Our Warriors, who have and will never fight alone
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.
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. Reagyn had an 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 December 19th, however, her conditions worsened and she was taken into emergency surgery on the morning of 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.
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. At that time the doctors believed that Reagyn's tumor was benign. Doctors discussed radiation therapy but explained to us because of her age there could be some extent of brain damage and it was a onetime deal meaning that once we do the complete radiation treatment she could never have it again.
Eric and I (Reagyn's dad and mom) 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 following 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.
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 that she would need to start treatment and we began to plan our move to VA for her Proton Radiation. November 9th Eric, Reagyn, Avery and I moved to VA leaving Baylee, Codey and Dylan (Reagyn's siblings) 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. 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.
Reagyn’s tumor reacted very well to the radiation and chemo treatments shrinking it approximately 80%. Reagyn has developed several new symptoms over the past year but her tumor remains stable. Doctors continue to watch her tumor every six months and we all continue to pray for a cure.
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. Families on this journey have to take each day as it comes; remaining strong, hopeful, always believing, and wearing a smile on their face. One motto 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 support 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."
"Garrett was diagnosed with a pediatric brain tumor in 1996 after suffering a Grand Mal Seizure when he was 16 months old. His tumor was diffused through his optic nerve, making it impossible to remove without leaving him blind. Garrett had a second surgery in 2011 to remove a large portion of the tumor after he began having petit mal seizures. Garrett was diagnosed with a Grade II Astrocytoma. Garrett is currently on anti-seizure medication and has an MRI every year to ensure there is no growth in the tumor.
He began having strange “dizzy spells” in 2010. These began to increase and he described them as feeling as if he were frozen in time. He said he couldn’t move or think when one of these episodes came about. After several months of his doctors changing the dosage of his anti-seizure medication and eventually switching medications, his episodes began to get worse. After several tests, doctors told his family the “dizzy spells” were actually petit mal seizures. The various changes in medication and dosage were not working. Eventually, Garrett was having 10-15 petit mal seizures per day. It was difficult for him to attend school, play sports or function as a normal teenager. A team of specialists decided the best plan of action was to try to get more of the tumor out. The tumor had increased slightly and developed a diseased area around it, which was contributing to the seizures.
Garrett had a second brain surgery in November of 2011. It’s much easier on the child (and the parents) when a surgery happens as a toddler. Brain surgery for a teenager is very intimidating. Everyone knew this had to be done in order for him to have any quality of life. His surgery was done by Dr. Ronald Grondin at Nationwide Children’s Hospital. He was assisted by his wife, Dr. Lori Hamiwka, who is a neurologist specializing in seizures. After a 10 hour surgery, Dr. Grondin was able to remove the diseased area and more of the tumor itself. Garrett still takes daily anti-seizure medication, but has not experienced a seizure since that day. Unfortunately, the pathology report showed Garrett’s tumor as a Low Grade II Astrocytoma. This is currently a benign tumor, but research shows that most Grade II Astrocytomas eventually become Grade III Malignant Tumors at some point. For this reason, Garrett gets MRI’s every three months to ensure there is no growth in the tumor.
The family’s plan (if this tumor were to change) is to travel out of state for aggressive proton therapy treatments. For now, Garrett is enjoying life as a normal teenager. He got his driver’s license last summer and enjoys hanging out with his friends and family. He also enjoys school, playing baseball, football, show choir and performing in the high school plays. His family is grateful for the wonderful staff at Nationwide Children’s Hospital for saving his life."
"Faith was diagnosed on October 24th, 2012, a day I will never forget. I find myself remembering this day more than birthdays. Little did we all know Faiths battle started 2 months prior to her being diagnosed. Faith had got what I thought was the flu, but it just wouldn't go away after multiple trips to the doctor and multiple different diagnosis from sinus infections to ear infections even bacterial infections and multiple different medications. I was at a loss and didn't know what was wrong with my precious Faith. On October 18th Faith had a headache that night that was awful, she just wouldn't stop crying. I had made up my mind I was taking her to Children’s Hospital the next day after work. I didn't make it 2 hours at work before I got the call that she had collapsed at babysitters and was very weak. My mom and I rushed her to the hospital where it took seven attempts to get an IV in Faith because she was so dehydrated. Once they got the IV in they rushed her back for an MRI that lasted 2 hours. I knew something was wrong when they brought her back to room and doctor asked me to meet him outside the room. I still wasn't prepared for what they told me. The MRI revealed a golf ball size tumor on Faiths cerebellum that was starting to attach to the brain and she would need surgery to remove it and find out if it was cancer or not. In that moment I was in shock I felt that I had not done all I could as a parent and I should have done something sooner. But doctors assured me I had done all I could!
Faith was admitted to the ICU that night where she started having severe seizures that were getting progressively worse. Doctors decided they were going to insert a drain tube in the top of Faiths head to release the pressure the tumor was causing on her brain. They performed this at bedside and it took about 30 minutes. Once they were done, the seizures stopped and I could see my sweet princess smile!! Something I hadn't seen in 2 months.
Faith's surgery was scheduled for Monday October 19, 2012 at 7am, she was the first patient in the OR that day and the last patient to leave. Her surgery lasted 16 hours. The most agonizing time of my life. The doctors called me every two hours to update me and everything was going good. At 11:30 pm that night I was told they were able to remove the entire tumor but had I waited another week to bring Faith to the hospital, the tumor would have fully attached and would have been inoperable. I was so sick to my stomach but all I wanted was to see Faith. When I walked into the room I was shocked I what I had seen. Faith was awake and smiled at me so big something I will never forget.
On October 24, 2012 I was asked into a room where there were four doctors. I was very nervous didn't know what was going on and then they told me the words I didn't want to hear, 'We are sorry but your child has cancer!!!' Faith had Cerebral Medulloblastoma, a rare but treatable cancer. She would need extensive radiation therapy as well as chemotherapy to kill any remaining cancer cells. There are no words to describe the feeling you feel as a parent when you are told this news. I told myself in that moment that I wasn't going to let Faith see me cry or upset. I knew I had to be her rock and her strength.
Faith spent 30 days in hospital going through extensive rehab where she amazed me every day with her strength and courage, she had a smile on her face that didn't go away. The day before Thanksgiving Faith was able to come home to her family and friends.
On November 29, 2012 Faith started her radiation therapy a six week process five days a week. For me this was the hardest part, Faith still had no appetite and was so pale (almost gray in color), she had no strength to do anything. I had come to the point where I asked the doctors if I needed to make other arrangements. At that point I didn't think she was going to make it, I couldn't even hold her or hug her because I felt so many bones in her body. Her doctors decided to admit Faith back to the hospital due to her complications and to give her IV nutrition. They told me they were doing everything they could and to pray.
Faith finished her radiation on January 11, 2012 and now she had a six week break to be a kid and regain her strength before she started her chemo which would be 14 rounds of chemo a treatment once a month where she had to be inpatient for them. I was amazed at how Faith went through this, she never gave up and smiled every day and made her nurses and doctors laugh no matter how she felt or what happened. The chemo made Faiths bones very weak, she fell on the carpet at home and broke her arm and then a week later fell again and broke her ankle but being in a walking cast and a cast on her arm still didn't stop her. She kept fighting and amazed every one!! Her doctors even told me they have never seen a child her age go through this the way she did. That she truly was an inspiration!
On March 4, 2014 Faith got to ring the bell at the hospital. The ringing of the bell means she beat cancer!! This day was so special for family and friends because the Faith they all knew and loved had inspired so many people with her courage and strength and we all can't wait to see what the world has in store for Faith!! We still make regular visits to the hospital for MRI's every 3 months and so far they have all come out perfect. There are no words to describe the thanks and appreciation I have to Children’s hospital and organizations like Rockin' on the Run. The countless donations and support are so appreciated to any family that has a child diagnosed with cancer. My hope is one day they find a cure and kids don't have to fight this awful disease!!"
"Carrie was about 2 when we started noticing that she would have brief moments of staring off into space. Initially we brushed it off, as these moments only lasted a few seconds and weren't too frequent. As time progressed, these episodes became more frequent and sometimes lasted longer. She never fell or shook...she merely stared off and stopped responding to us.
We took her to her pediatrician, who believed she was having seizures and ordered an EEG. The testing confirmed she was having seizures, and they immediately started her on medication, which stopped the seizures. They reassured us that most kids who have seizures have no other problems, but they wanted to do an MRI to confirm that. We showed up for the MRI, expecting no problems. They sedated her and the testing began. During the test, I saw our neurologist come in to the MRI center, which I found odd. A few minutes later he asked to speak with us privately. He shared that she had a tumor, about the size of a golf ball, in the front of her brain. He was unsure of the type, prognosis, or possible treatments at that time, and said we would be sent immediately upstairs to see the neurosurgeon. Those were some of the scariest hours of our lives. We met with the surgeon, and he immediately assured us he was nearly 100% sure that Carrie's tumor was not cancerous. It was called a Dysembrioplastic Neuro-Epithelial Tumor (DNET). He said it would need removed, which carried risks, but he believed she would fully recover.
About two weeks later, Dr. Kosnik removed her tumor. She had more stitches than we could count, and her eyes swelled to the point that she could only see out of the corner of one eye. She spent that night in PICU, and the next five days at Nationwide Children's Hospital.
Since then, Carrie has had countless CT scans and MRIs. We have been blessed that her tumor did not return, and her brain is doing great! She suffers from migraines, which we manage with medication. She is now a healthy and active 12 year old with a kind and generous heart."
"Zachary's issues started about 3 years ago when Zach began complaining about neck pain and his stomach hurting. We got a referral for a Gasgerontologist where they diagnosed acid re-flux and lactose intolerant. The medications seemed to be working until last fall he seemed to be losing energy and started complaining of the same issues. When we took him back to the doctor he had passed out in the office. She sent in for an EKG, which showed that he had Long QT which is a heart condition. We decided to seek a second opinion and went to Cincinnati Children’s Hospital. After doing many tests, they put him on medication to help his heart. But in September 2017, he started having seizures.
Zach was put on full physical activity restrictions until his doctors could diagnose the issue. The neurologist did an EEG which came back abnormal so it was followed up by 3-day EEG. On the first day of the 3-day EEG he had 19 seizures overnight, they diagnosed him with epilepsy and sent him home to follow up with an MRI. The MRI showed their worst fear, he had a tumor and a small mass on the left side of his brain very close to the language area.
Zach has a tumor on the left side of his brain and had surgery in February of 2018. Doctor's are still watching a small piece that could or could not be a residual tumor. Zach is still having seizures, but not a severe as they were before the surgery. Zach is also dealing other health issues as well."
"In February 2016 at 17 months old, Logan James was diagnosed with a type of brain cancer called Medulloblastoma. He had been sick for about two weeks before we found out he had a tumor. He was throwing up in the mornings and at night, not eating and very cranky. He only wanted to be held a certain way. The ER kept telling us it was the flu and finally our pediatrician ordered a CT scan and a large single tumor was discovered in his brain. After six months of chemotherapy he was cancer free.
A few months after being declared in remission, the cancer came back in full force. Not only did he have another large tumor, but he had so many smaller tumors covering his brain they could not count them. The tumors spread down his spine as well.
After another brain surgery to remove most of the biggest tumor, a shunt placement surgery, nine months high dose chemotherapy and radiation, Logan James is once again cancer free! Logan is a normal three year old enjoying being home with his big brother and dogs. Logan is still cancer free and will be cancer free two year in May."
"In June of 2018, our son Ryan had his first seizure. We were late coming home and thought he was asleep in his car seat. Upon arrival at home I noticed his eyes were off to the side and making a rhythmic motion. We called 911 and Ryan was transported by EMS to Children’s Hospital. During the transport Ryan’s seizure stopped on its own. The doctors at the emergency room evaluated Ryan and discharged him later that night and had us follow-up with our pediatrician and neurology. We made our appointments and were explained that some children have one seizure and never have another. Kids are not diagnosed with a seizure disorder unless they have more than one seizure. 6 months went by and Ryan had been seizure free and we thought he would never have another one. Two weeks into December Ryan had 2 seizures within a week of each other. Neurology started a more complex work-up, but had assured us they thought for whatever reason he was “wired wrong” and would most likely outgrow the seizures.
They sent Ryan for an MRI as part of the standard work-up. We received a call from the neurologist the next day letting us know that they had indeed found an abnormal growth in his brain. This news came as much of a surprise and we were devastated not knowing what we were facing. We were referred to neurosurgeon Dr. Jeff Leonard. The mass is benign and can be surgically removed if necessary. The location of the mass is close to his vision center and if he would require surgery the risk would be him losing his eye sight. For now, Ryan will continue to take anti-seizure medication and as long as his seizures are controlled on medication we will continue to have frequent MRI’s to watch for growth and changes. Ryan’s next MRI is in April and we are hoping the mass has not grown. Ryan’s story is still unfolding, but we are cautiously optimistic and are hoping that Ryan will never require surgery.
We see stories of other kids whose conditions are much worse than Ryan’s and we are truly blessed that at this time his prognosis is great and there is a treatment plan. We were honored to share his story and have the opportunity to bring awareness to pediatric brain tumors. This journey has allowed us to meet many great people and to see the high quality of care that Nationwide Children’s Hospital offers."
"Our daughter, Natalie, was diagnosed with a brain tumor when she was 2. For 6 months, I went from doctor to hospital trying to figure out what was wrong with my baby! They said she was just 'fussy'! Finally. the doctor did an MRI of her head and found a tumor. She had surgery in August of 2000 at Dayton Children's Hospital. They could only remove 70% of the tumor. The rest is on the brain stem. She had MRI's every 3 months, then to every 6 months and finally we are now once a year!
She had proton radiation therapy in 2010 in Indiana after surgery. The tumor has remained stable. As if having a brain tumor wasn't enough, she also had back surgery in 2013 for Scoliosis. Natalie is planning to become a pet therapist. She loves the idea of taking pets to sick children in the hospital. Her MRI is scheduled for May, although it has always remained stable, we still get nervous for her yearly scans."
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