Seminole On a recent Tuesday, Oliver Kugler was laughing and joking with his terminally ill stepdaughter Elise Hall.
And thats a good day, Kugler said.
He and his wife, Alison Hall, are lucky to sometimes have a conversation an hour a day with Elise, who is suffering from a rare type of medical condition called rhabdoid tumor, which forms in the kidneys, other organs and soft tissues.
Over the past 15 months Elise, 17, has seen numerous doctors and specialists. She has endured six surgeries and nearly 400 intense chemo treatments and two rounds of radiation. She has taken numerous drugs to ease her pain and has participated in clinical trials in Boston.
Elise was hospitalized again about four weeks ago. Though oral medications could somewhat control the pain, they also have debilitating effects.
It gets to a point the only way to manage her pain is literally by knocking her out, Kugler said. And what kind of life is that?
Ten months into Elises treatment, doctors informed Alison that chemotherapy wasnt working. They said more surgery was then the answer. Elise had what they called a very aggressive surgery to remove the tumor, Alison said, in an email.
So after two more surgeries, brachytherapy radiation and 14 nights in the hospital, the outcome was the same. Elise still had cancer, but now it had spread throughout her entire body. Her internal organs, lungs, her bones, her blood; Elise even has tumors popping through her skin, Alison said. I came to the hard realization that my daughter has been through hell for nothing.
Listening to NPR recently, Kugler learned that through legislation approved by Gov. Rick Scott in March, marijuana would be available to terminal patients. But the law is layered with red tape.
I have tried every avenue to get it legally and because she has to be with a physician for at least a minimum of three months, I cant even get it for her today, even though its available, Kugler said.
No real answer
Elise had everything going for her.
Her mother and Kugler were married in April 2015. The family lives in a townhouse in unincorporated Seminole.
Alison owns a hair salon in Belleair Bluffs; Kugler is director of sales and marketing at Provident Treasure Island at Sunset Vistas, which manages and operates condo hotels.
The family loves boating. Elise accompanied her mother and Kugler on about half of their trips, enjoying wake boarding and other activities on the water.
She excelled at schoolwork, and she carried about a 4.0 average as a junior at Osceola High for the 2015-2016 school year, Kugler said.
That in itself was pretty amazing considering the fact the actual number of days in the school was probably one quarter of the total number of days that you are supposed to have in school, Kugler said.
Elise took advantage of an opportunity through a special program to maintain her seat in school and take classes at home.
She would go to school when she felt well. She would take her elected classes, drama and art, which happened to be her passions, and when she didnt feel well, which was most of the time, she had her laptop with her and she was able to attend her American history honor classes, trigonometry, Kugler said.
Both Kugler and Alison have spent countless hours away from work tending to Elises care. Kugler is grateful to All Childrens Hospital, the doctors who have provided care for Elise, social workers and all the support the family has received from friends during Elises ordeal.
Nevertheless, staying positive hasnt been easy, said Alison, who has stopped working at her hair salon. Paying the salon bills has been difficult for her, but shes trying to keep her business open.
Elise is my number one concern and even when Im scared and worried I have to put on a poker face. I have to be strong and reassure her that shes going to be OK, shes going to be safe and how the horrible treatments she was having are going to save her life, she said.
The hardest thing Alison ever had to do was tell her daughter thats shes safe, although Alison had no real answer.
Elise would look me in the eye and say, Thank you mummy. Ill never forget that look of complete trust. And now I feel like a complete liar, Alison said.
So there is all these obstacles
Kugler is flabbergasted that he hasnt been able to obtain medical marijuana for Elise through the health care system. He doesnt mince words about the problems hes encountered.
I just dont understand why they are making it so incredibly difficult to get this particular type of drug that could ease her pain and possibly fight the cancer and help maintain her appetite and her weight and help her nausea, he said.
After he read recently that medical marijuana would soon be available in Florida, Kugler did some research and learned about what he contends are problems with the recently adopted state legislation.
Doctors must pass a $995 eight-hour continuing-education course before they can prescribe the drug. Two doctors have to provide opinions saying that a terminally ill patient has less than a year to live before they can obtain regular strength medical marijuana. The state has a registry of doctors who can prescribe the drug.
The first doctor Kugler called apologized and said he isnt taking new patients. The second doctor he called said he was not on the list.
A third doctor confirmed that the physician was taking new patients but explained that under the law, the patient has to be under her care for three months before the physician can prescribe marijuana.
I said my daughter doesnt have three months, I think. So there is all these obstacles, Kugler said. It was driving us nuts.
In his research, Kugler learned that renowned practicing neurosurgeon and CNN correspondent Dr. Sanjay Gupta apologized in an interview in 2013 for being against medical marijuana.
Kugler noted that Gupta said in his broadcast that every 19 minutes in the United States somebody dies of an accidental overdose of oxycodone or morphine and other types of drugs that Elise has been taking to manage her pain.
And then he says in the same breath in all my research I cant find not one person who has ever died of an accidental overdose of marijuana, Kugler said.
Kuglers dumbfounded that opponents of a proposed constitutional amendment legalizing medical marijuana for individuals with debilitating diseases would pump millions of dollars into efforts to defeat the Nov. 8 ballot measure.
Drug Free Florida is supporting Vote No on 2, which contends that the amendment allows so-called caregivers to administer pot without medical training.
You wont find a licensed pharmacist at your medical marijuana treatment center. Instead, a pot user called a budtender will help you pick out your favorite buds. This isnt medicine. Its just street pot, the website says.
Kugler said he isnt sure why a doctor would have to take a course in how to prescribe medical marijuana.
Do they have to take a course to prescribe any of the other multitudes of pharmaceutical drugs she is on right now? No. They basically write a script for a specific quantity and specific strength for a specific length of time, Kugler said.
Alison said she was opposed to the use of medical marijuana until Elise got sick.
I thought, like many others, the drug would be misused and made more available for abuse. But lets face it, she said. The people that use marijuana recreationally will always be able to get their hands on it. Its just the people like Elise that would need it for medical reasons that cant obtain it.
Which begs the question: Has the family tried to get marijuana by other means?
I plead the Fifth, Kugler said.
And now, Alison is watching her daughter cry in pain while dangerous drugs with horrible side effects are being pumped into her body day and night.
I want to tell you and the readers, Kugler said, that when you have a sick child you want to look at every single day, and they are hurting really bad they dont know why this is happening to them as a parent or as a stepparent I just want to fix it. And if you cant fix it, you just want to make them feel better. You will do anything within your means that is realistic and doesnt hurt anybody else, to make them feel better, as fast as possible. You will exhaust every opportunity that you have available to you.
News Moderator: Katelyn Baker
Full Article: Obstacles Keep Medical Marijuana From 17-Year-Old In Need
Author: Tom Germond
Contact: (727) 397-5563
Photo Credit: Darren Calabrese
Website: TBN Weekly
