One reason I started this blog was in hopes of being able to dig inside of myself and try to start fighting the grief that I have dealt with since 1989. So, I shall tell you a story that saddens me but also helps to heal my heartache.
It was summer time and the year was 1986….seems like only yesterday in my head. I was only 12 years old at the time and as a kid I really didn’t think much about how life worked. My biggest worries were what I was wearing to school the next day or who was coming home with me on the weekend. However this one hot summer day my life forever changed. I was outside on the front porch swinging on the posts of the house loving the feel of the warm sun shining down on my face. My bare feet were hot to touch from the heat off of the concrete porch. The peaceful sound of birds chirping was interrupted my the sound of sirens blaring on the next street over. My heart for some reason sank and I had the worst feeling ever fall over me. I knew in that moment something was terribly wrong. As the sirens faded and then a few minutes later blared again I ran inside to ask my mom if she heard anything on the police scanner. She told me the ambulance was called to Dollar General warehouse because someone had passed out. Mom told me she had a sick feeling in her stomach because my brother worked there and moms always have that instinct.
About 30 minutes later the telephone rang and as my mom stood there looking at me I could see the panic cross her face. She hung up and told me to get my shoes on and go outside to get my dad. In a matter of minutes we were pulling into the local hospital with me not having a clue as to what was fixing to happen. All I knew was that my brother had passed out at work and hit his head pretty hard on the concrete floor. As we waited for the doctor I could feel the worry covering the room. At that point other family members had filed in and was waiting with us. I don’t know how much time passed but the doctor finally came and got us and we stood outside my brother’s hospital room. The doctor told my mom and day he had done some tests and ran labwork on brother. The news wasn’t good. He told us that my brother had acute lymphocytic leukemia which was mainly a childhood cancer. At that time not much was known about ALL except that the prognosis was not a good one. We were told that day that we had approximately 3 weeks to 3 months to say goodbye to my brother. I can remember the tears falling down my parent’s faces and the numbness that fell across my body.
The doctor who had delivered and taken care of my brother his entire life broke down and began to cry himself. He told my parents that he felt they should be in there to help with giving my brother the news. My mom and dad asked some of the family to take me home so that they could spend some time with my brother and give him the devastating news. The next few days were nothing more than a sad blur. No one smiled, everyone cried, there was silence in my house that I had never experienced before. My brother was only 18 years old….he would be turning 19 in a month. To me my brother was still a kid and this didn’t happen to kids.
We were sent to Nashville, Tennessee to St. Thomas Hospital which became our home for the next three years. While we sat in a confined white hospital room waiting to meet an oncology doctor no one talked. Our eyes were swollen from the tears that had began and never stopped. My brother sat there on the bed staring out the window. Suddenly he turned to my parents and he smiled. He said everyone needs to stop this moping because it is what it is. I am only human and I can’t change the fact I have cancer but I can change the way I handle this battle in my life. From that moment until the day we buried him I never saw him complain or ask why again.
The doctor walked in with a slight grimace on his face. He was dressed in black dress pants, white shirt, and a black tie. He had a beard that resembled Santa and round glasses upon the bridge of his nose. He sat down in the chair next to my brother and they began a relationship right then that would blossom into one of trust, compassion, and a brotherly love. We were given the details of ALL and the choices for treatment that we could pursue. My brother decided to go ahead with the chemotherapy treatments and the oral medications. My brother began a journey that would be very sad, painful, and in the end heartbreaking.
He was so very sick for the first three months and spent most of that time in the hospital. The chemotherapy made him vomit non-stop for days at a time. His body would swell up from the steroids he had to take. He was poked with needles and ran through test after test. He would have a good day and then a week of bad days. My parents and I would go donate platelets every few days because his would drop so low. Even though I would see tears roll down his face when no one was in the room but us he would never complain. That year we spent Thanksgiving in the hospital. He had friends, family, and church members that all got together and cooked us a huge dinner. They all loaded up in vehicles and took the nearly two hour trip to spend that day with us. A week later we were blessed with the news that my brother was in remission.
Over the next three years he went in and out of remission so many times I can’t count. He didn’t let it get him down and he lived every day to the fullest. He continued to play the drums for the band he was in, we went on vacations, and he even got married. He reached out to so many people and touched their lives with his story. The days spent in the hospital were made brighter by his charades. He made homemade hand puppets, had a train set up in his room, and used remote control trucks to chase the nurses. He would go to different rooms and talk to the other patients about their journey. He was a lively spirit and he never met a stranger. I will always remember the day Dr. Cooper walked into the room wearing khaki pants, a bright pink shirt, and a purple & pink striped shirt. I was always used to the conservative black pants and white shirt. I asked him who got into his closet and changed out his clothes. He began to chuckle and he said this was a gift from your brother over there. My brother had told him he needed some color in his life….that he was just depressing his patients even more with his gloomy talk and gloomy clothes. From that day on I never saw anything on Dr. Cooper but bright cheery colors…..and a smile on his face.
In December 1988 my brother became very ill. He was out of remission again. We were spending more time in the hospital than out. We spent Christmas there that year and to this day that was the most wonderful and meaningful Christmas I have ever had. We made ornaments to go own our cardboard tree and we made each other presents out of construction paper. Once again our family and friends brought us a lovely Christmas dinner and we filled the corridors down there with Christmas carols and a feeling of love so strong. Over the next few weeks I saw my brother become a shell of the person he was before. The chemo wasn’t working anymore and he had been through so much. I had watched him endure Hickman Catheters in his chest and shunts put into his brain. I watched them stick him over and over and not be able to find a good vein. I sat and held his head in my hand as he vomited time and time again. I would go down to the church chapel and pray for God to take me instead of him. He was the outgoing, loving, and giving person that I could never be. I sat there on that pew and cried until I couldn’t breathe. I began to think back over the past three years that we had spent together. I remembered the days he decided to go sky diving just because “he might not be here tomorrow”, the trips we took to the Smokey Mountains on a minutes notice, the cookouts the family had for him, the waterfights in the back yard, the nights he would tuck me in and give me a kiss on the cheek, the talks we had when it was just me and him, so many memories flooded my brain. I knew in that moment that he wasn’t going to be around much longer but that I had to except it. The next week which was the week of Easter he began to call everyone into his room one at a time to tell them that he was ready to let go. He told us that he was tired and just wanted to be at peace. He fell into a coma that night. For the next few days he laid there so peacefully.
On Thursday Dr. Cooper came in that morning and told us he didn’t think my brother would make it through the night. He told us all to talk to him, hold his hands, and just be there for him even though he was in a coma he would still know….still feel us. We all sat there exhausted from the days of no sleep and we talked about our journey together. We reminisced earlier days before he became ill. I decided to take a walk about 11:30 that night. I hadn’t been gone thirty minutes when a family member found me and told me I needed to get back to the room immediately. As I walked in I looked at the clock on the wall and it was 12:15 am. He had made it through the night and once again proved them wrong. I walked over to my chair beside his bed, took his hand in mine, and leaned my head over on his chest. I felt him breathe in and out…….then nothing. I kept my head there waiting for the next breath but it never came. He was gone. I began to sob so loudly and so hard that I couldn’t breathe. I looked up at his face and there was the most beautiful smile you have ever seen. I wiped my tears and I kissed him on the cheek just as he did me every night when he tucked me into bed. It would be the last night I spent with him.
Doctor Cooper came in to pronounce his death and to be with us. He sat on the side of the bed and thanked my brother for being such an amazing person. He let the tears flow as we all did. He told us that we would all stay there with my brother until the coroner came to get him because he didn’t want him to have to go to the morgue. After they picked him up to return to the little town he was born in, raised in, and would be put to rest in we had to make that two hour drive home. It was the longest two hours of my life knowing that would be the last journey I took with my brother.
My sweet brother passed away on Good Friday and we laid him to rest on Easter. It was a rainy and cold day. I can still see the events of that day in my head. We had his funeral at our church because the funeral home didn’t have a room big enough to hold everyone that came. It was a massive turn out…..such a way to pay respect to my brother. All the lives he touched in those three years was obvious that day. Friends, family, nurses, doctors…..so many filled the church that day to say goodbye to a 23 year old man who had lived such a full life in such a short amount of time. I will never understand why things happen. I don’t even question it anymore because I know there is no answer. I am just so blessed that I was given 15 years to spend with such a loving, intelligent, giving brother. He taught me so much about life and love. The good points that I do have…..I only have them because of him.
Yesterday was the anniversary of his death. It was also the day I learned that my aunt has been diagnosed with stage four ovarian cancer. I simply hate that word. It is an evil that affects us all in some way. With A.L.L. in general, about 80% to 90% of adults will have complete remissions after treatment. That means leukemia cells can no longer be seen in their bone marrow. But in about half of these patients the cancer will come back (relapse), so the overall cure rate is around 30% to 40%. Again, these rates vary depending on the subtype of acute lymphocytic leukemia (ALL) and other prognostic factors. Someday I hope to see this change….I want to see a day when we don’t have to worry about statistics and survival rates.
I hope this shows you a little bit about the life of my brother and the grief I still deal with from losing him. I don’t mean to be a sad sack but I feel by talking about him I keep his memory alive.
In memory of Christopher Aaron Ray 9/18/65 to 3/25/1989