My Stevie D

I hope to recap today's uplifting memorial service soon, but fatigue is setting in. So for now I'll post the remembrance that Betty read in my place today.

Steve asked for three people to speak at his service -- his dad, Will and me. But he also knows my fear of speaking in front of more than six people, so he suggested that someone else read for me. Betty did an amazing job with the words and pauses and even the Steve "Yee haw!"

***

For almost two years Steve and I were focused on making him well, on fighting the Damm Spot. Those two years amplified the qualities that made Steve Steve.

During the first 38 years of his life, what he would call his charmed life, he was fearless. He was passionate. He was fully invested. He was creative. He was a marvelous friend. During the scariest challenge of his life – living with an inoperable, deadly brain tumor – he was even more fearless. He was even more passionate. He was even more invested. He was even more creative. His compassion and empathy as a friend reached new heights.

Steve wasn’t afraid of adventure. For the first 10 years we were together, Steve owned a motorcycle. But because Steve was Steve, it wasn’t just any motorcycle. It was a rare Italian racing bike.

Some weekends when we were dating he would drive it between Brenham and Dallas. One Sunday he took me out on a two-lane, hilly road on the Ducati. I wrapped my arms around his chest and held on tight, convinced I would be terrified on the ride. Steve was so confident, though, that my fears melted away. And the faster we sped, the more often he would chuckle or yell, “Yee haw!”

Steve wasn’t afraid to love, either. When we lived in Lubbock, we had awful luck with our first two Scottish terriers. Both died much too young. To be honest, after going through the heartache of losing two dogs, I really preferred to never own another.

I remember crying, telling Steve that I was afraid to love another pet, afraid of the pain that would eventually follow.

He eased my fears, telling me, “You can’t live life worried about what you’ll lose. You have to be open to love, even knowing there will be pain.”

When Steve loved someone or something, he did so with great passion. I would call it “unbridled enthusiasm,” a nod to a Seinfeld episode that always made us laugh.

I’ve never known a father more passionate about his children.

When it was bedtime at our house, nothing else mattered. Steve would beat me to the kids’ bathtub every time so that he could bathe them and get them ready to sleep. He looked forward to reading with Cooper and Katie every night and would often read past bedtime because he couldn’t bear to leave the room.

Because Steve was Steve, he didn’t settle for just any books. When Cooper was 3, Steve started reading chapter books aloud to our son. He introduced him to Charlie and the Chocolate Factory and Charlotte’s Web.

One of their favorite shared experiences was Harry Potter. Cooper and Steve read the first five volumes together and almost finished book six. When Steve’s voice started to fail, he wasn’t ready to give up their special time. Some days he would stop talking for two hours before bedtime so that he’d have the strength and voice to read four pages of Harry Potter aloud to his Cooper D.

About a year ago, I recorded a short video of 3-year-old Katie dancing on our bench on the front porch. Her outfit includes a red tutu and brown boots, and she shakes, stomps and shimmies with enviable confidence.

Steve loved this video. He would watch it over and over again, every time giggling or weeping a little, every time with his hand over his heart. He also made others watch it over and over again. During hospital stays, when Steve had his laptop computer open so that he could work from his bed, he would introduce nurses and medical assistants to Katie by showing them the dancing video multiple times.

I often called Steve all-or-nothing man. He was fully invested in whatever project he chose.

When he was a health-care consultant, he spent every week out of town. For three years he commuted to and from Los Angeles or Saint Louis. We both wanted to start having children, but neither one of us wanted Steve to be an absent father. He worked with dads who left their families behind week after week, and he couldn’t fathom missing so many school plays and sports practices and bedtime routines.

Steve’s new job with Children’s Medical Center was an answer to prayer. He would no longer travel, plus he would be working on a project that fulfilled his passion to help people. He helped to create a clinic for children from low-income families, ensuring that children would have access to quality health care. At the same time, he was available for almost every performance, practice, game and nighttime tuck-in.

In 2000, he chose running. Because Steve was Steve, he didn’t run just a little. He ran 5Ks then 10Ks and then marathons.

Back in 1994 he chose to marry me. He was fully invested in our marriage. He was equally gifted with big flourishes and little details. When we traveled, he always held my hand during a flight’s takeoff and landing. He did the same every time we prayed.

When we were in Paris to celebrate our fifth anniversary, he planned special themed days. One day was all about perfume. We stopped in countless shops so that we could sniff perfume until we found the perfect scent for me. I’ve worn Champs de Elysees ever since. Steve never let my supply run low.

Another day was all about chocolate. We bought and sampled chocolates throughout that romantic city. Ever since then, Steve kept my bedside table stocked with chocolates.

He always knew how to comfort me, how to make me laugh, when I needed time o alone, when I needed extra time with him.

Steve earned an MBA and spent his work hours analyzing data and producing detailed reports, but he never ignored his creative side. He painted, sculpted, created a floor vase, crafted a table, sang, played trumpet, told fanciful stories.

Steve’s capacity for friendship cannot be overstated. He was so humble and low key about his influence on others, though, that I didn’t realize how many people he’d affected until he was ill.
For years Steve told me about his fraternity brother and roommate Cory. What he didn’t tell me was that he was instrumental in helping Cory through a life-changing experience.

Cory wrote me this week to share the story about Steve – or as his Michigan friends called him, Cheeze.

Cory wrote: “I remember how he carried me in school when I couldn’t handle life. You see, in a house full of drunks, I had a reputation. By the start of my sophomore year at Michigan, I was addicted to alcohol and pills, I had been kicked out of school, my parents were getting divorced, I had no money left to stay in Ann Arbor, and I had no idea what to do. I remember the day I told Cheeze that I wanted to quit drugs and alcohol, but I didn’t know how or if I could. At that time I didn’t want to go to AA, but I didn’t know what else to do. Cheeze rounded up all of my pills (even the ones I hid) and tossed them.”

Cory continues to share how Steve supported him during the following years.

“A lot of people watched over me in those first couple of years, but soon enough I came to believe that life could be great. Cheeze couldn’t have been a bigger part of that. God willing, next week I will be clean and sober 21 years, and I have a fantastic life. I tell my friends in AA today that I got sober in a fraternity house where God had the greatest friends in the world carry me for Him.”

I feel the exact same way about Steve, my one true love. I know that God brought us together so that Steve could carry me and care for me for the first part of our marriage and so that I could carry him and care for him in the final months.

Of course, we desperately wanted our love story to continue until we were old and wise and gray. We had big plans for raising Cooper and Katie, for continuing to travel, for spoiling our grandbabies, for continuing to learn and grow together.

Already I find comfort that his beautiful spirit has found eternal peace. And that we all now have the most passionate guardian angel. And that the oversized way that Steve lived and loved will continue to ripple among friends and family and, most importantly, our dear Cooper and Katie.

Steve and Tyra, engagement photo, 1994

Preparing for Steve's service

Our church staff plus lots of volunteers are preparing a lovely service in memory of our sweet Steve.

Yesterday some of us met with Pastor Andy to review Steve's wishes.

Steve's thoughts included:

"This is the ADD generation, so it should last about an hour." (Note to guests: It may be a little longer.)

"It should be a celebration ... maybe even a roast."

"The service is not about my resume. I am not applying for a job." (I can just hear Steve saying this, and it makes me smile every time I think about it.)

"The service is not about me. It's about sharing Christ with others." (Well, a lot of the service will be about Steve. He's worth celebrating.)

***

As a remimder:

1 p.m. Saturday, Sept. 12
St. Andrew United Methodist Church, 5801 W. Plano Parkway, Plano
Reception immediately following at the church.

Children are welcome to attend the service. We will also have child care available. If you expect you'll use the nursery, please e-mail Mary Mitchell Trimble at mmtrimble@att.net by Thursday and indicate how many children and their ages.

In lieu of flowers, donations may be made to Holy Covenant United Methodist Church, 1901 E. Peters Colony, Carrollton, Texas 75007. Scholarship gifts for Cooper and Katie may be sent to The Steve Damm Fund, First National Bank Southwest, P.O. Box 1746, Frisco, Texas 75034.

Beautiful tribute

The Dallas Morning News ran a beautiful tribute to Steve's life today. You can find it here or read below. I am so thankful for the careful reporting, writing and editing that contributed to the piece.

Steve Damm: Hospital administrator for Children's Medical Center
By JOE SIMNACHER / The Dallas Morning News jsimnacher@dallasnews.com

Steve Damm lived his life with an all-or-nothing attitude, whether he was at work as a hospital administrator, at home as a husband and father, or fighting an inoperable brain tumor.

For the past 21 months, he managed to do all three, while maintaining his sense of humor.

Mr. Damm, 40, died Monday at his Frisco home of complications of his grade IV glioblastoma, or, as he called it, that "Damm Spot."

A memorial will be at 1 p.m. Saturday at St. Andrew United Methodist Church in Plano. He donated his remains to the Willed Body Program at UT Southwestern Medical Center at Dallas in hopes of continuing his fight against the tumor.

"If he decided to do something, he did it all the way," said his wife, Tyra Damm of Frisco. "He just invested everything, his whole self, into everything he did."

In January 2008, Mr. Damm learned he had a rapidly growing brain tumor that would take his life in three to six months without treatment. With radiation and chemotherapy, he could expect to live about 14 months.

"Steve and I decided we would have more time," Mrs. Damm said of the treatment decision. They decided to keep on living and squeeze in all they could with the time they had.

They chronicled the fight online at checkonsteve.blog spot.com, where friends and family shared the family's journey of hope, happy times and hardship.

There were outings with 8-year-old son Cooper and 4-year-old daughter Katie; medical treatments and emergency room visits; vacation getaways.

Blog readers shared the highs and lows – and the love story of Steve and Tyra.

"Now the most difficult part of a church service for me is when the choir sings," Mrs. Damm reflected on the blog in August. "I love their voices, but I can't help but miss seeing Steve in that friendly crowd, hearing his beautiful music."

In February, it became harder for Mr. Damm to get around.

He continued to work full time for Children's Medical Center until June 22, when a pulmonary embolism forced him to reduce his schedule.

"He would save up his strength to do one activity on the weekend," Mrs. Damm said.

Mr. Damm continued to work from his bed until a week ago, his wife said. She blogged that she was holding his hand when he died Monday morning.

Born in Lincoln, Neb., Mr. Damm moved with his family to Houston when he was a year old. He moved to Dallas as a child.

In 1987, he graduated from W.T. White High School in Dallas, where he played trumpet in the band and marched in the Macy's Thanksgiving Day Parade as a junior.

Mr. Damm followed a family tradition and received his bachelor's degree from the University of Michigan in 1991. He majored in English literature – but discovered his professional path while working part-time as a college student scooping ice cream at a Baskin-Robbins.

His boss there referred him to a medical clinic in Brenham, Texas, said Will Pry, a friend since high school.

The Damms met when Mr. Damm was visiting Mr. Pry at the University of North Texas. Both Mr. Pry and Mrs. Damm were working at the North Texas Daily.

The Damms married in 1994, and Mr. Damm began work on his MBA in health organization management at Texas Tech University. He graduated in 1997.

The couple then moved to Dallas, where Mrs. Damm started working for The Dallas Morning News and Mr. Damm became a health-management consultant for Arthur Andersen. He joined Children's in 2000.

At Children's, Mr. Damm was the first administrator for the medical center's Physicians for Children subsidiary, said fellow administrator Lori Nolen.

Mr. Damm started the Children's clinic near Bachman Lake – the first of four. The clinic now has more than 30,000 mostly low-income patient visits a year, Mrs. Nolen said.

"There are a lot of kids in Dallas who receive primary health care, and that's because of his work," she said.

Mrs. Damm said that her husband always took pride in being the man "behind-the-scenes" getting quality medical care to children.

Mr. Damm maintained his sense of humor throughout his illness, said Mr. Pry, the editor of Briefing, an edition of The Dallas Morning News.

"There was always laughter coming from his hospital room, even during some really dark times," he said.

Mr. Damm was an active member of Holy Covenant United Methodist Church in Carrollton, where he served as a trustee and was a tenor in the choir.

In addition to his wife and two children, Mr. Damm is survived by his parents, James and Elizabeth Damm of Dallas, and a brother, James Damm of Bacliff, Texas.

In lieu of flowers, donations may be made to Holy Covenant United Methodist Church in Carrollton. Scholarship gifts for the Damms' children may be sent to The Steve Damm Fund, First National Bank Southwest, P.O. Box 1746, Frisco, Texas 75034.

Steve's final day

Saturday night Steve wasn't feeling well, but he was certainly improved over Saturday afternoon.

When we woke at 5:30 a.m. Sunday, his congestion was much, much worse. His urine, which the day before looked like the perfect color, was suddenly clotted and brown. His throat was burning. His mouth and tongue were swollen. He felt miserable all over.

I spoke with the triage hospice nurse, who sent the on-call nurse to check on him.

When R, a nurse we really love, arrived, I knew from the look on her face that we were in trouble.

After I gave her a list of symptoms, she evaluated him and took me to the dining room to visit.

She explained that his body was shutting down. She thought he might have, at the most, seven days left.

A crisis plan was put in place immediately. We started liquid drugs for comfort and to ease breathing. Steve would require 24-hour nursing care.

All this time, Steve's breathing was increasingly difficult. The noises were terrifying.

Cooper and Katie were across the street with the Dubes for most of this activity. Our friend Gretchen was here. I called Jim and Betty (who called Uncle Jim), my sister Melane, Aunt Ami, Will, Julie, Liz, and Pastor Andy.

Susan, a friend from church, had already planned to serve communion at home. She, her husband and Sharon H. arrived for an abbreviated service.

The three from church, plus Jim, Betty and I surrounded Steve's bed. We sang and prayed and received communion. Susan gently put a few bread crumbs on Steve's tongue. She sprinkled white grape juice on his lips.

Cooper and Katie left to play at the Kniering house, giving us more time to take care of Steve and time for me to plan how to discuss the rapid changes with them.

We continued to give Steve morphine, which was helping with his breathing and agitation. He tried desperately to communicate, first trying to talk. I strained to understand him but couldn't. He tried to type but couldn't find the letters. Melane wrote the alphabet, and he pointed to letters to spell.

He said "I love you" and "thank you." I held his beautiful face in my hands and told him how very much I loved him and how so very many people loved him and that God loved him and that he was the perfect person for me.

Around the time the second nurse reported for duty at 2:30 p.m., he was starting to drift into a sleep-like state.

R, the first nurse, returned and told me that his symptoms were progressing much more rapidly than she had expected. We might have 24 or 48 hours left.

Cooper and Katie came home, and we waited for the hospice's music therapist and social worker to arrive. Pastor Andy was here, too.

I sat with our children on the sofa and told them that Daddy was very, very sick and that he was going to die soon.

Cooper cried out and bolted for his room.

Katie said, "I don't know why he's so sad. When Daddy dies, he'll still be in our hearts."

She asked, as she often does, what it looks like when you die. When I felt comfortable that she had the answers she needed, I found Cooper in his room.

The music therapist and Andy were with him. They had explained to him why I told him the news.

Cooper told me that he wanted to run away or be locked in a closet.

Before Pastor Andy left, we all gathered in the bedroom to hold hands and pray with Steve. Cooper was on Steve's left side. As Andy spoke aloud, Cooper bent over and sobbed. When we finished, he hid under my covers for a while.

Somewhere along the way I lost count of how many people came in our doors that afternoon and night.

Melane and Greg and Jim and Betty hurried over. Will arrived. Uncle Jim came in from Houston. Gretchen delayed her outgoing flight to Los Angeles. Ami, Sasha and Tara drove in from Austin. Melissa flew in from San Antonio. Walter and Jeannie appeared. Jessi arrived. Neighbors and friends streamed in and out. Food and drinks were delivered. We moved more chairs into the bedroom.

Steve couldn't talk back to us and his eyes were closed, but I just know he heard the laughter that filled the room all night long.

We were all devastated, of course, and there were many tears, but you just can't help but tell funny stories when you're talking about Steve.

At some point during the afternoon, I talked with Dr. M. She praised Steve's courage and will to live. She praised my care. She cried with me. She told me to hold his hand and deliver him to the angels.

I was snuggled next to my one true love, and I just couldn't bear to let go of his hand.

By midnight most everyone had found a place to sleep -- either here or at the Dubes. I stayed awake until about 1:30 a.m. and finally fell asleep. I woke at 2:30. Betty was up, too. She helped tuck me back in, and she went back to sleep in my bed.

I couldn't sleep. I couldn't shake the sense that the time was near.

I didn't say a word aloud, but I was talking to sweet Steve in my head. And I could hear him reply.

"It's OK to go now, sweetie," I would tell him, as I continued to clutch his right hand with my left hand. "You can let go."

And he would reply that he was ready. We did this again and again, in a special unspoken language.

His breathing was very shallow and slow. And then there was one loud breath. The hospice nurse, who was sitting in the corner of the room, hurried over and gave me a sad nod.

We woke Betty. And we sobbed.

In minutes, everyone in the house (except Cooper and Katie), plus Ami and Tara across the street, were in the room. In those first moments after Steve's death, we were all supporting one another. Steve's mom. My sister and her husband. Beloved aunt and cousin. My best girlfriend since eighth grade. The friend who introduced me to Steve. Then Steve's father and brother.

I waited until about 5:45 a.m. to wake Cooper. I didn't want to wait too much longer, fearing that as Steve's body changed in appearance, Cooper and Katie would be more frightened.

I told him that Daddy had passed away. I carried him to our bedroom, and he gave Steve's body a hug and a kiss. And again. And then he wanted to go back to bed.

I then woke Katie and gave her the news. She chose to snuggle in his bed, with me on one side and Steve's body on the other. She asked about his white skin and his stillness.

As we waited for the proclamation of death and the UT-SW staff to pick up Steve's body, I held his hand. I traced my fingers over his distinguished eyebrows over and over again. I told him again how much I love him, how I'll always love him, how I wished that we could have beaten that Damm Spot but that we all did the very best we could. I thanked him for giving me the two most amazing children.

In the silence, I kept hearing Steve sing to me. He was singing "Was There Life" by Pete Townshend. It was the first song at our wedding reception in 1994. I can't count the number of times we danced to that song in the kitchen or family room or Steve would just sing it to me out of the blue.

"Was there life before this love
Was there love before this girl I can see
Was there ever love for her before me"
...
You can count on me to stand and say
'Was there ever life before this wonderful day?' "

When Cooper woke again, Melane and I were concerned that maybe he had forgotten the events earlier. He was cheerful.

I asked if he remembered. He said yes.

"But it's OK, because Daddy believed in God and Jesus, so he's in heaven."

Memorial service

We'll remember and celebrate Steve's amazing life:

1 p.m. Saturday, Sept. 12
St. Andrew United Methodist Church, 5801 W. Plano Parkway, Plano

Reception immediately following at the church.

Children are welcome to attend the service. We will also have child care available. If you expect you'll use the nursery, please e-mail Mary Mitchell Trimble at mmtrimble@att.net by Thursday and indicate how many children and their ages.

In lieu of flowers, donations may be made to Holy Covenant United Methodist Church , 1901 E. Peters Colony, Carrollton, Texas 75007. Scholarship gifts for Cooper and Katie may be sent to The Steve Damm Fund, First National Bank Southwest, P.O. Box 1746, Frisco, Texas 75034.

Peace

Our amazing Steve took his final breath at 3:05 a.m.

We were holding hands.

Now he is rid of the Damm Spot. And his spirit -- his playful, creative, loving, warm and generous spirit -- is at peace.

A request

On behalf of Tyra, we ask that visitors not come into the house or ring the doorbell today so she can keep the household calm for Cooper and Katie. Visitors are welcome on the porch.

Thank you for your understanding,
Will

Holding Steve's hand

I have squeezed myself into Steve's tiny bed for most of the afternoon and evening. He has been surrounded by great friends and family, great laughter and love.

He is in a sleep-like state. He can hear us but hasn't been awake since mid-afternoon. He is being given morphine, atropine and Ativan as needed for comfort.

The first assessment today was that Steve would have at most seven days to live.

His symptoms progressed so rapidly that the later assessment gave us 24 to 72 hours.

This is the most heart-breaking (or, as Cooper would say, heart-shattering) experience. We are finding great comfort that he is more comfortable, though. He was really struggling this morning and early afternoon. Though his body is shutting down, his body is no longer restless and agitated.

There is so much to share, but I know that I need to try to close my eyes to sleep -- or at least allow my mind to rest.

I spoke with Dr. M today. She said that Steve has fought harder than any patient she's ever had. She said that for so long he has willed himself to live, overcoming challenges that seemed too big and too daunting.

She told me to hold his hand and, when he is ready, deliver him to the angels.

I've been holding his hand as often as I can ever since.

Praying for peace and comfort

Steve is rapidly declining. His respiratory system is failing. His kidneys are failing. He is horribly uncomfortable.

Hospice begins crisis care tonight at 8.

The goal is to provide him comfort.

Please pray for peace and comfort for our amazing Steve, who is appropriately wearing a Superman shirt today.

Congestion

Sometime last year, Hefina, a spiritual advisor and our friend, gave both Steve and me foot washings. She encouraged Steve to embrace the tumor and let it go.

Today he said, "I'm tired of embracing the tumor. I want it to go."

*****

Steve's chest rattled some throughout the night last night. After his morning/early afternoon nap he was very congested in his lungs and throat.

He had a breathing treatment, cough medicine and atropine drops (which help decrease secretions). He was more uncomfortable than usual and frightened to eat or drink because everything was causing him to cough more.

I asked the hospice triage nurse to send an on-call nurse out, just to listen and reassure us. The on-call nurse examined him and suggested that we add morphine drops to the drug regimen (morphine can also help decrease secretions) and increase the use of atropine for 24 hours. (Ideally he would just cough up the junk in his lungs, but his body is too weak.)

He improved within a couple of hours. He is still congested, but his condition is much better.

His spirits have been lifted, too, by sweet and funny cards, drawings and notes. Plus he's had many hugs and kisses on the top of his fuzzy head. Gretchen is in town for a couple of days -- that visit alone made his week. On top of that, in just the past couple of days he's seen Jim and Betty; Gretchen C.; the Woodbury family; the Spears family; Lori and Leti; Allison; Zena; Liz; and the Chitnis family.

He knows that he is surrounded by love, whether in the room or sent from states far away.

'I need to feel better'

Today I asked Steve if he needed anything.

"I need to feel better," he said.

That's the theme this week. He's feeling lousy. His hearing is worse. His speech is difficult. He's so very tired and napping more often. His Foley catheter is still causing trouble -- bladder spasms and occasional pain. His shortness of breath seems worse.

Your cards and notes have started arriving, and that makes him feel better. Snuggles with Cooper and Katie always help. Any sign of love offers comfort.

Katie the caregiver

Katie returned to preschool yesterday, this year attending four days a week. She insists that she's actually ready for kindergarten, reasoning that she "acts like a 5-year-old." (She may have excellent verbal skills, but she definitely acts like a 4-year-old.)

This weekend our friends the Browns were visiting. Leslie and Stephen were in our bedroom talking with Steve when Katie walked in with Delaney and Melana.

"See it right there," she said, pointing to Steve's head. "That's his crazy eye." She spoke as if she were giving a museum tour.

Last week she told me that Daddy has the kind of cancer that gets better because "we're all helping him feel better." She loves to sit next to him in his bed for meals. And when he coughs, she runs over to pat his chest gently and say, "Take it easy, Daddy."

She starts soccer practice this week -- her first time to play on a team. Her only other participatory soccer experience has been the Kick the Damm Spot event early this summer. Because of that, she's insistent that every goal kicked during her soccer season "will be to help Daddy feel better."

Visitors

Steve can't get out of the house -- or out of bed -- any longer, but plenty of friends are taking time to bring the outside world in. He loves visits, even though we have to keep them brief to conserve his energy.

Phone conversations aren't really an option -- he can't hear well and his voice isn't reliably strong enough for the phone.

If you'd like to visit with Steve in person, please send me an e-mail with a couple of potential days and times. He generally naps from about 1 to 4 p.m., so mornings or late afternoons are best. (And, of course, if you're ill or someone in your home is ill, we'll need to reschedule.)

If you can't make it to the house, please consider sending a card or note. Steve loves to read encouraging, comforting words and enjoys children's drawings.

You can send them to: 5704 Hidden Creek Lane, Frisco, Texas 75034.

'Weighing hope and reality'

This New York Times piece about Sen. Edward Kennedy's fight against brain cancer is an excellent explanation of the balance Steve has faced since January 2008.

Reading it stirs mixed emotions. We know how lucky we are that Steve has outlived the median expected life expectancy after diagnosis -- 15 months.

And yet there's this harsh reality:
“This remains just a dreadful tumor,” said Dr. Eugene S. Flamm, a neurosurgeon at Montefiore Medical Center in New York. Dr. Flamm, who was not involved with Mr. Kennedy’s treatment, added that when a patient developed glioblastoma, “there is not a hell of a lot you can do.”

And, though we've never questioned the treatment path for Steve's tumor, it is reassuring to read that Steve's treatment falls in line with what experts recommend.

Sweet gift

Today I received this beautiful chain with S and T charms, a gift in the mail from our friend Joy. Thank you, Joy! We miss you!

The week so far

Our neighbor two doors down passed away Sunday. Eddie was 42. He was diagnosed earlier this year with cancer.

He and Jenni were foster parents to Labradors. He was a top-notch runner. He was always smiling.

*****

Steve is having a rough week.

He had a slight fever last night, which resolved quickly with Tylenol. He's developed a rattly, raspy cough and has chest pain when he coughs or breathes in.

We are changing one of the two antibiotics he's been taking. And he'll start taking a cough medicine to help as needed.

He's having severe bladder spasm pain that isn't alleviated by the bladder spasm medicine, so he's taking pain medicine more often. You know Steve is in serious pain if he asks for something stronger than Tylenol.

One of the hospice nurses who was here this week speculates that his kidneys just aren't functioning well. That's why there's sediment in his urine -- the kidneys aren't able to filter waste as well as they used to.

He has very little hearing remaining in his left ear. He can still hear with his right ear, but if you talk to him, it's best to have eye contact and speak a little loudly.

*****

Our Steve is still in that declining body.

Last night, friend, neighbor and nurse extraordinaire Tisa came over to listen to Steve's lungs and offer some advice. She commented on how much knowledge Steve and I now have about medical issues.

In his halting, labored voice he said, "That and $4.50 will buy me a latte."

*****

Sen. Edward Kennedy passed away last night. He, too, had an incurable brain tumor.

This article talks about quality of life in brain tumor patients as well as the role of Avastin and Temodar in extending life.

*****

When Cooper learned of Eddie's death, he and I had a long, quiet talk.

"Eddie had cancer, and he died. Daddy has cancer, and I'm afraid he's going to D-I-E," he said.

With all my courage and a huge lump in my throat, I pulled him closer and told him: "Cooper, we can't fix Daddy's cancer. He is going to die. I don't know when. Only God knows."

Cooper told me that he would be miserable and cry every day for the rest of his life without Daddy.

We held each other and cried together.

Third grade

Cooper started third grade today!

It was a bittersweet morning. It's the first time that just three of us walked to the first day of school. But Steve gave Cooper a big kiss and smile before we left.

Fragile

The best word to describe our household right now is fragile.

Steve's skin is fragile. So many months of Decadron plus the recent continuous use of blood thinners have thinned his skin terribly and made him much more susceptible to bruising.

Wednesday morning he suffered cuts on his backside, caused by seemingly innocuous contact with the bedside commode. I spent the rest of the day worried about too much pressure on the wound, so Steve was especially uncomfortable. He was placed in various positions with all kinds of pillows for support. None of them were ideal.

The wounds look much better today.

Steve's urinary function is fragile. (Sorry if these details are too much for some readers. It's just part of what we're dealing with.) Yesterday he had very little output. There was still significant blood in the urine.

I was worried that he had another clogged catheter, so I called hospice at 10 p.m., and a nurse was here by 11. She was able to flush the line with saline and get return right away, indicating that there was no clog.

When we woke this morning, there was still no additional urine. But then within two hours there was about 1,200 milliliters without any evidence of blood. Excellent!

And now he's gone about five hours with absolutely no output, despite plenty of fluids.

Steve's senses are fragile. His hearing is significantly reduced this week. His ability to speak is almost gone. His vision is changing for the worse.

All of our emotions are fragile.

Cooper and Katie have both been more verbal about how they're feeling. We've talked a lot about anger and sadness and how to express those emotions in healthy ways.

(Actually, Cooper screamed yesterday: "I'm not angry or sad! I'm mad! I'm mad that mean cancer cells marched right into Daddy's brain and nothing could stop them!")

But they're 8 and 4, and sometimes the anger and sadness is directed at people. Little hiccups or aggravations can prompt major meltdowns.

I'm more acutely feeling the pull of so many needs. The most difficult time of the day is early morning, when the hospice aide is here. Steve requires help from the aide and me. Cooper and Katie also need me at the same time -- for breakfast, getting dressed, moderating disagreements.

Despite our fragility, we're somehow still strong.

Steve's body may not be totally cooperating, but he's not giving up. He's still doing leg exercises and stretches. He uses his right side to type, eat, sketch, hold his e-book to read.

He's retained his wit and intelligence. (If you're one of his Facebook friends you have no doubt at least giggled by some of his updates this week.)

Cooper and Katie are going through all the emotions you'd expect of two young children affected by cancer. I am so proud of how they're (mostly) able to articulate their feelings.

They are sweet, loving children with over-sized personalities. They continue to adapt to constant changes and challenges. They are receiving support from a play therapist and from our hospice agency.

I wake up every day sincerely eager to get out of bed and take care of Steve, Cooper and Katie. (I admittedly was eager to get out this morning because my twin bed was crowded with four creatures -- me, Cooper, Katie and furry Margie. Margie slept with me all night; Cooper joined me when the storm began; Katie crowded in just before my alarm went off.)

We never feel alone thanks to the consistent help from family and friends. You all have made caring for the Damm family a group effort.

Arik and Mia's adventure

Arik and Mia are the Dallas couple raising awareness and money for cancer research by biking down the West Coast -- more than 1,800 miles.

They are riding in memory of and honor of people with cancer, including Steve. They're wearing jerseys covered with the names of honored folks. The shirt above includes Steve Damm and the dearly missed Kathleen Baskin-Ball.

I've been following their adventures online, and you can, too, by clicking here.

Prayers

I baked cookies Monday night and invited Jackie over to sample them.

As we visited, she talked about the thousands of people praying for Steve.

He's been on her church prayer list from the beginning of this cancer journey. She's been taking graduate school classes at Dallas Baptist University, and she always lifts his name in prayer during class.

We were both overwhelmed with emotion thinking of so many people praying for Steve and our family -- people we will never meet but who are so essential to Steve's strength, health and peace.

I can't begin to keep track of the many prayer lists and chains that include Steve. When Steve displays superhuman strength or I summon patience I didn't think I had, I know we are relying on strength, patience and grace gifted by God.

Yesterday I received an e-mail from Sharon, who is spending two weeks in Europe with her aunt and cousin.

During my visit to the Cathedral of Canterbury this morning, I found a little chapel where you write a prayer request and it's read aloud at the next morning's daily communion service. So my request said: Please ask that God's grace and comfort be with Steve, Tyra, Cooper and Katie Damm of Frisco, Texas, USA.

We are incredibly blessed to receive so many prayers and good wishes. Thank you for continuing to pray with us and for us.

PICC line and ER

The new hospice RN visited this morning because I was worried about blood in Steve's catheter line.

Because Steve doesn't have any pain related to the catheter, she thinks the blood is simply from irritation and will resolve in a day or two.

While she was here, she was going to change the PICC line dressing on his right arm. Before that, she tried to flush the line with saline.

She couldn't get the line to flush. She said it wouldn't budge. We've never had trouble with the line since it was inserted in January, so I didn't know what we'd do next.

The nurse wasn't sure, either, so she called a fellow nurse who said the only options were to remove the line or to go to the ER to get additional help in a more controlled environment.

We talked about the choices for a few minutes. We're still not willing to give up the line, as long as it stays free of infection, knowing that if Steve needs IV therapy for an infection or needs blood drawn quickly, the line is our best bet. It's just too difficult to access his veins with a needle.

After we'd agreed to keep the line, we needed a way to get to the hospital. Steve is no longer able to safely get in and out of a car. An ambulance is the only option. But I didn't want to call 911 -- we didn't have a true emergency.

Instead, I called our local fire station. The guys there know us pretty well by now. I explained our situation, and they agreed to pick up Steve at 1 p.m. and take him to Plano Presbyterian.

I then called Betty, who drove up from North Dallas to take care of Cooper and Katie. Teresa, Katy and David from church had already planned to spend the afternoon playing at our house, so they were here, too.

Steve was seen quickly in the ER. And the nurse was able to flush his line immediately.

Great news! (Though I sure wish we had known that before we forced Steve to endure an afternoon going to and from the ER.)

Then our only trouble was how to get home. The Frisco paramedics couldn't take Steve home -- they can only deliver you to the ER. So we hired a private ambulance service and waited for more than two hours.

We were home just before 5, thankful for a happy ending (and happy to be home in time for a visit from Jessica, Steve and baby Sebastian).

Steve has no new symptoms this week -- just variations of the regular ones. His voice is almost nonexistent today, apparently a combination of extreme shortness of breath and weakened vocal chords.

Whenever there's a new medical team member -- paramedic, nurse, doctor -- looking after Steve, I'm quick to point out that he's unable to talk well but that he understands everything. I don't want him to feel excluded from decisions or conversations even if I have to speak for him most of the time.

Drama, Part I

Steve tells the story better than I do, but I'll try.

During his senior year at W.T. White, he tried out for a play for the first time. He was named the understudy to the actor playing Van Helsing in Dracula.

He showed up at rehearsals but didn't really participate -- he just watched.

About three days before opening night, the student playing Van Helsing was disqualified because he was failing a class. (This was in the early days of no pass, no play.)

So, Steve became Van Helsing. He didn't know any lines or blocking.

He stayed up all night the night before the first show to memorize his lines and develop a German accent. (This is when his German language classes really came in handy.)

Steve had tall hair that had to be shellacked down for the role of Van Helsing, his friend Shawn remembers.

By all accounts, he was a hit.

Kent, Shawn & Steve

The drama teacher asked him to stick around for the year.

Steve got the lead in the one-act play White performed that year -- Robert Falcon Scott in Terra Nova. He was named best actor at the UIL area or region contest (he can't remember which).

Far right: Kent, Steve & Shawn

Later that year, he played Buffalo Bill in Annie Get Your Gun.

Shawn (Whalen) Shinn, one of Steve's high school friends, just sent a fun care package of photos from those days. Cooper and Katie loved seeing Daddy from high school, dressed up in so many ways -- even as a cheerleader for some kind of spirit day.

Stacey, Steve, Shawn & Trisha

Laughter

Steve and I both love the television show The Office -- the British and American versions.

My favorite American episode is "The Injury," in which Michael burns his foot on a George Foreman grill. If I ever need a quick pick-me-up, I just have to watch the opening minutes of that episode -- guaranteed laughter.

Here is some of the dialogue.

Michael: Okay, Buhh! I burned my foot. Very badly on my Foreman grill and I now need someone to come and bring me into work.

Jim: You burned YOUR foot on a Foreman Grill?

Michael: I enjoy having breakfast in bed. I like waking up to the smell of bacon. Sue me. And since I don't have a butler, I have to do it myself. So, most nights before I go to bed, I will lay six strips of bacon out on my George Foreman grill. Then I go to sleep. When I wake up, I plug in the grill. I go back to sleep again. Then I wake up to the smell of crackling bacon. It is delicious, it's good for me. It's a perfect way to start the day. Today I got up, I stepped onto the grill and it clamped down on my foot, that's it. I don't see what's so hard to believe about that.

You can go here to see the clip.

Steve, knowing how much I love the episode, recently ordered me my own Foreman grill. On the card:

Till you get your butler. Love, Steve

So now whenever I need another pick-me-up, I just look at the card or grill a sandwich for the kids. Isn't Steve the best?!

Catheter

Yesterday evening, around 8 p.m., I noticed that Steve's urine output (as seen in his Foley catheter bag) was unusually low.

I talked with Dr. M about it. She said to watch it overnight and to get Steve to drink more liquids, in case he was dehydrated.

So Steve drank a lot of water before bedtime -- on top of all the water and juice he'd had throughout the day.

When I went to bed at 11:30 p.m., I was worried to see that there was no more output in three and a half hours.

At midnight, Steve woke up in horrible pain at the catheter insertion site.

I called the hospice answering service. Then I called Cyndi, a friend and RN, who was aware of Steve's condition earlier in the night. Her over-the-phone diagnosis was a clogged catheter. We decided that a pain pill was the best I could offer him until help arrived.

Then the hospice triage nurse called, and I told him the trouble. He called the nearest on-call nurse.

She arrived around 12:45 a.m. She removed the old catheter (which indeed was clogged with sediment) and inserted a new one, all while Steve was in excruciating pain -- a 9 on a scale of 0-10.

By the time she left around 1:30 a.m., his pain had dropped to about a 4.

Today he is pain free but exhausted from the ordeal and lack of sleep.

We are thankful that the problem, though very painful, was relatively easy to solve. And now we know to ask for the line to be changed every two weeks instead of the more standard in-home guideline of every four weeks.

Photos

My Briefing column today (with thanks, as always, to super editor Will) ...

For now, it's tough to focus on photos of happier times

My lifelong love of photographs is waning. I don't expect it's a permanent condition, but I can't ignore how they make me feel these days.

When I was growing up, one of the most special nights of the year was when my family would gather in my grandparents' living room for the slideshow. We would carry in boxes of slides from the garage, set up the projection screen and settle in for hours of entertainment.

It was at their house that I would also pore over photo albums meticulously compiled by my grandmother. I loved the images from the '40s through '60s as much as those that included my sister and me.

The details from those photos are permanent fixtures in my memory. The hand-tinted cardigan sweater Gramma wore in her senior high portrait. Drought-defying roses blooming in their West Texas backyard. The coordinating robes family members wore one Christmas morning.

My adult life has been documented with countless photos, and very few of them are catalogued with Gramma's precision. Some are in albums, some in photo boxes, some still in the envelopes from the store.

We haven't used proper film in years, and most every photo since 2005 is trapped in one of four hard drives in the house.

The computer in our bedroom has a screensaver with a 21st-century version of Grandpa's slideshow. All day long, photos randomly appear on the monitor.

Steve holding Katie in the minutes after she was born. Cooper about to kick off at his first soccer game. The three of them opening gifts on Christmas morning.

These days, I keep the monitor dark. I just can't bear to see images of "old Steve."

Steve is under care of hospice. Blood clots in his lungs have forced us to discontinue the chemotherapy that fights the inoperable tumor in his brain stem. He lives at home, spending almost every moment of every day in a hospital-style bed.

He can't hold Katie or attend a soccer game or even sit up unassisted.

In the first year after his diagnosis, though, Steve was mobile. Back then, when I looked at the older photos of Steve, I saw them as a sign of hope. One of my many prayers was that Steve would return to his active lifestyle and that the images from the months and years before would not serve as history but as a promise of what would come again.

When I look at the photos now, I feel a great well filling inside. I cherish the memories of our time before cancer, but I have trouble seeing the evidence. The not-so-distant past is just too painful as we focus on the difficult present and scary future.

Last weekend, two new hospice aides were in our home to help with his morning routine. They admired framed photos of Steve with various family members on display in our bathroom and bedroom.

"Oh, he was handsome," one said to the other.

I was quick to reply, "Yes, he is handsome."

For one, he's still here, in the room. A bright, witty, compassionate soul trapped in a 40-year-old body that refuses to function well.

Second, his face may be swollen from long-term use of steroids that control his neurological symptoms, but he is still handsome. He has the same striking eyebrows and strong nose and playful eyes today as he did two years ago.

His smile, now a little lopsided, still melts my heart.

Most of all, his beautiful spirit still shines through. That's the image I'm most focused on now. Those other old images, as beloved as they are, will have to wait.

Tyra Damm is a Briefing columnist. E-mail her at tyradamm@gmail.com.

Updates

New nurse

The new hospice nurse visited today. The experience was wonderful.

She was warm, comfortable with all four of us, friendly and not overbearing. She definitely has opinions, but she also seems open to ours.

We weren't scolded for Steve's PICC line (which we've chosen to keep for now) or questioned suspiciously about our lack of a DNR (which is an ongoing discussion).

We both expect the hospice experience to be much more pleasant with this change. (And I'm thankful for all the support from family, friends and blog readers.)

Steve's week so far

Kisses from Cooper and Katie

Steve isn't feeling well this week. There's not a big symptom he can point to or pain to complain about. He just feels lousy all over.

We did have a scare Monday night.

I woke him up at 8 p.m. from a long afternoon nap so that he could take medicine and eat dinner.

He had a slight fever, felt nauseous, threw up a little and had awful congestion and a headache.

I called all of Dr. M's phone numbers (she called once, long ago, from her home, and you better believe I saved that number), and she called back in 10 minutes.

We reviewed his symptoms and the possibility that he was about to return to the hospital.

We decided then to:

• Give him Zofran for nausea.
• Increase his oxygen to 6 liters, up from 5.
• Start a new antibiotic, in addition to the one he's already on, in case there is still an underlying infection.
• Change breathing treatments to a schedule, rather than as needed.
• Go back to 16 mg of Decadron, after dropping for three days to 12 mg.

Within two hours, he was much better. I think part of the problem was that he was dehydrated (based on the output in his catheter bag) and that drinking more water helped some. Steve did say later that night that he had been afraid to drink much throughout the day because of the coughing it was provoking -- he desperately wants to avoid aspiration.

Tuesday was a better day. Today was rough.

He is exhausted. He misses being outdoors. He is short of breath all the time. He can barely talk. He says he feels helpless.

And you and I can't do anything to fix it. So I hold his hand and cover his face with kisses and rub the hair returning to his head and tell him I love him.

Katie decided to eat dinner right next to Daddy last night.

Natalie
Our friend Natalie flew in from Florida this weekend and spent a few days with us, helping with everything and everyone around the house.

She left her own family of three children and husband Ronnie (a friend and former Morning News colleague) to help. She left their youngest child, Mandy, who is also battling brain tumors.

Mandy was diagnosed with bilateral optic gliomas one month after Steve's glioblastoma diagnosis. She's endured IV chemotherapy every week since.

Of all of our amazing, wonderful, fabulous friends, Natalie "gets" what we're going through more than most. (It's a club for which we emphatically wish we were ineligible.)

You might expect me to write something like, "I can't believe that she would give her own time away from her family and her daughter fighting cancer to help others ..." But that would be insincere.

She's exactly the kind of person you would expect to fly across the country to wash our dishes, sort through insurance Explanations of Benefits, pick up treats at Starbucks, fold our clothes, clean out closets, grocery shop, help with Steve transfers and more.

Natalie, Cooper and Katie

Like a fairy tale
Being on the receiving end of so much selflessness and compassion is humbling. Our family experiences it all day, every day.

Take today. Betty spent the afternoon here with Cooper and Katie so that I could edit on deadline. Kelly brought dinner and left with a basket of towels to wash. Layne and Martin fixed a problem in the yard. Liz helped with nighttime chores so I could grocery shop (something I actually miss and like to do on my own occasionally).

When Steve was so ill Monday night and I was on the phone with Dr. M, I was supposed to be walking with friends. When Allison, Kris and Liz showed up on the front porch at the appointed time, I just waved them in the house.

They got to work right away. Allison read with Cooper, Liz read with Katie, and Kris cleaned the kitchen.

Allison later compared the experience to Cinderella (me) and the mice (them). I laughed but suggested that they should at least be considered fairy godmothers.

We are surrounded by so many fairy godmothers and godfathers -- family members and friends who reflect light, who embody goodness, who lavishly share love.

New hospice nurse

I do not like confrontation. I do not like to think I'm hurting someone's feelings. I don't like to create drama.

But I am Steve's advocate for the best possible care.

So today I gathered the courage to ask our hospice agency to assign a new RN to Steve.

"Tom," Steve's nurse since we started hospice service in early July, has been antagonistic at times. For weeks I have tried to ignore his bedside manner and focus on the competent care he was providing Steve.

After discussing the situation with Steve, Dr. M and others, I decided that we could no longer overlook Tom's attitude and demeanor. He's just not a good fit for our family right now.

Twice he told me that Steve's body could be riddled with tumors. Both times I told him that glioblastomas don't metastasize outside the brain or spinal column. (The second time I was more forceful than the first.) He speculated that congestive heart failure had caused Steve's swollen arm -- even though he'd seen no vital signs or EKG results. He actually hadn't even examined Steve when he threw out heart failure.

There were many other moments during our time together when I would think, "He's making this process more difficult than it already is." There's enough difficult about Steve's situation now -- we don't need layers of stress needlessly added.

I don't want this part of the journey to be muddled with a personality that doesn't fit into our home. I want Steve to be treated with nothing but dignity. I want him to be surrounded by all the love and positive energy and warmth and compassion that he deserves.

The hospice agency's social worker and clinical director were very helpful and understanding when I requested the change. I expect we'll meet the new nurse in the next couple of days.

Sweet Stevie D

After Steve woke from a long nap today, he stared at me with teary eyes and sleepily whispered, "I like to look at you. You're my angel."

Priorities and Steve's voice

Steve enjoyed a visit yesterday with Debbie, our church's music minister and choir director. Steve was a choir member until December 2007, when symptoms prevented him from continuing. (His voice was changing because of the tumor we didn't yet know was a tumor.)

They chatted for more than an hour. I was in and out of the room, and when I was in the room, I was often working.

I did hear Steve talking to Debbie about priorities -- how it's important to realize life's priorities and to make adjustments while you can.

In one of Steve's roles with this current employer, he worked brutal hours. He'd leave Frisco around 5 a.m. many days to make a 6 a.m. meeting. He'd work all day and then attend a late afternoon meeting. He'd get home around 7 or 8 p.m.

On Wednesday nights, he'd get home even later, because he had choir practice. He would leave before anyone was awake and come home long after Cooper and Katie were asleep.

He doesn't regret that he was in choir. He loves music, loves the fellowship, loves being a part of worship.

He doesn't regret his job. He loves to work, loves to solve problems, loves to be around people helping children feel better.

He does wish he could have arranged Wednesdays differently. Maybe found a way to reschedule the early meeting or miss it some weeks. Or find a way to come home between work and choir practice.

There were some Sundays back then, I admit, when I would wish that Steve was sitting next to me, Cooper and Katie in the sanctuary, instead of sitting in the choir loft. He would often leave the house earlier than us, to arrive in time for practice or for the early service.

Many Sundays I was on my own to wrangle two children into church clothes and to corral them during services.

But when I would see Steve in that choir loft, singing with great enthusiasm, any frustration would just melt away. And my heart warmed every time tiny Katie would wave and say, "Hi, Daddy!" across the sanctuary -- even at the most inopportune times -- or Cooper would run up to the loft to give his Daddy a big hug after children's time.

Now the most difficult part of a church service for me is when the choir sings. I love their voices, but I can't help but miss seeing Steve in that friendly crowd, hearing his beautiful music.

I am wistful for those days when there were three of us in the pews and one of us in the choir.

I am thankful that Steve still has a voice -- weak and faltering as it is -- so that he can continue to share his stories, advice and his love for others.

Since we've been home

Steve's condition
Steve is continuing to catch up on rest. It's definitely more peaceful at home, but he's also adjusting to a huge increase in Decadron, the steroid he takes to help control swelling and symptoms of the tumor.

Dr. V, the attending we saw Saturday through Monday, wanted to try 16 mg a day, up from 8 mg, to see if it helps with Steve's weakness. The only difference we've noticed so far is stronger voice (a wonderful thing to hear) and some difficulty sleeping.

He did sleep well last night, though, and had a nap this morning.

His arm swelled significantly again yesterday; today it's more normal though still puffy. Yesterday our amazing massage therapist worked on him and his arm for about an hour. Steve was fast asleep when Trish finished.

Transitions from the bed to the bedside commode aren't smooth. He requires two people at all times, and even then I'm nervous. The hospice aide is a great help, though, and she and I make a good team.

I've also hired a sitter (and former nursing home aide) to help me three nights a week. I won't be able to take off while she's here, but she will provide consistent help and give me some time to focus on Cooper and Katie at night -- especially important now that school is about to begin again. The sitter fees are an out-of-pocket expense, which we'll able to pay for through the generosity of all the Kick the Damm Spot donors.

Oxygen
Steve receives a steady supply of oxygen from an oxygen concentrator. It's supplied through a vendor that works with our hospice agency.

A light came on this week indicating that the oxygen wasn't pure enough. So late yesterday, the vendor delivered a new one and said the old one had a cracked cylinder.

About two hours after using the new one, an awful high-pitched beeping sound began, and a red alert light was on.

I turned it off, let it rest and turned it on again. Thirty minutes later, the beeping began again.

So I turned it off and hooked Steve up to one of the backup tanks -- great for travel or emergencies but not ideal for a night of restful sleep. He's on 5 liters, which empties a tank in about two hours.

I called the vendor for help. An on-call driver returned the call. He sounded sleepy. I described the problem. Then he sounded sleepy and grumpy.

I told him that I didn't want to have to wake up every two hours to switch the tanks. He assured me that one tank would last six to eight hours. I told him that, in my experience, that wasn't accurate.

He sighed. He was quiet. Then he agreed to drive a new machine out.

After I hung up, the supervisor called to check on the status. I told him the driver would bring a new machine, but that he wasn't happy about it.

The supervisor said he'd call someone else, who lived closer, and apologized for the rude customer service.

By 11 p.m., a new concentrator was delivered by a cheerful driver. The machine works really well.

More guests
Longtime friend Matthew, who currently lives in Florida, spent last night at the house. He's on a visiting tour, catching up with family and us before school starts. (He's a newspaper-reporter-turned-guidance-counselor.)

Steve and Matthew this morning

Cooper and Katie treat Matthew like a jungle gym, and he never seems to mind. So he spent much of the visit wrestling with Cooper and giving piggy-back rides to Katie.

Steve is really enjoying this string of visitors, and another is on her way! Natalie, another friend now in Florida, is leaving her family for a few days to spend time with us and help around the house.

Happiness is ...

... seeing Katie painted as a Katie-fish (courtesy of the talented Aunt Melane).

... seeing Cooper make new friends and sharing Pokemon cards.

... seeing Steve reunited with fraternity brothers (Norm and Cory).

Home!

We're home. Updates to come.

Waiting

We're waiting on the team to round to let us know if Steve can go home today.

Steve's arm is almost back to normal. It's still a little puffy, but you can see evidence of bones. No one knows the cause, but either the IV antibiotics or the passage of time made it better.

Otherwise, he's stable. He's still short of breath, but that's not a symptom we expect to disappear soon. He's still very weak physically, but that's not going to get fixed while he's here.

Even though we're waiting, the day is passing quickly thanks to Cory, one of Steve's college friends, who is in from Chicago for the day. They are fraternity brothers and were roommates in the ATO house their junior year. They worked together at Baskin-Robbins, took road trips to see the Northern Pikes, "studied" together.

3:50 p.m. update: The medical team gave Steve the OK to go home. We're now waiting for discharge papers and logistical details.

And now Norm, another ATO brother in town from Philly, has just stopped in. Steve is showing off the one-armed Thriller. Or rather one-l'armed Thriller.

Tweets

I'm sleepy and would rather curl up on the recliner in Steve's room than write tonight. So I'm going to be a little lazy and give you some Tweets from my Twitter account over the past few days.

From today:
I look forward to meeting some of Steve's U of Michigan ATO brothers. As many as three will be in Dallas tomorrow to visit.

Steve's arm is still swollen but better (thanks to meds?). Other symptoms the same. We're cautiously optimistic that we'll be home Monday.

From Saturday:
Steve's charge nurse just recognized me. She reads all of my columns & says she loves them. I've never been recognized by a stranger before!

When Steve calls me his "sweetheart-a-muffin," even in a tired, raspy whisper, my heart melts. Semi-related: I really hate cancer.

Starbucks would make lots of money -- from me alone -- if it set up shop at St. Paul.

The maximum time to sleep on one of these recliner "beds" seems to be 5 hours.

From Friday:
I am back at the hospital after a delightful dinner at S&D Oyster with Liz & Kris. I am blessed.

Finally! Doctors were here. They are pleased with how Steve looks & sounds. Maybe he'll go home Monday?

I'm beginning to wonder if the hem/onc team forgot about us, way back here at the end of the hall. I asked the RN to tackle the attending.

We are still waiting for doctors to round. They've never been as late as after noon.

From Thursday:
I'm missing Cooper & Katie and laughing about the latest Katie-ism: hibiscuits instead of hibiscus.

The concept of Fruit2Day puzzles me. "A New Way to Eat Fruit." Honestly, how hard is it to eat the real thing?

I am working on returning phone messages. There are 18 of them, so it may take a while.

Our DMN friends are the best! I'm enjoying lunch delivered by Nicole.

Steve is napping after being wheeled away & back for chest X-ray. I'm wide awake thanks to latte delivery from Layne.

"An Officer and a Gentleman" is on. I probably haven't seen it since 1987, but all the dialogue is coming back to me.

Perhaps we got four hours of sleep? The first night in the hospital is always the most interrupted.

Swollen arm

Steve's left arm swelled suddenly this afternoon. In the past few months it's become scrawny from lack of use. Today it was puffy and huge.

Steve said it looks like he has a leg for an arm. So we've started calling it his l'arm.

The nurse paged the resident, who ordered a sonogram to check for a blood clot.

And Steve and I giggled. Because, really, how many more clots or other problems could he endure? Laughing seemed to be the best response.

So a transport tech wheeled Steve in his bed to the second floor, where a radiology tech checked his neck and arm.

I studied the imaging and scrutinized for clues. I was a clueless.

A few minutes ago, the night nurse told us that the report shows no clot. Whew!

So what could be causing the sudden swelling? The next guess is an infection. So Steve is back on an IV antibiotic. I don't know yet how many doses he'll get.

Early this afternoon we visited with the new team on call. Dr. V wants to be sure that we're comfortable going home and have everything in place before we leave.

Now I need to explain our on again, off again relationship with hospice.

When we decided to head to the emergency room and consent to treatment Wednesday, we were also deciding to discharge from hospice.

The idea of hospice is to make patients comfortable until they pass away. Hospice does not provide "aggressive treatment." Going to the ER, getting IV drugs and being admitted to in-patient care is considered aggressive.

(When Steve is enrolled in hospice, our insurance company pays a daily rate to the hospice group. So any care provided during Steve's enrollment time must be paid for by hospice. Hospice doesn't want to pay for hospital visits.)

Our social worker met us in the ER on Wednesday afternoon, and I signed papers that discharged Steve, with the understanding that we would re-enroll upon release from the hospital.

After we learned today that Steve is ready to go home when we are, I spent some time on the phone with our hospice social worker.

The current plan is for a hospice nurse to visit Steve in the hospital tomorrow to evaluate for admission to hospice. (They have to do this every time we request service again.)

And then by Monday, assuming that Steve is stable (and the whole l'arm thing is taken care of), we should be able to go home with hospice re-instated.

Transition

Steve made the transition today from three IV antibiotics to one oral antibiotic. He is also finished with IV fluids, and his oxygen rate has been lowered with success.

The blood cultures never grew anything, so we don't know exactly what we're fighting. The oral antibiotic covers a lot of germs, though.

Yesterday's X-ray doesn't look so bad. It shows scarring in the lower lungs but no big, hard-to-fight infiltrates.

The attending hematologist/oncologist, Dr. A, says that he thinks Steve could go home Monday. Dr. A won't be making that decision, though, because tomorrow is a new month, which means a new team rotates in.

So sometime Saturday we'll meet the new team and new attending, and they'll make the decision.

As much as I would like Steve home (with our Cooper and Katie -- oh, how we miss them!), I am thankful that we have a little more time here. We have both noticed that his shortness of breath is a little worse today than yesterday. He's having a little more difficulty talking, too. Still, he is so much better than when he arrived in the ER on Wednesday.

I'm hoping he can regain some physical strength -- at least to get him back to his level of Monday or Tuesday.

When I transfer him from one surface to another, he is usually able to help a great deal with his right side. He's lost some of that this week, plus his left side seems even more "dead" than usual. While we've been in the hospital, he's required two people for transfers.

We had a big switcheroo tonight. Sharon left the Morning News newsroom to take care of Cooper and Katie at Jim and Betty's house. Jim and Betty came to the hospital to spend time with Steve. And I went out with Liz and Kris for a lovely meal at S&D Oyster Co.

It is difficult for me to be out on a Friday night without my favorite date. But we brought Steve back some bread pudding with whiskey sauce. And now I get to spend another night in his hospital room, falling asleep to the sounds of him breathing (even snoring), giving thanks for his beautiful spirit.

Two advantages

At least two advantages to being at St. Paul:

1. We've been here so frequently that most of the faces are familiar. When I walk through the halls and see a nurse who Steve has had before, they always light up and ask about Steve. Yesterday the speech therapist from our last visit just popped in because she saw his name on the board and wanted to say hi.

Those moments make these visits more bearable.

2. The hospital bed here is wider than the one at home, which allows room for me to cuddle with Steve. At home there's barely room for Cooper or Katie to sidle up for a hug. But here I can pull Steve over to one side of the bed (using the draw sheet) and then climb in on the other side and wrap my arms around my sweetheart.

Morning update

The first night in the hospital is always the most interrupted.

Steve's prescriptions didn't arrive until midnight. Respiratory came sometime after to give him a breathing treatment. More blood was drawn. More meds at 6 a.m., when a really loud thunderstorm was beating against our window.

I think we got about four hours of pieced-together sleep each. Afternoon naps are definitely in order.

Steve seems about the same this morning as late last night -- less congestion, still short of breath but not as bad, able to talk (not long discussions, mind you, but a sentence is great!).

The internist who saw Steve in the ER yesterday just visited, and she was pleased with how much better he looks and sounds. And the respiratory therapist who also saw him in the ER remarked on Steve's improvement.

(Steve must have deteriorated quickly in the ambulance yesterday, on the trip from home to the hospital, because the respiratory therapist said everyone in the ER was prepared for a severe case.)

We'll now wait for cultures to come back. That will tell us what kind of pneumonia or infection Steve has and what specific drugs he needs. Until then, he'll continue on the broad-spectrum antibiotics.

We'll also pray for no other complications and the ability to return home the moment he's stable and ready.

In a room

Around 8:45 p.m. Steve was in a real hospital bed in a real hospital room. A few minutes later he was eating dinner (his first bite of food since breakfast) delivered by Sharon.

We're now waiting on the night RN to go over Steve's history and give him his nighttime meds. And then -- sleep!

The high dose of antibiotics seems to have had a positive effect. Steve has been able to clearly speak a complete sentence for the first time in about five days. He seems more alert as well and more Steve-like overall.

We look forward to more improvement tomorrow!

In the ER

Steve is at the St. Paul ER. He's being treated for probable pneumonia, most likely due to aspiration.

He started spiking a fever today. He was considerably weaker today than yesterday. The hospice nurse, who was visiting today to change his PICC line dressing, heard crackles in his lungs.

He called Dr. M, who recommended he be seen right away. I called 911 and then explained to Katie, who was home with us, that paramedics and firefighters would be coming soon. (I'll have to write about that experience later.)

The Frisco paramedics took care of him and brought him to St. Paul. I stayed with Katie until Betty and Cooper could arrive. (Cooper is in chess camp this week, at a school near Grandma and Papa.)

Sharon met Steve at the hospital and helped to take good care of him.

An X-ray here in the ER shows some trouble in the upper right lung. That, combined with his other symptoms, leads the doctors to believe that he has pneumonia.

He's receiving IV fluid and three strong IV antibiotics -- one after the other. We'll be heading to an upstairs room for admission sometime this afternoon.

As you pray for Steve and the medical team, please also include Cooper and Katie in your prayers today and the coming days. It was especially difficult to leave Cooper this afternoon, and I know they both are sad about Steve being gone again.

5:45 p.m. update: We're still waiting on a hospital room. Steve is sleeping. His congestion sounds awful, but his temperature seems to have dropped.

Controlled fall

Steve's been struggling with increased weakness all over, shallow breathing, shallow coughing and weak voice this weekend.

This morning when it was time to help him walk (with his walker) from the bed to the bathroom, we had some trouble. It took him more tries than usual to stand up from the bed. The walk was slow and unsure. I had to provide more support than normal and move his left foot and leg the entire journey.

On the walk back to the bedroom, Steve's walker got too far ahead of his body. He didn't feel stable and said he needed to sit down. Well, I knew that that wasn't a great idea, but there was no arguing with his body, which was slowly moving to the floor.

I helped guide him to the floor and made him as comfortable as possible on the half tile, half carpeted area. Then we thought about what to do next.

There was no way I was going to be able to lift him from the floor myself, and there was no way he was going to be able to rise on his own. So I started making phone calls to as many of our nearby guy friends as possible.

Jason answered the call and scooped up Steve with seemingly little effort. I grabbed his feet, and we carried him to bed, where he's been ever since.

I spoke with D, our hospice social worker, to let him know about the controlled fall and to get advice.

It was a difficult conversation.

You may remember that D visited us just yesterday. He told me on the phone today that he is concerned with the weakness he sees in Steve compared with two weeks ago.

He said that, based on his experience, we've started a decline that isn't reversible. (D has been with our hospice group for about six months. Before this job, he was a social worker at UT-SW and worked directly with Dr. M and her patients.)

Steve is in bed most of the day. This is out of necessity. He's not stable enough or strong enough to be out of bed. When he sits in his wheelchair for a few hours one day, he's spent the next.

Being in bed most of the time makes him weaker. It makes it more difficult for his respiratory system to heal. It makes his breathing more shallow.

It's an awful cycle.

D wants us to be prepared for some rough weeks ahead.

It's frustrating that even though the Damm Spot is stable we've got these other battles to fight. Battles that aren't easy to win.

I feel just awful that I can't fix this. I ache for my Steve, who is still so full of life and charm and wit and spirit and love.

(Today, after Steve was back in bed, Julie was helping me adjust his position in bed. He wasn't wearing a shirt. "I'm too sexy for my shirt," he sang to Julie.)

I ache for Cooper and Katie. At the same time I'm so proud of how they adjust. Our bedroom has become the new family room. We spread a blanket on the floor between my bed and Steve's bed, and the kids have picnics right there, so they can eat next to Daddy.

My bed is the new reading spot. The three of us (often plus furry Margie) snuggle on my cozy twin bed while I read aloud (we're in the middle of On the Banks of Plum Creek). That way Steve gets to listen, too. Tonight we all watched a movie together, with Steve's oxygen machine providing ambient noise.

I ache for me and for us, too. My heart aches as I watch Steve struggle.

I can't tell you how many times in the last 17 years I've revisited our first date and first kiss in my mind. It literally takes my breath away.

That memory is even sweeter now.

We know how blessed we are to have found each other. We know we were meant for each other. That unbreakable love is what makes this whole experience so painful and so bearable at the same time.

We haven't given up hope or traded in optimism for pessimism. We will continue to fight as much as we can. Steve has always wowed us with his Superman qualities.

Difficult conversations

I can sometimes (often?) be bossy. This is one of those times.

Do you have life insurance?

Have you discussed the conditions in which you'd want to be kept alive?

Have you discussed with your significant other or closest loved one your final wishes for your body?

Please have these conversations now.

Steve and I never expected to be faced with these issues so early -- while our children are so young, while we're still young. You could even say we're lucky to have had the luxury of time to discuss these difficult issues. Steve has been living with one of the deadliest kinds of cancer for more than a year and a half. Some people don't get the chance to consider end-of-life issues in the way we have.

I'm not an expert in any of these matters, but I do want to share what Steve and I have learned, hoping that it might help others.

Life insurance
If you have access to life insurance at work, you should sign up for it. And if it's an option to pay more for more coverage, you should do that, too.

While you're at it, find out if the policy is portable. If you lose your job, are you able to pick up the total cost of the premiums and take the policy with you?

Even if you have a policy through work, consider buying an additional policy through another source.

If you, like me, don't have a full-time job with benefits, please buy yourself a life insurance policy. Mine is with the same insurance agent who handles our home and car. We get a discount for bundling.

Advance directives
Laws vary from state to state, and again, I'm not an expert. But you should at least have a conversation with the person closest to you about under what circumstances you would want certain medical procedures performed.

We have a living will that directs care for each of us in the event that we're unable to make decisions.

Hospice would prefer that Steve have a DNR (do not resuscitate) order on file, but we've elected not to have one yet. Because Steve's tumor is stable, we feel strongly that he should be treated for other complications.

If the tumor begins to grow again and we're unable to treat it with chemotherapy or other agents, we will revisit the DNR status.

Body
Steve would like his body donated to UT-Southwestern for medical research. He hopes that doctors can study samples from his tumor to help others with GBMs -- perhaps develop a cure or vaccine.

We, of course, pray that the donation won't be necessary for a long time. And I guess I thought that when the time comes, I'd just figure out what to do.

We learned today from our hospice social worker, who made a welcome, spontaneous house call, that there's an actual process to will your body to UT-SW. I assume the same is true for a donation to any medical facility. The person who wants his or her body donated needs to sign documents in advance.

So in the next few days we'll complete the necessary paperwork.

When you die, do you want to be buried? Cremated? Organs donated? Whole body donated? Have you shared this with anyone?

These aren't easy topics. But I think they're easier when they're not in the middle of a crisis. And once you've had the difficult conversations and made decisions, you can move on, with a great burden lifted.

Mostly quiet

I'm happy to report a slow news week as far as Steve is concerned.

He's still experiencing variations of symptoms. This week he's struggling a little more with chest congestion and shortness of breath, which in turn creates more fatigue. He was able to sit up in his wheelchair for a few hours a couple of days this week to work and eat at the kitchen table.

The house has been quiet much of the week -- Cooper is on vacation in Washington, D.C., with Jim, Betty and Uncle Jim. We can't wait to see our little guy tomorrow and hear about his adventures.

Jim, Betty, Jim, Cooper and Rep. Michael Burgess (our representative and father of our friend Jessica)

Katie and I have enjoyed our time "alone." We've been swimming, reading, coloring and painting. We read Charlie and the Chocolate Factory together over the past three days. She especially loved the book because she was allowed a piece of chocolate after every other chapter -- definitely an incentive to keep reading. We finished the book quicker than I expected!

I continue to field daily questions from Katie about life and death. This week's main questions: Does it hurt to die? Do children ever die before parents?

Last week she told Justin, our babysitter, that because he's older than she is, he would probably die before she does. "I'll miss you when you're in heaven," she said. "But the happy thing? You'll be in my heart."

I'm thankful that she's able to express herself so well.

After breakfast one day this week, she said, "Mommy, I really need to pray right now."

So she folded her hands, squeezed her eyes shut and said: "Dear God, Please keep me safe and don't let me get lost. Amen."

Muppet

No updates in a few days is a good thing! Steve has had no more bleeding since Friday morning.

He's had the normal ups and downs -- very tired one day, a little more energy the next; can barely walk with the walker one morning, walking better in the afternoon. Today he is more short of breath than yesterday, but we're not worried.

His left side isn't exactly useless, but it is rather floppy. We've been joking that his left arm looks and behaves like a Muppet's arm.

Yesterday I lovingly called him a "Merson" -- half Muppet, half person.

Steve called himself a "Mude" -- half Muppet, half dude.

Facebook friends added their own fun versions.

From Kevin:
"Mutha" -- half Muppet, half brutha
"Mellow" -- half Muppet, half fellow

From Chrys:
"Mud" -- half Muppet, half stud

Feel free to add your own version in the comments.

ER update: Home

We are home! We don't love ER visits, but if we have to endure them, we like 'em short.

Steve is back in bed, caught up on his daily meds and hoping for a long nap. He drank a chocolate malt on the way home and will probably stick to very soft foods today, to keep pressure off the upper left side.

We're hoping for a calm, uneventful weekend!

ER update

The bleeding in Steve's mouth stopped shortly after he arrived at St. Paul.

His lab work looks pretty good. The platelets and clotting values don't indicate a big problem.

The bleeding was in that little piece of gum that sits between the teeth -- between the two last teeth on the upper left side of his mouth. Dr. B, the ER doctor, just gave Steve a shot (a mix of epinephrine and Novocaine) at that site. The idea is that the adrenaline will help the vessels in that area clot better.

Steve was very brave with the injection. In the ER (unlike at a dentist's office) there is no numbing medicine first -- just a needle straight in the gums.

I spoke with Dr. M, and it looks like there's no reason to keep Steve. We may take today off from the blood thinners and then step down the daily dose a week earlier than expected.

We are relieved to think that we may be back home in just a couple of hours!

ER

Steve woke up this morning with bleeding in his mouth that wouldn't stop. I talked with Dr. M, and we decided that with his history of low blood counts and current use of daily blood thinners, it would be best for Steve to be seen right away.

Our friendly Frisco ENTs arrived quickly, assessed Steve and determined he was stable enough to make it all the way to St. Paul (a good 30 miles from our house).

So Steve and I are here now. The nurse has drawn blood so we can see what his counts are and how his blood is clotting.

I'll update more when we learn more. Thanks for your prayers.

Inching along

Steve is slowly, slowly getting a little better. It's hard to say if today is better than yesterday, but today is definitely better than last Thursday.

Yesterday and today, Steve spent most of the morning and part of the afternoon in his wheelchair. This is a huge victory, as he'd been spending about 23 hours a day in his bed until now. He spends a lot of energy sitting up and working (yes, he's still working when he can) and then requires a long afternoon nap.

He is still short of breath, but it's not as bad. He still needs breathing treatments, but not as often.

His ability to walk is still severely hampered. He uses his walker to move from the bedroom to the bathroom and back. There are many times when I need to physically pick up his left foot or bend and straighten his left knee.

We won't be able to address these physical needs until Steve's overall strength and health is better. That's OK -- we have patience to spare.

*****

Cooper, Katie and I are reading the Little House series by Laura Ingalls Wilder this summer. This afternoon we read I quote that struck me as important:

"There's no great loss without some small gain."

(from Little House on the Prairie)

Guest blogger Liz: See Spot Run

Hello, See Spot Run runners!

It is sure hot out there -- what a great time for a run! The "Too Hot to Handle" run is this weekend. Registration is closed but I know some of Steve's dear friends will be out there running for him. If you would like to cheer them on this Saturday at White Rock Lake, you can go to this link for more information on the time and course layout.

Also, we will be running the White Rock Marathon again this year, and it's not too early to start training.

Every mile we log keeps that Damm Spot on the run! Let's keep Steve and his family in our thoughts and prayers.

The See Spot Run team is always looking for runs and new members. Please e-mail me at runforsteve@gmail.com for information or to let me know you're interested in joining us!