Kick the Damm Spot is just a few days away!
The organizing team has devoted countless hours to making the event a success. We look forward to the big day, when we'll see old friends and meet new friends. Even if you're not kicking, please feel free to stop by Fieldhouse USA in Frisco between 10 a.m. and 7 p.m. Saturday. Steve will be there as he's able to say hello!
The fundraiser includes a silent auction with some awesome items (especially if you're a hockey fan or love sweet treats, eating out or spoiling your pup). You can preview the items and even start bidding now here. The online auction closes at 5 p.m. Friday, and the bidding continues in person Saturday, closing at 5 p.m.
Sunday, May 31, 2009
Temperature update
Steve's temperature has settled back down to his normal levels -- 96 or 97. His breathing isn't as labored today, either. He's still tired and has no big plans for the day -- other than eating Leti's homemade gnocchi!
Saturday, May 30, 2009
Scattershooting
- Steve has been struggling a bit the past two days with shortness of breath, coughing and fatigue. He's been using breathing treatments often and has been on oxygen most of the time. We've been paying close attention to his temperature. The highest reading has been 99.6. If it hits 100.5, then we'll most likely head to the ER.
- We're still waiting to hear on his chemotherapy appointment for next week.
- A Dallas couple, Arik and Mia, are training for a cross-country bike ride to raise money for the Lance Armstrong Foundation. They are riding in memory of and honor of folks with cancer. They're adding Steve to their list and will include his name on their jerseys. You can read about their training here.
- This is one of those weeks that I'm especially frustrated with cancer. There's Steve, of course. And 8-year-old Connor Cruse, a fellow Frisco resident who is struggling in his battle with neuroblastoma (though his current treatment is offering some hope). And Hank Bassen, dad to one of our dear friends, who passed away yesterday, after a recent cancer diagnosis. And a new e-mail friend, whose fiance was recently diagnosed with an inoperable brain tumor. And a family friend who passed away last weekend from complications of lung cancer. I pray that the cumulative frustration of patients, their loved ones, caregivers and medical providers will propel us toward solutions and an ultimate cure.
- In less than a week, Cooper will be a third-grader! Every year zooms by faster than the year before. I remember just about every moment of his life -- how can he be halfway finished with elementary school?!
Thursday, May 28, 2009
Great platelet count
Steve's platelet count today is 168,000!
We can definitely schedule the next dose of Carboplatin and Avastin now. Dr. M's team is working on that, and we hope to have an appointment for next week.
Steve is moving around well. He used his walker today -- no wheelchair -- for the lab visit. He walked from the valet station, through the lobby of the cancer center, to the elevator, to the check-in desk, to the vital sign station, to the fast-track lab, to the waiting room and then back to the car. Go, Steve, go!
We took Katie with us today. Her school year is over, and we knew we wouldn't be at center too long. She was very polite during the visit. While the three of us waited for lab results, Katie and I talked with another patient in the waiting room.
She has two children herself -- a 10-year-old daughter and 7-year-old son. She's been fighting cancer for a few years. "My God is good," she said. "And I keep praying."
She told me that at that very moment, as we were talking, she was praying for our family, giving a significant nod to Steve.
When she was called back for her appointment, she said goodbye and promised to continue to pray.
*****
We continue to be blown away by the effort of the Kick the Damm Spot team. They've secured incredible corporate sponsorships plus donations for every child who participates.
The silent auction includes all kinds of treasures -- gift cards to area restaurants and stores, ZitaCookies, Dallas Stars signed collectibles (from the current team and retired superstars) and more.
Please let me or Phil Mango know if you have questions about the day. We'd love to see a big group of you at the event June 6!
We can definitely schedule the next dose of Carboplatin and Avastin now. Dr. M's team is working on that, and we hope to have an appointment for next week.
Steve is moving around well. He used his walker today -- no wheelchair -- for the lab visit. He walked from the valet station, through the lobby of the cancer center, to the elevator, to the check-in desk, to the vital sign station, to the fast-track lab, to the waiting room and then back to the car. Go, Steve, go!
We took Katie with us today. Her school year is over, and we knew we wouldn't be at center too long. She was very polite during the visit. While the three of us waited for lab results, Katie and I talked with another patient in the waiting room.
She has two children herself -- a 10-year-old daughter and 7-year-old son. She's been fighting cancer for a few years. "My God is good," she said. "And I keep praying."
She told me that at that very moment, as we were talking, she was praying for our family, giving a significant nod to Steve.
When she was called back for her appointment, she said goodbye and promised to continue to pray.
*****
We continue to be blown away by the effort of the Kick the Damm Spot team. They've secured incredible corporate sponsorships plus donations for every child who participates.
The silent auction includes all kinds of treasures -- gift cards to area restaurants and stores, ZitaCookies, Dallas Stars signed collectibles (from the current team and retired superstars) and more.
Please let me or Phil Mango know if you have questions about the day. We'd love to see a big group of you at the event June 6!
Wednesday, May 27, 2009
Parade
Monday morning a parade of neighborhood kids visited Steve with a welcome home gift.
Awesome neighbor and friend Meghan had organized the creation of a special bowl for Steve. A giant caterpillar, made up of fingerprints of our young friends, marches across the hand-painted bowl. Their names are underneath each section.
They also gave him bags of candy to fill the bowl -- sweet reminders of the love that surrounds Steve and our family!
Awesome neighbor and friend Meghan had organized the creation of a special bowl for Steve. A giant caterpillar, made up of fingerprints of our young friends, marches across the hand-painted bowl. Their names are underneath each section.
They also gave him bags of candy to fill the bowl -- sweet reminders of the love that surrounds Steve and our family!
Saturday, May 23, 2009
Instinct
Last night I was re-reading the very first post on this blog. I do that every few months to remind myself of how far Steve has come and the many countless blessings we've encountered since December 2007.
What I didn't share then is the role that instinct has played in this journey.
In the weeks before Steve's first MRI, which revealed a lesion in the brain stem, he was noticing some odd symptoms. Difficulty swallowing thin liquids, frequent hiccups, recurrent headache, slurred speech.
It sounds strange now, but at the time we didn't lump them all together as one big problem. The symptoms didn't hit all at once. One day he'd have trouble eating soup. Two days later I'd have trouble understanding a phone conversation.
By Thanksgiving that year, about four weeks after we started noting symptoms, we agreed that something was wrong and that he needed to see his primary care physician.
When we returned from Austin, he made an appointment for the following week.
Dr. Y didn't seem all that concerned. He wanted to order a modified swallow study and possibly an MRI.
I wasn't convinced that we should take things so slowly. Something just didn't feel right. So I called our friend Jen, a speech therapist, to describe the symptoms.
Cooper and Katie were eating dinner in the kitchen. I didn't want to worry them with the list of Steve's troubles, so I stepped into the dining room. After I described everything to Jen, she gently explained that the worst case could be a mass in his brain.
I had to sit down right away. The very thought took my breath away. And yet it also made sense.
When Steve came home, I shared the Jen conversation and emphasized the importance of getting an MRI right away.
We had to pester and practically beg Dr. Y's office to schedule the MRI.
On Dec. 11, 2007, we drove to an Irving hospital for the modified swallow study. The test revealed no problems. I kept asking, "Are you sure? You don't see anything?"
That afternoon we were back in Frisco for the MRI. I was in the imaging room with Steve, listening to the magnets and reading a book. Steve was in the machine the whole time. He couldn't see the technician through the glass window, but I could.
I could see when he stepped away, and as each minute passed and he didn't return, I knew without a doubt that something was wrong.
The tech returned, spent more time directing the giant machine to scan Steve's brain, and then moved us to a hallway in the radiology department.
And, man, was he chatty. He talked about rock concerts from the 1970s, mostly. He and Steve shared an affinity for ZZ Top. I tried to listen and be polite, but my stomach was in knots. I knew he was stalling.
When he finally introduced us to the radiologist, I saw for the first time a look of sympathy and pity that we would see again and again in the next few weeks.
The radiologist briefly explained that the big bright blob in the middle of the film on his light board was a lesion. He had called Dr. Y with the results. Dr. Y was on the other line of the phone to talk to Steve.
We were stunned and shocked. Steve sobbed. I blinked a lot and listened as closely as I could to the radiologist, and then we left, with instructions to see Dr. Y the next morning.
The next morning it was pouring. If you live in the Dallas area, you know that rain and commutes don't mix well. We were late to the Dr. Y appointment in Irving, and the receptionist haughtily told us that we may not be able to see Dr. Y that day.
That woman had no idea what we were dealing with, but I wasn't going to let that excuse her behavior. I'm sure I raised my voice a little as I told her that we would be seen right away.
The meeting with Dr. Y didn't go well. He told us he was sending us to the neurologist he sends all his patients to.
I asked if the neurologist had a specialty. Did he specialize in MS, seizures, Parkinson's?
Dr. Y, who refused to make eye contact with me during the entire appointment, said with the same tone his receptionist had used, "Neurology is the specialty. You don't get more specialized than that."
We left to see his Dr. S. And we decided we'd never see Dr. Y again. (To this day, Dr. Y's office has never called to follow up. Steve had been his patient for a decade.)
Dr. S must have never seen a film like Steve's before, which is fine, but he should have just said so right away. Instead he stumbled and guessed. He looked at the scan and said, "You know, I think they can just go in and cut that out."
Now, I had done some cursory research and made some quick phone calls to friends with medical expertise, and I knew that you don't just cut into the brain stem. And I'm a journalist with a bachelor's degree, not a physician with a specialty in neurology.
We left Dr. S and decided we wouldn't return.
We were fortunate to have access to other options. The son of one of Steve's co-workers is a neuro-surgeon in Dallas. Leti made phone calls and got us an appointment with her son that very afternoon.
Plus, Steve works with doctors at Children's who are on faculty at UT-Southwestern. One of them made a phone call to a renowned neurosurgeon at UT-SW, and we got an appointment for the next day. We also have a friend who is a physician who called UT-SW on our behalf. (Soon I need to write about all the people placed in our path -- part of a plan that we're convinced can't be called coincidence.)
Every step along the way since then, Steve and I have relied on a great many factors to influence decisions. We research options, talk to as many people as possible before becoming overwhelmed, pray, think, study. And we listen to our intuition.
Before this experience, I thought of health care as a sort of flow chart. You have a fever and bulging eardrums? That's an ear infection, and you need an antibiotic. You have a deep cut on the palm of your hand? You need stitches.
With an illness as big as cancer, health care is truly an art and a science. There is no one answer to every problem. There isn't one expert who solves everything with a prescription.
There are multiple choices and paths, and the patient and caregiver often have as much say as the medical providers. That's liberating and frightening at the same time.
What I didn't share then is the role that instinct has played in this journey.
In the weeks before Steve's first MRI, which revealed a lesion in the brain stem, he was noticing some odd symptoms. Difficulty swallowing thin liquids, frequent hiccups, recurrent headache, slurred speech.
It sounds strange now, but at the time we didn't lump them all together as one big problem. The symptoms didn't hit all at once. One day he'd have trouble eating soup. Two days later I'd have trouble understanding a phone conversation.
By Thanksgiving that year, about four weeks after we started noting symptoms, we agreed that something was wrong and that he needed to see his primary care physician.
When we returned from Austin, he made an appointment for the following week.
Dr. Y didn't seem all that concerned. He wanted to order a modified swallow study and possibly an MRI.
I wasn't convinced that we should take things so slowly. Something just didn't feel right. So I called our friend Jen, a speech therapist, to describe the symptoms.
Cooper and Katie were eating dinner in the kitchen. I didn't want to worry them with the list of Steve's troubles, so I stepped into the dining room. After I described everything to Jen, she gently explained that the worst case could be a mass in his brain.
I had to sit down right away. The very thought took my breath away. And yet it also made sense.
When Steve came home, I shared the Jen conversation and emphasized the importance of getting an MRI right away.
We had to pester and practically beg Dr. Y's office to schedule the MRI.
On Dec. 11, 2007, we drove to an Irving hospital for the modified swallow study. The test revealed no problems. I kept asking, "Are you sure? You don't see anything?"
That afternoon we were back in Frisco for the MRI. I was in the imaging room with Steve, listening to the magnets and reading a book. Steve was in the machine the whole time. He couldn't see the technician through the glass window, but I could.
I could see when he stepped away, and as each minute passed and he didn't return, I knew without a doubt that something was wrong.
The tech returned, spent more time directing the giant machine to scan Steve's brain, and then moved us to a hallway in the radiology department.
And, man, was he chatty. He talked about rock concerts from the 1970s, mostly. He and Steve shared an affinity for ZZ Top. I tried to listen and be polite, but my stomach was in knots. I knew he was stalling.
When he finally introduced us to the radiologist, I saw for the first time a look of sympathy and pity that we would see again and again in the next few weeks.
The radiologist briefly explained that the big bright blob in the middle of the film on his light board was a lesion. He had called Dr. Y with the results. Dr. Y was on the other line of the phone to talk to Steve.
We were stunned and shocked. Steve sobbed. I blinked a lot and listened as closely as I could to the radiologist, and then we left, with instructions to see Dr. Y the next morning.
The next morning it was pouring. If you live in the Dallas area, you know that rain and commutes don't mix well. We were late to the Dr. Y appointment in Irving, and the receptionist haughtily told us that we may not be able to see Dr. Y that day.
That woman had no idea what we were dealing with, but I wasn't going to let that excuse her behavior. I'm sure I raised my voice a little as I told her that we would be seen right away.
The meeting with Dr. Y didn't go well. He told us he was sending us to the neurologist he sends all his patients to.
I asked if the neurologist had a specialty. Did he specialize in MS, seizures, Parkinson's?
Dr. Y, who refused to make eye contact with me during the entire appointment, said with the same tone his receptionist had used, "Neurology is the specialty. You don't get more specialized than that."
We left to see his Dr. S. And we decided we'd never see Dr. Y again. (To this day, Dr. Y's office has never called to follow up. Steve had been his patient for a decade.)
Dr. S must have never seen a film like Steve's before, which is fine, but he should have just said so right away. Instead he stumbled and guessed. He looked at the scan and said, "You know, I think they can just go in and cut that out."
Now, I had done some cursory research and made some quick phone calls to friends with medical expertise, and I knew that you don't just cut into the brain stem. And I'm a journalist with a bachelor's degree, not a physician with a specialty in neurology.
We left Dr. S and decided we wouldn't return.
We were fortunate to have access to other options. The son of one of Steve's co-workers is a neuro-surgeon in Dallas. Leti made phone calls and got us an appointment with her son that very afternoon.
Plus, Steve works with doctors at Children's who are on faculty at UT-Southwestern. One of them made a phone call to a renowned neurosurgeon at UT-SW, and we got an appointment for the next day. We also have a friend who is a physician who called UT-SW on our behalf. (Soon I need to write about all the people placed in our path -- part of a plan that we're convinced can't be called coincidence.)
Every step along the way since then, Steve and I have relied on a great many factors to influence decisions. We research options, talk to as many people as possible before becoming overwhelmed, pray, think, study. And we listen to our intuition.
Before this experience, I thought of health care as a sort of flow chart. You have a fever and bulging eardrums? That's an ear infection, and you need an antibiotic. You have a deep cut on the palm of your hand? You need stitches.
With an illness as big as cancer, health care is truly an art and a science. There is no one answer to every problem. There isn't one expert who solves everything with a prescription.
There are multiple choices and paths, and the patient and caregiver often have as much say as the medical providers. That's liberating and frightening at the same time.
Friday, May 22, 2009
Kick the Damm Spot
For almost four years, Cooper has been a member of the Dolphins soccer team.Of course, all the parents and siblings are members of the extended team. We are especially blessed with a great group of parents.
Together we've watched our boys grow from chubby-cheeked preschoolers to long-legged second-graders. We've celebrated new siblings and mourned the loss of grandparents together.
We all trust one another to chaperone sleepovers and to drive kids to and from practices and games.
The Dolphins family, led by Coach Phil Mango and Jen, and other close friends have organized an amazing fundraiser to benefit Steve and our family, to help pay for growing medical costs. (Proceeds will also benefit Frisco Family Services, an excellent social services organization.)
The Kick the Damm Spot event is scheduled for Saturday, June 6, in Frisco. (You can read more about it here.)
Kids are invited to gather pledges for every goal they can kick in three minutes. So, if a child gets a pledge for $1 per goal, and she kicks 15 goals, she would collect $15 from the person pledging.
Steve and I are overwhelmed by the time and effort already devoted by the Kick the Damm Spot team. They are putting together a really exciting day, with vendors, silent auction and prizes for the kids who participate.
If you are interested in helping with the event in any way (signing up your child or entire soccer team, auction donations, sponsorships), you can contact Phil Mango at PJMango@midamerican.com.
If you would like to sponsor Cooper or Katie, who will both be kicking in the event, you can e-mail me at tyradamm@gmail.com, and I'll fill in his or her pledge card for you.
Thursday, May 21, 2009
Today's good news
Steve's platelets have risen to 92,000 (up from 77,000 two days ago)! This means a few things:
He won't get a repeat Doppler of his right leg unless symptoms warrant the test. Right now, we're all hoping that the clot has finished growing and won't cause trouble (symptoms like swelling, redness or heat).
Dr. M is pleased with how much more mobility Steve has today compared with a month ago. She raved about the compliments she heard from the Zale rehab unit. (I wrote about Steve's awesome attitude in my column today.)
We're also setting up outpatient physical and occupational therapy appointments so that Steve can continue his progress and maintain his strength.
*****
Check back soon for details on a fun Damm Spot fundraiser being organized by a group of dear friends!
- The clot in his right leg does not seem to be hogging platelets and therefore doesn't require blood thinners.
- He may have built resistance to Heparin. (Results from that blood work won't be ready until tomorrow, probably.)
- He can't have chemotherapy and Avastin yet, but he's headed in the right direction.
He won't get a repeat Doppler of his right leg unless symptoms warrant the test. Right now, we're all hoping that the clot has finished growing and won't cause trouble (symptoms like swelling, redness or heat).
Dr. M is pleased with how much more mobility Steve has today compared with a month ago. She raved about the compliments she heard from the Zale rehab unit. (I wrote about Steve's awesome attitude in my column today.)
We're also setting up outpatient physical and occupational therapy appointments so that Steve can continue his progress and maintain his strength.
*****
Check back soon for details on a fun Damm Spot fundraiser being organized by a group of dear friends!
Tuesday, May 19, 2009
Next steps
Steve is home!
We arrived just as Cooper was coming home from school and have been settling in ever since. Steve is navigating the house well in his new wheelchair, and we hope he's able to sleep comfortably in the new hospital-style bed. The oxygen machine is pumping, providing a constant respiratory boost.
Our departure was delayed a bit today because of last-minute labs and an MRI.
First, the amazing MRI news: The Damm Spot is a little smaller than it was on April 17!
Woo hoo!
According to the report, the cyst (the middle part of the tumor) is slightly diminished, and the enhancement is slightly less. And there is no bleeding. This is all excellent news.
The labs reveal a bit of a concern. Steve's platelet count is dropping. Yesterday it was 88,000. Today it was 77,000.
Dr. M has two theories on the drop.
1. Steve could have developed Heparin-induced thrombocytopenia (HIT). As Fancy Nancy would explain, that is a fancy way to say that he could have developed antibodies to the blood thinner Heparin.
Heparin is used to flush Steve's PICC line, to make sure there is no clotting in the line. He received Heparin twice a day while at Zale. If he has developed HIT, his body is unable to produce the normal number of platelets.
2. His platelets could be gathering at the blood clot in his right leg. I imagine the clot as a big, fun party that all the platelets want to attend. They hang out there too long and then can't get moving and therefore aren't a part of Steve's general blood flow.
So now we work on diagnosis. (This is where a flowchart would come in handy.)
On Thursday, we'll go to the cancer center for labs. By then he'll be about 48 hours without Heparin. They'll check his platelets and also draw tests for antibodies.
If the test reveals he has HIT, then he'll just stop using Heparin. There are other drugs that do the same work.
If the platelets haven't recovered and he doesn't have the HIT antibody, then we'll head to the St. Paul imaging center for another Doppler of his right leg.
Based on lab results and possible Doppler of his leg, we'll determine the next course of action.
If the clot is worse or causing the platelet trouble, we'll have to treat the clot -- after his platelet counts recover. (This may require a transfusion.)
If the clot is better, we can work toward the next chemotherapy and Avastin treatment -- again, after Steve's platelet counts recover. Dr. M is most comfortable when the count is in the 100,000 range.
So, Steve gets a full day off from medical providers, and then we'll take the next steps on Thursday.
Dr. M shared with me how much the eighth floor enjoyed Steve as a patient. He never lacked motivation, and he impressed the team with his progress.
"They loved him!" she said.
Don't we all?!
We arrived just as Cooper was coming home from school and have been settling in ever since. Steve is navigating the house well in his new wheelchair, and we hope he's able to sleep comfortably in the new hospital-style bed. The oxygen machine is pumping, providing a constant respiratory boost.
Our departure was delayed a bit today because of last-minute labs and an MRI.
First, the amazing MRI news: The Damm Spot is a little smaller than it was on April 17!
Woo hoo!
According to the report, the cyst (the middle part of the tumor) is slightly diminished, and the enhancement is slightly less. And there is no bleeding. This is all excellent news.
The labs reveal a bit of a concern. Steve's platelet count is dropping. Yesterday it was 88,000. Today it was 77,000.
Dr. M has two theories on the drop.
1. Steve could have developed Heparin-induced thrombocytopenia (HIT). As Fancy Nancy would explain, that is a fancy way to say that he could have developed antibodies to the blood thinner Heparin.
Heparin is used to flush Steve's PICC line, to make sure there is no clotting in the line. He received Heparin twice a day while at Zale. If he has developed HIT, his body is unable to produce the normal number of platelets.
2. His platelets could be gathering at the blood clot in his right leg. I imagine the clot as a big, fun party that all the platelets want to attend. They hang out there too long and then can't get moving and therefore aren't a part of Steve's general blood flow.
So now we work on diagnosis. (This is where a flowchart would come in handy.)
On Thursday, we'll go to the cancer center for labs. By then he'll be about 48 hours without Heparin. They'll check his platelets and also draw tests for antibodies.
If the test reveals he has HIT, then he'll just stop using Heparin. There are other drugs that do the same work.
If the platelets haven't recovered and he doesn't have the HIT antibody, then we'll head to the St. Paul imaging center for another Doppler of his right leg.
Based on lab results and possible Doppler of his leg, we'll determine the next course of action.
If the clot is worse or causing the platelet trouble, we'll have to treat the clot -- after his platelet counts recover. (This may require a transfusion.)
If the clot is better, we can work toward the next chemotherapy and Avastin treatment -- again, after Steve's platelet counts recover. Dr. M is most comfortable when the count is in the 100,000 range.
So, Steve gets a full day off from medical providers, and then we'll take the next steps on Thursday.
Dr. M shared with me how much the eighth floor enjoyed Steve as a patient. He never lacked motivation, and he impressed the team with his progress.
"They loved him!" she said.
Don't we all?!
Sunday, May 17, 2009
Quick weekend update
Steve and Katie resting this afternoon- Cooper and Katie were able to visit with Steve on Friday, Saturday and Sunday. We watched a movie, ate meals, napped, cuddled, caught up on details from the week.
- Steve has not started blood thinners. We will visit with Dr. M this week to determine definitively if they are needed. Our current understanding is that the clot in his right leg is breaking up on its own and, for now, doesn't require additional help.
- Steve is continuing to require oxygen and breathing treatments, plus he's taking cough and allergy medication. His lungs sound clear on daily exams.
- Today was his day off from any therapy. Tomorrow he returns to three hours of physical and occupational therapy.
- We're on track for his discharge Tuesday. We have a lot of loose ends to tie up (hospital bed and wheelchair delivery, next MRI, continuation of oxygen at home, etc.) Monday.
- We are incredibly thankful for never-ceasing prayer and support and love from you all. Thank you!
Thursday, May 14, 2009
Shrinking Damm Clot?
Not long after finishing today's earlier post, Dr. N visited Steve and me with excellent news.
Today's Doppler scan shows that the clot in Steve's right leg is the same size as it was earlier this week. It's not larger! And there is evidence of flow through the clot! Steve's body appears to be fighting and possibly dissipating the clot.
What a relief it will be if Steve can avoid long-term use of blood thinners.
I've been in contact with Dr. M to learn what this means for Steve's continued treatment against the Damm Spot. We pray that he's able to resume Avastin and chemotherapy to keep the tumor in check.
Thank you for continued support and prayer!
Today's Doppler scan shows that the clot in Steve's right leg is the same size as it was earlier this week. It's not larger! And there is evidence of flow through the clot! Steve's body appears to be fighting and possibly dissipating the clot.
What a relief it will be if Steve can avoid long-term use of blood thinners.
I've been in contact with Dr. M to learn what this means for Steve's continued treatment against the Damm Spot. We pray that he's able to resume Avastin and chemotherapy to keep the tumor in check.
Thank you for continued support and prayer!
Damm Spot vs. Damm Clot
In one corner, we have the Damm Spot, a grade IV glioblastoma of the brain stem. It was officially diagnosed in January 2008.
In the other, there's the Damm Clot, a growing blood clot in the right leg. It was officially diagnosed a week ago.
The two unwelcome intruders are battling for medical attention.
To keep the Damm Spot in its place, we've used radiation, then different chemotherapies and the bio-agent Avastin. Avastin seems to be the most effective right now at stopping the tumor from spreading.
To keep the Damm Clot from moving to the lungs, an IVC filter was placed in a blood vein. The filter, though, doesn't stop the clot from growing. Platelets start sticking together, and the clot propagates. The only way to break up the clot is with blood thinners.
And there lies the conflict.
Steve can't take Avastin and blood thinners at the same time. If we stop Avastin, we risk tumor growth. If we don't use blood thinners, we risk clot growth and a whole other mess of problems.
We are in a delicate balancing act.
The current proposal is to stop Avastin and chemotherapy for the next month. Dr. M hopes that a month of blood thinners will be enough to break up the clot and not enough time for the tumor to grow.
After a month of daily blood thinners, we would evaluate the clot and the tumor and make a decision. If the clot is gone, we go back to Avastin and chemo. If the clot is still there and the tumor is stable, we most likely stick with blood thinners longer. If the clot is still there and the tumor is growing, well then we have more problems.
Please join us in praying that the Spot and the Clot make a truce, a compromise. That they both stop expanding. That they get smaller. Out Damm Spot! Out Damm Clot!
Steve braves the sidewalks of Dallas with his hospital-issue walker during PT this afternoon. (Walker Texas Ranger is getting a break at home.)
Tuesday, May 12, 2009
Another week
Dr. N and the rest of the rehab team stopped by today to recommend that Steve stay on the eighth floor until next Tuesday -- another week. By then he should be ready to more safely resume life at home.
M and Steve this morning work on balance. He's standing on an unsteady surface without using the bars -- a great accomplishment!
Steve continues to push himself during therapy.
This morning we batted a blue balloon back and forth. He was standing up on his own, just behind his walker, and his PT stood behind him as a spotter. I stood a few feet in front.
The balloon tossing reminded me of way back in Lubbock days, when Avalanche-Journal newsroom colleagues and spouses would gather for Wednesday night volleyball on the concrete court or midnight volleyball in the sand. Norval would stand at the net, ready to dunk. Brenna would school us all with her college-trained serve. I hit wildly, sending balls anywhere but where they belonged. Steve always did well -- all arms and legs.
Those long arms served him well today. He was able to reach far and swat at almost all my wild throws -- all while keeping his balance.
Just a few feet away, an older gentleman was working on physical therapy as well. His disabilities appear great. The PT encouraged him to try a little harder, and the patient replied with great dejection, "I'm not going to heal."
The PT did not like this response. "If you don't believe in yourself, you won't heal. You need a positive attitude."
I was again reminded of how positive Steve has remained as he battles brain cancer. What a joy it is to be his teammate, to help him fight the Damm Spot as we continue to care for our amazing children.
Cooper likes to pretend the tub is a giant swimming pool until real swimming season begins.
Katie recently completed Delicate Dancers, a tap and ballet class, with best friend Noe. (Layne is the awesome photographer.)
Monday, May 11, 2009
Rehab update
Steve is making excellent progress in rehab. I am just so proud of how hard he's working and how much he's accomplished so far.
In physical therapy, he's been able to walk with a walker on flat surfaces and on steps with rails. His PT uses a stretchy bandage to wrap his foot and calf, which gives him an artificial way to keep his foot from dropping and dragging.
Steve and M, his cheerful PT (grainy photo with my Blackberry)
In occupational therapy, he's focusing on that stubborn left arm. His movement has improved a great deal, and the therapists are pushing him to push and pull and lift.
All the activity is definitely taking its toll. He was exhausted Sunday but had more energy this morning, which he spent right away on three hours of exercise.
Steve was wheeled away for about an hour this morning for another sonogram of his right leg. The blood clot is bigger now than it was last week, which is what Dr. N expected would happen.
There are still risks that parts of the clot could break off, even with the filter in place, so we're paying close attention for shortness of breath and chest pains. He's had shortness of breath, most likely related to physical activity, but no chest pain. Yesterday he had a chest X-ray that returned clear -- no signs of concern.
The team meets tomorrow to discuss all the current rehab cases and make recommendations about continued care. I expect they'll request about another week of therapy, but that's just based on my intuition and putting together clues.
We're also waiting to hear the status of this week's previously scheduled MRI and when Avastin and Carboplatin can be administered again. One of our many current prayers is that the timing of the next treatment is precisely correct -- that we don't wait too long and that we don't rush and risk a poor healing process.
Saturday, May 9, 2009
Change
I usually embrace change.
Almost a decade ago I was part of a team that introduced a new front-end and pagination system to the Dallas Morning News newsroom. We trained hundreds of journalists on the new software. Some folks had never even held a computer mouse before.
Our team knew that change was difficult for many employees. Part of our job was handling the emotions of the transition. I was good at this job.
The past year and a half has brought drastic change to the Damm family. The impetus for the change -- a few rogue cells that multiplied and created the Damm Spot -- is awful. But for the most part, I think we've handled the resulting transitions well. We keep looking for and celebrating the silver linings.
Steve has been able to spend more time with Cooper and Katie, as he's not spending 10 or more hours a week commuting to and from work. Instead, we drive him as a family to work or, more recently, he works from home, surrounded by more love and joy than we could hope for.
We've been showered with good wishes, gifts, prayers, visits and more from the most amazing support group. At least once a day a friend or acquaintance marvels at how good you all are, how blessed we are. It is so true.
We are reminded hourly of what matters most, and most of the time we try to honor those priorities.
There are changes, though, that catch me off guard and break my heart more than I anticipated.
When Steve comes home from physical rehab, he'll need a hospital bed for safety and ease of movement. He probably needed one weeks ago, but his fall accentuated the acute need. The Zale Lipshy social worker is helping us secure one.
To get ready for the new bed, today the old bed -- the one we chose for the first home we bought, in 1998 -- was packed away. Uncle Greg and friend Jeff arrived early this morning to dismantle our bed and an antique dresser and move them to a nearby storage unit. We also moved a cabinet from the bedroom into the dining room.
A twin bed for me is in our room now, and a big open space in the middle waits for Steve's new hospital bed.
I think that I've cried more over this change than anything since Steve's diagnosis.
The change is so obvious and symbolic. I just didn't expect it to hit me so hard.
Cooper and Katie have found a silver lining already. They love the temporary open floor space and abundance of pillows laying about.
I trust that in time I'll handle this change better, too. Steve's safety and comfort are most important, and I expect my emotions will catch up with that reason soon enough.
I hesitated sharing all this because I don't want to monopolize the storyline here or worry folks needlessly. But I also want to portray our lives as they are.
This change and so many others are certainly made smoother by you, our dear friends and family.
He'll have Sunday off from all therapy. The whole Damm family will meet on his floor for lunch to celebrate Mother's Day and Betty's birthday. We'll try to not be too rowdy!
Almost a decade ago I was part of a team that introduced a new front-end and pagination system to the Dallas Morning News newsroom. We trained hundreds of journalists on the new software. Some folks had never even held a computer mouse before.
Our team knew that change was difficult for many employees. Part of our job was handling the emotions of the transition. I was good at this job.
The past year and a half has brought drastic change to the Damm family. The impetus for the change -- a few rogue cells that multiplied and created the Damm Spot -- is awful. But for the most part, I think we've handled the resulting transitions well. We keep looking for and celebrating the silver linings.
Steve has been able to spend more time with Cooper and Katie, as he's not spending 10 or more hours a week commuting to and from work. Instead, we drive him as a family to work or, more recently, he works from home, surrounded by more love and joy than we could hope for.
We've been showered with good wishes, gifts, prayers, visits and more from the most amazing support group. At least once a day a friend or acquaintance marvels at how good you all are, how blessed we are. It is so true.
We are reminded hourly of what matters most, and most of the time we try to honor those priorities.
There are changes, though, that catch me off guard and break my heart more than I anticipated.
When Steve comes home from physical rehab, he'll need a hospital bed for safety and ease of movement. He probably needed one weeks ago, but his fall accentuated the acute need. The Zale Lipshy social worker is helping us secure one.
To get ready for the new bed, today the old bed -- the one we chose for the first home we bought, in 1998 -- was packed away. Uncle Greg and friend Jeff arrived early this morning to dismantle our bed and an antique dresser and move them to a nearby storage unit. We also moved a cabinet from the bedroom into the dining room.
A twin bed for me is in our room now, and a big open space in the middle waits for Steve's new hospital bed.
I think that I've cried more over this change than anything since Steve's diagnosis.
The change is so obvious and symbolic. I just didn't expect it to hit me so hard.
Cooper and Katie have found a silver lining already. They love the temporary open floor space and abundance of pillows laying about.
I trust that in time I'll handle this change better, too. Steve's safety and comfort are most important, and I expect my emotions will catch up with that reason soon enough.
I hesitated sharing all this because I don't want to monopolize the storyline here or worry folks needlessly. But I also want to portray our lives as they are.
This change and so many others are certainly made smoother by you, our dear friends and family.
*****
Steve looked great when we visited with him this afternoon. The physical and occupational therapists pushed him through rigorous exercises, and he was deservedly tired.
He sounds more winded today than he has recently -- maybe because of all the activity? He's on oxygen almost all the time.
He'll have Sunday off from all therapy. The whole Damm family will meet on his floor for lunch to celebrate Mother's Day and Betty's birthday. We'll try to not be too rowdy!
Friday, May 8, 2009
Reunited
Sometime yesterday UT-Southwestern lifted the restrictions on visiting children -- just in time for Cooper and Katie to visit after school today!
We have a fun evening planned -- playing Cinderella's Enchanted Slipper Game, eating dinner, watching a movie, reading bedtime stories. And lots of cuddling!
Big steps
During Steve's morning PT session, he aced walking with the help of parallel bars.So he took a spin on the floor! He used a walker and was spotted by two therapists, allowing him to walk down a long hallway. These were his first big steps since he fell almost two weeks ago.
Go, Steve, go!
Thursday, May 7, 2009
Procedure finished
Steve is back in his room on the eighth floor. The filter was placed without trouble.
He's eating a Nova lox bagel (thanks, Mary!) and watching television before he naps. ("Deal or No Deal" is on. We've never seen it before. Do contestants just choose a case to open?)
If all goes well, Steve will be able to resume physical therapy tomorrow.
He's eating a Nova lox bagel (thanks, Mary!) and watching television before he naps. ("Deal or No Deal" is on. We've never seen it before. Do contestants just choose a case to open?)
If all goes well, Steve will be able to resume physical therapy tomorrow.
Wheeled away
Transport just wheeled Steve (in his bed) to Interventional Radiology, where they'll prep him and get the filter placed. I'll update when he returns.
Waiting on procedure
Steve is still in his hospital room. We're waiting to learn what time his procedure will be. He's starting to get hungry -- he's not allowed to eat or drink anything until after the filter is placed.
*****
Yesterday I reported that the clot is in his left leg. We all thought it was, based on Steve's swollen left leg. But the resident, Dr. C, triple-checked the radiology report that identifies the clot in the right leg.
We're shocked. There are no visible symptoms on his right side.
We are especially thankful that Dr. N ordered a scan on both legs.
*****
UPDATE: Dr. G, the doctor who will place the filter, just visited with us. The procedure will begin around 11:30 a.m. and will last about an hour.
He will be under moderate sedation; the incision will be in his neck. A catheter will be used to move the device to the correct place in his groin.
*****
Yesterday I reported that the clot is in his left leg. We all thought it was, based on Steve's swollen left leg. But the resident, Dr. C, triple-checked the radiology report that identifies the clot in the right leg.
We're shocked. There are no visible symptoms on his right side.
We are especially thankful that Dr. N ordered a scan on both legs.
*****
UPDATE: Dr. G, the doctor who will place the filter, just visited with us. The procedure will begin around 11:30 a.m. and will last about an hour.
He will be under moderate sedation; the incision will be in his neck. A catheter will be used to move the device to the correct place in his groin.
Wednesday, May 6, 2009
IVC filter for DVT
Sometime tomorrow Steve will undergo a procedure to have an inferior vena cava filter (IVC filter) placed in a vein in his groin area.
The IVC filter will serve as a sieve to stop a blood clot from reaching his lungs. (That would be a pulmonary embolism, and that could be deadly.)
In most cases, a blood clot like Steve's is treated with blood thinners. Blood thinners aren't an option with Steve, though, because of his need for Avastin.
Avastin is the bio-agent that has been used in conjunction with chemotherapy to stop the Damm Spot from growing. We need it to continue to extend Steve's life.
Avastin and blood thinners don't mix. The combination could cause the tumor to bleed, and that would be devastating.
So, the next logical option is the IVC filter. Its placement is not without risks, but we have to take the risks to keep the DVT away from Steve's upper body.
The procedure itself, which will be performed at Zale Lipshy, is fairly simple. It won't require general anesthesia. But there will be an incision and therefore a wound that needs to heal. Avastin slows the healing process.
The timing of this is actually as good as we could get. Steve's last Avastin treatment was two weeks ago. If he hadn't been admitted to rehab yesterday, he would have had an Avastin treatment today, making a surgical procedure much more difficult.
One of the big questions after the procedure tomorrow: How long will he need to wait until the next Avastin treatment?
The balance will be taking care of the clot and healing while also treating the tumor as aggressively as possible. Both needs are urgent.
Dr. M is in the loop with the physical rehab team and the interventional radiology team. We've defined the main goals:
1. Take care of the DVT.
2. Continue whatever physical rehab (most likely OT and upper body PT) is possible while healing from the procedure.
3. Secure another seven days of rehab at the end of this seven-day allowance.
*****
Steve is tired but in good spirits. He's on complete bed rest at least until the procedure tomorrow. (We don't yet know what time he'll be taken to radiology.)
Almost every time a new caregiver comes in to meet Steve, they ask a series of questions including, "What kind of work did you do?" They're always impressed when Steve answers in the present tense -- he tells them what work he's doing today.
Every morning when he wakes up, he thanks God for another day. I know that he'll do so again Thursday morning, thankful the gift of another day, thankful for intervention, thankful for skilled and caring hands, thankful for you all.
The IVC filter will serve as a sieve to stop a blood clot from reaching his lungs. (That would be a pulmonary embolism, and that could be deadly.)
In most cases, a blood clot like Steve's is treated with blood thinners. Blood thinners aren't an option with Steve, though, because of his need for Avastin.
Avastin is the bio-agent that has been used in conjunction with chemotherapy to stop the Damm Spot from growing. We need it to continue to extend Steve's life.
Avastin and blood thinners don't mix. The combination could cause the tumor to bleed, and that would be devastating.
So, the next logical option is the IVC filter. Its placement is not without risks, but we have to take the risks to keep the DVT away from Steve's upper body.
The procedure itself, which will be performed at Zale Lipshy, is fairly simple. It won't require general anesthesia. But there will be an incision and therefore a wound that needs to heal. Avastin slows the healing process.
The timing of this is actually as good as we could get. Steve's last Avastin treatment was two weeks ago. If he hadn't been admitted to rehab yesterday, he would have had an Avastin treatment today, making a surgical procedure much more difficult.
One of the big questions after the procedure tomorrow: How long will he need to wait until the next Avastin treatment?
The balance will be taking care of the clot and healing while also treating the tumor as aggressively as possible. Both needs are urgent.
Dr. M is in the loop with the physical rehab team and the interventional radiology team. We've defined the main goals:
1. Take care of the DVT.
2. Continue whatever physical rehab (most likely OT and upper body PT) is possible while healing from the procedure.
3. Secure another seven days of rehab at the end of this seven-day allowance.
*****
Steve is tired but in good spirits. He's on complete bed rest at least until the procedure tomorrow. (We don't yet know what time he'll be taken to radiology.)
Almost every time a new caregiver comes in to meet Steve, they ask a series of questions including, "What kind of work did you do?" They're always impressed when Steve answers in the present tense -- he tells them what work he's doing today.
Every morning when he wakes up, he thanks God for another day. I know that he'll do so again Thursday morning, thankful the gift of another day, thankful for intervention, thankful for skilled and caring hands, thankful for you all.
A new wrinkle: DVT
A blood clot (or DVT, for deep vein thrombosis) was discovered today in Steve's left leg.
Yesterday when Dr. N was examining super Steve, he noticed Steve's swollen left leg and foot. We told him that the swelling has been an issue for a few months. I told him that two sonograms revealed no clots in his leg.
Dr. N ordered a sonogram of his leg anyway, just to be cautious. (Obviously it's a good thing I'm not the one ordering -- or not ordering -- tests!)
After Steve's first physical therapy session this morning, he returned to his bed and was wheeled off to imaging. He returned an hour later in good spirits.
About 30 minutes later, Steve's nurse told us the news.
We haven't spoken with Dr. N yet to learn how the clot will be treated. The usual course of treatment is blood thinners, but I'm not sure if that will be complicated by Steve's Avastin history.
One of the side effects of Avastin (the bio-agent that Steve has been taking since late 2008) is increased risk of DVT. Steve had been scheduled for another Avastin treatment today, but we canceled that this morning, before we knew about the clot, in favor of continued therapy at Zale. I've e-mailed Dr. M and her nurse to make sure they are aware of this wrinkle.
We do know that he's on bed rest for the remainder of the day. No more physical, occupational or video game therapy (Wii-hab!). No shower.
Insurance approved seven days of rehab yesterday. We used one Tuesday just by checking in. We're using another today, in which Steve received about 30 minutes of physical therapy. (That session was great, by the way! Steve was able to walk, using parallel bars and some help from the PT. He felt some discomfort in his lower back, but he powered through and impressed the PT and me.)
One of our concerns now is that Steve is going to burn through rehab days without really getting much rehab.
When I update later, I hope to be able to report:
1. How the clot will be treated
2. What happens to Steve's precious rehab days
We take great comfort in the many prayers on Steve's behalf. And we're cheered by a new catchphrase, courtesy of Julie: Out Damm Clot!
Yesterday when Dr. N was examining super Steve, he noticed Steve's swollen left leg and foot. We told him that the swelling has been an issue for a few months. I told him that two sonograms revealed no clots in his leg.
Dr. N ordered a sonogram of his leg anyway, just to be cautious. (Obviously it's a good thing I'm not the one ordering -- or not ordering -- tests!)
After Steve's first physical therapy session this morning, he returned to his bed and was wheeled off to imaging. He returned an hour later in good spirits.
About 30 minutes later, Steve's nurse told us the news.
We haven't spoken with Dr. N yet to learn how the clot will be treated. The usual course of treatment is blood thinners, but I'm not sure if that will be complicated by Steve's Avastin history.
One of the side effects of Avastin (the bio-agent that Steve has been taking since late 2008) is increased risk of DVT. Steve had been scheduled for another Avastin treatment today, but we canceled that this morning, before we knew about the clot, in favor of continued therapy at Zale. I've e-mailed Dr. M and her nurse to make sure they are aware of this wrinkle.
We do know that he's on bed rest for the remainder of the day. No more physical, occupational or video game therapy (Wii-hab!). No shower.
Insurance approved seven days of rehab yesterday. We used one Tuesday just by checking in. We're using another today, in which Steve received about 30 minutes of physical therapy. (That session was great, by the way! Steve was able to walk, using parallel bars and some help from the PT. He felt some discomfort in his lower back, but he powered through and impressed the PT and me.)
One of our concerns now is that Steve is going to burn through rehab days without really getting much rehab.
When I update later, I hope to be able to report:
1. How the clot will be treated
2. What happens to Steve's precious rehab days
We take great comfort in the many prayers on Steve's behalf. And we're cheered by a new catchphrase, courtesy of Julie: Out Damm Clot!
Too fun not to share
A therapist is visiting with Steve right now. He'll be working on Steve on some physical and cognitive exercises. Sometimes they'll use a Wii for balance and hand-eye coordination.
They call it it Wii-hab.
They call it it Wii-hab.
Tuesday, May 5, 2009
Steve at Zale
After we got the call this afternoon, we sprang into action. Steve called his mom, who drove up right away to take care of napping Katie and Cooper, who would be coming home from school soon. I gathered Steve's belongings and called the Bassens for help getting Steve into the car.
We pulled into the Zale Lipshy valet area, and the intake nurse arrived to help Steve out of the car, into a wheelchair and onto the rehab floor.
We spent the next couple of hours going over medications, schedules, expectations and other introductory details. We met Dr. N, the physician who will oversee Steve's treatment, and his resident, Dr. C.
We learned that because of swine flu fears, children younger than 12 aren't allowed on patient floors. I had had big hopes of the four of us eating dinner together and reading bedtime stories in Steve's room. We'll just have to move the visits downstairs to the lobby.
A respiratory therapist stopped by to check Steve's pulse-oxygen levels and start his breathing exercises. She is the same RT who helped Steve at St. Paul a month ago. She chatted with us for a while, describing her husband's recovery from cancer 13 years ago. And she shared her belief that a good attitude is essential to healing.
We, of course, agree.
I left after Steve finished dinner. We've decided that during this stay I will spend nights at home so that we can both rest well.
I'll return early Wednesday morning to meet the physical and occupational therapists as well as the social worker, who will help with arrangements for home accommodations.
*****
One of my high school friends, Angela, delivered dinner to the house tonight. She made Steve's favorite dessert, pecan pie.
When I told Steve about the dessert, he reminded me of one of our favorite grocery store stories.
The week of our first Thanksgiving together, I wanted to make chocolate pecan pie to take to a dinner. I'd never made any kind of pecan pie before, so the ingredients -- as simple as they are -- were new to me.
Steve and I shopped together, and we couldn't find the Karo Syrup. We couldn't even pronounce Karo. A fellow shopper took pity on us and led us up and down aisles, saying loudly, "Where's the Kay-ro? Where's the Kay-ro?"
We laugh about that moment every time we see a bottle of corn syrup or talk about pecan pie. (And sometimes we recall that I burned the pie. There were a few baking disasters that first year.)
We pulled into the Zale Lipshy valet area, and the intake nurse arrived to help Steve out of the car, into a wheelchair and onto the rehab floor.
We spent the next couple of hours going over medications, schedules, expectations and other introductory details. We met Dr. N, the physician who will oversee Steve's treatment, and his resident, Dr. C.
We learned that because of swine flu fears, children younger than 12 aren't allowed on patient floors. I had had big hopes of the four of us eating dinner together and reading bedtime stories in Steve's room. We'll just have to move the visits downstairs to the lobby.
A respiratory therapist stopped by to check Steve's pulse-oxygen levels and start his breathing exercises. She is the same RT who helped Steve at St. Paul a month ago. She chatted with us for a while, describing her husband's recovery from cancer 13 years ago. And she shared her belief that a good attitude is essential to healing.
We, of course, agree.
I left after Steve finished dinner. We've decided that during this stay I will spend nights at home so that we can both rest well.
I'll return early Wednesday morning to meet the physical and occupational therapists as well as the social worker, who will help with arrangements for home accommodations.
*****
One of my high school friends, Angela, delivered dinner to the house tonight. She made Steve's favorite dessert, pecan pie.
When I told Steve about the dessert, he reminded me of one of our favorite grocery store stories.
The week of our first Thanksgiving together, I wanted to make chocolate pecan pie to take to a dinner. I'd never made any kind of pecan pie before, so the ingredients -- as simple as they are -- were new to me.
Steve and I shopped together, and we couldn't find the Karo Syrup. We couldn't even pronounce Karo. A fellow shopper took pity on us and led us up and down aisles, saying loudly, "Where's the Kay-ro? Where's the Kay-ro?"
We laugh about that moment every time we see a bottle of corn syrup or talk about pecan pie. (And sometimes we recall that I burned the pie. There were a few baking disasters that first year.)
Admission
We've just received the call that insurance has approved Steve's physical rehab and that a bed is available. So we're packing up and getting ready to take Steve to Zale Lipshy.
I'll update sometime this evening, after he's settled. Thanks for checking on Steve and for your prayers!
I'll update sometime this evening, after he's settled. Thanks for checking on Steve and for your prayers!
Monday, May 4, 2009
Home
We're still home. I spoke with the case manager with Zale this afternoon. She had spoken with someone at UHC, who said something like, "You've really had the runaround, huh?"
Yes.
And yet, there is still no admission.
I left messages and pages with Dr. M's team. No word.
Steve, at least, has had no more upper respiratory symptoms. The chest crackling is gone. His temperature escalated yesterday but dropped again -- and never got above 100.
His mobility remains the same. He and I have figured out how to move him around reasonably well, and I continue to call for help when we're too tired. (Tonight might be one of those nights.)
Katie will be home from preschool all week. Her school is in Carrollton, and at least half the teachers have children in Lewisville ISD, which is closed for swine flu for the week. So, our preschool is closed for lack of teachers and safety, in case siblings attend one of the flu schools.
I had been worried about how I would make the 50-minute roundtrip drive to preschool in the mornings -- I can't leave Steve alone for that long -- but that problem is solved this week.
Perhaps tomorrow I'll update with admission news?
Yes.
And yet, there is still no admission.
I left messages and pages with Dr. M's team. No word.
Steve, at least, has had no more upper respiratory symptoms. The chest crackling is gone. His temperature escalated yesterday but dropped again -- and never got above 100.
His mobility remains the same. He and I have figured out how to move him around reasonably well, and I continue to call for help when we're too tired. (Tonight might be one of those nights.)
Katie will be home from preschool all week. Her school is in Carrollton, and at least half the teachers have children in Lewisville ISD, which is closed for swine flu for the week. So, our preschool is closed for lack of teachers and safety, in case siblings attend one of the flu schools.
I had been worried about how I would make the 50-minute roundtrip drive to preschool in the mornings -- I can't leave Steve alone for that long -- but that problem is solved this week.
Perhaps tomorrow I'll update with admission news?
Sunday, May 3, 2009
Monday
Here is the current get-Steve-into-physical-rehab plan.
1. We wait to hear from UHC if they have approved his admission.
2. If we don't get an answer by noon Monday, then Dr. M will work on admitting him to Zale Lipshy. (This may take some careful wording/finagling. Oncology doesn't admit to Zale; the team admits to St. Paul. But we don't want him exposed to all the flu, pneumonia, who-knows-what-else germs floating around St. Paul.) Then we'd work on getting him transferred from a regular floor to the physical rehab floor.
3. Either way, he should be at Zale sometime Monday.
This could all be complicated by a new symptom. Steve developed a crackle in his chest overnight, which gave him fits trying to sleep. He has no fever right now. I'm checking him often. If he starts getting chills or a fever, we'll call Dr. M and then an ambulance. Then we'll have to deal with St. Paul -- we'll have no choice.
I'll update later today if there's news. I hope, though, that I don't need to update until tomorrow, with the good news that Steve is on his way to Zale.
1. We wait to hear from UHC if they have approved his admission.
2. If we don't get an answer by noon Monday, then Dr. M will work on admitting him to Zale Lipshy. (This may take some careful wording/finagling. Oncology doesn't admit to Zale; the team admits to St. Paul. But we don't want him exposed to all the flu, pneumonia, who-knows-what-else germs floating around St. Paul.) Then we'd work on getting him transferred from a regular floor to the physical rehab floor.
3. Either way, he should be at Zale sometime Monday.
This could all be complicated by a new symptom. Steve developed a crackle in his chest overnight, which gave him fits trying to sleep. He has no fever right now. I'm checking him often. If he starts getting chills or a fever, we'll call Dr. M and then an ambulance. Then we'll have to deal with St. Paul -- we'll have no choice.
I'll update later today if there's news. I hope, though, that I don't need to update until tomorrow, with the good news that Steve is on his way to Zale.
Saturday, May 2, 2009
Thank you, See Spot Runners!
A devoted group of Run for Steve/See Spot Run runners arrived at White Rock Lake early this morning, braved the muggy conditions (and poor porta-potty conditions) and ran five miles in honor of Steve.
The White Rock 'n' Roll was the third official Run for Steve race since amazing Liz organized us last year.
Today's runners:
Allison E.
Andy L.
Carlin M.
Holly B.
Liz S.
Meghan D.
Paul D.
Randy L.
Sharon G.
We are both incredibly touched by your support! (And we know there were other sweet running friends who couldn't make it today but were there in spirit.)
We understand that plans are in the works for a 5K/15K in July. It's never to late to join the team! E-mail Liz for details on the next race.
The White Rock 'n' Roll was the third official Run for Steve race since amazing Liz organized us last year.
Today's runners:
Allison E.
Andy L.
Carlin M.
Holly B.
Liz S.
Meghan D.
Paul D.
Randy L.
Sharon G.
We are both incredibly touched by your support! (And we know there were other sweet running friends who couldn't make it today but were there in spirit.)
We understand that plans are in the works for a 5K/15K in July. It's never to late to join the team! E-mail Liz for details on the next race.
Friday, May 1, 2009
Continuing to wait
I spent a lot of time on the phone and on hold today, trying to get the admissions process moving. I was patient but firm. I used phrases such as, "Before we begin, I should let you know I'm very frustrated," and "What other recourse do we have?" and "We are concerned about safety at home."
I had no luck. Neither did the case manager at Zale.
(I did learn that UHC has a Rapid Response Team, which I'm going to ask for every time now, and that you apparently have to ask three times for a better answer before a representative will give you one. When it was clear that I wasn't going to hang up, the customer service representative was more responsive, though certainly not helpful.)
I think we have two options:
I regret that with the physically and emotionally wearing week we've had, I've decided to back out of running the 5-mile race at White Rock with friends Saturday morning in honor of Steve. We can't wait to see photos of the Run for Steve team and hear about the great show of support for super Steve!
I had no luck. Neither did the case manager at Zale.
(I did learn that UHC has a Rapid Response Team, which I'm going to ask for every time now, and that you apparently have to ask three times for a better answer before a representative will give you one. When it was clear that I wasn't going to hang up, the customer service representative was more responsive, though certainly not helpful.)
I think we have two options:
- Continue to wait for UHC to approve admission to rehab, which wouldn't happen until Monday at the earliest
- Push for admission to a regular hospital floor and then transition Steve to rehab, which could happen this weekend if Dr. M agrees
I regret that with the physically and emotionally wearing week we've had, I've decided to back out of running the 5-mile race at White Rock with friends Saturday morning in honor of Steve. We can't wait to see photos of the Run for Steve team and hear about the great show of support for super Steve!
Update
We're still home. Thankfully, Steve is doing OK. He slept well, and I was able to get him out of bed and up for the day on my own. (I definitely need help at night, when Steve is most fatigued and has run low on right-side strength.)
I spoke with a benefits employee with Steve's work this morning. She says that the United HealthCare account manager says Steve's stay has been approved. There's an admission number in the system.
Then I called the case manager with UT-SW who is trying to get Steve admitted. She says the that the admission number in the system doesn't really mean anything.
She also says it's highly unusual -- as in she's never seen it happen -- for a patient to be admitted to rehab from home. In addition, as of yesterday, a nurse case manager at UHC hadn't yet been assigned to Steve's case.
The case manager is going to recommend to Dr. M that, if we haven't received approval by 2 p.m. today, she admit Steve to the hospital for weakness and falls. He'd stay in the hospital for two days or so and then be transitioned (we hope!) to rehab.
So we continue to wait. We are thankful that Steve remains comfortable at home and that we've been able to keep him safe. Right now he's working and listening to Katie and best friend Noe chat in the playroom, just a few feet away. From the dining room table he can see activity on our street and glimpse pretty spring flowers and a full, healthy tree in the front yard.
I spoke with a benefits employee with Steve's work this morning. She says that the United HealthCare account manager says Steve's stay has been approved. There's an admission number in the system.
Then I called the case manager with UT-SW who is trying to get Steve admitted. She says the that the admission number in the system doesn't really mean anything.
She also says it's highly unusual -- as in she's never seen it happen -- for a patient to be admitted to rehab from home. In addition, as of yesterday, a nurse case manager at UHC hadn't yet been assigned to Steve's case.
The case manager is going to recommend to Dr. M that, if we haven't received approval by 2 p.m. today, she admit Steve to the hospital for weakness and falls. He'd stay in the hospital for two days or so and then be transitioned (we hope!) to rehab.
So we continue to wait. We are thankful that Steve remains comfortable at home and that we've been able to keep him safe. Right now he's working and listening to Katie and best friend Noe chat in the playroom, just a few feet away. From the dining room table he can see activity on our street and glimpse pretty spring flowers and a full, healthy tree in the front yard.
Subscribe to:
Posts (Atom)
