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Patient Story |
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Olivia Pacciano KY United States Female Living with Leukemia - non-specific for 11 years, 6 months Age: 14 Olivia Pacciano was 3 years and 4 months old when her leukemia was diagnosed. After a couple of weeks of complaining of pain in her legs, a sore throat and not wanting to eat, we took her to the doctor thinking that she may have growing pains and mononucleosis. Her initial blood tests came back with very low hemoglobin, very high white cells and low platelets. After a couple more weeks of routine blood tests, acute lymphocytic leukemia was confirmed through a bone marrow aspiration. She has been taking chemotherapy every day for the past two years, and is currently in remission and very proud that her blond curls are coming back fast! It hasn't always been an easy battle... When she had her first bone marrow aspiration we were asked to leave the room (and after one witnesses a bone marrow aspiration I understand why). We even had to leave the area of the hospital where she was. My husband, my sister-in-law and I walked down a long hall and sat at a table. I couldn't bear the thought of what they were doing to her and I broke down and cried and cried. I couldn't stop crying. When she was sleeping I would cut her curls off and put them in an envelope for safekeeping. After three days, I suddenly had a revelation. We had to make this a happy illness as best we could. If these were Olivia's last years on earth, I didn't want to spend them crying. After the initial shock of the diagnosis, we were in for a long road. Everyday for the first year of treatment, we had to go to the clinic for up to three shots of chemotherapy (sometimes two shots and an IV of chemotherapy), plus weekly bone marrow aspirations (until remission is met, then once per month for the first year), as well as spinal taps and daily blood counts. To this day she has the scars on her spine marking the spinal taps. Olivia immediately told the nurses that she wanted her blood tests out of her arm and not out of her finger, because her finger stayed sore and it was difficult to color! What a trooper she has always been! To complicate matters of just dealing with a diagnosis and treatment, Olivia kept spiking temperatures of 104-106 for the first 10 months of treatment. It scared us that her temperature would be normal one minute and 104 the next. We spent about 14 days each month in the hospital for the first 10 months with bladder infections. That doesn't even include the daily trips to the clinic for chemo! She had to stay in the hospital until the fever was gone (on it's own) without any Tylenol. Then, after the fever was gone, she came home with IVs and we woke every eight hours in the middle of the night to hook her back up to an 'at home' IV for antibiotics. During our first year of treatment (which all of my thoughts go by year of treatment), we met two other little girls who were fighting leukemia. They used to have nail-painting parties with Olivia at 3:00 in the morning while in the hospital. During the day I would bring in sugar, slice and bake cookies and all the trimmings with icing, colored sugar and colorful sprinkles for cookie decorating contests. These two girls have since passed away. Both girls were 12 years old. This second year of treatment we have been fighting a continuous battle with pneumonia and bronchitis. Just when you think everything is okay and the numbers look great again, you're back to the hospital with fever and some unknown illness that has to be treated with IV antibiotics for 72 hours. This second year of treatment we have spent about three days of each month in the hospital, along with weekly trips to the clinic for chemotherapy, almost daily trips to the hospital for blood counts, monthly spinal taps and a bone marrow aspiration every six months. This second year of treatment has been long and hard, and this was supposed to be the 'easy' year. When Olivia got home from the hospital after the initial diagnosis, I immediately contacted the Kentucky Chapter of The Leukemia & Lymphoma Society. Olivia joined in many of the organization's fundraisers, and the most fun for her has been the Volvo Leukemia Cup Regatta. Where else can you spend two glorious days in the sun at a park watching up to 75 sailboats in the middle of the Ohio River? On Friday night at the Kick-Off to the regatta, Olivia, my husband and I go to Waterfront Park and meet the sailors who are sailing in her honor. After meeting the sailors and listening to music and dancing for a little while, we then board sailboats with Christmas tree lights decorating the outer aspect of the sails for an evening boat ride with a spectacular view of downtown. Usually, Olivia gets to help 'drive' the sailboat under the bridges and into the dock. Olivia says that 'the Leukemia & Lymphoma Society is so much fun that you just gotta Regatta! And if you are really cute and fun you can drive the sailboat in circles!" This is such a peaceful way to end a hectic day (and a hectic time in our lives) and enjoy the companionship of those helping fight this deadly disease. Thanks to everyone who supports the work of The Leukemia & Lymphoma Society! |
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