Practical Tips When Dealing with Neutropenia :: Our Experience

Disclaimer :: I am in no way a medical professional; this is solely my experience with the neutropenia. Please consult your doctor if you have any questions or concerns regarding your child’s health.

A little boy sits on a hospital bed hooked up to a monitor.“Try not to Google too much,” the pediatrician said after the third round of blood work that showed our one-year-old son had low neutrophil counts. “No one writes about the time when everything turned out fine.”

Of course, I Googled anyway. (Later, I assured my pediatrician that I Google responsibly.)

About as far from the medical field as one can be in their career, I started with the basics: What is neutropenia? Neutrophils are a type of white blood cell. They are responsible for fighting bacterial infections. Neutropenia is chronic low levels of neutrophils in the body.

What does this mean? It means that neutropenic children might have trouble fighting bacterial infections without the help of antibiotics, and they might get sick more often because their immune systems aren’t as robust as they should be.

>> RELATED READ :: 8 Tips for Managing Your Child’s Health Care Visits <<

We were referred to a pediatric hematologist — the same type of doctor who diagnoses cancer. Even though we were told it was highly unlikely that this was related to cancer, waiting for the appointment was agonizing.

After bloodwork and a wait time for the lab to process it, we met with the pediatric hematologist. The doctor assured us that neutropenia is not, on its own, related to cancer, and we were put on something called the “fever protocol.” This means every time our son had a fever of 100.4 or higher, we had to take him to the emergency room so doctors could start the precautionary measures taken for neutropenic kids.

We would continue to bring him in for regular appointments to check his neutrophil numbers, and at some point he would outgrow this, and his numbers would reach a normal level. (The only timeline we were given was that “most outgrow it by kindergarten.”)

On the way out of the cancer ward, I said a prayer for everyone who gets a different message from the doctor.

Three Trips to the ER in Six Months

Often navigating unfamiliar roads in the middle of the night, I drove my son to the ER for a mild fever three times for bloodwork and precautionary antibiotics while my husband stayed home with our then four-year-old daughter. Each trip lasted about eight hours (roughly four showings of Encanto on our tablet).

Any mom who has taken her child to the ER knows it isn’t an easy experience. Each time, I helped several nurses hold my child down so an IV needle could be inserted into the top of his tiny hand. This is not a simple task, and I spent 20 minutes with my head next to my son’s, telling him over and over to “just stay with me,” while he screamed in pain and fear.

And, not for the first time, I realized that as mothers, we do what we have to for our children. We are adaptable, and we are resilient.

An emergency room hospital sign.Our son was neutropenic for six months. At the hematology appointment that turned out to be our last, I fought with the tablet, tried to soothe my screaming child with an applesauce pouch that went everywhere, and wondered how much longer I could do this.

Those six months felt very long. And along the way we learned some things. Here are practical tips for navigating neutropenia:

1. Join a support group. Consider the Autoimmune Neutropenia Support Group (For Parents of Children with AIN)’s Facebook page. You and your child are not alone.

2. Invest in multiple thermometers. The most accurate are the ones used under the tongue, armpit, or swiped across the forehead. (Every hospital and doctor’s office we visited used the forehead ones.)

3. Keep track of every time your child’s actual neutrophil count (ANC) is determined. Think of this as data points. The more data points you have, the clearer the picture of what’s happening. I wrote them down on a piece of paper, and every time we met with a pediatric hematologist, he or she pointed to the paper and said, “This is everything I need.”

4. Consider a smaller hospital with pediatric hematologists, like Medical City. The process was much smoother and less overwhelming this way. (We switched from a larger hospital to Texas Oncology-Medical City Dallas Pediatric Hematology-Oncology, and it was a much better fit for us.)

>> RELATED READ :: 6 Immunity-Boosting Foods to Keep You Healthy <<

If you, too, are ignoring advice not to Google, here is the article where everything turned out fine. As moms, we show up for our children even in the hardest of times. And this is the message they receive from us: I can’t stop the bad things from happening, but I promise I will be there with you.

Neutropenia is rare, and even the “easiest” experience isn’t easy. But many times, it is a matter of waiting and going through it until your child outgrows it. Contrary to popular belief, worrying isn’t what moms do best. It’s showing up. 

Staci Fonner
Staci Fonner is sometimes a lawyer, sometimes a writer, and always a mother to her daughter Sydney and her son Parker. She is passionate about parenting well and learning whatever is needed in the process. As an enneagram 8 who loves reading, baking, and traveling, you’re likely to find her watching The Great British Bake-Off or browsing a bookstore with an iced coffee. Staci and her husband Daniel have lived in Pittsburgh, Pennsylvania, The United Kingdom, Dallas, and recently located to Allen.