LOTS OF HOLIDAY CHEER!

We had such a great Christmas and Vacation time here in our house. Joli finally (whew!) got over her illness and started feeling better right before Christmas. She got tons and tons of gifts from all over! We also had relatives visit us during this time. Pops and Pedro brought along Titi Ericka and Uncle Dennis (all the way from Orlando, FL!) for a visit. Then, Tita Mari and Uncle JP and Gavin arrived from California to visit!

My brother Jonathan called today and said, "So, Liza, are you showing at all with your pregnancy?" After I got over laughing hysterically (because I feel like I've been showing since week 3....), I decided to post some almost-6-months-pregnant photos here. Enjoy! Happy New Year!

HURRAY! SHE'S FEELING BETTER!!

Joli's still complaining of stomach pains, but she's in a much better mood today. Thanks to "the Ladies" in the Stonehill admissions office who gave her some awesome early Christmas gifts! We hid them under the tree, but she still managed to find them and open them.

Oh, and ammendment -- so, see our tree? Well, notice there aren't too many presents under there. WELLLLL.... I got home from work today and Jorge pointed me towards the Christmas tree. The Brockton Visiting Nurses (our 2x a week nurse!) came and dropped of about a dozen presents along with gift certificates!! They were probably doing one of those "giving tree" types of things, and it was amazing to be recipients of the anonymous generosity. SO, THANK YOU!!! Joli, honestly, has so so so so many presents now under that tree! We've also received some wonderful presents in the mail from friends and even a few dozen Christmas cards from students from colleges and high schools. THANK YOU!!!

Some days are easy.... some days are not
(if you don't want to hear the ugly side of treatment, please don't read this!)

Okay, well, usually Jorge and I only post good stuff because only GOOD STUFF has been happening to us. But, I do think, if this is a true "documentation of Joli" we need to include some of the not-so-great-moments. So, if you don't want to read it, you don't have to. I just thought in all fairness to her, and to record keeping, I should post this.

The past few days post-chemo (and even during chemo) have probably been the hardest since we started this whole journey. As I wrote a few days ago, Joli caught a viral infection while undergoing chemotherapy. So, she's been really bummed out from chemo and now has to battle this illness. I gotta tell you, there is nothing more difficult than to see your child in excrutiating pain -- and know that you can't do anything to take it away. We've been through this a few times -- when she lost her eye, when she had to go through surgery and chemo in September, etc. But, for some reason, I think this is really tugging on Jorge and me more than usual. I also think we're so tired, so exhausted, and feeling like we've had enough of seeing her hurt so badly. But, then again, Jorge and I are only hurting emotionally... it's our brave, strong, amazing, beautiful Joli who is in pain physically.

So, lots of it is related to poop. Yup. Poop. One of her chemo drugs makes her constipated, and coupled with not eating and drinking because of her RSV, Joli is in pain. All we can do is watch her cry, scream, and yell "Why, Mommy!! Why, Daddy!! I'm scared!! I'm sad!! It hurts!!" And, we do our best to just hold it together.... What really hurts us (again, emotionally... it's nothing compared to what she goes through physically) is when she looks at us and says "I'm so sorry! I'm so sorry! I'm so sorry! It's my fault!!"

Joli, I know somewhere down the road, you're going to read this, so I'm going to write this in for you now. It's not your fault. None of this is your fault. We're so sorry you have to go through this, and Daddy and I hope we can be as strong as you are being right now at the age of 2 years old. We're both so sorry you are in pain. We are both so sorry it hurts right now. We love you tremendously. We love you, honestly, more than we love our selves. I know Daddy and I would trade places with you if we could. Yet, I know neither one of us could deal with what you go through even for a second. You are so much stronger than us. You are so much braver than us. And, we love you.

For everyone else reading this (and, Joli... it'll be cool for you to see just how many people read this, follow what's going on in your life, and LOVE LOVE LOVE LOVE YOU!!), please pray for a speedy recovery for Joli.

Thanks,
liza and jorge

Joli is 29 months old!

honestly, this eye looks better and better each day! Joli is still super sick, and I imagine that's really hard to battle post-chemotherapy! She's a bit grumpy, but overall she's doing the best she can. Let's just pray she's healthy for when "Santa" appears on Sunday! Notice how much smaller Tigger keeps getting next to her! You can barely notice him now!

Just got home....

Joli just got out of the hospital because she had a couple of complications. We usually get discharged early Saturday morning, but ended up staying about 12 hours later (so, yes, we are home now!). She developed RSV - or a respiratory infection. She spiked a fever of 103 last night and then spiked again this morning to 101. We had to wait until she stayed below 101 for at least 8 hours before they discharged us. So, we are home. Joli isn't allowed out or around people right now, and we're hoping she's all healthy for Christmas! It kind of stunk because she likes to go to the playroom at the hospital, but she ended up being on isolation and precautions - like, the doctors and nurses had to wear protective clothing and masks before coming into our room! But, we're home and happy to be sleeping in our own beds now! More pictures tomorrow, probably!

Just checking in...

Hi, everyone! Thanks to all the friends and "friends-of-friends" who have been checking Joli's site lately. The fundraiser recently ended, and hundreds of Thank You letters have been sent (which is maybe why people are checking). I did my absolute best to try and send a letter to everyone -- but to get all the names and addresses accurate seems nearly impossible. So, if you check this site and didn't get one, please know that we are forever thankful for your support and help!

Joli is in the hospital right now getting chemo Round 4. This was a very interesting hospital stay -- we actually met 2 other children who have retinoblastoma!! It was semi-planned (sort of) to meet. Joli was scheduled for chemo, and a little girl from Rhode Island was heading to Boston for her yearly exam. There was also a family from Arizona (yes... Arizona!) who was there doing proton beam radiation (Joli didn't have this... the point of PBR is to save vision in the eye.. she was way too late). We all met at the Yahoo online support group, and happened to all be there at the same time! So, Joli met 2 other kids with prosthetic eyes who had the same exact cancer as she does! So awesome!!! (well.. not awesome that they all have Rb... but you know what I mean!).

The hospital staff put together an amazing Christmas party for the kids.


You know all those times you donate at church for "the giving tree" or whatever? Well, we actually got to see what it was like to be a recipient for that generosity. "Santa" gave Joli 2 presents and even addressed her name on them! She was a bit freaked out about Santa, but had no problem chowing down the chocolate cake!

I'm exhausted. This is a pretty tough job pregnant! But, we're psyched that Joli is healthy, that we have amazing friends, and that we have each other!

Love, Liza

Joli's BEAUTIFUL SIDE PROFILE (of her prosthesis!)

Really no words to describe this feeling....

Today Joli went home with her new eye. Oh my gosh. There truly are no words to describe the feeling when you see your own child feel more beautiful than ever. We were a little worried about the process because it has been a long, long, long day -- and the eye was inserted at the very end of the day. We had to wake up Joli from her nap for the insertion, and, surprisingly enough she was very cooperative and even asked if she could help do it!

Joli then got a mirror, and when she looked at herself for the first time, I honestly think she saw an angel. She had this look on her face, and her entire soul just became both peaceful and excited at the same time. I wish I had better attention in Poetry class because then I could truly describe this feeling -- but I hope you get to experience this feeling of joy in your lifetime.... I guess the closest thing I can explain is when I saw Joli for the first time in her life -- the seconds after I gave birth and met my daughter. I think she felt like she "met" herself for the first time, or at least in a long time.

Here are some great pictures of the first few hours. The first picture is a few seconds after the prosthesis was inserted. The second is a few hours after. From what we were told, as time goes on, her muscles will adjust to the prosthesis. There is so much scarring from her surgery (which is normal), and the muscles haven't been stretched nor used in so long. So, as time goes along, it'll be more "normal feeling" for her and for her body.

So, just to make sure everyone knows this -- Joli can't see out of the prosthesis (which is a question we've gotten a lot). It's simply a piece of painted ceramic. She will never see out that eye.

Okay! We're gonna go snuggle now! Of course, more pics to come!

Love, Liza and Jorge and 2-eyed Joli!

AND THE WINNERS ARE...

Well, the raffle drawing is finally here! We went over to the Eschauzier's house, and had such a great time. Our most sincere thanks to everyone who donated prizes, money, time and love to the fundraiser. We knew this was a huge undertaking, but tonight we were truly in awe.... Deirdre estimates that about 4,000 tickets were sold. There were 40 raffle prizes that were awarded tonight, and even a special raffle done just for people who sold tickets.

But, the reason why we didn't know how huge this fundraiser was, was because Deirdre and Chase never -- not even for a second-- had us worry or even think about it. Even tonight, when we tried to do things like contact people or offer to do things, Deirdre wouldn't let us lift a finger. This is probably going to embarass them (because they never look for public praise), but I can only hope that you all have friends in your lives like Deirdre and Chase. I know people like them are rare in this world, and that's a shame. We are so thankful for everyone's efforts in raising awareness of our family's struggle and of retinoblastoma.

So, here are some great pictures we took tonight. I love the one of the "5" kids (yes, one of them is a doll). It gives us a little snapshot of what life may be like in about 6 months!

Enjoy! And, from the bottom of our hearts, thank you to all of you who have helped, prayed for, and supported our family. With friends like all of you, nothing is impossible!

Love, Liza, Jorge and Joli

Joli's 2nd prosthesis fitting!

Well, a happy-tap-u-lous 5th wedding anniversary to us! You know, most people celebrate it with the "Paper" anniversary, or the "Silver" anniversary, or the "Golden" anniversary. Not Jorge and me... we celebrated December 9th as the "Prosthesis/Snow Storm" anniversary. Yup, in true playa fashion!

Joli did so awesome during this fitting. Her first fitting was in October and it was under anesthesia because it involved lots of prodding and poking. This one was amazing, and I can't say enough about how great the Jahrling siblings are -- they are the epitome of professionals. They are amazing with kids and have just a wonderful sense of humor! (complete with an array of "hand farts" and cartoon voices!).

This visit consisted of taking a wax mold of Joli's front lid part, painting the iris, and shaping, shaping and more shaping. She had to have the wax mold taken in and out about a dozen times. The first few times, Jorge and the staff had to restrain her (which, is understandable because it's quite a scary, weird feeling process). But, towards the end, Joli just sort of sat there and let them take the eye in-and-out. They also had this great Mickey Mouse doll that they fitted with 2 prosthesis, and Joli practiced taking the eyes in and out with a special suction cup (something we'll need to do a few times a year).

So, the pictures here are of Joli with the Mickey doll, and a good close up of her red wax mold -- you can see just how much her eye lifts and opens with it in! On Tuesday, that red wax will be replaced with her new, pretty, brown and white eye!

Happy snow shoveling!

PLAYING WITH HER BUDDIES!

Hi, everyone! Joli went to Lucy's day care Christmas party and had such a great time! It was nice timing because her blood counts were good and she was able to be near lots of kids. She jumped right in and played with all her old buddies. Hopefully she can start going back to Day Care in April or so.

Jorge and I have been completely obsessed with Joli's emerging hilariousness! We spend most of our day just laughing and talking about how silly she is, how smart she is, and all the funny things she says during the day. She's at that point where she is completely conversational and oftentimes says stuff that we're shocked she knows. Some funny exchanges:

scene: Jorge trying to put Joli to bed
Jorge: Joli, it's time to sleep. Close your eyes and go to sleep.
Joli: grabbing Jorge's face in her hands Dad, relax. You have to relax. Close your eyes and I'll go make the coffee.

(Whhaaaatt??)

scene: okay, in bed again and Jorge is trying to sleep but Liza and Joli are making lots of noise
Liza and Joli: La la la! Laugh laugh laugh! Fun! Fun! Fun!
Jorge: Joli! C'mon! Go to sleep. Can't you be quiet??
Joli: No. No. shaking her head. I don't think so, Dad.

We're back in chemo again next week, and Joli goes for her prosthesis fittings tomorrow. Hope all goes well!

HAPPY BIRTHDAY, UNCLE PEDRO!