On Tuesday, I got to meet two of the heme-onc floor's frequent fliers. Now in most areas of medicine, the term "frequent flier" has a starkly negative connotation. In the adult ER, it conjures images of alcoholics, drug users, and the mentally ill* and is usually accompanied with rolled eyes and a sigh. But in peds heme/onc, there are two prototypes, of which I got to meet one of each this week.
One is the "sickler", a kid with sickle cell anemia who is seen every few months with a new sickle cell crisis. These are very painful experiences that we can only do so much for. The main reasons the child is admitted to the hospital are so that we can monitor them as they receive high doses of our most powerful pain meds and to watch for any life threatening complications of the disease process.
But slowly, as these crises keep happening, these patients can become desensitized to the medications, requiring higher and higher doses and even becoming addicted. Meanwhile the team who used to be looked up to as a kind family trying to help, starts to be seen as an incompetent, rotating group of idiots who are refusing to treat their pain. At best, sicklers are quiet and patient as they suffer through their pain and our annoying bidaily questioning. At worst, they are bitter and uncooperative.† But they are all well-known to the entire hospital.
The second heme/onc frequent flier is the totally healthy cancer/transplant kid. Depending on the type of cancer, some kids need to come into the hospital to receive their treatment. Other kids had a bone marrow transplant to treat their cancer (and have practically no immune system now so as to stave off transplant rejection) and need to come in because they spiked a fever or had a positive growth on a surveillance culture. These kids are often totally 100% healthy but, because of our appropriately cautious guidelines to try to keep them that way, they sometimes get stuck in the hospital for a few days while we double check that they aren't getting sick.
We love these kids. They are adorable and energetic and just want to be outside of their boring rooms. They can often be found coloring at the nurses station or playing with toys in the hallway. Most kids in the hospital, even when they are starting to feel better, like to stay in their familiar room surrounded by family. Our hospital works very hard to make sure that a child's room is a safe space, where we won't do painful procedures, like lumbar punctures, if it can be avoided. But the frequent fliers know all the nurses and doctors and like to be roaming the halls and saying "hi" to everyone. I have never worked harder to prove that a kid didn't need to be on isolation precautions (and thus be confined to their room) than when one of these kids comes back in.
TuesdayIL: Rhodotorula mucilaginosa is a common environmental fungus that on rare occasions can grow in the blood of immunosuppressed patients.
*There is a good conversation to be had about how these medical demographic groups should not have a negative stigma associated to them. But, especially in the ER, the way our medical system is set up makes it very hard to find long-term placement and treatment for these groups, so they are usually just stabilized and sent home or back onto the street. The frustration with the system is the real negative influence here, but the patients are often treated as guilty by association.
†Note that these patients start falling into the same camp as the adult ER patients discussed above; patients who the system has failed and whom are at risk for the caregivers to misdirect their frustrations towards.