"You can't catch me, Joli! I'm outta here!"
"See, Tita Mari! I'm NOT grumpy!"

"Cinderella's carousel rocks!"

We're Home from Disney!

We just got back from Disney and had soooo much fun! Thanks to Tita Grace, Lola and Lolo for inviting us to tag along. Unfortunately, Jorge couldn't join us and we missed him tons!

Joli, Jada, Lola and I had fun at Disney world -- Joli pretty much rode every single ride that she possibly could ride. The girls loved the Main Street parade, especially, because it had all the princesses!

The girls and I also spent some time at the pool, and even with SPF 50, Joli still got incredibly tan! The girls were also so good on the airplane. Joli 's at a really fun stage where she can just converse all day --she's a great companion! She talked all about meeting Peter Pan, Jasmine, riding the roller coaster 2x, and going on Small World!

Can't wait to go again!!!

DAY 3 OF Retinoblastoma Awareness Week!

Please go to Grace's blog to read stories of amazing Rb families. She has guest bloggers each day and the stories are so beautifully written. Joli is just one of the hundreds of children each year affected by Rb. Go to www.gracetalusan.blogspot.com

Grace, on behalf of the Rb community, thanks for allowing for such a public forum for Retinoblastoma awareness. We are all so thankful for your outreach, and support. On behalf of our family, "WE LOVE YOU!"

It's Retinoblastoma Awarness Week!

Surf on over to Grace's blog to read from guest bloggers who have been affected by Retinoblastoma. Grace has been incredibly active in supporting the Rb community. She's been on the listserves, wrote a coloring book for Rb siblings, and has, of course, been there tirelessly for our family. Thanks Teetah Grace! Now, go to www.gracetalusan.blogspot.com to read from the guest bloggers there!

FUNNY PICS OF JO AND MIA!

These were taken back when we referred to Mia as "Mina-Mina" and when I would joke about having 2 kids... ha haha ....! This was taken just before Mia moved to Hawai'i in Feb 2005!



As I was looking through these pics, the below one of Joli shows her with the retinoblastoma tumor already there. (you can clearly see the white glow in her right eye). Honestly, we've been pouring over pictures since Jo was diagnosed, and this is the first one I've found from this far back. When she was first diagnosed, we kept trying to figure out just how long it had been there. This was taken in Feb '05 and the tumor is already very large -- large enough for us to see it in this picture really well. I was debating whether or not to put this in the blog. This pic was taken in February 2005 -- a full 6 months before Joli was actually diagnosed.

Urgh... I'm having a very sick feeling in my stomach right now.... I guess I'll never quite get over the real gut wrenching feeling of the whole retinoblastoma deal. Mother's guilt? While I know my brain says "it's not your fault", I'm not sure I'll ever lose this sick-to-my-stomach feeling whenever I see an old picture with the tumor. This"sick" feeling is my anger at the tumor. I see the tumor ... and I hate it. I almost never use the word "hate" -- except for this.

This upcoming week is World Retinoblastoma Awareness Week. Also, news just broke out about Derek Fisher's (Utah Jazz NBA player) little girl who was just diagnosed. Prayers are with their family, too.


Well, in the end, of course, we all turned out just fine - and Joli is stronger than I could ever hope her to be in her life. Look at these gals -- they couldn't be happier! Gotta love these little buggers! Peace and love!

So much fun at Mystic!
We ventured down to Mystic again this weekend. It's quite a hike, but well worth it! Here are some great adventure pictures:


*My, how quick they grow! I bet this'll be a regularly occuring picture throughout their years!



* Petting the starfish and the crabs in the touch tank!


Jorge taking care of the three gals!

Total wackiness right before the seal lion show!

JOLI IS OUR PINT-SIZED CELEBRITY!

Hi everyone! Joli was chosen as the feature for World Retinoblastoma Awareness Week (May 13-19)! Her story is on the Eye Care Foundation website (www.eyecarefoundation.org). This is the same foundation that published the "Joey's Eye" (aka Joli's eye) coloring book -- co-written by Grace -- to help siblings of Rb kids understand the process.

Thanks to Hayley from the Eye Care Foundation for choosing Joli for this great honor!

Jenny made an interesting comment in an email to me today: "I guess it's easy for me to "forget" what Joli went through because we were so far away! It's crazy, but I saw her in May in (Los Angeles) right before she was diagnosed and then didn't see her again until the following July when the only traces of what she went through was her port."

For some reason, blogger had deleted all the photos prior to April 2006, so many of you who check this blog never saw the pictures of Joli during treatment. I'm re-posting them, not to be depressing, but truly to 1) remind us of how far Joli has come and 2) to honor World Retinoblastoma Awarness Week in hopes of helping other children out there treat Retinoblastoma early.

This is a photo of Joli with the tumor in her right eye. She was dilated from the doctor's appointment that morning, so it's very clear to see. The gigantic white circle is the tumor. By the time we caught it, the tumor had destroyed her retina, and enucleation was our only option.
Here's Joli recovering after surgery wearing a pressure patch on her enucleated eye. Don't worry.. that red stain is from her fruit punch. After her surgery, Joli only wanted to be "held by Mama" and "drink juice with Daddy."

Quick recovery -- Joli was outside playing the very next day! Her socket "itched" and we remember her crying in her sleep, but overall, Joli's recovery was very quick!

Post-surgery, the eyelids are sewn shut to protect the socket.

Joli's first stay in the hospital for chemotherapy in September. Here she is (she looks so small!) getting ready for her first round of chemo. We would repeat this 7 times. Typically, I brought Joli to chemo on a Thursday AM, stay overnight, and then Jorge would come on Friday PM to stay overnight. We were usually discharged on Saturday afternoons.

Sometime between her first and second rounds of chemo, Joli's hair fell out. This is a picture of her at Halloween with "fuzz" remaining on her head. We wore a lot of hats over the course of 7 months!

Of course, Joli is doing really well now! I'm kind of bummed out that the pictures from the earlier blogs are gone, but I'll try to post some as they become more relevant.

-Liza