Emily Matilda Kass was a talented, funny, beautiful, athletic, kind, smart, and generous 9 year old at the time of her myelodysplastic syndromes myelodysplastic syndromes: (my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means abnormal growth or development. People with MDS have low blood cell count for at… (MDS) diagnosis. She had just celebrated her 9th birthday with friends and had received a gymnastics trophy before a routine doctor’s appointment changed her life.
Emily was diagnosed with a very rare bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be… disease, MDS. As there wasn’t any protocol protocol: An action plan that describes what will be done in a clinical trial and how it will be carried out. This plan is reviewed and approved by a committee at each place doing the clinical trial. This committee is known as the Institutional Review Board. for treating a pediatric MDS patient, numerous specialists around the country were consulted to try and come up with a plan.
For the next year and a half, Emily was in and out of the hospital with various treatments and complications, including extreme chemotherapy chemotherapy: (kee-moe-THER-uh-pee) The use of medicines that kill cells (cytotoxic agents). People with high-risk or intermediate-2 risk myelodysplastic syndrome (MDS) may be given chemotherapy to kill bone marrow cells that have an abnormal size, shape, or look. Chemotherapy hurts healthy cells along with… prior to a bone marrow transplant bone marrow transplant: A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers some patients the possibility of a cure. But for many patients, a BMT is not an option due… . Subsequently, Emily developed Bronchialitis Obliterans, a progressive lung disease. At the same time, Emily also endured a severe weakening of her bones due to all the medications she was taking.
Throughout her ordeal, Emily always stayed positive and kept her sense of humor. Emily was determined to get back to school and friends.
In January 2006, Emily was rushed to the hospital for the last time. For the next 6 weeks, she bravely battled her disease, even choosing to have a tracheotomy. Emily knew that using a machine to help her breathe would give her the energy to get back to school.
As Emily said, “I‘m going to 6th grade at Palos Verdes Intermediate School (PVIS)” and “I’ll just get one of those ‘aid’ people to push me around.” To her, now in a wheelchair, it was no big deal because she would be back at school with her friends.
Emily lost her fight on March 9, 2006. Emily is forever missed, forever loved, and forever in our hearts.