They no longer have a voice... but we do.
Nate Andrew Elfrink
Nate was only 20 months old when we took him to Children's Hospital, thinking that he had a mild concussion from a minor fall. Little did we know that the symptoms he had been having were, in fact, not from a concussion at all. We were devastated to find out that Nate was suffering from a pediatric brain tumor. His tumor, an anaplastic ependymoma, was about the size of a lemon. Three days later, he had surgery to remove the tumor. All but a small portion of the tumor had been removed. Nate had a small piece of tumor that was nestled up against his brain stem. After Nate recovered from surgery, he endured six months of chemotherapy. He was too young to have radiation on the brain, so we did the chemo in hopes of keeping the tumor at bay until he was three. Before Nate started his chemo, his own stem cells were harvested and sent to OSU to be stored. After he completed his chemo, he underwent a stem cell transplant, receiving his own stem cells. Nate was fortunate, in that the chemo did what it was supposed to do. It kept the tumor at bay until he was three. Unfortunately, exactly two years after his initial diagnosis, the tumor started growing again. Nate underwent a second surgery followed by 33 radiation treatments. Once again, a small portion of Nate's tumor could not be removed because it was too close to his brain stem. We were confident that the radiation would do the trick.
We were wrong. One year later, the tumor started growing again. This time we decided to try gamma knife radiation, also known as surgery without the knife. This procedure is a one time radiation treatment that sends many low dose radiation waves that all meet and converge on the tumor. Once again, we were confident that this would do the trick.
Once again, we were wrong. Nate went a little over a year before the tumor started growing again. Not only were we devastated once again, we were also told that Children's Hospital was out of options for Nate. We immediately had Children's obtain a second opinion from St. Jude's. Good news, St. Jude's was currently doing re-radiation on the brain. We headed for Memphis. In December of 2008, Nate's third surgery was a huge success! The surgeon removed all of his tumor! We were cstatic! Nate followed up with 30 more radiation treatments on the brain. We headed home in February of 2009. We returned to Memphis in March for a follow up MRI that turned up clean. Once again, we were sure that Nate was going to be ok. Once again, we were wrong. Nate returned to St. Jude's for another follow up MRI in June. Bad news. The tumor had returned. As there is no rhyme or reason for Nate's particular type of tumor, there is also still no known cure. We tried a couple of clinical trials involving some different types of chemo, but the tumor kept growing. In November of 2009, we told Nate for the first time that there was no cure for his cancer. We made the announcement that Nate was losing his battle with brain cancer. Nate succumbed to his tumor on February 26, 2010.
Nate spent six of his seven and a half years fighting for his life. Unfortunately, there are many, many other children that have lost, and are losing their battles with brain cancer as well. Not only have we watched this disease take the life of our young son, but we have also met many other children, both in Columbus and Memphis, that have lost their battle as well. Our family supports the efforts of the Nationwide Children's Hospital, as it is a dream of ours to see a cure for this terrible childhood disease before we too, are with our son once again.
Violet Mariah Baier
Violet was diagnosed with a brain tumor Friday, November 13, 2009. She had been battling an undiagnosed sickness since March 2009. Five days later, Violet had brain surgery to remove her tumor. Unfortunately they were not able to remove tumor but they were able to get a biopsy. Violet's tumor was very large and comparable to a baseball so this left her in a dangerous situation. We did find out from the biopsy though that Violet's tumor is cancerous and is known as a PNET Tumor (Primitive neuroectodermal tumor…aka..the devil). She started chemo November 24th. She went through 5 rounds of strong chemo and it was able to shrink her tumor to half the size. On May 13th, 2010, she had another brain surgery and the doctor was able to get almost all of the tumor. We were hoping it was all gone but we were still very satisfied. With the tumor being almost gone, we were preparing for a stem cell transplant with radiation to follow. The doctors were very happy as well and believed the transplant and the radiation would take care of the rest.
We immediately started some pre-testing preparing her for her transplant. Everything was going great until the spinal tap, where they found some cancerous cells. The doctors were thinking this was just some cells from her recent surgery and that it didn't mean anything. Then we did another MRI Wednesday, June 2nd and found out that the cancer had spread down the back of her brain and her spine. We also found out that the tumor that was just almost removed was already growing back in just 2 weeks. This meant the transplant was no longer an option. So we had to start a new plan.
She went through 6 weeks of very strong radiation instead. On August 27th she had an MRI, the results showed the cancer was gone. We were very excited but still skeptical because we had seen before how fast the cancer comes back. Violet started back into school and I headed back to work hoping to put this all behind us. The doctors had Violet taking some chemo at home just to make sure the cancer stayed away. Within 2 weeks of having this MRI, Violet started vomiting off and on. We thought she had caught a virus, then we thought maybe it was the chemo, but after a few weeks of trying to come up with any other answer than "cancer" we had another MRI done. This MRI had confirmed our biggest nightmare. Violet's cancer was back and spread through her brain and spine. We were left with only one choice at this time, to try and slow the cancer down. We gave Violet chemo that would cut off blood supply to the cancer and keep it from spreading or at least slow it down. In the meantime praying for a cure...a miracle.
Violet lost her precious life December 7th 2010 at home with her family. Although she was only 7 years old she was the bravest person I have ever met. She never once through this whole experience felt sorry for herself or acted scared. She fought this with a smile on her face and a spunkiness that I couldn’t believe. Violet made sure to prepare her family and leave them with a sense of peace that she would be alright and was going to heaven with her grandfather. We miss Violet every second of the day and no one will ever fill her shoes. We are so proud to have had such a wonderful, thoughtful, amazing little girl who was the center of our family and so terribly sad that her time her on earth was taken way to soon.
Written by Violet’s mom, Robin
Erica Reagyn Semler
Until October, 2005, Reagyn was a pretty healthy 5 year old; little did we know about the path in which we were about to go down.
Towards the end of October Reagyn started getting sick with what the Doctors, as well as we, thought were flu symptoms. She started having episodes of an onset of a headache in the morning followed by vomiting. Later came the complaints of a stiff neck, then in early November she was having some eye muscle problems. We were referred to an eye specialist but had a four week wait, not realizing that there was a very serious problem. On the evening of December 14th, Reagyn was seen by the eye specialist who immediately noticed the pressure in her optic nerves. He would not let us leave his office until he had contacted her pediatrician to set up an appointment for a MRI the next day. Reagyn had a MRI on the morning of December 15th and those results changed our lives forever.
Hearing that your child has a brain tumor is something that no parent ever wants to hear. Within minutes of hearing the news Reagyn was admitted to Children's Hospital. It was suspected that Reagyn had a brain tumor which was blocking the flow of cerebral spinal fluid causing Hydrocephalus. Doctors were planning on taking Reagyn into surgery on Monday, December 19th, however, her conditions worsened and she was taken into emergency surgery on the morning of Friday, December 16th. A VP Shunt was inserted into Reagyn's head to drain the fluid off of her brain and to reduce the pressure and swelling. Reagyn was released from the hospital on Sunday, December 18th.
We met with the oncologists in February and were given the news that surgery was absolutely not an option for Reagyn because of the location of the tumor. It was believed that Reagyn had a brain stem glioma, category 1, which is located in her brain stem where all of her motor nerves are. The tumor is also slightly into the Thalamus area. At that time the doctors believed that Reagyn's tumor was benign but they didn't have any way to really know. Radiation could have been done at that time, however because of her age the Doctors said that there would be some extent of brain damage and there was no way to know to what degree it would be. Also, with radiation the doctors told us that it was a one time deal meaning that once we do the complete radiation treatment she can never have radiation again.
Eric and I decided to put all treatments off for as long as we could. We opted to put all of our faith and beliefs into GOD and to let him take care of our little girl. Reagyn had follow up MRI and CT Scans every three months for the past five years. June 5th, 2009 we were awaken at 4am to Reagyn complaining of a headache followed by vomiting. We took Reagyn to Children’s and by the time we got into a room she was unconscious. She was rushed into emergency surgery where doctors found that her shunt had malfunctioned. Her shunt was fixed and she was released from the hospital the next day.
Reagyn continued with her three month scans and then on September 7th, 2010 we got the news we had hoped to never get…Reagyn’s tumor was growing and was changing stages. On September 9th it was confirmed and we began to plan our move to VA for her Proton Radiation Treatment. November 9th Eric, Reagyn, Avery and I moved to VA leaving Baylee, Codey and Dylan behind in Ohio with our parents so they could continue with school. Reagyn started Radiation and Chemotherapy treatments on November 16th. She went through 33 days of radiation and 42 days of chemo. In December a new tumor branched off of the original one leaving us with now two areas to fight. We were able to return home on January 5th. Reagyn was given a month break before starting her next round of chemo which began on February 3rd. She continued to take chemo treatments five days a month for the next year.
Last August we were given the news that her tumor was reacting very well to the radiation and chemo treatments and had shrank approximately 80%. February 7th Reagyn’s MRIs in December and February showed that her tumor wasn’t shrinking anymore but it had remained stable. Although this wasn’t exactly the news we had hoped for, we are very thankful for the shrinkage we got and the stability of her tumor. Her oncologist surprised us at her Feb. appointment with the news that she was finished with chemo, she did not have to do her scheduled treatment in Feb. We were all very excited and overjoyed at this news. Reagyn’s body has been growing very weak and tired from all of the treatments over the past 14 months. You always hear how hard these treatments are on a person but can’t really imagine until it is right in front of your very eyes.
Reagyn is so amazing and has been the glue that holds all of us together through this journey. Even on her worst day Reagyn carries a smile upon her face. Childhood cancer is a journey with many curves along the way. Family’s on this journey have to take each day as it comes; remaining strong, hopeful, always believing, and wearing a smile on their face. One moto that we have been blessed to learn is “Live In The Moment; Play In The Moment”. These families as well as the little warriors themselves need our continued help to raise money to help find a cure for childhood cancer. Our family would like to thank each and every one of you for coming out and supporting such an important cause.
I was 19 years old when my life changed forever. When most girls my age were moving out of mom and dad’s, going to college, and starting off their lives as young adults, I was about to become more dependent on others than I had ever been.
For about two weeks prior to my diagnosis I was feeling very odd. It is hard to describe the symptoms that I was having, but when people ask me I usually compare it to being on a boat. I felt off balance, dizzy, and somewhat nauseous. I knew that something wasn’t right. I went to the doctor and she ordered an MRI. At the time I had no idea what an MRI of my head would be looking for. My doctor didn’t explain any reason for the test; she just said it was a precaution.
I had the MRI early on a Thursday morning before going to my political science class. Thirty minutes into the lecture, the doctor’s office called me. It was unusual to receive a call with results so quickly but I still didn’t think much of it. The doctor wanted me to come in after class.
My mom met me at the doctor’s office so that I wouldn’t be alone when she read the results. My doctor entered the examination room with a very strange look on her face. She held a sheet of paper in her hand and slowly began reading what it said. The only words that I really remember her saying are: large mass, infiltrating, brain stem. Shock and fear set in immediately. My mom took me to The Ohio State University Medical Center, now The Wexner Medical Center, for treatment.
I was admitted to the James Cancer Hospital where my surgeon Dr. McGregor explained to me the types of surgeries that I would need to have within the next few days. First, I had a third ventriculostomy which created a pathway for the cerebrospinal fluid to exit my brain.
After going home and thinking for a long time I realized that I didn’t want to live in anger and fear. Reagyn surely wasn’t. She was strong, and lived every day to the fullest. I wanted to be like her. Even though she was so much younger than me, I looked up to her.
Day by day my attitude changed. I started to realize that I wasn’t alone. So many children and adults are diagnosed with brain tumors. So many lives are cut short. I am a lucky one. I have been given the chance to continue living my life.
Dr.Cavaliere advised my family and I that we should continue to monitor the tumor with MRI’s every 3 months to make sure that it was not growing or changing shape. Appointment after appointment I was given the good news that the tumor was not changing. After about three and a half years my tumor has continued to remain stable. Within that time I have been blessed to be able to earn an associate’s degree, work part-time, and enjoy life with my family and friends. In May I will graduate from The Ohio State University with a bachelor’s degree in Human Nutrition. My goal is to become a Registered Dietitian working with the elderly population.
I’m so happy to share my story with the world in order to raise awareness about pediatric brain tumors. I believe in the mission of the Pediatric Brain Tumor Foundation and Rockin’ on the Run. I hope that my story inspires others to support our cause so that one day we can find a cure for pediatric brain tumors!