A more optimistic perspective

Today was Steve's follow-up visit at UT-SW. He had another MRI, more blood drawn (it took multiple sticks to get a good sample -- his veins are usually difficult but especially so now after so many recent sticks and cancer-related treatment) and a lengthy visit with Dr. M, his Dallas neuro-oncologist.

Dr. C in Houston was cautiously optimistic, which matches his general demeanor. Dr. M was much more enthusiastic, which also matches her personality and approach. She believes that the tumor may be dying altogether, that the image we see on the scan may be dying cancer cells. That, of course, is over-the-top, unexpected great news -- if it's true. We are slightly puzzled, though, about what to do with her reading. It's much more optimistic than Dr. C's analysis, which indicated cell death in the middle of the tumor and the remote possibility of the tumor shrinking over time.

One reason we are letting M.D. Anderson direct care is because of our comfort level with their aggressive approach. Their doctors seem more proactive from the outset. For instance, adding Accutane to the Temodar so early in treatment isn't routinely prescribed at UT-SW. Dr. M seemed surprised that Dr. C recommended the double dose of Temodar and the seven days on, seven days off approach and said that that was more aggressive than she would have prescribed.

All of that is background to explain why we're having trouble reconciling Dr. M's reading with Dr. C's reading. We trust Dr. C's plan of action, therefore we tend to trust his reading. But Dr. M's analysis is better news, and who doesn't want to latch onto and celebrate that? As we're learning throughout this process, there is seldom a definite answer to any one question. We both have faith, though, that this journey has a purpose.

As Steve has stepped down on the Decadron the past few days (down to 2 mg), his gait, left-side funtion and voice have suffered once again. He's returning to 4 mg today and will stick with that for a week, then drop to 3 mg and hold there for at least a couple of weeks. As the brain is healing, Dr. M explained, it's dealing with a lot of extra debris that continues to cause swelling-related symptoms. That could take months to resolve, so Steve may continue his love-hate relationship with the drug that allows him to function but also weakens his muscles and adds some extra padding to his face, neck and belly.

He hasn't taken Tylenol since Friday! The Diamox, which is supposed to reduce the production of spinal column fluid and the pain in the back of his head, seems to be working. His head pain is at a 1-2 on a scale of 1 to 10, which he considers manageable.

Our awesome health insurance approved Provigil (the energy booster) right away, so we paid $50 for a month's supply. We hope that good luck continues next month. He's been taking it since Tuesday and has noticed a slight improvement in his fatigue level. He's confident that will continue to improve.

Steve will begin taking the next round of Temodar (with all its Dr. C-prescribed additions) and the first round of Accutane (five times the dose normally prescribed for acne) on Monday. Once again, our amazing support group has come through, this time with all kinds of suggestions on combating dry skin related to Accutane.

Recap:

• Dr. M believes the whole tumor may be dying.
• We love that news and yet struggle to reconcile her analysis with Dr. C's.
• Steve's swelling-related symptoms are back, so he's increasing the Decadron again -- 4 mg daily.
• Temodar and Accutane (plus some other drugs) begin their work on Monday.

A million things that you and I can do

"There is hope! Finally, hope!

And no, this isn't over

No, we aren't through!

No, there's still a million things that you and I can do!"

(Lyrics from the Broadway musical Parade)

Just after we took flight this afternoon to leave the Houston area, I pulled out my iPod Shuffle. The first song was "This Is Not Over Yet," from the Parade soundtrack. Steve and I saw the musical about seven years ago, when I was pregnant with Cooper. We both love the story and the music.

The main character sings the song when he learns that he has a reprieve from the death sentence for a crime he didn't commit. He and his wife are celebrating their extended time together.

I found special meaning in the song after our visit at M.D. Anderson today. The news was about as good as we could get.

The MRI scans show that the tumor is about the same size as in January. It didn't grow! And there is necrosis -- a cluster of dead cells -- in the middle of the tumor. Water has filled in that spot. (New brain cells won't grow there.) Dr. C says there's no way to know if it was the radiation therapy or chemotherapy or both that punched the hole through the tumor. In addition, there is less edema (swelling) around the tumor now as compared to January.

Dr. C was optimistic about the treatment so far and has recommended some additional tools to fight the Damm Spot. Dr. C's plan is designed to keep the tumor at its current size -- making it smaller would be an added bonus. (But don't let that stop you from praying that the tumor will altogether disappear!)

Chemotherapy
Next week Steve will again start taking Temodar, the oral chemotherapy. His dose will be twice as strong as his first round. He'll take it each night for seven days, then take seven days off. That cycle will continue for 12-18 months. With that, he'll continue to take Zofran to fight nausea, an anti-pneumonia drug and an anti-malaria drug, which may help deter cancer cell growth because of its antimutagenic properties.

Accutane
Steve will also start taking a high dose of Accutane, usually prescribed for acne. Accutane in high doses somehow turns off and on whole sets of genes in tumor cells and makes those cells behave more normally. It can be effective in working against cancer stem cells, which are resistant to chemotherapy and radiation, taking away their leadership qualities or "stemness," as Dr. C says.

We learned the possible risks of Accutane, including extremely dry skin, lips and mouth; pancreas and liver problems; increased triglycerides; and depression. Steve will need to moisturize from head to toe every day and stay covered in the sun. (If you suffer from dry skin and have a recommendation of a lotion or moisturizer that works for you, please let us know!) He'll also have his blood checked monthly for internal changes.

Diamox
Steve has been taking acetaminophen almost nonstop since November to address the headache at the back of his head. Dr. C suggested he try Diamox, which can reduce the production of spinal column fluid and may reduce some of the pressure he feels on the back of his head. If it works, Steve may be able to give the Tylenol a rest for a while.

Provigil
This drug is prescribed for patients with narcolepsy or sleep apnea. It could also help Steve fight the fatigue that he's been struggling with. This is an off-label use that insurance companies aren't willing to finance; the drug costs $360 for a month's supply. A 2006 study showed that it dramatically improved quality of life for brain cancer patients. We don't have high hopes that our insurance will cover an off-label use for quality of life purposes.

In addition to blood work and an MRI, Steve discussed with Dr. C and his nurse his current symptoms, including:
Double vision
His right eye doesn't function as it should, so he has double vision to the right and straight ahead. Dr. C is not hopeful that this will ever repair.

Left-side weakness
As Steve is again backing off the Decadron (down to 2 mg daily), he's noticing some left-side weakness again. It would be best if he's off the Decadron altogether, but he may need to stay on a low dose to retain functionality.

Taste changes
Sweets no longer taste good. This is probably because of the chemotherapy and/or radiation. I think it's his body's way of reminding him to avoid sugar -- tumors love sugar.

Swallowing
Steve still has no gag reflex, which keeps him at an increased risk of aspiration. He must continue to thicken liquids for safety.

We'll meet with Steve's neuro-oncologist in Dallas this week to review the M.D. Anderson plan and establish routines for checking blood counts and other vital signs. (Dr. M here frequently works with Dr. C there via phone and e-mail.) The next MRI will be in about eight weeks.

As we were landing in Addison this afternoon, at the end of a smooth flight, another special song started on my iPod. It was our first-dance song at our wedding, almost 14 years ago. (We will both tell you it's much too long to be a first-dance song!) It makes us both weepy and happy at that same time. It makes us want to dance in the kitchen or family room or wherever we are when we hear it. I shared my headphones with Steve, and we held hands until it was time to leave the plane.

"Was there life before this love

Was there love before this girl I can see

Was there ever love for her before me"

...

You can count on me to stand and say

'Was there ever life before this wonderful day?' "

(from Pete Townshend's "Was There Life")

Quickly

We're headed back to the Sugar Land airport.


Dr. C was guardedly pleased with the damage done by the chemo and radiation. The Damm Spot is about the same size as in January, which is good news if you consider it could have grown. Even better is the hole in the middle of the tumor, now filled in with water instead of cancerous cells.

Steve is surprised by the news, as he was braced for the worst. His spirits are good.

I'll update more when we get home. Thanks for checking on Steve!

Updates to come

Good morning! We arrived safely in Sugar Land yesterday afternoon. Sally gracefully steered us through windy conditions. She said it was one of the bumpiest flights in her flying history. It was definitely the bumpiest flight in my history! My stomach recovered a few hours later. Steve wasn't phased. He held my hand for more than an hour and constantly reassured me that we'd be OK.

Jim picked us up, checked us in to the M.D. Anderson hotel and took us to the movies and dinner. We also stopped at the House of Pies -- a Houston institution devoted to 40 kinds of pie! A tour bus of sweet older ladies (we think they were members of the Red Hat Society) arrived just moments before us, so we had at least half an hour to choose a flavor (Washington cherry for Steve, French silk for me, strawberry rhubarb for Jim).

We'll walk over to the clinic for Steve's first appointment soon and update later this afternoon, after we meet with Steve's oncologist.

Headed to Houston

Sally will fly Steve and me to Houston early Thursday afternoon. His appointments are at 10 a.m., 11 a.m. and 1 p.m. Friday. At the 1 o'clock appointment, we'll learn the results of the MRI and talk about next steps with the oncologist. We plan on flying back to Dallas Friday afternoon.

Aunt Ami has been here all week, helping me with projects and everyday life around the house. Her timing was perfect -- both Cooper and Katie have strep throat, and we definitely needed an extra mom to help with doctor appointments, pharmacy visits, cuddling, child-entertaining. She'll stay here while Steve and I are gone.

We so appreciate all of your good wishes and prayers as we take these next steps in Steve's journey to healing. I want to share an excerpt from our dear friend Jackie's blog. She and Sydney (her daughter and our goddaughter) have lived in Shanghai since June 2007. They spent last weekend in Hangzhou, China, and visited Lingyin Temple (Temple of Soul's Retreat).

We also took a moment to burn incense and say a prayer as it was a Buddhist temple. Mine was for the speedy recovery of Sydney's Godfather, Steve, who we love and admire more and more everyday. There was also a room filled with dozens of statutes and in the middle were large statutes of Buddha. Sydney watched other people kneel on the yellow pillow in front of the large statutes and placed their head in their hands in prayer. Sydney insisted on getting out of her stroller and knelt down on the yellow pillow and said her own prayer. It was just so sweet.

From Easter

Questions and answers

This morning at breakfast, for seemingly no reason, Cooper finally asked what kind of sickness Daddy has.

We gave him simple answers. We told him that Steve has brain cancer. That the tumor in his brain stem, which is deep in the brain, is made up of bad cells and that the doctors are working to get rid of the cells. That the tumor is what causes Steve to feel tired, to not be able to walk well, to not be able to see well.

He asked if the tumor would cause Daddy to not be able to learn new things. We told him that we were thankful that this kind of tumor doesn't affect his ability to think or learn. As Steve was talking, he was crying a little. Cooper held his hand while Katie hurried from the table to get him a tissue. (Katie is particular about tears. They must be wiped away quickly.)

The conversation was brief. Cooper remembered that Jogging Club (an early morning school activity) was about to begin, so he excused himself from the table and ran to his room to get ready. He's in excellent spirits this afternoon.

Travel plans

After many weeks at home, it's time to start organizing for travel again. Late next week Steve and I will fly to Houston for follow-up appointments at M.D. Anderson. Steve will have blood drawn and checked and have MRI scans of his brain so we can see the chemotherapy and radiation therapy's good work.

A couple of weeks later, all four of us will travel to Chicago with Jim, Betty and Jim for a celebratory long weekend. Jim and Betty have wanted to treat us to a getaway to mark the end of Steve's radiation.

The kids and I have never been to Chicago, so we'll have lots to discover. If you have any suggestions of what can't be missed or what must be eaten, be sure to send tips along! We plan on visiting the Chicago Children's Museum, the Navy Pier and the Museum of Science and Industry. Steve and I hope to escape on our own for a tour of the Art Institute.

Steve continues to gain strength. He's been able to work long hours this week -- without a nap! We give great thanks for these strong "normal" days.

It's amazing how quickly the definition of "normal" changes. We feel years, not months, removed from our old, pre-cancer life -- when crises had a foreseeable end, when the source of exhaustion was too much work or play, when Steve was able to drive, wrestle with Cooper, lift Katie on his shoulders.

Steve and I strongly believe in making the best of any circumstance, in tackling a challenge with optimism and determination -- a value that's certainly been tested the past few months. We are so thankful for how countless friends, family members and even strangers have made it possible for us to realize the blessings despite Steve's many challenges.

Easter Eve

Steve napped and rested most of the day to store up strength to attend our church's annual egg hunt. The weather was beautiful today, perfect for hunting eggs and flying kites. We loved having Uncle Jim with us, too!

Steve reports that his left side is stronger today than yesterday. He loved the many jokes and funny stories you all sent this week. Thank you!

Improvement already

After just a one day back on 4 mg of Decadron, Steve already notices signs of improvement. He was able to wash his hair and put on his socks much more easily this morning. And his gait is steadier. He'll remain on this dose for a week, and then we'll talk with his radiation oncologist again.

Change in steroid plans

Today was supposed to be Steve's last day on Decadron, the steroid he's been taking since January to address the swelling in his brain around the tumor. It's not an ideal drug to take long term, as it causes all sorts of problems (including susceptibility to infection, ulcers, insomnia, change in muscle mass and fat storage) while it's taking care of the edema.

But as he's stepped down the Decadron dose (now down to 1 mg every other day), some of his neurological symptoms have returned. His left side is especially sluggish, causing fine motor and gross motor problems. For example, he struggles with buttoning his dress shirts and has been wobbly when walking.

After speaking with his UT-SW doctors, he's back on a higher dose of Decadron for a week. He'll take 4 mg a day, and we'll look for improved symptoms. Our prayer is the symptoms are resolved, which would indicate swelling is the culprit, not the tumor.

Good news

Steve saw his primary care physician today. Dr. T wanted to follow-up after Steve's recent upper respiratory infection. Dr. T says that Steve's lungs are completely clear. And vital signs showed his blood-oxygen level is back to 100 percent!

Update

Graduation
Steve graduated from radiation therapy on Tuesday! Everyone on staff congratulated him that day -- the valet parkers, the receptionists, the nurses, the techs and the doctors. The techs, who strapped him into the mask and onto the table and administered the X-rays every day, gave him a certificate and let him take home the mask. (It's a plastic/nylon mask custom-designed for his face and head. He would fit his head in the mask, and then the mask was bolted to the table for treatment.)

That same night was his last night of chemotherapy for a few weeks. For now, he's been able to drop a number of drugs -- Temodar (chemo), Zofran (for nausea), Dapsone (to prevent pneumonia) and Chloroquine (anti-malaria drug that the M.D. Anderson oncologist recommends along with Temodar). He'll start that regimen again in a few weeks. He'll take those drugs for seven days and take 21 days off for 12-18 months.

Next trip to Houston
His next scheduled appointment is April 4 at M.D. Anderson. He'll have blood drawn and tested, have an MRI and meet with Dr. C, his oncologist.

The MRI will show the progress so far. Dr. A, the radiation oncologist, has warned us multiple times that this MRI will be messy and may look worse than the January MRI. The radiation continues to work long after the last X-ray was pointed at Steve's brain stem. And there's a lot of repair work taking place. But oncology likes an earlier-rather-than-later scan to get an idea of what we're working with.

The April 4 scan will be a baseline. A recurrence will be defined as (1) any new growth on the original tumor and/or (2) new tumors in the brain. Brain tumors are just awful. They spin off their evil cells. Those cells hide out in the brain. Sometimes they form new tumors. The continued chemotherapy should fight those sneaky cells, but chemo isn't always successful.

A recurrence could be treated with other drugs Steve hasn't yet used. Or he could be eligible for a trial. But there will be no more radiation therapy.

Steroid slowdown
This is also the week he's weaning off the Decadron. Yesterday he took none. Today he took 1 mg. He continues that pattern for four more days, and then he's off the steroid altogether.

Symptoms
Overall, Steve is still doing pretty well. But there are symptoms that we can't ignore. His fatigue is debilitating. There were two days this week when he really struggled to wake up and get out of bed. His body, especially his left side, is sluggish. His headaches are much stronger. His stomach is acidic, and his appetite has declined. He's managing to walk, work and read with double vision. Sometimes he's frustrated by it all -- like when he missed last night's soccer game and Cooper's second goal of the season. Most of the time, he's cheerful and hopeful and continues to make himself and us laugh

Last day of radiation therapy

Today will be Steve's final day of radiation therapy and the last day of this first round of chemotherapy.

The radiation oncologists did not add on to the total days, but he did miss treatment last Thursday, when the weather turned snowy and the roads were packed with nervous drivers. This nervous wife called off treatment for the day, extending the treatment plan to today.

Dr. G, the resident, explained to Steve that this final treatment will hit the maximum tolerance recommended for the areas they're targeting. He also learned that they've avoided shooting X-rays through his ear in order to save his hearing -- very thoughtful! You can see where the X-rays have entered, as there are cute little bald spots surrounding his ears.

Steve is having a rough day. He's normally up and out of bed by 6 a.m. His body just wouldn't cooperate today, so he's staying in bed until we have to leave for treatment. He says his body feels extremely heavy, as if he's filled with sand. And his headache is excruciatingly painful today. We're not sure if it's accumulated fatigue, which has been catching up with him the past few days, or the reduced dose of Decadron, which dropped to 1 mg yesterday. It's probably a bit of both.

When I took Cooper to school this morning, he told me he never wants me to break the law. I told him I already try not to (well, except for driving a bit over the speed limit, which he admonishes me for frequently) and asked why he was worried. He answered that there would be no one to take care of Daddy if I was in jail and that Daddy would have trouble taking care of him and Katie. I promised to do nothing that would land me in jail. We talked some more about his concerns, and then he had to walk into the building.

Steve was able to go to the regional Destination Imagination tournament on Saturday. Cooper and five of his first-grade friends performed their play in front of judges and a huge crowd of parents and siblings, completed an instant challenge and were recognized at a rousing awards ceremony that afternoon. The tournament was at Plano Senior High School, which I compare to a junior college campus -- multiple buildings are separated by courtyards, a pond and too many stairs for a guy who's having trouble walking. We were thrilled that Steve was able to attend and see what the team had been working on for months, but he was exhausted by the end of the day and spent most of Sunday recovering.

At the DI tournament Saturday

This first round of fighting the Damm Spot has been made so much easier by countless folks. There's not a single need or request that has gone unanswered. We are surrounded by the world's best and most patient drivers, chefs, baby sitters, dish washers, hand holders, note writers, gift givers, prayer warriors, dog walkers, bakers, clothes folders, shoppers, teachers, coaches, co-workers, doctors, nurses, errand runners, listeners, huggers, singers, surprise arrangers! Thank you for easing the burden, showering us with love and reminding countless others that goodness and hope abound.

Countdown

Steve's last day of radiation treatment has been scheduled for Monday, March 10. We learned today that Dr. A is considering adding an extra day or two. (There are limits on treatment, and Steve's original schedule had the fewest number of possible days.) Dr. A will let us know by Friday his decision.

The last day of radiation will also be the last day of this round of chemotherapy. Then he'll take about a month off and start a new chemo schedule -- most likely seven days on, 21 days off.

His next scheduled MRI is April 4 at M.D. Anderson. We'll meet with Dr. C, our Houston oncologist, later that afternoon to learn the state of the tumor and next steps.

Folks continue to be amazed by how well Steve is doing. He's worked in the office the past two days. He's getting around relatively well, though he's not super steady on his feet. My protective (overprotective?) traits are tested often, and I frequently remind him to slow down a bit.

As with so many symptoms, we're not sure if his unsteadiness is related to the tumor and/or swelling or the effects of the steroid. His legs have lost so much muscle mass from weeks on the Decadron. He is continuing to step down the dose. The past week he's been on 4 mg per day. Today he dropped to 3 mg. He'll drop to 2 mg Friday and 1 mg Monday.

The tremors have improved. Last Friday may have been his worst shaky day (it was awful and scary for a few hours), but since then he's noticed fewer problems.

His blood oxygen level remains lower than ideal -- today it was 94% -- but no one seems concerned.

He's exhausted, worn out from radiation, chemo, emotional wear and tear and his body coping with so much so quickly. Importantly, though, his spirit isn't worn out.

His vision remains his most troubling symptom. The double vision just isn't improving. It's not getting in his way too much, though -- he continues to work, read books with Katie and Cooper (tonight included Click, Clack, Splish, Splash with Katie and Harry Potter and the Order of the Phoenix with Cooper), read on his own (he recently finished Wicked and Steve Martin's memoir, Born Standing Up) and watch movies and TV (tonight's primary results are keeping him up late). We give thanks every day that the awful Damm Spot has not stolen his cognitive abilities or sense of humor.

Love songs

Steve is a member of our church's adult choir but hasn't been able to participate in a few months. He misses the group, and they obviously miss him.

About 20 choir members caravanned north tonight to gather in our family room and minister to Steve and us. For about 45 minutes, they sang gorgeous hymns and anthems, filling our home with beautiful music, warm wishes and love.

Jim and Betty, both members of their own church choir, were here and joined the circle of beautiful voices. Steve sat in the big green leather chair (which belonged to his Grandpa Damm), next to the piano, at which Sharon H. played.

Katie was often in the middle, dancing, clapping and/or singing her own tune. Cooper came in and out. He decided that he wanted to direct the singers (though Debbie was certainly doing a great job on her own), so he ran to his room to fashion a baton out of Legos. He was dissatisfied with the result, so he left and returned again with a long wooden block. Still not convinced that he had the choir's full attention, he ran to the kitchen and selected a wooden spoon. He also lobbied Debbie with a request for "Little Drummer Boy."

The night's songs included "It's Me O Lord Standing in the Need of Prayer," "The Church's One Foundation," "On Eagle's Wings" and Steve's favorite, "Creation Will Be at Peace." Oh, you should have heard the voices. It was breath-taking. All that love alone may not cure Steve's cancer, but it carries tremendous healing powers and the hope for miracles.

We closed with a beautiful prayer.

Then Cooper reminded Debbie of his favorite song, and the choir jumped in a cappella to sing "Little Drummer Boy." (Grandma Alice Cooper, Steve's late maternal grandmother, years ago gave Cooper a music box that plays the song. The box was the inspiration of his request.)

Amazing baker Zita sent with Andy a huge platter of cookies and brownies, and we snacked on the treats before saying goodnight to our sweet visitors.

The Lord bless and keep you

The Lord make His face to shine on you,

And be gracious, gracious;

The Lord bless and keep you

The Lord lift His countenance on you,

And give peace, give you peace;

Shalom, shalom.

"Don't take anything for granted"

Steve reports that it's a beautiful day. The two of us enjoyed lunch together before his urology appointment. The super friendly nurse removed his catheter after almost a week, and he's now able to empty his bladder on his own. (It's a function he says one should never take for granted.) Cooper, Katie, Steve and I enjoyed dinner together, and Steve was able to bathe the kids by himself and get them ready for bed.

Symptom update:

• His voice sounds stronger.
• The right-side tremors continue to come and go. They're most noticeable when he's eating.
• He's not as steady on his feet. The radiation oncologists suspect the steroids are partly to blame. Decadron changes where fat settles and thins muscle mass. His normally strong runner's legs are becoming increasingly thin.
• His fine-motor coordination has declined in the past two days.

Selfishly, I'm thankful that Steve is so positive today -- it helps lift my spirits after a particularly difficult week.

Good deed

Steve is getting a little more stable each day following his back-t0-back ER visits. He will see a UT-SW urologist this Wednesday, and we expect the catheter will be removed then. He still has occasional right-side tremors. He's practicing his breathing and notices an improvement on the spirometer after he blows up balloons.

Because he's focusing on rest and recovery, Steve has had to miss some Cooper events this weekend. Jim, Betty and/or Jim stayed with him while we were out. On Saturday, the Dolphins returned to the soccer field for their sixth consecutive season. Cooper was especially scrappy during this game and scored a goal late in the fourth quarter -- unusual for our boy, who is usually more interested in defending.

On Friday night, Cooper, Papa (Jim) and I attended the Pack 443 Blue and Gold banquet. Cooper and 11 other Tiger Cubs were awarded their Tiger Cub patch, earned after completing 15 activities in specific achievement areas. When a Cub receives a patch, it's first attached upside down. It's turned right side up after the boy performs a good deed.

About a minute after we walked in the door Friday night, Cooper walked over to the big comfy green chair where Steve was sitting and offered to help him up. He said he wanted to help Daddy get up so he could give Mommy a hug -- and that would be his good deed.

Photo that never fails to make me smile

October 2005

Home again

Steve and I are home after his second ER visit in two days. He's resting now.

He felt "off" all day yesterday. He started having tremors on the right side; he said he felt shaky even in his head. The shakiness comes and goes and seems to disappear when he's lying down. The oncologist's nurse, who we consulted by phone, thought the tremors could be related to the fatigue and trauma of being in the ER for so long the night before.

When we went to bed last night, we both had a sense of dread and fear. We just felt unsettled. He woke me up sometime after 1 a.m., saying he needed to go to the emergency room. He was unable to use the bathroom at all, even though he felt he needed to. (I'll try to keep this as benign as possible for sensitive readers.)

I spoke with the oncologist on call, who suggested he should be seen. She also said it would be OK to go to a local hospital instead of driving all the way to St. Paul. I called Andy and Julie, who live behind us, and within minutes Andy was at our house, allowing us to leave.

Will, who was leaving work, met us at the hospital. Betty arrived soon after. Meanwhile, Sharon was leaving Rockwall to get to our house so Andy could go back home to their little guy, who has an awful cold plus asthma.

A kind triage nurse found a room for Steve within about 45 minutes of our arrival at Presbyterian in Plano. (The ER was full because the beds in the hospital were full. Only six of the 18 ER beds were available for incoming patients.) He was catheterized, which offered immediate relief. The ER doctor consulted with Steve's oncologist on the phone. They drew blood and took an X-ray of his stomach and an MRI of his lower back. His bowels were impacted, most likely a side effect of the chemotherapy and anti-nausea medication. Nurses helped take care of that problem.

Layne made a surprise Starbucks delivery; Sharon took charge of the morning routine with the kids and cleaned the kitchen; Liz took Cooper to school; Betty took Katie to preschool; Don visited us in the ER just before Steve's release.

About eight hours after we had arrived, we left for home. He is still catheterized and needs to follow up soon with a urologist. The best guess is that the impacted bowels were pressing on his prostate, causing urinary retention. The good news is none of it seems directly related to the cancer -- just an unfortunate side effect of the treatment.

The emotional and physical toll of two ER visits in one week is overwhelming. But Steve still rarely complains. He says today he's even more angry with the tumor. I suggested he stay home from radiation therapy today to rest (it's OK to miss a dose and tack it on the end), but he's too eager to keep fighting.

Another ER

We are at the Plano Presby ER. Please pray for Steve this morning.

At home

Steve is catching up on sleep this morning after a long ordeal in the ER. We arrived home about 11:45 p.m. and fell asleep about 12:30 a.m. (Betty and Sarah took care of Katie and Cooper last night while we were away.) Steve was happy to eat breakfast with Katie and Cooper this morning before going back to bed.

The official diagnosis is atelectasis lung bases with mild hypoxia. That means that some of the little pockets of air in his lungs have collapsed. He has been directed to practice deep breathing throughout the day and blow up balloons to open the lungs more. We are to pay close attention for shortness of breath as well as pain or hot spots in his calves (which could indicate pulmonary embolism).

I spoke with his oncologist's nurse this morning. She suspects that the atelectasis is caused by the tumor. The tumor is sitting in a crucial area of the brain. It's damaging nerves that communicate with essential systems, including respiratory.

We continue to pray that the radiation therapy and chemotherapy are killing the tumor cells and that his body starts to repair damages in the brain stem.

Good news

The X-ray showed no pnuemonia and the CT scan no clot. There are little collapsed pockets in his lungs. He needs to practice deep breaths. And we are about to go home!

ER

We've been at the St. Paul ER since 3:20 this afternoon. The concern is that Steve could have pnuemonia or a blood clot in his lungs.

Dr. M's office told us to come here because his blood oxegyn level is 93 and he has slight wheezing. He's at a high risk for pnuemonia and clots because of his condition.

They drew blood around 6 p.m. and took chest X-rays shortly after. He's lucky to have a room -- some patients are on beds in hallways. The flu has hit Dallas hard.

I'll update when we know more.

Stepping down

Steve is down to 8 mg of Decadron a day, a big drop from the 24 earlier this week (and the 40 mg he was on post biopsy). So far he's handling the change well. He slept about 9 or 10 hours last night, the most he's had since December, which he attributes to the lower dose of steroid.

His cough and congestion worsened throughout the week, and yesterday he started an antibiotic to help. (Katie also started a course of antibiotic for strep throat. Let's hope Cooper and I stay well!)

Steve's voice has improved all week. It's not back to "normal," but it's definitely stronger and less hoarse.

His vision is about the same as in the last update. He can see well to the left, OK straight ahead and double to the right.

I think two months of exhaustion and stress caught up with me yesterday. I slept about 11 hours, possible because Katie slept in and Cooper was at a sleepover.

We're staying in this weekend to stay warm and dry and let everyone rest. Cooper's first soccer game of the season was scheduled for today but canceled because of rain. We had a great week with Ami, who's heading back to Austin, and are enjoying a visit this weekend from Gretchen, who flew in from Florida (but left the sunny weather at home!).

Good blood counts

The neuro-oncologist's office called today. Steve's blood counts are just right! This is great news.

His BUN (blood urea nitrogen) test indicates elevated kidney function. The RN suspects it's because he's not drinking enough, which is highly probable, given the restrictions on his drinking (only thickened liquids). So I've been charged with encouraging him to drink more.

We saw the radiation oncologist and resident this afternoon. They're pleased with how Steve has reacted so far to treatment. They are as ready as we are to step down the Decadron. That process begins today.

Now we're all home for the day. Cooper is reading aloud to Aunt Ami. Steve and Katie are cuddling and watching Charlotte's Web (the vintage animated version). We'll sit down soon to tortilla soup for dinner and try to stay warm!

Another week

Steve begins his second week of chemotherapy tonight. He's still doing well with the Temodar, with no obvious side effects.

Today was his first blood draw related to the chemo. The lab results will indicate how well his blood is reacting to the medicine. We're especially praying for high platelet counts. If his counts have dropped significantly in the first week, they'll most likely have to pull him off the Temodar.

He can now see just one of everything when looking to the left and to the front a few feet. The double vision on the right remains. But he's feeling stable enough to go without his eye patch almost all day.

After his radiation therapy tomorrow, we'll visit with the radiation oncology doctors again. We're going to ask about slightly dropping the level of Decadron he's taking. The steroid side effects are mounting -- a rash on his abdomen and back, bumpy skin on his face, which is swollen. And that's just what we can see.

Aunt Ami is here for the week, taking care of all of us, which allows me some time to catch up on work projects, run some errands, maybe even see a movie with Steve this week!

Many of you have asked about Katie and Cooper. They are both handling the changes and uncertainty in their own ways. Katie is fascinated by Steve's scars on his head. She calls the stiches he had after the biopsy "healings" and often talks about how the doctors took the healings away. She likes to rub his head and asks almost every day, "Daddy, how are you feeling?"

Cooper, on the other hand, wants to know nothing about Steve's illness. It's his own way of coping, and we've been assured by a trusted play therapist who knows Cooper well that that's OK. If he asks questions, we answer them simply and truthfully. But he hasn't asked in a long time. He gets skittish when Steve and I talk about doctor's appointments, worried that maybe we won't be home when he wakes up in the morning (a casualty of us being gone for three out of six weeks in December and January). We don't hide the fact that Steve has many doctor's appointments. When we talk about them, though, we're careful to specify how long the appointment is expected to last and emphasize that we're not leaving the Dallas area.

I visited with the play therapist today. The appointment was a great comfort to me. She reminded me that children who grow up with no adversity, who never face challenges, often have trouble as adults coping with real life. Those who are forced to deal with illness, loss, financial hardship, other issues, often fare better. They're better prepared for grown-up challenges. She also reminded me that children who are loved and cared for have a sense of security that stays with them for life.

Treatment update

We are thrilled that Steve has not experienced any troubling side effects from the Temodar so far. He takes the anti-nausea medicine about 30 minutes before bedtime and then takes the chemo drug right before turning out the lights. He's not felt any discomfort.

Yesterday was the first day of the formal radiation therapy. Until yesterday, the machine was shooting X-rays at a crude target, aiming for the brain stem in general. Beginning Wednesday, the coordinates and paths were more exact. The noticeable difference so far is that the treatment time is longer and the table he lies on moves during treatment. His fatigue level is about the same, though he made it through today without a nap.

His double vision is improving some. He wore the eye patch very little today and worked on focusing better with both eyes.

His voice is still weak, some days more than others. It's hard to tell how much is related to the 10th cranial nerve weakness vs. the cold he's been fighting. When Dr. G (radiation oncology resident) examined him Tuesday afternoon, she still found no sign of pneumonia. And now that he's started chemotherapy, he's on a drug that is supposed to stave off pneumonia.

Through all of this, he's worked every day this week -- from home or one of his offices. He enjoys being around his colleagues, solving problems, focusing on something other than cancer. We are so thankful that his responsibilities allow him to work from home sometimes and to sit down most of the time.

Once again, we've made it through the week by relying on so many of you -- your time, meals, driving, cards, gifts, prayers, good wishes, offers of help not yet taken. Thank you!

Good morning

Steve made it through the night after his first dose of chemotherapy with no nausea! Hooray!

Unfortunately, he didn't sleep much last night. He was hot (it does feel like late spring instead of late winter), restless and thinking too much. He estimates he slept about two or three hours total.

Other symptom updates:
1. Double vision is still awful. He's wearing the pirate patch almost all the time now and is extra cautious when walking. He is unsteady on his feet but is able to walk slowly for a while.
2. His head pain remains at about a 2 (out of 10) while on extra-strength acetaminophen.
3. He's developed a congested cough. Dr. G (radiation oncologist) examined him yesterday after his radiation treatment and said she heard no crackling in his lungs. Today is the scheduled clinic day (when patients are examined in addition to receiving radiation), so the doctors will see him again.
4. His voice is still weak, with wavering moments of strength. He's drinking only thickened liquids through a straw now as part of the campaign to prevent asphyxiation. (Thanks, Jen, for your tutorial in swallowing issues!)

Steve just finished showering: "Good shower. I feel good. I feel strong. Oh, I'm so glad."

Big week ahead

Tomorrow is a big day, as Steve adds chemotherapy to his treatment routine. We're both anxious about how his body will react to the chemo on top of radiation.

So far, the fatigue from radiation therapy has been severe. The first night it hit him about 6:30 p.m. while the four of us were eating dinner together. He felt as if he just couldn't sit up any longer. But he hated to leave the table and go to bed before Katie and Cooper went to bed. He realized that he couldn't fight the fatigue any longer, though, and went to our room. Katie and Cooper followed him. As he was settling in, Cooper sang him a lullaby. Katie cuddled him. Steve and I both cried.

He worked in the Carrollton office Friday before his treatment. After we came home that afternoon, he rested for about two hours. The rest of the night was better, and he was able to enjoy a pizza dinner and movie night. (Bruce brought Night at the Museum for the boys to watch while Katie was sleeping and I was next door for monthly dinner and bunco.)

This weekend Steve has been taking naps or sitting down when his body tells him he needs it. He's still not getting enough sleep, though, which exacerbates his vision troubles.

We're not sure how his body will react when he adds the Temodar and other drugs to the mix tomorrow night. We hope he sleeps straight through the night with no nausea.

Home from first treatment

Steve is resting now after an eventful day.

After getting Cooper to school and Katie to preschool, we headed south to the cancer center. The imaging folks took care of him first, taking more MR images of his brain. The images showed some growth since the last UT-SW scan -- not surprising, as recent M.D. Anderson scans also had indicated growth.

Then we met with the radiation oncology resident (Dr. G) and her supervising doctor (Dr. A). While the formal plan for his radiation therapy isn't complete (they needed a recent MRI), they weren't comfortable with waiting any longer to begin treatment. So today they started him on radiation therapy based on 2-D mapping (instead of 3-D mapping). From what we understand, they are aiming for a conservative target now and will get closer to exactly what they're aiming for sometime next week, when the formal plan is ready.

While we were in the exam room, Steve's co-workers Lori, Ray and Wendy popped in to check on Steve. They were just in time to whisk us away for lunch, giving the doctors time to map out the temporary radiation plan.

After lunch, we returned to the cancer center, where Steve received his first treatment. He reports that it was quick and painless. The treatment continues now for about six weeks, every weekday. (He won't start taking the oral chemotherapy until Monday.)

Steve's voice problems apparently are caused by damage to the 10th cranial nerve, which is one of the most crucial of the cranial nerves. It serves the throat, larynx, trachea, lungs, heart, esophagus and most of the intestinal tract. He's lost most of his gag reflex and is at a high risk of asphyxiation. He may begin to have trouble swallowing thin liquids (apparently without warning), including water and juice. So we're using a product called Thick-It that thickens liquids without adding taste.

Thank you, Zita, for taking care of Katie after school, and Christie, for taking care of Cooper. We also appreciate all the good wishes for today and the many who have volunteered to help now or in the future.

Radiation tomorrow

We have a change in plans because of some worsening of Steve's symptoms. His voice has become weaker and more hoarse. His double vision, which had been improving slowly since the biopsy, got much worse overnight. His right side is tingly, a new symptom altogether. And he feels more fatigue than "usual."

He spoke with the neuro-oncologist's RN and the radiation oncology resident today. The resident decided to have him come in tomorrow for radiation, instead of trying to treat the symptoms with an increase of steroids.

He already had an MRI scheduled for 10:15 a.m. Thursday. He'll keep that appointment, and then we'll just wait around for the radiation therapy, whenever they can work him in. He won't start the chemotherapy until next week.

Thank you to the many of you who have already registered with our "Damm Family Helpers" site. If you're still interested, you can log in here. I'll be adding additional volunteer opportunities, especially driving shifts, over the next few days.

Getting ready for treatment

We spent much of yesterday and some of today at the cancer center, getting ready to fight the Damm Spot.

Radiation
We met the radiation oncologist who is directing the radiation therapy (as well as his resident, nurses and technicians). Dr. A has an interesting bedside manner. He's not unpleasant, just different than what we've become used to.

He told us, "The unfortunate thing about this tumor is its location." I sort of laughed in response -- as if the only thing bad about the tumor is its deep, dark hiding place.

When I asked how many of these tumors he's treated, he answered that an adult glioblastoma of the brain stem is "as rare as hen's teeth." Sadly, they do have lots of practice with children who have a similar tumor in a similar location.

Dr. A will determine the best kind of X-rays to use and work with others to map the best entry points for the radiation. We'll meet with him and/or his resident once a week so they can check Steve's symptoms and reactions.

Today Steve had a CT scan as part of preparation for the therapy. And he was fitted for a mesh mask that he'll wear during each treatment. The mask protects his face and ensures that he'll be positioned in the exact same place each day so that the radiation will be directed exactly where the doctors want it to go. It's crucial that the X-rays hit the bad cells and, as much as possible, avoid the good tissue. There are many risks with the radiation -- his vision could get worse, he could lose his hearing -- but they are definitely worth the potential outcome.

We'll return Monday for a simulation and Tuesday for the first day of radiation therapy. His standing appointment will be 3 p.m. Monday through Friday for 28-31 days.

Oncology
We also met Dr. M, the neuro-oncologist who will take care of Steve for many months to come.

She acknowledged that reaching a diagnosis has been messy and painful. She told us we'd never forget that pain and that she's eager to help us close that chapter. Now we start the next journey -- treatment. We both felt so encouraged by her candor, optimism and attitude.

She will oversee the chemotherapy and its effects. Steve will start taking Temodar next Tuesday night, a few hours after his first radiation treatment. He'll stay on that oral chemo for the duration of the radiation, every day including weekends. The day he stops radiation, he stops the Temodar.

Then he'll take a short break before starting monthly cycles of Temodar -- probably a week every 28 days for 12 months.

We're in for some rough weeks, we know. But Steve shows no signs of fear of the fatigue, potential increase in current symptoms, potential for new symptoms, possible nausea. We only wish we could start killing those rogue cells today!

Peace

Steve continues to get a little better each day. His chief complaints (not that he's complaining) are double vision, fatigue and headaches. His spirits were definitely lifted today by so many warm hugs and wishes from friends at church and visits from family members this afternoon.

Monday will be a full day with appointments at the Harold C. Simmons Comprehensive Care Center on the UT-SW campus. We should learn more about when treatment begins and what kind of schedule to expect over the next six weeks.

Today, for the first time since Dec. 11, I woke feeling a sense of peace and calm about Steve's condition and future. Both Melane and Julie had recently described similar feelings -- a calm after the storm.

I've had the chorus from one of my favorite hymns running through my head all day:

It is well, with my soul,

It is well, with my soul,

It is well, it is well, with my soul

I've always loved the song's message of hope and embrace it now more than ever.

Making life easier

As we focus our efforts on fighting the tumor (now officially known as Spot), we continue to give thanks for the countless selfless acts on our behalf. As before, this isn't an inclusive list -- my record keeping and memory are, understandably, not at their best right now! Please know that every act of kindness is making this journey much easier.

Jim, Betty and Jim: Took care of us during the Houston biopsy experience, providing hotel, meals, running errands, whatever we needed. Betty this week stayed with Cooper and Katie while we were in Houston. Brother Jim shuttled us from Hobby to the hotel this week. And he helped with projects around our house this weekend.

Ami: Arrived for the third time in four weeks -- this time with no notice -- to take excellent care of Katie and Cooper, leaving her own sweet family behind. She spoils us when she's here and ensures that the household runs smoothly.

Betty's Lunch Bunch friends: Paid for our most recent Houston hotel stay and meals

A group of anonymous donors from our church: Sent a generous check to help with expenses

Kelly S: She picks up laundry and returns the clothes the next day clean and folded

Melissa: Researched, purchased and shipped a spare car seat for our growing Katie

Mike: Helped Cooper craft his first Pinewood Derby car for Cub Scouts

Bruce the Boss: Helped with crowd control at this weekend's Pinewood Derby

Mary MT: Provided tickets to Houston and a pleasant ride to the airport

Sally: Flew us home Friday, allowing us to spend much of the afternoon with our babes

Jen: Showed up at our front door at the exact moment I needed a hug

Leslie and Stephen: Surprise delivery of fresh berries

Bledsoe staff and family: Continue to provide outstanding care and support to Cooper and our family

Transportation for Cooper: Beth B, Bill and Cathy, Christie, Laura, Liz and Layne

ECDP (Katie's preschool) staff and family: Offering a stable, loving environment for Katie

Don and the HCUMC staff: Instant availability, counsel and wisdom

Lori and Ray: Tracking down records, driving Steve home, keeping him involved with work

Children's and PFC friends: Who have been patient with Steve's status and available for research and advice

My many bosses: Who haven't yet complained (at least to me!) about sometimes missing deadline

Carolyn and all the DI moms: Took over the Destination Imagination team that I had been coaching

Mary and Lorrie: Took charge of our adult Sunday school class

Meals and more from: Jan and Lou; Mary MT; Zita and Andy; Lorrie and Tom; Kerri M; HCUMC choir; Jennifer and Ryan; Joel and Theresa; Carole; Debbie; Ron and Celeste; Nicole; Mary and Kevin; Layne and Liz; Holly and Bob; Will and Holly; Kris and James; Bunco girls (and I know I'm missing so many other excellent cooks!)

Help around the house whenever I've asked: Julie and Andy, Sharon, Beth B, Liz, Allison, Amy, Meghan, Denna, Betty, Will and Holly, Mel and Greg

Prayers, behind-the-scenes scheming, cards, advice, gift cards, letters, phone calls, notes, fruit baskets, books, stories of miracles, people to contact for advice on treatment and past experiences from many listed already and so many more of you

Grade 4

The invader has officially been classified as a grade 4 astrocytoma, also known as a glioblastoma. It is the most aggressive kind of brain tumor. It has recruited blood vessels to help it grow.

If you look at the literature related to an inoperable glioblastoma, the outlook is grim. Dr. C told us, when asked, that some patients have about four to six months to live after diagnosis. But he also told us that they are treating Steve, not a statistical group or population. They are treating an otherwise healthy 39-year-old father of two, who until mid-December ran about 12 miles a week, who eats well, who doesn't drink or smoke.

The patients who do the best, he said, who outlast the statistical median of one year, are those who are engaged in life, who focus on family and good things. They don't sit and stare at a calendar.

Treatment plan
We meet Monday with two doctors at UT-SW in Dallas -- a radiation oncologist and an oncologist who will carry out the treatment plan drawn by Dr. C and his team.

He'll need five to six weeks of radiation, targeted at the tumor.
The goals of the radiation:
Prevent the tumor from growing more
Improve Steve's symptoms
Reduce the bulk of the tumor

Along with radiation, Steve will begin a 42-day cycle of Temodar, an oral chemotherapy that he will take every night before bed. (I learned today that if we had to pay cash for the 42-day dose, we would owe almost $12,000. Instead, our insurance should cover the cost, minus our very low co-pay.)

We'll return to M.D. Anderson a few weeks after radiation therapy is complete for a scan to get an idea of how the tumor has responded. There's just this one course of radiation, but chemotherapy will continue on a schedule yet to be determined.

Possible side effects
If the radiation is doing its job, it will kill some of those awful tumor cells. When that happens, there will be some additional swelling, which will increase Steve's symptoms. The doctors will try to control the symptoms with the steroid he's taking.

As the treatment continues, fatigue will affect Steve. He also may experience nausea, though he'll have some preventive drugs.

One of the biggest risks is a reduced platelet count, which would make him much more susceptible to infection.

Looking forward
We are eager to meet with the team here that will help to take care of Steve the next few weeks. We look forward to a few weeks at home, with no planned overnight trips to hospitals. We are so ready to fight this tumor, bracing ourselves for the inevitable ups and downs associated with the treatment.

Steve and I talked today about one of the hidden gems in his brain cancer journey. There are more treasures in this awful situation than I could have imagined, and one of them is the blatant reminder that today is truly a blessing. When tomorrow comes -- wow, what a gift.

Now, don't get the idea that we dance around the house celebrating the Damm glioblastoma. Sometimes I'm surprised that we still have tears to shed. There's been a lot of uncontrollable sobbing. Fear grabs us throughout the day. The unpredictability of our schedules and routines has created more chaos than any of us are comfortable with.

Still, we know we are loved by God and by friends and family. And we have faith in miracles.

Name suggestions

My mom suggested that Steve's tumor have a name so that when it's gone, we can write it on a piece of paper and burn it.

Weeks ago, we started calling it "the Fonz" because it rhymed with "pons," the tumor's current home. That never really caught on.

I suspect my late Gramma Kathryn has a name for it that's not repeatable.

So, if you're feeling creative, perhaps you can e-mail us your suggestion or leave a comment here.

Steve's new 'do

Had we thought through the biopsy process a bit more, we would have shaved Steve's head before the surgery. After the biopsy, he had two strips of bare scalp on the back of his head, surrounded by regular Steve hair -- hair that can't be washed for eight days.

Yesterday Ami (a former professional and still occassional hair dresser) used scissors and clippers to even out his hair, while I was careful to protect the inscision sites from stray hairs. The result is a very handsome Steve. (Cooper says his Daddy resembles Andy now. Andy has offered his services for maintaining the look. Wes, who keeps his head bald and shiny, can also provide assistance.)

His head pain is changing. The constant ache at the back remains, plus his scalp seems to be waking up, post biopsy. He has more sensation, and therefore more pain, at the incision sites and the halo sites. His vision is getting better. Today he is walking without assistance for the first time since Thursday. The double vision is still there, but it lessens a bit each day. We just don't know which symptoms are temporary, as a result of the biopsy, and which are related to tumor and swelling.

Ami stayed another night to help us settle in, run more errands, clean, move food to the new fridge and freezer, give us lots of hugs and take care of us all. Everyone needs an Aunt Ami.

Really cool

Yesterday's drive home from Houston went by with lightening speed -- partly because I drove a bit faster than I should have, partly because it was a clear, sunny day (no dark fog like on the drive down there) and partly because of Jayshree's company. If you know Jayshree, you know what I'm talking about. She has an infectious cheerfulness and ability to talk about anything.

So in no time, it seemed, we pulled up in front of the house. Steve and I had to compose ourselves for a minute. Being home, about to see the kids for the first time since the surgery and results, made the reality that much more real. With some assistance, Steve made it inside and rested.

I eventually opened the garage door and notice our refrigerator was standing where some shelving usually stands. Of course, then I had to investigate the kitchen, where I discovered a new refrigerator with a single note on the front -- a list of Dallas Morning News family members who pooled their resources to buy us the nicest new side-by-side refrigerator.

Apparently Aunt Ami, when asked, had mentioned to Will that we could use a temporary freezer for the garage, to store all the wonderful meals we've received and stock up on the superfoods Steve needs to fight the tumor. Within a few hours, Will, Sharon and Sarah had received enough contributions to buy us a second fridge.

So now we're able to stock up on all the goodies Steve requires (phytonutrients are the tumor's enemy) and shop less often -- we'll have room for so much more. And I can freeze some of the dinners that are delivered for "rainy days."

Steve and I are continually amazed by all the blessings coming our way.

Quickly

We arrived home safely, and Steve is still improving. I expect to have the energy and time tomorrow to offer full details.

Quiet day

Steve was discharged this morning, and we've been spending the day in our room at the adjacent hotel.

Symptom update:

• His sense of taste is improving. He's better able to distinguish salty, tangy and sweet foods.
• His double vision is slightly improving.
• He's still unsteady on his feet, which we attribute to his vision difficulties.
• His head pain is at about a 3 on the 10-point scale.

Family and friends update:

• Jim and Betty helped us settle in the room, shopped for plenty of fresh produce and prepared foods for our lunch and journey home tomorrow, kept us company and then flew home. Betty bought Steve an M.D. Anderson ballcap for his head (he can't wash his hair until next Friday!) and us brain cancer awareness bracelets. The official brain cancer awareness color is, appropriately, gray.
• Brother Jim spent the night with Steve again, allowing me to sleep in a real bed, and helped us in the hotel this afternoon.
• Damm family friend Rob Cook surprised us with a visit last night. His father, Charles Cook, was a beloved minister and the man who married Steve and me in 1994. Rob shared some great stories about Steve from high school and youth group days. He's now a general surgeon in The Woodlands and one of many trusted resources we've consulted through this process.
• Cooper and Katie have had an eventful weekend. Yesterday Cooper enjoyed a playdate with Dylan and an impromptu sleepover with Cade. Today they both bounced around at Connor's birthday party. (Thanks to Byron for shopping for the party gift!) Sharon and Sarah have been spoiling Cooper and Katie tonight. Sharon and Sarah arrived with dinner and gifts and let Ami have a few hours on her own.
• We had hoped to visit with both Jayshree and Swati today at the hotel, but I canceled their visits. Steve and I are both exhausted and wanted a few hours on our own before returning home. I think I've run out of adrenaline or whatever has been propelling me the past few days. We took a long nap and ordered room service for dinner. We're keeping a close watch on the South Carolina primary (Nevada just isn't that exciting) and will watch a movie soon.

We are thankful for Steve's steady improvement, for the help you all are providing and for constant prayers, good wishes and the potential resources that continue to fill our in-boxes.

Preliminary results

Dr. L stopped by this morning to check on Steve, discuss next steps and tell him the preliminary diagnosis.

The pathologists believe the lesion is an astrocytoma, the kind of tumor we discussed last week. They believe it is a grade 3 or 4 tumor (with 4 being the most aggressive). We will learn the definitive results when we return for appointments next Friday.

In general, grade 3 is treated with six weeks of radiation therapy followed by chemotherapy. Grade 4 is treated with radiation and chemo concurrently.

Steve's body is still reacting to the biopsy. The left side of his face is almost completely back to normal. He has experienced numbness on the right side of his face. He has lost the ability to taste well -- he can't really distinguish flavors. (His sense of smell doesn't seem affected, though.) Dr. L strongly suspects that all the pain Steve experienced yesterday during biopsy was related to swelling and irritation around the fifth cranial nerve, which might explain at least the numbness he's having now on his right cheek.

His vision is still double, but wearing the patch has helped his orientation some. (And it gives him a good excuse to say "Arg!" frequently.) His head aches, and not just in the lower back of his head as before. There are those healing holes from the biopsy plus wounds from where the halo was screwed into his head.

He was removed from most of the lines and monitors this morning, sat upright in a chair for a while and walked around the nurse's station with help. He relished sitting in the chair, taking pressure off the back of his head.

The current plan is for Steve to stay another night on the neuro floor. If he's doing well tomorrow, he'll be discharged. We'll stay a night at the hotel attached to M.D. Anderson, allowing him to rest, then drive back to Dallas Sunday morning. Jayshree will drive with us and will fly back to Houston that night.

Then, we'll return to Houston Thursday night and meet with doctors Friday morning -- follow up and suture removal with Dr. L, treatment plan with Dr. C and a visit with a radiation oncologist. We hope to be back home Friday night.

Radiation will need to start as soon as Steve's sutures are healed.

We are all struggling with the news. When you look at Steve, you just can't believe that there is an awful tumor growing in his brain stem. With the help of the steroids, he has been working, taking care of and playing with Cooper and Katie, washing dishes, walking Margie. We are greatly encouraged by all of that, by his excellent lifestyle and health (tumor notwithstanding), by his inspiring attitude and outlook, by the resources we've had available, by our faith, by your faith, by the stories of beating the odds and by news of miracles.

Even though we're a few hours from home, we've never felt alone, enjoying the company of Jim, Betty and Jim, Shauna, Swati and the nice people we've met along the way.

In review:
1. Steve is feeling relatively well considering everything he endured yesterday and the news he received today.
2. Pathology says the cells look like an astrocytoma, either grade 3 or 4.
3. Steve should be discharged Saturday. We would drive home Sunday.
4. We'll return in a week for follow up, official diagnosis and treatment plan.

In recovery

Steve is resting after his long ordeal. He's in room P803 in a special neuro unit that is a step down from ICU.

It seems as if all of his motor skills and functions are intact. There is significantly more drooping on the left side of his face. I'm not sure if that's permanent or temporary. It's certainly an insignificant side effect. His double vision is significantly worse. He's asked for a patch to make having his eyes open more tolerable.

The procedure was the longest biopsy Dr. L has ever done, he said. Once again, Steve is showing us how unique he is.

Everything began well. They entered his skull from the back right as expected. The wire was going in and was about 15 mm from the lesion when Steve began screaming in pain, saying that he felt something in his head. (He was sedated but not completely under.) Dr. L said that has never happened to him in thousands of biopsies. The brain itself has no pain receptors.

So, they backed out. They studied the MRI scans. They saw nothing that was blocking the path -- no blood vessels, no membrane, no nerves. They tried again. He cried out at the exact same spot. They made a different incision site in the same area and followed the same trajectory. He experienced the same pain.

They stopped altogether and sedated him more. They took him back to imaging for another MRI. They wanted to be sure that he hadn't moved within the halo or that they hadn't missed something. They found nothing remarkable on the MRI.

They returned to the OR and worked on a different trajectory. They considered coming in from the front, as we'd discussed last week, but the doctors couldn't get a good path. They instead decided on the back left as an entry point.

That was the way to go. They found a pain-free path and removed three tissue samples.

The whole experience lasted about five hours.

Because of the multiple incisions and complications, they'll probably keep him for two days instead of the standard one.

Steve is eating dinner now -- his first meal since last night. His dad and I are in his room. Betty and Jim have left for dinner. We're taking shifts so he's never alone.

I am relieved beyond description that he came out of the biopsy in such good shape. I am broken hearted that he experienced such excruciating pain. I am further convinced, though I didn't need convincing, that I am married to the bravest, strongest, most amazing man.

Surgery is over, no real results yet

The rounding nurse just told us that the biopsy itself is over. They are closing the entry point, removing drapes, waking him up from the partial sedation. Dr. L will help Steve get settled in ICU and then visit with us.

Still waiting 2

It's been more than an hour since the nurse's rounds. We still haven't heard from Dr. L. Can you tell that my anxiety level is rising? We're taking lots of deep breaths and saying lots of prayers.

Still waiting

A different OR nurse is making her rounds. She reports that Steve is still in the OR and is doing well. She can't predict how much longer he'll be in surgery or tell us how many tissue samples have been removed.

New time

An OR nurse just visited with me. The surgery didn't actually begin until 9:10 a.m. When the nurse was making rounds at 9:45, there was still no tissue removed.

We don't expect to hear anything until 11:50 or noon.

In the OR

Dr. L's nurse just stopped by. She said that Steve did really well with the halo and MRI. He was wheeled into the OR about 15 minutes ago. The procedure will take about two and a half hours.

In the waiting room

I had hoped to spend more time with Steve this morning, but I've already been dismissed. When I left, Dr. L was preparing to fit the halo. Nurses will make rounds about every two hours but probably won't provide much information. Dr. L will visit with us (me, Jim, Betty and Jim) when Steve's out of the procedure.

I just spoke with Ami, Cooper and Katie, who all sound cheerful this morning. Ami drove in from Austin late last night. I left before she arrived, so Julie came over to help me pack and stay with the kids.

Liz was a great driving partner last night/this morning, taking the wheel for more than half the trip. We just couldn't do this without all of you!

There are public computers in the waiting area, so I can type more quickly than with the Blackberry. I'll update as I have information.

In pre-op

Steve is in a gown, lying in a hospital bed, waiting for the next set of instructions. He's telling me funny stories and making me laugh.

I'm using a Blackberry for blogging, so posts may be brief today. My sleepy fingers are slow!

Biopsy tomorrow

The MRI today showed that the lesion has grown about 2 mm since the last MRI from Dec. 22. Because the lesion has grown (and because of Steve's worsening vision), Dr. L suggested a biopsy for tomorrow.

We had planned to fly home this afternoon and return, if necessary, next week. Instead, Steve stayed at M.D. Anderson for lab work and an appointment with the anesthesiology department. Jim was with us, so he stayed with Steve, made sure they were in the right place at the right time, took notes, etc. I took a cab to the airport, changed my flight to the next one available and flew home.

I'm home with Cooper and Katie now. I'll get them ready for bed, pack for the next few days and drive to Houston tonight with Liz's help. Ami is driving back from Austin tonight to take over here again.

Steve will check in for surgery by 5:30 a.m. tomorrow. He will be sedated and fit with a halo that will keep his head stable. They'll give him more anesthesia, tighten the halo some more and send him for an MRI. The MRI will provide precise X- and Y-coordinates of the lesion. Those coordinates will be used to guide the wire and needle that will extract a tissue sample of the lesion.

A pathologist will be available to provide a quick reading of the tissue. Exact pathology results should be ready by next Friday, when we'll return for a follow-up appointment, including suture removal.

Tomorrow's procedure should be complete by noon or 1 p.m. Steve will be admitted to ICU and spend the night for observation. If there are no complications, he would be released sometime Friday. We will probably stay in Houston for a day or two after to make sure he's comfortable before the drive home.

I have a few of requests for you all.
1. If you have time, please leave a comment here for Steve or send an e-mail to stephen.damm@gmail.com. He already feels so much love and encouragement from you all -- I think an extra note right now would be even more meaningful.
2. Please pray for Steve, his doctors and his family, especially tomorrow morning.
3. Continue to think positively!

MRI is done

Steve spent about 40 minutes in the MRI machine. He reports that he was thinking lots of positive lesion-shrinking thoughts during the scan.

We're headed back to the main M.D. Anderson building to meet Jim for lunch. We'll meet with Dr. L, the neurosurgeon, at 12:45 p.m.

I'm not sure when I'll be able to update again. I got lucky this morning -- the MRI center has a couple of public computers. I may not post again until we get home tonight.

Keep all the good wishes and prayers coming!

Wednesday's plan

Steve and I are flying Continental from Love Field early Wednesday morning. (Our sweet pilot helper has an appointment Wednesday evening in Houston, so we're going to "rough it" by flying commercial.)

His MRI is at 10 a.m. at M.D. Anderson. We meet with the neurosurgeon at 12:45 p.m. We presume that the MRI will have been read by then, and we'll learn if the lesion has gotten smaller and then discuss the next steps. We plan to fly out of Houston at 4 p.m.

Betty is spending the night with us tonight and will help Cooper get ready for school in the morning and will take care of Katie during the day.

Steve is enjoying being back at work -- helping to solve problems and keeping his mind focused on health-care issues that aren't his own. (Don't worry -- he's not driving. He has lots of chauffeurs!)

Holding steady

Since we've been home from Houston, Steve's symptoms have been mostly steady. He's walking well, talking well and eating well. Today I noticed that his gait is a little unsteady, but it's minor so far. His headache pain, with Tylenol, is at a 1 or 2.

His vision is worsening. The right-side peripheral double vision is much worse, and he's having trouble seeing clearly at a distance, even with his glasses. The distance problem is probably because of the Decadron, which can change the shape of his lenses.

We've been enjoying the weekend. Matthew, our longtime friend from Lubbock days, is in town from Florida. He accompanied Cooper and Steve on a Cub Scout outing to the KERA studios yesterday. He also went with the whole family to see the new VeggieTales movie, has been wrestling Cooper, playing with Katie and helping with guided reading and assorted chores.

You all continue to make our lives easier with meals, cards, calls, prayers and visits. Thank you!

Home safe

Will we ever be able to fly commercial again? Sally really spoiled us! Sanjay had us at the Sugar Land airport by 3:45, we were in the air before 4 and landed at Addison at 5:15. We were home in time for dinner, baths and bedtime stories with the kids.

M.D. Anderson, Day 2

We're back at Jayshree & Sanjay's house after the morning at M.D. Anderson.

Dr. L, like everyone else, isn't 100% convinced that Steve's lesion is a tumor. Some images look like a tumor. Others don't. With contrast media, the lesion lights up in a manner similar to a tumor. But the pons itself (the area of the brain stem that the lesion has invaded) isn't swollen, as it often is with a tumor. The spectroscopy's data indicates a tumor, but that deep area of the brain is hard to read, so that data isn't 100% accurate.

Dr. L's recommendation is to repeat a head MRI next Wednesday. If the MRI shows that the lesion has decreased in size -- because of the Decadron or some other reason -- then there will be no biopsy. If the lesion is smaller, that will indicate it's not a tumor. If the MRI shows that the lesion has remained the same or gotten larger (compared with the Dec. 22 MRI), a biopsy would be scheduled for Jan. 22.

He reviewed the risks of the biopsy. The pons is a very small area of the brain, but it is responsible for a large number of bodily functions. It contains pathways for motor skills, sensory functions and breathing. When the needle goes in to retrieve a sample of the lesion's tissue, there's a chance it will also remove healthy tissue. There is a five percent chance of a small hemorrhage and a two percent chance of a large hemorrhage.

He says there are two pathways to consider -- from the front top of the head or from the back. The back is somewhat less comfortable for the surgeon but a more direct route. It seems to be the route Dr. L prefers right now.

Still, we don't have to decide that right now. We're constantly reminding ourselves, often with the help of so many of you, that we need to take this one step at a time. The next step is the repeat MRI.

Sally will fly us home this afternoon, and we'll spend the next few days enjoying the company of Cooper and Katie and our everyday lives. Thankfully the Decadron has kept most of Steve's symptoms at bay, so he's functioning well. He's continuing to experience double vision on the right side of his face because his left eye isn't fully able to move to the far right (a sixth nerve condition). His headache is still there, though it's back to its manageable level.

Recap:
1. The lesion is still officially a mystery.
2. We return to Houston Jan. 16 for an MRI at M.D. Anderson.
3. The results of the MRI will determine the necessity of a biopsy.

M.D. Anderson, Day 1

Today's visit with the neuro-oncologist offered us some hope.

The oncologist, Dr. C, says that based on his review of all the records and films, he thinks Steve's lesion is mostly likely a glioma (a general term for a brain tumor that forms from brain tissue). Lymphoma, sarcoidosis, a viral infection and demylination are much less likely.

Dr. C suspects that the tumor is an anaplastic astrocytoma. Such tumors are graded low grade, mid grade and high grade. He believes that Steve's is a mid grade, which means it is malignant but not as bad as a high grade.

Such a tumor is typically treated with radiation therapy for five days a week for five or six weeks. That is followed with Temodar, an oral chemotherapy, which Dr. C says is relatively easy on the body.

Treatment depends on a tissue sample, which requires a biopsy. Dr. C says we can afford to wait two or three weeks for a biopsy. We meet tomorrow morning with an M.D. Anderson neurosurgeon, Dr. L. He is one of the specialists in stereotactic biopsies of the brain.

If we choose to do the biopsy at M.D. Anderson, we would most likely return in a week or two for the procedure. After hospitalization, we'd return home. Then we'd come back to Houston in two or three weeks to learn results and discuss the treatment plan.

Most likely the treatments would be administered in Dallas. There are some tumors that respond well to proton therapy, which is done at M.D. Anderson, but Dr. C doubts Steve has that kind of tumor.

Gamma knife, a concentrated form of radiation, is a possibility we had been hoping for, but Dr. C says it won't work on Steve's tumor. The lesion is already too large.

The experience was smooth. We had been warned that the complex is huge, but it was easy to navigate, and the Brain and Spine Center staff was efficient and friendly. We loved meeting Shauna and Marie, who had been corresponding with us for weeks. Marie is an RN and the patient coordinator. Shauna is the pharmacy manager for the center and is one of Liz's best friends. Isn't it amazing that we have had access to countless resources? We are certainly blessed to have had in place so many remarkable people to help, from the very beginning of this ordeal.

After the appointment this morning, Jim took us to lunch and returned us to Jayshree and Sanjay's house. Steve is now napping, and I need to get some work done.

Recap:
1. The lesion is most likely a brain tumor called an anaplastic astrocytoma.
2. The next step is a biopsy, which we could do here or in Dallas. We meet with an M.D. Anderson surgeon tomorrow.
3. The tissue sample from the biopsy would determine the course of treatment, which will most likely be a combination of radiation and chemotherapy.

In Houston

Layne, Sally & Steve

Me, Sally & Steve

We arrived in the Houston area tonight courtesy of Layne's mom, Sally. She's a private pilot who lives in Sugar Land. She flew to Dallas this morning, spent the day with her grandkids and flew us here this evening. What a fun way to start our adventure! Steve sat in the co-pilot's seat while Sally expertly piloted us, even through some cloudy, rainy spots.

Jim (Steve's brother, who also lives in the Houston area) met us at the Sugar Land airport, took us to dinner and delivered us to Jayshree and Sanjay's house in Houston. Jayshree is one of my dear friends from high school and was in our wedding. She'll drive us to M.D. Anderson in the morning, where Jim will meet us for Steve's first appointment.

Tomorrow we meet with a neuro-oncologist. Wednesday we meet with a neurosurgeon.

Today we met with Dr. D, the first neurosurgeon we consulted. We were looking for a second opinion on waiting for a biopsy. Dr. D explained that the risks of the biopsy are great. (The needle is inserted somewhere at the top of the head and is then guided deep into the brain. Removing a tissue sample in such a remote area is doable but dangerous.) There's a chance that an MRI in three weeks will show the lesion is smaller. If so, that indicates it's not a tumor. And by waiting, Steve possibly avoids the biopsy altogether.

If it is a tumor, waiting a few weeks won't make much of a difference, Dr. D says, because there aren't many treatment options for a glioma in the brain stem. It was brutal news, and I think we're both still in shock.

We are now even more anxious of the oncology appointment Tuesday. We're full of hope that if the tumor is a lesion, M.D. Anderson will have some possible options for treatment.

Aunt Ami is back at the house, taking wonderful care of Cooper and Katie.

Overwhelmed, but in a good way

The past few weeks have been more active than usual around the house. So many helpful friends and family members coming and going -- delivering food and care packages, walking Margie, taking Cooper and Katie for play dates, stopping by for random chores and moral support. All of that activity has brought tremendous joy amid such uncertainty.

Still, nothing prepared Steve and I for the bustle of activity outside our house this afternoon.

Our front yard and sidewalk were suddenly overflowing with friends and family, representing a huge group of you who donated money for Steve's care. They presented us with an oversized check (think Publishers Clearing House) of a most generous, unbelievable amount written to "The Damm Family" for "whatever you wish" from "all of the elves."

It felt like a made-for-TV movie or a Hallmark commercial, but we certainly weren't as articulate as a scripted production. I think I managed a "thank you" for both Steve, who was overcome with emotion, and me.

The scene was just so beautiful. Children -- our own and so many others we love -- were running and playing up and down our end of the block (it's as if someone ordered pleasant weather for the afternoon). Clusters of friends offered the best hugs, continuing words of encouragement and endless offers of help. We felt completely enveloped in love and compassion. As Julie wrote me a few days ago, "We love you guys and if warm thoughts and prayers alone would take care of this, Steve would be better already!"

I can't imagine a better send-off before our journey to Houston, which begins tomorrow night. The money, of course, is appreciated beyond description (and we promise to spend it judiciously). The symbolism behind the gift is really the greatest gift -- the significant reminder that we are part of a community that cares beyond measures and that is so willing to make sacrifices to help others.

As I re-read the list of donors, I am reminded about what makes each one of you so special to us. Our family is indescribably honored and blessed to be part of your community. "Thank you" doesn't seem to be enough. So, in addition to our thanks, let's count on us sharing good news about Steve as soon as possible.

From this morning

Steve's symptoms are improving after two doses of the steroid. We're encouraged that he'll at least be able to get through the weekend comfortably before seeing additional doctors next week.

Edema

Steve's symptoms have been accelerating since he returned home. We think the increase is from the edema (swelling) around the lesion. Each day he is able to do less with his left arm and hand, and his speech is markedly worse. Last night he began a new course of steroids -- oral Decadron. We are so hopeful that his symptoms will begin to respond right away.

The four of us are having a family portrait taken this morning at the photo studio we use for the kids' annual birthday photos. Bob, the photographer, has known us since Cooper was 3 months old. We've never attempted a group photo with Bob -- we just rely on the church directory photo sessions for those, and the results have been mixed. In the last one, Katie was just less than a year old. We each are looking in a different direction. Some of us struggled with a genuine smile. There are some hair issues. Today should yield better results!

I am behind on all the thank-yous, and good gracious there are a lot of them. I'll work on those later today, I hope. You all are an inspirational group.

More opinions

Steve and I aren't comfortable waiting four weeks to be seen again. His symptoms are growing. The difficulty swallowing and slurred speech are back, his gait is a bit unbalanced, his left arm is weakening. He couldn't finish giving the kids a bath tonight -- he has trouble reaching and grabbing.

We have an appointment Monday afternoon with the Presby-Dallas neurosurgeon we visited the day after the first MRI reading. We also have an appointment Tuesday morning at M.D. Anderson in Houston.

We have loved being home again. Cooper started assembling his new 934-piece Lego Harry Potter Hogwarts set. He beat his Daddy in a game of Harry Potter Scene It. Katie has crafted beautiful creations from Play-Doh and modeled her pink princess costume. We've all been reading books together, eating meals together, playing with Margie together. It's oddly normal considering everything else we're worried about.