Come to the Relay and see an (soon-to-be) Olympian

There are a lot of reasons why you should come out for the Red Baloon Run & Relay next Saturday, Oct. 9: To support the patients at Children's. To get some good exercise on a Saturday morning. To bring your family together for a good cause.

And there's another reason that you probably don't know: You'll get to see an Olympian. Or at least one in training. Heidi Morse wouldn't want me to call her that, but she's earned the title.

The Children's ICU nurse was running 80 to 100 miles a week to train for Olympic qualifying - while working 12-hour shifts and leading the youth group at her church - before getting a stress fracture in her pelvis a couple of months ago.

She's feeling better now, though, and is gradually working her way back to Olympic training. The Red Baloon Run & Relay will be her first organized race on that path. She's on the Simtations, a team of Children's staff who either work in or interact with the Sim Lab and some of their family members, including Heidi's parents.

"I can't promise how fast I'll run, but I'm excited to do it," she said.

I asked her how fast she usually runs.

Her answer: "I was running a 3-hour marathon (which equates to under 7 minutes per mile), but I'm running around a 9:30 mile right now, which is really slow for me."

My response: "That would be the fastest mile of my life."

Her goal is to run a 2:46:00 marathon at the Boston Marathon this spring, which would qualify her to run in the Olympic trials in Houston in Janurary, 2012.

"It's going to take a lot of work, but it's within reach," she said.

She said she'll keep running even if she doesn't qualify for the Olympics, though.

"It's the only time I can get away from my cell phone and all the other distractions and listen to music and have prayer time. It's my de-stress time."

You can meet her for yourself next week at the relay, which "runs" from 9:30 a.m. to noon at Children's Medical Center at Legacy. You can also donate to Children's on behalf of Heidi and the Simtations here.

Back in the game

September is National Childhood Cancer Awareness Month. View a gallery of photos of children with cancer called “For The Moment” that showcases a day in the life of cancer patients and their families – whether at home, their struggles in treatment and through recovery.

Matt Burpee, 7, is enjoying first grade and playing soccer with his team, The Alligators (a name Matt chose), and that’s pretty amazing. You see, after the onset of what initially seemed like a virus, Matt was diagnosed with medulloblastoma, the most common form of malignant brain tumor in children. Matt’s neurosurgeon said the little boy from Heath, Texas, might not be able to run after his cancer treatments were completed. But thanks to a combination of early detection, neurosurgery, radiation and chemotherapy and a great medical care team, Matt is doing well and has returned to the sport he loves.

The Burpee family first became worried about Matt last October when, during one week, he developed severe headaches and vomiting. The family’s pediatrician referred the family to Children’s Medical Center at Legacy in Plano, where Matt received an MRI that helped diagnose the tumor in his brain. From there, the family went to the Children’s downtown Dallas facility, where Matt had surgery the next day.

“It was quite a shock,” said Matt’s mom, Staci Burpee. The surgery, performed by Dr. David Sacco, was almost emergency in nature due to the large build-up of cerebrospinal fluid in Matt’s brain. That is what had been causing his headaches. Dr. Sacco successfully removed all but one small spot of tumor that had spread to another part of Matt’s brain and Matt then spent two weeks at Children’s, whose Center for Cancer and Blood Disorders is the only National Cancer Institute-designated pediatric oncology program in North Texas.

Radiation therapy
After 6 weeks at home, Matt began the next stage of his treatment: 31 radiation treatments. The treatments went on 5 days a week for 6 weeks and were completed after the New Year.

Radiation was tough on Matt, said Staci. He had to be sedated for each procedure — the patient has to remain absolutely still during treatment, tough for anybody, but especially a small child — and he would wake up fighting, she said. Plus, he got an extra dose of radiation directed at the small spot of tumor left in his brain that couldn’t be removed during surgery.

Additional treatment
But Matt’s treatment wasn’t over yet. To ensure the best possible outcome and to rid his brain of any remaining cancer cells, Matt had to have 6 months of chemotherapy. His schedule was two weeks on treatment and two weeks off. Chemo wasn’t as bad as radiation, said his mom, because Matt loved the playrooms at Children’s, where he could do arts and crafts. “He’s a very creative kid.” His treatment was led by his neuro-oncologist, Dr. Laura Klesse.

Matt’s next big day is in November, when he will receive an evaluation by his neurology team and the oncology team. It’ll be a full-scale assessment of where he is in his process of recovery and will include his neurosurgeon, Dr. Sacco, his neuro-oncologist, his neurologist and Children’s School Services, among others. Said Dr. Klesse: “The assessment gives us a good team approach to Matt’s care. If any issues arise, we will deal with them there.”

The next step in Matt’s care is an MRI every 3 months to see if his brain remains clear of cancer cells. That will likely continue for the next two years. After that, he will continue to have periodic MRIs and clinical assessments.

But to Matt, the most important things are the right here and now, playing with the Alligators. His dad, John Burpee, is the coach. Thanks to the dedicated care team at Children’s, Matt’s back in the game.

Teen raises $16,000 through tennis tourney

Nina Quirk, a 16-year-old student at The Hockaday School in Dallas, shares her thoughts on how she raised thousands for Children's through playing in the Children Helping Children Junior Singles Tennis Tournament.

I participated in my first Children Helping Children Junior Singles Tennis Tournament at age 11. I remember how I thought the idea of helping children and doing something I love seemed like a pretty sweet deal.

At the kick-off event the night before the tournament, I received a medical wristband with a child's name on it and the particular battle this child was facing. I wore this wristband for the entire tournament and realized I was playing for much more than winning a tennis tournament; I was playing in honor of Adrian. I made it to the finals that year and came in second place. The honor was great, but when I came home and put that wristband on my desk, I knew that wasn't the most important part of the tournament. I raised $256 that year and instantly decided that I was going to come back the next year and try to raise more.

I am now 16 and have been playing this tournament for the last five years. With the support and loyalty of family and friends, I have been able to raise more than $16,000 to date for Children's Medical Center.

This year, in addition to my usual fundraising efforts, I decided that fundraising is something that can be accomplished in many ways. I was passionate about doing something that involved my friends and my school.

I decided to start a club at The Hockaday School that I named: "Pocket Full of Daisies." I recruited friends at our annual club fair and made a goal of having at least one clothing re-sale drive per year to benefit Children's. The club met and collected gently used clothing, toys and other children's items to be organized and sold at the beginning of the summer. We managed to raise $630 on one very HOT day! I am proud of this club and hope to leave a legacy at my school for others to continue long after I graduate.

Another simple effort I made this year was to collect all of the spare change in my home during the year - $170! This made me realize it doesn't take much effort to make a difference. I know that Children's is grateful for my efforts and it makes me feel good to give back.

In my free time, I also volunteer in one of the playroom at Children's. It's rewarding for me to meet and spend time with these precious children. I enjoy playing with them, doing craft activities or simply talking with them.

I'm looking forward to the 2010 tournament and receiving my wristband. I will wear it with pride, knowing that I have contributed in some way to making life better for children who are facing medical challenges.

Editor's Note: If you'd like to contribute to Nina's fundraising efforts, click on "Sponsor a Player" on the CHC page and enter Nina's name in the blank.

A search for support

Life is frustrating. Work is hard. Family is harder. And cars always have something wrong with them. But I can at least take comfort in being able to share my gripes with others who endure the same things.

It's not that simple for Jennifer Cagle. Her 6-year-old son, Tanner, suffers from a disease that affects only 15 in every 100,000 people. You don't need to be a mathematician to know that means very few people can relate with what she goes through as Tanner's mother.

"When I tell people that my son has nephrotic syndrome, they don't even know what it is," Jennifer said.

Nephrotic syndrome is a kidney disease that causes the body to excrete too much protein in urine. It results in kidney damage and excessive fluid retention.

Tanner's case is so severe that he will eventually require a kidney transplant to survive. But, because of the way his disease works, his body will most likely attack the new transplant, too.

Focusing on the present with the President
Jennifer doesn't know Tanner's longterm prognosis, but she doesn't focus on the uncertainty.

"I can either mope and be depressed about it and be like, 'Oh, poor me. Poor him.' Or I can enjoy every moment that I have with him, especially when he is in remission because those moments can be taken away so fast. I don't want to have regrets. And I would regret burying my head in a pillow and missing out on his life."

Tanner is currently in remission and has been for the last several months. Although Jennifer is grateful, she knows it won't last forever.

Her main focus now is raising awareness of the disease. She helped organize the NephCure Foundation's first-ever walk in Dallas this past April, which ended up raising around $14,000. She has also gotten the word out by exchanging letters with President Obama about her son's illness.

Looking for a support group
Jennifer hopes that generating attention about nephrotic syndrome will encourage more research of the disease, which hopefully one day will lead to a cure. But her efforts aren't solely geared to that end.

She also just wants to find people to talk with about the disease.

"I want to meet other people in Texas who deal with this disease," she said. "Maybe we could develop some sort of support group and help each other."

Editor's note: If you've personally encountered nephrotic syndrome or know anyone who deals with the disease, will you please post a comment to show Jennifer that there are other people around her going through the same thing?

Christian’s journey through cancer

Shortly after the Graef family moved from Colorado to Flower Mound, Texas, their 12-year-old son Christian was diagnosed in the Emergency Department at Children’s Medical Center with blood clots in his jugular vein and shoulder. He had to undergo 12 weeks of blood thinner injections. “All of the fear and anxiety associated with the daily injections, the testing to monitor the blood clots, blood tests, and not knowing the cause of the clots, was all compounded by the many changes associated with our moving,” says Christian’s mom, Shawn. That was just the beginning of the family’s medical journey, however. Christian, a competitive soccer player, was diagnosed at Children’s with a tumor in his chest on Sunday, Oct. 18, 2009. Read excerpts of the Graef family’s story:

“Just when we all felt we could move on and Christian could reengage with all of the sports he loved to play, we started to notice swelling in his face and upper chest. On Sunday morning, October 18, 2009, our world turned upside down. The doctors told us Christian had a mass in his chest. It was putting pressure on the superior vena cava and preventing the blood from his head and shoulders from returning back to his heart properly.

“He was admitted to the cancer unit at Children's Medical Center and the cascade of testing, imaging, and conversations with doctors and nurses moved rapidly to make a diagnosis. Over the next three days, Christian needed surgeries for a spinal tap and bilateral bone marrow biopsies to determine if the cancer had spread to his bones (it had not). He also had a needle biopsy of the tumor and the placement of a port to administer the chemotherapy he would eventually need.

“We were shocked, anxious, worried, and scared. Why was our amazing 12-year-old son suffering, again? What kind of cancer did he have? What would the treatment consist of? How long would it take? Questions and fears were swirling through our heads at a dizzying rate.

“We soon found answers. Christian was diagnosed with anaplastic large cell lymphoma, requiring inpatient stays every 3-4 weeks for about 3-6 days of chemotherapy. The full treatment would take 4-6 months.”

Decisions to be made about treatment
While the family was given a diagnosis, they pondered where to have their son treated. Ultimately, the reputation of Children’s Medical Center and our medical staff made them choose Children’s for Christian’s care.

“Amidst all of our fears and concerns we had decisions to make. Where should we take him for treatment, who would be the best doctor for Christian, and what treatment option should he receive? We did a great deal of due diligence before making our decisions. Children's Medical Center was ranked as one of the top 10 pediatric oncology hospitals in the nation, and the best in the Dallas-Fort Worth Metroplex. Dr. Naomi Winick was ranked in several different reports as one of the best pediatric oncologists, and the tremendous care Christian had received up to that point from the amazing doctors and nurses made our decision easier. We would do everything at Children's Medical Center and Dr. Winick would be Christian's lead doctor. Once these decisions were made we focused all of our attention on doing everything we could to help Christian win the fight of his life.

“The doctors, nurses, child life specialists and other members of Christian's care team at Children's were there for him and our family throughout his treatment. They listened to our concerns, answered all our questions, and made sure we had a full understanding of what was happening every step along the way.

“Kicks for Cancer”
Today, Christian is in remission, he is back on the soccer field with his team, ASG Futbol Club, and is playing football for his middle school. He’s back to being an amazing active kid, says his mom. He has even helped raised funds for Children’s.

“Christian and his ASG Futbol Club soccer friends are even giving back to the hospital that treated him. Christian's club director, coach and teammates created the "Kicks for Cancer," raising more than $18,000 in its first year for the Children's Center for Cancer and Blood Disorders.”

September is national Childhood Cancer Awareness Month. View a gallery of photos of children with cancer called “For The Moment” that showcases a day in the life of cancer patients and their families – whether at home, their struggles in treatment and through recovery.

A first-hand account on sports supplements

Although the image I see in the mirror every day makes it harder and harder to believe, I once was a high school running back. I may not have been a very good running back, but I was a running back nonetheless.

As is the case with most running backs not named Bettis, Dayne or Lane, keeping fit was paramount for me. I'd work out in some form or fashion every day (which I later discovered to be counterproductive) and was an absolute fanatic about what I ate. Ask my poor mother, who had to endure my high-maintenance diet night after night.

"Hey, Craigo, what do you want for dinner tonight? Lasagna? Pork chops?" she'd ask me.

"Anything without fat in it, Ma. I don't want any of the Devil's food (my affectionate term for high-fat items)."

Most nights we'd eat grilled chicken salad. But I had extreme periods where I only ate fat-free deli meats and cheese slices. Obviously, like the daily workouts, this was actually worse for my health, but I didn't see it like that.

I was going to be the best high school running back I could possibly be. Keeping fat and calories out of my body, I thought, was essential to that goal.

Along came supplements
My obsession with fitness eventually led to me looking for some external boosts as well. To my credit, I never tried steroids because I knew about their dangerous consequences. BUT I did try everything I could buy over the counter without knowing a thing about their consequences: protein shakes, amino acid pills, creatine, androstene, fat burners and all sorts of different combinations of them together. I even took pseudophedrine every morning because I heard it increased your metabolism.

By grace alone, I survived all of my supplement experiments without incurring any long-term health damage - at least, that I'm aware of. But the more I learn about supplements as a medical writer, the more amazed I am that I didn't turn out worse for taking them.

Androstene, which Mark McGwire made famous during his "magical" 1998 home run barrage, was taken off the market in 2004 in the U.S. because it was found to potentially have some of the same side effects as anabolic steroids: testicular cancer, infertility, stroke and an increased risk of heart disease. Several of my teammates and I took it because we wanted to get stronger.

The fat burners, which I took daily, have even led to deaths. As for the creatine and protein shakes, they aren't nearly as harmful, although both in excess can lead to kidney issues.

Older and wiser (or, at least, better informed)
I don't obsess about exercise and diet today nearly as much as I did in high school. In fact, I have thought about them so little the past few years that I'm having to re-discipline myself to get in healthy BMI territory. It's hard. My wife can attest, because she's now enduring my same narrow diet demands that my mother dealt with when I was a teenager.

I have entertained the idea of using some of the same supplements I used to take, but those ideas don't last long. I always come back to one main thought: "It isn't worth the risk."

Dr. Shane Miller, a pediatric sports medicine specialist at Children's, agrees, especially in the case of young athletes. Supplements don't require FDA approval, and no studies have been performed to see their effects on childrens' bodies.

Moreover, he adds, they really haven't been proven to increase athletic performance at all. I can personally verify this since all of my supplement ingestion resulted in a whopping ZERO scholarship offers.

"If young athletes are eating healthy and working out, they don't need supplements," Dr. Miller says. "The body makes most of the things in supplements on its own, and we also get them from foods in our diet."

So, if your young athlete insists that he has to have supplements to be a good football player, tell him that he can get all the strength-building nutrients he needs from a balanced diet. Better yet, if he's anything like I was, tell him to enjoy an occasional hamburger.

Toddler falls into backyard pool, brother tries to pull him out

Too many children in Texas have drowned this year - 62 to be exact. And that number doesn't even include those who have nearly drowned, like 2-year-old Mitch Kinder. Perfect swimming weather is coming our way for Labor Day weekend, and there's no doubt that kids will be jumping at the chance to take one last dip. Read Mitch's story and learn our water safety tips before heading to the lake or pool.

'Erika was only gone for a few minutes'
Russell Kinder, Mitch's dad, came home to every parent's worst nightmare on August 20. The fire department was in front of the house knocking down the front door, and his wife, Erika, was in the backyard performing CPR on their youngest son.

"I went into a super functional mode just trying to help in whatever way I could without even knowing what happened," Russell said.

Russell soon learned that his 4-year-old son, Rafe, and Mitch were throwing dirt and rocks into the backyard pool when Mitch fell in. Rafe tried to pull his brother out but couldn't reach him and ran inside for Erika, who was tracking down their new puppy.

"It all happened so fast," Russell said. "On that timeline, the boys were out of Erika's sight for only a few minutes."

A bright spot on a dark day
Paramedics continued CPR and took Mitch to a nearby hospital in Plano where they worked on his heart. Twenty minutes later Mitch had a heartbeat. A helicopter flew him to Children's, where clinicians worked on his lungs.

Children like Mitch who are underwater for a couple of minutes have a high probability for irreversible brain damage. But as the state's first pedicatric hospital with Level 1 Trauma status, Children's has the experts and resources needed for treating these children.

"We had a bright spot in our day when a doctor said Mitch was a candidate for a hypothermia trial using a cooling blanket to help the swelling in his brain," Russell said. "We thought it would give him more of a chance to come away with less brain damage. It was only uphill from there. Everything has gone smashingly well at Children's."

As Mitch continues to recover, Erika and Russell are encouraged with his every move. At this point, he is working on gripping stuffed animals and sitting up in a wheelchair. When the medications wear off, they will find out how much brain damage remains.

"We're in a waiting game at this point," Russell said. "It's very hard to have this kind of patience, but he acts more and more like our old Mitch every day. He's always been a stubborn little boy and does things his own way. I think that'll work in his favor this time."

Keep your kids safe in the water
Multiple barriers to the pool can help to prevent your kids from falling in. Erika and Russell already have plans to build a secure fence around their pool.

Learn about additional water safety with the interactive water safety guide and prevent close calls using these tips.

Sign up for a free Water Watcher tag to make sure your kids are always supervised.

From tiny transplant patient to schoolboy

This is a big week for Maddie and Gray Harrison. Their son, Keegan, started school. Like most parents this time of year, they had the first-day-of-school jitters as they walked their almost 3-year-old into the classroom. But their fears weren't about whether Keegan would get homesick or share his toys. Instead they worried about the germs he'd be exposed to that could land him back in the hospital. And his feeding and communication issues. But they also knew that Keegan has proven to be a fighter since being born with a heart defect. At just 7 days old, Keegan was the smallest and youngest in Texas to ever undergo a heart transplant. So Maddie and Gray dropped him off and hoped for the best.

Read about preparing for Keegan's first day through Maddie's eyes...

"Keegan is starting school this week. Yep, at the urging of the transplant team at Children's, he'll start Mother's Day Out at a nearby church two days a week. I hate to admit it, but I'm absolutely, positively terrified about it.

I know beyond a shadow of a doubt that he will have the time of his little life there. I know he'll be excited to be in his class with his friends Lainey, Gage and Ainsley. I know he'll grow up before my eyes, and I hope that his speech and eating will take off because of it. I know these are the reasons we were told to enroll him. I'm certainly grateful for a transplant team that stays positive and has realistic goals for him. I can't wait to see all the artwork he'll bring home, to read the daily reports of the fun things he did, to see him shine to his full potential. We are blessed to have a school with teachers and administrators willing to take on the responsibility and risk of caring for Keegan and other parents in his class that already care so much about him.

Overwhelming fear
But I'm paralyzed by the fear that he'll end up inpatient way too much when we are so close to a year of being at home. I'm afraid that the teachers will get frustrated that his communication skills are so far behind his peers, that he's the only one in his class that hasn't even thought about potty training (you try talking potty with a kid pumped full of formula all night and who has GI problems, for lack of a more PC term). I'm nervous about possibly having to ask every parent in his class to please choose flu shots instead of the nasal mist that contains live virus. We have spent three years shielding him from others to keep him well, and here we are, sending him to the front lines of germ warfare with no armor whatsoever.

It's not fair that we have to worry about these things. It's not fair that the choice to send my son to school was not made because he wanted to or because he was old enough. No, it was made as a "quality of life" issue. I shouldn't have to think that this is something he needs to do because if he were gone tomorrow or next week or next year, we wouldn't want to have not given him the experience of learning and playing with other children his age. It's not fair that he'll miss the first full day of school for his annual cardiac work-up. Because we need to cut his neck open and snake a line down to his heart for a biopsy to make sure his body isn't rejecting his beautiful heart. It's not fair that every day when I drop him off, I'll have to drive away wondering if it'll all come crashing down today. This should be fun and exciting, but instead, all I can think about is that it's just not fair.

Grateful for life
But then I remember all the parents I know who would love to be the ones walking their child into school, no matter how unfair it is. The ones who don't get to hug and kiss their child anymore and send them off to have fun, even if all they do is sit and worry about them. The ones who would give anything to spend another night awake tending to their child. And my worry seems petty. I might not get to walk Keegan into school for as many years as I would want, but this week, I get to. It will take a huge leap of faith to walk away and put my trust in Him. But I will, because He has done wonderful things for us, and we couldn't be more grateful."

Go to Maddie's blog and read an update on Keegan's first day of school.

Beads commemorate fight against serious illness

I have a strand of pearls that holds special meaning for me: They were the beads I wore on my wedding day. When you think about it, beads have been around as adornment for tens of thousands of years and have always stood as tokens of a special occasion, a transition in life, the marking of a special day. Sometimes, those days are good, sometimes they can be life-changing and sometimes, like at Children’s Medical Center, they can mark a child’s journey through illness.

You see, Children’s participates in a unique, national non-profit program called Beads of Courage that is helping patients in the Center for Cancer and Blood Disorders and The Heart Center do just that. Each child receives a bead for each procedure he or she undergoes and for every time they come to the hospital or outpatient center. Each bead, underwritten by Heroes for Children for oncology patients, is color-coded to the procedure or visit, so, for example, a red bead means the child has gotten a blood transfusion, a black bead means a “poke” or the start of an IV, and yellow means a night of hospitalization.

There are also “special” beads in different shapes and sizes given to each child for acts of courage or for getting through a particularly bad day, painful procedure or surgery, or sometimes, “just because.” The beads are made into personalized necklaces with each child’s name spelled out in small blocks that remind me of “Boggle” game pieces.

MiKyla’s beads
Some children with really serious illness can collect armfuls of beads, MiKyla Pickering, for example. Mikyla, 11, who was from Paris, Texas, died recently from acute lymphoblastic leukemia (ALL). It was her second battle with the cancer of the white blood cells. Her mother, Kenda Pickering, says MiKyla collected more than 1,000 beads during the course of her treatment over a two-year period and likens the collection to a “diary.”

Ms. Pickering had this to say about the program:

“Beads of Courage was the best program for MiKyla to help get through rough times and help her see how strong and courageous she was during her cancer treatments for leukemia. The beads were a diary of her treatments…a tangible way to show people and look back at times to see what all she had to go through during her treatment….When she had to do something she didn’t want to have to do during treatment, I would always tell her, 'You’ll get a bead' and she could get through it much easier.

"She accumulated so many beads that they were too heavy to wear so she had them put in a special jar given to her by Beads Of Courage that we carried back and forth from home to the hospital. MiKyla would decorate her IV pole with the strands of beads so everyone at the hospital could see them. Beads of Courage is a great program for children and I would encourage any kid receiving cancer treatments to do this…it’s a great DIARY for the kids and even the parents!”

National Childhood Cancer Awareness Month
Mikyla even designed a special logo that incorporates Beads of Courage to help commemorate this year’s national Childhood Cancer Awareness Month in September. Visit our gallery of photos about the childhood cancer experience. The theme of this year’s gallery is “For the Moment,” which showcases a day in the life of cancer patients and their families – whether at home, through their struggles in treatment or in recovery. A display piece showing MiKyla’s beads with her biography and the Childhood Cancer Awareness Month logo she designed will accompany public showings of the slideshow. If your gallery, company or organization would like to show this exhibit, including MiKyla’s tribute, contact Children’s Center for Cancer and Blood Disorders outreach manager Cristy Ecton at 214-456-2805 or cristy.ecton@childrens.com.