Saturday, March 29, 2008
Thursday, March 27, 2008
Questions and answers
This morning at breakfast, for seemingly no reason, Cooper finally asked what kind of sickness Daddy has.
We gave him simple answers. We told him that Steve has brain cancer. That the tumor in his brain stem, which is deep in the brain, is made up of bad cells and that the doctors are working to get rid of the cells. That the tumor is what causes Steve to feel tired, to not be able to walk well, to not be able to see well.
He asked if the tumor would cause Daddy to not be able to learn new things. We told him that we were thankful that this kind of tumor doesn't affect his ability to think or learn. As Steve was talking, he was crying a little. Cooper held his hand while Katie hurried from the table to get him a tissue. (Katie is particular about tears. They must be wiped away quickly.)
The conversation was brief. Cooper remembered that Jogging Club (an early morning school activity) was about to begin, so he excused himself from the table and ran to his room to get ready. He's in excellent spirits this afternoon.
We gave him simple answers. We told him that Steve has brain cancer. That the tumor in his brain stem, which is deep in the brain, is made up of bad cells and that the doctors are working to get rid of the cells. That the tumor is what causes Steve to feel tired, to not be able to walk well, to not be able to see well.
He asked if the tumor would cause Daddy to not be able to learn new things. We told him that we were thankful that this kind of tumor doesn't affect his ability to think or learn. As Steve was talking, he was crying a little. Cooper held his hand while Katie hurried from the table to get him a tissue. (Katie is particular about tears. They must be wiped away quickly.)
The conversation was brief. Cooper remembered that Jogging Club (an early morning school activity) was about to begin, so he excused himself from the table and ran to his room to get ready. He's in excellent spirits this afternoon.
Wednesday, March 26, 2008
Travel plans
After many weeks at home, it's time to start organizing for travel again. Late next week Steve and I will fly to Houston for follow-up appointments at M.D. Anderson. Steve will have blood drawn and checked and have MRI scans of his brain so we can see the chemotherapy and radiation therapy's good work.
A couple of weeks later, all four of us will travel to Chicago with Jim, Betty and Jim for a celebratory long weekend. Jim and Betty have wanted to treat us to a getaway to mark the end of Steve's radiation.
The kids and I have never been to Chicago, so we'll have lots to discover. If you have any suggestions of what can't be missed or what must be eaten, be sure to send tips along! We plan on visiting the Chicago Children's Museum, the Navy Pier and the Museum of Science and Industry. Steve and I hope to escape on our own for a tour of the Art Institute.
Steve continues to gain strength. He's been able to work long hours this week -- without a nap! We give great thanks for these strong "normal" days.
It's amazing how quickly the definition of "normal" changes. We feel years, not months, removed from our old, pre-cancer life -- when crises had a foreseeable end, when the source of exhaustion was too much work or play, when Steve was able to drive, wrestle with Cooper, lift Katie on his shoulders.
Steve and I strongly believe in making the best of any circumstance, in tackling a challenge with optimism and determination -- a value that's certainly been tested the past few months. We are so thankful for how countless friends, family members and even strangers have made it possible for us to realize the blessings despite Steve's many challenges.
A couple of weeks later, all four of us will travel to Chicago with Jim, Betty and Jim for a celebratory long weekend. Jim and Betty have wanted to treat us to a getaway to mark the end of Steve's radiation.
The kids and I have never been to Chicago, so we'll have lots to discover. If you have any suggestions of what can't be missed or what must be eaten, be sure to send tips along! We plan on visiting the Chicago Children's Museum, the Navy Pier and the Museum of Science and Industry. Steve and I hope to escape on our own for a tour of the Art Institute.
Steve continues to gain strength. He's been able to work long hours this week -- without a nap! We give great thanks for these strong "normal" days.
It's amazing how quickly the definition of "normal" changes. We feel years, not months, removed from our old, pre-cancer life -- when crises had a foreseeable end, when the source of exhaustion was too much work or play, when Steve was able to drive, wrestle with Cooper, lift Katie on his shoulders.
Steve and I strongly believe in making the best of any circumstance, in tackling a challenge with optimism and determination -- a value that's certainly been tested the past few months. We are so thankful for how countless friends, family members and even strangers have made it possible for us to realize the blessings despite Steve's many challenges.
Saturday, March 22, 2008
Easter Eve
Steve napped and rested most of the day to store up strength to attend our church's annual egg hunt. The weather was beautiful today, perfect for hunting eggs and flying kites. We loved having Uncle Jim with us, too!
Steve reports that his left side is stronger today than yesterday. He loved the many jokes and funny stories you all sent this week. Thank you!
Friday, March 21, 2008
Improvement already
After just a one day back on 4 mg of Decadron, Steve already notices signs of improvement. He was able to wash his hair and put on his socks much more easily this morning. And his gait is steadier. He'll remain on this dose for a week, and then we'll talk with his radiation oncologist again.
Thursday, March 20, 2008
Change in steroid plans
Today was supposed to be Steve's last day on Decadron, the steroid he's been taking since January to address the swelling in his brain around the tumor. It's not an ideal drug to take long term, as it causes all sorts of problems (including susceptibility to infection, ulcers, insomnia, change in muscle mass and fat storage) while it's taking care of the edema.
But as he's stepped down the Decadron dose (now down to 1 mg every other day), some of his neurological symptoms have returned. His left side is especially sluggish, causing fine motor and gross motor problems. For example, he struggles with buttoning his dress shirts and has been wobbly when walking.
After speaking with his UT-SW doctors, he's back on a higher dose of Decadron for a week. He'll take 4 mg a day, and we'll look for improved symptoms. Our prayer is the symptoms are resolved, which would indicate swelling is the culprit, not the tumor.
But as he's stepped down the Decadron dose (now down to 1 mg every other day), some of his neurological symptoms have returned. His left side is especially sluggish, causing fine motor and gross motor problems. For example, he struggles with buttoning his dress shirts and has been wobbly when walking.
After speaking with his UT-SW doctors, he's back on a higher dose of Decadron for a week. He'll take 4 mg a day, and we'll look for improved symptoms. Our prayer is the symptoms are resolved, which would indicate swelling is the culprit, not the tumor.
Wednesday, March 19, 2008
Good news
Steve saw his primary care physician today. Dr. T wanted to follow-up after Steve's recent upper respiratory infection. Dr. T says that Steve's lungs are completely clear. And vital signs showed his blood-oxygen level is back to 100 percent!
Sunday, March 16, 2008
Update
Graduation
Steve graduated from radiation therapy on Tuesday! Everyone on staff congratulated him that day -- the valet parkers, the receptionists, the nurses, the techs and the doctors. The techs, who strapped him into the mask and onto the table and administered the X-rays every day, gave him a certificate and let him take home the mask. (It's a plastic/nylon mask custom-designed for his face and head. He would fit his head in the mask, and then the mask was bolted to the table for treatment.)
That same night was his last night of chemotherapy for a few weeks. For now, he's been able to drop a number of drugs -- Temodar (chemo), Zofran (for nausea), Dapsone (to prevent pneumonia) and Chloroquine (anti-malaria drug that the M.D. Anderson oncologist recommends along with Temodar). He'll start that regimen again in a few weeks. He'll take those drugs for seven days and take 21 days off for 12-18 months.
Next trip to Houston
His next scheduled appointment is April 4 at M.D. Anderson. He'll have blood drawn and tested, have an MRI and meet with Dr. C, his oncologist.
The MRI will show the progress so far. Dr. A, the radiation oncologist, has warned us multiple times that this MRI will be messy and may look worse than the January MRI. The radiation continues to work long after the last X-ray was pointed at Steve's brain stem. And there's a lot of repair work taking place. But oncology likes an earlier-rather-than-later scan to get an idea of what we're working with.
The April 4 scan will be a baseline. A recurrence will be defined as (1) any new growth on the original tumor and/or (2) new tumors in the brain. Brain tumors are just awful. They spin off their evil cells. Those cells hide out in the brain. Sometimes they form new tumors. The continued chemotherapy should fight those sneaky cells, but chemo isn't always successful.
A recurrence could be treated with other drugs Steve hasn't yet used. Or he could be eligible for a trial. But there will be no more radiation therapy.
Steroid slowdown
This is also the week he's weaning off the Decadron. Yesterday he took none. Today he took 1 mg. He continues that pattern for four more days, and then he's off the steroid altogether.
Symptoms
Overall, Steve is still doing pretty well. But there are symptoms that we can't ignore. His fatigue is debilitating. There were two days this week when he really struggled to wake up and get out of bed. His body, especially his left side, is sluggish. His headaches are much stronger. His stomach is acidic, and his appetite has declined. He's managing to walk, work and read with double vision. Sometimes he's frustrated by it all -- like when he missed last night's soccer game and Cooper's second goal of the season. Most of the time, he's cheerful and hopeful and continues to make himself and us laugh
Steve graduated from radiation therapy on Tuesday! Everyone on staff congratulated him that day -- the valet parkers, the receptionists, the nurses, the techs and the doctors. The techs, who strapped him into the mask and onto the table and administered the X-rays every day, gave him a certificate and let him take home the mask. (It's a plastic/nylon mask custom-designed for his face and head. He would fit his head in the mask, and then the mask was bolted to the table for treatment.)
That same night was his last night of chemotherapy for a few weeks. For now, he's been able to drop a number of drugs -- Temodar (chemo), Zofran (for nausea), Dapsone (to prevent pneumonia) and Chloroquine (anti-malaria drug that the M.D. Anderson oncologist recommends along with Temodar). He'll start that regimen again in a few weeks. He'll take those drugs for seven days and take 21 days off for 12-18 months.
Next trip to Houston
His next scheduled appointment is April 4 at M.D. Anderson. He'll have blood drawn and tested, have an MRI and meet with Dr. C, his oncologist.
The MRI will show the progress so far. Dr. A, the radiation oncologist, has warned us multiple times that this MRI will be messy and may look worse than the January MRI. The radiation continues to work long after the last X-ray was pointed at Steve's brain stem. And there's a lot of repair work taking place. But oncology likes an earlier-rather-than-later scan to get an idea of what we're working with.
The April 4 scan will be a baseline. A recurrence will be defined as (1) any new growth on the original tumor and/or (2) new tumors in the brain. Brain tumors are just awful. They spin off their evil cells. Those cells hide out in the brain. Sometimes they form new tumors. The continued chemotherapy should fight those sneaky cells, but chemo isn't always successful.
A recurrence could be treated with other drugs Steve hasn't yet used. Or he could be eligible for a trial. But there will be no more radiation therapy.
Steroid slowdown
This is also the week he's weaning off the Decadron. Yesterday he took none. Today he took 1 mg. He continues that pattern for four more days, and then he's off the steroid altogether.
Symptoms
Overall, Steve is still doing pretty well. But there are symptoms that we can't ignore. His fatigue is debilitating. There were two days this week when he really struggled to wake up and get out of bed. His body, especially his left side, is sluggish. His headaches are much stronger. His stomach is acidic, and his appetite has declined. He's managing to walk, work and read with double vision. Sometimes he's frustrated by it all -- like when he missed last night's soccer game and Cooper's second goal of the season. Most of the time, he's cheerful and hopeful and continues to make himself and us laugh
Tuesday, March 11, 2008
Last day of radiation therapy
Today will be Steve's final day of radiation therapy and the last day of this first round of chemotherapy.
The radiation oncologists did not add on to the total days, but he did miss treatment last Thursday, when the weather turned snowy and the roads were packed with nervous drivers. This nervous wife called off treatment for the day, extending the treatment plan to today.
Dr. G, the resident, explained to Steve that this final treatment will hit the maximum tolerance recommended for the areas they're targeting. He also learned that they've avoided shooting X-rays through his ear in order to save his hearing -- very thoughtful! You can see where the X-rays have entered, as there are cute little bald spots surrounding his ears.
Steve is having a rough day. He's normally up and out of bed by 6 a.m. His body just wouldn't cooperate today, so he's staying in bed until we have to leave for treatment. He says his body feels extremely heavy, as if he's filled with sand. And his headache is excruciatingly painful today. We're not sure if it's accumulated fatigue, which has been catching up with him the past few days, or the reduced dose of Decadron, which dropped to 1 mg yesterday. It's probably a bit of both.
When I took Cooper to school this morning, he told me he never wants me to break the law. I told him I already try not to (well, except for driving a bit over the speed limit, which he admonishes me for frequently) and asked why he was worried. He answered that there would be no one to take care of Daddy if I was in jail and that Daddy would have trouble taking care of him and Katie. I promised to do nothing that would land me in jail. We talked some more about his concerns, and then he had to walk into the building.
Steve was able to go to the regional Destination Imagination tournament on Saturday. Cooper and five of his first-grade friends performed their play in front of judges and a huge crowd of parents and siblings, completed an instant challenge and were recognized at a rousing awards ceremony that afternoon. The tournament was at Plano Senior High School, which I compare to a junior college campus -- multiple buildings are separated by courtyards, a pond and too many stairs for a guy who's having trouble walking. We were thrilled that Steve was able to attend and see what the team had been working on for months, but he was exhausted by the end of the day and spent most of Sunday recovering.
The radiation oncologists did not add on to the total days, but he did miss treatment last Thursday, when the weather turned snowy and the roads were packed with nervous drivers. This nervous wife called off treatment for the day, extending the treatment plan to today.
Dr. G, the resident, explained to Steve that this final treatment will hit the maximum tolerance recommended for the areas they're targeting. He also learned that they've avoided shooting X-rays through his ear in order to save his hearing -- very thoughtful! You can see where the X-rays have entered, as there are cute little bald spots surrounding his ears.
Steve is having a rough day. He's normally up and out of bed by 6 a.m. His body just wouldn't cooperate today, so he's staying in bed until we have to leave for treatment. He says his body feels extremely heavy, as if he's filled with sand. And his headache is excruciatingly painful today. We're not sure if it's accumulated fatigue, which has been catching up with him the past few days, or the reduced dose of Decadron, which dropped to 1 mg yesterday. It's probably a bit of both.
When I took Cooper to school this morning, he told me he never wants me to break the law. I told him I already try not to (well, except for driving a bit over the speed limit, which he admonishes me for frequently) and asked why he was worried. He answered that there would be no one to take care of Daddy if I was in jail and that Daddy would have trouble taking care of him and Katie. I promised to do nothing that would land me in jail. We talked some more about his concerns, and then he had to walk into the building.
Steve was able to go to the regional Destination Imagination tournament on Saturday. Cooper and five of his first-grade friends performed their play in front of judges and a huge crowd of parents and siblings, completed an instant challenge and were recognized at a rousing awards ceremony that afternoon. The tournament was at Plano Senior High School, which I compare to a junior college campus -- multiple buildings are separated by courtyards, a pond and too many stairs for a guy who's having trouble walking. We were thrilled that Steve was able to attend and see what the team had been working on for months, but he was exhausted by the end of the day and spent most of Sunday recovering.
At the DI tournament Saturday
This first round of fighting the Damm Spot has been made so much easier by countless folks. There's not a single need or request that has gone unanswered. We are surrounded by the world's best and most patient drivers, chefs, baby sitters, dish washers, hand holders, note writers, gift givers, prayer warriors, dog walkers, bakers, clothes folders, shoppers, teachers, coaches, co-workers, doctors, nurses, errand runners, listeners, huggers, singers, surprise arrangers! Thank you for easing the burden, showering us with love and reminding countless others that goodness and hope abound.
Tuesday, March 4, 2008
Countdown
Steve's last day of radiation treatment has been scheduled for Monday, March 10. We learned today that Dr. A is considering adding an extra day or two. (There are limits on treatment, and Steve's original schedule had the fewest number of possible days.) Dr. A will let us know by Friday his decision.
The last day of radiation will also be the last day of this round of chemotherapy. Then he'll take about a month off and start a new chemo schedule -- most likely seven days on, 21 days off.
His next scheduled MRI is April 4 at M.D. Anderson. We'll meet with Dr. C, our Houston oncologist, later that afternoon to learn the state of the tumor and next steps.
Folks continue to be amazed by how well Steve is doing. He's worked in the office the past two days. He's getting around relatively well, though he's not super steady on his feet. My protective (overprotective?) traits are tested often, and I frequently remind him to slow down a bit.
As with so many symptoms, we're not sure if his unsteadiness is related to the tumor and/or swelling or the effects of the steroid. His legs have lost so much muscle mass from weeks on the Decadron. He is continuing to step down the dose. The past week he's been on 4 mg per day. Today he dropped to 3 mg. He'll drop to 2 mg Friday and 1 mg Monday.
The tremors have improved. Last Friday may have been his worst shaky day (it was awful and scary for a few hours), but since then he's noticed fewer problems.
His blood oxygen level remains lower than ideal -- today it was 94% -- but no one seems concerned.
He's exhausted, worn out from radiation, chemo, emotional wear and tear and his body coping with so much so quickly. Importantly, though, his spirit isn't worn out.
His vision remains his most troubling symptom. The double vision just isn't improving. It's not getting in his way too much, though -- he continues to work, read books with Katie and Cooper (tonight included Click, Clack, Splish, Splash with Katie and Harry Potter and the Order of the Phoenix with Cooper), read on his own (he recently finished Wicked and Steve Martin's memoir, Born Standing Up) and watch movies and TV (tonight's primary results are keeping him up late). We give thanks every day that the awful Damm Spot has not stolen his cognitive abilities or sense of humor.
The last day of radiation will also be the last day of this round of chemotherapy. Then he'll take about a month off and start a new chemo schedule -- most likely seven days on, 21 days off.
His next scheduled MRI is April 4 at M.D. Anderson. We'll meet with Dr. C, our Houston oncologist, later that afternoon to learn the state of the tumor and next steps.
Folks continue to be amazed by how well Steve is doing. He's worked in the office the past two days. He's getting around relatively well, though he's not super steady on his feet. My protective (overprotective?) traits are tested often, and I frequently remind him to slow down a bit.
As with so many symptoms, we're not sure if his unsteadiness is related to the tumor and/or swelling or the effects of the steroid. His legs have lost so much muscle mass from weeks on the Decadron. He is continuing to step down the dose. The past week he's been on 4 mg per day. Today he dropped to 3 mg. He'll drop to 2 mg Friday and 1 mg Monday.
The tremors have improved. Last Friday may have been his worst shaky day (it was awful and scary for a few hours), but since then he's noticed fewer problems.
His blood oxygen level remains lower than ideal -- today it was 94% -- but no one seems concerned.
He's exhausted, worn out from radiation, chemo, emotional wear and tear and his body coping with so much so quickly. Importantly, though, his spirit isn't worn out.
His vision remains his most troubling symptom. The double vision just isn't improving. It's not getting in his way too much, though -- he continues to work, read books with Katie and Cooper (tonight included Click, Clack, Splish, Splash with Katie and Harry Potter and the Order of the Phoenix with Cooper), read on his own (he recently finished Wicked and Steve Martin's memoir, Born Standing Up) and watch movies and TV (tonight's primary results are keeping him up late). We give thanks every day that the awful Damm Spot has not stolen his cognitive abilities or sense of humor.
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