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Apr 15, 2018 Latest post:
Apr 22, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Last summer, my dad, Mike, began to get sick while he and mom were on vacation in Arizona. Further tests confirmed his diagnosis of myelodysplastic syndrome (MDS), which is known as a blood cancer and pre-leukemia. Basically, his bone marrow is not making the red blood cells he needs. The unfortunate news was also that for him there would be no cure because he is not a good candidate for a bone marrow transplant. After a second opinion at Mayo Clinic, they proceeded with a chemotherapy he did every month called Vidaza, which worked well for a few months, even putting his body in remission from the disease just this past November. In February, dad got fevers in the middle of his chemotherapy week and had to be put in the hospital. This is where the beginning of our frustrations began because we were once again told they cannot find a source of bacteria anywhere in his body after multiple labs and cultures were done. We first had this issue last August when he was in the hospital for 3 weeks, as a result of what turned out to be lung inflammation found on a bronchoscopy called organizing pneumonia and steroids made his better at that time. So, in February, Dad got out of the hospital for approx 2 weeks and once again developed high fevers on March 18th, but this time his body seemed to be in pain everywhere and he was having much confusion and difficulty speaking. This time it was much scarier because he had to go to the critical care unit and be sedated and intubated for tests they needed him to be still for (MRI and spinal tap). Thankfully, he recovered well from that experience and when he was able to talk again, naturally, he started singing! We all got a good laugh watching and listening to him that night, which we needed. He was very grateful to see us all but does not remember any of it, which is good. But, once again, they could not tell us why he had that episode because nothing was showing in his labs or tests. We questioned if this was all related to his disease but the doctors did not think so at the time. Needless to say, we were tired of not having any answers for the fevers and he was tired of going to the hospital. They continued to feed his body full of antibiotics for unknown/unfound bacteria and assume he had sepsis (still struggling with how that can be legally documented if no bacteria is found). Dad was able to get home for a few days feeling pretty good. What we do know is that his intestine/colon was stripped of all bacteria, good and bad, as a result of the heavy antibiotic use and created more problems on Easter Sunday. Mom had to let the doctor know he had a fever, AGAIN, which means back to the hospital. In the medical world, it is always assumed that anyone with a high fever has a bacterial infection somewhere and they first worry about sepsis. Understandable for most, but our frustration with this approach is that dad had already been down this road so many times we were hoping for someone to recognize that maybe there is another reason for this happening. Once again, initial labs and cultures negative with exception to C-diff and colitis caused by prolonged and unnecessary antibiotics in the weeks prior. Oncology decided to do a bone marrow biopsy 3 days later, which then confirmed his MDS has transitioned to AML (acute myeloid leukemia). Not the news we wanted but unfortunately, we do not get to choose. We suspect this probably started back in February. Going forward, we are going to try a different chemotherapy (Dacogen) to slow down progression and hope for this to be effective for as long as God is willing to keep dad with us. As our family continues on this journey, we pray for peace and comfort for dad and also for mom. I will provide updates on this site as they develop. For now, we ask for everyone's love and support and visits with them are appreciated when dad is feeling well.
"So do not fear, for I am with you; do not be dismayed for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10