Out of the boat

Our friend Tom sat with Steve yesterday morning, allowing Cooper, Katie and me to attend church and Sunday school.

After children's time, Katie went to the nursery, and Cooper and I sat together for the rest of the service.

Pastor Wendy spoke about stepping out of our comfort zones as an act of faith. She spoke about Peter stepping out on the Sea of Galilee -- he walked on water until he took his eyes off Jesus.

For full dramatic effect, Wendy stepped in and out of a canoe that sat on the altar for the day.

After the sermon, the congregation is invited to speak aloud joys or concerns. After someone says a name or condition, we all answer, "Lord, hear our prayer."

Cooper has never spoken up before. Yesterday, he spoke clearly: "For my dad."

As the congregation responded, "Lord, hear our prayer," Cooper whispered to me, "Mommy, I just stepped out of my boat."

Sweetie pies

Three neighbor families organized and executed a lemonade stand today, with the proceeds going to Steve.

They set up shop outside our neighborhood pool, braving the heat (the temperature right now is 101) to sell drinks, snacks and fun pencils and erasers.

Abby had been planning a lemonade stand for weeks, her mom says. Abby's good buddy and ours, Asher, also in on the planning, suggested that the money go to Steve. They recruited their siblings, friends and parents to help make signs, serve drinks and more.

Abby, Asher, Autumn, Zach, Cathy and Bill just delivered the money received -- about $400! That pays for about a month of prescription co-pays for Steve. What an amazing gift! (Asher had told me earlier today that his goal was $50, but $100 would sure be nice.)

Thanks to the Knierings, Chapmans and Warhoftigs for devoting so much time and energy! And thanks to neighbors and friends who supported their hard work!

Abby and Asher

Continued prayers

Sweet 8-year-old Connor Cruse of Frisco passed away this afternoon.

He had been battling cancer for more than four years.

We give thanks for his life. We rejoice that he is finally healed. We continue to pray for his family.

Steve stories

Reposting with updates at the end.

From Andrew Harris, who we met in Lubbock and now lives in the Dallas area:

Hey there Steve (and Tyra) ... you guys probably know this, but you are partly responsible for my eternal happiness. As you remember, Joel and Cheryl got married on the South Rim at Big Bend National Park. Your passenger that day as you made that VERY long drive? One Pamela Dunsmore, my future wife and mother to my beautiful daughters. Thank you Mr. Ferryman for bringing my life to me. Hang in there buddy. God loves you, and so do we!

*****

From Frisco friend & neighbor Debbie Pasha:

I remember in both Ms. D and Mrs. Brinlee's classes that he had a true talent in supervising the crafts at parties that dealt with food decoration! He kept the kids from reaching into the candies, and other treats being used to decorate cupcakes, etc. all the while making it a fun experience for them! He looked like he was having fun with it too!

*****

From Jan Dove Guscott of Aurora, Colorado:

When Steve and Jimmy were little, I came down to Houston for the summer. I think they lived in Spring. I was kind of the big sister they never had, and although I lived in Denver we were close for a long time. I can still remember the house.

Jim and Betty were gone for day and a storm came over Houston. It was the worst thunder and lightning storm I have ever been through. The boys and I huddled together in the living room and watched the lightning and told stories. It seemed like the storm lasted for hours, but I am sure that it was relatively short. I even had my own room in their house while I was in college and a key to come and go. The boys were so active, it seems I almost never saw them. But I remember Houston having the biggest bugs I have ever seen. Jim used to keep a giant size bottle of bug spray handy. The boys were never phased and laughed at my sincere fear of these giant roach like bugs.

I’ve known both Steve and Jimmy since they were babies, I have read the blog every day with a catch in my heart for the super human strength and love I am witness to through Tyra’s words. Please know that my prayers are with you all every day and my love – always…

*****

From Will Pry, who introduced us and is Katie's godfather:

I've known Steve for 26 years. I have tons of stories, many of which I will never tell his wife or children.

This is not one of those stories.

We've run a marathon and a half-marathon together, but my favorite race with Steve was the Wild West Relay in 2007 -- 12 runners, 195 miles in the thin Colorado air from Fort Collins to Steamboat Springs. (We finished in about 30 hours.)

Each runner had three legs to run. And by the time we were running our final legs, we were pretty wiped out. I remember that a couple of miles into my leg, I asked the other runners in the van to meet me for a checkup about two miles up the road. I watched the van fly up the road, expecting it to disappear from sight.

Then it stopped, and someone got out. A good half-mile away, here comes Steve, walking in the sun and thin air, up the hill towards me. He and I were clearly the least athletic members of our team, and he needed to rest up for his last run, so I was really confused about what he was doing.

When he reached me, he had a bottle of cold water for me. Just thought I needed it. (He was right.) And he was full of encouragement -- at a time when my body was starting to win the fight with my mind. I played his words over and over in my head as I finished my run.

When I was going to spend the night with Steve in the hospital back in December 2007, my pastor prayed with me, encouraging me to be the "cup of cold water" for a friend in need.

I immediately pictured Steve, walking up the road to meet me on my last leg of the relay. That's the kind of friend Steve is: the kind you pray to have in your life.

*****

From Sharon Grigsby, one of my editors and family friend:

(My lips are sealed about the stories Steve tells me of his University of Michigan years. Suffice to say, those give me hope -- when my own college-age sons recount their own hair-raising adventures --- that they WILL graduate.)

As dad: In the five years or so that I've known Steve he is A Dad First! There was the day he drove Cooper and Katie all the way from Frisco to Rockwall amid a day chocked full of "kid-related activities" -- just so Cooper could explore all the "old school" toys that our teen-age sons had long outgrown. Not to mention the countless trips he made to the car to load up all the games and books we sent home with them! Or the time after Cooper's soccer game (Katie was still in a stroller) when he sent me, Cooper and Tyra to the best ice cream place ever after the game and graciously took a very-worn-out Katie back home for her nap. (I still remember the look on Steve's face -- he REALLY wanted ice cream that day!)

As husband: Steve attended a newspaper get-together shortly after we had coerced Tyra into working with us for a bit in Editorial. I think that was our first meeting. And he literally spent the entire party singing Tyra's praises. It was oh-so-sincere. She is clearly his hero -- and his favorite topic of conversation! (P.S. Have you ever known another man who keeps his wife's bedside table stocked with chocolate?)

As friend: Steve remains my "virtual running coach." I have had many, many Steve Damm lectures about hydration. Not only is he my #1 cheerleader but, when I least expect it, I get a text from him -- or an email -- saying, "Are you drinking your water?" or "Drink your water!" Sometimes it's before a race, and it helps curb my jitters. Sometimes it's there when I wake in the morning for a predawn run. It never fails to produce a giggle from me! And, Steve, I'm drinking water (your favorite -- Pellegrino) right now.

*****

From Liz Wohl, who met Steve at the University of Michigan:

So many Michigan memories include you - from those first weeks of our MMB reserve days (hobbling behind the band on our crutches) all the way through walking to Michigan Stadium together for graduation. Who knew that having a North Muskegon parental connection would be so meaningful?

I remember watching Robocop with you at Bursley (why we chose it I still don't know - except I'm pretty sure herbs had something to do with it), Beetlejuice at the old State Theater, and of course, Fletch at the Church St. apt. There were band trips, like the Illinois Pork Days game when I laughed so hard I spewed soda on an unsuspecting clarinet player when you said,"spooge from hell!" I think it was a floating cobweb, but who knows?

I will always remember the many scary chickies including (but not limited to) "Hell Fiend With Breasts" and "Tuna Juice." And who knows how many (probably hundreds) of times I relished walking past the Baskin Robbins on my way to class just to peer in the window and exchange our standard greeting (finger horns and outstretched tongue). How that gesture started I have no idea, but it was one of my favorite reasons to walk down South U. Stopping in to visit on slow days was even better (yes, even better than eating the ice cream).

I will never forget sitting in our Rise of the Novel class senior year attempting to stifle our laughter about the cannibals (why it was so funny I have no idea - definitely a Seinfeld Pez moment). I think I still have that notebook - I remember saving it just to look at the cannibal stick figure and remember that day.

I can't even begin to tell you how excited I was when you and Tyra moved to Dallas. Having you in my life again brought me such happiness and utter joy. I have so many happy memories of the four of us together - it was like extending our college years (but with disposable income and better beer).

I remember when you first moved to your Carrollton house and I helped you pick up your car from the shop - we sat on your floor looking at CD's, listening to Joe Jackson. It was like we never left Ann Arbor. The matching belts and shirts with E, all the silly Andersen parties, and laughing so hard at David Sedaris, movies, etc. that we almost spewed soda out of our noses (again).

I was so glad to share in Cooper's early days and all the other milestones we celebrated together. You are one of my most treasured friends, and no matter what, you will always have a special place in my heart. I will always, always think of you and remember these and so many other things.

I am so privileged to be one of your friends and to have had so many years of Dammness. I say all of these things with so many hopes for this horrible illness to disappear and for you to be around forever (well, at least until we're old and cranky).

*****

From Laura Chollick, a Frisco friend and neighbor:

I remember when I first met you and Steve and the first thing I thought of was how loving and caring you both were. And as I got to know you I realized I had really never met a couple quite like you two.

You and Steve both have always been so supportive of Will and our fight and you two are the most unselfish people I have ever met. I remember thinking to myself when I would see Steve with the kids what a great dad he is. In Ms D's class he was always there helping with Katie and smiling the whole time.

I am BLESSED to know you both and so honored to be a friend!

*****

From Sharon Harris, a friend from Holy Covenant United Methodist Church:

Steve single-handedly redeemed Monty Python for me when he sang "The Song That Goes Like This" (is that the title?) with Jennifer Baumgardner at our Holy Covenant choir show. Was it two years ago September or October?

And it was a supreme pleasure to sing in the madrigal group with Steve under Rocky DeLuna's leadership. I remember Steve's reluctant departure from the group's rehearsals when his symptoms first appeared. I love Steve's beautiful tenor. It gave me great joy to sit in front of him and the other tenors in choir. Long live song!

Do you have the Spam-a-lot tape? Does it exist? If it does, you should post it!

*****

From Stuart Cutright, a friend since W.T. White:

At the end of our junior year, I think, several members of the WTW band went to Austin for solo and ensemble. I guess there was not enough interest to generate a bus trip, so parents and students drove down to Austin.

It was understood that we were all to stay together while traveling, so our band director, Mr. Long, could keep an eye on us. Huh. Steve, Chris Abel and I jumped into Steve's yellow-brownish Chrysler LeBaron. Well, this particular car was also a convertible. Once we finally got out of the rain showers (it pretty much rained the entire time on the trip down there and back) on the south side of Georgetown, Steve had the genius idea of opening the convertible and disrupting the caravan of cars.

Examining the scenario I, being the uptight band nerd, was totally nervous. Abel, well, who knows. Steve said, "Ah, what the hell." Though there was some light rain, we did make it to our second-rate hotel somewhere near UT.

The look of anger that Mr. Long gave Steve was unforgettable. Regretfully, I forget what Derle said to Steve, but one can say he wasn't too pleased. We were late, out of touch (oh my gosh, no cell phones! What to do?!?!) and considered outcast for the rest of the trip. Thanks, Steve.

-----

Several months after Steve was diagnosed with cancer, I went for a visit to Frisco. Tyra was just leaving when I got there. The weather was mild, though breezy.

Upon leaving, Steve said, "Do you need a jacket, Tyra?"

I'm pretty certain she didn't hear it as the door was closing, but I thought to myself: Here is a guy who has brain cancer and could just give up and feel sorry for himself. His main concern was Tyra's well being, not his health. Though I am not in touch on a daily basis with Steve and Tyra, it was and is evident that Steve's only concern is the love for his wife and children.

*****

From Diane Stem, a friend from Holy Covenant UMC:

When you asked for stories of Steve, I remembered one moment I glimpsed between the two of you. One Sunday the Adult Ed Committee was responsible for manning a table at the back of the sanctuary. You volunteered to help, but I could tell that you were a little uncomfortable with the idea.

You and Steve walked up together, and then he gave you the most beautiful kiss I have ever seen. If kisses were words, his would have been one of promise -- promise that he would be there; promise that you would be all right; promise that you are beloved.

Henri Nouwen said that one of the greatest responsibilities we have as Christians is to let others know how beloved they are. In that one moment between you and Steve, I saw God's presence in your love for one another. Tyra, you are so lucky to be loved by a man such as Steve. And he is lucky to be loved by you.

*****

From Neil Rockind, an ATO fraternity brother:

Remember that nickname? Couch Squid...! Oy, my political career was destroyed before it even got off the ground. Lol. You have a beautiful family and while they no doubt bring a smile to your face, I thought that a quick flashback to that nickname and our college years together might do so as well.

I wanted to write to tell you how kind you were to me in college. I didn't always do things politely or delicately and often was downright difficult to stand but you were always kind. A guy like me never forgets people who were kind.

I didn't want to write to dwell on your condition. Lord knows you get enough of that and I've said my prayers to my God figuring that all bases should be covered just in case.

Instead, I wanted to tell how much you've inspired me as of late. I'm a criminal trial lawyer. I am a workaholic. I'd take piles of work home and work even when it wasn't necessary. I read your wife's blog and am inspired to change. Our time is precious and limited, be it for 20, 40, 60 years. But I was missing out on my life. I wanted you to know that. I'm enjoying more time with my family.

I am thinking of you and praying for you.

Love,
A brother for life.

*****

From Ami Jones, Tyra's aunt:

I will never forget the first time we met Steve. We had only been living back in Texas, in Austin, for several months when Tyra and Steve made plans to come visit us. Tyra had told me about this special man in her life and even before I met him I had the idea that we would love him. He was obviously already making Tyra happy! She bubbled about him to me over several phone conversations prior to their visit.

Our two daughters, Sasha, then 5 years, and Tara, then 2 years, were both enchanted with Steve from the moment he set foot in our home. He had, and still has such patience and a genuine affinity with all children, and adults! Those of you blessed to know Tyra, already know she has always possessed these same qualities, and many more, the both of them.

That first weekend they visited, our youngest daughter Tara would not leave Steve alone for a moment. He graciously and genuinely endured this love fest from our affectionate and playful 2-year-old. She climbed on him like he belonged in a park, and he engaged her and was playful and sweet and kind, a true gentleman.

To this day they have a special connection, those two. On the front of our fridge is a photo of Steve with our Tara taken about two years later, and she is still hanging all over him and both of them are beaming sunshine. Steve has this same photo framed at home.

At some point during that weekend Steve found me alone in the kitchen cooking and proceeded to tell me how much he cared about Tyra, how much he loved her, how special she was. He went on to tell me that he knew how much Tyra loved my husband Rich and I, and how he was so thankful that she had us in her life, how thankful he was that we had been a stable and positive presence in her life through the years. This lovely gallant gentle man stood in my kitchen, someone I had not even known the day before, and made me feel beloved.

We all fell in love with Steve that first visit and we will always be in love with you, Super Steve. Not only because of the wonderful man and father that you are, but because you have brought such a world of happiness and joy to our Tyra, and of course Cooper and Katie.

You make huge ripples in the pond for all of us, Stevie. The world is a far better and brighter place because of you. The profound impact that you still make will always be present. I have often said through the years that if our two girls are blessed enough to find a man that is even half the man Steve Damm is, that we would be very happy. Steve, you have raised the bar for the rest of us, my dear, and we love you and thank you for that. You are beloved by so many, and always will be, you sweetheart of a man.

*****

From Chris Stull, a friend from W.T. White:

I am an old high school buddy of Steve's. Steve and I haven't talked since high school, but I still consider Steve to be a close friend. When you share a liter (ofthe best beer on Earth), at the Hofbrauhaus in Munich, Germany, in high school, there is a bond.

I wanted to voice now and speak, not just for me and my family, but for all the long lost friends following the trials that you face every day, and who are inspired and amazed by it. Although you may not hear from all of them, let me say, we admire the strength and determination in both of you. And, Tyra, thank you for the blog that lets us in.

Steve, my friend ... It's been a long time. One of the strongest images that comes to mind when remembering so far back, is a road trip we took as seniors. I can't remember if it was a band thing or a German club thing, but I remember you.

You were sporting the spiked hair back then, with the Terminator shades, and the best part, driving a convertible. I remember your expression never changed. The wind in the open convertible was moving everything around you, but you were steady. I don'teven think your hair moved. You were focused, looking down that long dusty road, just cruising, the hint of a grin ... and I thought, "That dude is way cool."

You're fighting the good fight, Steve. Hang in there, man, and know that there are those of us out there that haven't told you that we care, but think about you every day.

God bless you and your family.

*****

From Dana Cutright, family friend from Dallas

You may or may not know about Steve's motorcycle. My husband was a great motorcycle enthusiast. At any given time there were as few as six or as many as maybe a dozen motorcycles here at the house, or in storage elsewhere.

I don't remember what first interested Steve in a certain bike that Langdon had. There were trial rides, negotiations, etc. Steve finally bought the motorcycle. His plan I think, was to ride it back and fourth from Dallas to Brenham, and that he did.

I don't think Betty & Jim were too excited about the purchase. We never discussed it, but our friendship weathered that storm.

I was just remembering attending your beautiful wedding on that very hot day here in Dallas, 15 years ago today and I remembered the "motorcycle story," too.

*****

From Laurie, of Freeman Photography in Coppell

I remember several years ago, when we were in our old photography studio, and Steve came in with you to order photos of Cooper and Katie (or maybe it was before Katie was born, can't remember!).

I was so impressed that he took the time out of his busy schedule to be so involved in ordering their photos. I thought at the time, "now, that's a loving, caring, involved Dad!" Cooper and Katie have been very blessed indeed!

*****

From Nancy Arnold, a friend from Holy Covenant UMC:

I sat by Steve in choir at Holy Covenant. We're in the back row seeing pretty much everything that happens. A lot of goofy things happen on a Wednesday night after work. Some of the goofy things were just plain silly. Steve and I would look at each other, as if to confirm, "Did she really just say that?" Then, stifling laughing out loud, we would roll our eyes and try to be nice. Steve, I'm rolling my eyes just remembering.

*****

From Dawn Ladny, a Frisco friend:

The only story I can share about Steve is after he had already been diagnosed with cancer. It brings me to tears, and it shows his true dedication to being the best father a child can hope for.

We had gone to a Scout weekend campout. I knew Cooper was going, but I heard that his grandfather was going to accompany him. At that time, I couldn't help but to think about my own kids who have missed out having their daddy with them at all of their functions.

At the campfire on the first night, I saw Cooper hiking down the trail with his grandfather...and his daddy was right there with him. I was so happy that Steve was able to go on that campout. I know it was important to him ... and equally as important to Cooper.

He was so tired and his gait was unsteady ... I was concerned for his safety. But he was there; his dad helping him to navigate where he needed to go. I know everyone was happy to see him there. It warmed my heart.

*****

From Eric Wohl, who met Steve at the University of Michigan:

My favorite stories of Steve date back to our days at Michigan together. One of my earliest memories of Steve was the day he introduced me to my beautiful and talented wife, Liz, who has been my partner and friend for over 20 years now.

I’ll never forget the Michigan Marching Band trip we all made to Toronto (a lamely veiled excuse for a Molson tasting tour) where Steve and another old friend, Seth Friedman, introduced me to their cute friend Liz. It’s because of Steve that Liz and I first met and have him to thank for making the introduction and friendship blossom over the course of my senior year.

Steve, as some may know, had a different and very wacky side to him in his days back in Ann Arbor, and I think his fraternity rush to ATO is one of the best examples of the two sides of Steve. I remember encouraging Steve to come by our house to consider rushing for ATO and Steve’s general perception that fraternities were a useless waste of time for joiners.

I managed to convince him to come out anyway and Steve put on quite a show as the young eager beaver complete with carefully coiffed hair, navy sport coat, khakis, penny loafers, tortoise glasses and plaid bow tie. He made quite the impression as the polished, thoughtful, polite and funny young man I knew and loved.

Shortly after Steve was invited to join the house, the favor was returned in classic Steve style. As the chapter Pledge Educator at the time, Steve showed his true rebellious self by growing his hair out and made a habit of coming to the house with toothpaste-infused Mohawk, ripped jeans, Doc Martens and skeleton earring for the full effect. I still laugh when I think about the first time we all saw him and wondered if he had had an accident or suffered from a split personality disorder.

He was a great brother to one and all.

The other special story of Steve was his support in my working life when he helped me make the difficult decision to leave my job with Pepsi after 9 long years. Steve had leveraged his great talent in medical practice management (thanks to his hard-earned experience and connections at Baskin Robbins in college) and joined Arthur Andersen’s business consulting practice in Dallas.

He was a huge support in helping me think about a big career change and helped me navigate the maze of Andersen to ultimately land one of the best jobs I’ve ever had in my career. Steve was there early and often to make sure I was doing well. When we were both in town (a rare event back then), we always had lunch together to catch up (the employee referral bonus for making it 90 days helped, too). No matter how busy we were or how long our lunches lapsed, we always picked up where we left off as old friends.

I cherish the friendship and memories we’ve built with the Damm family and join everyone else in hoping Steve’s horrible illness goes away and we all continue to have the privilege of being a friend to Steve.

*****

I look forward to adding more from you all! Send them to tyradamm@gmail.com or leave them in comments.

Excellent news: MRI shows no change

We just visited with Dr. M on the phone, who reports that today's MRI shows virtually no change from the last MRI.

This is such glorious news -- news that I honestly wasn't expecting. It's still sinking in.

Dr. M attributes Steve's worsening neurological symptoms to his extreme fatigue and slow recovery from all of his respiratory issues.

Our continued goal is for Steve to get stronger, so that he can resume physical therapy and possibly chemotherapy. His stable scan gives us a great window of time to reach those goals.

Today has been a long day. Steve and I were gone from 9 a.m. to 1:45 p.m. Steve was so wiped out when we returned home -- he had been sitting up for almost five hours, had been moved from one imaging center to another, we ran out of oxygen on the drive home and it was 100 degrees outside.

As he was trying to stand up with his walker to get out of the minivan, he fell. Not to the ground, but to the floor of the car. Neighbors Ron and Derek were able to help me pick him up and put him in his wheelchair.

Jim and Betty arrived just after to take care of Steve so Cooper, Katie and I could leave to celebrate Coop's birthday with some of his buddies. There were 10 children total, and we watched Ice Age: Dawn of the Dinosaurs and then ate dinner together. (Special thanks to Zena and Cathy for helping chaperone.)

As much as we loved the party and being surrounded by so many sweet little people and their families -- all part of our own extended family -- I couldn't stop thinking of Steve at home, missing Cooper's party. I couldn't stop wondering about his MRI results.

I guess I shouldn't have worried at all, but if you know me, you realize that's just not possible.

The four of us should all sleep well tonight, and tomorrow is a new day. A day not promised -- a great gift when it arrives!

Thank you all for continued prayers and support and strength.

MRI in the morning

Steve and I will report to the cancer center Thursday morning for an MRI so we can see what's going on with the Damm Spot.

We typically get results about an hour later. But Dr. M's clinic schedule is packed, so we'll talk with her late Thursday from home.

Steve will also have a chest X-ray tomorrow. His respiratory symptoms have worsened today. His breathing is shallow, he has a rattle in his chest and his temperature is elevated. Dr. M and I spoke late tonight, and we've decided to extend his antibiotic dose. I plan on waking up every two hours tonight to check on him.

*****

Some wisdom from Katie today:

"I wish I was a wildflower so I could grow all by myself."

"Watermelon is like a popsicle, but it doesn't melt."

"I am filled with many hearts. My red heart creates hearts for other people. My yellow heart spreads sunshine."

And from Cooper:

(After he saw a Hamburger Helper commercial for the first time)
"That looks good! I mean, macaroni and meat!"

(While reading the newspaper)
"What does m-e-n-o-p-a-u-s-e spell?"
(I briefly explain)
"Why is there a musical about THAT?"

Bits and pieces

Steve has a new symptom that isn't worrying us yet but is worth noting.

His vision is changing, especially with too much light or not enough light. Images are blurrier, and he has trouble distinguishing objects.

His left side is still much weaker today than three weeks ago. We realize that this could still be a side effect of the respiratory problems and his body being weak overall.

*****

His fatigue is debilitating. He spends the majority of the day in bed; that is most unusual for Steve. His body is just too tired for sitting up for long.

*****

The hospice home health equipment vendor arrived yesterday to set up their hospital bed. The previous vendor wasn't here yet to break down the old bed, so the hospice people took care of that. Then the old vendor showed up and took his bed away.

The old vendor also wanted to take the wheelchair that we've been using since Steve came home from rehab at Zale. The hospice-provided wheelchair is heavier and harder for me to push. So I told the old vendor, "No." Politely, of course.

I'm trying to work out an agreement with our insurance company that allows us to keep the first wheelchair.

*****

I've been giving Steve blood thinner shots in his belly every afternoon. The procedure at home is more complex than in the hospital. I draw the medicine from a vial instead of using pre-measured, spring-loaded needles. Steve never flinches and says he doesn't feel anything.

Still, I have no plans to pursue a nursing degree. I'm most thankful for professionally trained nurses (including Cyndi, who trained me at home on the procedure).

*****

The home health aide began work today. She sat in the kitchen with us as Steve ate breakfast and Katie painted. Katie talked nonstop for about 20 minutes -- a good introduction to life at our house!

She then helped Steve with a bath and with dressing. She'll spend 90 minutes a day, three days a week, at the house to help Steve.

*****

Katie and I were visiting yesterday morning while I was cleaning the kitchen.

She suddenly said, "I have a sadness because Daddy's tumor and crazy eye won't get better."

This is not something that we've told her. We always talk about hoping for and praying for his tumor to get better. (We also make no promises that it will get better.)

This was her own conclusion.

I wrapped her in a big hug. She held on tightly for a few seconds.

And then we worked on building a new Lego set.

Baby love

John (a Run for Steve team member) and Caren introduced us to their darling three-and-a-half-month-old babies this afternoon. Katie danced around the house all day, asking when the babies would be here. Steve rested and napped to save energy for the special visit.

Nick and Steve

Our patience was rewarded with sweet cuddles and gummy smiles.

Makena and Katie, Cooper and Nick

There's great comfort in the promise of a sweet, squishy baby -- even more so when multiplied by two!

We agree ...

(Thanks, Bill, for forwarding!)

Since we've been home

We're doing our best to settle in since coming home late Wednesday.

Steve's symptoms seem to get a tiny bit better every day.

Today he's been able to say three or four words before catching his breath. Yesterday he could say just one word before taking a breath.

He's moving around at home more than in the hospital. Every time he walks with his walker (very small distances), he gets a little better. He's talking out loud as he walks to help him relearn what to do -- "Right foot forward. Stop. Left foot forward."

He's been eating at least two meals a day at the table with us. He needs to sit up at least half an hour before eating (after he takes Reglan) and an hour after eating to reduce the chance of acid reflux, which could lead to coughing, which could lead to aspiration. In those before and after times he's able to play with the kids or watch them play or just enjoy being upright in his own home.

I've been working with hospice representatives off and on since we came home -- chaplain, social worker, admissions nurse, case manager nurse, pharmacists and home health equipment people. I think that this transition period will be the most time intensive. Once we have a routine down, everyone should fit more naturally into the schedule.

A home health aide will be here for about 90 minutes three days a week to help with bathing and other simple tasks. She begins work Monday.

The case manager nurse will stop by once a week to take vitals, check on symptoms and change Steve's PICC line dressings. (One outstanding question is if Steve will keep the PICC line, which was installed for chemotherapy, which he can't get now for a while.)

We can call on additional services as needed -- massage therapy, music therapy, counseling.

Aunt Ami returned home today, after spending nine days at the house. Sarah spent a few hours here today, running errands, cooking, taking Cooper and Katie to the pool. Jim and Betty will be here soon to help us celebrate Cooper's eighth birthday, which, he'll tell you, is official at 7:07 p.m.

We loved being home for our anniversary yesterday. We opted for takeout dinner at home, with Cooper, Katie and Ami. It wasn't like some of our fancy outings of the past (Stephan Pyles, the French Room). There's nothing like an inoperable brain tumor, pulmonary embolism and hospice to put the celebration in perspective. Being together is all that really matters.

15 years

Steve and I tell stories differently.

I think years of editing and condensing other people’s words for newspaper publication heightened my sense of brevity. I tend to answer questions with the most efficient use of words.

Steve is a natural storyteller. He adds colorful phrases and pauses for emphasis and goes off on tangents.

His stories are always better than mine.

When people ask how we met, I usually say something like, “One of his best friends from high school was one of my best friends in college. He introduced us.”

Steve’s answer takes longer but is definitely more fun. And it illustrates how seemingly random twists and decisions lead to life-changing events.

Steve and Will Pry were friends at a North Dallas high school. They were in band together. They shared classes. They sometimes shared contempt from certain teachers who didn’t appreciate their adolescent antics.

Upon graduation, they went separate ways.

Steve attended the University of Michigan, following a family tradition set by his grandfather, great uncle, dad and others.

He took a while to settle on a major. Pre med, pre law, religion and finally English literature because he realized he was going to graduate soon and needed to declare a major. He had more English credits than any other.

Will attended the University of North Texas, where he majored in journalism.

When Steve would come home from college breaks, he didn’t return to Texas. His parents had since moved to Miami, so he spent summers and Christmases in Florida.

Will was dating a young woman he met at North Texas whose family was from Florida. He spent some time with her family during breaks.

And Steve and Will resumed their friendship.

While Steve was in college, he worked for a Baskin-Robbins franchise owned by two guys – one who lived in Michigan and one who lived in Texas.

The Texas partner, Tim, was visiting the summer after Steve’s graduation and asked what Steve would do at the end of summer.

Steve’s plan was to move in with his parents (who had just moved back to Texas), study for the LSAT and apply to law schools.

Tim convinced Steve to instead move to Brenham, Texas, where he managed a large physician practice. He appreciated Steve’s work ethic at the ice cream shop and thought Steve would be a good fit in the business office.

So he headed to Blue Bell country.

Steve may have been a good fit in the office, but he sought more than Brenham could offer on the weekends. He’d often drive to Dallas, stay with his parents and visit his long-time friend, Will, still at student at UNT.

It was at North Texas that Will and I met. We were in the same reporting class. He’d set a Big Gulp on the desk in front of mine. Gravity took over, the giant soda slid and fell on top of my black-watch plaid back pack.

I didn’t hold a grudge. We later worked on the college daily together and were co-managing editors when he introduced me to his friend Steve.

I was engaged at the time (that’s a whole other story) and didn’t pay him much attention.

A few months later, the engagement was off. My ex and I had four tickets to The Cure concert and, for reasons I don’t recall now, I thought it was a good idea that we still go together.

Will convinced me otherwise. He also convinced me to invite his buddy Steve.

Melissa Tarun, Will, Steve and I braved the heat of Dallas in June to see The Cure live at Texas Stadium. A few weeks later, Steve and I had our first official date. All because Steve scooped ice cream in Ann Arbor and spent summers in Miami with Will.

Fifteen years ago today, we were married.

No matter how you tell the story, it always has a happy ending.

July 2, 1994

Home and hospice

This is just a quick note to report that we arrived home and that Steve has been admitted to hospice service. I can explain more tomorrow all those details. Right now, though, I look forward to sleep in my own bed.

Thank you all for the many prayers that carried us through the past nine days.

Getting ready to go home

1. Steve's early morning lab work showed that he was low on potassium. That required an infusion of potassium, which took about four hours over the morning and afternoon. (It was supposed to be six, but because he's receiving medication through his PICC line and burning at the entry site isn't an issue, our sweet nurse moved it to four hours.)

2. He's eaten well, without reflux or aspiration or choking, since yesterday afternoon.

3. We expect to leave the hospital sometime after 4 p.m. today.

4. We've learned that July 1 is the day once a year that teams rotate and residents, interns and fellows move around. Steve's medical team this morning was entirely new, which leaves me a little unsettled. Thankfully, Dr. G's team had everything in place, and we've just been waiting to see if he's able to hold down food and acid. (One of our doctors called July 1 "the scariest day in the hospital." Please remember that when you're scheduling elective surgery in the years to come.)

5. I am equally thrilled and terrified that we're going home. Home will be glorious for obvious reasons. But if something goes wrong, I won't have help as soon as I press a button. I expect to feel more comfortable when we're home, get settled in and visit with the hospice nurse who will be admitting Steve at home today.

Delay

Steve's had some difficulty with reflux after meals today. He's being as careful as he can be. Small bites, careful chewing of soft food, sitting straight up, tiny portions.

Still, he is struggling with stomach acid coming up after he eats. After breakfast, quite a bit came up and out of his nose and mouth. He had a less trouble at lunch but still had acid in his throat after a tiny meal.

We are doing everything we can to avoid another aspiration episode. Stomach acid is particularly damaging.

Starting today with every meal he's going to take Reglan. Plus he'll continue Pepcid and Nexium.

Steve and I and the doctors feel more comfortable with another hospital night. Steve and I both wept over the decision. We miss home, Cooper and Katie and furry Margie terribly.

But we don't want to take unnecessary risks. In addition to the acid trouble, Steve is battling more fatigue, weakness and shortness of breath than yesterday.

Aunt Ami will bring Cooper and Katie to the hospital for dinner tonight. I don't think she can sneak Margie in -- she's too wiggly and barky.

We pray that another day brings Steve relief and rest.

It would be super wonderful if we're all home together Thursday, for our 15th wedding anniversary, and Friday, for Cooper's eighth birthday. But if that isn't possible, we'll find a way to celebrate here at St. Paul.

St. Paul, after all, is where Cooper and Katie were born. It's not London or Paris or Legoland (all places we'd planned to be this week at one time or another), but this is a joyful place.

Exit strategy and more

Steve seems to be slowly and steadily improving each day.

He's still extremely fatigued, but when he's alert, he seems more alert.

His pulse-ox level is better -- up to 96 at one point today. (That's on six liters of oxygen, but we'll take it!)

He passed his modified barium swallow study this afternoon. (This is the third time he's taken the test since December 2007. He sits in a chair in a radiology room. He's given food and liquid mixed with barium. An X-ray machine is pointed at his head and neck, and in real time we can see the substance enter his mouth and go down his throat.)

He still struggles with shortness of breath, but we may be dealing with that symptom for some time. (Even after the blood clots dissipate, he'll likely have tissue damage in that part of the lung.)

Based on his swallow study results, the medical team is going to let him resume a regular diet. (He's been on a soft mechanical diet since Saturday.) We will continue to be vigilant -- small meals only when he's alert. He's finding that if he finishes about half his plate, he's OK. More than that, and he starts to cough while eating.

If he does well with dinner tonight and breakfast tomorrow, and if there are no further complications, he should be discharged sometime tomorrow morning.

*****

One of the outstanding questions is if he'll be admitted to hospice care when we get home.

This decision has been a major struggle. We are not afraid of the concept of hospice. But we want to be sure that this is the right time for Steve.

The hard reality is that a glioblastoma in the pons is an awful diagnosis. We are blessed beyond belief to have held on to dear, sweet, amazing Superman Steve for a year and a half.

We know that hospice is necessary at some point in our journey.

We still have great hope that Steve will recover and get stronger from all that plagues his respiratory system right now. We don't want to limit our treatment options in the short term or long term.

I have spoken with three representatives from the hospice group we're considering (the agency recommended by Dr. M). I have spoken to three doctors familiar with Steve's case. We've talked with Steve's parents and with friends familiar with hospice. If I charted for you my comfort level after each conversation, it would look like a mountain range with deep valleys.

My sense right now is that we will enroll Steve in hospice for at-home care and continue our role in steering the plan as much as we can. If, after a week or a month, we find that it's not working, we can take him out and seek other options for some home health services.

When I get discouraged by this process and all the awful scenarios that must be explored, I am trying to stop, take a deep breath and remind myself how wonderful it is to have a choice. We rely on medical professionals to take care of Steve and insurance to help pay for his care, but we still have a choice about where he receives care and from whom.

I hate (and I don't use that word lightly) that we are forced to make these decisions. But I am so thankful that all the decisions aren't made for us.

*****

I'm continuing to add stories about Steve. I love reading about the many stages of Steve's life, and I know it will provide a great lift for his spirits. Send yours to tyradamm@gmail.com.

*****

In case you haven't noticed, in the top right corner of the blog is a link to the Sugar Photography slideshow. For the full effect, turn on your computer's speakers. Maybe grab a tissue or two.

Share a Steve story!

One of Steve's fraternity brothers shared with me a nice note he'd written Steve this week. One of our Bledsoe friends sent a note about her first Damm family memory, which includes Steve.

I thought it would be fun if others shared a Steve story -- great reading for Steve and for those who love him!

You can e-mail me at tyradamm@gmail.com or just post a Steve tale on the comments.

Thank you!

Aspiration pneumonitis

We won't be going home today.

The oncology team was concerned this morning by an almost-aspiration incident this morning. Steve had just finished drinking orange juice mixed with a potassium supplement (the most vile liquid he says he's ever had). He was reaching toward his table for something else when he started violently coughing.

We suctioned his mouth and he recovered pretty quickly.

So Dr. G wanted to make sure that Steve could get through lunch OK with trouble. He did OK, until the last bite, when he started coughing again.

Dr. G was still a little worried, especially with Steve's pulse-ox level hovering around 91, even on four liters of oxygen. So he ordered a chest X-ray before discharge.

The chest X-ray revealed a pocket of fluid at the bottom of Steve's left lung. It's called aspiration pneumonitis -- inflammation of the lung caused by aspiration. We suspect it's stomach acid that settled in after Wednesday's ordeal.

Steve will stay another night at least. He'll have another chest X-ray in the morning. It sounds like the doctors are taking a wait-and-see approach, and we will likely be here until at least Monday.

I've also been working with hospice representatives on the phone and in person today. It hasn't been easy. I have a number of questions about allowable treatment and how decisions are made that haven't been adequately answered yet. (I think available staff members on the weekend has something to do with that.)

As difficult as this week has been, it could have been much worse without an excellent medical team as well as family and friends who surround us in person and in spirit with warmth and love.

Friday

As of today, Steve is free from IVs. He started taking oral antibiotics today, and yesterday the Heparin shots began.

Today I actually gave Steve the Heparin shot, under the supervision of his nurse. I'm certain my heart rate was too high, but my hands were steady and I successfully gave him the shot. Steve said it didn't hurt, so I feel less apprehensive about doing it again tomorrow.

Because he's free from IV drugs, doesn't require additional medical tests and is stable, we expect to be able to go home Saturday.

Before we leave tomorrow, we're expecting a visit from a hospice representative. We hope to set up hospice services soon at home to provide some help for Steve and relief for me.

Steve is eligible for hospice because he has a life-limiting condition and won't be receiving chemotherapy for a while. (We've known that Steve can't resume Avastin. In addition, his body is too compromised right now for any sort of chemotherapy.) If he's able to resume chemotherapy, we would discontinue hospice.

The hospice agency we're meeting with has an established relationship with Dr. M, so they're familiar with brain tumor patients and families.

There were many bright spots during the day.

Aunt Ami (who arrived Wednesday and is staying with us for a week) brought Cooper and Katie to visit this morning. Cooper was able to show Steve his hat covered in swap 'ems from this week's Cub Scout twilight camp. Katie showed off some coloring work.

Dr. G and his team visited for a while. Steve entertained them with his one-handed Thriller wave, created last night during Will's visit. (Steve picks up his non-responsive left arm with his right hand and moves his left hand to mimic the late Michael Jackson.)

Julie dropped off lunch for me. Noel and Bonnie and I chatted in the lobby while Steve napped. (They also brought a bag of Starbucks goodies.)

Melinda and Corey treated us to a fabulous steakhouse dinner. Steve was especially happy to be back on food. He loved the filet, garlic mashed potatoes, creamed spinach and bread pudding.

Jim, Betty and Uncle Jim stopped by for a late-night visit.

The very best will be when Steve and I are home again with Cooper and Katie.

Daddy love

Katie, Steve and Cooper this morning

Thursday roundup

Swallow study
Steve passed his bedside swallow study! He was able to eat pudding and crackers and drink water without trouble.

With that good news, he was allowed to start eating and drinking again this afternoon. He's allowed to eat only when he is sitting up and very alert.

Steve has told more than one person today -- perhaps every person he's seen today -- that he likes his food and is happy to eat again.

Heparin
He was taken off the Heparin IV drip this afternoon and will start receiving the injections later today. The Fragmin injections will be given once a day -- by nurses while we're still at St. Paul and by me (yes, fearful-of-needles me) at home.

Veins
The phlebotomist who we love for her kind demeanor and excellent sticking skills had trouble with Steve's veins this morning. She tried twice, and both times the veins collapsed before she could get an adequate sample.

One of her colleagues arrived later and was able to find a vein the first time. We had good luck later in the day, too.

Still, his left hand is horribly swollen and bruised from the multiple sticks he's endured since Tuesday morning.

Conversation with Dr. G
Dr. G and his residents visited for a while this morning. He talked about how it's difficult at this point to understand which problems are creating which symptoms.

Steve's body is fighting blood clots in his lungs, a lung infection and a brain tumor. It's recovering from an aspiration episode. He's dealing with left-side weakness, fatigue, shortness of breath, coughing fits and more.

Dr. G told us -- in the most gentle way possible -- that there's a chance that Steve won't recover from all of this. That he won't get better. That we may be out of treatment options for the tumor.

If you're like me, that takes your breath away. Just typing those words is a struggle and brings hot tears to my eyes.

He was not saying that Steve won't recover or that anyone is giving up on him. But he does want us to be prepared and to understand that Steve's body is fighting multiple battles that aren't easy to overcome.

The goal is still for Steve to return to his health and strength from a week or more ago.

We are not giving up. We know that with the prayers and love and support and good wishes holding us up, Steve will continue to do the very best that he can.

And as much as we humans like to believe that we're in control of all the details, of course we're not.

For it was you who formed my inward parts; you knit me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; that I know very well. ... In your book were written all the days that were formed for me, when none of them as yet existed.

(from Psalm 139, NRSV)

Aspiration

First, let me say that I've asked Steve politely for no more drama today. (He agrees.) Second, he's OK now, despite a very scary episode.

Melane and I were visiting when Steve took one bite of his lunch and started coughing violently. We rushed to his side, helped him sit up and encouraged him to take big, deep coughs. Then we could suddenly hear excessive gurgling and congestion -- all new.

I realized that we weren't going to be able help him through the episode ourselves and called for help.

A respiratory therapist arrived, assessed the situation and came up with a plan.

She first gave him a breathing treatment. During that time, his oxygenation level was 85 -- very low.

She increased his oxygen from 3 liters to 7 liters.

In the meantime, the remote telemetry equipment alerted medical staff to his rapid heart rate. So his nurse (and the extern assigned to the nurse) came in.

The respiratory therapist began suctioning his mouth and throat, trying to help him expel the building fluid.

The nurse paged the resident.

So there were four medical providers surrounding Steve, who was having great difficulty breathing.

I will spare you all the details, but they eventually were able to force him to expel the food from his lungs.

It was an awful, frightening experience.

He is now NPO, meaning he can't drink or eat anything. Tomorrow he'll be evaluated by a speech therapist to make sure it's safe for him to eat and drink.

I spoke with Dr. M later about this episode and the other neurological symptoms (grogginess, weakening left side).

Based on today's clean CT scan and other information, she's convinced that his worsening symptoms are because of an untreated infection. "Anything that makes you less well in your body affects your brain," she explains.

She thinks that if we can treat the infection, his symptoms will improve.

His nurse is now hanging the bag of antibiotics to treat the infection. (He had to get another line put in his arm, as Heparin and the antibiotic don't mix and have to have separate lines.)

He's remaining on 7 liters of oxygen for now. His pulse-oxygen level is in the low 90s. He's resting relatively well.

Thanks to you all for prayers, visits, meals, caring for Cooper and Katie, calls and more. We never forget how blessed we are.

CT results and more

1. The CT head scan reveals no bleeding at the tumor site. Thank God!

2. With that news, he will resume the Heparin drip sometime this afternoon. We don't want to give the Damm Clot any time to get bigger or develop new, equally damaging friends.

3. After further review of the lung scans from Monday, there is reason to believe that Steve has an infection in his lungs. He'll start antibiotics for that today. And more labs will be run today to determine what kind of infection, if any, it is. An infection could explain his overall fatigue, slow response rate and general feeling of awfulness.

4. Dr. G and his team said they will continue to keep a close watch on Steve. Dr. G re-emphasized the difficulty of treating a pulmonary embolism while also dancing around a brain tumor.

Morning report

Steve slept better last night but woke up with an awful coughing fit. We also noticed that his left side was much more sluggish than normal, and he was extremely groggy.

We let the doctors know. After a quick exam, they decided to stop the Heparin drip for now and ordered a CT scan of his head. (He was supposed to start the Heparin injections last night, but the St. Paul pharmacy doesn't stock the injections. They are on order and should be here this afternoon.)

While waiting for the scan, he ate breakfast. I was pleased to see that he was able to swallow with no difficulty. He was also a little more alert after eating.

He's been wheeled away for the CT scan and should be back soon.

I'll update when we have results.

Heparin plan

The hematology/oncology team, led by Dr. G, visited late this morning.

Dr. G says that the clot is "sizable." It's located toward the bottom center of Steve's right lung. The location isn't ideal. (Sounds like the Damm Spot!)

The good news is that Steve's body seems to be tolerating Heparin well. The 6:30 a.m. blood draw showed that he needed a higher dose. That was adjusted this morning. More blood was drawn this afternoon to see if the level is better.

Based on his body's tolerance for the IV form of Heparin, sometime later today or tomorrow he'll start receiving Heparin injections instead. If that goes well, Steve will continue to receive Heparin injections daily for months to come.

Why so long? Blood thinners like Heparin don't dissolve clots. They stop existing clots from getting bigger and new clots from forming. As long as that clot is hanging out in Steve's lung, he needs to remain on blood thinners to prevent additional problems.

And when exactly will the clot be gone? That depends on his body. There are chemicals in the body that help break up clots so that the blood and tissue can be reabsorbed by the body.

Even when the clot is gone, there is the potential for damage left behind. Steve could have persistent shortness of breath indefinitely. That won't be a huge change from his condition the past few months, but we are hoping that the severity of the symptoms improves soon.

Steve's future treatment of the tumor is uncertain. It appears unlikely that he will be able to continue Avastin. We haven't heard that definitively from Dr. M yet, but all signs point to discontinuing the bio-agent that has sustained Steve for so long.

So, we'll most likely need something else to battle the Damm Spot.

Steve is receiving a breathing treatment now. He's been able to nap off and on throughout the day. We're both looking forward to a night of a few hours of sleep.

Thank you for your prayers and encouragement!

Morning update

We didn't get much sleep last night, but Steve got through the night pretty well.

After we arrived in the room, there were many admission details to cover. I spoke with Dr. M on the phone about using Heparin. She agrees that the first priority is to preserve Steve's respiratory and pulmonary function, and the only way to do that is to prevent future clots and work on dissolving this one. That must be done with a blood thinner.

The Heparin drip started sometime after midnight. A lab tech was here at 6:30 a.m. to draw blood from his left hand. The sample will be used to test his clotting levels. If they are abnormal, they will adjust the Heparin levels and draw blood more often.

(Blood draws are usually from his PICC line, the semi-permanent line in his arm. But Heparin is going in through the PICC, so the clotting sample must be drawn from a different area. Steve's veins are horribly thin and usually difficult to access. Today's tech got a good stick on the first try. One of many prayers is that the sticks continue to be easy and pain free.)

Steve struggled with coughing off and on throughout the night. He's had two breathing treatments since we arrived.

We should start seeing doctors in a couple of hours.

ER update: Pulmonary embolism

The lung CT scan showed that there is a small blood clot in Steve's lower right lung -- pulmonary embolism.

Pulmonary embolism is often fatal because the clot breaks free, heads to the lung and blocks an artery. Dr. B, the ER doctor, says those folks usually don't even make it to the hospital.

Steve's clot, thank God, was very small.

As you may recall, a blood clot was discovered in Steve's right leg a few weeks ago. An IVC filter was placed in a vein in order to catch the clot in case it moved up.

So, the filter mostly did its job. It stopped a giant clot from reaching Steve's lungs.

But the filter can't always catch every little bit. A little bit of the clot got through and settled into his lungs. The clot is what is causing his shortness of breath, fatigue and low blood pressure (discovered today).

The big question now is how to treat the clot that's there. Dr. G, the attending oncologist at St. Paul, believes strongly that Steve needs to start taking Heparin to break up the clot and prevent further damage.

The problem is Heparin and Avastin (the bio-agent that Steve last received Thursday) and brain tumors don't always mix well. There is the risk of bleeding at the tumor site.

So we are forced to weigh the risk of more damage from the clot vs. the risk of damage to the tumor. Dr. G wants to treat the clot. I don't know yet what Dr. M prefers.

Steve and I are both nervous about Heparin. In the few minutes we had with the internal medicine resident, Dr. S., we expressed our reservations and asked lots of questions. At any time during the Heparin dose, we can say "Stop."

And, of course, if Steve's vitals indicate a problem from the Heparin, the medical staff will say "Stop." (He won't be on a telemetry floor, but he will have remote telemetry, meaning machines will be monitoring his vitals, and someone on another floor will watch his information in real time.)

Dr. S understands our hesitation and says there's no clear-cut answer here. But we have to protect Steve's ability to breathe. And Heparin is the best chance we have at that.

She also said that everyone needs to say extra prayers tonight that Heparin will do its job without causing damage.

I have no doubt that you all will join us in that prayer.

At St. Paul ER

Steve and I are at the St. Paul ER. Dr. M recommended we get here to evaluate his respiratory symptoms, which have gotten a little worse this weekend.

He is always short of breath. He can't take deep breaths without coughing. Breathing
treatments aren't helping.

I'll update later.

Update (4:26 p.m.): We're in an exam room. Steve has had a chest X-ray and has spoken with the doctor. We're waiting for results and next steps.

Update (5:36 p.m.): We haven't heard back from the doctor, but the nurse stopped by to tell us that Steve needs a chest CT, abdominal CT and a bunch of blood work. We don't know why. Steve is closing his eyes after reading for a while.

Sweet Sugar post

I first discovered photographer Jen through her blog. So it's a bit surreal to find our little family there.

She wrote the sweetest words, which you can find by clicking here.

Happy Father's Day!

Steve and Katie, after her 4th birthday party yesterday

Steve and Cooper after lunch today

Response is all that matters

My Briefing column from today:

It's a fact of life: We can't shield our kids forever
Ever since my husband, Steve, was diagnosed with an inoperable brain tumor, I've been upset about countless issues.

There are so many problems on the list, it's impossible to put them in any order. Toward the top of the pile, though, has been the lack of control.

Before Steve became ill, a huge part of our parenting philosophy had been to make childhood as carefree as possible. We wanted to shield Cooper and Katie from unnecessary stress. We wanted them to grow up in a safe place, surrounded by people who love them, protected from adult worries.

In those first few months after Steve's biopsy, when I would cry, it was often because our kids' security had been stolen. The adversity-free life that we had tried so hard to create was suddenly filled with challenges I could have never imagined.

Well-meaning friends and family tried to comfort me with words that I heard but haven't fully felt until recently.

There is no perfect life. There is the life you have. And how you respond to the challenges matters more than the challenges themselves.

That's a tough lesson for a planner and worrier like me.

Two years ago, before we knew about some rogue cells multiplying in Steve's brain stem, the four of us were on a fabulous summer vacation. We flew to Milwaukee, drove to the Upper Peninsula of Michigan, spent a few days in my grandfather's hometown, drove to Mackinaw City, took a ferry to Mackinac Island, stayed there for a few days, drove to Milwaukee for some sightseeing and then flew home.

It was a dream come true. Not only were we discovering new places together – I had spent six months planning every step of the trip.

When we left for the north, I carried a three-ring binder with details on restaurants, hotels, routes, attractions. I had specific bags packed for each major leg of the trip. Everything was just right.

Until we were in a car accident just a few yards from the ferry docks.

No one was seriously injured, but the rented minivan was totaled, we were all rattled, and some of my plans crumbled.

I was seriously grumpy for the first few hours after the wreck. Then I realized that I was going to ruin the rest of the vacation for me and my family if I didn't change my attitude.

I had a serious internal discussion with myself. Yes, our plans were altered. But if I let the accident define our remaining vacation days, I wouldn't enjoy a single moment. I chose to shake off the incident, adjust details and move on with a cheerful spirit.

That was a pivotal moment in my life. The lesson I learned from that accident has played an essential role in how I've been caring for Steve, Cooper and Katie in our life with cancer.

I didn't plan for cancer to invade our lives. But it has. So our response is really all that matters.

Steve is less of a planner than I am. He's more spontaneous – and probably more fun.

Living with one of the deadliest forms of cancer has sharpened his focus as a father (and he was already a pretty sharp dad). He takes breaks from work to play Monopoly with Cooper. He reads piles of books aloud. He sits at the kitchen table to color elaborate scenes with Katie.

Those special moments don't erase Steve's condition. He can't walk without assistance, wasn't able to attend a single soccer game last season, hasn't been able to bathe his children or tuck them in for months.

And even though I pray every day for a cure or a miracle, this Father's Day may be one of the last that the four of us celebrate together.

We can't forever shield our two precious children from those cold facts of life. But we can buffer reality and our lack of control with all our love.

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

Busy Steve

For the past two weeks Steve has been going to outpatient physical therapy and occupational therapy for up to six appointments a week. That's six hours of physical exertion under supervision, plus the exercises he does at home.

Jim or Betty have been taking him to many appointments, giving me time to work and take care of Cooper and Katie.

I took Steve yesterday and was mighty impressed, though not surprised, with his progress. The staff pushes him beyond his comfort level -- yesterday he even cried a little from two of the exercises. He leaves exhausted but happy.

During PT, I sat back in a corner and worked. I had a great view of all the activity in the gym. Every one of the patients is recovering from some kind of surgery, injury or disability. And they all work harder and push their bodies further than most "able" people I know. It is truly inspiring to be among so many determined folks.

*****

Steve is receiving Avastin at the cancer center this morning. On our way into the elevator, we saw Dr. A, our radiation oncologist from many months ago.

You may remember him as the doctor who startled us when he said, "The unfortunate thing about this tumor is its location."

Every time we've seen him since, he comments on the tumor's residence in Steve's brain stem. This morning was no exception.

He hadn't seen Steve since last summer. Steve's condition has obviously deteriorated since then, so we explained that he's on his third chemotherapy regimen.

Dr. A shook his head, patted Steve gently on the shoulder, and said, "You know, the tumor is in an unfortunate location."

*****

Steve's skin is showing signs of long-term Decadron use. His legs, especially, are taking a beating. He has two new wounds on his left calf -- both from seemingly innocuous motions.

One of Dr. M's nurses stopped by today to look at his skin. She'll let us know what Dr. M recommends, if anything, to help.

Living a life that includes cancer

On Saturday, while we were waiting our turn at the bank, Cooper and Katie decided to play house in the lobby.

Katie, who may get a bit of the bossy gene from her mom, said, "Cooper, I'll be the mommy and you be the sick daddy." And then she pushed Steve's walker toward him.

Later that day, after I woke from an unusual afternoon nap, I decided I needed to go to the doctor for upper respiratory symptoms. (I have a cold -- not a big deal, but I wanted to be sure to get anything contagious under control while caring for Steve.)

After I returned home, Cooper was clearly concerned.

"Mommy, what if you get cancer? Who will drive us places?"

I explained that cancer is rare and that it's unlikely that I'll develop it. Then I washed my hands (cold germs, you know) and gave him a big hug.

Steve and I don't like that our children have these worries, but it's our life. And we're happy that they're comfortable enough to express their emotions in whatever way they can.

*****

The stolen identity/check fraud process continues. We've closed our bank accounts and started fresh. The $999 that was taken by someone posing as me will be returned sometime during the fraud investigation process. Monday I'll re-establish account links with creditors and file a complaint with the Dallas Police Department.

*****

I have beautiful photos and videos from Friday's choir visit that I plan to post this week.

Week in review (short version)

Monday
Katie and Tyra attended a swim party/picnic.
Cooper went to VBS with a friend.
Steve went to OT at the Sprague clinic.

Tuesday
Photo shoot with Jen.
Cooper went to a friend's house.

Wednesday
Katie went to a friend's house.
Cooper went to a friend's house.
Steve went to OT at Sprague, lab for blood draw at Simmons, and PT at Sprague.

Thursday
Cooper had a medical appointment.
Cooper, Katie and Tyra made ice cream sandwiches at a friend's house.
Tyra ate dinner out with girlfriends.

Friday
Steve went to OT at Sprague.
Someone stole my identity and $999 from our bank account.
Church choir came to the house to serenade Steve and visit.

And in the middle of this, Steve and I both worked from home. All of this was only possible because of folks like Jim & Betty, Liz & Layne, Mary, Wendy, Kelly, Nita, Debbie, Brandy, Julie, Jen, Suzy, Melissa and Mary G -- friends and family who cook for us, drive for us, take care of our children, organize events and more.

We are incredibly blessed, and our hearts are full with love for you all.

Sugar

Jen Weintraub, the uber-talented Sugar Photography photographer, spent an hour with us this morning, taking the most gorgeous photos, as you'll see from the preview below. We can't wait to see the entire collection. Thank you, Jen!

(We also love our long-time photographer, Bob Freeman of Freeman Photographic Studios in Coppell. He's been shooting our family since Cooper was 3 months old, and we look forward to the birthday club appointments every summer!)

Overlapping circles

Cooper and Steve

From the moment that we suspected something was wrong with Steve, we've never felt alone.

Liz, Steve and Layne

Every step of the way, we have been enveloped by an incredible group of people. I think of you all as overlapping circles.

Lori, Steve and Wendy

Family members. Friends from W.T. White and Newman Smith high schools. From the University of Michigan, the University of North Texas and Texas Tech. From Holy Covenant UMC and Schreiber Memorial UMC. From Arthur Andersen, Children's Medical Center and Physicians for Children. From the Bryan-College Station Eagle, the Lubbock Avalanche-Journal, the Fort Worth Star-Telegram and the Dallas Morning News. From Belton, Lubbock, Carrollton and Frisco. From ECDP and Bledsoe. From PTA and basketball and soccer and Cub Scouts. From hospitals and doctors' offices. From "chance" meetings that we are convinced were no accident. Friends of those friends who we now embrace as our own.

Will and Steve

All of those circles were represented somehow Saturday -- whether in person at Kick the Damm Spot or in spirit. (I wish I had photos of each and every one of you!)

Aimee and Steve

Steve welcomed visitors from 10 a.m. to 4:30 p.m., with a smile so big his face hurt. His voice, normally wrecked by the effects of tumor and medicine, was as strong as it's been in months. He watched our own children and those we love as if they're our own kick soccer balls in his honor. He received hugs from folks he hasn't been able to see in weeks or months and made some new friends.

Holly (holding Katie) and Morgan

Saturday was a significant symbol of the outpouring of love, prayers, support, help and gifts we have received. It is truly humbling when people spend their own time to help us and when they cheerfully give money that they have earned and saved for Steve's care.

Molli and Tom

We have been the blessed recipients of extraordinary kindness and generosity. You all have sustained our spirits. We are incredibly thankful.

Allison, Tyler, Phil, Jen, Steve, Tyra, Meghan, Ty and Kelly

Dylan, Melissa, Thalia and Carys (and Austin!)

Steve and Stuart

Andy and Adam

Incredible day

Steve and Tyra on a little stroll around the event room

We're still resting and recovering from Saturday. Kick the Damm Spot was a truly spectacular event! Steve and I get a little weepy every time we talk about it.

What started as an idea from Jen Mango a month ago evolved quickly. The volunteers worked so hard in such a short time, sacrificing time with their own families or jobs or other volunteer activities.

We loved the constant stream of visitors. Steve stayed much longer than we expected -- from 10 a.m. to 4:30 p.m.

I plan to write more tonight or tomorrow, saving today to rest and spend time with our little family.

If you pledged money for Cooper or Katie, you may be interested in their totals. But first, please, please, please cap your donation! Cooper kicked 80 goals, and Katie kicked 42. I completely underestimated their kicking abilities. I'll e-mail you all this week with our mailing address. Checks can be written to The Steve Damm Fund.

And until I can edit my own photos, you can enjoy the superior photography of Layne Smith. His photos from Saturday are here.

Some of the volunteers and their kids (many of them from the Dolphins soccer team)

Today and tomorrow

Steve seems to be handling the effects of yesterday's treatment well. He's had no nausea. He's tired, but that's normal for him now.

He has his first outpatient PT and OT visits this afternoon. Cooper and Katie will spend a couple of hours with Grandma and Papa, and we'll spend a couple of hours back at UT-SW, this time in the gym at the Sprague Clinic.

Tomorrow is the big event! Thanks to amazing volunteers and generous sponsors, Kick the Damm Spot promises to be an awesome day!

Some reminders:

• 10 a.m. to 7 p.m. Saturday
• Fieldhouse USA, Frisco (click here for the site, which includes directions)

While you're there you can:

• Kick for three minutes to raise money for Steve (kids who kick will go home with some great prizes!)
• Sponsor a child who is kicking for Steve
• Donate canned goods for Frisco Family Services
• Volunteer at a goal
• Bid on silent auction items
• Visit with friends
• Donate blood
• Meet professional athletes
• And more!

Home from chemo

Katie and Steve yesterday

We had no complications during chemotherapy today -- just a busy infusion nurse who seemed to have too many patients. While in the infusion room, Steve finished his current book (A Wind in the Door) and took a nap, and I worked and tried to catch up on correspondence. Steve and I made it home just in time for a late lunch, and then I walked to school to pick up our new third-grader!

Cooper this morning, on his last day of second grade

Live from the infusion room

Steve's counts are good enough for treatment today! He's receiving pre-meds now, and Avastin and Carboplatin will follow.

Blood drive at Kick the Damm Spot

Saturday's event gets more exciting by the day! Now you can donate blood from 10 a.m. to 3:30 p.m. at Kick the Damm Spot.

Steve and I are not spotlight-seeking people. In fact, I get flushed and nervous speaking in front of more than six people. Steve is the most down-to-earth fellow I know. We are truly honored that so many people are working so hard to organize an event in Steve's honor. We are especially thrilled now that lives will be saved by blood donations gathered Saturday.

We are looking forward to seeing so many of you in just two days!

Chemo on Thursday

Steve has an appointment for 9 a.m. Thursday for the next, long-awaited dose of Carboplatin and Avastin.

When we arrive Thursday, he'll have blood drawn to be sure his counts are OK. By 9:30 or 10, he should have the Damm Spot-killing drugs dripping into his body.

Please pray for in-range counts and no complications.