If you live in the Dallas area, consider setting aside time Sunday to try to save Karen Mellow Stock's life.
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.
Saturday, March 28, 2009
Friday, March 27, 2009
Guest blogger Liz: Run for Steve
Friends,
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.
Thanks!
Liz Smith
runforsteve@gmail.com
Thursday, March 26, 2009
Lunch today
This blog is a mostly accurate glimpse into our lives with cancer. I say mostly because there are things I omit.
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.
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.
Home from chemo
Today's appointment was in the afternoon, so we got home later than normal. (The Bassens picked up both Katie and Cooper from their respective schools and took care of them until we returned to Frisco.)
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.
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
Even more blood donations
Schreiber Memorial United Methodist Church (Jim and Betty's church in North Dallas) hosted a successful blood drive in Steve's honor last Sunday.
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.
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.
Delay
Steve's nurse just called to tell us that his chemotherapy infusion has been delayed by a day. There is no water at the cancer center today.
(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.
(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
Good counts
Labs from today show that Steve's platelets climbed up to 146,000, definitely high enough to receive chemotherapy on Wednesday. Other counts are in range enough, too. Yay!
We'll continue fighting the Damm Spot tomorrow!
We'll continue fighting the Damm Spot tomorrow!
Monday, March 23, 2009
Another fall
While Steve was getting ready for bed last night, he had another tumble. He was using his walker when he fell backward into a dresser and wall.
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.
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
After the fall
Steve fell in the bathroom about 5 a.m. today. He is OK, but he was understandably rattled.
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.
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
Excellent news: Stable scan
First, the excellent news
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.
Elevated MCV
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.
Feet
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
Thrush has returned to Steve's mouth and throat. Today he'll begin taking two drugs to combat that recurring infection.
Overall
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.
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.
Elevated MCV
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.
Feet
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
Thrush has returned to Steve's mouth and throat. Today he'll begin taking two drugs to combat that recurring infection.
Overall
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
MRI on Friday
Steve's next MRI is tomorrow!
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.
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
Lightning McQueen
During Steve's very first cancer-related hospitalization, Julie brought him a gift: a square Lightning McQueen pillow from Target. (Hospital pillows are especially awful -- plastic, thin and without any support.)
It's smooth and silky on one side and plush on the other. It's squishy. It's been Steve's ideal companion on multiple hospital visits, cancer center visits, car trips, airplane rides and more.
Of course, the pillow accompanied us to Palm Beach and back.
Steve thought it would be fun to take photos of the pillow around The Breakers, and so I did. (Steve's whimsical ideas often remind me of my dear, late Gramma. She really would have loved this.)
This may be my favorite of the pillow photos. It looks as if McQueen is expecting an important phone call.
We're home!
We weathered some rain in Palm Beach this morning and had an unventful flight home. Sharon picked us up at the airport -- with flowers even! -- and got us home in record time.
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!)
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
At the beach, Day 3
Walkway from hotel to the pools and beach
Tropical lemonade
Steve finished The Shack last night and has moved on to The Mysterious Benedict Society and the Perilous Journey.
Today was an excellent day to scavenge shells.
The water was cooler today than yesterday, and the shore wasn't very crowded.
Have I mentioned that I love the beach?
Wind and clouds couldn't scare us away.
Joseph was instrumental in Steve's dream come true. He helped us get Steve and his wheelchair on the sand each day and helped Steve get back to the boardwalk.
Phlox (?)
Gerber daisy
Orchid
Tyra & Steve after dinner Monday, March 16, 2009
At the beach, Day 2
Gift basket from Frisco friends
Steve, under an umbrella, on the beach, sipping a cappuccino shake
Tyra and a mango shake
View from one of the pools 
Pastry tray during afternoon tea in the Tapestry Bar
Glass sculptures in L'Escalier
Resting under a gazebo, with a view of the Atlantic
Catching a few last rays of sunshine by the pool
View from a lawn
On the walkway between the hotel and sea wall
Steve and Tyra in front of the sea wall
One of the hotel's beautiful gardens
Near the organic herb garden
Tree on the golf course (a banyan tree?)
Hibiscus bushes line a number of walkways
Chandelier just inside the main entry
Palm trees at the entrance 
Entrance to The Breakers
Dinner at the hotel's Italian restaurantSunday, March 15, 2009
At the beach, Day 1
Sharon arrived at our house before 6 this morning to take us to the airport. She was a great help getting us all the way to the ticket counter, and then American Airlines and D/FW personnel made the rest of the morning relatively easy.
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.
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
The winner is ...
The polls have closed, and Steve's walker has a name.
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!
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
Home from work
Steve successfully returned to the office today. He started the morning at the Carrollton clinic, then went to lunch for his boss' birthday, then worked out of the Plano clinic.
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 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!
Beach bound
For weeks Steve has been daydreaming about the beach.
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.)
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.)
Big step
Steve is getting ready this morning to work in the office -- for the first time since mid-February.
He'll require lots of strength, balance and stamina. Your prayers for a good day would help, too!
He'll require lots of strength, balance and stamina. Your prayers for a good day would help, too!
Wednesday, March 11, 2009
Update and a lesson
Steve received an infusion of Avastin this morning at the cancer center. The new chemotherapy, Carboplatin, is administered just once a month, but he still gets Avastin every other week.
His blood counts were good enough. They're almost all out of range, but they're at an acceptable low for treatment and not low enough to warrant injections or transfusions.
Steve's symptoms continue to be the same or get a tiny bit better.
He looks steadier with his walker, and when he has to take a few steps without the walker, I get only slightly nervous instead of panicked.
His left hand is a little bit more responsive. He's still unable to type with the hand or convince it to do much, but it's reacting a little quicker today compared with a month ago.
His voice comes and goes. It tends to be stronger in the morning and weakens throughout the day. Today, though, it started slurred and is just about gone. Katie's sleeping, and Cooper is still at school, so we're having quiet time right now -- both of us working on our laptops.
******
Last week I had a little meltdown on the phone.
Every few weeks I talk with a registered nurse and case manager representing our health insurance company. On our last lengthy conversation, I said something about home health visits that alarmed her.
She called back last Thursday morning to discuss our home health options.
Our policy allows 40 home health visits each calendar year. That's 40 visits total, no matter the need.
Steve's PICC line requires weekly dressing changes, so when he was discharged from the hospital in December, the social worker arranged for home health (just in time for Steve to come for Christmas).
We've used that nurse almost every week since. She comes once a week to take vital signs, ask about symptoms and change the dressing.
In addition, Steve recently started receiving physical therapy and occupational therapy at home. The two therapists were integral in making life at home easier and safer for Steve. His mobility and fine motor issues required some professional advice and care.
With all those visits, we've already used about half of the allowed visits for 2009. And it's not even mid-March.
The nurse transferred me to a customer service representative to verify the number 40 and to give me an opportunity to ask about exceptions.
Our policy allows no exceptions.
And that's when I started to cry on the phone.
I was upset with the whole situation -- that we'd already used so many visits, that I hadn't researched the number allowed, that there was no room for exception, that Steve has lost so much mobility that he even needs home health at all.
I had numbers running through my head -- $250 per nurse visit, unknown totals for therapy (I haven't seen those statements yet).
I pulled myself together and worked on solutions.
We'll now have nurses at the cancer center change the PICC line dressing at weekly infusion appointments or during lab draws.
We asked the PT and OT to discharge Steve as soon as they felt comfortable doing so. They both have been complimentary of Steve's hard work and were able to release him this week.
If Steve needs further PT or OT, we'll take him to a clinic unless the work must be done at home.
There are truly countless details to track with a serious illness. I have tried so hard to keep on top of all of them, but I've learned that that's not entirely possible. After last week's meltdown, I've studied more closely specific details of our insurance benefits. A tough lesson -- but at least it happened before we ran out of visits altogether.
Tyra and Steve last week, photo by Katie
Tuesday, March 10, 2009
Vote
Our blog friends and Facebook friends flooded Steve with creative suggestions for walker names.
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!
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
Applause! Applause!
Neighbors Phil, Denna (organizer extraordinaire) and Tisa -- integral members of our awesome support network Yesterday's neighborhood blood drive in honor of Steve was a huge success! Thank you to everyone who donated, tried to donate and helped organize the fabulous event.
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.
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
No crises for days PLUS a call for names!
When friends have asked this week how we're doing, I answer: "Good! We haven't had a crisis since Monday!"
We are so thankful for "normal" days that don't require anxious phone calls to the doctor or yet another 30-mile drive to the cancer center.
Compared to a month ago, Steve is still struggling. But he feels better today than he did a week ago. He's a little more stable, a little stronger, not as tired. Hooray for small steps in the right direction!
We're encouraged by this for a couple of reasons. The Avastin/Carboplain combo may be fighting back new tumor growth, as shown by slightly improved symptoms. At a minimum we think it's preventing new growth, as he hasn't had a decline in symptoms since the treatment last week. And, of course, we're thankful for any relief for our "Super Stevie" (nickname courtesy of Aunt Ami).
Even though it's been a crisis-free few days, Steve has still been active.
The home-health physical therapist and occupational therapist worked with him two days each, for a total of four hours of exercises.
He worked from home all week, from the sofa or comfy green chair or even from bed.
He's getting great use from the shiny red walker. He used it Monday to get from the van to the school cafeteria, where he watched Cooper and his DI friends perform their award-winning skit for the whole school. He relies on it at home to get from room to room and even carry his drink, book, knitting, phone, etc. (Did you know that Betty taught Steve how to knit? He's working on a prayer shawl as a gift, wanting to give back for the many he's received since last year.)
The only thing the walker lacks is a name. If you've got a good suggestion, please leave it in the comments.
Steve and his walker, Monday at school
Wednesday, March 4, 2009
Reduced swelling
After we learned Monday afternoon that Steve doesn't have blood clots in his leg, we were so relieved -- another crisis averted.
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.
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
Blood donors
As of today, Carter BloodCare shows that 21 people have donated blood in Steve's name.
Thank you!
And don't forget that you can donate this Sunday at the Lone Star Ranch blood drive. Click here for more information!
Thank you!
And don't forget that you can donate this Sunday at the Lone Star Ranch blood drive. Click here for more information!
Monday, March 2, 2009
No clots
We are home from an afternoon of tests.
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.
Whew.
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!)
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.
Whew.
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!)
Swelling
Steve's left foot is extremely swollen. Dr. M wants an ultrasound of both legs.
I'll update later today.
I'll update later today.
Guest blogger Liz: See Spot Run
It's that time again -- time to help Steve get that Damm Spot on the run!
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 runforsteve@gmail.com.
I can't wait to see all of the yellow shirts at the run!
-- Liz
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 runforsteve@gmail.com.
I can't wait to see all of the yellow shirts at the run!
-- Liz
Sunday, March 1, 2009
Weekend update
Jones family
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.
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
Destination Imagination
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
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!
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