Met with Marcio today

So, today was the day to meet with Elizabeth's Oncologist to figure out where we are going as she finishes recovering from the surgery.
She is doing very well. Very active, but she still is having the watery diarrhea. It is getting better, but it is taking time. Otherwise, she is doing great. She has her surgical and endocrine follow ups next week, so that will finalize where we are with that.
As to the oncology side, it was a tough meeting. The good news, most likely we will start another new, novel drug to try and keep the tumors at bay. It is Sunitinib, marketed as Sutent by Pfizer. It was approved by the FDA January 26, 2006. Being so new, he has to figure out prescribing doses and make sure we can get it. Should know by Thursday if it is a go for sure. For those that like the details of the drugs, it is both a protein-tyrosine kinase inhibitor and an anti-VEGF/anti-angiogenesis drug. It was released for GI stromal tumors and Renal Cell Carcinoma. IT working for RCC makes it worth trying with Elizabeth. It is simliar to the Tarceva/Avstin combo, but newer and covers more kinase paths.
The bad news, more and more the approach seems to focus on techniques aimed at slowing tumor progression instead of cure.
Well, tomorrow marks one year from when Mom started this blog.
This March is 2 years from her first oily stools after the pepperoni pizza and she is still fighting and kicking cancers butt. See..Elizabeth's caring page
Til next time.
Dad

Okay, so Mom is really excited that she has TWO articles published on the ClubMom website...
Here is the link to the second article about being your child's healthcare advocate:
http://www.clubmom.com/display/231350?fromPage=/search/split.jsp

(In case you missed it, the link to a story about getting over baldness is in today's earlier post below... hint, hint)

No Asking "WHAT NEXT?"

Elizabeth went to dance class today for the first time in at least 2 months. She was so happy to be back, even if she just sat and watched for most of it. She was a little tired this morning and was yawning a whole lot, but she did manage to dance a bit and was simply on Cloud 9 after class. Miss Rosie, Elizabeth's first dance teacher (and owner of CenterStage Dance LA), even stopped in to say hi. Elizabeth has been talking about Miss Brandi, Miss Heather, and Miss Rosie all afternoon. Thank you ladies for making Elizabeth (and me) feel so welcomed back!

Don't ever ask "Now what?!" when you feel like things are going wrong... no, really... We laugh now (what else are we going to do?) about it, but let me explain.
Dad left his job at the end of February.
Elizabeth had surgery on March 8, from which we had pretty bad news, to put it mildly.
On March 10, Dad's first TB test was borderline positive.
My (mom) Grandma died on March 11, from cancer no less, which was expected, but still really sucks.
When we were taking Elizabeth home from the hospital on March 17, our minivan blew out a tire. (Dad was NOT going to try to change it himself... it was raining, and with our recent "luck", he joked that the car might fall on top of him if he tried... yay for AAA!)
That same day, Dad's second TB test was positive.
This past weekend, our oldest child finally gave us his progress report card... it is very NOT good.
And on Monday, our oldest adopted cat, Schroedinger (to find out why that was his name, google "Schroedinger's cat"), died.

Ever feel like things are starting to spiral? Well, we had been asking each other "what else is going to happen?" and now we're just rolling with it.

Good news, Dad's chest x-ray was negative for active TB. He is at a Dr. appt for his follow-up right now.

Also, Mom has a little story about Elizabeth published on the ClubMom web site.
Here's the link:
http://www.clubmom.com/display/231370?fromPage=/search/full.jsp

Thanks Angel Janet for sending Elizabeth's most recent present... she had been asking for a mini-Barbie every time the commercial came on. When I was in the store a few days ago I had almost bought her the very one you sent. It is like you can read my mind with your gift selections!! The same thing happened with the mermaid doll... and yet, Elizabeth has never already had any of the things you pick out for her. Last night after she opened the package she said, "Mommy, I don't think that my angels are people--they are real angels in Heaven." Thank you, to all of our angels past and present, for showing my daughter that real angels exist.

Bunny Visitor and Big Night Out

Elizabeth is steadily recovering at home. She was sprung from CHLA on St. Patrick's Day (hope you wore your green), after spending only 9 days inpatient... that's a full 5 days earlier than we were told she would need to be there. Talk about luck o' the Irish!!

Right now, Princess Elizabeth is on her way to go see Disney's Princesses on Ice, accompanied by Daddy. She is most excited to have gotten out of the hospital in time to make their only local appearance, and is quite dressed up for the occassion... however, I wouldn't have chosen to pair tan suede knee high mocassin boots with a formal black and pink dress, but who am I to stand in the way of a princess's fashion sense? Elizabeth claims to be "stylish", and tonight was no exception... she even wore her pink glittery head bandana. Daddy is proud to have her on his arm, even with her questionable wardrobe choices.

Yesterday, Saturday, Mike found a visitor in our backyard hiding in the wood pile. He was mowing the back yard when he saw her, and came to get us. We thought he was seeing things (or stray kittens) when he claimed there was a "white hare" in the back yard. Sure enough, there was the sweetest little white bunny, with dark fur around her eyes and spotting her ears. She has been eagerly greeted by the children of the family (and Mom, too), although Dad and the cats aren't too sure about her--yet... Not something we would have picked out at the pet store, or actively sought out, but she is sweet and welcome nonetheless, and Elizabeth couldn't be more excited about her. Mom has been having allergy attacks all day, but we're hoping it's just the grass and not the bunny...

Elizabeth continues to have diarrhea, though, and we are worried about that. Hopefully tomorrow we can have her blood work done at CHLA to find out if she still needs healing time and more TPN (liquid nutrition that is administered intravenously through her hickman catheter... totally painless) at home. Keep Michael (Dad) in your prayers please, also. He had two borderline positive TB tests over the last two weeks when he was tested for volunteering at the hospital. Adding TB to our plate right now is just not acceptable!!

As Dad had mentioned before, I had gone to Maine with my mom to visit my grandma for the last five days of February, for which I am so grateful to have been able to do. On March 11, she passed peacefully in her sleep. She had battled lung cancer for almost two years. Cancer sucks.

Daily Miracles

Elizabeth has been eating around the clock ever since she got the go-ahead from the surgeons... Dr. Roman Sadarak (sp?) started as Elizabeth's least liked doc (he hasn't been very patient with tape removal in the past...) to her absolute favorite once he said she could eat whatever she wanted. Dr. Sadarak works very closely with Dr. Stein and has been checking on Elizabeth at least twice a day since she's been inpatient (and we think he even did the "closing up" in surgery). We like the surgeons. Not only do they give the go-ahead for eating, they are pretty incredible cancer-removers, too! Hmm, is there anything that they can't do?! (Don't answer that--I like thinking we're covered for now!)

Dad stayed with Elizabeth last night and will stay tonight as well. Rumor has it that discharge papers are in the works and Elizabeth may be sprung tomorrow!! (If anybody was planning on visiting Elizabeth, please please check to see if she has been discharged before coming... we would hate to have missed you!)

Elizabeth and her brothers enjoyed a very yummy pizza together in her hospital room for dinner tonight. Mom was just happy to have showered and put on clean clothes before returning to the hospital... the word GRIMEY takes on a whole new meaning when stuffed into a closet size room with no circulation for a few days!

So again, Elizabeth surprises everyone with her ability to recover quicker than anyone the docs have seen. We were told it would be at least a 2 week stay after surgery, and here we are, tomorrow will be day 9, and she will get to go home.

The sheer fact that Elizabeth is still alive today is a miracle. That she has made it past the 18 month mark with pancreatic cancer is a miracle. That she tolerates treatments so incredibly well is a miracle. And everyday she shows us that there are more miracles yet to come. I'm ready to add them all up and hope for one big miracle--the Giant of all giants--remission.

I (Mom) was reading on the net this morning about vaccine breakthroughs for pancreatic cancer... including for cases that were assumed foregone causes. It looks very promising. Johns Hopkins started the research with three pancreatic tumor lines that they pull from, but St. Vincent's here in So. Cal. makes vaccine from patient tumors to be used on that particular patient, so it couldn't be a better match. It's something we're looking into anyway. Just another example of how there are new breakthroughs literally every day. How close could we be to a real cure? We're ready to do whatever it takes to keep Elizabeth as healthy as possible so we can wait as long as possible for that cure to come. I've also started looking into glyconutrients as an alternative supplemental therapy.

Thank you for your continued prayers and outpouring of care and love.

Elizabeth's IV pole was the envy of every kid in the hospital with her funky princess cow in a pink fur coat attached--thank you Angel Pat. Her wall was brightly decorated with all the get well cards she received--thank you Angel Pat, Angel Barbara, and Uncle Dave, Aunt Tammie, Patricia, and Sandra. She had plenty of suncatchers to paint--thank you Moe--and lots of paper and stickers and books to keep her busy--thank you Grandma Kirsten. Elizabeth even had Barbie Elina Fairy/Mermaid to play with--thank you Uncle Luke--and a new Kelly doll companion--thank you Helena Montana. And just today she squealed with delight when she opened her new Princess Make-up kit and started doing her face--thank you Angel Janet. Yesterday she had a ball bringing up her balloon bouquet to her room from the front desk--thank you Aunt Amy and Uncle Greg. And her favorite visitor must have been dear sweet Belle (yes, she knows the REAL Belle... quite lucky, I must say, and yes, Belle is really just that pretty in person) who came with new books and read her a couple of them--thank you Belle! She also had spent today playing with an incredible pop-up book that looks more like a small doll house with fairies and princesses, and the Cabbage Patch Kid she has been asking for--thank you Sue and Chris. Carol from the 5W Child Life Play Room has been great, too, providing Elizabeth with activities to keep her busy during her entire stay.

Two years ago, Elizabeth had just started showing symptoms of something being wrong.

One year ago, we were told that Elizabeth had about 6 months left to live.

Today, we are told that unless we find a miracle, Elizabeth may have 3 - 6 months on the low end.

A lot has changed in two years.

A lot has changed over the past year.

Elizabeth continues to defy the odds and the prognoses she has been given.

We are praying for her strength to continue and for divine guidance in choosing our next path.
And that Giant of all giants... we are praying for remission.

NG tube out!!!!

Just a quick update to let everyone know that the NG tube is out!
Ya!!!!!!!!!!
So on to the chicken broth. Hopefully, it all runs fast now. It looks like Mom and Dad will switch for a day or two tomorrow. Hopefully, it will give everyone a bit of change to help things.
Take care.
Dad

Hospital stay update..

Elizabeth is doing well so far. She has been a bit out of it mainly from the benadryl. We tried a different pain medication, deladid(similar to morphine), hoping she would not have the itchy side affect. But, on the fourth dose, the itching started. So, now she gets benadryl each time she has pain meds.
Otherwise, she is growing more demanding each day. (A good thing!) Her spunk never seems to waiver. This hospital trip, the choice description of Elizabeth my most of the staff is precocious. She has such a knowledge of everything and has no problem letting the doctors and nurses know how they will be taking care of her.
The word is that the NG tube should come out today. The On-Q "party ball" was finished yesterday and came out. She is still on oxygen, but everything else came out the first day.
She has been pulling herself out of bed for the daily weigh in and for the changing of the bedding. Our independent little princess.

More to come. Just wanted to get a quick update out.

Elizabeth is recovering nicely

After 5 and a half hours of surgery, our little Princess is doing quite well. She looks the best post-op that she ever has, in spite of the amount of work that was done. No puffiness at all!

That was the good news.

And with good, usually there is not-so-good.

Everyone had expected a single nodal mass. Best case, it would be simple with no vessel involvement. Worst case, it would involve removing tumor that had encapsulated blood vessels that supply the small bowel. Well, it was even more involved than that.

Dr. Stein (the most incredible surgeon on the face of the planet) removed a large mass of what appears to be many involved lypmh nodes that had clumped together. This mass also involved the small bowel blood supply and appears to have started involving a portion of the small bowel itself. A foot section of small bowel was removed along with another about 2 inch section further down the tract. Everything in the tract was reconnected and Elizabeth will be going about 4 to 5 days before she can start on water to give it all a chance to heal. Oh, and that nasty NG tube will have to stay for at least that long, too. She's not thrilled, but she still looks good and is plenty well enough to be throwing around plenty of Princess-attitude, so we know she'll be fine for now.

As Dr. Marcio (our continued favorite oncologist on the face of the planet) explained while Elizabeth was still in surgery, we can start on some new combo-chemo treatments consisting of lower dosing on a more frequent schedule once Elizabeth has recovered. Hey, does anyone out there have a cure for cancer? (yes, that was a rhetorical question... *lol*)

Reality is that we are probably looking at less curative treatments and more maintenance treatments at this point. However, as we are continually reminded by our friends and family, miracles do happen. We'd like to assure all of you that we are doing everything in our power to facilitate that miracle as much as possible! If any of you have any personal experience (or even anecdotal) with an agent that slowed lymphatic progression, please post the name of the drug(s) and/or therapies in a comment here. We will be investigating any leads... *grin*

Please keep Elizabeth (and us!) in your prayers.

I hear from Dad that Elizabeth has had her first dose of pain medication at around 4am (she had not been on anything other than an anesthetic at the surgical site called "On-Q"--great stuff) and has been resting soundly ever since (it's about 9am now). Dad and Elizabeth had an agreement that he could stay with her the first night only if Mom could stay the rest of the time. Originally the hospital stay was going to be about 5 days, but now we are definitely looking at about 2 weeks. Mmmmm, hospital food... well, Elizabeth won't be forced to look at any of it for at least a week anyway while her digestive tract re-connections heal.

Thanks for checking in and take care.

Thank you Angel Janet and Angel Pat and Angel Barbara for your special notes and cards and presents. Princess Elizabeth is truly blessed to get mail from her "special angels who spoil her" (as she calls you), and her desk drawer is nearly overflowing with all the special cards she has received from you ladies and all the other special angels she has been blessed to receive so much from. We have rarely had three consecutive days without the Princess receiving some correspondence in the mail, and she really does light up when she finds an envelope addressed to her...

Surgery scheduled

Surgery is scheduled for next Wednesday, March 8. Elizabeth will have an AM admit and the surgery will be sometime in the afternoon. The appointment with Dr. Stein went very well. He is leaning towards thinking that he will be able to get good margins around the tumor. There is a possibility that the tumor is wrapped around the veins and arteries supplying the small intestine. The CT is unclear on this issue. If it is wrapped around the blood supply, he will have to first cut the tumor in half and then separate it from the vessels. This would not be ideal, because it would surely leave microscopic disease.
Given that her tumors tend to grow out and push things out of the way, it is most likely going to be a free mass that can be removed completely. That is what we are praying for now.
Elizabeth is actual quite excited about the surgery and her mood has improved now that she has a date to get that stupid tumor out. She even talked Dr. Stein into foregoing the NG tube with the "go lightly" before surgery. That was no fun last time!! Instead she will "clean out" with some good dosing of Miralax next Tuesday at home. Probably need to start a small dose on Monday, but it is far better than the NG tube before surgery. She will still get all the tubes during and after surgery and have to deal with that, but they are usually short lived and by the time the anesthesia wears off, she is taking them out.
Stay will most likely be about 5 days at Children's.

Till there is more news or just a need to vent...
Thanks for looking in on how Elizabeth is doing.
Dad