Update long overdue!

Well, it's been a long while since we've updated the blog, and we thought it's about time we give you something new to see when you check back. I don't plan on spending the hours right now to get everything caught up, but I'll do my best to briefly cover the basics... and add some recent pictures, of course.

Since Elizabeth's November psuedo-surgery, we've had some significant up's and down's. Her AFP tumor marker levels continued to rise, even though there was no evidence of cancer in the biopsies taken in November. Her CT scan also was clear, yet with the rising AFP's we knew something cancerous was growing somewhere. At that point, as a parent, every headache, every sore leg, every tummyache seems to point to something disastrous.

In December, Elizabeth had severe tummyaches. They were monitored by weekly x-ray images which showed nothing more than constipation. Phew! Her AFP's did continue to rise, and her chemotherapy of irinotecan, leucovorin, and 5-fluoruoracil (IFL) was changed. On December 13th Elizabeth started back on Avastin (bevacizumab), the anti-angiogenic drug (stops new blood vessels from growing consequently choking off tumor blood supply). Her AFP levels had grown from 486 to 611 in the period of a week before making the switch to Avastin. After the first Avastin treatment (given every two weeks), Elizabeth's AFP was down to 600. This first treatment was only at "half-strength" (2.5 mg/kg) due to Elizabeth's previous Avastin complications in August. After the second Avastin treatment (the first at 5 mg/kg), Elizabeth's AFP taken today is down to 311. Such a decrease was certainly not expected and is a very pleasant surprise. We are hopeful that in two weeks time on 1/24 Elizabeth's AFP levels will have continued to decrease.

On January 4th Elizabeth had her PET/CT scan. The final reports from UCLA radiologists (we had the scan there since CHLA doesn't have a PET scanner of their own) show a paraaortic lymph node as being cancerous. This lymph node is in the lower abdominal region and sits between the lower aorta and the spine. There is a large cluster of lymph nodes in that particular area, and apparently spreading to these lymph nodes is very common in ovarian cancer. Elizabeth's doctor at CHLA, Dr. Marcio, will be reviewing the final report and the actual scans himself. It sounds like he may even be consulting the radiologists at CHLA if he still is uncertain about UCLA's interpretation. Overall, the PET/CT showed major improvements since the last one taken in March 2005 (when the UCLA oncologists said that Elizabeth would be dead by September 2005). We are still very very concerned about the possibility of lymph node involvement, and will most likely push for an aggressive approach and the immediate surgical removal of those lymph nodes.

So the good news is that the AFP levels are seeing a significant decrease. Bad news is that we may be facing lymph node involvement. Elizabeth still seems to be doing well, although there are some slow days. She's as fiesty as ever and still gives her stinky brothers plenty of trouble.

I promised pictures so you all can see how much the kids are growing up... Danny will be 1 year old tomorrow, and Elizabeth's hair is getting longer, while Matt shaved his head.

Elizabeth is still enjoying her ballet/tap classes, and even had her first "performance" on December 9 at a Retired Living Community Rec. Room. I don't think there could have possibly been a more warm and receptive audience!

The boys (Matt and Mike) both celebrate birthdays in September (25th and 26th). They chose Chevy's as their birthday dinner destination, hence the lovely sombrero party hats.
Matt turns 4...

...and Mike turns 11

In October we were fortunate enough to have been invited to Celebrate Life with the Michael Hoefflin Foundation at their annual Gala under the Stars, complete with live music from Royal Crown Revue and live/silent auctions. Elizabeth's special friend, "Belle" (yes, the real princess from Beauty and the Beast... she came to read Elizabeth a book at home in August immediately following Elizabeth's unexpected two week long hospital stay--Elizabeth still doesn't know the beautiful Alicia isn't the real Belle) was even there, much to her surprise and delight! (Belle isn't dressed in her usual formal attire because she didn't want to attract attention...)

Elizabeth's fellow age 5 Cancer Warrior, Abby, was there as well. Note how well both of their heads of hair have grown back!

And one of the founders of the MHF, Chris Hoefflin. Chris and Sue worked with their 10 year old son, Michael, to start the foundation before he lost his battle with brain cancer. Ten years later they continue to work to help families dealing with childhood cancer.

In October we also went to Ronald McDonald Family Camp! Nothing but fun here! We even got to room with Abby and her family (they have 4 kids, too!). Elizabeth (Princess Jasmine), Mom (Queen M&M), Danny (Mickey Jr.), Dad (Fireman), Matt (as Stitch, our black kitty cat), and Mike (psychedelic cheer leader).

Yes, Danny was already starting to walk

No shortage of amazing counselors to lavish all the kids with plenty of attention!!

And there is always the incomparable Dot...

Elizabeth never wants to leave camp. I seem to remember going through the same sobbing fit when we were leaving last year!

We joined the rest of the Michael Hoefflin families at the Lombardi Ranch Pumpkin Patch for an early Halloween celebration. Elizabeth decided to wear her costume from two years ago... one can't show up for a Halloween party without a costume!

Mike and Mom joined new friends Mark and Tina to participate in Mouse Adventures at Disneyland (sponsored by MousePlanet.com). Over 500 people participated, but we still took 3rd place in the Sunday-only competition! We're planning to play again in the Spring 2006 event.
Later, Elizabeth got to meet Mark and Tina's daughter, Rani, when we all met up for a family day at Disneyland. They bonded over their love of all things Ariel.

Matt as Buzz Lightyear, this year's Halloween sweatbucket, er, uh, costume... vinyl, yech!

Mike made a great Indiana Jones... he wears the hat every time we go to Disneyland now. Our friend the fiddler plays his (Indy's) theme music every time he sees Mike at the park. Mike gets the biggest kick out of it!
December started with Camp Ronald McDonald's Christmas Party at the Burbank Warner Bros. Studio Ranch. Matt couldn't believe that Ronald was REAL and moving... he's only seen statue Ronalds at Walmart McDonald's and didn't realize it was a real person!

Elizabeth is going to be dangerous when she gets her driver's license... but she'll probably be able to sweet talk her way out of any speeding tickets!

The kids also got to meet Santa at the Santa Clarita Sheriff's Station with the Michael Hoefflin Foundation. As you can see, Matt was rather excited about the whole thing... or not... Thankfully Santa didn't seem to hold it against him as Matt still got that GameBoy SP he wanted.

On December 23rd we had to say good-bye to one of our very most favoritest nurse ever, Christina. It was time for her to move since she was only out here as a traveller. There aren't many nurses who would volunteer to come over to your house to baby-sit so Mom and Dad can have a night out alone, and then hold you to it! We are already missing her terribly and hope that she is enjoying her bit of relaxation between gigs.

And this is why Matt's new nickname is "Box Boy." Don't bother sending him anything, just make sure Elizabeth's goodies come in a box and he'll be happy! One perk to having a birthday in January is that you are old enough to really enjoy your 1st Christmas when it comes along. Danny caught on to the whole present thing quite quickly...

And here is everyone enjoying Christmas morning... Elizabeth with her new tea set, Mike trying to figure out his iPod from Grandma and Grandpa, Matt with his blankie, and Danny trying to get anything NOT meant for him.