5 years old girl diagnosed with Ganglioglioma

Hi everyone,

I'm new to this chat. 

I'm writing to ask if someone had a similar situation and see what action you have taken. I will try to squeeze the long story into short.

In our family, a wee girl (when she was 5 yrs old) has been diagnosed with ganglioglioma. She suffered from headaches and nausea, and her mother was looking for a reason. After a brain scan, doctors diagnosed a brain tumor based on the brain stem. 

Doctors did emergency surgery in Jul 2019 to remove it. Afterward, the prognosis was quite positive, and said that it is benign ganglioglioma; there is no treatment as it is a rare disorder. They decide to monitor the tumor with scans to see if it is growing or no. However, some complications appear, and a shunt was inserted; after a couple of months, the shunt was extended as it could not reach a place in the brain to remove water. 

The girl suffered multiple surgeries over last year. Now again, she has been admitted to the hospital as she can't breathe and swallow. In the hospital, they also find out that she can't urinate either.

Now they are waiting for trial medication.

It is looks that over the year girl went weaker and weaker. My concern about this situation is that somewhere, something was missed. I think it was a lack of care or support for the family with this disorder. 

Maybe somebody also has been diagnosed with this tumor. What steps or decisions you made? 

Thanks x