Steve loves a parade

Last year for the first time our family of four attended the Neiman Marcus Adolphus Children's parade in downtown Dallas. The Smith family has been going for years, and they invited us to join in their tradition.

During last year's parade, we had no idea how ill Steve would become. We were just days away from the MRI that showed the tumor. We loved the parade and talked about it all year long.

With great faith, we bought bleacher seat tickets again this year. (Anyone can go to the parade for free, but the bleacher tickets guarantee a spot with a good views.)

Two weeks ago, before we knew that there was new tumor growth, I started worrying about how Steve would walk from the parking lot to our seats outside City Hall. I contacted Jessica with the Children's PR department (Steve works for Children's) to ask if she could help us solve the problem.

She didn't hesitate to offer a golf cart.

After we learned Tuesday night that the Damm Spot is growing with live tumor cells, we weren't sure if Steve would make it to the parade. We were even more unsure Thursday, after he received Avastin and CPT-11. He was so exhausted -- we didn't know if he'd even be able to leave the house.

But, as you know, Steve is determined.

He rested all day Friday and skipped a neighborhood party so he could store energy for Saturday morning.

He woke up Saturday feeling strong enough to go, so we bundled him up, picked up his parents (Kris gave us extra tickets) and drove downtown.

As promised, Jessica (who had many important tasks that day) picked us up and dropped us off at our seats. The six of us sat in the first two rows and enjoyed the joyous parade.

Steve smiled more than any of us. He kept saying, "I'm so glad I'm here."

Cooper and Steve

Katie

Steve has a soft spot for marching bands (he played trumpet in marching bands for W.T. White High School and the University of Michigan), and clapped especially loud for all the kids who performed just feet in front of us. He hollered a lot, too -- not an easy task with his raspy, faltering voice.

When the parade ended, most folks walked away from the plaza quickly. We waited for the crowds to thin and for a plan to get Steve back to the car. (Ack! I hadn't thought about how to get him back!)

Cooper and Grandma

Hero Layne Smith took charge. He asked around until he found a golf cart. The Children's volunteer wasn't sure how to drive it, so she scooted over, and Layne took the wheel, driving most of our party back to the car.

Steve, Layne, Katie and Papa

We are incredibly thankful for everyone who helped us get to and from the parade. We are even more thankful for miracle drugs that allowed Steve to feel better after less than two days of treatment.

Steve is tired again today, probably in part because of our morning outdoors. His voice is extremely weak. But his spirits were bolstered by watching a Christmas parade with his family, by continuing a tradition we started just a year ago.

Steve and Tyra

Signs of improvement

Steve has been resting since we came home yesterday. He is exhausted, possibly the most worn out he's been for the past year.

He has not had any adverse side effects, though. Isn't that wonderful?!

Even more encouraging: He's showing signs of improvement. He has been able to wiggle the fingers on his left hand for the first time in days. With some effort, he's able to lift his left arm higher than his shoulder.

We pray that the decreased symptoms are directly related to the Avastin and CPT-11 combination and that symptoms continue to improve.

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Speaking of prayer ...

Our friend Jamie H. has proposed a challenge. Here are her words:

I'd like to repeat a small message I sent to Tyra a few weeks ago. A challenge, maybe. During our church services a while back our pastor asked everyone in the congregation to shout out their own names; after the count of three a very loud, undecipherable noise burst out. Then he asked that we all shout out Jesus at the count of three. And the sound was clear, crystal. This exercise was supposed to show how much more clearly we can be heard by God when we shout in unison. I would like to suggest that everyone say a prayer for our dear, dear friend Steve at noon each day for the next week. That gives everyone a chance to pray in unison, a collective shout for Steve and the entire Damm family ...

Worn out

We are home from Steve's first dose of the first cycle of Avastin and CPT-11.

Resting in the infusion room, waiting to be released

Steve has had no adverse side effects so far! He is exhausted, though. He napped for about an hour. He's now sitting up in the comfy green family room chair with closed eyes, listening to Cooper read a G.I. Joe comic book aloud to Grandma.

He'll keep a low profile tomorrow, watching for signs of nausea. He also needs to be extra cautious with his balance. Dr. M says that fatigue, stress, medications and now the new treatment PLUS the growing tumor are affecting his balance and left-side sluggishness. He needs to get caught up on sleep and let his body rest so he can be safer when moving.

This week wouldn't have been possible without help from so many selfless friends and family members. No one has hesitated to help with Cooper and Katie or to help around the house or to bring food. Thank you for making our lives easier.

Live from the infusion room

Steve has been reclining in an infusion chair for more than three hours and is doing well.

His nurse was able to draw three vials of blood from his new port -- so much easier than the needle sticks he usually endures. Those labs showed that his counts are enough in range to start the new treatment plan.

We reviewed possible side effects and remedies with Dr. M and again with a pharmacist. Then they started him on a saline solution, Decadron and anti-nausea meds.

The Avastin drip began sometime after 10 a.m. That will be followed by the CPT-11 (chemotherapy) drip.

The room is comfortable. We have a television with VCR and DVD player (he's watching Major League right now) and three visitors' chairs. We've already hosted our first guest! Pastor Andy spent more than an hour with us and closed our visit with a beautiful prayer.

A few steps away is a refreshment room, stocked with juices, Ensure and Boost. (Steve prefers Boost -- he thinks it's more youthful than Ensure.)

Steve is layered with warm blankets. He's wearing a gray stocking cap and maize and blue gloves (Go Blue!). He looks "cozy rosy," as Dr. M said when she walked in.

Dr. M expects that Steve will be severely fatigued tomorrow and perhaps throughout the weekend. By Monday he should be feeling much better, she says.

Home for a few hours

Steve and I arrived home this afternoon just in time to greet Katie coming home from preschool. (Grandma Betty almost always picks her up for us, driving three days a week from North Dallas to Carrollton to Frisco and back to North Dallas.)

Steve has rested this afternoon and is starting to hobble around a little now. He is so much more unstable today than just two days ago. Part of that may be because of poor sleep the past two nights, despite sleeping pills. The poor sleep may be in part because of the increased steroid dose. He's up to 6 mg of Decadron a day -- a huge jump from the 2 mg he'd been taking for months.

We are eager to get this next treatment started and to see some results. We expect to spend most of Thursday at the UT-SW cancer center: labs, meet with Dr. M and then the introduction of toxins begins!

I'm happy to report that Steve's sense of humor is still intact. Of course, he's emotional about this latest turn. But he never fails to amaze me with his wit and appreciation for the quirky.

I want to share two things that always make us laugh.

First: A riddle that Cooper "invented."
Why are thermometers so good in college?
Because they have so many degrees.

Second: A video of Katie dancing a couple of weeks ago.

Live from St. Paul: Looking good

Steve has just been wheeled back into the private prep/recovery room. The RN reports that he did well. He's awake and lucid (maybe just a little loopy) and about to drink water for the first time since last night.

Live from St. Paul

Steve and I are on the sixth floor of St. Paul University Hospital. Betty just arrived, too!

St. Paul is the site of great moments in Damm family history. Cooper was born here in July 2001, and Katie made her debut here in June 2005. Will, our dear friend who introduced us, was born here in May 1969.

We're in a room on the cardiac floor. Nurses have reviewed his medical history and have hooked him up with a Heparin lock for the IV he'll have going during the procedure.

He'll be in the procedure room for about an hour, where they'll place the port in his chest. (We keep saying "installed," but that makes him sound more like an automobile than a person.) He'll return to his room, and the staff will monitor his vital signs for an hour or two. Then we should be able to go home.

Growth

Dr. M called early this evening to tell us that the PET scan shows that the enlarged mass is the result of tumor growth.

She said that everyone was shocked. No one expected this.

She said that this is bad news. (Deep breath.)

Now, let's move on to how we're going to keep fighting the Damm Spot.

Steve will report to the invasive cardiac center at St. Paul on Wednesday morning. The folks there will place a port in his chest. The port will allow convenient access for the drugs he'll receive every two weeks to chip away at the tumor.

(When the St. Paul scheduling people call, they remind Steve to make sure someone drives him home after the procedure. That always makes us giggle -- he hasn't driven for almost a year.)

On Thursday morning, we'll report to the UT-SW cancer center. Steve will have blood drawn, and then we'll meet with Dr. M and her team to go over the new chemotherapy regimen.

Then we'll be ushered to a private infusion room. He'll settle into a recliner and begin receiving Avastin and CPT-11 through the new port.

Avastin is the drug that affects blood vessels. CPT-11 is a form of chemotherapy. The combination is about 70 percent effective in fighting brain tumors. There are side effects and risks with both, but the risks are worth the potential benefit.

Steve will return every other week for the infusion.

We never expected to be at this point this soon. We were praying for a few more years before we needed to start using this second line of treatment.

Now that we're here, we are committed to devoting our strength and faith toward fighting the new growth. We are committed to celebrating how far we've come.

For some perspective: Sharon was at the house tonight. She took Cooper to his Cub Scout meeting and then visited with Steve and washed dishes, including our Spode Christmas dishes. She reminded us that about a year ago she was at the house, visiting with Steve and washing dishes, including our Spode Christmas dishes.

Steve is almost a one-year survivor of a Grade IV glioblastoma in the pons of his brain stem. To borrow a phrase from the late Rev. Kathleen Baskin-Ball, "Glory be!"

Please join us in giving thanks that we have come this far. And join us in praying that the next line of treatment will obliterate the Damm Spot.

No news yet

We haven't yet heard PET results from Dr. M's office. Steve didn't receive a call to start Avastin today, so we're assuming that the injection will begin tomorrow.

I'll post when we know more.

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Beloved minister Kathleen Baskin-Ball passed away this morning at her home. She served three years at our church, long before we were there. She left a huge imprint on our congregation's spirit. She most recently led Suncreek United Methodist Church in Allen.

To hear Kathleen speak was to be wrapped in warmth. There is no doubt that she was chosen by God to inspire, share and preach.

I interviewed her for a Dallas Morning News article in December 2006, days before her cancer diagnosis. She shared her favorite biblical verses. Here is the Kathleen excerpt that ran:

Romans 8:35 and 37 (New Revised Standard Version)
"Who will separate us from the love of Christ? Will hardship, or distress, or persecution, or famine, or nakedness, or peril, or sword? No, in all these things we are more than conquerors through him who loved us."

The Rev. Kathleen Baskin-Ball said this passage, which she returns to often, is appropriate for funerals, but also for folks struggling with deteriorating relationships, troubles with children and other conflicts. "It's a passage that can be read in the midst of life, wondering if the love is ever going to rise again. We sort of wonder sometimes, with war, starvation, hunger, Is God at work? It says to me and the faithful, there is nothing more powerful than the love. Nothing can separate us from it."

The Rev. Kathleen Baskin-Ball
Senior pastor
Suncreek United Methodist Church, Allen

Everyone is voting for necrosis

Steve's PET scan was uneventful this morning. I took Cooper to school, Liz picked up Katie for the morning, and Steve and I headed south for the cancer center. He was injected with a radioactive tracer (just one stick!), waited a while and then rested in a scanning machine.

Dr. M expects to receive results late today or early Tuesday. She says she'll call us when she gets the reading. The scan will tell us if the enlarged mass is live tumor activity.

We spoke with Dr. M yesterday to let her know about Steve's worsening symptoms. She spent a while on the phone explaining what the doctors agree on so far.

Everyone believes that the growing Spot is the result of radiation and chemotherapy. The technical term is necrosis. Necrosis is when healthy tissue and cells die. So, all the consulting doctors think that the treatment Steve has received so far, which was absolutely necessary, is also what has caused healthy cells to die.

It's impossible to know from an MRI. (A biopsy is the best way to be sure, but there's no way that's going to happen again.) But all the doctors and UT-SW and M.D. Anderson feel certain based on the timing of his returned symptoms and the location of the dead healthy tissue.

The PET scan will confirm their theory.

It will be fabulous news if the tumor itself isn't growing. Still, there is the issue of the healthy tissue dying. The brain stem is small but controls all the nerve and sensory systems. A little change in the brain stem can cause big changes in the body. Steve can't afford many more little changes.

So, the next issue is how to stop necrosis.

Dr. C at M.D. Anderson recommends the use of Avastin. Avastin was first used to extend the life of colon cancer patients. It is now used for a number of cancers. (Use for brain tumors is considered "off label." Dr. M's office has already started working on pre-authorization from our insurance company. So far, our United HealthCare plan has been awesome. They have covered more than we expected.)

Avastin works by affecting blood vessels. The hope is that Avastin will stop capillary leaks at the site and therefore stop the deadness from spreading. (Another hope is that I'm explaining this correctly!)

Steve will begin taking Avastin tomorrow or Wednesday, we think.

He is scheduled to have the port placed in his chest Wednesday morning. If it's possible to begin using the port the same day as placement, they'll start using it then to administer Avastin.

If medical providers think it's not a good idea to start using the port right away, they are going to try to get him scheduled for an IV appointment Tuesday, and he'd start Avastin then. Avastin is given every two weeks. We need it to start working right away!

Steve will also continue taking Accutane. (As a reminder, the high dose of Accutane is used to trick the cancer stem cells into behaving like regular ol' cancer cells.)

He will not be on an official chemotherapy for now. The doctors agree that the Temodar has outlived its effectiveness.

If the tumor cells do start growing again, he'll most likely start a second chemotherapy (CPT-11).

Recap:
1. We're waiting for the PET results to confirm that the enlarged mass is necrosis.
2. We're waiting to find out if Steve will begin Avastin on Tuesday or Wednesday.
3. We're praying that the Avastin will do its job quickly and relieve Steve of his worsening symptoms.

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I've been keeping track of thank-yous on the upper right side of the page. Yesterday was an especially eventful day here.

Bill K. spent about two hours in the front yard, trimming bushes (Cooper assisted with raking). Jim and Betty came over so I could grocery shop. While they were here, they played with Katie, helped Cooper with a school project and picked up the kids' rooms. Jeannie D. came over at night so I could run eight miles with Allison (the half marathon is two weeks away). And an unnamed elf left two small Christmas trees on the front steps -- one for each child to put in their rooms.

We are so blessed. "Thank you" just doesn't seem sufficient some days.

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

Counting down to 40

Steve turns 40 on Nov. 4!

As much faith, hope and determination as we have had since his first MRI last December, we are still relieved beyond description to be celebrating four decades of Steve.

From his first decade

A little low

It took two days and eight sticks, but enough blood was finally drawn for an adequate sample.

Yesterday Steve sat through seven needle sticks, yielding one vial of blood, not two. And that vial wasn't handled exactly right, so there were no valid results -- just a whole bunch of bruises on his arms.

So today he tried again. Thank goodness the lab tech got a vein in the first try.

Some counts are a little low -- red blood count, hemoglobin, hematocrit. His lymph count is low enough to warrant another round of antibiotics. He'll begin taking them Wednesday night.

He has been worn out the past few days. We're continuing to choose which activities he can handle and which he needs to avoid.

Cooper and Katie are so flexible and understanding. This weekend, for example, I took them to a special breakfast out and then to a Cub Scout event. I was hesitant to take Katie, thinking she wouldn't enjoy an outdoor event geared toward elementary-age boys. But Steve and I didn't think it was a good idea to leave her with him. He was just too tired.

After a special pancake breakfast

Katie had a wonderful time at the Scouting event, proving that I need to have a more open mind about what she can handle. She launched a rocket, shot at a target with a Nerf bow and arrow, painted a rock, flew paper airplanes and completed an obstacle course. Cooper did all that and more. We missed Steve, but we also enjoyed telling him about our adventures later that morning when we picked him up and took him to Cooper's soccer game.

Flying paper airplanes

Weekend love

At Cooper's soccer game Saturday morning

At Central Market on Saturday night, enjoying a late dinner outside

Excellent news: Detailed version

Steve's MRI this morning shows:
1. There are no new cancerous areas.
2. There is no growth on the current tumor.
3. The cystic part of the tumor is ever so slightly smaller.
4. The swelling and disturbance around the tumor is the same size.

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

Steve did well with both needle sticks -- one for contrast media during the MRI and another for the blood draw. Both techs needed just one stick to get in each time.

Dr. M was, as always, positive and encouraging.

She explained that the cystic part of the tumor (the inside of the whole bad Spot) is a tiny bit smaller. The swelling around the tumor, which shows up as a sort of cloud on the MRI, is the same size. Steve's brain is continuing to heal, slowly ridding itself of the dead tumor cells. We expect that to continue and eventually for the disturbed area around the tumor to get a little smaller, too.

To keep attacking the cancer, Steve will continue taking chemotherapy. We're hoping for at least six more cycles -- seven days on, seven days off. He'll start cycle seven on Monday. As we expected after last week's drop in counts, the Temodar dose will be lower. He'll be back to 200 mg instead of 240 mg.

We'll return at the end of cycle seven for a routine check-up. The next MRI will be the week before Christmas. My list for Santa will be very short, and I'll ask for early delivery!

Steve has lost three more pounds since last month's visit with Dr. M. He's about 15 pounds lighter than his typical pre-cancer weight. I'm going to add protein powder to his morning smoothies and pack him a snack for work every day to help maintain his weight.

Steve and I celebrated the awesome MRI news with lunch out. Then we picked up Sprinkles cupcakes for all four of us to enjoy later today. (As a bonus, maybe Steve will gain a pound today!)

Another excellent scan

Steve's MRI this morning shows:
1. There are no new cancerous areas.
2. There is no growth on the current tumor.
3. The cystic part of the tumor is ever so slightly smaller.
4. The swelling and disturbance around the tumor is the same size.

Such great, welcome, amazing news!

I will update later today or tonight with more details. Thanks for your prayers and support!

Expecting good news

We'll be up early Wednesday morning to get Cooper and Katie ready for school and drop them off at two different houses to await transportation. (Thanks, Celeste and Zita!)

Then Steve and I will head south to UT-Southwestern for Steve's next MRI.

We don't expect anything but good news. We're looking for a scan that shows the tumor isn't any bigger and that shows there are no new cancerous spots. As a bonus, we'd love to see an even smaller tumor! Even the slightest reduction is big news.

Based on his blood work and the scans, we'll learn when he can start chemotherapy again -- and what the dose will be. He's finished six cycles of chemo. He needs to get through at least six more cycles.

As always, we rely a great deal on your prayers and faith and belief in miracles.

Guest blogger: See Spot Run racers

See Spot Run racers,

Hi there! How's your training going? It is eight weeks until the big day, SUNDAY, DEC. 14! If you have not yet, please register for the race. IT WILL SELL OUT! Race officials say this year's race is already outselling last year's.

Below is a list of people who have contacted me about the race. If your name should be on here, or if you have any changes, please e-mail me.

Running the full marathon:
Mark T.

Running the half:
Tyra D.
Allison E.
Jim D.
Paul D.
John W.
Sharon G.
Sally S.
Greg W.
Will P.

Relay team (in no particular order, to be registered together):
Holly B.
Brandie W.
Andy L.
Randy L.
Melanie D.

Jim and Betty Damm have graciously offered to host a pre-run pasta dinner for the runners and their families. It will be on Saturday, Dec. 13, in the afternoon. Please let me know if you and your family will be able to attend.

For all of you who want to contribute to the team but aren't runners, there are many opportunities. We need people to shuttle the relay team back and forth, make signs and cheer on the team at various points along the course. Please contact me if any of those sounds like something you can contribute. The runners will need our support!

I am still lining up the shirts but I haven't heard from everyone yet. If you want a shirt, please e-mail me with how many and the sizes.

So in short:
1. Register for the race! Prices go up Oct. 31.
2. Are you on the running list? Please let me know if you should be but you're not.
3. Can you be a member of the support crew?
4. Please RSVP to the pasta dinner.
5.If you want shirts, let me know how many and which sizes.

I know Steve has been touched by everyone's support. Let's keep that spot on the run!

-- Liz
runforsteve@gmail.com

Helping hands

Steve and I are constantly impressed by the creative ways you all have helped us since December. In today's Briefing column I shared a short list of ways to help friends in need -- all drawn from the generosity of our awesome support system. I couldn't include everything in 600 words, of course -- that would take a book.

You can read the column by clicking here.

Thanks for helping us fight the Damm Spot!

Back to work

Dr. M gave Steve clearance yesteday to emerge from seclusion. He felt well enough this morning to return to the office. He's moving around much better, with just a slight wobble. He'll still probably need to lay low most of the weekend.

His next blood count check will be Wednesday, the same day as his next MRI and visit with Dr. M.

We wish you all a happy weekend!

Counts up, energy down

Great news! Steve's white blood cells and neutrophils quickly rebounded since Monday's test and the subsequent neupogen injections.

Today's results: WBC is 10.2 with an expected range of 4.0-10.5, up from 1.7 on Monday.

Absolute neutrophils are 8.8 with an expected range of 1.8-7.8, up from 0.8 on Monday.

With those results, Dr. M's office instructed him to stop taking the antibiotic and the neupogen shots.

Despite the excellent lab results, Steve has had a rough day. He's even more lethargic and worn out than earlier this week. He's taken advantage of the quiet house today and spent many hours sleeping. It is a perfect day for napping -- cool, gray and rainy.

We're both anxious for next Wednesday's MRI, though we agree there's no reason to worry. He has no new symptoms -- just samplings of old favorites. Still, we'll both feel better when we get another good report next week.

Alert status

After two cycles of increased chemotherapy, Steve's body is saying, "Slow down!"

His labs today show alert levels on white blood count and absolute neutrophils. The numbers were confirmation of the exhaustion he's been feeling the past few days.

The WBC is 1.7, with expected range of 4.0-10.5. Neutrophils are 0.8, with expected range of 1.8-7.8. These low numbers indicate that his immune system is compromised. His body isn't able to protect itself against germs right now.

Longtime readers will remember that this happened July 4 weekend this year. The protocol is the same -- preventive course of antibiotics, neupogen injections (which stimulates neutrophil growth) and seclusion from too many people until his counts are higher.

Because he was so tired today, he didn't work in the office. I drove him to the office so he could have blood drawn. (How lucky that he can have this chore taken care of by friendly co-workers?!) Then he rested at home while the kids, Betty and I spent the day at the State Fair. (I'm sure some of you were there, too -- it was the most crowded day I've ever seen in all my fair-going life.)

Tisa, our neighbor and friend who is also a highly skilled home-health care nurse, came by the house tonight to administer the neupogen -- two injections in his stomach.

He'll spend tomorrow at home and return to work Wednesday morning for another blood draw. Based on the Wednesday results, we'll know if he can stop the neupogen shots and be around people again.

When we meet with his oncologist next week, I expect we'll discuss dropping the chemotherapy dose back to 200 mg.

In the meantime, we'll pray for a quick return to normal counts, protection from infection and renewed strength.

Lowly

Steve started strong this weekend, attending Cooper's soccer game. (Go, Dolphins!) He was understandably tired when we returned home and rested while the kids and I went to a pumpkin patch birthday party. (Happy 3rd, Reese!) He started feeling queasy Saturday night and has been eating just a few bland foods and resting when he can ever since. He did help his brother celebrate his birthday this afternoon. (Happy 42nd, Uncle Jim!)

Steve will have his weekly blood draw Monday, and we'll get a good picture of his counts then. As always, we're praying for counts in range.

Sometimes when one of us is feeling low, we say something silly like, "I'm feeling like a worm with a hat and one shoe." We're alluding to Lowly Worm, a favorite Richard Scarry character. Here's hoping tomorrow is brighter and less lowly!

Steve & Katie

From this afternoon

Isn't Steve looking great?!

Margie

Our dear friend Jamie was here visiting a few weeks ago and commented that Margie, our dog, needed more blog time. She's right!

The story of Margie is yet another example of how everything works out and how there's often a plan that we don't quite realize until we can step back and view it with perspective.

In January 2007, our sweet Scottie dog Emma died. Steve and I were Emma's humans for almost as long as we had been married. She was a wee puppy with large satellite ears when she joined us in our tiny Lubbock duplex in September 1994. We rescued another Scottie, Mac, to be her companion two years later. They moved with us to the Dallas area in 1997 and tolerated the addition of Cooper to our family in 2001.

Sweet Mac died when Cooper was a toddler. The Damm house was a sad house for quite a while. Emma recovered and carried on without him. She was super laid back by the time Katie was born.

When Emma passed away, the four of us were heart broken. We missed rubbing her pink belly and scratching her between the ears. We missed her sounds, her fuzziness, her presence.

After a few weeks with no dog in the house, we began to consider another. Cooper, who was 5 and in kindergarten, was particularly distraught without Emma. We didn't want to "replace" her right away, as that didn't seem to honor what she meant to us. But it was clear that all of us wanted to find another furry baby.

I found a Scottie rescue group in Mesquite and began corresponding with the director. He was prickly. He didn't seem all that interested in placing a dog in a home with two young children. I persisted and he eventually relented, allowing us to visit his house to meet some available Scotties.

On our scheduled Saturday in late February 2007, Steve woke up feeling strange. He was worn out, recovering from a high fever earlier in the week. When he tried to drink coffee that morning, he couldn't. It dribbled out of the side of his mouth. By noon, the right side of his face was droopy. By mid-afternoon, when we were driving to Mesquite in a Lubbock-style sandstorm, the right side of his face was paralyzed.

Still, we visited with some dogs, including a spry Scottie named Katie Margaret. She was by far our favorite, and the four of us left knowing that we wanted to take her home -- if the rescue group approved our application.

Katie Margaret, in need of a home

But first we had to get to the emergency room to find out what was wrong with Steve's face. The diagnosis was Bell's palsy. He couldn't close his right eye completely or drink well or speak normally for about a month. And then most of the issues resolved, although I could always detect a tiny droopiness that never seemed to recover.

By the time the palsy seemed to be gone, the Scottie rescue group approved us -- after multiple e-mails, phone calls and a house visit. These folks are thorough! We adopted Katie Margaret and promptly started calling her Margie. (We couldn't have Katie the girl and Katie the dog.)

Margie and Katie, 2007

Margie can be wild. She thinks an open door is an invitation to run free. Those first few months, we chased her all over the neighborhood. She still plots to escape through the front door -- we're just sneakier about how we open and close the door. She runs laps around the house. She barks incessantly at the wild rabbits that live in our bushes and hang out on our front porch.

Cooper, Margie and Steve, this afternoon

She's gentle with Cooper and Katie and loves walks and playing in the back yard. She's also extra protective of Steve. After his biopsy in January, Margie would lie next to him and lick his head, as if trying to heal the wounds. She seeks him out no matter where he is in the house -- upstairs on the exercise bike, resting on the green chair in the family room, napping in the bedroom. She says goodnight by wrapping her body around his and licking him as much as he'll allow.

Her timing is just one example of the intricate relationships and connections that piece our story together. I've written before that I suspect Steve's tumor may have started back in February 2007, caused by a virus that first manifested with a high fever and Bell's palsy. I'm fascinated that his palsy symptoms began the same day we met Margie, who has become such a comfort to our family -- especially to Steve.

Yay! Another week of chemo

Steve's labs are back from today, and though some counts out of range, nothing is critical. He gets another week of chemotherapy at 240 mg. Woo hoo!

Flu shots

The whole Damm family received flu shots this week. Like everyone else, we're hoping the vaccine matches the actual strains this year!

We received so many helpful hints on making the process easier for the kids. We avoided the nasal spray because it contains a weakened live virus, and we didn't want to take any chances with Steve's immune system.

The key for us was hiding our destination until we got there. Cooper and Katie had just three minutes to fret. Katie went first, cried for seconds and recovered with a lollipop. We had more trouble getting Cooper on the exam table, but he didn't hide under the bench as in previous visits. He wanted to see the needle and the serum and then relented. (He's the opposite of me. I have no interest in seeing needles in advace.) Our nurse was super quick, and he says he didn't even feel the shot.

Steve, as always, has more needles in his future. He'll have blood drawn at work tomorrow. We're looking forward to good counts so that he can start another week of Damm Spot-killing chemotherapy.

He recovered from his sore throat earlier this week but remained tired. Still, he didn't miss a day of work and, with the stabilizing help of a little extra steroid, watched Cooper's soccer team win its game Saturday. He did stay home today to rest and recharge for the week.

Feeling lowly

Yesterday Steve started feeling ill with cold or allergy symptoms. He has an awful sore throat and is very tired. He started taking an antibiotic yesterday, just to be safe, and took a long nap this afternoon.

Ragweed, fungus and grass are at high levels in the Dallas area. The kids and I are having allergy symptoms also, but we're not struggling as much as Steve.

For some reason -- related to medication we're thinking -- Steve's body is really cold all the time. We kept the A/C at 80 almost all summer, and he was still freezing. While friends and I were in Whitefish, Mt., this weekend, Liz and I found a great fleece pullover for Steve to wear around the house. It's fuzzy and soft on the inside and includes cozy pockets. He's worn it around the house ever since I came home Monday afternoon.

Ami flew back to Austin yesterday, after spending a week taking care of everyone. She cooked pots of soup to stock the freezer, spruced up the front porch and beds with fall flowers, cleaned out the pantry, treated Katie to her first manicure, drove all over North Texas and much more.

My favorite destination of the weekend was Glacier National Park. Here is one reason why:

Avalanche Gorge, Glacier National Park

Guest blogger Liz: See Spot Run

I just want to remind everyone that race day is fast approaching. I hope your training is going well!

It's not too late to join our team, "See Spot Run." I will also be putting together five-person relay teams, so if you are interested in being part of one and running anywhere from 4 to 6 miles, please let me know by Oct. 8. I hope to see a lot of you at the race!

Many signed up to run the full and half marathons, but even if running isn't your thing you can come out and cheer on the team. Join us in celebrating our dear friend Steve Damm and all that he and his family have gone through this year.

E-mail me at runforsteve@gmail.com.

-- Liz

Good lab results

Steve's lab results today looked good. Some counts are out of range, but nothing is at an alert level. This is excellent news after his increased dose of chemotherapy last week. Now his body has a week of rest from chemo, and he'll do it all again next week.

Changing prism

Steve outside the Aston Clinic, wearing protective glasses post-dilation

Yesterday was our monthly visit with Dr. M, Steve's opthamologist. It was the shortest visit so far -- we were in and out in 90 minutes.

Steve's vision has changed a bit, so the opthamology staff switched out the prism that snaps behind his glasses' right lens. The new prism has improved his ability to see out of his right eye. The image is slightly hazy but not near as blurry as it was before. He still has double vision if he doesn't look straight ahead, but prisms aren't going to fix that. We need the sixth cranial nerve to repair!

We asked about getting the prism ground into his lenses, which would reduce some distortion. That won't happen for a while, as they expect his vision will fluctuate often. We'll most likely return to the office every month to check his vision and switch out for a new prism if necessary.

Want to read some great news? Steve doesn't have a scheduled medical appointment until Oct. 22! That is the longest stretch without a doctor's visit since our adventure began last December. He will need to have blood drawn weekly to check counts, but he's able to get that done at his office.

The goal is keep him healthy. We don't want any surprise doctor appointments or emergency room visits.

Aunt Ami arrived from Austin today -- in time for me to get out of town. I'm joining Liz, Kris and Holly for a short getaway to Montana and Banff. I have mixed feelings leaving. Steve and I haven't been separated for any length of time for more than a year, and I never like leaving Cooper and Katie. I won't deny, though, that I'm looking forward to a small break. The trip is made easier knowing that Steve and the children will be cared for so well by Ami, Jim & Betty and other friends who are pitching in. Thank you!

240 mg

Please join me in saying a quick prayer tonight that the new chemo dose of 240 mg will do its important work while also keeping Steve's blood counts in a healthy range.

Increasing chemotherapy

Back in early July, when Steve's immunity system crashed, he took a break from his chemotherapy regimen. When he started again, it was at a lower dose -- 200 mg, down from 300 mg. The risk of staying at the high dose was too great.

Today Dr. M decided to start the next cycle of chemo, which begins Monday, at 240 mg. Steve's labs have been consistently in range or close enough; no levels have been at an alert status. Dr. M thinks his body should be able to handle the increased dose. We pray she's right. We want to hit the tumor with as much poison as possible without compromising his daily health.

We also learned:

• At least one doctor thinks Steve's double vision could go away. A neurology resident examined Steve before Dr. M and thinks the affected cranial nerve may take care of itself when the tumor moves out of the way. This is the only doctor who has even suggested his vision could come back -- we hope the minority rules!
• The whole family needs flu shots. If any readers know a good way to make shots easier for 3- and 7-year-olds, please let us know.
• Dr. M encourages Steve to increase his steroid dose if he starts feeling especially rundown or weak. He's been at 2 mg for weeks and has some stability issues that are magnified when he's tired.
• His mouth and throat are free of thrush!
• The next MRI is Oct. 22.

Visiting Dr. M always lifts our spirits. She showers Steve with praise, telling him what a great patient he is, how thrilled she is that he's working and not just sitting around the house, how she loves our optimism.

In the past few months we've realized how small and connected our world is. Today we received yet another reminder.

Dr. M's new medical assistant and I were chatting while Steve was in the lab. I learned that she was the medical assistant for Cooper's first pediatrician, Dr. P, while we were patients there. While the nurse worked for Dr. P, one of their 3-year-old patients was diagnosed with a glioblastoma (the same kind of tumor Steve has).

The nurse kept in touch with the parents. During one of their phone calls, she learned that they were desperately looking for a qualified nanny to help care for their sick daughter. The nurse talked it over with Dr. P, who agreed to let her quit that day. She started working for the family and took care of the little girl until she died later that year.

Some may think of the nurse's presence in Steve's life as a coincidence, but I take it as a small sign that he's being taken care of in a very special way.

Silver linings

I've been writing a family column for a new Dallas Morning News product for a few weeks. Today I share with readers Steve's condition and some of the silver linings that we've discovered. I don't want it to become a cancer column, but I also can't ignore a major part of our lives.

You can read the column here.

(Thanks to Will for his excellent editing!)

Little bits

Steve's condition

It feels strange if I don't update every few days, but there's really nothing new to report on Steve's health. He is noticeably weaker on his left side, but he can walk well enough on steady, predictable surfaces.

He's been on 2 mg of Decadron for a while. We see Dr. M on Friday, so she can advise if she's comfortable with the steroid dose. I certainly wouldn't vote for stepping down any more right now, but I am the overprotective wife.

Tonight he finishes another cycle of chemotherapy.

Ike

We received steady rain at our house yesterday, leftovers from Hurrican Ike. Uncle Jim (and his two cats) left his home in Galveston County on Thursday night, drove north and arrived in Dallas on Friday morning. He learned from a friend today that his house is mostly unscathed -- some roof damage and a collapsed fence.

Run for Steve

Steve loved reading everyone's suggestions for the running team name. (Are you training? There's still time!) After great deliberation, he selected See Spot Run. Thanks, John Wise!

If you plan on particpating in the Dallas White Rock Marathon on Steve's behalf and haven't let coordinator Liz Smith know, please do so soon. She's working with other volunteers on a logo design and shirt orders, so she'll need to know who's out there! You can e-mail her at runforsteve@gmail.com.

Friend and neighbor Allison and I are training to run the half on Dec. 14. Yesterday we ran the Heroes for Children 5K together. We'll keep adding a mile or so every week until we reach 13.1.

Liz, Katie, Tyra, Cooper and Allison, before the 5K

Unremarkable is good

Steve and I met with his pulmonologist this morning to review results from multiple tests. They all came back unremarkable -- they found nothing physiologically wrong with his lungs or heart. Wonderful news!

The sleep study indicated that he needs more sleep. He fell asleep before they even turned out the lights, which apparently is unusual. And he dreamed 28 percent of the time. Normal is 20-25 percent.

Dr. L recommends that Steve get at least seven and a half hours of sleep each night. He sleeps closer to six and a half hours now. He can't sleep any later than he does now, so he'll need to go to bed earlier and turn off the TV or close his book quicker.

Dr. L also wants Steve to continue his exercise routine. Yesterday he started walking on a treadmill. (Jim and Betty loaned us theirs. Uncle Jim and friendly neighbor Ron carried it into the house.) Compared with the exercise bike, there is more risk with the treadmill -- Steve's not exactly steady on his feet. He's also tried a water aerobics class for people with physical limitations at our city's athletic center.

The doctor couldn't give us an answer on Steve's low pulse oxygen level but also doesn't seem concerned about it being in the mid-90s, instead of at 100 percent.

Life at home has been messy and loud. Yesterday Katie closed the drain on her bathroom sink, turned on the water and left the room for about 20 minutes. When I discovered the incident, the bathroom, hallway, linen closet and part of her room were flooded. I used every towel in the house (plus a few borrowed from the Smith collection) to soak up the water. Liz helped me dissemble and move all the contents of Katie's bookshelves into the dining room so we could access the wet carpet. Layne rented and delivered a carpet-drying fan, which has been loudly blowing and drying for the past 24 hours.

Life is never dull!

Little update

Steve's sleep study didn't include a lot of sleep. We were thankful for the extra day off yesterday, which allowed him more time to catch up on rest.

He was at the hospital before 10 p.m. Saturday but wasn't checked in until midnight. Then the tech had to hook him up to all kinds of gadgets (with goo that doesn't wash out well). He woke up around 5 a.m., pressed the nurse's call button and was let out after 6. We hope they gathered enough data that he doesn't need to return. We'll know more after next week's pulmonology appointment.

In other news, Steve's thrush in the back of his throat is back. He says this case is more severe than normal. He's resumed the four-times-a-day rinse that tastes awful but eventually clears the infection.

His spirits are still strong. His voice is not. It's noticeably weaker today. And he's more wobbly now than he was a week ago. He talked yesterday about dropping his steroid dose to 1.5 mg, but now he's not sure. The love-hate relationship continues with Decadron. It helps him walk, use his left arm and hand and talk. It also encourages a slimy infection in his throat, causes cataracts, thins his skin and weakens his muscles.

We constantly rely on perspective. His current symptoms aren't any fun, but it's September, almost nine months after his cancer diagnosis, and he's working full time, enjoying life with family and friends, going on outings. I am indescribably proud of how he's handled every challenge and feel so blessed that you all still check on him, pray for us and take good care of us.

Katie, Steve and Cooper on Saturday at the Nasher Sculpture Center, one of Steve's happy places

Sweet dreams

Steve is about to leave for his sleep study. He'll spend the night being observed in a lab at a nearby hospital. His pulmonologist is looking for why his blood oxygen level remains low. One possibility is sleep apnea, which can be diagnosed after a sleep study.

Good friend and neighbor Andy is driving him, and Jim and Betty will pick him up at 6 a.m., saving me from waking the kids up, piling them in the minivan and driving them in the dark.

We'll get the results from the study at the next pulmonology appointment, scheduled for Sept. 9.

If all goes well this week, we won't have a single medical appointment between Sept. 1 and Sept. 9 -- the longest stretch since all this began!

By the way, if you also read The Damm Spot, our "happy" family blog, you will notice a change. I've made the site password protected. If you would like access to that site, please e-mail me, and I'll add you to the permissions list.

Getting stronger

Steve has been riding a stationary bike a few days each week to start regaining cardiovascular and muscular strength. He showed off his improved strength and endurance twice in the past few days.

On Friday night the four of us walked to and from Cooper's school for meet-the-teacher night. The total distance is about two-thirds of mile.

This morning we all walked Coop to school again for the first day of second grade.

Steve was just a little bit wobbly, but he kept a steady pace and did really well. It's the most physical activity he's had in a long while. Go, Steve, go!

Stable

Today's MRI is identical to the one taken in June. That means there is no regrowth and no new visible tumor activity. Isn't that awesome?! We will continue to pray that the mass will shrink to provide more relief of his neurological symptoms.

We spent much more time than expected at the cancer center to get the good news. The MRI was at noon. We were scheduled to see Dr. M at 2:30 p.m. but didn't actually see her until 4:30. Thankfully we both had books to read and enjoy each other's company! (Cooper and Katie spent the afternoon with Grandma.)

In addition to the MRI news, we learned:
1. Steve can start Cycle 5 of chemotherapy next Monday. He'll remain at 200 mg of Temodar (down from 300 mg) and will continue taking Accutane.

2. He can try to drink liquids without thickener. He still has no gag reflex, but Dr. M and her staff agree that if he's careful and sits up straight while drinking, he should be able to avoid aspiration. If he starts coughing while drinking, he'll return to the thickener and straw. Tonight he drank regular ol' ice water out of a glass for the first time since January. "It was highly exciting," Steve reports.

3. Dr. M wants him to try to go back to 2 mg of steroid daily. He's been at 3 mg for a couple of weeks after a failed attempt at 1.5 and then 2.

4. He's going to add a multivitamin daily with the hopes of increasing calcium (for weakening bones) and Vitamins C and E (to stave off cataract growth).

Thank you for continuing to check on Steve, for praying for him and sending us good thoughts!

Good scan

No changes. Yay! More to come later!

MRI on Wednesday

Steve's MRI is Wednesday at UT-SW. After the imaging, he'll have blood drawn, then we'll meet with Dr. M to get results.

No matter how much I try to avoid worry, I can't help but be nervous before these scans. I just remind myself that we don't have any reason to believe there is any growth or new tumor activity. Steve is doing well -- his energy level is good, he's relatively stable when walking (even with his distorted prism vision), his headaches have disappeared again. And he's not nervous at all about tomorrow's appointment.

Guest blogger Liz: Run for Steve update

Hi, everybody -- just checking in ahead of the race for Steve. There are only four months remaining for those of us planning to run. With the weather hopefully cooling off, it's time to talk about training.

The first thing to decide is which race you will run. There is a full marathon (26.2 miles), a half marathon (13.1), and a relay, which would be 26.2 miles divided among five runners. We are building at least one relay team, so if you're interested in joining please e-mail runforsteve@gmail.com.

If you're running the full or half marathon be sure to register as quickly as possible because this event WILL sell out.

Now for a little housekeeping:

1. We are still trying to come up with a name for our team. Please e-mail your ideas. Steve will be choosing his favorite. Once a name has been determined, we will order team shirts.

2. In order to place the order for team shirts, we need to have an idea about how many shirts need to be ordered. If you are planning to run, please send an e-mail with your name and size. We will let you know how much each shirt will cost.

While you're training, be sure to stretch, drink plenty of water and increase your mileage gradually. If you would like to read more about training you can visit:

www.runtherock.com

www.runnersworld.com

www.jeffgalloway.com

Be strong, be safe,

Liz

Just for fun

Cory Robertson (left) and Steve Damm

ATO AZD Winter 1989 party

University of Michigan

Eyes

Steve, Katie and I spent three and a half hours in the opthamology clinic at UT-Southwestern this afternoon. (Cooper hopped on a jet plane with Grandma and Papa this morning for a week in New England.) Here is what we know.

Cause of double vision
We've actually known this, but it's good to review. Steve's double vision is caused by a problem with his sixth cranial nerve. This nerve starts in the brain stem, where the Damm Spot lives. The nerve has been damaged by the Damm Spot and/or related swelling. The sixth cranial nerve's only job is to control the eye's ability to move back and forth. It's not working well on Steve's right eye. So, his left eye can move side to side in a normal fashion. But his right doesn't track the same. So he sees two of everything. He doesn't wear a patch over the right eye. He just tries to focus on the image he sees through the left eye and tries to ignore the right.

How to fix double vision

You can try to help the "bad" eye with prisms. You can also have surgery. Surgery is not an option right now. There is too much other work going on in his brain, most importantly chemotherapy every other week until sometime next year.

Seeing single

For the next two weeks, Steve is wearing a prism that was cut to fit his current spectacles. It's a special piece of plastic that snaps into place behind the lens for his right eye. From far away, the prism makes that side of his glasses look foggy. When you are close up, you can more clearly see prism patterns cut into the plastic.

With the help of the prism, for the first time since January, Steve is able to see one image straight in front of him. The image is distorted, though, and images to the far right are double. Still, he was so excited on the drive home to see just one of everything right in front of us.

Next step

Dr. Mc, the opthamologist, doesn't think prisms are an ideal solution for Steve. On our follow-up visit in two weeks, he expects Steve to tell him how awful they are.

Surgery is the better option, he says. Even when it's possible one day in Steve's case, it won't be a perfect solution. Right now, according to Dr. Mc's office, there is nothing that can completely restore Steve's sight to single vision as it was before January.

But wait! There's more: Cataracts

We can add yet another reason why we're anxious for Steve to get off Decadron. Long-term use of the steroid can cause cataracts, and Steve has the beginning stages of cataracts -- a cloudy film -- on both eyes.

Sweet girl

We weren't prepared for how long today's appointment would last. Had we known we would be there for three and a half hours, we would have found someone to take care of Katie for the afternoon. She rarely accompanies us on doctor appointments -- playing with friends is much more fun for everyone involved. Still, she was very well behaved, cuddling, singing quietly and eating lots of snacks provided by the clinic.

Daddy-daughter challenge

Katie had a rough night last night. She took hours to fall asleep and woke up multiple times. She was fussy this morning and glassy-eyed. She woke from her afternoon nap with a 100.7 fever.

Our awesome pediatric office was able to see us at 4:40 p.m. on a Friday. By 4:55, we had a diagnosis -- a cold. Like anyone with a cold, she's highly contagious right now, which means we have to keep her away from Steve as much as possible and be careful of what she touches and then he touches. We don't know how susceptible he is right now to germs, but there's no reason to test it. Katie's doctor says one of the current virus strains is often turning into croup and laryngitis.

When I put Katie to bed tonight, she cried, "But I want to give Daddy a hug and a kiss." Blowing him a kiss across the family room wasn't sufficient.

Steve and Katie, November 2007, Log Cabin Village