Oncology Day :: N30020 Clinical Journal Entry #19

Did you know that a child's leukemia takes 3 years to treat, maybe a little longer if the child is a male?  Did you know that every day, all over the country, kids pile into outpatient oncology offices to see doctors and nurse practitioners or to receive chemo or blood transfusions?  Or how about the safe "dosage" of any blood product?  (It's 15-20mL/kg.) 

Those are just a few things I learned and experienced on Friday when I got to leave our clinical floor for an "alternate experience" at the hospital's outpatient pediatric oncology (aka "hemonc") unit ...

For 8 of our clinical hours, I experienced a field of nursing that has always seemed interesting to me.   I think it all started a few years ago when my grandfather died after several weeks of fighting in the hospital, after several weeks of our entire family practically living on the oncology floor.   I spent my entire spring break and most of my time out-of-classes there with them, and I marveled at the compassion of the nurses and the strength of the other families there.  Grandpa died there, and the experience was absolutely excruciating, but the nurses helped us through every step.  I've worked enough on different floors as a student and nurse technician to know that I need a floor where I can join other nurses to care and use our hearts every minute of the day.  Most floors just aren't like that, but the oncology floor was.  And then, I've wanted to work with kids ever since I wanted to be a nurse, but at times I've wondered if I was strong enough because of my past and also because I really think if any nurse would get compassion fatigue, it would definitely be me.  I do everything with every single piece of me - I can't help it.  I have a problem "leaving it at work," and I take it on as a personal job to make sure every single patient I encounter is treated like the best person in the world with everything I can find to give.  But Friday taught me that I really feel I want to go into pediatric oncology.   

First thing in the morning, every single day, around 7 or 8 doctors and nurse practitioners and a handful of nurses join a psychologist, social worker, secretary, and child life specialist to discuss the day's planned children and where they are in their treatments, what their latest tests have revealed, what they were coming in for (chemo, consolidation, blood, visit, tests...) etc.  It's an amazing 45 minutes where every person is completely in tune to what's going on so they can cater their speciality to the kiddos as best as they can.  Knowledge is power, and these meetings really displayed that.  The unit just exudes cohesion.  Everyone is on the same page.

After the AM meeting, the patients started rolling in.  For each new folder we'd see in the "inbox," we'd walk to the waiting room and call the child's name.  The nurses all know the kids inside and out, so usually it's more of a, "Hi, Amber, how are you doing?  Wow, I love your coat!!  How was school this week?  How is your new puppy?"  Then came vitals, and we'd do a height, weight, BP, and temp on each child before bringing them into a room.  After a normal run-down of questions, each child would get a blood test (CBC, CMP, differentials, type and screen) either peripherally or through the ports in their chests.  I learned that the "Mediports" are like Hickmans, not Broviacs, and I learned the pros and cons of each.  Most of these kids have Mediports, so I handled an extra the nurses keep for an example, and I was able understand the idea of them so much better.  They can be challenging to draw blood from, but they make life a little easier for the kids.  We had to use a sterile field to draw the blood, and we wore masks so we didn't risk getting any germs into the port since these kids are so immunocompromised. 

Anyways, after we had our blood, we would flip the flags above the door to signal the doctor or nurse practitioner that their patient was ready, and then we'd send their vials to the lab  to be analyzed.  After seeing their practitioner, each child would hang out until their lab results returned.  If their counts were low, they would have to stay an extra few hours to get a blood transfusion.  If their counts were good, they could go home.  Some kids had chemo treatments scheduled for after their office visit, and they would go get started on chemo and sometimes receive blood later on.  Oh, and we monitored each kid on a big list the nurses made to make sure everyone has had their flu shot!

Chemo is a crazy thing.  To hang it, we had to put special gowns and gloves on, and before we gave it, the kids would often get IV Zofran to prevent nausea and vomiting.  The kids and their parents would each get their own room where they could watch TV, play games, watch movies, eat lunch, do whatever they wanted, and there was also a bigger room with a bunch of activities if a child wanted to go play with other kiddos.  They would hang out all day until their chemo and blood (and sometimes IVIG) were transfused, and then, exhausted, they'd go home.  For some of these kids, this is their routine 3 days a week, for others, 1 time a week.

I'm not sure if all peds outpatient oncology units do this, but at least for here, the doctors work closely with an organization called the Childrens Oncology Group, or COG.  COG, from what I understand, is an organization comprised of doctors, nurses, researchers, scientists, etc., and they work on maintaining very, very specific (down to the day) treatments for each kind of cancer, also dependent on the child's age.  Their treatment plans are called "roadmaps," and for example, it will say for ____ type of cancer, the child must get ____ kind of chemotherapy on day 35 of treatment.  Of course, each child's doctor could modify theirs if they wanted to, but outside of unusual circumstances, they don't.  Then, if the child and their family agree to be in the "study," the doctor would continually send in each child's progress on the treatment, samples of tissue if they get any kind of tumor removed, etc.  COG takes all of their patients on each of their treatment plans into account and will modify treatments if they "discover" something revolutionary or even just realize something isn't as successful as another option would be.  The plans are up-to-date and completely cutting-edge, and it's really amazing how this system works together.  One of the nurses told me COG is the reason pediatric patients recover from cancer at a much higher rate than adults.  Parents of kids with cancer are desperate to help out other parents, to help progress the study of pediatric cancer so that someday, it won't hit families like it hit theirs.  They are in this for their child, and they want to do everything they can to make sure this doesn't happen to any other children ever again.

There were three patients who really made an impact on me during the day.  L, R, and N.  L was a 10 year old who hadn't been to school in months because of her leukemia-stricken immune system.  She was in for blood and chemo, and one thing she was really dreading - 4 injections of a drug called asparaginase.  It's a form of chemo that has to be injected, 2 shots in each thigh.  To make it as bearable as possible, 4 nurses injected it at the exact same second after counting to three.  They're deep shots, but the drug itself is what makes it so painful.  L had EMLA cream applied before hand, and she also treated each thigh with ice before the injections.  L told me it just stings incredibly bad, and the sensation took awhile to go away.  This was her third dose of the "4 shots", and she only had one more left after that. I told her how amazing she did - I would have been bawling!  Not her.  These kids are strong.

Next, R was in his early-20s (if you begin in pediatrics, you can stay there for your course of treatment) and he was deaf.  He was so inquisitive, and using his mom as an interpreter, he asked me several questions since I was a "new face."  He kept flipping through a magazine extremely fast, not even reading, barely looking at pictures.  I asked his mom if he liked to read, and she said yes, but it's frustrating for him so he doesn't know many of the words.  Anytime he got to a word that was new to him, he would stop and look it up and then figure out how to sign it.  She said he would spend more time doing that than actually reading the book, so eventually it would frustrate him too bad. I had a few questions about it, and Mom explained something to me that I have never even thought about.  People who are born deaf only know the words they have learned how to sign.  So if a deaf person tries to read a normal book, it's likely that he or she will not recognize many words.  Who signs "thoroughly," "enormous," "periwinkle" or all of the fancy, long adjectives we've put into the English language that are only synonyms for simple words like "very," "huge," or "purple"?  That concept was just amazing to me. 

Then N.  When we called her from the waiting room, I knew I recognized her.  She was absolutely beautiful with long, blond hair and pretty eyes.  She was with a guy I assumed to be her boyfriend, and the more I saw her, the more I tried to remember how I knew her.  Every time my eyes met hers, I recognized the deepness of them and how exhausted, scared, and just how world-turned-upside-down she was.  She seemed so accustomed to her terrible routine, keenly aware it wasn't what other girls her age were used to.  She seemed like each visit to this office was just as hard as the first.  My heart felt hers, and it was so sad.  When the nurse was confirming her current medications, I was surprised to realize her "list" was similar to the portion of my "list" that falls under my car wreck pain and fibromyalgia.  Gabapentin.  Percocet.  A few others.  Then I learned she was coming in because she was experiencing pain in a new area.  Cancer patients are in significant pain, sometimes the worst of all. 

Once we left the room, I asked the nurse what N had - I deducted that she was in pain, but there were no chemo meds, and her hair was long and perfect.  So apparently, she's terminal, but she's had cancer for several years now.  I guess they're not actively treating it at the moment or something, but her prognosis isn't good.  Then the nurse told me a story that made me realize why I recognized N's face.  A few years ago, her picture was all over the local news and MSNBC for getting a wish from Make A Wish that was quite different yet so heartwarming.  N was in love with the guy she knew she wanted to spend forever with, yet her time could run out at any moment.  She wanted to marry him, but she knew she would fall off of her parent's insurance, making her unable to get treatment.  So it was love or healthcare coverage.  Make A Wish decided she shouldn't have to choose between those two things, so they granted her wish of wanting a "commitment ceremony."  Instead of a traditional wedding and marriage license and losing her healthcare coverage, they had a formal ceremony with a minister, and he moved in with her and her mother.  Make A Wish paid for the wedding, reception, and honeymoon.

It broke my heart to remember the story I'd long forgotten about because N was in the same situation as Jonathan and I are in... marriage or health insurance.  It's a terrible, awful thing what kids like us have to deal with, to choose between.  Crazy world.

So for the entire day, I worked closely with the nurses, spent time with the patients, brushed up my IV connections/machine/hanging skills (since I haven't gotten any practice with the patients I've had this semester) and just really took so many things in during my day.  I wasn't ever bored, and I really enjoyed the pace.  It got busy at times, but not stressful-busy.  I felt like I belonged.  I even ate lunch with the nurse practitioners and asked them the paths each of them took to get to the jobs they have now.  You can learn so much from successful nurses who have been in their fields for awhile. 

You won't though, learn as much as you'll learn from the patients, from the precious kiddos who are fighting something most adults can't even find the strength to get through.  Yes, this floor could be hard at times, but on the other hand?  The kids - each and every one of them - are so full of hope and strength.  There's an amazing air of hope on the unit, even in the rooms of the kids you know aren't going to make it.  We had one teen who was literally at the edge of death, yet enormous efforts were still going on to fight the cancer we could, and of course, to make him as comfortable as possible.  What if one dose of chemo, a few units of blood, could give him just one more day with his family and his friends?  Would it be worth it?  We believe it would be.  And so that's how it goes.  Then the kids who are just starting, in the middle of, or wrapping up their chemo?  There's so much hope.  Hope that this is working.  Hope that the cancer is going away with every new treatment.  Hope that all this fighting is going for something.  Hope that the family will get through this.  Hope that this is just a really hard time but it will end soon.  Hope that tomorrow will be just a tiny bit better.

It's a good floor.  A good field.  The best nurses I've ever talked with, and the best, most courageous families.

Friday changed my life, and I loved it.  Absolutely loved it.