Here’s Naomi’s story.
Naomi was born on May 11, 2009 with cardiac and respiratory complications associated with “Trisomy of some kind”. She spent more than a week in the special care nursery, during which time she was diagnosed with four heart defects, as well as Down syndrome. She also struggled to feed, but finally mastered it well enough to be released after ten days. Due to the feeding issues and poor weight gain, she was monitored closely by her pediatrician. The growth of her head soon became noticeably more rapid than the rest of her body. At seven weeks of age, she had an ultrasound done through the fontanelles of her skull. During this appointment, we received the diagnosis of a brain tumor and were told to take her to the local children’s hospital immediately.
According to the neurosurgeon, Naomi’s head couldn’t have gotten any bigger. The medical team was stunned that Naomi was still nursing like a champ and that she hadn’t had any seizures. The tumor caused a blockage of the normal flow of fluid within the brain and spinal column, which created an excessive amount of pressure inside Naomi’s head. This made her unstable for the tumor resection that she needed, so a drain was placed first to remove all of that built up fluid. The next day, Naomi had the resection. She was kept under anesthesia, or heavily sedated, for four straight days. Upon waking her up, I remember how relieved the neurosurgeon was to find that Naomi was able to move all four of her limbs.
Naomi had a few follow-up surgeries to place drains and shunts, one of which remains in her head to this day. She has not been hospitalized since September 29, 2009. She has had no recurrence of the tumor thus far, and is now monitored annually with an MRI.
By about eighteen months of age, it became apparent that Naomi needed more therapy than the county early intervention services program could provide. She gets occupational, speech, physical, feeding and music therapies every week outside of school. The public schools provide occupational, physical, speech, vision and orientation/mobility therapies each week.
Naomi’s brain tumor caused quite a bit of damage including partial paralysis on her left side, partial blindness on the left side of each eye, cortical vision impairment, and cognitive impairment. In addition to these, Naomi also has many of the most common conditions associated with Down syndrome, including nearsightedness, low muscle tone, loose ligaments, reflux and constipation, and developmental delays. All four of the heart defects that she had at birth resolved on their own by the end of her birth year.
In spite of such a long list of challenges, Naomi is one seriously amazing little girl. She surprised us all when she started crawling just before she turned four years old. She’s been working really hard to build up her strength and coordination and at almost seven years of age, is on the verge of walking independently. Both of these accomplishments are practically unheard of in a person with her physical condition. Naomi still struggles with communication, especially with anyone other than her mom, who’s pretty good at interpreting all of the grunts, babbles and other body language. She is keeping up with her class in handwriting skills after learning how to draw lines on an iPad app during therapy. She’s also learning how to use the potty, another accomplishment that was unexpected. In addition to all of the milestones, Naomi has also participated in swimming, horseback riding, soccer and this year she will play baseball with the Miracle League!
If you would like to run in honor of Star Naomi, you will select her team when registering and your team t-shirt color is PINK. Here’s Naomi’s story.
Here’s Jason’s story.
Jason Dean Strauser was a normal, active 10-year-old when he was diagnosed with a very large, aggressive, malignant brain tumor. Our only son and youngest child, Jason, was only 17 years old when he passed away on Memorial Day, May 30, 2011.
Jason was in & out of treatments most of the 7 years that he battled cancer. Jason endured radiation twice, almost constant chemotherapy, gamma knife twice and a stem cell transplant. Jason was not able to attend school with his friends. As a matter of fact, he lost many friends because of cancer! Jason braved many, many new medicines that made us cringe because of all the possible long term side effects. The side effects would bring on even more medical issues for our sweet, kind, intelligent, comical, son. It was a constant roller coaster ride that I do not wish on anyone.
The current drugs used on our children have not been changed for many, many years. With your help, we can increase pediatric cancer research to obtain better meds and finally put an end to this monster, pediatric cancer!
If you would like to run in memory of Star Jason, you will select his team when registering and your team t-shirt color is ORANGE.
Here’s Bryce’s story.
Bryce was born November 12, 2006. No complications, normal delivery, and a very healthy little boy. In 2012 Bryce kept complaining of headaches which at the time we thought he was just asking for attention or sympathy do to his dad Eric and I going through a separation. We went to the family doctor who then referred us to Nationwide Children’s Hospital to see a Neurologist. She had prescribed medication which seemed to be working on and off. During Christmas break in 2012 the boys went to Kentucky with their dad to visit family and Bryce kept complaining of severe headaches and saying the medication wasn’t working. I called the doctor’s office again and we were seen immediately. During that appointment I requested that she order an MRI, we were scheduled for one the following week. I took Bryce to Children’s that evening which he had to be sedated. After his appointment, I was trying to wake him up so I could take him home. The nurse came to me and says Mrs. Stambaugh please let him sleep it off and the doctor will come in and talk to you. I instantly knew something was wrong. The doctor came in and told me that Bryce my 6-year-old had a brain tumor which was located on his hypothalamus. January 9th was the worst day of my life. From that day we went to see a Neurosurgeon who confirmed that yes indeed it was an Adult Teratoma Brain tumor. Bryce had to be seen by an Endocrinologist to make sure his growth and development was OK since the tumor was also near the pituitary gland. Come to find out during all the testing the only thing that is wrong with Bryce is that his body doesn’t produce a chemical called Cortisol and he has to take a supplement 3 times a day.
Recently Bryce had a dizzy spell at school and was taking to the doctors and as a precaution, the doctors did an MRI to make sure everything was OK. Unfortunately, they found another brain tumor but this one is on his Thalamus which is 5×5 millimeters and they also confirmed that the original brain tumor has grown to the size of 13×13 millimeters. We were referred to a pediatric Neurosurgeon at the Jeff Gordon Children’s Hospital who confirmed that they are noncancerous tumors and we are just going to monitor the brain tumors every 6 months. He is still to take his medication but the best part is there are absolutely no restrictions and he is able to be as active as he wants.
If you would like to run in honor of Star Bryce, you will select his team when registering and your team t-shirt color is BLUE.
Here’s Alex’s story.
Alex was an honor student at Marysville High School, a member of the Cross Country & Track teams and an avid bowler for the Youth Bowling League. He worked at Marysville Lanes and loved his job and interacting with the other bowlers. He was a dedicated student and hard worker but most importantly, Alex was a caring, funny and loving person and the best son a mom could ever ask for!
Alex was diagnosed with Brain Cancer on his 16th birthday after experiencing severe headaches. His tumor was inoperable so he began 7 weeks of Proton Beam Radiation treatments every day in Bloomington, Indiana. After returning home he had a severe seizure that caused a stroke and spent 1 month in Children’s Hospital recovering. He went from not being able to walk to jogging down the hall. All he wanted to do was run with his team again. He was able to walk with his mom and sister in this very 5k for the last time in 2010 before he passed away on Aug 31, 2010. Alex’s wonderful sense of humor, positive attitude, and beautiful smile are in our hearts forever.
If you would like to run in memory of Star Alex, you will select his team when registering and your team t-shirt color is GREEN.
Here’s Kohlson’s story.
On February 13, a local 1-year-old boy, Kohlson Edwards, son of Trystan and Taylor Edwards (graduates of Fairbanks and Jonathon Alder via Tolles Technical School), had emergency surgery to remove a brain tumor. On February 15, he was diagnosed with Atypical Teratoid/Rhabdoid Tumor (ATRT), a very rare form of pediatric brain cancer. Due to the rareness of this cancer, Kohlson will start his chemotherapy at Nationwide Children’s Hospital in Columbus but then will need to travel out of state to receive more specialized treatment that this form of cancer requires. On March 10, Kohlson began his first round of chemotherapy and so the next part of his journey begins…
“We have no doubt that the love, prayers and hope will flow, as this amazing community comes together to lift up and support Kolhson Edwards in his fight for his life” ~ Amber McKenzie, event co-organizer. Be sure to check out additional event details on our “Cares for Kohlson” FB event page: https://www.facebook.com/events/1349088575166629/
If you would like to run in honor of Star Kohlson, you will select his team when registering and your team t-shirt color is RED.