I startled myself awake last Saturday morning around 2 AM. Seth typically wakes up between 3-5 AM and goes downstairs to eat and possibly fall back asleep on the couch. For some reason, I was concerned about him going down our stairs by himself that night. I know when his blood counts get low that he can get light headed. He's always been self aware when he feels faint, but in the middle of the night I wasn't sure if he would be paying enough attention. The last thing I wanted was my husband falling down the stairs with no platelets. 

I rolled over in bed to check on him, and I felt his back...and it was HOT. I initially wanted to check his temperature, but then I remembered that he sleeps with a heating pad on his back. However, it typically turns off automatically after two hours. I was lying awake stewing over whether he had turned the heating pad back on or not. He eventually sat up to use the bathroom, and I let him know that I was awake. When he came back to bed, he actually asked me to get the thermometer...and then I knew that something  wasn't right. His temp read 100 degrees twice, two hours apart. It is not uncommon for patients receiving blood products to have a 'febrile reaction;' which is all that I was hoping was happening. He would be at CBCI by morning, and I was confident that they would be able to determine the cause of the fever. 

Seth and his dad spent most of the day in Denver, receiving platelets and whole blood. Each time, they do vitals, which includes a temperature check. The entire time that Seth was at the hospital, he did not have a fever. Thank goodness! Or so I thought...

By the time that the boys got home around 2:30 pm on Saturday, Seth walked in the door and was shivering. It was not cold outside. I immediately checked his temp and it was 100 degrees again. He was exhausted from the day, and I figured since he had been monitored the whole time he was gone, maybe it would reduce on its own. Seth fell asleep on the couch...but I remained worried. As soon as he woke up, I checked his temp again around 4:30 pm - 104 degrees. SHIT! We know the rules, given Seth's condition: if a fever goes above 100 degrees, you're goin' back to the hospital...in Denver. Seth's doctors informed the emergency department at the hospital that they would be coming back ASAP. 

Seth was given a 'VIP' card after his stem cell transplant. We were informed that there are emergency situations that can arise which require immediate attention - and the card needs to be given to the ER at the hospital so that he bypasses the waiting room, and will be placed in an isolated area of the emergency room. The ER team was ready, and waiting for him. He had blood draws, a chest x-ray, chest CT, and was immediately started on broad spectrum antibiotics. The CT scan showed irregularities in his upper right lung, which led his medical team to request a bronchoscopy to culture exactly what was growing. The cultures would take a few days for complete results, but his medical team was confident that he had bacterial pneumonia. Boy, I wish they had been right. 

By Tuesday night, infectious disease was visiting with Seth and told us that the cultures showed that his lung infection was fungal. Something called, mucormycosis, or black fungus. Apparently, it is something that is impossible to avoid. Most healthy humans breathe it in regularly but it won't ever infect us - because we have immune systems. Something, my sweet husband didn't have for over a week. Thanks to chemotherapy...The drugs meant to cure my husband from cancer, that are meant to weaken the immune system, inadvertently gave him a potentially lethal fungal infection...WTF. Given Seth's history as well as his current condition - the only way to treat the infection, was to cut it out. Seth was going to have the top lobe of his right lung removed. STAT.

Seth was started on stronger IV antifungal medications. His medical team had to boost his ANC fast so that he would have cells necessary to help fight the infection. He also had to receive 6 bags of platelets so that they were high enough for surgery. Another little cherry on top - Seth had to get a CT of his brain and sinuses to make sure that the infection hadn't spread beyond his lung. In 3 days, we went from a 100 degree fever, to this?! Fortunately, the head CT showed no infection in his sinuses or brain. Some good news, finally. 

The surgery was yesterday afternoon, and it was a complete success. Seth has been recovering in the bone marrow transplant ICU, where he has been receiving great care. They have been able to manage his pain very well and be attentive to all of his needs.  They took his catheter out today, but he was not able to urinate on his own...So it got put back in *OUCH.* Per usual, he handled it rather graciously. A kidney ultrasound was performed - no results yet. They know he has an acute kidney injury based on the bloodwork, just not sure why. We just keep putting out fires over here. My husband is so damn tough. He even walked laps up and down the floor today with a walker (and I don't even think he needed it.)

Now back to the leukemia...

We have a very fluid transplant schedule. Everything potentially shifting due to Seth's recovery timeline. He is done with chemotherapy. His next step is a bone marrow biopsy with results guiding him directly to stem cell transplant, or Car T Cell therapy before transplant. His medical team has selected a donor, which is fantastic. As of now, his transplant is scheduled for the end of November. 

Charlotte is home right now. Seth's mom, dad, and aunt have been alternating between being home with our baby girl, and here with Seth. My parents went home a week ago, and will likely be back for the holidays. 

For now, I'm trying to take things one step at a time and just focus on tonight. Tomorrow's worries will be there tomorrow...But for now, I get to rest beside my honey.