Celine Gjelaj’s Battle with Childhood Leukemia

On January 12th, 2022, Celine Elizabeth Gjelaj was diagnosed with B-Cell Acute Lymphoblastic Leukemia. ALL Type B (as it is colloquially referred to) is a type of blood cancer more common in young children. There are no known causes and no definitive genetic factors that play a role in the formation of lymphocytic cancer cells in the bone marrow. Prior to her diagnosis, Celine was a vibrant and energetic 3 year-old who loved to play house and dress-up with her older sister, Chloe, and hug and kiss her parents, Anton and Valentina, all day long.

Days before Christmas of 2021, both Celine and Chloe exhibited cold-like symptoms. Both were tested for Covid. Chloe’s results came back positive for Covid, but Celine’s instead came back negative. Over the next week, Celine’s cold-like symptoms and mild fever remained steady, as did a general malaise and paleness. After a visit to her pediatrician’s office, she had another Covid test and a respiratory panel performed, in which she came back positive for the enterovirus virus. The following week, Anton and Valentina noticed that Celine would often fall, stumble and trip throughout the day. She exhibited numerous bruises on her knees. Her parents assumed this was due to her playing and falling. They only became truly concerned when shortly thereafter Celine began exhibiting a pronounced limp. Valentina made the decision to get her re-evaluated again and took her back to see her pediatrician. Once they conducted a blood panel, they were able to see that her White Blood Count was elevated (her count was ~35,000, whereas a normal range is between 5,000 – 20,000) and her platelet count was depleted (~12,000, with normal range being between 150,000 – 300,000). Not only did this explain the bruising and paleness that would not go away, but it also confirmed Anton and Valentina’s newfound worst fear – their daughter had leukemia.

This sweet little 3- year old girl would go on that night to NYU Medical Center to meet with the head of childhood oncology and hematology there, Dr. Elizabeth Raetz. She was admitted right away as they conducted more confirmatory tests. On Friday, January 14 2022, Celine underwent three procedures: a spinal tap extracting fluids for testing and injection of chemotherapy into her spinal fluid, a bone marrow biopsy, and a procedure to insert a mediport device into her chest that acts as a port and central line to the heart where doctors administer treatments as well as use to sample her blood. In addition to these procedures, she received a few blood transfusions. She began treatments that day as well - treatments that will last the better part of 2.5 years.

During this time, Celine will undergo numerous spinal taps (sometimes weekly), and bone marrow samples. She will be taking a combination of steroids and chemotherapy, all of which help clear her of the cancer in her body but at the same time make it very difficult for her to be the same kid she was. She will also need more blood transfusions throughout her treatment. She will feel tired most of the time. She will be nauseated and irritable. Due to her being immunocompromised, she had to be taken out of her Pre-K3 class and she has to be strictly limited to her interactions with other kids as her condition puts her at a very high risk of infection. A simple cold can set her back in the hospital for a week or more.

Her parents have to be cautious with how they conduct their day-to-days. They have to sacrifice family functions, holidays, gatherings, vacations and weddings. Valentina even had to sacrifice her career in order to take care of her baby girl.

Big sister Chloe also has to limit her school playdates, her ballet classes, and her birthday parties. At 5 years old, trying to explain to Chloe what is happening to her little sister has been one of the most difficult things as parents that Anton and Valentina have had to do thus far.

Due to insurance reasons, Celine’s care has been transferred to Memorial Sloan Kettering under Dr. Peter Steinherz and his team. Insurance is incredibly helpful, but it only covers so much. Celine has upwards of 1-3 copayments just for a single appointment – she has to go to the hospital 3-4 times a week for the next 2.5 years. Physical therapy (which she will need plenty of) is only allowable up to 30 times a year under their plan and the rest would be out-of-pocket. Expenses pile up, and now that there is only one salary coming in as opposed to two, they seem to pile up even faster.

In addition to the standard care of treatment, Celine has been accepted into a clinical trial that has promising outlooks and expected to increase her curable rate. The trial administers a steady dosage of blinatumomab (a monoclonal antibody) into her central line port. The medicine is injected continuously 24 hours a day/7 days a week for 28 days in a row. This trial lasts for two months, with the initial 28 days followed by a rest period (in which the standard treatment of care with chemotherapy resumes) before the final 28 days are completed. While this trial has come with great recommendations from all the doctors they have spoken to, it also means that 3-year old Celine has to have a backpack containing two IV bags and tubes coming out of it attached to her chest for 60 days. She has to sleep with it, eat with it, go potty with it. She needs to return to the hospital every 4 days to refill the bags and change out the needle, a procedure that not only scares little Celine immensely, but is also painful. Lastly, because this procedure is a clinical trial, insurance may not cover the cost, which in this case is around $180,000 for the 2 rounds of the clinical trial.

We felt helpless and thought the littlest thing we can try to do, is alleviate some of their financial burden so they can focus on what is most important, baby Celine and her health. On behalf of Celine’s family, we are asking for help from you. Please donate whatever you can, no amount is too small. We are so fortunate to be a part of such a strong and caring community, thank you all so much for your love and support, it means the world to Anton, Valentina, Chloe and Celine and all of us who love them so much.

Thank you