SEA posts

Anniversary...

Dad is back home from his business trip up to Canada (Toronto). Elizabeth was actually very happy to see him, instead of her usual "leave me alone" (which reads YEAVE ME A-YONE!) on day 1 of chemo. Today was day 2 of getting chemo at CHLA. Tuesday we saw Dr. Marcio, who thinks that maybe we should add a couple of other chemo agents to her regimen to try to get rid of this thing for good. And tomorrow we see Dr. Stein for another surgical follow-up. So we will have spent 4 consecutive days at the hospital. Ick.

We had a great time at Mountasia with our friends at the Michael Hoefflin Foundation on Monday night, even without Dad. Mom was really tired from hiking up and down the hillside (so THAT's why it's called MOUNT-asia) with Matt and Elizabeth playing mini-golf, and Danny in the snuggli baby carrier. Mike had a lot of fun playing golf with his favorite Miss Lisa and Jojo.

Mike has been a GRRRRRR-reat lion (see what I did there?) in his Wizard of Oz play. We are so proud of him. He also received TWO awards at graduation yesterday... the Presidential Academic Achievement Award and the Canterbury Performing Arts Award. He gives us reasons all the time to be proud.

Today is our 1 year anniversary. One year since our world was turned upside down. One year of heartache, trial, and triumph. One year of being knocked down, getting back up, getting knocked down again, and starting to get back up again. One year of learning to appreciate--truly appreciate--each second, and fully realizing that every fingerpainting and trip to Disneyland and bubble bath gets us closer to what could be our last months, weeks, days, moments together. One year since we heard the word "malignancy." Dr. Bahar couldn't even say the word cancer to me on the phone. But I knew. Dad was arriving home from a cross-country business trip that day and Mom got the call. I bet Dad was a little nervous flying home last night cross-country again. That day rocked our world... and not in a good way.

One of the biggest eye-openers has been just how many families deal with just this sort of thing. But we made it one full year out... and knowing how bad it was, we are really blessed to still have our Princess a year later. I look forward to our 2 year anniversary celebration (when we prove to a certain doc that he was wrong about her not making it past September) with Elizabeth dancing in the front yard, picking all the roses.

Things are still scary. Her last surgery may not have been theeeeeee last. She has a huge likelihood of more tumors cropping up. There isn't much more to do except have faith that she will remain strong and we will find a way to fight and win. Keep praying! We're one step closer to a cure!

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.

Elizabeth is home and in bed!!!!!!!!

Dad here, so it will be quick.

They decided to pull the chest tube out Wednesday afternoon around 3:00. Had to get a follow-up x-ray 4 hours later, surgeons took a look at it and said "Go home!" Of course, those things take time so discharge was after 10:00 pm.

It is 1:00 am, but Elizabeth is sound asleep in her own bed.
Mom will be posting to catch up all the details, so look for a lengthy post soon. :)

Thank you to everyone who was praying and all the wonderful get well wishes.

Take care.

Still in Hospital, but out of ICU!!!!

Just a quick post to let everyone know that Elizabeth is out of the PICU. She finally got a room last night around 6:00 pm.
Surgeons were by this morning and think she might be able to get her chest tube out today or the latest tomorrow. That is the last hurdle to getting home.

We forgot in earlier posts to mention that Elizabeth's AFP was down to 539 just before surgery. So it looks like the earlier increase was just a short term increase.

This is very promising since she will start on more Chemo to kill off the microscopic disease.

As you may guess, this was Dad here.

Take care.

Quick update

Hey guys,
It's mom here. Elizabeth is still in PICU, but not because she needs to be there. You see, in the wonderful world of hospitalizations, if they don't need the bed you are in, you won't ever get moved! Because the ICU is pretty empty, Elizabeth can stay there indefinitely. In order for her to get into a regular hospital room, she'd need a bed to open up on 5th floor West, which is really the only place that would take her because she is severely diabetic. And we've been waiting for a bed to open up there since Thursday night. So... we assume we will be discharged late this week from the ICU. We aren't counting on being able to move!!

We are staying at the Ronald McDonald House about a block away from the hospital. It is rather convenient for us at the moment. We've also met some wonderful patients, nurses, docs, and all around good people since checking in. I'll have to name them and thank them all individually later. There have been a lot of people offering their help and taking care of the boys, which has been great. I've been accused of not using enough help, so I'm trying to get over that and graciously accept what is being offered.

Anyway, thanks to everyone who has been praying for Elizabeth and thanks for keeping us in your thoughts. We are hoping to cross this bridge with no further complications, and get right back into chemo.

Hospital update

Dad here again.

Elizabeth is doing very well. She is still is ICU. She was set to get out of ICU, but she did have a relatively small complication yesterday. She had a large amount of fluid filling around her left lung and it was making it hard for her to breath. Dr. Stein put in a chest tube yesterday to drain it. There was about 300 cc's of fluid total. Went well and she is breathing much better.

This morning she was cleared to have her NG tube and Foley cath removed. So, water today and hopefully beef broth for breakfast!

Take care everyone.

Elizabeth is still doing well!

It's Mom... so the spelling should be a little better!! *wink wink*

Elizabeth is still in PICU, but is expected to only be there through one more night... hopefully! Her sugars are so stable--compared to previous experiences--but the docs don't agree that keeping between 100-300 is stable. Well, it is for her! Until she is out on the floor (i.e. out of ICU) she can only receive mylar balloons--no flowers, no stuffed animals. In about 2 days anything is fine. It's not required to send anything to the hospital--goodness knows that Elizabeth is pretty out of it still! She did get the happy face balloon bouquet from Princess Amber (THANKS!!) and we're sure she'll love it once she opens her eyes long enough to look at it! We did read her the card, though. She's still our fiesty little one and doing great even though she's not up and about yet mentally (or physically).

She's at Children's Hospital Los Angeles in the PICU (NOT the CTICU). Visitors are allowed between 9am and 9pm. They are pretty strict on the no kids under 12 years old policy until she's out of ICU. Once we're in a normal room just about anything goes (except latex balloons--they don't like a lot of latex around here).

Princess Elizabeth had a wonderful weekend with the family at Disneyland Resort and we can post pics later (like, in a week or so!). Other than that, keep praying for a smooth recovery so we can jump back on that chemo-wagon ASAP!

P.S. I spoke with the anasthesiologist this morning (Dr. Eby--just love him!) who told me that when Elizabeth was finally getting good and "out of it" she calmly looked at him and said ,"Excuse me... please don't touch me." Then she was out. Funny girl! Don't know how surgery would have happened without her being touched... That's our little princess!

Thanks for the support and prayers!

Surgery went very well

Just wanted to post a quick update. This is actually Dad. Mom is in ICU with Elizabeth, but I wanted to make update while I had a chance.

Surgery started late, about 11:00 am. First part was about 1.5 hours. After removing the peritoneal lesions that were expected, they explored and found 3 others that were removed. The second part was the liver resection and that took about 3 hours. Other than finding the additional metastesis, everything went as expected.

Elizabeth is doing wonderful! She was fighting to take "breath over the ventilator", so they removed they excabated her and took her off the ventilator about 10 pm. Of course, they are "struggling" to get her insulin drip "under control". We just laugh. It is such a small concern and they all come to realize that is just okay to run her sugars high at a time like this.

More updates from Mom to come. My apoligies for the typing. It has been a long day and at 4:00 am, tough to type.