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Angel Princess Elizabeth

about a little girl and her battle against pancreatic cancer...

2004
March: Elizabeth has oily stools after eating pepperoni pizza.
April: The oily stools start happening intermittantly.
May: Elizabeth starts having oily bowel movements every time she goes to the bathroom.
June 7: A visit to the pediatrician shows that Elizabeth is anemic. Oily stools suggest that she may have Celiac disease (a gluten allergy).
June 10: Elizabeth sees a gastroenterologist for the condition.
June 18: Elizabeth has an endoscopy/colonoscopy. A growth is found in the duodenum and biopsied, "just in case".
June 23: The first time we are told Elizabeth has cancer.

And treatment at UCLA begins...

June 24: CT scan confirms cancer in the pancreas, originally diagnosed as pancreatoblastoma.
June 30: Elizabeth has surgery to remove her entire pancreas, duodenum, spleen, and gall bladder.
July 18: Chemotherapy starts! Cisplatin and Adriamycin (doxorubicin) agents are used.
October 21: Marks end of 4th round of chemo.
October 28: Elizabeth's AFP levels are finally NORMAL and doctors say she is "cancer free".

Fast forward to February 15, 2005...


We find out that Elizabeth's AFP levels were very elevated as of January 27.
March 1: A PET/CT scan shows cancer growth in the liver and abdominal areas.
March 8: MRI confirms that Elizabeth has metastases throughout her liver and in the abdominal lining (peritoneum).
March 9: UCLA offers palliative treatment options.

Consultations with St. Jude's Research Hospital and Children's Hospital Los Angeles begin...

March 18: We meet with Dr. Marcio Malogolowkin at Children's Hospital LA. Treatment options are discussed. Elizabeth's cancer is rediagnosed as acinar cell carcinoma of the pancreas. Dr. Marcio becomes Elizabeth's new oncologist.
March 24, 2005: Elizabeth started a new regimen of chemotherapy (gemcitabine and oxaliplatin) aimed at curing her cancer at Children's Hospital Los Angeles.
April 14: Round 2 of GEMOX chemo
May 5: Round 3 of GEMOX chemo
May 18: Round 4 of GEMOX chemo
June 1: Right hepatic lobectomy (removed right 2/3 of liver) and peritoneal tumor removals performed by the amazing Dr. Jim Stein

June 22: Round 5 of GEMOX chemo (round 1 post-op)
July 19: Round 1 of Avastin/IFL chemo
August 9: Round 1 Avastin/IFL ends early with hospital admission
August 9 - August 23: Hospital stay for bile leakage, possibly aggravated by Avastin
August 18: Round 2 IFL chemo (NO Avastin this time)begins, AFP hovering at 200-300
September 27: Round 3 IFL chemo
November 1: CT scan indicates possible lung tumors, AFP up to 365
November 21 - November 23: Inpatient for lung biopsies -- NEGATIVE for malignancies

November 29: Round 4 IFL chemo
November - December: AFP tumor marker levels continue to rise to 486, changing treatments is discussed
December 13: Avastin treatment, anti-angiogenic factor is retried at half-strength, AFP at 611
December 27: Avastin treatment at full-strength, AFP level holds at 600

2006
January 4: PET/CT scan suggests lymph node activity in the abdomen where Elizabeth's pancreas used to be
January 10: Avastin treatment, AFP down to 311 after one full-strength treatment
January 24: Avastin treatment, AFP back up to 600
January 28: Oral medication Tarceva is started daily
February 7: Avastin treatment, AFP up to 964
February 16: AFP up to 1330, CT scan indicates retroperitoneal tumor, most likely para-aortic lymph nodes; ALL treatments stop (Avastin, Tarceva) in preparation for surgery
March 1: Surgical consult with Dr. James Stein, CHLA
March 8 - March 17: Inpatient for tumor resection surgery -- more tumor is found than was expected, two total large tumors. All tumor is resected, including a foot section of small bowel due to blood vessel crowding by the tumor, and a 2 inch section of small bowel that could have grown into an obstruction. Dr. Marcio Malogolowkin informs us that there is most certainly microscopic disease spreading, most likely lymphatically, and suggests more palliative options (instead of curative treatments).
March 28: AFP 229
April 19: CT scan shows new tumor (small marble sized) in right bottom lung area--first known lung metastasis

April 21: Start Sutent (sunitinib, a 3-pronged anti-angiogenic agent) oral medication on a 4 week on, 2 week off regimen, AFP 601
May 5: Round 1, Day 15 Sutent (half way through on-Sutent phase), AFP 489
May 19: Round 1, Day 29 Sutent (end of on-Sutent phase, start off-Sutent phase), AFP 660
June 2: Round 2, Day 1 Sutent (end of two-weeks off Sutent), AFP 2500
June 16: Round 2, Day 15 Sutent (half way through on-Sutent phase), AFP 2700

June 20 - July 21: Inpatient at CHLA for lung fluid collection. It is believed that the anti-angiogenic mechanism(s) of the Sutent caused a “bleed” similar to the August 2005 Avastin related complication. Three chest drainage tubes were put in and taken out at various times, and a VATS procedure in which infected tissue was removed finally solved the overriding problems caused by the bleed.
June 30: Round 2, Day 29 Sutent (first day off Sutent)
July 10: CT scan shows no identifiable new tumors, and stable lung tumor
July 18: AFP 6600 (a new all-time high)

July 26: Meet with Dr. Marcio. Sutent is ruled out for continued treatment (because of the bleed), and a metronomic approach (steady continual low-dose chemo) of 37.5 mg daily Cytoxan (cyclophosphamide) and weekly infusions of vinorelbine is decided on. Rounds will be 28 days long, with cyclophosphamide given every day and vinorelbine given on days 1, 8, and 15.
July 28: Round 1, Day 1 cyclophosphamide/vinorelbine (CY/VIN), AFP 15,900 (still rising)
August 11: Round 1, Day 15 CY/VIN, AFP 27,500
August 25: Round 2, Day 1 CY/VIN, AFP 39,900
September 8: Round 2, Day 15 CY/VIN, AFP 51,100 (still rising)

COMING NEXT...
September 15: CT scan scheduled to determine future treatment and surgical options.

Current updates can be found by visiting Elizabeth's Story weblog

Journal

Tuesday, February 20, 2007 9:56 PM CST

Elizabeth heart
November 3, 2006

Elizabeth passed away on February 19, 2007, at 2:15am.
She was in her mother's arms in her own bed with her Dad and her hospice nurse Karen, surrounded by love.

Services are still in the planning stages, and details such as place and time will be updated here as soon as they are finalized.

Please visit Elizabeth's weblog page at www.elizabethhill.blogspot.com for more frequent updates and details.

Thank you for your prayers.

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Hospital Information:

Children's Hospital Los Angeles
4650 W. Sunset Blvd.
Los Angeles, CA 90027
Playing in Heaven, free from treatment

Links:

http://www.elizabethhill.blogspot.com   Elizabeth's Story blog
http://www.sharethelove.org   Share the Love, other caringbridge pages
http://www.mhf.org   Michael Hoefflin Foundation - our favorite charity


 
 

E-mail Author: eahill88-caringbridge@yahoo.com

 
 

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