I am so overwhelmed by all the support, love and kindness which has been extended to my son and me since my daughter Vincenza’s passing. Words seem grossly inadequate as I reflect on all the wonderful things people have done for us. Living in a community where people genuinely care about each other and express that care through their actions is the greatest gift.
I know how challenging life can get for all of us and yet challenges are always made easier with others’ encouragement and support. I thank everyone in “my village” who reached out to us and have helped carry us through this most difficult time. I am grateful that so many people extended their hands and hearts to us. I would never have been able to care for my daughter throughout her illness and her transition without all of you.
On Tuesday, the Be the Match bone marrow donor event took place at CCS High School. Several got swabbed, but just as important, students were stopping by that weren’t quite 18 yet to register. When they turn 18, they will get information sent to them on how to become part of the registry. “I wanted to volunteer at this event because I learned about it when we had a community service project we had to do. I’m in community health care and this is very important to me,” said Ariadne Hodgson. Left to Right: Back row: Ln Alessi, (Vincenza’s mother), Jennifer Pinder and Rebecca Burk-Sciallo, event organizers and teachers. Front Row: Students Ariadne Hodgson, 12th grade and Malachi Sciallo, 11th grade, volunteers.
(Editors note: Our January 13 edition included an update on Vincenza Alessi, the 2012 CCS graduate who had a bone marrow transplant that didn’t take. This week, we bring you up to date on her condition and urge you to get tested as a bone marrow transplant participant. See ‘How to Help’ below for specifics.)
By Tara Barnwell
“We brought Vincenza home to Cooperstown from Columbia Hospital in New York City about a month ago,” said Ln Alessi, Vincenza’s mother. “Her only option left is to have a second bone marrow transplant. We brought her home to strengthen her emotional, physical and psychological health. She must get stronger in all of those categories in order to have that second transplant.”
Since coming home to Cooperstown, the Alessi family goes to Bassett Medical Centers Oncology department three to five days a week, depending on Vincenza’s hemoglobin and platelet counts. “We spend several hours at the center just for the transfusion, then another half-hour to make sure she doesn’t have a reaction.”
A normal platelet count is between 150,000 and 450,000. Vincenza’s is 2.
A normal hemoglobin count is between 12 and 15 for women. Vincenza’s is 4.5.
“These transfusions are supposed to increase blood counts so she can live; the cells carry oxygen to her system,” Ln said. “After the transfusions, Vincenza’s cells are not retaining the oxygen like they are supposed to. Anything below 5.2 on the hemoglobin count is considered dangerous. A 4.5 is extremely dangerous.”
“She is tired all of the time, she has very little energy,” she said. “She has total body pain; everything hurts all of the time because of the low oxygen levels in her system.”
Two years ago it was discovered that my daughter Vincenza was suffering from an unspecified bone marrow failure, where her own body was destroying her red blood cells. Red blood cells are responsible for carrying oxygen throughout your body. She didn’t have enough and was literally suffocating. Fast forward to now, with a lot of treatment in between, she is at N.Y. Presbyterian/Weill Cornell Medical Center recovering from a bone marrow transplant, compliments of her brother!
These two years represent ups, downs, fears, and uncertainty of huge proportion. We have all felt depleted right to our core. As the result of friends, neighbors and loved ones, we have forged ahead. Yet because of the community we call home, we were blessed with more support, compassion, love and prayers than one could expect.
It started with a large Christmas package which arrived filled with all of the things she would love. It was clear that each gift had been selected for her. The elves responsible were the individuals who have provided care to Vincenza on a daily basis at the Cancer Center for the last 23 months. They wanted her to know they missed her and were optimistic about her recovery. We cried and felt so embraced by this act.
