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Carina's Bone Marrow Transplant

$10,080 of $25,000 goal

Raised by 122 people in 12 months
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: babycarinafundraiser@gmail.com
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Carina Update: Carina was readmitted into the hospital tonight. She has been coughing, sneezing and dealing with a runny nose since Friday and so yesterday at clinic they did a multiplex and swabbed her nose. The results came back positive for RSV (Respiratory syncytial virus). This virus in an immune suppressed person can lead to pneumonia and all other serious diseases if left untreated. Today she was breathing heavy and they decided that she would need to be admitted for a further work up including a CT scan of the chest...Hopefully this will be a short stay
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UPDATE:
Carinas skin biopsy results came back today showing 100% graft vs host disease (GVHD). This means that she has had GFVD previously and now based on her worsening rash and preforming another skin biopsy she now shows positive results for GVHD again. Since Carina is about 230 days post transplant this is considered chronic/late onset GVHD. Her course of treatment stays the same with an additional day added of ECP therapy (now 3X week) and the addition of two new medications, Rituxan and Etanercept. Since chronic GVHD means that not only do we fight against the overall inflammation of the T cells we now need to fight against the inflammation of the B cells. Carina will need to remain inpatient for the first cycle (about a month) of this treatment due to the seriousness of the medication, how she handles it and the possible side effects...please continue to keep this superhero in your prayers...unfortunately we will be inpatient for Christmas, a time we so needed to be out of the hospital and spend with family ♥️
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Carina was readmitted 2 nights ago because the rash she had all over her body has been getting progressively worse...two days ago she woke up and her face was so swollen, her eye lids and checks.... they think she may be retaining some fluids..... when she was on cellcept a medication for graft vs host it helped with the skin part of GVHD but she was still experiencing diarrhea...they took her off of cellcept due to possible toxicity and put her on a medication called sirrolimis....this helped with the stool but now is causing a relapse with the skin...a biopsy will need to be done hopefully today and then they will send the skin samples out to Seattle Children's Hospitals GVHD lab to be evaluated. The skin rash is causing her lots of "burning" pain. Also, her LDH levels are high....when she was receiving neupogen infusions daily this would happen so once we cut down on them her LDH level dropped back down...she has not had neupogen infusions in 2 weeks and now the LDH levels are high again....say some prayers for us...hopefully this will not be a long stay
Also, please take the time to check out this amazing video of Maria Fareri Children’s Hospital that Carina has the experience of being part of. This hospital has been a huge part of her life for the last two years.
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Carina was readmitted back into the hospital two night nights ago because the rash on her body is getting progressively worse...two mornings ago she woke up and her face was so swollen, her eye lids and checks.... they think she may be retaining some fluids..... when she was on cellcept a medication for graft vs host it helped with the skin part of GVHD but she was still experiencing diarrhea ...the doctors decided to take her off of cellcept due to possible toxicity and put her on a medication called sirrolimis....this helped with the stool but now is causing a relapse with the skin...a biopsy will need to be done hopefully today and then they will send it out to Seattle Children's Hospitals GVHD lab to be evaluated. The skin rash is causing her lots of "burning" pain. Also, her LDH levels are high....when she was receiving neupogen infusions daily this would happen so once we cut down on them her LDH level dropped back down...she has not had neupogen infusions in 2 weeks and now the LDH levels are high again....say some prayers for us...hopefully this will not be a long stay
Also, check out this amazing video that Carina was part of. Maria Fareri Children’s Hospital has been amazing to us over the past 2 years
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$10,080 of $25,000 goal

Raised by 122 people in 12 months
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CH
$20
Chrisy Hernandez
28 days ago
AF
$50
Amber & Ashley Fields
1 month ago
KL
$225
Keith Lasko
1 month ago
GB
$200
Gina Boyer
1 month ago
MH
$20
Michelle Hernandez
1 month ago
AH
$20
Amanda Hazzard
1 month ago
JD
$30
Jesse DeFilippis
1 month ago
LV
$20
Lauren Valentine
2 months ago
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