My story started in August of 2000 when my eleven-year-old son was diagnosed with Osteosarcoma which is a bone cancer that usually targets children. At the time I was a single parent raising two children in Jackson Tennessee and worked at a company named Maytag. Life was pretty simple, and there were few challenges at the time. Work and school kept us busy during the week and pizza with a movie were our Friday night routine.
I have two sons whose names are David and Ben McDonald. David was fifteen in August of two-thousand and Ben was eleven years old. David was getting ready to drive and spent most of his time studying the driver's test, and Ben spent most of his time with his friend John. David had friends but didn’t spend as much time with them as Ben did with John. Ben and John were inseparable and did many things together including overnight stays and going to the movies.
As Ben and John were getting ready to return to the school year in August, they planned a celebration night with John’s mother as the summer came to a close. It was going to be a sleepover with his friend along with a movie matinee on a Saturday with a cookout to follow. Ben was just about as happy as a boy could be except for the fact school was starting soon.
I received a call from John’s mother saying that Ben had fallen at the theater, but he seemed to be okay. Naturally, I was concerned and wanted to make sure that my son was not hurting. I received no more calls and assumed Ben was going to be okay. The next day there was little if any concern when I saw him come home and there was no issue. I thanked John’s mom for calling me and letting me know Ben had fallen.
Soon afterward Ben and David started school as normal with the anxiety of beginning a new year with new teachers. There seemed to be excitement and frustration all at the same time, but all of this was normal especially with boys. I was excited as well since with the new year I did not have to worry about them being home alone even though we had awesome neighbors who checked on them daily. The schools were local, with no reason to be concerned with violence.
During the second week of school, I received a phone call from the school saying that Ben had fallen again. This increased my interest even though the teacher stated that Ben was okay. This was now two times that I learned that Ben had fallen for no apparent reason. My next decision was to carry him to our family clinic and get checked out. I wasn’t worried about anything major, I was afraid that the night at the movies he could have possibly fractured his leg.
The doctor didn’t seem to be concerned either stating that Ben probably had a bruise of some sort. Ben then said that he wanted to play Pee Wee Football so for curiosity our doctor ordered an X-Ray.
The following is from the book “God of the Storm”
The following Monday I took Ben to school with an excuse and returned to work again just like any other day. This day was different though since I came in late, I had to work harder to catch up and get production going. I was at work for just a little while when the plant manager came on the floor and said for me to call the physician's office to discuss something about my son and it was urgent. "Oh, my gosh!" I thought, he has been walking on it all this time, was it at the movie theater or school? Is it fractured? I was panicked and raced toward the front lobby at work to exit the building. I called the office, and they instructed me to go pick up Ben and come to the clinic and take his x-rays to Jackson. Once I got there, I was told to meet a physician at Jackson General Hospital and for me not to delay that it was urgent.
I was nervous scared, and whatever else you could mix in there. I didn't know how long this was going to be, so I went to the other school and got my other son David since he was in high school in another location. I did not want him to be alone when he got home. I went to the emergency room and told the nurse that my son has a broken leg and we needed to see the physician and that the Family Clinic in Lexington sent us. The wait was horrible, to say the least, the ER was busy, and the waiting was nerve racking. In the back of my mind though I was relieved because if it were serious, they would have seen us sooner. So now I am looking on the positive side.
Finally, after it seemed forever they called our name, and we went back through the doors and what I expected was for him to get a cast and we all sign it and return home. A simple cast on his leg did not happen we were placed in a room, and we sat again waiting and waiting. The time was going by, and nothing was happening a nurse came in and got his vitals and ask what was wrong and out of frustration I ask "you tell me?" She chuckled and said ok hold on, and a physician will see you shortly. After what seemed like hours a doctor came in and asked Ben several questions which mainly focused on the type of pain he was having. Ben being the trooper he merely said "oh I'm ok" and this was about all he would say.
The waiting began again, and a physician came in and said he needed to talk to me so we went out into the hallway and he stated that we had an appointment with an orthopedic in the morning and it was urgent we be there. I was outraged, very angry because they didn't even put a cast on this baby's leg, why? The doctor calmed me down by saying he was ok for now they want a second opinion, and he would be ok to walk on it. We walked outside and I was shocked it was dark not only that but it was ten o'clock, we had been there all day!
The next morning, I kept David out of school again because if today was going to be like the day before then, I needed him with me. We got to Sports Orthopedic and Spine in Jackson early around nine as I remember and the waiting room was already full. I could hear mumbling about how long it took to see a physician and then I thought "oh no not again." This visit was the first time we had been here, so I got the paperwork and prepared myself to read a hunting magazine or two. After I had started to a seat with the boys, I heard Bens name and immediately I thought something is wrong. We would not go back so quick if everything were ok.
We walked back, and the atmosphere was scary, to say the least, but here I was jumping to conclusions with absolutely no information. I sat down by Ben, and we started to talk about funny things to break the fear that was apparent on my face. Ben said in a calming voice, "Daddy everything is ok" and I then reassured him that he was right and we didn't know anything right now. David seemed sort of distant from it all is staying to himself and I am not sure what he was thinking at this point, and I was starting to think that he was the one with his head on his shoulders and not me.
Soon the physician came in and asked me to step outside in the hallway with him, and I knew then that this was not good by him doing this. "Your son has a large tumor on his lower right Femur, " and I asked, "what does this mean?" His reply was direct and simple "There is a good chance that your son has cancer." The earth stopped turning for a moment, and then I realized this had to be a dream it had to be the worst nightmare I have ever had. "Ok tell me what you know and what you don't know" is what I asked him and he responded with this sentence "Your son has a tumor, and it could be cancer called osteosarcoma." I could not even pronounce it at the time much less know what he had just said. "Can he die from it?" I asked "Yes," he said, "there is that possibility." I went into the room and told Ben to hold on a doctor was coming and I raced to the waiting room and grabbed David and took him outside to the parking lot. I held him tight and just cried with no words coming out of my mouth. I didn't know what to say, but David understood as a young teenager that this was not good.
Little Ben was still inside not knowing what was just said and just waited on my return. When I returned Ben just looked at me and said "daddy it's going to be ok whatever it is it will be ok" this was coming from an eleven-year-old boy, and all I could think of is how mature he was, but at this moment right now he doesn't know anything. I must tell him what I knew, how on God's earth does a parent tell their child they have cancer? The only way I knew to let him was just come out with the words, "son you have a tumor that could be cancer" is was said. It was all out in the open, and he looked at me and said "OK." He didn't understand, and I did not know how to explain it to him. The physician came in and explained all he knew at this point which was little except that he had a tumor and the belief was it had cancerous cells in it.
"We need several tests over the next couple of days, I will call your place of employment and explain what is going on" is what the physician said. What am I going to do? I am a single parent! God, why do you tear me down every time things get to going well in my life? Why my son? Questions, questions, and more questions what about answers where are they? I had decided that we still need more information at this point, so I chose to hold off for two days and gather more information so that I was not telling things that I did not know.
A biopsy, MRI, at CT scan and whatever else they did in the next two days was almost a blur with all the information that come my way. Decisions I had to make was necessary and took a lot of thinking to make sure they were right. "Nashville or Memphis?" asked the physician "I don't know where to go" and he replied, " only you can decide that they both have good programs the decision is yours." Ok so now I am going from working in a factory to being a medical professional, "I don't know, tell me?" and he said that Vanderbilt in Nashville had a good osteosarcoma program and if it were my child I would go there. "Done, that is where we are going" period, let's go. Should I have taken more time to research, yes but information was coming at me so fast that I didn't know which way home was now much less a children's hospital. Later I learned that Saint Jude in Memphis was second to none in this area, but once a person starts a program, there is no changing our minds.
The time had come to tell the family, and I couldn't do it without breaking down in tears. They were just afraid as I was and they were asking questions, and I didn't have answers. I had to fill out forms at work for FMLA and schedule appointments with Vanderbilt Hospital. Get things in order at home and figure out how bills would get paid during this time. Sometimes a person can't wonder how it is going to be done just do it and let the dominoes fall in place. Or as we Christians call it trust in God. God says not to worry but with all this how do you not?
Planning was difficult because what do you plan for? The only thing that I knew to do was to keep a good outlook for Ben no matter what I felt I had to be there for him. I also could not forget that there was another child and what was I going to do with him? I could not let him go and miss school during these hospital visits; I had to have a plan for him too. I was concerned because there was enough pain to affect the whole family and I didn't want him to feel more than we did.
The family was coming together to help me plan and get things together; the family decided that David would temporarily live with his uncle who was Judy's brother and go to school from there. I tried my best to assure him that all of this was temporary and that things would be normal again and that this was not like before. He seemed to understand and was happy to be with his uncle and so was I because I knew he would be ok. So, I had David settled with family and felt that part would be ok. He had to change schools once again and go to Bolivar, but this was minor since he had friends there. This time was different, though, and he understood. I had to enroll him and explain the circumstances, and the school seemed to know our situation.
The trips to Nashville would be long since the drive was about hundred and seventeen miles from our home to the hospital. Once the decision was made Memphis would have been much closer but I wanted what was best no matter the driving distance. My mother lived just off the interstate some 90 miles west of the city of Nashville, so the plan was to spend as much time at her house as possible which would cut down on drive time and easy access to the interstate if there was an emergency. After all this planning that only took about a couple of days, we were ready for our first trip to Vanderbilt to see what was ahead in the future.
People started calling offering support and asking questions, and at this point, I had no information to give them. I remember wishing they would not call until we knew more but did not want to be rude, so I was in that "I don't know phase" every phone call I was using that phrase. It is tough when you know your son has cancer and now wait. The good thing, I was medicated and could hold myself together for Ben. Being in this condition helped me make better decisions and stay focused. It would have been devastating now to make a wrong decision, and every decision came with a prayer. I remember thinking that maybe all of this was in the master plan to prepare me for what would be coming and if so I was grateful. If I had found myself in this condition, I was once in the ability to control myself would have been non-existent or the knowledge to make snap decisions. So, for whatever reason, I could now plan and make decisions with prayer and understanding. God provides a path in the storm.
I then started asking questions myself and was learning more than I wanted to know. I was hearing horror stories on these children's hospitals that I could have just as well not heard. Things like how chemo affects children and how children suffer. The stories were more than I wanted to hear and the fear had built up inside of me, and there was no way Ben was going to see what I felt inside. My goal at this point was to be positive and make this as easy as I could for him.
The day came that we went to Nashville, and I become lost as I could be I did not have GPS or any map directions only what people had told me and their directions, but with the help of my mother, we found it. My mom had gone with us since I knew if the news were bad I would have someone to drive if needed to be. I had x rays and test results to give to the physician and was a nervous wreck. We found the hospital and then proceeded to find where we would go because Vanderbilt was such a huge place and so many directions to go. I felt if I was in a maze of clinics and there was a clinic for about every ailment you could imagine. We were scheduled to go to the adult orthopedics clinic and the physician there was considered one of the best in the country, so this was the starting place for the road ahead.
I am going to break right here for a moment and say over the five-year period that we dealt with this disease there were several physicians that I would consider the best of the best. The number was so high I could not name each one of them and in saying that I am not going to mention names since I do not have permission to do so. So, during this story, I will refer to them simply as physicians and good ones at that.
We went to the clinic and registered then prepared for a long wait, and when it became our turn, we had only been sitting a few minutes. The nurses were very professional, and the first visit seemed to be as relaxing as it possibly could until the physician stepped in. He spoke with us a minute and asked why we were here which floored me, and I showed him the x rays. His response was a bit surprising when he said: "Do you know how many doctors sends us patients and tell us they have cancer, this could simply be an infection." I was a little upset by this statement. I had spent all the time planning I had moved David's school and talked to utility companies. Why? I felt for a short moment that the clinic in Jackson had given us false information. He took the x rays with him to another room and was back shortly afterward. I had been angry and happy at the same time, what if this was only an infection? He had a grim look on his face and said that it was not an infection and that it was cancer and aggressive at that. Another biopsy which would be performed by him he had seen enough information to decide. I had wished at this moment however that he would have kept the earlier comment to himself until he knew the outcome. "We need to get this biopsy complete, and chemo started right away" is what he said, and the feeling of any happiness at all was gone that quick. In thirty minutes I had been on a rollercoaster ride of emotions that challenged my ability to keep my temper at a minimum. I did not want to know anything until we had facts! A biopsy? What if it were to come back as infection! What a miracle that would be!
Going home sharing the news was tough. It was worse than initially hoped for, and the chemo team was preparing his regimen to get started even though I wanted to know the results of the biopsy he was very certain it was cancer. We had to wait a week for the biopsy and the chemotherapy shortly afterward. We had to wait for this to happen and the wait was a tough one since the horror stories that we heard were about to come to life. What will I do and how will I get my son through this and most of all how do I hold this family together? Again, questions that I could not seem to answer and answers that didn't make since. Why cancer why my son?
I went through the house throwing away every medication I had because I wanted to feel my son's pain and not leave him out there alone. I remember screaming at the top of my lungs God you must take care of me now I am not a zombie! Quitting pills suddenly could have been a mistake, but all of this is no longer about me it is about my children and their need to have a dad that feels their pain. They deserve a daddy that does not hide behind the curtain of life with drugs; they need someone that is willing to step up to the plate and be strong in the time of crisis. They need me and not some zombie that is afraid of life and the decisions that I had made in a time past. At that moment, I turned around and found a force deep inside of me that was stronger than I was and stronger than any medications that a physician could give. The force was God it simply had to be. If a person makes this decision they crash from a sudden stop of meds, I didn't. I never felt any withdrawals of any kind, and it was important to be there for Ben in his most difficult time in life. I had been on medications now for three years, and now I should depend on God. For everything.
Cancer is something that will change your life and make you an entirely different person, or in my case it did. My life with my children changed ultimately making decisions to ensure that the both of my boys were safe. This took help from a Mighty God to see me through the valley of life. Decision making is not easy all of the time as a Christian, but God allows the trials to take place to build our strength and relationship with Him.
As the chemotherapy started Ben and I was both afraid of the potential side effects of the medicine. Before we began each regimen, we prayed for Gods healing power. When I think of healing today, I don’t think of a person getting up and walking or a blind person seeing for the very first time. I look at it as Gods will and whatever He desires of me. An example would be like our case with Ben, God was using him for His will, and through Ben, many have come to know God so this would be an example of God’s healing power.
In my book, I used some quotes that I wrote down in the battle for life, the very first round of chemotherapy was horrible, and the following is what I wrote the night Ben started his first regemen:
"The chemo has begun, and Ben is already getting sick. I want to change places with him, Lord, why can't I? He is such a good kid and must endure so much pain. He has thrown up more than his body could have ever received. Where, is it coming from, God? How long can he handle this? This sickness can't be happening to him and why him and not me I am so scared of this. Please take this burden from him"
Fear can consume a person if they allow it, so I prayed and prayed for a release from the fear around me. God helped me daily understand His purpose, but my human nature was hard at work. Battling the disease at times created a fight within myself more than any other reason. Ben was confident that everything was going to be okay, but I wrestled with the fact that he had cancer. Cancer is a deadly disease, and it scared me so much thinking that I may lose my son.
In my fear come peace as well in the form of people. I met so many wonderful people that I could not believe how great they were. In my book I focused on some of these individuals:
There comes a time in life when every child that receives the diagnosis of a terminal disease has an opportunity to have a wish granted through the Make-A-Wish Foundation. Make-A-Wish, founded by a few DPS officers granting a wish for a young boy with Leukemia named Chris Gracious in central Arizona in 1980. Sadly, Chris died at the young age of only seven and a half years old, but the beginning of something great began. Many of the donors today wish to remain anonymous for one reason or another but the wishes granted brings joy to those children that suffer from these diseases.
Ben was no exception to this he was so excited that he literally could not contain himself when it came to the dream of a lifetime. He was not the average young man that you may think of, but he was different in preparing his wish list. I become determined that whatever Ben decided I would be supportive of one hundred percent on whatever this young man wanted. Now, of course, the wish that he had made could not bring harm to him anyway, or that may affect his treatments. He would want to go to Wal-Mart and just look at whatever he could dream up in the aisles of the store, "what about a vacation?" I asked, and his response would be that it would be over in a week and the wish would be gone. "What about a cruise?" No that would be gone too, he would say. So, the idea of any vacation was out of the question because they just didn't last long enough in his eyes.
Living in the country meant that we would go to the local garden store sometimes and get plants to put in a mini garden we had at home. We all loved tomato sandwiches in the summer and fall of the year as a special treat. Sometimes we would go to just look around and dream of the warm months of the year by looking around the store. Ben loved Zinnias and planted them every year in the front yard, and this would become his favorite flower. While we were out and about looking around, we drove over to see what was there so. We were just killing time in the store. Just then Ben saw a go cart out in front of the garden store that he fell in love with and he realized what his wish would be. The machine had guard rails and big tires that made it look like a beast of a ride especially in the country with vast open fields to play in.
I contacted the ladies in Memphis that handled the Make-A-Wish decisions and ask their opinion about what Ben had found, and they said that they would be in touch to let me know. A couple of days later I received a call from the office, and they stated that they felt that if I thought it was safe for him that they would be ok with it as well. I explained the features that we had found on this machine and where we had seen it, and they said that they would take it from there. I was so excited that this dream would be coming to life for Ben in the middle of the pain and sickness of the treatments.
As the planning started Ben had to return to the hospital for another treatment of Cisplatin which was the dangerous drug that had made him so sick before, and we were dreading receiving this treatment again, but we had to stay on course to be sure that cancer cells got attacked successfully. The stay ended up being a long one because of certain complications that had come along with it. I will get into these details later because the one thing that had kept us going was at the other side of the stay was a dream for a child that had a terminal disease.
The planning was taking place, and Ben knew very few details in the planning phases of the wish. The ladies who were volunteers kept me informed what was about to happen and you could hear the excitement in their voices as they spoke about the details. I could not wait to see his face when the time come, and one thing that I felt would be important was to include his mother in all of this. She had as much of a right to be a part of the wish as anybody if not more and so I felt that it was the right thing to do. I spoke to her and let her in on the details that were about to happen, and she thanked me for involving her in this beautiful time.
My stepmother owned a furniture store on the east side of Bolivar where she sold used furniture and collectibles of many kinds. The store was a busy little place bringing in those that were looking for a bargain or just like to rummage through the various items she had collected over time. It was about three thousand feet of space to arrange the items for sale and that she had placed strategically around the store on shelves that my dad had built. We went there often to just sit around and meet the customers as they came in and out of the shop. Ben loved to visit, sit behind the counter and talk to some friends that wandered in from time to time. Going there would be no surprise or give away for Ben when the wish started to take shape. "Let's go see Nanny and see who's at the store" is what I had said to him when we were planning this part of the wish. Nanny was a name selected by the grandchildren to call my stepmother.
I had contacted family on both sides to let them know what was going down and most agreed to be there. Judy's mother Dora, Judy and some friends were there along with my parents and stepparents who were very close. Ben, David and I got there later once everyone congregated inside and waited for our arrival. When we arrived at the store, everyone was in place preparing for this treasured event that was about to take place before our very eyes. Ben was surprised to see the family at the store, and everyone dressed for the occasion. Ben had on his favorite cowboy hat that he loved to wear out when we were going places since he was a cowboy at heart.
Even though he was surprised to see everyone he still had no idea what was about to happen. He asked me what was going on and I said: "I don't know maybe everyone wanted to come to the store." I know he knew better than that, but I think he was thinking that we were throwing him a party of some kind. The initial wish meeting had taken place some time back, so the idea that was in his head had settled down a bit over time.
We were all sitting at the store talking when a limo pulled up in the parking lot, and Ben asked: "what are they doing here?" We all laughed and told him to go outside and see. The driver got out with his tuxedo and little black hat and asked "I am looking for a Mr. Ben McDonald" Ben was shocked and just looked up at me, and I said "here he is" The driver walked down the side of the long white limousine and opened the door. "We are going for a ride," said the driver and Ben was the first to jump into the beautiful white limo that set in the parking lot of my stepmother's store. I know the presence of it there turned many heads passing by on the hi-way.
"Where, are we going," Ben asked, as we piled into the car and settled in. "What is your favorite restaurant?" is what the driver asked as he turned around to greet Ben. Ben did not know what to say because I think that if he thought said the wrong thing he would be embarrassed. Then I asked him what's your favorite restaurant. "I don't know " he was afraid to say, I think. Then I asked him where did he want to eat every time we went to Jackson. Then he said "Barn Hills" which was a buffet type place that he always wanted to eat at when we went out. Ben would kid around with the hospital staff during chemotherapy treatments saying he could not wait and get some Barn Hills food when he got home.
The driver stated that we were going to his favorite restaurant, but we weren't going to Jackson. Instead, we were going to Memphis, and he asked him to sit back and enjoy the ride. The car had every gadget imaginable, and Ben was trying them all out. A sunroof to allow air to come in and others that my memory fails to remember nevertheless, he was having a blast in the back seat. Other drivers along the road were looking to see what was going on because it wasn't every day that a limousine came through Bolivar. We felt like royalty or a high-ranking government official coming to town. I remember Ben said at one point that he felt like the President.
My thoughts were spinning in my head thinking that this was the first time that our family had been together for a very long time and it felt good. David, Ben, Judy and myself were riding in the car together, and I just sit back enjoying the ride. It was almost like getting into a time machine and taking a trip to the past when everything was ok, and I remember thanking God for this one golden opportunity just to look out and see the family laughing and playing. I think that maybe there were two wishes granted that day one for Ben and one for myself. Even though Judy was happily married and I knew there was no reason even to think such a thing we were together this one moment in time.
The trip to Memphis was a good one with many memories of that trip still trapped in my mind till this very day, and I think of them often.
We had finally reached our destination point which was a little buffet house called Barn Hills Restaurant. The trip from Bolivar to Memphis was about sixty-five miles or so and that calculated to about an hour ride. We were at Barn Hills, Bens favorite place to eat and people looked amazed at what they were seeing. A limo in the parking area at Barn Hills country restaurant? I felt like they were saying or thinking to themselves "who would ride to this place in a limousine?" A child with a wish that's who would do such a thing, now if that is what they were saying or thinking I don't know but that is how I felt.
The family had followed us the distance of the trip, and we all met the volunteers outside the front door, and it was a happy time indeed. We paraded in as if we owned the place and took our seat with Ben at the head of the table. While we were eating, the volunteers gathered around Ben and started passing out gifts as if it were Christmas and Santa had come to town. The good thing about this excellent foundation is that they did not leave out my oldest son David. They included him in on the festivities as if he was a recipient as well and the volunteers were amazing, and I thanked them all night long. Tears filled my eyes with joy and the thought of this night ending was a sad thought but like with anything all good things must end.
We ate until we were all stuffed to the point that we had been at a king's feast. The thought of seeing food after that night of excitement made us turn away anything they could bring out. The night was winding up with Ben standing up and saying thank you to the ladies that had made this event come to life. We wanted to know the person responsible for this beautiful evening, but they stated that they wished to remain anonymous. I believe that the individual or individuals responsible were sitting in that room that very night. I wanted so badly just to say thank you for what they had done.
As we started to part our ways we said goodnight to the ones that had been so gracious for giving their time and friendship to a family that so desperately needed it. I was so happy to be part of such a fantastic event and tears would not stop running down my face. Our last goodbye was a hug of gratitude, and we walked out the door. My dad and stepmother had driven their Dodge truck, and it sat in the parking lot, and another was sitting right beside of it. In the bed of the other truck, was a go cart. Not only was it a go-cart it was a "wish come true "it was beautiful sitting there in the back of that truck. It had flags sticking up with one on each side and a helmet sitting in the seat. One of the volunteers looked at Ben and said "it's not over yet, " and the excitement that he had on his face was priceless.
We unloaded the thing that had made Ben so excited right there in the parking lot then he climbed in and wanted to take a ride. Now, of course, this would have been a bad idea in such a populated area, and the last thing we needed was another accident to take place. Ben had to be patient and wait to ride his gift of love from such caring people that had made the night such a success. Pictures taken by all of us and memories etched in our minds forever, seeing a young man so happy. I looked over at David to make sure he was ok and did not feel left out of this grand event, and he looked at me and grabbed my waist. I asked if he was ok and tears rolled down his cheeks and said: "he's going to die, isn't he?" I just looked at him and said enjoy the moments we have now and do not think about it.
The trip home was not as exciting as the journey there, but we were all happy to have had such a good day. Ben was still excited about being able to ride the limo back to the place to where we had started from even though he was exhausted. The wish had been a successful way to see him as excited as he was that night in Memphis. The planning had been impressive and well thought out by the volunteers that had given their time to see a boy they did not even know smile just one time. We later sent a thank you card to let them know how much we appreciated their time and efforts in planning this special event for a boy who had a life-threatening disease. I did not ever get to cross the paths of these ladies again, but I feel that a beautiful place is in heaven for people who give their time the way they did that night.
When we returned, it was kind of sad to see the limo drive out of sight because it reminded me that the fun was over and it was time to snap back into reality and focus on making sure we did everything we could to save the life of this young man. It was good to have these types of moments and escape reality for just a little while.
I realized that there were so many good people left in the world and we were fortunate to come in contact with many of them. Actually, there were so many they were too numerous to list here. Without these individuals, there would have been no way Ben I could have made it. As I mentioned in my book, there were times that I would go to the mailbox and there would be a check or a card for traveling expense and meals.
The journey was not an easy one since I had to make arrangements for David as well. I didn’t get to spend much time with him, and this caused a distance in our relationship:
After another visit to the hospital, which was a general checkup, we were excited to get home and tell everyone the good news that Ben had a good report. When we rounded the curve to come back, I saw several deputies at my house, and I was at first scared of what had happened. When I drove into the drive, I saw David in the back of one the cars arrested it seemed. I ask the officers what was going on, and they had told me that several items in my house had been taken in a theft ring. My fear turned to anger in an instant when I heard the news. So now I have a son sick and another in jail, and there was nothing I could do even if I had wanted to. David had used my house to harbor stolen items. With Gods blessings, the deputies knew me, and there was no reason for them to suspect me of any wrongdoing. If they had arrested me, it would have been catastrophic if I had gone to jail with Ben needing me so much. Even though the chemotherapy was over, there were still precautions that had to be taken care of daily.
I laid in bed many nights crying for my children because even if my son was guilty, I still loved him with all my heart. I felt helpless laying there wanting to save both of my kids, and there was nothing I could do but pray. Later we found out that David did not steal anything thing, but he was a victim of hanging out with the wrong friends. The news that he was not stealing was a comfort, but he was still guilty as an accomplice to burglary for harboring the merchandise that totaled more than twenty-five hundred dollars.
It was difficult with two children in two different places and nothing I could to do about it. I wanted so bad to wake up from the nightmare and resume life the way it was before, but this was a faith builder, and God uses these test to build our faith even though I couldn’t see it at the time. There were even times that God used a situation to remind me of how fragile life is. A friend of Ben’s came by to see Ben, the young man seemed so sad that Ben had cancer and felt guilty that he was normal and had his whole life ahead of him. A few day’s later the young man lost his life in an ATV accident. This news brought, even more, fear at the time. I sympathized with his family, and the guilt of not saying more to him consumed me. I prayed that he knew God and believe to this day he did since he was so compassionate about Ben’s situation.
David went to jail, and Ben received the news that the cancer was terminal and he had only six months to live. Our daily lives were focused on God every day we lived, and Ben thanked God for every breath daily. The holidays of 2004 were trying, to say the least, and I wanted Ben to have a wonderful Christmas, so we started decorating before Halloween in case he didn’t make it to see Christmas:
After making it through Halloween, the church surprised Ben with a birthday party and even though Ben had tried very hard to smile and be happy I could tell he was experiencing lots of pain. He had started wearing a pain patch that contained Fentanyl which was a super painkiller from what I understood. The pain patch became a daily medication Ben had to take just to live with the pain, and we even had to move to more pain patches to control as the pain progressed. The pain would sometimes be so severe he could not move, but he would always squeeze out a smile when someone entered his space.
People tried their best to do what they could to cheer my son at his birthday party yet I could see tears because deep in their minds they knew what was about to happen. I had to remain strong and be the daddy that I knew I had to be. Several people were there including close family members, church members, the hospice team and friends from school. Under normal conditions, the party was a huge success, but with the pending diagnosis, the mood in the room filled with sadness. It's difficult to bring joy to someone who is facing life in these conditions, but it was everyone's plan to bring as much joy as they could.
The night was overall successful with gifts and cards wishing him a happy birthday. However, the problem with that was the many more part. Ben was limited to a few short days "if that" unless God performed a miracle in the very near future to extend Ben's life. The "miracle" everyone wanted, looked doubtful. Ben was slowing down fast and appeared to be tired all the time from the disease. He was pale, and his limp had become more noticeable with pain when he walked. Everyone could see his condition was declining fast. Even though this pain was extreme, he would smile as if he was ok. The smile he carried with him give him a testimony that no matter what happened Ben would be OK.
Several children on their sixteenth birthday get a car and license to drive providing families can afford it and in my condition, I couldn't. I did find an older model Chevrolet Cavalier that ran good but did not look very well, but then one of the families at church donated an older model Firebird that put a huge smile on his face. I was not worried about insurance or anything like that because I just wanted to see Ben smile no matter what it cost. The car would not be moved from the driveway since Ben could not drive, but the idea of it being there made him proud.
Ben started studying for his driver's license test so that he could be official behind the wheel of a Firebird and I did all I could do to help him pass the test. It never happened because his health was declining and his ability to safely drive had become an issue. He wanted so bad to pass the test, but he was too sick each time we planned to try. Finally, one day we had made it to the drivers testing center, and we went in, and Ben nearly passed out standing in line. Sadly, we had to leave with no license, and this was our final attempt.
After his birthday, Thanksgiving was approaching fast, and we were having our feast right there at the house so that Ben would not have to leave home. There were more people there than the house could comfortably hold but we made it work the best that we could, and we got by. Hunter was part of the family now, and even though Ben had not spent as much time with him as he did with Roper, he still took the time to play with him even during times of sickness. As everyone gathered to eat Ben stayed in his room with Hunter, and I carried him food, but he had lost most of his appetite for anything to eat. I had thought that just maybe he would eat since it was Thanksgiving but he just was not hungry. I noticed it a little strange because in most cases when there is that much food around with a dog in the house that the dog would be right there with the food. In this case, Hunter stayed right there with Ben and lay by his bed. I think he knew something was wrong and refused to leave Bens side.
Ben wanted to go shopping on Black Friday, and I was all for it hoping that it would make him feel better. We got up early and took off to Wal-Mart, Ben's favorite place, and fought the crowds. I purchased a pool table that Ben had wanted and come home and put it in a twelve by twelve bedroom. The pool table was tight, but occasionally, Ben would get up and shoot a little pool with family and friends. One of the more unusual times was with our pastor Brother Adrian had come to visit as he always did and Ben wanted to play a game with him. The game made our pastor euphoric and talked about that night many times afterward. Later that evening Ben started to hurt and the tumor was continuing to grow, but this time he was breathing very shallow. So, I prayed very hard, and the family had called the hospice team in to see him. The team met with me privately and said to me that this was it that Ben would go anytime now.
The night was long, and we all sit up waiting and praying the only way we knew how. Occasionally the team would step in and check on him and report to the family, but I would not leave his side. I sat in a chair and would read to him from the bible and pray as if we were in our regular Bible study. In the early morning, the family asked me to come out and get just a little rest, and so I decided to come out just for a little while and eat a little food then visit with some that had come in to check on us. The nurse explained that any moment would be the time and as she was saying those words Ben came walking out of his room and said he was going to sit on the porch swing. We all looked at each other in amazement and then out of nowhere started to laugh. God is not done with this boy yet, and Ben began to feel better then he came in and sat with the visitors that had come over.
Ben had surprised everyone with his ability to get up and move about as he often did but the energy that he had found did not last long. He was back in bed where he spent the most of his time. There were several nights that Ben would scare us, and would get up and start moving about again. The nurse had told us that he is strong and even though he has cancer and it is getting him down his organs are still young and active. I don't think the hospice team had experienced very much when it came to children because Ben would always seem to surprise them.
As Christmas come, people were bringing, even more, decorations and placing them outside in the yard and would stop by and see how we were doing. It was Christmas, and I feel that everyone was expecting a miracle even myself at the time. Ben's faith was strong, and we did not stop reading the Bible daily, and most of the time it was several times a day hoping to find something in the pages to give us hope.
The decorations had multiplied so much outside that there was hardly a place to put anything, so people then started to bring them inside. They would bring the parts to a village, and after a while, we had a Christmas Wonderland right there in the living room with decorations everywhere you could see. My mother had started decorating one of the walls between the living room and kitchen and Ben got up out of bed and helped her string up the lights. Ben was very sick, but his love for Christmas had not stopped, and he wanted to celebrate it to the best of his ability.
Ben was a giver when it came to Christmas and even though he was sick that did not change at all. He wanted to go to Wal-Mart and get me a gift even though he was very ill and the best I can remember one of the family members had taken him, and he had purchased me a tool box with money that HE received for Christmas. I wanted him to buy things for him to make him happy instead he was buying for me. Ben spending money on anyone but him made me feel awful but as the family had told me this is what made him happy.
The tumor was still growing under his arm, and it had got as big as a baseball and very noticeable, but even still Ben said there was going to be a miracle and so we continued to read and pray. Maybe a miracle was going to happen, and the tumor would start shrinking and completely go away. I prayed for a miracle all the time day and night. Many times, I would not leave Ben's side, and when he would sleep, I would just sit there and cry looking at him sleep.
The pain medicine had increased to levels that an adult would take and more. I did not know how he took as much medicine as he took and still functioned as well as he did nevertheless Ben would surprise everyone repeatedly by getting up and visiting with company. Several people were coming by to say hello and check on him.
On December, the twentieth Ben had taken a sharp turn for the worse and again the nurses, the Chaplin, our pastor and all the family had been asked to say their final goodbyes. I remember that the nurse told me that if you wanted to have a Christmas, you ought to do it now while Ben was responsive and alert. So, I made the decision to go ahead and have Christmas a little early. Ben once again had gotten up out of bed and come into the living room to open his presents along with everyone else. This time was different though because he was on so much pain medicine that his body was weak and his speech slurred a bit. I wanted to be happy as much as I could, but this was tough because now I knew the time was drawing near and the possibility of him making it through the holiday was slim. All the family was there along with David, aunts, uncles, grandparents and friends. David was very much in denial of the whole situation, and I think that he tried to avoid the truth and believed that his brother was going to be ok.
The gift giving was over, and I opened my gift which was a tool box. Ben wanted me to have a gift under the tree, and this one gift adjectives couldn't describe how I was feeling at that moment. I knew that he had purchased this out of love in his heart and he wanted me to know that he loved me before he said his goodbye. I shed many tears that night after he had gone to sleep and the family along with the hospice team had stayed up very late monitoring his condition. Everyone was expecting the inevitable but somehow the night passed and the morning had come.
I prayed that Ben would make it through Christmas even though we had already opened the presents and went through the emotions of a happy Christmas morning. Bens breathing was shallow, and his pain was growing uncontrollably with the pain medications he was receiving from home. Many times, I was afraid that he would overdose on as many pills he was taking to control his suffering.
Somehow Ben had made it to Christmas but there were no gifts to pass out and no happy faces glaring at presents under the tree waiting to be ripped open instead Ben, and I was there in his bedroom praying. I did the only thing I knew to do, and that was to read from Luke chapter two the Christmas story on Christmas morning. In Ben's mind, Christmas was over, but I knew it wasn't and that it was here. It was tough reading the story because as hopeful as I was the hope was starting to fade as every hour that had passed. My hope had begun to turn to anger watching a precious child suffer the way that he was and God was doing nothing about it. I think I felt like Mary when she called for Jesus when Lazarus her brother was dying, and Jesus didn't show up. Lazarus died, and they had buried him before Jesus arrived but we also know that Jesus raised him from the dead as well.
Christmas had come and gone with no miracle in the holiday, only sadness. The time had come that I knew I had to make a tough decision and that was to get Ben to a place to where they had the ability to control his pain. I could no longer bear watching him suffer the way that he was and the decision had to come from me. The many talks that we had over the course of time left me believing that Ben wanted to die at home, but I could not fulfill that wish. I called the hospice team and told them that I could no longer do this anymore, and they quickly agreed with me. We had two options, and that was going back to Vanderbilt or staying close by at the Jackson-Madison County General Hospital. The family could be closer to Jackson for support, and I would be close to home as well. Making this decision was against Ben's wishes, but a decision like this had to come. I felt like the villain making such a decision and wish I could have decided on a better one, but with the situation, it was what I had to do.
Ben purchased this out of love in his heart, and he wanted me to know that he loved me before he said his goodbye. I shed many tears that night after he had gone to sleep and the family along with the hospice team had stayed up very late monitoring his condition. Everyone was expecting the inevitable but somehow the night passed and the morning had come.
I prayed that Ben would make it through Christmas even though we had already opened the presents and went through the emotions of a happy Christmas morning. Bens breathing was shallow, and his pain was growing uncontrollably with the pain medications he was receiving from home. Many times, I was afraid that he would overdose on as many pills he was taking to control his suffering.
Somehow Ben had made it to Christmas but there were no gifts to pass out and no happy faces glaring at presents under the tree waiting to be ripped open instead Ben, and I was there in his bedroom praying. I did the only thing I knew to do, and that was to read from Luke chapter two the Christmas story on Christmas morning. In Ben's mind, Christmas was over, but I knew it wasn't and that it was here. It was tough reading the story because as hopeful as I was the hope was starting to fade as every hour that had passed. My hope had begun to turn to anger watching a precious child suffer the way that he was and God was doing nothing about it. I think I felt like Mary when she called for Jesus when Lazarus her brother was dying, and Jesus didn't show up. Lazarus died, and they had buried him before Jesus arrived but we also know that Jesus raised him from the dead as well.
Christmas had come and gone with no miracle in the holiday, only sadness. The time had come that I knew I had to make a tough decision and that was to get Ben to a place to where they had the ability to control his pain. I could no longer bear watching him suffer the way that he was and the decision had to come from me. The many talks that we had over the course of time left me believing that Ben wanted to die at home, but I could not fulfill that wish. I called the hospice team and told them that I could no longer do this anymore, and they quickly agreed with me. We had two options, and that was going back to Vanderbilt or staying close by at the Jackson-Madison County General Hospital. The family could be closer to Jackson for support, and I would be close to home as well. Making this decision was against Ben's wishes, but a decision like this had to come. I felt like the villain making such a decision and wish I could have decided on a better one, but with the situation, it was what I had to do.
Sadly Ben lost his life March 20, 2005
My Pastor Brother Adrian would spend many nights talking about the Bible and life over the time we were there. He is a good friend and always was there for our family. As the time drew, near more people would come by to visit or help in one way or another. I welcomed any company that came by since the days were long sitting there waiting and praying.
Ben again surprised the doctors by making it another month now it was March, and he was alert, but in severe pain. One doctor came by and said that he did not know how he could open his eyes with the amount of medication he was on.
The month of March things progressively got worse, and there were days that Ben would be in another world while we tried to explain where he was. The struggle of watching him was almost as painful as being in some type of hell on earth. There were days that it was not as bad but most days were difficult. The tumor had a large hole in his back, and there was no way to cover the wound. The nurses tried, and I would help the best I could. Ben could not have a bowel movement, and he just wet the bed instead of even trying to use a urinal. We didn’t mind taking care of him since all I wanted was for him to be comfortable.
On March nineteenth Ben got even worse, and we could tell something was going on. We called as many family members as we could find and told them if they wanted to see Ben alive they needed to come to the hospital now. People started showing up and saying their goodbyes the best they could then Ben asked for me while I was in the hallway crying. I wiped and got myself together and walked in and ask what I could do. He just looked at me, and I rubbed his forehead since I could see the pain in his face. “Daddy?” he asked. I said to him that I was here. “Could you go with me? I wanted so bad to escort him to heaven and watch him sing with the angels. “I will be right behind you son, you have a sister there waiting for you,” is all that I could say with tears running down my face.
He fell asleep with the medications, and I walked out crying out loud. “It’s time.” The time was about nine o’clock. Ben slept for almost four hours when he started talking to people again with a weak voice. I was afraid and felt more alone than I had ever felt in life, what am I going to do God? Ben called me again, and I went to his bedside, and he said, “Daddy I am scared.” I took him by his hand and said this prayer, “God he is not mine he is yours take him now and watch over him and comfort his soul. I love him more than anyone can imagine. I love you, Ben.” He looked at me and said, “I love you, daddy.”
At three a.m. on the first day of spring March 20, 2005, an angel swept down, and Ben went home to heaven. Jesus said well done my child.
I stood in the hallway staring into space Ben was gone, and I was alone for the first time in a long time. My son is singing with the angels in heaven now.
It is 2017, and God has used this as a great testimony with several people being touched from the UK to Afganistan. Ben is still alive in spirit through me sharing his testimony. I praise God in trials today since they are steps of faith building and not some way for God to be punishing us as Christians. Faith comes through understanding Gods will and purpose. I share testimony services today through the internet and public speaking. With God anything is possible and death is not a curse but something perfect for a Christian who loves God.
I learned that charging money to hear our testimony was wrong and the word of God is free to those who need to hear His voice. I have to charge for the books due to publication cost, but I try to run free Kindle deals as I am allowed. I pray that you are not in a situation where you blame God for something going on in your life. Trials are the faith building steps for us to climb to get closer to God. He is God in the Storm but He also controls the storm, so in my case, He is “God Of The Storm.”
David is doing great today with three precious grandchildren he has given me.
On Ben’s tombstone, I had the entire verse of John 3:16 engraved. This verse got us through many trials, and I claim it today!
