Evan is having a good day today. For that matter the past 8 days have been good days. We measure the quality of the day based on simple factors: presence of nausea, presence of pain, amount of energy and participation in events/activities outside the home.
Each Monday we take a trip to Evan’s pediatrician and have blood drawn for lab work. The numbers are available the following day and we have been charting the ups and downs of various numbers. While all the numbers are important for ongoing life, the chemo knocks the immune system off line for a couple of days and it takes his body time to replace these key ‘fighter’ cells called neutrophils. These cells are the primary component of a person’s WBCs (White Blood Cell). When these counts get to below 500/micro liter Evan becomes susceptible to infections that would require hospitalization to control. With each passing chemo treatment, Evan’s time in the danger zone increases; first round ~1 day, second round ~5 days, third round – we’ll let you know.
With that information as a backdrop; We are getting ready for his next MRI which will be done on the afternoon of February 17. Evan also has a return visit to the onco-surgeon on February 12, and his next round of chemo is scheduled for February 20. The visit with the onco-surgeon will be to review progress of the chemo and determine the next step in his treatment course. The MRI will provide a more quantitative evaluation of the tumor size and its response to chemo (Has it grown/shrunk and by how much).
On the homefront, things are busy. Evan was able to get his computer to school for initial evaluation for the Science Fair 2009, and he qualified for the next round. He continues to work on it, refining, repairing, improving, and correcting. He also attended Legopalooza at the Moorehead Planetarium at UNC, on the Scouting front he is building his final entry into the Pinewood Derby and getting ready to receive his Arrow of Light and crossover to Boy Scouts.
That’s the news for the day; pictures at 11; and right after that another exciting episode of ‘The Lobby Sherrif’
Monday, February 2, 2009
Wednesday, January 21, 2009
The other side of the Snowman
The anticipation of today was offset by a snow storm of biblical proportions, by North Carolina standards, 4 inches. Today we are all sitting in our home away from home, the ‘code’ room of the Pediatric Hematology/Oncology clinic at UNC, but yesterday was a different story. School was on a 2 hour delay in anticipation of snow, so there was hope. Hope is a powerful condition, it carries the hint of success, the taste of victory, the whiff of wonderful; and a child and his sister prayed mighty prayers that school would be cancelled. 6 am school was cancelled, 2 inches of thick wet snow mixed with winds gusting to 25 mph had made the roads so hazardous that there were over 150 accidents in our area.
There is something bordering on a sense of high sinful pleasure when one cuddles up in a warm bed, comforter wrapped around you like an oversized Mexican burrito. Waking is a slow pleasure of gentle rising until one faces a window and sees the fluffy white stuff being wind swept into 6 inch drifts. Two possible emotional responses might be reasonably anticipated: 1. Who’s gonna shovel this @#$%#*! 2. Oh! That should be fun to play in. In the Piedmont of NC there is a ‘liaise faire’ attitude about snow it is born of two realities: A. Someday it will snow. B. We have neither the equipment, experience nor inclination to do anything about it. (It’ll all melt away within a day anyway) The other contributing factor to any lack of action was of course the inauguration of the 44th President of the USA.
Having been absent from this type of weather for three years, one might suppose a degree of wonder about the white stuff. What was expressed, gasps of surprise, slack jawed awe, and a real joy at the apparent miracle that God would not only bestow an additional day of rest (from school) but there was gonna be enough of the stuff to have some serious fun.
The wind whipped additional accumulations into place over the remainder of the morning, and in a post inaugural address revelation, the wind died and the sun came out, Wow! In a moment of pure childhood joy
Evan ran barefoot into Snoopy’s Magic Food Room (Rather than feeding the hound from the table, we have established that table scraps may only be fed to said mutt in the screened porch off the back of house. As proof of Pavlov’s work, Snoopy stands eagerly in tail wagging fashion by the back door at every meal waiting for access to his Magic Food Room)
The errant run to freedom was met with 2 realizations: Snow is still cold stuff, even in NC; and that Evan is (In Russian accented English) Strong like Bull and Smart like Book! No, not book smart, smart like book! 5 minutes later, dressed with shoes, sweater, hat and shoes, our intrepid cold weather explorer set foot into the frozen tundra of the central highlands of North Carolina. 5 minutes later and dad was shoveling the driveway in NC shoveling attire, and Sissy was modeling the latest skiwear for the NC State Ski Team.
The peals of gleeful laughter echoing from the frozen edifices of the neighborhood only
paled in comparison to the ear to ear smiles and rosy cheeks of the children having snowball fights, sledding, and making snow cream. When it only happens in a blue moon, the need to experience it all is overwhelming.
Snow Cream is a NC specialty for snow storms; take a 2:1 ratio of cream to sugar, add 1tsp of vanilla and mix in fresh snow till it develops a solid consistency. The microscopic nature of the snow makes the desert absolutely amazing. Thanks to our NC neighbors who introduced us to this treat. For never getting snow, they sure have the best recipe.
As the day ended, as you can see the sunset was spectacular. And the mariners saying came to mind, “Red sky at night, sailor’s delight; Red sky in the morning, sailor’s warning.”
Today began with the potentially treacherous drive over icy roads to the hospital. We left early and traveling mercies saw us arrive with the perfect time to spare. As pre-medications (changes were made to protect the innocent) were lined up like students in line for lunch we all (Doctor, Nurses, Rec therapist, parents and Evan) waited in almost breathless anticipation of what would happen next. Even when you know its coming, the interactions are difficult to address. The sense of muscle discomfort knows no remedy, no drug can make it go away, no relaxation technique will shed the burden, no tissue is big enough for the tears that fall. Only a drug induced sedation will calm the nerves of all involved. The vivid nightmares in coming nights will be talked through and cried into the shoulders of mom and dad. This we can all deal with, not the leg ‘cramps’ that know no end and have no respite.
As always, your prayers are deemed essential and the warmth of your thoughts a comforting blanket into which we might curl up into while resting by the warmth of a fire stoked in the hearth of our family’s love.
There is something bordering on a sense of high sinful pleasure when one cuddles up in a warm bed, comforter wrapped around you like an oversized Mexican burrito. Waking is a slow pleasure of gentle rising until one faces a window and sees the fluffy white stuff being wind swept into 6 inch drifts. Two possible emotional responses might be reasonably anticipated: 1. Who’s gonna shovel this @#$%#*! 2. Oh! That should be fun to play in. In the Piedmont of NC there is a ‘liaise faire’ attitude about snow it is born of two realities: A. Someday it will snow. B. We have neither the equipment, experience nor inclination to do anything about it. (It’ll all melt away within a day anyway) The other contributing factor to any lack of action was of course the inauguration of the 44th President of the USA.
Having been absent from this type of weather for three years, one might suppose a degree of wonder about the white stuff. What was expressed, gasps of surprise, slack jawed awe, and a real joy at the apparent miracle that God would not only bestow an additional day of rest (from school) but there was gonna be enough of the stuff to have some serious fun.
The wind whipped additional accumulations into place over the remainder of the morning, and in a post inaugural address revelation, the wind died and the sun came out, Wow! In a moment of pure childhood joy
Evan ran barefoot into Snoopy’s Magic Food Room (Rather than feeding the hound from the table, we have established that table scraps may only be fed to said mutt in the screened porch off the back of house. As proof of Pavlov’s work, Snoopy stands eagerly in tail wagging fashion by the back door at every meal waiting for access to his Magic Food Room)
The errant run to freedom was met with 2 realizations: Snow is still cold stuff, even in NC; and that Evan is (In Russian accented English) Strong like Bull and Smart like Book! No, not book smart, smart like book! 5 minutes later, dressed with shoes, sweater, hat and shoes, our intrepid cold weather explorer set foot into the frozen tundra of the central highlands of North Carolina. 5 minutes later and dad was shoveling the driveway in NC shoveling attire, and Sissy was modeling the latest skiwear for the NC State Ski Team.The peals of gleeful laughter echoing from the frozen edifices of the neighborhood only
paled in comparison to the ear to ear smiles and rosy cheeks of the children having snowball fights, sledding, and making snow cream. When it only happens in a blue moon, the need to experience it all is overwhelming.Snow Cream is a NC specialty for snow storms; take a 2:1 ratio of cream to sugar, add 1tsp of vanilla and mix in fresh snow till it develops a solid consistency. The microscopic nature of the snow makes the desert absolutely amazing. Thanks to our NC neighbors who introduced us to this treat. For never getting snow, they sure have the best recipe.
As the day ended, as you can see the sunset was spectacular. And the mariners saying came to mind, “Red sky at night, sailor’s delight; Red sky in the morning, sailor’s warning.”
Today began with the potentially treacherous drive over icy roads to the hospital. We left early and traveling mercies saw us arrive with the perfect time to spare. As pre-medications (changes were made to protect the innocent) were lined up like students in line for lunch we all (Doctor, Nurses, Rec therapist, parents and Evan) waited in almost breathless anticipation of what would happen next. Even when you know its coming, the interactions are difficult to address. The sense of muscle discomfort knows no remedy, no drug can make it go away, no relaxation technique will shed the burden, no tissue is big enough for the tears that fall. Only a drug induced sedation will calm the nerves of all involved. The vivid nightmares in coming nights will be talked through and cried into the shoulders of mom and dad. This we can all deal with, not the leg ‘cramps’ that know no end and have no respite.
As always, your prayers are deemed essential and the warmth of your thoughts a comforting blanket into which we might curl up into while resting by the warmth of a fire stoked in the hearth of our family’s love.
Saturday, January 17, 2009
Pixie Dust, Fairy Magic, and Plastic Blocks
For pictures please cut and paste to your internet browser- http://www.facebook.com/album.php?aid=6686&l=27094&id=1616041978
I would tell you a fairy tale of a boy from a land far away. Once upon a time when he was but a baby his Granny placed a small present in his stocking for Christmas. Inside that colorful paper was a colorful little box, and inside the little box there was a package of small plastic pieces in the brightest reds, yellows, blues and whites. Some graphics oriented instructions and a little effort had seen piece placed on piece and imagination blossomed into both a broad smile and a deep sense of satisfying peace. From that point on that little boy never met a LEGO he didn’t like or want to build, and in the safety of construction he found both a joy of purpose and achievement, but more importantly an escape from the pressures of every day. Pressures no child should be burdened with; pressures no adult would wish upon their mortal enemy; pressures from which there is no respite till a winner is declared. While fighting this battle his only wish, his only focus was to get to the place where he could build, plan and retreat with Legos all day long. That place was Legoland. There are only 4 such places of plastic wonder in the world: Windsor, England; Billund, Denmark; Gunzburg, Germany; and San Diego, CA. But how would he ever get there? Time was tenuous. Physical health was always a potential problem. It was over 3000 miles away; across a continent, past forests, through rivers and deserts, not to mention over snow capped mountains. All this stood in the way. It looked like it may never happen, or worse, that it might happen but only as a hollow victory as the night closed in on our young hero. Someone once said, “Pray as if your life depended on it, and work as if your life depended on it.” So he prayed and he prayed, and his parents prayed and prayed, and his sister prayed and prayed. And he worked on building his LEGOs, and his parents worked on connecting people and ideas together, and his sister worked on annoying him as much as he deserved.
As this is a fairy tale this seems like a good time to put a fairy in the story.
8 months after planting the magic seed, a wish granting fairy called Vanessa from the place called Kid’s Wish Network. 8 months is a long time for a 9 year old. 10% of life has passed you by, surely the wish, the dream, the very idea would have changed. Perhaps it would be to see an episode of Hannah Montana or a trip to Disney or the mountains to ski. Not so when your dream is held so closely to the heart, not so when the very fibers of your being are dragging your eyes toward California at every free moment. And I suppose in a twist on the Fairy tale, Vanessa called on 7 of her magical friends to make this wish change from a dream to a goal by setting a deadline on that dream. And those of you who know will understand when I say that the fairy did the work, but God provided the love and the providence to take that goal and make it a reality. 7 days before the planned wish trip, the little boy was just home from an unplanned 2 day stay in the hospital ICU from a medication reaction, then his blood counts were just on the high side of the border for travel (really low for the average young man – but this boy is nicknamed “RubberBoy” for his resilience and bounce back ability.
And this is how it was done and how those 7 magical friends helped make that little boy the happiest person on earth, if only for a moment. It was a moment that will be lived in and out of every day from that moment on.
The first magical friends were the pilots, attendants, gate personnel and baggage handlers of American Airlines. The finest professionals made everything as easy as possible. A pillow, a blanket, smooth take-offs and landings, the prompt arrival of bags, all this and so much more. I suppose we expect them to do all these things and more each day, but for the boy in the middle of living his dream, every courtesy was afforded. No funny looks at masks or missing hair, just smiles and lots of help. This magical team took him to his dream and escorted him home so that even as sad as he was to leave, they left him smiling and inquiring of his next trip to the land of his dreams.
As American Airlines delivered the boy and his family into San Diego, the torch of support was handed to Hertz as they provided the gleaming Maroon Steed of Travel to the boy’s family. The trusty transport was a minivan big enough to take not only the boy and his bag; but the rest of the family, luggage and he swore he heard his father question the need for an Iron and Kitchen sink, but that could have been the Pacific Ocean lapping against the shore of the harbor wall or was it Mission Bay. For 5 days this valiant mount carried the boy from one end of San Diego County to the other, back again and across the county as well.
As the boy was driven up I-5 towards and into Carlsbad, he came face to face with the place he would call home for 5 nights. The luxurious La Costa Resort and Spa was only exceeded by the grace, courtesy and service provided by the staff (A warm glass of milk and three of the biggest cookies on arrival). It was only here that the boy grew mildly distracted from his quest, he wasn’t sure if it was the early morning dip in the steam shrouded heated pools, or the 3 x 50 inch plasma TV’s or the incredibly comfortable King size bed. His mind was refocused as he became hungry. His hunger was driven by a deep seated drive to accomplish his lifelong dream, and hunger from not eating because he was playing so hard.
Every Fairy Tale should have a twist or two or three. For the little boy the twists came in seeing family and friends while in the area. Time was set aside to meet his mom’s Aunt Myra, Uncle Dave and cousin Dave and his wife, Jocelyn, on the first night. The second night brought a reunion with Nana and Poppa who had travelled from Asheville, NC to San Diego to visit friends in a most serendipitous meeting. Then on the third morning was a breakfast with his “Big” brother’s sister, Sarah. Like a great meal, each meeting enhanced the flavors and experiences of the whole glorious trip. Wow!
It would be easy to suppose that when you live in the land of childhood dreams for any length of time familiarity might breed contempt, or the weather was so unseasonably cold that the staff was frozen, or most likely the staff just paled in comparison to the 41 brightest of bright shiny ABS plastic bricks. None of that mattered. There was a 38 step action plan/agenda to ensure fulfillment of every aspect of the little boy’s dream. As sure as one might be that the Pope is Catholic, one could be reasonably sure that nothing could top the first day in Legoland, but you might be wrong.
After the wish was completed on Day 1, what was left to do? Get some marvelous pizza at a magical friend’s place, and so the little boy, now sated on LEGO for the moment almost fell asleep in his pizza at PRIMO’s in Carlsbad. He was waited on like a king, and the food was delicious for those that remember it. 3 chefs and 3 wait staff kept things moving along, and the boy’s father caught the middle of the BCS National Championship game on the TV in the corner of the room.
Day 2 saw the completion of the agenda, and as things were winding down in Fun Town the little boy had the fires of his imagination stoked and fueled as he went through the LEGO Factory Tour. After this little stroll through manufacturing the little boy settled into Pick-A-Brick. Name a color, they have it. Name a piece, they have it. And since they were selling them by the pound, why not get a pound or two. While this seeking and sorting was going on, a little bird had a little word with a very special friend. Renate, a lifelong LEGO fan and long time employee from Germany, heard that time might be short for the little boy. Renate then exceeded all possible wishes and dreams; she took the little boy back behind the scenes. She showed him how the LEGO’s are made, then she let the little boy make LEGO’s, then sort the bad ones out. Then she helped him make original LEGO statues from real LEGO ABS plastic. She put the real human face, the embodiment of love, excitement and imagination back into the plastic. All of a sudden the dream that had been, became the dream that was reality and laid out a new dream for the future. Happiness and Peace found in connecting cold pieces of colored plastic was now joined with the warmth and huggable Love of a friend who made the dream-into-reality become the reality-into dream, again.
Dinner after the second day at Legoland was hosted by the fifth of his magical friends, the Rockin’ staff of Ruby’s Diner a 50’s themed burger joint. The burgers were huge, the shakes were bigger, and the clown animals and paper boxcars made the evening complete. A evening constitutional through the mall, and a handpicked orange off the trees at LaCosta allowed the day to wind down slowly and for one set of emotions (Joy, glee, WOW!) to be switched for another (Sadness, gloom, despair) as it felt that all reason for living had been sucked out of the little boy as he had no more dreams to seek out.
Seaworld was our 6th magical friend, but even the splash of 8000lb Shamu the Killer Whale could hardly bring a smile to the lips of the exhausted and leg weary young man (little boys have not had to face the fading of their dreams into the sunset of by gone days) But as the sun soaked in, and the Santa Ana winds began to pick up, there was lunch. Breakfast is one thing, but a lunch buffet will really add some energy to your day, especially when you’re eating less than 10 feet from where Shamu and family are also eating. Add in a little feeding of Sea Lions and Dolphins and you have an exciting day. Walking under sharks in a glass tunnel will also provide a certain exhilarating bounce to your step. Just what the doctor ordered to take the edge of a slightly tired and down day before heading back to home.
The young man’s last dinner while on his trip was hosted by his magical friends at Chili’s in San Diego. The food was great, and the service better. It was just the right kind of quiet end to a quiet day after the very emotionally charged three preceding days. If he hadn’t needed to get up at 3:45 the next morning, the party would have gone on for hours.
Dark and early (Bright is not appropriate at 3:45 am) the next morning the young man said good bye to his friends first at La Costa, then dropping his trusty steed at Hertz, and then began the steady journey with his first magical friend become his last as he boarded the American Airlines flight from San Diego back to Raleigh.
He may have left a little boy with his eyes full of wishes and dreams, but he returned fulfilled as a young man. Now his eyes are filled with possibilities and goals; always he looks forward with hope. Now to add to his hope is a taste of dreams come real that will fuel his drive forward, thanks to a good fairy named Vanessa from the land of Kid’s Wish Network.
I would tell you a fairy tale of a boy from a land far away. Once upon a time when he was but a baby his Granny placed a small present in his stocking for Christmas. Inside that colorful paper was a colorful little box, and inside the little box there was a package of small plastic pieces in the brightest reds, yellows, blues and whites. Some graphics oriented instructions and a little effort had seen piece placed on piece and imagination blossomed into both a broad smile and a deep sense of satisfying peace. From that point on that little boy never met a LEGO he didn’t like or want to build, and in the safety of construction he found both a joy of purpose and achievement, but more importantly an escape from the pressures of every day. Pressures no child should be burdened with; pressures no adult would wish upon their mortal enemy; pressures from which there is no respite till a winner is declared. While fighting this battle his only wish, his only focus was to get to the place where he could build, plan and retreat with Legos all day long. That place was Legoland. There are only 4 such places of plastic wonder in the world: Windsor, England; Billund, Denmark; Gunzburg, Germany; and San Diego, CA. But how would he ever get there? Time was tenuous. Physical health was always a potential problem. It was over 3000 miles away; across a continent, past forests, through rivers and deserts, not to mention over snow capped mountains. All this stood in the way. It looked like it may never happen, or worse, that it might happen but only as a hollow victory as the night closed in on our young hero. Someone once said, “Pray as if your life depended on it, and work as if your life depended on it.” So he prayed and he prayed, and his parents prayed and prayed, and his sister prayed and prayed. And he worked on building his LEGOs, and his parents worked on connecting people and ideas together, and his sister worked on annoying him as much as he deserved.
As this is a fairy tale this seems like a good time to put a fairy in the story.
8 months after planting the magic seed, a wish granting fairy called Vanessa from the place called Kid’s Wish Network. 8 months is a long time for a 9 year old. 10% of life has passed you by, surely the wish, the dream, the very idea would have changed. Perhaps it would be to see an episode of Hannah Montana or a trip to Disney or the mountains to ski. Not so when your dream is held so closely to the heart, not so when the very fibers of your being are dragging your eyes toward California at every free moment. And I suppose in a twist on the Fairy tale, Vanessa called on 7 of her magical friends to make this wish change from a dream to a goal by setting a deadline on that dream. And those of you who know will understand when I say that the fairy did the work, but God provided the love and the providence to take that goal and make it a reality. 7 days before the planned wish trip, the little boy was just home from an unplanned 2 day stay in the hospital ICU from a medication reaction, then his blood counts were just on the high side of the border for travel (really low for the average young man – but this boy is nicknamed “RubberBoy” for his resilience and bounce back ability.
And this is how it was done and how those 7 magical friends helped make that little boy the happiest person on earth, if only for a moment. It was a moment that will be lived in and out of every day from that moment on.
The first magical friends were the pilots, attendants, gate personnel and baggage handlers of American Airlines. The finest professionals made everything as easy as possible. A pillow, a blanket, smooth take-offs and landings, the prompt arrival of bags, all this and so much more. I suppose we expect them to do all these things and more each day, but for the boy in the middle of living his dream, every courtesy was afforded. No funny looks at masks or missing hair, just smiles and lots of help. This magical team took him to his dream and escorted him home so that even as sad as he was to leave, they left him smiling and inquiring of his next trip to the land of his dreams.
As American Airlines delivered the boy and his family into San Diego, the torch of support was handed to Hertz as they provided the gleaming Maroon Steed of Travel to the boy’s family. The trusty transport was a minivan big enough to take not only the boy and his bag; but the rest of the family, luggage and he swore he heard his father question the need for an Iron and Kitchen sink, but that could have been the Pacific Ocean lapping against the shore of the harbor wall or was it Mission Bay. For 5 days this valiant mount carried the boy from one end of San Diego County to the other, back again and across the county as well.
As the boy was driven up I-5 towards and into Carlsbad, he came face to face with the place he would call home for 5 nights. The luxurious La Costa Resort and Spa was only exceeded by the grace, courtesy and service provided by the staff (A warm glass of milk and three of the biggest cookies on arrival). It was only here that the boy grew mildly distracted from his quest, he wasn’t sure if it was the early morning dip in the steam shrouded heated pools, or the 3 x 50 inch plasma TV’s or the incredibly comfortable King size bed. His mind was refocused as he became hungry. His hunger was driven by a deep seated drive to accomplish his lifelong dream, and hunger from not eating because he was playing so hard.
Every Fairy Tale should have a twist or two or three. For the little boy the twists came in seeing family and friends while in the area. Time was set aside to meet his mom’s Aunt Myra, Uncle Dave and cousin Dave and his wife, Jocelyn, on the first night. The second night brought a reunion with Nana and Poppa who had travelled from Asheville, NC to San Diego to visit friends in a most serendipitous meeting. Then on the third morning was a breakfast with his “Big” brother’s sister, Sarah. Like a great meal, each meeting enhanced the flavors and experiences of the whole glorious trip. Wow!
It would be easy to suppose that when you live in the land of childhood dreams for any length of time familiarity might breed contempt, or the weather was so unseasonably cold that the staff was frozen, or most likely the staff just paled in comparison to the 41 brightest of bright shiny ABS plastic bricks. None of that mattered. There was a 38 step action plan/agenda to ensure fulfillment of every aspect of the little boy’s dream. As sure as one might be that the Pope is Catholic, one could be reasonably sure that nothing could top the first day in Legoland, but you might be wrong.
After the wish was completed on Day 1, what was left to do? Get some marvelous pizza at a magical friend’s place, and so the little boy, now sated on LEGO for the moment almost fell asleep in his pizza at PRIMO’s in Carlsbad. He was waited on like a king, and the food was delicious for those that remember it. 3 chefs and 3 wait staff kept things moving along, and the boy’s father caught the middle of the BCS National Championship game on the TV in the corner of the room.
Day 2 saw the completion of the agenda, and as things were winding down in Fun Town the little boy had the fires of his imagination stoked and fueled as he went through the LEGO Factory Tour. After this little stroll through manufacturing the little boy settled into Pick-A-Brick. Name a color, they have it. Name a piece, they have it. And since they were selling them by the pound, why not get a pound or two. While this seeking and sorting was going on, a little bird had a little word with a very special friend. Renate, a lifelong LEGO fan and long time employee from Germany, heard that time might be short for the little boy. Renate then exceeded all possible wishes and dreams; she took the little boy back behind the scenes. She showed him how the LEGO’s are made, then she let the little boy make LEGO’s, then sort the bad ones out. Then she helped him make original LEGO statues from real LEGO ABS plastic. She put the real human face, the embodiment of love, excitement and imagination back into the plastic. All of a sudden the dream that had been, became the dream that was reality and laid out a new dream for the future. Happiness and Peace found in connecting cold pieces of colored plastic was now joined with the warmth and huggable Love of a friend who made the dream-into-reality become the reality-into dream, again.
Dinner after the second day at Legoland was hosted by the fifth of his magical friends, the Rockin’ staff of Ruby’s Diner a 50’s themed burger joint. The burgers were huge, the shakes were bigger, and the clown animals and paper boxcars made the evening complete. A evening constitutional through the mall, and a handpicked orange off the trees at LaCosta allowed the day to wind down slowly and for one set of emotions (Joy, glee, WOW!) to be switched for another (Sadness, gloom, despair) as it felt that all reason for living had been sucked out of the little boy as he had no more dreams to seek out.
Seaworld was our 6th magical friend, but even the splash of 8000lb Shamu the Killer Whale could hardly bring a smile to the lips of the exhausted and leg weary young man (little boys have not had to face the fading of their dreams into the sunset of by gone days) But as the sun soaked in, and the Santa Ana winds began to pick up, there was lunch. Breakfast is one thing, but a lunch buffet will really add some energy to your day, especially when you’re eating less than 10 feet from where Shamu and family are also eating. Add in a little feeding of Sea Lions and Dolphins and you have an exciting day. Walking under sharks in a glass tunnel will also provide a certain exhilarating bounce to your step. Just what the doctor ordered to take the edge of a slightly tired and down day before heading back to home.
The young man’s last dinner while on his trip was hosted by his magical friends at Chili’s in San Diego. The food was great, and the service better. It was just the right kind of quiet end to a quiet day after the very emotionally charged three preceding days. If he hadn’t needed to get up at 3:45 the next morning, the party would have gone on for hours.
Dark and early (Bright is not appropriate at 3:45 am) the next morning the young man said good bye to his friends first at La Costa, then dropping his trusty steed at Hertz, and then began the steady journey with his first magical friend become his last as he boarded the American Airlines flight from San Diego back to Raleigh.
He may have left a little boy with his eyes full of wishes and dreams, but he returned fulfilled as a young man. Now his eyes are filled with possibilities and goals; always he looks forward with hope. Now to add to his hope is a taste of dreams come real that will fuel his drive forward, thanks to a good fairy named Vanessa from the land of Kid’s Wish Network.
Tuesday, January 6, 2009
Legoland or Bust!
Like an adult in Polar Express, I am having a difficult time comprehending the attraction of a theme park built around plastic building blocks. Ah! If only the bell would ring again for me. But this isn’t about me, it is all about Evan and his wish. Monday we received the go ahead (Evan’s blood work was okayed) and thanks to Kids Wish Network and their sponsors we will be leaving for San Diego in the morning. We promise to get lots of pictures, and Evan has generated a 38 point agenda for our time in the park. 
Your prayers have us floating on a sea of blessings, and the strength and peace you send out are received like water on the parched summer grass of the Piedmont of North Carolina. Without this spiritual sustenance we would be unable to take this trip. Thank you, each of you is a blessing to us from God.
Your prayers have us floating on a sea of blessings, and the strength and peace you send out are received like water on the parched summer grass of the Piedmont of North Carolina. Without this spiritual sustenance we would be unable to take this trip. Thank you, each of you is a blessing to us from God.
Wednesday, December 31, 2008
Home at Last!
Happy New Year! I am so sorry to have left everyone hanging in suspense over what happened in the last 36 hours, especially since we have been at home for the past 24. Those of you shoot vacation videos will understand the dilemma: Should I take the shot for others to see what we’ve done, or should I live the moment and share the memory. There is no real option for us, and unfortunately our e-mail server has been down and so the e-mail synopsis has not been as easily distributed. (Lizy puts out a short email with a play-by-play while it is my job to add the color)
An hour after the last post, chemotherapy was restarted, as expected the annoying itchy rash returned, but Evan had been sedated and slept through the rash without any anxiety or itching. And 30 minutes later, the rash resolved itself. Chemo was kept running at 10 ml/hr through the night without incident. Evan woke on Tuesday morning wondering why he was in the hospital and when he could go home, ate a good breakfast and tried to patiently wait for the infusion to be complete. Starting at 9:00 am the dosing was increased 10 ml/hr until 2 pm when it was moved to 60 ml, and then to 100 ml/hr for the last hour of medicine 1.
In preparation for medicine 2 Evan began to develop hives, itching and anxiety again, at the same time as a pre-med was being administered. This was the same medicine which had been hung in premed the other 5 attempts at starting chemo, and the one med which had not been running during the day. Ah Hah! As we have again experienced the same reaction at home this evening when he took the medicine for some nausea onset, we believe that this will lead to a positive change moving forward. The second medication went in without trouble as Evan had been given an ant anxiety medication that sedated him for the evening which only became problematic when we had to move him from car to house when we got home. Today has been quiet and relaxed, a nice surprise of opening up two boxes of games and toys from Kids Wish Network.
We hope to be going to San Diego next week (Assuming blood counts are in line) to visit Legoland thanks to Kids Wish Network. It will mark a great way to start 2009.
A look back on this year is not easy, but upon closer inspection we can find some real nuggets of gold. The type of gold that you can’t buy or sell. The crafting of this gold that takes hours, days and weeks to work into wonders of strength and beauty. This gold is the color of friendships (far and wide) and family (near and distant). This gold is love, its source is Our Father in heaven. It is not all that He is; but it is His medium of choice for us to work in. And His example to model after is stunning, beautiful and timeless. And more important is the fact that all we have to do with this material is to acknowledge its source. His pleasure is in seeing us try, and like a parent watching a child finger paint He enjoys the look on our faces when we smile at doing something ‘pretty’ on our own..
This year we have received the gold of love in abundance, and we hope that through this writing and Evan‘s story; that you might take some of our gold and share it with those around you. And now we wish you many blessings for the coming 12 months, and we’ll be sure to post pictures of LEGO’s in abundance upon our return.
An hour after the last post, chemotherapy was restarted, as expected the annoying itchy rash returned, but Evan had been sedated and slept through the rash without any anxiety or itching. And 30 minutes later, the rash resolved itself. Chemo was kept running at 10 ml/hr through the night without incident. Evan woke on Tuesday morning wondering why he was in the hospital and when he could go home, ate a good breakfast and tried to patiently wait for the infusion to be complete. Starting at 9:00 am the dosing was increased 10 ml/hr until 2 pm when it was moved to 60 ml, and then to 100 ml/hr for the last hour of medicine 1.
In preparation for medicine 2 Evan began to develop hives, itching and anxiety again, at the same time as a pre-med was being administered. This was the same medicine which had been hung in premed the other 5 attempts at starting chemo, and the one med which had not been running during the day. Ah Hah! As we have again experienced the same reaction at home this evening when he took the medicine for some nausea onset, we believe that this will lead to a positive change moving forward. The second medication went in without trouble as Evan had been given an ant anxiety medication that sedated him for the evening which only became problematic when we had to move him from car to house when we got home. Today has been quiet and relaxed, a nice surprise of opening up two boxes of games and toys from Kids Wish Network.
We hope to be going to San Diego next week (Assuming blood counts are in line) to visit Legoland thanks to Kids Wish Network. It will mark a great way to start 2009.
A look back on this year is not easy, but upon closer inspection we can find some real nuggets of gold. The type of gold that you can’t buy or sell. The crafting of this gold that takes hours, days and weeks to work into wonders of strength and beauty. This gold is the color of friendships (far and wide) and family (near and distant). This gold is love, its source is Our Father in heaven. It is not all that He is; but it is His medium of choice for us to work in. And His example to model after is stunning, beautiful and timeless. And more important is the fact that all we have to do with this material is to acknowledge its source. His pleasure is in seeing us try, and like a parent watching a child finger paint He enjoys the look on our faces when we smile at doing something ‘pretty’ on our own..
This year we have received the gold of love in abundance, and we hope that through this writing and Evan‘s story; that you might take some of our gold and share it with those around you. And now we wish you many blessings for the coming 12 months, and we’ll be sure to post pictures of LEGO’s in abundance upon our return.
Monday, December 29, 2008
A Long Day's Night
Its 9:18 pm, Monday December 29, 2008 and as I write this I am sitting at Evan’s bedside in the Pediatric Intensive Care Unit (PICU) at UNC Hospital. In the past 10 minutes the night nurse and her assistant prepared the room for an overnight code. While this is just precautionary, it indicates in no uncertain terms the fine line between life and death that we are walking when it comes to Evan’s health. Today has been long, challenging and is not yet over.
This is the other shoe dropping. For the past 24 days Evan has lived an almost idyllic first round of chemotherapy. There were some initial side effects; mild nausea and some minor aches and pains to name them. Otherwise he made it to school 9 of 10 days, got his homework done, made it to his Pack Meeting, celebrated Christmas at home, and built LEGOs everyday thanks to some very generous friends and Santa. To top off the last day before his next course of chemotherapy he finished building the computer for his science fair project.
His blood counts dropped as expected and then began their recovery. The only downer was his hair falling out on Christmas Eve. Even that challenge had been lessened by pre-cutting his hair with an electric trimmer, and his friends (Jack, William, and Andy) shaving their heads, and his dad, Den Leader, and Assistant Pack Leader also providing follicle support.
And then there has been today. It started out relatively normal; a little sluggish out of bed, breakfast on the fly, mom and dad slugging coffee on the way to Chapel Hill. We were greeted with good news, while a tape measure is not an overly reliable measuring tool for medical purposes, the tumor has apparently responded well to the first treatment of the chemotherapy protocol. Evan took his premeds like a champ, and his blood values came back as strongly as the first day he had chemo. Then things started to happen out of the ordinary. An unfortunate initial reaction to a premed - vomiting. Then there was a 2nd reaction to his first start of chemo (Evan’s protocol calls for one drug of 572 ml to be administered over 3 hours, and a second over 1 hour. The first drug has been known to cause anaphylactic shock as an immediate side effect and so there is considerable premedication) This second reaction involved hives, vomiting and a very fast heart beat. After stopping infusion and restarting at a lower rate there were 2 additional reactions and the determination that the dosing would have to be much lower slower and that Evan would need to spend the night.
Since that determination, the chemical cocktail has been enhanced with a variety of anti-nauseals, anti-histamines, H2 blockers and anti-anxieties in an effort to start the medications in a manner that will not create a reaction. At the planned rate of infusion for attempt number 5 (it might be 6, I’ve lost count) it will be another 40 hours before the first medication is complete, that is before we get to medication #2. That would put discharge at 2 pm on New Years Eve. Happy New Year!
Thank you for the ongoing blessings of your prayers - Evan and family.
This is the other shoe dropping. For the past 24 days Evan has lived an almost idyllic first round of chemotherapy. There were some initial side effects; mild nausea and some minor aches and pains to name them. Otherwise he made it to school 9 of 10 days, got his homework done, made it to his Pack Meeting, celebrated Christmas at home, and built LEGOs everyday thanks to some very generous friends and Santa. To top off the last day before his next course of chemotherapy he finished building the computer for his science fair project.
His blood counts dropped as expected and then began their recovery. The only downer was his hair falling out on Christmas Eve. Even that challenge had been lessened by pre-cutting his hair with an electric trimmer, and his friends (Jack, William, and Andy) shaving their heads, and his dad, Den Leader, and Assistant Pack Leader also providing follicle support.And then there has been today. It started out relatively normal; a little sluggish out of bed, breakfast on the fly, mom and dad slugging coffee on the way to Chapel Hill. We were greeted with good news, while a tape measure is not an overly reliable measuring tool for medical purposes, the tumor has apparently responded well to the first treatment of the chemotherapy protocol. Evan took his premeds like a champ, and his blood values came back as strongly as the first day he had chemo. Then things started to happen out of the ordinary. An unfortunate initial reaction to a premed - vomiting. Then there was a 2nd reaction to his first start of chemo (Evan’s protocol calls for one drug of 572 ml to be administered over 3 hours, and a second over 1 hour. The first drug has been known to cause anaphylactic shock as an immediate side effect and so there is considerable premedication) This second reaction involved hives, vomiting and a very fast heart beat. After stopping infusion and restarting at a lower rate there were 2 additional reactions and the determination that the dosing would have to be much lower slower and that Evan would need to spend the night.
Since that determination, the chemical cocktail has been enhanced with a variety of anti-nauseals, anti-histamines, H2 blockers and anti-anxieties in an effort to start the medications in a manner that will not create a reaction. At the planned rate of infusion for attempt number 5 (it might be 6, I’ve lost count) it will be another 40 hours before the first medication is complete, that is before we get to medication #2. That would put discharge at 2 pm on New Years Eve. Happy New Year!
Thank you for the ongoing blessings of your prayers - Evan and family.
Monday, December 8, 2008
Hey, is the car cold or is it just me?
Over the past year this blog has chronicled the life of Evan Coleman as he has undertaken a battle with cancer. He is a bright (full of life and intelligent) young man with more courage in his little body than seems possible for his size. What has transpired over the past week and is ongoing as this is written might be termed the ’Transition’ from investigation to action. While surgeries before have had the stated objective of ending this war, no attempt has encompassed such a broad and sweeping attack, nor has his life been in more jeopardy than it is over the next couple of weeks. This entry has the potential to get away from a simple and clear explanation; and instead end up as a tiring emotional discourse. This unfortunately might best reflect the emotional and physical state of the Coleman home as it exists today. But instead we have assembled multiple perspectives to share clinical facts and raw emotions from both Evan and his parents.
THE CLINICAL:
On Monday 12-1-08, a one hour operation resulted in a port-a-cath central line being placed for easy chemotherapy administration and blood draws. The operation was successful and without complication or issue. Chemotherapy had been slated to begin Monday 12-1, then moved to Wednesday 12-3 and finally to Friday 12-5. The delays were directly related to making sure Evan’s care came first. The chemo cocktail is a rare combination in pediatrics and requires close attention, considerable premedication and access to a ‘crash’ cart (In ~20-30% of patients, there is an anaphylactic reaction requiring immediate emergency medical attention, the crash cart has all the necessary supplies for an emergency resuscitation.) For all the preparation the most anxiety came from the premedication. The high doses of premedication to avoid the worst side effects of the chemotherapy resulted in an anxiety driven case of cramping sensations. This was resolved with Ativan.
4 hours of Taxol and 1 hour of Carboplatin and Evan was on his way home. Heavy doses of anti-nausea medications for 24 hours, coupled with rest and relaxation have Evan back to a relative normal for today (Sunday). Next round of Chemo set for 12-29-08 based on blood counts to be taken 12-15 and 12-22.
EVAN’S PERSPECTIVE:
12-1-08: Here we go again. Can I not be allowed to sleep? Do I have to get in the car? Has anyone else realized its COLD in the car? Ahhh Sleep. . . . Uh Oh! The hospital . . . Wait . . . Are there any other options? Well at least the nurses are nice, but Mom and Dad seem a little tense. Hey, there are some really cool things in the oper. . . . Dad, is that you? Am I done? And what was this for? What’s chemotherapy? No more IV’s, cool! Mom and Dad need to settle down, aren’t I the patient? Get over yourselves already. Oww! My chest hurts. Ahh. . . Tylenol, Ahh . . . Sleep
12/2/08 Tuesday - Pain, 12/3/08 Wednesday - Discomfort and port awareness, 12/4/08 Thursday - Anxiety, questions and when can they take off this gauze blob on my chest? 12/5/08 Friday. . .
Here we go again. Can I not be allowed to sleep? Do I have to get in the car? Has anyone else realized its COLD in the car? Ahhh Sleep. . . . Uh Oh! The hospital . . . Wait . . . Are there any other options? Holy Toledo. . .they are going to poison me to kill a disease I don’t understand, what the . . . Are they insane? Nice try at the whole ‘comfort’ thing, Dad, Mom . . . Yeah, you guys go and talk to the doctor. . .Hey, nice lady, what are you doing with that port? Why am I on this bed in a separate room? Aren’t all the other kids walking around? Hey, something is not right. . . Something is really not right. . . Mom! . . . Dad! . . . My legs are cramping and I can’t stretch them out . . . Make it go away. . . DON’T TOUCH ME! . . . Now its in my arms and hands. . . MAKE IT GO AWAY . . . IT HURTS . . . DON’T TOUCH ME. . . . Yawn. . . . Sleeeeeeeep. Hey can I get my computer? Can I get some lunch? California Rolls please. When can we go home? The port access, gauze and nasty tegaderm are gone and I’m outta here.
12/6/08 Saturday - nice and easy, a little blasé, light nausea in the evening.
12/7/08 Sunday - nice breakfast, easy and light on the snacks, internet access and Nickelodeon. A shower - hot and sweet, a little nausea but basically back to . . . Hey my webkinz pets are still alive.
THE PARENTS VIEW:
Monday - Thursday 12-1 to 12-4 : When will this be over? Is this what it felt like for Abraham as he took Isaac up on the mountain? I would rather drink hemlock than have to do this. Where do I look for strength? Can you not cut me a little slack? Whoa! Wait up! A year of walking together, why are we taking separate paths now? Is this when personal interest overwhelms the need to serve others? That was ugly. Let us pray. We’ll need all the strength and connection we can get.
Friday 12-5: Off we go. He’s kinda tough to get up this morning, but maybe that’s best, we’re a little tense. Nice quite ride to the hospital and up to the pediatric oncology clinic. Infusion start in the ‘Code’ room.?.? Possible reaction. . . Dexamethasone . . . . Benadryl . . . Zoll Debibrillator . . . Crash Cart . . . ER Gurney . . . ANXIOUS . . . FEAR . . . EVAN WHAT’S WRONG? PRAY . . . PRAY . . . PRAY . . . ATIVAN . . . PRAY . . . PRAY . . . Sleep . . . Peace . . . Tension easing . . . Evan your back . . . California rolls, you bet . . . Let’s go home.
Saturday 12-6: Taking it easy, working together, friends with food and coffee. Managing nausea and fatigue, his and ours. Quiet movie night, Thanking God for our friends who have kept Morgan active and involved in her activities.
Sunday 12-7: Breakfast, writing, decorating the house, answering computer building questions, math homework, language homework, thinking about school. Reality of low blood counts and decreased immune system in 7 days setting in.
Sunday Evening and Monday Morning 12-7 to 12-8: First clear side effects challenges
To Thank you for your thoughts, prayers and love.
THE CLINICAL:
On Monday 12-1-08, a one hour operation resulted in a port-a-cath central line being placed for easy chemotherapy administration and blood draws. The operation was successful and without complication or issue. Chemotherapy had been slated to begin Monday 12-1, then moved to Wednesday 12-3 and finally to Friday 12-5. The delays were directly related to making sure Evan’s care came first. The chemo cocktail is a rare combination in pediatrics and requires close attention, considerable premedication and access to a ‘crash’ cart (In ~20-30% of patients, there is an anaphylactic reaction requiring immediate emergency medical attention, the crash cart has all the necessary supplies for an emergency resuscitation.) For all the preparation the most anxiety came from the premedication. The high doses of premedication to avoid the worst side effects of the chemotherapy resulted in an anxiety driven case of cramping sensations. This was resolved with Ativan.
4 hours of Taxol and 1 hour of Carboplatin and Evan was on his way home. Heavy doses of anti-nausea medications for 24 hours, coupled with rest and relaxation have Evan back to a relative normal for today (Sunday). Next round of Chemo set for 12-29-08 based on blood counts to be taken 12-15 and 12-22.
EVAN’S PERSPECTIVE:
12-1-08: Here we go again. Can I not be allowed to sleep? Do I have to get in the car? Has anyone else realized its COLD in the car? Ahhh Sleep. . . . Uh Oh! The hospital . . . Wait . . . Are there any other options? Well at least the nurses are nice, but Mom and Dad seem a little tense. Hey, there are some really cool things in the oper. . . . Dad, is that you? Am I done? And what was this for? What’s chemotherapy? No more IV’s, cool! Mom and Dad need to settle down, aren’t I the patient? Get over yourselves already. Oww! My chest hurts. Ahh. . . Tylenol, Ahh . . . Sleep
12/2/08 Tuesday - Pain, 12/3/08 Wednesday - Discomfort and port awareness, 12/4/08 Thursday - Anxiety, questions and when can they take off this gauze blob on my chest? 12/5/08 Friday. . .
Here we go again. Can I not be allowed to sleep? Do I have to get in the car? Has anyone else realized its COLD in the car? Ahhh Sleep. . . . Uh Oh! The hospital . . . Wait . . . Are there any other options? Holy Toledo. . .they are going to poison me to kill a disease I don’t understand, what the . . . Are they insane? Nice try at the whole ‘comfort’ thing, Dad, Mom . . . Yeah, you guys go and talk to the doctor. . .Hey, nice lady, what are you doing with that port? Why am I on this bed in a separate room? Aren’t all the other kids walking around? Hey, something is not right. . . Something is really not right. . . Mom! . . . Dad! . . . My legs are cramping and I can’t stretch them out . . . Make it go away. . . DON’T TOUCH ME! . . . Now its in my arms and hands. . . MAKE IT GO AWAY . . . IT HURTS . . . DON’T TOUCH ME. . . . Yawn. . . . Sleeeeeeeep. Hey can I get my computer? Can I get some lunch? California Rolls please. When can we go home? The port access, gauze and nasty tegaderm are gone and I’m outta here.
12/6/08 Saturday - nice and easy, a little blasé, light nausea in the evening.
12/7/08 Sunday - nice breakfast, easy and light on the snacks, internet access and Nickelodeon. A shower - hot and sweet, a little nausea but basically back to . . . Hey my webkinz pets are still alive.
THE PARENTS VIEW:
Monday - Thursday 12-1 to 12-4 : When will this be over? Is this what it felt like for Abraham as he took Isaac up on the mountain? I would rather drink hemlock than have to do this. Where do I look for strength? Can you not cut me a little slack? Whoa! Wait up! A year of walking together, why are we taking separate paths now? Is this when personal interest overwhelms the need to serve others? That was ugly. Let us pray. We’ll need all the strength and connection we can get.
Friday 12-5: Off we go. He’s kinda tough to get up this morning, but maybe that’s best, we’re a little tense. Nice quite ride to the hospital and up to the pediatric oncology clinic. Infusion start in the ‘Code’ room.?.? Possible reaction. . . Dexamethasone . . . . Benadryl . . . Zoll Debibrillator . . . Crash Cart . . . ER Gurney . . . ANXIOUS . . . FEAR . . . EVAN WHAT’S WRONG? PRAY . . . PRAY . . . PRAY . . . ATIVAN . . . PRAY . . . PRAY . . . Sleep . . . Peace . . . Tension easing . . . Evan your back . . . California rolls, you bet . . . Let’s go home.
Saturday 12-6: Taking it easy, working together, friends with food and coffee. Managing nausea and fatigue, his and ours. Quiet movie night, Thanking God for our friends who have kept Morgan active and involved in her activities.
Sunday 12-7: Breakfast, writing, decorating the house, answering computer building questions, math homework, language homework, thinking about school. Reality of low blood counts and decreased immune system in 7 days setting in.
Sunday Evening and Monday Morning 12-7 to 12-8: First clear side effects challenges
To Thank you for your thoughts, prayers and love.
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