May 24, 2022 Latest post:
Mar 13, 2023
On Sunday, May 22nd, 2022 I received the diagnosis that I have Acute Myeloid Leukemia (AML) at Kansas Univerity Medical Center (KUMC). I am beginning treatment and I will be here for the next 4-6 weeks at KUMC. Below I'll go through how this all started.
In April of 2022 I had a cold that led to me getting laryingitis. I lost my voice completely. I was seen at Convenient Care for a sinus infection and was given a round of steroids to help with my voice. After 2 weeks with not much improvement I was put on a stronger round of steroids. My voice was slowly starting to get better, but then I started having gum sensitivity and bleeding during normal teeth care. Eventually, my lymph nodes and jaw started to swell and the gum sensitivity increased. At this point I was quite a bit of pain so I went into urgent care. I was given an antibiotic and told to get into my my primary care provider (PCP) after for a follow up. I was seen the following day by my PCP and put on a second antibiotic and they did some blood work to get a better idea of what was happening. My complete blood count (CBC) came back very abnormal I had very low white blood cells, red blood cells, and platelets. Even more concerning was that of the white blood cells, the neutrophils (cells that fight infection) were absent completely. At this time my PCP wanted me to urgently get in to see a hematologist. With the help of a good friend I was able to get an appointment at KU Med (20th of May). At the appointment the doctor wanted to rule various other causes, such as infection, vitamin deficiencies, etc and ordered several tests. The plan was to meet the following Monday on the 23 of May to discuss the results and next steps. Later that Friday afternoon the doctor himself called and let us know my CBC had come back abnormal, but that he himself had looked at the slide and saw some cells that could indicate possible leukemia. I needed to get into the hospital that evening to start further testing and put on immonucompromised precautions.
We arrived around 7:30 pm at KUMC and the testing began. On Saturday I was given a bone marrow biopsy and the testing from this definitively showed that I have Acute Myeloid Leukemia. I will start chemotherapy this afternoon (24th of May).
Kansas University Medical Center, Cambridge Tower A, Room 10110 3825 Cambridge St. Kansas City, KS 66103
When visiting park in parking garage P5 and bring your ticket with you to be validated at the security desk (1st floor). There is a bridge that can be used during normal business hours to walk from the parking garage to the hospital. Head to the elevators and go to floor 10. General visiting hours are from 11:30 am - 8:30 pm.
Important!!!! Cara has an extremely weakened immune system and it is very important she does not get sick.
Only 2 visitors are allowed per visit and masks should be worn at all times and no one under 12 years old may visit. Please check in with Cara (785) 845-4280 prior to visiting to check on her status and if any other visitors are coming at that time (back up Kevin at (785) 383-5976). When you enter the floor you need to open the outside door with the button put any stuff down and wash your hands thoroughly. For anything you can wipe down please wipe it down, and otherwise just make sure whatever you bring in is clean (when in doubt don't bring it). After washing your hands you can open the second door (there is an interlock so both doors can not be opened at the same time). If you are feeling sick or have any symptoms do not come to the hospital to visit.
Food Restrictions: Nothing raw No unpasteurized cheese (such as feta, brie, etc.) No unpasteurized drinks No deli meat Any raw fruits or vegetables need to be thoroughly washed No salad bar/buffet sourced food Nothing acidic (red sauce base, orange juice, etc.) Nothing spicy (sad for Cara she likes spicy foods)