Adam’s Story

Site created on June 11, 2019

This is Adam's story, as told by his wife, Joan.  

Newest Update

Journal entry by Joan Gensamer

July 27, 2020 was our two year anniversary in our new house.  It’s always bittersweet because only less than a week after we moved in, Adam was diagnosed with leukemia.  We’ve been able to turn it into a beautiful home for our family.  This spring/summer, I painted all the rooms and updated some décor.  We had a lot of hand me down furniture that was mismatched, so I worked on finding inexpensive items to buy and build to make each room just feel nicer.  On Tuesday, morning, July 28th, Adam was so tired and had no energy.  He cancelled his PT appointment, which had already been a reschedule from the day before.  I felt his forehead and he felt very warm so I checked him temperature.  It was 100.9.  He always gets upset when I call about a fever because he doesn’t want ANOTHER hospital stay so I told him I’d wait an hour and check it again but if it was over 100.3, I was calling.  So, I checked him an hour later and it was down to 99.6.  Then another hour later it was down to 99.3 and he was wide awake, sitting up, as if the morning never happened! Now, he is on an IV antibiotic that does cause fevers.  But when my dad took him into his Wednesday morning appointment, I sent in a note, noting the fever the day before so that they can at least draw labs and maybe do a urine culture (since he’s so prone to UTI’s).  His PA did do cultures and a urine sample.  So far, those results are normal.  But his Infectious Disease doc was upset about the fever and made him get a COVID-19 test.  So my dad drove him through the drive thru area and he got swabbed but that came back negative.  At this point, his fever is being thought to just be a side effect of the antibiotic he is on.  His PA is extremely worried about his fluid buildup occurring so fast.  They took 4.5 liters out Monday and he was getting hard and full Wednesday.  She is working on trying to get him drained again on Friday.  They do have a pump they can give him to drain constantly versus going in all the time for it.  However, due to the infection rates of those and Adam’s immune system, they do not want to go down that route. Thursday, July 30th, Adam got a nice rest day at home where he could just relax.  On Friday, July 31st, he had his infusion appointment.  They also were able to get him in for another drain.  They got 2.3 liters out but said that was all they could do because his abdomen wall was swollen.  He did not go to PT due to the timing conflict with the drain.  He came home and fell asleep at 3PM and only woke up to eat and take him pills until the next morning at 10AM.  I was very concerned about him but he did not have a fever and once he woke up at 10, he was good the rest of the day.  It may have been due to lack of sleep the previous night.  On Sunday, August 2nd, he had a clinic appointment.  This is also the two year anniversary of the day he was diagnosed.  He did not need any blood products so our appointment was short.  We both has just been in a funk knowing we just hit two years of dealing with all his medical issues.  We never seemed to catch a break.  He’s been sick for 731 days.  Of those 731 days, he spent 303 of them in the hospital or rehab hospital.  He also has spent an additional 186 days going to outpatient appointments.  And he spent 145 days in Houston, TX.  Over the last two years, 41% of the time, he was not at home.  I am hopeful we might finally be to a point where things turn around for us. 

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