Operation Swan Dive and Joli's Rock Star Moment!

Yesterday, we were asked to be the guest speakers at Operation Swan Dive, an event to raise money for cancer research and support. Part of the event was for Jorge to sky dive -- thanks to all the friends and family who donated GENEROUSLY to this event! In 4 days, we were able to raise nearly $600!!





In the afternoon, we got to hang out on the swings. And, in the evening, I gave my speech just after Sister Hazel performed. Joli and I got a standing ovation, lots of people coming up to us at the end, and many many men and women saying they were crying during our speech. The Camp Sunshine folks were happy that people were so touched by our story!

Jorge -- coming in for the landing!


While it's hard for us to give financially to cancer programs (and, heck, we feel like we've given lots of sacrifices along the way), being able to speak about our story and of Camp Sunshine is our way of giving back to a community that helped us so much.

At the end of the night, Joli went to wave goodbye to Sister Hazel (Ken Block) while they were on stage. In the middle of the song, Ken Block came off stage and gave Joli a big hug and kiss on the cheek. She was giddy all the way to the car -- so cute!

My Birthday Weekend!

Hi everyone! It's me, Joli. I had a fun birthday weekend. Here are some of the things we did.

On my birthday, I went to the park with Mia, Jada, Aunt Jenny and my mom. I did a really good job balancing on this beam, climbing, and playing on the slides and swings!


At night, we had my birthday cake and ice cream. It was yummy! The grown ups played rock band.


On Friday, I had a birthday party at my school. And, on Saturday, I had another birthday party at my house. Here are two of my friends from school and my cousins. Jada was asleep and she missed the picture. Nina was with her mommy but I spent lots of time holding her!This is another cake! My parents couldn't find the "5" candle, so instead, they found a "2" and "3" and told me that added up to "5." Sounds good to me!

This is my baby, Nina. Not really MY baby. But, she's my cousin. I love her so much, and Aunt Marie and Uncle Andy let me hold her whenever I want.

Thank you for all my presents and for coming to my parties! I'm so excited to be Five Years Old!

An Intersection of A Life Well Lived and Living Well


A Life Well Lived
This evening, we said goodbye to our buddy, Gordon. Gordon was our "first child", a four-legged one, but one who weighs about 2x more than our daughters combined. Gordon died between Sunday night and Monday morning of last week (July 6-7) while we were on vacation. Gordon's body was brought out of our house before we could see him, and so today was the first day we saw him since we left for Canada. It was a difficult time for us -- struggling between wanting to hold on to our last memory of Gordon, saying "goodbye... be a good boy.. don't make a mess" as we left the house. But now, our last memory of Gordon is of peace.

We held a ceremony this evening for Gordon, and thankfully, most of the family was there. We said goodbye, we love you, and thank you to our loyal companion.

Joli said, "God, please remember to feed Gordon 2 cups of food every day."
Gavin, who is usually terrified of Gordon, said, "Tita Liza, Gordon looks beautiful."
Jada said, "Gordon died. He's never coming back. He's going to go into a box."

Our family then had some quiet time at the end to thank Gordon for protecting us all these years and for loving us. We asked Gordon to watch over us while he's up in Heaven.

Grace had some quiet time with Gordon, too. We know she felt a strong connection to him, and so we wanted her to have some time with him.

After we all said our Goodbyes, we watched as they placed Gordon into the crematory. Approximately 2 hours later, Jorge was able to bring our friend home.



On living.....

This is the eve before Joli's 5th birthday. We spent this evening talking about when she was born, and some of our favorite highlights of her years. We shared some of our favorite memories of her growing up. It's hard to believe she'll be 5 years old....

Joli at 3 weeks old -- her first "Tigger photo" with our buddy, Gordon.
Joli's 1st birthday
Joli's 2nd birthday
The eve of Joli's 3rd birthday
The eve of Joli's 4th birthday

The eve of Joli's 5th birthday

Happy Birthday, Joli! We love you!!

This could be Jorge...

(photo: courtesy of SkyDive Pepperell)

I have been asked to be the guest speaker at the Operation Swan Dive (http://www.operationswandive.org/) event featuring Sister Hazel - a band that I hadn't really heard of, but apparently the rest of the world has (yes, I'm lame). Anyways, I was asked to speak on behalf of Camp Sunshine and the impact the camp has made on our family. Jorge, Joli and I get to have a meet-and-greet with Sister Hazel along with some key Boston Celtics folks! Hurray! Then, we get to stay for the Sister Hazel concert, too, with prime seating, I'm guessing.

So, when I found out all this was taking place at a Sky Diving location, I asked if there was an opportunity for someone to sky dive while there. They said, "Yes! In fact, we're looking for a Camp Sunshine family member to skydive!" So, naturally, I volunteered my loving, wonderful husband...

Do you want Jorge to go skydiving?? Well, if so, he needs to do the impossible -- we need to raise $1,500 by Saturday! I mean, truth be told, they will let Jorge skydive for much less than that -- but it would mean that Camp Sunshine would have to make up the financial difference. Now, wouldn't that just defeat the purpose???

So, get those checkbooks out and give it to one of us or send it to our home address. If you don't know our home address, just comment and I'll email it to you! But, while you're waiting..... write away!

Any donation, of course, is accepted? Got $10? $20? $50?

Shout out to the good people at Flights Travel who donated $300! Guess Lola really wants her "#1 son-in-law" to take the leap!

Fun Weekend!

The whole family went to Marcella Runell and Dave Hall's (aka DJ Trends!) wedding celebration - it was so much fun! Joli and Jada certainly were a hit as the youngest people (by about 30 years) on the dance floor. But, they held their own and tore up the floor!

Jada was doing a fierce dance earlier and just tired herself out. Jorge and I took turns dancing while carrying a sleeping toddler (yes, very responsible of us....). Jada slept through it all, though, and probably loved being "rocked" to sleep!

Miss Joli, on the other hand, danced the night away! She stayed up long after the party was over, too!



At the end of the night, we were all exhausted and even felt old as we slept before the after-party even started!
On the way home, we stopped by the Mystic Aquarium where the girls had a ball. We also went to Neon Chicken -- just about our favorite restaurant on the planet.

Oh, Canada!

Well, prior to the sad Gordon news, our family was having a great time in Canada. We went to Sue and George's wedding (congrats, newlyweds!) and visited lots of our family. Here are some of the highlights:

At Niagra Falls on the way to Toronto

The family took a trip to the Harbourfront Centre in Toronto
The kids had been killing ants, and so we began to call them "God's Creatures" so that they wouldn't do it. Here they are looking at "God's Creatures." We thought it was all innocent until we heard Jada saying, "Okay, God's Creatures. Time to go to bed." And we caught her squishing them between her fingers saying she was putting them to sleep.
When we came home, Joli saw this paw print that the people at the animal hospital had made. So, naturally, that opened the door to talking about Gordon. Joli was very quiet, and then asked if she could remove her necklace (the fancy one she bought in Canada) and place it on Gordon's pawprint. Jorge and Joli had just done a lesson at the cemetary about a month ago, so she knew what "died" meant already. She said, "My heart hurts. I feel sad. Gordon is never coming back."

Joli took this picture of her tribute to Gordon. We also had just found a picture in our car of Gordon that the kennel took last time he was there.
We had Joli explain to Jada what happened to Gordon. This morning, Jada came into my room and said, "Mommy, Gordon died. He's never coming back."

So far so good with the girls and Gordon. I think Jorge and I are having a tougher time with it, though. I almost put food in his bowl this morning.....

8 great years

I'll write something much more poetic later. We just found out that our dog, Gordon, died early this morning.

Gordon was our first wedding present, given to us by Jeff and Lori when I had transitioned from my job at Wesleyan to Friends. Jorge was actually the one who fell in love with Gordon who, as a puppy, was a boundless ball of energy. Little has changed 8 years later - Gordon was still our wacky, yet lovable, dog who we never really showed enough of our own love to. And, of course, faced with our new reality, I am up thinking that I wish I could have pet him more. I wish I could have said a few more nice words to him. I wish I had let him snuggle in our bed.

Gordon was approximately 12 years old, 150 pounds, and had a tail that could leave a bruise on you if you didn't move in time.

Not sure how we're going to break the news to the girls, yet, but here are a few cute pictures I was able to grab online of Gordon.

We love you, Gordie. Thanks for always protecting our family, for being patient when the girls crawled all over you, and for loving us always.


Gordon and Joli - November 2004 just after Joli's hair fell out from chemotherapy

Gordon and Baby Joli - September 2003

Gordon and Baby Jada - May 2006
Gordon and baby Joli at Christmas, December 2003
Gordon sneaking into Jada's bed - December 2007

Last picture taken of Gordon - June 2008

Here's a cute picture Grace found of me when I was about 4 years old (circa 1979) ... Yes, Jada is "mini-me".

End-Of-June Fun!

June is rapidly coming to an end (where is all the time!).

We had Nina, Lily, Marie and Andy over today and had to get the swing down from the attic. Unfortunately, territorial-Jada decided that Baby Nina was NOT allowed to sit in her swing....

This is a picture of Jada exactly 2 years ago in July 2006! Hahha!!
This seems to be the favorite Vega Girls photo -- sitting on Uncle Jorge/Daddy. Looks like Nina is quickly learning the Vega traditions!


Sometimes, Jada sneaks into Joli's bed to snuggle. When I went to check on them, they were all in this weird tangled mess! Joli's arms are trapped under Jada's head and chest, but then Jada is pinned down my Joli's head!


Happy Birthday, Uncle Paulie! Aunt Kirsten and Lola got him an electric drum set.
Cute Daddy and Joli moment in the swimming pool! Joli is going to take more swim lessons this summer with Teetah Grace.

Because appearances by Uncle Paul are so infrequent, he gets to appear 2x in this blog! He shared his birthday cake with the girls and we thank him for the massive sugar high those kids felt....
The Vega grandgirls. Joli LOVES holding Baby Nina. It's all she talks about. Jada misses Lily all the time. Lily, Nina, Andy and Marie live in a brick building, and whenever Jada sees ANY brick building, she screams, "We're at LILY'S house!!!"

Dimone, Jamaiya, Hayley, Brittney, Tacey, Maycie

No, I'm not having sextuplets .... we have bunnies in the backyard again!

See, there are l-o-n-g stretches when Jorge doesn't get a chance to mow the back lawn. So, the long grass is an ideal nesting ground for rabbits. When he finally bought a ride on mower, he disclosed their nest. The girls went out and checked out the babies (6 of them) while also devising a way to keep the bunnies safe from Gordon. Check out one of the babies poking through the nest!

YouTube video

Just uploaded a video that I made a few months ago about Joli's journey with Rb. When I searched for "retinoblastoma" on YouTube, there was hardly anything there. I can only imagine, as a new parent, how helpful it would be to have a video like Joli's to watch.

Summing up her experience in less than 10 minutes (a YouTube limit) is nearly impossible. We do a longer version (15 minutes) when we speak to the college classes, and Joli is on hand to answer questions.

In other great awareness news, because Joli and I have spoken to a few college classes about her experience with Rb and with my family's experience being BRCA +, awareness and education is spreading! I got news the other day that two of the professors are writing a Biology of Cancer book and are including Retinoblastoma in there! Wow!! That's really big news! That means, anyone using that textbook will learn about Rb, and as we know, knowledge is key! They've also asked to use a picture of Joli with her leukoria, so I'm going back and scouring my thousands of photos to find a textbook-appropriate one.

Back from Camp Sunshine

With well over 1,000 pictures from Camp Sunshine (a compilation of lots of people taking pictures and already burning them to disc!), it would be nearly impossible to summarize our experiences here. So, hopefully you can get a chance to ask Joli how it was! But, overall, here are some highlights:

• Of course, Joli was looking forward to seeing Tacey and Mayci, Leah, and Julia, and those were some of the first girls she saw.

• Joli finally got to perform a Hannah Montana song with Tacey and Mayci -- she's been honestly practicing all year for this very moment.

• I found out that Joli WROTE the song that her group performed at the celebration show! She wrote a Camp Sunshine version of "Wheels on the Bus" and even got a "song, written by Joli!" at the end of the performance

• Teetah helped me out the first half of the week (thanks, Grace) and Jorge came and joined us just in time for the celebration show

• Jada and I took out a paddle boat onto Lake Sebago - that was awesome!

• We went to Storyland at the end of camp, and will definitely do a repeat visit there. It was so much fun!

This is Joli with her wish-boat. At the end of camp, the kids "make a wish", send it into the lake, and then blow out their wish. Joli told me that she doesn't wish for anything.....
Jada and I dared the lake and took out a paddle boat. Joli didn't want to go on because she "didn't like the life jacket". Jada did a great job steering the boat while I paddled. It was totally fun! Jada kept saying, "Oh, Mommy. This is just sooo beautiful!"
Jada and Joli were in the same room most of the day (separated by a moveable wall). Jada's age group was infant-3 years old; Joli was in the 3-5 group. But, there were lots of times when they did activities together. It was so nice to have them in "school" together for this week.


Joli and Jada all snug in the bunk bed -- which they stayed in for about 5 minutes. After that, they made me sleep in the awfully uncomfortable futon with them for 5 nights. Ouuwwww....

Joli was older and more mature this year, and she was able to work well with Mayci and Tacey. Both Mayci and Tacey are blind - they both had enucleations from bilateral retinoblastoma around age 2 1/2 (Mayci) and 6 years old (Tacey). The girls have amazing parents and families, and they all encouraged Joli to be with the girls as much as possible. And, Joli was in heaven.... she loves these two girls so much!!
Miss Jada's personality really developed this week. She is straight up sassy-frassy. I feel like Jada's vocabulary soared this week, and she was so much fun (and exhausting....). Jada is obsessed with bugs, and and she kept following around every single bug (which, there are thousands of them in the woods of Maine). Prior to this week, though, Jada would say, "I kill bugs" and stomp on them. We finally got her to say, "Ooh! Little bug! I won't hurt you. Go back to your Mommy." Then, she'd say, "I won't kill you. You are God's creeeetuuures."


Best friends... Joli didn't interact much with Mayci and Tacey last year. But, after camp last year, she couldn't stop talking about Mayci and Tacey. This year, she was old enough to hang out with them, and the three of them were pretty much inseparable. By the way these girls run around and are fearless, you'd never ever ever know they were both blind. Their parents were really great about teaching Joli how to guide them, how to introduce them to her sister, etc. Joli got to learn that she had to announce her name when she showed to see them. What was so cute was that Joli has been feeling bad about her hair -- she says it's too big or it's too puffy, etc. But, Tacey and Mayci said that they know it's Joli when they can feel her hair!! So, by the end of the week, Joli was loving her hair and would say, "Mom, Tacey and Mayci know it's me, Joli, because I'm the one with the curly hair."


In addition to the kids all developing more self confidence around having retinoblastoma, having prosthetic eyes, etc., also comes all the "Stupid Human Tricks" that they share. One adult (who had Rb as a kid, and then went on to have an Rb son) told the kids that he used to take his eye out, stick it to his forehead, and go out for Halloween. Joli, naturally, thought this was hysterical, and went back to our cabin and tried it.... nice.

Check out this great video of Joli (and watch the cool moves she has!). Listen at the end -- she gives a shout-out to her Texan friends by closing with "Yee-haw!"

You'll hear at the end of the camp song, the counselor says, "Written by Joli!"