Anna is our baby girl who had AT/RT brain cancer, that started as a single tumor in her fourth ventricle/ posterior fossa, but spread in both her brain and spine. After multiple rounds of chemotherapy, stem cell transplants and radiation, her cancer returned. Anna passed away peacefully at home on February 19, 2012. In the beginning of December 2010, Anna vomited and then spiked a fever. She started holding her head to the left that evening as well.
We controlled her fever, didn't notice the head tilt as much and she got over her cold in about a week. Following her cold she started vomiting again. After multiple visits to the pediatrician over many weeks, we eventually found ourselves at the hospital to treat Anna for reflux.
After a week of treatment for reflux without relief for Anna, she was taken for an MRI. The MRI that was supposed to take 30-45 min took 2 hrs. In the recovery room we were met by 2 neurosurgeons. They brought us to a MD consultation room to break the news that they found a moderate size tumor in the lower part of Anna's brain.
After the initial shock and disbelief, we've been tracking Anna's updates in the journal. It helps us keep track of her progress, at the same time as updating everyone else as well.
Treatment Summary Anna's cancer is Atypical Teratoid Rhabdoid Tumor (ATRT). After her partial resection, it spread to new brain lesions and spread to her spine. Her CSF was also positive for cancer cells.
Anna has a double-lumen broviac, g/j-tube and VP-shunt. A 3rd ventriculostomy was done at the same time as ommaya reservoir surgery. Hydrocephalus came back, so the ommaya was replaced by the VP shunt.
Started on Dana Farber protocol, until Anna had a brain bleed/ seizure. Transitioned to the COG ACNS0333 protocol. Anna remained in the hospital for 3 months following the resection surgery and initial chemotherapy. Her hospital time was split between the PICU and oncology unit. Post surgery, she can no longer fully swallow, so she is entirely J-tube fed. She suffered from posterior fossa syndrome, including irritability, along with loss of swallow and speech. Anna suffers from partial hearing and vision loss from either her tumor or treatment. She has motor skill deficits that are improving with OT and PT. During her induction chemo, she also suffered from colitis, a collapsed lung, pneumonia, infection, tachycardia and congestion/breathing problems.
Between May and August, Anna completed 3 autologous stem cell transplants at Strong Memorial in Rochester, NY. She suffered from a infusion reaction that sent her to the PICU, mucositis, fever, sepsis, fatigue, tachycardia, bradycardia, hypertension, and breathing/oxygen saturation issues.
After all this treatment, she still had refractory tumors in her spine.
Anna tried a medulloblastoma relapse protocol, but her tumors continued to grow and a new tumor in her brain appeared on her scans.
In October 2011 Anna suffered from spinal cord compression related to one of her tumors, along with the growth of multiple other spinal tumors. She had 10 days of radiation including stereotactic radiation to the lesion that was compressing her cord.
In November 2011 Anna started on a 5-drug Kieran metronomic anti-angiogenic regime.
Anna had positive scans until January 2012, when 2 new tumors were found.
February 7, 2012 MRI showed aggressive cancer spread in her brain and spine. Anna entered into Hospice care on February 13, 2012.
Sadly on February 19, 2012, Anna passed away with her parents by her side and her family nearby.