Showing posts with label Leukemia; National Marrow Donor Program; BeTheMatch. Show all posts
Showing posts with label Leukemia; National Marrow Donor Program; BeTheMatch. Show all posts

Tuesday, December 6, 2011

Too Much To Dream ~ The Electric Prunes

"I had too much to dream last night ~ too much to dream. I'm not ready to face the light ~ I had too much to dream last night."
"I've always thought that 'The Electric Prunes' is a strange name for a band, or just about anything else, for that matter. Still, they did have this wonderful song way back in the day, that perfectly describes my feelings when I woke up this morning."

That's how I started this post over two months ago, back on December 6 ~ the day after I had a really remarkable dream. I've been staring at it almost daily since that time, but I just couldn't seem to make myself move beyond those first two sentences. The thing is, this is about a dream that I had that was both upsetting and uplifting. In the end, to me at least, uplifting best describes it, but I wondered how and if I could write about it in such a way as to convey that feeling. There are those who will say that this dream was just the result of an over-active imagination of a sad, pathetic and distraught woman clinging to the memory of her amazing children so tragically lost to her in this life. There are those who will say, "Well, she's finally gone over the edge." But, there are those who will understand and believe that this experience was real in every way. You see, I'm pretty sure that we have an everlasting connection to our loved ones both in this life and beyond. I've had many experiences since the loss of my children that more than confirm that belief for me. This was just one of those ... So, here goes ~

Have you ever had a dream that was so real, so vivid, so overwhelming, that you really weren't ready to face the light the next morning ... a dream in which you could talk, taste, feel everything and everyone around you ... a dream that filled you with every emotion you can imagine ~ fear, joy, sadness, love, hate. That was the dream I had several months ago, and it is still as real to me this moment as it was when I was wrapped in it. This is what happened in my dream.

I was in my car on a beautiful, sunny summer day in Atlanta. I was driving down Mt. Vernon road heading home from my office. It was early afternoon. Suddenly, I saw Jeffrey crawling along the side of the road. I stopped the car and seemed to fly out of it to his side. He had all of his beautiful red hair, and he looked healthy, except that he had been viciously attacked by someone or something, and he was trying desperately to get home. I was terrified and horrified, but he just got into the car and smiled. He was missing both feet. His left arm was gone from his elbow down. Sick with fear, I looked at him and said, "Oh Jeffrey, what happened." With those amazing aquamarine eyes and a smile on his face, he said, "I was attacked, Mom, but don't worry. I'm okay." We drove a while, and it seemed as though we were on a country road somewhere. The colors were so bright ... the blue of the sky that matched Jeffrey's blue polo shirt, the green of the grass and the trees, the bright yellow sun shining on the blacktop of the road. I remember thinking that this was an odd route to get to the hospital and that I had to hurry to get him there, yet somehow I was confident that I was going the right way. Sure enough, in a matter of seconds, we found ourselves in the Emergency Room at Emory Hospital. Jeffrey was on a table and several Doctors were treating him ~ cleaning him up and stitching his wounds. One of the Doctors looked at me and said, "Okay, Mrs. Horne. We've done all that we can do for him. You can take him home now." I said, "But, Doctor, he has no feet, and he has no arm" to which the Doctor replied, "I know, and I'm sorry, but there's nothing else we can do."

Jeffrey, hopped down off the table and, though he had no feet, walked with me to the car. He was walking slightly in front of me, so it was easy to see that he had on flip-flops. He had no feet, but he had on his favorite flip-flops. He turned to me and said, "Hurry up, Mom. We have to meet my friends at the California Pizza Kitchen." He was walking quickly across the bridge to the hospital parking lot, and I was thinking "how can he walk? He has no feet, and he has on flip-flops." It just didn't seem to bother him at all.

When we arrived at the California Pizza Kitchen, it was crowded with his friends. I knew some of them, but others, I didn't. I sat down with a group of boys from Jeff's and Brian's high school. One of them asked, "Mrs. Horne, where's Brian?" Before I could answer, Jeff said, "Oh you know how Brian is ~ he's everywhere!" Jeffrey was talking and laughing and going from table to table to visit with his friends. Then he came over to the table where I was sitting and took a seat. His friends were kidding him about the Jeff  Gordon NASCAR cap he was wearing. The pizza came and everyone was eating, but I felt overwhelmed with a great sadness. It was a sadness mixed with fear and sympathy/empathy for my child. I wondered how he felt being with his friends when he had no feet and only one arm. I wondered how he was feeling inside, but he just kept talking and enjoying himself. I found myself looking down at the floor. I remember thinking how hard it was to look at Jeffrey, and I wondered, again, if his friends felt that way. Suddenly, Jeffrey turned to me and said, "It's okay, Mom. You don't have to be afraid to look at me. I'm alright, and I'm having the time of my life!!!" I remember looking up to see him standing beside my chair. His feet and his arm were no longer gone. His full head of gorgeous red hair (pre-buzz) seemed to glow. He was tall and strong and whole and well and smiling brilliantly at me.

I woke up with a start to a voice saying "It's time to wake up now." I had fallen asleep in my recliner in the den in front of the television. The sun was just coming up. I looked around the darkened room to see who was telling me to wake up. There was no one there. Mr. Horne was snoring away in the master bedroom, and Camilla (Jeff's English Bulldog) and Sally (Brian's little Westie) were both sound asleep. Still, I know that I heard that voice, distinctly and clearly. It was not a part of the dream. You see, it, like the dream, was real. All morning, I thought about "the dream" and how truly amazing it was in every way. I thought about how wonderful it was to share that time with Jeffrey even though, in my "dream", he was terribly injured. And I thought about how, when he was so ill with Leukemia, he behaved much like he did in my "dream". In spite of the horror, he managed to have "the time of his life" those last few months.

Here's the thing ... in this life, Jeffrey was, indeed, attacked by a monster called Leukemia, and it robbed him of his health and his very life. But he never let it get him down. He never gave up, and he continued to live life to the fullest until the day he died. His strength, courage, spirit, good humor and faith inspire me to continue to wage war on this monster called Leukemia. Leukemia was the enemy of both Jeffrey and Brian. Now it is mine, and like Jeffrey, I will never give up in the fight ~ not until I draw my last breath. Both of our boys handed me a torch, and I want to use it to light yours. To make Leukemia YOUR enemy, too.

Will you join me in the fight for a cure for Leukemia? There are nearly 1 million living with Leukemia and blood cancers today, and every four minutes of every day there's a new diagnosis. There are no known causes for Leukemia or known ways to prevent it. That's why research is so critical. Jeffrey's Voice funds research that will lead to a cure, and that is our only mission. Together, we can win this fight. Together, we can find a cure. Together, we can reach the day when no more are lost to this wretched disease, the day when all remissions are permanent, and the day when finally there is a cure for all. To learn more about the mission of Jeffrey's Voice, please visit http://jeffreysvoice.org/ ~



Sunday, May 1, 2011

Brass In Pocket ~ The Pretenders

"'Cause I'm gonna make you see ... there's nobody else here, nobody like me. I'm special, so special ... I've got to have some of your attention ... give it to me!"

As parents, we know that each our children are special! No matter how many we have, whether it is one or, in the case of my Aunt Lois, 15 (wait ... there were several sets of twins), each has a unique personality. Each has special talents. All of MY boys do, and I know yours do, too. It's just that some children scream louder than others. I was blessed to have three beautiful and amazing boys. This is about the loud one!

Before Jeffrey was born, he had my attention. My wonderful Doctor told me early on that he was partial to "little red-haired" girls. You see, he had four beautiful red-haired girls of his own, and thought adding one to his crew might be a good thing! So, he told me, "Better hope you don't have a little red-haired girl ... I just might have to snatch her!" We knew shortly thereafter that Jeffrey would be all male! He was breech, so we spent hours with sonograms, and in the Doctor's office trying to turn him. One day after a particularly trying session, Dr. Newsome said, "This baby is trying to tell us something ... he's not going to turn, and we're not going to try anymore." From his very beginning, Jeff had a mind of his own!

He was born early one Wednesday morning in March by C-Section, and he came into the world screaming. He wanted everyone to know that he was here! I looked at him, then at Dr. Newsome, and said, "He has red hair, but he's a boy, so you can't have him! He's mine." Such an especially beautiful, little red-haired baby boy he was, with huge aquamarine eyes. 

We had a longer than usual hospital stay because of the C-Section, and he continued his screaming, except when he was in the room with me. The nurses would bring him to me and say, jokingly, "Mrs. Horne, please take this 'hateful baby'!" After we brought him home, he became affectionately known to us as "the hateful baby"! Oh, he was never hateful, just wanted us to pay attention. And, we did.

Before Jeffrey reached the "terrible twos", he had a younger brother, Brian. They were 16 months apart and for a while, Jeff called himself "Brian"! He was over that as soon as Brian could walk and play with him. Then, Jeff talked his little brother into all kinds of things! Eating worms, bleaching his hair, jumping from the top of the swing set ... all things that Jeff was afraid to do himself, but wanted to see how it would turn out if he had. Brian would do just about anything his big brother told him to do ... they fought like cats and dogs, but they loved each other very much.

When Jeffrey was a young child, he clung to me as though I were his life. It was hard to get out of the door every morning. And if I had to take Brian to the pediatrician and leave Jeff at home, you would have thought the world had ended. Such an amazing child! He could infuriate me more than you will ever know, and caused my heart to sink many more times that I like to remember. Still, he never left home without telling me where he was going ... was never one minute late without calling to say where he was and when he would be home ... and always took care of his little brother.

As soon as he could write, Jeffrey began scouting out places he could let his presence be known. Everywhere we went, he would find a spot to write, "Jeff was here." It was almost as if he knew, early on, that his time in this life wouldn't be long, still he wanted everyone to know he was here ... he wanted to affirm his presence. I'm still finding scraps of paper, books, calendars and things where he wrote "Jeff was here." I treasure each of them. Yes, my angel, you WERE here!!!

But, it was after Jeffrey's diagnosis of Acute Mylogenous Leukemia that he showed how truly special he is. He was diagnosed on his twentieth birthday. One night a few days later, when he was hospitalized, he sent me a text. It said, "Mom, I don't know if this will end good. Are you okay with that?" I texted him back saying that it certainly would end well, and that this was just a blip in the screen of his life. That's what we all wanted to believe, but it wasn't to be.

Through the eleven months of his illness, Jeffrey kept his sense of humor ... we threw food at the hospital walls, snuck him out every now and then, and generally did anything that would keep that amazing smile on his face. He never lost faith, and he never lost hope. He never gave up, no matter what the Doctors said. He was one determined young man, though he faced, head-on, the reality of his situation. Unless you, or a loved one, have personally experienced the treatments for Acute Leukemia, you can never know how horrific it is. Out of the 11 months of his disease, he was hospitalized for ten of them, off and on. Leukemia is not a cancer that can be removed by surgery. It circulates throughout the bloodstream, attacks vital organs, and just when you think it is gone, you find that it has hidden out somewhere, and it comes back with a vengeance. Jeffrey endured all of this with strength and courage that amazed me. It was especially difficult preparing for his Stem Cell / Bone Marrow transplant. That was right after Memorial Day, and I remember thinking ... after hearing what his prep would be ... I just need to pick up my baby and run ... run anywhere away from this. That's another song for another day ... "Nowhere to run to baby, nowhere to hide." There was nowhere to run ...

We made it through the transplant, and Jeff was officially in remission for three months. During that time, he decided he wanted an English Bulldog. Anyone out there ever owned one of these wonderful animals? Well, they, like Jeffrey, are high maintenance. We did a lot of research, found a reputable breeder, and brought our little "bully", Camilla, into our home. Jeffrey's transplant failed not long after, so he was never really able to take care of her. She became mine. Like her owner Jeff, Camilla demands constant attention, and she is just as determined and strong-willed as he! 

When his stem cell transplant failed, Jeff participated in a number of clinical trials. Each time I would ask him, "Jeffrey, are you sure you want to do this?" He would say, "Yes, Mom ... it may not help me, but maybe it will help someone else who has leukemia." And so, that's what he did. When it became clear that his prognosis was about as bad as it could get, he looked at me one night with those beautiful aquamarine eyes and said, "You know, Mom, God has a plan for this. It may be that I will get well and that I can help others with Leukemia. But, maybe I won't ... and then you can."

Here's the thing ... Jeffrey ruled my life for almost 21 years. He left me our little "bully" Camilla, who rules my life in his place. Thinking he did that on purpose. He's special and had my attention from the "get go"... see, "there's nobody else here, nobody like you," Jeffrey. But, all of those struggling with Leukemia and Blood Cancers are very special. Like Jeff, they are strong and courageous. Jeffrey handed me a torch ... to find a cure, and I will fight for that until I draw my last breath. No more can be lost to this wretched disease. Visit Jeffrey's Voice to learn more. Mine is only one story ... one song. There are so many others. For all of them, help us find a cure.

Sunday, April 10, 2011

I CAN'T STAY MAD AT YOU ~ Part One ~ Skeeter Davis

"You can make me cry, you can break my heart, but I'll never say we're through. Even when I try, I can't stay mad at you."
There aren't enough pages in this blog or any other to describe the many times I was just so furious with the boys. They were always into mischief, and they delighted in seeing just how far they could push. In fact, this is just Part One of many parts of "I Can't Stay Mad At You". Still, through it all, those big and beautiful smiles took the anger away, and I could never stay mad for very long. But there is one time that is etched into my heart and memory - Brian and the Laundry ...

See, we did laundry at our house once a week ... except during football season, when the sweaty, smelly practice clothes required a nightly wash! The deal was that the boys would bring me their laundry baskets, then come back after the clothes were washed, dried and folded. They were supposed to pick up their clean laundry and put the folded clothes neatly away in their drawers. That worked great for a few months, but then they started just picking up their folded clothes and stacking them on top of their dressers. After a few "go to Jesus" meetings, Jeff started putting his clothes away. But, Brian ... well, for a week or two.

I was after Brian daily about putting his clothes away ... such a minor thing, really, now that I look back on it. What difference did it make? Still it bothered me. He promised me, nightly, that he would put them away, but the next morning there they would be ... stacked on top of his dresser.

One Saturday, when Brian was about 15, I took the first load of his clean laundry up to his room myself. He was sitting on his bed reading, and there were clean, folded clothes stacked on his dresser. It was more than I could take! I said, "Brian, I will be back in thirty minutes with more clean clothes. Before I get back, all of these clothes on your dresser had better be put neatly away in your dresser drawers ... I mean it!" He promised, "I will, Mom."

Thirty minutes later, I was back ... clean laundry in hand. I looked at Brian's dresser. It was amazing! There were no clothes on top. There was nothing there! The dresser top was bare. I couldn't believe it ... I said, "Brian, that's wonderful! You put your clothes away." He said, "Yes, I did, Mom."

Thinking I should do something nice for him, I decided to put his newly laundered clothes away for him myself. After all, he had put away weeks worth of laundry! So, I opened his dresser drawers ... I couldn't believe what I found. All of the neatly folded clothes I had worked so hard on over the weeks were a jumbled, wrinkled mess just stuffed into his dresser drawers.

I was furious! So, I shrieked at him, "Brian, look at this??" He lept off of his bed, studied the dresser drawers, then looked at me with big, beautiful brown eyes, a perfectly straight face and said, "MOM, this is OUTRAGEOUS. It's awful ... how in the world could this have happened???" Then he began straightening the clothes and putting them back in order. I just stood there looking at him in shock and awe as he neatly folded and put his clothes away. I had to leave the room to keep from laughing out loud. Couldn't stay mad ... don't think you would either. What an amazing child ... he had me wrapped around his little finger, but in the end, I won, too. The clothes were put away, and we never had that problem again.

Here's the thing ... everyday, we face irritations and annoyances that anger us. Sometimes its hard to remember what's really important, to keep things in perspective, and, most of all, to keep a sense of humor. If only I had another opportunity, I would let our boys stack the laundry to the ceiling. Truth is, there are so many other things to be concerned about ... what's a little laundry, after all?

Yet, there IS something that I can stay mad at ... in fact, I will forever rage against it, and I will fight it with every weapon I can find. Leukemia. My anger at this wretched disease will never end. I learned yesterday that another young and beautiful butterfly is in the struggle of her life against this horror. But, I know that, together, we can find a cure. Jeffrey's Voice has only one mission ... to fund research that will lead to that cure. There is so much work to be done. Will you help??

Friday, March 25, 2011

Rock and Roll Baby ~ The Stylistics

"Tootsie roll soul and little white shoes, Mama's (sic) sure proud of her little, bitty Rock and Roll Baby, singing at the age of two ... he can barely talk but he sure knows how to sing the blues."
Jeffrey and Brian have an older brother, Allyn. He is nine years older than Jeff, and ten years older than Brian, and he is my original "Rock and Roll Baby"!!!! He was dubbed that by my next door neighbor at the time, because he so loved to sing and dance ... even before he could walk and talk. He loved the "oldies", but he really liked disco, too, so he was also known as the "Disco Baby". In fact, when Allyn was about six months old, there was a disco show that came on television one night a week, and he was fascinated by it. You have to be pretty old like me to remember it, but I think it was called "Dance Fever" hosted by Denny something-or-other. It was a disco dance competition, but no celebrities or pros, just everyday people doing their disco thing. Allyn would sit in his little walker and bounce to the music, trying to sing the songs. He would laugh and clap and then cry when the show ended!

He was a "victim" of my singing, just like his brothers, except that, unlike Jeff and Brian who quit singing with me when they were about 9 and 10, Allyn sang with me until he reached the teenage years, when he decided he really didn't like to do much of anything with his Mom, whom he found to be "totally out of touch" with the world. Anyway, before then, Allyn always slept with the radio on. I would put him to bed, turn his radio on, kiss him and tell him goodnight. But, he did NOT go right to sleep! I would peek in on him, and he would usually be standing in his crib, dancing and singing to the music. If a song played that both of us especially liked, he would call me so that we could sing and dance together with the radio. We loved that!

When his brothers were born, Allyn would sing to them, too. He knew all of the rock and roll lullabyes that calmed them both, so if I was travelling, he would fill in for me. He was so very proud and excited to have his brothers, as he had been an "only child" for quite a long time. He loved to play with them, but he also loved to bedevil them, cause them to get into trouble, and make them do things that both he and they wished later that he hadn't. But, hey, that's an older brother for you.

Allyn has grown into a fine, very successful and amazing young man, but he will always be my Rock and Roll Baby. Through Jeffrey's illness, he was with us as much as he could be, though he had a very demanding position in DC. When the Doctors recommended that the best treatment for Jeff was a bone marrow transplant, Allyn was tested to determine if he was a match and would have gladly donated his marrow to save his brother. As it turned out, though, Brian was the better match. I think he was disappointed that he couldn't help his brother in this really personal and direct way.

Allyn took the loss of his brothers extremely hard. Once again, he finds himself an "only child". Still, he manages very well and continues with his very successful career. He makes me smile, and he makes me very proud.

Here's the thing ... there are so many leukemia and blood cancer patients in need of marrow matches who are not lucky enough to have siblings who may be a match. Even if they do have siblings, there is only a 1 in 4 chance that one may be a match. But you can help ... join the National Marrow Donor Program and BeTheMatch for someone in desperate need. The test is quick and painless, and you could save a life.