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

Wednesday, August 24, 2011

I Can't Stay Mad at You ~ Part Two ~ 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."

We were among the first to get Comcast high speed Internet service. We were part of a "beta test" in a very limited area of metro Atlanta. We were all thrilled, as we had been using dial-up service, and, well, you may remember how awful that is! The high speed service was wonderful, and amazingly fast. At the time, the boys had a computer, just one, that they had to share. That, my friends, was a recipe for disaster. Jeff was a computer "hog", and poor little Brian just had to stand by and watch his brother! At some point, this usually degenerated into a fight ... sometimes verbal, sometimes physical. That's when we would have a computer "time-out" and agree to certain rules for sharing. That would last for a day or two, then Jeff would be back to his old ways, and Brian would just be the "onlooker". We'd have another "engagement", and then they would be forced to return to the sharing rules for a while. But, most of the time, Brian would be content to watch, soaking everything in like a sponge.

I, too, was an "onlooker", watching them like a hawk when they were using the computer, but I couldn't be there every single second. Our first computer "on-line incident" was with Jeff. He was in the seventh grade, and we had just gotten Internet service. One night the phone rang. It was a parent from the boys' school saying that Jeff had created a horrific and offensive website that was frightening some of the girls at school. She went on to say that this website said Jeff hated horses! Go figure ... I looked at his creation, it consisted of cartoon horses, and it wasn't particularly offensive. Apparently, though, it was to some of the girls in the school, and consequently the parents. The girls seemed to think that a 12 year old was going to somehow manage to travel alone to the stable where the girls' horses were kept and then somehow manage to do harm to their horses. Hmmm .... I told Jeff to take it down, immediately. He did, and we moved on. Still, it amazes me how the boys could do all of these Internet things. Creating and maintaining a website is still something I can't do!

Shortly after the horse website event,  Brian sent a prank email to his teacher. It was an e-card that implied, no stated, that this particular teacher was "fat". That was much more serious. The school took a dim view of his little "joke", as did his parents. Appropriate punishment was meted out, and Brian was off the computer for quite a while.

Next came Jeff's "My Space" incident. I was at work one day when I received an "anonymous" email. It said I should check out Jeff's My Space page and gave me the link. Well, I clicked that link, and I was appalled, shocked and angry! The language was horrific. I checked his friends' pages, and they were equally as bad. I wondered, "How should we handle this one???" It came to me in a flash ... I signed up for My Space with  the screen name "Your Loving Mother". Then I sent Jeff a one word message - "BUSTED"! When I arrived home, Jeff was sitting there in front of his computer just staring at the screen. I said, "So, you got my message," to which he replied, "Yes." "And, you are going to do what ....???" His beautiful blue eyes were terror-filled, but he held his head high and said, "I'm sorry, Mom. I'm taking it down. You can watch me." I watched while he deleted all the posts and closed out his My Space account. We had a lengthy discussion  about the use of foul language. How it is mostly used by people who aren't smart enough to think of the proper words, so they resort to mindless garbage. We talked about how things posted on the Internet can be harmful to him and to others. He seemed to listen intently ... he never had another My Space account. Facebook, well that's another story for another day.

These incidents, though upsetting, disappointing and awful at the time, were really only blips in the screen in the boys' race to become wizards of all things electronic! When we wearied over the constant bickering about computer usage, I brought an old one home from the office and gave it to Brian. Within the week, we had a "home network", long before most of us even knew what a home network was! It was pretty crude, consisting of an ethernet cord strung across the upstairs hall from Jeffrey's room to Brian's and connecting their computers. Now, they shared the Internet connection and could compete against one another with video games. They worked very hard on their "network" and were so proud of their accomplishment! Several years later, they decided to go wireless with their network, and purchased a wireless router. That was great, because now I could share the Internet, too! We had a "whole house" network .... That little wireless router lasted for years, and was still going strong when Mr. Horne and I moved from Atlanta to Florida last year. Occasionally, it would need rebooting, but before Brian left for college, he showed me how to do that.

Both boys, with very little formal training, became experts on windows and related programs. By the time they were 16 and 17, they started working for me, putting together my business Power Point presentations, slide shows and music videos. I would send them copy for the slides, and they would add graphics, music and finishing touches. If a presentation fell during out-of-school times for them, one or the other of them (sometimes both) would dutifully accompany me, checking out the presentation, making sure we had a back-up disc, connecting my lap top to the projector, and any other things necessary, all of which I had absolutely no clue about. And, yes ... I paid them for their efforts. They really were amazingly good! They were also my IT guys for the office. They knew how to fix just about anything that went wrong, so they were always my first call when we had a problem.

But, their fascination with electronics wasn't limited to just computers. They had just about everything you can imagine ... Nintendo, Gameboys, PlayStation, XBox, Wii, GPS devices, cell phones, iPods, iPhones, Mac Books, Satellite Radio .... you name it, they had it, and they were usually the first of their friends to get the latest version! Oh wait, lest you think we were overindulging parents, let me tell you that we weren't. You see, in addition to working for me every now and then, both boys had jobs .... Brian at McDonald's and Jeffrey at Dominoes. They would save their earnings to buy these gadgets. Sometimes they would pool their resources and share the games and game boxes. The amazing thing was that they seemed to require no learning curve for any of them. They simply picked them up and started using them!

Of course, when they had a combined cell phone bill of over $2,000 one month from their over use of the "texting" feature, we had to have a heart-to-heart. Needless to say, I was furious, so I marched them to the Verizon store, where they had to pay a hefty portion of that bill, as well as agree to a new plan with limited texts. They were cured from that point forward and soon learned how to keep track of their usage online to make sure they didn't go over. They weren't afraid of much of anything, but the fear of having to pay for over-usage again, kept them in line!

I could never stay mad at the boys for very long, even when they did things that causes a parent's heart to sink. They always had a way of getting back in my good graces with just a smile, a funny saying or doing something incredibly thoughtful without being asked. I miss them terribly. I miss not being able to call them when I have a computer problem, when my Blackberry isn't working properly, when my wireless connection goes out, when the cable is acting up. I miss not having them here to tell me how to fix these things.

But, here's the thing ... there is something that I will be angry about forever, and that's Leukemia. You see, if not for Leukemia, they would be here with me today. Leukemia is a wretched disease that impacts not only the patient, but everyone whose life is touched by the patient. Though I know that everything medically possible was done for Jeffrey, still we all, including Brian, had to sit helplessly by while he wasted away. Brian, who tried so hard to save his brother ... his lifelong companion and very best friend ... with his donation of stem cells for Jeffrey's transplant, was hit particularly hard by the devastating effects of Leukemia. Leukemia was the enemy of our boys ... now it is mine. I hope to make it yours. You can help in the fight ... visit Jeffrey's Voice to learn more about our mission to find a cure. Together, we can reach the day when no more are lost, when all remissions are permanent, and when finally there is a cure for all.

Sunday, April 24, 2011

Spiders and Snakes ~ Jim Stafford

"I don't like Spiders and Snakes & that ain't what it takes to love me ..."
From the time I was a very small child, I was so frightened of things that crept, crawled and flew. I was afraid of anything that didn't have fur, and some things that did ... like mice and, dare I say, rats? Think my darling Mother taught me this fear, or perhaps it was in my genes. She was highly allergic to wasp, bee, and hornet stings and maybe her running from them affected me. Whatever, I still don't like them, but I'm not afraid anymore. When you face the worst, you lose the fear, I guess..

My Father was in the Air Force and was stationed at Patrick AFB, FL when I was about five. We were watching home movies one night ... this was before TV, or at least TV as we now know it. I looked up at the screen. There was a huge spider there ... huge and black . I remember screaming ... remember my Daddy taking it away. Remember him saying "It's a Black Widow" ... don't remember what he did with it, but remember being glad it was gone!

Then, when I was in the 7th grade, I met the first love of my life. His name was Johnny Martin, and he lived in a house just around the corner from me. One day, after school, he invited me over. He said, "I have something I really want to show you." I was in love, so I said "OK". His Mom was there, keeping a watchful eye, and followed us in to Johnny's bedroom. It was filled with aquarium after aquarium of snakes, lizards and spiders. I said, "How nice", but it was the end of that romance ... wondering whatever happened to Johnny Martin.

Life goes on, but my fear didn't cease for things that crawl in the night. Married my soul mate and partner for life, Mr. Horne. He really had no patience for my fears. I would scream. He would say, "What's wrong?" Usually, some little bug, but they were huge to me. He would rid us of the offending insect and that would be the end of it.

When our oldest son, Allyn, was born, my Mom and I, regrettably, instilled the fear and loathing for these creatures in him. He will dispose of these creepy, crawly things, but he doesn't like them!

But there was no fear in Jeffrey and Brian ... not from the moment they were born. They would delight in frightening me with frogs, lizards, and bugs ... bringing them inside, putting them in my face, just doing what little boys do. They ate worms and laughed about it. They are amazing! They especially loved taunting me when we came to the beach. There is a tree-lined boardwalk over to the ocean from our place. One day, we were walking over and I asked, "Boys, do you think snakes get up in the trees?" They just said, "Yes." I asked, "Do you think they would drop down on us?" They just said, "Yes." Didn't ask anymore questions, but I still look over my head every time I walk across that boardwalk!

One night, we were at the beach for a long weekend. Mr. Horne had gone to bed and the "boys" and I were watching, of all things, "Arachnophobia" - an awful movie about spiders invading and attacking a family and their friends. I was lying on the sofa, Brian on the love seat, and Jeffrey sitting in his chair. We came to a particularly exciting part of the movie, and we were all on the edge of our seats. Suddenly, from the ceiling, a spider made his way, totally unnoticed, down his web, right onto my chest. I screamed ... so did the boys. Then they laughed ... so did I. Jeff disposed of the spider, and we went back to watching our "spider" movie. There are no coincidences!

For Jeff's High School graduation, his beautiful girlfriend, Heather, gave him a Knob-tailed Gecko. Jeff tried to sneak it into the house without my knowing, but, as always, I was at the back door waiting for him to come home. He suggested I go to bed while he took care of something. Well that just raised my suspicions, so I said "No". He said, "OK, Mom, but you won't like this." In a few minutes he came in the back door with this lizard in an aquarium. He said, "I'm sorry, Mom. Please don't be mad. Heather gave it to me for graduation." What would you have said? I helped him in and just asked him to keep it away from me. It ate crickets ... more bugs! When he left for college, he took it with him, and I breathed a sigh of relief. At least it was out of my house.

But then, while away at school, he bought a Pygmy Ball Python ... to match his Gecko, I guess. When he became ill with Leukemia, he brought the snake home. Heather kept it for a while. Then it came home and lived in our basement. It ate mice ... how disgusting! Still, it made him happy and that was enough. Don't know what happened to the Gecko. It didn't come home. But, I found a wonderful place for the Python after we lost Jeff. It broke my heart to see that little snake go ...

I live now in a place where I and creatures of all varieties co-exist. Went out the front door this afternoon and a 6' snake slithered across the walkway. I DO NOT like these things - no, "I don't like spiders and snakes" - but like I said, they don't scare me anymore. The thing that scares me most of all is losing just one more person to Leukemia and Blood Cancers. Did you know ... nearly 1,000,000 people are living with these cancers today? Over 150,000 are newly diagnosed each year, and more than 50,000 are lost each year to these wretched diseases. Together, though, we can find a cure. Will you help??? Visit Jeffrey's Voice to learn more.

Friday, April 15, 2011

Short People ~ Randy Newman

"Don't want no short people ... don't want no short people, 'round me"
When Randy Newman released this song, he was vilified.  How dare he be so insensitive ... so politically incorrect?? Radio stations banned the song, state legislatures tried to pass legislation against it. He was accused of discriminating against short people ... it almost ruined his career. Come on, folks, it's only a song, and a pretty funny one at that. Get a grip! Where's your sense of humor? When I first heard this song, back in the day, I had a particularly difficult client who happened to be short ... he was about my size - 5'-4" on tippy toes. I think his shortness had nothing whatsoever to do with my difficulty to engage with him, still I heard this song, and I thought, "Yeah, that's George."  I liked it! Not meaning to offend anyone, but I am older now, I'm not politically correct, and I have lost two of my three children. Thinking I may have earned the right to say whatever I want! Besides, it's the perfect song for my post tonight ... so enough of that ... 

When Jeff and Brian started talking, they spoke in full sentences with incredibly correct grammar. Their older brother, Allyn, made sure of that. I wanted "baby talk", but instead I got, "Mommy, do you think it will rain today?" Or, "Mommy, what are we going to do today?"

So, one day when Jeff was about 4, he and I went to the video store to find a movie for him and his little brother, Brian. We were engaged in deep discussion about which movie to rent, when a man came around the aisle. He looked at Jeff, then looked at me and said, "Is he a midget?" We spoke a few minutes ... he was amazed by Jeff's command of language. He left, Jeffrey and I rented our video and headed home. Jeffrey never asked me about "midgets", but I could see he was thinking. We talked very briefly about  being short. But, his mind was working ... I knew he wanted to ask, "Mommy, am I a midget??" He didn't, but for the next several weeks, when we would go to the drugstore, the grocery store, or anywhere, and someone would tell him hello ... oh wait, Jeff was a beautiful little red haired boy and people always wanted to talk to him ... the first words out of his mouth were, "Hello, I'm NOT a midget." Everyone would just stare, but he was so cute, it didn't matter.

As the boys grew, Jeffrey was always taller than his little brother Brian. They are only 16 months apart in age, still Jeff shot up like a bean sprout. Brian was a slow grower ... beautiful, but pudgy and short. Jeffrey always called his brother "Shorty" ... I would say, "Just wait, Jeffrey, one day he will be a whole lot taller and bigger than you ... then you won't call him 'Shorty'". Took until Brian reached the age of 15 or so, but he outgrew his brother by leaps and bounds!

And when the guys reached the soaring heights - 6'-1" for Jeff and 6'-3" for Brian - they would delight in standing over me and saying, "MOM, you're short!" I would just smile and say, "Yeah ... and you're tall." How I miss that ... how I miss them.

But here's the thing ... Leukemia and Blood Cancers strike indiscriminately... no height, no age, no weight and no ethnicity is immune to the horrors of these diseases. It isn't hereditary and while there may be risk factors, those who are exposed to the risks may never get these diseases, and those who are never exposed to the risks, might. Every four minutes of every day, there is a new diagnosis. Every ten minutes of every day, someone is lost. Progress has been made in the search for a cure, but there is much work yet to be done. Will you help?? Learn more about Leukemia and Blood Cancers at Jeffrey's Voice and join us in the fight for a cure.

Tuesday, April 5, 2011

Sally Go 'Round the Roses ~ The Jaynettes

"Sally, baby cry, let your hair hang down. Sally, baby, cry, let your hair hang down. Sit and cry where the roses grow. Sit and cry, not a soul will know."
An amazing and wonderful little West Highland White Terrier came into our lives in 1997. She was Brian's ninth birthday present, but she was also more. See, that's when Allyn left for college, and I think Mr. Horne wanted to distract me. I was so sad ... I knew Allyn would never come home permanently, again, and that's how it should be. But it made me sad, so I left the light on in his bedroom for months.

We picked our little Westie up after school on the afternoon of Brian's birthday, September 18, 1997. We let Brian decide which of the little puppies would be the one for us. He chose Sally because she immediately came to him, nibbled at his toes, and made him smile. He carried her back home in his lap ... he was so proud!!! She was so tiny!!! We argued about names ... Jeff, Brian, Mr. Horne and I. We couldn't agree. Finally, I said "How about Sally??"  Surprisingly, everyone said OK. But, I wanted a bit more! I picked the name "Sally" because my wonderful Mom used to read me a Little Golden Book at bedtime every night ... "Sally, Skip Under the Bed." It was about three mice, Ned, Ted, "Sally Skip Under the Bed", and a cat named Stanislaus. That cat could always catch Ned and Ted, but he could never catch "Sally Skip Under the Bed"! So, our little Sally is officially named "Little Miss Sally Skip Under the Bed" ...

But this post is about Sally "going 'round the roses". Every night, Sally and I walk around the circle at our home in Florida. It's the same circle that the boys and I walked her around each night when we were lucky enough to come down here for our weekend and summer get-aways! It's really beautiful now, with the roses and azaleas in full bloom. Sally will soon be 14 years old ... pretty old for an amazing little Westie. Sometimes, she is weary and can't make it all the way around, but that's okay, too. You see, except for her, I would likely go screaming down the street in utter desperation and sadness. But instead, Sally and I  walk around the circle ... around the roses. Her life changed because of Leukemia, too. I think, like me, she cries every night that we walk that circle. Yet, she stays strong, and she keeps her ears and tail up. For as long as she can, we'll walk that circle, "cry where the roses grow, and not a soul will know".

Here's the thing ... Leukemia and blood cancers are wretched diseases. They are insidious and life changing, not only for the patient, but for those who love the patient so dearly. It's a roller coaster ride, and it changes moment by moment, minute by minute, second by second. So, Sally and I are "going 'round the roses" in the search for a cure, working for the day when no others have to suffer the devastating effects of blood cancers. Will you help us??? Join us at Jeffrey's Voice. Together, we can live in a world free of Leukemia.