Oscar’s Brain Tumor

Quick into.. Hi my name is Lily and my boyfriend’s name is Oscar. We have known each other since middle school and have been dating for two years now. (Picture from December 2023 in the hospital)

We found out Oscar has a fatal condition a very serious and rare brain tumor called a Diffused Midline Glioma stage 4 on 02/16/24. 

Back in the beginning of December (2023) when we first made this GoFundMe we found out Oscar had hydrocephalus, “A build-up of fluid in the cavities deep within the brain. The extra fluid puts pressure on the brain and can cause brain damage…” which made him have blurry vision, dizziness, and memory loss.

He had to have surgery to install a permanent Shunt “A hollow tube surgically placed in the brain (or occasionally in the spine) to help drain cerebrospinal fluid and redirect it to another location in the body where it can be reabsorbed…” which relieved the issues for a little while.

We needed money to keep up with bills while Oscar was in the hospital, and after he got out so he could heal. We raised a little over 600, I still worked to cover most of the bills and his family helped. I would eventually need to miss work every now and then to take care of him or to take him to appointments so the 600 really helped with the bills. 

While they were looking for what caused the hydrocephalus, they found a mass on his brain which was blocking the flow of the cerebral spinal fluid. They couldn’t identify what the blockage was, we were in and out of different specialists offices all throughout January and the beginning of February trying to figure it out. 

Because of him having vision changes, (end of January, beginning of February) 

he had to get another MRI done when which is when they found out that the mass in his brain was growing, he had to get an emergency Biopsy on 02/8/24 “a procedure to remove a piece of tissue or a sample of cells from your body so that it can be tested in a laboratory.” 

Oscar has been different ever since the biopsy (still is). Confused, mixing up his speech, and his vision was still blurry. We were hoping that this was all normal, and that it was just post confusion after the biopsy. 

On a Thursday (02/15/24) he had multiple seizures and spend the whole day in the ER, until he was stabilized and safe to bring back home. We had an emergency appointment with his primary doctor the next day. 

They had the results of the biopsy. 

That’s when they told us he has a rare type of brain tumor called a Diffused Midline Glioma stage 4, “..Diffuse midline gliomas are all grade 4 tumors (also written as grade IV). This means they are malignant (cancerous) and fast-growing..”

This type of tumor doesn’t respond to chemo, is most commonly found in children, and because of where it’s located, close to the spine, they can’t extract it without serious neurological risk. 

He will have to get radiation therapy to slow or try and shrink the growing process.  Supposedly once he starts radiation some of that brain fog will go away, and he should start being more like himself. After radiation he is volunteering for an experimental study with the drug that is not FDA approved yet that gives patients in his condition, a couple more years in some cases.

Depending on how well he responds to the experimental drug there’s a second trial with another variant of that same drug. 

This type of tumor is fatal.. “The average (median) overall survival for people with diffuse midline glioma (DIPG) is less than 1 year – generally ranging from 8-11 months. About 10% of people survive at least 2 years after diagnosis. About 2% of people survive at least 5 years after diagnosis.”

We’re asking for money to help plan ahead. We know what’s coming and while we are hopeful that he can beat the odds, we want to be prepared just in case… 

This money would help with any bills medical or otherwise, pay off any debts (to avoid being passed to next of kin), set aside money for the funeral.. and just anything else he might need. I want his last year/years to be happy he deserves that much. 

Please if you can any little bit would help! ❤️

Or share it if you can’t ❤️