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

Super daddy and uncle

Here is Steve, reading to Katie, Cooper, Brooke and Molli, all squished in a twin bed, after he worked all day, went with us to the pool and helped them all get ready for bed -- and just a couple of hours before he takes another dose of chemotherapy.

"Pray it gets a little smaller"

Steve's appointment with his radiation oncologist, Dr. A, went about as we expected. Dr. A reviewed the most recent MRI (from June), checked Steve's vitals and responses and chatted for a while.

Like everyone else, he's eager for Steve to get off Decadron but also recognizes that he has to have it right now. (Steve is still on 3 mg and isn't sure he's ready to drop down to 2 mg tomorrow. He says his left side is about 80 percent back.) Dr. A told us that another risk with long-term steroid use is weakened bones. So now I'm evaluating Steve's daily calcium intake to see if he's good or needs more. My goal is find a food or foods that fill the calcium need as well as other nutritional needs. Steve doesn't have a huge appetite these days, so we need foods that serve multiple purposes. His daily morning smoothies are great opportunities for sneaking in added nutrition.

Regarding the tumor, Dr. A says that we need to "pray it gets a little smaller," which would lessen Steve's neurological symptoms and allow him to stop taking Decadron. Little reductions to the Damm Spot can have a big impact.

Dr. A also checked Steve's gag reflex. He still doesn't have one. So he'll continue to thicken all liquids and drink through a straw.

His blood oxygen level is stubborn and was 94 percent yesterday. Steve has one more test related to investigating the cause -- a sleep study scheduled at the end of this month. We've not heard results from last week's echocardiogram, which we take as good news. We'll receive a final report after the sleep study.

The home front is busy. Our nieces are spending the week with us for some good cousin fun. Cooper and Brooke are attending Fine Arts Week at our church in the mornings. Katie and Molli spend the mornings in the water, building Lego towers and running around with me. Betty helped me with a sudden beetle infestation of our burr oak tree. (Diagnosis: harmless.) Rae has been driving for us often. Uncle Greg watched all four kids while we were at appointments yesterday. There's not much relaxing this summer, but we're enjoying our time with family and friends.