CCS grad’s blood disorder stymies doctors

CCS grad’s blood disorder stymies doctors as family perseveres

(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.”

Doctors remain unable to determine the root of Vincenza’s disease and why the transfusions aren’t working.

“It’s very frustrating; they don’t understand why the hemoglobin breaks down in her system and doesn’t carry the oxygen that she needs to live,” said mom Ln, praising the staff at Bassett Healthcare’s Oncology Clinic. “Many people are involved in her daily care and are kind and compassionate and are rarely recognized for their commitment to care,” Ln said.  “That helps us get through the day.”

Vincenza’s story began in January of 2020.

“Vincenza is a special education teacher,” Ln told The Freeman’s Journal / Hometown Oneonta. “She got hit in the face with an iPad at school one day and had head trauma issues and couldn’t breathe; overall she just didn’t feel well. They finally did some blood work and found she had very low hemoglobin counts. If this accident hadn’t happened, we wouldn’t have realized she had a blood disorder until much later.”

They took her to Strong Memorial Hospital in Rochester where she spent a month undergoing tests that found nothing.  Her spleen was removed in May 2021 in the hopes that would help, but it did not. The family turned to other options, including a bone marrow transplant.

Vincenza’s brother was the first bone marrow donor and he will be the second donor as well. “Fortunately, we had a family member who was a close match.  Of all of the people that need a bone marrow transplant, 30% find a match within their family.  The other 70% have to rely on unrelated people getting tested and hopefully matching,” Ln said.

“We have a lot of hope.  The outpouring of love from the community has been overwhelming. We pray that Vincenza will re-gain her strength so we can start healing,” Ln said. “We are very lucky Vincenza’s brother was a close match; we hope the Bone Marrow Drive will bring people out so they are registered for another person down the road.”

How to help

“Be the Match” bone marrow drive; simple cheek swab

Cooperstown Central School auditorium

Tuesday, March 29, 2022 3pm – 5:30pm

Must be between 18 and 40 years old

Text VincenzaCCS2012 to 61474 to register or to receive a test kit in the mail.

One thought on “CCS grad’s blood disorder stymies doctors

  1. Cathie Willoughby

    I am so sorry to hear about how sick you have been!. I’m glad your brother can donate stem cells for you. I have cancer and have experienced the need for transfusions and how bad you feel when you need them. Have never experienced one tenth of what you are going through. I’m praying that God will give wisdom to your doc and that God will heal your body from all that is keeping you from being well.
    I have a small gift for you.
    Would it b OK for me to drop it off at the oncology dept.?
    I will b there on March 31.
    I am a patient of Dr. Allerton.
    My name is Cathie Willoughby.
    You are stronger than you know Vincenza. 💜💜

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