Why do we organize and play in this festival tournament?
Economic difficulties and uncertainties are all around us. Disease is not a topic for international conversation alone- they happen right here in Long Island. Some of our Long Island citizens have a severely ill child, staggering medical bills, and must juggle the pressure of full-time work, hospital visits, doctor’s appointments, and attempting to maintain a sense of normalcy. Imagine these families and how your generosity can make a difference for them.
Reese was born on May 14th, 2015. Over the first few years of her life she met every developmental milestone with ease and grew into a happy healthy little girl. She has an older brother in middle school who adores her and a younger sister starting pre- k next year who is her built in best friend. Her father is a native Long Islander and has a large family who all live here on the island. Reese has always loved animals and dreams of becoming a veterinarian. Reese is a truly gifted artist, she can sit for hours with a colored pencil or paintbrush in her hand. Some of her other favorite things to do include dancing, playing with Barbies, swimming and hiking. Prior to her diagnosis she was enjoying her first year of elementary school. She was thriving in kindergarten, learning to read and write, making friends, and maturing before our eyes.
For the first five years and eleven months of her life Reese never had an illness worse than a cold. Then, in late March 2021 Reese began complaining of head pain. Her ear and jaw were bothering her and she had headaches. After three visits to the pediatrician without answers it was time to go to Cohen Children’s Medical Hospital emergency room. The Pascarella family anticipated leaving with a prescription but instead on April 5, 2021 Reese was admitted and diagnosed with ALL (acute lymphocytic leukemia). The very next day bone marrow and spinal fluid were extracted for testing and chemotherapy began.
ALL is the most common form of childhood cancer. The prognosis is usually good and treatment has almost been perfected. It is however a lengthy process taking no less than 2.5 years from start to finish. Within days of being admitted into the hospital Reese had a mediport placed in her chest to receive medications and avoid constant puncture wounds. The initial phase of treatment, called induction, began on April 7th. The goal of induction is to put leukemia into remission. The treatment includes spinal taps, chemotherapy, and lots of other medications including steroids. During this time Reese also received countless blood transfusions. There were many undesirable side effects from her treatment. She was always hungry and never satisfied so she gained a lot of weight and was constantly using the bathroom. Her hair began to fall out. She looked almost unrecognizable. Reese also lost her ability to walk unassisted and requires help with most physical tasks. It is hard to believe she was rehearsing for her dance recital just 6 weeks ago. The first phase of treatment ended on May 5th. Reese’s bone marrow was once again tested. Induction usually puts kids into remission. Unfortunately, it was not successful with Reese. After 30 brutal days there was still leukemia in her bone marrow. Hearing the news that she failed induction was heartbreaking as it changes her prognosis and means a more difficult treatment is ahead of her.
The second phase of treatment, called consolidation, is about to begin (May 18th) and will last 60 days. Chemotherapy is going to be intense. She will feel sick like she has the flu, lose the rest of her hair, and be treated at the hospital 5 days a week. Reese’s oncologist has plans for what is to happen if the next phase of treatment is not successful. If that is the case Reese will receive CART T therapy. In order do to that healthy T cells are needed so on May 12th, just two days before her 6th birthday, Reese went through a procedure to extract T cells. It involved placing a catheter in her neck. It was supposed to be a 6 hour process but the line clotted so she was admitted and it was completed the following day. She was home just in time to celebrate her birthday with her family. The T cells have been frozen and stored and will hopefully not be needed!
Through all of this, Reese has managed to continue to smile. She follows directions given to her by her parents and her medical team. She helps nurses access her port when it is time to draw her blood, she swallows whatever medication is handed to her, and she sits in a wheelchair when it is presented. These actions sum up who she is, a kind person who whole heartedly wants to please others. She truly makes the world a better place. Losing this battle is not an option but it is not going to be easy.