4 year old Alexandria of Pleasant Hill, Iowa was diagnosed with DIPG in February 2018. Please ker family in your thoughts and prayers.
"The neurologist came out before her MRI was even finished to go over some of the scans.
She has a large, cancerous tumor taking over the brain stem. The easiest way to explain would be to give this information.
Her tumor is called Diffuse intrinsic pontine glioma.
The fluid in her brain (the tumor is covering the hole for the spinal fluid to go down to the spine) is hydrocephalus.
We will be staying at the hospital over the weekend and they plan on doing surgery Monday. They will take a biopsy of the tumor to determine what stage it is; this will help them find the best chemo/radiation to do. They will also make a hole on the other side of the tumor so the spinal fluid can drain.
There will be a 2 day recovery and then we will head home (hopefully). We will not receive the biopsy results until Friday or the following Monday.
They are not able to remove the tumor as it is attached to nerves and her spinal cord. Unfortunately the research Korey and I have been doing has not been good. There is a 0% survival rate. Usually it is treated with radiation for 6 weeks and doesn’t return again until 6-9 months, but when it returns, it is far more aggressive and death usually happens 1-4 months later.
We are staying as positive as we can but also staying realistic. Please continue to send prayers.