please help us understand
 

My 4 year old step daughter has had astocytoma since birth, has had surgery and chemo and a shunt placed. Recent MRI shows has changed from low grade to high grade and is currently receiving radiation a copy of the recent MRI is below, we were told nothing could be done and would only have a 50% chance to make it a year. We dont fully understand the results so anything you could offer would be helpful. We also don't understand how she can act so normal with all this going on..

She had an MRI of the spine and head. The results of spine were 1)Interval cephahad and caudal progression of the diffuse expansile heterogeneous cervicothoracic cord from C3 TO C4 midlevel to mid T11. 2) Interval marked progression of the disseminated leptomeningioma metastases throughout the spine with clumping of the nerve roots. For the MRI of the head. 1) interval marked progression in the leptomeningioma carcinomatosis with minor nodule leptomeningeal lessions now appearing more conglomerate and disseminated.2) Diffuse enhancement along the seventh and eighth and hypoglossal nerve, likely part of the leptomeningeal metastases. 3) Non0Visual if the the trigeminal nerve, likely encased within the leptomeningeal metastases. 4) Major visualized intercranial, flow voids are intact.5)Stable left parietal ventriculostomy cather with like ventricles.

Bless your hearts. I'm so sorry that you're dealing with this dreadful disease. Those findings are a little over my head, but I'm going to contact a mother who is struggling with her son. She's found alternative help with vitamin dosing. I can't give you the specifics on that, but the last I heard, she'd left KY with him and was in California and he was in ICU but going to get out and go to a treatment center there. Little Jordan has been through soooo much. His mother knows he's an angel already.

My heart goes out to you and your child and family.

Big hugs :hug: