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When there is no Known Cause or Cure: Nephrotic Syndrome

You really never know what life has in store for you…until there it is – in store for you. One fall day, three years ago, Tucker and Andi Callaway found out just that. Their first child, Wilson, woke up for kindergarten like any other Monday. But that day his eyes were just a slight bit puffy. Andi, Wilson’s Mom, didn’t think much of it, but she kept him home from school. As the day went on, he seemed fine, and the next day, despite puffy eyes again, no other symptoms.

Thinking it might be an allergy, Andi changed the sheets, switched detergents and rewashed. But after a couple of days went by, she knew there was something wrong. Still, even a visit to the on-call doctor didn’t leave Andi or her husband Tucker with answers, or with any cause for concern.

Despite knowing something was brewing, Sunday the family enjoyed a trip to the Lawrence Hall of Science and stopped off for a special occasion lunch of a burger and fries. “By the end of the day that Sunday, his legs were swollen and as big as mine,” says Tucker, Wilson’s father. “They were like liquid deformities on his body. We of course rushed him to the emergency room.”

“It was crazy,” says Wilson, who is now a third grader at Green Valley Elementary. “I felt like I had all this extra fluid and my face was really swollen and stuff.”

Andi remembers thinking when they told them it was Nephrotic Syndrome, something she and Tucker had never heard of before, that it didn’t seem that bad. “It seemed like a good outcome, considering all the bad things so many kids are faced with. It wasn’t until the weeks and months went by that we really knew what was in store for us,” says Andi.

As it turns out, Nephrotic Syndrome is, unfortunately, bad. It is a chronic disease that has no known cause and no cure. It is not genetic and no two cases are the same. It affects boys more than girls, and each year 2,400 children are diagnosed with it. Adults can be affected too. What is known is that Nephrotic Syndrome is a serious non-contagious autoimmune condition that prevents the kidneys from properly filtering blood. In normal function, the body responds to an immune system trigger like a cold, virus or bug bite, and then shuts off when the trigger has passed. In Nephrotic Syndrome, the immune system attacks the trigger, but then turns and attacks the kidneys causing them to become inflamed. As a result, the kidneys can’t keep the right balance of protein and liquid inside the bloodstream, so liquid seeps out from the bloodstream and into the tissues around it.

“It’s a mystery—we don’t really know what causes it,” says Dr. Paul Brakeman, Assistant Professor of Pediatrics and Pediatric Kidney Specialist, UCSF Children’s Hospital and Wilson’s Nephrologist. “We have medicines we can use to suppress the immune system, not to cure it, but suppress it and put people into remission. But we don’t really have medicines that get to the exact heart of what causes it, because we don’t know what the cause is.”

That is the challenge in Nephrotic Syndrome. There is no standard protocol for treating these cases because there is no standard case. Initially, Nephrotic Syndrome is treated with high doses of prednisone for three months and a hope that the kidneys respond and the patient goes into remission. If all goes well, they will remain in remission after the three months of treatment is complete.

In the attempt to treat Wilson, doctors prescribed a daily dose of 60 mgs of Prednisone. If you have taken even 5 mgs of prednisone, you can imagine what a toll 60 mgs will take on a six-year-old child. Prednisone is a miracle drug; but it comes with a price. It is extremely toxic to the body and has severe effects on behavior. “There would be days when Wilson would throw a temper tantrum for hours—literally hours,” says Andi. “Life was totally unpredictable, and while we were grateful for the medicine that put Wilson into remission, our whole family bore the burden of that treatment.”

And then came the rest. The next six months brought one relapse after another. “We had finally pulled our family together after his diagnosis and we thought ‘okay, we’ve got this.’ We can handle Nephrotic Syndrome.’ And then Wilson relapsed before completing his first course of prednisone,” says Andi. So they started again. Another three months of prednisone. “But just when we finally regained our sense of hope, Wilson relapsed again,” explains Andi.

What do doctors do when the initial treatment isn’t working? They prescribe second line medications—medications that are designed to spare the body the toxic effects of long term steroid use. In Wilson’s case, they combined the Prednisone with Tacrolimus, an immune-supressive drug used mainly after organ transplant to lower the risk of organ rejection, with a side effect linked to cancer. In fact, the cancer risk is considered high enough that in a hospital setting, the administering person must wear gloves when giving the dose. But that combination also failed as Wilson relapsed twice while taking those two drugs. The doctors finally added Cellcept, another immunosuppressant medicine similar to Tacrolimus with another set of potential side effects including asthma, respiratory tract infections, anxiety and again, cancer.

At that point, six months post diagnosis, Wilson was taking full doses of Prednisone, Tacrolimus and Cellcept, three stand alone courses of medication used to treat Nephrotic Syndrome. Luckily, adding the Cellcept did the trick. The combination of all three medications working together put Wilson into remission, where he has been for more than two years now.

“We were so relieved to finally identify the right cocktail of medications that worked for Wilson, that are enabling his kidneys to keep working and allowing him to lead a normal lifestyle,” says Andi. “What’s been tough for us this year has been managing the side effects of that. It’s a daily challenge to keep him from getting sick from the common cold to the flu, so that he can stay in remission.” For the past two years, each year Wilson has missed more than 50 days of school. In 2014, Wilson caught a cold the third day of school and couldn’t fight it. It led to a year long infection that would not respond to antibiotics despite how strong. Finally, Wilson underwent four hours of sinus surgery at UCSF to remove the infection.

“One of the burdens families bear, is that for a condition that relapses when a child gets sick, it is very hard to deal with trying to prevent children for children getting sick, because it’s actually quite normal for a child to get sick,” adds Dr. Brakeman. “An average child has 3-5 viral infections a year.”

If anyone in the Callaway family is sick, they have to quarantine both kids. If their seven-year-old daughter Lila has a cold, she has to go into her room and can’t be in the common areas. If anyone in the family has the flu or strep throat, Andi sends them to stay with extended family like her husband’s parents. The consequences of Wilson contracting one of these illnesses and triggering a relapse is too high.

Nephrotic Syndrome impacts the entire family because beyond keeping Wilson healthy and on top of all his daily medications, there is the emotional side as well. Tucker and Andi take special care to make sure their daughter Lila feels loved as there is so much attention put on Wilson.

The Callaways do their best to make both kids feel normal, despite the dietary changes (Wilson’s entire diet is now gluten and dairy free) and the constant hand washing both kids must do. Andi and Tucker have spent a great deal of time educating their school community on Nephrotic Syndrome through outreach and classroom talks. As a result, her kids’ teachers now encourage all of their classmates to clean hands before every snack and before coming in from recess.

Andi doesn’t do carpools the same way as other people, and their kids don’t take the bus anymore to school. They used to, but it’s something they can’t entertain now – it’s just too much exposure to risk. And when it comes to play dates, they’ll only entertain them with kids whose entire family is healthy. If say the child’s sister or Dad is sick, that friend could be carrying something and be unaware, and since viruses typically run through an entire family the risk is there.

This is challenging stuff for a kid like Wilson who loves to hang out with his buddies, doing normal nine-year-old boy things that come along with just being a kid.

“Wilson’s a great kid,” adds Tucker. “He’s always been what we refer to as an old soul. He’s always been a very thoughtful, considerate kid with a great sense of humor. He’s passionate about science, chess, rocks, reading. But his friends and sister Lila top the list.”

Andi and Tucker briefly considered homeschool for Wilson, to have more control of his health. And while they support those that do decide to homeschool, it’s not what they wanted for their family. The tradeoff? Constant planning and strategizing for Wilson’s day before he leaves the house on how to keep him–and his sister–healthy. “Wilson’s condition is on my mind 100 percent of the time, 24 hours a day, every day,” says Andi.

The doctors have told the Callaways they believe Wilson will be a healthy adult. They believe he will grow out of this, and at some point in his life, he will not need to take medication anymore. That is based on the diagnosis of Minimal Change Disease, a category of kidney diseases within Nephrotic Syndrome. “We hang on to that every day,” notes Andi. “It is our hope that eventually Wilson will be a happy, healthy adult. And we try to make every decision, with that in mind.”

Tucker says the most amazing thing he’s seen through all of this is the power of a mother’s love for her child. “I don’t think there’s any stronger force in the world. It’s just inspiring.”

Since Wilson’s diagnosis, Andi and her family have dedicated themselves to changing the story for Wilson and all kids with Nephrotic Syndrome. Supported by their Danville community, close friends and family, they have joined forces with Kara Jones and Jen MacGougan, two other Bay Area moms with the same passion to deliver a cure. Together, these women have been instrumental in raising awareness and funds for the fight in the Bay Area.

On May 21st, Nephcure Kidney International is bringing its annual fundraiser, the Bay Area Nephcure Walk, to our own backyard in Danville. Historically, the Walk has been in San Jose, but after the incredible support from our Danville community last year, this year it will take place at Oak Hill Park in Danville. For more details on the Walk go to http://give.nephcure.org/BayArea.

Last year, the Bay Area NephCure Walk raised more than $100,000, a record setting number almost tripling the year before. As a result, NephCure has announced and begun plans for a dedicated NephCure Accelerating Cures Institute locally at Stanford.

This year, Andi and Tucker have an even bigger vision for this fight and hope to help the Walk top last year and raise $120,000. If you would like to donate to Team Callaway and help support their goal of raising $40,000, you can do so here at http://give.nephcure.org/BayArea/walkforwilson. Donations made to Team Callaway and / or to NephCure go directly toward finding a cure for Nephrotic Syndrome, development of the Bay Area NACI site, and to pay for programming and support for children and families in our local community who have Nephrotic Syndrome. To see other families’ stories, you can visit the Nephcure site here:  nephcure.org/connect/patient-stories/.

Want to know more or help? Contact Andi at andicallaway@gmail.com.

NephCure Kidney International is a registered non-profit 501(c)3 and is the only organization dedicated to seeking the cause of Nephrotic Syndrome, improving treatment options and searching for a cure.

 

 

 

 

 

The Onset of Spring Fever

My family and I have recently been showing signs of an illness that is every bit as frightening as the Zika virus. Apparently, we’re not the only family in the area afflicted with an atmospherically transmitted disease (ATD not to be confused with a STD), and it has the potential to turn into an outbreak that has The Center for Disease Control (CDC) on high alert. My exhaustive research (I made it up) indicates this current strain will probably last until school gets out for the summer in June. Symptoms include: lack of concentration, hyperactivity, sleep aversion, claustrophobia and the giggles. If you haven’t guessed it already, the Copelands have been diagnosed with a severe case of Spring Fever. So far, the only known antidote is fresh air, loud music, a 7-Eleven Slurpee and fun.

After four drought-plagued years, we now have water in our reservoirs, snow pack in our mountains and flowers in our gardens. I’m secure enough in my masculinity to admit that I like flowers. Tulips are my favorite if you must know. Anyone remotely familiar with Spring Fever knows that flowers often have a soothing/calming effect on the worst of cases. Exhaustive research (made it up again) has confirmed that flowers can subliminally increase human energy levels and supplement lacking pep and vigor. Apparently, exposure to annuals, perennials and blooming blossoms (not the Outback Steakhouse kind) can increase vitality, hope, optimism and a positive outlook, and provide a “spring in our step,” if you will; that is, unless of course you have allergies or hay fever, in which case you’re probably a flower hater. Don’t be a hater!

In my professional opinion, flowers add vibrant color and a delightful visual contrast to our suburban landscape that last year consisted of dirt, dog poop, weeds and artificial lawn. Yes, I have been known to exaggerate a bit, but without the recent abundance of precipitation, our I-680 corridor could’ve taken on the desolate cinematic look of the Academy-award winning Mad Max Fury Road.

Look around—thanks to the weather we’ve had this spring our hills and valleys are spectacular. Keeping with a movie theme, there are areas of the Tri-Valley that would be the perfect set location for a charming little romantic comedy entitled Spring Fever starring the devilishly handsome Ryan Reynolds and irresistible Julianne Hough. I envision them strolling along Prospect Avenue in downtown Danville, holding hands and window-shopping before lunching at Sideboard or reading a copy of Alive magazine over a latte at Pascal’s. (Note to self: Begin drafting screen play. Soundtrack idea: The 1973 hit song by the Brady Bunch titled “It’s a Sunshine Day?” Anyone? Just me?Awkward.

More exhaustive research (again, made it up) says people between the ages of three and 74 years old prefer watching movies in 3-D Technicolor on an IMAX screen as opposed to viewing an 8 mm black and white silent film in a closet. Pastel colored flower beds, emerald green hills, blooming white cherry blossoms, cresting blue lakes and a bright orange sun in the sky is what inspired Crayola to come up with all those crayon colors.

More exhaustive research (really, you have to ask?) has confirmed that one effective medicinal treatment for Spring Fever is apparently sports viewing. Fortunately for the afflicted, spring begins with the conclusion of March Madness, the NCAA basketball tournament. College B-ball transitions into the start of the major league baseball season. As MLB picks up momentum, we slide into the NBA and Hockey playoffs. Granted, professional basketball and hockey playoffs both seem to extend well into the summer months, but they can still provide medicinal benefits when the virus reaches a climax. Add a sprinkling of golf, tennis and soccer; it’s all just a build up to my favorite spring sport medicine treatment, the NFL draft. The draft seems to bring my fever down better than two Advil and a picnic.

Spring has long been referred to as a prelude to summer—a summer tease. That’s right, exhaustive research (of course I made it up) states that most people feel that the breezy cloud-filled days of April and May are preparing us for, or a build up to, the warm days and star-filled nights of June, July and August. Flying kites, tending gardens and cleaning house are ideal ways to prep for family camp outs, company BBQs and neighborhood pool parties. Musically, spring is Kenny G and Christopher Cross where summer is more Def Leppard and Journey. Exhaustive research (I asked my daughters this time), says a more contemporary musical reference (something from the last decade) would be Taylor Swift, One Direction orAdele (Spring), and Fall Out Boy, Bruno Mars or Jason Aldean (Summer).

Spring Fever is rarely terminal although it can certainly feel like you’re dying a slow death if you’re stuck in a classroom or office building on a beautiful sun-filled weekday afternoon. Adults are just as susceptible to the fever as kids. I’ve personally known at least two co-workers who have spent time in “treatment facilities” as the result of over medicating the Spring Fever with margaritas and mojitos.

The secret to successfully dealing with the onset of the fever is to first recognize the fever’s five “R” triggers:

1) Realize when you just can’t stand to be indoors another second,

2)  Respect the call of the outdoors,

3) Respond to the calling,

4) Reward yourself with an abundance of outdoor living, and rinse and wipe. Wipe? Sorry, wrong illness.

5) Repeat step 4 over and over again until exhausted. A little bit of spring fever can actually make your weekends so much more enjoyable and rewarding.

My last bit of exhaustive research (common sense) says, Spring Fever may not be curable, but it is treatable.

“Choose a job you love and you will never work a day in your life!”

                                                                                                            Confucius      

I’ve spent 35 years as a teacher and never regretted, for one moment, making the decision to choose teaching for my life’s work. There is no other profession that provides the fulfillment and satisfaction like teaching young minds.

Teachers have one of the most important roles in our society.  They help mold and shape future citizens that eventually become industry leaders; government officials; medical experts; lawyers; artisans; entertainers and much more—too many to name.

“Being a teacher means teaching every child no matter what their needs; educating them to become life-long learners and contributors to society,” said Phyllis Falkenstein, Director of the Learning Center at Valley Christian Elementary School in Dublin.

To become a teacher one needs a bachelor’s degree in an academic subject.  It’s not unusual for teachers to minor in other subjects.  A teaching credential is usually required in most states.

When I was 17 years old and about to graduate from high school, I didn’t know what I wanted to do with my life. My first year of college I majored in Business Administration, thinking that I would eventually go into some form of business.

After one year in college I decided I wanted to be a high school band director, so I changed my major to Music Education. I graduated from the University of California, Berkeley with a bachelor’s degree, then I spent another year in graduate school at Cal earning my teaching credential. I knew it would be better making my life’s work something I would be happy doing; possibly changing student’s lives for the better, rather than making more money in the business world.

I got a teaching job right out of college and worked in the public school system for 12 years. I taught six years at Miramonte High School in Orinda as director of music; and six years as a counselor at Ygnacio Valley High School in Concord.  Then, I decided  I wanted to teach at the college level and work with students who wanted to be public school music teachers.

I knew I would have a better chance getting a college job if I had a doctorate degree. While teaching high school I earned a master’s degree in Music Education at San Francisco State University. Then I started a Ph.D. program at Cal, finishing five years later.

I sent out applications to various colleges and my first college job was at Sonoma State University. After six years I was hired at the University of California, Davis, as Director of Bands and Supervisor of Teacher Education in Music. This was my “Dream Job” where I spent the next 17 years before retiring.

Teachers Influence

Other than family members, teachers are some of the most influential people in our lives. We are exposed to teachers at a very young age, starting in pre-school and kindergarten and going on through 12th grade. The first few years in elementary school, the school day is shorter, then in middle school and high school students are under the influence of their teachers most of the day.

After high school, college professors can have a tremendous effect on our thinking and beliefs. We have all been influenced by someone, no matter what one’s station in life happens to be. Teachers play a most important role in influencing our thinking and understanding of the world around us.

I am sure I had good teachers during my elementary school years but as I look back on those years, no outstanding individual comes to mind.  It was not until I started high school that I realized that some of my teachers really had a great impact on my life.

One man, in particular, during my four years of high school, left an impression on me that would eventually lead to my life’s work as a high school teacher and university professor.

When I started high school I took beginning band using my father’s alto saxophone. I enjoyed this class tremendously so the next year I signed up for advanced band.  A new teacher came in to teach the music department classes.  This was the start of a lifelong friendship with my band director.

He inspired me so much, I became very active in the music department and eventually took on leadership responsibilities.  I was elected band secretary and in my senior year I was elected drum major, thereby becoming second in command to the director.

This teacher in my life, who had such an influence on me, other than my parents of course, was Richard C. Hansen of Acalanes High School in Lafayette.  He taught me how important teaching was. I wanted to experience what I saw in him.

After graduating from Cal I obtained my first job in the same district as Acalanes, then my mentor became my colleague; Mr. Hansen became my lifelong friend, Dick.

It was a privilege to make a living at something I really enjoyed doing.  Every day I looked forward to going to work. As Confucius said, “Choose a job you love, and you will never work a day in your life!” Unfortunately not too many people can say that. I would heartily recommend teaching as a profession for those inclined to work with students and help guide them in their learning.

Most men and women who teach our children are dedicated educators who historically are tragically underpaid, overworked and under-appreciated.  One enters the profession knowing that it is not a way to become rich.

I’d love to see legislation passed that would pay our teachers a salary level that would allow them to live comfortably, maybe even buy their own home.  Teaching is a noble profession and those that dedicate their lives to our young people and their futures should not have to take a second job to make ends meet.  Today many teachers are even asked to cover the costs of classroom supplies at their schools.

Teachers spend countless hours outside the classroom preparing lessons, grading papers, planning events and special learning projects for their students.  Teaching is truly one of the most important jobs there is and teachers should be compensated accordingly.

I am so glad I chose education as a lifelong career. It has been very satisfying and rewarding, working with students, watching them develop and flourish as competent and confident individuals.  I encourage anyone who wants a rewarding profession, one that will give you great satisfaction in life, to be a teacher.

Mark your calendar for “A Salute to John Williams,”  the Danville Community Band’s annual Free Spring Concert, Sunday, June 12, 2016 at 3 p.m., Community Presbyterian Church in Danville.  For information call 925-372-8420. Please submit your questions and comments to banddirector01@comcast.net

Visit our website at www.danvilleband.org for up-to-date information about the Danville Community Band.

 

Although we shared the same last name and many friends called us the “Cohen Brothers,” Lenny and I were not related. We enjoyed a close, warm friendship and shared many ideas and ideals, not the least of which ran something like “life is beautiful and new adventures lay just around every corner.”

In our thirties Lenny and I were big men, and both having a thirst for whatever life had to offer. Lenny was six feet two inches and weighed about 210 pounds. He had an almost childlike innocence about him with a shock of Huck Finn blond hair that denied his worldliness. He had been a frogman in the U. S. Navy and an alternate on the Olympic swim team. I was then about three inches shorter than he and five to ten pounds heavier with, as I described it, “a layer of fat to protect the muscles.” I was the runner and ball player; he the swimmer.

We never competed in the other’s territory. Neither of us cared much for alcohol, although we would have an occasional drink together, especially when we attended shows in Las Vegas. One cold evening we sat in a bar each nursing a cocktail while waiting for another friend to join us for dinner. At the time we both were involved with a national organization that had “Union” in its title, although it was a loose confederation of institutions that had nothing to do with labor unions.

One of us remarked that the “Union” had made a mistake doing something long since forgotten. The man next to me at the bar angrily shouted out, “What the hell is wrong with unions?” When he aggressively turned toward the two of us wearing topcoats and looking like hitmen, his facial expression said, “Oh, dear, I just committed suicide.” We assured him that we were both pro-labor and that our “union” was a different kind. Although he offered, we bought him a drink and the “confrontation” ended quietly.

At the time I lived in Hollywood trying to become rich and famous as an actor—neither worked out—while Lenny lived on the apartment side of Beverly Hills, as opposed to the mansion side. Our favorite restaurant was Cantor’s Deli on Fairfax and we met there at least once a week. When a party was seated at Cantor’s, the server, then called a “waitress,” would place a basket with a variety of breads and rolls on the table. When Lenny and I sat down, they would place one basket in front of each of us.

One evening while chatting with a friend named Jack, we informed him that we were going to get some pie for dessert, asking if he would like to join us. He thanked us, but said he would rather go home. As we started to leave, and without any signals, Lenny walked by Jack’s right side while I walked by the left side, both of simply lifted 5′ 8″ Jack simultaneously under his arms and the three of, Jack in the air, left the building with Jack saying, “Hey, guys, how about we go get a piece of pie for dessert?” We did.

Lenny was a magnificent story teller, so good that some of us wondered if the stories were authentic. Years later by accident I discovered that both his war stories and his romantic exploits were, indeed, factual.

In the 1960s I was youth director in Southern California for an umbrella organization, while Lenny was the youth director for one of the affiliates. I was just a tad skeptical when I received a phone call from him saying that he had gotten Jascha Heifitz to speak to his youth group on two conditions: no publicity and the only adults who would be there would be adults who might normally attend such a group—namely Lenny and I.

For those who do not know or who may have forgotten, Jascha Heifitz was unchallenged as the greatest classical violinist in the world during the mid-20^th Century. He was from the Russian school of music that emphasized three things: technique, technique, and technique. When Fritz Kreisler, another great violinist, heard Heifitz’s debut concert, he reportedly said about himself and other fiddlers, “We might as well take our fiddles and break them across our knees.” Although Heifitz was older than the “Cohen brothers,” he and I shared a birthday, February 2; he and Lenny died within a few months of each other in 1987. He is still considered one of, if not the greatest violinists of all time.

Heifitz at the time was teaching master classes in violin at U. C. L. A. A few weeks later, however, I received another call from Lenny: “Heifitz broke his leg and cannot appear.” Although the L. A. Times ran stories about the broken leg, I could not help wondering if this were a Lenny fantasy. Then, a few months later came the next call: “Heifitz will be at the youth group” on a specific date.

On a cold, rainy, windy March night, the maestro appeared with a violin case which held a Guarneri and a Stradivarius. The teenagers would have been vastly more impressed if a famous pop singer or guitarist appeared, but they had to settle for the best in the world. The youth group was composed of children from Beverly Hills—not the apartment side—and one youngster had the temerity to ask what the two violins were worth. Heifttz answered about $300,000. (In the early 21^st Century I heard that the Guarneri was worth about $2,000,000 and the Stradivarius about $4,000,000.)

After a demonstration of the difference in sound between the instruments and two short pieces played to perfection, of course, it was time to leave. Heifetz still used a cane, and to get to the exit, we had to cross a marbleized floor that was fine in dry weather, but our shoes were wet. In one of my many less than intelligent moments, I offered to carry the violins for the maestro. He handed me the case and thanked me. I started to cross the marbled floor when I had a vision that is as vivid today as it was some fifty years ago. I had become Curly, the fat, bald one of the Three Stooges, and was carrying a violin case when I slipped, did a 360 in mid-air, and landed on my derriere atop $300,000 worth of violins. I froze. Mr. Heifitz asked if I would rather he carried the instruments. I apologized, and he said he understood.

Occasionally today, I will see and hear Jascha Heifitz on the Arts Channel, on video, or on the radio. I think to myself, “I carried that instrument.” Then my now eighty-five year old face gets a warm, nostalgic grin and I think to myself, “Yeah, Cohen; for about fifteen feet!