Summer of 2007 my daughter Gianni began complaining of intermittent headaches, however, in true toddler fashion, the complaints usually coincided with a battle of the wills. We were only moderately concerned (she was so healthy!) and brought the symptoms to the attention of our pediatrician who suggested allergies or even just a behavior control issue. Veteran's Day weekend, my husband and I noticed her favoring her right side, a bit of a limp, and limited use of her left arm - we were definitely alarmed and brought her to her pediatrician first thing Monday morning. A CT scan was scheduled for the next day (Nov 13) at Mills Peninsula (the hospital where both our children were born) that procedure had to be rescheduled for the next day so that we could incorporate anesthesia – who ever heard of a two year old staying perfectly still for 20 seconds, let alone 15 minutes!
Apprehensive.
Wednesday’s CT revealed a large mass in her right frontal lobe. As soon as she came out of the anesthesia we were informed of the seriousness of what they had found and loaded into an ambulance for the 40 minute trip to San Francisco and into the capable hands of the neurosurgery team at UCSF.
Scared.
We were installed in the Pediatric Intensive Care Unit (PICU) and she was put on the books for an MRI to map her brain on Thursday and surgery on Friday (Nov 16). Surgery is the word they used to explain what was happening, but the real term is craniotomy . . . sounds so much scarier! Because of the emergent nature of her symptoms (they were getting worse by the hour), we never even considered the “surgery” as a choice we were involved in, it was an inevitability.
Terrified.
From a biopsy taken during the surgery, our daughter Gianni was diagnosed on November 16, 2007, less than 3 weeks before her 3rd birthday, with supratentorial primitive neuroectodermal tumor, or (sPNT), a highly malignant brain tumor similar to medulloblastoma - Cancer.
Devastated.
After reviewing a post-surgery MRI, Gianni's surgery was deemed a complete removal of her tumor (total resection). Although the tumor was removed, there is always a possibility that some cells (molecules) may have been left behind. The problem - if any cells remain they can start growing anywhere in her brain, spinal column, or bones. Tony and I spent the next two weeks researching/agonizing over a multitude of available treatments, sending her records out for third and fourth opinions, and reading the grim survival statistics and side effects of treatment. Every single option sucked – we were stuck with having to make a miserable choice.
Determined.
We ultimately decided on treatment with Dr. Paul Fisher and his team at Stanford's Lucile Packard Children's Hospital (LPCH). His specialty is clinical neuro-oncology, cancer of the brain – you can’t get any more focused than that! His research encompasses brain tumors in childhood with a particular interest in the neurologic effects of cancer and its therapies. We really felt that his team would allow us to explore aggressive treatment options while focusing on maintaining as high a quality of life after treatment as possible. The LPCH neuro oncology team offered a high dose chemotherapy treatment that could be tailored to Gianni’s response. Although radiation is the "industry gold standard" - at her age the radiation would wreak havoc on her developing brain (terms used to describe the side effects to us included, "inability to care for herself"). She was scheduled for eight 28-day cycles of chemotherapy (read minimum of 8 months). Each 28-day cycle includes eight days of intravenous chemo, one administration of intrathecal (an injection into the spinal canal) chemo, and various and sundry pokes, prods, and checks.
Resolved.
We could not be happier with the team of people - no, the family of people who are caring for her at LPCH. The journey is long and hard – and we are just sideline participants, she is the one on the treadmill. She is doing well; she gives us hope and strength daily. We are so very proud of her ability to adapt and maintain her fighting, fun-loving spirit. She is my hero.
