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We took Vivian to Children's ER on 1/7/17 after her balance got worse and her speech was more slurred than usual. (Her baseline post treatment was that she had ataxia on her left side, gate impairment, and facial asymmetry.) She started showing new symptoms on the evening of 1/6/17. We thought she was tired. An MRI that weekend showed she had a lesion on her brain stem. We stayed at the hospital until Tuesday, and we were sent home. Her oncologist asked us come back for a follow up. Her symptoms got worse over the next day and we were re-admitted. An MRI was not possible, because of her respiratory rate. So, they did a CT scan on 1/11/ 17 and it showed that her lesion had doubled in size. We do not currently know if the lesion is a highly aggressive tumor or ischemia. The tumor is in a place where it cannot be biopsied and we can't do another MRI with her condition. She had a clear MRI in October 6, 2016. Our whole family is devastated by this news. Vivian is currently on Palliative Care at Children's and we cherish each day with her.
***Vivian Joy Worlein passed away with her parents at her bedside at 2:30 AM on 11 FEB 2017. Our comfort is knowing she is no longer in pain and is with the Lord in Heaven. May we be reunited again one day. Love you always, Ladybug.
(Original entry of her story below)
On 12 SEP 2012, an MRI revealed that Vivian had a brain tumor. She had surgery the following day to remove as much of it as possible. The pathology report concluded her tumor was a Medulloblastoma which is an aggressive brain cancer. Over the next 14 months, she received a combination of radiation and chemotherapy to kill whatever cancer cells remained in her pretty head.
Now that she is done with brain surgery, radiation, and grueling inpatient and outpatient chemotherapy, our next hurdle is to get as much of her mobility back as we can. We will continue to update you on that progress.
Her road ahead is a challenging one and we greatly appreciate your thoughts, prayers, love, and support. Thank You!