Our Heroes: They no longer have a voice... but we do!

Nate Andrew Elfrink

July 29, 2002 - March 26, 2010

"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 ecstatic! 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

January 27, 2003 - December 7, 2010

"Violet was diagnosed with a brain tumor Friday, November 13, 2009. She had been battling an un-diagnosed 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

Braxton Long

October 14, 2008 - July 24, 2017

"Braxton was diagnosed with Glioblastoma Multiforme stage 4 brain cancer at Nationwide Children's hospital in October of 2014 after waking up with a debilitating headache that within 30 minutes led to losing all left side function, speech and bowel control. He underwent a 12 hour brain surgery the next day to remove what was left of a tumor that had exploded between the two hemispheres of his brain. He was unable to walk, had severe left side weakness and was put into long term rehabilitation at Children's following the surgery.

After a week of intense therapy of 4-5 hours a day, he had zero progress and insurance said he was a lost cause and refused to pay for any additional time in rehab. Another MRI was done to try to determine the cause of why he was not healing as they had expected and they found that his head was under immense pressure due to the ventricles not working correctly.

He went in that same day to have a shunt placed and within days was making huge strides at regaining his left side function. He started chemotherapy within 2 weeks that consisted of 4 different medicines that made him extremely sick. He went from 61 lbs to 41 lbs and practically lived in the hospital from the end of November to the end of March because of the numerous infections he had. The most difficult part of this for him was being away from his sisters, one of whom is his twin. Because of them being so young, they were never allowed to visit him the entire time he was admitted, including Christmas Day.

In April, he started a new high dose chemotherapy that required stem cell transplants in order for him to survive the lethal doses. In May during his second high dose round of chemo his body went into full anaphylactic shock because he had developed a severe allergy to one of his chemo medications. He was put in ICU and came very close to dying. He finished the rounds of high dose chemo, but was now hospitalized for the duration and received extra steroids and anti allergy medications in order to be able to tolerate it.

In July, Braxton's MRI showed he was cancer free. We were ecstatic! However, 6 short months later, in January of 2016, the cancer returned. He began a new type of chemo and radiation treatments daily for 9 weeks. In April, his scans again showed no signs of disease. Braxton has continued chemo every 2 weeks since January and will never be able to not do chemo until a cure is found due to the aggressive nature of brain cancer. He finally graduated from occupational and physical therapy this July and we are so thrilled to say he has regained complete function, including being able to ride a bike with no training wheels, which is something we were told he would never do again. He was active in sports, playing soccer, basketball and golf and has so much love for life! He played outside as much as he could! He had the biggest heart ever, and never forgets to pray for his friends who are also fighting! He had a list of ideas of ways he could help the kids who are stuck at the hospital have a little more fun while they're there. Sadly Braxton lost his battle with cancer in July of 2017." 

 

 

Rockin' on the Run is a 501(c)3 organization. All proceeds will benefit brain tumor research. All donations are tax deductible to the extent allowed by law.

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