And that’s the truth!
I have not been on FB much in the past few days…busy week! Today, however, I looked to see what friends were up to on FB, and found some things of interest on the pages I subscribe to.
This brings back all kinds of memories for this Mom. I have a son who survived cancer. He is a wonderful son…handsome and talented…with a beautiful wife, Suzanne and son, Levi. He is 39 years old and a paramedic and professional photographer.
Time was, 36 years ago, that we didn’t think we would see him live to turn 4 or 5. His cancer was a ganglioneuroblastoma.
******** What is neuroblastoma?
Neuroblastomas are cancers that start in early nerve cells (called neuroblasts) of the sympathetic nervous system, so they can be found anywhere along this system. A little more than 1 out of 3 neuroblastomas start in the adrenal glands. This type of cancer occurs most often in infants and young children, under the age of 2 years. It is rarely found in children older than 10 years. It has an incidence of about 650 cases in the US per year.
There is a wide range in how neuroblastomas behave. Some grow and spread quickly, while others grow slowly. Sometimes, in very young children, the cancer cells die for no reason and the tumor goes away on its own. ).
Ganglioneuroblastoma is a tumor that has both malignant and benign parts. It contains neuroblasts (immature nerve cells) that can grow and spread abnormally, similar to neuroblastoma, as well as areas of more mature tissue that are similar to ganglioneuroma.
Signs and Symptoms
The effects of neuroblastoma can vary widely depending on where the disease first started and how much it has spread to other parts of the body. The first symptoms are often vague and may include irritability, fatigue, loss of appetite, and fever. But because these early warning signs can develop gradually and mimic those of other common childhood illnesses, neuroblastoma can be difficult to diagnose.
In young children, neuroblastoma often is discovered when a parent or doctor feels an unusual lump or mass somewhere in the child’s body — most often in the abdomen, though tumors also can appear in the neck, chest, and elsewhere.
The most common signs of neuroblastoma are caused by the tumor pressing on nearby tissues as it grows or by the cancer spreading to other areas. These signs vary depending on how much the cancer has grown and where it has spread.
For example, a child may have:
***a swollen stomach, abdominal pain, and decreased appetite (if the tumor is in the abdomen)
***bone pain or soreness, black eyes, bruises, and pale skin (if the cancer has spread to the bones)
***weakness, numbness, inability to move a body part, or difficulty walking (if the cancer presses on the spinal cord)
***drooping eyelid, unequal pupils, sweating, and red skin, which are signs of nerve damage in the neck known as Horner’s syndrome (if the tumor is in the neck)
***difficulty breathing (if the cancer is in the chest) *************
He was diagnosed at age 3, which is usually quite late as far as survival goes. But, for some reason, the tumor, on his adrenal gland they say he was born with, did not start growing until shortly before we found it. At removal, it was the size of a grapefruit!
One Saturday morning, I was giving a graduation luncheon for a dear friend of the family. Because it was at a nearby motel banquet hall, I dropped little Adam off to stay with my mother. I went a little early to get him settled. He had been running a few and was coughing, red eyes, the whole bit. I did not plan on taking him to the doctor. Being a nurse myself, I usually just found the right meds or got the doctor to call something in. But, my mother…God bless her soul….my mother said, “Tonja, it’s the weekend, what if he gets any worse? Maybe you should run him by and let them get him started on some meds.” Something rang true about this, and so I did. The nurse said for us to come right on over and he could see him quickly.
We did. The doctor looked in his throat and in his nose and listened to his chest. Yes, upper respiratory infection. but before he handed him back to me, he did a once over on his body and mashed all around on his body. Then he looked at me and said, “Come here and feel this, Tonja.” And, I did. I said, “I sure hope that’s his spleen.” The doctor looked at me and said, “So do I…but I don’t think it is. I want you to go straight to the hospital…right now…and check in. I will see you there in about an hour.” “I said, I am giving a luncheon in an hour for 20 people. I can’t cancel now. I can be there early afternoon.” He said get there as soon as I could. *****LIFE LESSON: Always listen to your Mother! She knows!*****
We went back to my mother’s house and she took him to my house and got his clothes and mine. I did the luncheon. Mom and I left for the hospital and I stopped by Don’s work to tell him where I was going. It was in that moment that I told him that the realization struck me that my life had totally turned itself around and would never be the same.
We were admitted and tests run. By late evening, we knew that it was most likely cancer. By early afternoon on Sunday, it was positive. We were dismissed from the hospital and went home to pack…final destination Birmingham Children’s Hospital. Don was sick from a bad stomach virus, so his sister drove the us to Birmingham. She, Adam and I in the front…Don laying down in the back. We dropped him at a motel and went to the hospital down the street.
This is the part that still gives me terrors when I remember. We walked in and were admitted and they told us to go to the 6th floor and someone would meet us. We rode up the elevator and got off. All I could see were bald headed children. Some walking with IV poles, some being pulled in wagons, some in wheelchairs, and some carried by parents. I turned around, got back on the elevator. I took it to the first floor and walked out of the hospital toward the car. There was no way I was letting my child go in there. No way I was going to put him through this. No, not going to do it. I sat in the car and just got myself together. Talked to God…He talked to me. Beth was playing with Adam in the parking lot.
As hard as the unthinkable is to deal with…and as much as you want it to not be so…there always comes that realization. This is real. This is happening. Happening now…so deal. And, that’s what I did. I took a deep breath and walked back in…up the elevator and through the doors. This time a nurse was there to greet us. She said, “I have been looking for y’all. I was afraid you’d gotten lost.” “We did,”I said. “But we managed to find our way.”
And, that’s what we did for the next 8 or nine years…Children’s Hospital of Alabama became a second home. There were also hospitals in Atlanta. Surgery upon surgery…treatment upon treatment…pain and loneliness and fear. And, always God. And always family and friends. And, Adam has been cancer free for 30 years now. You can play tic-tac-toe on his belly from the scars of all the surgery…small price to pay. From an original diagnosis of perhaps a year to live, God has granted us grace and mercy and strength and growth and peace. We did not deserve it anymore that another child riding in that hall. And, yes the time came when he rode his tricycle down the hall with the other children. No child deserves cancer. No child should ever have to live through this demon attacking their life when they are still innocent children.
But, God kept every promise. And, while we knew that a gift of healing could mean God taking him to Heaven…we boldly prayed for God to take control of Adam’s life and hold him in His arms and love him with all the love He had. And, that’s just what He did. Thanks go to the doctors, the nurses, the family, the friends, even the strangers who we never knew. But, God!
As I continued to scroll through FB, I was surprised to see this picture …
Surprised, because this is what I dealt with with my youngest son. Ian was born with a unilateral cleft lip and a bilateral cleft palate. This means that only one side of the lip was affected, but both sides of the palate were cleft.
********** Orofacial clefts are birth defects in which there is an opening in the lip and/or palate (roof of the mouth) that is caused by incomplete development during early fetal formation.
Cleft lip and cleft palate occur in about 1 or 2 of every 1,000 babies born in the United States each year, making it one of the most common major birth defects. Clefts occur more often in children of Asian, Latino, or Native American descent.
The good news is that both cleft lip and cleft palate are treatable. Most kids born with these can have surgery to repair these defects within the first 12-18 months of life.
The complex needs of a child with cleft lip and cleft palate are best met by an interdisciplinary team of professionals from various specialities who work together. This is a standard of care that begins soon after the child’s birth and continues to adulthood.
The members of the cleft lip and palate treatment team include:
ear, nose, and throat physician (otolaryngologist)
team coordinator **********
I had a natural childbirth, so I was fully aware when Ian was born. The moment he was born, there was a hush over the delivery room. I asked the doctor to show me the baby. He then held him up for me to see. I was prepared to see another sweet baby boy…but not prepared for what I was faced with. I went into shock and don’t remember much of the next few minutes. But, that passed quickly enough and Don and I had to quickly come to terms with how to care for this baby boy. I knew nothing about clefts. I had not even seen an unrepaired one before, even through all of nursing school. But, I was soon to find out way more than I ever desired to know. As the info says above, the path to correction includes many different areas. And, depending on the severity, the path can be a long, drawn out road. Ian’s first surgery was when he was 3 months old, to repair his lip. At 14 months his palate was repaired.
He has had revisions, repairs to fistulas, bone grafts to the gums, major orthodontics, and the list goes on and on. He has had 12 operations with the last one being just 2 years ago.
We were blessed to be led to a wonderful program at the University of NC in Chapel Hill. They have performed all but 2 of his surgeries…and led Ian to another excellent doctor in Birmingham for his last 2 procedures. Will there be more? At this point, we are not sure. As Ian is 31 now, these decisions are in his hands.
As you know, children can be cruel…sometimes without meaning to. Don and I decided that we would be proactive about this so that Ian would be prepared when the time came that someone would mention his scar. We explained to him that his face did not finish growing before he was born, and so the doctor just had to sew it up…just like when you get a rip in your pants. Because we felt that his speech would be the most noticeable thing to draw attention to the problem, he started in speech therapy at age 18 months…right when he was learning how to form words. He had to learn how to talk without sounding nasal. And, we and his speech therapist were very firm with him on this. He had to learn the proper way to speak. And, he did beautifully! He has no hint…and never has had of nasal speech that is sometimes associated with clefts.
We prayed from the very first days that God would bless Ian with a personality that would outshine his physical appearance, and He answered us by giving him a bold, fun loving spirit. Never one to meet a stranger, he talked to everyone. He had that fighting spirit from day one. But, the day did come when some of his friends in kindergarten started asking him why he had that scar on his lip…why was it there? Ian handled it beautifully. He went to his teacher and asked her if he could tell his whole class something. She let him…and she told me later that this is what he said. “I have a scar on my lip because my face didn’t finish growing, so the doctor sewed it up. It’s just a little scar. So don’t ask me again!” And, that was that. Nothing else was ever said that we know of. His friends grew up knowing why and it has never made any difference!
Ian is VP of a graphic design and advertising agency in Birmingham. He is married and has a beautiful stepson, Jackson. To this Mother, he is as handsome as he can be…and his wife, Tina, thinks so too!
As hard as it was raising three boys…even without major medical issues…great lessons were learned. I think that every crisis we encounter is in our lives to teach us a lesson. The greatest tragedy is failing to learn. Because the boys and their brothers had major medical issues…it taught them to be kind and loving to those who looked or acted differently. We learned how to pray…specifically for what we needed. I would make a poster and put it on our refrigerator with 2 columns…WHAT WE NEED and WHAT GOD DID. As needs were met, we filled it in and it was a tangible reminder that God will do what He says He will do! He doesn’t promise to give us what we WANT…just what we NEED. When you have the evidence staring you in the face everyday, it’s hard not to know the truth of His words! We learned to search the Bible for verses that would speak to us. When Adam was facing one of his operations, we found the verse that says He will always be with us wherever we go. This concerned him and he said I just wish He would pat me on the shoulder so I would know that He’s really there. I boldly told him that God could do that. “Just wait,” I told him,” you will feel Him. He will pat you on the shoulder.” So, his last words to me as he went into surgery were, “Are you sure He is going to be there?” “I promise!” I said. And, I did some powerful praying asking God to let that little 6 year old boy feel His hand. When Adam was brought back to the room, still a little groggy, the very first words out of his mouth were, “Mama, He was there! He patted me the whole time!” How can you not believe in the presence of God when He answers prayers like this. Such a tiny thing…but my God is aware of all His children and everyone of their needs!
It became one of our favorite teaching tools through out their time at home to ask, “What lesson did you learn?” no matter if it was a problem with friends or school or illness.
Lest I give you the wrong impression…there were also tears and questions and anger and frustration. There were times we cried out that we were angry and that God was not fair! There were times I wanted to run away and hide from it all. I freely told God just how I felt. “Why did you do this to us?” And, you know…God listened and He heard me and He understood. He knew my feelings before I even told Him. He told me to unload my burdens to Him…and I did. And still do. He listens. He holds me. He comforts me. And, He gives me grace and mercy and peace.
And, I must mention in closing that there is also another special day that is near to our hearts…
National Rare Diseases Day!
And this would include my third son, Alex. He was diagnosed with Cerebellar Atrophy when he was in the eighth grade and his life was never the same. There is very little research about the disease. Most of what is known is how it affects people in the long run. It is extremely rare for it to strike a young person, usually being diagnosed in middle age. There is no treatment…only managing symptoms. Alex is in severe pain daily, has very little balance, sees double all the time and has nystagmus…which is the eye jumping continuously. It is not a disease that affects the mind in any way…only physical traits. The National Rare Disease Day is held annually on February 28, which happens to be Don’s birthday.
Just a little info:
***a disease is considered RARE if it affects less than 200,000 at any given time
***there are over 7000 Rare Diseases identified in America
***there are approximately 30 million people in the US who suffer from a rare disease…that is 1 in 10 Americans
***50% of these are children
***50% of the diseases do not have any organization for information or support for research
One Sunday night Don was asked to give his testimony in our church. He stood and gave praise to God for his healing of Adam. He told how thankful we were that God was meeting all our needs with Ian. And, he said how thankful we were that our middle son was healthy and strong. Less than 2 years later, Alex was diagnosed with this horrible disease.
We don’t understand…and that is OK. It is the path that we were asked to walk. These are the 3 boys…now men, whom God chose to become members of our family. These are the boys He wanted in our family of grandparents and aunts and uncles. These are the boys He wanted raised in the knowledge of the Lord at Southside Baptist Church, by staff and church family and friends. And, so our lives have always been a little different, but so many blessings I could never count them all. Oh, the wonderful things we know now that we may never have learned any other way.
My heart breaks for those afflicted with Childhood Cancer. I cringe whenever it is mentioned. I am so sad when I see a child going through the countless stages of treatment for cleft lip and palate. I pray that they will have strength and courage for both of these. And, my heart breaks whenever I hear someone say that they can not find much information on what is wrong with a loved one. Or they cannot find a doctor to help. For we have been there. We have taken Alex all over the US searching for doctors with some…any…information to help us. But, sadly, it’s just not there.
I urge you to pray for doctors and nurses who deal in illness and disease every day. I urge you to pray that more research is done on the diseases that sometimes do not even have a name…just a number. I ask that you teach your children that even though someone may look a little different, or talk a little different, or have a bald head, or can’t walk without falling…inside they have feelings just the same as they.
And, I should like to encourage you that if you find yourself in any of these situations or other medical crisis,,,the strength you need will be there. Just ask. There will be hard days, for sure. But look! You will be surprised to see how many people God will use to meet your needs. Keep a record. It will amaze you what God will do. I can tell you this for sure….in the midst of sorrow…there will come joy. There will come joy!
May God bless all those that suffer today. And, may I never take for granted the blessings we have. I pray that He keeps my heart tender to always be concerned about others and be willing to share and help in ways He puts in front of me. Say an extra prayer today for those children dealing with hurts and pain.
I hope maybe this post has enlightened you a little. Sorry for the length, but it is what it is. Isaiah 46:4
I hardly know what to say, Tonja. I have read other things you've written about the boys and their medical history, but it touches my heart deeply all over again. I love you and your precious family SO MUCH!!!! That family picture is wonderful. Your testimony and your faith is such a tremendous inspiration to me. Thank you, thank you, thank you!!
I have no words today, My Dear Friend.
All love and admiration to you and all your sweet family—Heroes Every One.