I remember the day we got the news that Adam , my only child at the time, had cancer. I said to my self, “Yesterday. everything was fine. Today..nothing is fine.” I can still feel that anguish inside my soul that was screaming, “Not my baby. Not my baby. ” I had not even heard of that many children having cancer. Most people had not. Even though I had graduated nursing school, it was most uncommon to hear of. And, I was only 25 years old. What did I know about caring for a child that may die. Everything I thought I knew about the life my husband and were planning to live was out the window. I was scared.
Our pediatrician told us that morning at his office that he felt there was a tumor in his belly. Sent us straight to hospital for a 24 hour urine collection to be sure. That was 38 years ago. I suppose they have more sophisticated tests to tell right away by now. But, by the next morning we knew that he had neuroblastoma. I knew this was a highly aggressive cancer. Most children are diagnosed before age 2. Adam was 3 1/2. Later we found out it had an additional type of cell…so he actually had ganglianeuroblastoma.
This pic, above, was made about 2 weeks before his diagnosis. No signs, no symptoms. A round little tummy that we all joked was holding too many cookies. Never thinking it was holding something so monstrous. His tumor was on one of his adrenal glands. Life changed for us in more ways than one…within 2 days he was being operated on…and, for the next 9 years, we were at Children’s hospital as much as we were home.
He was about 5 here and we took a little trip to 6 Flags before we went back for more surgery. He never looked sick. Except for the time he spent in ICU, you could not convince folks he had cancer.
He was a scared, brave little boy and had to endure many, many extremely painful things. Tests that they put kids to sleep for now, they didn’t even consider doing that then. Horrible days..horrible memories.
Q: What is neuroblastoma?
A: Neuroblastoma is a solid tumor cancer of the sympathetic nervous system that originates in the nerve tissue of the neck, chest, abdomen, or pelvis, but most commonly in the adrenal gland.
Q: What is the average age of children diagnosed with neuroblastoma?
A: 22 months.
Q: What is the incidence rate of neuroblastoma?
A: Approximately 8 children per million under the age of 15 are diagnosed with neuroblastoma.
Q: How common is neuroblastoma?
A: Neuroblastoma accounts for 8 to 10 percent of all childhood cancers. It is the most common cancer in infants.
Q: What is the mortality rate of neuroblastoma compared to other pediatric cancers?
A: Neuroblastoma accounts for 15 percent of all childhood cancer deaths.
Q: How many children per year are diagnosed with neuroblastoma?
A: Approximately 650 to 700 children per year are diagnosed with neuroblastoma in the United States.
Q: What is the survival rate of neuroblastoma?
A: Neuroblastoma is a very aggressive form of pediatric cancer and almost 70 percent of patients have advanced stage disease at the time of diagnosis. The survival rate of high-risk children is approximately 40 percent.
We were in the old Children’s hospital in Birmingham. A small 6 story building stuck in a row of other buildings. It was nothing like the wonderful facility they have now. Actually when we were in about 4 years they did some renovations and it was better, but at the beginning…it was an old, dirty looking, scary place to be. Their policy was that when a child went to surgery or ICU or anywhere overnight, you gave up your room. So, when Adam went to surgery, we had to take all our things and store them in our car. and, we were sent to the waiting area. If I had to draw a simulation of hell…it may be this room. Long and skinny with no windows. Light entering only from the door which led off a dingy, dark hallway… bare lightbulbs in the ceiling. There were old chairs like you see in every institution …no comfort, just a straight chair. Approximately 15 down one side, 5 across the back, 15 down the other side, and a table and coffee maker along with a low table stacked with newspaper and magazines from 20 or so years back at the other end. And a telephone. And down the middle of that skinny old room, was another row of 15 chairs…each facing opposite from the one beside it. Many people had suitcases and clothes with them because they did not have a car. So all there possessions they needed in the hospital had to go under their chair. Or beside them in the aisles. Wherever you sat, there were folks staring you in the face. Some who wanted to know everything about you and your family and why you were there, all about your child’s illness and then thought you needed to know all about them. They were lonely and scared just like I was. But, I preferred to try to read. We all had to sign our name on a pad beside the phone. When the phone rang, whoever was closest would answer and call out a name. And, the room would get quiet while you talked. No privacy. No cell phones yet. But, the worst part of this experience was that of the 60 or so people in this room everyday…50 of them were chain smokers! This was before people had laws against such. There was no smoking laws at all. The air in the room was saturated with tobacco smoke. It lingered on the low ceiling and swirled around and under every chair. It filtered through whatever we were wearing and it settled there. It gave me migraines. I wore it everywhere. But I sat there to be close as I could to my baby. There was no where else to go…unless you went to the bigger lobby downstairs, but they would not call you in that lobby, so you were cut off. This is where you ate if someone went and got food. And, even worse…this is where you slept. A lucky few got blankets and pillows sometimes. This was as close to hell as I’ve ever been. I hated to walk back in, if I left to go to the cafeteria or the bathroom. But, that’s what all us parents did as long as our child was not in a regular room. We suffered in our own way while our children were healing.
Adam ended up having 5 surgeries due to his cancer. And, we held our breath anytime anything was out of the ordinary. His pediatricians were very cautious and diligent with his care. Eventually, we got to the place where we only had to go back to Birmingham for testing every 3 months…then every 6…then, every year for 5. And, the day finally came when we were told we didn’t have to come back at all.
We lived a miracle. It was hard. It was terrible . It was the hardest thing I’d ever faced. But, we got our miracle. Adam got to live.
And he got to grow up and meet the girl of his dreams…
And, he got to have a son of his own to raise…
And, he spends his days working as a Paramedic in Dothan and Ozark…rushing to help those in emergency situations. We are so proud of him. He loves the Lord and he and his family are very involved in their church life. We are proud of them all.
I am thankful…so thankful. God reached down and touched Adam and he made it through. But, why? Why us? We were not any more deserving than the friends he saw die in rooms down the hall. We were all in the same boat. Our children sick and dying. And, we parents, learning way more than we ever wanted to know about their diseases. We all prayed the same prayers. “Please heal my boy. Please, God, heal my little girl.” We all would do whatever it took to make them well again. Just as the parents facing this right now in 2016 would do. We would do anything anyone asked if they would just tell us what to do. But, no one ever says ‘this is definitely what will make him well’. Because they don’t now. The doctors and the nurses, the techs, and the scientists…none of them know. They are looking and searching. They are squeezing every dollar that comes in for research as far as it will go. But, there’s so many cancers. And, they all need their own protocol. Advances are being made, some cancers have found their treatment. Great! If your child gets that one. But, there are so many other sick children, and sad families, and sibling who don’t understand. When a child gets cancer, so does the whole family.
Yes, we were blessed to watch our son grow up. But, my heart grieves for every parent I hear of who doesn’t. I wish I had words to explain it. I wish I had words of comfort. I wish I had millions to give to research. I wish I never heard of cancer. I wish no one did.
I can not end this without giving credit to God for his amazing grace. In His wisdom, He chose for Adam to live his life. His ways are not our ways. His thoughts are not our thoughts. In His hands the sick children of the world are held tenderly and thoughtfully. He sees their tomorrows and promises to guard them and protect them. He loves each of them.
“Do not be anxious about anything, but in everything by prayer and supplication, with thanksgiving, let your requests be known to God. And, the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” Phillipians 4:6-7
But not all are healed. And, it breaks my heart, and, if I am to be honest here with you, it makes me thankful all over again. And, then I feel guilty, because I know losing your child to cancer must be the most awful thing to live through. Perhaps, though, if we really believe that God is the Master and Guider of the universe, we can find a place to make sense of it all in our hearts. I’m not sure healing comes down to great faith. We are not all in the same place on our own journey through life. I think it is God’s providence. Frankly, I don’t understand God’s thoughts and His decisions. And, I am not ever going to understand. A very dear, very plain spoken pastor told me one time at the very beginning of Adam’s journey, when I asked him to pray that God would heal Adam , “I will do that. I will ask God to heal Adam. But, you must realize that means ‘healing’ by whatever means He decides. Perhaps it is healing here on this earth and he continues to live with you…but perhaps it is the ultimate healing by going to Heaven to live with Jesus and wait for you to join him there.” And, so I believe God heals all children with cancer…in the way He chooses. Remember, He can see down the road…He knows what they will face tomorrow and next week and next year. We only want our child with us. I thank God that He is the decision maker and I can trust and know in my heart of hearts that He loves my child more than I do and that He will do the best thing. I know that I know that I know this is true. Still, my heart and soul grieves for those whose walk through this terrible journey did not end as ours did and I agree with you in prayer for your child’s healing. God Bless All Children With Cancer!