Thursday, January 31, 2008
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.
Wednesday, January 30, 2008
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.
Tuesday, January 29, 2008
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.
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!
Sunday, January 27, 2008
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:
I've always loved the song's message of hope and embrace it now more than ever.
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
Friday, January 25, 2008
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.
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.
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.
Wednesday, January 23, 2008
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.
Monday, January 21, 2008
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.
Sunday, January 20, 2008
Saturday, January 19, 2008
Steve was discharged this morning, and we've been spending the day in our room at the adjacent hotel.
- 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.
Friday, January 18, 2008
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.
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.
Thursday, January 17, 2008
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.
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.
Wednesday, January 16, 2008
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 firstname.lastname@example.org. 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!
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!
Tuesday, January 15, 2008
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!)
Sunday, January 13, 2008
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!
Wednesday, January 9, 2008
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.
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.
Tuesday, January 8, 2008
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.
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.
Monday, January 7, 2008
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.
Sunday, January 6, 2008
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.
Friday, January 4, 2008
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.
Wednesday, January 2, 2008
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.