Four Years Later...

When Mary posted the first entry to the Game On blog, it seemed like a scary adventure into a new world. Not only were we headed for leading edge medical technology, stem cell transplants, isolation wards, and an apartment in a new city, but we were sharing our experience with a new form of communication.

Ten thousand words and a thousand pictures and four years later, that first day at Duke seems like a strange dream, somewhere between long ago and yesterday. A few moments have faded - and some others are detailed memories that never lose their clarity. We reread the blog to remind us of the journey's high points, and we cry again over the low points.

Today, our family heard from friends and family on Facebook pages, blogs, text messages, emails, phone calls, and probably tweets (but I don't look there, much, I must admit). The messages reflected the messengers - some funny, some with tears, some just checking in. It is great to have such a wonderful support group after four years. Heck, even the medical insurance company took time to remind us of 2006 with a few denial-of-claims in our mailbox today - more old friends checking in.

We gathered on Sunday for our fourth D-Day at the Y, so everyone could be together. We thought we would never "reschedule" June 7th, but the reality of schools and jobs and travels put some practical judgement into meeting at the Y yesterday instead. On a brilliant morning, we enjoyed watching the kids and adults romp on the soccer fields, eat bagels and muffins, and take a few hundred pictures. Another reality is the likelihood that with five grandkids, the odds goes down for everyone being healthy on any one day. Westbrook had a fever and he and Wade stayed home, but Dylan ran an extra five miles to make up for him. The soccer balls and footballs and frolicking kids looked great from the shelter at the Y, which still has Drew's plaque on display. The shelter has a few missing stones on the pillars, evidence that more than one kid has climbed the stonework or hit it with baseballs and soccer shots - Drew would be proud of them all.

For those not keeping up, we have had a good year in Team Llewellyn.

Melissa and Dan again arrived just in time to the hospital to deliver twins in November. Ryan and Addison are healthy, cute, and crying as I write this - cutting teeth, we are told. They have just started sleeping through the night, so Melissa and Dan are relearning to sleep as well. The last six months have been a blur for them - but, wow, those twins are cute. Dylan has been a perfect brother, enjoying preschool and the adventure of helping Mom load the car with three kids, which is exhausting to even think about. Having all five in our house is a fabulous circus of noise, laughter, and plastic baby equipment.

Mary and Wade have shared their kids with Gram and Suppie liberally, and we love it. Being in town has its advantages beyond borrowing hammers and ladders, although Wade has lost several brownie points for selling the truck for no better reason than 40 more MPG in a Prius. Westbrook and Llandis are frequent visitors and constant talkers and generally love life. The big treehouse project of the spring was great fun and used every tool in our joint possession, and every friend and family member helped out.

Ben and Laney have returned for the summer to work in Charlotte and plan for their final year at Ap State. The rugby season was rousing fun this year, as Ben's team made it to the Elite Eight in the college national championship. Jane and I traveled to every game and really enjoyed what may be our final season of our kids' sports - ok, Dylan and Westbrook will start T-ball and microsoccer in the next year, and we will be on the sidelines again soon.

Jane continues her volunteer efforts with soccer, and I continue to wander the planet with IBM. Our blood drive this February was a big success despite the snow storm (ok, a snow storm in Charlotte means it snowed an inch and shut down the city). We had dozens of remote bleeders in Seattle, Richmond, Raleigh, and other cities, and friends again came from hundreds of miles away to donate and see the twins.

We still read about the advances in cancer treatments with hope. We keep up with the stories of many kids who continue to fight, or whose parents, like us, keep some memories of their lost battles on the web. We see the numbers getting better every year - two thirds of kids beat cancer - but the numbers are still much too high. Some of the kids we followed with Burkitt's lymphoma are cancer-free now, but many more are still fighting - the number of cases in the US was 300 last year. As I told George Bush, his replacement would approve new stem cell research efforts, although President Obama could still do more when the economy allows. The press gave more print lines this year to 29 coal mining deaths than the 6 million cancer deaths globally - but cancer is not explosive. It just hurts.

We are blessed for another year with the lively spirit of our kids and grandkids, and we hope our daily, sometimes hourly, moments of remembering Drew never fade. After the kids (often led by Llandis) ran around, crashed into, or jumped over everything at the Y yesterday, we were reminded that there is a little Drew in all of us.

And another year...

The economists are writing books these days on the shape of the economy. Will the economy be a V, recovering as fast as it fell earlier this past year? Will it be a slower U or a dreadful L or a bouncy W? Regardless, we will ride out the storm financially.

Emotionally, the third year since Drew died has been a ~. It’s the only character on my keyboard that makes sense. A wiggle of sorts. Not a w or a dash but a ~, whatever you call it. Ups and downs.

I had hoped the ups would totally wipe out the downs. And the ups have been big. Each of our kids are doing well and we are surviving the recession intact, busy, and optimistic.

Melissa and Dan were determined to have more kids, and now their ultrasounds of growing twins due in November make the future look so bright. The coming chaos of five kids under four at Christmas is a family legend, even before it happens. Dylan’s joy over trains and playgrounds is uplifting on demand, and he talks for days about "Webrook and Llandi"before and after visits with his cousins and Gram and Suppie.

Mary and Wade are sharing their kids with us in all the right moments – from sleepovers to drop-by hugs to school-bus Mondays. Westbrook’s chatter is a constant hoot – he brightens up every room he enters. Llandis has a smile that is indescribable. I cannot flip through pictures without pausing on her grins and curls and just saying “wow”.

Ben impresses us more each day with his grades, rugby, and a natural leadership trait no longer hidden by birth order. His rugby team was nationally ranked and gave us dozens of fun road trips. He and Laney join family events with regularity and make everyone smile. The grandkids love ‘em.

I am still employed by a company that is still bullish on the future and still a good place to work. Jane remains the uber-volunteer, helping soccer clubs and other local organizations between grandkids and ballgames. The three parents from the greatest generation have some health challenges, but they are still engaged in our lives, even if not playing golf like they used to. The family thankfully has fewer dogs in total. All surgeries were successful on the first or second try this year. Only three of us are in physical therapy, and all three are getting stronger.

We gathered at the Y again for our June 7th picnic and fun and family picture. The competitions for football throwing, frisbee-in-the-trashcan, and can-Ben-really-jump-through-a-rolling-hula hoop would have made Drew proud, even if he would have still won most of the competitions. We enjoyed a perfect morning on a special day, and numerous e-mails and a call from Jordan made it even more special.

Everyone should be so lucky.

The rub comes in very small ways. The snippet of a song, the Bryant Park Soccer Complex sign on Rt 29, the sheepish grin from a spirited three-year-old after a risky leap off the coffee table, the unique sound of certain electronic beeps, the good-looking kid in black sunglasses on a campus sidewalk. So often, after such a snippet of familiarity, Jane and I are quiet awhile, or a day, before one of us says, “I still can’t believe it.”

Thanks for your ongoing support.

Checking in - Drew's 26th Birthday

Drew's 26 birthday was again the inspiration for our family blood drive.

As you know, the number one use of blood products is cancer treatment. To stop cancer from spreading, you need to clean out the body's plumbing so cancer cells can't travel around. Chemo and radiation take their toll on the blood, and Drew had lots of chemo and radiation.

We have probably exceeded our goal of replacing the many dozens of pints of blood products Drew used, but the need has never been greater in our community.

So we held our third blood drive on Drew's day, this year at the Harris Y. The day is a bit of therapy and a bit of giving back and a lot of great visiting again with Team Llewellyn. And Team Llewellyn came through with a VERY successful day.

Statistics:

- Eighty folks came by - wow

- Eight of them were born since June of 2006 (too young to give, but they enjoyed the cookies).

- We added 34 pints of blood and three pints of platelets to the Charlotte blood supply this day. A half dozen others will return when their cold medicine wears off or they eat a little more spinach (low iron). A few were turned away for crowd control - we had so many donors at one time we overheated the air conditioner motor at the Y (sorry).

- We reached folks via email, phone, Facebook, blogs, and people just remembering it was February 13th.

- We also had donors in Melbourne, Seattle, Raleigh, Washington DC, and maybe other cities to give on Drew's day to their local agencies, and the donors in Richmond will enjoy cupcakes from recent honeymooners to Mexico who have to wait a while to donate.

- Twenty of the eighty were related to us in some way...two cousins drove three hours to join us.

- One out-of-town friend sent his sister and another sent her brother.

- We had several first time donors (the youngest 16 and the oldest 50 something)

- Several folks we didn't know saw the drive going and stopped by - we made a few new friends.

- Four folks played soccer with Drew, four others coached him.

Thanks again to so many who came. Whether they could give blood or not, it was great to see everyone, to hear from the many folks who could not come, and to inspire us to keep the spirit alive.

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Since we last posted, we have watched three grandkids grow and develop - the boys are big talkers and Llandis is adding a few words to her wobbly walking skills. Their smiles and bright eyes bring us constant joy. Drew moments still put tears in our eyes frequently, but the occasional visits or notes from his friends are truly cherished, and we got them from several of his friends recently. "Team Llewellyn Game On" wristbands (only 500 in the world) are not as common as Lance Armstrong's yellow "Livestrong" ones (70 million), but the following stories are true:

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A girl walks into a bar in Rejkjavik, Iceland. She has a blue "Team Llewellyn Game On" wristband. A guy walks up and says, "I couldn't help but notice your wristband" and shows him his identical one... Drew's cousin and a college friend meet for the first time.

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A few months later: A girl walks into a bar in Queenstown, New Zealand. She has a blue Team Llewellyn Game On bracelet. A guy walks up and says, "I couldn't help but notice your wristband" and shows his identical one....another of Drew's relatives and a Charlotte high school friend.

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A small world? Incredible odds? Or Team Llewellyn members are an interesting bunch? Yes, you are an interesting bunch. Thanks for hanging with us.

...and Another Year

It has been another year.

The visits to this blog have tapered off, especially since the new blogs – for the grandkids – have gobs of traffic and funny pictures and a few tears and lots of laughs, as young families renew the cycle of life. Go there for fun.

Our perspective on the past year – our second year without Drew – is right out of the textbooks. The second year is harder.

The first year was a continuous set of challenges – yes, devastation, disbelief, poor sleep, anger, and all the other expected emotions and reactions. We were also busy with the process of loss. We had projects to handle, details to close out. We had people to tell and so many firsts to experience. We could plan the grief and the memories and the organized remembrances. We said a million thank-you’s, handled a million awkward conversations, and did things differently in a million little ways, inspired by Drew’s spirited approach to life. We finished the room, the memorial, the cleanup (ok, we have a closet left – we will get to it soon). We made a million decisions that first year.

The second year was no longer about first experiences. We returned to work, returned to regimen, returned to our dynamic family calendar. We experienced for the first time how it’s going to be from now on.

We continue to get those painful moments, which we discuss days later, at a quiet moment:
- when mail comes for Drew offering the “deal of a lifetime”.
- when the young man in the grocery store that passes you in the isle looking so much like Drew that your heart stops beating for a few seconds.
-when someone asks about your kids who doesn’t still doesn’t know. Or forgot.

We have well-used tear ducts. Once or twice a day seems like the average for wiping a few tears. We’ve noticed that long drives alone are hard, since the think time always shifts to favorite trips, favorite songs, favorite stories, and Drew was a fourth of all of them. We go to the Y and sit on the benches and watch the grandkids run around on weekends. We cried at a graduation and three weddings – at what might have been.

We have changed, and we aren’t always happy with the new “us”. We won’t change back, I would wager, but the new “us” isn’t too bad. We hope.

Some things are going great. Our three grandkids are amazing. Westbrook’s love for laughter comes from both his parents, and his big smile will surely get him the same advantages his uncles get from theirs - a bright-eyed boy who says “Hi, Suppie – Hi, Gam” even when only one of us is in the room. Dylan is brave – a tall sliding board is no match for him – and he mimics his hard-working parents with lengthy work sessions with his Lego blocks. Llandis smiles constantly as she sits in our laps watching the keyboards click and grabbing the phone cord as she explores a world that soon will be much larger when she conquers crawling any day. Grandkids are wonderful.

Ben is visiting friends in Australia after a good school year and a successful season of rugby. Mary and Wade love parenting but could use a little more sleep. Melissa and Dan played the housing market to perfection and are enjoying Cary and frequent visits at either end of I-85. Jordan graduated and keeps in touch like another daughter. Everyone is working hard – maybe too hard.

We had more family events than ever – we hope that is a permanent change, too. First and second birthdays are always fun, and 53rd birthdays could be worse. Our blood drive on February 13th was fulfilling (no pun intended). We have put more donations in the blood bank than Drew took out, and he took out a lot. They still need more – please keep giving.

We close the year with closer friends, closer family, bright-eyed toddlers, jobs which keep us fed, and no new hospital bracelets.

Year three is supposed to be easier.

Jane and Boxley

A Year Later

It has been a year.

While this blog is Drew’s story, it is also about Team Llewellyn. Some of you keep coming back to this site - some to say good morning to Drew, some to re-read a few lines or a dozen pages, and some to check to see if anything is new. At least that is what we do, and what you tell us you do. The visit counter keeps going up. Maybe it's time for an update.

In case you couldn’t stay in touch, the family returned to schools, jobs, and volunteer work. Westbrook added great happiness in our initial saddest days, and Dylan’s birth doubled the chance to see how life renews itself. Mary’s second child is on the way for October, so the joys of first words and first steps will continue.

Ben bravely returned to school in Australia but is now back in the States and finished a good semester at Appalachian State. He brought his humor and enthusiasm home intact, with a noticeable dose of maturity and rugby skills. Mary and Wade shared Westbrook’s first year with us all, including a cake-smearing first birthday last month. Melissa and Dan hosted us for Thanksgiving, a family favorite holiday, followed by the birth of Dylan, who was almost born in the hospital parking lot. We turned Drew’s birthday into an event, inviting friends and family to donate blood and platelets to the local bloodbank which we hope to do annually in Drew’s honor.

Yes, we also did more hospitals. As if we hadn’t had enough in our months in Charlotte and Duke, Boxley did two tours at the Mayo Clinic for a pacemaker swap and an aortic graft in the fall, while Dan spent Christmas struggling with a rare reaction to medication. Jane stayed healthy but is engaged with Duke and CMC to bring cord blood collection to Charlotte. Her first visit back to Duke was emotional but worthwhile – they are excited about her passion to bring more attention and action to stem cell transplants.

Jordan is continuing her studies in Communications at ECU with a December 2007 graduation date in sight. We talk often via email, cell phone and text messages with lunches and visits on rugby fields as we can. She is and always will be an important member of TEAM LLEWELLYN. While this has been a painful year, we are all proud to have made it through - and made it through together.

As to our view of the year, we could all write a book. Unfortunately, The Grief Club is already taken.

Grief, says the book, is a club you join. Outsiders don’t fully understand, and the club has different rooms for different losses, since even inside the club, grief is hard to generalize. The toughest room is the one for those losing kids. The books say grief gets worse for a few years before it gets better. It doesn’t go away; it just becomes part of your life, which you manage as best you can. We manage grouchy moods and frequent tears and our loss of innocence day by day.

New babies are the best thing ever for the club members, and we have been lucky to have two cuties. Big smiles and lots of energy are contagious. Ben is a fabulous uncle, and he can’t wait for the little ones to walk and throw and start chasing him in the yard. The blogs are filled with images of great-grandparents holding the boys, grandmas feeding them and lullabying them to sleep, and those bright eyes when Mom and Dad come in the room. No grief prescription could be more potent, nor as well photographed. See the evidence at themetwo.blogspot.com and http://themethree.blogspot.com

The war losses and (especially as alumni) the Virginia Tech tragedy remind us daily of other families losing young adult children who are painfully joining the club. With our close family, the support of so many friends, and no ongoing financial, legal, or guilty aftermath that many families experience, we are somewhat blessed. Maybe we are not in the toughest room in the grief club.

In the coming weeks, we will gather at the Harris Y near our home on the sidelines of the practice field where we spent so many hours watching Drew and others practice and play. Drew did not want a cemetery plot, but we wanted a place to remember him. We proposed a simple bench to the Y staff and instead they are building a GameOn shelter for parents to sit for their long hours watching the kids practice and compete. Some families will have a Drew who stays later, and practices longer, juggling a ball on his foot for hours and pounding shots at his brother and dad. They are the really lucky ones.

Drew discussed going to the Y on that day last March when, after a few pains in his stomach, we all realized that the cancer had come back. He didn’t practice that day, but a small plaque will encourage other kids to do so. Stop by for a visit sometime to the Y next month, or to our house any time. He would like that.

The Closing Chapter

Every book must have a closing chapter. It doesn’t mean there won’t be more written someday, but this blog started with a scary day at Duke, when we heard that Drew had a one-in-four chance of being cured of his cancer. It ends with answers, an honor, and a list of memories.

This blog followed the daily events of Drew’s fight with Burkitt’s lymphoma, hoping that we were recording a story that would inspire other families to push for the best medical care, stay closely involved, and see our success as hope for new cures for cancer.

We told a good story, and we had plenty of inspiration and hope, but we don’t have the ending we wanted. We do now have some answers.

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The autopsy results came today in a phone call from Dr. Rizzieri at Duke. He explained the results in the caring, thorough way we had grown to expect, answering our hypothetical questions and explaining every word.

Drew died from an infection. The fungus, rhizobium, is one that is very common and he may well have carried it inside him to Duke back in March, or picked it up along the way. We all experience it. This fungus doesn’t affect you and me because our immune systems fight it off. It can only hurt those with compromised immune systems due to illness or transplant. It has no known cure. No antibiotic works. If we had known he had it three weeks before, we could not have done anything. We would have simply been in agony for three more weeks.

This infection typically starts in the liver, goes to the lungs, and ends up in the brain. Drew had swelling, then lung problems, and then the stroke. Drew went to intensive care eager to solve his lung problems and move on. The infection grew, however, and a large clot lodged in the main artery of the brain stem, and nothing could have removed it or made it better. Closure. No what-ifs or why-nots. Bad luck.

Dr. Rizzieri also asked for a favor. He has an annual conference of doctors and medical folks each year who gather to talk about the stem cell clinical trials and advancements of the last 12 months. Each year, he uses a patient example to start the conference, which reminds the audience of the human side of their science. This year’s conference will start with Drew’s story. We were honored.

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So, how to end a book, or a blog, that has produced and been produced with laughter and tears, pride and prejudice, teasing and truth. Mary had the idea to end with a family view of Drew, giving a bit more insight than simply recording a few months of his life - a life some knew well and some hardly knew at all. His three siblings and two parents wanted you to know more, so we all sat at our computers the last few evenings remembering 23 great years with Drew. Feel free to add your own list – we have cherished your comments throughout this journey and would love more. Thanks for the thousands of visits, calls, letters and donations in Drew's honor, and thanks for the ongoing interest in our lives. But we plan to stop writing now.

So, as this GameOn ends, we close with 100 things about Drew:

1. Drew mumbled almost every word for at least a year of his life (or was it five years?).
2. He had a ponytail at one point that looked ridiculous, but he was so proud of it.
3. He refused to eat fast food. Except Subway.
4. Drew once ran down a dock, jumped over a picnic table and dove head first into the water.
5. As a kid, he refused to go upstairs by himself.
6. He would answer to the names "Drewbert" and "Drewly". Dad called him “His Royal Drewness” sometimes.
7. He loved Teenage Mutant Ninja Turtles as a kid. (I bet he still did as an adult.)
8. Drew used to chew on the corner of the seats on the bus and the back of the headrests of the Volvo when he was nervous.
9. Both Volvos have holes in the headrests today, we’d bet.
10. He ran really, really, really fast. He once finished a 5K race before they had time to set up the finish line tape.
11. Drew would dye his hair during his boy band look-alike days.
12. Any time he did something wrong, he always got caught.
13. He was a great brother and a great hero.
14. He always had to be right.
15. He loved arguing.
16. He had to have the best brands on the tag of his shirts.
17. He usually cut the tags out of his shirts because they itched.
18. He always had to look his best (even in the hospital).
19. Drew and his dad used to talk sports. This year they talked careers and goals and aspirations and how to talk to prospective father-in-laws. Pushing an IV pole can really change a relationship.
20. He asked great questions, and he listened to every word of the answers.
21. His best time for questions was after a quiet moment in a long car ride.
22. Drew took lots of long car rides, and he was never bored. He was also never boring. Never. He could make any activity into a contact sport.
23. Drew was the first one to run into our new house in Charlotte in 1986 and dash up the stairs and pick his room.
24. Drew was the first one to visit the emergency room in Charlotte that same hour, after banging into the stair railing and splitting open his forehead.
25. Drew visited the emergency room an average of once for each of his 23 years. The last few were the most scary for his parents, and probably for him.
26. Drew had a very high pain threshold. When he said something hurt, it was probably already bleeding, dislocated, seriously swollen, or malignant.
27. Drew was generally very honest, sometimes embarrassingly honest. When he wasn’t a few times, it really hurt him deeply. He would have liked to have had more time for apologies.
28. He doesn’t need to apologize.
29. He was never afraid of the biggest kid, nor of defending the youngest or weakest kid if they got picked on or teased. His dad was always most proud of that character trait in him.
30. When he bumped into you, it hurt. Even when he was two years old. He was solid.
31. His biggest disappointment during his cancer treatment was forgetting to shave the top of his head just once so we could all laugh and take pictures with Dr. Limentani. (They never stopped kidding each other about their hair.)
32. His early soccer games were full of Drew running everywhere on the field regardless of his position. He was everywhere.
33. His baseball games were the same way…he was the only second baseman to run out to the fence to retrieve a ball. He needed a leash. (And then there was basketball…)
34. When he was mad at himself or someone else, everyone on the soccer sideline could tell….you would hear a murmur in the crowd. “Drew’s gonna get a card.” And he would get the card. And the ball.
35. Drew would have been driving a Jeep when he was 70 years old, if they still were allowed on the roads. Or if they weren’t.
36. He was a great helper around the house or in the yard or with a hammer or a rake. He could make projects fun. But he hated doing the dishes.
37. He must have won at least 90% of all the games he ever played. No matter the sport or the quality of the team, they seemed to always win more than they lost. It was spooky.
38. Can your kids be your heroes?
39. He wanted to be the first to hold Melissa & Dan's baby.
40. Drew always listened to his big sister. When he was dog-sitting for her, she told him to walk all 5 of her dogs. He did, one at a time around the block, on a short leash, before going to bed. She meant to put them outside for a few minutes.
41. He preferred vanilla over chocolate (we always thought that was crazy).
42. He inspired others, even at his low points.
43. Drew loved to travel. He visited five countries and almost half of the fifty states.
44. He sucked his thumb as a toddler, way too long. One day, Dad told him to stop, and he did.
45. He never met a stranger.
46. Drew wanted to name a daughter Grace.
47. He was always very polite, even called his sisters “ma'am” sometimes.
48. He was scared of "Jaws", and he jumped over four people to get away from the fake shark on a ride at Universal Studios.
49. As a kid, he got stitches on a regular basis, but it never slowed him down.
50. He was a creative thinker.
51. There are photos of Drew and Dad where they are nearly identical at the same age.
52. Drew was painfully unflexible physically – he never could do yoga.
53. To get out of doing the dishes, Drew broke them one by one, it seemed.
54. He was madly in love with a girl named Jordan.
55. She always said “he is so handsome”, even when he was very sick.
56. He never let his mom, sisters, or girlfriend carry anything. He would even carry Jordan’s purse if it got too heavy.
57. He always made Ben know he would never beat him.
58. He was always very proud of Ben for trying so hard.
59. He has been strong as an ox since we can remember.
60. He was one of the luckiest kids we know when it comes to injuries.
61. Drew showed no mercy to his younger brother in fights and sports.
62. Drew was an amazing athlete.
63. A few times, he really wondered if Alli was better at soccer.
64. Drew should have stayed blonde (sometimes as ditsy as they come).
65. Drew never gave up.
66. He was a good teacher (sometimes what not to do).
67. He was a great Halo player.
68. Drew was a poor ice skater (the only sport I think he wouldn’t have dominated).
69. Drew seemed to get anything he wanted with just a smile and “please, Mommy”.
70. Drew had a hard fist but a harder head.
71. Drew could convince anyone to do almost anything.
72. He was a true Southern Gentleman.
73. He was a funny kid.
74. He was very much NOT the cutest of babies, but he made up for it in the long run.
75. He had a great pup named Annie.
76. Drew took hours to get ready to go out.
77. He loved his Taylor guitar. He had every song by Dave Matthews. He could play most of them.
78. Drew wanted to name his brother “Turbo”.
79. Drew was petrified of lizards.
80. He could jump really high.
81. He jumped from really high places, like second story windows at school and his bedroom window late at night.
82. He jumped even higher when he saw a lizard.
83. He enjoyed Teen Cotillion but wondered why the girl’s hands sweated so much.
84. Drew was really excited about being an uncle.
85. Drew loved the game of soccer.
86. He would only play in the blue jersey.
87. He wanted to be a volunteer fire fighter in his spare time.
88. He was practicing to be a kicker so he could try out for an NFL football team.
89. He wanted to do so many things.
90. Drew loved his family very much.
91. He liked to see a new movie on opening night.
92. He believed the best meal in the world was his mom’s Thanksgiving meal; Missy’s was a close second.
93. He wasn’t Shakespeare, but he wrote hundreds of pages of songs, journals, and letters. Some were loving, some were angry, some were special, and some made no sense at all.
94. Drew played a girl in his high school play.
95. He kept the cleanest room in the house.
96. He had the greatest smile.
97. Drew cried a few times in the hospital, when it really, really hurt. But he never gave up.
98. Drew loved kids.
99. He never once talked about not surviving cancer.
100. Drew had his mom’s heart from the moment they met.

Andrew Brown Llewellyn

1983-2006

Dates and places

This is the day Drew was supposed to come home from Duke, cancerfree and with Waldo's stem cells doing their job in his new immune system. Instead, we fill cardboard boxes, pull down wallpaper, and start redecorating his room as Drew's Place, the bedroom turned gameroom at our house. Some memories will remain, of matches played and trophies won. Some memories will be covered over with spackling and paint, but the stories behind those holes and dents will remain. And maybe we will finally find the "F-G" encyclopedia and other lost things in his room.

This is the 60th day, the typical isolation period after the stem cells "take" that results in freedom to go home and restart your life. The stem cells did work, the blood tests were all good. But something else happened, and we wait for news on exactly what.

Somethings remain painful and some things are easier. It hasn't been hard to watch soccer the last two months. Although we wander off into the "what could have been" while watching games, we enjoy the occasional sighting of Drew's teammates and age-group making the game-winning save, as in the MLS Allstars vs. Chelsea yesterday. It has been hard to watch other television, however, as the medical shows and CSI shows seem to dominate. And for the folks that were in the room with us in Drew's final moments, walk out of the last five minutes of the Miami Vice movie. That hospital scene is especially tough.

It has been easy to forget, however, when Westbrook smiles. He will always be special for his excellent timing.

(and, no, he is not potty-training yet. This is just a baby seat. Really....he's only three months old...)

Collateral Goodage

Ok, maybe that isn't a word.

But good things happen from bad things. While we didn't stop President Bush on his stem cell veto nor help the Middle East peace, some good has come of this year in our lives (in addition to grandchildren). No better example than a bulging manilla envelope in the mail today.

Inside were 54 envelopes from the Carolina Blood Bank, each from someone who donated a pint of blood in Drew's honor back in June. We knew a few - soccer sideline friends and nurses we won't forget. Add that to the similar number of donors to Duke's Stem Cell center, dozens more who donated to local cancer societies and similar charities, and the awareness that Drew's disease caused. Ben is even confusing the Australians trying to become a bone marrow donor in Oz.

We don't know what the doctors and specialists and nurses learned from Drew's adventure into their careers, but many told us the emotional side and a few wrote to describe how it positively changed their approach to medicine. While he will be a negative data point in a clinical trial report, his trip through the cancer hallways may have taught someone something that they will use again.

Maybe, just maybe, his journey will cause someone else's journey to end better. We hope so.

Collateral Damage

The cover of Time Magazine this week shows a street in Lebanon or Israel after an airstrike. The photo is in color, but the color is all gray, save a few signs and bits of cloth. Just like the 9-11 photos, their world is covered by the dust of what used to be concrete and streets and people's lives.

Cancer has its own collateral damage. The first missles are a big surprise and they keep coming until you wonder when they run out. But the dust keeps settling on everything, in every corner and every window sill. The impact point looks bad, but the dust goes everywhere.

We seem to be in a state of constant bombardment of reminders of our time with Drew. We don't want to ignore what's happened - sometimes the chance encounters with folks who don't mention it are more uncomfortable than those that ask, with true concern, how we are doing. And we refuse to remove the zillions of pictures, trophies, and memories from our homes and wrists and harddrives. We will learn to sleep through the night again, just not as quick as Westbrook has.

The world doesn't let up, either, with its barrage. Recent bombing runs include Ben's return to Australia, a tough day for both those leaving the nest and the empty-nesters. He got his own scare when he arrived in Australia to find himself unenrolled and his tuition check returned to sender - that one took lots of scrambling and seems to have been solved. We have also been amazed at how often the word "cancer" comes up over the course of one day of reading, TV, email, and conversation. (Google has 815 million references to "cancer", well ahead of "God" and "peace".)

The insurance companies keep us from relaxing. A contest: who can guess the closest to the cost of 39 days at Duke (the medical center, not the school)? A prize for the closest number. And the insurance folks who audit like to contact us every few weeks to report another discovery, always in their favor, which Jane then disproves with her great record-keeping and strategic crying fits.

Unlike the Middle East,though, we have lots of color amidst the dust. Melissa's bubbly calls about the latest progress on Grandkid 2 make us smile, and Grandkid 1 is smiling himself now, along with being generally cute. Our friend and family support team has not forgotten us, and we are putting empty-nester plans all over the calendar. The insurance processes may annoy us, but the individuals have been great overall - one even told us that when a customer challenges a claim, they are usually right so they always pay attention. And the whole affair renews our faith in working for good companies with great benefits.

We continue to await the autopsy results, an important part of the closure to this adventure. In the meantime, we'll keep clearing the day's dust and counting our other blessings.

Dear Mr. Bush

President George W. Bush
1600 Pennsylvania Avenue
Washington, DC

Subject: Stem Cell Research


Dear President Bush,

You will have a significant domestic issue of law placed in front of you soon. In the face of the Middle East, North Korea, and Iraq issues, the domestic front may seem of lower priority. However, you have an opportunity to make a positive step in the midst of uncertainty over world events. As a voting Republican for many decades, I see this issue as an important one for our families and for defining the politics of the future.

You may see legislation passed shortly on the difficult issue of embryonic stem cell research. There are three reasons I think you should immediately send a message to the country that you will NOT veto a bill which expands research if and when passed, and support its passing.

First, the value of stem cell research has been dramatically played out for my family in the last year. One of my four children, Drew, died of lymphoma last month after a long and valiant fight. His medical team used the latest research and clinical trials, trying new drugs and techniques, but their skills were hampered by the tools available. Federal funding for stem cell research for lifesaving medicine and treatments is held back by concerns over its use, and thousands like my son die each year. Moving the process ahead will save and improve lives, as one in three Americans will have Alzheimer’s, cancer, juvenile diabetes, or other diseases which could be helped by stem cell treatments. No issue before you could touch more lives than this one, directly or through family and friends.

Second, the legacy of this issue will soon pass to someone, as medicine has overcome fears of abuse in the past, and managed those issues that arose. Early medicines and treatments and research all had years of religious and “personal freedom” debate in the past centuries, before we decided that the health of the people was the most important issue. Your legacy should not be the last president to fail to realize how important and eventual expanded stem cell research will be, and that its monitored expansion is required.

Third, as a person raised in a Southern Baptist family, I understand the importance of faith and the challenge of translating the guidance of the Bible into today’s technology issues. I look, like you, at this issue ethically as well as technically, but I see it like many facets of our life – weighing the ideal against the appropriate. Using medical waste to harvest embryo cells the size of a period on this page is not covered in the Bible, but the hundreds of cancer patients sharing the hall with my son had one common view, regardless of their religious backgrounds – if they died, use their bodies and their experiences to help other to never get this disease nor suffer through its treatment. My son’s life was prolonged and he was nearly cured, by the way, by a cord blood transplant from “adult” stem cells harvested after the healthy birth of a baby. Research produces results, and embryonic stem cells offer greater promise.

Future research can develop ways to save patients like my son. As a country, we rejoice in blood donors, organ transplants, and new treatments, and we learn to do them ethically, morally, and religiously “right”. We can do expanded stem cell research the same way.

Please think carefully on this issue, and use it as a positive move to show trust in our country's ability to lead and manage tough issues. I urge you to support eventual embryonic stem cell research rather than delay it. This is a tough issue, and changing your mind is acceptable once in a while.


Boxley Llewellyn
Parent

(Click here for the President's response - well, a recent speech - with which I disagree.)