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Home at last

She flies

The Disney Princess flies home! 30,000 feet, munching, and watching movies.

Cruising

Smile.

On land

Taking off from orlando now. All is good!

We escaped Ernesto, mostly!!

Well, we spent the day at Disney's private Island, Castaway Key. Elizabeth absolutely loved the RAY encounter. They were swimming around everyone and they all got to feed them. It was quite amazing. When we can get the pictures up, I am sure Mom will recap it.
Towards the end of the day, we got the edge of Ernesto. Winds shifted from 15-20 mph to 50-60 mph in about 5 minutes. Mike was snorkeling and we were all on the beach. Instantly, we tried to shield from the rain and get Mike out of the water. A bit scary when the power boats were flipping over and the lifeguards surfboards were skipping across the water.
Everyone was safe in the end and we got back on the boat drenched.
More to come. Looks like we will get into port late because of Ernesto as it moves up, but right now we are in beautiful water and the day is gorgeous.

Bon Voyage!!!

We are sailing! This is the first pic while moving. Rooms are great and everything seems set up really well. No cell coverage once we are out, but we will check in when we can. Bye for now.

We're off!

Limo to the airport! Thanks Make-a-Wish! What a way to travel. Plane taking off now. Ya!!!

Happy b-day mom!

Happy birthdbay Mom! Birthday dinner and testing the mobile posting. More pics to come on the cruise.

Look for up to the minute cruise pictures(hopefully!)

So for the cruise, we are going to try something new. Automatically sending pictures from the cell phone to the blog. Sounds cool, but it may not work when we are out of the country, but we will try. This was a test one in the living room as we are finishing getting everything ready. Elizabeths limo arrives bright and early at 7:10 am tomorrow morning!!

Barbie Fairytopia Live

Today Elizabeth and Mom were fortunate enough to spend the morning at the Kodak Theatre (in Hollywood, home of the Oscars) watching the Barbie Fairytopia Live Stage Musical show. Not only did we get to see the show (with some pretty good seats), but we bought special event tickets. All of this morning's show proceeds were being donated to the Make-A-Wish Foundation, Los Angeles Chapter--an annoucement was made that the show raised over $13,000 for Make-A-Wish! There was a special reception for anyone who bought the Wish tickets where the girls all got to meet the star of the show (Erin Elizabeth Coors), Barbie, dressed as Elina (the fairy star of the DVD movie Fairytopia, for those of you without little girls at home). Grandma Kirsten gave Elizabeth a new fairy costume on Thursday, so she of course had to wear it to the show. It was a wonderful experience for us both, getting to do something so normal amongst other mothers and daughters having fun together. We also got to meet some of the extremely nice ladies who work at the LA Make-A-Wish office. As part of the Wish package, we each got Fairytopia gift bags, too. Elizabeth could not have been more thrilled with the whole event. She insisted on getting the CD recording (and a stuffed Bibble... seen below being fed ice cream) as her souvenir purchase so she can listen to the show over and over again. She has already played it 3 times so far today. I think she really liked the show...

Elizabeth and Elina

Getting ready for the show to start... and getting EXCITED!!


Posing outside of the Kodak Theatre


Feeding Bibble ice cream at 31 Flavors

Other news...

We had our doctor's appointment yesterday with Elizabeth's oncologist, Dr. Marcio Malogolowkin. No CT scan yet, probably in 5 weeks we'll have it. Elizabeth has to go at least 8 weeks from her last surgical procedure (which was her VAT procedure circa July 10) before she can go back on any anti-angiogenic drugs (i.e. Sutent, Avastin, Tarceva). We still think that the Sutent was working for the short time she was on it (two rounds of 4 weeks on, 2 weeks off), so we'd like to get Elizabeth back on it ASAP. Any further surgical procedures would set us back waiting even longer before we can get her back on the Sutent, so, for now, until anything would indicate otherwise, we are sitting tight waiting for the 8 weeks to be up. Elizabeth is continuing on the daily 37.5 mg Cytoxan (cyclophosphamide) and weekly vinorelbine metronomic (steady, low-dosing) regimen in the meantime. New AFP levels will be drawn on Thursday, when Elizabeth is back to the hospital for her weekly vinorelbine. Pray for some good news with those levels evening out (or better yet, dropping). Her hemoglobin has been holding steady since she was transfused with red blood cells (donated from Mom--no yucky Daddy blood) two weeks ago, so that at least is good news.

We're getting ready for the Disney Cruise and will be leaving one week from today! Elizabeth is very excited and today got all giggly when she saw a limousine in Hollywood... because a limo is coming to pick us all up and bring us to the airport and start our Make-A-Wish trip! The boys are starting to get bouncy, too, every time the cruise comes up. This week will be busy with laundry and packing and last-minute preparations, and the time will pass quickly, I'm sure. I worry about the amount of luggage we will require, though... afterall, a princess does travel with quite a wardrobe, both costume and not!

Thanks again for checking in on Elizabeth. Thankfully she has been feeling pretty good the last few days. Hopefully it lasts so that she'll be able to really enjoy her special trip.

Very High Tumor Markers

I had been putting off doing an update because I had been hoping for some good news on Elizabeth's status to post. Unfortunately, I don't have any great news to share about how the new treatment is going so far.

When she was in the hospital for her infection (6/20-7/21), her AFP levels were checked (circa 7/16). It was the highest it had ever been at 6600. The day she started the cyclophosphamide/vinorelbine regimen (7/28) her AFP measured 15,900. And this past Friday, 8/11, after being on two weeks of therapy, her AFP is up to 27,500. We have never dealt with tumor marker numbers being so high.

As of her last CT scan (7/10), there were no new apparent gross tumors growing. We are currently lobbying to get a CT scan sometime next week. We have three main concerns. First, her AFP numbers are very much out of control, and something is certainly growing somewhere (or everywhere...). Second, she is off the antibiotics she went home on after the hospital stay, and we want to make sure the infection truly has been taken care of. And last, the reason why we are pushing to get it next week is because Elizabeth's Make A Wish trip has finally been scheduled and we leave on 8/26. We certainly don't want to be away from CHLA and have any major medical issues come up!

So on a more positive note, Elizabeth's Disney Cruise is finally going to happen. The boys are almost as excited as she is! I'm glad that we're doing this, but so apprehensive on so many levels. We'll be cruising for 4 nights, and I worry about making sure she's fine and won't need to be hospitalized for the time we're gone. Also, she only get's one Make A Wish. So, in a way, it's very final. There will no longer be a Wish trip to look forward to. I had been putting off doing it because in a way I'm scared to go. It's almost like admitting we're near the end and sort of fulfilling a dying wish. And I'm not ready to go there yet (like I'd ever be!).

So please keep her in your thoughts. Say a prayer that she has enough strength to keep fighting this thing. She's dropped weight over the weekend again, and she needed red blood cells transfused two Fridays ago. It's so hard to know whether or not she's going to bounce back this time or not. She's surprised us so many times before. I just pray that she has some more surprises in her.

Thank you so much to all the ChemoAngels who have put countless smiles on Elizabeth's face again! She has been showered in cards, letters, packages, and love. I am continually amazed at how much good a simple card in the mail from an angel will do for Elizabeth. As we get further into this, each and every smile of hers becomes more and more precious to us. I am so very thankful to each and every one of you who has blessed us in this way.

Thanks for checking in on her. I'm sorry there isn't better news to share. I wish the day would come that I could post that she was in remission, but sadly we aren't (and may never be) there.