Tuesday, June 30, 2009


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.

Monday, June 29, 2009

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.

Sunday, June 28, 2009

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!

Saturday, June 27, 2009

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, June 26, 2009


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, June 25, 2009

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.

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.

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)

Wednesday, June 24, 2009


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.

Tuesday, June 23, 2009

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.

Monday, June 22, 2009

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.

Sunday, June 21, 2009

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

Friday, June 19, 2009

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.

Thursday, June 18, 2009

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.

Sunday, June 14, 2009

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.

Friday, June 12, 2009

Week in review (short version)

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

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

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.

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

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.

Tuesday, June 9, 2009


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!)

Monday, June 8, 2009

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

Sunday, June 7, 2009

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)

Friday, June 5, 2009

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:

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!

Thursday, June 4, 2009

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.

Wednesday, June 3, 2009

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!

Tuesday, June 2, 2009

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.