Support Robert Nelson's Fight Against Glioblastoma

Update: Here is where we're at this morning, folks..I got an order in the works for People's Home Healthcare to see if they can get to us any faster than the week long waiting time for Gulf Coast Home Care. He was getting IV fluids from home health in Pensacola...We had only brought him home from my aunt's because they assured us they could still do it at our address, but it all fell apart once we got him home.

I'm Amber Nicole. This is my dad, Robert Nelson:

Many of you know my family from our shop, Tech Planet, & my mother from her work as a teacher at Walton High School. You also likely know my father from his support & participation in community events such as the farmer's market, food truck friday, & various festivals put on by Main Street DeFuniak Springs. I am starting this Gofundme today because my family needs help. It is hard to ask for help. It isn't in our nature, especially my dad's. He hates the idea of taking resources away from someone else who needs the help more, & him & mom raised my brother & I to be of service to this community & prioritize helping others above ourselves. But right now, we need help.

Earlier this year, my father began exhibiting some symptoms that I thought were related to exhaustion & stress from our work in the IT business. I set a doctor's appointment with his GP. He seemed like he was in a fog. Unfortunately, the decline accelerated before I could get him to that appointment to do an assessment. On March 18, I went down to his house to take him to the appointment, & he dropped a glass in front of me. I panicked. I went outside & dialed 911, fearing he was having a stroke. EMS came & rushed him to the stroke center in Crestview, while my family followed behind. By the time we got there, they had wheeled an ipad into the room where an out of state neurologist was explaining to my father that they found a mass on his brain & that he required emergency neurosurgery. They whisked him away to Pensacola Sacred Heart & put him in the ICU. The 9+ hour brain surgery successfully removed the tumor. But then we got the bad news that it was glioblastoma. Glioblastoma does not have good outcomes. It is not the sort of cancer that goes into remission. There is no cure, only "life extension therapies." The cancer just keeps coming back, & most people with this diagnosis do not make it past 14 months. We made the decision to shut down the shop so that I could focus on assisting with dad's care. We sold the building to wipe out some liabilities we had from covid era SBA loans, & then my mother & I turned our focus towards trying to make my father as comfortable as possible.

After intensive physical therapy, my father managed to regain enough strength to walk again. But this is a cruel disease. Sacred Heart Pensacola was affected by a ransomware attack which caused delays in his treatment. By the time they were ready to start radiation & chemotherapy, he crashed & required hospitalization again. Being in the hospital in the midst of the ransomware attack was hell on earth. We were surrounded by chaos. There were care deficits. Scans that used to take hours instead took days. His medical records were inaccessible due to the attack, so treatment plans could not be crafted & we couldn't even get the full pathology that we needed in order to explore medical trials. That visit concluded with a second emergency brain surgery to remove fluid build up from his brain that occurred as a complication of delayed care.

We finally managed to get free of that place, & embarked on our chemotherapy & radiation journey, which involved 33 sessions of radiation therapy. We completed those last week. I thought we were on the brink of a reprieve. Many glioblastoma patients experience a brief window of stability after radiation & chemo. We do not return to Pensacola until the beginning of September for the follow up MRI, because they have to wait for swelling from the radiation to recede so they can tell how much of the cancer has returned.

My family has been on a run of bad luck lately. Dad began declining again & started refusing food. He lost the ability to walk. He became severely dehydrated, but we have had issues getting home healthcare to service our address because of how rural we are. We had to pay someone out of pocket who didn't accept insurance to come put emergency fluids in him to keep him out of the hospital, because it's taking many days to work through the home healthcare paperwork + insurance labyrinth to find a provider who will service us.

Right now the 3 of us are subsisting on my mother's teacher salary. I've done all the paperwork for dad's disability, but we filed it back in April & still have not heard back. My parents have some savings. But because of dad's precipitous decline, my mother is debating taking emergency medical family leave for 12 weeks, & that is unpaid. The current situation is not sustainable. I do not need a lot of money to live, but I do have to keep my head above water on my mortgage & my own health insurance & medication to manage my own chronic medical condition. The bathroom at my parents' house has to be redone to make it accessible & safe for dad, which is going to be a multi thousand dollar project. There are expenses related to medical supplies & gas going to Pensacola to the doctor. There is medical equipment we could *really* benefit from, like something to help us lift dad. As you all know, my dad is a giant. His height presents some challenges for two small women trying to care for him. This sort of equipment costs hundreds of dollars though, & we have been trying to pace ourselves to make what savings we have last & continue to keep up with household bills.

My mother deserves the help. She has not left his side since all of this began. She spent all of his hospital stays sleeping in a chair beside him. As you can imagine, this whole thing has taken a serious physical & emotional toll on our entire family, but this is especially true for my mother, who has dedicated herself fully to making sure my dad is well cared for, often at the expense of her own health & sanity. We want her to be able to return to work at some point, because we do not want to lose the health insurance coverage. We would be in a much worse position without that school district insurance.

We are not giving up on dad. There is a wearable device called Optune that we will be starting in about a week. It uses electrical fields to slow tumor growth & buy us more time. Nobody knows the future, sometimes people with glioblastoma can live for a few years. I am still hopeful that we can pull him out of this decline.

If you have any spare change & can afford to help, my family would be grateful. Thank you.