Saturday, December 24, 2005
Thursday, December 22, 2005
I stopped writing to you a few weeks ago. I don't really know what that means, but I've been trying to figure it out. Maybe I am at a different place in the whole being sad process. I do think about you all the time. You are my constant companion.
I will throw stuff up here time to time, but probably nothing like before.
I love you.
Sunday, December 18, 2005
Right down to "superhero" Trent sounds a lot like you. I can't imagine how these parents feel losing two sons. The night before your death day last week I dreamt that both Joe and Jack died. I remember in my dream that I didn't know how to tell people. It was too hard.
Today is my birthday. It'll never really be a "Happy Birthday" without you around. I miss you.
Teen touched many in his short life
Grand Prairie: He's called a superhero for staying upbeat in face of illness
Sunday, December 18, 2005
By KATHY A. GOOLSBY / The Dallas Morning News
GRAND PRAIRIE – Trent Parum's short life was defined by illness, but what will stay with his parents was his zest for living.
From left: Trent Parum's brother Matt, mother, Sally, and father, Mike, show a photo of the 16-year-old, who died Dec. 6 of Fanconi's anemia, a genetic disease. "Despite the overwhelming physical difficulties and impediments he suffered, Trent made do with what he had and enjoyed the things he could do," said his father, Mike Parum. "He didn't dwell on the things he couldn't do."
Trent, a sophomore at Grand Prairie High School, died of Fanconi's anemia on Dec. 6, three weeks shy of his 17th birthday.
Only a few weeks earlier, Mr. Parum took his son to a showing of Harry Potter and the Goblet of Fire. It didn't matter that Trent was blind and couldn't see the screen.
"He loved the Lord of the Rings and Harry Potter movies," said his mother, Sally Parum.
Trent, the youngest of three sons, was diagnosed in 1990 as having two life-threatening illnesses – the Fanconi's anemia, a congenital disease that affects the body's ability to produce cells, and acute lymphocytic leukemia. A bone marrow transplant resulted in the graft-vs.-host disease that scarred Trent's corneas and eventually robbed him of his vision.
Tests showed that Trent's brother Brett, who was three years older, also had Fanconi's anemia, which is genetic. Doctors suggested doing a bone marrow transplant while Brett was still healthy, but his body rejected the graft. He was 7 ½ when he died in October 1992.
Although chemotherapy cured Trent's leukemia, the Fanconi's anemia continued to affect his body. He never grew beyond the size of a 4-year-old, and his lung capacity diminished over the years, forcing him to use a wheelchair to conserve oxygen.
But somehow Trent remained upbeat and positive, said Larry Keirn, pastor of Turnpike Church of Christ, where the family worships.
"It didn't matter what came his way, Trent always had a great attitude," Mr. Keirn said. "It's hard to imagine with all those health problems, but what we'd think of as being limiting, I don't think he thought of that way."
Trent was a superhero, said Travis Dosier, a friend since preschool. But Travis also remembered doing normal kid things with Trent and his brother Matt, now 22.
One of his favorite memories happened when he and Trent were about 8 years old.
"Me and Matt used to go outside at night, and Trent would go out and pretend there was a monster," said Travis, 16. "He'd holler, 'There's a vampire!' and we'd all run back inside."
During a memorial service at Turnpike Church of Christ on Dec. 9, Trent's infectious smile and keen sense of humor were mentioned repeatedly.
Family friend D. Gene Strother said he would tell Trent, " 'I want to be like you when I grow up.' He'd say, 'You couldn't be like me because you'd never be as good looking as me.' "
Trent learned Braille to keep up with his studies at Grand Prairie High, where his mother teaches language arts. Although some of the math classes were beginning to challenge Trent, Mrs. Parum said, he excelled at English and history.
"He was just very intelligent and full of energy," said principal Rose-Levy Brenner, who also knew Trent when he attended Adams Middle School. "I think he touched a lot of people's lives in ways he didn't even realize."
In August, two weeks into the school year, escalating lung problems forced Trent to begin homebound studies. A few weeks ago, his father talked to him about the future.
Mr. Parum wondered what would happen in another 50 years.
"I said, 'Your mother and I won't be here. It'll just be you and Matt,' and he said, 'I think I'll die at a young age because of my health,' " Mr. Parum said.
"So he was very much aware of his health, but he never complained."
Staff writer Herb Booth contributed to this report.
Thursday, December 15, 2005
We went out to the cemetery on your death day, December 11. It was dreary. And sad. But Mom did what she does best. She made the sun shine. She said, "Let's make a snowman." One snowman turned into three. One for you, Jack and Joe.
A lot of people are sending us their holiday cards right now. They have pictures of the family or just the kids. Everyone always looks perfect. I always wonder how many pictures you have to take to get everyone smiling or looking at the camera.
If we sent out a holiday card, I'd want this to be it. We are all here.
Mom said the other day that had you lived our lives would have been perfect. We would have everything.
Thursday, November 10, 2005
From: David Monroe [mailto:firstname.lastname@example.org]
Sent: Wednesday, November 09, 2005 9:45 AM
To: Christine Dulaney; Jack Goldberg; Cathy Sledz; Julie Hamlin; Marc Abshire; Linda Moskowitz; Franny Price; Sid Moskowitz; Connie Parker; Bryan Kanefield; Rick Dulaney; Charles Lane; David K. Monroe; Margery Doppelt; Scott Price; Ian Ludwig; Karen Foster; Lane Charles; Rob Satloff; Laurie Strongin; Teresa Gruber; David Hamlin; J. Marc Allard; Judy Abshire; Catarina Lane; Larry Rothman
Subject: Bumptious Birds Blitz Sox, 27-5
The AA Orioles closed out the 2005 Fall Season with a flourish, dominating the Red Sox, 27-5. The O’s had everything working against the Red Sox – offense, defense, base running, gum chewing – you name, they had it working. The Orioles’ victory, their fourth in row, improved their record for the season to 5 wins and 2 losses.
The victory was bittersweet, however, for it marked the end of an era for the Orioles. Saturday’s game was the last AA game for most of the Orioles, who will move up to AAA next season. After playing together for two years (and in some cases even longer), the Orioles will likely be scattered to different teams next year. Hopefully, they will remember their days as an Oriole fondly, and friendships that have been made will endure for many years to come.
But if you're going to end an era anyhow, why not party like it's 1999, eh? And the Orioles got the party started right off the bat. Eva opened the top of the first with a triple, and scored on Evan's ground out. David and Daniel singled, and Sophia doubled David home. Max's well-placed grounder then scored Daniel to give the O's a 3-0 lead. The Red Sox were blanked in the bottom of the first, with David (who else?) and Benji catching infield pop-ups.
The Orioles struck for two more runs in the bottom of second. Ari smoked a triple, tipped his hat to the crowd, and then scored on Jack G.'s double. Benji singled to advance Jack G. to third, and Jack P. drove him home with another single. A double play snuffed out the rally, however, and the Orioles had to be satisfied with a 5-0 lead. The Red Sox threatened to take a bite out of that lead in the bottom of the second with consecutive singles. But two force outs at third (one of them a nice unassisted play by Ari), and a grounder to Benji at pitcher retired the Sox with nary a run to show for their efforts.
No longer content to score runs in two's or three's, the Orioles batted around in the top of the third, adding eight more runs in the process. The Orioles' leadoff hitter par excellence Eva started the festivities with a single, and scampered to third on Evan's double. David then tidied up the bases with a three-run home run. Far from finished, the Orioles continued to pound the ball, loading the bases on singles by Daniel, Max and Sam. Harris scored Daniel with another single, and then, with the bases still stuffed, and the crowd murmuring expectantly, Jack Goldberg strode to the plate. Slowly, Jack eased himself into the batters box, digging in with his back foot, then holding the bat out for a moment, as if testing its weight. Tucking his chin behind his front shoulder, Jack hunched slightly, and turned his steely gaze to the pitching machine. The bat now back and ready, his grip tightening, Jack seemed to nod almost imperceptibly. He was ready. Behind the Orioles' bench, Jack's mom nervously rose from her seat, twisting a white handkerchief in her hands. The sunlight of Indian summer shimmered through her hair, framing her expression of excitement and concern. From then on, things seemed to move in slow motion. The pitching machine spat out a fastball with a slight puff of smoke. Coiled, but relaxed, Jack watched the ball hurtle towards the plate, the bright red stitching turning and turning and turning again. He waited patiently for the ball to reach the plate, and then, with a short, powerful turn of the shoulders, brought the bat around in a blur. The sharp crack of ball on bat startled the crowd. Jaws dropped, eyes widened, spectators and players rose as one to watch the ball rocket towards the outfield. Would an extended glove cut short its trajectory? Would a diving stop intercept its date with destiny? Jack was already half-way down the line when the ball hit the ground and shot towards the far reaches of the ballpark. As he rounded first, he saw only the backs of the Red Sox fielders, chasing a ball that still had no notion of stopping, or even slowing down. Rounding second, Jack knew he was going to go home, even before he looked up to see the wildly waving arms of Coach Rick. Coming home now, Jack knew the Sox outfielder had made a good throw. He could see the catcher's eyes tracking the majestic flight of the throw, positioning himself to make the tag. It would be a close play for sure. Immortality awaits the strong and the fleet. With a final burst of speed, Jack crossed the plate, just avoiding the tag. A grand slam! The Orioles, erupting in a spontaneous celebration, mobbed Jack as he made his way back to the bench. The Coach smiled to himself. It's going to be a good day, he thought.
With a 13-0 lead, the Orioles were perhaps a little distracted in the bottom of the third. The Red Sox managed four hits, but a nice play by Max at pitcher, and two catches by Ari at third limited the damage to two runs.
In the top of the fourth, the Orioles picked right up where the left off. Benji, Jack P. and Ian singled to lead the bases. Eva singled to score Benji, and Evan singled to score Jack P. Then David strode to the plate . . . and to cut a long story short, he noticed that the bases were completely filled with base runners. What else was there to do but tidy up a bit, with, oh I don't know, how about ANOTHER GRAND SLAM HOME RUN! Now leading 19-2, the Orioles retired the Red Sox in order in the bottom of the fourth.
But wait, the Orioles weren't finished yet. Harris opened the top of the fifth with a single, but was forced at second on a fielder's choice. Jack G. then followed with a single, and Jack P. chipped in a run scoring single of his own. Ian doubled home two more runs, Eva moved him to thrd with a single, and Evan and David added RBI singles. Then Daniel strode to the plate . . .and I think you get the idea by now -- smote a three run home run to make the score 27-2. The Red Sox rallied for three runs in the bottom of the fifth, but the final result was by then assured. The Orioles ended the game and the season with a nifty defensive play -- a diving stop by David and a quick flip to Jack P. at third for the force out.
The final numbers for the game were impressive. Eva(4-4), David(4-4), Jack G.(3-3) and Jack P.(3-3) were perfect at the plate. David had two HRs; Daniel and Jack G. also had a HR each. Eva and Ari had triples, and Evan, Sophia, Sam, Jack G. and Ian had doubles. David had 8 RBIs, Jack G. had 5 RBIs, and Evan and Daniel had 3 RBIs each.
For the season, Eva led the team in batting average (.773). Daniel led the team in slugging (1.250), OPS (1.950) and RBIs (16). Sophia and Harris tied for the team lead in home runs (3), six players tied for the lead in triples (1), and Ian led the team in doubles (4). Eva, Evan and Ian tied for the lowest number of strikeouts (1).
The final stats will be distributed tonight.
Your humble coach (Ret.)
Joe is going to be a great ballplayer, too.
Friday, October 28, 2005
You know how Mom had that great idea to get Harry Potter books for the kids in the hospital. She had another great idea the other day. She wants to get nice costumes and bring them to the hospital for Halloween. I remember the last Halloween when you and I trick or treated through the different departments at Georgetown. You weren't allowed to go out with the other kids so this was a good alternative. We had a good time going to Radiology and Physical Therapy and everywhere else. I don't think you were Batman. I think you were Anakin or some Star Wars character.
Speaking of Star Wars, Jack and Joe were both Darth Vader for Halloween. Anakin becomes Darth Vader in the last movie. It was called Revenge of the Sith. You would have liked it a lot.
Your brothers went to the dark side.
Tuesday, October 25, 2005
We went out to Cactus Cantina with all your buddies tonight for your birthday. Ari and Rachel were there.
Linda and Susan -- and Simon and Alex were there too.
Joe had fun.
I was sad.
This is a song I really like.
I Love You So Much It Hurts
by John Prine
I love you so much it hurts me
Darlin' that's why I'm so blue
I'm so afraid to go to bed at night
Afraid of losing you
I love you so much it hurts me
And there's nothing I can do
I want to hold you my dear
Forever and ever
I love you so much it hurts me so
I love you so much it hurts me
And there's nothing I can do
I want to hold you my dear
Forever and ever
I want to hold you my dear
Forever and ever
I love you so much it hurts me so
The Blues Clue's Birthday episode was on this morning. That is a neat coincidence. Remember how we used to sing the birthday song from the show all the time.
The Birthday Song!
Have a happy Birthday You-oo!
We'll have a great day too-oo!
Everybody play, It's Blue's special day.
Present time, Present time
Open up the present and see what's inside.
Blue's present was a pet turtle, Turquoise.
Joe doesn't watch Blues Clues anymore. We used to watch an episode every night before getting in bed to read. Now, Joe only wants to watch Animal Planet or play a video game.
There is a show in NickJr. that I really like called The Backyardegans. Jack and Joe don't watch it. I wish there was someone who'd watch it with me.
Now it's time for so-long But we'll sing just one more song Thanks for doing your part! You sure are smart! You know, with me and you and my dog Blue... We can do any THING... that we wanna do!
Sunday, October 23, 2005
Yesterday we had our hayride fundraiser for the Hope for Henry Foundation. It poured but more than 100 people showed up anyway. A lot of people love you. It is kind of like all of the people who showed up in the rain for your funeral.
Thursday, October 20, 2005
I called Papa Teddy just now. It is the anniversary of the day that he and Grandma got married. Before I called him I was thinking, "what do I say." When we talked I just said that I was thinking of him and Grandma, and asked him how he is.
I guess that is what I would want on your birthday next week. Just to know that people are thinking of you.
Mom and I are both taking the day off. I want to go to the cemetery. I think it will be cloudy and probably raining. That is fine by me. It is supposed to rain this weekend when we have the Hope for Henry Hayride at Butler's Orchard. That isn't so fine. It was so great last year. I am bummed if it is rained out.
I am missing you. I love you.
Monday, October 17, 2005
Hi. I am back. Sorry.
They announced the name of the baby panda today. His name is Tai Shan. That means Peaceful Mountain. They wait for one hundred days before they give the baby pandas a name. It made me think how they wait a hundred days after a transplant to let you go home. I guess that is the magic "you are going to live" number. Those are the only "hundred" time things that I know about.
Every other time thing is either 30 or 40 something. Tonight is Sukkot. Sukkot is the holiday when we remember how the Jews wandered in the desert for 40 years. Mom, Jack and Joe are eating outside tonight in the Shoyer's Sukkah. I just got back from a trip so I missed it.
I used to help Papa Teddy put up a Sukkah in our backyard. I miss that. I need to do that with Jack and Joe. It is a nice thing to do. It is cool outside and you can look at the full moon through the top. I used to really like hanging gourds on the sides.
Monday, October 10, 2005
Third daughter of UO president has genetic disease
By ANDY DWORKIN
The Associated Press
EUGENE — Beginning her studies at Stanford University, Amy Frohnmayer ponders the usual freshman worries: What should I major in? Will I get along with my roommate? How will I find all my classes?
One uncommon question also follows the South Eugene High School graduate: When will I have to put college on hold and head for my transplant?
Eighteen-year-old Amy, daughter of University of Oregon President and Medford native Dave Frohnmayer, has Fanconi anemia, a rare genetic disease that killed both her sisters. The illness brings a high risk for cancers and hampers the formation of blood cells, leading to anemia, fatigue, infection and bleeding. A bone marrow transplant doesn’t change the cancer risk, but it can fix the blood problems, stretching life expectancy beyond the usual 20 years.
But there’s a catch: This particular transplant works best when patients are fairly healthy, before they develop leukemia or severe infections. It also leads to the death of more than a quarter of patients, making it wise to delay as long as possible.
"I actually was going to have a transplant instead of going to school this fall," she said at her home in Eugene, as she prepared to leave for college. But "I’m so healthy now, and starting school, I just wanted to get on with my life.
"I’m getting used to the idea that it’s up in the air, and someday I’m going to have to do something ... But that’s life. It’s random and unexpected."
For Amy, life is a mix of wonderful possibilities leavened with the certainty of hard times ahead. In one sense, she said, she’s no different from others: A traffic accident could cut short any life on any day. But Fanconi anemia amplifies that, offering keener awareness of life’s joys while forcing early, often public, experience with sickness and death.
The Frohnmayer family has dealt with the disease since before Amy’s birth. Her oldest sister, Kirsten, was diagnosed in 1983 at age 10. Her other sister, Katie, also had the illness. Her father dropped out of the governor’s race in 1986 to help care for the girls. Their mother, Lynn, quit her state children’s services job to do the same.
The family started a fund to spur research into the illness, which was poorly understood at the time, and launched a highly publicized search for compatible bone marrow donors. They registered thousands of donors, which helped other patients, but found no match for the two girls.
Neither of the Frohnmayers’ sons, who don’t have Fanconi anemia, was a bone marrow match. Before Amy’s birth, the family hoped she could be a compatible donor. She was a perfect match for Katie. But tests just after Amy’s birth showed she had Fanconi anemia. That meant she could not be a donor but would need one, too.
Katie Frohnmayer died in 1991 at age 12. Kirsten Frohnmayer died in 1997, two years after a transplant from a mismatched donor, and two years after getting her bachelor’s degree from Stanford.
"Having my two sisters die has been very painful," Amy said. "But it’s also given me an appreciation for what I have. It just reinforces that life is so fleeting, and we are lucky to be here and have the people we have in life."
Amy is healthier, at her age, than either of her sisters were. She has not yet had a major health problem. When she does, and needs a transplant, the family has identified a potential donor who is a 70 percent match. And the fund, at Lynn Frohnmayer’s urging, sponsored research into a drug that has improved the success of such mismatched bone marrow donations to perhaps 70 percent, more than double the previous success rate.
Those odds spurred the Frohnmayers to go to New York to ask a doctor about a transplant this year. The doctor saw Amy’s robust health and busy life, and advised the family to hold off. "He said, ‘Do you really want to do this?’ " her mother recalls. "‘Yes, her chances are 70 percent. But what I want you to hear is, it’s only 70 percent.’ "
So the family is waiting, looking for signs of troubling mutations in Amy’s blood cells. She’ll have blood drawn every six weeks at Stanford and have bone marrow tests in Portland every six months. In the meantime, she’ll continue taking only a small dose of medicine to boost her blood counts.
"I have lots of energy. I feel good. I feel healthy," she said. "The bottom line is, I’m extremely lucky."
Amy threads her gratitude through life in many ways. Tacked to her bedroom door in Eugene before she packed for school was, "Some Reasons why Life is Beautiful." The two-page list included chocolate milkshakes, towels hot from the dryer and getting mail. The first item: "Falling in love." The last: "Getting out of bed every morning and being grateful for another beautiful day."
In high school, Amy packed her schedule with activity. She took courses to earn her International Baccalaureate diploma, took part in the Model United Nations and was an officer in student government. She played on the tennis team and helped found the girls cross-country ski team.
The senior class voted her "Most Likely to Succeed."
"The whole school knows she has this disease and knows the implications of that," Lynn Frohnmayer said. "But they voted her most likely to succeed. I thought that was fascinating."
Amy volunteers with Courageous Kids, a group that helps children deal with grief and death. Members started mailing her after her sisters died. But Amy didn’t go to meetings then. She wasn’t sure about public grief, shied away from counseling or support groups and felt she had to be strong for her parents. Grief, she said, is taboo in American culture — a topic she explored in a high school research project.
"Isolation is a huge issue throughout the grieving process. You feel alone," she said. "People are extremely afraid to talk about death."
Amy is working to change that. She makes a point of saying her sisters "died," avoiding euphemisms like "passed away" or "lost." She works with a Courageous Kids theater group, showing how grief can be healthy. Two summers ago, she was a Courageous Kids Camp counselor for four girls whose fathers had died.
She said she may want to work with grieving children after college, perhaps becoming a social worker like her mother. It’s a path Lynn Frohnmayer can picture.
"Amy is one of the most sensitive and caring and genuinely, deeply kind and compassionate youngsters I have ever known," her mother said. "Maybe that compassion, in part, grows out of what she had to experience and endure, but there’s more than that. She got this dreadful FA gene. But she got a gene for compassion, too."
Social work will have lots of competition at school. Amy has a long list of competing interests: psychology, poetry, literature, Spanish and international relations. She wants to study abroad in a Spanish-speaking country. She is excited about the diverse student body at Stanford — which includes her brother John, a junior there.
Picking Stanford, she adds, is no criticism of her father’s college: "I didn’t consider Oregon, but not because I don’t think it’s a great school. I do. But for me, part of the college experience is about getting out and being away."
But even as she leaves, Amy expects to find her way back to Oregon. She’s already considering what she’ll miss: grabbing a plate of pad Thai at Eugene’s Saturday Market, hanging out with friends on 13th Street, hiking Mount Pisgah, getting frozen yogurt with her mom at a shop near their home.
Her parents, too, will have plenty to miss. For the first time since Kirsten’s birth in 1973, there will be no kids living at home.
"I’m not looking forward to this at all," Lynn Frohnmayer said. "The bottom line is, she is my dear friend. She is a treasured companion. I love spending time with Amy. I’m going to have a bit of a tough adjustment."
On the Net: Fanconi anemia research fund: http://www.fanconi.org/Courageous Kids: http://www.peacehealth.org/Oregon/CourageousKids.htm