This is a Germ-Free Zone
The Struggle of Keeping an Immunocompromised Child Healthy
In the book “Everything, Everything” by Nicola Yoon (and movie of the same name), the heroine Maddy suffers from an immunodeficiency disorder making her highly susceptible to infection. Maddy yearns to be a normal teenager and explore life beyond her windows, but her mom painstakingly (obsessively) does everything in her power to keep her safe and healthy including (in the movie version) an entryway that sanitizes people. Although, spoiler alert, it all turns out to be a lie, I can understand where her mother is coming from. For the average child, an infection can primarily be managed at home. If symptoms like a fever lasts for several days or worsen, then it is advisable to take a child to see their doctor. However, a child with cancer gets a different set of rules like in the book/movie. Infection can be serious for an immunocompromised child. Besides the implications for the child, having to rush to the hospital disrupts the family. With fear of infection and the disruption it causes, it is no wonder why many parents of a child with cancer become obsessive about maintaining clean environments and keeping away from anybody sick.
With all the things I have done in my job, it may come as a surprise that I am not a huge germaphobe. Children getting sick strengthens their immune system for the future. It can be an awful experience for everyone but it is beneficial in the long run. With my eldest, I always let illness ride itself out. The only time I took her to the doctor was when she complained of ear pain or when symptoms didn’t improve as expected. When she started pre-school she was sick almost monthly for about 4 months but rarely has gotten a cold since. My husband, on the other hand, was constantly cleaned and prevented from catching any illnesses as a child. As a result, he catches colds easily and tends to be hit by them worse than everyone else. So I’ve had to make a huge change in how I deal with Pey being sick. Every cough, sneeze or feeling slightly warm, warrants a full nursing assessment and plan of care. Even though her counts may be relatively well while in maintenance, she is still considered immunocompromised.
Being immunocompromised means the body doesn’t have a strong enough immune system to properly fight infection. For our children with cancer, the most obvious reason for being immunocompromised is chemotherapy but there are other medications on treatment protocols such as steroids that can negatively impact the immune system as well. For this reason, CBCs are collected regularly after chemotherapy is given. The ANC has to be at a certain level before a child is discharged home during hospitalized treatment protocols like during induction or consolidation cycles. Sending our children into the world with lowered immune systems puts them at a serious disadvantage against any illnesses even common ones. It would be like me racing against Elaine Thompson-Herah in the 100-meter dash. For non-Olympic Track fans, it would be like going head to head with Paul Hollywood in a baking challenge. Not only are our children at risk for infection through usual routes like catching a cold through their respiratory system, but they are also at risk from the medical devices used in their treatment like getting an infection through their central lines. Having an opening in the skin is an entry point for germs as well as in the entry site for a central line. That is why line dressing changes are done as sterile as possible and the site is cleaned with powerful cleaning agents. As parents, we have to be conscious of what our children are exposed to and trust that those handling our children’s lines are following best practices. Therefore, it is not a huge leap that we may develop obsessive cleaning routines, anxiety about catching illnesses from others, and implement rules regarding mingling with others outside of our household. We are therefore given the challenge of creating a safe bubble for our children without limiting their life experiences and the ability to behave like the average child.
I don’t know how other parents are feeling but being in our second year of a pandemic and still having mask controversies makes me distrustful of others and possibly their compassion. I was cautious and hesitant to send my eldest to school when I still had the option to keep her in preschool for another year to avoid the risk of exposure. I almost had a panic attack when two parents in the pickup line were discussing their COVID-19 fatigue and no longer cared if they caught it or not. How can people be so callous should they get COVID and their child exposes it to my daughter thus putting our immunocompromised child at risk? I am constantly in fear that she will bring something home. She has access to hand sanitizer at all times, we wipe down her backpack from school, have her wash her hands right away, and had discussions about wearing her mask unless she’s eating and not to touch her face. Yet she still has managed to bring home two colds in three months. It was so hard balancing caring for her with my anxiety to prevent it from spreading to Pey. However, it was too late on one occasion. Pey started having cold symptoms within a day and developed a fever the next. I was in tears.
For a child with cancer, a fever is an automatic admission to the hospital. Research has shown improved outcomes with starting antibiotic therapy quickly. So usually it is a mad dash to pack everything that you or your child might need for at least two to three days until the results of blood cultures come back. However, it is not just trying to get out the door quickly without forgetting anything. Rushing to the hospital also disrupts the family dynamics. With Pey’s last admission, we had to quickly figure out who was going to stay with Big Sister as we went to the hospital. My mother-in-law was willing to stay the night to help us out. Then it was a question of who would pick her up from school if we had to stay longer than the weekend. Then it was the feeling of guilt of having to leave late at night while Big Sister was sleeping and knowing she would wake up in the morning with her sister and mom gone without a proper goodbye and explanation.
With all the consequences of a fever, it should not be a surprise to anyone that parents of a child with cancer are more vigilant when it comes to cleanliness and who they feel comfortable being around. There was a parent, I remember, who used to wipe down the hospital room with Clorox wipes before letting his child come in. Plus there is so much riding on us to keep them safe at home and in the world. Pandemic or not, our children would still have been required to wear a mask in public to protect them from others. Then there’s the fear of what happens if someone in your household gets sick. What lengths would you go to to keep it from spreading to your child with cancer? Or is it almost inevitable and all you can do is cross every finger and toe and pray they don’t get sick? For this, our family and friends need to be understanding when we ask them not to visit if they are sick, wash their hands before coming near our children, and not be critical if we as parents are hypervigilant. So I’m doing the best I can to give her life experience and keeping her safe. Although who wouldn’t want the ability to disinfect themselves and everything coming into our house like in the movie.
Leave a comment below of the craziest thing you’ve done or seen to avoid infection. Don’t forget to subscribe to Child Cancer Mom below!
