Just a few fun videos from our Flip Video!

Closing one chapter.... another one opens

Hi everyone! Here is the latest in our medical drama. I'll try to sum it up as best as possible.

For the past few months, we've been undergoing genetic testing for Joli's retinoblastoma. Unfortunately, her tumor was destroyed a few years ago, and the only way to test for her was through blood (not as reliable, but it's all we have to go with). We submitted blood samples back in September '08 and met with the geneticist in November '08. I knew something was up as soon as we got in the room with him. He began by saying, "Unfortunately, the test for Rb hasn't come back yet." So, I'm thinking, "Uh, okay, so why are we here?" The doctor then said that he had some preliminary bad news -- that, randomly, Joli's blood was selected as part of a research sample to test for another genetic mutation called von Hippel-Lindau (VHL). The test came back positive, that Joli has the genetic mutation for VHL.

The geneticist and I agreed that we'd re-send the blood to be tested JUST for VHL -- so, not as part of a random study, but rather as an intentional test for the mutation.

So, we returned to the geneticist yesterday. He said the GOOD NEWS is that Joli's retinoblastoma was simply by "chance" - that is, in her original germ cells, there is less than a 1% chance that Rb started genetically. Rather, it was at some point when her cells were dividing that her retinal cells mutated somehow and Rb was created. That's great news. IF we were to stop the story there, that would mean that neither Jada nor the new baby would need any more Rb screening. It means that they would have just as unlikely a chance of having Rb as any of the general population (which is so rare to have Rb). It means my affair with Mass General Hospital could come to an end - sort of.

The geneticist was kind enough to let me enjoy that moment for 5 seconds, which is what he actually said, "Enjoy this moment for about 5 seconds.....". Happy, Happy, Joy, Joy! No more retinal exams! No retinal exams for the baby and for Jada! Woo hoooo!!!

"Unfortunately, Joli is confirmed to have the genetic mutation for VHL."

So, what does that mean?

Unfortunately, one of the early signs of VHL is... wait for it.... RETINAL TUMORS! So, my brief fantasy about not having to go to MEEI or MGH was over. We have to go back again -- and, the great irony is that we have to go MORE OFTEN than we were scheduled to go when she had Rb!

So, what is VHL -- there is a whole lot of information out there, but I'll try and sum it up in the easiest terms possible.

VHL is a dominant genetic mutation. Not related to Rb. Not related to BRCA. Yup, it's a totally separate genetic mutation.

Now that we know Joli has it, imagine Joli carrying a suitcase that is called VHL. Inside that suitcase are things like, "retinal tumors, brain tumors, angiomas, renal cancer, paralysis, spinal cord issues, headaches, hearing loss". She'll carry this suitcase for the rest of her life. Throughout her life, the suitcase could open. "Joli's body" will reach into the suitcase and pull something out. Sometimes her body will pull out 1 thing; sometimes her body will pull out a few things. There is no timeline for when the suitcase will open - it could open tomorrow; it could open when she's 90 years old. It can also open-close-open-close-open-close all through her life (which is more likely).

The great thing about genetic testing -- especially at age 5 --- is that we now have a "net" around the suitcase. So, before any of those things fall on the ground, we have a little net that will hopefully catch it before it hits the ground.

So, Joli will have regular screening for all of these things for the rest of her life (hence, the fact that we'll still feel like the hospital is our second home!). With this early genetic diagnosis, we can find retinal tumors before they get too large, we'll know about any changes in her kidneys before she develops renal cancer, we'll know to treat "just a headache" as a medical issue.

The next step that we are pursuing is to find out if her VHL was passed on by one of us. In 80% of VHL cases, a parent passed it on. As of today, Jorge and I will have both given blood for testing. If one of us is genetically confirmed, that has implications for both that side of the family as well as for Jada and Baby #3. If one of us is positive, Jada and Baby #3 have a 50% chance of also being VHL positive. If NEITHER Jorge nor I have VHL, then there are no implications for Jada and Baby #3 -- it'll be just Joli's bag to carry. We should find out those results in a few months.

In terms of the Rb, the retina specialist does want to see Baby #3 at 6 weeks, and then likely we won't have to do anything after that since the hereditary risk is so low.

This is the brave face blog going up here, of course. I can't even begin to tell you how much we think this "stinks" (insert multiple words here....). Yes, yes, through all of the mess we've had to go through, we know that "That which doesn't kill you makes you stronger", but for now, we're pretty tired of hearing bad news. Let us wallow in this for a few days.

I hope this serves as a reminder to folks to count your blessings, know that others have it worse in this world, and be thankful for every day of good health you have. Yes, I realize how bitter that sounds right now, and I know that Jorge and I are just so tired of hearing this type of news.

Please continue to keep Joli on your prayer lists or whatever you may do.

Thanks!

Those Darn Tomatoes...

So, quick post to update folks who weren't getting the play-by-play on Facebook.

At lunchtime, went to the dining hall (as always) starving for the latest in college dining. Loaded up my tray with macaroni and cheese, chicken tenders, and yes, a salad. On my way to get a large drink (thank God I didn't make it that far), I slipped on food that some numbskull had dropped but didn't pick up. So, I do my best John Travolta and end up in a disco split in the middle of the cafeteria. Thankfully, I didn't drop my tray.

But, alas, I felt lots of pulling and pain, so I crawled onto my hands and knees, and felt a hand pull me up. Yes, friends, it was Patty -- the dessert lady. I see her every day. She is my saving grace at the end of a good meal with her selection of brownies, cookies, cakes, rice krispie treats, etc...!

Apparently, Patty saw the whole thing and came running. Next thing I know, I'm standing up, grabbing my belly and saying I have to go to the bathroom. It's all kind of a blur, but I end up in there with a few of my friends, Campus Police shows up, and I'm soon being strapped to a stretcher and taken to the local emergency room to get checked out.

All in all, it was an eventful afternoon, filled with TMI from the other patients in the emergency room with me (stories of diarrea, hearing a catheter being removed, etc). A few hours later, Jorge arrives and he convinces me to remove my vital signs monitors and put them on him, and we wait and play the "how low can you get your heart rate?" game while waiting to be seen. I eventually end up in the Labor and Delivery floor where they search and search for a heart beat (yes, they found one.. never thought it would actually be that HARD to find!).

Baby and I are okay. I'm sore. Pelvic and back and groin sore. But, all in all doing fine.

Damn tomatoes.

February is flying by!

Happy 40th Anniversary Lolo and Lola!
Lolo and Lola celebrated their 40th anniversary today! Naturally, we all went out for dim sum and filled our bellies. Then, Lola and Lolo took out Mia and Joli for a nice shopping trip where they got plenty of "bling", matching clothes, and toys. (much to my dismay....). Happy Anniversary!!

We've been busy at the house trying to get ready -- the girls and I have been inspired by the show "Clean House" where they get rid of all the excess stuff in their houses. The girls LOVE the show and it's been helpful as we've donated barrels of toys and clothes!

It's hard to believe how quickly February has come and is almost gone. I was looking back at some pictures to post and realize we just didn't take that many. We did take a good amount of video with our new Flip video, though, so I'll try to get some of those posted soon.

Pregnancy: Whew - as of today, I'm more than 34 weeks. Egads. Joli was born at 35 weeks; Jada at 37. So, it's starting to really come up upon us now! The room is almost totally set up, clothes and blankets are already washed, hospital bag is packed, and it's just waiting now. Work has been really busy, and I actually am pretty sick right now, but we're all excited for baby to come! Bets are still being taken for boy/girl and day of birth! Here are some much over due pictures of my 34 week belly -- I AM HUGE!!




Joli has wrapped up most of her speaking engagements this semester. Here she is just after one of the cancer classes we taught - I think she looks like a NATURAL at the teacher's desk!



More later, I'm sure! Stay tuned... next few posts could include a baby announcement! :)

This past weekend, the girls and Jorge went to NYC and I had some time to catch up on house projects (getting the baby clothes down from the attic, cleaning out the basement, fixing lights/ceiling panels, etc). While it was nice to get some solid work done this weekend, I missed my nutty family like crazy!

Here are some cute pictures courtesy of Pops and Jorge!

Making meatballs with Grammy

After church with Grammy and Pops


At church

Getting ready for bed!

Of course, the girls got home, jumped into my bed, and buried themselves under the blankets, leaving poor Daddy to sleep in the girls' room! Grammy and Pops are coming up here in a few weeks to help us get ready for baby, so we are so excited!

Great few weeks!

Naturally, it's been an exciting few weeks in our house!

I'm not sure exactly what the heck Jada is doing in this picture, but here she is in her own picked-out outfit. Yup, and striking the typical Jada pose...




The end of January marked my 30th week of pregancy. Joli was born at 35 weeks; Jada at 37 1/2. So, I'm guessing to go anytime between then, possibly! It's a whole different feeling knowing this will be my past pregnancy. I've been feeling much better the past few days - no back pain, no pelvic pain - and have really had a week to enjoy just being pregnant. I find myself sad at times when I feel the baby move, simply because I know I won't have this feeling again (probably going to have my oopherectomy within a few months of baby being born). But, I'm filled with joy and excitement knowing that the baby is moving around and growing stronger each day!



Our family celebrated Chinese New Year (in honor of our distant heritage) with Dim Sum. Wait, who are we kidding? We go nearly every Sunday! But, this time, we did teach the girls all about Chinese New Year. So, happy Year of the Ox!







There perhaps hasn't been a more exciting day than the day that President Barack H. Obama was sworn to take office. We celebrated by having orange juice in fancy glasses... The girls were thrilled!


Joli lost her SECOND tooth today! It was quite an ordeal. I believed in the practice that SHE should take it out by herself. Long gone are the days of tying floss to a door or tricking children; we are big believers in having them take ownership over their own bodies. So, Joli got to wiggle around the tooth. It was barely hanging on tonight, so I simply put a string of floss around the tooth to avoid losing it in case it fell out. Joli went to the livingroom to watch tv, and before we knew it, she was shouting, "It's out! It's OUT!" Apparently, she was laying on the floor, went to get up, and accidently stepped on the string! Hurray for Jo Jo!

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!

Christmas 2008

We're back from NY and the girls had an awesome time! Grammy got 2 new turtles that the girls named "Dora" and "Speedy." Pops treated the family to the movies (and, unfortunately, Joli caught him snoring towards the end!). After the movies, we visited Pops -- the original, Titi Ruth and Cousin Jennifer in Brooklyn. It was so good to see Pops again! Jada, unfortunately, was a grump, but she did warm up towards the end. On Sunday, we went to church and Jada decided to rip off her sweater and dance in front. Grammy then made the decision to bring the girls to the playroom!

Christmas outfits for NY - it was such nice weather!




Christmas morning at Lola's House. Joli and Mia pose so nicely.....
While Gavin and Jada's idea of "pose nicely" is acting wacky!
Jorge felt left out....

"Please, little cousins, smile pretty..." were our words just before taking the picture! Just think, next Christmas, we'll have Baby Talusan Vega (a girl??) and Baby Boy Matthews Talusan in the photo!!


Joli and Jada are really into dancing traditional Filipino dances. Here they are watching a video of a dance on tv while they wear their makeshift (aka Pillowcases) dresses.


On a different note, I just found out today that Jada used the potty all by herself! Meaning, she went into the bathroom, got her step stool, put up her own potty seat, peed, wiped, and then just called Jorge to help her get her pants back on! GO JADA!!! (which is great for us because that kid pees like 2x an hour!)

In baby news, here is picture I found online of what our baby most likely looks now.



I'm absolutely feeling baby kick and move around these days. S/he doesn't quite keep me up at night quite yet, but I do feel constant moving all day. I've been sleeping really well, only getting up once a night, and have been feeling so much better than the last few months. I don't seem to have as much back pain anymore, and my exhaustion has settled a bit. Everyone tells me they think I'm having a boy because my belly is poking straight out! We'll see!! I'm 6 1/2 months now, and we expect baby to show up sometime in late March!

We're having a great weekend in Queens visiting the Vega family! I don't have my card reader here, so here are a few pictures that Pops emailed over to us to post.

Pedro with Jorge Luis Vega (the original)



The Jorge Luis Vega lineage ... hmmm... who will have the next one??

Merry Christmas!

It's a very merry Christmas here today! The girls slept last night by the Christmas tree trying to, once again, catch Santa in the act! We put out some yummy treats of cupcakes that the girls baked, some carrots for the reindeer, and, of course..... nachos. (the nachos were Jorge's contribution)

At around 5:50am, Joli woke up and yelled "Oh MY GOSH! SANTA CAME! SANTA CAME!" I guess we were foiled again, and the clever man in red came to our house without waking us up!
She then woke up all of us and we started our Christmas presents - all before 6:05am.

Santa brought the girls a lovely doll house with furniture and two families, a new robe for Joli, and a Cheetah Girls poster. Jorge got replacement DVDs from the ones he had lost on the plane, rock band drum sticks (also previously lost), air freshener, a pink shirt (the girls are learning that, yes, boys can wear pink), and sour patch kids. Liza got the bag that she picked out and some chocolates.

We reflected on the fact that this year was a "budget" Christmas, yet it was the most fun one! We only got what we "needed" and didn't go overboard. It was lots of fun!

Last night, Liza sang at Church and the girls and Jorge had a good time. Even Gavin got in on the Baby Jesus photo.

Merry Christmas everyone!

Making cupcakes for Santa!




Gavin, doing the cool pose next to the Nativity outside of our church


Joli wanted to pose with her sister next to Baby Jesus. She got upset when she realized she was blocking him in the photo!


Jada with her Grover pose - she's already 2.8 years old!


Joli with her Tigger -- she's 5.5 years old!




The children were nestled ... all snug in their High School Musical sleeping bags.



Santa's tasty treats -- he ate everything but the jalapenos!



The big hit -- a doll house!



Liza and Jada in a post-present snuggle. Look closely and you'll see that Jada has tucked the baby dolls into my belly waist-band. Apparently, she wants me to have quadruplets....



Jorge playing some post-Christmas Call of Duty on his XBox.

Oh, the Weather Outside...!

So, quick throw back to August 21, 2005 - we just got this picture from Alonso. This was Joli just after getting her stitches out after her enucleation. Oh, how warm it was then!
And, now, 2 years later.... snow. Cold. Here is Jorge taking no mercy on the little children. He bombarded them with snowballs today!
Joli ducking for cover from Jorge's snow ball throwing! (yes, no glasses... we were very careful!)
Jada - she just jumped around the snow pretending to be a bunny!

Here is a picture of the girls in December 2007 - about this time last year when it snowed! They actually don't look all that different (maybe because they're wearing the same exact clothes from last year!)