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Talking with a pediatric oncology nurse about COVID-19 and how it has forever changed the culture of oncology healthcare

By Grace Wensley, Biological Sciences ‘21

Author’s Note: As I saw how the COVID-19 pandemic has so greatly affected the elderly population and immunocompromised adults, I wondered why there wasn’t as much as a conversation about immunocompromised children. I interviewed a pediatric oncology nurse working at Children’s Hospital in Oakland, California, and discovered how difficult the pandemic has been on pediatric oncology patients and the healthcare culture shift that has emerged from it. 

This pandemic has taken quite a toll on the healthcare system, and this interview displayed the hardships faced among the pediatric oncology sector. Nurse Kelli Hemmingsen-Smith  discusses how various COVID-related protocols can disrupt pediatric oncology patients’ treatments. Additionally, she describes the emotional impact of the pandemic from limited visitors allowed, a scary environment due to all doctors and nurses wearing masks, and extended inpatient stays for some patients.

 

This interview has been lightly edited for clarity and brevity.

 

Health Care Practices Pre-COVID-19

Grace Wensley: When would your oncology patients wear masks prior to COVID?

Kelli Hemmingsen-Smith, RN: I’m trying to remember what life was like before we wore masks. Normally we would ask them to wear a mask any time they were neutropenic—so any time their absolute neutrophil count (ANC), the amount of white blood cells that are actually neutrophils, was under 500. Part of wearing a mask is for [going] outside because of the spores found in the dirt, on top of sick contacts. We try to be a bit more lenient so that kids can have somewhat of a normal life. But, 99 percent of kids have a central line (a catheter placed in a large vein for fast blood draws and drug administering) so what happens at our hospital is if you have a fever and you have a central line, you have to come to the hospital, get a dose of antibiotics that last for 24 hours and then wait. If you get another fever you do the same thing again. If you get to the hospital and you have a fever, and you’re neutropenic, you have to be admitted and stay until your fever resolves and your counts recover which could take weeks. So while we aren’t requiring kids to wear masks in certain situations [prior to COVID] a lot of family members will enforce mask-wearing because if your kid gets a fever, we know it’s probably a virus, but we can’t risk it so this is how we treat it. If it’s not a virus though, kids go septic really fast so they’ve kind of taken it into their own for mask-wearing.

GW: When these patients are neutropenic is that usually due to their chemotherapy? 

KH: Yes, pretty much all the time. Kids get their chemo. About 7-10 days later, they reach the nadir, which is where your white blood cell counts are at the lowest that they should be, and then they slowly start to recover after that. Also, if they’re sick, that can also cause them to be neutropenic because their immune systems are non-functioning, especially in the beginning days of leukemia, a cancer of your immune system. We can have kids who are waiting for their counts to recover before they start certain chemo, and they can be delayed because their counts aren’t recovering. Sometimes, it can just be because they have a cold. 

GW: Do patients’ counts have to recover between each dose of chemo? 

KH: Depends on the chemo. Not always. Depending on where they are in their cycles. 

GW: If their counts aren’t recovering, and they keep getting sick and can’t recover, does their treatment get delayed? 

KH: Yes. So mask-wearing is a big deal. Like I said, although we required [mask wearing] only for certain instances, kids getting sick that are in treatment is a huge deal and parents are very aware of that.

GW: In these situations of patients being required to wear masks pre-COVID, would their doctors and nurses also be wearing masks? 

KH: Pre-COVID, never. I would actually be very surprised if our culture didn’t change in the fact that we always wear a mask to be perfectly honest, because when you really think about it, it does make sense. When they are neutropenic in the hospital, they get a private room. Our unit has an entire HEPA-filtered unit, so instead of them having to stay in their rooms they can come out, and there is a playroom. Prior to COVID, the only thing that changed from a nursing standpoint if the kid was neutropenic was what room they were put in and that was it. 

 

Healthcare Practices During COVID-19

GW: Has there been a big delay in cancer treatment schedules due to how the hospital has had to adjust infrastructure with COVID? 

KH: We never limited anything. But the only way that it has really impacted our kid’s treatment is when they are getting procedures. They have to have been tested for COVID within four days of their procedure, and for a lot of our patients, it is hard to get to us twice—it is hard enough to get to us once. We do have a lot more people missing procedures, or we don’t get the results of the COVID tests back fast enough. Now, it’s a little different, because we have a rapid in-house test that takes 2-3 hours. Now, if you missed [the test] and didn’t come, we can usually make it work, but in the beginning, that wasn’t always the case. 

I think where we see the delay the most is if a kid’s family gets COVID. In that case, we hold [off on] chemo because the patient could then test positive for COVID. We automatically hold chemo, get a COVID test, and while they are doing the quarantine we are still holding chemo because we just don’t know. That is 14 days. Then if they get it, that’s another 14 days that we are on hold. These are kids that are usually at the end of their treatments [in clinic] which is what we call the maintenance phase which is where you take oral chemo every day. So a month of not taking it is a lot. How does that affect survival, relapse? We don’t know.

GW: Have there been instances where you admit a patient from the clinic to inpatient out of fear that by going home, they could potentially get COVID?

KH: Yes. We had a kid whose housing situation doesn’t allow them to fully quarantine so he just stayed inpatient until we could find a safe place for him to go. We had another patient who was going for a bone marrow transplant, and her family got COVID. We had to hold her marrow transplant until we knew that she had been away from them long enough. She stayed inpatient, and no one could come to visit. But what was really interesting, was once they did the transplant, she got COVID. So we don’t know if it was just “chilling” and when we blasted her immune system it came on. So there is a lot that we don’t know. Would it be fine for the kids to take oral chemo the whole time until their ANC dropped? Maybe. But nobody knows.

GW: Have any of your patients had COVID?

KH: Yes, and what is very interesting about the kids who have gotten it is that the younger kids have had pretty much zero symptoms, and the only reason we know that they have it is because they have to be tested prior to anesthesia. They get anesthesia a lot because they get chemo through lumbar punctures [spinal tap] which we administer anesthesia for. We automatically hold chemo when they test positive. When their symptoms resolve we restart chemo. A lot of time during that time, their ANC will drop due to the virus, and then we wait longer if their ANC did drop to restart the chemo until it was at the right numbers. They haven’t really been super symptomatic.  I’ve noticed that a couple of the kids that have been getting it have elevated liver enzymes, but that can be caused by chemo too, so it’s kind of one of those where there isn’t really a correlation. I’ve noticed it with two kids. 

GW: What is the visitor policy currently? 

KH: Inpatient is one person per patient, and that person can alternate and stay overnight with them. In the clinic, we only allow one parent at a time. Before COVID, anyone could come—we couldn’t care less. Now in the clinic, it’s no siblings and only one parent, unless it’s a consent conference or a diagnosis, then we make allowances. 

GW: Do you think the strict visitor policy will remain post-COVID?

KH: I would hope that would change because that’s a big hardship. If you have a kid that’s young, and can’t really be left alone, then the parents don’t ever get an overlap period to communicate things like, “Hey this cup is what he’s been taking his medicine in.” I would hope that would change. They can’t see their siblings and that’s a big deal for kids.

GW: How have wearing masks affected patient and provider care? 

KH: Even now, anytime an employee is in their room, they all have to put masks on. Us being in masks and gaining rapport with children who are really scared of us is really hard. It’s such a simple thing, but we give a lot of toys now. They can’t go in the playroom. There are no volunteers. When kids are awaiting COVID results prior to surgery, it sometimes takes hours to get them back and that whole time they are fasting. Kids get grumpy. While waiting for surgeries, a lot of the time one parent is outside sitting in the car all day on speaker. It’s hard. 

 

Conclusion:

The feeling I observed from the entire interview was that many of these hardships related to COVID-19 will in time go away, but mask-wearing is here to stay. It took a global pandemic to make light of it, but any type of illness can significantly affect the trajectory of a patients’ treatment and masks can help prevent this, so as Hemmingsen-Smith said, “It just makes sense.”