Recent updates

Here is the update we posted to the Caringbride webpage for Elizabeth recently:
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Monday, April 10, 2006 7:36 AM CDT

Hi Everybody!

This message will be kept pretty short since we are away from home...

We are on a family trip in Tennessee right now. Elizabeth and her brothers are having a great time playing with their cousins and hanging out with Grandma Mary, Grandpa Terry, Aunt Tammie, Uncle Dave, and Uncle Joe. There are plenty of animals to keep Danny's and Matt's interest, and Mike is convinced he can talk us into taking one of the dogs home (NO!!)... We left on Friday and will be here through Easter. Elizabeth was concerned that the Easter bunny may not find us, but I explained that, much like Santa, the Easter bunny always finds girls and boys. Then she mentioned that it would be really cool if he hid Easter eggs at our house, too, so they could find those eggs when we get home. Ugh... I wish she had said something before we left!!

We had a meeting with Elizabeth's surgeon on the Tuesday before we left (April 4). I'm still in shock and I don't know what to make of it, or what it means for the future, BUT he discussed Elizabeth's final pathology with me. Dr. Stein pulled 11 regional lymph nodes and 2 distant lymph nodes for biopsy. ALL 13 lymph nodes showed NO SIGN of cancer. So is Elizabeth's cancer lymphatic? Probably not... although there is the possibility that the most recent tumors had started in lymph nodes and then completely overtook them leaving no normal lymph node tissue. We are pretty torn over Elizabeth's oncologist's view (it's bad) and her surgeon's view (it's still treatable), but regardless, clear lymph nodes are still a really really great thing. Could this be our miracle?

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We have since returned to California from our trip. It only took us 15 hours to get from Grandma and Grandpa's house in Tennessee back home on Tuesday, April 18. I think we are all still a little tired from the travel!!

Since then, Elizabeth had a CT scan on Wednesday, April 19, and met with the GI docs that same day as well.

Dad is with Elizabeth at CHLA in a meeting with Dr. Marcio (Elizabeth's oncologist) and Mom is home with the boys still trying to get everything ready for Family Camp at Camp Ronald McDonald for Good Times (near Idyllwild, CA) that starts later today. Looks like we will have to rent a car for the trip since the van started acting up on the way to the hospital according to Dad. Just another bump in the road...

While we did get news that the lymph nodes were clear in the final pathology from Elizabeth's March 8 tumor resections, we are getting some initial reading from the CT scan that is NOT good. I am anxiously awaiting Dad's call once he is done in the meeting with Dr. Marcio, but the part that I was listening in on wasn't good. It appears that Elizabeth has a new marble size spot in her right lung that is most likely new tumor. It is in the tissue somewhat near the location that she had biopsied in November 2005, but it is definitely separate from it and new, and appears to reside in the lung tissue itself.

Elizabeth will be starting on the Sutent (sunitinib) today at full strength for her size of 37.5 mg/day. Late last summer, it seemed that Elizabeth was developing lung mets, and when she started the Avastin (bevacizumab) it necrotized and liquified them causing her lung abscess that was drained in August 2005. It was further prepped for removal and biopsy in November 2005 which showed it as scar tissue (most likely had been malignant and the Avastin and IFL [irinotecan/5-fluoruoricil/leucovorin] got it). Hopefully this new and better version of drug similar to Avastin will get it now, too.

No matter how many times new tumors appear, it is always a swift kick in the gut. Dad is reviewing the CT with Dr. Marcio now and hopefully I'll get some more detailed information in a short while. Until I have a chance to post again, please keep praying that Elizabeth keeps feeling as good as she seems to be. Sometimes I wonder how she could still feel up to playing and running around and dancing with all that she has going on... her newest GI issues keep her running to the potty with diarrhea just about once every waking hour. I am praying that she isn't just trying to put on a happy face for us.

So here's my new prayer request list:
* that Elizabeth continues to improve,
* that the Sutent is tolerated and helps,
* that this new tumor is affected by the Sutent,
* that there are no other tumors lurking, at least for now,
* and that Elizabeth's cancer is not lymphatic.

Thank you everyone who has kept checking on Elizabeth and sending her messages (both electronic and postal). Our mailman had to deliver a pile of packages and cards when we returned from Tennessee. The boys all got mail, Elizabeth got mail and packages, and I am overwhelmed that there are still so many of you who stay so involved in Elizabeth's Story. We live this everyday because we have to, but there are so many of you who are right there with us who don't have to be. I don't know that I could choose to do it, and I am just so grateful to all of you who do. Thank you.