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.