Home again

We're home!

We never did see Dr. M, the neuro-oncologist. She had patients with more urgent needs today. So, Steve was discharged and was told to expect a call from her in the next two days.

We are frustrated that Steve stayed in the hospital for three days to wait for a doctor who never came. But we are thankful to be home now.

Discharge instructions include an MRI in three weeks and an appointment with the neurosurgeon in four weeks. We're not very comfortable with that lag in time and will try to sort out the reasons why on Wednesday when the neurosurgeon's office is open again. Of course, if Steve's symptoms worsen or he develops new symptoms, we'll seek treatment immediately. And we're still considering other opinions.

Happy new year to you all!

Twists and turns

The less complicated news first:
Andy, Julie and Adam brought Cooper and Katie to Zale for a fun visit this morning. Cooper and Katie loved "bed rides" (at the direction of our friend David who had been visiting when they arrived). Steve raised the bed as high as it could go then tilted the head then the feet up. The kids also watched part of the new Veggie Tales DVD that Mike and Berta delivered yesterday.

Will, Holly and Conor arrived with boxes of Sal's pizza, enough to feed our hungry crowd. We had a great time in the nearby living area, 10 of us taking over, pushing tables and chairs around to suit our needs, eating, laughing and playing.

The more complicated news:
We think Steve will be released tomorrow.

Dr. M, the neurosurgeon who we first saw at UT-SW, has told Dr. W, the neurosurgeon who can do stereotactic biopsies, not to do the biopsy this week.

Dr. M isn't convinced that Steve has a high-grade glioma despite the MR spectroscopy results. (A neuro resident accidentally told us today that the MR spec results indicate -- though don't prove -- a high-grade glioma. We hadn't heard the "high-grade" description before this morning.) He's not convinced because of Steve's paucity of symptoms. He just doesn't look or function like a patient with a high-grade glioma in his brain stem.

Instead, he wants Steve to have a follow-up MRI in two or three weeks, followed by a biopsy if necessary.

Are you confused? We are a bit puzzled. I think it would help if we were actually talking with Dr. M, instead of hearing the information from Dr. C (the attending neurologist). Dr. M apparently is still hopeful that Steve's lesion is demylination. But even if it's not, Dr. M thinks there's time to be conservative -- to wait on all the spinal fluid studies to come back, to watch for signs of the tumor responding to the steroid treatment -- before exposing Steve the risks associated with a stereotactic biopsy of the brain stem.

The plan now is to continue to wait for the neuro-oncologist to come by for an initial consultation. She should be here tomorrow (we're guessing she won't be here this late on a Sunday). Then Steve would be released to go home.

Recap:
1. The MR spectroscopy indicates, but doesn't prove, a high-grade glioma.
2. Dr. M has called off this week's biopsy.
3. The neuro-oncologist is expected to stop by tomorrow to begin discussing possible treatment plans.
4. We may go home tomorrow. (We're learning that nothing is definite, though.)
5. Follow-up appointments will include another MRI, consultation with Dr. W (neuro-surgeon for biopsy) and follow-up Dr. M (original neuro-surgeon).
6. We're conflicted with news that the tumor is a suspected high-grade glioma (very gloomy finding) and that Dr. M, who is highly regarded and backed by years of experience, thinks it's not a glioma at all.

Great spirits

Steve's temporary home was a joy-filled place to be the past 32 hours or so. He is handling Friday's news remarkably well, no doubt bolstered by the support, prayers and good wishes from you all. Just about every nurse and tech remarks on Steve's awesome support network, and they witness only a fraction of your love.

Thank you to:

• Jim & Betty's pastor, David, and his wife, who visited Friday.
• Mary MT, who delivered a home-cooked dinner and served Steve with china, linen and silver.
• Jim & Betty for sitting with Steve while I spent time with Katie & Cooper.
• Will, who spent the night here in my absence and kept Steve laughing until 3 a.m.
• Lori, who arrived in time for Will to go home, took charge of notes and questions, room changes and lunch.
• Meghan & Jeff, who spent Saturday morning with Steve and helped with the room move.
• Al & Nancy, who visited Saturday.
• Debbie, our music minister, who visited Saturday and led a beautiful prayer.
• Uncle Jim, who flew in from Houston for the third time in three weeks, helped Jim with a project at our house and connected our little DVD player to the TV in Steve's room. (And thanks to Layne for the cables.)
• Mel & Greg, who were here twice in two days, bringing our nieces Brooke & Molli for a fun Saturday afternoon/evening visit, more art for Steve's growing gallery of cheer and a new backgammon set.
• Mike & Berta, who visited Saturday afternoon, bearing a huge basket designed to make us feel more at home and leading us in prayer.
• Wendy, who delivered homemade comfort food, including a pecan pie, Steve's favorite dessert.
• Everyone who has called, sent notes or shared stories of great hope and miracles.

On the homefront:

• Andy, Julie & Adam, who have grown from a family of three to a family of five for the weekend, taking care of Katie & Cooper and all other kinds of household needs.
• Amy & Justin, who fulfilled Cooper's request for a burger and chocolate shake Friday night, helped me pack for these next few days, washed clothes, walked Margie and kept me company.
• Meghan & Denna, who gave up their Friday night to help me prepare for the week.
• Justin H, who continues to take care of Margie.
• Allison, who filled my car with gas and ran errands Friday night.

New room

Lori decided that Steve's room wasn't nice enough for his extended stay, so she and Meghan walked around the fifth floor and took note of the nicest available rooms. Lori asked the nurse if he could switch, and just a little bit later it was done.

So now we're in Room 513, which is a little bigger and has carpet.

News

I've dreaded typing this post. Writing this for you all to read makes it too real.

Dr. C, her residents and an RN came to the room this afternoon to tell us that the MR spectroscopy results show that the lesion is a tumor.

The neuro team wants to keep Steve admitted for now.

We expect the neuro-oncologist to come by sometime Saturday, Sunday or Monday. She will have studied his case and will start laying out a plan as best she can.

The neurosurgeon who specializes in deep brain cases has reviewed Steve's films and says he can biopsy the area (tentatively scheduled for Jan. 2 or 3). Getting a tissue sample will better define what kind of tumor it is and help determine the best course of treatment.

In general, the treatment would be radiation and chemotherapy. I don't know more details. And the neuro-oncologist requested that we not use the Internet to get more information. I am going to do my best to follow that advice. We are focused now on fighting this awful thing and getting Steve back to 100% health. In my mind, there is no other option, and I'm not interested in reading the statistics. I welcome the success stories and positive outcomes.

We have asked Ray, one of Steve's co-workers, to pull together information on the centers that can best treat this tumor. We may stay here, of course, but we don't want to miss the best option.

Steve's parents are with him now. I left this afternoon to pick up Cooper & Katie, bring them home and have a somewhat routine night. Jim & Betty will stay with him until Will arrives after his late shift at the News. Will will stay until morning, when more reinforcements arrive.

Cooper & Katie will be with dear friends this weekend and back with Jim & Betty next week.

When Cooper learned that his Daddy wouldn't be coming home from the hospital today, he cried and said, "It's not fair." He's right.

Waiting

Steve is feeling great again today. He just returned from a solo walk around the fifth floor, and he was so speedy! His head hurts, but the pain is back at its "normal" level, which we assume will be there until his little pontine "friend" is taken care of.

We are waiting for someone official -- a resident or attending or someone -- to stop by with a plan for today. Until then we'll try to relax and enjoy some quiet time.

Catching up

I've fallen behind on thanking all the people who have made this process so much easier. I'm sure this won't be an inclusive list -- so sorry! But know that we appreciate and value every call, note, visit, gift and prayer. There are countless offers of additional help out there, and while we hope we don't have the need for more help, we are indescribably comforted knowing we can rely on you all.


Jim, Betty & Uncle Jim: Most important, they have taken over care of Cooper & Katie. My job right now is to take care of Steve, and I couldn't do that if I were worried about our sweet babes. They've also delivered anything we ask for and anticipate what we don't think to ask for. And they're doing all this while also worried about their own sweet Steve.

Greg: At the direction of Mel, he surprised me yesterday with a midday food delivery and kept me company while Steve was at the imaging center.

Julie: She looked like Santa when she walked in with a bag of goodies -- two comfy pillows for Steve, photos and pictures for the wall at the foot of Steve's bed, a bag of treats, some work papers for me and prescriptions for my nagging upper respiratory illness. She also helped me stand in line with the kids to see Santa and helped pull together gifts on Christmas Eve. We can't forget Andy, who takes charge on garbage day, finds answers to questions quickly and helps in any other way he can.

Andy & Zita: They delivered a full dinner that Steve called "magical," a bag of surprises and cheerful drawings from their sweet girls. Their company was magical, too.

Will & Holly: They brought us dinner our first night home last week, brought extra gifts for the kids and helped us take our minds off everything for a bit. Will visited this week with extra jokes for Steve, who laughed harder than he'd laughed in at least a week, and a Starbucks for me.

Meghan & Denna: They apparently have cleaned the house in our absence and are taking care of Margie (our dog). Actually, all of Denna's family is helping with Margie, most notably our reliable sitter Justin.

Liz & Layne: Liz drove with us to the ER on Christmas morning, leaving her family behind to sit with me during the trying experience. Layne later joined us and helped us settle in at Zale. Layne stopped by yesterday on his way home from work and met some of Steve's closest co-workers.

Chidren's family: Lori, Ray, Wendy, Karen, Leti and more -- they all miss Steve around the office and have been great about stopping by, e-mailing and calling to check on him. They are a tremendous resource as we continue to navigate the medical field.

Kelly S: She adopted Cooper for most of the day Christmas Eve, allowing Steve to rest and Katie & I to get ready for Christmas.

Kerri: She delivered dinner and flowers and provided welcome company.

Bill & Kathy: They walked in just before Steve left for his scan yesterday and brought with them their characteristic aura of faith, peace and sincere concern.

The Walls family: They delivered treats before we left for church Christmas Eve. We can't wait to get home to see them and the rest of our amazing neighbors, who continue to remind us that we live in the best neighborhood and dispel the notion that new suburban neighborhoods are cold and impersonal.

Mystery neighbor: Someone left in our mailbox a Christmas ornament with a Damm family photo.

Mary S: Steve started to feel very ill during Christmas Eve services. I couldn't help him right away, though, because Cooper -- all 60 pounds of him -- had fallen asleep and was draped across me. Mary missed the candlelight part of the service to take care of Steve, and she, Kevin and Alex helped get us all to the car.

Flowers from: Children's ENT & audiology, DMN Editorial department, the Crumb family, the Tarun-Stogsdill family and Linda Swift

Test is done

Steve was wheeled away this afternoon for the MR spectroscopy and returned about 90 minutes later. He said he was in a vessel like an MRI but the sounds were completely different. He returned in great spirits and to a roomful of visitors.

We expect to leave tomorrow unless an early reading of the test indicates something that requires immediate attention.

Good morning

Steve is feeling so much better. He still has a headache, but the pain is much less. He's eating, walking around more, joking.

Dr. A, the resident who has been with us since the St. Paul ER experience on Christmas Day, was just here. He better explained the MR spectroscopy, which I'll try to do here.

The two-to-four-day wait is for scheduling. The test isn't done very often, and imaging has to pull in the appropriate personnel in the middle of the holiday week. The RN and I both politely urged Dr. A to call radiology to get the process moving.

For some context, an MRI offers a 3D image of the brain (or whatever body part is being scanned). An MRI can show you the structures inside -- bone, nerves, masses.

An MR spectroscopy looks at the chemical makeup of the brain. During the procedure, the imaging would focus specifically on the area around the lesion and inside the lesion. There are certain chemicals that are expected in an infectious area; other chemicals are expected in a tumor. The results of the spectroscopy will point them in a direction, not necessarily provide a definitive diagnosis.

Dr. A says when he looks at the MRI image and sees how well Steve is functioning (notwithstanding the awful rebound from the steroids), he thinks Steve has some kind of demyelination -- a condition in which nerves are damaged -- that is perhaps just a one-time condition. (If before we were rooting for lymphoma, we're now really rooting for a one-time condition!) And, like every other doctor, he acknowledges that it could be a tumor, perhaps one that is wrapping around the nerves but not damaging them. Again, tumors in adults in this area of the brain are extremely rare.

Dr. A and Dr. C both now have mentioned that a biopsy would be the next diagnostic tool if necessary -- after the spectroscopy results are in and all the studies are back from the spinal fluid tests. The hope is we don't have to get to a biopsy, that they're able to determine something before then.

Next steps:
1. Steve continues to regain strength at the hospital.
2. He'll undergo the MR spectroscopy whenever all the people and pieces fall into place.
3. We'll go home and wait for results from the spectroscopy and the spinal fluid studies. Those results will determine the necessity for a biopsy.

Settling in

Now it looks like Steve will be here a bit longer. The neurologists are ordering an MR spectroscopy of the brain. This sort of imaging can detect more precise cellular abnormalities than an MRI.

The resident said the testing would keep him here two, three or four days. I think I was so taken aback by that that I didn't think to ask if the length of time is for the actual testing or if it will take that long to get the test scheduled. I've searched online to learn more about the test and quizzed the RN, but neither method has given me the answer. So, if any of you out there have experience with MR spectroscopy, please let us know! In the meantime, I'll keep trying to decipher medical journal articles.

The nausea is still at bay, though he wasn't able to eat much for lunch. He's on a new pain medicine that makes him feel foggy but doesn't get rid of the pain, so he may request to get back on the old one that didn't have quite the fog effect but did dull the pain a little better.

Katie and Cooper are enjoying the company of Grandma and Papa and their new Christmas toys. Favorites include a whole litter of new Webkinz, a pink princess gown with matching conical, Little People airport, a new Leapster cartridge and a marble labyrinth.

Improving

Steve is feeling much better today. The anti-nausea medicine worked well, and he has been able to drink water and even eat some breakfast this morning. His head pain, which in the past few days was a 7 or 8 on a scale of 10, is back to its routine 2 to 4. He's sleeping now after a busy morning of exams, blood draws, vital checks, a walk around the fifth floor etc.

Dr. C's resident stopped by a couple of hours ago and said a repeat MRI doesn't seem necessary today. Because Steve responded well to the anti-nausea meds, they are less concerned that the lesion caused the nausea and vomiting. The resident thinks Steve could go home today. We're waiting for an official plan from Dr. C.

It's fitting that he's in Room 503 -- the room was donated by the late Arthur Andersen Co., Steve's former employer.

Back at Zale

Steve had a rough day and a half at home, and now we're back at Zale (Room 503).

He's had increased head pain, nausea and vomiting at home. Dr. C was on call this morning and advised us to come in. He had a CT scan of his head at the St. Paul emergency room. (It's part of the UT-SW system, and they were staffed well enough today to take care of a scan quickly. After a few hours in the ER, he was transferred to Zale in an ambulance.) The scan showed nothing different than what we knew was there.

His heart rate is low -- in the low 40s -- though I did see it spike to the 60s at one point. His blood pressure is high. They had him on oxygen at the ER. They have run EKGs and blood work.

It sounds like the best guess is he had a bad reaction coming off the steroids. He'll stay at least overnight at Zale. They're treating his symptoms -- nausea and pain.

I'll update more later with Christmas details. Please continue to pray for Steve, his family and his doctors. He particularly needs a renewal of emotional strength -- he's had such a rough couple of weeks and has done so well, but the process and uncertainty is wearing on him.

Going home

Dr. C, the lead neurologist, stopped by and told us we'd leave tomorrow, not today. Pulmonology has still not consulted, and she wanted to give them a chance to review the CT scan before he leaves. Clinically, though, she agreed there's no reason for him to stay. And if pulmonology wants to run more tests or procedures, they probably wouldn't do so until after Christmas on an outpatient basis. After more discussion, she decided Steve could leave today. I think she realized the emotional benefit of Steve being home.

While she was here, she reviewed the MR images from last night/this morning. Last night's RN wheeled him out about 10 p.m. last night for a brain and spine MRI, and he returned about 12:20 a.m. Dr. C found nothing obviously wrong on the spine MRI and no change in the lesion on the brain MRI. Neuroradiology will formally review the films.

Next steps as far as we know:
1. We wait for the discharge process to finish and we move out of 530.
2. We head home and watch closely for changes in symptoms or new symptoms.
3. We wait to hear if pulmonology wants Steve to return later this week for tests or procedures related to the opacity on his CT scan.
4. We wait to hear results from the studies of his spinal fluid.
5. We head back in a couple of weeks for another MRI.
6. We see Dr. M (the neurosurgeon) for a follow-up appointment in mid-January.

That's a lot of waiting! But they did prepare us for the fact that we would be leaving without answers.

We have been so thankful for the excellent care provided here on the fifth floor. Steve never failed to praise the nurses, techs, housekeepers, nutrition staff and doctors for their help. He was particularly effusive during the first 48 hours of steroid treatment. Sometimes people get mean or grouchy while on medication; Steve just gets nicer.

Social Saturday

There's little medical news to report from Room 530 today.

Steve received another blood thinner shot this morning and the fourth steroid dose from 4:30 to 5:30 p.m. We visited with the neurology resident and another neurologist who has been following the case and is filling in for Steve's lead doctor. We're still hopeful he'll be able to leave tomorrow, though he may return after Christmas for some outpatient tests or procedures.

We are certain we won't be leaving with answers, but the neurologists have assured us that they'll continue to investigate Steve's case until we have a diagnosis -- or they'll refer us to someone who can. The neurologist called him "an enigma."

The effects of the steroids on his mood and emotions have lessened dramatically. His headache is more painful now than when we first arrived Tuesday. And yet he just reported: "All things considered, I'm feeling much better tonight." Isn't that great?! This process is teaching us both to celebrate each little victory along the way.

This hospital is quiet on the weekends, but Steve's room was hopping. Visitors included Uncle Jim, who flew in this morning from Houston; Jeannie, representing the delightful Dewar family, with a beautiful ornament; Jennifer and Leti from work with flowers and a box of pastries; Jim, Betty, Cooper and Katie; Michael from D.C. with lunch; and Swati and her mom with homemade Indian food for dinner and more magazines. Yesterday Andy from church stopped by with muffins from Zita, one of the world's best bakers. And last night Layne brought pizza and magazines, called bingo numbers for a competitive game between Cooper and Steve and watched part of Water Boy with Steve. (I sure hope I'm not forgetting anyone -- every one of the visits, calls, notes and gifts have cheered us.)

Very best medicine

Snoring

Steve is napping for the second time today -- yay! His dad, Jim, who has been out of town for work this week, sat with him in cozy Room 530 this morning while I was at home and at Cooper's winter party.

Steve's loopiness (he says he feels like he's at happy hour) is slightly less loopy today. His head pain is worse, though, and radiating down his neck. We hope it's just the steroids causing the extra pain. This strong dose apparently can do strange things to the body.

He received a shot of blood thinner in his stomach. Doesn't that sound awful? He says it didn't hurt. The blood thinner is a precautionary measure against blood clots for patients who are spending a lot of time in bed.

Jim walked him around the floor this morning, and the two of us walked around again this afternoon. I'd like to get him out in the sunshine soon. We can open the window here a bit for fresh air. His view includes some parking garages, UT-SW's Seay building and stretches of North Dallas. Depending on the direction of the wind, we can see jets leaving or landing at Love Field.

Neurology has ordered an MRI of his spine. That should happen today. I don't know what they're looking for. We're still waiting for the pulmonology consult to address the small opacity from the CT scan.

Visitors today included Lori and Ray with chocolates, Sarah with lunch and Ami and Sasha on their way back to Austin. We apparently missed a visit from Chris, another fraternity brother from Michigan who now lives in Dallas (Steve was sleeping). Allison visited last night with yet another thoughtful care package. (I really need a separate post to fill you all in on the creative, helpful ideas that we've discovered from Steve's support network.)

The room is filling with flowers and plants. We need more shelving units to accommodate the growing floral and food deliveries (all so appreciated), linens, clothes and electronic devices.

Jim and Betty are bringing Cooper and Katie up for a visit tonight. (Pizza provided by the Smith family.) They are so looking forward to seeing their daddy!

Another possibility

The attending neurologist (who ordered the steroids) just came by while Steve was asleep. We stepped outside so she could review the current situation.

Steve is now completely under neurology (instead of neurosurgery, as there's no surgery case right now).

The CT scan did show two small areas, one that needs to be investigated, one of no concern, apparently. They're not worried about a small cyst they found in one of his kidneys. Neurology is consulting pulmonology on a 5-mm opacity in the upper quadrant of one of his lungs. (I didn't have my notebook, so I didn't write down which lung.)

Pulmonology may order additional tests while Steve is here. They'll be looking for something called sarcoidosis, which is inflammation of clusters of cells in various parts of the body -- most commonly lungs and lymph nodes. It less frequently affects other parts of the body, including the brain. It's often treatable with prednisone. As with MS, when I read about sarcoidosis online, it doesn't seem to match Steve, but I'm not a doctor! I'm pleased that they seem to be pursuing every significant clue that may solve the mystery of the angry invader.

Steve has had very little sleep since we arrived Tuesday morning, a problem exacerbated by the steroids. His speech is markedly more slurred, and he's repeating himself often. He's already a sweet, sensitive sort, and right now he is super emotional. I've let the neurologist and RN know, and they asked me to keep track of the symptoms.

Medical recap:
1. Neurology, not neurosurgery, is now the lead.
2. The CT scan indicated a small spot on his lung that may require further investigation.
3. The steroids seem to be affecting his behavior and mood -- not out of the ordinary from what I've gathered.

The rest of the day so far:
1. Our minister, Don, visited and brought a prayer shawl, rubbing cross and hand-folded origami peace swan.
2. Other visitors included Betty, bearing slippers and new PJs; Lori, with beautiful flowers; Wendy from Steve's work, with fun conversation; and David, one of Steve's fraternity brothers from Michigan who also works for Children's (and Scottish Rite) and has been a trusted resource during this process.
3. Katie performed in her preschool's Christmas musical this morning. She was so animated and happy.
4. Cooper was thrilled to come home from school to find Aunt Mel, Brooke & Molli visiting.
5. My dinner tonight will be delivered by Sharon. (Dinner at home will be delivered by Amy -- those bunco girls have been taking care of the Frisco branch of the Damm family all week.)

Extended engagement

Steve is going to settle in to Room 530 for a little while.

They're going to start treating him today (actually right now!) with a high dose of IV steroids (Solu-Medrol) to address the swelling in the pons. He needs one dose for five days, which keeps him here until Sunday. It takes about one hour for the 1-g dose to make its way into his bloodstream.

The steroid is often used to treat MS patients who are experiencing a flare-up. This doesn't mean he has MS, but I get the feeling they're treating him as if he does until they know otherwise.

From the little bit of reading I've done, he doesn't have the classic symptoms of MS, though the disease acts differently in each patient. Common symptoms are blurred vision, loss of muscle strength, numbness or tingling, difficulty with coordination -- none of which he has now, thank God. Other symptoms can include slurred speech and difficulty swallowing, but they are less common. (Of course, there's not much common about Steve.)

The lumbar puncture's early results -- what they could determine right away -- indicated no problems.

So, he'll get the steroids once a day until Sunday and hopefully go home that day. We'll be able to enjoy Christmas Eve and Christmas Day outside of the hospital. Then we'll wait to hear results from the other spinal fluid studies. And he'll go back to the neurosurgeon in mid-January for an office visit and repeat head MRI.

Recap:
1. He's staying here until Sunday to receive the IV steroids to help reduce the swelling, which may reduce the symptoms that started us on this journey in the first place.
2. We'll wait for the studies to come back over the next few weeks. The results may tell us what has caused the lesion or will rule out conditions and diseases.
3. He'll return to the neurosurgeon in mid-January for another head MRI and follow-up.

Other news:
1. Visitors and gift-bearers today included Mary from church and Karen, Ray and Leti from Steve's work.
2. Betty kept us company for a few hours and brought welcome treats.
3. Will, Conor & Holly will visit later tonight.
4. Thanks to Aunt Ami, Katie finally realized her dream of a peanut butter and jelly AND honey sandwich at lunch today.

Horizontal

Steve took the field vision test at Aston (a building connected via hallways and tunnels and ramps to all the other UT-SW-affiliated buildings) and was then wheeled back to Zale for the lumbar puncture.

The LP process was much smoother today. The X-ray helped the doctor (a different one than yesterday) find just the right spot, and they filled four tubes of cerebrospinal fluid. The fluid is clear and almost the same consistency as water.

He's trying right now to fall asleep, which he desperately needs. He must stay flat for at least two hours to help avoid an awful headache. (Poor guy certainly doesn't need another headache!)

We expect to hear later this afternoon if we're going home today.

Morning

Steve slept for maybe three and a half hours. He's exhausted, but his trademark Steve sense of humor is intact.

We've seen two neurosurgeon residents this morning. The senior resident told us that Steve's CT scan was clear -- good news, of course, though we were kind of hoping they'd find something that would indicate a treatable condition.