Mommy Guilt Gone Viral

I am reading a book called "Hope and Suffering - Children, Cancer, and the Paradox of Experimental Medicine".  It details the medical and social changes from the 1940's through 1980's; a journey of childhood cancers, specifically leukemia, from unrecognized, to untreatable, to experimental, to largely curable.  It's a great story in some ways because medicine/science really has prevailed.  Leukemia used to be universally fatal within months.  Now about 90% of kids with ALL can be cured for life.  But this progress came at a price.  Kids were basically experimented on for years because parents and physicians were desperate for anything.  Even agents that only bought time and didn't change the eventual outcome were willingly taken because it might keep them alive until a cure could be found.  The meds were toxic, the effects of the disease were terrible, and children and families alike suffered horribly.
But there's another part of it the bothers me and really hits home.  As soon as childhood cancers were recognized as existing as separate entities from adult cancers, the lay press and organizations like the American Cancer Society published material advising mothers to be on the alert.  They stated that they could save their child's life with their vigilance because early diagnosis was the key.  Which was completely bogus.  Science knew these diseases existed but there were no effective cures.  If you had a local tumor that could be completely excised, you stood a chance but the chances of detecting a solid tumor before there is at least nodal spread is so unlikely.  The book is full of stories of moms who took their kids to the pediatrician time and time again and were basically told they were crazy, go home, oh, and by the way the child turned out to have a brain tumor or leukemia or retinoblastoma.
Even now the majority of the parents that I meet blame themselves for their child's cancer diagnosis.  Childhood cancer comes up during a time when parents really are responsible for everything involving their children, and if not for the disease itself they always feel guilty for not bringing the child in sooner.  Still today, many children have seen their pediatrician a few times before anyone realizes it's more than migraines or a cold or constipation.  Uncommon things are uncommon and every child with a headache doesn't need and can't get a CT scan.
This whole book is set in an era when World War II was over and women were expected to come back out of the work force and have babies.  It was the Patriotic thing to do.  For the first time in our nation's history children were treasured as more than just parents' possessions and potential revenue sources.  Women's successes were judged by their parenting.  I just can't help thinking about all those mothers who watched their babies suffer horribly and die and were told by every newspaper and flier that went past their door that it was their fault.  If only they'd been a more attentive mother.

*****

Not that everything always has to be about me, but this is often how I feel when I think about Nate and his allergies and vomiting.  For so long I just didn't think anything could be wrong with my baby and I really overlooked and excused all his symptoms.  And to be fair the first pediatrician that we went to over and over really did tell us that i was being an over reactive pediatrician parent and nothing was wrong.  But now, when I look at my little boy, especially pictures of when he was sick, sick and looked it, I just feel awful, and I want to take it all back, go back and fix it, make those months of his babyhood less miserable.  This isn't going to kill him but it has plenty of power to make me feel like an inadequate mommy.

For this reason the first time I tell a parent that their child has cancer I also tell them it's not their fault.  It has nothing to do with what mom ate during pregnancy or whether they made the kid go to bed at 8pm every night.  I also tell them they brought the child in at just the right time and the job now is to go forward and not torture themselves looking back.

I hope it helps.

Hunger

I read the "Little House on the Prairie" series when I was in first grade.  I've reread it many times since and one or two things hover in my mind.
In "The Long Winter" Laura goes to a party where she receives an orange as a party favor.  "Imagine," she thinks in awe, "having an entire orange all to yourself."
I found myself thinking about this the other day when the "kids meal" came and included an obscenely large hot dog and more fries than Dave and I could eat together.  It cost nine dollars and we threw almost all of it away.

We think about food a lot in our house.  Nathan has had so many problems with food and weight gain that we know the calories and nutritional breakdown of a stunning number of foods.  Traveling, even going out to eat, brings up the "what-will-we-feed-him?" anxiety.  Dave's dad's recent brush with the reality of heart disease has thrown our eating habits into sharp relief.  Dave and I have both eaten too much crap and exercised too little since our little man came along.  We worry about eating out and finishing leftovers before they go bad.  Everyone has breakfast even if it makes us a little late for work.  I worry about waste - food bought and uneaten because Nathan didn't like it or we worked late too many nights in a row to cook it all.

All small worries compared to that shared by 1 in 5 American children.

Twenty Percent of American children live in homes where, at least once a week, they run out of food and don't have money to buy more.

Twenty Percent.

That means that in a class of 30 children 6 of them may not have had breakfast and may not be expecting to have dinner.  Six children whose grumbling stomachs will distract them from learning to read and write.  Six who may bully someone else out of their lunch or pick a fight or ditch a class or talk back to a teacher because they just feel so bad.
Some of these children don't have food because their parents have spent the money on cigarettes, alcohol, or drugs, but some of these children don't have food because a parent has lost a job and the cost of keeping a roof over their heads and the heat on is much more than their current income.

Feeding our children is possibly the most basic role of parenthood.  God gave women's bodies the ability to nourish the next generation.  It is believed that one of the many causes of the obesity epidemic in America's children is that parents don't like to tell their children "no" when they ask for food.  The reality in our country, however, is that 20% of our children are mildly malnourished because of the unreliability of their food source.

I don't pretend to know what the answer is.  Nutritious school lunches can help the children.  A declining unemployment rate would help whole families.  A single parent household has twice the likelihood of going hungry so decreasing that prevalence would make a real impact.

I also don't have an agenda.  I just think it is horrifying that this country, that overeats and throws food away and spends so much of our GNP trying to solve the problems of others, can't feed our children.  I think a lot of people don't realize how high the numbers are.
If you want to read more check out the Food Research and Action Center.
And please, think about donating some healthy food to your local food bank.  It is the only safety net that many families have.

Bothersome

One of the unfortunate facts about the hospital I work at is that it abuts a very old cemetery.  Through very careful forethought and planning there are no patient rooms that have a view of gravestones.  It is visible, through the trees, from the library.  The PICU family grief room originally had a clear view of marble mausoleums until they installed some stained glass to blur the harsh reality.  Otherwise, it is the physician offices and work-rooms that have the gorgeous views of ancient trees marching through the seasons. 

I don't mean to imply that we should hide the concept or possibility of death.  Our bodies all die eventually.  I just think that there is something unsettling about struggling with the illness or injury of a loved one and, needing a glimpse of the outside world, looking out a window to see a funeral procession.

In the oncology world we wrestle every day with life and death discussions, how to talk to children and their parents.  Some people want cold hard facts with no sugar coating.  Some want vague generalizations.  We're honest with all of them though the language changes.  We work hard to make our clinic a space of hope and to give all the happiness we can to families who spend many of their days worrying about what the last day will be like.  Kids run around the halls chasing a favorite doctor or nurse.  They do crafts while they wait.  The teens hang out playing pool or Guitar Hero.  Santa always comes.  Hope, as it has been said, springs eternal.

We do what we do for the kids.  That includes decorating for every holiday including Halloween.

But we also do it for the parents, and I wonder if any of them find this bothersome as they check in for a blood count and chemotherapy.

The Golden Years?

So far second year of fellowship is awesome.  I don't have much weeknight call - none at all in July, and so last night, on what would traditionally have bee the night I would have come home from work late and been on call and getting paged all night, Dave and I celebrated.
We sat on the deck, enjoying our new patio furniture, listening to the planes overhead and watching the fireflies blink.  We talked about truly deep aspects of our lives like tiki torches and Nathan's delight in his pint sized deck chair.
It was wonderful.
I do have one complaint though.
This morning I have itchy mosquito bites. 
I never got mosquito bites as a first year fellow.

Tribute

We met on an evening in September. When I got to the ER his mom had been crying. Someone had already told her that her 2 year old baby boy had a belly full of tumor.

He had big blue eyes, long eyelashes, and soft blond hair.
He also had persistent fevers, weight loss, and a listless expression
He had his mommy's hope and his daddy's heart in his hands.

This sweet little boy became many things to me.
The first (and God willing) only patient I gave the wrong diagnosis to.
When I corrected that mistake, I stood in front of his parents and told them that their child had only a 50% chance of being alive in 2 years. Another first.
The first time I a family the therapy wasn't working.
And the second.
And the third.


He never went anywhere without his pint sized hockey stick.
He usually traveled riding on the wheels of an IV pole.
He was a merciless and fairly eccentric fashion critic.
An exuberant hugger.
A fan of "The Price is Right"
A lover of "dip" (ketchup), "hot dip" (wing sauce), and Shamrock shakes.


He had wretched luck. Terrible toxicities from every single drug, slow recovery times, blood clots, infections, and ultimately, he was the first of my patients to fail to respond to every treatment we offered.


When it became clear that everything we were doing was making him miserable and nothing we were doing was stopping the tumor from multiplying in belly, lungs, and bone marrow, his parents decided to take him home and treasure having him and his sister together for as long as they could.


He died recently, a few months shy of his third birthday and just 7 months after he came into my life.


When I think about him, I can't help but remember the way those tumor cells looked under the microscope. Large and angry, clumping together and pushing the normal cells aside. Bullies imposing chaos and pain and heartache on the innocent. You could see them in the act of replicating. Always fresh troops to make him thinner, weaker, and to make his parents eyes more empty and haunted.


Mostly, however, I think about how fine and soft his hair was when it started to grow back after the chemo. I remember hallway hockey games and the times he would let me carry him around, dragging his IV pole behind us. I remember how cozy he looked curled up in bed with his bear of a father and how his Elmo slippers were almost as big as he was. I think about his smile and how he glowed when the music therapist came in with her xylophone. You could always tell what room he was in by tracking his mother's laugh but he was generally out of his room putting smiles on the faces of nurses and patients alike. He was a kid and he didn't like to let being sick get in the way of his play time.


I miss him. I am lucky to have met him. I wish I could have done more.
I am glad that there is no more suffering.


Neuroblastoma is a terrible disease and I hope someday we have a cure.

It's Been A While

Fellowship is a lot of work and I've spent my out of work moments with my boys at home so I apologize for my absence from cyberspace.

I love my job. I like the people I work with. I like the patients. I like the science I am learning and the clinical medicine I am practicing. I am developing my own ways of talking to parents and patients and have received feedback that these ways are not completely dysfunctional.
I'm not terribly fond of benign hematology but I do derive a lot of satisfaction from taking care of cancer patients and their families. I am asked a lot why I chose to do this, and there is a fairly straightforward answer.
Hope.
In my experience working all over a children's hospital, there is no better environment than the pediatric cancer ward. Everyone thinks their patient population is special, but these are truly awesome kids, families, nurses, doctors, child life specialists, and social workers. I have not been anywhere else in the hospital where there is less whining, more resilience, more support and people caring for each other. Kids are kids. They aren't held down easily. They make friends with the people who take care of them week in and week out and everyone develops special relationships with their patients and their families. It's common to see a small band of children, all in crazy spunky hats roaming the halls of the clinic looking for a favorite nurse or doctor to take a picture, give a gift, or play a clever prank.
The outcomes for a lot of pediatric cancers are pretty good and we make a lot of these kids better and let them get on with their lives. Even those with the poorest outlook are treated like survivors by parents and staff. No one ever stops hoping that they get the best they possibly can.
Still, there are hard moments. Telling any parent their child has cancer. Telling a new high school grad that he'll be taking a detour on the way to his adult life. Watching a colleague suffer through the loss of a patient they have known and cared for for years. Looking at a sick little boy and just wanting to go home and hug your own baby knowing there are hours yet to go. Fearing that the karma of telling someone they will likely loose their own child will come back to bite you in the ass.
I often feel bad that I am fascinated looking at pathology slides, that I use the word cool to describe an imaging finding that will change a whole family's life forever. Still, I am here because the science fascinates me. And because the children move me.
This weekend was harder than any yet. In a sink or swim moment I sat with a family and told them that their little guy has one of our hardest to treat tumors and has a coin flip chance of being alive in two years. I did it with out the benefit of an attending physician present. Since then I have had the conversation swirling in my head trying to determine what I could have done better. I have told people before that their baby (aged 3-19y) has cancer but those babies were very likely to live to graduate from college. It's an easier conversation. This one was not.
I hated it but certainly not as much as they did.
I am humbled that the mother exclaimed "Look, E***, it's your friend Dr. Jen!" when I came back the next day.

I feel inexpressibly fortunate to have a healthy, smiling little boy.

A Matter of Respect

I have speculated before how this year would be different for me. As a medical student and resident I was always very subservient. The hierarchy in medicine is very well defined and while it is more flexible in pediatrics than other branches of medicine, it is still definitely observed. I was always painfully aware of where I fit in the hierarchy which was basically at the bottom.
I had a year off, however, and worked as an attending, definitely closer to the top of the hierarchy. Accentuating the position difference was the fact that I worked at an adult hospital where the nurses call you doctor, instead of using your first name like they do at a children's hospital. I really felt like an in-charge professional. In addition, I had Nathan and my priorities underwent a major frame shift. Because of those things I knew I would be less content to be subservient and be a much better advocate for myself and my time. Until now, I really had not been tested.
Yesterday, however, I did something I would never previously have done. I walked out on a conference.
I was at a conference that was supposed to start at 4pm. Now, no one really expected it to start at 4pm because the attending has a reputation for perpetual lateness. His patent quote? "The name means good time, not on time." It's supposed to end at 5:15 but it basically ends an hour and a half after it starts, no matter when he deigns to arrive.
I am the opposite. I am almost pathologically on time. I know I used to make my mom crazy because to me, on time was actually late. I firmly believed that the only way to ensure being on time was to be early, and got a little hysterical if my chauffeur did not support me in this. Today, I still feel that way, preferring to be the first to arrive rather than risk being late. I find being late extremely disrespectful to the people who are waiting for you. Its sends a message that the person being late believes their time to be more valuable. I used to put up with it, but I no longer believe my time is less important than anyone else's. I have a lot of things to do and a lot of people depending on me, and I put in an effort to be on time. I deserve nothing less.
Yesterday, it was 5pm and the 4pm conference had not yet started, and I just snapped. I knew that he expected to walk in when he was ready and find us all sitting there expectantly waiting to be taught. I also knew he would offer no apology and that it had never crossed his mind to call and tell us he would be late. So I left.
A little finger of guilt nagged me as I walked out the door, but it was gone by the time I got to day care to pick up my boy; someone whose smile is undeniably more important to me than the good opinion of someone who doesn't respect me at all.

Thoughts on the Beginning

"Every new beginning comes from some other beginning's end." - with apologies for not knowing the source.

I have made it through the first three week rotation of my fellowship. I spent those three weeks on the inpatient oncology service taking care of patients at all stages of cancer diagnosis and treatment. I guess it sounds like it could be sad, but to me it is a place of incredible hope. A place where we treat every child as if they have a chance of growing up and going to college, and really, most of them do. For me, it flew by. The hours were long. It was challenging. I learned a lot. I met wonderful families and acquired my first few patients. I had an excellent teacher. I missed out on several hours of sleep. I turned out to be very good at what I do. I also loved just about every second of it.

The only downside for me was missing my family. I don't think much about it at work because I am busy and time flies, but when I get home I ache for how much I am missing. While I have been working, he has learned to sit on his own, sprouted a tooth, and gained excellent hand eye coordination. One of the best parts of my day is snuggling him to sleep at night. He reaches up and grabs my cheek and then snuggles his face into my chest and we usually doze off together - sometimes me first.

This next 3 week period is supposed to be a little easier and maybe I'll get to spend more time with my family. I'll miss it though. It really helped clarify what I want my grown-up job to look like.

Aren't baby butts cute?!?!?!?!?!?!?!?

Vanquished

When I thought about staying in Pittsburgh to do my fellowship, there was only one thing that truly scared me.
It was a person. A person with a reputation for an abrasive tongue, a short temper, and a long memory. This reputation was not only amongst the pother residents at my hospital, but also was made evident when I traveled across the country interviewing at other programs.
Outside of reputation, though, I had reason to be afraid. This person had attempted to get me kicked out of residency when I was an intern. I never was entirely clear on what I had done wrong, but it was clearly VERY wrong. Though I still don't know if they remember me and the incident, I know what it is like to be on the receiving end of that anger.
Still, I am no longer a scared to death intern quaking in my shoes when someone looked at me cross-eyed. I was the one in charge for a year. At this point, no one's expectations for me are higher than my own and I strive to live up to them. With all this in mind, I was very philosophical about coming back to fellowship and having to work with someone who probably didn't like me. Calm. Zen. In control.
And then I found out that on my second week as a fellow I was on an inpatient service with this person and my heart sunk. Bravery/bravado is one thing, but I really wanted to get off to a good start. I wanted to enjoy this bit at the beginning and suddenly I expected only to endure and try not to cry.

I am pleased to report that it went MUCH better than my expectations. We actually had a good time. There was teaching and learning and a little laughter. I was only snapped at once and while it did make my head spin, it was quickly followed by a sincere apology and a statement of appreciation for how hard I was working.

I actually am looking forward to working with this person again. I believe they have a lot to teach and realize I am motivated to learn.

All in all, I would say the first dragon has been vanquished.

Fellowship - Day One

For anyone who's wondering what I am thinking this morning as I get ready for my first day back at a "real" job.

1) I'm tired because my sweet boy stayed up late and woke up early (almost as if he was trying to prove the folly of my ways)

2) I'm happy because I got up a wee bit earlier than I had too and so 15 more sweet minutes of sleep are mine in mornings to come.

3) I am excited because I get to go back and see all the people in the Heme/Onc department whom I like so much and genuinely have missed the last year. (I am going armed with baby pictures, of course.)

4) I am nervous about having to find my way around the new hospital. Despite the fact that Children's is home, I have no idea where I am going this morning.

5) I miss my visitors, the Wheelers from California, who selfishly went home yesterday and left me with reality again :) but not before a whirlwind tour of toddler friendly Pittsburgh!

6) I don't want to send Nathan to day care all day. I am more than a little nervous about how he will react to the change, especially since he was "all-mommy-all-the-time" last night.

7) I am now pleasantly full off Egg Beaters, Veggie sausage, and blueberries, so it is time to pour my coffee and go!