Steve is about to leave for his sleep study. He'll spend the night being observed in a lab at a nearby hospital. His pulmonologist is looking for why his blood oxygen level remains low. One possibility is sleep apnea, which can be diagnosed after a sleep study.
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.
Saturday, August 30, 2008
Monday, August 25, 2008
Getting stronger
Steve has been riding a stationary bike a few days each week to start regaining cardiovascular and muscular strength. He showed off his improved strength and endurance twice in the past few days.
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!
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
Stable
Today's MRI is identical to the one taken in June. That means there is no regrowth and no new visible tumor activity. Isn't that awesome?! We will continue to pray that the mass will shrink to provide more relief of his neurological symptoms.
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!
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
MRI on Wednesday
Steve's MRI is Wednesday at UT-SW. After the imaging, he'll have blood drawn, then we'll meet with Dr. M to get results.
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.
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
Guest blogger Liz: Run for Steve update
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 runforsteve@gmail.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,
Liz
Saturday, August 16, 2008
Wednesday, August 13, 2008
Eyes
Steve, Katie and I spent three and a half hours in the opthamology clinic at UT-Southwestern this afternoon. (Cooper hopped on a jet plane with Grandma and Papa this morning for a week in New England.) Here is what we know.
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.
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.
How to fix double vision
You can try to help the "bad" eye with prisms. You can also have surgery. Surgery is not an option right now. There is too much other work going on in his brain, most importantly chemotherapy every other week until sometime next year.
Seeing single
For the next two weeks, Steve is wearing a prism that was cut to fit his current spectacles. It's a special piece of plastic that snaps into place behind the lens for his right eye. From far away, the prism makes that side of his glasses look foggy. When you are close up, you can more clearly see prism patterns cut into the plastic.
With the help of the prism, for the first time since January, Steve is able to see one image straight in front of him. The image is distorted, though, and images to the far right are double. Still, he was so excited on the drive home to see just one of everything right in front of us.
Next step
Dr. Mc, the opthamologist, doesn't think prisms are an ideal solution for Steve. On our follow-up visit in two weeks, he expects Steve to tell him how awful they are.
Surgery is the better option, he says. Even when it's possible one day in Steve's case, it won't be a perfect solution. Right now, according to Dr. Mc's office, there is nothing that can completely restore Steve's sight to single vision as it was before January.
But wait! There's more: Cataracts
We can add yet another reason why we're anxious for Steve to get off Decadron. Long-term use of the steroid can cause cataracts, and Steve has the beginning stages of cataracts -- a cloudy film -- on both eyes.
Sweet girl
We weren't prepared for how long today's appointment would last. Had we known we would be there for three and a half hours, we would have found someone to take care of Katie for the afternoon. She rarely accompanies us on doctor appointments -- playing with friends is much more fun for everyone involved. Still, she was very well behaved, cuddling, singing quietly and eating lots of snacks provided by the clinic.
Friday, August 8, 2008
Daddy-daughter challenge
Katie had a rough night last night. She took hours to fall asleep and woke up multiple times. She was fussy this morning and glassy-eyed. She woke from her afternoon nap with a 100.7 fever.
Our awesome pediatric office was able to see us at 4:40 p.m. on a Friday. By 4:55, we had a diagnosis -- a cold. Like anyone with a cold, she's highly contagious right now, which means we have to keep her away from Steve as much as possible and be careful of what she touches and then he touches. We don't know how susceptible he is right now to germs, but there's no reason to test it. Katie's doctor says one of the current virus strains is often turning into croup and laryngitis.
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
Super daddy and uncle
Here is Steve, reading to Katie, Cooper, Brooke and Molli, all squished in a twin bed, after he worked all day, went with us to the pool and helped them all get ready for bed -- and just a couple of hours before he takes another dose of chemotherapy. Wednesday, August 6, 2008
"Pray it gets a little smaller"
Steve's appointment with his radiation oncologist, Dr. A, went about as we expected. Dr. A reviewed the most recent MRI (from June), checked Steve's vitals and responses and chatted for a while.
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.
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
Green light for chemo (we think)
We're not having the best of luck with blood draws. Today's order wasn't placed as "stat," apparently, so we didn't get Steve's counts until late tonight. (He was able to log in from home to find them.) Though some counts are high and some are low, none are at alert level, so he's assuming he can start taking chemotherapy again tonight. Dr. M will let us know tomorrow if there's trouble. But we're expecting another week of poisoning the Damm Spot and any of its awful spin-off cells!
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!
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!
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