Hello,

I’m Tammy, Clay’s mom. This is my attempt to tell you about Clay’s journey. It’s a sad story with a devastating ending for our family and for the those that loved Clay. It is our hope, with the help of family and dear friends, that something good will come out of our attempt to remember and honor Clay.
Before I start this I want you to understand that our family is very, very close. Let me introduce you to our family. My parents are Agnes and Earl. My sister is Terri and her husband is Barry and their children are William and McKenzie . My husband is Bobby and Kasey and Clay are our children. The ten of us have always been fortunate enough to spend all the holidays together. We always celebrate birthdays and special occasions together. We are in contact with each other ,usually on a daily basis. Since Kasey’s birth, our family has taken a yearly beach trip together and actually survived for a week under the same roof. There is a two year age difference between Kasey and Clay, a six month age difference between William and Clay and a two year difference between William and McKenzie. My Mom kept all four of them until each was ready to start school so they did a lot of growing up together. Now you know a little about us so . . .
We had no idea how drastically our lives would change on 10-21-18 when I took Clay to the emergency department at Alamance Regional Medical Center in Burlington. Clay had been having some pain in his right leg during the previous week but the pain now was almost unbearable for him. Once we got to the hospital the pain seemed to increase and we waited and waited and waited some more. Finally, we were able to see the doctor. They were not able to find a reason for Clay’s pain so the doctor ordered an MRI and we waited some more. I remember just knowing that something was horribly wrong and I texted my husband and told him my feeling and that he’d better get to praying. Hours later the doctor told us that the MRI showed a mass on Clay’s right femur and he suspected that it was cancer. I started crying and Clay took my hand and said, “Mom, it’s gonna be okay.” I wish with everything in me that he had been right.
On 10-22-18 Clay and I were transported by ambulance to UNC Hospital in Chapel Hill and taken to the fifth floor of the Children’s Hospital - 5 Children’s, as it would become to us. From the moment that we stepped onto that floor we were surrounded by the most compassionate and caring people. They tried to attend to our every need but they could not wake us up from this nightmare that we found ourselves in and that was what we really wanted them to do.
Testing was started on Clay. We were introduced to Dr. Stuart Gold and his medical team, another set of incredible people. A biopsy could not be done until 10-25-18 so Clay was given medications for pain and he was discharged from the hospital on 10-23-18 and was instructed not to put any weight on his leg and to use crutches.
On 10-31-18 we met with Dr. Gold and Diana Gordon (RN, MSN, CPNP, CPON )and they confirmed that Clay had cancer, Ewing’s (or Ewing) Sarcoma. This did not even seem real and we could not even begin to process all of the information and all of the things that Clay would have to do and have done to him. From that moment on, our normal ceased to exist. Nothing would ever be the same.
Clay was 17 years old and a senior at Eastern Alamance High School. This was supposed to be a very special time in his life. He was supposed to be having fun with his friends and figuring out what he wanted to do and be in life. Instead, he was trying to wrap his head around the fact that he had cancer, that he’d be starting chemo soon, that the chemo had side effects and that he would not be returning to school and to his friends. He didn’t know what to expect and neither did we. We were all about to receive a lesson in what happens when cancer attacks someone that you love and completely invades your life.
We moved into our new normal which involved echocardiograms, CT scans, bone scans, PET scans and a plethora of blood draws. Clay was instructed to have his braces removed and that was done on 11-5-18. Later that day, I met with the guidance counselor and school nurse at Clay’s high school and we tried to figure out how to get his classes completed from home. On 11-8-18 Clay had surgery to place a port in his chest and his bone marrow was taken. He was admitted into the hospital. The dreaded chemotherapy began on 11-9-18 and Clay received chemo the following day again before being discharged.
Clay’s routine consisted of going to have labs done to see if his numbers were high enough to start chemo. If they were then he’d do chemo and if they were too low then he’d wait a few days and go back and do labs again. It made it so hard to plan anything because you never knew what the numbers would show. We learned more about cancer things than we ever wanted to know about like . . . a fever will bring you into the emergency department fast and in a hurry and call the on call doctor when you are leaving your house, drink plenty of water before blood draws, the nurse will show mom how to give an injection at home following chemo, that fluids can be sent home in a back pack attached to your child’s port overnight and the nurse will also show mom how to take the needle out of her child’s port following that hydration period, the highs and lows of emotions and physical discomfort during five days of inpatient chemo, that it’s okay to be scared out of your mind, to keep bags packed at all times in case you have to go to the hospital quickly, to make a note about everything that is done to your child and to keep a daily list of the medications that were given and at what time they were given, that you can put numbing cream on your child’s port and cover with press-n-go prior to labs to ease some of the pain and that if your child is really sweet (just kidding) then the nurse will even spray it with freezee spray before putting in the needle, that those couches in the hospital rooms aren’t so comfortable night after night, that it’s hard to get any sleep in a hospital room and just how helpless and useless you feel when you can’t do anything for your sick child. Another thing that impacted us was that we realized our family was not the only one fighting this life altering disease. The rooms on 5 Children’s were completely full most every time that Clay was inpatient. It was common on the days that Clay was to complete five days inpatient that we had to wait for someone else to discharge before he could be admitted. It was such a reality check to look around and see all those other sick children and their anguished families.
On 11-16-18 we went back to clinic in the Cancer Hospital at UNC Chapel Hill and a second round of chemo was administered. On 11-17-18 Clay began running a fever. Bobby and I took Clay to the emergency department at UNC Hillsborough. Clay and I were transported by ambulance, again, to UNC Chapel Hill and Clay was admitted to 5 Children’s. His fever finally broke on 11-19-18 and he was discharged at 9:00pm that night. On 11-24-18 Clay was admitted again at UNC Chapel Hill for five days of chemo.
On 11-30-18, Clay finally agreed to have all of his hair cut off because it was coming out everywhere. A friend of ours at a local salon did this for us. I don’t think that Clay ever forgave me for talking him into going ahead and getting rid of his remaining hair. I think he would have preferred to just let the hair come out naturally but once it was gone I thought he had the most handsome bald head. It’s a shame that I was never able to convince him of that. Clay hated how being bald made him feel but I did not realize the extent of that hate until many months later when we were talking.
On 12-7-18 Clay was admitted to UNC Chapel Hill and chemo began at 11:30pm. He received chemo again on 12-18-18 and was discharged that night at 10:00pm. Round number five of chemo started on 12-22-18 and lasted for five days so all ten of us celebrated Christmas in the hospital and then again ,at home , once Clay was discharged. On 1-7-19 Clay did chemo in clinic and returned on 1-8-19 for a second day of chemo in clinic.
Clay was not able to attend high school so the school worked with us and homebound schooling was started. A teacher came into our home and brought Clay’s assignments, returned his work to his teachers and administered tests.
Clay completed the next round of chemo inpatient from 1-22-19 to 1-26-19. He had a blood transfusion on 1-26-19 - two pints of blood.
On 1-30-19 we met with Dr. Robert Esther, another super guy, and discussed surgery to remove a portion of Clay’s femur. Surgery was scheduled for 2-4
-19 but Clay’s platelets were too low so surgery was cancelled. On 2-11-19 Clay had a five and a half hour surgery. Almost seven inches of his femur was removed and replaced with donor bone, plates and screws. He was discharged on 2-15-19. On 2-20-19 Dr. Esther removed sixty three staples from Clay’s leg and on 2-21-19 he began physical therapy. He went two days each week. Clay liked going to physical therapy and enjoyed the people that worked there, especially Michael.
Chemo resumed on 2-25-19 for two days in clinic. Five days of inpatient chemo began 3-13-19 and ended 3-17-19. Round number ten of chemo was done in clinic on March 27-28, 2019. From 4-12-19 to 4-16-19, Clay received inpatient chemo. He had another two pint blood transfusion on 4-23-19. On 4-30-19 Clay had chemo in clinic and they sent us home with a backpack full of fluid. The next day I had to take the needle out of Clay’s port to disconnect him from the fluids and also had to give him an injection in his leg. Talk about being afraid of doing something the wrong way. I was petrified!
On 5-3-19 Bobby and Clay came home with a red 2010 Jeep that Clay had picked out. I took a video of Clay coming down the driveway and parking. Clay was so,so happy. That Jeep was his pride and joy and he dearly loved it.
With the consent of his medical team, Clay attended his senior prom on 5-4-2019. He looked so handsome in his tux but hated having to wear a black ball cap to cover his bald head. His prom date was so sweet and gorgeous. We took lots and lots of pictures and it was a good day.
The next round of chemo started on 5-15-19 and ended on 5-19-19. Clay’s homebound teacher came for the last time on 5-30-19 and he was so glad to be done with school work. He liked his teacher but was ready to be done with school stuff.
Clay celebrated his eighteenth birthday with family on 6-1-19. On 6-5-19 we attended the Eastern Alamance High School golf banquet at Mill Creek Golf Club. Although Clay had not been able to physically participate in golf that year, he had been allowed to be a member of the golf team. All year he had been supporting his teammates and had been with them in heart and spirit.
Clay completed the next round of chemo on 6-10-19. On 6-14-19 Bobby, Clay and I went to Clay’s senior breakfast at the Ramada Inn and he enjoyed seeing his classmates. Clay’s medical team allowed him to participate in his high school graduation so he walked across the stage and received his diploma on 6-15-19. Clay’s medical team also rearranged his chemo schedule so he could go to Myrtle Beach for a few days with his friends to celebrate their graduation. I’m so thankful that he was able to do these normal things.
On 6-24-19 Clay was admitted for four days of chemo. It had taken him so long to recover from the previous five day chemo that his doctor had decided to reduce his medications during this stay. On 7-11-19 Clay and I went to UNC Hillsborough for labs and his numbers were good so they directed us on to UNC Chapel Hill to begin chemo. Once there Dr. Gold and Diana talked with us in clinic and told us that Clay was done with chemo. We were completely surprised and actually did not even know what to think. Hallelujah!!
Clay’s surgeon, Dr. Esther, allowed Clay to ease back into playing golf and that’s just what he did. Clay started making up for lost time. It seemed that he was always going somewhere. He registered for classes at Alamance Community College so he could start classes in the fall. On 7- 31-19 Clay went to the Wyndham Golf Tournament at Sedgefield and he actually got to meet his favorite golfer, Jordan Spieth, and was able to take a photo with him. Being able to do that just made Clay’s day.
On 8-17-19 Clay rang the bell in clinic and also rang the bell on 5 Childrens. He was joined by family and friends, the staff in clinic and at 5 Childrens, Dr. Gold and Diana. It was wonderful to celebrate Clay being cancer free. Emotions were so high that day. We were at the hospital from 9:30am until 6:00pm that day as Clay had to do about five medical tests before we left. On 8-22-19 Clay had surgery to remove the port from his chest and he was so glad that thing was gone until he realized that he would now have to actually get stuck for every future blood draw.
On 9-7-19 Clay zip lined at Kersey Valley with his grandmother to celebrate her 80th birthday. It was a hot day and everyone enjoyed it. Clay continued to do physical therapy twice a week on his leg. He was attending classes at Alamance Community College. Clay started a job on 9-12-19 at Alamance Country Club as a golf cart attendant. This guy absolutely loved this job and the people that he worked with. He looked forward to going to work but he drove me crazy waiting to the last minute to leave, not giving any thought to something happening on the way that would cause him to be late. Clay could be so frustrating at times!
After ringing the bell we thought all was well even though we knew, in the backs of our minds, that it was possible that the cancer could return. We just hoped and prayed for the best. This was a happy time so let me tell you some of the things that were important to Clay. Clay had a real love for music (usually loud) and he enjoyed different genres of music from country (Morgan Wallen) to rap ( Da Baby )and Latino music (Bad Bunny). He loved “my boys”(Caden, Jalen, Luke, Peyton, Sam, Tolar, Zack and Zane) as he called them, a group of friends from high school and from the golf team. These guys truly are special and they stayed in close contact with Clay and had his back the whole time. They probably don’t even realize how important a role they played in keeping up Clay’s spirit. He loved his buddy, Austin, and Austin’s parents. They made a lot of memories together and they loved Clay as their own and provided a great deal of support to all of us. Clay loved interacting with other friends too, like Logan, Julieta, Lillie, Olivia, Sydney, Lyndsey, Jack, Joey, Gavin, Donald, Dylan, Nick, Clayton, Nathan ,Caleb, Emilyn, Tripp ,Sam, Will and Ethan . I hesitate to name names because it is not my intent to leave anyone out but I’m sure that I am. I apologize if I have missed your name but I’m sure you know who you are and Clay definitely knew who you were. Clay loved the game of golf and played whenever he was able. It made him terribly sad that he could not always play because he was on crutches so much of the time. He loved adding new things to his Jeep and could sometimes be found just sitting in the Jeep in our driveway. Clay loved being on his phone and there were so many times that was all he could physically do. He loved the Baja Blast freeze from Taco Bell, the smoothies from Tropical Smoothie Cafe and the BBQ sandwiches from Hursey’s Bar-B-Q. I think Clay liked making people happy and he was pretty good at it when he wanted to be.
Clay had scans on his leg and chest on 1-19-20. We saw Dr. Esther on 1-21-20 and he told Clay that he could drop down to once weekly on the physical therapy. Dr. Gold called us on 1-23-20 after he had reviewed the scans from 1-19-20 and said that it looked as if Clay might have an infection in his lungs so Clay started a round of antibiotics followed by a second round two weeks later. On 3-11-20 we were told that Clay’s CT scan from 3-7-20 was clear.
Towards the end of March, Clay began having pain in his leg so an x-ray was done on 3-27-20. Dr. Esther called us later on that day and said Clay a total of four broken screws so this would need to be repaired. He also said that he would like to add more bone graft because the healing was not happening as much at the bottom where Clay’s bone met the donor bone. Dr. Esther told Clay to stop working his job and to go back to using the crutches full time. This broke Clay’s heart because he wanted to keep working and more surgery would mean going back to the crutches full time and being less mobile again. I hurt for Clay but we knew that the surgery was necessary.
On 4-20-20 Clay had surgery on his leg to replace plates and screws and to add bone graft. He was admitted to the hospital following surgery. Due to COVID-19, only one parent was allowed to come into the hospital with Clay and I was only allowed go stay with him for twenty four hours after surgery so he spent the night of 4-21-20 alone in the hospital. Clay had never spent the night alone in the hospital since all of this started and it was the only time that he has been admitted on the adult side of the hospital. He made it just fine though and he was discharged on 4-22-20.
Clay saw Dr. Esther on 5-7-20 and again on 6-5-20. The x-rays looked good so Clay would start physical therapy once a week on 6-8-20. We met my sister and her family at the beach for Memorial Day weekend and Clay was still on crutches from his 4-20-20 surgery. William was determined to get Clay into a kayak in the canal and he worked and worked until he made it happen. His determination paid off as he, Kasey and Clay were able to float around together.
We celebrated Clay’s nineteenth birthday on 6-1-20. He was still on the crutches but we hoped and prayed that all would be better after this set back with the hardware in his leg.
Clay continued to have appointments with Dr. Gold in clinic at the cancer hospital and with Dr. Esther. On 8-12-20 Clay saw Dr. Esther and was told to try to wean off the crutches, which was music to Clay’s ears. Bobby’s Mom,Doris, passed away on 8-15-20. Her funeral was on 8-20-20 and Clay was having pain in his leg again that day. He saw Dr. Esther on 8-26-20 and another x-ray was done but it revealed no reason for the pain. Dr. Esther told Clay to get back on the crutches for two more weeks and that maybe he had tried to get him off the crutches too early.
Bobby and I left on 9-3-20 to meet Terri and Barry at Holden Beach for Labor Day weekend. On 9-4-20 Clay began having excruciating pain in his leg and Kasey took him to UNC in Hillsborough to the emergency department. The nurse came in and told Kasey and Clay that Clay was at risk for metastatic disease. Kasey and Clay checked their phones as the nurse walked out and were scared from what they read about metastatic disease. Kasey was crying and ,again, Clay took her hand and told her everything would be okay, just as he’d done with me in the beginning. He was transported to UNC Chapel Hill and admitted onto 5 Children’s. Dr. Gold and Clay face timed us at 10:30pm that night and Dr. Gold told us that the cancer may have returned.
On 9-5-20 Clay had another MRI and it showed that the cancer had returned in his liver, pancreas and other bones. On 9-8-20 a biopsy was done. Due to COVID, only one parent at a time could be in Clay’s room so on 9-10-20 we face timed with Bobby and Kasey and Dr. Gold told us that the Ewing’s Sarcoma had returned. Dr. Gold spoke with us about what could and what could not be done. He said he believed this would take Clay’s life. I didn’t know what to think or what to say or what to do. I didn’t know how to comfort my young man child and I could not even imagine what he was thinking and feeling. It hurt so badly. There are no words to adequately describe what happened in that hospital room.
Clay had been on morphine for pain since his admission to the hospital but this was changed to Oxycodone and he was able to come home on 9-11-20. On 9-15-20 we met with Dr. Gold in clinic and Clay told him that he wanted to start chemo again to hopefully shrink the tumors so the pain would lessen. This would be different chemo drugs from the ones used initially so I met with the pharmacist to learn how to administer the chemo.
Clay began chemo for a second time on 9-17-20. The doctors had decided that he would receive two oral chemo drugs , a pill and a liquid, for five days straight.
So by this time it was now football season and guess what? It had to be a mistake but DIRECTV provided us with the NFL Sunday ticket, free of charge! Clay and Bobby were ecstatic. This turned out to be such a blessing though because Bobby and Clay spent so much time together watching these games. Clay was a Texan fan and all his free time allowed him to keep up with the who and what and where of the different teams. I know Bobby looks back on those times and smiles/cries and I know he wouldn’t take anything for it. This was a special time for these two guys.
My sister, Terri, decided that we should do some family photos. On 9-24-20, Kaitlyn Oakley met us at my parents home. She photographed us in all sorts of poses and we had such fun together. Clay was on crutches and not really feeling well but he went right along with the program. I know he held it together for the rest of us. That’s just the was Clay was and just what he did.
We met with Dr. Gold on 9-29-20 and he said believed that the tumors were shrinking because Clay’s pain was not the same and to give the Oxycodone every six hours instead of every four as we had been doing. Round number two of chemo was 10-8-20 to 10-12-20. On 10-28-20 Clay had another MRI and CT of his chest. On 10-29-20 Diana called and told us that the tests from the day before showed that the lesions were smaller. The third round of chemo was 11-1-20 to 11-5-20. Round four of chemo was 11-21-20 to 11-25-20. On 12-6-20 Clay had another MRI and CT of his chest and this showed more shrinkage of the lesions. On 12-7-20 Clay told us and showed us that his leg had a knot in it and was definitely more bowed so I called Dr. Esther. We took Clay to Dr. Esther on 12-9-20 and an x-ray was done. It showed a second crack in the donor bone and the hardware in his leg was broken in half. Dr. Esther said that he and Dr. Gold would have to talk and decide what to do next.
Round number five of chemo started 12-13-20 and ended 12-17-20. The doctors decided that Clay needed to complete one more round of chemo before surgery on his leg. Chemo started 1-3-21 and ended 1-7-21. Clay had an echocardiogram, MRI and chest CT scan on 1-20-21. On 1-22-21 Dr. Gold called and told us that the lesions on Clay’s liver and pancreas had grown and we would talk about what to do while Clay was inpatient for leg surgery.
Clay was scheduled for surgery to repair the hardware in his leg on 1-26-21 but when we got to the hospital he was running a fever so surgery was cancelled. He did get to have surgery on 2-1-21 to put in new donor bone and new hardware. He was discharged from the hospital on 2-4-21. On 2-9-21 Clay began running a fever so we ended up in clinic on 2-10-21. His COVID test was negative and CT scan of his chest was clear. On 2-17-21 we took Clay to clinic because of pain in his neck and below his rib cage. We stayed in clinic until 5:30pm when a room opened up at 5 Children’s. He was admitted and he had an EKG,MRI, abdomen scan, chest CT and blood was taken. On 2-19-21 Dr. Gold talked to us (Bobby, me, and Clay) in Clay’s hospital room. The scans showed the tumors on Clay’s liver and pancreas had quadrupled in size in the last three weeks. Dr. Gold told us that this disease was extremely aggressive and he went on to tell Clay that he’d been such a great guy and patient and that Clay had done everything right and so had his parents. Then he told Clay that this disease was going to take his life. Goodness, but those words were a hard, hard thing to hear and an even harder thing to process.
Arrangements would be made to get Hospice to come into our home. Clay discharged from the hospital on 2-21-21 but we had to take him back to the emergency department at UNC Chapel Hill later that night because of shortness of breath and pain. He was not admitted but was given some fluids for dehydration and the doctor there explained to me that this was just the disease causing these things. On 2-22-21 three wonderful and empathetic people from Hospice came into our home and provided us with information, friendliness and some comfort.
On 2-25-21 William came to our house to spend some time with Clay and Kasey. Clay had been staying in bed since his return from the hospital on 2-22-21. William and Kasey decided to take Clay for a ride his Jeep. We finally got Clay down the steps, into a wheelchair , through the garage and into the backseat of his Jeep. William drove and Kasey was in the passenger seat. They drove to the Tropical Smoothie Cafe and got smoothies. Clay was heavily medicated but I think he enjoyed his ride, which turned out to be the last time he got to ride in his Jeep.
On 2-26-21 Clay passed away suddenly and Bobby , Kasey and I were with him. Clay was finally free of the pain and of the cancer. Our pain, however, was just beginning.
Clay had fought long and hard and he had done it with such determination , strength and humility. He had not wanted attention and he had not wanted anyone to feel sorry for him. He had never asked, at least not out loud, why this was happening to him. Having cancer never made him question his faith in God. Clay believed that he could beat his cancer. No matter how many things went wrong and no matter how many times he was given disappointing results, he never gave in and never gave up. Having cancer and being so young had a tremendous effect on Clay, both mentally and physically. He held a lot in while the chemo changed his physical body but he didn’t complain. For so much time of Clay’s journey he was on crutches and not able to participate in the things going on around him. There were some beautiful days that would have been perfect for him to play some golf or work at the job he loved or wash his Jeep or do something with friends. If it had just been the cancer holding him back then that would have been one thing but on the days that he felt pretty good he was still limited because of his leg and the crutches. So many people noticed and commented on Clay’s smile. Yes, it was a beautiful smile. I continue to be amazed at the strength and courage Clay showed throughout his sickness. We are so very proud of him. Our common sense tells us that Clay is no longer in pain but are hearts are completely and utterly broken. We miss his smile, his off-hand sense of humor, how aggravating he could be, his stubbornness, his hugs, his presence and his love. . . we miss him. It’s a hurt that will never go away.
Family, friends and even strangers have been so good to us during this journey with Clay and afterwards. They have prayed for us, provided emotional support for us, checked on us, hugged us, loved us, worried about us ,visited us in the hospital and fed us. We have truly been blessed and we are so very appreciative of these people and of their many acts of kindness.
Our family will always be always be extremely grateful for the following people at UNC Chapel Hill Hospital . . .Dr. Stuart Gold, Diana Gordon, Ginna Messer, Dr. Robert Esther, the nurses in the cancer clinic and the nurses on 5 Children’s. We’ve spent a lot of time with these folks. These people are so compassionate and are so good at what they do. They always treated us as their own and I guess that we actually came to be part of their family. Clay did labs and scans very often at UNC Hillsborough campus and everyone that we interacted with there was great, also.
Although our time with Hospice was shorter than we wanted, we found them to be so knowledgeable, helpful and calming. Our sincere gratitude goes out to Patti, Stephanie and April. Thank you for doing what you do.
I never considered that cancer would touch my family but it not only touched it, it took our Clay away from us. We don’t feel whole anymore. So, please, if you can donate anything, no matter how small, it may help another family not have to experience what ours has and feel like ours does. There are so many people that have already helped us and I feel badly asking for a donation for childhood cancer research but I hope that this money will help to find a cure for this terrible disease. If you can help, great, and if you cannot, we appreciate all of you. Thank you for taking the time to read this.