I have shared with you the story of how our family has dealt with the medical problems of Ian, and the continuing challenges with Alex. Today, I will begin a series of posts on the experiences we went through with my oldest son, Adam.
One bright, sunny Saturday morning, Adam woke with a fever and was ill and fussy. He was almost 3 at the time. I gave him some Tylenol, because I had a busy day planned. At 11:00, I was giving a luncheon for a girl who was getting married. It was to be held at a restaurant nearby. Mom was going to keep Adam while I was there, so I knew if he did not feel well, he would be fine with her.
I got ready to go, and dressed him. He was saying his stomach hurt now, so I gave him a little Donnatal. He had been having quite a bit of stomach trouble lately and we had found out he was low in potassium and wasn’t digesting sugars correctly. The doctors had put him on a fairly strict diet, cutting out all sugars and fruits. He stayed on it very well….except for one incidence. We had gone to the grocery store, and I turned around and I couldn’t find him. I began calling him and searching. Finally I saw his shoes under a table full of fruit. I pulled him out of there, and noticed a banana peel lying on the floor where he had been. “Adam, did you eat that banana?”, I asked. “Yes, Mam, but see, I just HAD to eat it…I just HAD to”, he answered. We had the talk about stealing, and not following his diet, and went on with our shopping. I forgot all about till later in the year.
Anyway, I took him over to Mom’s. He was still whining and saying he did not feel good. Now, I was not a worrier. I was a nurse, and I knew that tummy aches would come and go often. I didn’t see the need to take him in for a Dr. visit for every little thing. So, my plan was to ride this out. However, Mom began to encourage me to call the doctor. I can remember her saying that it was the weekend and if he got worse we could not see a Dr. until Monday. I did call, and surprisingly, they said to come on in right then. That NEVER happened! I almost didn’t go, and planned to send Mom, because of the luncheon. However, I ended up taking him, and didn’t even have to sit in the waiting room. Strange. This was usually a very busy practice, with hordes of snotty-nosed, whining children filling both waiting rooms. We went into the exam room and Dr. Williams came in. Adam always liked him. He checked his throat, and his ears and said yes, he had an ear infection and needed some antibiotics. Then Adam piped up and said, “my tummy hurts.” So the doctor laid him back on the table and began to feel around on his tummy….he then tore off his diaper, and felt some more. I could see he wasn’t liking what he felt. “Tonja,” he said,”Feel right here and tell me what you think.” So, I did, and I was not pleased either. “Please tell me that what I feel is an enlarged spleen,” I said. “That’s what I hope it is”, he said,”But, I’m just not so sure.” Well, friends, that’s when the world slows down and the blood drains out of you, and you are small and defenseless in a big world full of bad things. They are headed toward you and no matter how you try, you know you will not be able to get out of the way. “I want you to go straight to the hospital…right now, I’ll meet you there.” It was 10:15…luncheon was at 11:00. “I can’t”, I said, I’m giving a luncheon in 45 minutes. It will be at least 1:00 before I can get there.” He was not happy about that, but understood…and agreed.
I left quickly, and took him back to Mom’s. I sent her to my house to get pajamas and diapers and such for him to have ready when I got back. And, some how I went and made nice at a luncheon for 15 girls. I stopped by and told Don what was going on, picked up Adam, and headed to the hospital. We checked in and they were ready for us. They immediately started him on a 24 hour urine collection, and sent us off to ultrasound…blood work…x-rays…the works. By the time the doctor came in to see us about 6:30….he knew what it was not…an enlarged spleen. And, he knew what it was….a tumor. Not sure what kind yet, but the urine test would let him know more. A tumor…in my little boy? Surely, something is not right. Surely, there is some mistake. A little boy can not have cancer…it is just not right. There was much company there supporting us, but they all left and went home and it was just Adam and I. He went to sleep and I was just sitting. In came the doctor. He said that he wanted to explain things to me a little better. He did, and when he left I knew that Adam had cancer and probably a very fast growing, deadly form. He said that as soon as we finished the urine test the next day, we would go to Children’s Hospital in Birmingham. And that they would probably operate right away.
He left. And, I sat and let it all sink in. My baby had cancer….and may not live…in spite of all the pain and suffering he was about to be put through. And just that morning, I thought he had a case of the sniffles.
It is this kind of moment that stops your world. Oh, it keeps spinning for everyone else…but not for you. This was the moment my life changed and everything I had ever planned and dreamed of faded away, and everything was concentrated on this one little boy. That was all that mattered…that was all the world was about anymore.
And, he was sleeping peacefully….that innocent, sweet sleep of children…dreaming sweet dreams of playing and running and having fun. Just like little boys should.
This was a long night and I didn’t sleep very much. Early the next morning, our Pastor, Ken Harrison, came by. Pouring out my heart to him, I said how unfair this was and maybe I had done something to cause God to punish my baby. He was a fiery, old-time country preacher, and he jumped up and shook his finger in my face. “Don’t you ever let me hear you say that again”, he said,”that is not the way God does things. If you needed punishing, God would punish you. This is happening and God will be the One to see you through!” I knew his words were true, but I was at a loss to find some sense in this crisis.
The plans were made to send us on to Birmingham. When we finished with the 24 hour urine collection, we were on our way home. I found out later that the type of tumor that Adam had puts out a certain substance and it always show up in a 24=hour collection, and it did in Adam’s case. When we got to our house, it was full of friends. They had a meal for us, and were there to love on us and give us support. We packed and quickly ate, then joined our hands in a circle and had prayer. My sweet, sweet Aunt Katherine who was like a second mother to me…not really an aunt, but so much more than a friend….prayed for us all. People…she and Jesus were real tight. They talked often, and she went boldly to Him and asked for healing. It was as if we all had a taste of the glory of the Lord that day…He filled my den and wrapped us all up in his tender loving arms. A feeling I will never forget. Aunt Katherine lives with Jesus now and I know she is one happy lady to be with her Saviour every day. I miss her, her kind ways, and her quiet wisdom.
Don was having major stomach problems through out this time. Virus…nerves? I think it was a little of both. Remember we were young, He was 27 and I was 25…just younguns’ ourselves. His sister, Beth, drove us to Birmingham. Time was of the essence, so they told us to go quickly, but safely. Don was crashed in the backseat and Beth, Adam and I were in the front. We pulled up at Children’s Hospital about dark. Don was so ill, so I checked us in while Beth took care of Adam. Then they gave us papers and told us to report to the 6th floor. We got in the elevator and I felt like the closing doors were sealing me in a tomb of despair. When the doors opened, we got off and there were 2 little guys pushing IV poles…laughing and playing,,,but no hair. Here comes a mother pulling a child down the hall in a wagon. The child was very ill and not smiling at all…neither was the Mom. Walking down the hall, looking into rooms, were children in various stages of cancer…some crying, some playing…but all without hair. I freaked! I turned around and went back to the elevator with Adam and got inside and pushed the bottom floor button. When we got out I went straight outside. My plan was to get in the car and go home. I guess I thought if I didn’t stay, it wouldn’t happen. Crazy, huh? I think that was when the reality of the situation hit me…and I realized my baby was going to be one of those on that hall. Beth and Don followed me and by the time they arrived, I had pulled it together. Don just put his arm around me and Beth took Adam, and back up we went. And this time, when those doors closed, I had resigned myself to get through the coming weeks. My worst fears were about to come true. My baby and I were getting off this elevator to fight for his life.
After we got settled into a room, Beth and Don left to find a motel nearby. Don was so sick…throwing up and such. I really didn’t want him to be around Adam in case he was contagious. They immediately began working on Adam…more x-rays, blood work, scans, another 24 hour urine collection. The plans were for Mom and Pop and Don’s Mom to come up the next day. The surgery was scheduled for 6:00 AM. They were planning to be there by then. I met with the surgeon and liked him a lot. Adam was still sick from his ear infection and cold, and during the night, he spiked a fever of 103. After this, the DR. came back and said he would put the surgery off til the next day due to his high temp. So, I called Don and told him to just sleep in the next morning and called the family to tell them not to rush to get to the hospital.
As I sat there in that room, I prayed so hard. What was going on? Is this real? Am I dreaming? All I wanted to do was run…fast and far. I remember asking God to take control of this situation. I had my Bible and kind of clung to it like a life preserver. I would open it and read, and pray, and read…and wait. I asked God to tell me what to do…to let me know He was there…to save us from this nightmare. I wanted to hear His booming voice saying it was all taken care of. But, I didn’t hear that. I didn’t hear anything. I wondered what was to come…I wondered if God even heard what I was saying. I was not nearly as strong in my faith at that time as I am now, and this was a sure test of that faith. Finally, I dropped off to sleep, and at about 6:00, the surgeon came in. “Mrs. Owens”, he said, “I have a feeling that I need to operate on your boy…now! I never operate on a child with fever like this, but my gut tells me to get in there now. Will you give your permission.” Well, what a way to wake up! “I have spent the greater part of the night praying”, I said,”so if you feel that strongly, then I feel like the Lord is leading you.” So, I gave permission, and he picked up my little boy in his arms and off they went…down the hall, onto the elevator…and away. Just like that. I had no time to call Don, or family, or God. I had to make a decision right then and there and pray it was the right one. What a feeling it was to be there and know my baby was in a fight for his life. They had told us the night before that his type of cancer…ganglioneuroblastoma…was usually discovered during the first year of life…the later it was discovered, the greater the likelihood that it had spread. They said we would be lucky to have him for a year. A lifetime can not be crammed into a year.
I quickly called Don and Beth and the parents, and they spread the word. They all began to make their way to the hospital. I had to give up our room and go to the intensive care waiting room to wait. All our belongings packed up, and moved with me, into a little room that came to be a “hell on earth” to me. This was in 1978, so the smoking rules were non existent. This dungeon like room was dark and had chairs all along the outer walls and a row down the middle. There was very little room to walk. Some of the people had been staying there for weeks, so they had little homesteads set up. People asleep on the floor, in chairs…and more than half of them smoking. No windows in this room….just a coffee machine, 2 televisions, about 30 people, 1 pay telephone, and enough cigarettes to circle the globe. I have never been so miserable in all my life. And, there was no other place to wait unless you sat on the floor in the hall. When they would go get food the odors of the food would float on the smoke and stay there for hours. Hell-on- earth. But, this was the only place we could stay for the next 4 days. So we did. These people were in the same position I was. They were hurting, too. Their children were fighting for life just like mine. Being so young myself, there was much I didn’t know about human nature. Things like desperately ill children can bring out the worst in people and families…or it can cause you to cling together and draw strength from each other. It causes some to lose every bit of dignity they have. Some lose all restraint, and don’t care what they say or do…or who is nearby. What I observed those days sitting in that waiting room taught me much about people…a real lesson in life.
Don got to the hospital while Adam was still in surgery, so he was there when the dr. came out to tell us the news. He said, “When I opened Adam up, I could see the tumor. It was on the adrenal gland. It was visibly bulging and could have burst at any moment. I think we got it out still encapsulated. But, if we had waited another hour or two, it would have been too late. He could have died from the tumor bursting, and if not it would have sent the cancer all over his body. We did the right thing.” Friends, I hugged Don, I hugged the Dr., and I sent a hug right up to God! It was so evident to me that I had just seen God at work. This was the first of many, many lessons I would learn about letting God be God and following His will. The first of many.
Adam went straight to ICU, and when we went to see him, he looked so pitiful…my heart was torn in two. He had no clothes on and was crying for someone to put his diaper on. He was not completely potty trained and still wore a diaper at night. He had 2 drains coming from his abdomen, a tube down his nose and IV in both arms. Now, he was and had always been a thumb sucker. He arms were restrained and he was unable to get to his thumb. All he would say was ,”Put on my diaper or give me my thumb.” I got the nurse to give me a diaper and I laid it open on top of his bottom. They could not put it on him because of the incision. But that satisfied him. Then they let me hold him and while I held him, he could suck his thumb. What a comfort for him. When they found out that I was a nurse, and was not going to freak out , they moved him into a little side room sort of by itself, so that I could stay with him more. When the Dr. came in, a few hours later, Adam said, “please give me my thumb.” The Dr. looked to me and I asked Adam if he would promise not to pull at the tube in his nose. I told him if he did we would have to tie his hands back down. “I pwomise, Mommy”, he said. We untied his hands, and he never once tried to pull it out. Boy that was the best medicine in the world for him at that moment. He was able to sleep and rested quieter for the rest of the time. We spent the next 4 days there…parents, family, friends…pulling together for the life and well being of this little boy. Watching God work,,,feeling the strength only He possesses…knowing the peace that only He can give.
And, this was the beginning of our quest to help Adam. And, a long term relationship with Children’s Hospital. We began meeting with a series of Doctors…pediatricians, oncologists, surgeons, counselors, hematologists. I am so blessed that I had some medical knowledge…so we were not flying completely blind. And, I acquired much more knowledge than I ever wanted.
The oncologists came into Adam’s care as soon as he was out of ICU. And, this was a whole world I knew nothing about. They were following protocol from the Children’s Hospital of Philadelphia. Their research at that time indicated that removing the tumor was the only course of action in this type of cancer. Thus we began many long years of testing and waiting to see if the cancer returned. Many more 24=hour urine tests…it was not unusual to see a big carton of acid and urine in our refrigerator!
Blood work and x-rays of course…but the most horrendous and terrifying and hated was the bone marrow aspiration. The first one they did on him numbed me to the core. But for Adam, it was pure torture. I think they give some sedation now, but at the time…nothing. The first one they did, they laid him on his stomach, and proceeded to clean off a space at the base of his spine. Then they brought out the needle. Oh. My. Sweet. Lord. It was the biggest needle I had ever seen…big enough for the top to screw off and remove the core…leaving it hollow in the middle. Then the Dr. pressed the needle to his spine and leaned into it so as to push it into the center of his spine where the marrow was. This is nothing like a spinal tap where they go into the spaces between the bones…this was directly into the center of the bone. This was bad enough, but then they aspirated the marrow…and my baby screamed from a place that no one should ever have to go. And then it was over. He was clawing to get to me and I was so weak, I though I would pass out. The only bone marrow aspirations I had ever seen were done in surgery on a sedated patient. Never did I see anything like this in nursing school. I am shaking just typing this now…that horror will stay with me for ever. Don, being the good dad , wanted to be there for Adam and take some of the pressure off of me, said he would go with him for one of them. I told him no, that he really just should not, but he insisted. They picked him up off the floor after it was over and he never offered again. I would never have let any one else go, it was too gruesome. I later learned after doing some research on this procedure, that because there is such a vacuum in our bodies, when the marrow is aspirated through the needle, it feels as if everything inside of you is being sucked out through that tiny opening. Horrendous.
BUT…it brought GOOD NEWS! There was no evidence of cancer cells in the marrow! This was wonderful. We stayed in the hospital for about 2 weeks. I held up well, and was able to do everything that I needed to do for Adam. At this time in my life, I was suffering excruciating cluster migraine headaches that would sometimes last for 2-3 days. But, I did not have one the whole time we were there. We knew we were going home the next day, and that morning, I woke up with a severe migraine. I was in so much pain, I could not even walk…or even see straight. Don came to take us home, and I put Adam in the front seat with him. The Dr. gave me something to take, and I lay down in the backseat, and drifted in and out for the 4 hour trip home. I was not much better when I got home, and spent the next 2 days unable to get up. But, isn’t it amazing that I never had one while I was in the hospital? This is when family and friends took over and helped get us through these difficult days.
We began a routine of visits back to Children’s. At first weekly, then every 2 weeks, then monthly for a year, then every 2 months for another year. The next year found us going every 3 months, then every 6 months. And at over half of them they had to do another bone marrow aspiration. Can you imagine the horror of a little boy having to ride 4 hour in a car, knowing when he got there he was going to be tortured with this procedure? It mattered not how we tried to spin it, or help him forget it, or make promises for afterward. For the day before and the trip up, that was the only thing he focused on. We tried to not even let him know we were going until it was time to go, but he always could tell. My saint of a Mom would read, and sing, and hold, and tell stories, and tickle, and blow bubbles, and stand on her head….anything to keep him occupied as I drove. I could not have done it without her. God knew this and made it possible for her to be able to go with me and help me through this. She suffered as I suffered. And together, we tried to get Adam through this ordeal.
At the time Children’s was not the big, nice facility it is now. It was a small, old building, with old equipment, that never looked clean. I’m sure it was, but it didn’t feel clean, you know? I hated to go into the clinics where all the children were. Most of the parents were poor, and on welfare, and their children were always very dirty looking, as well as so sickly. The parents seemed so weary of it all…as if they could hardly go another step. Usually they had another 4 or 5 children in addition to the one with cancer. The waiting rooms were such depressing places. All the toys were broken, and the books were colored in or had the pages torn out as if no one had tried to control the children at all. It burdened my heart so. My Missions group at my church gathered books and toys several times and I would just take them with us and leave them there when we left. I still remember one little girl grabbing a book and running to her mother and saying,”Look, Mama, it’s a new one and it’s got all it’s words still inside!”. That little girl died about a year later. Now, Children’s is a beautiful facility, with all the latest equipment to treat little ones. We used to be bused over to UAB of St Vincents. I am so happy for the children that came after us.
One of the changes I tried to make during my years staying there, was to increase their awareness of the out of town patient and family. When I would stay for weeks at a time, I had no where to take a bath, we could not use the patients bath, no where to keep my clothes, no where to wash our clothes, no way to leave Adam and go to the store for supplies, etc. I met with hospital officials several times, and voiced my dissatisfaction from the point of view of a parent from out of town. I am happy to say that now there are rooms just for parent to shower, washers and dryers just for parents, sitters to stay if you need to leave, and lockers to store things you need to keep with you. Much improvement.
Adam was closely watched for 10 years. He had some precancerous cells come up on the kidney, they were removed, and never came back. He then had some to come up on the back of his neck…they were removed, never to return. All the surgery did much damage to his pancreas and he has had to have major surgery on it twice. But, he is well, he is happy, he is alive, he is married, he is a photographer, he is a Sunday school teacher, he is a Christian, he LOVES THE LORD, he is my boy…and I love him!
Adam went back to school and is now a paramedic…working on his RN degree. He is the father to our first grandchild, Levi Hampton Owens, born 3/29/11. Adam continues to grow and in his faith and is active in his church. God is so good and we thank him daily for his blessings!