On the Road to Recovery...

Elizabeth has been home for a week now, after being discharged after 10pm on Wednesday, June 8. There's a story there, but it suffices to say that we were more than elated to get out of the hospital. Before we could come home we needed to take care of the housekeeping left from staying at the Ronald McDonald House, who by the way were wonderful for letting us stay the 5 nights we did. It was nice for Mike and Matt because they felt like they were on vacation at a hotel, and could still be close enough to visit Elizabeth several times daily.

While we were inpatient, we had help from some new friends. Maureen Massarella, our CHLA employee friend, introduced us to Julia Rubago who heads up the Childcare Development Center for the employees. Julia helped us out immensely by squeezing Danny and Matt in for childcare in their facilities across the street from the hospital. Mom could still feed Danny and Matt loved playing outside at the incredible (and LARGE!) playground there.

Our friend at the Michael Hoefflin Foundation, Lisa DeLong, also helped out by watching Danny during the surgery (Grandma Kirsten had Mike and Matt), and taking Matt and Mike for an entire day well into the night later that week. Lisa is an incredible source of comfort for us and we so appreciate her help with the boys. We don't have to worry about them because they get lots of love and understanding when they are with her and the DeLong family. They've been there. Their angel Justin is, I'm sure, very proud of how much Lisa does to help other families fighting cancer. If you couldn't tell, we absolutely love Lisa, and are so very grateful to have her in our lives.

Mom and Dad (and Elizabeth who wasn't talking to visits) were lucky enough to have Maureen checking in on us the entire time we were at the hospital. She does work there, but she works across the street, and I know I wouldn't want to spend my break time in the hospital with a little girl who keeps yelling at me to not look at her. She took care of many meals for us and made sure we were eating. And she also connected us with Julia for childcare for the boys. Julia is another new friend, now, who visited Elizabeth all the time in the hospital, too. Elizabeth really gave all our visitors a very hard time, but Julia won her over by the time her stay was over by bringing her Oreos. Make a note for next time! We almost needed an extra car to cart all her presents from Maureen and Grandma Kirsten home, too. Grandma Kirsten got her a HUGE swan animal--at least life size--from the Barbie Swan Lake collection. You should have seen us trying to cart everything from the ICU to the regular room the day before we were discharged.

Mommy was surprised when a friend from an online discussion group about acinar cell carcinoma came to visit at the hospital. Edgar was so sweet to bring Elizabeth presents (she eventually did open the kitten and loves it now that we're home!) and stayed to talk about her case and how she's doing. He's a pretty incredible guy who devotes his time to ACC research whilst fighting the disease himself, and I'm sure is more of an expert on it than any one oncologist around. If anyone needs info about ACC, his website is www.aciniccell.org

Elizabeth's friend from the Michael Hoefflin Foundation support group, Abby, and her family also came to visit. Once again, Elizabeth was in quite a mood and "dismissed" them from her bed in ICU. But, thankfully mom Lindsay was able to find Mom, Mike, Matt, and Danny at the Ronald McDonald House. The boys loved playing with Hayley, Abby, and Noah. Hayley is quite the Twister champion! They brought Elizabeth the cutest pink t-shirt with a pouty Tinkerbell on the front, and the words "High Maintenance" on the back. So very Elizabeth! Daddy put the shirt with the words facing out on the head of Elizabeth's bed, where it stayed until we left ICU. When the docs made rounds they would laugh and ask if it was a warning sign. If they only knew...

Elizabeth's ChemoAngels sent fun activities to keep her busy in the hospital. Thank you Princess Amber, Angel Amy, and Angel Stacey very very much!! We all know how short the attention span of a 5 year old can be!

We also had visits from Grandma Kirsten and Great Granpa Hal and Pat. It was hard to get visitors in and out since she was in the ICU from 6/1 through 6/7. Again, not because she needed to be, but because there were no rooms on the "diabetes kids" floor. It cracks me up... they have a "surgical" floor, a "diabetes" floor, and a "cancer" floor (among others). Well, where do you put someone who needs all three???? Apparently, the ICU. Let me reiterate... we are so happy to be home.

Now that we are home, we're just now starting to get back in the groove. It really takes a while sometimes. Daddy is leaving tonight for a week-long business trip to Toronto. Mike has his first night-time performance as the Lion in the Wizard of Oz tonight, with another one on Saturday. Tuesday Elizabeth has a check up with Dr. Marcio, and Wednesday and Thursday should be chemo days. Mike has 5th grade graduation and picnic on Wednesday, beach day on Thursday, and 5th grade softball game on Friday, which is also his last day of school. It is a busy time... Mom is just trying to make it through to next Friday, when hopefully things will start to slow down some.

We had a blast at Disneyland before Elizabeth's surgery and I have downloaded most of the photos so I can post a few later. I can't wait to tell you all about the Ariel visit!

We also had the Celebrate Life event at Griffith Park on Saturday June 11. The hospital sponsors it annually and it was full of food, games, and gifts. We loved seeing our friends from Ronald McDonald Camp for Good Times and making new friends. Dad (and our friend, fellow cancer dad, Rick) were especially happy to see Cindy Crawford there. We do have pictures to share, though none of Cindy. We had fun hanging out with Kelly and Rick and meeting Belinda and her daughter, Emily. Our other friends Mackenzie and Marissa and Manny were there with their families, too. And our favorite doctor, Dr. Marcio, was there to participate in the celebration ceremony. We were so happy to see Dr. Jackie Casillas from UCLA there with her daughter. Mommy had also run into her at the CHLA hospital earlier in the week. Hmmmm... We would love to see her at CHLA all the time...

I think that's enough of a novel for now. Thanks to everyone who has been praying for Elizabeth. Her AFP levels a week ago were down in the 300's, which is great news. Elizabeth has been having a lot of tummyaches, but she did just have major surgery. It's most likely just gas and poop, though. The docs are aware of it, though.

Please say a prayer for Gage Edwards' family. This 8 year old became an angel on June 12 after fighting for 4 years. He has a little brother, Beau, who shaved his head a couple months ago so he could look like his big brother. They signed our guest map on May 8 and left his web address so I'll post it here: www.caringbridge.org/ne/gageedwards . I know that taking a moment to leave a message in his Guest Book would be appreciated by the family.