Saturday, March 28, 2009
Karen is a 1986 graduate of W.T. White High School. (Steve graduated in '87, his brother Jim in '84.) She was diagnosed in December with lymphoma and needs a bone marrow transplant.
She doesn't yet have the perfect matching donor, so she and her family are trying to find one.
Visit NorthPark Center in Dallas between noon and 5 p.m. Sunday for a quick swab of the inside of your mouth. Your DNA will be tested to see if your bone marrow can help save Karen.
Read The Dallas Morning News story by clicking here or the Neighbors story by clicking here.
Friday, March 27, 2009
Registration is now open for our next race, the Dallas Running Club 11th Annual White Rock 'n' Roll 5 Mile on May 2.
Please click here if you would like to register. Let's have another great turnout!
Also, you can still place an order for T-shirts. Please e-mail me with your size by April 6, and the shirts will be ready in time for the race.
Even if you're not running this time, you might want your own Run for Steve: See Spot Run shirt!
I hope to see you all out there supporting Steve.
Please e-mail me if you have any questions.
Thursday, March 26, 2009
I don't report every tiny Steve symptom. I don't write about every time one of us cries. I don't detail every conversation about how the Damm Spot affects Steve and our family.
I also don't include all the turmoil that Cooper and Katie face. I want to protect their privacy. I don't want to violate our trust.
Still, it is fair to say that Cooper struggles more with expressing himself than Katie does. It's a combination of age, gender, personality and more.
We're doing our best to give him the space and resources he needs to cope with all the changes in our lives.
For all those reasons and more, I was especially proud of our 7-year-old son today. (I'm always proud, of course, but today was extra special.)
I sat with Cooper and his sweet friend at lunch today, just before taking Steve to treatment. Here was part of our conversation.
Friend: Cooper, why haven't I been to your house in a long time?
Cooper: (Shrugs, looks at me)
Me: Well, Cooper's Daddy still isn't feeling well, and we've had to limit how often we have visitors.
Friend: He's been sick for a long time. For more than a year!
Cooper: Yes, he has brain cancer.
Friend: Does he have holes in his brain like my great-grandma did? She lost a lot of her memory.
Cooper: Oh no, he remembers lots of stuff.
Cooper was calm and matter of fact. And he was obviously proud of his Daddy.
The treatment was uneventful -- always a good thing! I worked a little, and Steve napped a little. We visited with one of Dr. M's nurses, who is leaving next week for another job with another hospital. She has been responsive, pleasant and helpful, and we're disappointed that she's leaving. But she's moving on to a bone marrow transplant floor and will no doubt be a blessing to those very ill patients.
As we were leaving the cancer center, Steve said he craved a banana split. We pass a Braum's on the way to the Tollway, and I was happy to stop to fulfill his request. It was a lot of food, which he somehow managed to gracefully eat -- even with a bum arm -- on the long drive north.
Steve started the day tired and seems even more so now. We both expect that the next few days will be difficult. He's had just one dose of Carboplatin before today, but that one was long lasting and memorable, causing fatigue and nausea for about a week.
Still, we're thankful for the chemotherapy and for another shot to damage the Damm Spot.
As always, we're most thankful for another day.
Wednesday, March 25, 2009
Quite a few folks who wanted to give were unable, and they still received 10 units for Steve's account! Another four were donated in Steve's name at a nearby Carter BloodCare center.
We continue to give thanks for these generous donations that not only honor Steve but also help save someone else's life.
We're also touched that the drive was held at Schreiber, where Steve and I were married almost 15 years ago.
(The staff has to remain, though. If they need to use the restroom, they have to leave campus and head a few blocks west to use facilities at St. Paul.)
If order is restored by tomorrow, Steve will report for chemo at 1:30 p.m. Thursday.
Tuesday, March 24, 2009
Monday, March 23, 2009
He didn't break any skin and isn't sore today.
He seems to fall when he's especially fatigued. We've talked about how he needs to plan his motions and think through each step. I am doing my best not to worry about potential falls, but I'm also on high alert status, especially in the middle of the night.
Tuesday morning we'll go to UT-SW for blood draws then return home to wait for results.
If his blood counts are high enough -- and we're particularly watching platelet counts -- then we'll go back Wednesday afternoon for the next cycle of Carboplatin and Avastin. If the counts are too low, we'll take a week off.
In other health news, Cooper has been struggling for the past week with severe allergy symptoms. On top of congestion and itchy eyes, yesterday he broke out in hives that subsided with Benadryl but returned about 11 p.m. I gave him another dose then, knowing that would make the first day back to school after spring break difficult.
He woke up in barely enough time to get ready, but he was in no condition to actually go to school. He was groggy, itchy on his face and neck and all around miserable.
We saw his pediatrician this morning, who prescribed eye drops and another allergy medication and said Cooper also has a cold.
Every day we continue to rely on the strength and kindness of others. Today was no exception.
Meghan took care of Katie for two hours this afternoon. Zena brought a lavish homemade dinner. Sharon arrived just in time to help get Cooper and Katie ready for bed and to clean the kitchen after dinner.
We're continually surprised with sweet e-mails, notes and acts of kindness that truly lift our spirits and remind us of life's abundant blessings.
Saturday, March 21, 2009
The noise woke me up right away, and I found him on the tile floor. There was blood coming from his left leg -- a small cut across his shin, the part that is all skin and bones.
I applied pressure with a cloth for a while and then wrapped the cloth with a stretchy bandage (later I cleaned the wound and used two Hello Kitty Band-Aids, chosen by Cooper). Then we worked together to plan and execute his rise from the floor.
We eventually were settled and asleep by 5:45 or so. Then Cooper and Katie were in our room by 6:15, but that's another story. (Short version is that Katie took Benadryl for the first time last night, and it makes her loopy, not sleepy.)
Steve thinks that a sharp pain in his left foot caused him to fall. There is one spot that is particularly raw, and when he steps on a hard surface, the pain is shocking.
He'll need to wear slippers or shoes all the time, until those spots heal.
He spent all day at home, to rest for dinner tonight to celebrate Jim's 70th birthday! Steve, Cooper, Katie and I, and Jim, Betty and Uncle Jim enjoyed a lovely dinner at Jasper's in Plano. We came back to our house for gifts and sunshine cake. Then we put the kids to bed -- Katie sans Benadryl.
Friday, March 20, 2009
Today's MRI shows the tumor looks exactly the same today as it did in mid-February. Dr. M says you could just about superimpose one on top of the other and not discern a difference.
This is excellent news, as it shows that Carboplatin and Avastin are at least holding new growth at bay. We are so thankful for medicine and prayers!
Platelet count and chemo
In other news, labs today showed that Steve's platelet count is dropping -- down to 90,000 this week, compared with 130,000 last week.
Dr. M wants his counts to be at least 100,000 to administer the next cycle of Carboplatin -- the very drug that is causing the platelets to drop.
So, we'll return to the cancer center Tuesday morning for more lab work. The hope is that the platelets have hit their low spot and will start to climb.
If the counts are high enough Tuesday, Steve will receive the next dose of Carboplatin and Avastin on Wednesday. If they're not, we'll delay treatment for another week.
Another count is climbing that shouldn't be. Steve's MCV (mean corpuscular volume) has been steadily increasing and is now a bit too high. I don't exactly understand the MCV -- it has something to do with red blood cell volume.
As a remedy, Steve will start taking a B6/B12 supplement.
Steve's feet have started shedding skin, apparently a chemotherapy side effect. Because his skin is already thin from Decadron and chemo, there are spots where the skin has rubbed too deep. When he puts pressure on those spots, he gets shooting pain in his feet.
He'll need to start soaking his feet at least once a day, and we'll pay close attention to the sores, which are "portals for infection," according to Dr. M.
Thrush has returned to Steve's mouth and throat. Today he'll begin taking two drugs to combat that recurring infection.
Steve is worn out from the day. He opted to use Walker, Texas Ranger today instead of relying on a wheelchair to get around. So, he walked from the valet desk to the elevator to the MRI center to the lab to the exam room and then back to valet. That's a lot of walking for our sweet Stevie D.
He's back at the home office now (our comfy family room sofa), catching up on work.
We both are relieved with the MRI and hopeful that his platelets start climbing up today so we can battle the Damm Spot on Wednesday.
Thursday, March 19, 2009
I have a strong sense that the imaging will show that the Damm Spot is either the exact same size as in February or just a tiny itty bitty bit smaller.
Steve's symptoms aren't much better than they were the week we found out the tumor started growing again, but there also isn't much decline. He's about the same.
Please join us in praying that the MRI procedure itself is smooth (the last one was a fiasco because of an incompetent and cruel technologist) and that the resulting image shows a smaller Spot.
Wednesday, March 18, 2009
This may be my favorite of the pillow photos. It looks as if McQueen is expecting an important phone call.
Jim and Betty are bringing Cooper and Katie home now. We can't wait to see them!
(We also came home to a lovely floral arrangement from the Pashas. Thank you!)
Tuesday, March 17, 2009
Steve finished The Shack last night and has moved on to The Mysterious Benedict Society and the Perilous Journey.
Monday, March 16, 2009
Steve, under an umbrella, on the beach, sipping a cappuccino shake
Sunday, March 15, 2009
I had asked earlier this week for seats near the front of coach, to make the walk down the aisle easier for Steve. When we checked in, our seats were in row 31. I asked again for seats closer to the front, explaining that Steve would be unable to navigate the aisle without assistance.
Maureen at the gate took care of us, upgrading us to first class -- an unexpected treat. We were in the second row of the plane. Steve was able to hold on to doors and seats until he reached our row.
We left Dallas at 8:20 a.m., and five hours later we were resting on lounge chairs on the beach.
The Breakers is a 15-minute cab ride from the Palm Beach airport. Steve's rented wheelchair was waiting at the valet station when arrived, and our room was ready within minutes. We settled in to the room and then headed for the coast.
A boardwalk allowed me to push Steve to the sand, and then an attendant pushed him from the boardwalk to the sand and a waiting chair.
The wind was too strong today for umbrellas, but we did read (Steve is reading The Shack, and I'm reading American Wife) and enjoy frozen drinks. Steve sighed appreciatively more times than I could count.
This is going to be a fabulous trip.
Saturday, March 14, 2009
Walker, Texas Ranger.
Or Texas Ranger for short. Perhaps TR if we're in a hurry.
Check back soon for photos of Steve, Texas Ranger and me at the beach! We'll be there soon.
Thanks for voting and for checking on Steve!
Thursday, March 12, 2009
He was exhausted when he came home. So tired that he took a nap while four children, ages 3 through 7, ran around the house shrieking and laughing. (My best friend since eighth grade, Melissa, and her two daughters drove up from San Antonio to visit Dallas-area friends during spring break.)
Then he woke up, ate dinner and worked some more. He'll need to rest all day Saturday to be prepare for our adventure that begins Sunday!
He wants to sit under an umbrella, with his toes in the sand or water, reading a book and drinking a smoothie.
On Sunday, his dream will come true.
He and I are flying to Palm Beach for a little getaway. Jim and Betty will take care of Cooper and Katie.
Julie helped us find what seems to be the perfect resort. We need a direct flight to a domestic location (Dr. M has forbidden Steve from traveling to Mexico or the Caribbean) with excellent health care facilities. We need a beachfront hotel that has an easy path to the beach -- no flights of stairs.
We'll spend three nights at The Breakers, which undoubtedly will be the nicest, fanciest hotel we've ever visited.
With lots of advice and help, I think we have a good plan to get Steve from the house to the airport to the hotel. The hotel is renting a wheelchair for his use, plus he'll have his walker (yet to be named -- have you voted?).
We plan to relax for three days. We won't leave the hotel grounds. We'll enjoy the reassuring peace of the ocean and each other's company.
(I also wrote about the trip for today's Briefing column. Click here to read it.)
Wednesday, March 11, 2009
Tyra and Steve last week, photo by Katie
Tuesday, March 10, 2009
He considered each of the names and developed a list of his 10 favorites.
Now you can vote for your favorite. The poll is on the upper right side of the blog.
Check back this weekend for the official name!
Monday, March 9, 2009
More than 80 people arrived at our amenity center to try to give blood during the six-hour drive. Fifty-eight units were collected!
Steve and I continue to be overwhelmed with the generosity and sweet spirit of his support network. We are touched that so many friends and even strangers took time from their weekend activities to stand in line, fill out forms and get stuck by needles.
Steve's Carter BloodCare account should be inching toward 100 units! And just think of the many lives you all are improving and possibly saving with your donation.
I gave blood for the first time since 1991 yesterday. As I get older, I become more fearful of needles. When I have blood drawn for physicals or thyroid checks, I look away from the needle, take lots of deep breaths and imagine that I'm lying on a beach.
Yesterday I did all of those things, but I also imagined the pain that Steve has endured for more than a year, without complaining, without self pity. My 30 minutes of discomfort is a tiny blip compared to everything he has faced and conquered.
Shannon, Carrie and Liz -- three great friends who donated blood Sunday
The next scheduled blood drive in Steve's honor is at Jim and Betty's church, Schreiber Memorial UMC, 4525 Rickover Drive, Dallas. You can stop by anytime between 9 a.m. and 2 p.m. on Sunday, March 22.
Saturday, March 7, 2009
Steve and his walker, Monday at school
Wednesday, March 4, 2009
Dr. M's nurse and I talked about continuing to search for the cause -- maybe an underlying cardiac problem? In the meantime, Steve was instructed to elevate his left foot as much as possible.
On Monday I also called a massage therapist we've used before, to schedule an appointment for Steve. I thought she'd be able to help him relax and maybe help address some of the swelling.
She arrived yesterday afternoon and spent more than 90 minutes with him, gently applying pressure and moving his limbs. When he stood up and used his walker to leave the room, his leg was moving a little better and his knee wasn't locking as badly.
When Steve woke up this morning, I peeked at his feet and was amazed to see that his left foot is much closer to normal. There is still some swelling, but it is not nearly as disfigured and puffy. Plus, he has a little bit more mobility in his left hand.
I called the therapist right away to thank her for the work and schedule another appointment for next Tuesday. Steve and I are so happy to have found an alternative therapy that makes his life a little easier.
Tuesday, March 3, 2009
Monday, March 2, 2009
Lab work showed blood counts that are "good enough" and don't require any intervention.
The ultrasound of both legs showed no evidence of deep vein thrombosis.
Ami was scheduled to fly home tonight but is staying at least one more day. (We decided that early this afternoon, when we weren't sure of what the day would bring.)
Thanks for the flurry of prayers! (And for the mocha latte, Betty!)
We have chosen our next race, so get ready to lace up your shoes. We will run the White Rock 'n' Roll 5-mile run on Saturday, May 2.
We have also received a few requests for more See Spot Run T-shirts. We will be placing a new order April 6.
The shirts will be the same color and design as the first batch -- yellow with blue letters, a Steve Damm favorite.
You can order a cotton T-shirt for $6 or a "technical" shirt by Augusta for $19. These are awesome prices, made possible by T's Awards & More. (The store has kindly waived the design and production costs for Steve's team!)
The cotton short-sleeved T-shirt is available in youth sizes small to extra large and adult sizes small to double extra large. All sizes are unisex sizes.
The short-sleeved technical shirts are available in adult unisex, small to extra large.
If you are interested in buying a shirt, please contact me at firstname.lastname@example.org.
I can't wait to see all of the yellow shirts at the run!
Sunday, March 1, 2009
Aunt Ami flew in from Austin late Thursday and has been helping us ever since. Uncle Rich and Tara joined her Friday afternoon, driving in after work and school. (College student Sasha is in Savannah.) The full house has been great fun.
Ami prepared a gourmet meal last night -- roasted beef tenderloin with double mushroom ragout, horseradish mashed potatoes and lemon-thyme spinach. She's also been sprucing up our container garden off the kitchen, taking care of Katie and running errands.
Cooper has been Rich's shadow, helping him cut back plants in the front beds and discussing strategy for computer war games.
Rich and Tara return to Austin this afternoon, and Ami will be here until late Monday.
Tara, Rich, Steve, Cooper, Tyra and Katie
Ami and Tara joined Katie, me, Jim and Betty yesterday to watch Cooper and his Destination Imagination team perform at the regional tournament.
The seven second-graders -- Caleb, Dylan, Cooper, Asher, Matthew, Mia and Brighton -- have been working on their challenge since September. They created a funny, detail-rich skit about a computer bug who confuses Web sites.
We all loved watching them perform and were thrilled when their hard work and team spirit was recognized with the Renaissance Award for outstanding design, engineering, execution and performance!
The team will perform again Monday in front of the entire school during the morning assembly. Our goal is for Steve to be well enough and strong enough to attend.
Cooper, Ami, Tara & Katie at DI
Steve started to feel Carboplatin-induced nausea on Friday, after the IV anti-nausea meds wore off (they were given before chemotherapy on Wednesday). He's been taking oral Zofran as needed to help him feel better.
His new home-health occupational therapist visited Friday morning, followed five minutes later by the new physical therapist. Steve worked hard for two hours.
The OT focuses mostly on upper body motion. He assists Steve with achieving and maintaining independence on daily routines -- shaving, showering, dressing, eating. All of these activities have become increasingly difficult with the stubbornly slow left side of his body.
The PT focuses on whole body movements, such as using the walker and getting in and out of the bed and chairs. The main goal is safety. We have to prevent a fall.
His sleep patterns are unpredictable. Some nights he can't fall asleep until 2 a.m. and sleeps late. Or maybe he falls asleep by midnight but wakes at 4 and is up for two hours. He definitely feels better when he's had more sleep, so he fits in naps when he can.
Steve continues to work from home. His mind is still sharp, and he's proud that he's able to continue the work he loves.
Understandably, his spirits have been affected by the past few weeks. There has been so much deterioration in such a short amount of time, and he's had to make big physical and emotional adjustments.
Still, he knows he is loved and never fails to express love for everyone around him. And we continue to hope and pray for relief from the growing tumor. We visualize those Damm Spot cells being beaten back by Carboplatin and Avastin. Out Damm Spot!