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Jordan's Story

In 2013, our daughter Jordan was born. A baby girl after twin boys and we were thrilled! But at 4 months old Jordan was diagnosed with Infant Acute Lymphoblastic Leukemia, a rare and aggressive Cancer.  Jordan began treatment immediately and endured harsh chemotherapy for 2 full years. She finished treatment and 3 short weeks later her Leukemia was back. Her treatment continued and included more intense chemotherapy with total body irradiation. At 2 years old, she had a bone marrow transplant with donated bone marrow from her 5 year old brother Jacob.  Within 6 months of her transplant Jordan relapsed again. Her Leukemia had returned a third time. At 3 years old, after more chemotherapy, Jordan travelled to Philadelphia for a trial immunotherapy treatment called CAR-T cell therapy (chimeric antigen receptor). We are hoping that this treatment is the cure we so desperately need.

During treatment Jordan had many side effects from chemotherapy and radiation. She was very weak and nauseous, barely ate or drank and often had a nasal gastric tube  placed because of weight loss. She was irritable, lost her hair and was always so sad. Her treatment left her blood counts so low that she was vulnerable to bacterial infections and viruses. She became septic on 2 separate occasions and even spent 5 days in the Intensive Care Unit with a bacterial infection and high fevers.

Jordan's blood counts would drop as a result of her chemotherapy and radiation. Her blood counts would drop if she got a fever and every time her Leukemia came back. She often needed red blood cells and platelets to keep her alive so she could continue treatment. Her transfusions during her ICU stay were daily. After transplant Jordan spent 24 days of extreme isolation and received multiple transfusions to keep her alive until Jacob's marrow engrafted and Jordan's body recovered enough to start producing red blood cells and platelets again. Jordan received immunoglobulin full of antibodies to help her immune system when she was exposed to chicken pox. And as a result of her CAR-T treatment, Jordan’s body no longer produces B cells and may not the rest of her life. She is dependent on monthly immunoglobulin transfusions to provide needed antibodies to help fight diseases, viruses and infections. She can never be vaccinated again.

Jordan is just 3 years old and has fought Cancer her whole life. In her 3 short years she has received 62 life saving blood and blood product transfusions.  All of these transfusions were gifts from strangers who gave of themselves with no expectation. We often think of the number of people that have no idea that they saved our little girl's life over the past 3+ years. They have no idea that it was a little baby who needed blood to live and keep fighting against Cancer. Our family is forever grateful for the kindness and generosity of strangers. We will always encourage and support blood donation.