Hello! My name is Christina and my son is Noah. He is 13 now, but in March 2025 when he was 12, he was diagnosed with Metastatic Polycytic Astrocytoma with Leptomeningeal Disease. He's had 5 surgeries, 2 emergent and 2 brain surgeries; 33 sedated visits of Craniospinal Irradiation of his brain, spine, and tailbone, with 13 visits being boosted radiation in targeted areas of his left ventricle, brain stem, and tailed region. He is now in the uphill battle of significant weight loss; he has a NG tube where he receives 10 hours of feeding at night time. His side effects from the radiation were delayed, but when they hit, they hit him hard. We have been in the hospital so much since March, I bought a cot to sleep on because I threw my back out sleeping in the chairs! He had an ablation on October 8th of the large tumor that was taking up his left ventricle. He has recovered from that, thank god because he was starting to become very sick again. He is gaining weight slowly and his appetite is also slowly coming back. He is currently in surveillance as the LMD seems to have stopped spreading and his other tumors have also stopped growing. He will have MRIs of his brain and spine every 2-3 months. If within this time, things seem to be progressing again, the only option we would have is traditional chemo 1 day a week for 1.5 years. Fingers crossed we can beat the odds. 

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