Larry’s Story

Site created on August 1, 2019

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Journal entry by Larry Juceam

 Leukemia

One man’s journey

This journey began in Nov of 2018 I was sick with what was diagnosed as pneumonia I remained sick for the rest of 2018. In January of 2019 I went back to the doctor and was told I still had pneumonia. I did not feel good through March. About 2 weeks into March I was having trouble staying awake. I was missing work or just driving my route and sleeping. Around March 17th I went back to the doctor because I did not feel good my doctor did blood work on March 18th I stayed home from work, I received a call from the doctor saying she got my blood work back and I needed to pick up a report from her and get to the emergency room immediately. When I went to the clinic to pick up the report Melissa waited in the car. Amber the doctor on the reservation advised me that I had Leukemia I did not tell Melissa any of this. We drove to the emergency room and the ER doctor asked why we were there and stated we needed an oncologist. The ER doctor instead of calling a doctor or treating me for the severe mouth sores I had he sent us home. On March 19th I received a call from an oncologist telling me to get back to the hospital in Boise ASAP. We drove back to the hospital and I was admitted immediately and given chemotherapy and told I had Leukemia. I was diagnosed with AML Acute Myeloid Leukemia with a FLT 3 mutation the worst of the worst.

On March 19th I was so sick, between the chemo and the pneumonia I was put on 40 liters of oxygen and was told I was the sickest person on the floor. They were going to intubate me and put me in the ICU. After a 2nd opinion it was decided to leave me in my room where I recovered quickly from this setback. During this stay I lost several days as I have no memory of these days that I speak of all the information I am providing has been given to me by my nurse for the first 3 days of my hospital stay. After 192 hours of chemo I was given a bone marrow biopsy, this test showed that the Leukemia was still present in my blood, so another round of chemo was ordered. To date I have had over 300 hours of chemo. The search began for a donor and we started with my family. My son was the best match for me, and my transplant was scheduled for May 29th and my son was the donor.

 

AUGUST 2nd,2019

While I was on the 2nd round of chemo I required blood and platelet transfusions. While these transfusions kept me alive the transfusion caused me to start rejecting my donor, who was my son. this actually occurred in April sometime but i was not made aware of the situation until 7 days before transplant. Since this time i have lost another 5 donors because of medical issue's on their part. When you are waiting for a transplant your life the way you knew gets rocked and rocked hard. My son was to be deployed out of the country and his his orders changed to be my donor, to be told he no longer was my donor. I think the hardest part of waiting is having your life put on hold for no reason, what i mean by that is you wait weeks to get close to the date to be told you lost your donor it hurts mentally.

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