Treating a child with fever and leukemia

I walked into Room 35 to find a three year-old lying on the hospital cot. Her father sat alongside her bed, whispering softly to her. The patient appeared quite tired, wiped-out even, and if it weren’t for her complacent eyes tracking my every move, I would have thought she might be sleeping.

She was visiting our ER because, after a few days of cough and congestion, she had developed a fever. 102.2. Not such a big deal, usually, for a healthy child. Unfortunately, this child was not healthy.

She had leukemia. Acute lymphocytic leukemia (ALL), to be exact. And because she was currently receiving chemotherapy, a fever with an immunocompromised system could signify tremendous trouble for her.

Because of my experiences with my middle child, Cole, who sadly spent two of the first six years of his life battling his own life-threatening illness with multiple chemotherapies, I was well-aware of the concerns of this family. Besides the concerns, I was also well-aware of the lessons of bravery and love, of sadness and heartache, that came with this child’s illness. Immeasurable. Five years after our own journey, I can easily see that I am a better man and a better physician from our experience. A better human being, actually.

I knew how to help this family through this crisis.

This beautiful little girl, with her brown, wavy, returning hair, had been diagnosed with ALL last summer, following symptoms of significant fatigue. She had been transferred to Children’s Hospital, where she had a mediport placed and began an aggressive regiment of chemotherapy, high-dose steroid therapy, and prophylactic antibiotics. And, happily, she responded well. Her chemotherapy, just eight months after her diagnosis, had just been reduced to the maintenance phase. Instead of receiving IV chemotherapy every week, she now only needed to receive it once a month. The steroids, the antibiotics, and the oral chemotherapies were continued on their regular schedule.

So, her fever–where did come from? The typical cough and cold symptoms had passed through their house. Mom first, then Dad, and then this patient’s younger sibling. Against offered prayers, she was the last to get the runny nose, the congestion, and the coughing. Ten hours before arriving at our ER, she had developed a concurrent low-grade fever that steadily climbed until her presentation for treatment.

Dad brought his precious daughter to us, entrusting us to do right, while Mom stayed home with the younger sibling. He walked through our ER entrance, explained to our triage receptionist and nurse what brought him and his daughter to our ER, and was immediately escorted from our busy waiting room, where his daughter might be exposed to other illnesses, to an isolation room. The door was shut and reverse isolation warnings were placed. Until we learned the status of her immune system, we would take no chances of this little girl getting exposed to any further illnesses.

Anyone who wanted to enter Room 35, while this little girl was being treated, would need to don a mask and gloves and a sterile gown. That included myself, the nurses, the IV team who would access her port, the radiology techs who would take her portable chest x-ray, and our phlebotomists.

So, this is how I met my brave little patient and her father, wrapped in a sterile, disposable, pale-yellow gown, with a blue mask clinging over my mouth and rubber gloves snugly fitting my hands. Hardly a welcoming outfit, but necessary.

“Good morning, Meghan,” I said, speaking through my mask, watching the little girl’s eyes slowly follow my movements, “I’m Dr. Jim. And I am going to help you feel better today, okay?” I looked for a little spark in those complacent eyes, but, sadly, there was none. Between her fever, not feeling well, and probably expecting to be poked and prodded, she looked miserable.

After talking with Dad, he with the heartfelt smile and calming voice, I performed my exam on Meghan, who appeared so fragile and tiny lying within the cot’s hospital blankets. She had an obvious cough, somewhat wet. Looking in her ears, I found a whopping left ear infection. Crusty nares. A patent, non-reddened throat. Her heart and lung exam was perfect. No abdominal pain. Her extremities were unremarkable. Most importantly, she had no rash.

Interestingly, her mediport was not near her collarbones, or clavicles, where I usually find them. Instead, it was on her right lateral mid-abdominal section. “They had a hard time placing one up by her neck,” Dad said, “so they put it there instead.” The mediport is basically a little pin cushion, placed under the skin, with tubing that is inserted and anchored to a larger vein. When accessed with a needle, it can be used to administer fluids or medications and withdraw blood. Basically, it functions as a permanent IV. After a successful outcome, the mediport is removed, leaving a battle scar about 1-2 inches long.

My son has two, one near each collarbone. Two battles. We won that war.

With Meghan, we accessed her mediport and obtained blood to check her white counts and for cultures. We obtained a urine specimen to check for infection. We performed a chest x-ray. After all of that, we administered a dose of IV antibiotics and a dose of Tylenol.

Happily, her test results returned in her favor. Her chest-ray was negative, absent of any infectious findings. Her urine results were clean–no infection. And her blood counts? They were low, as we expected from her chemotherapy, but not dangerously low. She had a sufficient immune system to fight off this infection.

I called her hematology/oncology team and shared our workup and findings with them. Meghan had the same team as my son, and I was familiar with the person on the other end. They were appreciative of our efforts and we arranged Meghan to be seen by them in two days.

I walked back into her room, smiling, ready to deliver some good news for a change. I no longer needed my gown, my gloves, or my mask. Hopefully, Meghan would be able to see my happiness for her, plastered all along my face’s edges. I had a bounce in my step.

If I thought I was happy with her results, seeing Meghan after we gave her fluids, antibiotics, and Tylenol simply made me ecstatic. She was a different child. A beautiful, smiling, interactive toddler was sitting upright in her cot, playing with stickers, eating a blue Italian ice, and watching a funny cartoon on the room’s TV. Her fever had obviously broken. And looking at Dad, ten years had been erased from his face.

For a split moment there, I forgot about Meghan’s fight for her life.

And in this moment, a spark had returned to her complacent eyes.

After spending some enjoyable time with both Meghan and her father, I walked back to my hallway desk, lost in my own thoughts, suddenly thinking about the five years that have passed since my son’s complacent eyes regained their permanent spark. And I said a few silent prayers. One for my son. One for Meghan. And one last one, for every child who’s eyes have lost their spark.

May they someday get it back.

StorytellERdoc is an emergency physician who blogs at his self-titled site, StorytellERdoc.

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  • stargirl65

    I cried after reading your post.

    I too have been on both sides. Sitting helpless while my immune compromised daughter ran a high fever due to low platelets (7K) and low ANC (100). No cause for infection was found. She initially was delirius and combative. After her fever abated and they were done with the initial evaluation she was more peaceful and the spark returned. This happened several times over her year of chemo. Now she is 2 years out but we are still crossing our fingers.

    I am not sure if it is easier being a doctor and parent of a sick child or worse. You understand everything the doctors are doing and why. But you can see every bad possibility as well. Not very comforting. Maybe ignorance is bliss here. I don’t know.

    The hardest part was that despite all my years of medical training there was nothing I could do to cure my own daughter. In fact her problem is so rare that there is little data on how to treat her problem. All the studies I reviewed had 2-10 participants. Luckily she is in remission for now. The tumor is no longer growing, but since in the spinal cord, they have decided for now not to reoperate. They do not want to cause more damage than already exists from last time.

    Very little cancer research money goes to children’s cancers. Most of the children cancer moneys go to leukemia and lymphoma. The rest of the pediatric cancers getting very little funding if at all. We need to look into spreading cancer moneys around so our children will not have to suffer so much.

  • Healthcare Observer

    Just a small point – you surely don’t mean ‘complacent’ eyes…

  • DanaW

    My story is a little different. My cancer battle started 7 weeks after the birth of my second child, the day before my son’s second birthday. We celebrated the 2 year mark of my diagnosis last Thursday, and so far, scans show successful treatment for Stage IIA Hodgkins Lymphoma.

    Not only was I the patient, I was the parent, and I was deathly afraid of catching an infection. Hodgkins treatment (ABVD) can be compromised by medications such as Neupogen and Neulasta. So, two kids in day care and a job in pharmaceutical sales made me a little anxiety ridden. I wasn’t worried about losing a child, I was terrified of them losing their mother.

    Children going through treatment are such an inspiration because they don’t have a lifetime of fear and regret to face. There were times that I literally had no white cells. My counts were so low, infusion nurses didn’t know whether or not administer chemo. But, we made it though OK. A few scares, but we made it through, and I refuse to lose the passion for life that facing that bump in the road taught me.

    Thanks for the post – I’m sure it will reinvigorate many people to recall why they got into medicine despite all the challenges you face daily.

  • KENNETH KWAN

    thank you for that story.

  • EDGAR CAMPOS

    DOC. THANK YOU FOR THESE WORDS AT A TIME TO ANOTHER IS ARE TRANSFORMED THROUGH WHICH IT IS READING IN FILLED WITH HOPE AND LOVE OF MANY WORDS TO MOVE FORWARD, MY DAUGHTER WAS DIAGNOSED WITH! ON THE 24 OF DEC. 2009 AND SINCE THEN WE HAVE VISITED ER MANY TIMES, THE LAST TIME THAT STEP WAS MAKES TWO DAYS AGO AND MY LOVELY TWO YEARS OLD DAUGHTER REMAINS IN HOSPITAL WITH FEVER OF 104.9 FOR OVER 24 HOURS, AT ALL TIME MY PRAYERS ARE NOT ONLY FOR HER BUT FOR ALL THOSE WHO NEED IT THAT A GOD, MY HEALTH IS NO GOOD, AN ACCIDENT THAT I HAD ME LOSES MY MEMORY,I HAVE DONE ME TWO SHOULDER SURGERY AND I HAVE TWO CHILDREN MORE TO CARE, WITHOUT HOWEVER ALL THE PAIN I FEEL AT THE TIME IS CONVERTS IN THE MORE GREAT HOPE OF THE SOME DAY VERY CLOSE DISCOVER THE CURE FOR THIS DISEASE THAT INCREDIBLY US TRANSFORMS IN BEINGS WITH A BETTER VISION OF THE LIFE, WE BECOME BETTER PARENTS, TRUE FRIEND, BEST BEINGS, AND ABOVE ALL WE LEARN TO BE GRATEFUL FOR ALL THAT WE HAVE, THANKS DOC.FOR DO ME MORE FORT WHICH WAS BY HIS PRAYER FOR ALL THOSE WHO IT WE HAVE NEED IT IN SOME POINT OF ANGUISH AND FOR GIVING ME THE OPPORTUNITY TO FOLLOW YOU EXAMPLE, THANK YOU AND GOD THAT THE BLESS YOU AND YOUR FAMILY.