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."