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.
As always, big thanks for reading. May your weekend be a great one. See you Monday...
Friday, April 23, 2010
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18 comments:
having gone through chemo with my husband this year i cannot imagine the pain of seeing your child go there. thanks so much for being the one to treat her.
smiles, bee
xxoxoxoxoxoxo
I think that's a tear in my eye. You do a great job of capturing the fear of that moment for Meghan and her father as well as the concern for her battle. I cannot imagine what it'd be like to go through that myself, with any of my future children, or even watch from a close perspective. While I was in high school, my advisor's son was battling leukemia (age 5). I remember the days when Brian was mysteriously not in class. The days when he eyes showed he hadn't slept much. The says when he'd pull me aside and using our secret code basically say, "We need your prayers desperately." The days when I asked how he was doing and instead of answering for himself he said, "Caleb's good." What about Audrey? Nancy? You? It didn't matter because Caleb was good. Your snapshot story shows the same thing Brian's eyes did many days: concern and relief. Caleb's now two years cancer-free but that doesn't mean everyone elses' stories have ended so well. In 7th grade, my sister lost on of her classmates to leukemia. While my family's relationship with the dreadful disease is distant, it still exists. It breaks my heart but the new-found strength and the faith and trust in the Lord that grows from it is remarkable.
No, that's not a tear in my eye. It's a tear on my cheek.
<>< Katie
I've been a nurse for a very long time and I can count on one hand the physicians I've known who I felt were not only great docs but wonderful people. You are on that hand. Thank you for all you do.
Yet another reason why I don't work on a PEDS floor. I have a hard enough time seeing my geriatric pts this way, but a child. It would break my heart. I love working the floor I do where we see mostly old folks. My heart goes out to not only this girl and her family but you and yours as well.
Now I am off to bed wiping the tears from my eyes. :'(
When I volunteered in Kenya, we had a patient one morning - a little girl with a rash no one on our team could diagnose. I remember going back to our house later that day and writing in my diary, like I did most days. But this time, the first sentence put to paper was about the lack of a spark in this little girls eyes.
Unfortunately we didn't get a spark back, and I think about her every so often - in fact she was featured in my admissions essay for medical school.
I'm glad you were able to help her! I only hope you continue to remember the success stories just as much as the non-successful ones.
Thankfully I have never had to go through a serious illness with my children, but if I do, I definitely want to entrust their care with a doctor like you. You never fail to show that you genuinely care for both the patient and the family. Bless you Dr. Jim, for everything you stand for and do.
I have my own medi-port...I can not fathom seeing one on my child. Or having the diagnosis that would require it.
I've learned all too well this past year that the compassion of your medical team makes all the difference in the world. Don't ever think it doesn't.
Thankful for the good outcome. :)
I remember that lack of spark in my own daughter's eyes when she was 7. She'd come down with a stomach bug. On the third day, instead of looking and feeling better, she was quiet and pale, still with a low fever, and uninterested in the world. It was just not like her. Yes, I took her to the U.S. Army hospital's ER (we were living in Germany) and the doctor there immediately saw that she was dangerously dehydrated. They set up an IV and got fluids right back into her, and the change was almost astonishing. I felt terrible that she'd gotten so dehydrated, but the doctor told me it could happen easily when I child wasn't eating or drinking (she couldn't hold anything down). Thank goodness for that ER and that doctor ... and thank goodness for you and your careful and compassionate care for that little girl, Dr. Jim.
Whenever I read your posts, I expect myself either to laugh or tear up. I was already three-fourths of the way through this one when I felt neither (sadness for the little girl, of course, but not tearing up) and I thought, "Huh, weird."
Then this line got to me: "And looking at Dad, ten years had been erased from his face."
I could picture and feel it perfectly. I sighed a relief and held back tears. You and your posts (and everyone who cares and works the way you do) are amazing.
I am so glad you were able to help this little one. I'm so glad things were able to turn around.
I remember one incidence of having to have reverse isolation. It was an awful feeling to see everyone covered up and you couldn't see their faces, their expressions. Even though they were doing it to protect me, it felt awful, and I was an adult. I so feel for the children that must endure these things. Life isn't fair.
Accessing those ports hurts too.
Thank you for being such a great Doc! I'm sorry you had your own battles, but it was because of those battles that the Universe sent YOU to care for that family.
Compassion, understanding, empathy, genuine care...whatever you want to call it, you have it in spades.
Thank God for the better outcomes for both children.
You certainly do understand and know how to help others in this situation. Pain teaches compassion for those of us willing to learn.
They were blessed to have you. It must be so rewarding to help others that way.
It hurts to see little children ill for any reason ..but especially when life threatening.
The ER's fast response to reverse barrier and all is great. Both you and your ER team are wonderful.
I'm the opposite of littlepretendnurse at April 23, 2010 12:13 PM. I have a hard time emotionally seeing geriatric pts that sick. I love paeds because many of them respond well to treatment. Even those who don't respond well, we are always on their side fighting for their lives with them. And when the spark comes back to their eyes, especially the pre-schoolers, it's heaven!
Cancer and kids should never mix, it just seems too unfair.
Kids eyes really loose their spark when they are ill, and I can spot my daughter is coming down with something just by glancing at her face... I can it her "ill eyes". Also, when they have one of the many countless viruses they get and run a fever, it is amazing what a dose of tylenol or motrin does, it is like magic!
Jim I guess when you work in that kind of environment, it is sometimes hard to write happy stories. This one was happy and sad at the same time. You know I still have visions from 5-6 years ago too, when I spent one day of the week with my cousin at the sickKids (lymphoma, he is okay now thank God, and thanks to doctors of course). But the vision I have were the little children, mostly with leukemia walking with the apparatus attached to them, and they were small, yet some had smiles on their faces.
Jim thank you again for sharing your story.
Anna :)
I thank God for the positive outcomes for both of these children. And I pray for those children with the non-sparkling eyes.
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