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!
There was just the teeniest touch of fall in the air…still hot, but with a smell of the cooler temps to come. Don and I picked Levi up from school and went out to eat. Then, per Levi’s direction, we headed to Landmark Park. He loves this place. Don and I have not been in quite a while…but Suzanne and Adam take Levi there quite often.
We visited all the little buildings and then headed to the fabulous playground. Just an ordinary day…nothing to cause it to stand out any more than any other day. But, it was a beautiful day…a God-given respite in the middle of the stress of everyday life. Actually, it is well worth remembering…so enjoy some pics I managed to snap!
Are you as happy as I am when I have an ordinary day. So many of our days have a moment when something startles us…we have an accident… we get bad news…we have to do something we really are not comfortable with…someone is unkind to us…someone doesn’t behave in a way that we agree with. And, from that point on, the day goes down hill. Nothing can rescue it and turn it back into an ordinary day. It is marred by circumstances.
But, all along there are also plain, ordinary days. The sun still shines, or the rain pours…but it doesn’t matter. Nothing is ruffling our feathers. No bad news…no accidents, we can do whatever makes us happy, everyone one we meet either ignores us or is kind…but no one gets in our way or causes us one bit of stress. These are the days that generally come and go and we think them unremarkable.
But, oh! what joy there is hidden inside those days. There is time…there is fun…there is play…there are smiles and there is laughter. There is room to explore and time to stop and give thanks for the days when ‘nothing happens’. And, when you lay your head down on your pillow at night, you think to yourself, “What a great day!”
And, those are the days you treasure and keep in a safe place. It was one of those days.
We have been slowly adding some touches of fall to our house. Levi loves to help. Especially if painting or gluing is involved! Here is a package of burlap leaves I picked up at HL. They have a wire attached for hanging. $4.99 a pkg…16 in each. 40% off. I set Levi up with his watercolors and showed him pictures of how fall colors seem to blend right into one another.
These are the colorful leaves he did with his watercolors…
And here are some I did with acrylic paints…
He painted with abandon! Be sure to put something under the leaves if you do this…paint seeps right through. You can also use regular acrylic craft paint for heavier coverage. WARNING…acrylic craft paint is NOT washable, Will NOT wash out of clothes! We used kids washable watercolor palette.
Once dry, he hung them his fall tree. Then …on his own, he decided to paint pumpkins and acorns and cut them out. I imagine we will add quite a few more things before the season ends!
I set my big table with dishes and glasses from Pier One. These are all melamine…but have a rustic weathered look to them. The runner is an antique piece given to me by Shirl and Tina. It is all hand wrought and such a treasure of mine. Th napkins came in a pkg. of 12 from TJMaxx. They had only 1 package!!!. My table seats 10 and many times I’m out of luck when it come to having enough of one pattern for my table.
I want a candle burning all the time!. But, it sure frustrates me to get one that may put off a tiny bit of scent…or smell until the top layer of wax melts. This is one of the best candles I’ve found anywhere. The scent lasts through the whole candle. It’s from Wal Mart and is their MainStays Label. I use different scents all year. A favorite is Cranberry Melon. They have a myriad of fragrances to choose from, but this is a yummy smelling pumpkin and it’s scents travels from one room all through the house. Another plus…the label pulls off neat and clean so you do not have to advertise where you got it. And some prefer just a glass candle holder. A sure winner all around!
I went on to deck my mantel for the season. I found this nice sign that appealed to me with its clean lines. The writing is done on natural burlap atop a stained wooden frame. This cute fall couple is made of heavy tin and was waiting patiently for me to pick them up at Tuesday Morning. I used a greenery garland with fall foliage picks to lay a base. Then added fall decorative books and 3 wooden stained pumpkins. It’s a little different than I’ve done before, but I really like the color with the rocks in fireplace.
This is the buffet behind my table. The leaf garland is intertwined with teeny tiny lights…
I did go over and help Suzanne, my daughter-in-love, with her mantel, as well. I think it looks so festive!
And that is the extent of my decorating for fall this year. Unless something else grabs my attention. And, of course, whatever masterpieces Levi creates must be proudly displayed. The nice thing about his little tree is we can hang everything right in one spot!
Hope you are getting ready to enjoy the changing of seasons where you live. Here, we don’t really have much fall weather…just a little cooler than summer. All this decorating just makes us feel like it’s fall! Blessings to you and yours!
Today Joy and I put flowers in the church in honor of Mom. Her birthday was August 12. Our dear friend, Billy Rich, did the flowers, as he does every year. We never tell him what to do or what flowers to use…he just knows. He was such a special friend to my Mom, and he honors her by using his talents to fix an arrangement that just shouts, “MRS. ELLA!” He gets it perfect every year! Thanks, my friend!
Mom, sure hope you liked your flowers today. I bet they are nothing compared to those growing in Heaven, huh? I also hope you heard all the kind things folks said about you, too. You are remembered with such love and admiration…a true testimony to the life you lived. We love you, Tonja, Joy, and Pop.
There is nothing exciting to post here today. But, I think sometimes we forget to appreciate the ordinary, everyday things that happen on a given day. So, that’s what I’m doing. Because, when you think about it, some of your best memories happen on a regular day…no planning, no setting up…just everyday life.
Suzanne has started back to school, so that means Levi gets to stay with us and his other grandparents. It’s been a long summer without seeing his love of life everyday. I’ve missed the things we do together. He was here a few weeks ago and watched me cut a lemon to add to some sweet tea. He asked me is he could squeeze it and make lemonade. I told him that he could and that could be one of our first projects when he came back to stay. In the meantime, I found a little lemon juicer that I thought would make it easier. So, here’s how it went…
And, I missed the photo where he looked up after taking a sip and said, “Now, that’s de-lis-ious!” He loved it. And, it really was good!
Then, I made a cake. Yes. I made a cake. I ran across the recipe for my Mom’s famous pound cake. She used to make at least two or three of these every week or so and take them to folks who were sick or shut in. She always made sure Alex had some, too. So, I went to the grocery store and bought all fresh ingredients right down to the flavorings. I wanted it perfect. And, you know what? It was! Just eating a bite of it warmed my heart!
This is an old recipe…called Million Dollar Pound Cake. Just be sure to use the vanilla and the almond flavoring. Makes all the difference. It is a dense cake, and I like to undercook mine a little because I like a little bit of gooey in the center. My mother in law used to call this a ‘sad streak’.
MILLION DOLLAR POUND CAKE
TOTAL TIME: Prep: 20 min. Bake: 1 hour 40 min. + cooling MAKES: 16 servings
1 pound butter, softened
3 cups sugar
6 large eggs
1 teaspoon almond extract
1 teaspoon vanilla extract
4 cups all-purpose flour
3/4 cup milk
In a large bowl, cream butter and sugar until light and fluffy. Add eggs, one at a time, beating well after each addition. Gradually add flour alternately with milk, beating just until blended. Fold in extracts with a spatula.
Pour into a greased and floured 10-in. tube pan. Bake at 300° for 1 hour and 40 minutes or until a toothpick inserted near the center comes out clean.
Cool for 15 minutes before removing from pan to a wire rack to cool completely. Yield: 16 servings.
And, may I add…it is delicious with a little butter spread on a slice and toasted in the oven on broil.
A little later, Joy called and said Pop wanted to give the little boys a treat. So with a set amount to spend, he was treating them to a mini shopping spree at Toys R Us. Oh! My! We filled the cart and then began the process of deciding what to put back. Choices! So hard for little boys to make when they truly want it all. But, a great lesson, as well. We weighed pros and cons of this and that and finally Levi decided on his favorites…two sets of Legos. John Thomas was all set with cars and trucks. What fun!
Thanks, Papa Clyde. This was a real treat. You’re the best!
The day ended with Don and Levi playing in the pool with their new water toys! They played pirates and found all manner of bad guys lurking around the pool. Their water cannons got ’em every time!
What a full day! I may just take an early bedtime tonight…cause…Levi will be back tomorrow!
WE CELEBRATED ! And what a fun celebration it was! Pop turned 90 on the 9th of July, but it was the 17th before we could all be together for the party.
Invitations were sent to two churches and other close friends. We held the party at my house, and, even before 2:00 they started coming in! And, they kept coming! Friends for many, many years were here. Friends of his and mother’s were here. Young men he taught were here. (Some of that teaching took place on a motorcycle!…other times, while gardening in his yard). Friends our age who have much respect for him. And, even those with children the age of mine came to honor, him.
Pop loves to talk. He loves to interact with people. He wants to know who you are and what you are and why you are what you are. And, if you’re not a Christian, you’ll know before you leave him. And, you’ll get a few words of wisdom, too. Like…” the most important decision you will ever make is to become a Christian. The second most important is the choice of a mate. Choose wisely, in both cases.” And…“If you are lucky enough to be born in America, you are blessed beyond measure.”
He’s a talker and he’ll talk as long as you’ll listen. But, he’s also wise and has seen much in his years. And his joy is in giving to others.
Back to the party. Joy and Suzanne and Lori and Tara came over to help me get ready on Saturday. And, Ian came home, too. Adam managed to take off work, and Praise God!, Alex was able to be up with us, too. Tara and Will were here, and Lori with her boyfriend. Tommy was here, too. Only Donald was missing. He had a business meeting out of town that was imperative he attend.
It was a glorious day! Even if the skies opened up and sent a deluge of rain. Many came right on through the rain! So, outside it may have been yucky weather…but not inside. Inside was filled with laughter and reminising…eating and drinking…catching up on lives of each other and children and grandchildren. Inside was filled with the buzz of family! Not all blood kin, but all of the same heart. A group of friends and family who have grown throughout the years to become a part of each other’s life…caring and loving one another…being available when hard times surface…laughing and playing and sharing the good times. That’s what a family is.
To each one who came to celebrate with us…who sent messages…who helped with the party…who braved the rain…who loved us enough to share this special day we us…we thank you from our heart of hearts.
I don’t like spiders, or snakes, or bugs. I do not feel I have authority over even the tiniest of creatures. I just want to flee. I hate to kill them…but I will stomp on a spider. Roaches…I don’t even think I can stand to talk about them…so let’s not. I do, however, have a fondness for two of the tiniest of God’s handiwork…ladybugs and fireflies. I can get along with these…and let them live and be at peace.
But, I recently heard a sad tale abut the firefly. Actually, we used to call them lightning bugs. I remember Joy and I catching them in an old glass jar….and Mama making us let them go before we came inside for the night. (That was when you could play outside and with neighborhood kids with out your parents worrying to death!) I’m glad she had us let them go. If you think you don’t see them much anymore, you’re right. Their population is on the decline. This is because of (according to Mother Nature Network.com) light pollution, pesticide use, and habitat destruction. And, this is the sad part…if a field where fireflies have lived is paved over or built on..the firefly family doesn’t just move over to another field…..they just disappear forever.
Does that make you a little wistful? It does me. I think of the absolute delight my sister and I, barefooted and dirty, had running after that elusive light to try to catch one in our hands. I don’t think I ever did. To get them into the jar, you had to be real sneaky and creep up behind them and bring that bottle down over them quickly! It’s not a skill I use anymore, sad to say. I don’t know when I’ve seen a firefly.
We lived in town on a busy road, but had lots of friends out in the country. And, once you got away from the light around town…right at dusk…you would begin seeing them. We also went to a church out in the country. I can remember when Memphis Baptist was just 2 small buildings. And when we would get out of church on Sunday night, it would just be getting dark. At that time, there were fields all around and a cemetery across the street. They would all be filled with the tiny lights! Of course, we couldn’t go chase them…cause it was still the Lord’s Day, and that was not befitting behavior for 2 young ladies, Daddy said. And besides, we still had on our Sunday dresses and sox and shoes. Mama was not happy if those white patent leather shoes got marks on them! But on Wednesday night, those bugs better beware! We had on school clothes and there weren’t as many rules about them! Even that far back, I remember what a sight it was to see a field all of a sudden light up. Wow. God makes so many wonderful things for a kid to marvel at!
Let me tell you a little about these little creatures. First of all, they are beetles…not flies. They have a chemical called luciferin inside their tails. When this combines with oxygen, calcium, and adenosine triphosphate….a chemical reaction occurs to create their spectacular light! Now, they carry the luciferin in their tail…and I know where the oxygen is…but where do they get the calcium and adenosine stuff from. Does it float in on the air, or is it in the ground. Do they get it from the food they eat? I could not find out. But, isn’t it wonderful to know that every little firefly that’s burned their beautiful light had to have help from the Master Creator to get the job done! And, it’s even more wonderful to think that Almighty, Heavenly Creator that He is, cares about his little firefly family on the earth enough to make sure they have the things they need to shine their light…attract a mate…and make more fireflies!
And, get this…they are light geniuses.! Their light is 100 % usable light where as the incandescent light bulbs that we humans manufacture lose 90% of their energy as heat…only 10% is usable light! Anything God makes is right from the start!
A very wise friend of mine told me once that God is just as magnificent in the tiniest of details we may ever not see, as He is in the large things we notice every day! It’s true!
There are over 2000 species of fire fly, but they don’t all light up. Each species that does light up, however,, has their own specific pattern of flashing. Some can even synchronize their flashes. Now, the whole’ light up thing’ is just a ploy to find a mate! The male flashes one pattern…the female flashes back another. I don’t really know the deciding factor on who they choose…but their lights can come in yellow, light red, green and orange. Perhaps the female has a favorite color!
And should some other creature be attracted to this light and decide it looks appetizing….a firefly also has something in his blood called LUCIBUFAGINS (love that word!) which makes them taste really gross!
Now friends…if you’ve even kept reading this far, I know this is not on the list of information that you would find useful or even interesting. But, when I got to thinking of the fact that I would so hope my little grandson has the chance to see and experience the wonder of ‘fairy lights’…I wanted to know more about them. I want to know where they are. Cause I’m gonna take him. I’m gonna watch it once more through his eyes! And, then I’ll hold that memory as close as I do the ones of my sister and I. Have you seen any in this area?
There are so many wonders in the animal world…but none that I know of as enchanting as watching the yard ‘fill up with little fairy lights’. It’s an experience similar to seeing stars race across the sky. It’s something you never forget…even if you’re 63. It’s just a little ‘magical respite’ from long days and hot work in the sun. It’s in those few minutes between being out working and going into the house for the evening. It’s where you think, “Man, I’m tired, But got a lot of good stuff done today.” But, you just don’t quite want to go in and call it a day. You just stand and survey the world. Maybe hear God say, “Sit back. Put your feet up and watch! I’m have some friends who want to do a show…just for you!” And, He calls His fireflies to perform…just to delight you! Isn’t He a good God! I am remembering my days on the farms in NC with my aunts and Uncles. I can see my Uncle Arthur Lee drive up in his truck and come up under the carport….stomping the mud off his feet as he comes. Then he’d sit down on a chair and take his shoes off and then his cap, and run his fingers through his hair. And, just sit there for a few minutes. I’ve seen my uncle Charles and Uncle Jefferson do the same thing.
You know, I have a song playing in my head…sorta in the background…while I’ve been writing this post. Seems I remember that once upon a time I did a musical with a bunch of kids at school. It goes..“Angels and Lambs, Lady Bugs and Fire Flies told every person in sight that Jesus was born in Bethlehem on that Christmas night” I can even see the book I used. Hmm! Now that was not even in my head when I started this post. Funny, isn’t it, how thinking about fire flies leads to thinking about old summer time memories as a child and then to children and music I taught at school! Yeah, memory is a funny thing. And songs seem to really stay with me.
I hope you see some fire flies soon! Reckon what memories they will lead you to? I’d love to hear about it, if you’ll share. Just leave a comment at the end of the blog. I’ll see it!
PS. The Great Smoky Mountains National Park has firefly tours!