Adams Final Wishes and Expenses

*The MRI scan shows the tumor that was found on June 17th on the left and on the right is the tumor as of July 9th*

As many of you already know, Adam was diagnosed with grade 4 Glioblastoma in August of 2022. He went into the emergency department in 2022 for persistent painful headaches and no one imagined he would be given a terminal diagnosis like he was. He immediately went in for surgery to remove the softball-sized tumor and that surgery coupled with months of radiation and chemotherapy gave him almost 2 years of basically symptom-free living. He went on to have scans every 3 months to monitor things and hopefully catch inevitable tumor regrowth quickly. He had a scan on March 1st, 2024, and there was still an empty tumor bed and things were good.

3 months later on June 17th, 2024, he had another routine scan. This time the results were not what we were hoping for. His tumor had grown back and within 3 months it grew to almost 3 inches. Austin was advised by the oncologist to head to the ER to speed up the process of another surgery. During that visit, we learned that not only was Adam's tumor back, it was spreading. It originally started in his left frontal lobe and that’s where it had come back. But this time it had crossed the cerebrum (center line of the brain) and was growing into his right frontal lobe. Because of this growth, it got a new name, Butterfly Glioma. It’s a rare and very aggressive subgroup of an already aggressive brain tumor.

The surgeon that did Adam's original surgery came in to discuss options for this round. He said he would be willing to do the surgery only if it was done in conjunction with radiation and chemotherapy. He thought he might be able to buy him an additional couple of months to add on to the 2-4 month prognosis he was given. He did make it clear that he didn’t recommend it and that doing the surgery would result in unknown deficits that could be minimal or life-altering. The surgeon recommended taking some time to think about it and taking time to get things in order and do some things Adam wanted to do first.

This time turned into a couple of weeks because of scheduling conflicts with the surgeon and him being out of the office or in surgery. We had our palliative care team and hospice come to the house and visit with Adam and discuss his options. Adam has said he wanted to do the surgery since day 1 and so we were ready to accept the facts and prepared to support him in any way possible no matter what he chose.

Things remained relatively “normal” up until Monday, July 8th. Adam had experienced some weakness, tremors, and headaches previous to Monday but other than that, he was good. On the 8th, Adam came into the kitchen to make some food for himself, while he was squatting down to look in the fridge he fell. Austin came in and helped him up, he had some more tremors and was unable to stand straight. Austin finished cooking for Adam and we started realizing that he was confused and his short-term memory was lasting anywhere from 30 seconds to 2 minutes. He made direct eye contact with me and didn’t recognize me. He was unstable on his feet, stumbling and doing things that were just random and made no sense. Austin took him into the ER that night where they waited about 18 hours to get admitted and into a room in the hospital. He started experiencing nausea, vomiting, and even more confusion and agitation.

Once an MRI was finally done the neurosurgeon was able to view the images and discuss the options with Adam and Austin. In about 3 weeks his tumor has doubled in size, it is completely in the right frontal lobe and has now involved the cerebral spinal fluid. Their words to Austin were “this is the end of the road, there is no fighting this anymore”. This has obviously been devastating for all of us and it’s so hard to watch Austin go through all of this. They are keeping Adam in the hospital until we have a plan in place and can make sure things are prepared here for him. He will be discharged once we have an appointment with hospice and we are done preparing.

I made this gofundme to reach out and ask for any help you’re able to offer. We will be using this for anything that Adam wants to do or experience during the time he has left, any expense that his insurance won’t cover and then whatever is left will be put towards his cremation and a celebration of life to honor him. This is an incredibly difficult time for everyone involved and whether you are able to donate or not, please send all the good thoughts and prayers our way.

For those of you who want to donate but would prefer to use another platform, I’m attaching my Venmo and PayPal.

Venmo - @nicolecosta0324

Paypal - paypal.me/nicole0costa