Giving News & Highlights
John and the Dude
One day, John Gegen was a 5-year-old boy battling flu-like symptoms. The next, he was a 5-year-old boy with a potentially grave diagnosis, stage IV, high-risk neuroblastoma.
Neuroblastoma is a malignant tumor that usually occurs in kids 5 or under.
“In the back of my mind, I knew we were in big,” said his mom, Shelly Gegen, of being referred to Children’s for more answers. But, she never expected her baby boy, the youngest of three, would have advanced cancer.
On the day they were sent to Children’s Hospitals and Clinics of Minnesota, John got his diagnosis. He didn’t leave the hospital again for 20 days. While the news was devastating, the Gegens knew they were in the right place to receive the best care for their son.
Since his diagnosis, John and his family have given back to Children’s to help make sure other kids get the same kid-centered, star treatment he received and continues to get today.
From day one, his family was made to feel like treating John was a team effort. His comfort and care were always a top priority, too, Shelly said.
And John was treated like the active, loving 5-year-old boy he was, not a sick kid with cancer whenever he watched Star Studio, Children’s in-house television program.
“It was all about being a kid; it wasn’t about being in a hospital,” Shelly said.
During his multiple hospitalizations throughout the first year of his diagnosis, he looked most forward to watching the Dude on Star Studio and interacting with the show. For a long time, he had his mom call into the show. It wasn’t until John’s last few days in the hospital that he worked up the courage to on his own.
The Dude played Xbox with John. Another memorable moment was when Kevin Rotty of Rockin’ with Rotty fame played John’s version of “Juke Box Hero” on his show. “Juice Box Hero.”
“(Those distractions) took you away from what you were dealing with,” Shelly said.
John no longer has frequent hospital stays, but he stops by Star Studio every chance he gets when he’s at Children’s for appointments, his mom said.
Since John’s diagnosis in April 2012, he has undergone chemotherapy, radiation, a stem cell transplant and antibody therapy, a painful treatment that acts like a smart bomb to zip hidden cancer cells.
John currently takes DFMO, a trial drug to help prevent relapse. He goes to the cancer clinic every month for lab tests and every 12 weeks for scans. He hopes to finish taking DFMO next summer.
He and his family have been so grateful throughout their journey that they’ve given back to Children’s not once but twice. Last year, the Gegens delivered toys for Children’s patients so they would have some joy at Christmas time. This summer, John sold soda and his toys, some of them still in packaging, at a garage sale and raised $260. He donated the money to Star Studio.
They’re already thinking about how to give next.
“We’ve been treated like nothing but the best by everyone we’ve come in contact with,” Shelly said.
If you would like to support Children’s and families like John's, you can make a one-time donation or a monthly donation to help all year long. Your support will provide services like the Star Studio, which provided kid-friendly, interactive programming while John was in this hospital.
Taylor one month before being diagnosed
I looked forward to my sophomore year in high school, when I was finally going to join my older brother in the same school again. He was a senior, so it was my last year with him before he went to college. I wanted to embarrass him in the hallways and jump on his back when he least expected it. We were excited about being in the fall musical Bye Bye Birdie together.
Just before school started, I began having headaches. Then, the left side of my face became numb. At the beginning of my sophomore year, on my brother’s 18th birthday, I learned that I had cancer. The tumor in my Sphenoid Sinus was pushing against my optic nerve.
My plans – our plans – changed.
I had been a competitive soccer and volleyball player but was unable to participate in either sport due to treatment. I was too weak and fatigued. I missed out on the intense tournaments and the funny things coaches yell when they’re upset. I wanted to join my brother in marching band for one last season. But, my season was cut short.
I got to see my friends who visited me at the hospital and at home. I would see my friends at school when I was well enough to go. I would hear girls complaining about how they ate too much when they’re as skinny as twigs. At least they were able to control what they ate. During radiation I had terrible mouth sores. If it weren’t for my dad force feeding me, my mom making late-night grocery store runs, and my grandma flying in to cook food for me, I would have had a feeding tube. I was terribly underweight while girls were complaining about how they looked, when they looked fine. They would also complain about their hair and makeup while I was bald. I’m not a normal teenage girl anymore. I understand that everyone struggles with the way they look in their own way, but I was stuck with the way I was.
Taylor the first time she shaved her head
When I turned 16, I wasn’t able to get my driver’s license because I never had the chance to finish my behind-the-wheels class. What was the point of getting a license anyways? I was bedridden and too drugged up to focus on the road.
The following summer my parents bought me a denim blue Volkswagen bug convertible. I took my driver’s test with my roof rolled down and my baldhead shining in the sun. I passed.
I started my junior year bald. I got made fun of, but I also held people as they cried. Being bald at school is shocking for most people. It was a big transition for me to go from hospital stay after hospital stay to the high school hallways. Again girls fussed about their hair and the way they looked. But I held my head up high because “Bald is Beautiful.”
Now I’m a senior with an (almost) full head of hair. I’m not as athletic as I used to be, but I do the best I can. I can keep up with my friends now, and I carry the banner in the marching band. I’m the same girl I was starting my sophomore year, I just have a different perspective on life. I’m a cancer survivor.
I’m not sure what’s next for me. I want to become a pediatric oncologist when I’m older so I can save lives, just like mine was saved. I’m not sure where I want to attend college yet because I’m just not physically and mentally there yet. My family never left my side during treatment, so how am I supposed to leave them, without a care in the world, and go to college? Maybe I’ll take a year off after high school to catch my breath. I think my family and I deserve a break.
If you would like to support Children’s and families like Taylor's, you can make a one-time donation or a monthly donation to help all year long. Your support will provide services like the Child Life experts, who introduced Taylor to Beads of Courage; the Family Lounge, which allowed Taylor to meet other kids with cancer and spend time away from her room; and Research, which has lead to great medical discoveries that assist in the fight against cancer.
Join us at the Pine Tree Apple Tennis Classic (PTATC) for a fun-filled weekend to benefit cancer research at Children’s. Enjoy a mixed doubles tennis tournament from Thursday, Aug. 7 – Sunday, Aug. 10, and then gather your friends and family to participate in Pine Tree Runs, a chip-timed 5K walk/run and 10K. Your support will make all the difference in finding a cure for pediatric cancer, and helping kids get back to their rightful place of happy.
Kids like Ike, who was diagnosed with cancer in 2013, right before his fifth birthday. His pediatrician recommended that his parents, Chelsea and Chad, bring Ike to the emergency department at Children’s after continued declining white blood cell counts and a stubborn rash.
Following many tests and exams, Ike underwent a bone marrow aspiration, which showed that he had B-ALL Leukemia.
Ike’s diagnosis has been life-changing for his family. His mom, Chelsea, says it has shown them the “true meaning of living,” given them more purpose and brought them closer.
“We fight so these children no longer have to endure these horrible treatments and so that no parent ever has to hear the life altering words of ‘Your child has cancer,’” Chelsea said.
Ike is in the maintenance phase of treatment, and his care team hopes he will finish in July 2016. While his family counts the days until treatment is over, it hasn’t kept him from playing hockey and baseball, being outside and playing with his sisters and spending time with his family. He’s full of energy.
“We feel incredibly lucky and blessed that even though Ike has cancer, he was diagnosed with a highly curable form and he is handling his treatments like a true champ! We know that his prognosis could be in a much different place and for that, we are truly grateful,” Chelsea said.
We’re grateful, too, to celebrate alongside Ike and his family. As an honored patient at the PTATC, Ike and many more Children’s patients will be at Life Time Fitness at White Bear Lake this weekend. We encourage you to join them, their families, and other supports of cancer research at Children’s. Learn more at childrensMN.org/PTATC
Ella and Parker making their donation!
Some people celebrate their birthdays with gifts.
And then there are people like Ella and Parker Reese. They celebrated with generosity.
In lieu of gifts, the 8-year-old twins asked their guests to bring cash donations to their birthday party. The response was big. As in $525 big.
“We were shocked and so excited to see the final total on what was raised,” said their mom, Melissa Paasch.
Ella and Parker got an early start in life at Children’s, so they wanted to give back.
“What better way to celebrate their birthday than by giving back to a hospital who has given us so much,” Paasch said.
Ella and Parker were born at 32 weeks after their mom developed preeclampsia. She was diagnosed at 28 weeks and hospitalized on bed rest at 30 weeks. That’s when she and her husband were introduced to the NICU, where a neonatal physician took time to speak with them, answer questions and “prepare” them for the premature delivery of their twins.
On March 17, 2006, when their mom’s preeclampsia elevated, her physicians decided it was time to “welcome these little folks into the world.”
Since their arrival, Ella and Parker have been hospitalized off and on for various reasons.
“Dealing with a sick child is emotionally and physically draining, but at Children’s you have peace of mind and confidence that your child is getting the absolute best care possible,” Paasch said.
Will Ella and Parker celebrate with Cake & Candles again? That’s up to them, Melissa said, though she’s confident they want to continue making an impact in some way.
“Getting your children and their friends involved in such a worthwhile fundraising cause serves as an opportunity to educate others about the hospital while instilling the philanthropic spirit into all who donate,” Paasch said.
Do you want to celebrate your birthday by making an impact at Children’s? Learn more about our Cake & Candles Club here.
Be a part of the biggest event at Children’s and help make a difference for many of our cardiovascular patients. Heartbeat 5000, a chip-timed 5K run/walk takes place on Saturday, June 21 at the scenic Father Hennepin Bluffs Park in Minneapolis. More than 2,900 people are expected to participate with teams of friends, family and coworkers coming together to support this great cause.
The Petersons are some of the many who will be there. Beth and her husband, Marshall, first learned about the event two years ago during an extended stay at Children’s. They saw flyers in the hallways following surgery for their son, Miles, who was diagnosed with a congenital heart defect soon after he was born. “We were overwhelmed with gratitude over the great care we received that we were compelled to get involved,” Beth says.
Beth decided to take her experience at Children’s to the next level. She now leads the employee team for Medtronic – a sponsor of the event since it first began 12 years ago. “I am passionate about supporting the cardiovascular care center because of the incredible gift they have given my family. Plus rallying my fellow coworkers around this cause is great fun!”
Working with fellow employees and attending the event with Marshall, Miles and their daughter Piper, has given her the opportunity to connect with other families who have had similar experiences. Through her efforts, Beth continues to meet people who want to share their stories and support the cause.
Miles is now two-years-old, and continues to receive follow-up care through regular visits to the Children’s Heart Clinic. Proactive and concerted care, a cross-team collaborative approach and extensive knowledge of Miles’s rare defect have all helped the family understand his condition and alleviate any fears.
“It is scary to learn that your child has a congenital heart defect. Children’s has the experience, staff, facility and outcomes that allow my family not to worry so much about tomorrow.”