Two brothers, One diagnosis - Part 2

With the help of the Nephrology team at Children’s, Maria Alias and her husband came up with a treatment plan that would allow their two sons with kidney failure, Najib and Safie, to maintain as regular lives as possible.

They elected for both of them to do peritoneal dialysis at home every night while they slept instead of coming to Children’s three times a week for hemodialysis treatments. That allowed them to minimize school absences by only having to visit Children’s for monthly lab workups.

Educators from the Nephrology department – which treats more pediatric dialysis patients than any other hospital in North Texas – then trained them how to operate the home dialysis machine during an intensive three-week session.

“They’re a fantastic family,” the boys’ nephrologist, Dr. Katherine Twombley, said. “They’ve done everything we’ve asked of them to take care of their sons.”

Kidney transplant could be in Najib’s and Safie’s future. One benefit of them being seen at Children’s is that the staff who works with them in the Nephrology department is in constant collaboration with the team in the Transplant department.

“All effort is made to make the transition from dialysis to kidney transplant as seamless as possible,” Dr. Mouin Seikaly, a nephrologist and the medical director of renal transplant at Children’s, said. “The Nephrology and Transplant teams collaborate to make sure there is no disruption in the process for patients or their families.”

In the meantime, Najib is bouncing around everywhere acting like he’s Spiderman, and Safie is playing video games like any other third grader. Yet, it’s likely that the only way they will be able to continue to live with such vitality in the long run is to receive new kidneys.

April is National Donate Life Month, and Children’s is encouraging everyone who is able to register to be an organ donor by registering at http://donatelife.net/. It’s free, only takes about a minute to do and saves lives.

“The need is real when you consider the facts,” Stephen Pottoore, administrative director of Nephrology, said. “Someone is added to the transplant waiting list every 10 minutes. On average, 18 people die each day waiting for a transplant because of the shortage of donated organs.”

Two brothers, One Diagnosis - Part 1

Maria Alias had no idea what nephrophthisis meant when she brought her two sons, Safie and Najib, from Malaysia to America in 2005.

But she learned very quickly in the summer of 2011. The boys’ father noticed that Najib, then 6, had uncontrollable tremors in his hands one morning in July when Maria was out of town. By the time she returned, Najib had been given the strange-sounding diagnosis at Children’s. It meant his kidneys were failing him.

She didn’t even have time to process Najib’s diagnosis when 8-year-old Safie developed a continuous nosebleed in August. She and her husband knew by then that nephrophthisis was genetic.

So, instead of taking Safie to the closest emergency room to their Kaufman home, they brought him directly to Children’s, assuming he had the same disease as his brother. And their assumption was right.

The boy’s nephrologist at Children’s, Dr. Katherine Twombley, had never seen anything like it. Out of the hundreds of patients she had treated for various kidney ailments, she’d never had two brothers with nephrophthisis. And the fact that both presented within a month of each other made their situation even more unusual – and challenging for their mother.

“It was very difficult to deal with,” Maria said. “But I didn’t have a choice.”

Come back to our blog tomorrow morning to learn how the Children’s team is helping Maria take care of her two boys.

What to look for in Episode 5

Episode 5 of Children’s Med Dallas focuses on the youngest and smallest patients at Children’s – the ones who occupy our neonatal intensive care unit or NICU. You’ll get to see three families who entrust their babies’ lives to our staff, believing that the “Level 3C” NICU accreditation means the most delicate and complex cases can be figured out and rescued here.

Drs. Rashmin Savani and James Moore, the medical directors of the NICU, will be shown caring for the patients and counseling their parents. Viewers will also get to see Dr. Savani interact with his own family at home, including teaching his teenage son how to drive.

The first patient shown will be newborn Dakayta, who was introduced at the end of Episode 4. Dakayta was born with spina bifida and needs immediate surgery to enclose her spine. Dr. Dale Swift, a Children’s neurosurgeon, is introduced in Episode 5 as he’s called in to correct Dakayta’s condition.

Three new patients will also be introduced: 9-month-old Zoe and 23-week-old twins Kennedy and Audrey. Zoe is experiencing mysterious episodes of breathlessness. Kennedy and Audrey came to Children’s from Longview after being born 17 weeks early at 15 ounces and 19 ounces respectively.

So, please watch at 6:30 p.m. this Saturday, March 31, on WFAA Channel 8 or afterward on our Facebook page to see how the Children’s staff tries to rescue these babies who won’t survive without medical intervention.

Clowning around at Children's

Crystal Goss is a senior communications specialist at Children's. This blog is her account of a day spent with the Funnyatrics clowns.


I knew the clowns from the Children’s Funnyatrics Program were going to be funny. I mean, they are clowns.

We asked them to hang out with us for a behind-the-scenes photo and video shoot for the second season of the hospital’s documentary Children’s Med Dallas. As expected, they were FUNNY. So funny. Our group – consisting of a videographer, creative director, support staff and photographers – were all in stitches laughing at their goofy antics and general silliness, from kazoo-playing to dancing. One of the products of that silliness was an impromptu song about Children’s Med Dallas, which you can watch below.



The thing I didn’t expect though was the heart that our clowns would bring to the shoot, the heart they bring to their work every day. Beyond the silly, our clowns are really all about healing by the power of laughter. And they love working with our patients and staff. Take a look for yourself at the funny and serious moments during our shoot with these clever and compassionate clowns.



Catch the clowns' cameo on Children’s Med Dallas at 6:30 p.m. this Saturday on WFAA Channel 8.

What being a marrow donor really means

Last week, a throng of Children's employees, including myself, got to watch an amazing meeting here at Children's. It was a long-awaited reunion of sorts between 6-year-old Laurel Good and Krista Katris, 23. Krista donated her bone marrow to Laurel over a year ago, a gift that saved Laurel's life.

Laurel, who was diagnosed at birth with TAR syndrome, a rare genetic disorder which can lead to bone marrow failure and is marked by low platelets and the absence of radius bones in the forearms, is now in perfect health thanks to Krista's willingness to join the Marrow Registry and donate once she was called.

Krista said she couldn't wait for the day when she could meet Laurel. Laurel and her dad Ken and sister Darby, 12, gave Krista many gifts, including a homemade beaded necklace Laurel made for Krista. Laurel's mom Terri and grandmother Jan were also apart of the meeting.


Krista had gifts of her own. She gave Laurel an Americal Girl Doll she had custom made to look like Laurel. The 6-year-old's eyes lit up when she saw Krista's dad Chris carry over the shopping bag with Laurel's doll and accessories it. "It's my very own," Laurel shouted while she showed off her new doll.We've asked you all month to get typed to be on the Bone Marrow Registry, telling you that you could save a life. But when you see a little girl meet the stranger who saved her life with a simple, generous donation, you understand why it's so important to join the Registry.

Through the end of February, Children's will pay for your online registration. For a free kit, visit and enter the coupon code "childrens."

And share your story with us. Why did you decide to get typed?

The flu frenzy

My first child, the darling Emerson Lee Foster, was born at the end of November. The first six weeks of her life have been full of love, joy, celebration and... a lot, lot of paranoia.

Seems like all I can think about sometimes are bad drivers, BPA, blocked airways, falling picture frames and contagious diseases. Yes, I drive myself crazy. And it's been especially difficult to keep my sanity as I've started hearing an excessive amount of sniffling and coughing the past few weeks. In the office. At the store. All over the mall.

I can't escape it. The flu season is revving up. But, luckily, I have the experts at Children's to help me make it through - as you do, too.

So, I asked the director of the infectious disease department at Children's, Dr. Jeffrey Kahn, if he could give us some advice on keeping our children healthy the next couple of months.

Me: When is it safe for parents of babies to take their children out in public places? 8 weeks, 12 weeks, 6 months? Or should they just refrain from taking babies out into crowds during flu season?

Dr. Kahn: There are no official recommendations from the Centers for Disease Control that specify the age that young children can be safely taken to public places during influenza season. The best advice for parents and other caretakers would be to be cautious when influenza is circulating in the community. That information can be found at the CDC website (or follow the CDC's Twitter account that focuses entirely on flu news, @CDCFlu). Good hand washing for anyone who will hold/touch the child will also decrease the risk of influenza transmission. The best way to protect young children from the flu is vaccination (when they reach the appropriate age of older than 6 months). Also, vaccination of all those who come in regular contact with the baby (since a large proportion of influenza infections are acquired from infected individuals within the home) is the best way to protect children who are too young or not eligible to receive the vaccine.

Me: Is it a good idea for children to receive a flu vaccination now if they haven’t already received one? Is it too late?

Dr. Kahn: There is still time for children to get the influenza vaccination. At this time, there is still little influenza activity in north Texas suggesting that the “flu” season is yet to come. Vaccination is the BEST way to protect children from the flu. There are no school requirements for flu vaccination BUT All children who are eligible should be vaccinated.

Me: Is there a difference in the effectiveness of the flu shot and the flu mist?

Dr. Kahn: For the most part, these vaccines are of equal efficacy. For children who are eligible for either vaccine, the decision can be made by the parent, clinician and/or the child!

Please make giving a resolution in 2012

As we are making our New Year's resolutions, let’s add one more thing to our lists – make life better for children. If you have been out and about this holiday season, you may have seen the new Children’s billboards featuring patient Annabella Spears spreading the message of peace, joy, and giving! 2011 has been a challenging but triumphant year for Annabella. As the Spears family celebrates a new year, they have only a scar across their daughter’s tummy to remind them of the events of the past year.

First-time parents, Alexa and Shad, brought newborn Annabella to their Dallas home in Oct. 2010, but after seven weeks, they noticed that her skin looked yellow. A trip to the pediatrician landed Annabella at Children’s, where she underwent extensive testing and was diagnosed with biliary atresia, a rare disease of the liver and bile ducts.

Without a transplant, Annabella’s liver would fail. She was listed for a new liver in March 2011. “I didn’t want to ask, but I kept wondering if we would lose her, because I had no idea really what ‘transplant’ meant, and it sounded really scary,” Alexa said. “I just kept thinking that we couldn’t lose our little girl.”

All her parents could do was wait for a liver that would be a match for Annabella. She regularly visited the Solid Organ Transplant clinic at Children’s and was closely monitored.

Dr. Dev Desai, division director of pediatric transplantation at Children’s and associate professor of surgery at UT Southwestern Medical Center, would be the surgeon implanting the liver when the time came. “Annabella’s liver failed rapidly, and because of the quickness of her disease, she went to the top of the waiting list,” Dr. Desai said.

At 6:30 a.m. on June 16, Alexa and Shad received the call they had been waiting on for three months. They couldn’t believe the day had finally come. Dr. Desai flew in a jet to procure the organ, returning to Children’s where 8-month-old Annabella
was in the operating room being prepped.

After a successful surgery, Annabella recovered perfectly. “It’s pretty amazing — her skin has gotten pinker, and the whites of her eyes are white again, instead of yellow,” Alexa said. “She has energy plus, and she is rolling over, lying on her belly and having a great time. It’s remarkable.”

You can help make stories like Annabella’s possible by joining Children’s in our daily mission to make life better for children. Please consider making a gift today, and make a difference in the life of a child.

Making a statement

Football really isn’t Kelsey Oudshoorn’s game; volleyball is. But the other day, the 15 year old was waiting, football in hand, to meet Roger Staubach and Troy Aikman at Children’s. The two Dallas Cowboys icons shook her hand and autographed her ball, which she bought especially for the occasion.

Kelsey, a patient in the Center for Cancer and Blood Disorders, got to meet the Hall of Fame quarterbacks at a special photo shoot for the children who will participate in the 23rd annual Beyond the Rainbow Luncheon and Fashion Show hosted by the Children’s Cancer Fund.

Proceeds benefit Children’s
Proceeds from the April 15 luncheon and fashion show benefit pediatric cancer research. The fundraiser is expected to net $270,000 for Children’s and UT Southwestern Medical Center. The photos taken with Aikman and Staubach at Children’s will be used as part of a book of art created by children with cancer.

Staubach and Aikman are honorary co-chairs of the annual luncheon and come to Children’s each year for a photo opportunity with the children who will appear in the fashion show.

The fashion show features childhood cancer survivors and those still in treatment, and remembers those who have lost their fight with the disease. Kelsey finished chemotherapy for alveolar rhabdomyosarcoma on Valentine’s Day at Children’s at Legacy in Plano. Her type of cancer is an especially aggressive form of the soft tissue sarcomas that can occur in children.



Red shows her personality
It’s fitting that Kelsey finished her chemo on a day that’s symbolized by red. For the photo shoot with Roger and Troy, Kelsey wore a bright red fedora decorated with a white fabric rose. She accessorized the hat with a long white scarf emblazoned with flowers, a flowered top, and bright red high-top sneakers.

Kelsey says she picked her hat “because it’s bold, and we were asked to dress like our personality.” Red’s not her favorite color, purple is, “but I like the statement.” With a sense of self and of style like that, Kelsey is bound to wow them at the fashion show.

Don’t let food allergies make you a Scrooge

Sherry Thompson knows the challenges of being a parent of a child with food allergies during the holiday season.

Her 3-year-old daughter, Sierra, was diagnosed with egg and milk allergies four months after being born in 2007. When Thanksgiving and Christmas rolled around that year, Sherry was still figuring out how to appropriately feed her baby daughter. So, the idea of having holiday meals at the homes of other people, even if they were family, was a little nerve-wracking.

"The first holiday we had after learning about her food allergies was extremely difficult," Sherry said.

Although Thompson's family has come a long way since then, she adds that the holiday season still presents obstacles because of Sierra's food allergies.

"We're actually going out of town this year, and the family that is going to host us is panicking about what they're going to feed us," she said. "I said, 'It's okay. Just make us some plain things. And don't include certain ingredients for some other things.' But obviously you want those certain traditional foods to still be in place.

"We're learning to adjust."

Dr. Drew Bird, who leads the Food Allergy Center at Children's, said Thompson's dilemma isn't unique. The holidays are typically difficult for all parents of children with food allergies.

"The holidays are difficult because of family gatherings or places where parents may not be cooking all of the food," Dr. Bird said. "It just creates a certain level of anxiety and a unique situation that they don't usually experience during the rest of the year because of being around people who they may not have seen in a while and who aren't familiar with their children's dietary needs."

Cooking class helps parents find solution
Part of the solution is that parents may need to make safe food and bring it along with them to holiday gatherings for their children to eat. The other part is informing family members and friends of different ways to cook meals so that everyone, including people with food allergies, can enjoy them.

But in order for parents to do either part, they first need to know how to make food-allergy friendly holiday foods. The Food Allergy Center recently hosted a holiday cooking class to teach them.

"Teaching parents how they can make a pie or a stuffing or even just something simple like carrots that are safe for their child to have and tasty for everyone else is a big help," Mary Susan Spears, a registered dietitian at Children's who helped lead the class, said. "Then everyone can eat together."

Spears and Children's executive chef Chris Hensel gave a live demonstration on how to cook food-allergy friendly recipes like lemon and sage chicken and glazed dilled carrots. Then they let the parents sample their creations.

The recipes for every item they made – in addition to others like turkey gravy and sausage and grits dressing – were included in a special holiday food allergy cookbook that they gave to the parents in attendance and that is now available online. Alternate ingredients for common food allergens are listed in the recipes, and there are individual lists of substitutes for eggs, milk and wheat.

Sherry Thompson attended and said the cookbook will be especially helpful for her this holiday season.

"It'll be so nice to have the substitutes listed without having to think about anything," she said. "I won't have to go look up something or pull out a chart every time I cook something."

Children's holiday parade

Hope you enjoyed the Children’s Medical Center Holiday Parade Presented by Capital One Bank on Dec. 4 in downtown Dallas as much as I did.

The parade, which many families consider the “official” start of the holiday season, raises money for Children’s Medical Center, specifically for our Child Life department. Our child life specialists work with patients and their siblings to help normalize the hospital experience.

Did you attend the event? If you did, you probably loved the annual spectacle of floats, inflatable balloons, dancers, children’s cartoon characters, bands and clowns. This year also featured American Idol favorite, singer David Archuleta.

If you attended, leave a comment on our Facebook page and while you’re there, check out our holiday gallery of photos, including photos of the parade. Don’t forget to “like” us.

If you couldn’t attend or didn’t see the parade on TV, you can watch it in syndication.

Happy Holidays!

Finding joy even when kids aren’t perfectly healthy

Children’s Medical Center pediatric hematologist-oncologist Paul Harker-Murray talks about the relationships he builds with the families of his cancer patients and what it’s like being the father of a child with Williams syndrome.

This is the first of an occasional series of blogs on the personal lives of physicians and staff at our hospital.

Read excerpts from a Q&A with Dr. Harker-Murray on the balance he and his family find between work and home life. Read the full Q&A with Dr. Harker Murray in the November issue of our online magazine for parents,“Children’s Connect.”

“What you want most for your children is for them to be healthy,” says Dr. Paul Harker-Murray, a cancer specialist at Children’s. But as a doctor who often has to deliver difficult news to families, he knows this hope isn’t always realized. And as the father of a child with Williams syndrome, a genetic disorder that results in physical and developmental delays as well as chronic medical problems, this fact has hit home on a personal level.

Dr. Harker-Murray and his wife, Amy, an adult oncologist, have three young boys. Matthew is 4; Alexander is 2; and Harrison is a newborn. Matthew was diagnosed with Williams syndrome when he was 4 months old.

How has Matthew’s diagnosis affected your family?
“Early on it was hard. The weekend we got the diagnosis was especially rough. What you want most for your children is for them to be healthy. Based on what I knew about Williams syndrome I was able to say to my wife, ‘Matthew will have some challenges, but he will laugh, he will run, he will play, and he will love. He will have a life full of joy.’”

“The strength of our relationship is such that we were able to consciously say to each other: ‘This is going to be stressful, but we’re not going to take the stress out on each other. We’re going to use this to make our relationship stronger.’”

“My wife and I have been blessed in many ways, and although we were a little overwhelmed at first, the reality is that as a two-doctor family, we should be able to raise a child with a developmental disability, and so we moved forward from there.”

Matthew is a delight
“Now, at the age of 4 years, Matthew is a delight — he has a smile that stretches ear to ear and can light up a room. He is making strides at his own pace, is accomplishing new tasks every day, and we are incredibly proud of him.”

“Still, some days can be difficult. For example, when we go to the park, no matter how much fun we are having, it is hard not to notice the difference between Matthew’s skills and those of the other 4-year-olds. That being said, we remind ourselves that ‘Matthew will do what Matthew will do when Matthew is ready to do it.’ We love him for who he is rather than spend our time worrying about his limitations.”

A costume is just a costume and bullying is bullying

You may have read the powerful blog from a mom whose 5-year-old boy dressed up as Daphne from “Scooby-Doo” for a Halloween party.

In the blog, the mom rails against bullying she and her son received at his school for wearing a “girl’s” costume. While his costume was OK with the other kids in school, the Missouri mom says it was the other moms who bullied her about her son’s choice.

Be mindful of how you treat others, our expert says

Regardless of what you think about the kid’s costume choice, the real issue is how we behave toward each other. It’s about the Golden Rule: Treat others as you want to be treated.

Crista Wetherington, a psychologist from Children’s Medical Center in Dallas, had this to say about the mom’s experience: “It’s really important to be mindful of how you treat other people because that models behaviors for your own child. The point is that these moms were not accepting of her son’s costume choice and that they were therefore behaving negatively.”

Wetherington says she doesn’t think the other moms were intentionally trying to be bullying but that their comments were hurtful because they weren’t monitoring what they said as carefully as they could have been.

She noted that one of the other mom’s concerns was about the child and his welfare. Even the boy’s mom said her child became concerned that he might be made fun of for his costume choice. “At such a young age, he already knows that people aren’t always accepting of who you are,” Wetherington said, adding: “These preschoolers were more accepting than their parents. While kids tend to accept what’s in front of them when they’re that little, adults may not.”

The blog has gone viral and has had more than 1 million hits plus heavy media coverage. There have been more than 19,000 comments on the blog, the majority of them supportive of the mom and her son’s choice. The mommy blogger told CNN that she never expected such an uproar over the blog.

What do you think about parents who exhibit bullying types of behaviors?

Rare diagnosis, even rarer treatment

Around this time last year, Jennifer Matlock noticed that her 14-month-old daughter, Peyton, was showing some concerning signs. Her stomach hurt and there was drainage from her belly button.

Jennifer didn't know if it was a big deal, but she felt like safe was better than sorry, so she took Peyton to see her pediatrician, Dr. Elenna Chinn at Rockwall Pediatrics. Dr. Chinn decided after examining Peyton that she needed a follow-up appointment with a specialist; so, she referred her to Dr. Patricio Gargollo, a urologist at Children's.

As soon as Dr. Gargollo saw Peyton, he suspected she had a urachal cyst. An ultrasound confirmed his suspicion.

"Urachal cysts only occur in about one in 5,000 patients," Dr. Gargollo said. "I had only seen two cases before Peyton in my career. But her symptoms were distinct, and we take urachal cysts very seriously because they may lead to urachal cancer if left untreated."

Urachal cancer is one of the worst types of urological cancer. It's extremely aggressive and fatal for nearly everyone who gets it.

HIdES procedure saves the day
If you're like me, you'd expect that there would be an extensive, taxing procedure for such a potentially dangerous condition. But if you're like me, you also don't have the medical expertise of Dr. Gargollo.

Dr. Gargollo invented a new surgical procedure called HIdES earlier this year. It's detailed in this article, but the gist is that he's able to perform elaborate robotic surgeries through two tiny incisions directly beneath the waist line and one incision in the belly button.

The benefit of the procedure is that the resulting scars are hidden behind swim suit bottoms when children like Peyton go to the beach. And for Peyton, that meant the day after surgery.

Because the incisions with HIdES are so small, Peyton was fully recovered the day following her cyst removal and able to leave directly from the hospital for a beach vacation with her family.

Now, a couple of months later, Dr. Gargollo is confident her cyst will not return.

"She's doing really well," he said. "There's no reason to worry about the cyst coming back, and there's no evidence that she ever had it removed because her scars are hidden."

Peyton's mom is grateful.

"We were confident going into the surgery, because we had done our research and knew Dr. Gargollo was going to take care of it," Jennifer said. "She's bounced back completely, and we're just happy that what could've been a really big deal didn't have to be."

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.

Back to school

Brianna Lamar is one of many 14-year-olds in North Texas who began their first week of high school on Monday. When I spoke with her a few weeks ago, she didn't seem worried at all about the adjustment.

"I'm looking forward to it," she said. "It's going to be a little different, because I'm going to be doing a lot more. I'm going to have to balance out a way to be on the debate team, student council and band. And all of my classes except for two are going to be advanced placement."

She wasn't worried about fitting in. Or harder classes. Or growing up. She wasn't worried about any of the typical things high school freshmen worry about.

What did worry Briana? Getting a scratch in PE. She's HIV positive and has been since birth.

But there is a lot more to her than that, as you can tell by the excerpts from our conversation below. A full story on Briana will run in the September issue of Children's Connect.

"I went to Camp Hope this summer. It's a camp full of kids who have HIV. This was my seventh year to go. It's pretty neat to see a bunch of kids just like me and make friends with them. We do outdoor stuff like canoeing, kayaking, riding bikes and going down a zip line. It's a lot of fun. I'm sad, because next year will be my last year to be a camper."

"I don't think about HIV all of the time, but there are times when I do. I wonder what stage it's in. I wonder how big it's gotten. I wonder if my medicines are shrinking it any."

"I call the people who don't have HIV 'The Normals.' It takes them days and weeks to get sick. But for me, sickness can advance within a matter of minutes or hours. And if it lasts for days to weeks, that's when it really gets a lot worse for me. That's why I have to take my medicine every day."

"There are two people that I consider my closest friends. You know, you tell somebody and they usually tell someone else. But I told them (about my condition), and they don't tell anyone else unless they ask me first. They keep it to themselves, and they don't threaten to tell other people if we get in an argument or anything. That's what I really like about them. They're the two most loyal friends I've had."

"When I turn 16, I'll have to get a job. I would love to intern at a veterinarian's office. I'd just like to work with animals in any way possible."

"I've already decided where I want to go to college: Texas A&M. They have a great veterinary program. For my undergrad degree, instead of doing it in 4 years, I'm going to do it in 2. And for my grad degree, instead of doing it in 4 years, I'm going to finish it in 2 also. And then I'll have a 2-year internship with a vet. And then I'll set up an animal sanctuary somewhere in the country in Montana. But not too far from the city."

Summer camp tips

It’s sleep-away and day camp season. Parents may have questions about their child’s medications while at camp and also what to pack for camp and why. One of our Children’s Medical Center nurses just returned from duty as a camp nurse and has these helpful tips for parents and campers alike:

• Find out if there is a camp nurse and where children’s medications are stored.
• Ask who administers medications if not a camp nurse.
• When dropping off your child, stop by to visit the camp nurse or health officer with any health or other concerns and let the nurse know which medications or other healthcare products your child is using.
• Keep all medications in their original packaging, especially prescription drugs, but also over-the-counter medications, herbals, vitamins and homeopathic remedies, such as melatonin. Otherwise, the nurse will not be able to dispense the products to your child.
• Provide the nurse and camp counselor with a list of any known food or environmental allergies your child may have.
• Provide your camper with a reusable water bottle so it will be easier for them to stay hydrated.
• Pack lots of sunscreen and a hat to protect your child from the harsh summer sun.
• You might also want to pack insect spray that is appropriate for your child’s age and size.
• Pack extra socks so your child has dry ones to wear to prevent blisters.
• To help allay possible homesickness, send your child to camp with a memento from home, such as a favorite stuffed animal, toy or photo.

Colby goes to Washington

Colby Elliot is the prototypical picture of an American boy. He has blonde hair, blue eyes and dimples that frame his smile. Norman Rockwell would have loved to use him as a model for one of his Saturday Evening Post covers in the 1950s.

Now that summer has arrived, the 7-year-old from Frisco can be found participating in All-American hobbies like swimming, riding his scooter, playing with his brothers and... meeting with U.S. legislators in Washington, D.C.

You see, Colby is All-American, but he isn't ordinary. His whole life has been spent undergoing treatment for hypoplastic left heart syndrome, a rare congenital defect in which the left side of his heart is severely undeveloped. However, thanks to the dozens of specialists in The Heart Center at Children's, Colby has come a long way since birth.

This week, Colby is trying to repay the favor by advocating for those specialists and others like them on Capitol Hill during the National Association of Children's Hospitals' Family Advocacy Day. He will meet with members of Texas' congressional delegation on Tuesday and Wednesday to tell them about his condition and his lifesaving medical team.

Today, Colby is relaxing with his family and doing some sightseeing. He's seen the Washington Monument and visited the U.S. Bureau of Engraving and Printing. Below is a picture of Colby lighting a candle at the Holocaust Museum.


You can follow the rest of Colby's big adventure this week right here on the blog and through Children's Facebook page and Twitter account.

Legos and Team Sasha

Kids have the most marvelous ways of remembering special things and special people. Sometimes, one toy captures a host of memories.

For instance, Legos were one of my favorite toys as a child. The idea that you could build anything you imagined made for hours of fun with those colorful little snap-together plastic pieces.

Legos became one of Sasha Okhotskiy’s favorite toys too while he was a patient here at Children’s Medical Center. Sasha spent many days making highly complex Lego creations in his hospital room and at home while being treated for a form of brain cancer. Ultimately, Sasha lost that battle in August 2009 after a recurrence of the disease.

A special gift to Children's
However, Sasha’s love of Legos lives on through a special gift to the hospital provided by a group of his friends. They call themselves Team Sasha in his honor and they are a group of 11- and 12-year-olds who grew up playing basketball and soccer with their friend at the Plano Sports Authority. On June 7, the team visited Children’s to give a huge boost to the number of Legos we have to offer patients.

In fact, Team Sasha collected some 400 Lego kits for the hospital in Sasha’s memory, comprising thousands of individual pieces and toted in by the armload. There were so many Lego kits that they took up the Okhotskiy’s entire living room and then grew beyond that, said Sasha’s father, Sergei. The team’s donation was part of the community project SLANT 45 (Service Learning Adventures in North Texas), a project of the North Texas Super Bowl XLV Host Committee designed to have impacts on the North Texas area long after the Super Bowl has concluded early next year.

Watch a video of Team Sasha’s visit to the hospital.



Sasha never stopped fighting
Sasha’s friends said Sasha never stopped fighting even to the last minute and Legos gave him something to occupy his time and his hands. Mr. Okhotskiy fondly recalled a Taj Mahal that Sasha had built and an Eiffel Tower that he and Sasha completed with more than 6,000 pieces to it. Sasha’s favorite Legos had a “Star Wars” theme.

It’s kids like Team Sasha’s members that give me hope for the future, knowing that they loved their friend so much and decided to honor him in such an original way, a way that reflects in part who Sasha was. A toy indeed can capture memories.

Children's hosts a special prom

It’s prom time: fancy dresses, tuxedoes, corsages and lots of fun. For many of us, our high school prom was a pinnacle of our teen years. But sometimes, it doesn’t work out as expected.

Take for example, Children’s Medical Center patient Cheyene Mills.

A year ago, Cheyene, who hails from Tom Bean, Texas, purchased a short, strapless dress for prom night with her high school classmates, but she didn’t get to attend the event. She had a good reason, though: Cheyene had been diagnosed with acute myelogenous leukemia and therefore had a more pressing engagement — treatment at Children’s, where she received a life-saving stem cell transplant.

On May 8 of this year, 16-year-old Cheyene finally got to wear her fabulous little black dress, adorned with pearl accessories. Thanks to some very special people at Children’s, Cheyene and other patients got a prom created just for them.

Our patients got to have this quintessential teen experience because the Child Life team at the Children’s Center for Cancer and Blood Disorders organized a prom for hematology, oncology and stem cell transplant patients ages 15 to 18 and held it here at the hospital. The theme was “Night of the Stars,” complete with star decorations, food, portraits, card games, a DJ and dancing.

The event was sponsored by Heavenly Hugs, a non-profit organization started by the parents of Blakely Johnson, a Children's patient who succumbed to cancer in 1997.

View a video gallery to see Cheyene and her fellow patients’ special night.