Love songs

Steve is a member of our church's adult choir but hasn't been able to participate in a few months. He misses the group, and they obviously miss him.

About 20 choir members caravanned north tonight to gather in our family room and minister to Steve and us. For about 45 minutes, they sang gorgeous hymns and anthems, filling our home with beautiful music, warm wishes and love.

Jim and Betty, both members of their own church choir, were here and joined the circle of beautiful voices. Steve sat in the big green leather chair (which belonged to his Grandpa Damm), next to the piano, at which Sharon H. played.

Katie was often in the middle, dancing, clapping and/or singing her own tune. Cooper came in and out. He decided that he wanted to direct the singers (though Debbie was certainly doing a great job on her own), so he ran to his room to fashion a baton out of Legos. He was dissatisfied with the result, so he left and returned again with a long wooden block. Still not convinced that he had the choir's full attention, he ran to the kitchen and selected a wooden spoon. He also lobbied Debbie with a request for "Little Drummer Boy."

The night's songs included "It's Me O Lord Standing in the Need of Prayer," "The Church's One Foundation," "On Eagle's Wings" and Steve's favorite, "Creation Will Be at Peace." Oh, you should have heard the voices. It was breath-taking. All that love alone may not cure Steve's cancer, but it carries tremendous healing powers and the hope for miracles.

We closed with a beautiful prayer.

Then Cooper reminded Debbie of his favorite song, and the choir jumped in a cappella to sing "Little Drummer Boy." (Grandma Alice Cooper, Steve's late maternal grandmother, years ago gave Cooper a music box that plays the song. The box was the inspiration of his request.)

Amazing baker Zita sent with Andy a huge platter of cookies and brownies, and we snacked on the treats before saying goodnight to our sweet visitors.

The Lord bless and keep you

The Lord make His face to shine on you,

And be gracious, gracious;

The Lord bless and keep you

The Lord lift His countenance on you,

And give peace, give you peace;

Shalom, shalom.

"Don't take anything for granted"

Steve reports that it's a beautiful day. The two of us enjoyed lunch together before his urology appointment. The super friendly nurse removed his catheter after almost a week, and he's now able to empty his bladder on his own. (It's a function he says one should never take for granted.) Cooper, Katie, Steve and I enjoyed dinner together, and Steve was able to bathe the kids by himself and get them ready for bed.

Symptom update:

• His voice sounds stronger.
• The right-side tremors continue to come and go. They're most noticeable when he's eating.
• He's not as steady on his feet. The radiation oncologists suspect the steroids are partly to blame. Decadron changes where fat settles and thins muscle mass. His normally strong runner's legs are becoming increasingly thin.
• His fine-motor coordination has declined in the past two days.

Selfishly, I'm thankful that Steve is so positive today -- it helps lift my spirits after a particularly difficult week.

Good deed

Steve is getting a little more stable each day following his back-t0-back ER visits. He will see a UT-SW urologist this Wednesday, and we expect the catheter will be removed then. He still has occasional right-side tremors. He's practicing his breathing and notices an improvement on the spirometer after he blows up balloons.

Because he's focusing on rest and recovery, Steve has had to miss some Cooper events this weekend. Jim, Betty and/or Jim stayed with him while we were out. On Saturday, the Dolphins returned to the soccer field for their sixth consecutive season. Cooper was especially scrappy during this game and scored a goal late in the fourth quarter -- unusual for our boy, who is usually more interested in defending.

On Friday night, Cooper, Papa (Jim) and I attended the Pack 443 Blue and Gold banquet. Cooper and 11 other Tiger Cubs were awarded their Tiger Cub patch, earned after completing 15 activities in specific achievement areas. When a Cub receives a patch, it's first attached upside down. It's turned right side up after the boy performs a good deed.

About a minute after we walked in the door Friday night, Cooper walked over to the big comfy green chair where Steve was sitting and offered to help him up. He said he wanted to help Daddy get up so he could give Mommy a hug -- and that would be his good deed.

Photo that never fails to make me smile

October 2005

Home again

Steve and I are home after his second ER visit in two days. He's resting now.

He felt "off" all day yesterday. He started having tremors on the right side; he said he felt shaky even in his head. The shakiness comes and goes and seems to disappear when he's lying down. The oncologist's nurse, who we consulted by phone, thought the tremors could be related to the fatigue and trauma of being in the ER for so long the night before.

When we went to bed last night, we both had a sense of dread and fear. We just felt unsettled. He woke me up sometime after 1 a.m., saying he needed to go to the emergency room. He was unable to use the bathroom at all, even though he felt he needed to. (I'll try to keep this as benign as possible for sensitive readers.)

I spoke with the oncologist on call, who suggested he should be seen. She also said it would be OK to go to a local hospital instead of driving all the way to St. Paul. I called Andy and Julie, who live behind us, and within minutes Andy was at our house, allowing us to leave.

Will, who was leaving work, met us at the hospital. Betty arrived soon after. Meanwhile, Sharon was leaving Rockwall to get to our house so Andy could go back home to their little guy, who has an awful cold plus asthma.

A kind triage nurse found a room for Steve within about 45 minutes of our arrival at Presbyterian in Plano. (The ER was full because the beds in the hospital were full. Only six of the 18 ER beds were available for incoming patients.) He was catheterized, which offered immediate relief. The ER doctor consulted with Steve's oncologist on the phone. They drew blood and took an X-ray of his stomach and an MRI of his lower back. His bowels were impacted, most likely a side effect of the chemotherapy and anti-nausea medication. Nurses helped take care of that problem.

Layne made a surprise Starbucks delivery; Sharon took charge of the morning routine with the kids and cleaned the kitchen; Liz took Cooper to school; Betty took Katie to preschool; Don visited us in the ER just before Steve's release.

About eight hours after we had arrived, we left for home. He is still catheterized and needs to follow up soon with a urologist. The best guess is that the impacted bowels were pressing on his prostate, causing urinary retention. The good news is none of it seems directly related to the cancer -- just an unfortunate side effect of the treatment.

The emotional and physical toll of two ER visits in one week is overwhelming. But Steve still rarely complains. He says today he's even more angry with the tumor. I suggested he stay home from radiation therapy today to rest (it's OK to miss a dose and tack it on the end), but he's too eager to keep fighting.

Another ER

We are at the Plano Presby ER. Please pray for Steve this morning.

At home

Steve is catching up on sleep this morning after a long ordeal in the ER. We arrived home about 11:45 p.m. and fell asleep about 12:30 a.m. (Betty and Sarah took care of Katie and Cooper last night while we were away.) Steve was happy to eat breakfast with Katie and Cooper this morning before going back to bed.

The official diagnosis is atelectasis lung bases with mild hypoxia. That means that some of the little pockets of air in his lungs have collapsed. He has been directed to practice deep breathing throughout the day and blow up balloons to open the lungs more. We are to pay close attention for shortness of breath as well as pain or hot spots in his calves (which could indicate pulmonary embolism).

I spoke with his oncologist's nurse this morning. She suspects that the atelectasis is caused by the tumor. The tumor is sitting in a crucial area of the brain. It's damaging nerves that communicate with essential systems, including respiratory.

We continue to pray that the radiation therapy and chemotherapy are killing the tumor cells and that his body starts to repair damages in the brain stem.

Good news

The X-ray showed no pnuemonia and the CT scan no clot. There are little collapsed pockets in his lungs. He needs to practice deep breaths. And we are about to go home!

ER

We've been at the St. Paul ER since 3:20 this afternoon. The concern is that Steve could have pnuemonia or a blood clot in his lungs.

Dr. M's office told us to come here because his blood oxegyn level is 93 and he has slight wheezing. He's at a high risk for pnuemonia and clots because of his condition.

They drew blood around 6 p.m. and took chest X-rays shortly after. He's lucky to have a room -- some patients are on beds in hallways. The flu has hit Dallas hard.

I'll update when we know more.

Stepping down

Steve is down to 8 mg of Decadron a day, a big drop from the 24 earlier this week (and the 40 mg he was on post biopsy). So far he's handling the change well. He slept about 9 or 10 hours last night, the most he's had since December, which he attributes to the lower dose of steroid.

His cough and congestion worsened throughout the week, and yesterday he started an antibiotic to help. (Katie also started a course of antibiotic for strep throat. Let's hope Cooper and I stay well!)

Steve's voice has improved all week. It's not back to "normal," but it's definitely stronger and less hoarse.

His vision is about the same as in the last update. He can see well to the left, OK straight ahead and double to the right.

I think two months of exhaustion and stress caught up with me yesterday. I slept about 11 hours, possible because Katie slept in and Cooper was at a sleepover.

We're staying in this weekend to stay warm and dry and let everyone rest. Cooper's first soccer game of the season was scheduled for today but canceled because of rain. We had a great week with Ami, who's heading back to Austin, and are enjoying a visit this weekend from Gretchen, who flew in from Florida (but left the sunny weather at home!).

Good blood counts

The neuro-oncologist's office called today. Steve's blood counts are just right! This is great news.

His BUN (blood urea nitrogen) test indicates elevated kidney function. The RN suspects it's because he's not drinking enough, which is highly probable, given the restrictions on his drinking (only thickened liquids). So I've been charged with encouraging him to drink more.

We saw the radiation oncologist and resident this afternoon. They're pleased with how Steve has reacted so far to treatment. They are as ready as we are to step down the Decadron. That process begins today.

Now we're all home for the day. Cooper is reading aloud to Aunt Ami. Steve and Katie are cuddling and watching Charlotte's Web (the vintage animated version). We'll sit down soon to tortilla soup for dinner and try to stay warm!

Another week

Steve begins his second week of chemotherapy tonight. He's still doing well with the Temodar, with no obvious side effects.

Today was his first blood draw related to the chemo. The lab results will indicate how well his blood is reacting to the medicine. We're especially praying for high platelet counts. If his counts have dropped significantly in the first week, they'll most likely have to pull him off the Temodar.

He can now see just one of everything when looking to the left and to the front a few feet. The double vision on the right remains. But he's feeling stable enough to go without his eye patch almost all day.

After his radiation therapy tomorrow, we'll visit with the radiation oncology doctors again. We're going to ask about slightly dropping the level of Decadron he's taking. The steroid side effects are mounting -- a rash on his abdomen and back, bumpy skin on his face, which is swollen. And that's just what we can see.

Aunt Ami is here for the week, taking care of all of us, which allows me some time to catch up on work projects, run some errands, maybe even see a movie with Steve this week!

Many of you have asked about Katie and Cooper. They are both handling the changes and uncertainty in their own ways. Katie is fascinated by Steve's scars on his head. She calls the stiches he had after the biopsy "healings" and often talks about how the doctors took the healings away. She likes to rub his head and asks almost every day, "Daddy, how are you feeling?"

Cooper, on the other hand, wants to know nothing about Steve's illness. It's his own way of coping, and we've been assured by a trusted play therapist who knows Cooper well that that's OK. If he asks questions, we answer them simply and truthfully. But he hasn't asked in a long time. He gets skittish when Steve and I talk about doctor's appointments, worried that maybe we won't be home when he wakes up in the morning (a casualty of us being gone for three out of six weeks in December and January). We don't hide the fact that Steve has many doctor's appointments. When we talk about them, though, we're careful to specify how long the appointment is expected to last and emphasize that we're not leaving the Dallas area.

I visited with the play therapist today. The appointment was a great comfort to me. She reminded me that children who grow up with no adversity, who never face challenges, often have trouble as adults coping with real life. Those who are forced to deal with illness, loss, financial hardship, other issues, often fare better. They're better prepared for grown-up challenges. She also reminded me that children who are loved and cared for have a sense of security that stays with them for life.

Treatment update

We are thrilled that Steve has not experienced any troubling side effects from the Temodar so far. He takes the anti-nausea medicine about 30 minutes before bedtime and then takes the chemo drug right before turning out the lights. He's not felt any discomfort.

Yesterday was the first day of the formal radiation therapy. Until yesterday, the machine was shooting X-rays at a crude target, aiming for the brain stem in general. Beginning Wednesday, the coordinates and paths were more exact. The noticeable difference so far is that the treatment time is longer and the table he lies on moves during treatment. His fatigue level is about the same, though he made it through today without a nap.

His double vision is improving some. He wore the eye patch very little today and worked on focusing better with both eyes.

His voice is still weak, some days more than others. It's hard to tell how much is related to the 10th cranial nerve weakness vs. the cold he's been fighting. When Dr. G (radiation oncology resident) examined him Tuesday afternoon, she still found no sign of pneumonia. And now that he's started chemotherapy, he's on a drug that is supposed to stave off pneumonia.

Through all of this, he's worked every day this week -- from home or one of his offices. He enjoys being around his colleagues, solving problems, focusing on something other than cancer. We are so thankful that his responsibilities allow him to work from home sometimes and to sit down most of the time.

Once again, we've made it through the week by relying on so many of you -- your time, meals, driving, cards, gifts, prayers, good wishes, offers of help not yet taken. Thank you!

Good morning

Steve made it through the night after his first dose of chemotherapy with no nausea! Hooray!

Unfortunately, he didn't sleep much last night. He was hot (it does feel like late spring instead of late winter), restless and thinking too much. He estimates he slept about two or three hours total.

Other symptom updates:
1. Double vision is still awful. He's wearing the pirate patch almost all the time now and is extra cautious when walking. He is unsteady on his feet but is able to walk slowly for a while.
2. His head pain remains at about a 2 (out of 10) while on extra-strength acetaminophen.
3. He's developed a congested cough. Dr. G (radiation oncologist) examined him yesterday after his radiation treatment and said she heard no crackling in his lungs. Today is the scheduled clinic day (when patients are examined in addition to receiving radiation), so the doctors will see him again.
4. His voice is still weak, with wavering moments of strength. He's drinking only thickened liquids through a straw now as part of the campaign to prevent asphyxiation. (Thanks, Jen, for your tutorial in swallowing issues!)

Steve just finished showering: "Good shower. I feel good. I feel strong. Oh, I'm so glad."

Big week ahead

Tomorrow is a big day, as Steve adds chemotherapy to his treatment routine. We're both anxious about how his body will react to the chemo on top of radiation.

So far, the fatigue from radiation therapy has been severe. The first night it hit him about 6:30 p.m. while the four of us were eating dinner together. He felt as if he just couldn't sit up any longer. But he hated to leave the table and go to bed before Katie and Cooper went to bed. He realized that he couldn't fight the fatigue any longer, though, and went to our room. Katie and Cooper followed him. As he was settling in, Cooper sang him a lullaby. Katie cuddled him. Steve and I both cried.

He worked in the Carrollton office Friday before his treatment. After we came home that afternoon, he rested for about two hours. The rest of the night was better, and he was able to enjoy a pizza dinner and movie night. (Bruce brought Night at the Museum for the boys to watch while Katie was sleeping and I was next door for monthly dinner and bunco.)

This weekend Steve has been taking naps or sitting down when his body tells him he needs it. He's still not getting enough sleep, though, which exacerbates his vision troubles.

We're not sure how his body will react when he adds the Temodar and other drugs to the mix tomorrow night. We hope he sleeps straight through the night with no nausea.

Home from first treatment

Steve is resting now after an eventful day.

After getting Cooper to school and Katie to preschool, we headed south to the cancer center. The imaging folks took care of him first, taking more MR images of his brain. The images showed some growth since the last UT-SW scan -- not surprising, as recent M.D. Anderson scans also had indicated growth.

Then we met with the radiation oncology resident (Dr. G) and her supervising doctor (Dr. A). While the formal plan for his radiation therapy isn't complete (they needed a recent MRI), they weren't comfortable with waiting any longer to begin treatment. So today they started him on radiation therapy based on 2-D mapping (instead of 3-D mapping). From what we understand, they are aiming for a conservative target now and will get closer to exactly what they're aiming for sometime next week, when the formal plan is ready.

While we were in the exam room, Steve's co-workers Lori, Ray and Wendy popped in to check on Steve. They were just in time to whisk us away for lunch, giving the doctors time to map out the temporary radiation plan.

After lunch, we returned to the cancer center, where Steve received his first treatment. He reports that it was quick and painless. The treatment continues now for about six weeks, every weekday. (He won't start taking the oral chemotherapy until Monday.)

Steve's voice problems apparently are caused by damage to the 10th cranial nerve, which is one of the most crucial of the cranial nerves. It serves the throat, larynx, trachea, lungs, heart, esophagus and most of the intestinal tract. He's lost most of his gag reflex and is at a high risk of asphyxiation. He may begin to have trouble swallowing thin liquids (apparently without warning), including water and juice. So we're using a product called Thick-It that thickens liquids without adding taste.

Thank you, Zita, for taking care of Katie after school, and Christie, for taking care of Cooper. We also appreciate all the good wishes for today and the many who have volunteered to help now or in the future.

Radiation tomorrow

We have a change in plans because of some worsening of Steve's symptoms. His voice has become weaker and more hoarse. His double vision, which had been improving slowly since the biopsy, got much worse overnight. His right side is tingly, a new symptom altogether. And he feels more fatigue than "usual."

He spoke with the neuro-oncologist's RN and the radiation oncology resident today. The resident decided to have him come in tomorrow for radiation, instead of trying to treat the symptoms with an increase of steroids.

He already had an MRI scheduled for 10:15 a.m. Thursday. He'll keep that appointment, and then we'll just wait around for the radiation therapy, whenever they can work him in. He won't start the chemotherapy until next week.

Thank you to the many of you who have already registered with our "Damm Family Helpers" site. If you're still interested, you can log in here. I'll be adding additional volunteer opportunities, especially driving shifts, over the next few days.

Getting ready for treatment

We spent much of yesterday and some of today at the cancer center, getting ready to fight the Damm Spot.

Radiation
We met the radiation oncologist who is directing the radiation therapy (as well as his resident, nurses and technicians). Dr. A has an interesting bedside manner. He's not unpleasant, just different than what we've become used to.

He told us, "The unfortunate thing about this tumor is its location." I sort of laughed in response -- as if the only thing bad about the tumor is its deep, dark hiding place.

When I asked how many of these tumors he's treated, he answered that an adult glioblastoma of the brain stem is "as rare as hen's teeth." Sadly, they do have lots of practice with children who have a similar tumor in a similar location.

Dr. A will determine the best kind of X-rays to use and work with others to map the best entry points for the radiation. We'll meet with him and/or his resident once a week so they can check Steve's symptoms and reactions.

Today Steve had a CT scan as part of preparation for the therapy. And he was fitted for a mesh mask that he'll wear during each treatment. The mask protects his face and ensures that he'll be positioned in the exact same place each day so that the radiation will be directed exactly where the doctors want it to go. It's crucial that the X-rays hit the bad cells and, as much as possible, avoid the good tissue. There are many risks with the radiation -- his vision could get worse, he could lose his hearing -- but they are definitely worth the potential outcome.

We'll return Monday for a simulation and Tuesday for the first day of radiation therapy. His standing appointment will be 3 p.m. Monday through Friday for 28-31 days.

Oncology
We also met Dr. M, the neuro-oncologist who will take care of Steve for many months to come.

She acknowledged that reaching a diagnosis has been messy and painful. She told us we'd never forget that pain and that she's eager to help us close that chapter. Now we start the next journey -- treatment. We both felt so encouraged by her candor, optimism and attitude.

She will oversee the chemotherapy and its effects. Steve will start taking Temodar next Tuesday night, a few hours after his first radiation treatment. He'll stay on that oral chemo for the duration of the radiation, every day including weekends. The day he stops radiation, he stops the Temodar.

Then he'll take a short break before starting monthly cycles of Temodar -- probably a week every 28 days for 12 months.

We're in for some rough weeks, we know. But Steve shows no signs of fear of the fatigue, potential increase in current symptoms, potential for new symptoms, possible nausea. We only wish we could start killing those rogue cells today!

Peace

Steve continues to get a little better each day. His chief complaints (not that he's complaining) are double vision, fatigue and headaches. His spirits were definitely lifted today by so many warm hugs and wishes from friends at church and visits from family members this afternoon.

Monday will be a full day with appointments at the Harold C. Simmons Comprehensive Care Center on the UT-SW campus. We should learn more about when treatment begins and what kind of schedule to expect over the next six weeks.

Today, for the first time since Dec. 11, I woke feeling a sense of peace and calm about Steve's condition and future. Both Melane and Julie had recently described similar feelings -- a calm after the storm.

I've had the chorus from one of my favorite hymns running through my head all day:

It is well, with my soul,

It is well, with my soul,

It is well, it is well, with my soul

I've always loved the song's message of hope and embrace it now more than ever.

Making life easier

As we focus our efforts on fighting the tumor (now officially known as Spot), we continue to give thanks for the countless selfless acts on our behalf. As before, this isn't an inclusive list -- my record keeping and memory are, understandably, not at their best right now! Please know that every act of kindness is making this journey much easier.

Jim, Betty and Jim: Took care of us during the Houston biopsy experience, providing hotel, meals, running errands, whatever we needed. Betty this week stayed with Cooper and Katie while we were in Houston. Brother Jim shuttled us from Hobby to the hotel this week. And he helped with projects around our house this weekend.

Ami: Arrived for the third time in four weeks -- this time with no notice -- to take excellent care of Katie and Cooper, leaving her own sweet family behind. She spoils us when she's here and ensures that the household runs smoothly.

Betty's Lunch Bunch friends: Paid for our most recent Houston hotel stay and meals

A group of anonymous donors from our church: Sent a generous check to help with expenses

Kelly S: She picks up laundry and returns the clothes the next day clean and folded

Melissa: Researched, purchased and shipped a spare car seat for our growing Katie

Mike: Helped Cooper craft his first Pinewood Derby car for Cub Scouts

Bruce the Boss: Helped with crowd control at this weekend's Pinewood Derby

Mary MT: Provided tickets to Houston and a pleasant ride to the airport

Sally: Flew us home Friday, allowing us to spend much of the afternoon with our babes

Jen: Showed up at our front door at the exact moment I needed a hug

Leslie and Stephen: Surprise delivery of fresh berries

Bledsoe staff and family: Continue to provide outstanding care and support to Cooper and our family

Transportation for Cooper: Beth B, Bill and Cathy, Christie, Laura, Liz and Layne

ECDP (Katie's preschool) staff and family: Offering a stable, loving environment for Katie

Don and the HCUMC staff: Instant availability, counsel and wisdom

Lori and Ray: Tracking down records, driving Steve home, keeping him involved with work

Children's and PFC friends: Who have been patient with Steve's status and available for research and advice

My many bosses: Who haven't yet complained (at least to me!) about sometimes missing deadline

Carolyn and all the DI moms: Took over the Destination Imagination team that I had been coaching

Mary and Lorrie: Took charge of our adult Sunday school class

Meals and more from: Jan and Lou; Mary MT; Zita and Andy; Lorrie and Tom; Kerri M; HCUMC choir; Jennifer and Ryan; Joel and Theresa; Carole; Debbie; Ron and Celeste; Nicole; Mary and Kevin; Layne and Liz; Holly and Bob; Will and Holly; Kris and James; Bunco girls (and I know I'm missing so many other excellent cooks!)

Help around the house whenever I've asked: Julie and Andy, Sharon, Beth B, Liz, Allison, Amy, Meghan, Denna, Betty, Will and Holly, Mel and Greg

Prayers, behind-the-scenes scheming, cards, advice, gift cards, letters, phone calls, notes, fruit baskets, books, stories of miracles, people to contact for advice on treatment and past experiences from many listed already and so many more of you