A crummy week only seemed to get worse as the sixth month came to an end.
As you know, on Sunday we got hr word the leukemia had returned. As the week progressed, Robbie had a variety of issues with blood pressure and oxygen. It was clear he was going to need plenty of help so once the nasal tubes were strapped over his ears, they remained there for the rest of the week.
The issue with the breathing seems to be connected to the fungal infection in his left lung. On Wednesday, the nadir day of the week, Robbie started the day with the bone marrow biopsy. We later learned that it was the same leukemia, M5A, so they knew what how to treat him. As the day progressed, though, Robbie remained NPO (no food or water) waiting for a scheduled time for his lung aspiration to finally get a piece of the fungus. The schedule was packed in the radiation room and they wanted to make it for Thursday. Dr. Massaro refused to accept that and pushed. During all this back and forth, Robbie got really worn and tired and thirsty. Finally, when a resident came to get his consent for the Thursday procedure, he refused. He knew his doctors wanted it done today and he wasn’t signing until the schedule was final. Dr. Beardsley herself walked down to radiation (a scan was required to see where to stick the needle) to make certain he got on Wednesday’s schedule. His nurse, Laura, went with him for the procedure and Dr. Beardsley came out, happy with the samples they managed to retrieve.
Robbie declared Thursday to be an intrusion-free day. The doctors and nurses on 7-West rallied to keep members of other departments away from his door unless absolutely necessary. As a result, he rested a lot, as he deserved.
Meantime, the parents were informed that the fungus removed was not a good kind, not at all. It meant changing his chemo protocol, which had begun the night before. They now needed to keep the leukemia at bay while allowing his few good white cells to work with the antifungal medication to help him. The specimen was growing in the lab and by Monday we’d know more.
Friday he had another MRI as they continued to measure and locate the fungus. Everythign looked fine, in fact, the antifungal may have actually shrunk some of the fungus since the previous scan.
We’re now in some very serious, very scary territory. The fungus is insidious and takes time to beat, even in healthy people. The goal is to beat the fungus then treat the leukemia, mixing and matching medications that will do the least harm to his various organs. The search for a bone marrow donor continues and while we’re told there are some promising candidates, Dr. Massaro noted there weren’t as many as she would have liked. A vague but concerning comment – just another in a long line of things this week that indicates the kid cannot catch a break.
We were repeatedly assured that this is not the end. While serious, they’ve seen it before. They know how to treat this and have successfully done so in the past. One doctor told us that this transplant doctor, his adult infectious disease doctor and Dr. Beardsley are three of the smartest doctors in the hospital. He’s in great hands medically and in very loving, caring hands from the nursing side. We’re taking comfort tin this as we enter some new, dark and for us, uncharted territory.
People continue to rally and support us. In addition to the bone marrow drive at Shore Leave this weekend, there will be serious auctioning going on for leukemia research. At the Pocket Books panel last night editor Marco Palmieri not only pushed the drive but at the end of his presentation, flashed an image wishing Robbie the best of luck with his treatment. Again, we remain humbled by the support.