Don't Pray For Me Today

Today I go to the operating room. I have an excellent neurosurgeon who specializes in operating on precisely my type of brain tumor. Alongside him will be the best team of anesthesiologists, nurses, radiologists, pathologists, and other health professionals, taking care of me at the premier cancer treatment center in all the world. My family and friends are with me.

I will wake up later this afternoon still halfway under the groggy fog of anesthesia, move my left arm and leg, report to the nurse about my latest gas passings, futilely beg to have my foley removed, say a few inappropriately amusing things, then select items from the most exquisite menu of clear liquids offered anywhere. It seems that after almost a month of Listening to Your Prayers, Having a Reason for Everything, and Working in Mysterious Ways, the Answerer of Prayers has gotten me squared away perfectly today. He's Got the Whole World In His Hands and probably needs to move on to other things.

So don't pray for me today.

Pray for all the little kids with cancer, who haven't yet lived 5 or 15 years, let alone 45, and are experiencing much more misery and pain, or enduring more difficult treatments for more serious conditions than what I am undergoing, with little to no understanding of why.

Then pray for all the healthy kids that they never have to experience any of these things. The Answerer of Prayers will have a little extra time to take care of that, if you don't pray for me today.

Pray for all the kids who got hurt in accidents with cars and guns and hammers and lawnmowers and swimming pools and knives yesterday who are in hospitals all over the country today in pain and barely clinging to life.

Then pray for the millions of otherwise happy, healthy kids that they don't have accidents like that tomorrow, or the next day, or ever. The Answerer of Prayers can give some additional attention to that, if you don't pray for me today.

Pray for all the kids who are being beaten, molested, or neglected and have nobody to protect them, or whose protectors have become their daily living nightmares.

Then pray for all the happy kids in good homes, that they don't fall victim to such abuse or become enticed by trusted adults who are predators in sheep's clothing. The Answerer of Prayers will have more time to keep them all safe, if you don't pray for me today.

If you nonetheless feel compelled to pray for me today, then instead please pray for Amy, Cameron, Justin, and Charlotte, that they will have the strength to endure whatever inevitability the Answerer of Prayers has planned for me. I prefer the extra good juju be set aside for them, "just in case," rather than spent on operating room distractions.

I have already been placed in Good Hands, so don't pray for me today.

-kpb 9/25/13

Going Bananas

I have not seen any patients since Sunday, August 25^th. Combination of neurological dysfunction, pharmacological alteration, and psychological fear…there have been some days that I have felt like I probably could go to the clinic, but the fact remains that my colleagues have my shifts covered and I have not seen any patients in almost a month. I don’t think I’ve ever gone that long without seeing a patient since graduating medical school. I miss it.

Since I had just started the transition to a more “8 to 5” administrative position as residency program director, I have been trying to at least go into my spiffy new office. While nervous about my ability to see patients, I figured any bonehead could sit at a desk answering emails, rubber stamping stuff, attending meetings, and moving the stapler from one side of the desk to the other. However I soon found that my malfunctioning acoustic processor and auditory filter could not handle the imaginary “Carol of the Bells”-ish clatter playing along with the constant chatter, questions, phones ringing, AC fan getting louder and LOUDER and LOUDER like an 18 WHEELER ENGINE IN MY HEAD.

I found myself becoming exhausted, disoriented, and frustrated earlier and earlier each day. I’m doing a little work from home but have not gone to the office at all for the past 2 days. Sublime silence in my Laz-E-Boy has indeed settled my mind as I contemplate surgery next week. But the clattering noises, metal mouth, and heavy tongue are readily summoned, especially when the kids arrive home from school each afternoon with their buckets full of chaos.

Early every Thursday morning Amy runs a charity food distribution give-away at a church just a few blocks from our house. I have never gone with her before, but decided I wanted to go help pass out the food today…you know, do something useful, helpful. When we pulled in, there were already hundreds of people waiting all around the parking lot perimeter. I overheard conversation that some had been there since 5:00am to stake out an early ticket number for the line. Many pushed rickety rusted shopping carts, but most clutched makeshift carriers such as those ubiquitous canvas Wal-Mart bags, milk crates, laundry baskets, or even trash cans.

I recognized some of the clientele as parents of kids I’d seen in the clinic. Most others were an assortment of people I was not at all surprised to see out there: Old guy with oxygen tank and walker, scrunch faced man in stocking cap muttering to himself and yelling at birds, toothless lady joyfully repeating “I got #2, I got #2, I got #2” to anybody that would listen (many were impressed or envious), young unshaven guy with homeless smell and strips of torn paper towels inexplicably wrapped around his shins and feet, old lady with thick glasses in her kelly green Sunday best including pillbox hat and corsage wandering around finger in the air non-stop praising-be. There were a few young families and a few fancier folks who were clearly providing their less fortunate neighbors with transportation to this weekly gathering. I was glad to be there and was very proud of Amy.

As the usual truck arrival time drew nearer, there was a growing excitement, anticipation, and rumbling. Wonder if they’ll have chicken today? Hope they have carrots! I got #2, I got #2, I got #2. Those potatoes last week were so good. Once the big rig arrived and the inventory assessed and unloaded, Amy put me in charge of passing out bananas on the shady side of the truck. Because there were tons of bananas this week, people would be able to have as many bananas as they wanted and wouldn’t fuss at me. I’ve got hundreds of bananas in front of me with dozens of boxes still on the truck, and I’m ready to pass them out. Bring it.

Clatter clatter clatter Carol of the Bells clatter chatter chatter why is there an 18 WHEELER ENGINE IN MY HEAD I got #2 I got #2 I got #2 BE QUIET BIRDS Bananas oooooh look at all those bananas how many bananas can we have AM Radio AM Radio AM Radio 1 banana #2 banana 3 banana 4 Do they have carrots today clatter clatter chatter chatter Carol of the Bells 18 WHEELER there really is an 18 WHEELER RIGHT NEXT TO ME DOESN”T ANYONE ELSE HEAR THAT those potatoes last week were so good IT'S SO LOUD BE QUIET BIRDS AM Radio I got #2 I got #2 I got #2 I GOT #2 I GOT #2

“Are you OK?” It’s Amy.

“No I can’t do this. I need to sit down.” Welling up with tears. Not helpful.

Back in the van, doors closed, AC running quietly, radio off, no bananas, no 18 wheeler, sublime silence settles my mind. I rested my head on the window and watched the reflection of the food line procession in the passenger side mirror, all the people with their shopping carts, grocery bags, milk crates, laundry baskets, trash cans. Amy is directing everybody: the volunteers, parents of my patients, old guy with oxygen tank and walker, scrunch faced man in stocking cap muttering to himself still yelling at the birds, homeless-smelling paper towel shin foot guy, kelly green Sunday best lady still praising-be, young families and fancier folks. It's all silent and very distant.

The lady who got #2 walked happily in my direction from the line, pulling her trash can now full of food, bunches of bananas balanced on top. Her reflection grew larger as she got nearer and I could see her joyful toothless smile. I noted the banal Toyota disclaimer with an unusually disconcerting neurological dysfunction, pharmacological alteration, and psychological fear:

Objects in mirror are closer than they appear.

-kpb 9/19/13

For Want of a Hammer

Because I was thought to be precociously smart, or perhaps smart-ass, I was tested for and sent to kindergarten at age 4. My birthday was in November. I was always the youngest and littlest kid in the class. When we lined up by height for school pictures I was always last in line.

Because I was young and little and smart I tended more towards science and math clubs than sports. I played baseball almost every summer from age 5 onwards but was terrible. My dad came to every game to watch me play right field and/or sit the bench.

Because I was smart and tended more towards science and math, I was enrolled in the Gifted and Talented program starting in 7th grade, which meant I went to Center Jr High across town instead of Albion like everyone else in my neighborhood. The special-ed kids also went to Center and we rode the same bus. Sometimes I would laugh at them or with them, but more often I sat and tried to talk to them or help them understand stuff.

Because I was enrolled in the Gifted and Talented program at Center Jr High I was among the first group of kids in Strongsville in 1979 to take a computer class. There was one Tandy TRS-80 and one Apple II in Mr. Daugherty's classroom. 

Because the Apple II had an intrinsic elegance that the TRS-80 did not possess, I did all my 7th grade computer work on the Apple II. Most of the other kids used the TRS-80. Both of them required writing programs in BASIC.

Because my Gifted and Talented trajectory carried me through to AP classes and science and math clubs in high school, I went on a field trip in 10th grade to Case Western Reserve University where we visited the Biomedical Engineering Department and saw scientists creating artificial vision and bionic arms.

Because I was smart and good at math and science and had seen the amazing things the scientists at Case Western Reserve University were doing in the Biomedical Engineering Department, I decided I was going to Case Western Reserve University to become a biomedical engineer.

Because we had a neighbor that lived behind us that did not know us very well but knew that I rode the short bus to school, she once told my mom how impressed she was to hear that I had been admitted to Case Western Reserve University to become a biomedical engineer. My mom simply said "Yes we're very proud of him."

Because I went to Case Western Reserve University to become a biomedical engineer I was assigned to a room in a suite in Glaser dormitory with 5 other guys who also wanted to become engineers. That first year my suitemates were Mike, Matt, Vern, Clark, and Lee. Because I had a serious girlfriend that first year, I didn't get to know these guys as well as I should have until the next year.

Because these guys wanted to become engineers they were also smart and good at math and science and also so clever and hilarious that I laugh even now thinking of some the things we did. Matt had an original Apple Macintosh 128K and used to get up early in the morning to do nothing but rearrange the file and folder icons around on the desktop. Because I appreciated the intrinsic elegance of the Apple Macintosh 128K, I used sit on Matt's bed and watch him do this. Sometimes he would open a file in MacPaint which was a 2-bit pixelated picture of a nude Japanese woman.

Because two of my suitemates were named Clark and Lee, and they were amusingly foreign, we would insert their names into songs which included the words "you and me," such as "It's only Clark and Lee and they just disagree" or "Say Clark, say Lee, say it together, that's the way it should be." Needless to say I still do this today and it makes me at least smirk, but often LOL.

Because I was smart and good at math and science, I performed very well academically in the first two years of prerequisite courses necessary to become a biomedical engineer at Case Western Reserve University, I was able to start taking biomedical engineering courses and was also required to select a humanities track at the beginning of my junior year. 

Because I was required to select a humanities track at the beginning of my junior year, and the director of the medical anthropology track had the amazingly cool name of Atwood Gaines, I chose to enroll in the medical anthropology track to fulfill my humanities obligation at Case Western Reserve University while becoming a biomedical engineer.

Because I found the introductory biomedical engineering courses at the beginning of my junior year so painfully dry, boring, and far removed from the artificial vision and bionic arms I had seen on my field trip to Case Western Reserve University as a sophomore in AP science classes when I was in 10th grade, and the world of medical anthropology that Atwood Gaines introduced was so rich, fascinating, and vibrant, I changed my major to medical anthropology.

Because Case Western Reserve University was not, as its name might imply, a military school, but rather a result of the 1967 merger of Case Institute of Technology and Western Reserve College, changing majors from engineering to anthropology was not at all a problem. This resulted in my changing from a "Casie" to a "Reservie" and experiencing some harsh razzing from nerds.

Because I changed from a "Casie" to a "Reservie" and changed my major to medical anthropology, I took an actual 9-week college course called "The Anthropology of Rock and Roll." This course existed solely so that Atwood Gaines could noodle on his guitar and explain in detail over a 9-week period how he believed Eric Clapton single-handedly transformed the blues to rock and roll. Tom Petty was not mentioned a single time in this course, much to the dismay of my friend Dave Sfeir. I received a grade of "C" in "The Anthropology of Rock and Roll." 

Because I had been dumped by my girlfriend, who incidentally was the winner of the Miss Korea Chicago Pageant 1986, and I am not making that up, I spent a large part of my sophomore and junior years making great friends with my dormies and "finding my path" via changing majors, taking courses such as "The Anthropology of Rock and Roll," drinking alcohol, being obsessed with One Life to Live, and endlessly watching a grainy VHS tape containing bootlegged copies of Sixteen Candles, Ferris Bueller, and Rebel Without a Cause.

Because I spent a large part of my sophomore and junior years "finding my path" via changing majors, taking courses such as "The Anthropology of Rock and Roll," drinking alcohol, being obsessed with One Life to Live, and endlessly watching a grainy VHS tape containing bootlegged copies of Sixteen Candles, Ferris Bueller, and Rebel Without a Cause, my GPA was suffering.

Because my GPA was suffering and I was about to graduate with a BA in anthropology, I realized I needed to stay in school.

Because I realized I needed to stay in school and I was a good writer, I was able to create a beautiful and compelling essay describing how my GPA suffered during my junior year due to the life-altering realization that engineering was not in fact my destiny, but that in fact I was meant to be a doctor who would approach patients with an intrinsic empathy, humanity, and understanding of their unique personal and cultural perspective, which would in fact contribute to their healing.

Because Case Western Reserve University had a very progressive patient-centric School of Medicine with a unique curriculum based on the concept that doctors should approach patients with an intrinsic empathy, humanity, and understanding of their unique personal and cultural perspective, which would in fact contribute to their healing, I was accepted to attend Medical School at Case Western Reserve University.

Because I was accepted to attend Medical School at Case Western Reserve University, my grandmother sent me money to buy a computer of my own, and I found a used Macintosh 512K for $1000. Because I appreciated the intrinsic elegance of the Macintosh I would get up early in the morning to do nothing but rearrange the file and folder icons around on the desktop. 

Because it would not fit onto a single 3.5" floppy disk, I did not have the MacPaint picture of the nude Japanese woman. Now that I've Googled her up I see she isn't as nude as I remember.

Because I attended Medical School at Case Western Reserve University I learned that it was actually true and critically important that doctors should approach patients with an intrinsic empathy, humanity, and understanding of their unique personal and cultural perspective, which would in fact contribute to their healing.

Because my first clinical rotation in third year at Case Western Reserve University School of Medicine was Pediatrics, and I was very nervous about having any sort of credibility taking care of older children with serious illnesses, I chose to do my inpatient month on the NICU step-down floor at Rainbow Babies and Children's Hospital.

Because I chose to do my inpatient month on the NICU step-down floor at Rainbow Babies and Children's Hospital during my Pediatrics rotation at the start of my third year at Case Western Reserve University School of Medicine, I worked with a first year neonatology fellow named Dr. Brenda Hook who always talked about how they did things in Galveston, where she had done her pediatrics residency. I had never heard of Galveston before I met Dr. Brenda Hook.

Because you cannot avoid things indefinitely at Case Western Reserve University School of Medicine, I was eventually required to do pediatrics rotations with older children as well as all the other rotations in all the other specialties, and found that I did have a special knack and love for Pediatrics. And the kids actually seemed to find credibility in my Doogie Howserness. Sometimes I would laugh at them or with them, but more often I sat and tried to talk to them or help them understand stuff.

Because I came to have a special knack and love for Pediatrics, I did several more electives and an acting internship in various pediatric specialties. Throughout my 4th year I saw lots of different kids on lots of different inpatient and specialty service rotations including one 8 year-old boy named Michael.

Because Michael had recurrent prolonged fevers, joint pains, swollen lymph nodes, he was being seen in rheumatology clinic when I was on that elective. Because I was the student who did the original full history and physical in clinic and discovered through the workup that he actually had lymphoma, and because I had learned by attending Medical School at Case Western Reserve University that it was actually true and critically important that doctors should approach patients with an intrinsic empathy, humanity, and understanding of their unique personal and cultural perspective, which would in fact contribute to their healing, and because I had credibility with this older child with a serious illness, my team trusted me to lead the conversation where this diagnosis was revealed to Michael and his family. Michael's mother was on hospice care for terminal cancer.

Because Michael was in the hospital a lot the following month when I did my acting internship on the heme-onc service, I played a lot of games and did a lot of puzzles with him, and often slept on a cot in his room at night instead of the call room because his mother was on hospice care for terminal cancer and could not be there.

Because I saw Michael all the way through from his diagnosis to his mother's death to his final chemo party, I decided I wanted to be a pediatric oncologist.

Because I wanted to be a pediatric oncologist I determined it essential that I find a smaller pediatric residency program that would give me a solid foundation in general pediatrics before I went on to fellowship training. 

Because I wanted to find a smaller pediatric residency program that would give me a solid foundation in general pediatrics before I went on to fellowship training, I requested application information from the Pediatric Residency Training Program at The University of Texas Medical Branch in Galveston, Texas.

Because I had heard Dr. Brenda Hook talk many times about how they did things in Galveston during my inpatient month on the NICU step-down floor at Rainbow Babies and Children's Hospital during my Pediatrics rotation at the start of my third year at Case Western Reserve University School of Medicine, I met with her and she assured me that the Pediatric Residency Training Program at The University of Texas Medical Branch in Galveston, Texas would suit my needs perfectly.

Because Dr. Brenda Hook assured me that the Pediatric Residency Training Program at The University of Texas Medical Branch in Galveston, Texas would suit my needs perfectly, I interviewed there and spent the day meeting amazing and wonderful people and spent the weekend falling in love with the little island city.

Because one of the amazing and wonderful people I met on my interview day, the Department Chair Dr. Pearay Ogra, had some sort of supernatural abilities, he said to me during my interview, "Well, pediatric oncology sounds like a nice idea, but you never know what will happen. You may come here, meet a nice Galveston girl, get married, have a few kids and decide to stay and have a career here in pediatrics."

Because it was 1993 I called my mother from a pay phone near the beach and said "This is going to be the place."

Because this was going to be the place, I ranked The University of Texas Medical Branch at Galveston, Texas #1 on my list. I was thrilled when I opened my envelope on Match Day and discovered that The University of Texas Medical Branch at Galveston, Texas was indeed going to be the smaller pediatric residency program that was going to give me a solid foundation in general pediatrics.

Because it was a smaller pediatric residency program that was going to give me a solid foundation in general pediatrics, within the first few months of residency at The University of Texas Medical Branch at Galveston I met even more amazing and wonderful people, many of whom I am lucky enough to still count among my dearest friends, trusted colleagues, and sage mentors some 20 years later.

Because not everyone can be a dear friend or trusted colleague, one of my fellow interns in the Pediatric Residency Program at The University of Texas Medical Branch at Galveston was often unreliable and frequently called in sick. I had to cover her call for the inpatient service on December 9, 1993.

Because I was covering call for the inpatient service on December 9, 1993, I was summoned to the ER to evaluate a patient for admission and saw perhaps the most beautiful girl I had ever seen working as a tech. She had standard-issue blue scrubs on yet somehow she was literally glowing. Despite my Doogie Howserness and being nervous about having any sort of credibility with approaching such an amazingly beautiful girl, I rolled my chair right up next to her and struck up a conversation.

Because she was a nice Galveston girl she talked to me and said she was a GEMS Paramedic working overtime in the ER to make some extra money to buy a house of her own. She wrote her phone number, mom's phone number, work number, and pager number on the back of a prescription and told me I should come for a ride-along on the ambulance with her some time. As I walked back up to the inpatient floor with my upper level resident Rima Chamsedine, I said "I am going to marry her."

Because I married her, we had a few kids and I decided to stay and have a career here in pediatrics. 

Because I decided to stay and have a career here in pediatrics, I have taken care of thousands of children with an intrinsic empathy, humanity, and understanding of their unique personal and cultural perspective, which I hope has in fact contributed to their healing.

Because I decided to stay and have a career here in Pediatrics, my first job out of residency was in the newly opened Pediatric ER at The University of Texas Medical Branch at Galveston. I came to know the pediatric residents very well through working with them on 12-hour long night shifts, where you can really get to know somebody. Sometimes I would laugh at them or with them, but more often I sat and tried to talk to them or help them understand stuff such as doctors should approach patients with an intrinsic empathy, humanity, and understanding of their unique personal and cultural perspective, which would in fact contribute to their healing

Because I worked in the Pediatric ER at The University of Texas Medical Branch at Galveston I worked side-by-side with Dr. Russell Miller who taught me more about medicine and life than anybody I have ever known. He had the uncanny ability to clearly frame any issue, any issue at all, into 3 simple bullet points. I wish I had somehow offered the same to him when he needed it, and even more selfishly wish he was here now to help me clearly frame my current issue.

Because I had credibility with the residents and knew them well, had an intrinsically elegant PowerBook, was the only person in the late 90s who knew how to use Powerpoint and Photoshop, and was a smart-ass, I became the de facto creator of the annual "Resident Roast" to be presented at their graduation from the Pediatric Residency Program at The University of Texas Medical Branch at Galveston each year.

Because I presented the annual "Resident Roast" each year, the Camp Director of the Rainbow Connection, who happened to also be the Child Life Specialist at the Children's Hospital at the University of Texas Medical Branch at Galveston, and the Assistant Camp Director of the Rainbow Connection, who happened to also be the Residency Program Coordinator for the Pediatric Residency Program at The University of Texas Medical Branch at Galveston, approached me about creating a 20th anniversary slide show to be presented at The Rainbow Connection Camp for Children with Cancer and Blood Disorders in the summer of 2003.

Because I created the 20th anniversary slide show which was presented at The Rainbow Connection Camp for Children with Cancer and Blood Disorders, and I still had a special interest in children's oncology because of patients like Michael who I saw all the way through from his diagnosis to his mother's death to his final chemo party, my whole family came to the Rainbow Connection 20th Anniversary party that year.

Because my whole family came to the 20th Anniversary party at The Rainbow Connection Camp for Children with Cancer and Blood Disorders, I joined the board of directors and became the camp physician and medical director for this organization and have attended camp along with my kids ever summer since.

Because I am the camp physician for The Rainbow Connection Camp for Children with Cancer and Blood Disorders I have become a part of a family of very special people. I have seen kids fight against, win against, and lose against cancer, but each with amazing courage, joy, and grace.

Because I have seen kids fight against, win against, and lose against cancer, but each with amazing courage, joy, and grace, I am determined to do the same myself. 

Because I still have credibility with the residents in the Pediatric Residency Program at The University of Texas Medical Branch at Galveston, sometimes laugh at them or with them, but more often sit and try to talk to them or help them understand stuff, I became the Program Director for the Pediatric Residency Program at The University of Texas Medical Branch at Galveston just a couple months ago. 

Because I see them every day and try to have an open-door policy as much as possible, even through the last few difficult weeks, the residents feel comfortable to laugh at me or with me, but more often sit and try to talk to me or help me understand stuff. This week one of the residents came to my office to tell me that the expression I was trying to use in morning report was not "For want of a hammer," but actually "For want of a nail."

Now I will make like a tree, and get out of here.

-kpb 9/13/13

11

Earliest thing I can remember is around age 3, being taken to the ER to have the wheel of a cereal-box toy car extracted from my nose.

When I was 4 I hit a kid at preschool on the head with a hammer. Happened to be on the same day my mom was there watching through a one-way mirror.

First day of kindergarten I was gaming with Cory Hoover over who got to sit on the floor next to Debbie Coia. Can't remember the teacher's name any more. Debbie Coia was super cute and I was the only boy invited to her birthday party. Up yours, Hoover.

Somewhere around that time I remember building a pretty tall snow-bear with my dad and also washing our yellow Torino with him in the parking lot of our apartment at Indian Valley. Or maybe I just remember seeing pictures of that.

I won first prize in a Halloween costume contest for my dice costume made from a cardboard box. It was really clever. I won $15.

Moved to 2113 Grovewood Avenue in Parma when I was 5. Lisa Kollar stood in front of our house waiting to meet the new kids. We walked to school about 6 blocks away all by ourselves. Our phone number was 749-2645. We had a party line.

New 1st grade teacher in Parma was Mrs. Sefkovic. She was tall and very pretty. She chastised Denine Tarzanek for dotting her i's with hearts.

My mom made dinner every night. Sometimes we went out to eat at Ponderosa. Once they were short on silverware and we shared steak knives with the people at the table next to us. They had this really good salad dressing that was kind of like Catalina.

Somehow my mom got stuck being the coach of my t-ball team the Lions. We lost every game. She was very pregnant that summer.

My dad used to shoot baskets in our driveway. My sister and I would argue over who would be "the getter," fetching the ball when it took a bad rebound. Sometimes this included being lifted over the neighbor's chain link fence and carefully avoiding the land mines left by their Irish Setter, Blaze.

In 3rd grade I wrote a semi-regular newspaper called "The Ivington Press" with my neighbor and classmate, Kelly Jester. We wrote a special edition called "The Arlington Press" for the bicentennial.

We always got to watch "Happy Days" and "Laverne and Shirley" on Tuesday nights, but weren't allowed to watch "Three's Company."

My best friend was Ronnie Zeitz. We took swimming lessons together and once hid in a locker to avoid going to the lesson because the instructors were mean and shoved our faces in the water. His parents were divorced, which I didn't really understand.

My dad worked for "CNA" and was an underwriter, which I didn't really understand.

Sometimes our whole family would play Yahtzee together. My sister would talk into the cup to "Charlie" hoping he would give her a good roll. My dad would always tell us you shouldn't try for ones, you should leave the ones open, and take a 0 or a 1 there when you got an otherwise bad roll. Charlotte talks to "Charlie" now and I tell her the same thing about the ones.

My mom used to play cards with me. I liked gin rummy, she preferred crazy 8's.

My dad played catch with me in a very tiny back yard crowded with trees and a swing set. I probably missed 75% of the balls he threw to me.

In 1977 we went to Bradenton, Florida and stayed in the most stereotypical 70's condo you can imagine. We had a red dune buggy for the week. My favorite song was "Undercover Angel." My dad liked "Lido Shuffle."

One time on a Sunday morning when we had all crawled into my parents' bed, my dad suddenly got up and sang Queen's Bohemian Rhapsody refrain, "Goodbye, everybody, I've got to go..." and then proceeded to the bathroom. That was probably the funniest thing I had ever seen up to that point in my life.

We moved to Strongsville just before I turned 11. Chapman was an "open school" with no walls which was very progressive at the time. The first day I was put at a table with Jodi Jirik and Billy Fiori, who became my new best friend. There was another girl at the table I don't remember.

We had a black Ford LTD and most of the time didn't wear any seat belts.

Every day at dinner we asked my dad, "Whadja have for lunch?" Sometimes when our giggle boxes got turned on he'd threaten us with eating dinner in the basement. We never ended up eating dinner in the basement.

Both my parents were there every single day of the first 11 years of my life. My dad went to work, we went to school, my mom made dinner, we hung out and went to bed. We had a normal, sometimes boring, but always safe and stable home environment. They didn't do anything or try to do anything super extraordinary; they loved us, took care of us, and it was all just very regular. 

I can remember lots of times through middle school, high school, and beyond much more vividly, where they were present as my supportive parents and later as grandparents. I've been lucky to have both of them alive, healthy, and married now going on 45 years. When I see them now there is an implicit continuity; I know these are the people that raised me through early childhood and on into the adolescence and adulthood in which I can fondly and fully recall their presence.

Thing is up until 11 I honestly don't remember them very much.

-kpb 9/7/13

A Tale of Two Tumors

Here's what I thought about as Amy drove us to MDA for a 7:30am appointment today...

"Are you sure this is nothing serious? I mean, I knew he would be slow on some things but isn't it abnormal to be getting worse at some milestones?"

"I'm sure it's nothing. This is more than likely just the two steps forward one step back of having a special kid like this. There will be times when your heart breaks because he can't do the simplest things, then other times when you'll cry tears of joy because he surprises you with amazing success at something you thought he'd never do."

I was especially proud of that last little Bly-ism of encouragement, perfectly timed with a hand gently placed on the shoulder. From the moment I saw this teary-eyed shaky-voiced mom arrive to the registration desk just before closing time one Sunday night in September 2012 with her giggling happy little boy, I knew my main job was going to be confident reassurance, whatever she was bringing him in for. Of course she was extra nervous, what with a vulnerable Down Syndrome child, but urgent care late on a Sunday was surely not the place to get months of "unsteady wobbly walking" addressed, especially when that symptom was not even demonstrable during the visit. Referral to Special Services and we close up shop for the night.

Well this mom was not reassured. I had listened to her words but not to her teary eyes and shaky voice. She knew something was wrong. She knew her child's incoordination was not just a tick-box in what to expect from a child with Down Syndrome. She took him back to another clinic 2 days later. He was subsequently admitted to the hospital for workup of his ataxia. He was discovered to have an inoperable pontine glioma. Now I see his forever smiling 4 year-old face every time I go to clinic, as the picture from his memorial service last May hangs on the bulletin board in our staff room.

It would not have made a bit of difference to his ultimate outcome had I sent him into the hospital 2 days sooner. But it may have made a world of difference to his mom...to have seen a doctor that Sunday night who listened a little more closely, took the problem a little more seriously, and did not simply provide a trite Hallmark card moment and an escort to the exit. I know that at least a small part of her will always wonder...could that 2 days have made a difference?

Here's what I thought about as Amy drove us home to Galveston from MDA today...
I was fortunate enough to be completely asymptomatic while my glioma grew for months or even years. I was fortunate enough to have a seizure in front of 60 medical students and a half-dozen faculty, a clearly demonstrable and undeniable symptom. I was fortunate enough to have a wife who knew something was wrong and didn't let me drive. I was fortunate enough to have her cool head arrive on the scene simultaneous with 2 paramedics I've known for 20 years. I was fortunate enough to have my very best friends and most talented colleagues already waiting in the ER upon my arrival to expedite my workup. I was fortunate enough to have doctors caring for me in the hospital who would not have dismissed hearing music in my head as "nothing." I was fortunate enough to have a readily identifiable tumor located in a place that is easily accessible to surgery, with very little surrounding area of critical brain function.

I was fortunate enough to have a network of former and current students, residents, colleagues, and friends making calls and sending emails to get me appointments with specialists both here and at MDA within days that would have otherwise taken weeks. I was fortunate enough to meet with a neurosurgeon at MDA who only operates on gliomas, and was candid and respectful enough to tell me that the surgeon at UTMB is excellent and could perform my surgery very well. I was fortunate enough that he reiterated that he only operates on gliomas. I was fortunate enough to have a much trusted and valued friend, who now knows oncology better than I ever will, bluntly instruct me in a way that only she can, that the best predictor of long term remission in my condition is the effectiveness of the initial surgical resection.

Here's what I'll be thinking about when I go under the knife at MDA in a few weeks...

-kpb 9/3/13

Epilogue: The very construction and sharing of this story compelled me to contact this Mom, something I had needed to do but avoided for a year...to say how sorry I was for what happened to her child and how I had failed him...and to get her blessing to share this experience publicly. We talked for quite some time and she was amazingly gracious; despite her unmeasurable pain she actually comforted me and provided a bit of closure.

Here is an amazing thing she said to me: "Dr Bly, you have nothing to feel guilty about...you gave me two more days at home with him before everything changed forever." Profoundly humbled.