Monday, December 29, 2008
He hasn't had a fever in a couple of days. He's had no adverse reactions to the antibiotics. His left side is still sluggish, but he's able to walk and move his left arm. He felt well enough to attend Sunday school and church yesterday -- the first time in more than a month.
We both are comfortable with the PICC line/antibiotic process -- it's become routine. Every morning and every night, I clean the line with saline solution (salt water, as Katie calls it) and attach the bag of Vancomycin (the good buggies that are chasing away the bad buggies, as Katie says). About two hours later, I remove the bag and flush the line with more saline and then Heparin.
The home health RN was here Friday to apply a new dressing around the PICC line. She'll return to do it again Thursday.
On Friday, Steve will return to the UT-SW cancer center to receive the next dose of Avastin and CPT-11, two weeks and a day behind schedule. We're both eager to get back on track.
Sunday, December 28, 2008
I never did get to the rest of the gifts, the ones I bought after Thanksgiving. Liz and Holly came to the rescue.
On Monday night, Liz came to the house and helped me sort presents. She took them all, plus some supplies, and wrapped them the next day at her house (before she even wrapped her own family's gifts). Then she handed them off to Holly, who spruced them up with beautiful ribbons and bows.
Holly delivered them all to our house on Christmas Eve, putting them under the tree before we came home.
Stephen and Leslie had been offering to do anything, so I asked them to be Santa for Margie. They delivered more toys than could fit in her stocking! Cooper was especially excited that Santa had been so generous.
Apparently I can handle at least three! One day this week, I bought one on my way into the hospital. Sharon delivered another in the early afternoon. Then Betty and Uncle Jim brought another as a sweet surprise in the late afternoon.
I drank all three and was still able to sleep that night. I don't expect to re-create the experiment any time soon.
Saturday, December 27, 2008
On Christmas Eve, Steve sat in the dining room as I removed tubing from his first dose of at-home antibiotics. Katie sidled up next to him and gave him a hug.
"Daddy, I missed you," she said. "I'm happy you're home."
The week that Steve was in the hospital was crazy at home. The kids and I often weren't home, and when we were, we dashed in and out. We're not the neatest family under the best circumstances; in times of chaos, we are even messier.
I managed to wash and dry clothes but had little time to fold and put away laundry. Sometimes I loaded the dishwasher. I never made the kids' beds. My usual piles of paper started to topple. Throw in extra Christmas goodies and cards and end-of-semester schoolwork, and it was just a disaster.
Meghan, Julie and Allison intervened. When Meghan was here taking care of Margie, she took care of laundry and clutter.
The night before we came home, Julie and Allison spent much of the evening here, going from room to room to tidy. They are both busy moms who work full time outside their homes; they both spent precious time two days from Christmas to make sure our home looked especially cozy when we returned.
Uncle Jim spent much of his vacation taking care of his niece and nephew. He picked them up from Aunt Mel and Uncle Greg's house in Anna on Monday and brought them to Frisco. He managed to prepare dinner, clean up after a Katie accident, take care of Margie, run errands, fill my car with gas and more, all in one night.
He continued to help Tuesday and Wednesday, when the kids moved in with Jim and Betty. The three of them juggled Christmas preparations while keeping Cooper and Katie well entertained, well fed and well loved.
Thursday, December 25, 2008
We were dangerously close to spending another five days at St. Paul.
Apparently there was no way that he would be allowed to be released without the supervision of a home health agency, despite the solution the case manager and I settled on (me administering drugs on my own). We would have been there until Monday.
The case manager finally found an agency that was able to offer a nurse. My little impassioned speech apparently had moved the case manager, who in turn softened the heart of an agency's director, who in turn convinced one of her registered nurses to add an extra stop to her already-busy Christmas Eve schedule. (Either that or Dr. M raised her voice loud enough to move the case manager.)
About an hour after we arrived home Wednesday, a courier company dropped of a big bag of drugs and supplies.
A couple of hours later, our home health RN appeared. We reviewed policies, signed paperwork and then received infusion instructions.
The at-home process is much simpler than the hospital process. The antibiotic is premixed and in a fancy little bag that pushes out the drug without the use of an infusion pump. It doesn't even rely on gravity; Steve can just carry the plastic ball of Vancomycin in his pocket while it's connected to his PICC line.
My biggest challenge right now is releasing bubbles from the syringes of saline and Heparin. I hold the syringe up and push the plunger to push out the bubbles. So far, I push a little too far every time, and shoot clear liquid straight up to the ceiling. If I don't move out of the way, the liquid drips back down on my head a few minutes later.
Our friend and neighbor Tisa, who is a home health nurse manager for another company (that doesn't contract with our insurance), is my backup. She was here for the first training session, for the first time I removed the tubing, and again at 6:30 a.m. today to supervise Steve's morning infusion. We are comforted knowing we can call at any time for help if necessary.
Steve continues to express how blessed he is to be home. He's tired and running a slight fever (not high enough to report yet), but he's still happier this Christmas than any other.
Some of you may have already read a column I wrote for Briefing last week. I want to include it here today, as a reminder of everyday miracles on this very special day.
Miracle's size has little to do with its impact
How do you define a miracle?
Do you need a big production – oil that lasts longer than logically possible, burning bush not consumed, thousands fed with just a handful of fish and two loaves of bread?
Or do you see little signs of a higher power and count them as miracles?
For a year, I have been praying for a big miracle: that my husband Steve be cured of brain cancer, that every last one of the tumor cells die and that there be no recurrence.
It's a bold request.
I have also been collecting miracle stories: the aunt who should have died of a brain aneurysm but still hasn't; the child whose cancer is inexplicably in remission; the mom who was given six months to live but is active a decade later.
As we wait for Steve's big miracle, I am working on being mindful of the less flashy miracles.
Our minister spoke of them this week, quoting the United Methodist belief: "The gift of miracles does not focus on the extraordinary, but sees the miraculous in the mundane and normal. Living in the spirit of the miraculous, people see God in nature, in relationships, in kind acts, and in the power of love."
Just after Thanksgiving, we learned that Steve's tumor, which had been dormant for a few months, had started growing again. That diagnosis required a quick response; within 48 hours he started a new chemotherapy regimen.
As we sat together in the infusion room and I watched clear liquids drip into a port in Steve's chest, I marveled that such a small quantity of fluid contained the power to extend his life. And as days passed and we watched for adverse reactions that never came and instead saw rapid improvement of his motor skills, I was incredibly thankful.
Surely there were miracles involved in that process – in the research that allowed the drugs to be developed, in his weak body's ability to not only endure the toxins but also triumph with increased strength and mobility.
The improvements came just in time.
We were able to attend the Neiman Marcus Adolphus Children's parade as a family, cementing a tradition started last year.
And on Sunday, Steve was able to watch friends, family members and even some strangers cross the Dallas White Rock Marathon finish line in his honor.
It was a beautiful day. He was surrounded by overlapping circles of loved ones, all wearing identical bright yellow shirts. He watched with pride as people performed athletic tasks that were once easy for him but are now impossible.
He smiled so big and so often that his face hurt.
Surely there were miracles involved in that day – in gathering that many people from across the state safely, in the training that each runner endured, in the ideal conditions and logistics that allowed Steve to navigate Victory Park and comfortably sit outside in mid-December.
Early that evening, we walked outside our front door to a crowd of about 50 friends singing Christmas carols for our family. It was the perfect end to a perfect weekend.
Later that night, Steve, who has an inoperable brain tumor and has battled courageously for 12 grueling months, declared the day "miraculous" and himself "the luckiest man on Earth."
It's not the big, bold miracle I pray for all day, every day.
It is the best miracle I've never asked for.
Tyra Damm is a Briefing columnist. E-mail her at email@example.com.
Merry Christmas, dear friends!
Wednesday, December 24, 2008
I administered the two last doses of IV antibiotics. It's not difficult, but there are many steps to remember -- reconstituting the drug, clamping, unclamping, releasing air, plugging, etc. Yesterday's RN assured us that I won't be able to do anything to hurt Steve, and I know there are a few of you out there I can call on for help or advice.
We had a moment of concern last night/early this morning. The drug schedule has stretched over the week. He was receiving doses every six hours, then every eight. Last night they changed it to every 12 hours -- more medicine, less frequently. That meant we needed to wake at 1 a.m. to give the drugs and 3 a.m. to remove the IV.
One of the rounding doctors this morning says we can be flexible with the times, so we're not stuck with 1 a.m. and 1 p.m. for the next two weeks. We'll choose a time that's more compatible with our need to sleep when Cooper and Katie sleep.
Today's RN seems to be on a mission to get Steve out of here before noon. We're waiting on the case manager to stop by with more information on equipment and drugs for home.
We hope you all are enjoying Christmas Eve!
Tuesday, December 23, 2008
About 1:30 p.m. today a case manager stopped by the room to get the home health process started.
Started? Really? We've known since Friday that he would require help at home receiving IV antibiotics.
The case manager didn't exude confidence that everything would be in place by tomorrow. She also said she was leaving early today. Around 3ish.
My unsettled feeling heightened.
About an hour later I stopped by her desk to inquire about progress. She seemed less certain that Steve would have home health in place on Christmas Eve. It's been difficult to get staffing this week, as many home health nurses are on vacation.
My impassioned speech in reply was something like this:
"I can't think of anything more important than getting him home in time for Christmas. He was hospitalized last year on Christmas, in the middle of his cancer diagnosis. We have a 3-year-old and 7-year-old at home who desperately want to see their daddy. Steve's morale will be devastated if he has to stay in the hospital because there isn't enough staffing to administer IV drugs."
(I didn't tell her that last night, as Cooper was falling asleep, he asked me to pray aloud that Daddy be home for Christmas. And that he's been assuring Margie the dog that Daddy would be home for Christmas. And that Katie tells me every day that she's sad that Daddy is in the hospital.)
Then we started working on other solutions. Perhaps the nursing staff here could teach me how to administer the drugs. (As a bonus, there are no needles required!)
I returned to the room and then today's RN arrived. She's going to let me give him the next dose of antibiotic in the room, under her supervision. I'm going to ask to do it every time so that I'm comfortable (and Steve, too!) with the process.
I'm supposed to follow the SASH method: saline, antibiotic, saline, heparin. (Today's process will be a little different than tomorrow -- today he has a short IV line, tomorrow he'll have the PICC line.)
We're starting to feel a little better about a Christmas Eve solution. The nurse is going to start inquiring about the necessary equipment and pharmacy's role. I'll continue to be assertive until we're certain.
Steve looks good today. Yesterday he started walking around the third floor. Today he made two laps and even ventured into the gift shop. He's wobbly, but his left knee isn't locking as it has in the past. He's eating really well, thanks to many welcome deliveries of meals and treats. He's still running a huge sleep deficit, but we'll take care of that when he gets home.
He continues to show no sign of active infection. His temperature is back to his "normal" 97. His cough and wheezing are completely resolved.
As always, we're gaining strength from your prayers and ours, your faith and ours, your love and ours.
We're also enormously thankful for help in the past 24 hours, during this especially busy season:
Jim and Betty: meals, caring for Cooper and Katie, arrangements and rearrangements for Christmas celebrations
Uncle Jim: caring for Cooper and Katie, handling the ensuing chaos (fun chaos, but still) and helping around the house
Mel and Greg: caring for Cooper and Katie
Mary MT: meals and Christmas treats
Sharon: afternoon Starbucks and snacks
Andy and Julie: gift hiding, heroic package delivery and problem solving
Liz and Holly: gift wrapping
Allison: grocery shopping, card addressing
Pastor Andy: visit
Geneva: dinner and gift delivery
Meghan: caring for Margie and the house
Monday, December 22, 2008
Steve's chest port was successfully removed in his room.
The less-than-good news:
He'll be at St. Paul until Wednesday. (At least it's Christmas Eve and not Christmas Day!)
The same doctor who placed the port in his chest two weeks ago arrived in his room to remove it. I tried to stay in the room for moral support, but as soon as I saw the needles come out, I had to leave. (I am not good with needles or stitches or blood.) Betty was here, though, and held his hand during the entire procedure. He didn't feel a thing after the Lidocaine shot, which numbed the site.
Just before the removal, Dr. M called the room to visit with me.
She is reluctant to have a new line of any kind placed right now, for fear that the bacteria would just latch on and start reproducing again.
Instead, he'll receive the antibiotic through regular IVs the rest of today and all day tomorrow. (This is no easy task for Steve, whose veins were already bad pre-cancer but are just ravaged after a year of chemotherapy, steroids and other chemicals. As I'm typing, his nurse is trying her best for a good stick. It's not happening so far. The charge nurse is going to be called in next.)
By Wednesday morning, he should be OK to receive a PICC line. And then he'll be able to go home and continue receiving the bacteria-fighting drugs with the help of home health care.
Steve is handling the news well, though he would much rather be packing for home right now than settling in for two more nights.
It couldn't come any sooner, as Steve has been "NPO" since midnight -- he couldn't eat or drink anything except his necessary medication. With the new plan, he's been given permission to eat and drink.
In about an hour, a doctor will come to the room to remove the port from the right side of his chest. From what we understand, a procedure room isn't available. Everyone keeps reassuring me that the environment will be sterile.
Later today, another team will whisk him away for a PICC line insertion. PICC stands for peripherally inserted central catheter. It will be placed in his arm and provide access for IV drugs for now.
Dr. M was not comfortable with the hematology plan to insert a new port today, for fear of re-infection. We haven't actually seen her yet today but have corresponded via e-mail. She'll stop by sometime this afternoon so we can discuss the PICC line and future port placement.
There is a chance that if everything goes smoothly, he'll get to go home today. We're both thinking tomorrow is more likely but would love to be surprised!
Sunday, December 21, 2008
MRSA is possibly the meanest form of staph. Most antibiotics are powerless in its path.
The antibiotic Vancomycin, which he has been taking via IV since Thursday, is often effective in fighting MRSA. He'll continue receiving that drug.
There are some precautions in place for visitors. The hospital recommends that anyone who touches Steve wear a mask, robe and gloves. That seems to be more for the visitor's protection than the other way around. The nurse says that as long as you don't hug all over him, you should be safe. I know that he's irresistible, but we'll have to restrain ourselves for now!
The current plan is to remove the port from the right side of his chest then have a new port placed on the left side of his chest.
The staff here is working on getting him on the surgery schedule for Monday. There is a slight chance he could go home Monday; Tuesday seems more likely.
After he gets home, a home health care service will be responsible for administering the antibiotics through the newly placed port.
Steve is just wiped out. He's not sleeping well here (though right now he is taking a little nap) -- but that's almost always the case in hospitals.
The kids and I arrived home last night to find that Julie had worked her magic -- folding laundry, cleaning dishes, making beds, straightening piles. She and Meghan are in charge of Margie (the dog) while we're gone.
Uncle Jim kept Steve company this morning (and Jackie and the Earwoods dropped by) while Cooper, Katie and I were at church for the last Sunday in Advent.
Katie and fellow preschool singers were adorable during the prelude. Cooper and I had a front-row seat for the singing and wiggling.
They are now with Aunt Mel, Uncle Greg, Brooke and Molli for a cousins sleepover.
I'm staying the night at St. Paul so that I don't miss rounds in the morning or Steve's surgery.
We appreciate your continued prayers.
Saturday, December 20, 2008
A couple of medical teams have visited -- hematology/oncology and infectious disease. We are continually reminded that medicine is a science with some wiggle room. One team focuses on one problem, set of data, expected outcomes. The next team focuses on another. They may communicate with one another, but sometimes that's not obvious to the patient.
Here's what we think we know:
1. The bacteria is a form of staph, based on what the infectious disease attending, Dr. S, said. We don't know specifically which strain of staph.
2. A blood sample taken yesterday did not show signs of bacteria. I don't think this means it's gone altogether, but it's still good news.
3. Infectious disease recommends that Steve's chest port be removed. (Dr. S says that there's no way to sterilize the plastic once it's in. He could be on antibiotics for three months to keep the staph away, but as soon as he stops the antibiotics, the staph would return.)
4. Another chest port could be placed. Or a PICC line, a semi-permanent IV line, could be placed in his arm.
5. He'll most likely stay at St. Paul until Monday.
Steve's spirits are good. He's eating really well and enjoying short visits and silly movies.
Will visited for a few hours last night, bearing ice cream and the movie Stepbrothers.
Cooper, Katie and I arrived this morning. The kids have handled the past few days well, but they were obviously missing their sweet Daddy. They had bed rides, pushing all the buttons for maximum fun; watched Enchanted in bed; ate ice cream and drank chocolate milk raided from the refreshment pantry; and walked around the campus with our friend Stuart and his daughter, Hannah.
Jim and Betty picked them up for lunch and an afternoon of Grandma and Papa time.
We took advantage of the quiet time; Steve and I rested and napped off and on. Sharon brought lunch and treats and brightened the room.
I'm headed north soon. The kids and I will sleep at home, and Katie will sing with fellow preschoolers at church in the morning.
We have a long prayer list. We want Steve to recover quickly and completely from this latest episode. We also want him home and healthy for Christmas this year. It's hard to forget that last year we spent most of Christmas Day in the emergency room and then a hospital room.
We are confident, though, that no matter where he is, we will fully experience the spirit and joy of Christmas.
Friday, December 19, 2008
Two samples were drawn -- directly from the new port in his chest and from his arm. Both samples showed bacteria. The working theory is that it's the port's fault. Perhaps a tiny bit of bacteria was pushed into the port during infusion or a blood draw, and then the cell just started doing what cells do -- multiplying.
Damm port. (Ha! Damm humor just never gets old.)
It will take more lab work and more time to determine the exact strain of bacteria. We do know that it's gram-positive cocci (it showed up blue under the microscope and it's round). That alone tells the doctors which antibiotic he should continue to take for now. Yesterday he was receiving two different umbrella antibiotics; now he's receiving just one.
When lab results show which bacteria it is, doctors will know precisely which antibiotic to give him.
He will require two weeks of IV antibiotics. Thank goodness that doesn't mean he'll be here for two weeks.
Steve will be here until at least Saturday, maybe until Sunday. While he's here, the staff will be arranging for home health care so that he can receive the IV drugs at home.
Dr. G, the attending oncologist/hematologist, recommends that Steve not resume chemotherapy treatment until the end of the two-week treatment.
He explained that there are few things as scary as a brain tumor. But in the short term, bacteria in the blood is scarier.
Steve is feeling so much better than yesterday. He is sitting up without assistance, able to walk slowly, eating huge portions, laughing, asking questions, charming the nurses.
Jim reports that he slept well on the cot. After Betty arrived, he left to get ready for a meeting. Then Katie and I arrived. Katie cuddled with her Daddy for a while, and then we went on a little adventure.
Both she and Cooper were born on the fifth floor here. Katie loves babies, so I took her to labor and delivery to find some newborns. We saw four tiny babies -- three sleeping, one screaming. Then we visited with the nurses. Katie twirled in her Christmas dress and talked about being 3.
Betty took Katie back to her house, and I've been with Steve ever since.
Just before Layne arrived with pizza for lunch, a technician arrived for an in-room echocardiogram. She spent about 30 minutes capturing images of his heart and supporting systems. It was fascinating lunch entertainment.
Today is Cooper's last day of school before the new year; it's also his winter party. After the unsettled week at home, I didn't want him "alone" at the party. Uncle Greg left work early today to be his adult, plus Holly left her own boys' parties to check in and take photos.
Cooper, with Uncle Greg in back
1. Bacteria caused Steve's sudden illness.
2. More lab time is needed to identify the exact strain.
3. With that information, the best antibiotic will be given.
4. Steve will stay at St. Paul tonight and maybe longer.
5. He'll require two weeks of IV antibiotics at home.
Thursday, December 18, 2008
Plus, his temperature was 102.
His RN did the best she could with limited instructions. I wandered the floor, asking questions, then paged and spoke with Dr. M about the lack of a plan.
I had to leave before anything could be resolved, and I was not comfortable. Steve was in good hands, though -- Mary M.T. was left in charge as I drove north to pick up Katie and eventually Cooper.
Mary called about an hour after I had left to report progress. He had received drugs and was on his way to imaging for the chest scan. (They're looking for something that an X-ray might have missed.)
Betty then arrived to relieve Mary. Then Sharon arrived with dinner for Steve and Betty. (We love many aspects of St. Paul but know from experience that the food there is awful. Really inedible.)
After Sharon left the hospital, she called to tell me that Steve was in great spirits -- he was cheerful, completely lucid and able to move his left arm. Oh, what a difference 12 hours, rest and IV antibiotics make!
I am home with the kids, who are asleep after their exciting day. (Katie sang in her preschool program and celebrated Christmas with her class. Cooper spent the early morning with friends and the whole afternoon at the Bassen home.) Steve is in his hospital room. Betty will be with him until Jim can arrive (after an evening board meeting). Jim will spend the night -- and sleep, we hope -- on a sad little cot.
Big thanks to Frisco paramedics, Layne, Liz, Holly, Bob, Andy, Zita, Julie, Pastor Andy, Mary M.T., Aimee, Carol, Angie, Kevin, Sharon and Melissa S. for help today.
We look forward to some answers (or at least eliminated culprits) tomorrow and to Steve's continued progress.
Because of the size of the room, Steve's exhaustion and uncertainty about what ails him, we'll need to limit hospital visits. Please e-mail me (tyradamm(at)gmail.com) or call my cell if you'd like to arrange a visit.
Before bed he had a fever of 100.2, which is equivalent to about 102 (the steroids he takes masks a fever).
We called Dr. M, who advised him to take Tylenol and wait to be examined until morning. (He was scheduled for his second dose of chemotherapy at 9 a.m. today.)
He slept poorly and continued to lose control of his left arm. At 5 a.m., his fever was 103 -- the equivalent of 105.
We talked with Dr. M again, who advised us to call an ambulance so he could be seen immediately.
We were able to request transport to St. Paul -- a huge victory. The nearest major hospital is Plano Presbyterian, which is a fine hospital but not part of the UT-SW system. We wanted him here so that records would be available and so that we would be able to see Dr. M and her team.
The kids were still sleeping when the ambulance and fire truck arrived. We are thankful that they didn't have to see the bright lights, which looked frightening in the foggy dark sky.
I called Steve's parents and asked them to be at St. Paul to meet him. Layne came over to help me with the kids, who woke earlier than usual. Layne took Cooper to his house and then to the Bassen house, and he arrived at school in plenty of time and with good spirits, sources say.
I took Katie to Andy and Zita's. Zita cared for her and dressed her for the Christmas program and party at preschool.
Andy drove with me in the dark fog, and we arrived at St. Paul in time to relieve Jim and Betty, who attended Katie's program.
Steve has been in an uncomfortable ER bed since he arrived -- the bed is much too short for his 6-foot-1-inch frame.
The staff took a chest X-ray, which came back clear. They took blood samples; results will take 24 hours.
His temperature is lower, though it has fluctuated and he is experiencing chills right now.
The problem could be an infection at the port site in his chest. The skin isn't swollen, red, warm or painful, though. He could have a random virus.
We are waiting for a room to open upstairs. He'll be officially admitted then and will stay at least overnight.
There is no possibility that he'll receive his chemo treatment today. There is a slight chance he'll receive it Friday. Saturday and Sunday aren't options (the oncology clinic is closed). We desperately pray that he'll receive it by Monday. We're not comfortable waiting, giving the tumor room to grow, but we also understand the importance of waiting until his body can better handle the powerful drugs.
He is so tired and so weak. Some of that may be because he didn't take his normal morning medications until 1 p.m. -- the steroids, Diamox and Provigil are essential.
He napped some this morning and appears to be sleeping right now.
1. Steve's high fever required quick attention.
2. Blood test results should give us a better idea of the source of the infection.
3. He will spend at least tonight at St. Paul.
Of course, we welcome your prayers for his health and strength and for wisdom for the medical team.
Wednesday, December 17, 2008
After we watched the final See Spot Run team member cross the finish line, Steve and I received and gave more hugs and then headed north for lunch and home.
Jim and Betty took Cooper and Katie back to their house, so we had a few hours of quiet time to rest and recover.
Liz and Kris (pictured above) had asked that the whole family be home by 5 p.m. for a surprise. And I was told to not be in my pajamas already!
Jim, Betty and Uncle Jim brought the kids home just in time for a great treat -- almost 50 friends gathered on our front lawn to serenade us with Christmas carols.
The group represented so many of the members of our beloved community -- family, friends from Bledsoe Elementary, neighbors, Jim and Betty's friends (who have known Steve since he was a teen and have some great stories to share). Some of them had already devoted hours for our family that weekend -- at the pre-race dinner and the race itself.
We sat on the front walkway and enjoyed the sweet gift of their time and talents. Our spirits were already soaring from the weekend. The carols just pushed us even higher.
Deck the Halls
Angels We Have Heard on High
Away in a Manger
The First Noel
Frosty the Snowman
Rudolph the Red-Nosed Reindeer
Santa Claus is Coming to Town
Joy to the World
Oh Holy Night
We Wish You a Merry Christmas
As soon as the last note ended, Cooper bolted from his spot next to us to say hello to his teacher, Aimee Sanchez (pictured above). He was over-the-top excited that she visited his house.
We are blessed to be a part of the Bledsoe family and incredibly thankful for the teachers and staff members who continue to take special care of our family. We are touched that so many families devoted time on a Sunday to wish us a merry Christmas. We are in awe of folks like Liz, Kris and Holly, who take great care of their own families and still make time to take care of us.
We're just a week from Christmas, and some of you may be stressed. Maybe you think you have more gifts to buy. Perhaps instead of spending money, you could give the loved ones on your list your time. You could sing for them, or cook for them, or set aside an afternoon to visit.
Late Sunday night, Steve declared himself "the luckiest man on earth."
He didn't receive any material gift that prompted that bold statement. He received an outpouring of love that overwhelmed him in the best possible way.
Monday, December 15, 2008
Melanie, Allison and I ran together for the first six miles. Melanie was the first leg of one of the relay teams, which switched at mile 6. About that time we spied most of the Smith family (Layne and three beautiful children), taking photos and giving high fives.
Allison and I kept running. As we ran along one side of Matilda, we saw Sally, then Stuart, then Jim, run back the other side. They were all ahead of us, and they all looked strong.
Just after we crossed Central Expressway for the second time and we started running south, the wind and accompanying dirt hit us hard. We trudged along.
The Katy Trail offered more surprises. The Brown family (Kris, James and their three gorgeous girls) plus the Domens again were there to boost our spirits. As soon as they saw us coming, they started hollering, and they didn't stop until we were out of earshot.
With about a mile to go, I was really dragging. I knew we would finish, but my legs and feet were unhappy.
Then we saw Will, not too far from the end of the Katy Trail. He told us that we were almost there, that the rest of the run was downhill, and that there was a big crowd of yellow waiting.
What an awesome sight! Liz, Holly and Melane had scoped out a great watching post and planted a camp chair for Steve. He was surrounded by Cooper and Katie (chaperoned by Grandma and Papa), a great crowd of more family, friends and runners who'd already finished. Over the fence I handed sweet Steve my finisher's medal.
Just after Allison and I finished
After lots of congratulatory hugs and kisses, we headed to the other side of the American Airlines Center to watch the full marathon runners cross.Mark crossed with great speed and a huge smile. The See Spot Run relay team gathered to cross the finish line together. Then the See Spot Run 2 team finished strong.
Steve with See Spot Run: Randy, Andy (with son Jared), Paul, Chris and Melanie
Lisa (of See Spot Run 2) and Steve
Steve was exhausted, but he was drawing strength from "his" runners. He positively glowed, reflecting the love that was surrounding him.
And the day got even better. Check back soon for details on our surprise carolers!
For more photos, taken by Melane, Steve, Layne and me, click here.
Tyra and Allison
Brooke, Katie and Molli
Jim, Betty, Uncle Jim, Cooper and Katie
Cooper and Will
Cooper, Katie and Sally
For results, click on each name:
Tyra Damm (Allison and I actually finished four minutes faster than expected!)
See Spot Run relay team (Melanie Domen, Randy Lasley, Paul Duddleston, Andy Lewis, Chris Werner)
See Spot Run 2 relay team (Lisa Cutright, Kelly Huffman, James Demasi, Jackie Trey Harrison, Jason Lee)
Thank you to ...
* All the See Spot Run runners and their families and friends who supported them during training
* Liz, captain of the team, organizer extraordinaire and supreme motivator
* Jim and Betty
* Jim and Betty's awesome gang of friends
* Elaine Dunn
* Holly Bassen
* Kris Brown
* Richie Whitt
* Everyone who bought a shirt in support of Steve (Melissa, Norm and Roy: I'll mail yours this week!)
* Folks who sent good luck notes
* Everyone who prayed for us
* And to Steve, our inspiration. Out Damm Spot!
Sunday, December 14, 2008
Saturday, December 13, 2008
Updated with Mark!
Friday, December 12, 2008
Thursday, December 11, 2008
Many of you have been a part of our adventure ever since. Others have hopped aboard along the way. Every day, when I say prayers of thanks, I include you -- the folks who have prayed with us and for us, who have offered gifts, who have cared for us and our children.
Instead of retelling the pain of the last year, I asked Steve to share some of his favorite things. I first asked for a list of 10. Not enough, he said. I asked for 20. Still, not enough. Whatever it takes, I said!
His list isn't inclusive, and it's in no particular order:
Some of Steve's favorite things from the past year
Cooper playing soccer
Taking Cooper to see Wicked in Chicago
Love from friends old and new, neighbors, co-workers and strangers
Every new day
Bathing my kids
Washing the dishes
Our Christmas tree
Amazing doctors, nurses and staff
Baskin Robbins’ Peanut Butter 'n Chocolate Ice Cream
Run for Steve
Cracking myself up
Too many more blessings to possibly list here
Wednesday, December 10, 2008
His chest X-ray came back clear, though. Woo hoo!
So instead of checking into a hospital room tonight, we are thrilled to be in our cozy home with our sweet babies. (And we came home to a delicious dinner, created by one of my high school friends rediscovered on Facebook. Thanks, Angela!)
The doctors think Steve has reactive airway disease -- perhaps a virus that's caught in his chest. Tonight he'll start breathing treatments, which require a nebulizer, to more quickly relieve his symptoms.
The Frisco medical supply store that carries nebulizers was closing as we were in traffic on the Tollway, so we thought he would have to wait until the morning. But then the Spears family came to the rescue! They're letting us borrow theirs for the night.
He'll also begin using an additional steroid.
Dr. M was, of course, relieved that Steve hasn't aspirated and that he shows no signs of pneumonia. And she was delighted to see how well Steve is walking and using his left arm. She wrapped us both in big hugs.
She says she doesn't like to overstate anything, but that she feels confident that the combination of Avastin and CPT-11 is killing cancer cells. Another miracle for Steve!
He's been taking an antibiotic for about a week, plus he's been on an anti-pneumonia drug since January. Still, we want to be sure he's completely OK.
We're headed to UT-SW for a chest X-ray and appointment with Dr. M.
With just two phone calls, I was able to get afternoon care for both Cooper and Katie lined up. Thanks, Betty and Cathy, for always making our lives easier!
Monday, December 8, 2008
His left arm and hand are almost as responsive as his right arm and hand.
He's tired but closer to his "normal" exhaustion level.
His walk is much steadier. It's actually less stable today than yesterday, but it's still far better than Thursday.
His voice is weak, probably weaker than Thursday, but he's blaming part of that on his parade exuberance.
His cough, which was wheezy and slightly crackly this weekend, is better. After talking with Dr. M on the phone yesterday, he started using a rescue inhaler, which has helped.
Dr. M cautioned us that as the tumor cells die, they expand and release toxins. So, some of his symptoms could worsen again before they settle again to a manageable level.
We have so much to look forward to during the next few weeks -- Christmas parties, the marathon, special celebrations. And now we look forward to the next round of Avastin and CPT-11 on Dec. 18. Out Damm Spot!
Sunday, December 7, 2008
One week from today, the See Spot Run Team will be hitting the streets of Dallas in honor of our dear friend Steve Damm!
For months the runners have been diligently training for their opportunity to support Steve. Now, it's time for the support crew to prepare.
We need to have as many supporters as possible lining the course, cheering on our team! As it stands now, we have about 16 people running the half, one running the whole, and two relay teams running the whole.
To make this as easy as possible, we'd like for supporters to spread out along the course. We suggest picking an aid station from the map at the link attached and email me with your preferred location so we can let the runners know to keep an eye out for you. When you look at the map, the aid stations are indicated by red dots. Those are the locations we'd like you to pick from. However, your support is much more important than your location so if you have a favorite spot or a place that's works better for you, by all means, show your support however and wherever you can.
The map is located at the following address: http://runtherock.com/race_info/pdfs/TheRockMap2008combined_CLIF.pdf
We don't want everyone bunched up at the beginning of the race so if you can find a station or location towards the end of the course, I'm sure the runners would appreciate it. Your encouragement is VERY important during the final miles!
All the runners vary in speed. Some run eight minute miles, some 12. Please keep that in mind as you choose your spot because that will give you some idea of when you should arrive and how long you might want to stay. You don't just have to cheer for our team, I know EVERYONE out there would appreciate a little support.
Anyone and everyone reading this who would like to support the team is encouraged to reply.
The team colors are yellow and blue with a grey ribbon representing brain cancer awareness. If you'd like to wear yellow, that would help the runners know that you're there for Steve. If you'd like to make a poster then maybe a yellow one with the team name See Spot Run would be awesome!
What supporters need to do:
1.Download or view the map at the link above.
2. Choose a location from the course map.
3. Email Liz at firstname.lastname@example.org and let her know about where you'll be standing.
Please check back often for updates.
For those interested, Steve and Tyra will be staying at the W Hotel near the American Airlines Center the night before. If you would like to come to the start of the race, Steve and the runners will be in the lobby of the hotel at approximately 7:30 a.m. Look for the team in the yellow shirts.
We're only days away from the big event. Let's all show Steve and the team just how much we support them and their accomplishments!!!
During last year's parade, we had no idea how ill Steve would become. We were just days away from the MRI that showed the tumor. We loved the parade and talked about it all year long.
With great faith, we bought bleacher seat tickets again this year. (Anyone can go to the parade for free, but the bleacher tickets guarantee a spot with a good views.)
Two weeks ago, before we knew that there was new tumor growth, I started worrying about how Steve would walk from the parking lot to our seats outside City Hall. I contacted Jessica with the Children's PR department (Steve works for Children's) to ask if she could help us solve the problem.
She didn't hesitate to offer a golf cart.
After we learned Tuesday night that the Damm Spot is growing with live tumor cells, we weren't sure if Steve would make it to the parade. We were even more unsure Thursday, after he received Avastin and CPT-11. He was so exhausted -- we didn't know if he'd even be able to leave the house.
But, as you know, Steve is determined.
He rested all day Friday and skipped a neighborhood party so he could store energy for Saturday morning.
He woke up Saturday feeling strong enough to go, so we bundled him up, picked up his parents (Kris gave us extra tickets) and drove downtown.
As promised, Jessica (who had many important tasks that day) picked us up and dropped us off at our seats. The six of us sat in the first two rows and enjoyed the joyous parade.
Steve smiled more than any of us. He kept saying, "I'm so glad I'm here."
Cooper and Steve
KatieSteve has a soft spot for marching bands (he played trumpet in marching bands for W.T. White High School and the University of Michigan), and clapped especially loud for all the kids who performed just feet in front of us. He hollered a lot, too -- not an easy task with his raspy, faltering voice.
When the parade ended, most folks walked away from the plaza quickly. We waited for the crowds to thin and for a plan to get Steve back to the car. (Ack! I hadn't thought about how to get him back!)
Cooper and Grandma
Hero Layne Smith took charge. He asked around until he found a golf cart. The Children's volunteer wasn't sure how to drive it, so she scooted over, and Layne took the wheel, driving most of our party back to the car.
Steve, Layne, Katie and Papa
We are incredibly thankful for everyone who helped us get to and from the parade. We are even more thankful for miracle drugs that allowed Steve to feel better after less than two days of treatment.
Steve is tired again today, probably in part because of our morning outdoors. His voice is extremely weak. But his spirits were bolstered by watching a Christmas parade with his family, by continuing a tradition we started just a year ago.
Steve and Tyra
Friday, December 5, 2008
He has not had any adverse side effects, though. Isn't that wonderful?!
Even more encouraging: He's showing signs of improvement. He has been able to wiggle the fingers on his left hand for the first time in days. With some effort, he's able to lift his left arm higher than his shoulder.
We pray that the decreased symptoms are directly related to the Avastin and CPT-11 combination and that symptoms continue to improve.
Speaking of prayer ...
Our friend Jamie H. has proposed a challenge. Here are her words:
I'd like to repeat a small message I sent to Tyra a few weeks ago. A challenge, maybe. During our church services a while back our pastor asked everyone in the congregation to shout out their own names; after the count of three a very loud, undecipherable noise burst out. Then he asked that we all shout out Jesus at the count of three. And the sound was clear, crystal. This exercise was supposed to show how much more clearly we can be heard by God when we shout in unison. I would like to suggest that everyone say a prayer for our dear, dear friend Steve at noon each day for the next week. That gives everyone a chance to pray in unison, a collective shout for Steve and the entire Damm family ...
Thursday, December 4, 2008
Resting in the infusion room, waiting to be released
Steve has had no adverse side effects so far! He is exhausted, though. He napped for about an hour. He's now sitting up in the comfy green family room chair with closed eyes, listening to Cooper read a G.I. Joe comic book aloud to Grandma.
He'll keep a low profile tomorrow, watching for signs of nausea. He also needs to be extra cautious with his balance. Dr. M says that fatigue, stress, medications and now the new treatment PLUS the growing tumor are affecting his balance and left-side sluggishness. He needs to get caught up on sleep and let his body rest so he can be safer when moving.
This week wouldn't have been possible without help from so many selfless friends and family members. No one has hesitated to help with Cooper and Katie or to help around the house or to bring food. Thank you for making our lives easier.
His nurse was able to draw three vials of blood from his new port -- so much easier than the needle sticks he usually endures. Those labs showed that his counts are enough in range to start the new treatment plan.
We reviewed possible side effects and remedies with Dr. M and again with a pharmacist. Then they started him on a saline solution, Decadron and anti-nausea meds.
The Avastin drip began sometime after 10 a.m. That will be followed by the CPT-11 (chemotherapy) drip.
The room is comfortable. We have a television with VCR and DVD player (he's watching Major League right now) and three visitors' chairs. We've already hosted our first guest! Pastor Andy spent more than an hour with us and closed our visit with a beautiful prayer.
A few steps away is a refreshment room, stocked with juices, Ensure and Boost. (Steve prefers Boost -- he thinks it's more youthful than Ensure.)
Steve is layered with warm blankets. He's wearing a gray stocking cap and maize and blue gloves (Go Blue!). He looks "cozy rosy," as Dr. M said when she walked in.
Dr. M expects that Steve will be severely fatigued tomorrow and perhaps throughout the weekend. By Monday he should be feeling much better, she says.
Wednesday, December 3, 2008
Steve has rested this afternoon and is starting to hobble around a little now. He is so much more unstable today than just two days ago. Part of that may be because of poor sleep the past two nights, despite sleeping pills. The poor sleep may be in part because of the increased steroid dose. He's up to 6 mg of Decadron a day -- a huge jump from the 2 mg he'd been taking for months.
We are eager to get this next treatment started and to see some results. We expect to spend most of Thursday at the UT-SW cancer center: labs, meet with Dr. M and then the introduction of toxins begins!
I'm happy to report that Steve's sense of humor is still intact. Of course, he's emotional about this latest turn. But he never fails to amaze me with his wit and appreciation for the quirky.
I want to share two things that always make us laugh.
First: A riddle that Cooper "invented."
Why are thermometers so good in college?
Because they have so many degrees.
Second: A video of Katie dancing a couple of weeks ago.
St. Paul is the site of great moments in Damm family history. Cooper was born here in July 2001, and Katie made her debut here in June 2005. Will, our dear friend who introduced us, was born here in May 1969.
We're in a room on the cardiac floor. Nurses have reviewed his medical history and have hooked him up with a Heparin lock for the IV he'll have going during the procedure.
He'll be in the procedure room for about an hour, where they'll place the port in his chest. (We keep saying "installed," but that makes him sound more like an automobile than a person.) He'll return to his room, and the staff will monitor his vital signs for an hour or two. Then we should be able to go home.
Tuesday, December 2, 2008
She said that everyone was shocked. No one expected this.
She said that this is bad news. (Deep breath.)
Now, let's move on to how we're going to keep fighting the Damm Spot.
Steve will report to the invasive cardiac center at St. Paul on Wednesday morning. The folks there will place a port in his chest. The port will allow convenient access for the drugs he'll receive every two weeks to chip away at the tumor.
(When the St. Paul scheduling people call, they remind Steve to make sure someone drives him home after the procedure. That always makes us giggle -- he hasn't driven for almost a year.)
On Thursday morning, we'll report to the UT-SW cancer center. Steve will have blood drawn, and then we'll meet with Dr. M and her team to go over the new chemotherapy regimen.
Then we'll be ushered to a private infusion room. He'll settle into a recliner and begin receiving Avastin and CPT-11 through the new port.
Avastin is the drug that affects blood vessels. CPT-11 is a form of chemotherapy. The combination is about 70 percent effective in fighting brain tumors. There are side effects and risks with both, but the risks are worth the potential benefit.
Steve will return every other week for the infusion.
We never expected to be at this point this soon. We were praying for a few more years before we needed to start using this second line of treatment.
Now that we're here, we are committed to devoting our strength and faith toward fighting the new growth. We are committed to celebrating how far we've come.
For some perspective: Sharon was at the house tonight. She took Cooper to his Cub Scout meeting and then visited with Steve and washed dishes, including our Spode Christmas dishes. She reminded us that about a year ago she was at the house, visiting with Steve and washing dishes, including our Spode Christmas dishes.
Steve is almost a one-year survivor of a Grade IV glioblastoma in the pons of his brain stem. To borrow a phrase from the late Rev. Kathleen Baskin-Ball, "Glory be!"
Please join us in giving thanks that we have come this far. And join us in praying that the next line of treatment will obliterate the Damm Spot.
I'll post when we know more.
Beloved minister Kathleen Baskin-Ball passed away this morning at her home. She served three years at our church, long before we were there. She left a huge imprint on our congregation's spirit. She most recently led Suncreek United Methodist Church in Allen.
To hear Kathleen speak was to be wrapped in warmth. There is no doubt that she was chosen by God to inspire, share and preach.
I interviewed her for a Dallas Morning News article in December 2006, days before her cancer diagnosis. She shared her favorite biblical verses. Here is the Kathleen excerpt that ran:
"Who will separate us from the love of Christ? Will hardship, or distress, or persecution, or famine, or nakedness, or peril, or sword? No, in all these things we are more than conquerors through him who loved us."
The Rev. Kathleen Baskin-Ball said this passage, which she returns to often, is appropriate for funerals, but also for folks struggling with deteriorating relationships, troubles with children and other conflicts. "It's a passage that can be read in the midst of life, wondering if the love is ever going to rise again. We sort of wonder sometimes, with war, starvation, hunger, Is God at work? It says to me and the faithful, there is nothing more powerful than the love. Nothing can separate us from it."
The Rev. Kathleen Baskin-Ball
Suncreek United Methodist Church, Allen
Monday, December 1, 2008
Dr. M expects to receive results late today or early Tuesday. She says she'll call us when she gets the reading. The scan will tell us if the enlarged mass is live tumor activity.
We spoke with Dr. M yesterday to let her know about Steve's worsening symptoms. She spent a while on the phone explaining what the doctors agree on so far.
Everyone believes that the growing Spot is the result of radiation and chemotherapy. The technical term is necrosis. Necrosis is when healthy tissue and cells die. So, all the consulting doctors think that the treatment Steve has received so far, which was absolutely necessary, is also what has caused healthy cells to die.
It's impossible to know from an MRI. (A biopsy is the best way to be sure, but there's no way that's going to happen again.) But all the doctors and UT-SW and M.D. Anderson feel certain based on the timing of his returned symptoms and the location of the dead healthy tissue.
The PET scan will confirm their theory.
It will be fabulous news if the tumor itself isn't growing. Still, there is the issue of the healthy tissue dying. The brain stem is small but controls all the nerve and sensory systems. A little change in the brain stem can cause big changes in the body. Steve can't afford many more little changes.
So, the next issue is how to stop necrosis.
Dr. C at M.D. Anderson recommends the use of Avastin. Avastin was first used to extend the life of colon cancer patients. It is now used for a number of cancers. (Use for brain tumors is considered "off label." Dr. M's office has already started working on pre-authorization from our insurance company. So far, our United HealthCare plan has been awesome. They have covered more than we expected.)
Avastin works by affecting blood vessels. The hope is that Avastin will stop capillary leaks at the site and therefore stop the deadness from spreading. (Another hope is that I'm explaining this correctly!)
Steve will begin taking Avastin tomorrow or Wednesday, we think.
He is scheduled to have the port placed in his chest Wednesday morning. If it's possible to begin using the port the same day as placement, they'll start using it then to administer Avastin.
If medical providers think it's not a good idea to start using the port right away, they are going to try to get him scheduled for an IV appointment Tuesday, and he'd start Avastin then. Avastin is given every two weeks. We need it to start working right away!
Steve will also continue taking Accutane. (As a reminder, the high dose of Accutane is used to trick the cancer stem cells into behaving like regular ol' cancer cells.)
He will not be on an official chemotherapy for now. The doctors agree that the Temodar has outlived its effectiveness.
If the tumor cells do start growing again, he'll most likely start a second chemotherapy (CPT-11).
1. We're waiting for the PET results to confirm that the enlarged mass is necrosis.
2. We're waiting to find out if Steve will begin Avastin on Tuesday or Wednesday.
3. We're praying that the Avastin will do its job quickly and relieve Steve of his worsening symptoms.
I've been keeping track of thank-yous on the upper right side of the page. Yesterday was an especially eventful day here.
Bill K. spent about two hours in the front yard, trimming bushes (Cooper assisted with raking). Jim and Betty came over so I could grocery shop. While they were here, they played with Katie, helped Cooper with a school project and picked up the kids' rooms. Jeannie D. came over at night so I could run eight miles with Allison (the half marathon is two weeks away). And an unnamed elf left two small Christmas trees on the front steps -- one for each child to put in their rooms.
We are so blessed. "Thank you" just doesn't seem sufficient some days.