By Carina Livoti
On April 20, Huntington parents Risa and Domenick Pastore received news no parent wants: their 14-year-old daughter, Marissa, had been diagnosed with Acute Lymphoblastic Leukemia.
Marissa was transferred to Cohen’s Children’s Hospital that same day, only to find that her body was unable to tolerate chemotherapy.
Marissa has Down syndrome, which family friend and registered nurse MaryAnn Schramm explained is linked to both leukemia and more serious treatment-related side effects.
The drug cocktail doctor’s proposed would not only have done damage to her already weak heart—she had open heart surgery as an infant—but also needed to be administered through her spine. The plan was to dose her for 14 days consecutively, checking in to reassess after eight treatments. Even with treatment, doctors said her chances of survival were slim to none.
However, she tolerated the drugs so poorly both physically and emotionally, that after one round of chemotherapy on April 23, the hospital released her that Saturday with hospice and weeks to live.
“If you could have seen her on Saturday—she was just lying there. To think that she would be sitting up and smiling in the next couple of days was just [unimaginable],” Risa said.
Now Risa, who is a nurse at Huntington Hospital, says that her daughter will not let anyone even wearing medical clothing near her. On Tuesday night, Marissa wrote a note to her father saying that she hated the doctors and nurses who hurt her.
“She’s highly anxious and withdrawn [around medical personnel]. She does not want anyone with any type of medical [appearance] near her. She has only said one word since she’s been home, and that was when she yelled ‘NO’ as loud as she could to the hospice nurse who tried to draw her blood,” Risa said.
Since taking her home, the Pastore family has done everything in their power to make Marissa’s final days as comfortable and happy as possible. They’ve seen an outpouring of community support for their efforts.
Risa’s coworkers at Huntington Hospital set up a GoFundMe page for the family so that they could stop working and spend every possible second with Marissa. It raised nearly $30,000 within one day, and has since climbed to over $55,000.
Friends, family, and community members have dropped food and gifts daily; the family has something of an open-door policy, welcoming anyone who loves Marissa.
Last Sunday, Make A Wish came with a crew of characters and food and threw a surprise, Disney themed party for Marissa and her friends a family, complete with live performances from Frozen, Marissa’s favorite movie.
Members of the Huntington Manor Fire Department, where Risa and Domenick both volunteer, and the FDNY, where Domenick works, also came out to support the Pastores on Sunday.
In the days prior to the surprise party, Marissa video chatted with the Cimorelli’s, her favorite youtube band. Horseability also brought a horse to the Pastore home so that Marissa could ride him in her backyard.
The Special Olympics, hosted at Walt Whitman High School, awarded Marissa honorary medals since her illness prevented her from running on Sunday.
Amid all of the love and support, however, the Pastores find themselves tangled in legal issues as a result of Marissa’s disability.
Since Marissa has Down syndrome, her parents and doctors are not technically permitted to make the final call when it comes to her treatment. Despite the fact that her parents have cared for her for the past 14 years, the Office for Persons with Developmental Disabilities has the final say about whether she is allowed to refuse treatment, Risa explained.
“OPWDD has to give their blessing for her to have the paperwork in place,” she said.
The OPWDD was supposed to render a decision within 48 hours last Friday, but as of Wednesday the family had not heard anything. Until the office gives the word, the Pastores are held responsible for anything that happens to Marissa as a result of refusing treatment.
“Doctors and hospice are on board; they believe that this is the appropriate course of action. Of course I want my special needs child protected, but this doesn’t seem like it’s protecting her. You’re limiting the amount of time we can focus on just her. We don’t want her scared and unhappy and in pain” Risa said.
While they wait for a decision, Risa said the family is trying to focus on making Marissa’s final days the best they can be.