Dr. Maurer and his patient: Their work lives on

Stephen Smith had Rhabdomyosarcoma when he was a kid. He re-connected with the doctor who helped save his life, and with Mrs. Maurer, at a University of Nebraska Foundation event earlier this year.

Stephen Smith, left, had rhabdomyosarcoma when he was a kid. He re-connected with the doctor who helped save his life, and with Mrs. Maurer, at a University of Nebraska Foundation event earlier this year.

In the past year or so, Stephen Smith has been thinking a lot about his old friend and former doctor, Harold M. Maurer, M.D.

They’re each about to enter new phases in their lives, Smith said. Dr. Maurer, of course, is wrapping up his tenure after 15 years as chancellor at UNMC.

Smith was one of those kids Dr. Maurer had helped cure of rhabdomyosarcoma, a then-incurable childhood cancer, many years ago: “I’ve been really blessed with an amazing life.”

But now, some 40 years later, all of that radiation is finally taking its toll. He’s had stomach problems, health problems. He’s exhausted. A teacher, he missed maybe half the school year last year.

It’s frustrating and it’s sad, but he isn’t bitter about it. It just is.

As the students asked him what’s wrong, he would give them a little, just enough: No, I don’t have cancer. I had cancer when I was a kid. I’m having some stomach problems. He told them bits and pieces, here and there.

At the end of the year, he gave them a project. Tell him what they had learned this year – maybe to make them realize they had learned something, even with their teacher having missed so many days.

“One kid, this kid I had heard maybe three words from all year long,” asked to do his presentation orally, privately, outside. Smith started to object, but the kid showed such uncharacteristic insistence the teacher couldn’t disagree.

The shy kid started laying out pieces, like a TV detective explaining how he’d cracked the case: So, you had cancer. Yes. Did you have this kind of treatment? Yes. And that kind of treatment? Yes.

You were part of a big study, between the years X and Y, the student said. Smith was stunned.

How could he possibly know that?

“I have a scar,” Smith said. The student lifted his shirt.

“He showed me the exact same scar.”

Then the quiet kid said this: “What I learned this year was that you helped save my life with that study you went through when you were a kid.”

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Stephen Smith was 12 when it happened. One of his testicles was swelling, it was abnormally large. But he didn’t say anything. “I was embarrassed to tell my dad.”

By the time they got to a hospital it seemed as if the whole world had suddenly jumped into fast-forward: they needed to get it out right away. He had a really, really, really bad kind of cancer.

“They didn’t tell me that, they told my parents that. But kids are perceptive,” he said. And what he was seeing was that his parents were pale in the face and scared to death. There was no real treatment for what he had.

But his parents had a good friend who was a big surgeon in town.

“I don’t know what he did,” Smith said. “This was before the Internet. He got on the phone, he wrote letters all over the country.”

It turned out the foremost work being done at that time was being done just down the road at the Medical College of Virginia, by a young doctor named Harold M. Maurer, M.D.

They met with Dr. Maurer, and Walter Lawrence, M.D., the surgeon. “They laid it out for my parents,” Smith said. “I know at that time my parents did not have great insurance. It was going to flatten them financially, they were going to be left with nothing.”

Dr. Maurer said the studies were very promising. They were having some luck. But he also explained that all of this was very experimental. There would be a lot of trauma – a big exploratory surgery on a 12-year-old boy’s abdomen. There would be rounds of radiation.

Stephen lost his hair. This was 40 years ago, before everybody knew about cancer, before it was a rallying point, before entire school districts shaved their heads in support. Today, there would be a TEAM STEPHEN website. Back then, all anyone knew was that you were different. All anyone knew was that you were very sick.

“I was a mess,” Smith said.

“My parents were amazing, even though I saw them aging by the day in front of me.”

But then something wonderful happened. He got better. The treatment started working. He put weight back on, and they kept checking, and every time they did he was cancer-free.

“It was just miraculous,” Smith said.

Eventually he stopped having to come in for check-ups. He and his doctor lost touch. He was well. He was normal. He went on to live a wonderful life.

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Stephen was afraid of doctors as a kid, but Dr. Maurer was different. “I remember lighting up when he came in the room,” Smith said. His mom always said the same thing.

“Dr. Maurer always had a smile on his face,” Smith said. “He was just so positive. He made me feel like, We’re going to do this. It just wasn’t a question in his mind that I was going to get better.

“That was, for me, a big part of it.”

And then, he did get better.

“I remember (Dr. Maurer) toward the end being almost giddy,” Smith said. “He was so thrilled to have done this.”

What does he remember about Dr. Maurer?

“He seemed so happy to go to work every day. He was in his element. He was in his skin.”

Forty years later, Smith started having health problems. They had told him long ago that this would happen, that the radiation would someday exact its price. It might take five years, might take 10.

He was depressed, being sick, but when he realized why it was happening, it brought a lot of the old memories back. Smith found himself wanting to reach out to his old friend and former doctor, to let him know what was happening; to tell Dr. Maurer how it had all turned out.

He called the UNMC chancellor on the phone: “He told me, ‘It’s so great to hear from you,’” Smith said. “He said, ‘We helped change the world. We helped the way cancer is treated, even today. Be proud of what you’ve gone through, because it really was groundbreaking.’”

Then Dr. Maurer went to California on a University of Nebraska Foundation trip, and his old patient met him there. They had a mini reunion, something Smith calls “one of the high points of my life.”

At one point Smith found himself talking with Beverly Maurer. “She told me, ‘Those were his happiest days, when he was right there in the trenches.’

“Those were the times when he was really at his best.”

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They have a lot in common, doctor and patient. In their best days, each of them worked with kids.

At the beginning of this story, we told you that Smith and Dr. Maurer are both entering new phases in their lives. Dr. Maurer is leaving his role as chancellor.

And with these health problems … Smith wonders if he’s already taught his last class.

He’s only 51. And he hasn’t yet been able to bring himself to file disability/early-retirement paperwork yet. But he admits he’s just putting it off. It’s only a matter of time.

Lately, he’s been thinking a lot about Dr. Maurer.

“We’re stopping working,” Smith said. “But it doesn’t mean the work that we do stops. It continues on.

“That’s a pretty profound thing when you think about it,” he said. “Your work is very much alive and well.”

He may as well have been saying it to his former doctor and old friend.

My ‘Hercules Hypothesis’ will bring fame, funding to UNMC

Every so often, UNMC Today editor John Keenan will poke his head around the corner and ask, “Do you have any story ideas for Wellness Wednesday?”

Dude, you just caught me “shotgunning” a Diet Coke. Do I LOOK like I have any story ideas for Wellness Wednesday?

But now it occurs to me that I do have an idea for a fitness activity. It comes from a story that I heard as a kid, about Hercules, the superhero of Greek mythology. It seems that Hercules became so incredibly strong because when he was a boy, he had a pet calf. Every day he would lift this calf. Every day, the calf would grow, imperceptibly. Day to day, you’d never notice stuff like that. That’s why time-lapse photography is so mind-blowing. But by the time he was a teenager he was lifting a huge bull over his head. Next thing you know, he was the world’s strongest man.

And, on top of that, he got to hang out with Xena, Warrior Princess.

Also, he got to hang out with Xena, Warrior Princess.

This is my kind of workout plan. You never notice the weight getting any heavier, yet you get into good enough shape to fight lions and slay nine-headed hydras. Take that, 24-hour Fitness!

Then it hit me: I have young kids.* They’re always asking me to carry them. And they grow, every day – but you never notice it until you see a picture of them from six months ago.

* (Don’t worry. I’m not going to turn this blog into an excuse for showing you pictures of my kids. Although, trust me — they’re pretty cute.)

So, that’s it. Instead of stopping carrying them when they reach a certain age, like I usually do, I’ll just keep going. It will be my research project. Everyone at UNMC has a research project, why can’t I have one? I’ll lift my kids every day, they’ll keep growing, I’ll never notice, and by the time they turn 18 I’ll be built like The Incredible Hulk. It’s perfect!

Bruce (David?) Banner. Totally underrated scientist. He took Dr. Jekyll’s work to the next level. His problem was, he never understood the importance of taking your discoveries to the marketplace. Those stretchable pants he developed would have really sold.

Bruce (or was it David?) Banner. Totally underrated scientist. He took Dr. Jekyll’s work to the next level. His problem was, he never understood the importance of bringing your discoveries to the marketplace. Those stretchable pants he developed would have been a huge boon to mankind.

Of course, my kids may develop a complex about being carried around by their father, through their high school graduations, but that’s their problem. I’m trying to “feel the burn” here.

I was so excited about what great shape I’m going to be in, I told my wife. Her response was, “When they are 18 you’ll be old.”

OK, fine. This is what I will look like, when my youngest is 18.

OK, fine. I admit it. This is what I will look like, when my youngest turns 18.

That’s my bride.*

* (Again, no pictures. But, also cute.)

Still, she has a good point.

But that’s OK. This makes it even more scientific. Every day they are growing a little bigger without realizing it, but I am also getting a little older without realizing it. So, when do those lines intersect? At what point do I pick them up and then go, “Ooooooooooooh,” and keel over?

Now THAT’S a research project. It’s perfect. Now all I need is a grant. Like, a $1 million grant. For research. And, uh, office supplies.

(I figure something like this goes through lots of paper clips.)

This is going to be awesome. But I know how important peer review is, in science. So as principal investigator of this project, I sent out my proposal to a handful of UNMC’s top researchers, you know, just to see if they had any ideas on how to handle the tsunami of NIH funding I’m about to pull in. Their feedback follows below:

“When I first read it, I didn’t understand what the idea was. … I would say that research generally requires a hypothesis. Is your hypothesis that you would turn into the Incredible Hulk, or that it would be a subtle way of building muscle if you did it every day? Or you have a hypothesis that if you grew muscle slowly, you would never see the time that you could no longer physically pick them up? That part seems unlikely.” – Jennifer Larsen, M.D., vice chancellor for research

“Kalani, I’ve read your proposal, and I feel we should sit down and talk. Speaking of which, would you like to be a part of my research study?” – Howard Liu, M.D., assistant professor of psychiatry

“This is not NIH grant material. However, I suggest you take this to the P90X folks — you may be able to secure some funding through infomercials.” – Michael Huckabee, Ph.D., director of physician assistant education

“I like the fact that you are interested in determining the best approach to improving your fitness level. Unfortunately, your design is problematic. Further consultation with experts in the field is needed prior to submission.” – Gib Willett, Ph.D., associate professor of physical therapy education

“Note to self: Re-set Spam filter.” – Shawn Gibbs, Ph.D., associate dean, professor of environmental, agricultural and occupational health, College of Public Health

How Healthy U saved my life: Part II

PenniPenni Davis is a grant protocol associate who has been at UNMC for 14 years. She is a mother of two and has been married to her husband – “a wonderful man,” Penni says – for almost 30 years.

On June 14, Penni and her husband Sean met with Justin Westervelt, M.D., to get the results of her kidney biopsy.

The report was not good . . .

June 14, 2013: The diagnosis: IgA nephropathy with acute kidney failure.

What?!!! My kidneys were only functioning at 25 percent to 30 percent, and I had 60 percent to 70 percent scar tissue. According to the doctor, this is something that can’t be fixed. All we could do was try to control what function I did have. And if we did nothing, I had three- to six months before dialysis and transplant.

What?!!! Wait, I’m not that sick.

“Yes,” I was told. “You are.”

My creatinine level was now 3.29. This disease had been growing in my body for 20 to 30 years and was only now starting to show symptoms. It’s three times more prevalent in men than women. A person can live with lower kidney function, and if the IgA nephropathy was all that was going on, I could probably take some mild drug, keep my function as is and be OK for quite a while.

For more information on the Healthy U program, click here.

But wait — I’m special and rare. I also have some aggressive form of this disease, in something called crescent formations. It’s destroying my kidney’s filters in a hurry. We needed to do something to get that under control, to postpone transplant as long as possible. The doctor’s recommendation was to start me on Lisinopril (it works to protect the function you still have in your kidneys by decreasing the amount of protein you spill in your urine) and get a blood pressure monitor to keep track of my blood pressure, so I wouldn’t pass out from it going too low.

The general symptoms of my disease are high blood pressure, high cholesterol and swelling of the hands and feet. I had none of these symptoms, only nausea and fatigue, which I’m told was caused by the high creatinine levels. If the drugs the doctor suggested were successful, I could wait for a year, maybe even two before needing a transplant.

What?!!! It’s not if I need one, it’s when?

Dr. Westervelt also recommended the bone marrow biopsy, something I really didn’t want. But it would rule out any other issues, and it would need to be done at some point for a transplant. So I might as well get it done.

To say that my husband and I felt blindsided and shocked is a “minor” understatement. I looked at my husband and said, “This is just surreal!” Where did this brick wall we’d run into come from? In less than three weeks, I’d gone from normal and fine to sick and needing a kidney transplant.

I had lost about 15 pounds by this time and was feeling awful. The doctor recommended that we start Prednisone (a steroid), and then we would do a medium strength dose of a chemotherapy drug (cyclophosphamide) by IV in a couple of weeks. As this is an autoimmune disease, they wanted to lower my immunity by the drugs to see if the IgA aggressive crescent formations would calm down.

We went home that night and just stared at each other for a while, cried and then started to pray. Our constant prayer is that the drugs would do what they are supposed to do and with “no side effects!”

June 25, 2013: Bone marrow biopsy. Yuck! I will say that the nurses, technicians, etc. in the cancer treatment center at The Lied Transplant Center were great. They were sensitive to my anxiety and gave me as much information as they could to help me understand what was going to happen. The procedure is not great — but it is quick. My back was sore again for a couple of days but really not bad.

June 29, 2013: We had a 110th birthday party for both me and my husband (it’s a big year at our house). It was great fun, and even though I still felt very nauseous and tired, I had a great time. My in-laws came from Indiana to help out with the party, and they, my kids and grandkids were wonderful! I sat down a lot and didn’t eat much, but it was great to spend time with people who I care for and who care for me. They all made the day extremely special.

June 30, 2013: I started the Prednisone.

I wanted to wait until after the party, as I didn’t know how this stuff was going to react in me. Turns out it was an answer to prayer. The nausea went away; I got back a bunch of energy and started to feel almost normal again. If I’d known how much better I would feel, I would never have waited to start taking it. I could eat almost anything now, just smaller portions – I still had to watch the spicy stuff, but it was so awesome to feel better.

My research into IgA nephropathy also recommended cutting back on protein (so the kidneys don’t have to work so hard to flush the proteins out) and cutting back on salt and caffeine (to keep the blood pressure and any swelling down). I had been doing that and maybe it was helping also.

So far, I’ve had no bad side effects to this drug — only good ones. Yea!

July 1, 2013: It was time for the appointment with Dr. Vose – the results of the bone marrow biopsy.

End of Part Two

THURSDAY: The conclusion