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