Steve made the transition today from three IV antibiotics to one oral antibiotic. He is also finished with IV fluids, and his oxygen rate has been lowered with success.
The blood cultures never grew anything, so we don't know exactly what we're fighting. The oral antibiotic covers a lot of germs, though.
Yesterday's X-ray doesn't look so bad. It shows scarring in the lower lungs but no big, hard-to-fight infiltrates.
The attending hematologist/oncologist, Dr. A, says that he thinks Steve could go home Monday. Dr. A won't be making that decision, though, because tomorrow is a new month, which means a new team rotates in.
So sometime Saturday we'll meet the new team and new attending, and they'll make the decision.
As much as I would like Steve home (with our Cooper and Katie -- oh, how we miss them!), I am thankful that we have a little more time here. We have both noticed that his shortness of breath is a little worse today than yesterday. He's having a little more difficulty talking, too. Still, he is so much better than when he arrived in the ER on Wednesday.
I'm hoping he can regain some physical strength -- at least to get him back to his level of Monday or Tuesday.
When I transfer him from one surface to another, he is usually able to help a great deal with his right side. He's lost some of that this week, plus his left side seems even more "dead" than usual. While we've been in the hospital, he's required two people for transfers.
We had a big switcheroo tonight. Sharon left the Morning News newsroom to take care of Cooper and Katie at Jim and Betty's house. Jim and Betty came to the hospital to spend time with Steve. And I went out with Liz and Kris for a lovely meal at S&D Oyster Co.
It is difficult for me to be out on a Friday night without my favorite date. But we brought Steve back some bread pudding with whiskey sauce. And now I get to spend another night in his hospital room, falling asleep to the sounds of him breathing (even snoring), giving thanks for his beautiful spirit.
Friday, July 31, 2009
Two advantages
At least two advantages to being at St. Paul:
1. We've been here so frequently that most of the faces are familiar. When I walk through the halls and see a nurse who Steve has had before, they always light up and ask about Steve. Yesterday the speech therapist from our last visit just popped in because she saw his name on the board and wanted to say hi.
Those moments make these visits more bearable.
2. The hospital bed here is wider than the one at home, which allows room for me to cuddle with Steve. At home there's barely room for Cooper or Katie to sidle up for a hug. But here I can pull Steve over to one side of the bed (using the draw sheet) and then climb in on the other side and wrap my arms around my sweetheart.
1. We've been here so frequently that most of the faces are familiar. When I walk through the halls and see a nurse who Steve has had before, they always light up and ask about Steve. Yesterday the speech therapist from our last visit just popped in because she saw his name on the board and wanted to say hi.
Those moments make these visits more bearable.
2. The hospital bed here is wider than the one at home, which allows room for me to cuddle with Steve. At home there's barely room for Cooper or Katie to sidle up for a hug. But here I can pull Steve over to one side of the bed (using the draw sheet) and then climb in on the other side and wrap my arms around my sweetheart.
Thursday, July 30, 2009
Morning update
The first night in the hospital is always the most interrupted.
Steve's prescriptions didn't arrive until midnight. Respiratory came sometime after to give him a breathing treatment. More blood was drawn. More meds at 6 a.m., when a really loud thunderstorm was beating against our window.
I think we got about four hours of pieced-together sleep each. Afternoon naps are definitely in order.
Steve seems about the same this morning as late last night -- less congestion, still short of breath but not as bad, able to talk (not long discussions, mind you, but a sentence is great!).
The internist who saw Steve in the ER yesterday just visited, and she was pleased with how much better he looks and sounds. And the respiratory therapist who also saw him in the ER remarked on Steve's improvement.
(Steve must have deteriorated quickly in the ambulance yesterday, on the trip from home to the hospital, because the respiratory therapist said everyone in the ER was prepared for a severe case.)
We'll now wait for cultures to come back. That will tell us what kind of pneumonia or infection Steve has and what specific drugs he needs. Until then, he'll continue on the broad-spectrum antibiotics.
We'll also pray for no other complications and the ability to return home the moment he's stable and ready.
Steve's prescriptions didn't arrive until midnight. Respiratory came sometime after to give him a breathing treatment. More blood was drawn. More meds at 6 a.m., when a really loud thunderstorm was beating against our window.
I think we got about four hours of pieced-together sleep each. Afternoon naps are definitely in order.
Steve seems about the same this morning as late last night -- less congestion, still short of breath but not as bad, able to talk (not long discussions, mind you, but a sentence is great!).
The internist who saw Steve in the ER yesterday just visited, and she was pleased with how much better he looks and sounds. And the respiratory therapist who also saw him in the ER remarked on Steve's improvement.
(Steve must have deteriorated quickly in the ambulance yesterday, on the trip from home to the hospital, because the respiratory therapist said everyone in the ER was prepared for a severe case.)
We'll now wait for cultures to come back. That will tell us what kind of pneumonia or infection Steve has and what specific drugs he needs. Until then, he'll continue on the broad-spectrum antibiotics.
We'll also pray for no other complications and the ability to return home the moment he's stable and ready.
Wednesday, July 29, 2009
In a room
Around 8:45 p.m. Steve was in a real hospital bed in a real hospital room. A few minutes later he was eating dinner (his first bite of food since breakfast) delivered by Sharon.
We're now waiting on the night RN to go over Steve's history and give him his nighttime meds. And then -- sleep!
The high dose of antibiotics seems to have had a positive effect. Steve has been able to clearly speak a complete sentence for the first time in about five days. He seems more alert as well and more Steve-like overall.
We look forward to more improvement tomorrow!
We're now waiting on the night RN to go over Steve's history and give him his nighttime meds. And then -- sleep!
The high dose of antibiotics seems to have had a positive effect. Steve has been able to clearly speak a complete sentence for the first time in about five days. He seems more alert as well and more Steve-like overall.
We look forward to more improvement tomorrow!
In the ER
Steve is at the St. Paul ER. He's being treated for probable pneumonia, most likely due to aspiration.
He started spiking a fever today. He was considerably weaker today than yesterday. The hospice nurse, who was visiting today to change his PICC line dressing, heard crackles in his lungs.
He called Dr. M, who recommended he be seen right away. I called 911 and then explained to Katie, who was home with us, that paramedics and firefighters would be coming soon. (I'll have to write about that experience later.)
The Frisco paramedics took care of him and brought him to St. Paul. I stayed with Katie until Betty and Cooper could arrive. (Cooper is in chess camp this week, at a school near Grandma and Papa.)
Sharon met Steve at the hospital and helped to take good care of him.
An X-ray here in the ER shows some trouble in the upper right lung. That, combined with his other symptoms, leads the doctors to believe that he has pneumonia.
He's receiving IV fluid and three strong IV antibiotics -- one after the other. We'll be heading to an upstairs room for admission sometime this afternoon.
As you pray for Steve and the medical team, please also include Cooper and Katie in your prayers today and the coming days. It was especially difficult to leave Cooper this afternoon, and I know they both are sad about Steve being gone again.
5:45 p.m. update: We're still waiting on a hospital room. Steve is sleeping. His congestion sounds awful, but his temperature seems to have dropped.
He started spiking a fever today. He was considerably weaker today than yesterday. The hospice nurse, who was visiting today to change his PICC line dressing, heard crackles in his lungs.
He called Dr. M, who recommended he be seen right away. I called 911 and then explained to Katie, who was home with us, that paramedics and firefighters would be coming soon. (I'll have to write about that experience later.)
The Frisco paramedics took care of him and brought him to St. Paul. I stayed with Katie until Betty and Cooper could arrive. (Cooper is in chess camp this week, at a school near Grandma and Papa.)
Sharon met Steve at the hospital and helped to take good care of him.
An X-ray here in the ER shows some trouble in the upper right lung. That, combined with his other symptoms, leads the doctors to believe that he has pneumonia.
He's receiving IV fluid and three strong IV antibiotics -- one after the other. We'll be heading to an upstairs room for admission sometime this afternoon.
As you pray for Steve and the medical team, please also include Cooper and Katie in your prayers today and the coming days. It was especially difficult to leave Cooper this afternoon, and I know they both are sad about Steve being gone again.
5:45 p.m. update: We're still waiting on a hospital room. Steve is sleeping. His congestion sounds awful, but his temperature seems to have dropped.
Sunday, July 26, 2009
Controlled fall
Steve's been struggling with increased weakness all over, shallow breathing, shallow coughing and weak voice this weekend.
This morning when it was time to help him walk (with his walker) from the bed to the bathroom, we had some trouble. It took him more tries than usual to stand up from the bed. The walk was slow and unsure. I had to provide more support than normal and move his left foot and leg the entire journey.
On the walk back to the bedroom, Steve's walker got too far ahead of his body. He didn't feel stable and said he needed to sit down. Well, I knew that that wasn't a great idea, but there was no arguing with his body, which was slowly moving to the floor.
I helped guide him to the floor and made him as comfortable as possible on the half tile, half carpeted area. Then we thought about what to do next.
There was no way I was going to be able to lift him from the floor myself, and there was no way he was going to be able to rise on his own. So I started making phone calls to as many of our nearby guy friends as possible.
Jason answered the call and scooped up Steve with seemingly little effort. I grabbed his feet, and we carried him to bed, where he's been ever since.
I spoke with D, our hospice social worker, to let him know about the controlled fall and to get advice.
It was a difficult conversation.
You may remember that D visited us just yesterday. He told me on the phone today that he is concerned with the weakness he sees in Steve compared with two weeks ago.
He said that, based on his experience, we've started a decline that isn't reversible. (D has been with our hospice group for about six months. Before this job, he was a social worker at UT-SW and worked directly with Dr. M and her patients.)
Steve is in bed most of the day. This is out of necessity. He's not stable enough or strong enough to be out of bed. When he sits in his wheelchair for a few hours one day, he's spent the next.
Being in bed most of the time makes him weaker. It makes it more difficult for his respiratory system to heal. It makes his breathing more shallow.
It's an awful cycle.
D wants us to be prepared for some rough weeks ahead.
It's frustrating that even though the Damm Spot is stable we've got these other battles to fight. Battles that aren't easy to win.
I feel just awful that I can't fix this. I ache for my Steve, who is still so full of life and charm and wit and spirit and love.
(Today, after Steve was back in bed, Julie was helping me adjust his position in bed. He wasn't wearing a shirt. "I'm too sexy for my shirt," he sang to Julie.)
I ache for Cooper and Katie. At the same time I'm so proud of how they adjust. Our bedroom has become the new family room. We spread a blanket on the floor between my bed and Steve's bed, and the kids have picnics right there, so they can eat next to Daddy.
My bed is the new reading spot. The three of us (often plus furry Margie) snuggle on my cozy twin bed while I read aloud (we're in the middle of On the Banks of Plum Creek). That way Steve gets to listen, too. Tonight we all watched a movie together, with Steve's oxygen machine providing ambient noise.
I ache for me and for us, too. My heart aches as I watch Steve struggle.
I can't tell you how many times in the last 17 years I've revisited our first date and first kiss in my mind. It literally takes my breath away.
That memory is even sweeter now.
We know how blessed we are to have found each other. We know we were meant for each other. That unbreakable love is what makes this whole experience so painful and so bearable at the same time.
We haven't given up hope or traded in optimism for pessimism. We will continue to fight as much as we can. Steve has always wowed us with his Superman qualities.
This morning when it was time to help him walk (with his walker) from the bed to the bathroom, we had some trouble. It took him more tries than usual to stand up from the bed. The walk was slow and unsure. I had to provide more support than normal and move his left foot and leg the entire journey.
On the walk back to the bedroom, Steve's walker got too far ahead of his body. He didn't feel stable and said he needed to sit down. Well, I knew that that wasn't a great idea, but there was no arguing with his body, which was slowly moving to the floor.
I helped guide him to the floor and made him as comfortable as possible on the half tile, half carpeted area. Then we thought about what to do next.
There was no way I was going to be able to lift him from the floor myself, and there was no way he was going to be able to rise on his own. So I started making phone calls to as many of our nearby guy friends as possible.
Jason answered the call and scooped up Steve with seemingly little effort. I grabbed his feet, and we carried him to bed, where he's been ever since.
I spoke with D, our hospice social worker, to let him know about the controlled fall and to get advice.
It was a difficult conversation.
You may remember that D visited us just yesterday. He told me on the phone today that he is concerned with the weakness he sees in Steve compared with two weeks ago.
He said that, based on his experience, we've started a decline that isn't reversible. (D has been with our hospice group for about six months. Before this job, he was a social worker at UT-SW and worked directly with Dr. M and her patients.)
Steve is in bed most of the day. This is out of necessity. He's not stable enough or strong enough to be out of bed. When he sits in his wheelchair for a few hours one day, he's spent the next.
Being in bed most of the time makes him weaker. It makes it more difficult for his respiratory system to heal. It makes his breathing more shallow.
It's an awful cycle.
D wants us to be prepared for some rough weeks ahead.
It's frustrating that even though the Damm Spot is stable we've got these other battles to fight. Battles that aren't easy to win.
I feel just awful that I can't fix this. I ache for my Steve, who is still so full of life and charm and wit and spirit and love.
(Today, after Steve was back in bed, Julie was helping me adjust his position in bed. He wasn't wearing a shirt. "I'm too sexy for my shirt," he sang to Julie.)
I ache for Cooper and Katie. At the same time I'm so proud of how they adjust. Our bedroom has become the new family room. We spread a blanket on the floor between my bed and Steve's bed, and the kids have picnics right there, so they can eat next to Daddy.
My bed is the new reading spot. The three of us (often plus furry Margie) snuggle on my cozy twin bed while I read aloud (we're in the middle of On the Banks of Plum Creek). That way Steve gets to listen, too. Tonight we all watched a movie together, with Steve's oxygen machine providing ambient noise.
I ache for me and for us, too. My heart aches as I watch Steve struggle.
I can't tell you how many times in the last 17 years I've revisited our first date and first kiss in my mind. It literally takes my breath away.
That memory is even sweeter now.
We know how blessed we are to have found each other. We know we were meant for each other. That unbreakable love is what makes this whole experience so painful and so bearable at the same time.
We haven't given up hope or traded in optimism for pessimism. We will continue to fight as much as we can. Steve has always wowed us with his Superman qualities.
Saturday, July 25, 2009
Difficult conversations
I can sometimes (often?) be bossy. This is one of those times.
Do you have life insurance?
Have you discussed the conditions in which you'd want to be kept alive?
Have you discussed with your significant other or closest loved one your final wishes for your body?
Please have these conversations now.
Steve and I never expected to be faced with these issues so early -- while our children are so young, while we're still young. You could even say we're lucky to have had the luxury of time to discuss these difficult issues. Steve has been living with one of the deadliest kinds of cancer for more than a year and a half. Some people don't get the chance to consider end-of-life issues in the way we have.
I'm not an expert in any of these matters, but I do want to share what Steve and I have learned, hoping that it might help others.
Life insurance
If you have access to life insurance at work, you should sign up for it. And if it's an option to pay more for more coverage, you should do that, too.
While you're at it, find out if the policy is portable. If you lose your job, are you able to pick up the total cost of the premiums and take the policy with you?
Even if you have a policy through work, consider buying an additional policy through another source.
If you, like me, don't have a full-time job with benefits, please buy yourself a life insurance policy. Mine is with the same insurance agent who handles our home and car. We get a discount for bundling.
Advance directives
Laws vary from state to state, and again, I'm not an expert. But you should at least have a conversation with the person closest to you about under what circumstances you would want certain medical procedures performed.
We have a living will that directs care for each of us in the event that we're unable to make decisions.
Hospice would prefer that Steve have a DNR (do not resuscitate) order on file, but we've elected not to have one yet. Because Steve's tumor is stable, we feel strongly that he should be treated for other complications.
If the tumor begins to grow again and we're unable to treat it with chemotherapy or other agents, we will revisit the DNR status.
Body
Steve would like his body donated to UT-Southwestern for medical research. He hopes that doctors can study samples from his tumor to help others with GBMs -- perhaps develop a cure or vaccine.
We, of course, pray that the donation won't be necessary for a long time. And I guess I thought that when the time comes, I'd just figure out what to do.
We learned today from our hospice social worker, who made a welcome, spontaneous house call, that there's an actual process to will your body to UT-SW. I assume the same is true for a donation to any medical facility. The person who wants his or her body donated needs to sign documents in advance.
So in the next few days we'll complete the necessary paperwork.
When you die, do you want to be buried? Cremated? Organs donated? Whole body donated? Have you shared this with anyone?
These aren't easy topics. But I think they're easier when they're not in the middle of a crisis. And once you've had the difficult conversations and made decisions, you can move on, with a great burden lifted.
Do you have life insurance?
Have you discussed the conditions in which you'd want to be kept alive?
Have you discussed with your significant other or closest loved one your final wishes for your body?
Please have these conversations now.
Steve and I never expected to be faced with these issues so early -- while our children are so young, while we're still young. You could even say we're lucky to have had the luxury of time to discuss these difficult issues. Steve has been living with one of the deadliest kinds of cancer for more than a year and a half. Some people don't get the chance to consider end-of-life issues in the way we have.
I'm not an expert in any of these matters, but I do want to share what Steve and I have learned, hoping that it might help others.
Life insurance
If you have access to life insurance at work, you should sign up for it. And if it's an option to pay more for more coverage, you should do that, too.
While you're at it, find out if the policy is portable. If you lose your job, are you able to pick up the total cost of the premiums and take the policy with you?
Even if you have a policy through work, consider buying an additional policy through another source.
If you, like me, don't have a full-time job with benefits, please buy yourself a life insurance policy. Mine is with the same insurance agent who handles our home and car. We get a discount for bundling.
Advance directives
Laws vary from state to state, and again, I'm not an expert. But you should at least have a conversation with the person closest to you about under what circumstances you would want certain medical procedures performed.
We have a living will that directs care for each of us in the event that we're unable to make decisions.
Hospice would prefer that Steve have a DNR (do not resuscitate) order on file, but we've elected not to have one yet. Because Steve's tumor is stable, we feel strongly that he should be treated for other complications.
If the tumor begins to grow again and we're unable to treat it with chemotherapy or other agents, we will revisit the DNR status.
Body
Steve would like his body donated to UT-Southwestern for medical research. He hopes that doctors can study samples from his tumor to help others with GBMs -- perhaps develop a cure or vaccine.
We, of course, pray that the donation won't be necessary for a long time. And I guess I thought that when the time comes, I'd just figure out what to do.
We learned today from our hospice social worker, who made a welcome, spontaneous house call, that there's an actual process to will your body to UT-SW. I assume the same is true for a donation to any medical facility. The person who wants his or her body donated needs to sign documents in advance.
So in the next few days we'll complete the necessary paperwork.
When you die, do you want to be buried? Cremated? Organs donated? Whole body donated? Have you shared this with anyone?
These aren't easy topics. But I think they're easier when they're not in the middle of a crisis. And once you've had the difficult conversations and made decisions, you can move on, with a great burden lifted.
Friday, July 24, 2009
Mostly quiet
I'm happy to report a slow news week as far as Steve is concerned.
He's still experiencing variations of symptoms. This week he's struggling a little more with chest congestion and shortness of breath, which in turn creates more fatigue. He was able to sit up in his wheelchair for a few hours a couple of days this week to work and eat at the kitchen table.
The house has been quiet much of the week -- Cooper is on vacation in Washington, D.C., with Jim, Betty and Uncle Jim. We can't wait to see our little guy tomorrow and hear about his adventures.
Last week she told Justin, our babysitter, that because he's older than she is, he would probably die before she does. "I'll miss you when you're in heaven," she said. "But the happy thing? You'll be in my heart."
I'm thankful that she's able to express herself so well.
After breakfast one day this week, she said, "Mommy, I really need to pray right now."
So she folded her hands, squeezed her eyes shut and said: "Dear God, Please keep me safe and don't let me get lost. Amen."
He's still experiencing variations of symptoms. This week he's struggling a little more with chest congestion and shortness of breath, which in turn creates more fatigue. He was able to sit up in his wheelchair for a few hours a couple of days this week to work and eat at the kitchen table.
The house has been quiet much of the week -- Cooper is on vacation in Washington, D.C., with Jim, Betty and Uncle Jim. We can't wait to see our little guy tomorrow and hear about his adventures.
Jim, Betty, Jim, Cooper and Rep. Michael Burgess (our representative and father of our friend Jessica)
Katie and I have enjoyed our time "alone." We've been swimming, reading, coloring and painting. We read Charlie and the Chocolate Factory together over the past three days. She especially loved the book because she was allowed a piece of chocolate after every other chapter -- definitely an incentive to keep reading. We finished the book quicker than I expected!
I continue to field daily questions from Katie about life and death. This week's main questions: Does it hurt to die? Do children ever die before parents?Last week she told Justin, our babysitter, that because he's older than she is, he would probably die before she does. "I'll miss you when you're in heaven," she said. "But the happy thing? You'll be in my heart."
I'm thankful that she's able to express herself so well.
After breakfast one day this week, she said, "Mommy, I really need to pray right now."
So she folded her hands, squeezed her eyes shut and said: "Dear God, Please keep me safe and don't let me get lost. Amen."
Tuesday, July 21, 2009
Muppet
No updates in a few days is a good thing! Steve has had no more bleeding since Friday morning.
He's had the normal ups and downs -- very tired one day, a little more energy the next; can barely walk with the walker one morning, walking better in the afternoon. Today he is more short of breath than yesterday, but we're not worried.
His left side isn't exactly useless, but it is rather floppy. We've been joking that his left arm looks and behaves like a Muppet's arm.
Yesterday I lovingly called him a "Merson" -- half Muppet, half person.
Steve called himself a "Mude" -- half Muppet, half dude.
Facebook friends added their own fun versions.
From Kevin:
"Mutha" -- half Muppet, half brutha
"Mellow" -- half Muppet, half fellow
From Chrys:
"Mud" -- half Muppet, half stud
Feel free to add your own version in the comments.
He's had the normal ups and downs -- very tired one day, a little more energy the next; can barely walk with the walker one morning, walking better in the afternoon. Today he is more short of breath than yesterday, but we're not worried.
His left side isn't exactly useless, but it is rather floppy. We've been joking that his left arm looks and behaves like a Muppet's arm.
Yesterday I lovingly called him a "Merson" -- half Muppet, half person.
Steve called himself a "Mude" -- half Muppet, half dude.
Facebook friends added their own fun versions.
From Kevin:
"Mutha" -- half Muppet, half brutha
"Mellow" -- half Muppet, half fellow
From Chrys:
"Mud" -- half Muppet, half stud
Feel free to add your own version in the comments.
Friday, July 17, 2009
ER update: Home
We are home! We don't love ER visits, but if we have to endure them, we like 'em short.
Steve is back in bed, caught up on his daily meds and hoping for a long nap. He drank a chocolate malt on the way home and will probably stick to very soft foods today, to keep pressure off the upper left side.
We're hoping for a calm, uneventful weekend!
Steve is back in bed, caught up on his daily meds and hoping for a long nap. He drank a chocolate malt on the way home and will probably stick to very soft foods today, to keep pressure off the upper left side.
We're hoping for a calm, uneventful weekend!
ER update
The bleeding in Steve's mouth stopped shortly after he arrived at St. Paul.
His lab work looks pretty good. The platelets and clotting values don't indicate a big problem.
The bleeding was in that little piece of gum that sits between the teeth -- between the two last teeth on the upper left side of his mouth. Dr. B, the ER doctor, just gave Steve a shot (a mix of epinephrine and Novocaine) at that site. The idea is that the adrenaline will help the vessels in that area clot better.
Steve was very brave with the injection. In the ER (unlike at a dentist's office) there is no numbing medicine first -- just a needle straight in the gums.
I spoke with Dr. M, and it looks like there's no reason to keep Steve. We may take today off from the blood thinners and then step down the daily dose a week earlier than expected.
We are relieved to think that we may be back home in just a couple of hours!
His lab work looks pretty good. The platelets and clotting values don't indicate a big problem.
The bleeding was in that little piece of gum that sits between the teeth -- between the two last teeth on the upper left side of his mouth. Dr. B, the ER doctor, just gave Steve a shot (a mix of epinephrine and Novocaine) at that site. The idea is that the adrenaline will help the vessels in that area clot better.
Steve was very brave with the injection. In the ER (unlike at a dentist's office) there is no numbing medicine first -- just a needle straight in the gums.
I spoke with Dr. M, and it looks like there's no reason to keep Steve. We may take today off from the blood thinners and then step down the daily dose a week earlier than expected.
We are relieved to think that we may be back home in just a couple of hours!
ER
Steve woke up this morning with bleeding in his mouth that wouldn't stop. I talked with Dr. M, and we decided that with his history of low blood counts and current use of daily blood thinners, it would be best for Steve to be seen right away.
Our friendly Frisco ENTs arrived quickly, assessed Steve and determined he was stable enough to make it all the way to St. Paul (a good 30 miles from our house).
So Steve and I are here now. The nurse has drawn blood so we can see what his counts are and how his blood is clotting.
I'll update more when we learn more. Thanks for your prayers.
Our friendly Frisco ENTs arrived quickly, assessed Steve and determined he was stable enough to make it all the way to St. Paul (a good 30 miles from our house).
So Steve and I are here now. The nurse has drawn blood so we can see what his counts are and how his blood is clotting.
I'll update more when we learn more. Thanks for your prayers.
Thursday, July 16, 2009
Inching along
Steve is slowly, slowly getting a little better. It's hard to say if today is better than yesterday, but today is definitely better than last Thursday.
Yesterday and today, Steve spent most of the morning and part of the afternoon in his wheelchair. This is a huge victory, as he'd been spending about 23 hours a day in his bed until now. He spends a lot of energy sitting up and working (yes, he's still working when he can) and then requires a long afternoon nap.
He is still short of breath, but it's not as bad. He still needs breathing treatments, but not as often.
His ability to walk is still severely hampered. He uses his walker to move from the bedroom to the bathroom and back. There are many times when I need to physically pick up his left foot or bend and straighten his left knee.
We won't be able to address these physical needs until Steve's overall strength and health is better. That's OK -- we have patience to spare.
*****
Cooper, Katie and I are reading the Little House series by Laura Ingalls Wilder this summer. This afternoon we read I quote that struck me as important:
Yesterday and today, Steve spent most of the morning and part of the afternoon in his wheelchair. This is a huge victory, as he'd been spending about 23 hours a day in his bed until now. He spends a lot of energy sitting up and working (yes, he's still working when he can) and then requires a long afternoon nap.
He is still short of breath, but it's not as bad. He still needs breathing treatments, but not as often.
His ability to walk is still severely hampered. He uses his walker to move from the bedroom to the bathroom and back. There are many times when I need to physically pick up his left foot or bend and straighten his left knee.
We won't be able to address these physical needs until Steve's overall strength and health is better. That's OK -- we have patience to spare.
*****
Cooper, Katie and I are reading the Little House series by Laura Ingalls Wilder this summer. This afternoon we read I quote that struck me as important:
"There's no great loss without some small gain."
(from Little House on the Prairie)
Wednesday, July 15, 2009
Guest blogger Liz: See Spot Run
Hello, See Spot Run runners!
It is sure hot out there -- what a great time for a run! The "Too Hot to Handle" run is this weekend. Registration is closed but I know some of Steve's dear friends will be out there running for him. If you would like to cheer them on this Saturday at White Rock Lake, you can go to this link for more information on the time and course layout.
Also, we will be running the White Rock Marathon again this year, and it's not too early to start training.
Every mile we log keeps that Damm Spot on the run! Let's keep Steve and his family in our thoughts and prayers.
The See Spot Run team is always looking for runs and new members. Please e-mail me at runforsteve@gmail.com for information or to let me know you're interested in joining us!
It is sure hot out there -- what a great time for a run! The "Too Hot to Handle" run is this weekend. Registration is closed but I know some of Steve's dear friends will be out there running for him. If you would like to cheer them on this Saturday at White Rock Lake, you can go to this link for more information on the time and course layout.
Also, we will be running the White Rock Marathon again this year, and it's not too early to start training.
Every mile we log keeps that Damm Spot on the run! Let's keep Steve and his family in our thoughts and prayers.
The See Spot Run team is always looking for runs and new members. Please e-mail me at runforsteve@gmail.com for information or to let me know you're interested in joining us!
Monday, July 13, 2009
Out of the boat
Our friend Tom sat with Steve yesterday morning, allowing Cooper, Katie and me to attend church and Sunday school.
After children's time, Katie went to the nursery, and Cooper and I sat together for the rest of the service.
Pastor Wendy spoke about stepping out of our comfort zones as an act of faith. She spoke about Peter stepping out on the Sea of Galilee -- he walked on water until he took his eyes off Jesus.
For full dramatic effect, Wendy stepped in and out of a canoe that sat on the altar for the day.
After the sermon, the congregation is invited to speak aloud joys or concerns. After someone says a name or condition, we all answer, "Lord, hear our prayer."
Cooper has never spoken up before. Yesterday, he spoke clearly: "For my dad."
As the congregation responded, "Lord, hear our prayer," Cooper whispered to me, "Mommy, I just stepped out of my boat."
After children's time, Katie went to the nursery, and Cooper and I sat together for the rest of the service.
Pastor Wendy spoke about stepping out of our comfort zones as an act of faith. She spoke about Peter stepping out on the Sea of Galilee -- he walked on water until he took his eyes off Jesus.
For full dramatic effect, Wendy stepped in and out of a canoe that sat on the altar for the day.
After the sermon, the congregation is invited to speak aloud joys or concerns. After someone says a name or condition, we all answer, "Lord, hear our prayer."
Cooper has never spoken up before. Yesterday, he spoke clearly: "For my dad."
As the congregation responded, "Lord, hear our prayer," Cooper whispered to me, "Mommy, I just stepped out of my boat."
Saturday, July 11, 2009
Sweetie pies
Three neighbor families organized and executed a lemonade stand today, with the proceeds going to Steve.
They set up shop outside our neighborhood pool, braving the heat (the temperature right now is 101) to sell drinks, snacks and fun pencils and erasers.
Abby had been planning a lemonade stand for weeks, her mom says. Abby's good buddy and ours, Asher, also in on the planning, suggested that the money go to Steve. They recruited their siblings, friends and parents to help make signs, serve drinks and more.
Abby, Asher, Autumn, Zach, Cathy and Bill just delivered the money received -- about $400! That pays for about a month of prescription co-pays for Steve. What an amazing gift! (Asher had told me earlier today that his goal was $50, but $100 would sure be nice.)
Thanks to the Knierings, Chapmans and Warhoftigs for devoting so much time and energy! And thanks to neighbors and friends who supported their hard work!
They set up shop outside our neighborhood pool, braving the heat (the temperature right now is 101) to sell drinks, snacks and fun pencils and erasers.
Abby had been planning a lemonade stand for weeks, her mom says. Abby's good buddy and ours, Asher, also in on the planning, suggested that the money go to Steve. They recruited their siblings, friends and parents to help make signs, serve drinks and more.
Abby, Asher, Autumn, Zach, Cathy and Bill just delivered the money received -- about $400! That pays for about a month of prescription co-pays for Steve. What an amazing gift! (Asher had told me earlier today that his goal was $50, but $100 would sure be nice.)
Thanks to the Knierings, Chapmans and Warhoftigs for devoting so much time and energy! And thanks to neighbors and friends who supported their hard work!
Abby and Asher
Friday, July 10, 2009
Continued prayers
Sweet 8-year-old Connor Cruse of Frisco passed away this afternoon.
He had been battling cancer for more than four years.
We give thanks for his life. We rejoice that he is finally healed. We continue to pray for his family.
He had been battling cancer for more than four years.
We give thanks for his life. We rejoice that he is finally healed. We continue to pray for his family.
Steve stories
Reposting with updates at the end.
From Andrew Harris, who we met in Lubbock and now lives in the Dallas area:
Hey there Steve (and Tyra) ... you guys probably know this, but you are partly responsible for my eternal happiness. As you remember, Joel and Cheryl got married on the South Rim at Big Bend National Park. Your passenger that day as you made that VERY long drive? One Pamela Dunsmore, my future wife and mother to my beautiful daughters. Thank you Mr. Ferryman for bringing my life to me. Hang in there buddy. God loves you, and so do we!
*****
From Frisco friend & neighbor Debbie Pasha:
I remember in both Ms. D and Mrs. Brinlee's classes that he had a true talent in supervising the crafts at parties that dealt with food decoration! He kept the kids from reaching into the candies, and other treats being used to decorate cupcakes, etc. all the while making it a fun experience for them! He looked like he was having fun with it too!
*****
From Jan Dove Guscott of Aurora, Colorado:
When Steve and Jimmy were little, I came down to Houston for the summer. I think they lived in Spring. I was kind of the big sister they never had, and although I lived in Denver we were close for a long time. I can still remember the house.
Jim and Betty were gone for day and a storm came over Houston. It was the worst thunder and lightning storm I have ever been through. The boys and I huddled together in the living room and watched the lightning and told stories. It seemed like the storm lasted for hours, but I am sure that it was relatively short. I even had my own room in their house while I was in college and a key to come and go. The boys were so active, it seems I almost never saw them. But I remember Houston having the biggest bugs I have ever seen. Jim used to keep a giant size bottle of bug spray handy. The boys were never phased and laughed at my sincere fear of these giant roach like bugs.
I’ve known both Steve and Jimmy since they were babies, I have read the blog every day with a catch in my heart for the super human strength and love I am witness to through Tyra’s words. Please know that my prayers are with you all every day and my love – always…
*****
From Will Pry, who introduced us and is Katie's godfather:
I've known Steve for 26 years. I have tons of stories, many of which I will never tell his wife or children.
This is not one of those stories.
We've run a marathon and a half-marathon together, but my favorite race with Steve was the Wild West Relay in 2007 -- 12 runners, 195 miles in the thin Colorado air from Fort Collins to Steamboat Springs. (We finished in about 30 hours.)
Each runner had three legs to run. And by the time we were running our final legs, we were pretty wiped out. I remember that a couple of miles into my leg, I asked the other runners in the van to meet me for a checkup about two miles up the road. I watched the van fly up the road, expecting it to disappear from sight.
Then it stopped, and someone got out. A good half-mile away, here comes Steve, walking in the sun and thin air, up the hill towards me. He and I were clearly the least athletic members of our team, and he needed to rest up for his last run, so I was really confused about what he was doing.
When he reached me, he had a bottle of cold water for me. Just thought I needed it. (He was right.) And he was full of encouragement -- at a time when my body was starting to win the fight with my mind. I played his words over and over in my head as I finished my run.
When I was going to spend the night with Steve in the hospital back in December 2007, my pastor prayed with me, encouraging me to be the "cup of cold water" for a friend in need.
I immediately pictured Steve, walking up the road to meet me on my last leg of the relay. That's the kind of friend Steve is: the kind you pray to have in your life.
*****
From Sharon Grigsby, one of my editors and family friend:
(My lips are sealed about the stories Steve tells me of his University of Michigan years. Suffice to say, those give me hope -- when my own college-age sons recount their own hair-raising adventures --- that they WILL graduate.)
As dad: In the five years or so that I've known Steve he is A Dad First! There was the day he drove Cooper and Katie all the way from Frisco to Rockwall amid a day chocked full of "kid-related activities" -- just so Cooper could explore all the "old school" toys that our teen-age sons had long outgrown. Not to mention the countless trips he made to the car to load up all the games and books we sent home with them! Or the time after Cooper's soccer game (Katie was still in a stroller) when he sent me, Cooper and Tyra to the best ice cream place ever after the game and graciously took a very-worn-out Katie back home for her nap. (I still remember the look on Steve's face -- he REALLY wanted ice cream that day!)
As husband: Steve attended a newspaper get-together shortly after we had coerced Tyra into working with us for a bit in Editorial. I think that was our first meeting. And he literally spent the entire party singing Tyra's praises. It was oh-so-sincere. She is clearly his hero -- and his favorite topic of conversation! (P.S. Have you ever known another man who keeps his wife's bedside table stocked with chocolate?)
As friend: Steve remains my "virtual running coach." I have had many, many Steve Damm lectures about hydration. Not only is he my #1 cheerleader but, when I least expect it, I get a text from him -- or an email -- saying, "Are you drinking your water?" or "Drink your water!" Sometimes it's before a race, and it helps curb my jitters. Sometimes it's there when I wake in the morning for a predawn run. It never fails to produce a giggle from me! And, Steve, I'm drinking water (your favorite -- Pellegrino) right now.
*****
From Liz Wohl, who met Steve at the University of Michigan:
So many Michigan memories include you - from those first weeks of our MMB reserve days (hobbling behind the band on our crutches) all the way through walking to Michigan Stadium together for graduation. Who knew that having a North Muskegon parental connection would be so meaningful?
I remember watching Robocop with you at Bursley (why we chose it I still don't know - except I'm pretty sure herbs had something to do with it), Beetlejuice at the old State Theater, and of course, Fletch at the Church St. apt. There were band trips, like the Illinois Pork Days game when I laughed so hard I spewed soda on an unsuspecting clarinet player when you said,"spooge from hell!" I think it was a floating cobweb, but who knows?
I will always remember the many scary chickies including (but not limited to) "Hell Fiend With Breasts" and "Tuna Juice." And who knows how many (probably hundreds) of times I relished walking past the Baskin Robbins on my way to class just to peer in the window and exchange our standard greeting (finger horns and outstretched tongue). How that gesture started I have no idea, but it was one of my favorite reasons to walk down South U. Stopping in to visit on slow days was even better (yes, even better than eating the ice cream).
I will never forget sitting in our Rise of the Novel class senior year attempting to stifle our laughter about the cannibals (why it was so funny I have no idea - definitely a Seinfeld Pez moment). I think I still have that notebook - I remember saving it just to look at the cannibal stick figure and remember that day.
I can't even begin to tell you how excited I was when you and Tyra moved to Dallas. Having you in my life again brought me such happiness and utter joy. I have so many happy memories of the four of us together - it was like extending our college years (but with disposable income and better beer).
I remember when you first moved to your Carrollton house and I helped you pick up your car from the shop - we sat on your floor looking at CD's, listening to Joe Jackson. It was like we never left Ann Arbor. The matching belts and shirts with E, all the silly Andersen parties, and laughing so hard at David Sedaris, movies, etc. that we almost spewed soda out of our noses (again).
I was so glad to share in Cooper's early days and all the other milestones we celebrated together. You are one of my most treasured friends, and no matter what, you will always have a special place in my heart. I will always, always think of you and remember these and so many other things.
I am so privileged to be one of your friends and to have had so many years of Dammness. I say all of these things with so many hopes for this horrible illness to disappear and for you to be around forever (well, at least until we're old and cranky).
*****
From Laura Chollick, a Frisco friend and neighbor:
I remember when I first met you and Steve and the first thing I thought of was how loving and caring you both were. And as I got to know you I realized I had really never met a couple quite like you two.
You and Steve both have always been so supportive of Will and our fight and you two are the most unselfish people I have ever met. I remember thinking to myself when I would see Steve with the kids what a great dad he is. In Ms D's class he was always there helping with Katie and smiling the whole time.
I am BLESSED to know you both and so honored to be a friend!
*****
From Sharon Harris, a friend from Holy Covenant United Methodist Church:
Steve single-handedly redeemed Monty Python for me when he sang "The Song That Goes Like This" (is that the title?) with Jennifer Baumgardner at our Holy Covenant choir show. Was it two years ago September or October?
And it was a supreme pleasure to sing in the madrigal group with Steve under Rocky DeLuna's leadership. I remember Steve's reluctant departure from the group's rehearsals when his symptoms first appeared. I love Steve's beautiful tenor. It gave me great joy to sit in front of him and the other tenors in choir. Long live song!
Do you have the Spam-a-lot tape? Does it exist? If it does, you should post it!
*****
From Stuart Cutright, a friend since W.T. White:
At the end of our junior year, I think, several members of the WTW band went to Austin for solo and ensemble. I guess there was not enough interest to generate a bus trip, so parents and students drove down to Austin.
It was understood that we were all to stay together while traveling, so our band director, Mr. Long, could keep an eye on us. Huh. Steve, Chris Abel and I jumped into Steve's yellow-brownish Chrysler LeBaron. Well, this particular car was also a convertible. Once we finally got out of the rain showers (it pretty much rained the entire time on the trip down there and back) on the south side of Georgetown, Steve had the genius idea of opening the convertible and disrupting the caravan of cars.
Examining the scenario I, being the uptight band nerd, was totally nervous. Abel, well, who knows. Steve said, "Ah, what the hell." Though there was some light rain, we did make it to our second-rate hotel somewhere near UT.
The look of anger that Mr. Long gave Steve was unforgettable. Regretfully, I forget what Derle said to Steve, but one can say he wasn't too pleased. We were late, out of touch (oh my gosh, no cell phones! What to do?!?!) and considered outcast for the rest of the trip. Thanks, Steve.
-----
Several months after Steve was diagnosed with cancer, I went for a visit to Frisco. Tyra was just leaving when I got there. The weather was mild, though breezy.
Upon leaving, Steve said, "Do you need a jacket, Tyra?"
I'm pretty certain she didn't hear it as the door was closing, but I thought to myself: Here is a guy who has brain cancer and could just give up and feel sorry for himself. His main concern was Tyra's well being, not his health. Though I am not in touch on a daily basis with Steve and Tyra, it was and is evident that Steve's only concern is the love for his wife and children.
*****
From Diane Stem, a friend from Holy Covenant UMC:
When you asked for stories of Steve, I remembered one moment I glimpsed between the two of you. One Sunday the Adult Ed Committee was responsible for manning a table at the back of the sanctuary. You volunteered to help, but I could tell that you were a little uncomfortable with the idea.
You and Steve walked up together, and then he gave you the most beautiful kiss I have ever seen. If kisses were words, his would have been one of promise -- promise that he would be there; promise that you would be all right; promise that you are beloved.
Henri Nouwen said that one of the greatest responsibilities we have as Christians is to let others know how beloved they are. In that one moment between you and Steve, I saw God's presence in your love for one another. Tyra, you are so lucky to be loved by a man such as Steve. And he is lucky to be loved by you.
*****
From Neil Rockind, an ATO fraternity brother:
Remember that nickname? Couch Squid...! Oy, my political career was destroyed before it even got off the ground. Lol. You have a beautiful family and while they no doubt bring a smile to your face, I thought that a quick flashback to that nickname and our college years together might do so as well.
I wanted to write to tell you how kind you were to me in college. I didn't always do things politely or delicately and often was downright difficult to stand but you were always kind. A guy like me never forgets people who were kind.
I didn't want to write to dwell on your condition. Lord knows you get enough of that and I've said my prayers to my God figuring that all bases should be covered just in case.
Instead, I wanted to tell how much you've inspired me as of late. I'm a criminal trial lawyer. I am a workaholic. I'd take piles of work home and work even when it wasn't necessary. I read your wife's blog and am inspired to change. Our time is precious and limited, be it for 20, 40, 60 years. But I was missing out on my life. I wanted you to know that. I'm enjoying more time with my family.
I am thinking of you and praying for you.
Love,
A brother for life.
*****
From Ami Jones, Tyra's aunt:
I will never forget the first time we met Steve. We had only been living back in Texas, in Austin, for several months when Tyra and Steve made plans to come visit us. Tyra had told me about this special man in her life and even before I met him I had the idea that we would love him. He was obviously already making Tyra happy! She bubbled about him to me over several phone conversations prior to their visit.
Our two daughters, Sasha, then 5 years, and Tara, then 2 years, were both enchanted with Steve from the moment he set foot in our home. He had, and still has such patience and a genuine affinity with all children, and adults! Those of you blessed to know Tyra, already know she has always possessed these same qualities, and many more, the both of them.
That first weekend they visited, our youngest daughter Tara would not leave Steve alone for a moment. He graciously and genuinely endured this love fest from our affectionate and playful 2-year-old. She climbed on him like he belonged in a park, and he engaged her and was playful and sweet and kind, a true gentleman.
To this day they have a special connection, those two. On the front of our fridge is a photo of Steve with our Tara taken about two years later, and she is still hanging all over him and both of them are beaming sunshine. Steve has this same photo framed at home.
At some point during that weekend Steve found me alone in the kitchen cooking and proceeded to tell me how much he cared about Tyra, how much he loved her, how special she was. He went on to tell me that he knew how much Tyra loved my husband Rich and I, and how he was so thankful that she had us in her life, how thankful he was that we had been a stable and positive presence in her life through the years. This lovely gallant gentle man stood in my kitchen, someone I had not even known the day before, and made me feel beloved.
We all fell in love with Steve that first visit and we will always be in love with you, Super Steve. Not only because of the wonderful man and father that you are, but because you have brought such a world of happiness and joy to our Tyra, and of course Cooper and Katie.
You make huge ripples in the pond for all of us, Stevie. The world is a far better and brighter place because of you. The profound impact that you still make will always be present. I have often said through the years that if our two girls are blessed enough to find a man that is even half the man Steve Damm is, that we would be very happy. Steve, you have raised the bar for the rest of us, my dear, and we love you and thank you for that. You are beloved by so many, and always will be, you sweetheart of a man.
*****
From Chris Stull, a friend from W.T. White:
I am an old high school buddy of Steve's. Steve and I haven't talked since high school, but I still consider Steve to be a close friend. When you share a liter (ofthe best beer on Earth), at the Hofbrauhaus in Munich, Germany, in high school, there is a bond.
I wanted to voice now and speak, not just for me and my family, but for all the long lost friends following the trials that you face every day, and who are inspired and amazed by it. Although you may not hear from all of them, let me say, we admire the strength and determination in both of you. And, Tyra, thank you for the blog that lets us in.
Steve, my friend ... It's been a long time. One of the strongest images that comes to mind when remembering so far back, is a road trip we took as seniors. I can't remember if it was a band thing or a German club thing, but I remember you.
You were sporting the spiked hair back then, with the Terminator shades, and the best part, driving a convertible. I remember your expression never changed. The wind in the open convertible was moving everything around you, but you were steady. I don'teven think your hair moved. You were focused, looking down that long dusty road, just cruising, the hint of a grin ... and I thought, "That dude is way cool."
You're fighting the good fight, Steve. Hang in there, man, and know that there are those of us out there that haven't told you that we care, but think about you every day.
God bless you and your family.
*****
From Dana Cutright, family friend from Dallas
You may or may not know about Steve's motorcycle. My husband was a great motorcycle enthusiast. At any given time there were as few as six or as many as maybe a dozen motorcycles here at the house, or in storage elsewhere.
I don't remember what first interested Steve in a certain bike that Langdon had. There were trial rides, negotiations, etc. Steve finally bought the motorcycle. His plan I think, was to ride it back and fourth from Dallas to Brenham, and that he did.
I don't think Betty & Jim were too excited about the purchase. We never discussed it, but our friendship weathered that storm.
I was just remembering attending your beautiful wedding on that very hot day here in Dallas, 15 years ago today and I remembered the "motorcycle story," too.
*****
From Laurie, of Freeman Photography in Coppell
I remember several years ago, when we were in our old photography studio, and Steve came in with you to order photos of Cooper and Katie (or maybe it was before Katie was born, can't remember!).
I was so impressed that he took the time out of his busy schedule to be so involved in ordering their photos. I thought at the time, "now, that's a loving, caring, involved Dad!" Cooper and Katie have been very blessed indeed!
*****
From Nancy Arnold, a friend from Holy Covenant UMC:
I sat by Steve in choir at Holy Covenant. We're in the back row seeing pretty much everything that happens. A lot of goofy things happen on a Wednesday night after work. Some of the goofy things were just plain silly. Steve and I would look at each other, as if to confirm, "Did she really just say that?" Then, stifling laughing out loud, we would roll our eyes and try to be nice. Steve, I'm rolling my eyes just remembering.
*****
From Dawn Ladny, a Frisco friend:
The only story I can share about Steve is after he had already been diagnosed with cancer. It brings me to tears, and it shows his true dedication to being the best father a child can hope for.
We had gone to a Scout weekend campout. I knew Cooper was going, but I heard that his grandfather was going to accompany him. At that time, I couldn't help but to think about my own kids who have missed out having their daddy with them at all of their functions.
At the campfire on the first night, I saw Cooper hiking down the trail with his grandfather...and his daddy was right there with him. I was so happy that Steve was able to go on that campout. I know it was important to him ... and equally as important to Cooper.
He was so tired and his gait was unsteady ... I was concerned for his safety. But he was there; his dad helping him to navigate where he needed to go. I know everyone was happy to see him there. It warmed my heart.
*****
From Eric Wohl, who met Steve at the University of Michigan:
My favorite stories of Steve date back to our days at Michigan together. One of my earliest memories of Steve was the day he introduced me to my beautiful and talented wife, Liz, who has been my partner and friend for over 20 years now.
I’ll never forget the Michigan Marching Band trip we all made to Toronto (a lamely veiled excuse for a Molson tasting tour) where Steve and another old friend, Seth Friedman, introduced me to their cute friend Liz. It’s because of Steve that Liz and I first met and have him to thank for making the introduction and friendship blossom over the course of my senior year.
Steve, as some may know, had a different and very wacky side to him in his days back in Ann Arbor, and I think his fraternity rush to ATO is one of the best examples of the two sides of Steve. I remember encouraging Steve to come by our house to consider rushing for ATO and Steve’s general perception that fraternities were a useless waste of time for joiners.
I managed to convince him to come out anyway and Steve put on quite a show as the young eager beaver complete with carefully coiffed hair, navy sport coat, khakis, penny loafers, tortoise glasses and plaid bow tie. He made quite the impression as the polished, thoughtful, polite and funny young man I knew and loved.
Shortly after Steve was invited to join the house, the favor was returned in classic Steve style. As the chapter Pledge Educator at the time, Steve showed his true rebellious self by growing his hair out and made a habit of coming to the house with toothpaste-infused Mohawk, ripped jeans, Doc Martens and skeleton earring for the full effect. I still laugh when I think about the first time we all saw him and wondered if he had had an accident or suffered from a split personality disorder.
He was a great brother to one and all.
The other special story of Steve was his support in my working life when he helped me make the difficult decision to leave my job with Pepsi after 9 long years. Steve had leveraged his great talent in medical practice management (thanks to his hard-earned experience and connections at Baskin Robbins in college) and joined Arthur Andersen’s business consulting practice in Dallas.
He was a huge support in helping me think about a big career change and helped me navigate the maze of Andersen to ultimately land one of the best jobs I’ve ever had in my career. Steve was there early and often to make sure I was doing well. When we were both in town (a rare event back then), we always had lunch together to catch up (the employee referral bonus for making it 90 days helped, too). No matter how busy we were or how long our lunches lapsed, we always picked up where we left off as old friends.
I cherish the friendship and memories we’ve built with the Damm family and join everyone else in hoping Steve’s horrible illness goes away and we all continue to have the privilege of being a friend to Steve.
*****
I look forward to adding more from you all! Send them to tyradamm@gmail.com or leave them in comments.
From Andrew Harris, who we met in Lubbock and now lives in the Dallas area:
Hey there Steve (and Tyra) ... you guys probably know this, but you are partly responsible for my eternal happiness. As you remember, Joel and Cheryl got married on the South Rim at Big Bend National Park. Your passenger that day as you made that VERY long drive? One Pamela Dunsmore, my future wife and mother to my beautiful daughters. Thank you Mr. Ferryman for bringing my life to me. Hang in there buddy. God loves you, and so do we!
*****
From Frisco friend & neighbor Debbie Pasha:
I remember in both Ms. D and Mrs. Brinlee's classes that he had a true talent in supervising the crafts at parties that dealt with food decoration! He kept the kids from reaching into the candies, and other treats being used to decorate cupcakes, etc. all the while making it a fun experience for them! He looked like he was having fun with it too!
*****
From Jan Dove Guscott of Aurora, Colorado:
When Steve and Jimmy were little, I came down to Houston for the summer. I think they lived in Spring. I was kind of the big sister they never had, and although I lived in Denver we were close for a long time. I can still remember the house.
Jim and Betty were gone for day and a storm came over Houston. It was the worst thunder and lightning storm I have ever been through. The boys and I huddled together in the living room and watched the lightning and told stories. It seemed like the storm lasted for hours, but I am sure that it was relatively short. I even had my own room in their house while I was in college and a key to come and go. The boys were so active, it seems I almost never saw them. But I remember Houston having the biggest bugs I have ever seen. Jim used to keep a giant size bottle of bug spray handy. The boys were never phased and laughed at my sincere fear of these giant roach like bugs.
I’ve known both Steve and Jimmy since they were babies, I have read the blog every day with a catch in my heart for the super human strength and love I am witness to through Tyra’s words. Please know that my prayers are with you all every day and my love – always…
*****
From Will Pry, who introduced us and is Katie's godfather:
I've known Steve for 26 years. I have tons of stories, many of which I will never tell his wife or children.
This is not one of those stories.
We've run a marathon and a half-marathon together, but my favorite race with Steve was the Wild West Relay in 2007 -- 12 runners, 195 miles in the thin Colorado air from Fort Collins to Steamboat Springs. (We finished in about 30 hours.)
Each runner had three legs to run. And by the time we were running our final legs, we were pretty wiped out. I remember that a couple of miles into my leg, I asked the other runners in the van to meet me for a checkup about two miles up the road. I watched the van fly up the road, expecting it to disappear from sight.
Then it stopped, and someone got out. A good half-mile away, here comes Steve, walking in the sun and thin air, up the hill towards me. He and I were clearly the least athletic members of our team, and he needed to rest up for his last run, so I was really confused about what he was doing.
When he reached me, he had a bottle of cold water for me. Just thought I needed it. (He was right.) And he was full of encouragement -- at a time when my body was starting to win the fight with my mind. I played his words over and over in my head as I finished my run.
When I was going to spend the night with Steve in the hospital back in December 2007, my pastor prayed with me, encouraging me to be the "cup of cold water" for a friend in need.
I immediately pictured Steve, walking up the road to meet me on my last leg of the relay. That's the kind of friend Steve is: the kind you pray to have in your life.
*****
From Sharon Grigsby, one of my editors and family friend:
(My lips are sealed about the stories Steve tells me of his University of Michigan years. Suffice to say, those give me hope -- when my own college-age sons recount their own hair-raising adventures --- that they WILL graduate.)
As dad: In the five years or so that I've known Steve he is A Dad First! There was the day he drove Cooper and Katie all the way from Frisco to Rockwall amid a day chocked full of "kid-related activities" -- just so Cooper could explore all the "old school" toys that our teen-age sons had long outgrown. Not to mention the countless trips he made to the car to load up all the games and books we sent home with them! Or the time after Cooper's soccer game (Katie was still in a stroller) when he sent me, Cooper and Tyra to the best ice cream place ever after the game and graciously took a very-worn-out Katie back home for her nap. (I still remember the look on Steve's face -- he REALLY wanted ice cream that day!)
As husband: Steve attended a newspaper get-together shortly after we had coerced Tyra into working with us for a bit in Editorial. I think that was our first meeting. And he literally spent the entire party singing Tyra's praises. It was oh-so-sincere. She is clearly his hero -- and his favorite topic of conversation! (P.S. Have you ever known another man who keeps his wife's bedside table stocked with chocolate?)
As friend: Steve remains my "virtual running coach." I have had many, many Steve Damm lectures about hydration. Not only is he my #1 cheerleader but, when I least expect it, I get a text from him -- or an email -- saying, "Are you drinking your water?" or "Drink your water!" Sometimes it's before a race, and it helps curb my jitters. Sometimes it's there when I wake in the morning for a predawn run. It never fails to produce a giggle from me! And, Steve, I'm drinking water (your favorite -- Pellegrino) right now.
*****
From Liz Wohl, who met Steve at the University of Michigan:
So many Michigan memories include you - from those first weeks of our MMB reserve days (hobbling behind the band on our crutches) all the way through walking to Michigan Stadium together for graduation. Who knew that having a North Muskegon parental connection would be so meaningful?
I remember watching Robocop with you at Bursley (why we chose it I still don't know - except I'm pretty sure herbs had something to do with it), Beetlejuice at the old State Theater, and of course, Fletch at the Church St. apt. There were band trips, like the Illinois Pork Days game when I laughed so hard I spewed soda on an unsuspecting clarinet player when you said,"spooge from hell!" I think it was a floating cobweb, but who knows?
I will always remember the many scary chickies including (but not limited to) "Hell Fiend With Breasts" and "Tuna Juice." And who knows how many (probably hundreds) of times I relished walking past the Baskin Robbins on my way to class just to peer in the window and exchange our standard greeting (finger horns and outstretched tongue). How that gesture started I have no idea, but it was one of my favorite reasons to walk down South U. Stopping in to visit on slow days was even better (yes, even better than eating the ice cream).
I will never forget sitting in our Rise of the Novel class senior year attempting to stifle our laughter about the cannibals (why it was so funny I have no idea - definitely a Seinfeld Pez moment). I think I still have that notebook - I remember saving it just to look at the cannibal stick figure and remember that day.
I can't even begin to tell you how excited I was when you and Tyra moved to Dallas. Having you in my life again brought me such happiness and utter joy. I have so many happy memories of the four of us together - it was like extending our college years (but with disposable income and better beer).
I remember when you first moved to your Carrollton house and I helped you pick up your car from the shop - we sat on your floor looking at CD's, listening to Joe Jackson. It was like we never left Ann Arbor. The matching belts and shirts with E, all the silly Andersen parties, and laughing so hard at David Sedaris, movies, etc. that we almost spewed soda out of our noses (again).
I was so glad to share in Cooper's early days and all the other milestones we celebrated together. You are one of my most treasured friends, and no matter what, you will always have a special place in my heart. I will always, always think of you and remember these and so many other things.
I am so privileged to be one of your friends and to have had so many years of Dammness. I say all of these things with so many hopes for this horrible illness to disappear and for you to be around forever (well, at least until we're old and cranky).
*****
From Laura Chollick, a Frisco friend and neighbor:
I remember when I first met you and Steve and the first thing I thought of was how loving and caring you both were. And as I got to know you I realized I had really never met a couple quite like you two.
You and Steve both have always been so supportive of Will and our fight and you two are the most unselfish people I have ever met. I remember thinking to myself when I would see Steve with the kids what a great dad he is. In Ms D's class he was always there helping with Katie and smiling the whole time.
I am BLESSED to know you both and so honored to be a friend!
*****
From Sharon Harris, a friend from Holy Covenant United Methodist Church:
Steve single-handedly redeemed Monty Python for me when he sang "The Song That Goes Like This" (is that the title?) with Jennifer Baumgardner at our Holy Covenant choir show. Was it two years ago September or October?
And it was a supreme pleasure to sing in the madrigal group with Steve under Rocky DeLuna's leadership. I remember Steve's reluctant departure from the group's rehearsals when his symptoms first appeared. I love Steve's beautiful tenor. It gave me great joy to sit in front of him and the other tenors in choir. Long live song!
Do you have the Spam-a-lot tape? Does it exist? If it does, you should post it!
*****
From Stuart Cutright, a friend since W.T. White:
At the end of our junior year, I think, several members of the WTW band went to Austin for solo and ensemble. I guess there was not enough interest to generate a bus trip, so parents and students drove down to Austin.
It was understood that we were all to stay together while traveling, so our band director, Mr. Long, could keep an eye on us. Huh. Steve, Chris Abel and I jumped into Steve's yellow-brownish Chrysler LeBaron. Well, this particular car was also a convertible. Once we finally got out of the rain showers (it pretty much rained the entire time on the trip down there and back) on the south side of Georgetown, Steve had the genius idea of opening the convertible and disrupting the caravan of cars.
Examining the scenario I, being the uptight band nerd, was totally nervous. Abel, well, who knows. Steve said, "Ah, what the hell." Though there was some light rain, we did make it to our second-rate hotel somewhere near UT.
The look of anger that Mr. Long gave Steve was unforgettable. Regretfully, I forget what Derle said to Steve, but one can say he wasn't too pleased. We were late, out of touch (oh my gosh, no cell phones! What to do?!?!) and considered outcast for the rest of the trip. Thanks, Steve.
-----
Several months after Steve was diagnosed with cancer, I went for a visit to Frisco. Tyra was just leaving when I got there. The weather was mild, though breezy.
Upon leaving, Steve said, "Do you need a jacket, Tyra?"
I'm pretty certain she didn't hear it as the door was closing, but I thought to myself: Here is a guy who has brain cancer and could just give up and feel sorry for himself. His main concern was Tyra's well being, not his health. Though I am not in touch on a daily basis with Steve and Tyra, it was and is evident that Steve's only concern is the love for his wife and children.
*****
From Diane Stem, a friend from Holy Covenant UMC:
When you asked for stories of Steve, I remembered one moment I glimpsed between the two of you. One Sunday the Adult Ed Committee was responsible for manning a table at the back of the sanctuary. You volunteered to help, but I could tell that you were a little uncomfortable with the idea.
You and Steve walked up together, and then he gave you the most beautiful kiss I have ever seen. If kisses were words, his would have been one of promise -- promise that he would be there; promise that you would be all right; promise that you are beloved.
Henri Nouwen said that one of the greatest responsibilities we have as Christians is to let others know how beloved they are. In that one moment between you and Steve, I saw God's presence in your love for one another. Tyra, you are so lucky to be loved by a man such as Steve. And he is lucky to be loved by you.
*****
From Neil Rockind, an ATO fraternity brother:
Remember that nickname? Couch Squid...! Oy, my political career was destroyed before it even got off the ground. Lol. You have a beautiful family and while they no doubt bring a smile to your face, I thought that a quick flashback to that nickname and our college years together might do so as well.
I wanted to write to tell you how kind you were to me in college. I didn't always do things politely or delicately and often was downright difficult to stand but you were always kind. A guy like me never forgets people who were kind.
I didn't want to write to dwell on your condition. Lord knows you get enough of that and I've said my prayers to my God figuring that all bases should be covered just in case.
Instead, I wanted to tell how much you've inspired me as of late. I'm a criminal trial lawyer. I am a workaholic. I'd take piles of work home and work even when it wasn't necessary. I read your wife's blog and am inspired to change. Our time is precious and limited, be it for 20, 40, 60 years. But I was missing out on my life. I wanted you to know that. I'm enjoying more time with my family.
I am thinking of you and praying for you.
Love,
A brother for life.
*****
From Ami Jones, Tyra's aunt:
I will never forget the first time we met Steve. We had only been living back in Texas, in Austin, for several months when Tyra and Steve made plans to come visit us. Tyra had told me about this special man in her life and even before I met him I had the idea that we would love him. He was obviously already making Tyra happy! She bubbled about him to me over several phone conversations prior to their visit.
Our two daughters, Sasha, then 5 years, and Tara, then 2 years, were both enchanted with Steve from the moment he set foot in our home. He had, and still has such patience and a genuine affinity with all children, and adults! Those of you blessed to know Tyra, already know she has always possessed these same qualities, and many more, the both of them.
That first weekend they visited, our youngest daughter Tara would not leave Steve alone for a moment. He graciously and genuinely endured this love fest from our affectionate and playful 2-year-old. She climbed on him like he belonged in a park, and he engaged her and was playful and sweet and kind, a true gentleman.
To this day they have a special connection, those two. On the front of our fridge is a photo of Steve with our Tara taken about two years later, and she is still hanging all over him and both of them are beaming sunshine. Steve has this same photo framed at home.
At some point during that weekend Steve found me alone in the kitchen cooking and proceeded to tell me how much he cared about Tyra, how much he loved her, how special she was. He went on to tell me that he knew how much Tyra loved my husband Rich and I, and how he was so thankful that she had us in her life, how thankful he was that we had been a stable and positive presence in her life through the years. This lovely gallant gentle man stood in my kitchen, someone I had not even known the day before, and made me feel beloved.
We all fell in love with Steve that first visit and we will always be in love with you, Super Steve. Not only because of the wonderful man and father that you are, but because you have brought such a world of happiness and joy to our Tyra, and of course Cooper and Katie.
You make huge ripples in the pond for all of us, Stevie. The world is a far better and brighter place because of you. The profound impact that you still make will always be present. I have often said through the years that if our two girls are blessed enough to find a man that is even half the man Steve Damm is, that we would be very happy. Steve, you have raised the bar for the rest of us, my dear, and we love you and thank you for that. You are beloved by so many, and always will be, you sweetheart of a man.
*****
From Chris Stull, a friend from W.T. White:
I am an old high school buddy of Steve's. Steve and I haven't talked since high school, but I still consider Steve to be a close friend. When you share a liter (ofthe best beer on Earth), at the Hofbrauhaus in Munich, Germany, in high school, there is a bond.
I wanted to voice now and speak, not just for me and my family, but for all the long lost friends following the trials that you face every day, and who are inspired and amazed by it. Although you may not hear from all of them, let me say, we admire the strength and determination in both of you. And, Tyra, thank you for the blog that lets us in.
Steve, my friend ... It's been a long time. One of the strongest images that comes to mind when remembering so far back, is a road trip we took as seniors. I can't remember if it was a band thing or a German club thing, but I remember you.
You were sporting the spiked hair back then, with the Terminator shades, and the best part, driving a convertible. I remember your expression never changed. The wind in the open convertible was moving everything around you, but you were steady. I don'teven think your hair moved. You were focused, looking down that long dusty road, just cruising, the hint of a grin ... and I thought, "That dude is way cool."
You're fighting the good fight, Steve. Hang in there, man, and know that there are those of us out there that haven't told you that we care, but think about you every day.
God bless you and your family.
*****
From Dana Cutright, family friend from Dallas
You may or may not know about Steve's motorcycle. My husband was a great motorcycle enthusiast. At any given time there were as few as six or as many as maybe a dozen motorcycles here at the house, or in storage elsewhere.
I don't remember what first interested Steve in a certain bike that Langdon had. There were trial rides, negotiations, etc. Steve finally bought the motorcycle. His plan I think, was to ride it back and fourth from Dallas to Brenham, and that he did.
I don't think Betty & Jim were too excited about the purchase. We never discussed it, but our friendship weathered that storm.
I was just remembering attending your beautiful wedding on that very hot day here in Dallas, 15 years ago today and I remembered the "motorcycle story," too.
*****
From Laurie, of Freeman Photography in Coppell
I remember several years ago, when we were in our old photography studio, and Steve came in with you to order photos of Cooper and Katie (or maybe it was before Katie was born, can't remember!).
I was so impressed that he took the time out of his busy schedule to be so involved in ordering their photos. I thought at the time, "now, that's a loving, caring, involved Dad!" Cooper and Katie have been very blessed indeed!
*****
From Nancy Arnold, a friend from Holy Covenant UMC:
I sat by Steve in choir at Holy Covenant. We're in the back row seeing pretty much everything that happens. A lot of goofy things happen on a Wednesday night after work. Some of the goofy things were just plain silly. Steve and I would look at each other, as if to confirm, "Did she really just say that?" Then, stifling laughing out loud, we would roll our eyes and try to be nice. Steve, I'm rolling my eyes just remembering.
*****
From Dawn Ladny, a Frisco friend:
The only story I can share about Steve is after he had already been diagnosed with cancer. It brings me to tears, and it shows his true dedication to being the best father a child can hope for.
We had gone to a Scout weekend campout. I knew Cooper was going, but I heard that his grandfather was going to accompany him. At that time, I couldn't help but to think about my own kids who have missed out having their daddy with them at all of their functions.
At the campfire on the first night, I saw Cooper hiking down the trail with his grandfather...and his daddy was right there with him. I was so happy that Steve was able to go on that campout. I know it was important to him ... and equally as important to Cooper.
He was so tired and his gait was unsteady ... I was concerned for his safety. But he was there; his dad helping him to navigate where he needed to go. I know everyone was happy to see him there. It warmed my heart.
*****
From Eric Wohl, who met Steve at the University of Michigan:
My favorite stories of Steve date back to our days at Michigan together. One of my earliest memories of Steve was the day he introduced me to my beautiful and talented wife, Liz, who has been my partner and friend for over 20 years now.
I’ll never forget the Michigan Marching Band trip we all made to Toronto (a lamely veiled excuse for a Molson tasting tour) where Steve and another old friend, Seth Friedman, introduced me to their cute friend Liz. It’s because of Steve that Liz and I first met and have him to thank for making the introduction and friendship blossom over the course of my senior year.
Steve, as some may know, had a different and very wacky side to him in his days back in Ann Arbor, and I think his fraternity rush to ATO is one of the best examples of the two sides of Steve. I remember encouraging Steve to come by our house to consider rushing for ATO and Steve’s general perception that fraternities were a useless waste of time for joiners.
I managed to convince him to come out anyway and Steve put on quite a show as the young eager beaver complete with carefully coiffed hair, navy sport coat, khakis, penny loafers, tortoise glasses and plaid bow tie. He made quite the impression as the polished, thoughtful, polite and funny young man I knew and loved.
Shortly after Steve was invited to join the house, the favor was returned in classic Steve style. As the chapter Pledge Educator at the time, Steve showed his true rebellious self by growing his hair out and made a habit of coming to the house with toothpaste-infused Mohawk, ripped jeans, Doc Martens and skeleton earring for the full effect. I still laugh when I think about the first time we all saw him and wondered if he had had an accident or suffered from a split personality disorder.
He was a great brother to one and all.
The other special story of Steve was his support in my working life when he helped me make the difficult decision to leave my job with Pepsi after 9 long years. Steve had leveraged his great talent in medical practice management (thanks to his hard-earned experience and connections at Baskin Robbins in college) and joined Arthur Andersen’s business consulting practice in Dallas.
He was a huge support in helping me think about a big career change and helped me navigate the maze of Andersen to ultimately land one of the best jobs I’ve ever had in my career. Steve was there early and often to make sure I was doing well. When we were both in town (a rare event back then), we always had lunch together to catch up (the employee referral bonus for making it 90 days helped, too). No matter how busy we were or how long our lunches lapsed, we always picked up where we left off as old friends.
I cherish the friendship and memories we’ve built with the Damm family and join everyone else in hoping Steve’s horrible illness goes away and we all continue to have the privilege of being a friend to Steve.
*****
I look forward to adding more from you all! Send them to tyradamm@gmail.com or leave them in comments.
Thursday, July 9, 2009
Excellent news: MRI shows no change
We just visited with Dr. M on the phone, who reports that today's MRI shows virtually no change from the last MRI.
This is such glorious news -- news that I honestly wasn't expecting. It's still sinking in.
Dr. M attributes Steve's worsening neurological symptoms to his extreme fatigue and slow recovery from all of his respiratory issues.
Our continued goal is for Steve to get stronger, so that he can resume physical therapy and possibly chemotherapy. His stable scan gives us a great window of time to reach those goals.
Today has been a long day. Steve and I were gone from 9 a.m. to 1:45 p.m. Steve was so wiped out when we returned home -- he had been sitting up for almost five hours, had been moved from one imaging center to another, we ran out of oxygen on the drive home and it was 100 degrees outside.
As he was trying to stand up with his walker to get out of the minivan, he fell. Not to the ground, but to the floor of the car. Neighbors Ron and Derek were able to help me pick him up and put him in his wheelchair.
Jim and Betty arrived just after to take care of Steve so Cooper, Katie and I could leave to celebrate Coop's birthday with some of his buddies. There were 10 children total, and we watched Ice Age: Dawn of the Dinosaurs and then ate dinner together. (Special thanks to Zena and Cathy for helping chaperone.)
As much as we loved the party and being surrounded by so many sweet little people and their families -- all part of our own extended family -- I couldn't stop thinking of Steve at home, missing Cooper's party. I couldn't stop wondering about his MRI results.
I guess I shouldn't have worried at all, but if you know me, you realize that's just not possible.
The four of us should all sleep well tonight, and tomorrow is a new day. A day not promised -- a great gift when it arrives!
Thank you all for continued prayers and support and strength.
This is such glorious news -- news that I honestly wasn't expecting. It's still sinking in.
Dr. M attributes Steve's worsening neurological symptoms to his extreme fatigue and slow recovery from all of his respiratory issues.
Our continued goal is for Steve to get stronger, so that he can resume physical therapy and possibly chemotherapy. His stable scan gives us a great window of time to reach those goals.
Today has been a long day. Steve and I were gone from 9 a.m. to 1:45 p.m. Steve was so wiped out when we returned home -- he had been sitting up for almost five hours, had been moved from one imaging center to another, we ran out of oxygen on the drive home and it was 100 degrees outside.
As he was trying to stand up with his walker to get out of the minivan, he fell. Not to the ground, but to the floor of the car. Neighbors Ron and Derek were able to help me pick him up and put him in his wheelchair.
Jim and Betty arrived just after to take care of Steve so Cooper, Katie and I could leave to celebrate Coop's birthday with some of his buddies. There were 10 children total, and we watched Ice Age: Dawn of the Dinosaurs and then ate dinner together. (Special thanks to Zena and Cathy for helping chaperone.)
As much as we loved the party and being surrounded by so many sweet little people and their families -- all part of our own extended family -- I couldn't stop thinking of Steve at home, missing Cooper's party. I couldn't stop wondering about his MRI results.
I guess I shouldn't have worried at all, but if you know me, you realize that's just not possible.
The four of us should all sleep well tonight, and tomorrow is a new day. A day not promised -- a great gift when it arrives!
Thank you all for continued prayers and support and strength.
Wednesday, July 8, 2009
MRI in the morning
Steve and I will report to the cancer center Thursday morning for an MRI so we can see what's going on with the Damm Spot.
We typically get results about an hour later. But Dr. M's clinic schedule is packed, so we'll talk with her late Thursday from home.
Steve will also have a chest X-ray tomorrow. His respiratory symptoms have worsened today. His breathing is shallow, he has a rattle in his chest and his temperature is elevated. Dr. M and I spoke late tonight, and we've decided to extend his antibiotic dose. I plan on waking up every two hours tonight to check on him.
*****
Some wisdom from Katie today:
"I wish I was a wildflower so I could grow all by myself."
"Watermelon is like a popsicle, but it doesn't melt."
"I am filled with many hearts. My red heart creates hearts for other people. My yellow heart spreads sunshine."
And from Cooper:
(After he saw a Hamburger Helper commercial for the first time)
"That looks good! I mean, macaroni and meat!"
(While reading the newspaper)
"What does m-e-n-o-p-a-u-s-e spell?"
(I briefly explain)
"Why is there a musical about THAT?"
We typically get results about an hour later. But Dr. M's clinic schedule is packed, so we'll talk with her late Thursday from home.
Steve will also have a chest X-ray tomorrow. His respiratory symptoms have worsened today. His breathing is shallow, he has a rattle in his chest and his temperature is elevated. Dr. M and I spoke late tonight, and we've decided to extend his antibiotic dose. I plan on waking up every two hours tonight to check on him.
*****
Some wisdom from Katie today:
"I wish I was a wildflower so I could grow all by myself."
"Watermelon is like a popsicle, but it doesn't melt."
"I am filled with many hearts. My red heart creates hearts for other people. My yellow heart spreads sunshine."
And from Cooper:
(After he saw a Hamburger Helper commercial for the first time)
"That looks good! I mean, macaroni and meat!"
(While reading the newspaper)
"What does m-e-n-o-p-a-u-s-e spell?"
(I briefly explain)
"Why is there a musical about THAT?"
Tuesday, July 7, 2009
Bits and pieces
Steve has a new symptom that isn't worrying us yet but is worth noting.
His vision is changing, especially with too much light or not enough light. Images are blurrier, and he has trouble distinguishing objects.
His left side is still much weaker today than three weeks ago. We realize that this could still be a side effect of the respiratory problems and his body being weak overall.
*****
His fatigue is debilitating. He spends the majority of the day in bed; that is most unusual for Steve. His body is just too tired for sitting up for long.
*****
The hospice home health equipment vendor arrived yesterday to set up their hospital bed. The previous vendor wasn't here yet to break down the old bed, so the hospice people took care of that. Then the old vendor showed up and took his bed away.
The old vendor also wanted to take the wheelchair that we've been using since Steve came home from rehab at Zale. The hospice-provided wheelchair is heavier and harder for me to push. So I told the old vendor, "No." Politely, of course.
I'm trying to work out an agreement with our insurance company that allows us to keep the first wheelchair.
*****
I've been giving Steve blood thinner shots in his belly every afternoon. The procedure at home is more complex than in the hospital. I draw the medicine from a vial instead of using pre-measured, spring-loaded needles. Steve never flinches and says he doesn't feel anything.
Still, I have no plans to pursue a nursing degree. I'm most thankful for professionally trained nurses (including Cyndi, who trained me at home on the procedure).
*****
The home health aide began work today. She sat in the kitchen with us as Steve ate breakfast and Katie painted. Katie talked nonstop for about 20 minutes -- a good introduction to life at our house!
She then helped Steve with a bath and with dressing. She'll spend 90 minutes a day, three days a week, at the house to help Steve.
*****
Katie and I were visiting yesterday morning while I was cleaning the kitchen.
She suddenly said, "I have a sadness because Daddy's tumor and crazy eye won't get better."
This is not something that we've told her. We always talk about hoping for and praying for his tumor to get better. (We also make no promises that it will get better.)
This was her own conclusion.
I wrapped her in a big hug. She held on tightly for a few seconds.
And then we worked on building a new Lego set.
His vision is changing, especially with too much light or not enough light. Images are blurrier, and he has trouble distinguishing objects.
His left side is still much weaker today than three weeks ago. We realize that this could still be a side effect of the respiratory problems and his body being weak overall.
*****
His fatigue is debilitating. He spends the majority of the day in bed; that is most unusual for Steve. His body is just too tired for sitting up for long.
*****
The hospice home health equipment vendor arrived yesterday to set up their hospital bed. The previous vendor wasn't here yet to break down the old bed, so the hospice people took care of that. Then the old vendor showed up and took his bed away.
The old vendor also wanted to take the wheelchair that we've been using since Steve came home from rehab at Zale. The hospice-provided wheelchair is heavier and harder for me to push. So I told the old vendor, "No." Politely, of course.
I'm trying to work out an agreement with our insurance company that allows us to keep the first wheelchair.
*****
I've been giving Steve blood thinner shots in his belly every afternoon. The procedure at home is more complex than in the hospital. I draw the medicine from a vial instead of using pre-measured, spring-loaded needles. Steve never flinches and says he doesn't feel anything.
Still, I have no plans to pursue a nursing degree. I'm most thankful for professionally trained nurses (including Cyndi, who trained me at home on the procedure).
*****
The home health aide began work today. She sat in the kitchen with us as Steve ate breakfast and Katie painted. Katie talked nonstop for about 20 minutes -- a good introduction to life at our house!
She then helped Steve with a bath and with dressing. She'll spend 90 minutes a day, three days a week, at the house to help Steve.
*****
Katie and I were visiting yesterday morning while I was cleaning the kitchen.
She suddenly said, "I have a sadness because Daddy's tumor and crazy eye won't get better."
This is not something that we've told her. We always talk about hoping for and praying for his tumor to get better. (We also make no promises that it will get better.)
This was her own conclusion.
I wrapped her in a big hug. She held on tightly for a few seconds.
And then we worked on building a new Lego set.
Sunday, July 5, 2009
Baby love
John (a Run for Steve team member) and Caren introduced us to their darling three-and-a-half-month-old babies this afternoon. Katie danced around the house all day, asking when the babies would be here. Steve rested and napped to save energy for the special visit.
Nick and Steve
Our patience was rewarded with sweet cuddles and gummy smiles.
Makena and Katie, Cooper and Nick
Friday, July 3, 2009
Since we've been home
We're doing our best to settle in since coming home late Wednesday.
Steve's symptoms seem to get a tiny bit better every day.
Today he's been able to say three or four words before catching his breath. Yesterday he could say just one word before taking a breath.
He's moving around at home more than in the hospital. Every time he walks with his walker (very small distances), he gets a little better. He's talking out loud as he walks to help him relearn what to do -- "Right foot forward. Stop. Left foot forward."
He's been eating at least two meals a day at the table with us. He needs to sit up at least half an hour before eating (after he takes Reglan) and an hour after eating to reduce the chance of acid reflux, which could lead to coughing, which could lead to aspiration. In those before and after times he's able to play with the kids or watch them play or just enjoy being upright in his own home.
I've been working with hospice representatives off and on since we came home -- chaplain, social worker, admissions nurse, case manager nurse, pharmacists and home health equipment people. I think that this transition period will be the most time intensive. Once we have a routine down, everyone should fit more naturally into the schedule.
A home health aide will be here for about 90 minutes three days a week to help with bathing and other simple tasks. She begins work Monday.
The case manager nurse will stop by once a week to take vitals, check on symptoms and change Steve's PICC line dressings. (One outstanding question is if Steve will keep the PICC line, which was installed for chemotherapy, which he can't get now for a while.)
We can call on additional services as needed -- massage therapy, music therapy, counseling.
Aunt Ami returned home today, after spending nine days at the house. Sarah spent a few hours here today, running errands, cooking, taking Cooper and Katie to the pool. Jim and Betty will be here soon to help us celebrate Cooper's eighth birthday, which, he'll tell you, is official at 7:07 p.m.
We loved being home for our anniversary yesterday. We opted for takeout dinner at home, with Cooper, Katie and Ami. It wasn't like some of our fancy outings of the past (Stephan Pyles, the French Room). There's nothing like an inoperable brain tumor, pulmonary embolism and hospice to put the celebration in perspective. Being together is all that really matters.
Steve's symptoms seem to get a tiny bit better every day.
Today he's been able to say three or four words before catching his breath. Yesterday he could say just one word before taking a breath.
He's moving around at home more than in the hospital. Every time he walks with his walker (very small distances), he gets a little better. He's talking out loud as he walks to help him relearn what to do -- "Right foot forward. Stop. Left foot forward."
He's been eating at least two meals a day at the table with us. He needs to sit up at least half an hour before eating (after he takes Reglan) and an hour after eating to reduce the chance of acid reflux, which could lead to coughing, which could lead to aspiration. In those before and after times he's able to play with the kids or watch them play or just enjoy being upright in his own home.
I've been working with hospice representatives off and on since we came home -- chaplain, social worker, admissions nurse, case manager nurse, pharmacists and home health equipment people. I think that this transition period will be the most time intensive. Once we have a routine down, everyone should fit more naturally into the schedule.
A home health aide will be here for about 90 minutes three days a week to help with bathing and other simple tasks. She begins work Monday.
The case manager nurse will stop by once a week to take vitals, check on symptoms and change Steve's PICC line dressings. (One outstanding question is if Steve will keep the PICC line, which was installed for chemotherapy, which he can't get now for a while.)
We can call on additional services as needed -- massage therapy, music therapy, counseling.
Aunt Ami returned home today, after spending nine days at the house. Sarah spent a few hours here today, running errands, cooking, taking Cooper and Katie to the pool. Jim and Betty will be here soon to help us celebrate Cooper's eighth birthday, which, he'll tell you, is official at 7:07 p.m.
We loved being home for our anniversary yesterday. We opted for takeout dinner at home, with Cooper, Katie and Ami. It wasn't like some of our fancy outings of the past (Stephan Pyles, the French Room). There's nothing like an inoperable brain tumor, pulmonary embolism and hospice to put the celebration in perspective. Being together is all that really matters.
Thursday, July 2, 2009
15 years
Steve and I tell stories differently.
I think years of editing and condensing other people’s words for newspaper publication heightened my sense of brevity. I tend to answer questions with the most efficient use of words.
Steve is a natural storyteller. He adds colorful phrases and pauses for emphasis and goes off on tangents.
His stories are always better than mine.
When people ask how we met, I usually say something like, “One of his best friends from high school was one of my best friends in college. He introduced us.”
Steve’s answer takes longer but is definitely more fun. And it illustrates how seemingly random twists and decisions lead to life-changing events.
Steve and Will Pry were friends at a North Dallas high school. They were in band together. They shared classes. They sometimes shared contempt from certain teachers who didn’t appreciate their adolescent antics.
Upon graduation, they went separate ways.
Steve attended the University of Michigan, following a family tradition set by his grandfather, great uncle, dad and others.
He took a while to settle on a major. Pre med, pre law, religion and finally English literature because he realized he was going to graduate soon and needed to declare a major. He had more English credits than any other.
Will attended the University of North Texas, where he majored in journalism.
When Steve would come home from college breaks, he didn’t return to Texas. His parents had since moved to Miami, so he spent summers and Christmases in Florida.
Will was dating a young woman he met at North Texas whose family was from Florida. He spent some time with her family during breaks.
And Steve and Will resumed their friendship.
While Steve was in college, he worked for a Baskin-Robbins franchise owned by two guys – one who lived in Michigan and one who lived in Texas.
The Texas partner, Tim, was visiting the summer after Steve’s graduation and asked what Steve would do at the end of summer.
Steve’s plan was to move in with his parents (who had just moved back to Texas), study for the LSAT and apply to law schools.
Tim convinced Steve to instead move to Brenham, Texas, where he managed a large physician practice. He appreciated Steve’s work ethic at the ice cream shop and thought Steve would be a good fit in the business office.
So he headed to Blue Bell country.
Steve may have been a good fit in the office, but he sought more than Brenham could offer on the weekends. He’d often drive to Dallas, stay with his parents and visit his long-time friend, Will, still at student at UNT.
It was at North Texas that Will and I met. We were in the same reporting class. He’d set a Big Gulp on the desk in front of mine. Gravity took over, the giant soda slid and fell on top of my black-watch plaid back pack.
I didn’t hold a grudge. We later worked on the college daily together and were co-managing editors when he introduced me to his friend Steve.
I was engaged at the time (that’s a whole other story) and didn’t pay him much attention.
A few months later, the engagement was off. My ex and I had four tickets to The Cure concert and, for reasons I don’t recall now, I thought it was a good idea that we still go together.
Will convinced me otherwise. He also convinced me to invite his buddy Steve.
Melissa Tarun, Will, Steve and I braved the heat of Dallas in June to see The Cure live at Texas Stadium. A few weeks later, Steve and I had our first official date. All because Steve scooped ice cream in Ann Arbor and spent summers in Miami with Will.
Fifteen years ago today, we were married.
No matter how you tell the story, it always has a happy ending.
July 2, 1994
Wednesday, July 1, 2009
Home and hospice
This is just a quick note to report that we arrived home and that Steve has been admitted to hospice service. I can explain more tomorrow all those details. Right now, though, I look forward to sleep in my own bed.
Thank you all for the many prayers that carried us through the past nine days.
Thank you all for the many prayers that carried us through the past nine days.
Getting ready to go home
1. Steve's early morning lab work showed that he was low on potassium. That required an infusion of potassium, which took about four hours over the morning and afternoon. (It was supposed to be six, but because he's receiving medication through his PICC line and burning at the entry site isn't an issue, our sweet nurse moved it to four hours.)
2. He's eaten well, without reflux or aspiration or choking, since yesterday afternoon.
3. We expect to leave the hospital sometime after 4 p.m. today.
4. We've learned that July 1 is the day once a year that teams rotate and residents, interns and fellows move around. Steve's medical team this morning was entirely new, which leaves me a little unsettled. Thankfully, Dr. G's team had everything in place, and we've just been waiting to see if he's able to hold down food and acid. (One of our doctors called July 1 "the scariest day in the hospital." Please remember that when you're scheduling elective surgery in the years to come.)
5. I am equally thrilled and terrified that we're going home. Home will be glorious for obvious reasons. But if something goes wrong, I won't have help as soon as I press a button. I expect to feel more comfortable when we're home, get settled in and visit with the hospice nurse who will be admitting Steve at home today.
2. He's eaten well, without reflux or aspiration or choking, since yesterday afternoon.
3. We expect to leave the hospital sometime after 4 p.m. today.
4. We've learned that July 1 is the day once a year that teams rotate and residents, interns and fellows move around. Steve's medical team this morning was entirely new, which leaves me a little unsettled. Thankfully, Dr. G's team had everything in place, and we've just been waiting to see if he's able to hold down food and acid. (One of our doctors called July 1 "the scariest day in the hospital." Please remember that when you're scheduling elective surgery in the years to come.)
5. I am equally thrilled and terrified that we're going home. Home will be glorious for obvious reasons. But if something goes wrong, I won't have help as soon as I press a button. I expect to feel more comfortable when we're home, get settled in and visit with the hospice nurse who will be admitting Steve at home today.
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