Since we've been home

The four of us spent a few days in Austin this week, enjoying family time at the Jones house -- home of Aunt Ami, Uncle Rich and cousins Sasha and Tara. My sister Melane and her family were there, too.

We all drove to Temple on Friday to spend some time with my mom, who is still in a nursing home. We were a huge crowd -- Uncle Tim, Aunt Cheryl and cousins Sarah and Trevor joined us. My stepdad Daryl was able to take his lunch break in time to join us all in the nursing home's conference room for a post-Thanksgiving Day lunch.

Steve did well on the trip. He spent his days eating, watching movies, visiting, napping and reading. (He's almost done with my favorite novel, East of Eden.) His left-side sluggishness and instability were about the same, though this weekend they seem exaggerated. He is getting headaches again with more frequency. And hiccups have returned.

When we came home Friday night, we were thrilled to see that someone had dressed up our house with Christmas lights. Some of the Spiritual Journeymen (a men's group at our church), decorated before we came home. Cooper and Katie are so proud to have lights. Thanks, guys!

Cooper and Katie woke up Saturday with awful coughs, so we headed to pediatrician's office. They both have colds but thankfully no strep. Later we decorated the inside of the house. One of my favorite days of the year is the day we hang the stockings, pull out the annual Santa photos, rediscover favorite ornaments.

We enjoyed dinner at Jim and Betty's house Saturday night.

Steve had trouble sleeping last night, so he headed to the family room to read. Katie stumbled out at some point, and they cuddled on the sofa. Then he took her back to her room. He laid down with her for a while. When he got out of her bed, he fell. He crashed into her wooden dollhouse, cutting his mouth and bruising his side.

Now he's back in bed, just a few pages from the end of East of Eden. He's taken pain relievers for his headache and the aches from falling. We hope he's able to nap this morning.

The week ahead may give us some answers on the larger mass in his brain stem. Steve's PET scan is scheduled for 9 a.m. Monday. We don't expect results right away -- probably by the middle of the week.

He has an appointment to have the chemotherapy port placed on Wednesday morning.

We have many specific prayers today.

• That Steve's symptoms stop increasing
• That he doesn't feel pain after this early morning's fall
• That the results of the PET scan show treatment-effect growth, not growth related to new tumor activity
• That, no matter the results of the PET scan, we are able to find treatment that will reduce the size of the Damm Spot

Thanksgiving

A year ago, Steve, the kids and I were in Austin with family, as is our annual tradition.

Steve had been experiencing strange symptoms -- headaches, difficulty swallowing, slurred speech, frequent hiccups. He and I were concerned but not overly so. We agreed that he should call his primary care physician as soon as we returned to Dallas. We had no idea what was in store.

Our Thanksgiving list is so much longer this year than any year past -- partly because we've been enveloped by the world's greatest support group and partly because we're even more aware of the blessings we had all along.

We're back in Austin now. After almost a year of battling cancer, our lives are drastically different, and yet they are comfortingly the same. Same traditional Thanksgiving dishes, same joyous sounds from the four young cousins, same sense of family, same feeling of God's love. The blessings are amplified. And we are so thankful.

Some of you shared what you're thankful for this year. It's a beautiful list.

People who reflect God's love
-- Cheryl B.

Friendships during the holidays
-- Kris B.

Friends and family
-- Shannon R.

The support, the love and the prayers shown to my family over the last year
-- Natalie W.

The laughter of my children and the love I feel from Jeff the minute he walks in the door. I am thankful for this very moment of my children's lives and the joy it is to raise them. I do not want to speed up one minute of it, yet I don't really want to slow it down either. I am just thankful for the moment!
-- Melanie D.

My family, my husband and our two precious, precious little boys. And for friendships I never thought I'd have or deserved -- so, so grateful.
-- Jamie H.

The power of God that gives us courage to meet the toughest challenges with grace and confidence. And to actually find joy along these sometimes-rocky roads.
-- Sharon G.

Family, friends, employment and a roof over my head
-- Jennifer P.

My two children, my grandchildren, my health and my job
-- Leti D.

God's promises: "I have told you these things, so that in me you may have peace. In this world you will have trouble, but take heart--I have overcome the world." (John 16:33)
-- Armayor family

I am so very, very thankful that: I live in a country in which I don't have to worry daily about my physical safety and that of my family; I can readily find affordable food to eat and clean water to drink; I have the freedom to worship God in my church; I have the right — as a woman — to work, wear and say what I want and have a voice in society and government; I know that my children, both my boy and my girl, will have a publicly funded education in a safe, heated building, without fail, August through May. I am profoundly grateful for all these things because I know most people in the world can't say the same.
-- Jennifer S.

All our caring friends who have stayed by our side this past year and for Stephen, Tyra, Cooper, Katie, and Jim, whose love and positive attitudes have continued to bless all the lives they have touched. Each new day is a gift. I am humbled with gratitude.
-- Betty D.

My family (especially my beautiful wife), good friends, music, laughter, hope, faith, memories, freedom, helping hands, warm blankets on cold nights, good food ... just to name a few.
-- Andy F.

Family and good friends
-- Liz S.

Giving thanks

We are surrounded by the kindest souls. I'd love to share with everyone else what you're thankful for.

E-mail me by 10 p.m. or so Wednesday with one word or one sentence: What are you thankful for this year?

I'll post the thankful list Thursday. If you want to remain anonymous, let me know and I'll leave your name off.

E-mail me at tyradamm@gmail.com.

Shirt reminder

If you'd like to order a See Spot Run T-shirt or tech shirt and haven't already done so, please e-mail Liz Smith at runforsteve@gmail.com right away!

Click here for full details.

Waiting

We're back in a familiar place -- waiting to hear from doctors.

Some correspondence with Dr. M and her office this weekend has the possibility of excellent news. One doctor looked at the MRI on Friday and thinks the growth is related to effects from radiation.

Based on that reading, apparently, UT-SW has slowed down this week's appointments. Steve is not getting a port placed in his chest today. The PET scan may be tomorrow, Wednesday or next Monday.

We would be beyond thrilled if the growth is treatment related. We'll both feel much better when there are PET scan results that show what kind of activity is taking place in the Damm Spot.

Still, until the mass gets smaller, Steve will continue to struggle with his latest symptoms. If the growth is related to treatment effect, will it just get smaller on its own? We have no idea.

So, we're about where we were Friday, but with more hope that the tumor isn't growing because cancer cells came out of dormancy.

Steve rested most of the weekend, enjoying food deliveries, very short visits with friends and lots of cuddling with his family and furry Margie.

UPDATE: Steve's PET scan is now scheduled for 9 a.m. next Monday.

Good cheer

Katie and Cooper before church last Sunday

Rough day

The MRI shows that the tumor is bigger today than it was four weeks ago.

What is not clear is what has caused the growth. Dr. M says it's 50/50. It could be treatment effect, meaning there is new mass because of the chemotherapy. (I still don't completely understand this.) Or it could be new tumor cells.

Either way, the Spot is bigger on the right side. It is taking up more space on the right side of his brain stem, which is causing his left-side weakness.

In the past, the symptoms he's had were controlled with Decadron because inflammation was causing the problem. Today the problem isn't as easy to treat. It is the tumor that is causing the problem, and steroids don't make tumors smaller. Until we find a way to make the mass smaller, he's going to struggle with left-side weakness and instability.

So we need to make the tumor smaller.

Unfortunately, it looks like Temodar, the oral chemotherapy he's been taking since February, is no longer going to work. It's either causing too much damage or the tumor cells have become resistant.

The next line of defense will most likely be a combination of Avastin and CPT-11. I'll explain more about this protocol soon. From what I understand, Avastin is a biological therapy that attacks blood vessel growth. CPT-11 is chemotherapy.

The drugs are given intravenously, once every two weeks. Steve will need a port placed in his chest to allow access. There is no way his fragile veins will handle frequent IVs.

Our prayer is that those two drugs will start attacking the tumor, taking care of what Temodar no longer can.

We're not there yet, though.

Just after our appointment with Dr. M, she was headed to the UT-SW tumor board meeting. That's when a bunch of doctors look at scans and listen to other doctors present symptoms. All those great minds work on identifying problems and creating solutions.

She wanted them to look at today's MRI to see if there's consensus on what is causing the growth.

Then she was going to call or e-mail Dr. C, our neuro-oncologist at M.D. Anderson. She'll share with him Steve's current status. Her office is also overnighting Steve's scans on disk to Houston.

They will confer on options. They will discuss whether Steve needs to be seen in Houston. There's a chance that Dr. C knows of another drug trial that would suit Steve's condition.

Steve has an appointment for Monday morning at UT-SW to have a port placed in his chest. We think this is a place-holder appointment, so that if they decide Monday morning he needs to start the Avastin-CPT-11 protocol soon, he'll be ready.

He also has a PET scan scheduled for Wednesday morning. His first and only PET scan this summer showed no live tumor activity. The new scan should show us more clearly what is going on.

We knew that one day we'd deal with this. We've known since we started this journey that there is no known cure for brain cancer, that those tumor cells hide out and come back. We know that you joined us in praying that that day would be years and years from now.

Dr. M told us that this "is not the bottom." She agreed that the news is bad news, but she pleaded with us to not expect the worst. Avastin and CPT-11 have high response rates. They eat away at tumors. We have every reason to believe that this next round of treatment will be successful.

I would be lying, though, if I told you we are feeling good about today.

As we head into Thanksgiving week, we count our many blessings and we continue to pray for a miracle.

Steve and Katie at her preschool feast this week

Little improvement

Steve isn't feeling much better today. Typing with his left hand is still frustrating at best. He's wobbly. He's much more tired today than yesterday. He has e-mailed Dr. M and her staff requesting an MRI. I expect we'll hear back this afternoon with an imaging appointment for tomorrow.

Thank you for your love and concern.

UPDATE: Dr. M's office called and has scheduled an MRI at 9:15 a.m. Friday, followed by an appointment with Dr. M at 11 a.m.

Hoping for a virus

Almost a year ago, before Steve's cancer was diagnosed, we were in the strange position of praying for MS or lymphoma -- anything was better than a brain stem tumor, we were told.

Today we are praying that Steve has a virus or something else that can explain his current, sudden left-side weakness.

We saw Dr. M this afternoon. His blood tests look stable -- the counts are about the same as last week. And it took only one stick to get the blood. Yay!

She is concerned that his current symptoms (instability, left side slow to respond, some slurred speech) came on so quickly and weren't resolved completely by increased Decadron. He normally takes 2 mg daily. Yesterday he took 3 mg. By the end of today, he'll have taken 4 mg.

When he wakes up tomorrow, we'll assess how he's feeling.

The first prayer is that he'll wake up and feel "normal." That would indicate that his body just needs a little boost right now.

If he's not feeling his usual self (relative to having a brain tumor and being in the middle of long-term chemotherapy, of course), our next prayer is that he has a virus. Dr. M says a virus would explain his body being "off." Just a little glitch can cause some big changes in his overworked body.

If we're not satisfied with either of those options, Steve will most likely have an MRI Thursday or Friday to rule out any changes in the brain that would be causing problems. He's not scheduled for another scan until mid-December.

We also discussed some other symptoms. Steve has been more scatterbrained lately -- something I've observed for a few weeks and Steve noticed on his own recently. She's not too worried about that. His brain has been fighting the tumor for a while now, and he's been taking a lot of prescription drugs for almost a year. Forgetfulness could also be a long-term effect of radiation therapy.

She did take note of an incident a few weeks ago in which Steve zoned out and didn't seem aware of what was going on around him. There's a slight possibility that it was a type of seizure. He hasn't had a similar experience since. We're praying that it was isolated.

While we were in the office, Steve's face became bright red, as if he developed a sunburn in 15 seconds. A nurse checked his temperature, which was a degree higher than an hour earlier. He remained flush for the rest of the visit. Dr. M thinks his body might have trouble regulating temperature -- another symptom of long-term brain stress and medication. This will be one of many considerations as we evaluate each month if he'll start another cycle of chemotherapy. The goal is to fight off the tumor cells as long as possible while also keeping him as healthy as possible. It's one of the many balancing acts we've been working on.

Dr. M strongly suggested that Steve stay home from work tomorrow and possibly Friday. She stressed that his brain is busy healing and that his body needs plenty of rest.

The visit wasn't as dreary as I realize this post sounds. We don't have reason to panic. We just need to be cautious and aware of Steve's symptoms, and he needs to slow down when his body insists.

Sluggish

Steve woke up today with a very sluggish left side. He's having great difficulty moving his left arm, and he's more wobbly than normal. Of course, not even those symptoms kept him home. He was at work before 7:30 a.m. for a meeting. (Thanks, Layne, for driving!)

His regularly scheduled monthly appointment with Dr. M is tomorrow. They'll draw blood, review his counts and symptoms and discuss starting Cycle 8 of chemotherapy.

In the meantime, Steve is going to increase his steroid by 2 mg for today, hoping to see a quick improvement.

We appreciate your prayers and good wishes!

See Spot Run T-shirts

The Dallas White Rock Marathon is just a month away. Even if you're not running, you can wear a See Spot Run T-shirt, to show your support for Steve and his honorary runners.

The shirts are yellow and will have art something like this (we're working on adding Steve's name somewhere to the logo):

You have two options: a moisture-wicking shirt for $19 (in unisex sizes small to extra large) and a typical cotton T-shirt for $6 (in youth sizes small to extra large and unisex adult sizes small to XXL).

If you would like to order a shirt, please e-mail Liz Smith at runforsteve@gmail.com. All requests are due Nov. 24.

Special thanks to Uncle Jim's friend, Angie, for designing the art and producing the shirts. Her company, T's Awards and More, is charging for only the cost of the shirts.

Home safe

Steve returned late last night from a quick trip to Austin. He returned with shiny teeth and a new hairdo, thanks to the Jones family. He even slept past 7 a.m. There were no adorable children climbing into his bed at 5 a.m.

We had a slight scare the night before he left -- his temperature was elevated. He's normally about 97 degrees. Wednesday night he was 99.4. We've been instructed that a slight fever is actually a high fever in his case because Decadron often masks symptoms of infection.

He paged Dr. M, who responded in less than two minutes. She advised that we watch for other symptoms or a higher reading. Thankfully, his temperature dropped by the end of the night, and he had no other viral symptoms, so we didn't need to make a second call.

His fatigue level is high, and he looks especially wobbly to me this week. We're learning to expect these symptoms with continued chemotherapy, which will last at least five more months if his blood counts cooperate.

We're looking forward to one of our favorite church services of the year -- a Thanksgiving service Sunday night with Christ's Foundry United Methodist Church and sponsoring churches (including ours) at Lovers Lane UMC. Thanksgiving has always been my favorite holiday, but this year it takes on even greater significance. Our gratitude list grows daily.

Steady

I haven't updated on Steve's health in the past few days because, thankfully, he's feeling about the same. Even though he continues to deal with symptoms of the tumor and all his medication, we take that as great news!

Some updates:

• Steve loved all the birthday wishes that poured in. (I had asked members of our Lotsa Helping Hands site to send cards in the 40 days leading to his 40th birthday. You all delivered! Almost every day for six weeks, he received at least one birthday card -- sometimes five or six.)

• Neighborhood traffic slowed in front of our house on Nov. 4 to see a yard full of Steve images. Betty put together dozens of signs with old Steve photos, and I planted them in our yard before dawn. (They were also in Jim & Betty's yard on Sunday morning, when Steve and I arrived for his family party.)
• Chemotherapy should begin again today, pending results from this morning's blood tests. The tech who did such a great job last week had more trouble today, requiring three sticks to get a good sample. Steve just has awful veins, worsened by all his current meds.
• Steve is flying to Austin on Wednesday for a dental appointment at Uncle Rich's office and a haircut by Aunt Ami. He'll be home Thursday night.
• We're planning a summer vacation to London to celebrate our 15th anniversary, Cooper's 8th birthday and Katie's 4th birthday. We cashed in all our American Airlines miles and took thousands from Jackie (thanks, Jackie!). We welcome any travel hints about London and suggestions for day trips.
• The Dallas White Rock Marathon is 34 days away! We look forward to seeing many of you running as part of the See Spot Run team and others cheering along the route or at the finish line.

Brain Tumor Walk and Angel Adventure

One of my college friends and amazing mom to three children, Jenny Holland, is walking Saturday in a National Brain Tumor Foundation walk. The Brain Tumor Walk and Angel Adventure raises money to help fight brain tumors.

Jenny has been deeply affected by brain tumors. From her fundraising page:
On a personal note, I am walking in this fundraiser for many reasons: My mom, who died of a brain tumor 20 years ago; Roger Rainey, a friend and Birth and Women's Center's accountant who was diagnosed earlier this year, and Steve Damm, husband of a college friend who also was diagnosed in 2008.

Thanks, Jenny!

To contribute, click here.

Slow news is good news?

For months, Steve has had his blood drawn at one of the clinics where he works. There are many great advantages -- fewer trips to medical offices, good people who take care of him and reliable access to the results.

The past two weeks, though, I've taken him to a lab between our house and his Plano office. The main drawback is we don't see the numbers until his oncologist's office decides to share them.

We've learned that if oncology doesn't reply quickly with results, they're most likely within an acceptable range. Still, I tend to worry until I see actual numbers.

Today we received results from Monday. The counts that were low last week are still low, but none of them are dangerously low. His lymph count still warrants that he continue taking Bactrim, a routine antibiotic used to prevent some infections.

This is his week off chemotherapy, so we assume all those blood cells are recuperating and preparing for another round of poison next week.

---------------

Please note that I've added a link on the right side of the blog to other friends who are in need of prayers and good wishes.

Eric, an editor at the Morning News, was seriously injured in a pedestrian/car accident this weekend.
Young Willie, the son of a former co-worker, continues to recover from falling from a third-floor window.
Mandy, the daughter of a former co-worker, has been battling Neurofibromatosis most of her life and is undergoing chemotherapy for brain tumors.
Alex, the son of one of Steve's fraternity brothers, this week will mark three years since being diagnosed with stage IV Neuroblastoma.
Connor, a friend of friends, has also been fighting Neuroblastoma.

We all are surrounded by sweet reminders that life is a gift and health is a true blessing.

I discovered a quote a few weeks ago that I try to remember throughout the day:
"Be kinder than necessary, for everyone you meet is fighting some kind of battle." (Anonymous)

Happy 40th birthday, Steve!

Thanks to super friend and neighbor Julie who created the video and to multitasking, celebration-planning Grandma Betty for many of the photos!

Counting down to 40, Part IV

Steve's fourth decade, when he became the world's best dad

Counting down to 40, Part III

From Steve's third decade (it was hard to resist his fraternity photos, but they aren't exactly representative of the whole decade)

Counting down to 40, part II

Sometime in his second decade