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!
Wednesday, July 16, 2008
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
Disneyland, Day 2
Thank goodness for the two-hour time difference between Texas and California. We had no trouble waking up in time to get ready for early entry on Saturday, our second day at Disneyland.
One of the newest rides at both parks is Finding Nemo Submarine Voyage, which took the place of the old sub rides. The wait is notoriously long, as the ride allows just 900 or so guests through an hour, and the ride lasts 13 minutes. To ride without spending hours in line, you need to be among the first in line. So, we were the actual first people in line for the whole day.
While we were waiting at the gate, a cast member asked the family next to us if they would open the park. Of course, they said yes. Cooper, who is the boldest member of our family of four, asked what they were doing and then asked if we could join, too. The family was nice enough to share their honor, and the cast member agreed.
The eight of us entered before anyone else and led the countdown from 10 to 1. Then we screamed, "Let the magic begin!" What an exciting way to start the day.
We rushed to Tomorrowland and grabbed the first Nemo sub. Honestly, it was a good ride but I'm glad we didn't wait in the heat for it -- it wasn't that spectacular.
That morning we also rode (sometimes with Steve):
Mad Tea Party
King Arthur Carrousel
Jungle Cruise
Pirates of the Caribbean
Tarzan's Treehouse
Indiana Jones Adventure (just me and Cooper -- it was his favorite ride of the weekend)
Then we ate breakfast at the Plaza Inn. This was the long awaited breakfast with Minnie and friends. If you ask Katie how breakfast with Minnie was, she'll tell you, "Well, she didn't eat with me. She just loved on me." I hadn't explained in advance that the characters wouldn't sit down and dine with us, an important detail when you're 2. Nevertheless, we all enjoyed the meal and hugs.
After breakfast we went to the Golden Horseshoe to enjoy Billy Hill and the Hillbillies, an amusing country music/fiddling/comedy show.
Our next stop was California Adventure. Katie loved Monsters Inc. from the day before and wanted to show Daddy. We also fit in the Muppet Vision 3-D movie, fun at a Bug's Land and Soarin' Over California. Cooper and I braved the Grizzly River Run and got soaked -- perfect timing before heading back to our hotel.
After naps all around, we went swimming in the hotel pools, enjoyed a special dinner at Catal in Downtown Disney and settled in for an entertaining story time at the hotel. It didn't take long for Steve and the kids to fall asleep, and I ventured back out to the parks for souvenir shopping.
More photos from our fun day are here.
One of the newest rides at both parks is Finding Nemo Submarine Voyage, which took the place of the old sub rides. The wait is notoriously long, as the ride allows just 900 or so guests through an hour, and the ride lasts 13 minutes. To ride without spending hours in line, you need to be among the first in line. So, we were the actual first people in line for the whole day.
While we were waiting at the gate, a cast member asked the family next to us if they would open the park. Of course, they said yes. Cooper, who is the boldest member of our family of four, asked what they were doing and then asked if we could join, too. The family was nice enough to share their honor, and the cast member agreed.
The eight of us entered before anyone else and led the countdown from 10 to 1. Then we screamed, "Let the magic begin!" What an exciting way to start the day.
We rushed to Tomorrowland and grabbed the first Nemo sub. Honestly, it was a good ride but I'm glad we didn't wait in the heat for it -- it wasn't that spectacular.
That morning we also rode (sometimes with Steve):Mad Tea Party
King Arthur Carrousel
Jungle Cruise
Pirates of the Caribbean
Tarzan's Treehouse
Indiana Jones Adventure (just me and Cooper -- it was his favorite ride of the weekend)
Then we ate breakfast at the Plaza Inn. This was the long awaited breakfast with Minnie and friends. If you ask Katie how breakfast with Minnie was, she'll tell you, "Well, she didn't eat with me. She just loved on me." I hadn't explained in advance that the characters wouldn't sit down and dine with us, an important detail when you're 2. Nevertheless, we all enjoyed the meal and hugs.
After breakfast we went to the Golden Horseshoe to enjoy Billy Hill and the Hillbillies, an amusing country music/fiddling/comedy show.
Our next stop was California Adventure. Katie loved Monsters Inc. from the day before and wanted to show Daddy. We also fit in the Muppet Vision 3-D movie, fun at a Bug's Land and Soarin' Over California. Cooper and I braved the Grizzly River Run and got soaked -- perfect timing before heading back to our hotel.
After naps all around, we went swimming in the hotel pools, enjoyed a special dinner at Catal in Downtown Disney and settled in for an entertaining story time at the hotel. It didn't take long for Steve and the kids to fall asleep, and I ventured back out to the parks for souvenir shopping.
More photos from our fun day are here.
Thursday, June 19, 2008
Steroid update
Steve has successfully stepped down from 6 mg to 5 mg and now to 4 mg of Decadron in less than two weeks.
In the past when he's dropped from 6 to a lower dose of the steroid, we notice symptoms right away. But this time his speech and voice are stable (weakened but no more so than two weeks ago), he has retained function of his left side and he's not wobbly when he walks.
If this welcome stability and strength continues, he'll hit 3 mg on Monday.
In the past when he's dropped from 6 to a lower dose of the steroid, we notice symptoms right away. But this time his speech and voice are stable (weakened but no more so than two weeks ago), he has retained function of his left side and he's not wobbly when he walks.
If this welcome stability and strength continues, he'll hit 3 mg on Monday.
Tuesday, June 17, 2008
Disneyland, Day 1
With two and a half days at the two parks, we had time to spread out the rides and shows. I used a Disney trip-planning software program and a book I've had good luck with before to plot out the best order for the rides. The trick at any Disney park is to reduce the amount of time you spend waiting in line, usually achieved by being at the gate well before the park opens and being willing to use the afternoons for shows and/or naps.
In the morning, we fit in (Steve sometimes watched from the sidelines):
Peter Pan's Flight
Dumbo
Matterhorn Bobsleds (Katie's first real roller coaster, which she declared "awesome")
Many Adventures of Winnie the Pooh
Chip 'n' Dale's Treehouse
Buzz Lightyear Astro Blasters
Then we headed to Disney's California Adventure, the adjacent park. We watched the stage show Aladdin, then Steve rolled off to the hotel for a nap. The kids and I braved Monsters Inc. Then Katie fell asleep in her stroller.
For the day's photos, click here.
In the morning, we fit in (Steve sometimes watched from the sidelines):
Peter Pan's Flight
Dumbo
Matterhorn Bobsleds (Katie's first real roller coaster, which she declared "awesome")
Many Adventures of Winnie the Pooh
Chip 'n' Dale's Treehouse
Buzz Lightyear Astro Blasters
Then we headed to Disney's California Adventure, the adjacent park. We watched the stage show Aladdin, then Steve rolled off to the hotel for a nap. The kids and I braved Monsters Inc. Then Katie fell asleep in her stroller.
Cooper hit A Bug's Land and rode some small rides by himself. The operators insisted an adult go with him on the bumper cars, but I couldn't abandon Katie and her stroller, so a cast member was Cooper's passenger.
Katie woke up while we were in line for Playhouse Disney Live, an interactive stage show with dancing, clapping, bubbles and falling streamers. We then picked up Steve from the hotel and returned to Disneyland for the afternoon parade, Splash Mountain (just Cooper and me) and a cruise through Pirates of the Caribbean.
We were all wiped out and ready for bed by the time we returned. Katie wasn't feeling completely better yet (and wouldn't for the entire trip) but managed to stay cheerful if not sometimes quiet (for her, at least).
For the day's photos, click here.Disneyland, arrival
As you may recall, the day we headed to the airport for Disneyland, Katie got sick in the car and again on the flight. She worried aloud for a while about Minnie Mouse seeing her "all dirty." I assured her she could bathe before we met Minnie.
When we walked off the plane and into the terminal, Katie asked, "Where's Minnie?" She seemed certain that the giant hair-bowed mouse was going to meet us at the gate.
After gathering our bags and finding our driver, we settled in for the drive from Ontario to Anaheim. Both Cooper and Katie fell asleep in the car. It didn't take long to wake them once we arrived at our Disneyland hotel.
We opted for room service for dinner that night. The kids cuddled up quickly for bed, wearing their personalized visors, gifts from a group of Betty's friends.
When we walked off the plane and into the terminal, Katie asked, "Where's Minnie?" She seemed certain that the giant hair-bowed mouse was going to meet us at the gate.
After gathering our bags and finding our driver, we settled in for the drive from Ontario to Anaheim. Both Cooper and Katie fell asleep in the car. It didn't take long to wake them once we arrived at our Disneyland hotel.
We opted for room service for dinner that night. The kids cuddled up quickly for bed, wearing their personalized visors, gifts from a group of Betty's friends.
Friday, June 13, 2008
Another question
Do the latest great results mean that Steve's cancer is in remission?
Well, not exactly.
Dr. M explains it this way: Some people think that remission means cure, but that's not the case. In Steve's current case, there is "no evidence of live tumor." Still, the cells left behind "have the potential to grow again but no one knows when that will be."
I certainly don't want to diminish our glorious news -- we have much to celebrate! I do want to offer a realistic picture. Among our many prayers now is that "when that will be" will be never.
I'm still working on editing the hundreds of Disneyland photos. Here is one from our last morning. Steve said his face hurt from smiling so much the day before. How great is that?!
Well, not exactly.
Dr. M explains it this way: Some people think that remission means cure, but that's not the case. In Steve's current case, there is "no evidence of live tumor." Still, the cells left behind "have the potential to grow again but no one knows when that will be."
I certainly don't want to diminish our glorious news -- we have much to celebrate! I do want to offer a realistic picture. Among our many prayers now is that "when that will be" will be never.
I'm still working on editing the hundreds of Disneyland photos. Here is one from our last morning. Steve said his face hurt from smiling so much the day before. How great is that?!
Wednesday, June 11, 2008
Awesome news (detailed version)
What did the PET scan show?
Steve's PET scan (taken last week) showed activity in the brain, based on how much radioactive glucose was metabolized by sections of his brain during the test. The area of the brain stem where Steve's tumor resides was black -- no activity at all. So it looks like the tumor cells that are there have died. Also, the PET scan found no other hot spots, no other areas of the brain that are harboring additional tumors.
What did the MRI show?
The MRI (taken today) showed that the tumor is stable and is slightly smaller than it was two months ago. It's difficult to say exactly how much smaller, as the tumor is not a perfect sphere. When we looked at the images side by side today, Dr. M measured diameters on each image. Looking at one cross section of the tumor, for instance, showed the tumor was 22 mm across in April and 21 mm across today. Another cross section showed that tumor was 6.9 mm across in April and 6.69 across today. All those little numbers add up to smaller mass. Woo hoo!
Dr. M explains that dead cells take up less room than live cells, so the slight shrinkage is somewhat expected.
Also, if you look at the MRI image, you can see where the tumor is slowly breaking up. In April the tumor looked denser (as indicated by the amount of white on the scan). Today the tumor looks more dissipated. That Damm Spot is on the run!
Why is the tumor dead?
1. Radiation therapy combined with chemotherapy
2. Answered prayer
3. Steve's amazingly positive attitude
If the tumor is dead, why does Steve still have symptoms?
The cells are dead, thank God, but they're still there. The brain is an amazing organ that protects our bodies very well. It is reluctant to let anything foreign in, and it is reluctant to let anything out. The tumor is a giant wound that is going to take a long time to heal. As long as the mass (and accompanying inflammation) is there, pushing around where it has no business, there is the possibility of some kind of symptom.
If the tumor is dead, why is he still taking chemotherapy?
When a brain tumor is alive, it's constantly sending off tumor cells. So while those X-rays were aimed directly for the tumor back in February and March, they couldn't reach all the rogue cancer cells running around his brain. The chemo is now chasing down those extra cells, trying to kill them. (The roaming cells are too small to show up on any kind of scan.) The goal is stop them from congregating and forming new sections of live tumor. (So much violent imagery in that paragraph!)
What about his vision?
Dr. M's office is working on a referral to a UT-SW opthamologist. We hope that there is some therapy or relief that the eye doctor can recommend for Steve's double vision, which hasn't resolved or improved since it began in January. The right eye doesn't track with the left. He's somehow able to focus out of just one eye when he needs to -- I think it's kind of a Jedi mind trick.
What about his respiratory issues?
The office is also working on a referral to a pulmonologist to address his respiratory problems. His blood oxygen level was 95-96 today -- better than 92 from two weeks ago but still not ideal. He's continuing to use an inhaler and allergy medicine for relief.
Is Steve still taking the steroid Decadron?
He had been taking 6 mg a day for the past few weeks. On Monday, he stepped down to 5 mg. Dr. M wants us to be as aggressive as possible stepping down. If this week goes well, he'll try 4 mg next week, and then 3, working down as safely and as quickly as possible.
Why is it important to reduce the Decadron?
He definitely has needed the steroid to help with the symptoms related to the swelling and the tumor. Long-term use is taking its toll on Steve's body, though. His skin has thinned, and typically minor flesh wounds are taking a long time to heal. He's been fighting thrush off and on since February. His muscles have thinned a great deal, comprimising his strength and stability. The steroid can mask signs of infection. It can cause irritability and manic behavior.
As he steps down, we'll keep a close eye on symptoms. Dr. M says we may need to allow some symptoms to come back for the sake of dropping down. So, he may need to deal with slurred speech again and/or uneven gait and/or other issues.
What about his fatigue?
Steve's body continues to cope with many challenges. The chemotherapy zaps him. The many other drugs steal energy (though some try to restore it). As his brain works on healing, the rest of his body is just worn out. Dr. M encourages him to rest when his body demands it and not to get too discouraged.
What about other symptoms?
Back in November, Steve started having frequent hiccups. They stopped after the biopsy. Now they're back. Dr. M wants us to pay attention, in the small chance they signal seizures.
He's also having tremors again on his right side, most noticeably when eating. Dr. M says the tremors are related to the Decadron and should subside as he steps off the drug.
His ears have been plugged for a while, as if he's in an airplane all the time. They look normal, though. Dr. M suggested we discuss this with the pulmonologist.
When is the next check-up with Dr. M?
We're scheduled to return July 11.
When is the next MRI?
The next planned scan is early August.
Will Steve go back to M.D. Anderson?
Our plan for now is to continue seeking scans at UT-SW during this course of treatment. If at any time we're uncomfortable with what we're hearing here or if a scan shows recurrence, we'll go back to Houston. We also plan to return at the end of this 12-18 months of chemotherapy.
What great things did Dr. M have to say about Steve?
She says that he leads the pack among her patients for having a great attitude. She marvels at how little he complains, how determined he is to get better, how focused he is on getting rid of the tumor. She says his attitude and spirit are key to his recovery.
Our thanks extends to all of you, who continue to shower us with prayer, good wishes, help around the house, meals, cards, phone calls, gifts and more. Some days I think we can just return to our "normal" life, when we didn't rely on others too often (and we could actually extend help to others), but most days I realize that your help is still so vital, that we're fighting every day and need a deep team to keep us going. Steve and I know how blessed we are that you all are fighting with us and rejoicing with us!
Steve's PET scan (taken last week) showed activity in the brain, based on how much radioactive glucose was metabolized by sections of his brain during the test. The area of the brain stem where Steve's tumor resides was black -- no activity at all. So it looks like the tumor cells that are there have died. Also, the PET scan found no other hot spots, no other areas of the brain that are harboring additional tumors.
What did the MRI show?
The MRI (taken today) showed that the tumor is stable and is slightly smaller than it was two months ago. It's difficult to say exactly how much smaller, as the tumor is not a perfect sphere. When we looked at the images side by side today, Dr. M measured diameters on each image. Looking at one cross section of the tumor, for instance, showed the tumor was 22 mm across in April and 21 mm across today. Another cross section showed that tumor was 6.9 mm across in April and 6.69 across today. All those little numbers add up to smaller mass. Woo hoo!
Dr. M explains that dead cells take up less room than live cells, so the slight shrinkage is somewhat expected.
Also, if you look at the MRI image, you can see where the tumor is slowly breaking up. In April the tumor looked denser (as indicated by the amount of white on the scan). Today the tumor looks more dissipated. That Damm Spot is on the run!
Why is the tumor dead?
1. Radiation therapy combined with chemotherapy
2. Answered prayer
3. Steve's amazingly positive attitude
If the tumor is dead, why does Steve still have symptoms?
The cells are dead, thank God, but they're still there. The brain is an amazing organ that protects our bodies very well. It is reluctant to let anything foreign in, and it is reluctant to let anything out. The tumor is a giant wound that is going to take a long time to heal. As long as the mass (and accompanying inflammation) is there, pushing around where it has no business, there is the possibility of some kind of symptom.
If the tumor is dead, why is he still taking chemotherapy?
When a brain tumor is alive, it's constantly sending off tumor cells. So while those X-rays were aimed directly for the tumor back in February and March, they couldn't reach all the rogue cancer cells running around his brain. The chemo is now chasing down those extra cells, trying to kill them. (The roaming cells are too small to show up on any kind of scan.) The goal is stop them from congregating and forming new sections of live tumor. (So much violent imagery in that paragraph!)
What about his vision?
Dr. M's office is working on a referral to a UT-SW opthamologist. We hope that there is some therapy or relief that the eye doctor can recommend for Steve's double vision, which hasn't resolved or improved since it began in January. The right eye doesn't track with the left. He's somehow able to focus out of just one eye when he needs to -- I think it's kind of a Jedi mind trick.
What about his respiratory issues?
The office is also working on a referral to a pulmonologist to address his respiratory problems. His blood oxygen level was 95-96 today -- better than 92 from two weeks ago but still not ideal. He's continuing to use an inhaler and allergy medicine for relief.
Is Steve still taking the steroid Decadron?
He had been taking 6 mg a day for the past few weeks. On Monday, he stepped down to 5 mg. Dr. M wants us to be as aggressive as possible stepping down. If this week goes well, he'll try 4 mg next week, and then 3, working down as safely and as quickly as possible.
Why is it important to reduce the Decadron?
He definitely has needed the steroid to help with the symptoms related to the swelling and the tumor. Long-term use is taking its toll on Steve's body, though. His skin has thinned, and typically minor flesh wounds are taking a long time to heal. He's been fighting thrush off and on since February. His muscles have thinned a great deal, comprimising his strength and stability. The steroid can mask signs of infection. It can cause irritability and manic behavior.
As he steps down, we'll keep a close eye on symptoms. Dr. M says we may need to allow some symptoms to come back for the sake of dropping down. So, he may need to deal with slurred speech again and/or uneven gait and/or other issues.
What about his fatigue?
Steve's body continues to cope with many challenges. The chemotherapy zaps him. The many other drugs steal energy (though some try to restore it). As his brain works on healing, the rest of his body is just worn out. Dr. M encourages him to rest when his body demands it and not to get too discouraged.
What about other symptoms?
Back in November, Steve started having frequent hiccups. They stopped after the biopsy. Now they're back. Dr. M wants us to pay attention, in the small chance they signal seizures.
He's also having tremors again on his right side, most noticeably when eating. Dr. M says the tremors are related to the Decadron and should subside as he steps off the drug.
His ears have been plugged for a while, as if he's in an airplane all the time. They look normal, though. Dr. M suggested we discuss this with the pulmonologist.
When is the next check-up with Dr. M?
We're scheduled to return July 11.
When is the next MRI?
The next planned scan is early August.
Will Steve go back to M.D. Anderson?
Our plan for now is to continue seeking scans at UT-SW during this course of treatment. If at any time we're uncomfortable with what we're hearing here or if a scan shows recurrence, we'll go back to Houston. We also plan to return at the end of this 12-18 months of chemotherapy.
What great things did Dr. M have to say about Steve?
She says that he leads the pack among her patients for having a great attitude. She marvels at how little he complains, how determined he is to get better, how focused he is on getting rid of the tumor. She says his attitude and spirit are key to his recovery.
Our thanks extends to all of you, who continue to shower us with prayer, good wishes, help around the house, meals, cards, phone calls, gifts and more. Some days I think we can just return to our "normal" life, when we didn't rely on others too often (and we could actually extend help to others), but most days I realize that your help is still so vital, that we're fighting every day and need a deep team to keep us going. Steve and I know how blessed we are that you all are fighting with us and rejoicing with us!
Awesome news (quick version)
The PET scan shows the tumor is no longer active.
The MRI shows the tumor is a tiny bit smaller (probably because dead cells take up less room than live cells).
Dr. M believes that the radiation therapy combined with the chemotherapy knocked it out. The ongoing chemotherapy is designed to kill the live cancer cells that are roaming around his brain. The live cells are too small to show up on any scan. The hope is they stay that way, never congregating and creating more.
More details of this awesome news to come later!
The MRI shows the tumor is a tiny bit smaller (probably because dead cells take up less room than live cells).
Dr. M believes that the radiation therapy combined with the chemotherapy knocked it out. The ongoing chemotherapy is designed to kill the live cancer cells that are roaming around his brain. The live cells are too small to show up on any scan. The hope is they stay that way, never congregating and creating more.
More details of this awesome news to come later!
Sunday, June 8, 2008
Coming home
Vacation can't last forever, so we're coming home. Katie fell asleep in the ride to the airport 90 minutes ago and has been ever since. Steve is feeling well, though maybe a bit wistful for the electric scooter. Cooper made a friend at the gate and has been playing Legos and discussing Spiderman for the past hour. Real life begins again soon!
Friday, June 6, 2008
Full day
We are happily worn out from our first day at the parks. Katie was ill again this morning. After a phone call to expert Aunt Mel and a cab ride to the nearest 24-hour pharmacy, we gave Katie some anti-nausea medicine that seemed to help. She's much better tonight.
You should see Steve on his rented electric scooter! He mastered it quickly and weaves in and out of the Disney crowds with ease. I think he's enjoying being behind the wheel, even if it's battery powered, for the first time since mid-December.
You should see Steve on his rented electric scooter! He mastered it quickly and weaves in and out of the Disney crowds with ease. I think he's enjoying being behind the wheel, even if it's battery powered, for the first time since mid-December.
Thursday, June 5, 2008
Landed
Poor Katie got sick again three times. She's been so good-natured, even though we won't let her eat or drink right now. She's worried that Minnie Mouse will see her like this and is anxioius for a bath.
Trip report: Surely it will get better!
About five miles from home, on the way to the airport, Katie threw up all over herself, the car seat and the new car. She seems to be feeling OK now, after about 15 minutes of freaking out over the experience. We're praying it's a short bug and she'll make it through the flight OK. She is tired but not behaving like she's ill. Updates later!
Another adventure
Steve's PET scan was fairly easy yesterday, he reports. The tech had to stick him twice to get a good IV entry. The rest of the test was simple. We should learn the results Wednesday.
While Steve was at UT-SW, Katie and I were at Cooper's school, celebrating with about 140 graduating first-graders at their year-end party. The festivities included hula hoops, a clown on stilts, snow cones, popcorn, temporary tattoos and tricycle races. Today is his last day of school. We all attended the morning assembly, where Cooper was recognized among his classmates for perseverance. We think it's a great way to end a sometimes rocky year. Cooper has almost always maintained a good attitude the past six months, especially at school. He's definitely had some rough moments, as we all have, but he remains enthusiastic and energetic about just about everything. His spirit is contagious.
After we pick him up at 3 p.m., the four of us are headed to the airport for a little trip to Disneyland. We've been planning the California getaway for months but remained somewhat hesitant, not knowing how Steve would handle the crowds. We've rented an electric scooter for the trip, so he can stay off his feet. He'll be in the parks with us early in the day, before the sun is too high, and later in day, when the sun is going down. He won't ride many rides -- we certainly don't need to jostle that sweet head of his. We're stocked with sunscreen, hats and other protective gear. We're staying at a hotel at the resort to make coming and going easier. We are super excited! (We took Cooper just before he turned 3, and we've always promised Katie she could go before she turns 3.)
My mom is still in ICU at Scott & White Hospital in Temple. She is having another scope today, as there is still some internal bleeding. I drove to Temple and back on Tuesday to see her. She is in excellent hands there. Still, I'm still a little nervous about leaving the state while she's so ill. I do trust that whatever happens is what is meant to be. She has a peace about her that I haven't seen in some time.
While Steve was at UT-SW, Katie and I were at Cooper's school, celebrating with about 140 graduating first-graders at their year-end party. The festivities included hula hoops, a clown on stilts, snow cones, popcorn, temporary tattoos and tricycle races. Today is his last day of school. We all attended the morning assembly, where Cooper was recognized among his classmates for perseverance. We think it's a great way to end a sometimes rocky year. Cooper has almost always maintained a good attitude the past six months, especially at school. He's definitely had some rough moments, as we all have, but he remains enthusiastic and energetic about just about everything. His spirit is contagious.
After we pick him up at 3 p.m., the four of us are headed to the airport for a little trip to Disneyland. We've been planning the California getaway for months but remained somewhat hesitant, not knowing how Steve would handle the crowds. We've rented an electric scooter for the trip, so he can stay off his feet. He'll be in the parks with us early in the day, before the sun is too high, and later in day, when the sun is going down. He won't ride many rides -- we certainly don't need to jostle that sweet head of his. We're stocked with sunscreen, hats and other protective gear. We're staying at a hotel at the resort to make coming and going easier. We are super excited! (We took Cooper just before he turned 3, and we've always promised Katie she could go before she turns 3.)
My mom is still in ICU at Scott & White Hospital in Temple. She is having another scope today, as there is still some internal bleeding. I drove to Temple and back on Tuesday to see her. She is in excellent hands there. Still, I'm still a little nervous about leaving the state while she's so ill. I do trust that whatever happens is what is meant to be. She has a peace about her that I haven't seen in some time.
Monday, June 2, 2008
Improving
Steve's blood oxygen level is up to 96. His spirometer reading was much better, too. The thrush is mostly resolved.
Steve will stay on his new allergy/thrush/inhaler meds for two weeks. By then we'll have seen the oncologist, Dr. M, who can make sure he's continuing to improve. Brooke suggested today that we talk about seeing a pulmonologist if necessary.
The next medical step is a PET scan on Wednesday. This is a new diagnostic tool for Steve. Dr. M says she used them more frequently at her previous center (the Dana-Farber Cancer Institute in Boston) than they are used at UT-SW. A PET scan looks at chemical activity in the body. Steve's will be focused just on the brain. It will be used to help determine the current state of the tumor, look for potential tumor cell growth in other parts of the brain and serve as a baseline for future scans.
Steve will need to fast the morning of the test. He'll be injected with a radioactive tracer and, after the tracer has time to move around his body, he'll be moved into a scanner. The test should take about two hours total. We expect to learn results at the June 11 appointment with Dr. M. That's the same day as Steve's next MRI -- we'll get those results the same day.
I expect Steve and I will both be anxious in the days leading to June 11. We're taking Cooper and Katie out of town for a long weekend to celebrate the end of the school year. When we get home, Aunt Ami will be here for a few days to help with the transition to summer, appointments and general TLC.
Steve will stay on his new allergy/thrush/inhaler meds for two weeks. By then we'll have seen the oncologist, Dr. M, who can make sure he's continuing to improve. Brooke suggested today that we talk about seeing a pulmonologist if necessary.
The next medical step is a PET scan on Wednesday. This is a new diagnostic tool for Steve. Dr. M says she used them more frequently at her previous center (the Dana-Farber Cancer Institute in Boston) than they are used at UT-SW. A PET scan looks at chemical activity in the body. Steve's will be focused just on the brain. It will be used to help determine the current state of the tumor, look for potential tumor cell growth in other parts of the brain and serve as a baseline for future scans.
Steve will need to fast the morning of the test. He'll be injected with a radioactive tracer and, after the tracer has time to move around his body, he'll be moved into a scanner. The test should take about two hours total. We expect to learn results at the June 11 appointment with Dr. M. That's the same day as Steve's next MRI -- we'll get those results the same day.
I expect Steve and I will both be anxious in the days leading to June 11. We're taking Cooper and Katie out of town for a long weekend to celebrate the end of the school year. When we get home, Aunt Ami will be here for a few days to help with the transition to summer, appointments and general TLC.
Friday, May 30, 2008
From this morning
At the follow-up visit this morning with Steve's doctor's physician assistant (super cheerful Brooke), we learned that his spirometer level is better. That means he's able to expel more air today than he was two weeks ago.
His blood oxygen level hasn't improved, though. Most people have a level of 99 or 100 percent, meaning their blood cells are fully saturated with oxygen. Steve's level was 92 percent today.
Brooke's remedies so far: a new inhaler, some allergy medicine and another antibiotic. He also had a chest X-ray taken at the hospital. The doctor's office will call today if necessary. Otherwise we'll see her again early Monday morning.
He also has another case of thrush -- an infection in his throat. He's battled it off and on since taking Decadron. The steroid lowers his immunity and makes him more susceptible to thrush. The infection is part of the reason why food doesn't taste very good to him. He mostly enjoys spicy food right now -- anything that can penetrate the thrush.
I'll update this weekend if we hear anything before Monday.
1:20 p.m. update: Brooke just called. Steve's chest X-ray is normal! No pneumonia! Woo hoo!
His blood oxygen level hasn't improved, though. Most people have a level of 99 or 100 percent, meaning their blood cells are fully saturated with oxygen. Steve's level was 92 percent today.
Brooke's remedies so far: a new inhaler, some allergy medicine and another antibiotic. He also had a chest X-ray taken at the hospital. The doctor's office will call today if necessary. Otherwise we'll see her again early Monday morning.
He also has another case of thrush -- an infection in his throat. He's battled it off and on since taking Decadron. The steroid lowers his immunity and makes him more susceptible to thrush. The infection is part of the reason why food doesn't taste very good to him. He mostly enjoys spicy food right now -- anything that can penetrate the thrush.
I'll update this weekend if we hear anything before Monday.
1:20 p.m. update: Brooke just called. Steve's chest X-ray is normal! No pneumonia! Woo hoo!
Thursday, May 29, 2008
Red rising
This week's lab work shows that Steve's red blood cell count is higher and just shy of being in range. His count is 4.09. Range begins at 4.10. So close! The trick will be keeping the count that high this week, during chemotherapy.
Tomorrow is his follow-up appointment from the respiratory infection. We're looking for a higher spirometer number and increased blood oxygen levels.
Tomorrow is his follow-up appointment from the respiratory infection. We're looking for a higher spirometer number and increased blood oxygen levels.
Tuesday, May 27, 2008
Up and down
Steve was particularly worn out last week. He worked a long day Tuesday, came home exhausted and worked from home Wednesday. He worked a long day Thursday, came home exhausted and worked from home Friday.
Last week's blood work showed his white blood cell counts were back in range, probably indicating that his respiratory infection was resolving. His red counts were out of range just a bit, on the low side, indicating anemia. Chemo-induced anemia is common. After all, the chemo drugs are trying to convince cells to stop reproducing. When the red cell count is down, your body is more tired. We're anxious to receive today's lab results, hoping that a week off of chemo allowed his red cells more time and freedom to run wild.
Thankfully there aren't any new symptoms -- just continuation of the oldies, such as double vision, no gag reflex, weakened limbs, fatigue.
Steve hasn't driven a car since December, and after months of consideration, we decided to become a one-car family. We've sold my little SUV to my sister Melane and Steve's car to Aunt Ami for her younger daughter to drive. And Friday we bought a beautiful blue minivan, which should provide years free of car trouble worries, comfort for Steve the passenger, room for Cooper and Katie's friends to tag along. We continue to pray that Steve's vision and strength will return, and then we'll celebrate by buying a second car!
Steve and I continue to be humbled by the care, prayers and support you all provide. Thanks for sticking with us through this journey.
Last week's blood work showed his white blood cell counts were back in range, probably indicating that his respiratory infection was resolving. His red counts were out of range just a bit, on the low side, indicating anemia. Chemo-induced anemia is common. After all, the chemo drugs are trying to convince cells to stop reproducing. When the red cell count is down, your body is more tired. We're anxious to receive today's lab results, hoping that a week off of chemo allowed his red cells more time and freedom to run wild.
Thankfully there aren't any new symptoms -- just continuation of the oldies, such as double vision, no gag reflex, weakened limbs, fatigue.
Steve hasn't driven a car since December, and after months of consideration, we decided to become a one-car family. We've sold my little SUV to my sister Melane and Steve's car to Aunt Ami for her younger daughter to drive. And Friday we bought a beautiful blue minivan, which should provide years free of car trouble worries, comfort for Steve the passenger, room for Cooper and Katie's friends to tag along. We continue to pray that Steve's vision and strength will return, and then we'll celebrate by buying a second car!
Steve and I continue to be humbled by the care, prayers and support you all provide. Thanks for sticking with us through this journey.
Tuesday, May 20, 2008
In the news
We'll be hearing and reading a lot more about brain tumors in the next couple of days, after Sen. Edward Kennedy's diagnosis. News of any new cancer diagnosis hits me and Steve hard these days, as we've gained some first-hand understanding of some of what the person and his or her family and loved ones are facing. News of another glioma (about 9,000 diagnosed in the U.S. each year) is even harder. Empathy hits overdrive.
Kennedy has a malignant glioma in his left parietal lobe. The parietal lobe is the top center of the brain.
For comparison, Steve has a malignant glioma in his brain stem, which is in the deep center of the brain.
So, they have similar tumors but in different locations and with different symptoms. For example, Kennedy's most obvious symptom, apparently, was the seizure he had this weekend. In Steve's case, the brain stem doesn't seize, so for now we don't have to worry about seizures. Some tumors of the parietal lobe are operable (though I'm not sure about Kennedy's). Most every expert agrees that tumors of the brain stem are inoperable.
I've already read a number of news stories about Kennedy's diagnosis. Every story includes the same statistics we've known for months -- patients with grade 4 gliomas have a grim outlook, about a year of life after diagnosis. Those are based on statistics and averages, and many doctors will tell you that statistics currently quoted don't reflect the most recent life-extending advances in medicine.
I'm sure we're among many families coping with brain tumors who hope for good to come of Kennedy's tragic condition. We hope that his doctors and other health-care providers find the right mix of treatment to kill those awful tumor cells and to extend his life long past the quoted statistics. And perhaps his brain tumor will increase awareness of brain cancer and possibly even funding devoted to researching cures.
Kennedy has a malignant glioma in his left parietal lobe. The parietal lobe is the top center of the brain.
For comparison, Steve has a malignant glioma in his brain stem, which is in the deep center of the brain.
So, they have similar tumors but in different locations and with different symptoms. For example, Kennedy's most obvious symptom, apparently, was the seizure he had this weekend. In Steve's case, the brain stem doesn't seize, so for now we don't have to worry about seizures. Some tumors of the parietal lobe are operable (though I'm not sure about Kennedy's). Most every expert agrees that tumors of the brain stem are inoperable.
I've already read a number of news stories about Kennedy's diagnosis. Every story includes the same statistics we've known for months -- patients with grade 4 gliomas have a grim outlook, about a year of life after diagnosis. Those are based on statistics and averages, and many doctors will tell you that statistics currently quoted don't reflect the most recent life-extending advances in medicine.
I'm sure we're among many families coping with brain tumors who hope for good to come of Kennedy's tragic condition. We hope that his doctors and other health-care providers find the right mix of treatment to kill those awful tumor cells and to extend his life long past the quoted statistics. And perhaps his brain tumor will increase awareness of brain cancer and possibly even funding devoted to researching cures.
Monday, May 19, 2008
Better
After a weekend of lots of rest and new meds, Steve's cough and breathing have improved. He worked today and came home extra tired, and his voice has weakened since he's been home. But it appears that the respiratory troubles are waning. He'll have blood drawn early this week, which should give us an idea of any remaining infection.
Friday, May 16, 2008
Still recovering
Steve's cough hasn't really cleared from last week, and some days it sounds like it's getting worse. Also, his blood oxygen level dipped back to 95 yesterday and he's more worn out than usual. His mom took him to his primary-care physician today (thanks, Betty!) -- a great help as I've got work deadlines today.
The physician's assistant wasn't pleased with his spirometer (an instrument that measures breathing) results, so she's given him an inhaler. Plus he has a sinus infection, so he's on a second antibiotic in two weeks. I expect that with those medications and a weekend of rest, he'll start feeling better soon.
The physician's assistant wasn't pleased with his spirometer (an instrument that measures breathing) results, so she's given him an inhaler. Plus he has a sinus infection, so he's on a second antibiotic in two weeks. I expect that with those medications and a weekend of rest, he'll start feeling better soon.
Wednesday, May 14, 2008
Not to worry
Dr. M's office isn't concerned about Steve's white blood cell count, so we'll work on not being concerned, too. His blood is drawn weekly, so we'll have new numbers in just a few days.
Thanks for checking in on Steve!
Thanks for checking in on Steve!
Tuesday, May 13, 2008
Cycle 2 begins
Steve and I have been counting his chemotherapy cycles all wrong. (So much we're learning every day!) His first round of chemo was with radiation therapy, but imagine that as round 0. His first round of chemo post-radiation consisted of a week on, a week off, a week on and a week off.
Last night he began cycle 2, meaning another four weeks -- a week of chemo, a week off, a week of chemo, a week off.
Once again, he's had no trouble with the oral Temodar. Isn't that great?!
His white blood cell count from today's blood work is elevated. He saw the results after 5, so it was too late to consult Dr. M on what the numbers mean. I suspect it's from the respiratory infection he's fighting and won't worry until we're told otherwise. His blood oxygen level was up to 97 today, back on its way to 100.
We spent some of the late afternoon out front, playing with neighbors and enjoying the mild temperatures (though not loving the high humidity). Aren't these two dreamy?
Last night he began cycle 2, meaning another four weeks -- a week of chemo, a week off, a week of chemo, a week off.
Once again, he's had no trouble with the oral Temodar. Isn't that great?!
His white blood cell count from today's blood work is elevated. He saw the results after 5, so it was too late to consult Dr. M on what the numbers mean. I suspect it's from the respiratory infection he's fighting and won't worry until we're told otherwise. His blood oxygen level was up to 97 today, back on its way to 100.
We spent some of the late afternoon out front, playing with neighbors and enjoying the mild temperatures (though not loving the high humidity). Aren't these two dreamy?
Thursday, May 8, 2008
Checkup
Yesterday we spent a chunk of the day at UT-SW for a routine blood draw and visit with Steve's oncologist, Dr. M. When we first arrived at the cancer center, the power had just gone off. A few minutes later, the generator quit working. We spent about an hour in a darkened waiting room, waiting for the power to return and the process to resume.
Steve's phlebotomist was able to stick him on the first try. He's worked with Steve enough to know that accessing veins on his arm is tricky, so he went straight for the right hand, which is now bruised more than usual.
We waited some more and then spent about 45 minutes with Dr. M, who wanted to review his chemotherapy regimen plus his extra drugs.
She also addressed his current cough, which we think has been contributing to his weakened voice. His blood oxygen level dropped to 95 (out of 100) yesterday; it had been 96 when he checked it the day before. His blood work indicated his lymph count was slightly out of range. He takes Dapsone to prevent pneumonia, but we're still always worried about fluid in his lungs, especially with his aspiration risk. And we learned yesterday that prolonged use of Decadron masks a fever, so we wouldn't necessarily immediately know if his body is trying to fight off infection. (If his fever is 99.5 or higher, Dr. M told us to head straight to the ER -- we should call her on the way, not before.) To be safe, she ordered a chest X-ray, so after the appointment we headed upstairs for a scan, which thankfully came back clean! He's taking an antibiotic for the next week to address any possible underlying infection.
As I've written before, Dr. M's manner is comforting. She expressed sincere admiration for the way Steve and I have handled the past few months, giving Steve extra credit for continuing to work and keeping a calm, level-headed demeanor. She talked with me about giving up at least three things I currently do, to ease the burden of caregiving and trying to keep life somewhat normal for our family. I've already given up just about every volunteer activity -- all but one church committee, leading Sunday school, editing the PTA newsletter, general help at school. I continue to rely on friends and family for meals twice a week; laundry fairies who pick up, wash, dry and fold when it gets out of control here; two or three Steve driving trips each week; help picking up or dropping off Cooper in emergencies; care for Katie during doctor appointments; and much more. Truly, there is a whole team of unsung heroes that keeps this family moving!
She reminded us that just because we give up something now -- extracurricular activities, volunteerism, friends' birthday parties, other events we would normally attend -- doesn't mean they're gone forever. But this is Steve's time to be on chemotherapy for brain cancer, a time for him to heal and for us to enjoy one another's company without extra stress. It's the same message that our friend Jen shares beautifully -- there are seasons in life, and this is a different season for us.
Steve's phlebotomist was able to stick him on the first try. He's worked with Steve enough to know that accessing veins on his arm is tricky, so he went straight for the right hand, which is now bruised more than usual.
We waited some more and then spent about 45 minutes with Dr. M, who wanted to review his chemotherapy regimen plus his extra drugs.
She also addressed his current cough, which we think has been contributing to his weakened voice. His blood oxygen level dropped to 95 (out of 100) yesterday; it had been 96 when he checked it the day before. His blood work indicated his lymph count was slightly out of range. He takes Dapsone to prevent pneumonia, but we're still always worried about fluid in his lungs, especially with his aspiration risk. And we learned yesterday that prolonged use of Decadron masks a fever, so we wouldn't necessarily immediately know if his body is trying to fight off infection. (If his fever is 99.5 or higher, Dr. M told us to head straight to the ER -- we should call her on the way, not before.) To be safe, she ordered a chest X-ray, so after the appointment we headed upstairs for a scan, which thankfully came back clean! He's taking an antibiotic for the next week to address any possible underlying infection.
As I've written before, Dr. M's manner is comforting. She expressed sincere admiration for the way Steve and I have handled the past few months, giving Steve extra credit for continuing to work and keeping a calm, level-headed demeanor. She talked with me about giving up at least three things I currently do, to ease the burden of caregiving and trying to keep life somewhat normal for our family. I've already given up just about every volunteer activity -- all but one church committee, leading Sunday school, editing the PTA newsletter, general help at school. I continue to rely on friends and family for meals twice a week; laundry fairies who pick up, wash, dry and fold when it gets out of control here; two or three Steve driving trips each week; help picking up or dropping off Cooper in emergencies; care for Katie during doctor appointments; and much more. Truly, there is a whole team of unsung heroes that keeps this family moving!
She reminded us that just because we give up something now -- extracurricular activities, volunteerism, friends' birthday parties, other events we would normally attend -- doesn't mean they're gone forever. But this is Steve's time to be on chemotherapy for brain cancer, a time for him to heal and for us to enjoy one another's company without extra stress. It's the same message that our friend Jen shares beautifully -- there are seasons in life, and this is a different season for us.
For everything there is a season,
and a time for every matter under heaven:
a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to throw away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to throw away;
a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace.
(Ecclesiastes 3:1-8 NRSV)
Monday, May 5, 2008
Round 3
Steve finished his third round of chemotherapy last night, with no obvious side effects. Isn't he amazing? More than one of our friends call him Superman. It's true!
The Damm boys -- Cooper, Steve and Papa Jim -- had a big adventure this weekend. They all attended Cub World with Pack 443, spending Saturday night at Camp Wisdom. Cooper officially became a Wolf Cub during the crossover ceremony. Steve sent the following note at 8:38 p.m. Saturday:
Cooper D just crossed the bridge and has been accepted by the pack as a Wolf scout. He has a new neckerchief! I got to stand up there with him.
Jim helped haul all the gear, set up the tent, keep up with Cooper and more so that Steve could be there but not get too tired. Our den leader, Wade, and the great parents of 443 helped as well. Steve especially needed help keeping steady on the uneven ground.
Cooper loved the experience -- BB guns, sponge war, whittling, making s'mores, sleeping in a tent. We are so thankful that both his Daddy and Papa were able to be there with him.
The Damm boys -- Cooper, Steve and Papa Jim -- had a big adventure this weekend. They all attended Cub World with Pack 443, spending Saturday night at Camp Wisdom. Cooper officially became a Wolf Cub during the crossover ceremony. Steve sent the following note at 8:38 p.m. Saturday:
Cooper D just crossed the bridge and has been accepted by the pack as a Wolf scout. He has a new neckerchief! I got to stand up there with him.
Jim helped haul all the gear, set up the tent, keep up with Cooper and more so that Steve could be there but not get too tired. Our den leader, Wade, and the great parents of 443 helped as well. Steve especially needed help keeping steady on the uneven ground.
Cooper loved the experience -- BB guns, sponge war, whittling, making s'mores, sleeping in a tent. We are so thankful that both his Daddy and Papa were able to be there with him.
Sunday, May 4, 2008
Chicago, Day 4
Our early afternoon flight home left little time for sight-seeing, which is probably for the best. We were all tired. We did have time to visit the West Egg again, where Katie devoured her favorite strawberry banana pancakes. Some of the staff knew her by name by Monday morning! 
After breakfast, we had about 45 minutes to walk down Michigan Avenue (the Magnificent Mile) before meeting our driver at the hotel. (Six don't fit in a cab, and we didn't want to take two to the airport, so we found a hotel-recommended driver who fit us in his Suburban.)Grandma gave Cooper her camera, and he took some great shots of city life. We wandered around the Disney Store for a few minutes and then walked back. Our journey to the airport was smooth and uneventful, and we arrived at O'Hare in plenty of time to check in, clear security, grab a hot dog and board.
We waited for all the other passengers to de-board before we left the plane at D/FW -- to give Steve plenty of time and plenty of room to walk out. Waiting was worth it for Cooper and Katie, who were invited by the co-pilot to sit in the cockpit, press buttons and move controls.
We loved our adventure, even with its moments of harsh reality. Thanks to Jim and Betty for the trip, to Uncle Jim for joining us and to our ever-growing extended family who offered advice and good wishes.
For a few more photos from Day 4, click here.
For some photos that Cooper took, click here.
Wednesday, April 30, 2008
Chicago, Day 3
Sunday morning we headed to the John Hancock Center, which is the second tallest building in Chicago (the Sears Tower is few stories taller) and arguably offers the best view in the city. The observation deck is on the 94th floor, and the seven of us spent a lot of time walking around, admiring the view and beautiful architecture.
As you'll recall from the Day 2 recap, Steve was very active on Saturday. All that activity caught up with him early Sunday, and he was too exhausted to continue. So he and Betty took a cab back to the hotel to rest, and Jim, Jim and I took Cooper and Katie to Millennium Park, a huge public space bordered on the west by Michigan Avenue.
We spent a lot of time in and around "Cloud Gate" (a.k.a. the Bean), a stainless steel sculpture that creates fascinating mirror images. We also loved the giant Crown Fountain -- a reflecting pool is bookended by two 50-foot-tall towers with digital images of faces that change. The image of a child's face appears still until he winks at you. And then he puckers and water shoots out of his mouth! If it had been 20 degrees warmer, we would have let the kids frolic in the water. I imagine it's a popular spot in summer.
After plenty of outdoor time, the Jims took Katie and Cooper back to the hotel, and I headed to Due to pick up some deep-dish pizza. (Due is the second installation of Uno's.) We ate that in the room and then got ready for Wicked.
As you'll recall from the Day 2 recap, Steve was very active on Saturday. All that activity caught up with him early Sunday, and he was too exhausted to continue. So he and Betty took a cab back to the hotel to rest, and Jim, Jim and I took Cooper and Katie to Millennium Park, a huge public space bordered on the west by Michigan Avenue.We spent a lot of time in and around "Cloud Gate" (a.k.a. the Bean), a stainless steel sculpture that creates fascinating mirror images. We also loved the giant Crown Fountain -- a reflecting pool is bookended by two 50-foot-tall towers with digital images of faces that change. The image of a child's face appears still until he winks at you. And then he puckers and water shoots out of his mouth! If it had been 20 degrees warmer, we would have let the kids frolic in the water. I imagine it's a popular spot in summer.
Nearby is the Art Institute's sculpture garden featuring some of our favorite artists -- Moore and Calder. Cooper spied the red Calder from far away and said it looked like a dragon. Katie thought it looked like an airplane or butterfly. Its name is "Flying Dragon."
After plenty of outdoor time, the Jims took Katie and Cooper back to the hotel, and I headed to Due to pick up some deep-dish pizza. (Due is the second installation of Uno's.) We ate that in the room and then got ready for Wicked.Uncle Jim left for the airport, and Grandma and Papa were kind enough to stay with Katie, who slept almost the entire time we were gone. At home she relies on a daily nap and about 11 hours of sleep each night. She was running a huge sleep deficit by Sunday.
I wish I had been allowed to take photos during the performance, just to have images of Cooper's expressions during certain scenes. Steve and I saw Wicked a year ago at Fair Park in Dallas. Ever since, Cooper and Katie have loved to hear about the story and listen to the soundtrack. For Christmas Cooper received a book about the Broadway production (he's much too young to read or be exposed to the novel). So, he was really ready to experience the actual production. He was thrilled (and sometimes understandably scared) to see the huge dragon above the stage, Galinda and Elphaba meeting for the first time, the Wizard of Oz's facade, the monkeys growing wings, Elphaba taking flight at the end of the first act. It was just magical.
Katie was disappointed that she wasn't invited, but 2-year-olds aren't allowed in the theater, and it would have been way too scary for her, and I don't think she could have sat still through the show. I have promised that she can go when she's 6, so let's hope it's still playing somewhere or touring!
Cooper requested to eat in the hotel room again, so he and Steve stayed in, and Katie, Betty, Jim and I ventured out. We ate dinner at Rosebud on Rush and brought home plenty of food to share.
For more photos from Day 3, click here.
Coming next: Our last few hours in Chicago
Tuesday, April 29, 2008
Health update
Steve's blood work from yesterday showed that his counts are in good ranges, so he was clear to start his third round of chemotherapy last night. The night went well, and he's now getting ready to go to work.
He's continuing to take 6 mg of Decadron. His symptoms improved on that dosage. His voice is still weakening as the day continues, but his left side is more functional.
This is the final week of the first round of Accutane. He'll take next week off and start 21 days again. His lips have been dry; he's using Vaseline Lip Therapy. His eyes have been dry; he's using artificial tears. His skin hasn't been affected too badly, thanks in part to the soothing soaps and lotions from friends.
He's continuing to take 6 mg of Decadron. His symptoms improved on that dosage. His voice is still weakening as the day continues, but his left side is more functional.
This is the final week of the first round of Accutane. He'll take next week off and start 21 days again. His lips have been dry; he's using Vaseline Lip Therapy. His eyes have been dry; he's using artificial tears. His skin hasn't been affected too badly, thanks in part to the soothing soaps and lotions from friends.
Sunday, April 27, 2008
Chicago, Day 2
Our second day in the Windy City was long and filled with fun.
Steve, the kids and I returned to the West Egg for breakfast then took a cab to the Museum of Science and Industry. This is the kind of museum that you could spend three or four days exploring. We spent about five hours, which was almost too much for Katie and not enough for Cooper.
Jim, Betty and Jim met us at the museum not long after we arrived. I really appreciated having so many adults to keep track of the two youngest Damms. Steve was able to walk from exhibit to exhibit with us and participate when he felt strong enough or sit when he needed.
Cooper loved all of it, especially the extensive submarine exhibit, the Swiss Jolly Ball (a giant pinball machine-like display), the toy-making factory and the water space.
We left the museum in the middle of a gentle rainstorm. After getting Cooper and Katie settled in for some quiet time, Steve and I ventured out again, for a quick trip to the Art Institute.
Steve, the kids and I returned to the West Egg for breakfast then took a cab to the Museum of Science and Industry. This is the kind of museum that you could spend three or four days exploring. We spent about five hours, which was almost too much for Katie and not enough for Cooper.
Jim, Betty and Jim met us at the museum not long after we arrived. I really appreciated having so many adults to keep track of the two youngest Damms. Steve was able to walk from exhibit to exhibit with us and participate when he felt strong enough or sit when he needed.Katie loved the farming section, water space, circus area and transportation space. She lasted about two and a half hours before falling asleep in Grandma's arms.
Cooper loved all of it, especially the extensive submarine exhibit, the Swiss Jolly Ball (a giant pinball machine-like display), the toy-making factory and the water space. We left the museum in the middle of a gentle rainstorm. After getting Cooper and Katie settled in for some quiet time, Steve and I ventured out again, for a quick trip to the Art Institute.Steve and I love art, but we don't agree on favorite styles. He loves modern art. I love impressionism and post-impressionism. The Art Institute offers enough to satisfy us both. The collection includes some lovely Monet paintings that reminded us of our five-year anniversary trip to Europe.
We returned to our hotel, and while Steve rested, Jim, Betty and I took the kids to the hotel's indoor swimming pool. They were able to "get their wiggles out" before dinner.
The seven of us met at Brasserie Jo, a French-style restaurant in downtown Chicago. The noise level was high enough that no one was bothered by two children, and the staff was very accommodating. The food was perfect -- special but not too fancy. Our entrees included beef wellington, steamed mussels and red wine chicken coq au vin. Desserts included chocolate mousse, creme brulee and a cheese plate. Katie was adventurous enough to sample her daddy's blue cheese and discovered she doesn't like veined cheese.
After more than two hours, a little wine, a lot of food and great company, we headed back to our temporary home. Cooper got out of the cab and raced for the revolving door. Katie raced behind him. Only her fingers made it in the door, and then they were stuck! The doorman was quick to rush over, and together he and I pulled the door back and set her hands free. She was understandably scared but not injured, and we avoided revolving doors the rest of the trip.
For more photos from the day, click here.
Coming next: Day 3 report
Saturday, April 26, 2008
Chicago, Day 1
Six of us left D/FW last Friday for Chicago -- Steve, Cooper, Katie, me and Jim and Betty. We were especially thankful that American Airlines had resumed regular service that week, as we were flying on an MD-80. Uncle Jim had flown in from Houston the night before and met us at O'Hare.
We split up after claiming our bags. Steve and his parents took a cab downtown, and the kids, Uncle Jim and I hopped on the train. The taxi beat us by about an hour (we had a transfer and a few blocks of walking), but Cooper and Katie loved the train experience. When we stepped out of the underground station and Cooper saw the city streets, he instantly brightened. "I love Chicago," he gushed. He has always loved big cities -- New York, Boston, San Francisco, Philadelphia, D.C. I expect, when given the chance, he'll eventually ditch suburban life.
We regrouped at the hotel (the Courtyard Marriott off Michigan Avenue, on Ontario Street), and then headed out for a late lunch. About a block away was the West Egg Cafe, which I had read about earlier. (For those readers who don't know me well, I'll tell you now -- I love planning a vacation almost as much as taking a vacation.)
The West Egg is where Katie discovered her signature Chicago meal -- strawberry banana pancakes. She ate them every day we were in the city!
Then we split up -- Betty and Steve returned to the hotel, and the rest of us took a cab to the Navy Pier. We spent about two hours at the Chicago Children's Museum, which is now definitely in our top 3 children's museums. (The other two are probably in Milwaukee and Philly, though the Lakeland, Fla., one is a contender, too.) The museum successfully appealed to both Katie's and Cooper's age group. They both loved the water room, which offered opportunities to build dams, operate locks, pump water, float boats, build pipes and more.
As the museum was closing, we left for the giant ferris wheel, which offers great views of Lake Michigan and the downtown skyline.
We returned to the hotel to rest. Jim, Betty and Jim went to see Wicked that night, and Steve, the kids and I walked a few blocks to dinner. We found the Mity Nice Grill, at the back of a fancy shopping mall, and settled in. We were all tired from the day, but Cooper seemed the most exhausted. He barely touched his meal and was falling asleep in the booth. Not even the prospect of dessert would rouse him, so we went straight back to the hotel and put the kids down for the night.
And then I had a minor breakdown. Normally when Steve and I travel to a city, he ventures out before our bedtime and comes back with a surprise dessert. Well, he can't do that now. He's not stable enough to walk alone in our quiet, familiar neighborhood, much less a relatively unknown, crowded city. And that's when I started to cry.
At home, we've adapted to our new living-with-cancer routine. And going out of town would be different, I knew, than any other time we'd been out of town together. But no amount of planning had prepared me for how sad I would feel at that moment when I realized that even minor details of our vacation rituals would change.
And then I felt selfish for feeling sorry for myself and for wanting "old Steve" back. I mean, honestly -- I don't have a tumor in my brain stem. I'm not the one who is confined to the room unless someone goes with me. I should be grateful (and I was, really, just not at that exact moment) that we were together as a family, that we were celebrating Steve's progress -- not greedy for what life used to be like. And all those thoughts made me feel worse. And it was my birthday. (Natalie, a friend whose daughter is undergoing chemotherapy for optic gliomas, calls it a "how the heck did we get here" moment.)
I pulled myself together, left the hotel and wandered the city streets in search of dessert. I eventually found a wonderful, individually sized cherry pie with white chocolate mousse and ate it in our room. (Steve couldn't eat anything that late, as he was close to taking his chemotherapy. He has to wait two hours after eating before he can take the anti-nausea medicine and another 30 minutes before the chemo.)
Steve and I talked about it all, and we agreed that we just hate the Damm Spot. I am especially thankful that we can talk with each other about our moments of melancholy and that we support each other through these minor crises and much larger ones.
For more photos from our first day, click here.
Coming next: Day 2 report (and no crying, at least by me!)
Friday, April 25, 2008
Wobbly
Steve's left side is weakening again. He's been on 4 mg of Decadron for a while. Dr. M told us we could regulate the steroid as needed. The hope was that he would drop down, but we've decided he needs to increase instead. He took 5 mg yesterday. Today's unsteadiness (and fatigue) was worse than yesterday, so he took 6 mg today. We hope he can hold steady at 6 throughout the weekend and drop down again.
He worked from home today -- the sofa was his "office." Isn't technology great? When his work day was over, we walked across the street for "happy hour" -- an impromptu gathering of neighbors on the Dube driveway.
Yesterday we met with Dr. A, the radiation oncologist at UT-SW. We've grown accustomed to his unusual bedside manner and look forward to his appointments. Of the three doctors we've seen who've read the recent MRI images, he's the least cheerful about the results. But that's expected. There's a tension between radiation oncology and oncology. Radiation folks want to wait three months post-treatment for a scan. Oncology wants a scan sooner. So did we! Dr. A will be more confident in a prognosis based on the next MRI, scheduled for late May.
He worked from home today -- the sofa was his "office." Isn't technology great? When his work day was over, we walked across the street for "happy hour" -- an impromptu gathering of neighbors on the Dube driveway.
Yesterday we met with Dr. A, the radiation oncologist at UT-SW. We've grown accustomed to his unusual bedside manner and look forward to his appointments. Of the three doctors we've seen who've read the recent MRI images, he's the least cheerful about the results. But that's expected. There's a tension between radiation oncology and oncology. Radiation folks want to wait three months post-treatment for a scan. Oncology wants a scan sooner. So did we! Dr. A will be more confident in a prognosis based on the next MRI, scheduled for late May.
Thursday, April 24, 2008
Cooper's version
The day we returned from Chicago, Cooper dictated a letter to his teacher, Mrs. Brinlee, describing some of the highlights of our vacation:
April 21, 2008
Dear Mrs. Brinlee,
I just went to Chicago.
I saw “Wicked.” It was fantastic! It was so fantastic because of how they acted. I liked the way they made the monkeys fly and how the actors talked, sang and danced. “Wicked” is about a girl who is green, and people don’t really like her.
Another thing I did in Chicago was go to the top of the John Hancock building. The John Hancock building was so fun because you can see outside in a telescope. There are 96 floors. I could see Michigan, Illinois, Indiana and Wisconsin all at the same time.
We went to the Museum of Science and Industry and the Children’s Museum. My favorite part of the science museum was seeing the U-505. The U-505 is a submarine from the Navy. What I liked about the Children’s Museum was using my imagination to build a big skyscraper.
And I’m very, very glad to be home.
Sincerely,
Cooper Damm
April 21, 2008
Dear Mrs. Brinlee,
I just went to Chicago.
I saw “Wicked.” It was fantastic! It was so fantastic because of how they acted. I liked the way they made the monkeys fly and how the actors talked, sang and danced. “Wicked” is about a girl who is green, and people don’t really like her.
Another thing I did in Chicago was go to the top of the John Hancock building. The John Hancock building was so fun because you can see outside in a telescope. There are 96 floors. I could see Michigan, Illinois, Indiana and Wisconsin all at the same time.
We went to the Museum of Science and Industry and the Children’s Museum. My favorite part of the science museum was seeing the U-505. The U-505 is a submarine from the Navy. What I liked about the Children’s Museum was using my imagination to build a big skyscraper.
And I’m very, very glad to be home.
Sincerely,
Cooper Damm
Wednesday, April 23, 2008
Vacation photos
Here are some photos from our Chicago trip; actual narrative coming soon!
From the 94th floor of the John Hancock Center
Cooper and Uncle Jim at our celebratory dinner Saturday night
On the way into Wicked, which Cooper described as "fantastic"
Riding the ferris wheel at Navy Pier Monday, April 21, 2008
We're home!
We landed at D/FW about 3 p.m. today. Chicago was great. We're all tired. I'll post more later.
(Steve completed his second round of chemotherapy last night. No nausea all week. Yay!)
(Steve completed his second round of chemotherapy last night. No nausea all week. Yay!)
Thursday, April 17, 2008
Wild West
In August last year, Steve was one of a dozen adventurous runners who banded together to run in the Wild West Relay. They traveled from Fort Collins, Colo., to Springboat Springs, Colo. Together they ran 195 miles, taking turns while two others drove vans along the course.
Steve joined the team because Will was running. (Will and Steve went to high school together. Will and I went to college together. Will introduced us in spring 1992. As Steve likes to joke, it's Will's fault that we're together.) Will was running because his cousin Blair and Blair's wife, Kat, were putting the team together.
So Steve trained last summer. He stepped up his running routine. And when Layne's cousin from Colorado warned us of altitude sickness, Steve even cut out caffeine altogether to increase his chances of faring well. (After hearing Layne's cousin's stories, I stepped up my worrying routine.)
The team did well. They finished, which I think is quite a feat, and they bonded over movies, bad food and other experiences that I don't think they've fully shared with anyone who wasn't in one of those two vans.
Will stopped by this week with a thoughtful gift from the team -- a framed and matted photo of the runners (minus one) and a generous gift card to Sprouts, where we buy all kinds of cancer-fighting juices, teas and nutrients, plus a check for other expenses.
Looking at that photo stirs a lot of emotions. It's a stark reminder of how quickly life can change, how you can be in the best shape of your life and yet have no idea what your body has in store for you. We leave early tomorrow for Chicago. We're going to celebrate Steve's progress so far and create all kinds of good memories.
(Pardon the bad reproduction -- I just took a photo of the photo)
Tuesday, April 15, 2008
Smooth night
Steve began his second round of chemotherapy last night. He slept well and experienced no nausea, even on the doubled dose.
Friday, April 11, 2008
Go, Todd, go!
One of Uncle Jim's friends, Todd O'Neal, is participating in the Ironman Triathlon in Tempe, Ariz., on Sunday and is running on behalf of Steve! He will swim for 2.4 miles, bike for 112 biles and run for 26.2 miles. His goal is to finish in under 12 hours. Good luck, Todd!
Wednesday, April 9, 2008
A more optimistic perspective
Today was Steve's follow-up visit at UT-SW. He had another MRI, more blood drawn (it took multiple sticks to get a good sample -- his veins are usually difficult but especially so now after so many recent sticks and cancer-related treatment) and a lengthy visit with Dr. M, his Dallas neuro-oncologist.
Dr. C in Houston was cautiously optimistic, which matches his general demeanor. Dr. M was much more enthusiastic, which also matches her personality and approach. She believes that the tumor may be dying altogether, that the image we see on the scan may be dying cancer cells. That, of course, is over-the-top, unexpected great news -- if it's true. We are slightly puzzled, though, about what to do with her reading. It's much more optimistic than Dr. C's analysis, which indicated cell death in the middle of the tumor and the remote possibility of the tumor shrinking over time.
One reason we are letting M.D. Anderson direct care is because of our comfort level with their aggressive approach. Their doctors seem more proactive from the outset. For instance, adding Accutane to the Temodar so early in treatment isn't routinely prescribed at UT-SW. Dr. M seemed surprised that Dr. C recommended the double dose of Temodar and the seven days on, seven days off approach and said that that was more aggressive than she would have prescribed.
All of that is background to explain why we're having trouble reconciling Dr. M's reading with Dr. C's reading. We trust Dr. C's plan of action, therefore we tend to trust his reading. But Dr. M's analysis is better news, and who doesn't want to latch onto and celebrate that? As we're learning throughout this process, there is seldom a definite answer to any one question. We both have faith, though, that this journey has a purpose.
As Steve has stepped down on the Decadron the past few days (down to 2 mg), his gait, left-side funtion and voice have suffered once again. He's returning to 4 mg today and will stick with that for a week, then drop to 3 mg and hold there for at least a couple of weeks. As the brain is healing, Dr. M explained, it's dealing with a lot of extra debris that continues to cause swelling-related symptoms. That could take months to resolve, so Steve may continue his love-hate relationship with the drug that allows him to function but also weakens his muscles and adds some extra padding to his face, neck and belly.
He hasn't taken Tylenol since Friday! The Diamox, which is supposed to reduce the production of spinal column fluid and the pain in the back of his head, seems to be working. His head pain is at a 1-2 on a scale of 1 to 10, which he considers manageable.
Our awesome health insurance approved Provigil (the energy booster) right away, so we paid $50 for a month's supply. We hope that good luck continues next month. He's been taking it since Tuesday and has noticed a slight improvement in his fatigue level. He's confident that will continue to improve.
Steve will begin taking the next round of Temodar (with all its Dr. C-prescribed additions) and the first round of Accutane (five times the dose normally prescribed for acne) on Monday. Once again, our amazing support group has come through, this time with all kinds of suggestions on combating dry skin related to Accutane.
Recap:
Dr. C in Houston was cautiously optimistic, which matches his general demeanor. Dr. M was much more enthusiastic, which also matches her personality and approach. She believes that the tumor may be dying altogether, that the image we see on the scan may be dying cancer cells. That, of course, is over-the-top, unexpected great news -- if it's true. We are slightly puzzled, though, about what to do with her reading. It's much more optimistic than Dr. C's analysis, which indicated cell death in the middle of the tumor and the remote possibility of the tumor shrinking over time.
One reason we are letting M.D. Anderson direct care is because of our comfort level with their aggressive approach. Their doctors seem more proactive from the outset. For instance, adding Accutane to the Temodar so early in treatment isn't routinely prescribed at UT-SW. Dr. M seemed surprised that Dr. C recommended the double dose of Temodar and the seven days on, seven days off approach and said that that was more aggressive than she would have prescribed.
All of that is background to explain why we're having trouble reconciling Dr. M's reading with Dr. C's reading. We trust Dr. C's plan of action, therefore we tend to trust his reading. But Dr. M's analysis is better news, and who doesn't want to latch onto and celebrate that? As we're learning throughout this process, there is seldom a definite answer to any one question. We both have faith, though, that this journey has a purpose.
As Steve has stepped down on the Decadron the past few days (down to 2 mg), his gait, left-side funtion and voice have suffered once again. He's returning to 4 mg today and will stick with that for a week, then drop to 3 mg and hold there for at least a couple of weeks. As the brain is healing, Dr. M explained, it's dealing with a lot of extra debris that continues to cause swelling-related symptoms. That could take months to resolve, so Steve may continue his love-hate relationship with the drug that allows him to function but also weakens his muscles and adds some extra padding to his face, neck and belly.
He hasn't taken Tylenol since Friday! The Diamox, which is supposed to reduce the production of spinal column fluid and the pain in the back of his head, seems to be working. His head pain is at a 1-2 on a scale of 1 to 10, which he considers manageable.
Our awesome health insurance approved Provigil (the energy booster) right away, so we paid $50 for a month's supply. We hope that good luck continues next month. He's been taking it since Tuesday and has noticed a slight improvement in his fatigue level. He's confident that will continue to improve.
Steve will begin taking the next round of Temodar (with all its Dr. C-prescribed additions) and the first round of Accutane (five times the dose normally prescribed for acne) on Monday. Once again, our amazing support group has come through, this time with all kinds of suggestions on combating dry skin related to Accutane.
Recap:
- Dr. M believes the whole tumor may be dying.
- We love that news and yet struggle to reconcile her analysis with Dr. C's.
- Steve's swelling-related symptoms are back, so he's increasing the Decadron again -- 4 mg daily.
- Temodar and Accutane (plus some other drugs) begin their work on Monday.
Friday, April 4, 2008
A million things that you and I can do
"There is hope! Finally, hope!
And no, this isn't over
No, we aren't through!
No, there's still a million things that you and I can do!"
(Lyrics from the Broadway musical Parade)
Just after we took flight this afternoon to leave the Houston area, I pulled out my iPod Shuffle. The first song was "This Is Not Over Yet," from the Parade soundtrack. Steve and I saw the musical about seven years ago, when I was pregnant with Cooper. We both love the story and the music.
The main character sings the song when he learns that he has a reprieve from the death sentence for a crime he didn't commit. He and his wife are celebrating their extended time together.
I found special meaning in the song after our visit at M.D. Anderson today. The news was about as good as we could get.
The MRI scans show that the tumor is about the same size as in January. It didn't grow! And there is necrosis -- a cluster of dead cells -- in the middle of the tumor. Water has filled in that spot. (New brain cells won't grow there.) Dr. C says there's no way to know if it was the radiation therapy or chemotherapy or both that punched the hole through the tumor. In addition, there is less edema (swelling) around the tumor now as compared to January.
Dr. C was optimistic about the treatment so far and has recommended some additional tools to fight the Damm Spot. Dr. C's plan is designed to keep the tumor at its current size -- making it smaller would be an added bonus. (But don't let that stop you from praying that the tumor will altogether disappear!)
Chemotherapy
Next week Steve will again start taking Temodar, the oral chemotherapy. His dose will be twice as strong as his first round. He'll take it each night for seven days, then take seven days off. That cycle will continue for 12-18 months. With that, he'll continue to take Zofran to fight nausea, an anti-pneumonia drug and an anti-malaria drug, which may help deter cancer cell growth because of its antimutagenic properties.
Accutane
Steve will also start taking a high dose of Accutane, usually prescribed for acne. Accutane in high doses somehow turns off and on whole sets of genes in tumor cells and makes those cells behave more normally. It can be effective in working against cancer stem cells, which are resistant to chemotherapy and radiation, taking away their leadership qualities or "stemness," as Dr. C says.
We learned the possible risks of Accutane, including extremely dry skin, lips and mouth; pancreas and liver problems; increased triglycerides; and depression. Steve will need to moisturize from head to toe every day and stay covered in the sun. (If you suffer from dry skin and have a recommendation of a lotion or moisturizer that works for you, please let us know!) He'll also have his blood checked monthly for internal changes.
Diamox
Steve has been taking acetaminophen almost nonstop since November to address the headache at the back of his head. Dr. C suggested he try Diamox, which can reduce the production of spinal column fluid and may reduce some of the pressure he feels on the back of his head. If it works, Steve may be able to give the Tylenol a rest for a while.
Provigil
This drug is prescribed for patients with narcolepsy or sleep apnea. It could also help Steve fight the fatigue that he's been struggling with. This is an off-label use that insurance companies aren't willing to finance; the drug costs $360 for a month's supply. A 2006 study showed that it dramatically improved quality of life for brain cancer patients. We don't have high hopes that our insurance will cover an off-label use for quality of life purposes.
In addition to blood work and an MRI, Steve discussed with Dr. C and his nurse his current symptoms, including:
Double vision
His right eye doesn't function as it should, so he has double vision to the right and straight ahead. Dr. C is not hopeful that this will ever repair.
Left-side weakness
As Steve is again backing off the Decadron (down to 2 mg daily), he's noticing some left-side weakness again. It would be best if he's off the Decadron altogether, but he may need to stay on a low dose to retain functionality.
Taste changes
Sweets no longer taste good. This is probably because of the chemotherapy and/or radiation. I think it's his body's way of reminding him to avoid sugar -- tumors love sugar.
Swallowing
Steve still has no gag reflex, which keeps him at an increased risk of aspiration. He must continue to thicken liquids for safety.
We'll meet with Steve's neuro-oncologist in Dallas this week to review the M.D. Anderson plan and establish routines for checking blood counts and other vital signs. (Dr. M here frequently works with Dr. C there via phone and e-mail.) The next MRI will be in about eight weeks.
As we were landing in Addison this afternoon, at the end of a smooth flight, another special song started on my iPod. It was our first-dance song at our wedding, almost 14 years ago. (We will both tell you it's much too long to be a first-dance song!) It makes us both weepy and happy at that same time. It makes us want to dance in the kitchen or family room or wherever we are when we hear it. I shared my headphones with Steve, and we held hands until it was time to leave the plane.
"Was there life before this love
Was there love before this girl I can see
Was there ever love for her before me"
...
You can count on me to stand and say
'Was there ever life before this wonderful day?' "
(from Pete Townshend's "Was There Life")
Quickly
We're headed back to the Sugar Land airport.
Dr. C was guardedly pleased with the damage done by the chemo and radiation. The Damm Spot is about the same size as in January, which is good news if you consider it could have grown. Even better is the hole in the middle of the tumor, now filled in with water instead of cancerous cells.
Steve is surprised by the news, as he was braced for the worst. His spirits are good.
I'll update more when we get home. Thanks for checking on Steve!
Dr. C was guardedly pleased with the damage done by the chemo and radiation. The Damm Spot is about the same size as in January, which is good news if you consider it could have grown. Even better is the hole in the middle of the tumor, now filled in with water instead of cancerous cells.
Steve is surprised by the news, as he was braced for the worst. His spirits are good.
I'll update more when we get home. Thanks for checking on Steve!
Updates to come
Good morning! We arrived safely in Sugar Land yesterday afternoon. Sally gracefully steered us through windy conditions. She said it was one of the bumpiest flights in her flying history. It was definitely the bumpiest flight in my history! My stomach recovered a few hours later. Steve wasn't phased. He held my hand for more than an hour and constantly reassured me that we'd be OK.
Jim picked us up, checked us in to the M.D. Anderson hotel and took us to the movies and dinner. We also stopped at the House of Pies -- a Houston institution devoted to 40 kinds of pie! A tour bus of sweet older ladies (we think they were members of the Red Hat Society) arrived just moments before us, so we had at least half an hour to choose a flavor (Washington cherry for Steve, French silk for me, strawberry rhubarb for Jim).
We'll walk over to the clinic for Steve's first appointment soon and update later this afternoon, after we meet with Steve's oncologist.
Jim picked us up, checked us in to the M.D. Anderson hotel and took us to the movies and dinner. We also stopped at the House of Pies -- a Houston institution devoted to 40 kinds of pie! A tour bus of sweet older ladies (we think they were members of the Red Hat Society) arrived just moments before us, so we had at least half an hour to choose a flavor (Washington cherry for Steve, French silk for me, strawberry rhubarb for Jim).
We'll walk over to the clinic for Steve's first appointment soon and update later this afternoon, after we meet with Steve's oncologist.
Wednesday, April 2, 2008
Headed to Houston
Sally will fly Steve and me to Houston early Thursday afternoon. His appointments are at 10 a.m., 11 a.m. and 1 p.m. Friday. At the 1 o'clock appointment, we'll learn the results of the MRI and talk about next steps with the oncologist. We plan on flying back to Dallas Friday afternoon.
Aunt Ami has been here all week, helping me with projects and everyday life around the house. Her timing was perfect -- both Cooper and Katie have strep throat, and we definitely needed an extra mom to help with doctor appointments, pharmacy visits, cuddling, child-entertaining. She'll stay here while Steve and I are gone.
We so appreciate all of your good wishes and prayers as we take these next steps in Steve's journey to healing. I want to share an excerpt from our dear friend Jackie's blog. She and Sydney (her daughter and our goddaughter) have lived in Shanghai since June 2007. They spent last weekend in Hangzhou, China, and visited Lingyin Temple (Temple of Soul's Retreat).
Aunt Ami has been here all week, helping me with projects and everyday life around the house. Her timing was perfect -- both Cooper and Katie have strep throat, and we definitely needed an extra mom to help with doctor appointments, pharmacy visits, cuddling, child-entertaining. She'll stay here while Steve and I are gone.
We so appreciate all of your good wishes and prayers as we take these next steps in Steve's journey to healing. I want to share an excerpt from our dear friend Jackie's blog. She and Sydney (her daughter and our goddaughter) have lived in Shanghai since June 2007. They spent last weekend in Hangzhou, China, and visited Lingyin Temple (Temple of Soul's Retreat).
We also took a moment to burn incense and say a prayer as it was a Buddhist temple. Mine was for the speedy recovery of Sydney's Godfather, Steve, who we love and admire more and more everyday. There was also a room filled with dozens of statutes and in the middle were large statutes of Buddha. Sydney watched other people kneel on the yellow pillow in front of the large statutes and placed their head in their hands in prayer. Sydney insisted on getting out of her stroller and knelt down on the yellow pillow and said her own prayer. It was just so sweet.
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