Headaches come first. “Terrible” migraines that will last all day.
Osmond Nicholas, then 26 years old, worked as a police officer in his hometown of Oceanside, California, after earning a Bachelor’s degree in criminal justice and a Master’s degree in homeland security at San Diego State University.
Headaches and fainting continue. Soon he slept up to 16 hours a day.
In July, after doctors told him that he might be exhausted from a change in his grave in the police, he received a diagnosis that would change his life.
Nicholas was diagnosed with stage 4 glioblastoma multiforme, a rare disease that experts say is one of the deadliest types of brain cancer. Aggressive cancer affects about 13,000 in the United States each year and is incurable. Senators John McCain and Ted Kennedy were both diagnosed and eventually died of the disease.
Before accepting a diagnosis of brain cancer, Nicholas said he thought his migraine and chronic fatigue were caused by “his work schedule or diet.” He changed his diet to see if it would make a difference, but migraines continued.
“Finally, I said, you know, maybe I was behind in my sleep. I went to the doctor, and he sort of gave me a diagnosis of chronic fatigue syndrome,” he said. But Nicholas did not understand the diagnosis because he felt like he had slept a lot.
In June, Nicholas planned to go to Las Vegas for his bachelor party with some friends. He had applied to his fiancée Trinity Daniel in June 2016, and the two planned to get married in September 2017. At his parents’ house the night before his trip, he had a very painful headache. “It was the worst headache I had ever experienced, which caused nausea and I woke up to vomit,” he recalled.
His mother, a nurse practitioner, insisted they go to the hospital immediately.
Within an hour while in the emergency room at the Kaiser Permanente Zion Medical Center in San Diego, Nicholas was told that a CT scan showed he had a mass in his brain. “I don’t know what mass is, or I don’t unite two and two – mass, tumor, cancer,” he said.
“I am really excited at the moment because for half a year I feel like I’m crazy with this headache,” he continued. “Finally they found something I wasn’t crazy about, and everyone trusted me.”
After finding mass, Nicholas was told that he had to undergo emergency surgery that morning. He said the urgency of the operation did not give him time to digest any information.
“At that point, I haven’t even really put cancer into all of this,” he said. “I just thought, okay, I had a tumor, or mass. The worst part at that time was that they had a craniotomy and opened my skull.”
After the operation, he thought he was “on the biggest hill.” “I am pretty sure that they will call me, saying no news is good news … and it did not happen,” he said. He remembers telling his boss that he can return to work within a few weeks after the staples are removed from his head.
Two weeks after the operation, Nicholas made his first oncology referral appointment in July 2017. There he was told that he had brain cancer, specifically stage 4 glioblastoma, which he described as, “many words,” to him at the time.
“I might be a little naive, even after undergoing brain surgery, I have the mindset that people always have benign brain tumors all the time, or benign tumors, I always see it on the news,” he said. “To that extent. They took something from my head, I had to deal with ugly scars, and I will go back to work.”
His mother asked about his prognosis in the appointment after hearing the diagnosis. “That’s when doctors were a little reluctant, but honestly, told me the average could be anywhere from 12 to 18 months, but I was fortunate that the tumor came out,” he said.
Although glioblastoma is more common in older adults, the disease attacks patients of all ages.
“Much research is ongoing to try to understand why this tumor develops and so far, with very rare exceptions, there seems to be no connection with environmental exposure, or with any link to innate or genetic predispositions to this development. Tumors,” Dr. David Reardon, clinical director, Center for Neuro-Oncology, Medical Oncology, at Dana-Farber Cancer Institute, said, “Good Morning America.”
“For the majority of patients, this is a type of cancer that develops for reasons that we don’t understand and not because of anything they do, or are exposed or inherited,” Reardon, who has no connection with the Nicholas case said
With survival rates varying by several prognostic factors, including age, tumor stage and more, the average survival rate is estimated at 15 months for patients with glioblastoma, according to Reardon.
Michael Vogelbaum, chief of neurosurgery and chair of the program’s department of neuro-oncology at Moffitt Cancer Center, said for patients who received “very intensive and highly monitored care”, the average survival ranged from 16 to 20 months. Vogelbaum has no connection to the Nicholas case.
Nicholas said the day he received the diagnosis was “probably one of the hardest days” of his life.
“I really think, I’m young, I have cancer – that means they might be able to give me the most chemotherapy and radiation and I’ll be fine,” he said. “Then, my oncologist then explained that this was not a type of cancer; this was end-stage cancer,” he recalled. “Sometimes it will come back sooner or later.”
He remembers crying and did not want to share his diagnosis with his fiancé, who had just graduated from law school and was studying for an exam. “I just want to go home and report good news … All I see is that they give you 12 to 15 months … and they lose their way of speaking … their way of thinking,” he said of his research on illness.
Nicholas called close friends to tell them that he, “might not be here long” after hearing the news. “When you were very young, just hearing the word ‘terminal means you will die … I can’t even cover how it is,” he said.
Daniel, Nicholas’ fiance, now a wife, said at the time it was “very difficult” as a young couple and changed their perspective on life. “We really had our sad days where we would just sit around the house and cry, or one thing we used to do together was, what we are still doing now, we are going very far,” he said. “We will only talk about how we feel. Initially, it was difficult, but he is a warrior. He is someone who is committed to life.”
Move forward with care
Nicholas began his treatment with a standard of care for brain cancer patients. After surgery, he started Temozolomide, or Temodar, a form of chemotherapy, combined with radiation at the UCSD Moores Cancer Center in August 2017.
But his body “did not respond well” to chemotherapy. “During radiation, my blood works, all of which are white blood cells, platelets and red blood cells, diving, which happens because that’s what chemotherapy does,” he said.
“Usually they get you out of it for a few weeks, it reappears and then you start your treatment again, but I’m already very low,” he continued. “I remember that my platelets were in one digit, which could cause you to start bleeding and your body basically died of it.”
Nicholas had to stop chemotherapy after four weeks because of his body’s reaction. He was almost halfway through 30 radiation treatments when his doctor told him he was “very anemic” and he had a very weak immune system.
He remembers shortness of breath from time to time, and his doctor told him, “You don’t have an immune system … all your neutrophils are zero, so be careful. Don’t get out.” “The next day, Nicholas had a fever and went straight to the emergency room at the Kaiser Permanente Zion Medical Center, where medical staff put him in an isolation room in the oncology unit.
Nicholas is scheduled to get married the following month, September 9, 2017, and must remain quarantined on the hospital’s oncology floor for almost three weeks.
“Until September, I think third or fourth, they have to wait until my white blood cell neutrophil count reaches at least 500 before they can release me to the public. I remember, at that time, thinking that I would cancel my marriage because I was stuck at home sick, “he said. His neutrophil count slowly rises, and he is finally released from the hospital three days before his marriage.
He hasn’t done chemotherapy since, even though he has completed radiation treatment. The main treatment he has relied on since September 2017 is Optune, a hat which he says is worn for up to 23 hours a day.
Mayo Clinic. “data-reactid =” 94 “> Optune is a device used to treat glioblastoma which,” uses technology called ‘tumor management’ to send an electric field to the brain, which can help stop the proliferation of cancer cells, “according to him Mayo Clinic.
Although patients using Optune do not feel electrical impulses from the treatment, Reardon said the treatment requires “patients who are sufficiently motivated” because they must be used at least 18 hours a day.
“We know from laboratory studies that cancer cells, they tend to grow and divide in a very irregular and fast way compared to normal cells in our body,” explained Dr. Reardon. “When cancer cells are exposed to this oscillating electric field, it is very difficult for cells to divide and divide. Finally, if they cannot do that, cancer cells give up and die.”
When Nicholas first learned about an FDA-approved device, he remembered thinking, “If the hat will make me live longer, I will shave my hair and we will do what we have to do.”
Along with Optune, Nicholas continues to get platelet transfusions and injections of white blood cells to boost his immune system. His blood work is checked every two weeks now and he has a brain scan every six weeks. “It was really in my life the only time I really got an active reminder that I had brain cancer,” he said on the scan. “The few days between getting your MRI … and your doctor calling you back may be more stressful days on your moon.”
He said he was aware of doctors’ warnings about tumor uncertainty. “It can disappear … you don’t have anything for 10 years, and then the next 10 years, something comes up and you have a recurrence of all these cancer cells … or it can be very fast. But what they know is that now … it will return. “
Reardon said glioblastoma is different from other aggressive cancers because it does not metastasize in all other body systems. “Even though we don’t have to worry about cancer spreading to the lungs, or bones, or lymph nodes, or the liver – other organs in the body – it spreads microscopically to the outside,” he said.
“The main mass that we can see on MRI scans of patients when they come with their deficit or headache procedure, we see a mass localized on an MRI scan, stretching out of the mass is microscopic infiltrative cells that move outward into adjacent brain tissue, “he continued. “So, even though it doesn’t spread and spreads out of the brain, it spreads in the brain itself.”
Life as a father and husband with brain cancer
Choosing to have a family, said Nicholas, was one of the biggest decisions he made in prioritizing life over diagnosis. “I don’t really know if I want to marry and marry my wife [through becoming] “a widow and has a daughter and let her grow up without a father if everything goes south or how they say it should go,” he said. It was a kind of leap in my first faith that I would live my life and live without limits and not let cancer take me the day before. “
“I believe if I would say, ‘Hey, I don’t want to have a baby or anything,’ only the things my wife and I planned – we knew we both wanted – then I ‘I’ll let cancer win the fight of my life,’ he added.
Daniel said he had doubts about having a child because of his worries about her husband’s illness. “I don’t want to do this alone,” he remembers thinking. However, she said she and her husband developed stronger ties from the start through their struggle.
“After undergoing a big test at the beginning of our marriage … we kind of built the foundation that we will go through through this and stay united and whatever comes, we can find out because we have been thinking about it ever since,” he said.
The couple welcomed their daughter, Riyah, in November 2018, and Daniel said their little girl and her father were inseparable.
“He was more excited, I think, to be a father, especially when he was born,” he said. “I usually work outside the house, so he is here with him during the day. He does everything – food, diapers. I praise him because he learned to walk and talk because I was not there and he was there. Went home with him. “
“He’s his little roadie, he goes everywhere with him,” Daniel added. “They went hiking, shopping, to the homes of his friends. Wherever he went, he went and he was an extraordinary father who loved him.”
After retiring from the police in October 2019, Nicholas said he had time to serve his daughter. “I’m just trying to think like this – even if I’m gone in five years, six years, which I hope I’m not … there are children out there and little girls out there who don’t” I have many days with fathers they are – and he is still alive. So I said, hey, now I can give all my time to him. “
“I’m sure there will come a time when he will ask everything, and I think I will be frank and honest because I think that’s the best way to do it,” he added.
He said that he had difficulty putting the joy of fathering into words and encouraged anyone who considered having a child to do so, with or without illness. “If you think about it, no matter how bad … it will be fine,” he said. “Whether you are here or not – don’t let don’t let cancer determine the rest of your life before that happens.”
Nicholas is also fortunate to have parents who support him at all times, he said. “My father and mother, they have attended every promise. They have also become stones in my life as far as only opening my eyes to truly be safe.”
His two brothers, Javier Nicholas, 30, and Nadya Hall, 34, also joined him.
His sister, Javier Nicholas, said that he was “very proud” of Osmond. “He can give up and nobody can blame him for that, but he never did,” he said. “His life changed forever in one day and he always handled it like a warrior. He is my hero and inspiration for those who fight against brain cancer. As his brother, I love him and I am truly inspired by his determination and fortitude.”
Along with relying on his family’s support, Osmond Nicholas also uses music as a way out to overcome his pain. “Once I get out of the hospital and be able to play, it just keeps me away from diagnosis for a moment and takes me to a different zone saying only appreciate music and appreciate that you are here and you can still do things that you like,” he said.
He said he now shares videos playing his guitar on Instagram to bring hope to others who might also fight with glioblastoma.
“I posted more videos not because I thought I was the best guitarist, believe me, I knew I wasn’t, but because I knew there were other people with glioblastoma, or any type of cancer … that could be encouraged. Because I thought your attitude shaped a lot things about you because your mental health must be right. “
“I don’t like to post too many sad things – not that it didn’t happen – but I think it can be an inspiration that hey, if this man with a brain tumor is enjoying life, what exactly do we do to be upset?”
Increase awareness and live every day as much as possible
May is the National Brain Cancer Awareness month, and Nicholas said he believes there is a huge need for more awareness about brain cancer, specifically glioblastoma.
“I don’t think many people think about, know what glioblastoma is or really know a lot about brain cancer in general,” he said. Nicholas said living with brain cancer gave him the responsibility to share his story and hope that other people who struggle with the disease will do the same.
“I will always be an ambassador for that,” he said of his illness. “I just thought saying it would help and then be as active as you can, whether it’s to your hospital or to the senator to get money because funding is a place where big things actually happen.”
Vogelbaum said research for the treatment of glioblastoma was difficult for several reasons. “There really is no other area of developing a cancer drug where you don’t take samples of the tissue being treated to understand what treatment is doing,” he said. “It’s more difficult for us to do that in glioblastoma patients, but it’s still necessary.”
He said “sending therapy directly to the brain” was also needed. “There needs to be an understanding that there is no way to set a time limit for success in any field of medicine, especially in cancer,” he explained. Vogelbaum said that in the past few decades, melanoma was another untreated cancer that produced many “terrible and unexpected results.”
“Then came immunotherapy and targeted therapy, BRAF-targeted therapy, and that really changed the way we approach melanoma, to the point where for many patients today is a very treatable disease,” he continued. “It happened in a very short time when there were many other things that were tried and failed. Finally, the right thing was discovered. We must have the same optimistic approach to glioblastoma.”
He said researchers must continue to try new approaches to better understand the biology of cancer.
Nicholas’s diagnosis completely changed his perspective on life. “I became a little more introspective and became more peaceful with life in general,” he said. “Some people focus on, ‘Oh, I just want to live to be 100 years’ and all that. I feel like being diagnosed with glioblastoma … I just want to live to have a nice day today and live as long as I can. Just to take advantage of that. “
His illness also strengthens his understanding of the fragility of life.
“The only thing I can guarantee is that we will all die, so use what you have,” he added. “There’s a little thing that we use in the brain tumor group, we call it like, ‘the best group we never wanted to be a part of,’ and I really don’t want to be part of this group if I can’t, but since I, it changed my life. “
“I don’t think I see things more beautiful, but I think I see it more as a perspective all back to – you can die every day, so live your life for every day, every day.”
A father who lasts longer than the prognosis of brain cancer shares his life’s struggle and love initially appeared on goodmorningamerica.com“data-reactid =” 188 “>A father who lasts longer than the prognosis of brain cancer shares his life’s struggle and love initially appeared on goodmorningamerica.com
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