Now in remission, the cancer-stricken teen known as Cassandra C. is fighting to get out of the Connecticut hospital where she has been held since December
She has tried to make the hospital room where she has been held for the last three months as comfortable as possible – hanging pictures of her family, friends and beloved cat, Simba, on the walls and drawing pictures of flowers on the windows.
But it’s still not home.
After being forced by the state of Connecticut to undergo chemotherapy treatments she did not want, the 17-year-old known in court papers as Cassandra C. is now in remission – fighting to get out of the hospital where she has been held since Dec. 9.
“I have been alone in the hospital for the most part,” the Windsor Locks, Connecticut, teen tells PEOPLE from the Connecticut Children’s Medical Center in Hartford, where she has been legally required to stay since late last year under the temporary custody of the state Department of Children and Families. “With something like this, you need support and you need people there and I’m kind of just in a room, not doing much. It’s hard.”
On the eve of the March 16 hearing she requested through her attorneys to ask a state court if she can leave the hospital and finish her two remaining, four-day chemotherapy cycles by commuting to the CCMC from home, Cassandra opened up at length to PEOPLE, telling her side of the story about how she ended up as a “prisoner” in the hospital. She also talked about how she misses Simba, her family and friends, her boyfriend and most of all, her mother, Jackie Fortin, whom she has not seen or spoken to since New Year’s Day after DCF prohibited the teen from having any contact with her, she says.
“This has got to be one of the most difficult times of my life,” she says. “Not being able to be home with my mom is hard enough, but not being able to see her or talk to her at all is really hard.”
“I’m hoping they will let me go home,” she says. “I just want to go home.”
She says she has every intention of finishing out her court-mandated six-month chemotherapy cycle, which is supposed to end April 27. “It’s working,” she says. “I’m in remission, she says, adding that a recent PET scan confirmed “there are no signs of active cancer. That played a big part in me accepting that I need to finish this and then go home.”
DCF Commissioner Joette Katz said in a statement that the department is “pleased with Cassandra’s progress toward a complete recovery” and that “we have had full confidence throughout that the medical professionals involved in her treatment would be successful in saving her life.”
But Cassandra says she isn’t so pleased with “how the situation was handled. All I wanted was to seek alternative treatments and see how they worked. I was never given that opportunity.”
Even though the chemotherapy she received brought her into remission, she says, “I would never get chemo again after this if I ever relapsed. I would explore alternative methods like I originally wanted to. I don’t want to go through this again.”
A Nightmare She Never Saw Coming
Last fall, when Cassandra’s doctors at CCMC suspected she might have Hodgkin’s lymphoma, she began researching chemotherapy, its standard treatment, which medical experts say has about an 85 percent chance of curing it. Without it, her doctors said she could have died.
She says she wasn t that concerned about side effects such as nausea or hair loss. She says she was most worried about other “major possible side effects” she had read about including possible heart damage and secondary cancers.
While Assistant Attorney General John Tucker said at a Jan. 8 Supreme Court hearing that “the mother took the front seat on this,” Cassandra says that’s not the case. “My mom didn t play any role in me choosing not to get chemo.”
Her mother, she says, initially wanted her to have chemotherapy. “She told me as a parent that she didn’t want to lose her only daughter and that we would get through the chemo, but that wasn t enough for me. I wanted to try anything else that wasn t as potentially harmful as chemo. Eventually she chose to not fight with me about it. She chose to stand by me.” (Fortin had no comment.)
After doctors confirmed her diagnosis, Cassandra says, CCMC scheduled appointments for Cassandra to begin chemotherapy.
Instead, Cassandra and her mother went to Baystate Medical Center in Springfield, Massachusetts, to get a second opinion, she says. When she missed several appointments at CCMC (Cassandra says her mother told the hospital she would reschedule them), doctors there notified DCF, according to court records. (The CCMC could not be reached for comment.)
Ward of the State
DCF took temporary custody of her and placed her in a foster home with a family member, she says. She returned home after she agreed at a Nov. 12 court hearing to undergo the chemotherapy. But on Nov. 18, on her second day of treatment, her oncologist told her that she needed surgery the next morning to insert a chemotherapy port in her chest, which she did not want and thought she would not have to get for another month. “I was freaking out.”
She ran away, leaving home after her mother fell asleep. “I felt like I was backed up against a wall,” she says. “I felt like I had no other options.”
On Dec. 9, after she returned home, a Superior Court judge granted DCF temporary custody of Cassandra. (Cassandra’s lawyer did not return calls for comment.) “DCF kind of just took me away, so there was really no time to make a decision on what we wanted to do or to research alternative treatments. No one ever sat down and talked to me about the chemotherapy. It was, ‘You have cancer. You have to get in here so we can start chemo.'”
‘I Felt Violated’
Life in the hospital was bleak at first for Cassandra. She wasn t allowed to have a phone. DCF limited who could come see her, banning visits from her mother after Jan. 8, though she is trying to regain her visitation rights.
Someone even stood guard outside her room for the first few weeks to make sure she didn t try to leave. “I feel like a prisoner,” she says
On Dec. 17, she says, her doctor told her that she was scheduled for surgery the following morning to insert the port she feared, so that she could get the chemotherapy she had fought so hard against. On the morning of the surgery, “a nurse came in and I told myself just to fight. When she started to put an IV in me, I wouldn t let her.”
After spending two hours telling her doctor, DCF and other hospital staff that she didn t want the surgery, “Security had to pick me up, pin me to the bed and strap me down by my wrists and ankles,” she says. “When I woke up, I looked down and there was a port in my chest. I thought, ‘I cannot believe they did this to me.’
“I felt violated. I felt like I was being treated like an animal. I thought, ‘How can you force a person, regardless of how old they are, to do something they haven t given consent to?'”
The following day, she was forced to resume the chemotherapy. And on Jan. 8, the Connecticut Supreme Court ruled that Cassandra had to continue the state-ordered treatments, saying she was not mature enough to make that decision for herself.
A New Life in the Hospital
Throughout her whole ordeal, Cassandra says, “I chose to be happy and positive. Being miserable wouldn t have helped anything. Staying positive contributed big time to my being in remission.”
She is relieved that the side effects from the chemotherapy were not as bad as she had feared, she says. “I am lucky,” she says. “I can only hope I continue to go down that road in the next two months.”
She hopes to get her job back at the mall and maybe even a second job, since she relies on money she earns to pay her phone bill and save for a car.”My life is so broken up right now,” she says. “I have to put all the pieces back together.”
Looking back on everything she has gone through, she says, “I can only hope that if there is a kid out there who doesn t want chemo, they will show my story to a judge and say, ‘Remember this girl?’ ”