Steve has responded well to today's chemotherapy cocktail. He's had no unpleasant side effects and even made it through the afternoon without a nap! (I can't say the same for me. This cold still troubles me; I took a tiny nap while Katie was sleeping and Cooper was on a walk with the Dubes.)
He is unsteady on his feet, but sadly that's not an unusual symptom these days. This morning Katie asked, "Daddy, why are you so wibbly wobbly?" She asks these kinds of questions frequently and often blames everything on his "crazy eye" -- his right eye that doesn't track with the left.
Mary M.T. brought dinner tonight and stayed with us for a couple of hours. Cooper read a couple of Click, Clack, Moo books aloud to her, and Katie performed some of her newly acquired dance skills (she's taking Delicate Dancers at the athletic center).
Steve is settling in for what we hope is a good, long sleep. The high dose of Decadron keeps him awake at night and wakes him up at odd hours. He's getting by on about four hours of sleep a night but longs for more.
Sweet dreams to you all!
Thursday, January 29, 2009
Live from the infusion room
We just learned that Steve's counts are good enough for chemotherapy this week. Woo hoo! His RN is giving pre-medications now, and Avastin and CPT-11 will follow.
Our adventure started at 7:10 a.m., when we left the house to take Cooper to the Bassen home. (They then took him to school on time with their boys.)
We continued south through the frozen fog (Katie called the air "soggy"), to take Katie to the Fink-DeGraffenreid home. Katie danced into their doorway, and I left with Zita's magical muffins -- pumpkin, cinnamon, pecans, raisins. They always make us happy.
We hit the road again and made it to the cancer center by 8:30 -- plenty of time for the 9 a.m. appointment.
We expect a smooth morning and should be home in time for Katie's return (via Grandma Betty's taxi) and for me to meet Cooper at school to walk him home.
Thanks for checking on Steve and for your many prayers!
Our adventure started at 7:10 a.m., when we left the house to take Cooper to the Bassen home. (They then took him to school on time with their boys.)
We continued south through the frozen fog (Katie called the air "soggy"), to take Katie to the Fink-DeGraffenreid home. Katie danced into their doorway, and I left with Zita's magical muffins -- pumpkin, cinnamon, pecans, raisins. They always make us happy.
We hit the road again and made it to the cancer center by 8:30 -- plenty of time for the 9 a.m. appointment.
We expect a smooth morning and should be home in time for Katie's return (via Grandma Betty's taxi) and for me to meet Cooper at school to walk him home.
Thanks for checking on Steve and for your many prayers!
Wednesday, January 28, 2009
Delay
The ice that fell last night is halting most activity in the Dallas area today. (Good thing. It's crazy and dangerous to drive on ice unless you absolutely have to.)
Cooper's school is closed. Katie's preschool is closed for the second day in a row. Steve will work from home.
And we won't make Steve's 9 a.m. chemotherapy appointment this morning. No worries, though. We'll go tomorrow morning to get Steve's dose of cancer-killing drugs.
When the weather forecasts indicated trouble on Monday, I asked for a backup appointment for Thursday, so he's already on the schedule for 9 a.m. Thursday. I'm sure the cancer center staff will work hard to accommodate everyone who was scheduled for this morning.
The four of us (plus furry Margie) will stay in today and enjoy one another. I'm thinking hot chocolate, a movie, some popcorn, some games, some coloring, some reading ...
Cooper's school is closed. Katie's preschool is closed for the second day in a row. Steve will work from home.
And we won't make Steve's 9 a.m. chemotherapy appointment this morning. No worries, though. We'll go tomorrow morning to get Steve's dose of cancer-killing drugs.
When the weather forecasts indicated trouble on Monday, I asked for a backup appointment for Thursday, so he's already on the schedule for 9 a.m. Thursday. I'm sure the cancer center staff will work hard to accommodate everyone who was scheduled for this morning.
The four of us (plus furry Margie) will stay in today and enjoy one another. I'm thinking hot chocolate, a movie, some popcorn, some games, some coloring, some reading ...
Monday, January 26, 2009
Run for Steve update
Our dear friends Sharon Grigsby and Clay Morton will be running the Austin Half Marathon on Feb. 15 as part of the See Spot Run team. E-mail me if you're also running the race.
Our next Dallas-area See Spot Run event is the White Rock'n'Roll 5-mile run on Saturday, May 2.
That gives you 95 days to improve your time, increase your distance or even start your first step. (Though if you live in North Texas, this wet wintry night is no time to start training!)
I hope you'll consider joining us. I'll post more details as they're available from the Dallas Running Club.
Our next Dallas-area See Spot Run event is the White Rock'n'Roll 5-mile run on Saturday, May 2.
That gives you 95 days to improve your time, increase your distance or even start your first step. (Though if you live in North Texas, this wet wintry night is no time to start training!)
I hope you'll consider joining us. I'll post more details as they're available from the Dallas Running Club.
Sunday, January 25, 2009
Health care
Steve was interviewed by Pastor Andy during both church services this morning. The day's theme was health care.
The interview was not about Steve's cancer-related care but about the care provided by Physicians for Children (PFC).
Almost nine years ago, Steve was hired by Children's Medical Center Dallas to help start a Dallas County pediatric clinic.
The clinic provides a stable medical home for children who would otherwise likely go to the emergency room for basic needs. Most of the patients have Medicaid or have insurance through Children's Health Insurance Program. Most of the patients come from Spanish-speaking families.
Steve helped set up the Bachman Lake-area clinic, and now there are four locations. Children who go to these practices are treated with the same respect and care that Katie and Cooper receive at our private pediatric practice. A PFC patient sees the same doctor each time, providing continuity of care and allowing the family and doctor to establish a relationship.
The children receive preventive care, and the families receive health education. And there are fewer patients with non-emergency needs in the emergency room.
Steve loves that he has a small role in making life better for children.
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Steve seems to have successfully dodged strep this week. Yay! (Cooper seems 100 percent better than Monday; Katie has a nagging cough; I have a cold. It's just that time of the year.)
His left-side sluggishness has waxed and waned all week. We look forward to Wednesday, his next infusion of chemotherapy.
The interview was not about Steve's cancer-related care but about the care provided by Physicians for Children (PFC).
Almost nine years ago, Steve was hired by Children's Medical Center Dallas to help start a Dallas County pediatric clinic.
The clinic provides a stable medical home for children who would otherwise likely go to the emergency room for basic needs. Most of the patients have Medicaid or have insurance through Children's Health Insurance Program. Most of the patients come from Spanish-speaking families.
Steve helped set up the Bachman Lake-area clinic, and now there are four locations. Children who go to these practices are treated with the same respect and care that Katie and Cooper receive at our private pediatric practice. A PFC patient sees the same doctor each time, providing continuity of care and allowing the family and doctor to establish a relationship.
The children receive preventive care, and the families receive health education. And there are fewer patients with non-emergency needs in the emergency room.
Steve loves that he has a small role in making life better for children.
-----------------
Steve seems to have successfully dodged strep this week. Yay! (Cooper seems 100 percent better than Monday; Katie has a nagging cough; I have a cold. It's just that time of the year.)
His left-side sluggishness has waxed and waned all week. We look forward to Wednesday, his next infusion of chemotherapy.
Thursday, January 22, 2009
Innovation
The PICC line in Steve's left arm can't get wet. But Steve still needs to shower. So, each morning we cover the PICC line area on his bicep.
For the first couple of weeks, we used Glad Press'n Seal Wrap and tape. We would wrap his arm in the plasticky stuff and then tape the vertical seam and the top and bottom.
One of Dr. M's nurses recommended another way.
We use a latex glove.
Cut off the four fingers.
Slide the fingerless glove up the arm and then secure with tape on the top and bottom.
The problem with this method is that it's tricky to pull on, and the glove tends to roll at the top.
Steve created his own solution.
He cuts two pieces of tape and attaches them to the side of the glove to create handles.
Then he or I can hold on to the handles and pull up quickly and without much rolling.
Genius! That Steve is always solving problems.
Tuesday, January 20, 2009
Bouncing back
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.
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.
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.
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