I'm so sorry that some of you are getting this without previous knowledge that anything has been going on. It's been a rough week, and I haven't yet contacted everyone I had planned on writing or calling.
Steve has had a constant headache at the back of his head for more than a month. He also has had trouble swallowing some foods and has developed some slurred speech. An MRI yesterday showed a 15 mm lesion on the right side of his brain stem, mostly in an area called the pons.
We spent today driving around the Dallas area, seeing doctors and seeking advice. We have some answers but not enough.
Here's some of what we do know:
1. The lesion, which some doctors are calling a tumor, is mostly round with a small handle.
2. It is in the part of the brain that controls the body's ability to speak and swallow.
3. There is swelling around the tumor. As one doctor said today, his brain is really angry that this foreign matter has invaded.
4. It is probable that the tumor can be biopsied using a stereotactic method, which I think means drilling a small hole in the skull, maneuvering to the area and taking a small tissue sample, all the while avoiding damage to the brain, nerves, etc.
5. It is unlikely and probably impossible that the tumor can be surgically removed because of its location in the brain. Treatment would be medical (chemo, radiation, steroids, etc.), not surgical.
Throughout the day we met with Steve's internal medicine doctor, the neurologist he recommended and a neurosurgeon recommended by more than one friend. Tomorrow we see another neurosurgeon, the best in Dallas, according to at least 10 people I spoke with or heard from through friends. Both neurosurgeons specialize in unusual cases, which is great for Steve, as his case is most unusual. Tumors almost never appear in the brain stems of adults. And they almost never appear in this position. Because it's not a textbook case, we have hope that it's not actually a malignant tumor.
So what else could it be? The surgeon today said it could be lymphoma, a much more treatable and sometimes curable disease. Actually, he said we should root for lymphoma. Because a glioma in the brain stem is really bad news. The chance of survival is horribly low. Or it could be some other unknown mass.
Here are our next steps.
1. We see the second neurosurgeon Thursday morning.
2. Steve will have a lumbar puncture (spinal tap) Thursday or Friday. In addition to basic vital information (red & white blood cell counts for example), they'll be looking for MS (very unlikely) and evidence of lymphoma.
3. We will decide which surgeon to work with, perhaps continuing to seek advice from other centers. (Dallas is apparently a good place to have a brain tumor, according to Rodger Jones, a brain tumor survivor and Dallas Morning News colleague. But we want to be sure we're getting the best care.)
We are holding up as well as we can, I think. Steve and I are overwhelmed by the support, prayers, love and advice that have flooded our in-boxes, phones and doorstep. In the midst of the most trying episode of our 13-plus years of marriage, we are constantly reminded of how blessed we are. We have already been served delicious dinners. Katie and Cooper have been cared for by the very best moms and dads. Not a single person has hesitated to help research the best options of care. There were at least four people calling the neurosurgeon on Steve's behalf today. And I know we'll never even realize all the prayer lists that already include Steve.
We sat down with Cooper tonight to tell him some basic facts. We told him that Steve is sick, that he will be seeing lots of doctors and that he may need to go the hospital. We don't want to give him more than that do deal with. He was quiet and cuddled with his Daddy for a few minutes. Katie is too young for such a conversation to have the same meaning. Our goal is to keep life as stable as possible for our sweet babies.
If you're wondering what you can do, I have a couple of requests. Please include Steve, his family and his doctors in your prayers and good thoughts. I know he's also appreciated the e-mails he's already received. His address is stephen.damm(at)gmail.com.