About the Foundation

 

Ellis Mayfield-History

 

Ellis with his dad before his first brain surgery.

Ellis’s Story

We found Ellis’s tumor the day after his sixth birthday. Ellis had been having trouble with his vocal cords. We had noticed that he was losing tone to his voice and when he spoke it sounded airy. Our ENT sent us to a specialist at MUSC in Charleston. After doing a laryngoscopy it was determined that Ellis was suffering from some kind a paralysis of the vocal cords as they were not closing fully when he tried to talk. The doctor in Charleston set up for Ellis to undergo an MRI just to rule out that a tumor could be the reason for the paralysis. We were told that there was a five percent chance that it would be a tumor causing the problem. On May, 13th 2002, Ellis underwent the MRI which would reveal a two inch long and half an inch thick tumor growing on the back of his brainstem. Afterwards, we met with the doctors who would be his oncologists in Greenville, Dr. Hayes and Stroud. It was immediately decided that Ellis would receive treatment at Duke University Medical Center. His oncologist there would be Dr. Sri Gururangan, an absolutely wonderful human being who, I still believe, provided the best medical care possible for my son.

 

The first thing that had to be done was to find out what kind of tumor Ellis had. Another fabulous doctor, Dr. Timothy George, was his neurologist. Dr. George was going to try and biopsy the tumor so that it could be analyzed to determine what kind of tumor he had and whether or not it was malignant. If the tumor was benign, Dr. George was going to try and remove as much of the tumor as possible. Ellis ended up having to go through two brain surgeries in one week. At first the doctors were unsure of what kind of tumor Ellis had. First, they thought it was benign, and then they switched and thought it was malignant. Finally, they were able to determine that Ellis had a very rare benign tumor known as a desmoplastic ganglioglioma. Less than a hundred know cases of this tumor were known to have existed at the time that Ellis’s was discovered and almost all of them were found in infants. This type of tumor was actually considered to be a good tumor to have if it was located in a place where it could be cut out. Ellis’s, unfortunately, was located in a spot, his brainstem, which made surgery impossible. Even using microscopic surgery techniques, it was impossible for the doctor to tell brainstem from tumor while cutting. The MRIs that Ellis had undergone had shown that the tumor was also growing into the brainstem. Further surgery would not be an option for Ellis.

 

Our next step was to try chemotherapy. Under the care of Dr. Gururangan and his very capable nurse practitioner, Melody Watral, Ellis began several different protocols of chemotherapy. Some of the chemotherapy was able to be administered in Greenville, some at home, and other doses at Duke. Every two months or so Ellis would undergo an MRI to check on the tumor. Occasionally, we would get good news that the tumor had not grown or even appeared to shrink a little. But, most of the time the news was bad. I came to dread going to Duke for the MRIs.  We always went up thinking things had gotten a little better for Ellis, or that we had turned a corner and were starting to beat the tumor, and then the results would come in; the tumor had grown. We had to do something different.

 

Radiation was the last option for Ellis and possibly the most dangerous as far as side effects. If you blast the tumor with radiation and kill it, then you tend to kill everything else around the tumor. With the location of Ellis’s tumor in such important location, the possibility for debilitating side effects was high. Ellis’s radiologist, Dr. Edward Halprin, was considered to be a genius, and he was doing incredible things with radiation to help children. Ellis underwent thirty radiation treatments over six weeks at Duke. During this time he and his mother stayed at the Ronald McDonald House in Durham, while I stayed home with Ellis’s two brothers and sister. Sullivan at the time was 9, Rebekah was 4 and Torre was 2. At the end of the radiation, Ellis seemed to have handled the radiation well and we were very optimistic.

Ellis with his mon at the Ronald McDonald House in Durham while he was having six weeks of radiation treatments.

One note of importance is that Ellis very early on had to start taking an extremely strong steroid called Decadron. Decadron proved to be very beneficial to Ellis’s quality of life as it allowed his voice to come back, but more importantly, had allowed him to keep swallowing, which had become a problem. Unfortunately, Decadron has some horrible side effects. One is that you gain tremendous amounts of weight and another is that your skin can begin to breakdown and loses the ability to heal itself. Ellis would end up suffering both of these horrible side effects. Decadron, however, was a necessary evil.

 

After the radiation, it was a time of wait and see how the tumor would respond. Unfortunately, the tumor began to grow again. We went on to more chemotherapy but it was all to no avail. The amazing thing was that I always thought we were turning things around for Ellis. The last weekend of his earthly life we had a birthday party to go to with my wife’s family and a dinner in Anderson with my family. I remember that Saturday riding in the car, Ellis was sitting up front, so he wouldn’t get car sick, and he was bobbing his head in time with the music from his favorite Shrek CD. I thought to myself, even then, that life is good, and we are beating this thing and I thanked God for all that he had done for me, Ellis, and my family.

 

Wednesday, March 10, 2004, was a regular day for me. I had gotten up and dressed extra professional for my job as a principal of Ware Shoals Junior High School. I don’t know why I dressed so nice that day. I just felt it was going to be an important day. That morning I packed a wound located on Ellis’s chest that he had from an infusaport that had failed to heal. Ellis was very lethargic and could barely sit up right. This was not unusual as we had seen Ellis go through this type of spell before. We were also tapering his Decadron in hopes of getting him completely off of the dreaded medicine. One thing that we did notice was that the tips of Ellis’s fingers had a bluish color to them. This should have been cause for alarm, but some reason it just didn’t register. Shea and I decided that he would need to go to the doctor that day, and that I would have to stay home and help since he was so lethargic. Shea went to take a shower while I proceeded to get the other children fed and ready for school. Ellis was in a great deal of pain that morning and was moaning as a result. I tried to sit him up to see if that wouldn’t help. When it didn’t, I asked him if he wanted to lie down. He wasn’t speaking but did nod his head. I laid Ellis down, knelt down beside him and prayed with him. I thanked God for all of the wonderful blessings He had given to our family; I asked that He would come be with us; and that He would take away Ellis’s suffering and provide him comfort. I gave Ellis a kiss on the cheek and said A-men. I went back to the kitchen to continue getting the other children ready for school. Ellis’ brother Sullivan had already left with his car-pool when Shea came down from her shower. She frantically called me to Ellis’s room saying that she didn’t think he was breathing. Ellis was still warm. I tried to sit him up, and he was totally unresponsive; he wasn’t breathing, and I couldn’t find a pulse. I told Shea to call 911, and I started CPR. The paramedics responded extremely quickly, and I think they brought the entire fire department with them. I was very grateful for all of their efforts to save my son. Even though they pronounced Ellis dead at Greenville Memorial Hospital, I know in my heart that he died in our home, in my arms, as I tried to breathe life back into his body.

As you can imagine, the grief, that Shea and I and everyone else who knew Ellis, was awful. I kept hoping that I would dream about Ellis and would be able to see him again, just one more time. I prayed and prayed to see him just one more time and then one night, it happened. I saw Ellis lying in his coffin in his favorite Clemson football jersey, which he had been buried in. All of sudden he got up and climbed out of the coffin. But, the young boy getting out of the coffin was not the tumor patient whose body had been so completely ravaged by steroids, surgeries, radiation, and chemotherapy but was the little boy I had known before the tumor. It was the little boy who loved to play soccer and baseball and backyard football. The little boy who at age six could climb all the way to the top of a ten foot basketball goalpost and just grin at you with that wonderful smile. The little boy who I knew and loved was whole and healed. Ellis ran over and gave me a hug, and he always gave the best hugs in the whole world. And at that moment, I felt complete, absolute, and total joy. I have never felt joy like I did at that one, brief moment. For just a second, I believe, I felt what heaven must feel like and I knew my son was okay.

 

 

Ellis Mayfield was your ordinary first grade student who had something extraordinary happen to him. Ellis got a brain tumor. The tumor was found the day after his sixth birthday and in twenty–two months he would leave this world. What was special about Ellis was not that he had a life threatening tumor, but that he faced death square in the eye and was able to smile. The whole time, through surgeries, chemotherapy, and radiation, you saw that smile. And from his smile, you felt his indomitable spirit. It is his smile and that spirit that we want to keep alive. The Ellis Mayfield Foundation was founded for the sole purpose of keeping his spirit alive by helping other children in the Upstate of South Carolina that are just like Ellis, who everyday are facing death and are able to smile.

 

 


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