Carina's Bone Marrow Transplant

I would like to start by thanking everyone who participated in raising money for Carina's previous treatment. Without your generosity, kindness, and support, we never would have gotten the diagnosis that we now have, and Carina would still be stuck in a cycle of endless illness.Where are we now?The short of it is that this precious baby girl needs a bone marrow transplant and will need constant care for at least a year post-surgery. Whether you are new to Carina's journey or have been with her throughout, thank you for visiting this page. Below is a a recap of her journey with an outline of a new plan to help Carina live a happy, healthy future.Carina's StoryCarina, baby sister to Ava and daughter of Noel and Tiago, was welcomed to the world on May 15, 2016, as a healthy baby girl. As months passed and November rolled around, Carina started to experience very high fevers that lasted for two weeks at a time. Eventually this led to a terrifying febrile seizure and the start of many long hospital stays for both mom and baby. As scary as all of this was, it was just the beginning of this little superhero’s journeyIt has been a long year and a half filled with multiple hospital stays, trips to Boston Children’s Hospital for expert opinions, countless weekly blood draws,  painful biopsies, draining transfusions, specific monitoring of NK cells, and endless tears. Thankfully, at this point Carina's doctors feel confident that her symptoms are most consistent with Hemophagocytic Lymphohistiocytosis (HLH).  As they are not diagnostic for HLH, they mimic it enough to call it that. It's likely some version of this condition.  HLH is a condition in which the body makes too many activated immune cells (macrophages and lymphocytes). People with HLH usually develop symptoms within the first months or years of life. Symptoms include prolonged fevers, enlarged spleen/and or liver, skin rash, breathing problems, kidney abnormalities, easy bruising, high ferritin levels, anemia, low levels of NK cells or the inability for the body to create NK cells, and very high IL-2 numbers. While this is scary, it is good to finally have some answers and a plan to move forward. Noel, Carina's mom has coordinated with the doctors here in New York and in Boston. The most recent consensus is that she should move forward with a bone marrow transplant. They have been lucky to find a 10/10 match donor, which is extremely promising. This process will likely begin in the coming month. Carina will be hospitalized for a number of weeks, receive chemotherapy, and finally, the transplant. Patients receiving transplants can become very sick while in the hospital and there are other potential complications. Although this process will be daunting for Carina and her family, with her health remaining mostly poor with little improvement, it's the best option.  The emotional costs aside, this is also going to be an extremely costly hospitalization and a severe financial hardship on the family. Carina is scheduled to be in the hospital for 9 weeks after the transplant.  She will be unable to return to daycare for the entire year. She will need continuous IV therapy as an outpatient. As a result, Noel will be at her side nursing her and will not be able to return to work for the following year once transplant is complete.More information about HLH can be obtained at : https://www.cincinnatichildrens.org/service/h/hlh/aboutAside from this page, a fundraiser will be held on Friday, April 20th at 7pm at J.C. Fogarty's Bar and Restaurant in Bronxville, NY for Carina. Tickets are $75 and will include food, beer, wine, and entertainment. Tickets will be available for purchase for a 50/50, a silent auction, and prize baskets! Tickets for the fundraiser can be purchased for the with cash or check or at: https://bit.ly/babycarinafundraiserFor donating goods or services or for more information please contact Liz at: [email redacted]