Steve is about to leave for his sleep study. He'll spend the night being observed in a lab at a nearby hospital. His pulmonologist is looking for why his blood oxygen level remains low. One possibility is sleep apnea, which can be diagnosed after a sleep study.
Good friend and neighbor Andy is driving him, and Jim and Betty will pick him up at 6 a.m., saving me from waking the kids up, piling them in the minivan and driving them in the dark.
We'll get the results from the study at the next pulmonology appointment, scheduled for Sept. 9.
If all goes well this week, we won't have a single medical appointment between Sept. 1 and Sept. 9 -- the longest stretch since all this began!
By the way, if you also read The Damm Spot, our "happy" family blog, you will notice a change. I've made the site password protected. If you would like access to that site, please e-mail me, and I'll add you to the permissions list.
Saturday, August 30, 2008
Monday, August 25, 2008
Getting stronger
Steve has been riding a stationary bike a few days each week to start regaining cardiovascular and muscular strength. He showed off his improved strength and endurance twice in the past few days.
On Friday night the four of us walked to and from Cooper's school for meet-the-teacher night. The total distance is about two-thirds of mile.
This morning we all walked Coop to school again for the first day of second grade.
Steve was just a little bit wobbly, but he kept a steady pace and did really well. It's the most physical activity he's had in a long while. Go, Steve, go!
On Friday night the four of us walked to and from Cooper's school for meet-the-teacher night. The total distance is about two-thirds of mile.
This morning we all walked Coop to school again for the first day of second grade.
Steve was just a little bit wobbly, but he kept a steady pace and did really well. It's the most physical activity he's had in a long while. Go, Steve, go!
Wednesday, August 20, 2008
Stable
Today's MRI is identical to the one taken in June. That means there is no regrowth and no new visible tumor activity. Isn't that awesome?! We will continue to pray that the mass will shrink to provide more relief of his neurological symptoms.
We spent much more time than expected at the cancer center to get the good news. The MRI was at noon. We were scheduled to see Dr. M at 2:30 p.m. but didn't actually see her until 4:30. Thankfully we both had books to read and enjoy each other's company! (Cooper and Katie spent the afternoon with Grandma.)
In addition to the MRI news, we learned:
1. Steve can start Cycle 5 of chemotherapy next Monday. He'll remain at 200 mg of Temodar (down from 300 mg) and will continue taking Accutane.
2. He can try to drink liquids without thickener. He still has no gag reflex, but Dr. M and her staff agree that if he's careful and sits up straight while drinking, he should be able to avoid aspiration. If he starts coughing while drinking, he'll return to the thickener and straw. Tonight he drank regular ol' ice water out of a glass for the first time since January. "It was highly exciting," Steve reports.
3. Dr. M wants him to try to go back to 2 mg of steroid daily. He's been at 3 mg for a couple of weeks after a failed attempt at 1.5 and then 2.
4. He's going to add a multivitamin daily with the hopes of increasing calcium (for weakening bones) and Vitamins C and E (to stave off cataract growth).
Thank you for continuing to check on Steve, for praying for him and sending us good thoughts!
We spent much more time than expected at the cancer center to get the good news. The MRI was at noon. We were scheduled to see Dr. M at 2:30 p.m. but didn't actually see her until 4:30. Thankfully we both had books to read and enjoy each other's company! (Cooper and Katie spent the afternoon with Grandma.)
In addition to the MRI news, we learned:
1. Steve can start Cycle 5 of chemotherapy next Monday. He'll remain at 200 mg of Temodar (down from 300 mg) and will continue taking Accutane.
2. He can try to drink liquids without thickener. He still has no gag reflex, but Dr. M and her staff agree that if he's careful and sits up straight while drinking, he should be able to avoid aspiration. If he starts coughing while drinking, he'll return to the thickener and straw. Tonight he drank regular ol' ice water out of a glass for the first time since January. "It was highly exciting," Steve reports.
3. Dr. M wants him to try to go back to 2 mg of steroid daily. He's been at 3 mg for a couple of weeks after a failed attempt at 1.5 and then 2.
4. He's going to add a multivitamin daily with the hopes of increasing calcium (for weakening bones) and Vitamins C and E (to stave off cataract growth).
Thank you for continuing to check on Steve, for praying for him and sending us good thoughts!
Tuesday, August 19, 2008
MRI on Wednesday
Steve's MRI is Wednesday at UT-SW. After the imaging, he'll have blood drawn, then we'll meet with Dr. M to get results.
No matter how much I try to avoid worry, I can't help but be nervous before these scans. I just remind myself that we don't have any reason to believe there is any growth or new tumor activity. Steve is doing well -- his energy level is good, he's relatively stable when walking (even with his distorted prism vision), his headaches have disappeared again. And he's not nervous at all about tomorrow's appointment.
No matter how much I try to avoid worry, I can't help but be nervous before these scans. I just remind myself that we don't have any reason to believe there is any growth or new tumor activity. Steve is doing well -- his energy level is good, he's relatively stable when walking (even with his distorted prism vision), his headaches have disappeared again. And he's not nervous at all about tomorrow's appointment.
Sunday, August 17, 2008
Guest blogger Liz: Run for Steve update
Hi, everybody -- just checking in ahead of the race for Steve. There are only four months remaining for those of us planning to run. With the weather hopefully cooling off, it's time to talk about training.
The first thing to decide is which race you will run. There is a full marathon (26.2 miles), a half marathon (13.1), and a relay, which would be 26.2 miles divided among five runners. We are building at least one relay team, so if you're interested in joining please e-mail runforsteve@gmail.com.
If you're running the full or half marathon be sure to register as quickly as possible because this event WILL sell out.
Now for a little housekeeping:
1. We are still trying to come up with a name for our team. Please e-mail your ideas. Steve will be choosing his favorite. Once a name has been determined, we will order team shirts.
2. In order to place the order for team shirts, we need to have an idea about how many shirts need to be ordered. If you are planning to run, please send an e-mail with your name and size. We will let you know how much each shirt will cost.
While you're training, be sure to stretch, drink plenty of water and increase your mileage gradually. If you would like to read more about training you can visit:
Be strong, be safe,
Liz
Saturday, August 16, 2008
Wednesday, August 13, 2008
Eyes
Steve, Katie and I spent three and a half hours in the opthamology clinic at UT-Southwestern this afternoon. (Cooper hopped on a jet plane with Grandma and Papa this morning for a week in New England.) Here is what we know.
Cause of double vision
We've actually known this, but it's good to review. Steve's double vision is caused by a problem with his sixth cranial nerve. This nerve starts in the brain stem, where the Damm Spot lives. The nerve has been damaged by the Damm Spot and/or related swelling. The sixth cranial nerve's only job is to control the eye's ability to move back and forth. It's not working well on Steve's right eye. So, his left eye can move side to side in a normal fashion. But his right doesn't track the same. So he sees two of everything. He doesn't wear a patch over the right eye. He just tries to focus on the image he sees through the left eye and tries to ignore the right.
Cause of double vision
We've actually known this, but it's good to review. Steve's double vision is caused by a problem with his sixth cranial nerve. This nerve starts in the brain stem, where the Damm Spot lives. The nerve has been damaged by the Damm Spot and/or related swelling. The sixth cranial nerve's only job is to control the eye's ability to move back and forth. It's not working well on Steve's right eye. So, his left eye can move side to side in a normal fashion. But his right doesn't track the same. So he sees two of everything. He doesn't wear a patch over the right eye. He just tries to focus on the image he sees through the left eye and tries to ignore the right.
How to fix double vision
You can try to help the "bad" eye with prisms. You can also have surgery. Surgery is not an option right now. There is too much other work going on in his brain, most importantly chemotherapy every other week until sometime next year.
Seeing single
For the next two weeks, Steve is wearing a prism that was cut to fit his current spectacles. It's a special piece of plastic that snaps into place behind the lens for his right eye. From far away, the prism makes that side of his glasses look foggy. When you are close up, you can more clearly see prism patterns cut into the plastic.
With the help of the prism, for the first time since January, Steve is able to see one image straight in front of him. The image is distorted, though, and images to the far right are double. Still, he was so excited on the drive home to see just one of everything right in front of us.
Next step
Dr. Mc, the opthamologist, doesn't think prisms are an ideal solution for Steve. On our follow-up visit in two weeks, he expects Steve to tell him how awful they are.
Surgery is the better option, he says. Even when it's possible one day in Steve's case, it won't be a perfect solution. Right now, according to Dr. Mc's office, there is nothing that can completely restore Steve's sight to single vision as it was before January.
But wait! There's more: Cataracts
We can add yet another reason why we're anxious for Steve to get off Decadron. Long-term use of the steroid can cause cataracts, and Steve has the beginning stages of cataracts -- a cloudy film -- on both eyes.
Sweet girl
We weren't prepared for how long today's appointment would last. Had we known we would be there for three and a half hours, we would have found someone to take care of Katie for the afternoon. She rarely accompanies us on doctor appointments -- playing with friends is much more fun for everyone involved. Still, she was very well behaved, cuddling, singing quietly and eating lots of snacks provided by the clinic.
Friday, August 8, 2008
Daddy-daughter challenge
Katie had a rough night last night. She took hours to fall asleep and woke up multiple times. She was fussy this morning and glassy-eyed. She woke from her afternoon nap with a 100.7 fever.
Our awesome pediatric office was able to see us at 4:40 p.m. on a Friday. By 4:55, we had a diagnosis -- a cold. Like anyone with a cold, she's highly contagious right now, which means we have to keep her away from Steve as much as possible and be careful of what she touches and then he touches. We don't know how susceptible he is right now to germs, but there's no reason to test it. Katie's doctor says one of the current virus strains is often turning into croup and laryngitis.
When I put Katie to bed tonight, she cried, "But I want to give Daddy a hug and a kiss." Blowing him a kiss across the family room wasn't sufficient.
Steve and Katie, November 2007, Log Cabin Village
Thursday, August 7, 2008
Super daddy and uncle
Here is Steve, reading to Katie, Cooper, Brooke and Molli, all squished in a twin bed, after he worked all day, went with us to the pool and helped them all get ready for bed -- and just a couple of hours before he takes another dose of chemotherapy. Wednesday, August 6, 2008
"Pray it gets a little smaller"
Steve's appointment with his radiation oncologist, Dr. A, went about as we expected. Dr. A reviewed the most recent MRI (from June), checked Steve's vitals and responses and chatted for a while.
Like everyone else, he's eager for Steve to get off Decadron but also recognizes that he has to have it right now. (Steve is still on 3 mg and isn't sure he's ready to drop down to 2 mg tomorrow. He says his left side is about 80 percent back.) Dr. A told us that another risk with long-term steroid use is weakened bones. So now I'm evaluating Steve's daily calcium intake to see if he's good or needs more. My goal is find a food or foods that fill the calcium need as well as other nutritional needs. Steve doesn't have a huge appetite these days, so we need foods that serve multiple purposes. His daily morning smoothies are great opportunities for sneaking in added nutrition.
Regarding the tumor, Dr. A says that we need to "pray it gets a little smaller," which would lessen Steve's neurological symptoms and allow him to stop taking Decadron. Little reductions to the Damm Spot can have a big impact.
Dr. A also checked Steve's gag reflex. He still doesn't have one. So he'll continue to thicken all liquids and drink through a straw.
His blood oxygen level is stubborn and was 94 percent yesterday. Steve has one more test related to investigating the cause -- a sleep study scheduled at the end of this month. We've not heard results from last week's echocardiogram, which we take as good news. We'll receive a final report after the sleep study.
The home front is busy. Our nieces are spending the week with us for some good cousin fun. Cooper and Brooke are attending Fine Arts Week at our church in the mornings. Katie and Molli spend the mornings in the water, building Lego towers and running around with me. Betty helped me with a sudden beetle infestation of our burr oak tree. (Diagnosis: harmless.) Rae has been driving for us often. Uncle Greg watched all four kids while we were at appointments yesterday. There's not much relaxing this summer, but we're enjoying our time with family and friends.
Like everyone else, he's eager for Steve to get off Decadron but also recognizes that he has to have it right now. (Steve is still on 3 mg and isn't sure he's ready to drop down to 2 mg tomorrow. He says his left side is about 80 percent back.) Dr. A told us that another risk with long-term steroid use is weakened bones. So now I'm evaluating Steve's daily calcium intake to see if he's good or needs more. My goal is find a food or foods that fill the calcium need as well as other nutritional needs. Steve doesn't have a huge appetite these days, so we need foods that serve multiple purposes. His daily morning smoothies are great opportunities for sneaking in added nutrition.
Regarding the tumor, Dr. A says that we need to "pray it gets a little smaller," which would lessen Steve's neurological symptoms and allow him to stop taking Decadron. Little reductions to the Damm Spot can have a big impact.
Dr. A also checked Steve's gag reflex. He still doesn't have one. So he'll continue to thicken all liquids and drink through a straw.
His blood oxygen level is stubborn and was 94 percent yesterday. Steve has one more test related to investigating the cause -- a sleep study scheduled at the end of this month. We've not heard results from last week's echocardiogram, which we take as good news. We'll receive a final report after the sleep study.
The home front is busy. Our nieces are spending the week with us for some good cousin fun. Cooper and Brooke are attending Fine Arts Week at our church in the mornings. Katie and Molli spend the mornings in the water, building Lego towers and running around with me. Betty helped me with a sudden beetle infestation of our burr oak tree. (Diagnosis: harmless.) Rae has been driving for us often. Uncle Greg watched all four kids while we were at appointments yesterday. There's not much relaxing this summer, but we're enjoying our time with family and friends.
Monday, August 4, 2008
Green light for chemo (we think)
We're not having the best of luck with blood draws. Today's order wasn't placed as "stat," apparently, so we didn't get Steve's counts until late tonight. (He was able to log in from home to find them.) Though some counts are high and some are low, none are at alert level, so he's assuming he can start taking chemotherapy again tonight. Dr. M will let us know tomorrow if there's trouble. But we're expecting another week of poisoning the Damm Spot and any of its awful spin-off cells!
At Dr. M's direction, Steve today stepped up the Decadron to 3 mg to help with his left-side weakness. Already his left side seems more responsive (for the past week or so it feels as if his left arm and hand are filled with sand, and he's been more wobbly than normal). He's going to stay at 3 mg for three days and then try to drop off again.
Tomorrow Steve sees Dr. A, the radiation oncologist who we've grown to admire, despite his sometimes awkward manner. This is just a follow-up -- we're not expecting any big news from the visit. But there may be a memorable quote or two to share!
At Dr. M's direction, Steve today stepped up the Decadron to 3 mg to help with his left-side weakness. Already his left side seems more responsive (for the past week or so it feels as if his left arm and hand are filled with sand, and he's been more wobbly than normal). He's going to stay at 3 mg for three days and then try to drop off again.
Tomorrow Steve sees Dr. A, the radiation oncologist who we've grown to admire, despite his sometimes awkward manner. This is just a follow-up -- we're not expecting any big news from the visit. But there may be a memorable quote or two to share!
Thursday, July 31, 2008
Our village
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.
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.
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!
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