Surgery Day

Joli is home after a long day at the hospital. It was really quite emotional for me, and I'm sure for her, too. The last time we were in that same pediatric surgery ward at MGH, Joli was only 2 years, 2 months old and getting her port-a-cath placed in to begin chemotherapy. I just remember being in the waiting room and thinking, "Oh my God. My child is going to begin chemotherapy." We had already "recovered" from the trauma of her enucleation, and the news of chemotherapy came as such a surprise to us. A year ago, we brought in a toddler who was terrified of standing on a scale to be weighed, was petrified of "drops" and "masks", and who didn't even want to go near any doctors.

This time around, for better of for worse, a very confident, older Joli walked down the hall, greeted each and every single nurse with "Good morning. I'm Joli. What's your name? What are you going to do to me today?" I remember vividly the nurses explaining things to Joli in child friendly terms like, "We're just going to give your arm a little hug". A year later, Joli replies with "Yes, I know. That's for my blood pressure." When the nurse put on the oxygen reader onto her toe, she said, "This is my little orange light and bandaid to place on your little finger." To which Joli confidently replies, "Yes, I know. That's so you can check my oxygen when I'm sleeping."

I remember the first day we finished chemotherapy and we were leaving the hospital. Our little 2 year old Joli grabbed her Dora rolling suitcase and insisted she walk her self all the way from her hospital bed to the parking garage (quite a walk,I might add!). This time, Joli insisted she walk herself into the operating room. The nurse wasn't really sure how to react because I think it's pretty rare she gets a 3 year old (or any kid) to walk willingly down the long hallway, past all the surgeons looking as intimidating as possible, into the surgery center, and into any operating room. But, not our Joli. At one point, as we were walking to the OR, I had to choke back tears. She was walking a few steps ahead of us, and then turned and said, "Where's my Dad? I'd like to hold his hand. " So, Daddy and Joli walked hand-in-hand to the OR. I almost felt as if she was trying to comfort us rather than the other way around. There are a few moments in life that you never really forget. I know I'll never forget that one....

Also, as every good nurse says to us whenever we bring Joli in for anything, they always say, "Don't worry. She probably won't remember any of this." They are wrong. Completely wrong. Joli can tell you every single minute detail of every single experience she has had. She remembers , better than we do , the names of almost every nurse she has ever had (or at least every conversation she has had), her different roommates from the hospital, certain quirks that each doctor has, and even the anesthetic flavoring she's had on her masks (banana last time, bubble gum this time).

Well, to make a very long and very emotional day short, Joli is now resting in bed. She has a few internal stitches in her chest, a huge bandage covering her incision, and some soreness. Her recovery shouldn't be too bad, though. All week, she's been anxious about having her Port removed, but she does understand that removing the port means no more chemo.

It's late. I'mgoing to bed to snuggle my brave, incredible, wonderful 3 year old survivor. Yet another chapter -- or milestone -- of our crazy year has been achieved.

Daddy's Girl the day before surgery

On the way to MGH!

Joli's oxygen levels were low during recovery. She wasn't a fan of me sticking this tube in her face....

After a few hours in the recovery room, Joli was feeling a little bit better. Jorge even got her to "flex her muscles" and show off her sans port chest!

* Jada says, "You mess wid my sista, you mess wid me and my entire cribbb!"

Joli's Surgery
Hey everyone! Please keep Joli in your prayers as she heads into surgery tomorrow morning. She's having her port-a-cath removed! Hurray!

While the rest of us went apple picking, I guess Jada went "bird watching". The best part about this picture is that it is entirely NOT staged!!

CANCER FREE MARI!!
Hi everyone! We just got the news at 8:30am that Mari is officially cancer free! Her pathology reports came back, and her tumor was completely dead (not re-generating) and her lymph nodes were clear! This is great news -- especially because her doctors thought she would need to do A FULL YEAR MORE of chemotherapy! This of course interfered with her "normal life" of living in California, working next semester, and being a mommy and wife. So, hurray for Mari! I know that all of the people praying for her has made this difference, and we're all very thankful for your support. While I'm personally bummed out that Mari will be returning to the "west side", I know her good health is exactly what we've all been praying for.

Mari does have radiation still to tackle over the next 2 months, so please continue to pray for her strength during this time. She is also still recovering from her major surgery, so please keep her in your prayers for that, too.

YIPEEEE!!!

Halloween Fun!

We had a fun time trick or treating with the cousins! Even Jada got in on the action! Enjoy little Darth Vadar, Little Flying Unicorn, Senor Vampire, and The Red Hot Chili Peppa!

These are the blankets that our friend Tyra made for the gals.

Happy Halloween!

What's been up!

This past Wednesday, Joli, Mia, Tita Grace and Lola all went to see The Wiggles Live! While there are no pictures, I hear the gals had a great time! I had to work late that night, but Joli woke me up at 4:30am and wanted to tell me all about the concert. It was so cute!

Joli turned 39 months old, and here are her tigger pictures for the month! Check out the HAIR!!! This past Sunday, we went to the clinic for some arts and crafts - that was totally fun! We even saw one of our old roommates (he has leukemia) and he looks awesome! Very healthy! Joli had a great time seeing all the nurses and playing with the other kids. She rocked out with the music therapist, too!

Jada has been kind of sick lately -- just the common cold. So, we waited a few days until she had her REAL FIRST 'BITE' OF FOOD! Hurray, Jada! Here are some cute pics of her eating rice cereal for the first time. She completely was not interested at first, but she eventually was grabbing for the spoon. We also celebrated Jada's 1/2 birthday with our "1/2" birthday cake tradition! Of course, she was asleep through the whole thing!

Jada's first taste of "solid" food - didn't like it at first, but she soon realized how yummy it was!

Jada turns 6 months old -- here is her Grover Picture!
Mari has been doing a little better. She had to stay in the hospital a bit longer than expected due to a high fever, but JP kept her entertained... with all his stories.. and talking...! Good man!

Shout out to Mari!

Hey, Mari! We're all thinking about you today! We love you!

"It'll just be a little shot...."

Trick or Treat at the Zoo!
We had an awesome time at the zoo with the fam and the "downstairs neighbors." Marie told us of this whole trick-or-treating event at the zoo, so we all headed down there -- complete with 2 little "orange pumpkin" babies and 1 Darth Vadar! It was so much fun! Throughout the park, there were "trick or treat" stations. The best part of the day was when "Darth Joli" encountered a little boy dressed as Anakin Skywalker.... and as soon as they saw each other, the little Anakin Skywalker pulled out his lightsaber and Joli drew hers as well! It was hysterical!!

We've been to the park about a dozen times, but this time Jada got to really see it! She went into the backpack for the very first time and stayed awake! She loved it!

Yes, this picture is totally staged....

Darth and Daddy

Darth and Uncle Andy

Joli checking out the crane... and the crane checking out Joli!

What great hair!
It seems like Joli's hair is growing at a breakneck speed! One day, I put her hairband in and realized just how long it had grown! In no time, we'll be back to the old "afro puff"!

Joli also had her first exam without anesthesia today! She did awesome! We had to put her drops in at night and then again in the morning. She was completely asleep when we did her night time drops, so that was fine. But, the morning was a different story. Jorge and I tried everything in our Child Development handbooks -- having her do it to take ownership and not be so scary, bribe her.. (okay, so that's not exactly good child development, but we did try and do a rewards system), praise her, etc. None of those worked. We ended up just having to restrain her. It only took about 5 seconds, but it was a difficult 5 seconds! Joli cried through it, and then got over it. These drops don't sting (unlike the ones she gets in the hospital), so that was good. Joli was amazingly cooperative at the doctor's office and let them look into her eye as much as they wanted. She definately was not into having her prosthesis taken out, so Dr. Mukai said we'll just do that next time.

Oh, and Joli's next visit will be in SIX MONTHS!!!! (not three months!). Hurray!!!!

We also had our last visit with Nurse Pat -- we love her! She visited us 2x a week for 7 months during treatment, and then came 1x a month. She's the best!!

SAY "CHEESE!"

So, we bought Joli a Kid Tough Digital Camera. It's a camera that can take a pounding and it's really simple to use. We all went out to an apple orchard yesterday and here are some pictures "Peter Parker" took with her new cam-- can you figure out who's who?

Hi everyone! We're having lots of fun watching the kids play and laugh! Joli's hair is growing so long and curly, and she loves putting it back in her little hairbands again. Jada is now using "consonants" and saying "babababababa" and doing this crazy grunting noise. Lily just turned 1 and had a fun party with all the family!

Joli is so conversational and has the best memory I've ever seen on a 3 year old. The other day, I offered her a banana, and she said, "Mom. When I was in the hospital, the mask tasted like banana." At first, I was totally confused, but then I realized that she had a "banana flavored anesthesia" a few months ago! Wow! She also talks about all of Tita Grace's friends and her adventures with them. It's so impressive!

Jada, in her crazy way, always laughs when the other kids are crying. I'm not sure why, but she seems to take such pleasure out of hearing other children cry. She thinks it's hilarious

Jada also learned how to roll over completely for the first time on her own!

I left Joli and Jada alone for THREE minutes and look what happened...!

Gavin says, "I think this is next tune is a hit!"

Woo hoo! Check me out on this slide!

Joli and Mia loved the pumpkin painting project at Lily's party

Ah, yes, I've waited all my life for this very moment.... MATCHING OUTFITS! (he hee hee)

Some cute pictures

*"I heal you in the name of diapers and drool...."

*Jada is wearing our favorite "candy cane" pajamas that were once Joli's. We loved these!
*We caught the girls making this funny face! Jorge called them "The Dorkenstein girls". It's so dorky that it's cute!

I love this picture of Joli....

Can't believe, this time last year, she was in the hospital with her first round of chemo. A year ago, I never imagined that she'd be running her first race!

38 months and 5 months -

Gosh! It's all going by so fast! I can't believe Jada is already 5 months old! She's doing great- is eager to sit up, and we're going to start some rice cereal soon. She drinks about 6 ounces every 3 hours. She loves when Jorge makes "farting" noises --- with his mouth -- and she has the most contagious belly laugh ever! Jada loves to bat at Jorge's face and grab his facial hair, too!
Mari always jokes that Jada looks like she's "hanging on" whenever she gets carried. It's way cute! Jada continues to be such an easy little gal. She goes to bed around 8pm and doesn't wake up until 6am. This is a pretty typical schedule, and I think she's been doing this since she was born! We really never had a tough time with "nighttime wakings" at all.


Joli is having fun going to Lola's house and hanging with her cousins. She does 1 day a week with Tita Grace, and hopefully they can start going to music class again soon. Joli used to go to music class but stopped once she got sick. Joli also just discovered how long her hair is getting -- she spent a good 10 minutes in front of the bathroom mirror just combing her hair.



We're going to try Joli's next eye exam without going under anesthesia. This will be an all day office visit, and we really hope she'll cooperate. Otherwise, it's back to anesthesia for her! We also have her appointment scheduled to remove her port-a-cath in 2 months. Can't wait!

We're also having fun with our "downstairs neighbors" -- Cousin Lily, Uncle Andy and Aunt Marie. Tons of fun!

Team Mari!
We had an awesome time at the Susan Komen Race for the Cure on Sunday, Mari's birthday (we won't mention how young she is!). We had a huge team of people -- thank you to everyone who walked and supported the team! Even the little kiddies joined in (and actually ran circles around us). We had Joli, Mia, Lily, Clare, and even Jada joining us for the walk. At one point, Jorge (aka SuperDad) was walking and feeding Jada her bottle! Woah!

Team Mari's finish

We're having fun!
Seems like every single day is action packed! Joli is having a blast with her cousins, Jada has decided that she wants to be a big girl and sit up at 4 months, and baby Lily is crawlin up a storm!

Put 'em up! put em up!



Eating Gavin's leftover birthday cake! We had Gavin's eventful party on Saturday, my birthday on Sunday, and then Gavin's real birthday on Monday. Lots and lots and lots of cake!




Rare photo op with Mama and the gals on her birthday



Walking all over Lolo!

Gavin's birthday.. and MINE, too!
I guess it's true...once kids show up, grown ups no longer get a birthday. Well, even so, my birthday wish is to have a little bit of good health go to all of my family members. I think we're due for some.

For those of you following, Mari is doing better. She had a seizure during Gavin's birthday party today (I guess it was technically "yesterday" since it's now just after midnight... it's been a long long day....). Quite an event - ambulance and everything. She's home now after 6 or so hours of being in the hospital.

Oh, and as I was driving home just before midnight after a very eventful day, a car decided to drive head on in my lane and nearly crash into me and Jada. I honestly can't remember what happened between me leaning on the squeaky little Hyundai horn and realizing I couldn't swerve into the next lane, but that car decided to pop back into the correct lane at the last few seconds. "Happy Birthday to Me."

Can't we just catch a little whiff of straight up easy livin' for a change? Is that too much to ask?