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Amy's Leukemia Journey

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On June 13, 2018, my beautiful daughter was diagnosed with B cell Acute Lymphoblastic Leukemia ph positive. This is a very rare and aggressive type of leukemia. Amy underwent a barrage of chemo treatments. She was in the hospital for almost a month. She had gone into remission. Soon after, I lost my Mama on August 20, 2018. I also lost my job when my Mama passed away. My daughter had been going to MUSC to receive treatment until a donor could be found for a stem cell transplant. My daughter's car was stolen and she never got it back. 
Fast forward to January 12, 2018. My daughter was admitted once again. She looked as though she had been beaten half to death. The leukemia had returned with a vengeance. Her bone marrow biopsy showed 98% cancer cells. Amy's doctor told her it was wall to wall and if she had not gotten to the hospital she would have died within 24-48 hours. I was scared to death I was going to lose my babygirl, my best friend, my hero so soon after losing my Mama. Amy was in the hospital from January 12-February 12, 2019. Since then, Amy went into the hospital from February 25-March 1st for high dose chemo but first they had to do what they call a blood patch because she was leaking spinal fluid from the IT lumbar puncture where she had her methotrexate (chemo) put in her spine. Besides doctor appointments and the lumbar puncture each week, my daughter has to go three times a week to have blood work to check her blood counts. On Thursday, March 7th, Amy was admitted to the hospital again. Her platelet count was back down to 5,000. Platelets are what causes the blood to clot and they should be 150,000-400,000. Her neutrophils were 0 and should be at least 1.5. Her ANC was 0. During these hospital stays she has had many, many platelet and blood transfusions along with so many IV antibiotics. Currently Amy is on 5 antibiotics along with everything else which has caused her to get thrush, which is blisters in her mouth and throat making it almost impossible to eat anything but soft foods (broth, mashed potatoes, pudding, yogurt). Amy also got c diff from all the antibiotics. They don't know how long she will be in the hospital this time. My daughter is so very sick and weak. 
Anyone who has gone through leukemia knows this is very costly. The copays at the doctor appointments, the copays for the medicines, renting a car, renting a place to stay, gas, food, the list goes on. Her Gleevek alone is $23,672.79 a month. Amy will be on this medicine the rest of her life. She has insurance but there's still that copay. Where we are staying right now, we are 5 minutes from her doctor and about 3 minutes from the hospital in case she were to start bleeding. Right now her numbers are so low she could bleed to death. My heart is breaking because I can't love these things away, I can't hug them away, and I can't kiss them away. Watching my babygirl go through this makes my anxiety so bad it's hard to breathe sometimes. I can't begin to imagine what my daughter is going through, my mind won't allow me to. 
After everything here is finished, we will have to go to where the stem cell transplant will be done. Then we start all over again. We've been told that is usually a 4 month stay. We are the ones that has always helped others. Now we are in need of help. If you find it in your heart to help us it would be greatly appreciated and we would be so blessed. We also stand in great need of prayer. We are humble people and one day we will pay your kindness forward. Thank you for your time and reading Amy's story. May God bless each of you ALWAYS!!!

Organizer

Diane Jones
Organizer
Bryson City, NC

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