Kids' Health Blog

Paige and Jason Schram, parents of Owen, will participate in the HeartBeat 5000 on Saturday, June 23. They have named their team “Owen’s Orange Monkeys” after a toy their son received from his grandmother. The toy has distracted Owen and made him happy through some difficult times in his young life!

While pregnant with Owen, Paige Schram was referred to Children’s by Abbott Northwestern Hospital’s perinatal program after an ultrasound at 20 weeks showed Owen had a heart defect. Even before he was born, his parents Paige and Jason knew he had Hypoplastic Left Heart Syndrome, or HLHS, an underdeveloped left side of his heart. Knowing that Owen would be born needing heart surgery and would die in a few days without treatment, a stunned Paige and Jason were able to meet Children’s cardiology team and understand the surgery and treatment plan prior to the birth of their son.

Paige had a C-section at Abbott, and Jason accompanied Owen through the tunnel to Children’s. Jason raced back and forth between Abbott, where Paige recovered, and Children’s where Owen was being cared for in the NICU before his open heart surgery on his third day, as his mom was discharged from Abbott.  Owen was at Children’s for 46 days recovering from the surgery and complications before his first visit home.

His second of three necessary surgeries took place when Owen was 5 months old, a bit earlier than expected as his oxygen levels began to drop. His second recovery lasted 56 days. He will need his final surgery when he is 3 years old. Owen’s surgeries are re-routing his circulation to the right side of his heart and need to be spaced out to accommodate his growth and tolerance of the surgeries.

During his first winter, Owen didn’t go to the grocery store with his mom or out to the playground with his dad. He stayed home and has been lucky to stay healthy – free of colds, ear infections and other illnesses. But his parents look forward to when he joins other children who go to school, play groups, and sleep in their beds at home, even though they love Children’s!

Later this month, Paige and Jason will give back to the hospital. After reading about HeartBeat 5000, our annual 5k walk/run benefiting kids’ heart health, on our Facebook page, Jason knew his family needed to create a team for the event. The family is excited to raise awareness and funds for our life-saving cardiology programs.

To support Owen’s Orange Monkeys, click here.

Owen’s Orange Monkeys from Children’s of Minnesota on Vimeo.

This is a guest post by Tanya Juarez-Sweeney, Child and Family Services Project Specialist at Children’s, who, along with her husband and son, shaved her head during the St. Baldrick’s Foundation head-shaving event, hosted at Children’s in Minneapolis, in March.

“Hello, my name is Tanya Juarez-Sweeney, and I’ll be your volunteer tour guide today. When I’m not volunteering at the art museum, I work at Children’s Hospital just a few blocks from here, and that is why I have this awesome new haircut. We had a celebration for some of our cancer patients, and they shaved my hair!”

This has become my standard greeting for the elementary school tours I lead at the Minneapolis Institute of Arts — one of Children’s community art partners. It has been the best part of my post-shave experience, as it offers many teachable moments. Shaving my hair has also been a lot of fun. Usually once a day I look into a mirror and sing “Nothing Compares to You” by Sinead O’Connor. I do it because I can. It’s a benefit of my new hairdo.

Going from having super long hair to being bald gets attention. It gives me the opportunity to brag about our organization and the amazing strength of the hematology oncology kids we serve. These opportunities are everywhere – at restaurants, gas stations, and in my neighborhood. With every encounter, there’s a chance to explain my new hairdo. These sharing moments are contagious and inspiring to those around me. I feel pride in paying it forward.

During the month following the hair-shaving event, I volunteered at my neighborhood elementary school. It was perfect timing. I was able to engage the students in discussions about the many ways we can give back to the community and help others. As part of a class art project, the children made Tzedakah boxes. We discussed how the boxes are used to collect money to give back to those in need, but there are other ways to help others, like shaving your head or raking a lawn. A few weeks later, I received a large envelope full of thank-you notes from the kids that included their ideas for their Tzedakah box money. Many were saving their money for Children’s.

The St. Baldrick’s Foundation event on March 29 raised nearly $20,000 for pediatric cancer research and was a celebration of the bravery and courage our patients have. Never have I felt such joy as I did that night. I’m sure I had a permanent smile plastered on my face the entire evening.

After leaving the hospital, I posted the following on Facebook:  “Shaved by 2 patients tonight, and feeling joyful. As I left the hospital a light rain started. What a feeling to feel rain on the top of your head! It was like little tickles or kisses from nature. I can’t help but feel that the honored kids who couldn’t be there tonight were giving me a little present.”

To read Tanya’s first post about why she shaved her head, click here.

Shay, on the right, with her sister Dru

When Shay Dschaak was five days old, she had her first of many surgeries at Children’s Hospitals and Clinics of Minnesota.

During the first year of her life, she spent several months hospitalized for various heart procedures. Now, the 2-year-old is considered “repaired,” her mom, Sarah Dschaak, said. “It was a crazy start, but she is the most feisty, little red-headed girl. She is so full of life,” she said.

And Sarah is so thankful. That’s why she, her family and friends will travel nearly 12 hours from their North Dakota town to Minneapolis for the HeartBeat 5000 on June 23.

“I decided this is a great thing, and it’s one of the ways I can give back to Children’s after what they did for my family,” Sarah said.

In its tenth year, the HeartBeat 5000, held at Father Hennepin Park in Minneapolis, will bring together patients, families, staff and the community to celebrate the daily miracles at Children’s. Since its development, the event has raised more than $1.4 million for the hospital’s cardiovascular program and Family Needs Fund.

The event has grown considerably during the last few years. In 2010, 47 teams participated and last year, there were 80. So far this year, 99 teams have registered.

Sarah’s team, RedHeaded Hearts, has raised about $7,000 to date. She organized a Cinco de Mayo party, complete with bingo games and a live auction, which generated about $6,000. Her team has also raised money through their website.

“If it wasn’t for Children’s, we wouldn’t have Shay,” Dschaak said. “[Participating in HeartBeat] is the least I can do for what they did for Shay.”

Julia

Team Julia’s Beat will make their fifth appearance at the race. The team draws big numbers. In 2010, they topped all teams with about 80 members and last year, they raised the most money — approximately $5,400.

Team captain and proud mom Kelly Olejar hopes for another strong team showing this year.

“Everyone has grown to love it. It doesn’t have to affect them directly,” she said.

Kelly’s oldest daughter, Julia, was born with a heart defect. At seven weeks, she had surgery and ended up spending the entire summer in the hospital due to complications.

Julia, now a healthy 5-year-old and the star on the team, participates in the event. “She calls it the big walk,” Kelly said “She’s kind of getting it that it’s about her.”

Kelly also tries to give back through volunteering at the hospital and helping other families. “We count our blessings,” she said. “I don’t know big people in big places, but I can do something to give back.”

Returning for the second time to the HeartBeat 5000 is Moms on the Run, a running program for women throughout the Twin Cities.

Last year, an estimated 40 people affiliated with Moms on the Run participated in the race. Founder and CEO Karissa Johnson says she expects a bigger turnout this year.

The group participates in one race event every month, Karissa said. The family-friendly environment, central location and beautiful urban setting at the HeartBeat 5000 are among its highlights, she said.

“We’re always looking for an event with a good cause to support,” she said. “I just felt that children’s health was something we could all rally around.”

Want to get involved? Sign up today! Join a team, start your own or run as an individual! For more information, click here.

This is a guest post by Tanya Juarez-Sweeney, Child and Family Services Project Specialist at Children’s, who, along with her husband and son, will be shaving her head during Thursday’s St. Baldrick’s Foundation head-shaving event, hosted at Children’s – Minneapolis.

It was a typical day in Star Studio when someone knocked on the door. That someone was Dr. Kris Ann Schultz, one of Children’s pediatric oncologists. This chance encounter would lead me to the decision to join the St. Baldrick’s Foundation fundraiser taking place at Children’s on Thursday, March 29.

“How many women do you have signed up to shave?” a coworker asked.

“None yet. It is harder to get women to sign up,” Dr. Shultz answered.

“I’d shave my head for that cause,” I chimed in.

“If you do that, I’ll donate $50,” my coworker replied

“If you do it, I’ll donate $50 too,” Dr. Schultz added.

And so it began.

I spent a few days thinking the decision through, bouncing it off people and considering their opinions. Amusingly, a few people offered to donate to keep me from shaving. Several people shared their stories of someone they knew who was a patient at Children’s; touching my heart and reaffirming the immense pride I have in the work we do here.

Ultimately it came down to the question “Why wouldn’t I?” Would I look too scary to lead the children’s field trips at the Minneapolis Institute of Arts where I volunteer? Would my own children get teased at school about their mother’s new look? What would they think? Exactly. What message would I send my children and the children I volunteer with if I did this? A darn good one, I decided.

As a former Army Staff Sergeant, I believe in leading by example; walking the walk. I’m not only sending a message to the children fighting this disease that I stand by them and support them, I am creating teachable moments for those around these families, and raising money for research to boot; win-win-win.

I have been asked a plethora of questions:

“What do your husband and kids think?” My daughter and son think I will look like a ‘cool punk girl.’ In fact, my son thinks it is so great, he has signed up to shave with me and my daughter donated her hair to Locks of Love.

My husband is also a Children’s employee. He tells me I’ll be “striking” and I know that he loves me in part for the fact that I am not superficial, but I know he’ll miss these crazy locks of hair. How lucky am I that he “gets it.” Not only does he get it, he’s also going to shave with me. What an amazing life partner I have.

 “Are you going to wear a scarf/hat/wig after the shave?” Sure, maybe a hat once in awhile. I like hats. But doesn’t that defeat part of the purpose? I’m raising money for this cause but also sending a message to the hematology/oncology kids I see every day. I care. I stand by you. I admire your strength. And thanks for showing me how to rock this look!

“Do you think you might cry when they shave your head?” If you have looked at any of the photos on the St Baldrick’s website, you are bound to come across some tears. For a few, they may be tears of loss from the attachment they have to their hair. For many I think the tears are symbolic of their support and dedication to this cause.

Will I cry? I’ve thought about this. My head will either be shaved by my co-worker (who will be MC’ing the show as our beloved TV character, The Dude) or by a patient. If a patient does the shaving, I’m pretty sure I’ll shed a few tears.

I’ve been hearing a lot of feedback about how brave I am to shave my head for this cause. But I am not the brave one; the kids who fight this disease are.

Recently, I heard a mother express concern about her 9-year-old daughter returning to school and getting teased by her classmates because she not only has no hair, she also has a large scar from her surgery. This girl touched my heart. Her bravery is bigger than anything I can imagine.

Anytime something unjust happens to a child, it fills me with sadness and helplessness. What can I do? What is in my power? Perhaps there isn’t much I can do. But maybe the smallest thing, like shaving my head, can make a statement that I care. And if it raises money for children’s cancer research in the process, then what a great thing.