The Dance Off

This morning, the girls decided to storm into our bedroom and proceed to tell Jorge that he "got SERVED!" Not one to back down from a dance challenge -- even at 6:30am -- Jorge and the girls had a serious Dance Off. I think we agreed, unanimously, that the girls won.

I'm not sure what Jorge did at work today ... but his Facebook page alluded to an upcoming Dance Off Rematch. 

He came home today from work to challenge the girls. Yes, to challenge the girls. 

Thankfully, we got it on tape.

PLEASE, tell us who you think won....

Fun Family Vacation!

We didn't really plan it this way, but this weekend turned into a really fun family mini-vacation. We had to take a trip to Connecticut (about 2 1/2 hours away!) to pick up a painting that my office purchased. Because of all the snow, we decided to stay in a hotel on the ride home. Thankfully, the hotel had an awesome indoor pool and hot tub!

The minute we got checked in, the girls got into their swimsuits and took off for the pool. We then walked to dinner where the kiddos were treated to their favorite meals -- steak and fries! Went to bed, got up around 6:30am, had breakfast, and it was back to the pool! After check out time, we headed to the aquarium and the gals had a fun time touching the animals and wandering around the observation tanks. Then, it was home again... to the snowy driveway.

It was a great family get-away!

Joli at her favorite exhibit -- the touch tank!

Swimming in the pool! Joli was jumping into the pool and doing really well swimming. Jada was fearless, and we often had to remind her that we needed to HOLD ON to her!

Mama, baby belly, and Jada taking a relaxing dip in the pool. Joli taking off to swim in the 3 feet section.

Joli taking pictures of Jada in the car - it was a long car ride over 24 hours!

Oh Jada!

Here's a funny blog entry that Mary put on her site of Jada. Hahah!

Whirlwind Days!

It's been a very busy few weeks here in our house. First, we want to wish everyone a Happy New Year (a month late)! We're excited about all the things to come this year!

Happy New Years! Jada and Daddy waiting for midnight!


Roughly 6+ months pregnant here with my favorite accessory - Jada's face


Loose tooth! Loose tooth! Joli discovered she had a loose tooth on Saturday, January 10th or so. She has been wiggling it all week!

We went and had a day at the doctor's today. It was exhausting, but we're glad we got it all done in one day. Joli met up with her friend Julia, also an Rb survivor, and that helped to pass the time.

Joli at the Jahrlings for her eye polishing. She goes 1x a year. The doctor told us that we may want to explore redoing her implant in a few years since he feels her prosthesis points "down" a little bit. It doesn't look like much to us, but to an expert and perfectionist, he would like to see it adjusted after she is done growing. Joli dropped off a few of the coloring books Teetah Grace wrote and they loved them!


After the Jahrlings, we had an hour or so to pass. So, we went to get some hot chocolate at our favorite little place (aka the Hospital lobby), and went upstairs to where Joli used to receive treatment. She didn't really remember the place until the elevator opened and she saw all the cool murals and toys. We were so surprised that Joli's drawing from her last day of chemo was still up there! They still kept Joli's drawing up in the playroom -- even 3 years later!


After the playroom, we met up with Julia and went to our appointment with Dr. Mukai. Joli was pretty mad about getting her drops this time. I think we may go back to doing the slow release ones at home. But, we did the fast action ones at the office (which, I'm told has a weird sensation feeling). It took her a while to calm down again, but once she did, she was fine. Here she is chilling out waiting for Dr. Mukai.

It's never really quite easy when we go to the doctor's office. We were told that Joli is doing okay and that we'll likely stick to one year visits, until we started talking about her genetics results. We're still waiting to hear from the lab about her Rb results, but the doctor did want to talk about her VHL results. We sent her blood to get retested (which we'll hear back in February or so). Dr. M wants us to have it done again in Boston since the VHL gene was isolated at Dana Farber and that one of the best treatment places is at MGH. I also thought that VHL doesn't manifest until adulthood, but Dr. M says that retinal tumors can develop as early as late teens (oh great). So, we're just now going to wait on the results of the re-test. The good news is that she is getting checked every single year for tumors, anyways. So, if something manifested, we'd catch it. But, we'll cross that bridge, I guess, when we get to it.

For Jada, I asked whether or not he wanted to keep screening her. She hasn't been seen since 18 months of age. He said we'd wait to hear the genetics results.

For baby#3, we, too, should wait for genetics, but he at least wants to see the new baby after delivery. So, at 3 weeks, we'll bring Baby 3 in for an EUA. Oh, joy.

I always believe that with darkness comes light....

When we got home, Joli decided to wiggle the loose tooth and.....

See the hole! Loose tooth is now incoming tooth! Hurray for Joli!

She came running out of the bathroom saying that she had wiggled the tooth and it came loose (it's about time!). Now, there is a lovely hole at the bottom of her mouth. She's adorable!

Jada holding the prized loose tooth!


All in all, it's the story of our lives -- wait, hope, wait, hope, dishes, coffee, get dressed, wait, pay bills, watch tv, wait, hope, go to work, eat, sleep. This whole cancer/medical journey is a part of our lives. It's as much of our lives as brushing our teeth. It's our "normal."

So, we'll keep you all updated! Thanks for reading!

Ben Underwood - keep him in your prayers

Just after Joli had finished treatment in 2006, Jorge and I were watching the Discovery Channel and came across a beautiful story about a young man named Ben Underwood. The story was about his use of echolocation to "see", as Ben was blind in both eyes. For us, the story was more about a teenager who had survived bilateral retinoblastoma and who refused to be disabled. Ben served as an inspiration to our family. His mother, Aquanetta Gordon, was also featured in the show, and I felt like I knew her. Every word that left her mouth had articulated just how I felt as a mother to an Rb survivor.

In the past weeks, Ben's cancer returned. He had been "cured" and considered cancer free for more than 10 years. Ben developed brain and spinal cord cancer. Doctors have given him only a few more weeks to live. Ben's story is here.

This is why it makes me so mad when people try and tell us to "get over" Joli having cancer. I sometimes refer to Joli as "having cancer" because we still live the life of a cancer family - going to the doctors for Joli, going for Jada, and now we'll have to start going every 3 weeks and 3 months for the new baby. For the next 2 years, even the baby in my belly will remind me that we are a cancer family.

People don't often understand the lasting impact of Joli being diagnosed. Every headache needs to be treated as if there may be pain from a tumor. Every "my bones hurt" needs to be treated as if cancer cells found their way into her bone marrow. While we do treat most of these with just regular old love, Tylenol, and rest, it never leaves my mind that "maybe this is a new cancer."

Ben's story proves it. While his mother raised him to be brave and move above his disability, his story reminds us that cancer families can never be the same as families who have never had it -- even 10 years later.

While Joli's cancer doesn't paralyze us with fear, it does make us ask ourselves questions that others never have to even entertain.

Please keep Ben Underwood and his family in your prayers - that he may have a peaceful journey to Heaven.

Jada's Day Out and Joli's Tooth Out (almost)

With Gavin in Cal-i-foy-nia, Jada had a solo day out with Teetah Grace. Jada is so possessive about her alone time with Teetah. They called me from a lunch place just 1 minute from my work. When I talked to Jada and told her I might be coming to join them for lunch, she flew into a fury! "NO, MAMA! Just ME and TEETAH! NOT YOU! I DO NOT WANT YOU TO COME!"

She couldn't have been more clear.

When Grace said, "No, Jada, let Mama come. We can all eat together", Jada screamed "NO! I just want me and TEETAH!"

Fine. I got the picture.

She and Teetah ended up having a great time.

Starbucks date for some steamed chocolate milk


Teetah and Jada at the museum - Jada wanted to be She-Hulk

So, of course, Grace let her ....

We're also waiting for Joli's first tooth to come out! During dinner, she jumped up and said, "MOM! My tooth is loose.. my tooth-isth-loosth..... my toothistllooooth." And, sure enough, her tooth is loose! Can't believe she is already old enough to have a loose tooth!

We can already see the grown up tooth poking through behind the tooth (the baby tooth is leaning so far forward already). Will post pictures when that hole-in-the-smile comes through! Stay tuned!

Best of 2008

Just wanted to highlight some coolness from 2008:

Joli ...
1. continued to have great eye exams
2. learned to read, can name all of the 50 states and 7 continents, and learned to play the recorder
3. had her first music recital
4. learned to ride a scooter
5. learned some pretty advanced math

Jada ...
1. learned all the words to many of the Jonas Brothers and HSM songs
2. went to her first movie at the theater
3. learned how to use the potty and got rid of her diapers!
4. went to Canada!

Liza ...
1. rediscovered music through orchestra and church
2. was honored with a big diversity award
3. jumped into the blogging world professionally
4. founded a retinoblastoma organization
5. got pregnant!

Jorge ....
1. saw his comic book become a reality
2. self-published a few more books
3. taught at a writer's organization
4. said 'goodbye' to the old car and bought a new car
5. met some cool celebrities and became one himself

This year, we also said goodbye to Gordon, our very first child. We miss you, Gordon!