Thursday, February 26, 2009

Day after new chemo and a dog story

Steve seems to be tolerating the Carboplatin/Avastin combination well so far. He hasn't become nauseous, which is the first hurdle.

We'll return to UT-SW next Wednesday for labs. Carboplatin can really destroy white blood cells, and Steve already has a history of low white counts. Dr. M's office will be following his numbers closely.

Steve is feeling well enough today to sit up and work from home. Holly and Liz were with him all morning, while I was at a training session in Dallas. (I have a new freelance writing job.)
Starting last night, we're thickening his liquids again to avoid aspiration. Dr. M's team, Steve and I agreed months ago that he didn't need thick liquids -- he seemed to be drinking well. In the past few days, though, he is coughing frequently after drinking. We can't risk a little bit of fluid going the wrong direction and filling his lungs.

He's getting around the house with a new walker, a gift from Mary and Skip. The walker he received from the hospital is functional. The new walker is like a sports car -- shiny red, with hand brakes, a basket, cup holder and cushy seat in case he needs to take a little break.

While Mary was here yesterday afternoon for the walker delivery, Kelly J. dropped Cooper off from an impromptu afternoon at the park with Tate and Kyle. I was standing in our entry way, talking with Kelly and holding the storm door open just a little.

I kept glancing back at Margie, who was so patient and docile, as if she didn't even notice the door was open a few inches. I reasoned that if she bolted for the door, I'd just block her with my legs.

Either my reflexes are slow or Margie is even faster than I thought. She changed from docile to wild with no warning and was out the door!

I chased after her in my bare feet. Kelly jumped in her SUV and followed us. Margie sprinted down the street. When she runs, it looks like she has wheels instead of paws. She is fast!

Toward the end of the street, Kyle jumped out of the car and almost captured her, but Margie is agile. She avoided his grasp and kept going. Toward the busy street!

By this time Cooper had reported to Steve and Mary that Margie was loose. (He'd tried to join us in the effort to capture Margie but realized that a foot chase was futile.) Mary jumped in her SUV and joined the chase.

Margie charged across the busy street and almost ran into a big open field. I would have followed her, of course, but I dreaded the thought of running without shoes in a scratchy hayfield.

Instead, she turned left, toward the elementary school (and thankfully away from the heaviest traffic).

Mary and Kelly were deftly driving, trying to corner her without running her over.

As soon Margie reached the campus, she started panting and looked tired from her third-of-a-mile sprint. Mary and Kelly stopped their cars at angles -- kind of like police officers in an action movie scene.

Mary opened her door, called Margie by name, and our speedy Scottie padded over and hopped in. As if nothing was out of the ordinary.

We all drove home. Cooper was sitting on our curb, and I gave him a thumbs-up sign from Mary's front seat so he'd know that Margie was safe.

He told me that he'd been praying over and over that she wouldn't get hurt and wouldn't get lost. I told him I had done the same thing.

Still Margie

Lone Star Ranch blood drive

What: Carter BloodCare will set up in Lone Star Ranch (our Frisco neighborhood) to accept blood donations. Your contribution will be credited toward Steve's account!

When: 11 a.m. to 5 p.m. Sunday, March 8

Where: Lone Star Ranch amenity center, 5150 Beacon Hill (just north of Lebanon)

How: To reserve your donation time, follow these instructions.
  • Click here to go to the reservation page.
  • Account Name: kpd2009
  • Password: spring2009
  • When spreadsheet opens, click on the yellow "Edit" tab above the spreadsheet heading.
  • Add name, phone number and e-mail address to desired time.
  • When finished, click on the blue "Save and Exit" tab.
Contact: or 972-625-3758

Wednesday, February 25, 2009

Home from chemo

Today's treatment was smooth, and we are now home. We hope to nap for an hour, before bubbly Katie is home from preschool.

Good counts!

We've just cleared a huge hurdle. Steve's blood counts are enough in range for today's treatment!

The nurse just started his pre-medications. Then she'll hang the Carboplatin, which takes 30 minutes, then hang the Avastin, also for 30 minutes.

Steve has been napping for the past hour. I hope he's able to continue for at least another hour. He has hours and hours of sleep to catch up on.

Thank you for your many prayers and good wishes.


  • Steve no longer has kidney stone-related pain. He passed the stone at about 7 a.m.
  • We're at the cancer center. We're waiting for lab numbers to come back so we can get started on Avastin and Carboplatin.
  • Awesome neighbor and friend Denna is organizing a blood drive at our community center. Save the date: Sunday, March 8. Details to come soon!
  • Cooper suggested this morning that a special soap be used inside Daddy's brain. Because soap gets rid of germs.
  • Steve says he's giving up at least two things for Lent: cancer and kidney stones.

Tuesday, February 24, 2009

Kidney stones, Part II

Steve seems to be experiencing another kidney stone attack.

The pain started about an hour ago. He says it feels just like it did three weeks ago, when he had the first one. (The scan three weeks ago showed a 2 mm stone on its way out. It also showed a 4 mm stone hanging out in the kidney. The ER doctor said it could very well stay there for a decade.)

I don't want to drag him to the ER and spend six hours among people with flu and strep on the eve of his next chemotherapy treatment.

So I called Dr. M, who responded right away. She's called in the most potent pain killer she can, and Liz is on her way to the pharmacy now to pick it up. (It won't be as strong as the IV drugs he received at the hospital.)

Our hope is that he gets through the night with just the oral pain meds. If the pain becomes too unbearable, we'll head to the ER.


11:50 p.m. update: The pain meds have taken the edge off. Steve says that his pain level is at a 3, on a 1-10 scale. He is close to falling asleep and can take more medicine at 3 a.m. if he needs it.


5 a.m. update: Steve woke up around 4 a.m. with more intense pain and took another pain pill. He was asleep again by 4:45. We leave the house at 7:10 to take Cooper to the Bassens and Katie to Zita's before reporting to UT-SW by 9 a.m.

Monday, February 23, 2009

Symptom update

Steve's respiratory symptoms are much improved over last week. He still has an occasional coughing fit, but with much less frequency.

His left-side symptoms have not improved. We reluctantly take this to mean that the larger mass is due to new tumor cells. Steve has e-mailed Dr. M's team to ask about stepping back down off the high dose of Decadron.

Steve fell early Saturday morning and, thank God, was not injured in any way. He now uses the walker at all times to get around the house. I still have a couple of areas to clear for the width of the walker, but for the most part he can access anything on the first floor. (There's just one room upstairs, and there's nothing up there that he needs that we can't get for him.)

Please join us in praying that Steve's counts stay in an acceptable range for the new chemotherapy treatment on Wednesday and that Avastin and Carboplatin beat up on the new growth and the old cells.

Saturday, February 21, 2009

Just in time

We all have had a rough week. Cooper was no exception. He listens a lot and worries a lot. Just like all of us, he desperately wants Steve to feel better.

Like Steve, he really doesn't like hospital visits. He tends to take a few weeks to recover from Steve's overnight hospital stays.

A couple of events came just in time at the end of the week.

Cooper received his Wolf Badge at the Blue and Gold Banquet last night.

We had hoped to take Steve with us, but Dr. M was insistent that he not be around a whole bunch of people who may be carrying flu or strep viruses. She stressed the urgency of beginning the next chemotherapy cocktail on Wednesday, and that can't happen if he gets ill.

Cooper still had a big family cheering team. Grandma, Papa, Uncle Jim, Katie and I attended the dinner and cheered for Cooper and his buddies as they received badges that represent many months of hard work.

Betty, Cooper & Jim

Jim & Katie

Cooper & Tyra

Not long after we got home, our dear friend Matthew arrived from Florida. (Cooper's middle name is Matthew, named for Uncle Matthew.)

They've been playing, reading and having a great time catching up.

Cooper and I took a break this morning to go to his second soccer game of the season. Cooper scored two goals and was named MVP. Whenever he scores, we buy him ice cream -- today we stopped at the Double Dip for an extra-special treat to celebrate.

Cooper & Coach Phil

Tonight he's at a slumber birthday party, playing with old and new friends.

I know that these events don't take away some of the sadness he feels, but I am thankful for moments that give him boosts of confidence.

Friday, February 20, 2009


Steve is home and sleeping. He has been forbidden by Dr. M to attend Cooper's Cub Scout banquet tonight. Many tears have been shed, but we know there is a greater good, worth the short-term anguish.

Leaving today!

Steve's stay is being changed from an admission to observation, which means we're leaving sometime this afternoon.

The general agreement is that he has some sort of respiratory virus -- maybe bronchitis -- along with asthma. He has done well with the oxygen and has had just one breathing treatment while here.

The great thing about this stay is that a wonderful physical therapist and later an occupational therapist came by with modifications and suggestions to help Steve get around better.

(Ironically, we had a home health PT visit scheduled for Wednesday that had to be rescheduled because of Steve's transfusion. We rescheduled it for this morning, which of course, had to be canceled.)

Steve will be leaving today with a walker and some tools to make little tasks easier (putting on socks, bathing, picking up his slow leg).

We'll also leave with small tank of oxygen and should have one delivered to the house later today.

He won't need oxygen all the time, but it does seem to have a good effect on his coughing and breathing. The rounding oncologist and I talked about how it would be good to have, and she agreed to prescribe it. We are so fortunate to have insurance that covers home oxygen regardless of pulse-oxygen levels -- as long as a doctor prescribes it, our policy will cover it.


No hospital stay would be complete without a great behind-the-scenes support staff. This includes:
  • Julie, who met us at the ER, kept us company and left us treats
  • Will, who arrived just after Julie left, bringing dinner and more laughter than we've had in weeks (entertainment included games of Hangman and dancing)
  • Betty and Uncle Jim, who brought good cheer into the ER, and along with Jim have taken excellent care of Cooper, Katie & Margie
  • Mary, who arrived just after Will left, and helped us settle into the room and left us treats
  • Layne, who brought me a coffee and oatmeal on his way to work
  • Pastor Andy, who visited this morning
  • Melane, who left work for a few hours to visit
  • Holly, who brought cupcakes and hugs from Frisco friends
  • Zita, who brought lunch and muffins
  • Jim, who is here now, waiting for Steve's release
  • Bledsoe staff, who is keeping an eye on Cooper today
  • The many, many friends who offered help, prayers and calls

St. Paul morning update

Steve slept little last night. He was assessed by the RN and then the doctor on call. Then he had to wait for his nighttime meds, which had to be ordered by the doctor.

Around 3 a.m. he required a breathing treatment to help with his cough.

His cough is actually better today than yesterday. He's been on oxygen since the ambulance ride. Maybe that's helped?

Dr. M and I have corresponded via e-mail. We were confused last night/early morning by the on-call doctor's assessment that this week's MRI revealed a smaller tumor. That's what the final report stated.

Dr. M clarified. The cystic part of the tumor -- the middle part -- is a little smaller now as compared with January. The radiologist who wrote the final report was focused on the cystic part.

What the final report didn't reflect was the slightly larger margins. Dr. M calls on the same radiologist each time to quickly read the MRI reports -- that's how we get results within hours of the scan. That radiologist knows Steve's clinical history and watches for very slight changes.

So, Dr. M and that radiologist agree that the margins are slightly larger, based on this week's reading and Steve's symptoms.

Again, little changes in the brain stem equal big changes in the body.

Two hematology/oncology residents were here earlier this morning. They went through the normal line of questions and neuro exams.

The young man (all the residents are younger than us, which seems so strange, because aren't we young?!) had an interesting bedside manner, which clearly needs to be refined.

His colleague asked Steve, "If you were to stop breathing, would you want a tube pushed down your throat?"

Steve was taken aback by the question and teared up a little. The female resident held his hand and reassured him that she always asks that question.

Then the male resident said, "You do know you have a bad kind of tumor, right?"

Ha! Really?!

I replied that, yeah, we're aware of the severity of the tumor and were pleased to have done so well for the past 14 months.

More details soon!

In a room

Steve was moved to a room on the hematology/oncology floor about 11 p.m. He's been examined by the nurse and doctor on call, and we'll see more doctors tomorrow.

There are no answers yet, and actually we have more questions. (The doctor gave us information on this week's MRI that conflicts with the information we received Tuesday.)

As always, Steve's journey continues!

Thursday, February 19, 2009

St. Paul ER

Steve's symptoms didn't improve today. Dr. M was concerned enough to ask us to report to the St. Paul ER.

She wants a set of fresh eyes, to see if there's an infection or something else that needs to be addressed.

Because the situation wasn't urgent, we had time to get the kids settled. Jim and Betty picked them up (and Margie) and took them to their house.

Then we packed a few things and called for an ambulance.

Steve arrived a little before 6 p.m. I followed in the car and was here just a few minutes later. Julie was already at the ER, waiting for Steve. She stayed with us for more than an hour. (We're in the old ER section at St. Paul. Julie commented that it looks like a set from St. Elsewhere.)

We're waiting on lab tests and chest X-ray results. And sometime tonight he should be admitted, under the hematology/oncology team.

Steve is in good spirits, making nurses and the doctor laugh. Still, he really doesn't enjoy being here.

I'll update as we know more.

Please pray for Steve and the health-care team. And please include Cooper and Katie in your prayers tonight. Cooper, especially, had a rough time this afternoon when he learned that Daddy was returning to the hospital.

In sickness and in health

Steve is about the same this morning as he was last night. A coughing fit woke him at 2 a.m., and he was up with a breathing treatment and the jittery aftereffects until 4:30 a.m.

I spoke with Dr. M's nurse, to update her on symptoms. I'll do the same this afternoon. They want to be sure there are no new symptoms and no deterioration.


I want to share what I wrote for my twice-weekly Briefing column today. The link is here.

In sickness and in health? These vows have meaning

Last week Katie proposed to Steve.

This wasn't the first time our 3-year-old has expressed an interest in marrying her father. We always tell her that family members can't get married and that Daddy is already married and that when she's old enough to get married, she'll probably want to marry someone else.

Right now her top non-Daddy choice is Conor.

Last week, when asked why Conor would make a good husband, she said, "He'll put his dirty dishes in the sink, and he won't eat like a bear."

After considering her answer for a few days, she edited her response: "He won't eat like a wolverine."

Katie clearly has a low opinion of wolverines.

She has a high opinion of marriage, though, especially ours.

She dictated the message on our handmade Valentine's Day card, created at preschool. When her teacher asked Katie what she loved about her parents, she said:

"They are very sweet. Mom and Dad love each other. They think they are nice and beautiful. I love you!"

Steve and I are touched that she notices how much we love each other. We hope that we're modeling the kind of relationships that she and her future husband – and Cooper and his future wife – will have one day.

We certainly aren't perfect. We do try our best to support each other, resolve conflict and honor our vows.

For better or for worse? The better far outweighs the worse. I could write books about the better, with titles such as The Great Adventures of Steve and Tyra and Dancing in the Kitchen and Grocery Store Aisles. But there's been plenty of worse.

Miscommunication, broken major appliances, workplace stress that comes home too often.

For richer, for poorer? We've never gone hungry. We've always had more than adequate shelter. We have plenty of extras. Still, we marvel how we survived our first couple of married years, when we both earned very little money and still carried some wedding debt.

In sickness and in health? For most of our time together, we've enjoyed good health. The past year feels like 15 years of sickness all crammed into one, though. Steve has been battling brain cancer.

Just when I thought I knew everything about our relationship and how much I loved Steve, the "sickness" part changed everything.

Until now, I never knew how much the suffering and struggling of another person could cause such pain for another. I'm no stranger to empathy, but I've never experienced such heartache.

When I watch Steve struggle to walk from the sofa to the kitchen or listen to his strained voice while he reads bedtime stories to our children, I hurt for him. When he is in pain, I feel like it's hitting me, too. (If only I could steal his pain altogether.)

A friend e-mailed this week to check on Steve and me. When I shared with her how difficult it is watch such suffering without being able to help, she responded, "You are one unit. It's the definition of love."

When we exchanged vows in July 1994, I never really considered the definition of love. I just knew, without a doubt, that Steve and I were truly meant for each other. That our love would propel us through whatever challenges were ahead. That our love would continue to create joy.

As we held hands at the altar, we never imagined that we'd face a brutal cancer diagnosis.

There's no way that I could have anticipated how our shared fight against a brain tumor would deepen our love and strengthen our relationship.

There's no way I would change a single moment.

Wednesday, February 18, 2009

Fresh blood

Steve successfully received two units of O positive blood this afternoon.

His cheeks developed a pinkish hue by mid-afternoon. His hands are still grayish, but we're hoping that resolves as more time passes.

His energy level hasn't improved. His stability hasn't improved. His ability to move his left arm and hand has slightly improved.

We're not feeling despair, though. I spoke with Dr. M tonight. She emphasized that Steve's body is fighting a bunch of battles right now. His low white count, low hemoglobin count, laryngitis, a probable respiratory virus, some digestive troubles, a larger mass in the brain stem -- they all take a big toll.

So, the big bounce we had hoped for from the doubled Decadron dose and the two units of blood may not happen as quickly as we'd like.

Dr. M ordered Steve to stay in bed all day Thursday. If he feels up to it, he'll work from bed. Aren't laptops and wireless networks amazing?

I'm also amazed by the power of a stranger. Someone out there took the time to donate blood, and it's going to help Steve get stronger.

And I'm amazed by the human body. Something as essential as blood can be taken out of one body and then used in another. As unique as each human is, we all rely on basic elements. Blood, one of the most important elements, can be shared from one healthy body to another, less healthy body.

Thank you for continued prayer!

Want to give blood?

Wow! So very many of you have offered to give Steve blood. We are truly in awe of you all.

We have established a sponsor number through Carter BloodCare. If you want to give blood and have your units credited toward Steve's account, you use this number:

(that's a zero after the word "spon")

If you are in North Texas, you can donate your blood at any one of 27 Carter centers. Click here for a list of locations. It doesn't matter what type you have. (Steve's is O positive.) Your donation will help someone in need AND add credits to Steve's account. What a fabulous gift!

You can also use Steve's sponsor number at any company-sponsored or community group-sponsored Carter blood drive.

When one person gives a unit of blood under Steve's number, his account receives a credit, which offsets any blood-product cost we might incur. (I don't know yet how our insurance will handle the transfusions.)

Thanks so much!


We are in the treatment center now -- the same place Steve receives chemotherapy. The staff is running behind. Labs haven't been drawn yet, so we're probably still half an hour from receiving fresh blood. Updates to come.


12:36 p.m.: A fresh bag of O positive is dripping into Steve's PICC line. He is beyond ready for fresh blood!


2:35 p.m.: First bag is getting much smaller. Steve is napping. His cheeks have a pinkish hue!

Tuesday, February 17, 2009

Today's news: Detailed version

Larger mass
The Damm Spot is a little bigger. When you compare today's non-contrast image with January's non-contrast image, you can see that the mass is a little bigger all around.

What can't be determined from the MRI is why the mass is bigger. It's either because of inflammation or new tumor cells.

Either way, the CPT-11 (chemotherapy) is no longer doing its job. It is either causing too much swelling or it's no longer effective in killing cancer cells.

Steve has been taking 5 mg of Decadron, the steroid that addresses swelling in the brain. Beginning today, he's taking 10 mg.

If the mass is larger because of inflammation, a doubled dose of Decadron should take care of the swelling and should therefore take care of the related symptoms.

By tomorrow night we should have a good idea if the increased dose is working. If Steve has markedly better mobility and stability, then we can assume that the larger mass is because of inflammation.

If his symptoms don't improve, we can assume that new tumor cells are to blame. If that's the case, he'll drop back down to 5 or 6 mg of Decadron. There's no reason to keep him at the high dose if it's not helping.

The contrast images from today, compared with the contrast images from early January, show that Avastin is doing its job.

The images show that there is no bleeding in the brain. Avastin is helping to stop blood vessels from leaking.

New chemotherapy
Because CPT-11 is no longer effective, we need another drug.

Dr. M recommends using Carboplatin in conjunction with Avastin. Carboplatin attacks the cancer cells differently than CPT-11.

The dosage is different than CPT-11. Carboplatin is given every four weeks, instead of every two weeks.

So next Wednesday, Steve will receive Avastin and Carboplatin in the infusion center at UT-SW. Two weeks later, he'll receive just Avastin. Then on March 20, he'll have an MRI to check the progress.

In general, Carboplatin doesn't show response as quickly as CPT-11. So if we're relying on chemotherapy, instead of steroids, to improve Steve's symptoms, we may be waiting a few weeks.

There is a chance that this protocol will change before it begins. Dr. M will consult with M.D. Anderson in the next few days to make sure that everyone agrees that this cocktail is the best option for Steve.

Low counts
Steve's hemoglobin count is too low, as indicated on lab work today. The low count is contributing to his severe fatigue (and causing his skin to appear grayish white).

Wednesday we'll report to the UT-SW lab at 11 a.m. for another round of blood work. Then we'll go to the transfusion center, where Steve will receive two units of blood. That process will take a minimum of four hours.

His white count is also low. If it's still low tomorrow, he'll probably also receive Neupogen injections until the count is at an acceptable level.

Many of you have already asked if Steve needs blood donated. I don't think he needs any specifically for tomorrow. I will ask if your blood donations can be credited on Steve's behalf.

(We joked this afternoon that he's always been a giver, not a taker, when it comes to blood. He was a faithful blood donor before his cancer diagnosis.)

Yes, his old "friend" thrush is back. His mouth and throat are coated with signs of yeast, a side effect of the steroids. He started an anti-thrush medication today.

He also has a mild case of laryngitis. His voice is at a whisper today, partly out of self defense. If he talks too much or too loudly, his coughing fits return.

Clear chest X-ray
The chest X-ray revealed no signs of pneumonia

Other good news
Dr. M says today could have been much worse. There are no signs of bleeding. There are no new tumor areas.

We love to celebrate these moments! On the way home, we stopped at Sprinkles for cupcakes for us, the kids and Jim and Betty.

Swollen foot and hand
Steve's entire left side seems to be suffering from poor circulation, a result of his decreased mobility. We did have a home health physical therapy evaluation scheduled for Wednesday morning. That's been rescheduled for Friday morning.

We hope that the physical therapist will be able to advise modifications and activities to help cope with the left-side troubles.

Awesome parents and grandparents
Jim and Betty visited UT-SW this morning, and we were able to see them between tests and appointments. Then they arrived at Katie's preschool in time to see the President's Day parade and to take her home for a nap. Betty walked to Cooper's school to pick him up. Then they helped all afternoon and evening -- grocery shopping, cooking, kitchen cleaning, laundry folding, playing, reading. They are superheroes!

How we're doing
Steve is as tired as I've ever seen him. His spirits are definitely flagging. Who can blame him? He's in discomfort (on top of everything else, he slept poorly last night and had back spasms throughout the day), his body is lacking all the blood it needs, the Damm Spot is bigger for reasons unknown, he can barely walk or talk. (Plus he experienced an awful morning with the MRI technician. That story will have to wait until tomorrow.)

But still, he's the same sweet Steve with a biting sense of humor and quick smile for his family. I expect that he'll start feeling better after tomorrow's dose of blood and with the steroids that are going to work!

I am tired, too. There is so much pain involved in watching your one true love suffer and struggle.

Still, I am so blessed by your constant outpouring of love. I never lack for someone to talk to or cry to or laugh with. I'll have to hug dozens of people a day for the rest of my life to pay back all the hugs I've received!

Mostly, I am thankful for Steve. I want to share something I wrote about him almost three years ago, in response to an e-mail from a dear friend:

Steve makes me feel valued in just about every possible way. He is my biggest fan, offering praise when I don't think I deserve it. He keeps my bedside table stocked with chocolates, so I can have a treat whenever I want. I get embarrassed sometimes by the way he dotes on me in front of others -- he brags on my accomplishments and makes me sound like a wonder woman. He constantly gives me credit for where we are in our lives -- Cooper & Katie, his career, our home. ... I could write an entire essay on this topic. I really am lucky!

Today's news: Quick version

1. The mass in Steve's brain stem is larger.
2. We don't know if it's caused by inflammation or new tumor cells.
3. There is another chemotherapy that he can start using next week, in conjunction with Avastin.
4. His steroid dose has been doubled. If there is improvement in symptoms right away, that indicates the problem is inflammation.
5. Steve has a low hemoglobin count and requires a blood infusion.
6. He has a low white count and may require Neupogen injections.
7. We are home and will return to UT-SW for more labs and infusion (if the right blood is available) tomorrow morning.

I'll offer more details tonight. Please continue to pray for sweet Steve!

MRI about to begin

Steve has just gone back to his MRI room at the Rogers imaging department at UT-SW.

He had a rough night, struggling to get comfortable and then requiring a breathing treatment about 3 a.m.

His left side is extremely uncooperative. We used a wheelchair to get him from the car to the imaging center. We'll use it throughout the day.

Dr. M's nurse came by when we arrived. She gave us the orders for his chest X-ray, so when the MRI is done, we'll go to the third floor.

When we meet with Dr. M, she'll have the MRI and X-ray results.

We both feel all of your love and prayers. Thank you!

Cooper's prayer

Cooper prayed for Steve this morning:

Dear God and Jesus and all the good angels,
Please help Daddy feel better and
help him have a good day at the doctor
and don't let him get hurt.
And help the doctors.
In the name of God and Jesus and all the good angels, Amen.

I asked about "all the good angels," which was new in his out-loud prayer routine.

He told me he just thought about them. "You know, the good angels like George Washington."

Monday, February 16, 2009

Change in plans

Steve has developed some upper respiratory symptoms on top of his stability issues. He has started an antibiotic again and breathing treatments to help settle his persistent cough and wheezing.

Steve spoke with Dr. M last night. She's concerned about the respiratory issues and told him to stay home from work today (he doesn't need to be exposed to all the flu and strep germs still circulating). We asked Dr. M last night if she could move up the MRI and see Steve earlier.

Steve now has an appointment for an MRI at 10 a.m. Tuesday, followed by an appointment with Dr. M and a chest X-ray. We expect it will be a long day. Dr. M's office usually runs at least 30 minutes late -- probably because she spends such a long time with each patient. We'll learn the results of the MRI during her appointment.

We continue to pray that there is no tumor growth, that his increased symptoms are because of chemotherapy or a virus.

I'll update Tuesday when we know more. Thanks for checking on Steve!

Saturday, February 14, 2009


Katie, holding the card she made us at preschool: "I love you because ... They are very sweet. Mom and Dad love each other. They think they are nice and beautiful. I love you! Katie"

Cooper, walking home from school yesterday, just after his Valentine's Day party

Steve and Tyra tonight, with our traditional pose in which one of us holds the camera out as far as possible and shoots

Tyra and Steve, at dinner tonight (no flash)

Needing strength

Steve has been awfully unsteady since yesterday morning. When he woke up to get ready for work, he lost his balance twice -- never falling, thank goodness.

He returned to bed for more rest, waiting until the last minute to get ready for a day of important work meetings.

He's in bed today. We served him cinnamon rolls and turkey bacon in bed for breakfast, and all four of us have been in there to cuddle, read Valentine's Day cards and just have time together.

We both are worried about Thursday's MRI. Please join us in praying that the scan shows a smaller tumor. We both fear that the Damm Spot is growing, based on his left-side symptoms that are worsening, not improving, despite chemotherapy.

I rediscovered a quote this week. It's among the many words of wisdom that runs through my head when I'm worried.

"When you say a situation or person is hopeless,
you are slamming the door in the face of God."
(Charles L. Allen)

Wednesday, February 11, 2009

Finally home

Today's treatment was uneventful, except that it took much longer than expected. The lab results seemed delayed, then the drugs seemed delayed. And then our sweet nurse seemed to set the infusion pump for a slower-than-normal rate.

The leisurely pace did allow Steve to nap for about two hours. Plus I was able to meet two work deadlines.

We had hoped to see someone from Dr. M's office today. She had told Steve via e-mail that someone would stop by. We were in the building for more than six hours, and no one appeared. I asked Steve's infusion nurse more than once. I walked around the floor, looking and asking for a Dr. M team member. They were nowhere. (It's not their clinic day, so they're apparently away in a different office on a different floor.)

We want someone to look at Steve's slightly swollen foot and hand. (Dr. M supposes that the problem is circulation.) Plus he has a sore throat -- just minor. Plus his left side continues to refuse to cooperate.

Also, we've asked for a prescription for a temporary disabled parking permit. I can usually drop Steve off at the entrance of wherever we're going and then park the car. But there are times when I'm not comfortable leaving him alone -- in a big crowd or if there are no places to sit and rest.

Steve will continue to communicate with Dr. M via e-mail and call if necessary. And then we'll see her Thursday, Feb. 19, after his MRI earlier that day.

We pray:
That Steve will experience no adverse side effects from today's treatment
That today's treatment will kill the live tumor cells
That his sore throat doesn't develop into anything worse
That his stability improves and at the least doesn't get worse


For months we have been praying Lauren, a sixth-grader who attended our neighborhood elementary school before moving on to middle school.

Lauren was diagnosed last May with tumors in her spine. A few months later, the cancer had spread to her brain.

Sweet 12-year-old Lauren passed away Monday.

We now pray for peace and comfort for her dear family.

Live from the infusion room: Good counts

Steve's nurse for the day just stopped by the cozy infusion room to let us know that his counts are good enough for chemotherapy. We're waiting on the pharmacy to release all the drugs, and then today's cancer-killing session will officially begin!

Tuesday, February 10, 2009


Yesterday afternoon I opened the front door to check the mail and first found a giant package on the porch. (I also found a stray dog, but that's another story.)

The gift bag was filled with Valentine's Day treats -- paper plates and napkins, Pez dispensers, hearts filled with candy, fun pencils and erasers, a beautiful decorative tile and some gel sticky letters and hearts (shown above).

The Valentine's treat was a gift from our PTA president, Kindra, her family and the PTA board.

I was a member of the board last year. When Steve became ill, I abdicated my duties but never lost the support and friendship of the wonderful women who serve our sweet neighborhood elementary school. We are the grateful recipients of their prayers, gifts and hugs.

Isn't love grand?

Saturday, February 7, 2009

Daddy Daughter Dance

Katie and Steve danced the afternoon away at our community's Daddy Daughter Dance.

Getting an up-do, something Mommy can't do

Because I lack hair-styling skills, Katie and I relied on Sweet and Sassy for a fancy up-do. The girly-girl salon was a frenzy of moms and daughters, glitter, bobby pins, tiaras, hair spray and laughter. Katie loved her afternoon at the beauty parlor.

One of Katie's more exuberant poses

Katie also loved her red dress and the chance to pose for the camera.

Most of all, Katie loves her Daddy. They share special traditions. They read Skippy Jon Jones books together. They both like bananas and yogurt for breakfast. They like to dance together in the kitchen to "Been Caught Stealing" by Jane's Addiction.

Best friends Katie and Noe

Layne and Noe joined Steve and Katie as scofflaws at the dance. The suggested minimum age is 4. The girls are 3 and a half. We thought they'd be mature enough to go this year. From what I've gathered, we were mostly right. There may have been some minor 3-year-old-style fits on the dance floor. Nothing that couldn't be smoothed over after the dance with some ice cream.

Double-daters Steve & Katie and Layne & Noe

At the dance, the Damms and the Smiths met up with the Bassens and the Domens. The four girls and four daddies snacked, danced and played for an hour and a half in a ballroom that was decorated to resemble an enchanted forest. We're thankful for Layne, Bob and Jeff, who helped make the afternoon special for Katie and Steve.

Steve's instability is about as bad as it's ever been. That certainly wasn't going to stop him from sharing sweet moments with his Katie. Steve rested much of yesterday and this morning to conserve strength for the dance and has been resting since they got home.

I know they'll both cherish the memories of the afternoon, and we look forward to next year, when Katie will be "legal" to attend.

Thursday, February 5, 2009

Two days, no drama

We have made it through two days this week with no emergency visits, no need for imaging, no big scares.

We are big fans of drama-free days.

Steve has had no more kidney stone-related pain. He's certain that the stone completed its journey, but he has no tangible proof.

The pain and uncertainty of the day in the ER did steal a lot of energy from him. He is especially unsteady on his feet; his voice is weak; his left arm and hand refuse to cooperate.

And yet he worked in the office yesterday and today. Our super Steve is simply amazing. He is going to work from home tomorrow. And he'll rest all Saturday morning to store energy to accompany Katie to the daddy/daughter dance that afternoon.


It's actually inaccurate to say there's been no drama at home.

I had trouble deciding what Katie would wear to the dance. I bought a few things and asked her to try them on.
Cute, but too summery and casual
Not as cute, and much too casual
Katie clearly was not happy recycling her Christmas dress, even with new Valentine's Day tights.
This red dress is the clear winner.

We faced a little more drama when I explained that the other new outfits were going back to the store. (No worries -- Katie doesn't lack for pretty clothes!)

I can't wait to see Steve and Katie dressed up and ready to dance Saturday!

Tuesday, February 3, 2009

Theme of the week: Happy to be home

Steve was released from the ER in the late afternoon. We were happy to come home from St. Paul yesterday, but even more so today.

(I'll try to keep this narrative as sterile as possible for delicate readers.)

After the source of the pain was identified as a kidney stone, Steve needed to produce urine. But he couldn't.

I calmly insinuated that a catheter might be necessary.

Steve dislikes few things. Among them are hospital stays and catheters.

He tried.

No luck.

The RN stopped by and said that a catheter was likely.

"No," Steve said, as assertively as possible in his exhausted, drugged state.

The RN was taken aback and said he'd talk with the doctor.

Dr. Z thought maybe there was no urine to produce, so he did a quick ultrasound of Steve's bladder. That image revealed plenty of fluid.

The RN returned with another device to determine exactly how much fluid.

It was a lot.

They gave Steve some more time.


Dr. Z returned and said that a catheter was next. He warned that if the bladder wasn't emptied, his kidneys would stop working and other awful things would happen. Steve would need to be admitted, even.

As Dr. Z left, Steve declared that the race was on.

Steve won. He produced on his own, without a catheter, a few minutes before his deadline.


He was released with a prescription for pain medication. So far he hasn't needed it.

Apparently, the most pain comes when the stone moves from the kidney to the bladder. The passageway is tiny. When the scan was done late morning/early afternoon, the stone was in the right distal ureter -- the long, narrow passageway between the kidney and bladder.

In general, when a stone is 5 mm or smaller, there is no outside intervention recommended to help the stone on its journey. (Larger stones can be removed or pulverized.)

Steve will likely pass the stone sometime in the next few hours, but there should be little pain. Just in case, we have the pain meds.

Some reflections from today:
1. When Steve has pain or a problem, our first fear is that it's related to his brain cancer and/or treatment. We both find it somewhat refreshing that he still has regular old problems. "Even if they're the most painful ones I've ever had in my entire life," Steve says. "It's good to know I'm 'normal.' "

2. We continue to find great joy and comfort even in scary moments.

When Steve's nurse told him to go the emergency room this morning, I was about to leave the house to take Katie to preschool. My first thought was to call Julie, our dear friend and neighbor, who often leaves for work about the same time. I was looking for a phone with her cell number saved when the phone rang. It was Julie, of course! As I asked where she was, she pulled into a parking lot to turn around. She arrived in just a few minutes and whisked Katie off to school. While we waited, Katie sat in the driveway to write a thank-you note to Julie. It looked like a cute scribble but really went something like this: "Dear Aunt Julie, I love you. Thank you for driving me to school. I want to do it again. I love you. Katie."

We were never lonely in the ER. Steve's parents arrived quickly. They never hesitate to take care of us. Pastor Andy was there in no time. All three surrounded Steve's bed while he was in the most pain. Steve's colleague and our friend Lori dropped by. Liz and Holly delivered lunch and kept me company, lending moral support during some difficult moments and questions.

3. Even pain offers hope. As Steve said during today's ER adventure: "One thing about today. It's very life affirming. There's pain, but that tells you you're alive."

ER: Kidney stone

Steve has a kidney stone. Among all the possibilities, the diagnosis is the best we could have hoped for, according to the ER doctor.

The stone is about 2 mm, which is small enough that it needs to come out the natural way.

Steve will continue to take pain medication until he passes the stone.

We're still in the ER. We expect to be able to leave today.

ER: Pain meds

A nurse just gave Steve pain meds, so he is relaxed and in much less pain.

The staff took a while to see him. I may have been a little pushy. That's my job, right?

Jim, Betty and Pastor Andy are here, though just two at a time are allowed in the room.


Steve is having severe abdominal pain on his right side. We are in an exam room at the Plano Preby ER. Doctors are rounding, and they can't get here soon enough.

Steve rarely complains of pain -- or anything else. He says the pain is 8 or 9 on a 10-point scale.

I'll update when I know more.

Steve's foot

Steve's foot is still swollen, but no worse than yesterday.

Because the ultrasound ruled out the worst-case scenario -- deep vein thrombosis -- we're now going to just watch his foot. (He is at high risk for DVT because of the brain tumor and continued use of Avastin.)

We don't think it's a kidney problem -- that would most likely be indicated on his blood work. The swelling could be caused by poor circulation. His left side is the side affected by the tumor. Maybe circulation on that side is affected as well?

If his foot is still swollen next week, we'll ask to see someone from Dr. M's team during chemotherapy.

We are thankful that there is no pain or discomfort with the swelling.

We are also thankful that Steve avoided a hospital stay -- mostly because he didn't require immediate care. Also because:

1. Steve was able to sleep at home. He is the most easy-going person I know, but he will tell you that he hates sleeping at the hospital.

2. Cooper came home and his Daddy was home. Cooper had a rough emotional weekend. He had a great time with many activities -- birthday party; Destination Imagination workshop; time with Uncle Jim, Grandma and Papa; watching the musical Click, Clack, Moo: Cows That Type. But he also struggles when Steve isn't feeling well. Steve was particularly unstable this weekend. There were many tears on Sunday, and I just couldn't bear the thought of Cooper coming home from school with Steve in the hospital.

3. Yesterday my cold officially because the most painful sinus infection of my life. I had to go to bed before 7, and dear Steve took over the house for the rest of the night. I started taking antibiotics yesterday, and they seem to be working. It no longer hurts to chew, drink, sit up or breathe.

We appreciate all of your good wishes and prayers. We could especially feel your love yesterday. Thank you!

Monday, February 2, 2009

Good results

The ultrasound of Steve's left leg and foot indicated no blood clots!

Steve is calling Dr. M's office now for next steps.

We are overjoyed to get this news!


Steve noticed on Saturday that his left foot was slightly swollen. It's still swollen and looks a little worse today than yesterday.

Dr. M's office has ordered an ultrasound of his foot. They are looking for a blood clot.

Dr. M's nurse said to pack a bag. If the ultrasound shows a clot, he'll be admitted for treatment immediately.

So this morning we're scrambling. Liz will pick up Katie to take her to this morning's dance class. We're packing and will leave after Katie leaves. We hope to be at St. Paul's outpatient center by 11 a.m.

An ultrasound doesn't take long, and results are immediate, so we'll have an answer soon.

And if there's no clot, we'll continue to seek diagnosis until we have an answer.

I'll update as we know. Thanks for checking on Steve and for your prayers!