Help for Paul from brain surgery
Donation protected
Hi everyone! Paul and Beth have had an extremely hard year and they need some help from family and friends. We would like to help raise money to assist them with bills and to get their kitchen back in working order. Here is the story of Paul’s procedures written by his lovely wife.
Paul was first diagnosed with an Ependymoma of the fourth ventricle and hydrocephalus in Oct, 2012 after two years of living with symptoms that had progressively become more and more debilitating. It was definitely not the diagnosis we were expecting. Luckily, DFW is home to some of the best neurosurgeons in the country. After discussing several options with Paul's surgical team, we agreed on a semi-conservative approach to maximize the chance of both reducing his symptoms and the size of the tumor whilst maintaining quality of life.
“On October, 30th 2012 Paul underwent 9 hours of brain surgery followed by a 5 day stay in ICU, and a second 5 hour surgery to place a ventriculoperitoneal shunt to reduce pressure on his brain and to stop any recurrence of his hydrocephalus which could cause a major stroke. By the time we left the hospital he was walking and was already feeling better than before the surgery. In February, 2013 after giving his brain some time to heal, Paul had an intensive 8 week course of a newer type of radiation treatment in the hope to slow the growth of the tumor in the future. A follow up MRI 3 months later was positive, the surgeon suggested that we would see regrowth of the tumor at some point but that it would be after 40+ years. After 3 months we made sure to enjoy the good days, after 6 months we celebrated that he had more good days than bad, and after 18 months bad days were rare. We slowly put our life back together, feeling overwhelmingly grateful that Paul was still with us, and hoped it was all in the past.
Unfortunately, this was not to be. I started to notice some of his symptoms returning at around the 7 year mark. Only subtle to start with and I hoped it was just a bad patch as his annual MRIs didn't show any noticeable change to the remaining tumor. CoVID happened and we put off the MRI in 2020. An MRI in 2021 confirmed tumor regrowth of 3cm. We were advised by our first medical team to consult with a new neurosurgeon who specialized in the part of the brain Paul's tumor was growing in. We made the decision to leave it alone for 12 months and to see what the next MRI showed. The results were not what we hoped for. The tumor had more than doubled in size so we decided waiting was just going to make us anxious. In our pre-surgical consultations we made it clear that quality of life was most important to us and that we only wanted what was safe removed. Although the tumor had grown significantly, it was still only a WHO grade I and II mix tumor which is the slowest growing grade given and isn't classified as cancer in layman's terms.
On April, 5th Paul underwent another 9 hour surgery, but as he began to come around he smiled at me. I knew he was still Paul. As time went on he didn't recover like the first time. He couldn't speak, and he wasn't able to control his hands but I kept being told he was fine and that I couldn't compare this with the last surgery. Finally the surgeon came to visit him in the Neuro-ICU and told us that he'd got about 99% of the tumor. I tried to be excited but something kept telling me something was wrong. It became clear over the first 24 hours that my concerns were not even close to how bad it would be. During the surgery they had ”accidently” let all of his cerebrospinal fluid drain which left him in agony. In 1‐2 word sentences Paul asked me if they were still operating on him and that he hurt so bad. They refused to give him anything stronger for the pain. It takes a lot to break Paul and make him cry. My only solace was that, as with the first surgery, he wouldn't really remember those bad first days. However, he remembers every minute of that pain to this day. We found out only recently that a CT scan showed they he had had a significant bleed the day after surgery, but we weren't told. As the days went on I pleaded to see a doctor but each time we were somehow missed out of their daily rounds. One nurse had to literally stalk a doctor for 2 hours to make sure she visited us. She listened to our concerns but she said she didn't know anything about Paul's case. By day 5 Paul still couldn't drink, eat, stand or even sit without help, he was almost completely deaf and his vision doubled and his eyes flickered up and down constantly. He was only allowed Tylenol-3 and hydrocodone even though he was still in so much pain, and we still didn't see a doctor except for one who spoke to Paul like he was stupid. Paul was moved to an inpatient rehab for two weeks where he made good progress. When he was discharged he could finally use his hands although he couldn't judge distance well and had a tremor. His speech was still almost intelligible but he could swallow most food without choking. He was wheelchair bound and I had to take family medical leave for 3 months to be his carer. His insurance was no longer valid so we set up the front room as a PT room. I read speech therapy textbooks to learn how to help him speak again.
I'm now back at work and with his new insurance via the federal government he is finally back in full-time PT. We have applied for benefits but Disability may take 2 years. As for the future, we try not to dwell on it too much and take it day by day. My mother is paying our mortgage for now and we just hope that 2024 will be a better year for our family.”
Prior to his second diagnosis, Paul and Beth had started a remodel on their kitchen. The kitchen was fully demoed. The general contractor and the cabinet company ran off with their money and never completed their work nor delivered any services. We called and emailed constantly to no avail. Due to Paul’s condition and loss of income, they haven’t been able to get an attorney and have been living with a bare minimum kitchen to say the least. We would like to be able to get their kitchen back in order. We are in the works of possibly having the kitchen cabinets and countertops donated. It hasn’t been finalized but we are hopeful it comes through. However, they also will need flooring, trim, plumbing work and etc. We will continue the efforts to get anything donated in regards to building material or labor that that we can but there maybe a few things we have to pay for to get this completed. We are hopeful that the majority of the money will be able to give them some relief from bills while they have a functioning kitchen again. Paul has a long road ahead of him and is unable to do any of it himself now.
Paul was first diagnosed with an Ependymoma of the fourth ventricle and hydrocephalus in Oct, 2012 after two years of living with symptoms that had progressively become more and more debilitating. It was definitely not the diagnosis we were expecting. Luckily, DFW is home to some of the best neurosurgeons in the country. After discussing several options with Paul's surgical team, we agreed on a semi-conservative approach to maximize the chance of both reducing his symptoms and the size of the tumor whilst maintaining quality of life.
“On October, 30th 2012 Paul underwent 9 hours of brain surgery followed by a 5 day stay in ICU, and a second 5 hour surgery to place a ventriculoperitoneal shunt to reduce pressure on his brain and to stop any recurrence of his hydrocephalus which could cause a major stroke. By the time we left the hospital he was walking and was already feeling better than before the surgery. In February, 2013 after giving his brain some time to heal, Paul had an intensive 8 week course of a newer type of radiation treatment in the hope to slow the growth of the tumor in the future. A follow up MRI 3 months later was positive, the surgeon suggested that we would see regrowth of the tumor at some point but that it would be after 40+ years. After 3 months we made sure to enjoy the good days, after 6 months we celebrated that he had more good days than bad, and after 18 months bad days were rare. We slowly put our life back together, feeling overwhelmingly grateful that Paul was still with us, and hoped it was all in the past.
Unfortunately, this was not to be. I started to notice some of his symptoms returning at around the 7 year mark. Only subtle to start with and I hoped it was just a bad patch as his annual MRIs didn't show any noticeable change to the remaining tumor. CoVID happened and we put off the MRI in 2020. An MRI in 2021 confirmed tumor regrowth of 3cm. We were advised by our first medical team to consult with a new neurosurgeon who specialized in the part of the brain Paul's tumor was growing in. We made the decision to leave it alone for 12 months and to see what the next MRI showed. The results were not what we hoped for. The tumor had more than doubled in size so we decided waiting was just going to make us anxious. In our pre-surgical consultations we made it clear that quality of life was most important to us and that we only wanted what was safe removed. Although the tumor had grown significantly, it was still only a WHO grade I and II mix tumor which is the slowest growing grade given and isn't classified as cancer in layman's terms.
On April, 5th Paul underwent another 9 hour surgery, but as he began to come around he smiled at me. I knew he was still Paul. As time went on he didn't recover like the first time. He couldn't speak, and he wasn't able to control his hands but I kept being told he was fine and that I couldn't compare this with the last surgery. Finally the surgeon came to visit him in the Neuro-ICU and told us that he'd got about 99% of the tumor. I tried to be excited but something kept telling me something was wrong. It became clear over the first 24 hours that my concerns were not even close to how bad it would be. During the surgery they had ”accidently” let all of his cerebrospinal fluid drain which left him in agony. In 1‐2 word sentences Paul asked me if they were still operating on him and that he hurt so bad. They refused to give him anything stronger for the pain. It takes a lot to break Paul and make him cry. My only solace was that, as with the first surgery, he wouldn't really remember those bad first days. However, he remembers every minute of that pain to this day. We found out only recently that a CT scan showed they he had had a significant bleed the day after surgery, but we weren't told. As the days went on I pleaded to see a doctor but each time we were somehow missed out of their daily rounds. One nurse had to literally stalk a doctor for 2 hours to make sure she visited us. She listened to our concerns but she said she didn't know anything about Paul's case. By day 5 Paul still couldn't drink, eat, stand or even sit without help, he was almost completely deaf and his vision doubled and his eyes flickered up and down constantly. He was only allowed Tylenol-3 and hydrocodone even though he was still in so much pain, and we still didn't see a doctor except for one who spoke to Paul like he was stupid. Paul was moved to an inpatient rehab for two weeks where he made good progress. When he was discharged he could finally use his hands although he couldn't judge distance well and had a tremor. His speech was still almost intelligible but he could swallow most food without choking. He was wheelchair bound and I had to take family medical leave for 3 months to be his carer. His insurance was no longer valid so we set up the front room as a PT room. I read speech therapy textbooks to learn how to help him speak again.
I'm now back at work and with his new insurance via the federal government he is finally back in full-time PT. We have applied for benefits but Disability may take 2 years. As for the future, we try not to dwell on it too much and take it day by day. My mother is paying our mortgage for now and we just hope that 2024 will be a better year for our family.”
Prior to his second diagnosis, Paul and Beth had started a remodel on their kitchen. The kitchen was fully demoed. The general contractor and the cabinet company ran off with their money and never completed their work nor delivered any services. We called and emailed constantly to no avail. Due to Paul’s condition and loss of income, they haven’t been able to get an attorney and have been living with a bare minimum kitchen to say the least. We would like to be able to get their kitchen back in order. We are in the works of possibly having the kitchen cabinets and countertops donated. It hasn’t been finalized but we are hopeful it comes through. However, they also will need flooring, trim, plumbing work and etc. We will continue the efforts to get anything donated in regards to building material or labor that that we can but there maybe a few things we have to pay for to get this completed. We are hopeful that the majority of the money will be able to give them some relief from bills while they have a functioning kitchen again. Paul has a long road ahead of him and is unable to do any of it himself now.
Co-organizers (3)
Niki Rudisill
Organizer
Celina, TX
Beth Frank
Beneficiary
Molly Minar
Co-organizer