7 days

This has been a long week. Jake had tapered off the prednisone for his graft vs host awhile ago, but shortly thereafter, he became short of breath. He was starting to work out a little and blamed it on being out of shape. Hmmm… I let it go, but it remained tucked in the back of my mind. As Easter weekend approached, I knew the shortness of breath was something more. Jake felt good and looked good. He went to a party Friday night after work. He was up way too late and had been in a hot tub. The next morning he slept and went to work later that day. He commented that he felt worse but not bad enough to skip work. My mind was spinning by then. I knew he needed to see his doctor, but I also knew Jake wasn’t going to willingly miss school. “I have 2 big tests this week.” Do you want to go to the emergency room this weekend? “God no!” We both knew what going to the ER would mean. It would definitely mean an admission. I deep down knew that going to see his doctor on Monday would mean the same thing. For Jake there wasn’t going to be a trip to EZ care with a z-pak and Medrol dose pack. Not anymore. Easter Sunday I was at my Dad’s to use his oven. Dave called. Jake had gotten up and felt like he should go to the ER. After evaluating the situation, we decided they could wait and have dinner with the cousins, then drive to Indy. “The ER doc thinks he has a touch of pneumonia. They are admitting him. They have to find a bed.” I panicked. I assumed he’d be back on the bone marrow transplant unit. Thank goodness he was. As expected, they started him on broad spectrum antibiotics. Unfortunately they turned him over to infectious disease. This wasn’t our first rodeo with them. It was a team of bright eyed junior docs. I knew the routine. I didn’t worry too much about what they said until they mentioned lung biopsy. Wait a minute. I am sure he has graft vs host. He needs prednisone. Can’t they tell that without a biopsy? My heart sank. “We can do the bronchioscope, and it’s possible they can do a needle biopsy at the same time. We feel it’s viral or bacterial.” It’s not, but I know you have to follow protocol… We continued to wait. Meanwhile Jake was receiving nothing to ease his shortness of breath.  “We really don’t see any differences in his lungs from his last x ray. The tests so far have come back negative.” Of course they have. I don’t understand where pulmonary has been. Why haven’t they been here? I know this isn’t your fault, but we’ve done this before. Infectious disease walked away 3 times when Jake had the bacterial infection. Pulmonary left sooner. It took the neurologist just caring enough to figure it out. My kid doesnt have an infection. He has been sick his whole life. He needs prednisone. If you need to do the scope, then why aren’t we doing it? Why hasn’t someone at least given him a breathing treatment? It wasn’t this guy’s fault, but all I could see was more time slipping away. Jake was within 2 weeks of finishing Calculus 2 and Physics 2, and my heart was breaking for him. Dave came over. I needed a break. Deep down, I was starting to worry that the cancer was back. His BMT doctor came in and expressed hope that it was viral or bacterial pneumonia. Graft vs host could cause permanent damage. But they started moving forward with tests.  A sonogram and CT scan were perfomed and the scope was scheduled for the next morning at 8 am. At home I was lonely and still worried. I went back the next night. The scope went well. I was much nicer to the infectious disease team the next time they came in. I went back to the first grade. I know you don’t care, but I’m going to tell you anyway. You might never see another case like Jake, but what if you did… In the meantime, pulmonary and respiratory had also been in. A professor and friend from Jake’s university offered to help him finish his semester. Everything from the scope came back negative. There was no evidence of damage from graft vs host. It had been caught early. He was finally given 60 mg of prednisone. His little cheeks are already swollen, but he doesn’t feel short of breath. As always, he’s handled this with grace. He plans to go to class tomorrow.  It’s Sunday, and he’s going home. A familiar face from last year stopped by. He was a fellow, but now works here full time. He wanted to say Happy 1st Birthday to Jake. April 27th was when he received Molly’s cells. He and I agreed that it was remarkable that this had been his only stay in the hospital. I stopped writing at that point because the nurse came in to go over discharge. We are now home. Jake is already showing the side effects of the prednisone. He’s anxious to talk to his professors.  He’s upbeat and hopeful. Thank God it was only a minor setback…

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