Good News... Perhaps

Yesterday Elizabeth had trace blood in one of her bowel movements. We, of course, started to worry and left a message for her GI docs at UCLA. Dr. Robert Venick (whom we absolutely love) called us today to explain what bloody stools mean in Elizabeth's case.

The bad news: we need to watch for anemia
The good news: in kids with liver tumors, bloody stools during chemo usually means that the tumor cells are being killed and therefore the tumors bleed a little

So... this could be a great sign that the chemo (GEMOX) Elizabeth is taking is starting to work on those liver tumors. YAY!!

She also had her home care nurse from her first treatments all fall back to do her blood draw today. Denise Companero, her nurse, is wonderful with Elizabeth... very tolerant of her games and tendency to climb onto Denise's lap. We are very lucky to have her back--even if it is only until she goes on maternity leave.

In spite of being in the "danger zone" when counts should be dropping and Elizabeth should be feeling the effects of her chemo the most, Elizabeth is doing very well. She has been a little cranky, but all in all she's just fine. We dyed Easter eggs on Saturday, as planned, and had a quiet Easter celebration at home. We would've spent the day with cousins and lots of their extended family, but we were worried about exposing Elizabeth to too many new germs with so many kids around. Hopefully next time we can go!

Today Elizabeth went to dance class. There are only 3 of them in Thursday's class (less germs!), and Elizabeth needs to get out of the house some time, even if it is only for an hour. She gave her friend Heather (who works at the dance studio) a "LiveStrong" bracelet (available at www.laf-store.org). Heather wrote Elizabeth's name on it so everyone will know who she is supporting by wearing the bracelet. That was incredibly sweet and thoughtful and made Elizabeth feel most special!

Thank you all who have been praying for Elizabeth. Your messages of support have been a tremendous source of strength for us. Please know that we are so grateful for your kind words and prayers.

A "Normal" Day

Today was as normal as it could be... Elizabeth and Matthew played and fought and watched DVDs just like normal pre-schoolers do. Both of them were bouncing off the walls all day and during Mike's Cub Scout meeting tonight (He is now an official Boy Scout--Congrats Mike!). You could never tell that Elizabeth has cancer throughout her liver and just finished getting chemo 2 days ago if you saw her. She seems like any other normal 4 year old. Except she's not.

We got our order from www.choosehope.com in the mail. Mom and Dad got buttons that say "My Daughter is my Hero" with gold ribbons. Mike got a button that says "Cancer Sucks". He proudly wore it to school today, along with his yellow "LiveStrong" bracelet (which we bought at www.laf-store.org). Mom and Dad also got gold ribbon car magnets (very similar to the Support Our Troops car magnets) that say "Childhood Cancer Awareness". It helps sometimes to show other people what is always on our minds so they remember, too.

This is Mom here: I've been reading about several other cancer kids. Some are still fighting, and others have lost. I hope that as you read about Elizabeth, and other kids like her, you don't just think "glad it's not me" and forget about our stories tomorrow. Because it could be you or family or friends next week, month, or year. Please remember that every moment spent with people you love is precious. Hug your kids. Tell them you love them. Now. Be thankful for being "normal." And please remember to pray for the kids who aren't "normal" any more. Miracles still happen.

First Round Completed!

Elizabeth will be coming home today, having completed her first round of this course of chemotherapy. She is doing very well. Children's Hospital Los Angeles (CHLA) has a McDonald's restaurant on its first floor, and it seems that while Elizabeth "isn't hungry" when the hospital food arrives, she does get hungry for McDonald's. She had her first Big Mac on Thursday night (her first night at CHLA), along with fries and some chicken nuggets. Apparently she found her appetite at 10:00pm, and Dad was happy to oblige.

Upon arriving at CHLA, we met with Dr. Malogolowkin and our nurse case worker Patricia Rios to discuss Elizabeth's treatment. She will get GEMOX chemoterapy for 2 rounds, then a CT scan to see if she is responding to treatment. At that point we will discuss continuing more chemo. Her AFP level was 1460 on Thursday. It was 735 on March 16, only 8 days earlier. Now hopefully the chemo will start bringing it back down (an AFP of 5 is normal) as the cancer cells are killed off.

Elizabeth started her 90 minute infusion of gemcitabine at 11:00pm on Thursday, March 24. She tolerated it very well. No nausea or vomiting, although she was cranky as ever on Friday (her anti-nausea medicine decadron does that to her). Mom, Mike, Matt, and Danny spent the entire afternoon with Elizabeth and Dad at the hospital. Matt and Elizbeth had a great time in the play room with the foam paint. Pretty cool stuff--just like colored shaving cream. Elizabeth thought it looked like pink hair mousse, so you can guess what happened there... her hair is a very lovely shade of pink, though. She was also visited by a friend of a friend (who also works at CHLA and is very good to know!), Maureen, who brought Elizabeth a new baby doll and Care Bear. Unfortunately, Elizabeth was in her cranky fiesty mood and was rather rude. We'll have to make a point to visit Maureen when Elizabeth is more like her normal self so she can meet the "real" Elizabeth.

Last night (Friday) she got the 2 hours of oxaliplatin started at around 5:30pm. She was a little nauseated from that one, but all in all she took it much better than most do. She is scheduled for discharge this morning (YAY!) and will be home so the Easter Bunny can find her here instead of at the hospital. If she is feeling up to it, we will dye Easter eggs later this afternoon.

Thank you all for your thoughts and prayers. We are very hopeful that we'll see some positive results. So far, so good...

And We Have a Starting Point...

Elizabeth is scheduled for admittance to Children's Hospital Los Angeles tomorrow. We will be meeting with Dr. Marcio Malogolowkin to discuss specific regimens and dosings, but the two agents that will most likely be used are Gemzar (gemcitabine) and Eloxatin (oxaliplatin). These two drugs (more like "poisons") have been shown to work well on pancreatic adenocarcinomas in adults. We are hoping to walk the fine line of giving her plenty of poison to kill the cancer, but not kill her in the process. She's tough and can take an awful lot, though.

Michael (dad) will be staying in the hospital with her since baby brother Danny breastfeeds and needs mom around. Emilie (mom), big brother Mike, and little bros Matt and Danny plan on visiting Elizabeth quite frequently. Nice thing about a children's hospital is that it is kid-friendly!

We'll let you all know how things are going once chemo has started. Please keep Elizabeth in your prayers... miracles happen. We hope this chemo is a step in the right direction...

Elizabeth did go to dance class today, and if her counts are up and she's feeling well she can go again next week. The Easter Bunny will have to visit Elizabeth in the hospital since she probably won't be discharged until late Sunday. I hope he can find some good hiding places for eggs in the hospital room...

October 16, 2004: Family Picture Day at Camp Ronald McDonald for Good Times. (L to R) Matthew (age 3), Emilie (Mom), Daniel (in utero!), Elizabeth (age 4 1/2), Michael (Dad), and Mike (age 10). It just occured to me that Matthew is wearing the same shirt in the picture with Barbie... he does have other clothes, honest...

New Diagnosis

The liver tumor biopsy results are in from UCLA... and the pathology is acinar cell carcinoma--NOT pancreatoblastoma as originally assumed. Well, at least now we know why her cancer was not behaving like a typical "blastoma" cancer...

We talked to Dr. Sherri Spunt at St. Jude's today (before we had the biopsy results). When we brought up the idea that Dr. Marcio Malogolowkin brought up regarding blastoma vs. carcinoma, she responded quite the same way he did. She suggested trying some carcinoma targeting chemotherapy agents (i.e. Gemcitabane, vincristine, 5-fluorouracil) before looking into the phase I trials (using primarily irinotecan) at St. Jude's.

We are moving her primary oncology care from UCLA to Children's Hospital Los Angeles. Dr. Marcio will be her primary oncologist. We have never felt more comfortable or confident in a doctor's abilities, except for Dr. Doug Farmer (Elizabeth's surgeon at UCLA) who is equally great. So, for now anyway, we are staying local for treatment. We are trying to facilitate a collaboration between Dr. Spunt and Dr. Marcio so that in the future, if need be, we can pursue further treatment at St. Jude's easily.

Hopefully we'll be starting a new chemo regimen later this week at Children's. I'm sure Elizabeth will want to pack her fairy wings so she can flitter up and down the hallways in the hospital before being hooked up to chemo (can't leave the room then).

March 19, 2005: Elizabeth and brother Matthew (age 3 1/2) meet Barbie as Elina from Fairytopia at Toys R Us in Porter Ranch, CA. Barbie said she would hang up the drawings from Elizabeth in her castle and think about Elizabeth everyday when she looked at them. You can't tell in the photo, but Elizabeth wore her own fairy wings, too!!

March 17, 2005: Elizabeth doing "butterflies" (her favorite!) in Miss Rosie's dance class one day after her liver biopsy... Isn't she amazing?!

Dr. Marcio

Yesterday we met with Dr. Marcio Malogolowkin at Children's Hospital Los Angeles. He is the solid tumor specialist and knows his stuff. We were very impressed. From the moment he entered the room, Dr. Marcio (what he goes by since his last name is hard to pronounce) engaged Elizabeth in our discussion. He was very good about talking to her instead of just about her. He also was very open with us about his thought process when trying to determine the best course of treatment for Elizabeth. It was the first time we felt like the doctor wanted to make decisions with us instead of for us.

Unfortunately, there is still no clear cut answer as to how to treat Elizabeth's cancer. The pathology of her cells shows components of both pancreatoblastoma and acinar cell carcinoma, but is missing clear markers to determine one over the other. Her genetic testing was not positive for pancreatoblastoma, but that doesn't rule it out as a possibility. At this stage of treatment, knowing the type of cancer is critical in determining the best chemotherapy agents. For pancreatoblastoma we are looking at a particular set of "blastoma" proven agents and for acinar cell carcinoma we are looking at agents proven effective in treating adults with the disease. We thought pancreatoblastoma was rare with only about 150 cases worldwide making it into the medical journal literature, but acinar cell carcinoma is virtually unheard of in children and certainly not written about. It's possible that other cases have existed, but were misdiagnosed as pancreatoblastoma. Regardless, there is still no hard and fast treatment to look to for Elizabeth. Dr. Marcio was hopeful that the biopsy done on Elizabeth's liver tumor (taken Wednesday at UCLA successfully) would exhibit a more clear pathology and lend some insight as to what agents would target Elizabeth's cancer best.

We also heard from Dr. Galindo from St. Jude's Reseach Hospital. Good news there as well... Elizabeth does qualify for two irinotecan based clinical trials. They would like to fly Elizabeth and a parent out as early as Tuesday to start treatment.

So there lies the dilemma... high dose irinotecan at St. Jude's or lower doses of specific agents geared towards Elizabeth's exact pathology at Children's. We are researching the chemotherapy agents Dr. Marcio discussed with us, as well as irinotecan's past track record with metastatic solid tumors. Hopefully by Monday we'll have a better idea of what direction we are heading in, be it at Children's locally or St. Jude's in Memphis. These decisions aren't easy. We were praying that even one doctor would be willing to aggressively treat Elizabeth in hopes of a cure, and now we have two very viable options. We have faith that God will help guide us in the right direction for Elizabeth.

Elizabeth is doing very well, despite her elevated AFP of 735. She had her biopsy taken on Wednesday, and was fine for ballet on Thursday. She is a very amazing little girl. She was very excited to meet Barbie as Elina from Fairytopia today at the local Toys R Us. Pictures should be up soon... Dan the manager there (Porter Ranch, CA) was helpful in arranging for Elizabeth to meet with Barbie early away from the crowd. Elizabeth was so glad to be able to give Barbie three different drawings she made based on the Fairytopia characters in person. Barbie said she would hang them up in her castle and think about Elizabeth every day when she looked at them. It was a very special day for us.

Children's Hospital update

Dr. Marcio Malogolowkin at Children's Hospital Los Angeles will meet Elizabeth and discuss options for treatment on Friday, March 18, at 3:00pm.

St. Jude's Research Hospital is scheduled to start reviewing Elizabeth's case today sometime. We are praying that they will want to offer treatment and see Elizabeth next week.

Elizabeth will be having her needle biopsies today at 2:30pm at UCLA. Recovery should be quick and hopefully Elizabeth will be feeling well enough to go to her ballet class tomorrow. She loves ballet, especially "creative movement" time when she gets to dance around to Disney princess music while waving a wand.

June 27, 2004: Elizabeth as Sleeping Beauty at Disneyland... 3 days before surgery 

March 9, 2005: Elizabeth in Miss Rosie's Dance Class 

March 11, 2005: Elizabeth wearing her Easter dress a little early

Elizabeth's Story

Elizabeth Anne is our 4 year old daughter who is battling pancreatoblastoma, a rare pediatric cancer of the pancreas. Since things are changing so quickly, it was suggested to us that we set up a webpage with updates that friends and family can read to get the latest information. Feel free to share any information that we post here. It is our hope that a miracle will happen and Elizabeth will be cured. Please pray.

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A brief recap:

2004
March --Elizabeth starts having occasional oily stools.
May --Oily stools are increasing in frequency; Elizabeth starts to have dark circles under her eyes.
June 7--Elizabeth sees her pediatrician; bloodwork indicates anemia.
June 10--Elizabeth sees a pediatric gastroenterologist, Dr. Ron Bahar of Encino, CA. He thinks she has Celiac Disease (a gluten allergy) and schedules an endoscopy/colonoscopy.
June 18--Elizabeth has her endoscopy/colonoscopy with Dr. Bahar. A "polyp" is found in the duodenum and a sample is taken for biopsy. Her colonoscopy is clear.
June 23--Dr. Bahar calls and tells us the biopsy is positive for malignancy. It is unclear what type of cancer it is. A CT scan is scheduled at UCLA for the following morning.
June 24--Elizabeth's first CT scan at UCLA. Shows tumor in the head of the pancreas approximately 5 cm in diameter.
June 28--Elizabeth is admitted to UCLA and we meet the oncologists and surgeons who will be handling her case. AFP level->600
June 30--Dr. Doug Farmer of UCLA's Liver Transplant Department and his team (including Dr. Beau Kelly) perform a pancreatoduodenectomy and splenectomy. The tumor is worse than the CT was able to show and has necrotized the entire pancreas. Elizabeth loses her pancreas, gall bladder, spleen, and duodenum. Her first broviac line is put in.
July 19--Elizabeth goes home, recovered from surgery.
July 30 to August 2--1st round of chemotherapy: doxyrubicin (adriamycin) and cisplatinum.
August 12--Elizabeth starts to lose her hair.
August 17--Elizabeth's first PET/CT scan at UCLA.
August 19 to August 22--2nd round of chemo.
September 9 to September 12--3rd round of chemo.
September 27--2nd PET/CT scan.
September 29--1st MRI scan.
September 30 to October 3--4th round of chemo.
October 15 to October 17--Family Camp at Camp Ronald McDonald for Good Times. Dad, Mom, Mike, Beth, and Matt have lots of fun participating in group activities and play time with other families dealing with childhood cancer. Elizabeth starts "baring" her head and going bandana-less now that she sees other bald kids doing it.
October 23--Wishes Granted gift delivered to Elizabeth from Canyon College and Michael Hoefflin Foundation. Elizabeth gets Ariel dress-up costume and accessories along with lots of other fun girly play things.
October 28--AFP level-5
December 7--UCLA pediatric Hem/Onc Christmas Party. Elizabeth, still bald, wears a tiara and is the princess of the party. She comes home with a Barbie Princess Castle house and Mike and Matt get matching remote contol stunt cars.
December 11--Camp Ronald McDonald for Good Times Christmas Party at Warner Brothers Studio Ranch. Mike, Beth, and Matt come home with even more goodies and have a great time playing and running around.
December 23--The family sees Disney's Monsters, Inc. on Ice, compliments of the Michael Hoefflin Foundation. We enjoy sitting with Abby Duran and her family who are currently fighting leukemia.

2005
January 27--AFP level-104
February 15--We finally find out the AFP results for January's blood draw. A PET/CT is scheduled to look for cancer growth.
March 1--Elizabeth has the PET/CT at UCLA. It shows activity in her liver and abdomen. AFP level-235
March 8--MRI scan at UCLA. Shows two large tumors in the right lobe of Beth's liver, about 15 lesions throughout the liver, and two tumors in the abdominal lining (peritoneum).
March 9--Tumor Review Board at UCLA. Surgeons determine that the tumors are inoperable, and the oncologists decide to pursue palliative treatment options. When we ask about a more aggressive approach in the following days, we are basically told that UCLA does not offer that option in this case. We begin to actively search for an oncologist elsewhere willing to fight Elizabeth's cancer with the most aggressive agents available to give her the best chance.

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Currently...

We are working on finding alternative treatments for Elizabeth's case. We will be seeing Dr. Marcio Malogolowkin at Children's Hospital Los Angeles on Thursday or Friday of this week. He is a solid tumor specialist there, and we have heard very good things about him from other parents. He is reviewing Elizabeth's case summary, her PET/CT and MRI scans, and tissue sample slides in preparation for our second opinion meeting. We are hopeful he will have some ideas about which aggressive treatments are possible.

Dr. Sherri Spunt at St. Jude's Research Hospital in Memphis, Tennessee, is also working on reviewing Elizabeth's case. She was overnighted the scan files and case summary on Friday, March 11. We are currently trying to get surgical pathology at UCLA to rush tissue slides to St. Jude's today. Their Review Board meets tomorrow, Wednesday, March 16. Dr. Spunt is on vacation this week, but a fellow doctor has been briefed on Elizabeth's case and hopefully will be able to discuss treatment options with the board in Dr. Spunt's place. Upon initial review, Dr. Spunt believed that Elizabeth was possibly a candidate for a few of their clinical studies. She may be able to see Elizabeth as early as March 23 if we are accepted.

Elizabeth is scheduled for needle biopsies of her liver and abdominal tumors at UCLA tomorrow afternoon. They will be using a CT scanner to guide the needle and she will be under general anesthesia. The doctors at UCLA are looking to see if her particular cancer cells have changed general structure type in order to determine which chemotherapy agents may be more effective than others. They still are of the opinion to start her on milder chemo rather than stronger agents. We disagree, hence the appointment with Dr. Marcio and correspondance with Dr. Spunt. We have also contacted Dr. Meyer at Memorial Sloan-Kettering in New York for consultation, but the channels there are moving slowly.

That is about as much as we know right now. We will be updating and posting more news as we get it. Please remember Elizabeth in your prayers. We have met other families who have been faced with similar prognoses and whose children have beat the odds and proven the doctors wrong. We know that miracles do happen and we pray our family will be blessed with a miracle of our own.


Psalm 55:16-18, 22
"But I call to God, and the Lord saves me. Evening, morning and noon I cry out in distress and He hears my voice. He ransoms me unharmed from the battle waged against me, even though many oppose me... Cast your cares on the Lord and He will sustain you; He will never let the righteous fall."

Psalm 91:11, 14-16
"For He will command His angels concerning you to guard you in all your ways... 'Because he loves me,' says the Lord, 'I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation.' "

John 14:12-14
"I tell you the truth, anyone who has faith in me will do what I have been doing. He will do even greater things than these, because I am going to the Father. And I will do whatever you ask in my name, so that the Son may bring glory to the Father. You may ask me for anything in my name, and I will do it."