Seeking Brain Tumour - Choroid Plexus Tumor

Hi everyone,

My 3-year-old niece just got diagnosed with a very rare form of brain cancer (Choroid Plexus Tumor)3 weeks ago. As it is rare, cases of such around the world are small. I write to you who can share your or your loved one's experience on brain cancer. If you know of other people or organizations who are familiar with this type of cancer, do reach out to me.

We need to understand what procedure and which medical institution be able to provide the best for this little girl. Time is of the essence as it is aggressive.

The discovery of the Cancer was when her parents noticed one eye swelling and line on her sclera, they took her to an eye specialist who advised on an MRI brain scan. the MRI showed a heterogenous and lobular mass within the brain at the left parietal region. It showed an enhancing intradural extramedullary 0.5 cm nodule on the posterior aspect of the C7 spinal cord suspicious for a leptomeningeal metastasis. During the biopsy, she bled quite a lot. 

Owing to the vascular nature of her tumor, the doctors advised the following treatment: do a biopsy and follow up by a Chemo regime before proceeding to remove the tumour in its entirety. The chemotherapy will be for 6 cycles. She had her first cycle of 2 days last week and her 2nd cycle will be in 2 weeks' time. This will be followed by an MRI scan middle of December.

We are feeling very lost due to the complex nature and the high risk. In an ideal scenario, she would be operated on and the tumor removed by now. I seek to ask you whether this course of action is best or there is another way.