Cooper bounced back today. He stayed home from school, watched the Inauguration with me, fiddled with his new microscope, reluctantly practiced spelling words, ate ice cream, put together a puzzle and more.
Steve has a minor sore throat but no fever. He seems unscathed by strep so far.
-----------------
I corresponded today with two local folks affected by brain tumors.
One is the father of a young girl who has tumors in her brain stem and spine.
The other is a woman about my age, who learned last week that her brain tumor is back, two years after surgery and radiation therapy.
In Washington today, Sen. Edward Kennedy suffered a seizure related to his brain tumor.
There are thousands of these stories every year.
It's easy to get discouraged by all the illness and cancer that surrounds us.
It's just as easy -- and more important, I think -- to be inspired by the courage of those living with cancer every day.
Tuesday, January 20, 2009
Monday, January 19, 2009
Strep
Cooper got ill very quickly today. He took a two-hour nap in the middle of the day, which hasn't happened in years. He woke up with a fever and headache.
Our pediatrician's office is super responsive. I spoke with an RN at 4:40 and got an appointment for 5:10.
The waiting room was filled with a crowd of miserable-looking children, including Cooper. I've never seen him so lethargic and sad.
The flu test came back negative, but the strep test came back positive.
He's been asleep ever since we came home, except for his first dose of antibiotic. He'll have to miss school tomorrow -- the first day he's missed of second grade -- but should be feeling better and non-contagious by late afternoon.
Now we pray that Steve doesn't get sick with strep! We talked with Dr. M tonight, and she's not ready to start a preventive antibiotic for Steve. She wants us to call back if Steve shows the slightest symptom of strep.
Our pediatrician's office is super responsive. I spoke with an RN at 4:40 and got an appointment for 5:10.
The waiting room was filled with a crowd of miserable-looking children, including Cooper. I've never seen him so lethargic and sad.
The flu test came back negative, but the strep test came back positive.
He's been asleep ever since we came home, except for his first dose of antibiotic. He'll have to miss school tomorrow -- the first day he's missed of second grade -- but should be feeling better and non-contagious by late afternoon.
Now we pray that Steve doesn't get sick with strep! We talked with Dr. M tonight, and she's not ready to start a preventive antibiotic for Steve. She wants us to call back if Steve shows the slightest symptom of strep.
Sunday, January 18, 2009
Ups and downs
After a relatively strong day Friday, Steve had a rough start Saturday.
He woke up feeling weak and tired. He was in our closet, reaching for a shirt off a hanger, when he lost his tenuous balance and fell to the floor. He wasn't hurt but was shaken by the incident.
He stayed in bed most of the morning and early afternoon. Then we went to visit friends Ben and Aliisa, their three children, and Will, Holly and Conor.
Steve was able to sit for most of the afternoon and evening, and we all enjoyed catching up and reminiscing while our six children jumped, ran, played, drew, ate and more.
Steve, Will and Ben were in high school and band together; Aliisa and Ben dated during college; Will and Ben were roommates in college; Will introduced me and Steve at their apartment; Holly met Will about the same time; Ben was in law school at Texas Tech when Steve was getting his MBA at Tech; Will, Holly and I all worked at the Morning News together.
With all that history and continued common interests, there's never enough time to fit in everything we want to talk about. But we tried.
Steve feels a little stronger and more stable today.
A year ago yesterday, Steve endured a five-hour biopsy that revealed the Grade IV tumor. When I get discouraged and worried about his body's slow healing and these ups and downs, I stop and remember that we are truly blessed. A year ago yesterday, we weren't sure that we'd be this lucky, that we would be describing degrees of his strength and fatigue, that we would be having dinner with old friends, that we would be enjoying together our beautiful children.
We are incredibly thankful for the gift of the past year.
He woke up feeling weak and tired. He was in our closet, reaching for a shirt off a hanger, when he lost his tenuous balance and fell to the floor. He wasn't hurt but was shaken by the incident.
He stayed in bed most of the morning and early afternoon. Then we went to visit friends Ben and Aliisa, their three children, and Will, Holly and Conor.
Steve was able to sit for most of the afternoon and evening, and we all enjoyed catching up and reminiscing while our six children jumped, ran, played, drew, ate and more.
Steve, Will and Ben were in high school and band together; Aliisa and Ben dated during college; Will and Ben were roommates in college; Will introduced me and Steve at their apartment; Holly met Will about the same time; Ben was in law school at Texas Tech when Steve was getting his MBA at Tech; Will, Holly and I all worked at the Morning News together.
With all that history and continued common interests, there's never enough time to fit in everything we want to talk about. But we tried.
Steve feels a little stronger and more stable today.
A year ago yesterday, Steve endured a five-hour biopsy that revealed the Grade IV tumor. When I get discouraged and worried about his body's slow healing and these ups and downs, I stop and remember that we are truly blessed. A year ago yesterday, we weren't sure that we'd be this lucky, that we would be describing degrees of his strength and fatigue, that we would be having dinner with old friends, that we would be enjoying together our beautiful children.
We are incredibly thankful for the gift of the past year.
Cooper and Katie, before church this morning
Friday, January 16, 2009
Progress
Steve's left arm is doing better today than it has in more than a week. He has more movement and a faster response time. It's not 100 percent yet, but he is able to lift his arm above his head, something he couldn't do last night at dinner.
He expects he'll be able to type better and faster at work today.
His left foot is still dropping and his knee is still locking, but we're hopeful that those symptoms will start to improve soon, too.
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Yesterday I attended a parenting class at a friend's church. The class was taught by Judy Wimberley, mom of one of my junior high and high school friends, Jenna. I hadn't seen Judy since I was a teenager. (In fact, our 20-year high school reunion will be sometime this year!)
She suggested creative, simple ways to teach young children convictions -- songs, puppets, felt boards, journals. I learned so much from her in less than two hours.
She told us that when her husband James was traveling, he'd write notes for the four kids on a dry-erase board.
I love that idea, so yesterday I bought and installed (with help from Steve and Greg, as I'm not all that handy with power tools) a board in our back hallway.
Steve doodled our family for the kids to enjoy before he left for work today.
Wednesday, January 14, 2009
Home
Steve and I are home after his infusion of CPT-11 and Avastin at the cancer center. He did well and actually relaxed during most of the treatment.
He napped for a while, read a little of The Mysterious Benedict Society (Cooper and I just finished reading it, and we're looking forward to discussing all the details with Steve), and watched part of an episode of The Wire (we're almost done with the fifth and final season).
Dr. M's nurse practitioner stopped by the room for a quick exam today. She was pleased to hear no wheezing or crackling in his lungs.
We wanted to make sure the team is aware of Steve's left-side issues. She advised that we watch his symptoms. If they get worse over the next few days, we'll let Dr. M know and perhaps get another MRI. What we expect will happen, though, is that his symptoms will improve after today's cancer-fighting cocktail.
A social worker also visited with us today to discuss some home health physical and occupational therapy possibilities. The hope is that someone will be at the house soon to evaluate his needs and possibilities for therapy. We may not be approved for home health, as he's not really home bound. Instead, he may be eligible for PT and OT in a health care office setting. We hope that his inability to drive will sway the report, but if not, we'll just add more appointments to the schedule.
----------------------
Cooper last night missed his Cub Scout pack meeting to go instead to math and science night at school. Den leader Wade was kind enough to stop by the house and deliver Cooper's two achievement beads awarded that night.
Wade also delivered a beautiful letter from the pack's leaders. The pack has given Cooper a Scout scholarship for 2009-2010, to encourage his continued participation in the program and lessen the financial burden.
We are reminded daily of our blessings and the important relationships that keep us going. Thank you so very much.
He napped for a while, read a little of The Mysterious Benedict Society (Cooper and I just finished reading it, and we're looking forward to discussing all the details with Steve), and watched part of an episode of The Wire (we're almost done with the fifth and final season).
Dr. M's nurse practitioner stopped by the room for a quick exam today. She was pleased to hear no wheezing or crackling in his lungs.
We wanted to make sure the team is aware of Steve's left-side issues. She advised that we watch his symptoms. If they get worse over the next few days, we'll let Dr. M know and perhaps get another MRI. What we expect will happen, though, is that his symptoms will improve after today's cancer-fighting cocktail.
A social worker also visited with us today to discuss some home health physical and occupational therapy possibilities. The hope is that someone will be at the house soon to evaluate his needs and possibilities for therapy. We may not be approved for home health, as he's not really home bound. Instead, he may be eligible for PT and OT in a health care office setting. We hope that his inability to drive will sway the report, but if not, we'll just add more appointments to the schedule.
----------------------
Cooper last night missed his Cub Scout pack meeting to go instead to math and science night at school. Den leader Wade was kind enough to stop by the house and deliver Cooper's two achievement beads awarded that night.
Wade also delivered a beautiful letter from the pack's leaders. The pack has given Cooper a Scout scholarship for 2009-2010, to encourage his continued participation in the program and lessen the financial burden.
"Your enduring hope, faith and commitment to family have thankfully reminded us of life's blessings.
We love having Cooper in our pack -- his smile is infectious ..."
We are reminded daily of our blessings and the important relationships that keep us going. Thank you so very much.
Live from the infusion room
Steve is in his comfy recliner and trying to nap. His blood has been drawn, and we're waiting for good counts so the CPT-11 and Avastin can begin.
This week, on the advice of my friend Dave Wilson, I started using Twitter. (It's a social messaging application, sort of like blogging in little spurts. Or Tweets.)
A few minutes ago, I posted via Twitter that we "are in infusion room 3, ready for another day of cancer-killing drugs."
A few minutes later, I received an e-mail that Livestrong (the Lance Armstrong Foundation) is following me on Twitter (I'm guessing that a search engine notifies someone at Livestrong when someone posts a cancer-related Tweet).
Livestrong posted in reply: "Good luck to steve today from the Lance Armstrong Foundation!"
So awesome! And just a little eery. Our world seems to get a little smaller every day, partly because of technology that still mystifies me.
This week, on the advice of my friend Dave Wilson, I started using Twitter. (It's a social messaging application, sort of like blogging in little spurts. Or Tweets.)
A few minutes ago, I posted via Twitter that we "are in infusion room 3, ready for another day of cancer-killing drugs."
A few minutes later, I received an e-mail that Livestrong (the Lance Armstrong Foundation) is following me on Twitter (I'm guessing that a search engine notifies someone at Livestrong when someone posts a cancer-related Tweet).
Livestrong posted in reply: "Good luck to steve today from the Lance Armstrong Foundation!"
So awesome! And just a little eery. Our world seems to get a little smaller every day, partly because of technology that still mystifies me.
Tuesday, January 13, 2009
Chemotherapy on Wednesday
In just a few hours, Steve will begin receiving another dose of Damm Spot-killing chemotherapy and Avastin. Woo hoo!
Steve has had a few rough days of unsteadiness and left-side weakness. He almost fell to the floor this morning while getting ready for work. He's struggling with typing and other tasks that require both hands. His left foot is dropping when it shouldn't. His left leg is dragging more than usual. His voice is fading.
He has no fever, though, and his blood oxygen level was at 98 percent this morning. We like those good vital signs!
Dr. M's office advised yesterday that he increase his steroid dose from 5 mg to 6 mg. We're anxiously waiting for the extra milligram to make big changes in his symptoms.
We pray that the CPT-11 and Avastin dose on Wednesday will help his symptoms and that he experiences no bad side effects or debilitating fatigue.
We are thankful that he's been able to work around his treatments. Steve loves his job and his co-workers. He loves solving problems and making processes better. We know we are blessed that, even with brain cancer, he's able to continue his work and keep his mind active. We know we are blessed that his employers and co-workers have been so flexible with his treatments and appointments. Thank you, PFC and Children's!
Steve has had a few rough days of unsteadiness and left-side weakness. He almost fell to the floor this morning while getting ready for work. He's struggling with typing and other tasks that require both hands. His left foot is dropping when it shouldn't. His left leg is dragging more than usual. His voice is fading.
He has no fever, though, and his blood oxygen level was at 98 percent this morning. We like those good vital signs!
Dr. M's office advised yesterday that he increase his steroid dose from 5 mg to 6 mg. We're anxiously waiting for the extra milligram to make big changes in his symptoms.
We pray that the CPT-11 and Avastin dose on Wednesday will help his symptoms and that he experiences no bad side effects or debilitating fatigue.
We are thankful that he's been able to work around his treatments. Steve loves his job and his co-workers. He loves solving problems and making processes better. We know we are blessed that, even with brain cancer, he's able to continue his work and keep his mind active. We know we are blessed that his employers and co-workers have been so flexible with his treatments and appointments. Thank you, PFC and Children's!
Saturday, January 10, 2009
See Spot Run: Return of the team
Paul, Randy, Stuart, Tyra, Cooper, Kris, Holly, Liz, Steve, Lisa, Allison and Katie
Run for Steve cheerleaders Betty and JimA big group reunited this morning to Run for Steve at the Resolution Run in Addison.
What a tough group! The temperatures were in the low to mid-30s, and the winds were strong.
Many runners from White Rock returned: John W., Lisa and Stuart C., Sharon G., Randy L., Paul D., Allison E., me. Plus we picked up some new team members: Liz S., Kris B., Holly B., the rest of the Lasley family and Cooper! All of us except John ran the 5K; he tackled the 10K.
John (in gray), soon-to-be daddy to twins with CarenJim, Betty and Steve took care of Katie (who really wanted to run the race) while the rest of us ran the cold streets of Addison. The course's biggest challenge was running up and down and up and down again the Arapaho Bridge (the big, bright blue bridge that goes over Midway).
Cooper ran with Allison and me. He did really well. He started strong, running far ahead of us, running backward, wiggling all over. He settled in to a manageable pace and then started to slow down. We encouraged him with cheers and held his hand or arm when he asked.
When we were almost finished and he saw the finish line, he started sprinted and finished strong (just under 39 minutes) and with a smile on his face. Steve and I are so proud of our sweet 7-year-old boy.
Cooper, just as he finishes his first 5KThe race celebration included a bounce house, pizza and live music. We Damms stayed until the awards ceremony to watch Sharon claim her trophy for second place in her age division. Then she kindly gave her trophy to Cooper.
Sharon and CooperWe love that so many friends are continuing to Run for Steve. It's never to late to join us! We'll choose our next race soon. We'd love for even more folks to walk or run a 5K in honor of Steve. See Spot Run!
Thursday, January 8, 2009
Excellent news: Detailed version
Smaller tumor
Today's MRI showed significant improvement over the most recent MRI of Nov. 21, the first indication via imaging that the tumor had started growing again.
(I'm still learning how to best explain the MRI images without getting bogged down in medical jargon. If one of our medically skilled friends reads this and finds an error or can explain it better, please let me know!)
When Steve gets an MRI, the machine first takes "pictures" of his brain. Then he's wheeled out of the machine, and a contrast dye is injected into his bloodstream. Then he's wheeled back in and the machine takes "pictures" of his brain with the dye.
So then there are two kinds of images to compare. One without contrast media and one with.
Dr. M was most pleased with the contrast media image, as it showed a marked improvement between Nov. 21 and today.
On Nov. 21, the tumor area was surrounded by a huge flair. It showed up bright white on the scan. It stretched across the brain stem and beyond. That image indicated that there were lots of leaky vessels. Everywhere it was white on the scan was where the vessels were leaking.
On today's image, there was still flair, but a much smaller cloud of white. And it wasn't as bright. This indicates that the brain has started repairing, that the vessels aren't as leaky.
It also indicates that the Avastin is doing what we'd hoped it would do. It has blocked the leaks and given the chemotherapy (CPT-11) a clear path to reach the tumor cells and kill them.
The scan without contrast media also indicates that the bulk of the tumor is smaller today than in November. We had assumed this was true, based on Steve's recovery from quickly deteriorating symptoms. But it sure was a relief to see the proof. In November, the brain stem looked swollen. Today it is still swollen, but not as badly.
Chemotherapy
Dr. M says that based on today's scan and her experience, we can believe that Steve's tumor will continue to respond to the Avastin/CPT-11 combination.
He is back on track for the chemotherapy infusions every two weeks. We'll return next Wednesday to start the first dose of the second cycle. After three doses, he'll have another MRI so we can see the damage.
After all this awesome news was explained and discussed, we talked a little about the sometimes disappointing experience at St. Paul the week before Christmas.
Wheezing and crackling
Then Dr. M did a quick exam of Steve. She's not sure why he's had an increase in left-side symptoms this week. She wants him to stay at his current level of steroids (5 mg daily).
She did hear some crackling and wheezing in his lungs. We headed from the second floor to the third floor for a chest X-ray.
We just received a phone call from Dr. M's nurse that the chest X-ray is clear, indicating no bronchitis or pneumonia. Whew! Steve will need to keep his rescue inhaler nearby and use it as necessary. Right now he doesn't feel any respiratory distress.
Treating MRSA
Today was the last day of Steve's IV antibiotic treatment for the MRSA diagnosed just before Christmas. He'll keep the PICC line in his arm for an indefinite period, and we'll continue to pray that it doesn't get infected as the chest port did.
As long as the PICC line remains in, I'll flush the line daily with a syringe of Heparin. And the home health nurse will come once a week to change the dressing and check for signs of infection.
The big picture
The big news from today is that we have more time.
When a glioblastoma begins growing again, after initial treatment of radiation and chemotherapy, the average life expectancy without additional therapy is three to six months. When the tumor responds favorably to Avastin and CPT-11, that window is extended. The drugs add months and sometimes years.
Among our many prayers is that science will continue to advance at a rapid speed and a third line of defense -- or even better, a cure -- will be discovered. Not just for Steve, but for the thousands of others who also fight glioblastomas, the most lethal of all the brain tumors.
We know that Steve is lucky and blessed to have survived until 2009. We continue to pray that he retains the strength and spirit to keep fighting. We continue to give thanks for our blessings. We continue to rejoice in each new day, a true gift.
We also continue to celebrate! Tonight we each ate a decadent cupcake. Cooper and Katie may not completely understand the meaning of today's MRI, but they definitely understand the significance of a Sprinkles cupcake!
Today's MRI showed significant improvement over the most recent MRI of Nov. 21, the first indication via imaging that the tumor had started growing again.
(I'm still learning how to best explain the MRI images without getting bogged down in medical jargon. If one of our medically skilled friends reads this and finds an error or can explain it better, please let me know!)
When Steve gets an MRI, the machine first takes "pictures" of his brain. Then he's wheeled out of the machine, and a contrast dye is injected into his bloodstream. Then he's wheeled back in and the machine takes "pictures" of his brain with the dye.
So then there are two kinds of images to compare. One without contrast media and one with.
Dr. M was most pleased with the contrast media image, as it showed a marked improvement between Nov. 21 and today.
On Nov. 21, the tumor area was surrounded by a huge flair. It showed up bright white on the scan. It stretched across the brain stem and beyond. That image indicated that there were lots of leaky vessels. Everywhere it was white on the scan was where the vessels were leaking.
On today's image, there was still flair, but a much smaller cloud of white. And it wasn't as bright. This indicates that the brain has started repairing, that the vessels aren't as leaky.
It also indicates that the Avastin is doing what we'd hoped it would do. It has blocked the leaks and given the chemotherapy (CPT-11) a clear path to reach the tumor cells and kill them.
The scan without contrast media also indicates that the bulk of the tumor is smaller today than in November. We had assumed this was true, based on Steve's recovery from quickly deteriorating symptoms. But it sure was a relief to see the proof. In November, the brain stem looked swollen. Today it is still swollen, but not as badly.
Chemotherapy
Dr. M says that based on today's scan and her experience, we can believe that Steve's tumor will continue to respond to the Avastin/CPT-11 combination.
He is back on track for the chemotherapy infusions every two weeks. We'll return next Wednesday to start the first dose of the second cycle. After three doses, he'll have another MRI so we can see the damage.
After all this awesome news was explained and discussed, we talked a little about the sometimes disappointing experience at St. Paul the week before Christmas.
Wheezing and crackling
Then Dr. M did a quick exam of Steve. She's not sure why he's had an increase in left-side symptoms this week. She wants him to stay at his current level of steroids (5 mg daily).
She did hear some crackling and wheezing in his lungs. We headed from the second floor to the third floor for a chest X-ray.
We just received a phone call from Dr. M's nurse that the chest X-ray is clear, indicating no bronchitis or pneumonia. Whew! Steve will need to keep his rescue inhaler nearby and use it as necessary. Right now he doesn't feel any respiratory distress.
Treating MRSA
Today was the last day of Steve's IV antibiotic treatment for the MRSA diagnosed just before Christmas. He'll keep the PICC line in his arm for an indefinite period, and we'll continue to pray that it doesn't get infected as the chest port did.
As long as the PICC line remains in, I'll flush the line daily with a syringe of Heparin. And the home health nurse will come once a week to change the dressing and check for signs of infection.
The big picture
The big news from today is that we have more time.
When a glioblastoma begins growing again, after initial treatment of radiation and chemotherapy, the average life expectancy without additional therapy is three to six months. When the tumor responds favorably to Avastin and CPT-11, that window is extended. The drugs add months and sometimes years.
Among our many prayers is that science will continue to advance at a rapid speed and a third line of defense -- or even better, a cure -- will be discovered. Not just for Steve, but for the thousands of others who also fight glioblastomas, the most lethal of all the brain tumors.
We know that Steve is lucky and blessed to have survived until 2009. We continue to pray that he retains the strength and spirit to keep fighting. We continue to give thanks for our blessings. We continue to rejoice in each new day, a true gift.
We also continue to celebrate! Tonight we each ate a decadent cupcake. Cooper and Katie may not completely understand the meaning of today's MRI, but they definitely understand the significance of a Sprinkles cupcake!
Excellent news: Quick version
The MRI shows that the Damm Spot is responding to CPT-11 and Avastin! The brain stem is much less swollen, and there is less flair (on the image (which means that the blood vessels aren't as leaky and the brain is repairing itself).
Dr. M called it excellent news.
Amen!
More to come later. (We are still at the cancer center, waiting for Steve to get a chest X-ray. Dr. M detected wheezing and crackling in his lungs.)
Dr. M called it excellent news.
Amen!
More to come later. (We are still at the cancer center, waiting for Steve to get a chest X-ray. Dr. M detected wheezing and crackling in his lungs.)
Wednesday, January 7, 2009
MRI on Thursday
Thursday morning we'll get Cooper to school, Katie to preschool and then head to UT-SW for Steve's MRI.
The appointment is at 11 a.m. After imaging, he'll go to the lab to have blood drawn. Then we'll wait to see Dr. M, who will review the results of the scan.
We're looking for shrinkage!
Steve has returned to a wobbly state the past two days. His left hand is functional, but it's not as strong as it was last week. His gait is a little off (more than usual), and his left foot drops when it shouldn't.
Our prayer is that these symptoms are signs that last week's chemo killed tumor cells, and those dead cells are expanding a little and causing the trouble.
Thank you for your prayers this week as we face another important moment in Steve's journey!
The appointment is at 11 a.m. After imaging, he'll go to the lab to have blood drawn. Then we'll wait to see Dr. M, who will review the results of the scan.
We're looking for shrinkage!
Steve has returned to a wobbly state the past two days. His left hand is functional, but it's not as strong as it was last week. His gait is a little off (more than usual), and his left foot drops when it shouldn't.
Our prayer is that these symptoms are signs that last week's chemo killed tumor cells, and those dead cells are expanding a little and causing the trouble.
Thank you for your prayers this week as we face another important moment in Steve's journey!
Tuesday, January 6, 2009
Officially off the road
Steve hasn't driven since December 2007.
At first we were just worried about what could happen. The Damm Spot hadn't yet been diagnosed as a tumor, and we didn't know what symptoms might develop daily.
Then his right eye stopped tracking horizontally with the left, and he developed double vision. Even after that was corrected with the prism in the lens of his right eye, his vision wasn't good enough for driving. And there is always a small risk of seizure.
So, with the help of many of you, Steve has been chauffeured all over North Texas and beyond for almost 13 months.
We have been paying for car insurance for him, though, as he couldn't be removed from our policy until he surrendered his driver's license. That happened today.
I think I was more emotional about giving up the license than Steve was. He's been mentally preparing for the moment for months. I've been looking forward to the cost savings, but while we were standing in line, I was saddened by the symbolism of what we were doing. (I was also amused by the conversations surrounding us. The DPS office offers excellent people-watching.)
Giving up a driver's license for an identification card isn't permanent, though. If he's healthy enough to start driving again in the next 24 months, Steve can just reapply. If we need more time, he'll need to take a written and driving test.
In the meantime, I continue to save a little money each month for a new car. Steve loves dreaming about what car he'll drive when he's able.
Steve this morning, before applying for an ID card
Saturday, January 3, 2009
Feeling better
Steve has reacted well to yesterday's dose of Avastin and CPT-11. He rested Friday afternoon and felt fairly strong in the evening. He's had no adverse side effects to the chemotherapy cocktail and hasn't experienced the same crushing fatigue as with his last dose.
He also reports that he feels a little steadier on his left side. We're certain that means the drugs are beating back the cancer cells.
He was well enough this morning be at home with Cooper and Katie while I ran with some neighborhood friends. (A group of us are running the Resolution Run 5K in Addison next week, and many of us will be wearing See Spot Run shirts. Even Cooper is running!)
We enjoyed a visit with Stephen, one of my old high school friends in town for the holidays, later in the day. And then the kids and I left while Steve stayed home to rest.
Jeannie spoiled Katie for the afternoon, taking her shopping and out to dinner, while Cooper and I built his Cub Scout pinewood derby car at a hands-on workshop led by derby expert Pat. Cooper's den leader, Wade, and his son Cory were also there. With Pat and Wade's help, Cooper and I were able to create a speedy, sharp-looking car.
We're looking forward to a normal week: the kids return to school and Steve and I get back to more routine work routines.
We're also looking forward to Steve's next MRI on Thursday. We can't wait to see how much damage has been done to the Damm Spot!
He also reports that he feels a little steadier on his left side. We're certain that means the drugs are beating back the cancer cells.
He was well enough this morning be at home with Cooper and Katie while I ran with some neighborhood friends. (A group of us are running the Resolution Run 5K in Addison next week, and many of us will be wearing See Spot Run shirts. Even Cooper is running!)
We enjoyed a visit with Stephen, one of my old high school friends in town for the holidays, later in the day. And then the kids and I left while Steve stayed home to rest.
Jeannie spoiled Katie for the afternoon, taking her shopping and out to dinner, while Cooper and I built his Cub Scout pinewood derby car at a hands-on workshop led by derby expert Pat. Cooper's den leader, Wade, and his son Cory were also there. With Pat and Wade's help, Cooper and I were able to create a speedy, sharp-looking car.
We're looking forward to a normal week: the kids return to school and Steve and I get back to more routine work routines.
We're also looking forward to Steve's next MRI on Thursday. We can't wait to see how much damage has been done to the Damm Spot!
Friday, January 2, 2009
Home
Today's chemotherapy treatment went smoothly. We're now home, and Steve is settling in for an afternoon nap. His last treatment knocked him out for a couple of days, so we're prepared for him to be out of commission for the weekend.
We hope you all are enjoying 2009 so far and looking forward to all the promises of a new year!
We hope you all are enjoying 2009 so far and looking forward to all the promises of a new year!
Live from the infusion room
Steve is settled into a recliner in infusion room 3 at the Simmons Comprehensive Cancer Center. His blood counts came back at acceptable levels, so soon he'll begin receiving his pre-chemo drugs through his PICC line. Then the he'll start Avastin, then CPT-11. He'll also receive his twice-daily antibiotic here today.
Cooper and Katie spent the night with Grandma and Papa last night and are being appropriately spoiled today.
Cooper and Katie spent the night with Grandma and Papa last night and are being appropriately spoiled today.
Monday, December 29, 2008
Back at work
Steve felt well enough this morning to go to work! He's working a few hours in the office today and hopes to repeat that Tuesday and Wednesday this week.
He hasn't had a fever in a couple of days. He's had no adverse reactions to the antibiotics. His left side is still sluggish, but he's able to walk and move his left arm. He felt well enough to attend Sunday school and church yesterday -- the first time in more than a month.
We both are comfortable with the PICC line/antibiotic process -- it's become routine. Every morning and every night, I clean the line with saline solution (salt water, as Katie calls it) and attach the bag of Vancomycin (the good buggies that are chasing away the bad buggies, as Katie says). About two hours later, I remove the bag and flush the line with more saline and then Heparin.
The home health RN was here Friday to apply a new dressing around the PICC line. She'll return to do it again Thursday.
On Friday, Steve will return to the UT-SW cancer center to receive the next dose of Avastin and CPT-11, two weeks and a day behind schedule. We're both eager to get back on track.
He hasn't had a fever in a couple of days. He's had no adverse reactions to the antibiotics. His left side is still sluggish, but he's able to walk and move his left arm. He felt well enough to attend Sunday school and church yesterday -- the first time in more than a month.
We both are comfortable with the PICC line/antibiotic process -- it's become routine. Every morning and every night, I clean the line with saline solution (salt water, as Katie calls it) and attach the bag of Vancomycin (the good buggies that are chasing away the bad buggies, as Katie says). About two hours later, I remove the bag and flush the line with more saline and then Heparin.
The home health RN was here Friday to apply a new dressing around the PICC line. She'll return to do it again Thursday.
On Friday, Steve will return to the UT-SW cancer center to receive the next dose of Avastin and CPT-11, two weeks and a day behind schedule. We're both eager to get back on track.
Sunday, December 28, 2008
Tales from the week, Part 2
Before Thanksgiving, Sarah and John helped me wrap all the gifts I had already purchased.
I never did get to the rest of the gifts, the ones I bought after Thanksgiving. Liz and Holly came to the rescue.
On Monday night, Liz came to the house and helped me sort presents. She took them all, plus some supplies, and wrapped them the next day at her house (before she even wrapped her own family's gifts). Then she handed them off to Holly, who spruced them up with beautiful ribbons and bows.
Holly delivered them all to our house on Christmas Eve, putting them under the tree before we came home.
--------------------
I never did get to the rest of the gifts, the ones I bought after Thanksgiving. Liz and Holly came to the rescue.
On Monday night, Liz came to the house and helped me sort presents. She took them all, plus some supplies, and wrapped them the next day at her house (before she even wrapped her own family's gifts). Then she handed them off to Holly, who spruced them up with beautiful ribbons and bows.
Holly delivered them all to our house on Christmas Eve, putting them under the tree before we came home.
--------------------
The only family member who was slighted was Margie. Poor dog. I usually shop for pets at the last minute, and this year I ran out of last minutes.
Stephen and Leslie had been offering to do anything, so I asked them to be Santa for Margie. They delivered more toys than could fit in her stocking! Cooper was especially excited that Santa had been so generous.
Stephen and Leslie had been offering to do anything, so I asked them to be Santa for Margie. They delivered more toys than could fit in her stocking! Cooper was especially excited that Santa had been so generous.
--------------------
How many grande Starbucks drinks are too many in one day?
Apparently I can handle at least three! One day this week, I bought one on my way into the hospital. Sharon delivered another in the early afternoon. Then Betty and Uncle Jim brought another as a sweet surprise in the late afternoon.
I drank all three and was still able to sleep that night. I don't expect to re-create the experiment any time soon.
Apparently I can handle at least three! One day this week, I bought one on my way into the hospital. Sharon delivered another in the early afternoon. Then Betty and Uncle Jim brought another as a sweet surprise in the late afternoon.
I drank all three and was still able to sleep that night. I don't expect to re-create the experiment any time soon.
--------------------
Yesterday we received a beautiful hand-written card from the Littles, friends from church and Sunday school who moved two years ago. They included an incredibly generous and most unexpected gift.
Steve and I were both weepy. Cooper wanted to know why, and we told him.
"I think I know why they sent it, Daddy," Cooper said. "It's for your health care." (This coming from our sweet boy who until the past few weeks didn't even want to acknowledge aloud that Steve has been ill.)
He ran off and returned a few minutes later with a sign that he created: God Bless Steve.
Then he stood on our bed and taped the sign above our headboard.
Saturday, December 27, 2008
Tales from the week: Part 1
On Steve's last night in the hospital, James and Kris treated us to a romantic evening -- as romantic as possible in sad little room 364.
James delivered Italian food and dessert. If you know Kris, you know that a meal wasn't enough. She loves to entertain and decorate and express her love in creative ways.
Kris also sent him with a basket of goodies: Christmas napkins, napkin rings and tablecloth to transform the standard-issue hospital food tray, flameless candle (she wanted James to sneak in a real candle, but he didn't want to get kicked out), funny movies.
---------------
On Christmas Eve, Steve sat in the dining room as I removed tubing from his first dose of at-home antibiotics. Katie sidled up next to him and gave him a hug.
"Daddy, I missed you," she said. "I'm happy you're home."
---------------
The week that Steve was in the hospital was crazy at home. The kids and I often weren't home, and when we were, we dashed in and out. We're not the neatest family under the best circumstances; in times of chaos, we are even messier.
I managed to wash and dry clothes but had little time to fold and put away laundry. Sometimes I loaded the dishwasher. I never made the kids' beds. My usual piles of paper started to topple. Throw in extra Christmas goodies and cards and end-of-semester schoolwork, and it was just a disaster.
Meghan, Julie and Allison intervened. When Meghan was here taking care of Margie, she took care of laundry and clutter.
The night before we came home, Julie and Allison spent much of the evening here, going from room to room to tidy. They are both busy moms who work full time outside their homes; they both spent precious time two days from Christmas to make sure our home looked especially cozy when we returned.
---------------
Uncle Jim spent much of his vacation taking care of his niece and nephew. He picked them up from Aunt Mel and Uncle Greg's house in Anna on Monday and brought them to Frisco. He managed to prepare dinner, clean up after a Katie accident, take care of Margie, run errands, fill my car with gas and more, all in one night.
He continued to help Tuesday and Wednesday, when the kids moved in with Jim and Betty. The three of them juggled Christmas preparations while keeping Cooper and Katie well entertained, well fed and well loved.
Thursday, December 25, 2008
Merry Christmas!
We are incredibly thankful that Steve was released from the hospital in time for Christmas Eve and Christmas Day at home with family.
We were dangerously close to spending another five days at St. Paul.
Apparently there was no way that he would be allowed to be released without the supervision of a home health agency, despite the solution the case manager and I settled on (me administering drugs on my own). We would have been there until Monday.
The case manager finally found an agency that was able to offer a nurse. My little impassioned speech apparently had moved the case manager, who in turn softened the heart of an agency's director, who in turn convinced one of her registered nurses to add an extra stop to her already-busy Christmas Eve schedule. (Either that or Dr. M raised her voice loud enough to move the case manager.)
About an hour after we arrived home Wednesday, a courier company dropped of a big bag of drugs and supplies.
A couple of hours later, our home health RN appeared. We reviewed policies, signed paperwork and then received infusion instructions.
The at-home process is much simpler than the hospital process. The antibiotic is premixed and in a fancy little bag that pushes out the drug without the use of an infusion pump. It doesn't even rely on gravity; Steve can just carry the plastic ball of Vancomycin in his pocket while it's connected to his PICC line.
My biggest challenge right now is releasing bubbles from the syringes of saline and Heparin. I hold the syringe up and push the plunger to push out the bubbles. So far, I push a little too far every time, and shoot clear liquid straight up to the ceiling. If I don't move out of the way, the liquid drips back down on my head a few minutes later.
Our friend and neighbor Tisa, who is a home health nurse manager for another company (that doesn't contract with our insurance), is my backup. She was here for the first training session, for the first time I removed the tubing, and again at 6:30 a.m. today to supervise Steve's morning infusion. We are comforted knowing we can call at any time for help if necessary.
Steve continues to express how blessed he is to be home. He's tired and running a slight fever (not high enough to report yet), but he's still happier this Christmas than any other.
Some of you may have already read a column I wrote for Briefing last week. I want to include it here today, as a reminder of everyday miracles on this very special day.
-------------------------------
Miracle's size has little to do with its impact
How do you define a miracle?
Do you need a big production – oil that lasts longer than logically possible, burning bush not consumed, thousands fed with just a handful of fish and two loaves of bread?
Or do you see little signs of a higher power and count them as miracles?
For a year, I have been praying for a big miracle: that my husband Steve be cured of brain cancer, that every last one of the tumor cells die and that there be no recurrence.
It's a bold request.
I have also been collecting miracle stories: the aunt who should have died of a brain aneurysm but still hasn't; the child whose cancer is inexplicably in remission; the mom who was given six months to live but is active a decade later.
As we wait for Steve's big miracle, I am working on being mindful of the less flashy miracles.
Our minister spoke of them this week, quoting the United Methodist belief: "The gift of miracles does not focus on the extraordinary, but sees the miraculous in the mundane and normal. Living in the spirit of the miraculous, people see God in nature, in relationships, in kind acts, and in the power of love."
Just after Thanksgiving, we learned that Steve's tumor, which had been dormant for a few months, had started growing again. That diagnosis required a quick response; within 48 hours he started a new chemotherapy regimen.
As we sat together in the infusion room and I watched clear liquids drip into a port in Steve's chest, I marveled that such a small quantity of fluid contained the power to extend his life. And as days passed and we watched for adverse reactions that never came and instead saw rapid improvement of his motor skills, I was incredibly thankful.
Surely there were miracles involved in that process – in the research that allowed the drugs to be developed, in his weak body's ability to not only endure the toxins but also triumph with increased strength and mobility.
The improvements came just in time.
We were able to attend the Neiman Marcus Adolphus Children's parade as a family, cementing a tradition started last year.
And on Sunday, Steve was able to watch friends, family members and even some strangers cross the Dallas White Rock Marathon finish line in his honor.
It was a beautiful day. He was surrounded by overlapping circles of loved ones, all wearing identical bright yellow shirts. He watched with pride as people performed athletic tasks that were once easy for him but are now impossible.
He smiled so big and so often that his face hurt.
Surely there were miracles involved in that day – in gathering that many people from across the state safely, in the training that each runner endured, in the ideal conditions and logistics that allowed Steve to navigate Victory Park and comfortably sit outside in mid-December.
Early that evening, we walked outside our front door to a crowd of about 50 friends singing Christmas carols for our family. It was the perfect end to a perfect weekend.
Later that night, Steve, who has an inoperable brain tumor and has battled courageously for 12 grueling months, declared the day "miraculous" and himself "the luckiest man on Earth."
It's not the big, bold miracle I pray for all day, every day.
It is the best miracle I've never asked for.
Tyra Damm is a Briefing columnist. E-mail her at tyradamm@gmail.com.
-------------------------------
Merry Christmas, dear friends!
We were dangerously close to spending another five days at St. Paul.
Apparently there was no way that he would be allowed to be released without the supervision of a home health agency, despite the solution the case manager and I settled on (me administering drugs on my own). We would have been there until Monday.
The case manager finally found an agency that was able to offer a nurse. My little impassioned speech apparently had moved the case manager, who in turn softened the heart of an agency's director, who in turn convinced one of her registered nurses to add an extra stop to her already-busy Christmas Eve schedule. (Either that or Dr. M raised her voice loud enough to move the case manager.)
About an hour after we arrived home Wednesday, a courier company dropped of a big bag of drugs and supplies.
A couple of hours later, our home health RN appeared. We reviewed policies, signed paperwork and then received infusion instructions.
The at-home process is much simpler than the hospital process. The antibiotic is premixed and in a fancy little bag that pushes out the drug without the use of an infusion pump. It doesn't even rely on gravity; Steve can just carry the plastic ball of Vancomycin in his pocket while it's connected to his PICC line.
My biggest challenge right now is releasing bubbles from the syringes of saline and Heparin. I hold the syringe up and push the plunger to push out the bubbles. So far, I push a little too far every time, and shoot clear liquid straight up to the ceiling. If I don't move out of the way, the liquid drips back down on my head a few minutes later.
Our friend and neighbor Tisa, who is a home health nurse manager for another company (that doesn't contract with our insurance), is my backup. She was here for the first training session, for the first time I removed the tubing, and again at 6:30 a.m. today to supervise Steve's morning infusion. We are comforted knowing we can call at any time for help if necessary.
Steve continues to express how blessed he is to be home. He's tired and running a slight fever (not high enough to report yet), but he's still happier this Christmas than any other.
Some of you may have already read a column I wrote for Briefing last week. I want to include it here today, as a reminder of everyday miracles on this very special day.
-------------------------------
Miracle's size has little to do with its impact
How do you define a miracle?
Do you need a big production – oil that lasts longer than logically possible, burning bush not consumed, thousands fed with just a handful of fish and two loaves of bread?
Or do you see little signs of a higher power and count them as miracles?
For a year, I have been praying for a big miracle: that my husband Steve be cured of brain cancer, that every last one of the tumor cells die and that there be no recurrence.
It's a bold request.
I have also been collecting miracle stories: the aunt who should have died of a brain aneurysm but still hasn't; the child whose cancer is inexplicably in remission; the mom who was given six months to live but is active a decade later.
As we wait for Steve's big miracle, I am working on being mindful of the less flashy miracles.
Our minister spoke of them this week, quoting the United Methodist belief: "The gift of miracles does not focus on the extraordinary, but sees the miraculous in the mundane and normal. Living in the spirit of the miraculous, people see God in nature, in relationships, in kind acts, and in the power of love."
Just after Thanksgiving, we learned that Steve's tumor, which had been dormant for a few months, had started growing again. That diagnosis required a quick response; within 48 hours he started a new chemotherapy regimen.
As we sat together in the infusion room and I watched clear liquids drip into a port in Steve's chest, I marveled that such a small quantity of fluid contained the power to extend his life. And as days passed and we watched for adverse reactions that never came and instead saw rapid improvement of his motor skills, I was incredibly thankful.
Surely there were miracles involved in that process – in the research that allowed the drugs to be developed, in his weak body's ability to not only endure the toxins but also triumph with increased strength and mobility.
The improvements came just in time.
We were able to attend the Neiman Marcus Adolphus Children's parade as a family, cementing a tradition started last year.
And on Sunday, Steve was able to watch friends, family members and even some strangers cross the Dallas White Rock Marathon finish line in his honor.
It was a beautiful day. He was surrounded by overlapping circles of loved ones, all wearing identical bright yellow shirts. He watched with pride as people performed athletic tasks that were once easy for him but are now impossible.
He smiled so big and so often that his face hurt.
Surely there were miracles involved in that day – in gathering that many people from across the state safely, in the training that each runner endured, in the ideal conditions and logistics that allowed Steve to navigate Victory Park and comfortably sit outside in mid-December.
Early that evening, we walked outside our front door to a crowd of about 50 friends singing Christmas carols for our family. It was the perfect end to a perfect weekend.
Later that night, Steve, who has an inoperable brain tumor and has battled courageously for 12 grueling months, declared the day "miraculous" and himself "the luckiest man on Earth."
It's not the big, bold miracle I pray for all day, every day.
It is the best miracle I've never asked for.
Tyra Damm is a Briefing columnist. E-mail her at tyradamm@gmail.com.
-------------------------------
Merry Christmas, dear friends!
Wednesday, December 24, 2008
PICC line in
Steve has returned to the room from the PICC line placement. It was successfully placed in his upper right arm. A huge step toward going home!
I administered the two last doses of IV antibiotics. It's not difficult, but there are many steps to remember -- reconstituting the drug, clamping, unclamping, releasing air, plugging, etc. Yesterday's RN assured us that I won't be able to do anything to hurt Steve, and I know there are a few of you out there I can call on for help or advice.
We had a moment of concern last night/early this morning. The drug schedule has stretched over the week. He was receiving doses every six hours, then every eight. Last night they changed it to every 12 hours -- more medicine, less frequently. That meant we needed to wake at 1 a.m. to give the drugs and 3 a.m. to remove the IV.
One of the rounding doctors this morning says we can be flexible with the times, so we're not stuck with 1 a.m. and 1 p.m. for the next two weeks. We'll choose a time that's more compatible with our need to sleep when Cooper and Katie sleep.
Today's RN seems to be on a mission to get Steve out of here before noon. We're waiting on the case manager to stop by with more information on equipment and drugs for home.
We hope you all are enjoying Christmas Eve! 
I administered the two last doses of IV antibiotics. It's not difficult, but there are many steps to remember -- reconstituting the drug, clamping, unclamping, releasing air, plugging, etc. Yesterday's RN assured us that I won't be able to do anything to hurt Steve, and I know there are a few of you out there I can call on for help or advice.
We had a moment of concern last night/early this morning. The drug schedule has stretched over the week. He was receiving doses every six hours, then every eight. Last night they changed it to every 12 hours -- more medicine, less frequently. That meant we needed to wake at 1 a.m. to give the drugs and 3 a.m. to remove the IV.
One of the rounding doctors this morning says we can be flexible with the times, so we're not stuck with 1 a.m. and 1 p.m. for the next two weeks. We'll choose a time that's more compatible with our need to sleep when Cooper and Katie sleep.
Today's RN seems to be on a mission to get Steve out of here before noon. We're waiting on the case manager to stop by with more information on equipment and drugs for home.
We hope you all are enjoying Christmas Eve!
Tuesday, December 23, 2008
Avoiding a glitch
I've had a bit of an unsettled feeling about Steve leaving on Christmas Eve. The processes are so slow here, and it's Christmas week, and there have been enough glitches already that we have faultering confidence in the system (and how all the little systems work together).
About 1:30 p.m. today a case manager stopped by the room to get the home health process started.
Started? Really? We've known since Friday that he would require help at home receiving IV antibiotics.
The case manager didn't exude confidence that everything would be in place by tomorrow. She also said she was leaving early today. Around 3ish.
My unsettled feeling heightened.
About an hour later I stopped by her desk to inquire about progress. She seemed less certain that Steve would have home health in place on Christmas Eve. It's been difficult to get staffing this week, as many home health nurses are on vacation.
My impassioned speech in reply was something like this:
"I can't think of anything more important than getting him home in time for Christmas. He was hospitalized last year on Christmas, in the middle of his cancer diagnosis. We have a 3-year-old and 7-year-old at home who desperately want to see their daddy. Steve's morale will be devastated if he has to stay in the hospital because there isn't enough staffing to administer IV drugs."
(I didn't tell her that last night, as Cooper was falling asleep, he asked me to pray aloud that Daddy be home for Christmas. And that he's been assuring Margie the dog that Daddy would be home for Christmas. And that Katie tells me every day that she's sad that Daddy is in the hospital.)
Then we started working on other solutions. Perhaps the nursing staff here could teach me how to administer the drugs. (As a bonus, there are no needles required!)
I returned to the room and then today's RN arrived. She's going to let me give him the next dose of antibiotic in the room, under her supervision. I'm going to ask to do it every time so that I'm comfortable (and Steve, too!) with the process.
I'm supposed to follow the SASH method: saline, antibiotic, saline, heparin. (Today's process will be a little different than tomorrow -- today he has a short IV line, tomorrow he'll have the PICC line.)
We're starting to feel a little better about a Christmas Eve solution. The nurse is going to start inquiring about the necessary equipment and pharmacy's role. I'll continue to be assertive until we're certain.
Steve looks good today. Yesterday he started walking around the third floor. Today he made two laps and even ventured into the gift shop. He's wobbly, but his left knee isn't locking as it has in the past. He's eating really well, thanks to many welcome deliveries of meals and treats. He's still running a huge sleep deficit, but we'll take care of that when he gets home.
He continues to show no sign of active infection. His temperature is back to his "normal" 97. His cough and wheezing are completely resolved.
As always, we're gaining strength from your prayers and ours, your faith and ours, your love and ours.
We're also enormously thankful for help in the past 24 hours, during this especially busy season:
Jim and Betty: meals, caring for Cooper and Katie, arrangements and rearrangements for Christmas celebrations
Uncle Jim: caring for Cooper and Katie, handling the ensuing chaos (fun chaos, but still) and helping around the house
Mel and Greg: caring for Cooper and Katie
Mary MT: meals and Christmas treats
Sharon: afternoon Starbucks and snacks
Andy and Julie: gift hiding, heroic package delivery and problem solving
Liz and Holly: gift wrapping
Allison: grocery shopping, card addressing
Pastor Andy: visit
Geneva: dinner and gift delivery
Meghan: caring for Margie and the house
About 1:30 p.m. today a case manager stopped by the room to get the home health process started.
Started? Really? We've known since Friday that he would require help at home receiving IV antibiotics.
The case manager didn't exude confidence that everything would be in place by tomorrow. She also said she was leaving early today. Around 3ish.
My unsettled feeling heightened.
About an hour later I stopped by her desk to inquire about progress. She seemed less certain that Steve would have home health in place on Christmas Eve. It's been difficult to get staffing this week, as many home health nurses are on vacation.
My impassioned speech in reply was something like this:
"I can't think of anything more important than getting him home in time for Christmas. He was hospitalized last year on Christmas, in the middle of his cancer diagnosis. We have a 3-year-old and 7-year-old at home who desperately want to see their daddy. Steve's morale will be devastated if he has to stay in the hospital because there isn't enough staffing to administer IV drugs."
(I didn't tell her that last night, as Cooper was falling asleep, he asked me to pray aloud that Daddy be home for Christmas. And that he's been assuring Margie the dog that Daddy would be home for Christmas. And that Katie tells me every day that she's sad that Daddy is in the hospital.)
Then we started working on other solutions. Perhaps the nursing staff here could teach me how to administer the drugs. (As a bonus, there are no needles required!)
I returned to the room and then today's RN arrived. She's going to let me give him the next dose of antibiotic in the room, under her supervision. I'm going to ask to do it every time so that I'm comfortable (and Steve, too!) with the process.
I'm supposed to follow the SASH method: saline, antibiotic, saline, heparin. (Today's process will be a little different than tomorrow -- today he has a short IV line, tomorrow he'll have the PICC line.)
We're starting to feel a little better about a Christmas Eve solution. The nurse is going to start inquiring about the necessary equipment and pharmacy's role. I'll continue to be assertive until we're certain.
Steve looks good today. Yesterday he started walking around the third floor. Today he made two laps and even ventured into the gift shop. He's wobbly, but his left knee isn't locking as it has in the past. He's eating really well, thanks to many welcome deliveries of meals and treats. He's still running a huge sleep deficit, but we'll take care of that when he gets home.
He continues to show no sign of active infection. His temperature is back to his "normal" 97. His cough and wheezing are completely resolved.
As always, we're gaining strength from your prayers and ours, your faith and ours, your love and ours.
We're also enormously thankful for help in the past 24 hours, during this especially busy season:
Jim and Betty: meals, caring for Cooper and Katie, arrangements and rearrangements for Christmas celebrations
Uncle Jim: caring for Cooper and Katie, handling the ensuing chaos (fun chaos, but still) and helping around the house
Mel and Greg: caring for Cooper and Katie
Mary MT: meals and Christmas treats
Sharon: afternoon Starbucks and snacks
Andy and Julie: gift hiding, heroic package delivery and problem solving
Liz and Holly: gift wrapping
Allison: grocery shopping, card addressing
Pastor Andy: visit
Geneva: dinner and gift delivery
Meghan: caring for Margie and the house
Monday, December 22, 2008
An extended stay
The good news:
Steve's chest port was successfully removed in his room.
The less-than-good news:
He'll be at St. Paul until Wednesday. (At least it's Christmas Eve and not Christmas Day!)
The same doctor who placed the port in his chest two weeks ago arrived in his room to remove it. I tried to stay in the room for moral support, but as soon as I saw the needles come out, I had to leave. (I am not good with needles or stitches or blood.) Betty was here, though, and held his hand during the entire procedure. He didn't feel a thing after the Lidocaine shot, which numbed the site.
Just before the removal, Dr. M called the room to visit with me.
She is reluctant to have a new line of any kind placed right now, for fear that the bacteria would just latch on and start reproducing again.
Instead, he'll receive the antibiotic through regular IVs the rest of today and all day tomorrow. (This is no easy task for Steve, whose veins were already bad pre-cancer but are just ravaged after a year of chemotherapy, steroids and other chemicals. As I'm typing, his nurse is trying her best for a good stick. It's not happening so far. The charge nurse is going to be called in next.)
By Wednesday morning, he should be OK to receive a PICC line. And then he'll be able to go home and continue receiving the bacteria-fighting drugs with the help of home health care.
Steve is handling the news well, though he would much rather be packing for home right now than settling in for two more nights.
Steve's chest port was successfully removed in his room.
The less-than-good news:
He'll be at St. Paul until Wednesday. (At least it's Christmas Eve and not Christmas Day!)
The same doctor who placed the port in his chest two weeks ago arrived in his room to remove it. I tried to stay in the room for moral support, but as soon as I saw the needles come out, I had to leave. (I am not good with needles or stitches or blood.) Betty was here, though, and held his hand during the entire procedure. He didn't feel a thing after the Lidocaine shot, which numbed the site.
Just before the removal, Dr. M called the room to visit with me.
She is reluctant to have a new line of any kind placed right now, for fear that the bacteria would just latch on and start reproducing again.
Instead, he'll receive the antibiotic through regular IVs the rest of today and all day tomorrow. (This is no easy task for Steve, whose veins were already bad pre-cancer but are just ravaged after a year of chemotherapy, steroids and other chemicals. As I'm typing, his nurse is trying her best for a good stick. It's not happening so far. The charge nurse is going to be called in next.)
By Wednesday morning, he should be OK to receive a PICC line. And then he'll be able to go home and continue receiving the bacteria-fighting drugs with the help of home health care.
Steve is handling the news well, though he would much rather be packing for home right now than settling in for two more nights.
Today's plan
After much discussion and waiting, we have a new plan for Steve.
It couldn't come any sooner, as Steve has been "NPO" since midnight -- he couldn't eat or drink anything except his necessary medication. With the new plan, he's been given permission to eat and drink.
In about an hour, a doctor will come to the room to remove the port from the right side of his chest. From what we understand, a procedure room isn't available. Everyone keeps reassuring me that the environment will be sterile.
Later today, another team will whisk him away for a PICC line insertion. PICC stands for peripherally inserted central catheter. It will be placed in his arm and provide access for IV drugs for now.
Dr. M was not comfortable with the hematology plan to insert a new port today, for fear of re-infection. We haven't actually seen her yet today but have corresponded via e-mail. She'll stop by sometime this afternoon so we can discuss the PICC line and future port placement.
There is a chance that if everything goes smoothly, he'll get to go home today. We're both thinking tomorrow is more likely but would love to be surprised!
It couldn't come any sooner, as Steve has been "NPO" since midnight -- he couldn't eat or drink anything except his necessary medication. With the new plan, he's been given permission to eat and drink.
In about an hour, a doctor will come to the room to remove the port from the right side of his chest. From what we understand, a procedure room isn't available. Everyone keeps reassuring me that the environment will be sterile.
Later today, another team will whisk him away for a PICC line insertion. PICC stands for peripherally inserted central catheter. It will be placed in his arm and provide access for IV drugs for now.
Dr. M was not comfortable with the hematology plan to insert a new port today, for fear of re-infection. We haven't actually seen her yet today but have corresponded via e-mail. She'll stop by sometime this afternoon so we can discuss the PICC line and future port placement.
There is a chance that if everything goes smoothly, he'll get to go home today. We're both thinking tomorrow is more likely but would love to be surprised!
Sunday, December 21, 2008
MRSA
It's official. Steve's current condition has been caused by methicillin-resistant Staphylococcus aureus, otherwise known as MRSA.
MRSA is possibly the meanest form of staph. Most antibiotics are powerless in its path.
The antibiotic Vancomycin, which he has been taking via IV since Thursday, is often effective in fighting MRSA. He'll continue receiving that drug.
There are some precautions in place for visitors. The hospital recommends that anyone who touches Steve wear a mask, robe and gloves. That seems to be more for the visitor's protection than the other way around. The nurse says that as long as you don't hug all over him, you should be safe. I know that he's irresistible, but we'll have to restrain ourselves for now!
The current plan is to remove the port from the right side of his chest then have a new port placed on the left side of his chest.
The staff here is working on getting him on the surgery schedule for Monday. There is a slight chance he could go home Monday; Tuesday seems more likely.
After he gets home, a home health care service will be responsible for administering the antibiotics through the newly placed port.
Steve is just wiped out. He's not sleeping well here (though right now he is taking a little nap) -- but that's almost always the case in hospitals.
The kids and I arrived home last night to find that Julie had worked her magic -- folding laundry, cleaning dishes, making beds, straightening piles. She and Meghan are in charge of Margie (the dog) while we're gone.
Uncle Jim kept Steve company this morning (and Jackie and the Earwoods dropped by) while Cooper, Katie and I were at church for the last Sunday in Advent.
Katie and fellow preschool singers were adorable during the prelude. Cooper and I had a front-row seat for the singing and wiggling.
They are now with Aunt Mel, Uncle Greg, Brooke and Molli for a cousins sleepover.
I'm staying the night at St. Paul so that I don't miss rounds in the morning or Steve's surgery.
We appreciate your continued prayers.
MRSA is possibly the meanest form of staph. Most antibiotics are powerless in its path.
The antibiotic Vancomycin, which he has been taking via IV since Thursday, is often effective in fighting MRSA. He'll continue receiving that drug.
There are some precautions in place for visitors. The hospital recommends that anyone who touches Steve wear a mask, robe and gloves. That seems to be more for the visitor's protection than the other way around. The nurse says that as long as you don't hug all over him, you should be safe. I know that he's irresistible, but we'll have to restrain ourselves for now!
The current plan is to remove the port from the right side of his chest then have a new port placed on the left side of his chest.
The staff here is working on getting him on the surgery schedule for Monday. There is a slight chance he could go home Monday; Tuesday seems more likely.
After he gets home, a home health care service will be responsible for administering the antibiotics through the newly placed port.
Steve is just wiped out. He's not sleeping well here (though right now he is taking a little nap) -- but that's almost always the case in hospitals.
The kids and I arrived home last night to find that Julie had worked her magic -- folding laundry, cleaning dishes, making beds, straightening piles. She and Meghan are in charge of Margie (the dog) while we're gone.
Uncle Jim kept Steve company this morning (and Jackie and the Earwoods dropped by) while Cooper, Katie and I were at church for the last Sunday in Advent.
Katie and fellow preschool singers were adorable during the prelude. Cooper and I had a front-row seat for the singing and wiggling.
They are now with Aunt Mel, Uncle Greg, Brooke and Molli for a cousins sleepover.
I'm staying the night at St. Paul so that I don't miss rounds in the morning or Steve's surgery.
We appreciate your continued prayers.
Saturday, December 20, 2008
Saturday
Steve is still at St. Paul and may be here until Monday.
A couple of medical teams have visited -- hematology/oncology and infectious disease. We are continually reminded that medicine is a science with some wiggle room. One team focuses on one problem, set of data, expected outcomes. The next team focuses on another. They may communicate with one another, but sometimes that's not obvious to the patient.
Here's what we think we know:
1. The bacteria is a form of staph, based on what the infectious disease attending, Dr. S, said. We don't know specifically which strain of staph.
2. A blood sample taken yesterday did not show signs of bacteria. I don't think this means it's gone altogether, but it's still good news.
3. Infectious disease recommends that Steve's chest port be removed. (Dr. S says that there's no way to sterilize the plastic once it's in. He could be on antibiotics for three months to keep the staph away, but as soon as he stops the antibiotics, the staph would return.)
4. Another chest port could be placed. Or a PICC line, a semi-permanent IV line, could be placed in his arm.
5. He'll most likely stay at St. Paul until Monday.
Steve's spirits are good. He's eating really well and enjoying short visits and silly movies.
Will visited for a few hours last night, bearing ice cream and the movie Stepbrothers.
Cooper, Katie and I arrived this morning. The kids have handled the past few days well, but they were obviously missing their sweet Daddy. They had bed rides, pushing all the buttons for maximum fun; watched Enchanted in bed; ate ice cream and drank chocolate milk raided from the refreshment pantry; and walked around the campus with our friend Stuart and his daughter, Hannah.
Jim and Betty picked them up for lunch and an afternoon of Grandma and Papa time.
We took advantage of the quiet time; Steve and I rested and napped off and on. Sharon brought lunch and treats and brightened the room.
I'm headed north soon. The kids and I will sleep at home, and Katie will sing with fellow preschoolers at church in the morning.
We have a long prayer list. We want Steve to recover quickly and completely from this latest episode. We also want him home and healthy for Christmas this year. It's hard to forget that last year we spent most of Christmas Day in the emergency room and then a hospital room.
We are confident, though, that no matter where he is, we will fully experience the spirit and joy of Christmas.
A couple of medical teams have visited -- hematology/oncology and infectious disease. We are continually reminded that medicine is a science with some wiggle room. One team focuses on one problem, set of data, expected outcomes. The next team focuses on another. They may communicate with one another, but sometimes that's not obvious to the patient.
Here's what we think we know:
1. The bacteria is a form of staph, based on what the infectious disease attending, Dr. S, said. We don't know specifically which strain of staph.
2. A blood sample taken yesterday did not show signs of bacteria. I don't think this means it's gone altogether, but it's still good news.
3. Infectious disease recommends that Steve's chest port be removed. (Dr. S says that there's no way to sterilize the plastic once it's in. He could be on antibiotics for three months to keep the staph away, but as soon as he stops the antibiotics, the staph would return.)
4. Another chest port could be placed. Or a PICC line, a semi-permanent IV line, could be placed in his arm.
5. He'll most likely stay at St. Paul until Monday.
Steve's spirits are good. He's eating really well and enjoying short visits and silly movies.
Will visited for a few hours last night, bearing ice cream and the movie Stepbrothers.
Cooper, Katie and I arrived this morning. The kids have handled the past few days well, but they were obviously missing their sweet Daddy. They had bed rides, pushing all the buttons for maximum fun; watched Enchanted in bed; ate ice cream and drank chocolate milk raided from the refreshment pantry; and walked around the campus with our friend Stuart and his daughter, Hannah.
Jim and Betty picked them up for lunch and an afternoon of Grandma and Papa time.
We took advantage of the quiet time; Steve and I rested and napped off and on. Sharon brought lunch and treats and brightened the room.
I'm headed north soon. The kids and I will sleep at home, and Katie will sing with fellow preschoolers at church in the morning.
We have a long prayer list. We want Steve to recover quickly and completely from this latest episode. We also want him home and healthy for Christmas this year. It's hard to forget that last year we spent most of Christmas Day in the emergency room and then a hospital room.
We are confident, though, that no matter where he is, we will fully experience the spirit and joy of Christmas.
Friday, December 19, 2008
Bacteria
Yesterday's blood work revealed bacteria as the culprit behind Steve's illness.
Two samples were drawn -- directly from the new port in his chest and from his arm. Both samples showed bacteria. The working theory is that it's the port's fault. Perhaps a tiny bit of bacteria was pushed into the port during infusion or a blood draw, and then the cell just started doing what cells do -- multiplying.
Damm port. (Ha! Damm humor just never gets old.)
It will take more lab work and more time to determine the exact strain of bacteria. We do know that it's gram-positive cocci (it showed up blue under the microscope and it's round). That alone tells the doctors which antibiotic he should continue to take for now. Yesterday he was receiving two different umbrella antibiotics; now he's receiving just one.
When lab results show which bacteria it is, doctors will know precisely which antibiotic to give him.
He will require two weeks of IV antibiotics. Thank goodness that doesn't mean he'll be here for two weeks.
Steve will be here until at least Saturday, maybe until Sunday. While he's here, the staff will be arranging for home health care so that he can receive the IV drugs at home.
Dr. G, the attending oncologist/hematologist, recommends that Steve not resume chemotherapy treatment until the end of the two-week treatment.
He explained that there are few things as scary as a brain tumor. But in the short term, bacteria in the blood is scarier.
Steve is feeling so much better than yesterday. He is sitting up without assistance, able to walk slowly, eating huge portions, laughing, asking questions, charming the nurses.
Jim reports that he slept well on the cot. After Betty arrived, he left to get ready for a meeting. Then Katie and I arrived. Katie cuddled with her Daddy for a while, and then we went on a little adventure.
Both she and Cooper were born on the fifth floor here. Katie loves babies, so I took her to labor and delivery to find some newborns. We saw four tiny babies -- three sleeping, one screaming. Then we visited with the nurses. Katie twirled in her Christmas dress and talked about being 3.
Betty took Katie back to her house, and I've been with Steve ever since.
Just before Layne arrived with pizza for lunch, a technician arrived for an in-room echocardiogram. She spent about 30 minutes capturing images of his heart and supporting systems. It was fascinating lunch entertainment.
Two samples were drawn -- directly from the new port in his chest and from his arm. Both samples showed bacteria. The working theory is that it's the port's fault. Perhaps a tiny bit of bacteria was pushed into the port during infusion or a blood draw, and then the cell just started doing what cells do -- multiplying.
Damm port. (Ha! Damm humor just never gets old.)
It will take more lab work and more time to determine the exact strain of bacteria. We do know that it's gram-positive cocci (it showed up blue under the microscope and it's round). That alone tells the doctors which antibiotic he should continue to take for now. Yesterday he was receiving two different umbrella antibiotics; now he's receiving just one.
When lab results show which bacteria it is, doctors will know precisely which antibiotic to give him.
He will require two weeks of IV antibiotics. Thank goodness that doesn't mean he'll be here for two weeks.
Steve will be here until at least Saturday, maybe until Sunday. While he's here, the staff will be arranging for home health care so that he can receive the IV drugs at home.
Dr. G, the attending oncologist/hematologist, recommends that Steve not resume chemotherapy treatment until the end of the two-week treatment.
He explained that there are few things as scary as a brain tumor. But in the short term, bacteria in the blood is scarier.
Steve is feeling so much better than yesterday. He is sitting up without assistance, able to walk slowly, eating huge portions, laughing, asking questions, charming the nurses.
Jim reports that he slept well on the cot. After Betty arrived, he left to get ready for a meeting. Then Katie and I arrived. Katie cuddled with her Daddy for a while, and then we went on a little adventure.
Both she and Cooper were born on the fifth floor here. Katie loves babies, so I took her to labor and delivery to find some newborns. We saw four tiny babies -- three sleeping, one screaming. Then we visited with the nurses. Katie twirled in her Christmas dress and talked about being 3.
Betty took Katie back to her house, and I've been with Steve ever since.
Just before Layne arrived with pizza for lunch, a technician arrived for an in-room echocardiogram. She spent about 30 minutes capturing images of his heart and supporting systems. It was fascinating lunch entertainment.
Today is Cooper's last day of school before the new year; it's also his winter party. After the unsettled week at home, I didn't want him "alone" at the party. Uncle Greg left work early today to be his adult, plus Holly left her own boys' parties to check in and take photos.
Cooper, with Uncle Greg in back
Recap:
1. Bacteria caused Steve's sudden illness.
2. More lab time is needed to identify the exact strain.
3. With that information, the best antibiotic will be given.
4. Steve will stay at St. Paul tonight and maybe longer.
5. He'll require two weeks of IV antibiotics at home.
Thursday, December 18, 2008
Divided Damms
After Steve was delivered to his room, my frustration level peaked. There were no orders upon his arrival -- no instructions for the nursing staff, no permission to access his port, no orders for the IV antibiotics, no clue about when a CT scan of his chest would be scheduled, not even permission to administer Tylenol.
Plus, his temperature was 102.
His RN did the best she could with limited instructions. I wandered the floor, asking questions, then paged and spoke with Dr. M about the lack of a plan.
I had to leave before anything could be resolved, and I was not comfortable. Steve was in good hands, though -- Mary M.T. was left in charge as I drove north to pick up Katie and eventually Cooper.
Mary called about an hour after I had left to report progress. He had received drugs and was on his way to imaging for the chest scan. (They're looking for something that an X-ray might have missed.)
Betty then arrived to relieve Mary. Then Sharon arrived with dinner for Steve and Betty. (We love many aspects of St. Paul but know from experience that the food there is awful. Really inedible.)
After Sharon left the hospital, she called to tell me that Steve was in great spirits -- he was cheerful, completely lucid and able to move his left arm. Oh, what a difference 12 hours, rest and IV antibiotics make!
I am home with the kids, who are asleep after their exciting day. (Katie sang in her preschool program and celebrated Christmas with her class. Cooper spent the early morning with friends and the whole afternoon at the Bassen home.) Steve is in his hospital room. Betty will be with him until Jim can arrive (after an evening board meeting). Jim will spend the night -- and sleep, we hope -- on a sad little cot.
Big thanks to Frisco paramedics, Layne, Liz, Holly, Bob, Andy, Zita, Julie, Pastor Andy, Mary M.T., Aimee, Carol, Angie, Kevin, Sharon and Melissa S. for help today.
We look forward to some answers (or at least eliminated culprits) tomorrow and to Steve's continued progress.
Plus, his temperature was 102.
His RN did the best she could with limited instructions. I wandered the floor, asking questions, then paged and spoke with Dr. M about the lack of a plan.
I had to leave before anything could be resolved, and I was not comfortable. Steve was in good hands, though -- Mary M.T. was left in charge as I drove north to pick up Katie and eventually Cooper.
Mary called about an hour after I had left to report progress. He had received drugs and was on his way to imaging for the chest scan. (They're looking for something that an X-ray might have missed.)
Betty then arrived to relieve Mary. Then Sharon arrived with dinner for Steve and Betty. (We love many aspects of St. Paul but know from experience that the food there is awful. Really inedible.)
After Sharon left the hospital, she called to tell me that Steve was in great spirits -- he was cheerful, completely lucid and able to move his left arm. Oh, what a difference 12 hours, rest and IV antibiotics make!
I am home with the kids, who are asleep after their exciting day. (Katie sang in her preschool program and celebrated Christmas with her class. Cooper spent the early morning with friends and the whole afternoon at the Bassen home.) Steve is in his hospital room. Betty will be with him until Jim can arrive (after an evening board meeting). Jim will spend the night -- and sleep, we hope -- on a sad little cot.
Big thanks to Frisco paramedics, Layne, Liz, Holly, Bob, Andy, Zita, Julie, Pastor Andy, Mary M.T., Aimee, Carol, Angie, Kevin, Sharon and Melissa S. for help today.
We look forward to some answers (or at least eliminated culprits) tomorrow and to Steve's continued progress.
In a room
Steve has been moved to a tiny room on the third floor. The view is dreary -- rooftops and parking lots. We look forward to his healthy release soon!
Because of the size of the room, Steve's exhaustion and uncertainty about what ails him, we'll need to limit hospital visits. Please e-mail me (tyradamm(at)gmail.com) or call my cell if you'd like to arrange a visit.
Thank you!
Because of the size of the room, Steve's exhaustion and uncertainty about what ails him, we'll need to limit hospital visits. Please e-mail me (tyradamm(at)gmail.com) or call my cell if you'd like to arrange a visit.
Thank you!
ER background and update
Steve felt more tired than usual yesterday. His left side started weakening. He napped longer than usual after work.
Before bed he had a fever of 100.2, which is equivalent to about 102 (the steroids he takes masks a fever).
We called Dr. M, who advised him to take Tylenol and wait to be examined until morning. (He was scheduled for his second dose of chemotherapy at 9 a.m. today.)
He slept poorly and continued to lose control of his left arm. At 5 a.m., his fever was 103 -- the equivalent of 105.
We talked with Dr. M again, who advised us to call an ambulance so he could be seen immediately.
We were able to request transport to St. Paul -- a huge victory. The nearest major hospital is Plano Presbyterian, which is a fine hospital but not part of the UT-SW system. We wanted him here so that records would be available and so that we would be able to see Dr. M and her team.
The kids were still sleeping when the ambulance and fire truck arrived. We are thankful that they didn't have to see the bright lights, which looked frightening in the foggy dark sky.
I called Steve's parents and asked them to be at St. Paul to meet him. Layne came over to help me with the kids, who woke earlier than usual. Layne took Cooper to his house and then to the Bassen house, and he arrived at school in plenty of time and with good spirits, sources say.
I took Katie to Andy and Zita's. Zita cared for her and dressed her for the Christmas program and party at preschool.
Andy drove with me in the dark fog, and we arrived at St. Paul in time to relieve Jim and Betty, who attended Katie's program.
Steve has been in an uncomfortable ER bed since he arrived -- the bed is much too short for his 6-foot-1-inch frame.
The staff took a chest X-ray, which came back clear. They took blood samples; results will take 24 hours.
His temperature is lower, though it has fluctuated and he is experiencing chills right now.
The problem could be an infection at the port site in his chest. The skin isn't swollen, red, warm or painful, though. He could have a random virus.
We are waiting for a room to open upstairs. He'll be officially admitted then and will stay at least overnight.
There is no possibility that he'll receive his chemo treatment today. There is a slight chance he'll receive it Friday. Saturday and Sunday aren't options (the oncology clinic is closed). We desperately pray that he'll receive it by Monday. We're not comfortable waiting, giving the tumor room to grow, but we also understand the importance of waiting until his body can better handle the powerful drugs.
He is so tired and so weak. Some of that may be because he didn't take his normal morning medications until 1 p.m. -- the steroids, Diamox and Provigil are essential.
He napped some this morning and appears to be sleeping right now.
Recap:
1. Steve's high fever required quick attention.
2. Blood test results should give us a better idea of the source of the infection.
3. He will spend at least tonight at St. Paul.
Of course, we welcome your prayers for his health and strength and for wisdom for the medical team.
Before bed he had a fever of 100.2, which is equivalent to about 102 (the steroids he takes masks a fever).
We called Dr. M, who advised him to take Tylenol and wait to be examined until morning. (He was scheduled for his second dose of chemotherapy at 9 a.m. today.)
He slept poorly and continued to lose control of his left arm. At 5 a.m., his fever was 103 -- the equivalent of 105.
We talked with Dr. M again, who advised us to call an ambulance so he could be seen immediately.
We were able to request transport to St. Paul -- a huge victory. The nearest major hospital is Plano Presbyterian, which is a fine hospital but not part of the UT-SW system. We wanted him here so that records would be available and so that we would be able to see Dr. M and her team.
The kids were still sleeping when the ambulance and fire truck arrived. We are thankful that they didn't have to see the bright lights, which looked frightening in the foggy dark sky.
I called Steve's parents and asked them to be at St. Paul to meet him. Layne came over to help me with the kids, who woke earlier than usual. Layne took Cooper to his house and then to the Bassen house, and he arrived at school in plenty of time and with good spirits, sources say.
I took Katie to Andy and Zita's. Zita cared for her and dressed her for the Christmas program and party at preschool.
Andy drove with me in the dark fog, and we arrived at St. Paul in time to relieve Jim and Betty, who attended Katie's program.
Steve has been in an uncomfortable ER bed since he arrived -- the bed is much too short for his 6-foot-1-inch frame.
The staff took a chest X-ray, which came back clear. They took blood samples; results will take 24 hours.
His temperature is lower, though it has fluctuated and he is experiencing chills right now.
The problem could be an infection at the port site in his chest. The skin isn't swollen, red, warm or painful, though. He could have a random virus.
We are waiting for a room to open upstairs. He'll be officially admitted then and will stay at least overnight.
There is no possibility that he'll receive his chemo treatment today. There is a slight chance he'll receive it Friday. Saturday and Sunday aren't options (the oncology clinic is closed). We desperately pray that he'll receive it by Monday. We're not comfortable waiting, giving the tumor room to grow, but we also understand the importance of waiting until his body can better handle the powerful drugs.
He is so tired and so weak. Some of that may be because he didn't take his normal morning medications until 1 p.m. -- the steroids, Diamox and Provigil are essential.
He napped some this morning and appears to be sleeping right now.
Recap:
1. Steve's high fever required quick attention.
2. Blood test results should give us a better idea of the source of the infection.
3. He will spend at least tonight at St. Paul.
Of course, we welcome your prayers for his health and strength and for wisdom for the medical team.
ER
We are at the St. Paul ER. Steve had a rough night and woke up at 5 with a 103-degree fever and significant left-side weakness. Dr. M wanted him seen right away, so an ambulance picked him up.
More details soon.
Wednesday, December 17, 2008
Music for the soul
So, how do you make an awesome day even better? You add carolers, of course!
After we watched the final See Spot Run team member cross the finish line, Steve and I received and gave more hugs and then headed north for lunch and home.
Jim and Betty took Cooper and Katie back to their house, so we had a few hours of quiet time to rest and recover.
Liz and Kris (pictured above) had asked that the whole family be home by 5 p.m. for a surprise. And I was told to not be in my pajamas already!
Jim, Betty and Uncle Jim brought the kids home just in time for a great treat -- almost 50 friends gathered on our front lawn to serenade us with Christmas carols.
They sang:
Deck the Halls
Angels We Have Heard on High
Away in a Manger
The First Noel
Frosty the Snowman
Jingle Bells
Rudolph the Red-Nosed Reindeer
Santa Claus is Coming to Town
Silent Night
Joy to the World
Oh Holy Night
We Wish You a Merry Christmas
As soon as the last note ended, Cooper bolted from his spot next to us to say hello to his teacher, Aimee Sanchez (pictured above). He was over-the-top excited that she visited his house.
We are blessed to be a part of the Bledsoe family and incredibly thankful for the teachers and staff members who continue to take special care of our family. We are touched that so many families devoted time on a Sunday to wish us a merry Christmas. We are in awe of folks like Liz, Kris and Holly, who take great care of their own families and still make time to take care of us.
We're just a week from Christmas, and some of you may be stressed. Maybe you think you have more gifts to buy. Perhaps instead of spending money, you could give the loved ones on your list your time. You could sing for them, or cook for them, or set aside an afternoon to visit.
Late Sunday night, Steve declared himself "the luckiest man on earth."
He didn't receive any material gift that prompted that bold statement. He received an outpouring of love that overwhelmed him in the best possible way.
After we watched the final See Spot Run team member cross the finish line, Steve and I received and gave more hugs and then headed north for lunch and home.
Jim and Betty took Cooper and Katie back to their house, so we had a few hours of quiet time to rest and recover.
Liz and Kris (pictured above) had asked that the whole family be home by 5 p.m. for a surprise. And I was told to not be in my pajamas already!
Jim, Betty and Uncle Jim brought the kids home just in time for a great treat -- almost 50 friends gathered on our front lawn to serenade us with Christmas carols.
The group represented so many of the members of our beloved community -- family, friends from Bledsoe Elementary, neighbors, Jim and Betty's friends (who have known Steve since he was a teen and have some great stories to share). Some of them had already devoted hours for our family that weekend -- at the pre-race dinner and the race itself.
We sat on the front walkway and enjoyed the sweet gift of their time and talents. Our spirits were already soaring from the weekend. The carols just pushed us even higher.
They sang:
Deck the Halls
Angels We Have Heard on High
Away in a Manger
The First Noel
Frosty the Snowman
Jingle Bells
Rudolph the Red-Nosed Reindeer
Santa Claus is Coming to Town
Silent Night
Joy to the World
Oh Holy Night
We Wish You a Merry Christmas
As soon as the last note ended, Cooper bolted from his spot next to us to say hello to his teacher, Aimee Sanchez (pictured above). He was over-the-top excited that she visited his house.We are blessed to be a part of the Bledsoe family and incredibly thankful for the teachers and staff members who continue to take special care of our family. We are touched that so many families devoted time on a Sunday to wish us a merry Christmas. We are in awe of folks like Liz, Kris and Holly, who take great care of their own families and still make time to take care of us.
We're just a week from Christmas, and some of you may be stressed. Maybe you think you have more gifts to buy. Perhaps instead of spending money, you could give the loved ones on your list your time. You could sing for them, or cook for them, or set aside an afternoon to visit.
Late Sunday night, Steve declared himself "the luckiest man on earth."
He didn't receive any material gift that prompted that bold statement. He received an outpouring of love that overwhelmed him in the best possible way.
Monday, December 15, 2008
Radiant
Steve with Katie, Sharon, Clay, Melane and MolliSteve was absolutely radiant yesterday. The See Spot Run runners and huge support team lifted his spirits beyond anything I could have imagined. Last night he declared himself the luckiest man in the world.
More than one person has reminded me lately that as we are praying for the "big miracle" -- the cure for Steve's cancer -- we can't ignore the other miracles. At a church meeting tonight, Pastor Andy talked about miracles as signs of God that we notice in everyday life.
Sunday was definitely a day of miracles.
Steve was surrounded by love and peace and joy. His energy was infectious.
The weather was warmer and windier than I think most of us runners wanted. (I am thankful that we ran before the bitter cold blew through Dallas late Sunday.) And I think the thousands of White Rock spectators appreciated the pleasant conditions.
Steve, Allison and I stayed at the W Hotel the night before, thanks to Liz's early reservation. We were able to sleep relatively late and take our time getting ready -- we just took the elevator downstairs and walked outside to the starting area.
As the runners sectioned off into three starting corrals (based on expected running time), Liz and Holly took charge of Steve, helping him find a good spot to watch the start.
Liz and Holly Then we were off!
Veteran Rock runner Steve had told Allison and me about the handbell choir we'd encounter on the first mile. And there they were, a reward at the top of a daunting Ross Avenue hill. I loved seeing and hearing the choir, knowing how much Steve enjoyed the music when he ran.
The next great treat was Sarah Wilke and Nancy Kruh cheering us on in Uptown. Not long after, we ran across the Domen family (Jeff and three adorable children), showing support for their Melanie and the See Spot Run team.
Melanie, Allison and I ran together for the first six miles. Melanie was the first leg of one of the relay teams, which switched at mile 6. About that time we spied most of the Smith family (Layne and three beautiful children), taking photos and giving high fives.
Allison and I kept running. As we ran along one side of Matilda, we saw Sally, then Stuart, then Jim, run back the other side. They were all ahead of us, and they all looked strong.
Just after we crossed Central Expressway for the second time and we started running south, the wind and accompanying dirt hit us hard. We trudged along.
The Katy Trail offered more surprises. The Brown family (Kris, James and their three gorgeous girls) plus the Domens again were there to boost our spirits. As soon as they saw us coming, they started hollering, and they didn't stop until we were out of earshot.
With about a mile to go, I was really dragging. I knew we would finish, but my legs and feet were unhappy.
Then we saw Will, not too far from the end of the Katy Trail. He told us that we were almost there, that the rest of the run was downhill, and that there was a big crowd of yellow waiting.
What an awesome sight! Liz, Holly and Melane had scoped out a great watching post and planted a camp chair for Steve. He was surrounded by Cooper and Katie (chaperoned by Grandma and Papa), a great crowd of more family, friends and runners who'd already finished. Over the fence I handed sweet Steve my finisher's medal.
He exuded joy.
Just after Allison and I finished
After lots of congratulatory hugs and kisses, we headed to the other side of the American Airlines Center to watch the full marathon runners cross.
Mark crossed with great speed and a huge smile. The See Spot Run relay team gathered to cross the finish line together. Then the See Spot Run 2 team finished strong.
Steve with See Spot Run: Randy, Andy (with son Jared), Paul, Chris and Melanie
Lisa (of See Spot Run 2) and Steve
Steve was exhausted, but he was drawing strength from "his" runners. He positively glowed, reflecting the love that was surrounding him.
And the day got even better. Check back soon for details on our surprise carolers!
--------------------
Photos
For more photos, taken by Melane, Steve, Layne and me, click here.
John
Greg
Steve and Melane
Sharon
Steve and Stuart
Uncle Jim
Tyra and Allison
Brooke, Katie and Molli
Jim, Betty, Uncle Jim, Cooper and Katie
Cooper and Will
Mark
Cooper, Katie and Sally
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Results
For results, click on each name:
Greg Woodbury
Sharon Grigsby
John Wise
Sally Sims
Stuart Cutright
Jim Damm
Allison Earwood
Tyra Damm (Allison and I actually finished four minutes faster than expected!)
Mark Tittle
See Spot Run relay team (Melanie Domen, Randy Lasley, Paul Duddleston, Andy Lewis, Chris Werner)
See Spot Run 2 relay team (Lisa Cutright, Kelly Huffman, James Demasi, Jackie Trey Harrison, Jason Lee)
--------------------
Thank you to ...
* All the See Spot Run runners and their families and friends who supported them during training
* Liz, captain of the team, organizer extraordinaire and supreme motivator
* Jim and Betty
* Jim and Betty's awesome gang of friends
* Elaine Dunn
* Layne
* Holly Bassen
* Melane
* Kris Brown
* Sally
* Allison
* Richie Whitt
* Everyone who bought a shirt in support of Steve (Melissa, Norm and Roy: I'll mail yours this week!)
* Folks who sent good luck notes
* Everyone who prayed for us
* And to Steve, our inspiration. Out Damm Spot!
Pre-race photos
Jim & Betty's friend Leonard was the official Damm photographer Saturday night. Click here to get a feel for the great fellowship the night before the big race.
Sunday, December 14, 2008
We rocked the Rock
Allison, Tyra and Melanie at about mile 6I will post a more complete account later. For now, know that all runners crossed the finish line and there were many cheerleaders along the way. Steve is worn out but happy. He called today "miraculous."
Saturday, December 13, 2008
Run for Steve runners
Steve's parents and brother hosted a lovely and lively pre-race dinner this afternoon. Many of the Run for Steve runners were there. Pictured above: Tyra, Steve, Sally S., Allison E., Randy L., Sharon G., Melanie D., Lisa C., Andy L., Paul D., Greg W., Stuart C., Jim D. and John W.
Mark T. was out driving the course and missed the group shot. I told him I'd "Photoshop" him in later. I overstated my skills. So here he is, on his own.
Here's another group shop, with many of our children added, plus Liz Smith (on the far left), the organizer extraordinaire and team captain of Run for Steve: See Spot Run.
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Updated with Mark!
Updated with Mark!
As Layne often does, he swooped in and made things better. Here's the group photo, now with Mark.
Friday, December 12, 2008
'Lots of yellow people'
Katie and I walked Steve into work today. I wanted to help Steve carry his computer bag, and Katie wanted a piece of candy.
Katie was excited to see so many people dressed just like her -- in a See Spot Run T-shirt! As a show of support, staff members from the clinics where Steve works bought more than 50 shirts.
As we gathered for a group photo, Katie bounced up and down, chanting, "Lots of yellow people!"
Here we are with the Plano clinic staff. Thanks, PFC!
Thursday, December 11, 2008
Happy new year!
A year ago today an MRI showed a lesion in the pons of Steve's brain stem.
Many of you have been a part of our adventure ever since. Others have hopped aboard along the way. Every day, when I say prayers of thanks, I include you -- the folks who have prayed with us and for us, who have offered gifts, who have cared for us and our children.
Instead of retelling the pain of the last year, I asked Steve to share some of his favorite things. I first asked for a list of 10. Not enough, he said. I asked for 20. Still, not enough. Whatever it takes, I said!
His list isn't inclusive, and it's in no particular order:
Some of Steve's favorite things from the past year
Katie dancing
Cooper playing soccer
N999DM
Easter
Margie (Sweeters)
Taking Cooper to see Wicked in Chicago
Disneyland
Tyra
Birthdays
Autumn’s colors
The Wire
Love from friends old and new, neighbors, co-workers and strangers
Facebook
Lazy rivers
Books
Family
Chickens
Every new day
Bathing my kids
Electric blankets
Washing the dishes
Fleece
Parades
Our Christmas tree
Amazing doctors, nurses and staff
Baskin Robbins’ Peanut Butter 'n Chocolate Ice Cream
Superbad
My iPod
Run for Steve
Cracking myself up
The Nasher
Too many more blessings to possibly list here
Many of you have been a part of our adventure ever since. Others have hopped aboard along the way. Every day, when I say prayers of thanks, I include you -- the folks who have prayed with us and for us, who have offered gifts, who have cared for us and our children.
Instead of retelling the pain of the last year, I asked Steve to share some of his favorite things. I first asked for a list of 10. Not enough, he said. I asked for 20. Still, not enough. Whatever it takes, I said!
His list isn't inclusive, and it's in no particular order:
Some of Steve's favorite things from the past year
Katie dancing
Cooper playing soccer
N999DM
Easter
Margie (Sweeters)
Taking Cooper to see Wicked in Chicago
Disneyland
Tyra
Birthdays
Autumn’s colors
The Wire
Love from friends old and new, neighbors, co-workers and strangers
Lazy rivers
Books
Family
Chickens
Every new day
Bathing my kids
Electric blankets
Washing the dishes
Fleece
Parades
Our Christmas tree
Amazing doctors, nurses and staff
Baskin Robbins’ Peanut Butter 'n Chocolate Ice Cream
Superbad
My iPod
Run for Steve
Cracking myself up
The Nasher
Too many more blessings to possibly list here
Wednesday, December 10, 2008
Steve in the Dallas Observer
This week's Dallas Observer hit newsstands today. Inside you'll find a column by Richie Whitt about brave Steve and the Damm Spot.
In case you can't find a copy, you can read the column online. Click here.
In case you can't find a copy, you can read the column online. Click here.
Clean X-ray
Steve narrowly avoided a hospital stay today. His low pulse-oxygen level, shortness of breath, crackling, wheezing and cough worried Dr. M and the internal medicine doctor she brought along with her. Dr. M said they were prepared to admit him.
His chest X-ray came back clear, though. Woo hoo!
So instead of checking into a hospital room tonight, we are thrilled to be in our cozy home with our sweet babies. (And we came home to a delicious dinner, created by one of my high school friends rediscovered on Facebook. Thanks, Angela!)
The doctors think Steve has reactive airway disease -- perhaps a virus that's caught in his chest. Tonight he'll start breathing treatments, which require a nebulizer, to more quickly relieve his symptoms.
The Frisco medical supply store that carries nebulizers was closing as we were in traffic on the Tollway, so we thought he would have to wait until the morning. But then the Spears family came to the rescue! They're letting us borrow theirs for the night.
He'll also begin using an additional steroid.
Dr. M was, of course, relieved that Steve hasn't aspirated and that he shows no signs of pneumonia. And she was delighted to see how well Steve is walking and using his left arm. She wrapped us both in big hugs.
She says she doesn't like to overstate anything, but that she feels confident that the combination of Avastin and CPT-11 is killing cancer cells. Another miracle for Steve!
His chest X-ray came back clear, though. Woo hoo!
So instead of checking into a hospital room tonight, we are thrilled to be in our cozy home with our sweet babies. (And we came home to a delicious dinner, created by one of my high school friends rediscovered on Facebook. Thanks, Angela!)
The doctors think Steve has reactive airway disease -- perhaps a virus that's caught in his chest. Tonight he'll start breathing treatments, which require a nebulizer, to more quickly relieve his symptoms.
The Frisco medical supply store that carries nebulizers was closing as we were in traffic on the Tollway, so we thought he would have to wait until the morning. But then the Spears family came to the rescue! They're letting us borrow theirs for the night.
He'll also begin using an additional steroid.
Dr. M was, of course, relieved that Steve hasn't aspirated and that he shows no signs of pneumonia. And she was delighted to see how well Steve is walking and using his left arm. She wrapped us both in big hugs.
She says she doesn't like to overstate anything, but that she feels confident that the combination of Avastin and CPT-11 is killing cancer cells. Another miracle for Steve!
To be safe
Steve's cough has worsened the past two days. Coughing fits are waking him up at night, and then he's awake for a couple of hours. His pulse-oxygen level has dropped again, and there is wheezing in both lungs.
He's been taking an antibiotic for about a week, plus he's been on an anti-pneumonia drug since January. Still, we want to be sure he's completely OK.
We're headed to UT-SW for a chest X-ray and appointment with Dr. M.
With just two phone calls, I was able to get afternoon care for both Cooper and Katie lined up. Thanks, Betty and Cathy, for always making our lives easier!
He's been taking an antibiotic for about a week, plus he's been on an anti-pneumonia drug since January. Still, we want to be sure he's completely OK.
We're headed to UT-SW for a chest X-ray and appointment with Dr. M.
With just two phone calls, I was able to get afternoon care for both Cooper and Katie lined up. Thanks, Betty and Cathy, for always making our lives easier!
Monday, December 8, 2008
Symptom update
It's hard to believe that we are just five days removed from Steve's treatment. His symptoms are so much improved. In fact, he felt well enough to work in the office for a few hours and again when he came home.
His left arm and hand are almost as responsive as his right arm and hand.
He's tired but closer to his "normal" exhaustion level.
His walk is much steadier. It's actually less stable today than yesterday, but it's still far better than Thursday.
His voice is weak, probably weaker than Thursday, but he's blaming part of that on his parade exuberance.
His cough, which was wheezy and slightly crackly this weekend, is better. After talking with Dr. M on the phone yesterday, he started using a rescue inhaler, which has helped.
Dr. M cautioned us that as the tumor cells die, they expand and release toxins. So, some of his symptoms could worsen again before they settle again to a manageable level.
We have so much to look forward to during the next few weeks -- Christmas parties, the marathon, special celebrations. And now we look forward to the next round of Avastin and CPT-11 on Dec. 18. Out Damm Spot!
His left arm and hand are almost as responsive as his right arm and hand.
He's tired but closer to his "normal" exhaustion level.
His walk is much steadier. It's actually less stable today than yesterday, but it's still far better than Thursday.
His voice is weak, probably weaker than Thursday, but he's blaming part of that on his parade exuberance.
His cough, which was wheezy and slightly crackly this weekend, is better. After talking with Dr. M on the phone yesterday, he started using a rescue inhaler, which has helped.
Dr. M cautioned us that as the tumor cells die, they expand and release toxins. So, some of his symptoms could worsen again before they settle again to a manageable level.
We have so much to look forward to during the next few weeks -- Christmas parties, the marathon, special celebrations. And now we look forward to the next round of Avastin and CPT-11 on Dec. 18. Out Damm Spot!
Sunday, December 7, 2008
Guest blogger Liz: Cheer on Steve's team!
All,
One week from today, the See Spot Run Team will be hitting the streets of Dallas in honor of our dear friend Steve Damm!
For months the runners have been diligently training for their opportunity to support Steve. Now, it's time for the support crew to prepare.
We need to have as many supporters as possible lining the course, cheering on our team! As it stands now, we have about 16 people running the half, one running the whole, and two relay teams running the whole.
To make this as easy as possible, we'd like for supporters to spread out along the course. We suggest picking an aid station from the map at the link attached and email me with your preferred location so we can let the runners know to keep an eye out for you. When you look at the map, the aid stations are indicated by red dots. Those are the locations we'd like you to pick from. However, your support is much more important than your location so if you have a favorite spot or a place that's works better for you, by all means, show your support however and wherever you can.
The map is located at the following address: http://runtherock.com/race_info/pdfs/TheRockMap2008combined_CLIF.pdf
We don't want everyone bunched up at the beginning of the race so if you can find a station or location towards the end of the course, I'm sure the runners would appreciate it. Your encouragement is VERY important during the final miles!
All the runners vary in speed. Some run eight minute miles, some 12. Please keep that in mind as you choose your spot because that will give you some idea of when you should arrive and how long you might want to stay. You don't just have to cheer for our team, I know EVERYONE out there would appreciate a little support.
Anyone and everyone reading this who would like to support the team is encouraged to reply.
The team colors are yellow and blue with a grey ribbon representing brain cancer awareness. If you'd like to wear yellow, that would help the runners know that you're there for Steve. If you'd like to make a poster then maybe a yellow one with the team name See Spot Run would be awesome!
What supporters need to do:
1.Download or view the map at the link above.
2. Choose a location from the course map.
3. Email Liz at runforsteve@gmail.com and let her know about where you'll be standing.
Please check back often for updates.
For those interested, Steve and Tyra will be staying at the W Hotel near the American Airlines Center the night before. If you would like to come to the start of the race, Steve and the runners will be in the lobby of the hotel at approximately 7:30 a.m. Look for the team in the yellow shirts.
We're only days away from the big event. Let's all show Steve and the team just how much we support them and their accomplishments!!!
-- Liz
One week from today, the See Spot Run Team will be hitting the streets of Dallas in honor of our dear friend Steve Damm!
For months the runners have been diligently training for their opportunity to support Steve. Now, it's time for the support crew to prepare.
We need to have as many supporters as possible lining the course, cheering on our team! As it stands now, we have about 16 people running the half, one running the whole, and two relay teams running the whole.
To make this as easy as possible, we'd like for supporters to spread out along the course. We suggest picking an aid station from the map at the link attached and email me with your preferred location so we can let the runners know to keep an eye out for you. When you look at the map, the aid stations are indicated by red dots. Those are the locations we'd like you to pick from. However, your support is much more important than your location so if you have a favorite spot or a place that's works better for you, by all means, show your support however and wherever you can.
The map is located at the following address: http://runtherock.com/race_info/pdfs/TheRockMap2008combined_CLIF.pdf
We don't want everyone bunched up at the beginning of the race so if you can find a station or location towards the end of the course, I'm sure the runners would appreciate it. Your encouragement is VERY important during the final miles!
All the runners vary in speed. Some run eight minute miles, some 12. Please keep that in mind as you choose your spot because that will give you some idea of when you should arrive and how long you might want to stay. You don't just have to cheer for our team, I know EVERYONE out there would appreciate a little support.
Anyone and everyone reading this who would like to support the team is encouraged to reply.
The team colors are yellow and blue with a grey ribbon representing brain cancer awareness. If you'd like to wear yellow, that would help the runners know that you're there for Steve. If you'd like to make a poster then maybe a yellow one with the team name See Spot Run would be awesome!
What supporters need to do:
1.Download or view the map at the link above.
2. Choose a location from the course map.
3. Email Liz at runforsteve@gmail.com and let her know about where you'll be standing.
Please check back often for updates.
For those interested, Steve and Tyra will be staying at the W Hotel near the American Airlines Center the night before. If you would like to come to the start of the race, Steve and the runners will be in the lobby of the hotel at approximately 7:30 a.m. Look for the team in the yellow shirts.
We're only days away from the big event. Let's all show Steve and the team just how much we support them and their accomplishments!!!
-- Liz
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