Dear family, friends, and community,

Thank you for taking the time to read our story. We would greatly appreciate it that if you feel comfortable, to share our story as well.

On March 21, 2024, we heard a sentence most hope to never hear: "You have a brain tumor."

For weeks prior, Robert had been experiencing headaches that were severe and quite debilitating at times. On the night of March 21, Robert went to the emergency department because he was having a severe headache that was making his brain feel like it was melting. They did a STAT CT which revealed a 4.6x3.8x4.2 cm tumor with cystic portion in the right frontal lobe protruding into the right frontal horn and body of the ventricle. He was admitted and neurosurgery was consulted. They started him on the usual meds to reduce swelling and his risk for seizures while he was inpatient awaiting surgery.

On March 27th, 2024, he underwent a craniotomy to resect the tumor and cyst. Surgery was complicated. The cystic portion of the tumor kept breaking apart. During one part of the surgery, it is believed he had a seizure because his left arm became incredibly stiff and he balled his fist up so tight the OR staff couldn't loosen it up. After a few hours, the surgery was complete and he was released to PACU where I was informed that he had left hemiparesis (partial paralysis of his left arm) when he woke up from surgery. By the grace of God and Robert's diligent physical therapy, this resolved rather quickly (within a couple weeks). He was released a few days later, feeling great.

Six weeks later, he had his second postoperative appointment to discuss his first postoperative MRI results. Around this time, Robert's head and eye pressure started to return as well. We found out a lot of information at this visit...

Pathology came back from the University of Michigan. He was diagnosed with a papillary glioneuronal tumor (PGNT). These are very rare with an occurrence of less than 0.02% of brain tumors; approximately 150 cases have been documented since they were identified nearly two decades ago.

Then we were told: your tumor is back. To say I was not expecting that is a gross understatement. His tumor was only partially resected and the cyst had ballooned again. Being as he was again symptomatic and it had grown, surgery for another resection was recommended. Needless to say, only six weeks later, this was something we had to seriously think about. PGNTs rarely reoccur, even with partial resections, but research (the little that is out there) has shown there is a more aggressive atypical type that can behave like a high-grade glioma. Given that his tumor seemed to fall in the latter category, we decided to seek a second opinion at a brain tumor and cancer center.

We decided on the University of Miami and met a fantastic neuro-oncologist. He agreed that surgery is recommended. He showed us a lineup of all of his MRIs and showed how it is behaving and laid out the plan for another resection. While all brain surgery has its risks, his surgery is high risk for a few reasons: Its located in the motor function center of the brain. The cystic portion of the tumor is protruding into the ventricle, creating a sort of one-way valve that is allowing the fluid to leak from the ventricle, causing it to balloon and continue to grow. He also had a complicated first surgery.

On September 27th, Robert will be undergoing a craniotomy with brain mapping at the Unversity of Miami. This is a specialized MRI that allows the surgeon to more accurately identify the location of the tumor, where to resect and where to stop the leaking. We are praying that this is curative. There is a possibility that chemotherapy and/or radiation will be needed following surgery, depending upon the outcome and pathology. As of his MRI last week, his cyst has grown larger again.

Robert is my best friend, husband and soulmate. He is a loving and devoted father of two. He also serves his community as a mental health Registered Nurse and works in the intensive care unit at a local mental health hospital. He is also currently in a master's program to become a Psychiatric Mental Health Nurse Practitioner with the goal to help the rural and underprivileged population in our community. Unfortunately, he has had to put a hold on his program while undergoing treatment. He was out of work for three months recovering from the first surgery and is once again facing another recovery after this upcoming one. He has also missed work intermittently due to flare ups of his symptoms and medical appointments. I was out of work for one month and will expect to be out for atleast a few weeks again.

Funds raised will first go towards this upcoming surgery as well as travel and lodging for myself. UM is two hours away from our home. I have my own chronic health issues and traveling to and from the hospital to be close to Robert (we are expecting an approximately five day stay) will be a hardship. He will need to travel for follow up visits. If chemotherapy or radiation is needed, he may also have to travel for that treatment. Funds will also help pay for the mounting bills (medical and necessities) from his first surgery and loss in wages for both Robert and myself.

Robert has been incredibly positive with a great outlook since starting this journey. However, that can only help so much and assistance in any form is greatly appreciated. Once again, thank you so much for reading our story. If anything, please share to spread awareness about this type of rare brain tumor.

Sincerely,

Jessica Alicea and the Alicea Family