Some weeks we do pretty well on our own. Other weeks we require lots of help from others. This was one of those weeks during which we were dependent on our dear friends and family. A glimpse:
Saturday
Two birthday parties
Uncle Jim grocery shops, plays with the kids and vacuums for us.
Jim and Betty bring dinner.
Sunday
Church
Two birthday parties
Uncle Jim takes Cooper to the city pool.
Monday
Swim lessons
Cooper and Katie play at the Biddulph house.
The kids and I take Steve to the hospital for repeat blood work.
The Jackson family provides dinner.
Tuesday
Swim lessons
Betty takes Steve to the pulmonologist.
Cooper's handwriting OT appointment
Madeline and her dear family babysit Cooper and Katie at their house.
Allison washes, dries and folds a load of laundry.
Church-related meeting
Wednesday
Swim lessons
Katie and I take Steve to the cardiologist for an echocardiogram.
The Starnes family takes Cooper to a water park and lets him spend the night.
The Hammons family provides dinner.
Thursday
Swim lessons
Meghan drives Steve to work.
Cooper and Katie play at the Kniering house.
Leti drives Steve home from work.
Madeline babysits Cooper and Katie at our house.
In the middle of all this, Steve is going to work, I'm working from home (and trying to meet multiple deadlines for multiple bosses) and Margie the dog is injured during an unfortunate grooming incident. And Steve is struggling with headaches and decreasing function on his left side.
When we have weeks like this, I am even more aware of how blessed we are. How blessed we are to be surrounded by so many angels, many of them not listed here, who take care of us and pray for us and send notes out of the blue and anticipate our needs before I even realize what they are.
I realize how blessed we are that our children are learning to adapt to many different caregivers, that they are loved by so many generous families. I love Katie's squeal when she sees that Grandma or Papa or Uncle Jim have parked in front of the house. I love watching Cooper explain the intricacies of his latest Lego creation to one of our many visitors. I wish I had had a camera with me this afternoon so I could show you Katie cuddling with Madeline, our sweet 14-year-old sitter and friend.
We know that there are folks fighting cancer and other diseases without the resources and support we've been blessed with. Steve and I are so thankful.
Thursday, July 31, 2008
Tuesday, July 29, 2008
Multiple updates
Blood counts
1. Steve's overall white count is 4.3, which is great!
2. His neutrophils, which were a problem a month ago, are also in range.
3. His lymphocytes (a type of white count) are low. They are 0.4, with "normal" range of 0.7-4.5. Because of this count, he needs to again steer clear of places that might compromise his health. But he doesn't have to completely sequester himself.
Pulmonology
1. His shortness of breath seems to a conditioning problem, caused by lack of activity and prolonged steroid use. Dr. L gave Steve some exercises to do to help improve his lung capacity.
2. The three tests he's gone through the past week came back mostly unremarkable (a good thing!).
3. He has two more pulmonology-related tests now: a sleep study and an echocardiogram. We'll try to get them scheduled in the next couple of weeks and then will follow up with Dr. L.
Headaches and steroids
1. Since Friday, Steve has struggled off and on with a debilitating headache. This morning he could barely move.
2. Last Wednesday was when Steve dropped to 1.5 mg of Decadron.
3. Dr. M thinks the two might be related, so she's asked him to go back to 2 mg to see if the headaches go away.
Thanks for checking on Steve!
1. Steve's overall white count is 4.3, which is great!
2. His neutrophils, which were a problem a month ago, are also in range.
3. His lymphocytes (a type of white count) are low. They are 0.4, with "normal" range of 0.7-4.5. Because of this count, he needs to again steer clear of places that might compromise his health. But he doesn't have to completely sequester himself.
Pulmonology
1. His shortness of breath seems to a conditioning problem, caused by lack of activity and prolonged steroid use. Dr. L gave Steve some exercises to do to help improve his lung capacity.
2. The three tests he's gone through the past week came back mostly unremarkable (a good thing!).
3. He has two more pulmonology-related tests now: a sleep study and an echocardiogram. We'll try to get them scheduled in the next couple of weeks and then will follow up with Dr. L.
Headaches and steroids
1. Since Friday, Steve has struggled off and on with a debilitating headache. This morning he could barely move.
2. Last Wednesday was when Steve dropped to 1.5 mg of Decadron.
3. Dr. M thinks the two might be related, so she's asked him to go back to 2 mg to see if the headaches go away.
Thanks for checking on Steve!
Monday, July 28, 2008
No lab results yet
Steve's first blood sample today (which took four sticks!) was contaminated once it reached the lab. So the kids and I took him to Plano Presby's lab late this afternoon for another try. The lab tech was able to get him on one stick, thank goodness. We're not sure we'll receive results today -- we're thinking Dr. M will have left by the time results are in.
I'll update tomorrow with results. We'll also have some news from pulmonology tomorrow.
I'll update tomorrow with results. We'll also have some news from pulmonology tomorrow.
Sunday, July 27, 2008
Worn out
We're a little worried that Steve's white counts might be low after this week's chemotherapy. He is extremely tired again. He also developed an awful headache Friday afternoon that took a while to subside.
We'll have a better idea of his counts tomorrow. We desperately pray that his body can continue to handle some level of chemotherapy so we can keep fighting.
We'll have a better idea of his counts tomorrow. We desperately pray that his body can continue to handle some level of chemotherapy so we can keep fighting.
Friday, July 25, 2008
Chemo and steroids
Steve is doing well this week. He's had no obvious reactions to the chemotherapy. We'll have a better idea of how his blood is reacting on Monday, when he has blood drawn and tested.
On Wednesday, he stepped down from 2 mg of Decadron to 1.5 mg daily. He says that since then he's felt a little bit wobbly and has noticed some decreased function on his left side, but he's willing (and Dr. M is willing) to take those symptoms in an effort to get off the steroid altogether.
We've had an especially busy week around here -- swim lessons, math games extravaganza for Cooper, doctor's appointments, getting Steve to and from work, extra deadline work for me from home. As always, we're able to pull it off with a huge cast -- this week including Dawn, Carolyn, Betty, Cathy, Leti, Justin and Madeline. Thank you!
Steve should have plenty of resting opportunities this weekend. I'm taking Cooper and/or Katie to four birthday parties in two days, so the house will be quiet for big blocks of time.
On Wednesday, he stepped down from 2 mg of Decadron to 1.5 mg daily. He says that since then he's felt a little bit wobbly and has noticed some decreased function on his left side, but he's willing (and Dr. M is willing) to take those symptoms in an effort to get off the steroid altogether.
We've had an especially busy week around here -- swim lessons, math games extravaganza for Cooper, doctor's appointments, getting Steve to and from work, extra deadline work for me from home. As always, we're able to pull it off with a huge cast -- this week including Dawn, Carolyn, Betty, Cathy, Leti, Justin and Madeline. Thank you!
Steve should have plenty of resting opportunities this weekend. I'm taking Cooper and/or Katie to four birthday parties in two days, so the house will be quiet for big blocks of time.
Monday, July 21, 2008
Chemo starts again tonight
Steve's blood drawn today came back with numbers in good range, so Dr. M gave him permission to start Cycle 4 of oral chemotherapy and Accutane tonight. He'll take 200 mg of Temodar for the next seven nights, down from the 300 mg he took on the first three cycles. If his body handles this week well, he may be allowed to take 300 mg again in the future.
Before this morning's lab work, he revisited the pulmonologist for a stress test. (Betty drove him to appointments today; both Katie and Cooper had swim lessons this morning.) He was on a stationary bike for the test, and he said at times it felt like there were cinder blocks on his legs. His tiny little legs, stripped of their power by the steroids and lack of exercise, haven't had that big of a workout in months. His CT scan is Friday morning and pulmonary function test next week. We'll learn the results of all the tests after the function test.
Please pray this week that Steve's body handles the chemotherapy well and that we can continue to fight the Damm Spot with as much poison as possible!
Before this morning's lab work, he revisited the pulmonologist for a stress test. (Betty drove him to appointments today; both Katie and Cooper had swim lessons this morning.) He was on a stationary bike for the test, and he said at times it felt like there were cinder blocks on his legs. His tiny little legs, stripped of their power by the steroids and lack of exercise, haven't had that big of a workout in months. His CT scan is Friday morning and pulmonary function test next week. We'll learn the results of all the tests after the function test.
Please pray this week that Steve's body handles the chemotherapy well and that we can continue to fight the Damm Spot with as much poison as possible!
Thursday, July 17, 2008
Pulmonology report
At long last this afternoon, Steve had a visit with a pulmonologist. The referral took a while to receive, and then the appointment was slow in coming, but he finally got in.
Last night we completed 16 pages of new patient forms, answering questions about symptoms, medical conditions, medications, etc. On the first page of all the forms, we noted that Steve has a Grade IV glioblastoma in the pons, diagnosed in January 2008.
After the nurse checked for vitals and took some spirometry readings, we waited for Dr. L. He came in with Steve's already thick chart, filled with notes from his neuro-oncologist and the 16 pages of paperwork.
On that first page, we listed the reason for the visit: shortness of breath, wheezing, crackling, low blood oxygen levels, all beginning in February.
And then Dr. L asked, "Hmm. What was going on in February?"
We politely pointed to the brain cancer notes a few lines later on the page and silently wondered why some doctors don't read notes or charts before they walk in the exam room. (No offense to our medical friends who read the blog, who we are certain read charts in advance.)
We left the appointment with no answers but lots of possibilities. Steve will have three tests in the next couple of weeks: a stress test, a chest CT scan (last done during an ER visit in February) and pulmonary function test. And then he may have a barium swallow study and/or a sleep study to look for sleep apnea.
We learned that Steve has thrush in his throat again -- a really awful case of it. He'll try a new prescription this week. He'll also stop taking the steroid inhalers he's been on for a couple of months -- they can contribute to thrush and may not be necessary because of the Decadron he's also taking.
After the appointment, we picked up Cooper and Katie (being very well cared for at the DeGraffenreid-Fink home) and headed for the movies. Three of us watched Wall-E and one of us napped. Poor Katie is running a huge sleep deficit. Her new big-girl bed comes with new-found freedom, which she has been exercising late at night and early in the morning. She's also been wearing herself out at vacation Bible school every morning this week and missed her afternoon nap today. So she curled up on a theater seat, wrapped herself in her special blanket and dozed during the last half of the movie.
Last night we completed 16 pages of new patient forms, answering questions about symptoms, medical conditions, medications, etc. On the first page of all the forms, we noted that Steve has a Grade IV glioblastoma in the pons, diagnosed in January 2008.
After the nurse checked for vitals and took some spirometry readings, we waited for Dr. L. He came in with Steve's already thick chart, filled with notes from his neuro-oncologist and the 16 pages of paperwork.
On that first page, we listed the reason for the visit: shortness of breath, wheezing, crackling, low blood oxygen levels, all beginning in February.
And then Dr. L asked, "Hmm. What was going on in February?"
We politely pointed to the brain cancer notes a few lines later on the page and silently wondered why some doctors don't read notes or charts before they walk in the exam room. (No offense to our medical friends who read the blog, who we are certain read charts in advance.)
We left the appointment with no answers but lots of possibilities. Steve will have three tests in the next couple of weeks: a stress test, a chest CT scan (last done during an ER visit in February) and pulmonary function test. And then he may have a barium swallow study and/or a sleep study to look for sleep apnea.
We learned that Steve has thrush in his throat again -- a really awful case of it. He'll try a new prescription this week. He'll also stop taking the steroid inhalers he's been on for a couple of months -- they can contribute to thrush and may not be necessary because of the Decadron he's also taking.
After the appointment, we picked up Cooper and Katie (being very well cared for at the DeGraffenreid-Fink home) and headed for the movies. Three of us watched Wall-E and one of us napped. Poor Katie is running a huge sleep deficit. Her new big-girl bed comes with new-found freedom, which she has been exercising late at night and early in the morning. She's also been wearing herself out at vacation Bible school every morning this week and missed her afternoon nap today. So she curled up on a theater seat, wrapped herself in her special blanket and dozed during the last half of the movie.
Wednesday, July 16, 2008
Get your running shoes on!
Steve is a veteran of the Dallas White Rock Marathon. He won't be in shape to run this year's marathon, but he should be at the finish line to watch a growing team of friends and family members who will be running in his honor.
Liz Smith, one of our unheralded heroes (she's one of a devoted group who washes clothes and dishes, runs errands, drives, cooks meals, watches Katie and Cooper, talks to me whenever I call), has taken on another task for the Damm family. She is the team captain for Steve's team and is leading a group of us in training for the half marathon. (We'll run 13.1 miles that day instead of 26.2.)
She says that if Steve can endure six weeks of radiation therapy and months and months of chemotherapy, surely some of us can run 13.1 miles.
If you're interested in joining us in Dallas on Dec. 14, let Liz know at runforsteve@gmail.com.
You can run the half or the full marathon or even a five-person relay. Liz, also a veteran runner, can send you advice on training if you're new like me. (I've only run a 5K. This is a big leap for me!) She'll coordinate team shirts and other logistics. You can also send her team name suggestions or vote for her suggestion of "The Damm Spot Racers."
I hope to see you in Dallas in mid-December -- either on the course or at the finish line!
Liz Smith, one of our unheralded heroes (she's one of a devoted group who washes clothes and dishes, runs errands, drives, cooks meals, watches Katie and Cooper, talks to me whenever I call), has taken on another task for the Damm family. She is the team captain for Steve's team and is leading a group of us in training for the half marathon. (We'll run 13.1 miles that day instead of 26.2.)
She says that if Steve can endure six weeks of radiation therapy and months and months of chemotherapy, surely some of us can run 13.1 miles.
If you're interested in joining us in Dallas on Dec. 14, let Liz know at runforsteve@gmail.com.
You can run the half or the full marathon or even a five-person relay. Liz, also a veteran runner, can send you advice on training if you're new like me. (I've only run a 5K. This is a big leap for me!) She'll coordinate team shirts and other logistics. You can also send her team name suggestions or vote for her suggestion of "The Damm Spot Racers."
I hope to see you in Dallas in mid-December -- either on the course or at the finish line!
Trying 2 mg again
Steve stepped down to 2 mg of the steroid Decadron today. He's been at 3 mg for the past few weeks. We'll watch his symptoms at 2 and then try for 1!
His fatigue seems to be improving a bit each day. I'm looking forward to his pulmonology appointment tomorrow afternoon (easy for me, of course, as I'm not the patient). We're hoping to get some answers and treatment for his shortness of breath and low blood oxygen level.
His fatigue seems to be improving a bit each day. I'm looking forward to his pulmonology appointment tomorrow afternoon (easy for me, of course, as I'm not the patient). We're hoping to get some answers and treatment for his shortness of breath and low blood oxygen level.
Friday, July 11, 2008
Today's check-up
Steve's monthly appointment with his oncologist, Dr. M, was this morning. His lab results show that his white cells and neutrophils are still in good shape. (To get blood for today's test, the lab tech had to access a vein in his bicep. The veins in his hands and inside his elbows just aren't accessible.)
After a long discussion, we all agreed that Steve would delay his next cycle of chemotherapy by another week. His body could use the extra seven days to recover and get strong enough for the next round of toxins.
We also agreed that he'll drop the dose -- to what we're not yet sure. He's been taking 300 mg daily, which is double what he took during radiation therapy. Dr. M prefers a lower dose, but she went along with the opinion of our M.D. Anderson oncologist, who wanted to be very aggressive right away.
Dr. M is afraid that if Steve has another week of 300 mg of Temodar daily, there's a good chance his blood counts will drop again, making him again dangerously susceptible to infection, which would require hospitalization. We just can't take that risk.
My guess is that he'll start back on July 21 with 200 mg -- still a lot of chemotherapy to attack any mean ol' tumor cells roaming his brain.
She emphasized that Steve needs to rest often right now and lower his exposure to lots of germs. (So today he missed a birthday lunch with our nieces at Chuck E. Cheese.) She encouraged him to continue working but to cut back if he needs to -- to allow his body to strengthen.
We continue to be concerned about his blood oxygen level, which today measured between 91 and 93, down from the high 90s last week. He sounds so winded when he talks -- not a weak voice like earlier this year but breathy and winded. Dr. M thought she heard two small crackles in his chest and sent us to another UT-SW building for chest X-rays, just to be safe. He sees a pulmonologist next Thursday. We hope to get more answers then.
Recap:
1. Today's blood counts were good.
2. Chemo will wait another week and will be at a lower dose.
3. Steve needs to allow his body time to recover.
4. Pulmonology appointment is next week.
After a long discussion, we all agreed that Steve would delay his next cycle of chemotherapy by another week. His body could use the extra seven days to recover and get strong enough for the next round of toxins.
We also agreed that he'll drop the dose -- to what we're not yet sure. He's been taking 300 mg daily, which is double what he took during radiation therapy. Dr. M prefers a lower dose, but she went along with the opinion of our M.D. Anderson oncologist, who wanted to be very aggressive right away.
Dr. M is afraid that if Steve has another week of 300 mg of Temodar daily, there's a good chance his blood counts will drop again, making him again dangerously susceptible to infection, which would require hospitalization. We just can't take that risk.
My guess is that he'll start back on July 21 with 200 mg -- still a lot of chemotherapy to attack any mean ol' tumor cells roaming his brain.
She emphasized that Steve needs to rest often right now and lower his exposure to lots of germs. (So today he missed a birthday lunch with our nieces at Chuck E. Cheese.) She encouraged him to continue working but to cut back if he needs to -- to allow his body to strengthen.
We continue to be concerned about his blood oxygen level, which today measured between 91 and 93, down from the high 90s last week. He sounds so winded when he talks -- not a weak voice like earlier this year but breathy and winded. Dr. M thought she heard two small crackles in his chest and sent us to another UT-SW building for chest X-rays, just to be safe. He sees a pulmonologist next Thursday. We hope to get more answers then.
Recap:
1. Today's blood counts were good.
2. Chemo will wait another week and will be at a lower dose.
3. Steve needs to allow his body time to recover.
4. Pulmonology appointment is next week.
Wednesday, July 9, 2008
Much better numbers
Steve's counts are back! His white blood count is up to 20 (which is actually out of range on the high end), and his neutrophils are 5.2, which is in range.
With this news, he can stop taking the antibiotic and the neupogen injections.
Today he's been feeling much better in general -- definitely not 100% but improved over the past few days. He doesn't sound as breathy, and he doesn't look as labored when he moves.
We see Dr. M on Friday for another round of labs and a regularly scheduled visit.
Thanks for your prayers and good wishes!
With this news, he can stop taking the antibiotic and the neupogen injections.
Today he's been feeling much better in general -- definitely not 100% but improved over the past few days. He doesn't sound as breathy, and he doesn't look as labored when he moves.
We see Dr. M on Friday for another round of labs and a regularly scheduled visit.
Thanks for your prayers and good wishes!
Monday, July 7, 2008
Still hiding out
Steve's counts are a little better and a little worse. His white blood cell count is up to 2.0 today from 1.5 Thursday. His neutrophils are down even more, 0.6 today from 0.8 Friday and 1.0 Thursday. And that's with three days of neupogen injections, which are supposed to stimulate neutrophil production.
So, he needs to continue to stay away from people in general to avoid germs. He'll have repeat labs on Wednesday. And he can't start chemotheraphy and Accutane tonight as planned.
He's also easily winded. Any activity -- walking from one room to another, taking a shower, mildly interacting with Katie and Cooper -- wears him out and makes him short of breath. If he develops a cough or is short of breath when just resting, we are to page Dr. M right away.
So, he needs to continue to stay away from people in general to avoid germs. He'll have repeat labs on Wednesday. And he can't start chemotheraphy and Accutane tonight as planned.
He's also easily winded. Any activity -- walking from one room to another, taking a shower, mildly interacting with Katie and Cooper -- wears him out and makes him short of breath. If he develops a cough or is short of breath when just resting, we are to page Dr. M right away.
Sunday, July 6, 2008
Worn out
We don't yet know if Steve's neutrophils are multiplying. We'll go in for blood work tomorrow for those results and then will wait to hear from Dr. M if he can go forward with chemotherapy tomorrow night.
He is exhausted, sleeping as much as he can and resting the rest of the time. He gets winded easily. Just taking a shower seemed to take a lot out of him.
I'll update tomorrow when we know more from labs. Thanks for checking on Steve!
He is exhausted, sleeping as much as he can and resting the rest of the time. He gets winded easily. Just taking a shower seemed to take a lot out of him.
I'll update tomorrow when we know more from labs. Thanks for checking on Steve!
Friday, July 4, 2008
Working on new white blood cells
Steve's neutrophil number was 0.8 this morning, down from 1.0 yesterday. He had blood drawn at Presby Plano's lab. Dr. M consulted by phone and sent us to the ER, where Steve eventually received his first injection to help regenerate white blood cells.
Tomorrow we'll pick up more vials of the neupogen, which he'll inject daily for an undetermined amount of time. (Actually, we're lucky enough to live across the street from a great RN and home health care nurse, and she's going to inject him. Thanks, Tisa!)
The neupogen doesn't replace the cells -- it encourages his body to make more. He'll have more blood drawn Monday to see how the medicine is working.
He's been advised to stay away from large groups of people (no church, no stores, no restaurants), work and anyone sick until his numbers look better. His immune system just isn't working. The ER doctor said he's like a bubble boy.
Steve isn't fond of emergency rooms and is tired of spending major holidays in hospitals -- Christmas Day, New Year's Eve and now July Fourth. We're hoping to spend Labor Day, Thanksgiving and Christmas this year far from needles and tests and uncomfortable lobby chairs and uncomfortable examination tables.
Tomorrow we'll pick up more vials of the neupogen, which he'll inject daily for an undetermined amount of time. (Actually, we're lucky enough to live across the street from a great RN and home health care nurse, and she's going to inject him. Thanks, Tisa!)
The neupogen doesn't replace the cells -- it encourages his body to make more. He'll have more blood drawn Monday to see how the medicine is working.
He's been advised to stay away from large groups of people (no church, no stores, no restaurants), work and anyone sick until his numbers look better. His immune system just isn't working. The ER doctor said he's like a bubble boy.
Steve isn't fond of emergency rooms and is tired of spending major holidays in hospitals -- Christmas Day, New Year's Eve and now July Fourth. We're hoping to spend Labor Day, Thanksgiving and Christmas this year far from needles and tests and uncomfortable lobby chairs and uncomfortable examination tables.
Thursday, July 3, 2008
Low counts
Steve's blood work today revealed a possible reason for his fatigue and general feeling of lousiness.
His white blood cell count and absolute neutrophils are extremely low. The white count is 1.5, with a normal range of 4.0-10.5. the neutrophil count is 1.0, with a normal range of 1.8-7.8.
This isn't a huge surprise -- low counts are common for patients on long-term chemotherapy. (White cells in general fight infection -- bacterial, viral and fungal. Neutrophils help fight bacterial infection specifically. If your body is low on neutrophils, you are at a much greater risk of bacterial infection.)
Steve's oncologist has given us the following directions:
1. He's started another course of antibiotics as a precaution.
2. He needs to take it easy all weekend.
3. Tomorrow morning we'll go to Plano Presby for lab work and wait there for results. If his neutrophil count is lower tomorrow than today then he'll go to the ER and get a neutrophil injection.
4. If the counts are not better by Monday, he'll have to delay the next round of chemotheraphy, which is supposed to begin Monday.
In addition to his fatigue, he's been more short of breath than normal -- and normal these days isn't great. His pulmonology appointment isn't until July 17. We had hoped that he would gradually progress or at least stay the same until then.
Our biggest weekend plans are to celebrate Cooper's 7th birthday, which is today, tomorrow. He requested a Fourth of July celebration with Grandma, Papa and Uncle Jim. Steve can just lie on the sofa at the Dallas Damm house all afternoon.
His white blood cell count and absolute neutrophils are extremely low. The white count is 1.5, with a normal range of 4.0-10.5. the neutrophil count is 1.0, with a normal range of 1.8-7.8.
This isn't a huge surprise -- low counts are common for patients on long-term chemotherapy. (White cells in general fight infection -- bacterial, viral and fungal. Neutrophils help fight bacterial infection specifically. If your body is low on neutrophils, you are at a much greater risk of bacterial infection.)
Steve's oncologist has given us the following directions:
1. He's started another course of antibiotics as a precaution.
2. He needs to take it easy all weekend.
3. Tomorrow morning we'll go to Plano Presby for lab work and wait there for results. If his neutrophil count is lower tomorrow than today then he'll go to the ER and get a neutrophil injection.
4. If the counts are not better by Monday, he'll have to delay the next round of chemotheraphy, which is supposed to begin Monday.
In addition to his fatigue, he's been more short of breath than normal -- and normal these days isn't great. His pulmonology appointment isn't until July 17. We had hoped that he would gradually progress or at least stay the same until then.
Our biggest weekend plans are to celebrate Cooper's 7th birthday, which is today, tomorrow. He requested a Fourth of July celebration with Grandma, Papa and Uncle Jim. Steve can just lie on the sofa at the Dallas Damm house all afternoon.
Rough week
Steve is still struggling with exhaustion, especially in the mornings. He's adapting as he can -- today he worked from home in the morning to let him rev up slowly, and we drove him to work around 10:30. Please keep him in your prayers.
Tuesday, July 1, 2008
Another week, another Decadron drop
Steve is determined to get off the steroid. Last week was 3 mg. Yesterday he took 2 mg. He tried for 2 again today, but after two full days of work, he was extra worn out and wobbly, so he took an extra milligram late this afternoon. Then he retired for a two-hour nap.
I'm lobbying for 3 mg one day, 2 the next for at least a week. Of course, when Steve gets extra tired, I get extra protective. He's been having headaches again for the first time in several weeks. Sunday morning he felt lousy and slept most of the morning.
This is a busy time of year for us. Katie turned 3 on June 20. Tomorrow is our 14th wedding anniversary. Thursday is Cooper's 7th birthday, followed by July 4th. So many reasons to celebrate! (If you've got some time to spare, you can read more about our past 14 years by clicking here.)
I'm lobbying for 3 mg one day, 2 the next for at least a week. Of course, when Steve gets extra tired, I get extra protective. He's been having headaches again for the first time in several weeks. Sunday morning he felt lousy and slept most of the morning.
This is a busy time of year for us. Katie turned 3 on June 20. Tomorrow is our 14th wedding anniversary. Thursday is Cooper's 7th birthday, followed by July 4th. So many reasons to celebrate! (If you've got some time to spare, you can read more about our past 14 years by clicking here.)
Friday, June 27, 2008
Disneyland, Day 3
We had early entry privileges again Sunday, but we didn't need to be first in line this day. We mostly wanted to ride our favorite rides again and hit a few new ones.
We spent the first part of morning at Disneyland, riding Alice in Wonderland, the teacups, Space Mountain (just me and Cooper), Buzz Lightyear, Star Tours (just me and Coop), Astro Orbitor and the Haunted Mansion. We were among very few families for the first show at the Enchanted Tiki Tiki Room. The animatronic birds' songs have played off and on in my head since my first Disneyland trip in 1986. Now both Cooper and Katie sing them from time to time.
We said goodbye to Disneyland and headed to California Adventure. We caught the first show of Turtle Talk with Crush then headed to Paradise Pier for the Golden Zephyr, Mulholland Madness, Jumpin' Jellyfish and Sun Wheel, a giant Ferris wheel that affords beautiful views, albeit through a cage that obscures attempts at photographing the scenery.
And then our tour was over. We returned to our beautiful hotel lobby, turned in the rented scooter and waited for our car. Katie fell asleep on the drive to Ontario and slept almost the entire time while we picked up boarding passes, checked luggage, went through security and waited at the gate. She did not sleep when we were taking off. She did cry and sometimes scream for about 10 minutes. I had visions of appearing on cable news channels as the family with the unruly 2-year-old who gets kicked off the plane. Of course, she had reason to be fussy. She hadn't eaten much in three days and was still struggling with a stomach bug. Our flight attendant was the most sympathetic we've encountered in almost seven years of flying with children. She let me unbuckle Katie from her car seat, and I was able to hold her until she settled.
The rest of the flight was uneventful, though late. We landed, picked up luggage, took a bus to our car, drove to Love Field to pick up Aunt Ami and pulled into the garage by 11:30 p.m.
We loved our getaway, and we've been talking and reminiscing about it ever since. In fact, Katie told us tonight that she's going to keep growing big so she can ride Space Mountain.
More photos from the day are here.
We spent the first part of morning at Disneyland, riding Alice in Wonderland, the teacups, Space Mountain (just me and Cooper), Buzz Lightyear, Star Tours (just me and Coop), Astro Orbitor and the Haunted Mansion. We were among very few families for the first show at the Enchanted Tiki Tiki Room. The animatronic birds' songs have played off and on in my head since my first Disneyland trip in 1986. Now both Cooper and Katie sing them from time to time.
We said goodbye to Disneyland and headed to California Adventure. We caught the first show of Turtle Talk with Crush then headed to Paradise Pier for the Golden Zephyr, Mulholland Madness, Jumpin' Jellyfish and Sun Wheel, a giant Ferris wheel that affords beautiful views, albeit through a cage that obscures attempts at photographing the scenery.
And then our tour was over. We returned to our beautiful hotel lobby, turned in the rented scooter and waited for our car. Katie fell asleep on the drive to Ontario and slept almost the entire time while we picked up boarding passes, checked luggage, went through security and waited at the gate. She did not sleep when we were taking off. She did cry and sometimes scream for about 10 minutes. I had visions of appearing on cable news channels as the family with the unruly 2-year-old who gets kicked off the plane. Of course, she had reason to be fussy. She hadn't eaten much in three days and was still struggling with a stomach bug. Our flight attendant was the most sympathetic we've encountered in almost seven years of flying with children. She let me unbuckle Katie from her car seat, and I was able to hold her until she settled.
The rest of the flight was uneventful, though late. We landed, picked up luggage, took a bus to our car, drove to Love Field to pick up Aunt Ami and pulled into the garage by 11:30 p.m.
We loved our getaway, and we've been talking and reminiscing about it ever since. In fact, Katie told us tonight that she's going to keep growing big so she can ride Space Mountain.
More photos from the day are here.
Tuesday, June 24, 2008
Down to 3 mg
Steve continues his march down off Decadron. Yesterday he dropped from 4 mg daily to 3 mg. For the first time in this round of stepping down, we notice the difference. He is slightly wobbly. His voice is somewhat weaker, with a hint of slurred speech returning. We're not alarmed, though -- it's just part of the balance in his healing process. (I am no expert, but I have become much more aware, with growing appreciation daily, of the importance of balance in just about everything.)
I'm including this fun photo, from March 2007, because:
1. It makes me laugh. We were enjoying our last day of vacation during spring break, playing at the children's museum in Lakeland, Fla. Steve was showing off his juggling skills to me, Cooper and Katie. We loved it!
2. I can't wait to see Steve juggle again.
3. I'm convinced that this was near the beginning of the Damm Spot. About two weeks before this photo was taken, Steve had a high fever followed by sudden onset of Bell's Palsy. The facial paralysis mostly resolved in about a month, and no MRI was ordered, which is normal, standard care. I think that was the signal of trouble in his brain. There's nothing we could have done even if we could have known, but I can't help but think about the timing. (All of Steve's current doctors are aware of the timeline, and they've all expressed interest, but no one has declared a connection.)
Saturday, June 21, 2008
A note of thanks (written by Steve)
Dear friends,
I'll apologize up front: I'm not a writer.
It is hard to believe that six months have passed since my first MRI indicating a one-half inch lesion in my brainstem. Test, hospitalizations, scans, a biopsy and a couple of extra holes in my skull later confirmed the preliminary diagnosis: a rapidly-growing grade four gioblastoma in my pons. Y'all know all that.
Since then it has been quite a journey. How coincidental, then, that on June, 11th, exactly six months after my first MRI, we received the amazing news that my scans indicate that the tumor, the "Damm Spot," is dead! It took (and is still taking) time for all this to sink in. I'm not out of the woods yet, though. While the scans don't show any "hot spots" or tumor activity, back when "Spot" was still viable it was constantly shedding those nasty little cancer cells that are now swimming around my brain. My current chemotherapy and pharmaceutical treatment plan will be targeting these little monsters and hopefully kill them off before they dig in and grow into new tumors. We've been told that it is not a question of if, but when, the tumors come back. We'll cross that bridge when we come to it. If you've read the blog, you know this, too.
I couldn't have possibly imagined the amazing outpouring of love, prayers, support and selflessness that have surrounded our family during this journey. I have felt overwhelmed by it all at times. I only wish that I had some way of letting each of you know how you have helped me and my family through all this craziness. It has been so much easier to remain positive when you are surrounded by the love we as have. We have been and are continue to be truly blessed.
Some of the medications I'm taking, while they help me move around and allow me to function, also thin my skin and cause me to bruise easily. Any cuts I get take a long time to heal. To protect me, Tyra has told me she wants to cover me in bubble wrap. You have been the bubble wrap for my family.
I wish you all peace and love.
Out Damm Spot!
Steve
I'll apologize up front: I'm not a writer.
It is hard to believe that six months have passed since my first MRI indicating a one-half inch lesion in my brainstem. Test, hospitalizations, scans, a biopsy and a couple of extra holes in my skull later confirmed the preliminary diagnosis: a rapidly-growing grade four gioblastoma in my pons. Y'all know all that.
Since then it has been quite a journey. How coincidental, then, that on June, 11th, exactly six months after my first MRI, we received the amazing news that my scans indicate that the tumor, the "Damm Spot," is dead! It took (and is still taking) time for all this to sink in. I'm not out of the woods yet, though. While the scans don't show any "hot spots" or tumor activity, back when "Spot" was still viable it was constantly shedding those nasty little cancer cells that are now swimming around my brain. My current chemotherapy and pharmaceutical treatment plan will be targeting these little monsters and hopefully kill them off before they dig in and grow into new tumors. We've been told that it is not a question of if, but when, the tumors come back. We'll cross that bridge when we come to it. If you've read the blog, you know this, too.
I couldn't have possibly imagined the amazing outpouring of love, prayers, support and selflessness that have surrounded our family during this journey. I have felt overwhelmed by it all at times. I only wish that I had some way of letting each of you know how you have helped me and my family through all this craziness. It has been so much easier to remain positive when you are surrounded by the love we as have. We have been and are continue to be truly blessed.
Some of the medications I'm taking, while they help me move around and allow me to function, also thin my skin and cause me to bruise easily. Any cuts I get take a long time to heal. To protect me, Tyra has told me she wants to cover me in bubble wrap. You have been the bubble wrap for my family.
I wish you all peace and love.
Out Damm Spot!
Steve
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