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!
Friday, May 30, 2008
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.
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