Saturday, August 30, 2008
Good friend and neighbor Andy is driving him, and Jim and Betty will pick him up at 6 a.m., saving me from waking the kids up, piling them in the minivan and driving them in the dark.
We'll get the results from the study at the next pulmonology appointment, scheduled for Sept. 9.
If all goes well this week, we won't have a single medical appointment between Sept. 1 and Sept. 9 -- the longest stretch since all this began!
By the way, if you also read The Damm Spot, our "happy" family blog, you will notice a change. I've made the site password protected. If you would like access to that site, please e-mail me, and I'll add you to the permissions list.
Monday, August 25, 2008
On Friday night the four of us walked to and from Cooper's school for meet-the-teacher night. The total distance is about two-thirds of mile.
This morning we all walked Coop to school again for the first day of second grade.
Steve was just a little bit wobbly, but he kept a steady pace and did really well. It's the most physical activity he's had in a long while. Go, Steve, go!
Wednesday, August 20, 2008
We spent much more time than expected at the cancer center to get the good news. The MRI was at noon. We were scheduled to see Dr. M at 2:30 p.m. but didn't actually see her until 4:30. Thankfully we both had books to read and enjoy each other's company! (Cooper and Katie spent the afternoon with Grandma.)
In addition to the MRI news, we learned:
1. Steve can start Cycle 5 of chemotherapy next Monday. He'll remain at 200 mg of Temodar (down from 300 mg) and will continue taking Accutane.
2. He can try to drink liquids without thickener. He still has no gag reflex, but Dr. M and her staff agree that if he's careful and sits up straight while drinking, he should be able to avoid aspiration. If he starts coughing while drinking, he'll return to the thickener and straw. Tonight he drank regular ol' ice water out of a glass for the first time since January. "It was highly exciting," Steve reports.
3. Dr. M wants him to try to go back to 2 mg of steroid daily. He's been at 3 mg for a couple of weeks after a failed attempt at 1.5 and then 2.
4. He's going to add a multivitamin daily with the hopes of increasing calcium (for weakening bones) and Vitamins C and E (to stave off cataract growth).
Thank you for continuing to check on Steve, for praying for him and sending us good thoughts!
Tuesday, August 19, 2008
No matter how much I try to avoid worry, I can't help but be nervous before these scans. I just remind myself that we don't have any reason to believe there is any growth or new tumor activity. Steve is doing well -- his energy level is good, he's relatively stable when walking (even with his distorted prism vision), his headaches have disappeared again. And he's not nervous at all about tomorrow's appointment.
Sunday, August 17, 2008
Hi, everybody -- just checking in ahead of the race for Steve. There are only four months remaining for those of us planning to run. With the weather hopefully cooling off, it's time to talk about training.
The first thing to decide is which race you will run. There is a full marathon (26.2 miles), a half marathon (13.1), and a relay, which would be 26.2 miles divided among five runners. We are building at least one relay team, so if you're interested in joining please e-mail email@example.com.
If you're running the full or half marathon be sure to register as quickly as possible because this event WILL sell out.
Now for a little housekeeping:
1. We are still trying to come up with a name for our team. Please e-mail your ideas. Steve will be choosing his favorite. Once a name has been determined, we will order team shirts.
2. In order to place the order for team shirts, we need to have an idea about how many shirts need to be ordered. If you are planning to run, please send an e-mail with your name and size. We will let you know how much each shirt will cost.
While you're training, be sure to stretch, drink plenty of water and increase your mileage gradually. If you would like to read more about training you can visit:
Be strong, be safe,
Saturday, August 16, 2008
Wednesday, August 13, 2008
Cause of double vision
We've actually known this, but it's good to review. Steve's double vision is caused by a problem with his sixth cranial nerve. This nerve starts in the brain stem, where the Damm Spot lives. The nerve has been damaged by the Damm Spot and/or related swelling. The sixth cranial nerve's only job is to control the eye's ability to move back and forth. It's not working well on Steve's right eye. So, his left eye can move side to side in a normal fashion. But his right doesn't track the same. So he sees two of everything. He doesn't wear a patch over the right eye. He just tries to focus on the image he sees through the left eye and tries to ignore the right.
Friday, August 8, 2008
When I put Katie to bed tonight, she cried, "But I want to give Daddy a hug and a kiss." Blowing him a kiss across the family room wasn't sufficient.
Steve and Katie, November 2007, Log Cabin Village
Thursday, August 7, 2008
Wednesday, August 6, 2008
Like everyone else, he's eager for Steve to get off Decadron but also recognizes that he has to have it right now. (Steve is still on 3 mg and isn't sure he's ready to drop down to 2 mg tomorrow. He says his left side is about 80 percent back.) Dr. A told us that another risk with long-term steroid use is weakened bones. So now I'm evaluating Steve's daily calcium intake to see if he's good or needs more. My goal is find a food or foods that fill the calcium need as well as other nutritional needs. Steve doesn't have a huge appetite these days, so we need foods that serve multiple purposes. His daily morning smoothies are great opportunities for sneaking in added nutrition.
Regarding the tumor, Dr. A says that we need to "pray it gets a little smaller," which would lessen Steve's neurological symptoms and allow him to stop taking Decadron. Little reductions to the Damm Spot can have a big impact.
Dr. A also checked Steve's gag reflex. He still doesn't have one. So he'll continue to thicken all liquids and drink through a straw.
His blood oxygen level is stubborn and was 94 percent yesterday. Steve has one more test related to investigating the cause -- a sleep study scheduled at the end of this month. We've not heard results from last week's echocardiogram, which we take as good news. We'll receive a final report after the sleep study.
The home front is busy. Our nieces are spending the week with us for some good cousin fun. Cooper and Brooke are attending Fine Arts Week at our church in the mornings. Katie and Molli spend the mornings in the water, building Lego towers and running around with me. Betty helped me with a sudden beetle infestation of our burr oak tree. (Diagnosis: harmless.) Rae has been driving for us often. Uncle Greg watched all four kids while we were at appointments yesterday. There's not much relaxing this summer, but we're enjoying our time with family and friends.
Monday, August 4, 2008
At Dr. M's direction, Steve today stepped up the Decadron to 3 mg to help with his left-side weakness. Already his left side seems more responsive (for the past week or so it feels as if his left arm and hand are filled with sand, and he's been more wobbly than normal). He's going to stay at 3 mg for three days and then try to drop off again.
Tomorrow Steve sees Dr. A, the radiation oncologist who we've grown to admire, despite his sometimes awkward manner. This is just a follow-up -- we're not expecting any big news from the visit. But there may be a memorable quote or two to share!