Thursday, April 24, 2008

We're Off

Chris and I, that is. Okay, so we didn't make it to Maui in January like we'd had planned. But Zions National Park isn't a bad second. Easy to get to, sunny, warm and no kids. What's not to like?

We'll be gone until Sunday. Grandma and Grandpa Sudweeks are filling the gap with our children. (Thank you!) Fortunately, Jake's temperature has finally come back to normal this morning. He never did get rid of it in the hospital. They cultured him twice and gave him two rounds of IV antibiotics before we came home Tuesday just in case, but it's obviously just a virus and his blood counts are strong enough right now to handle it.

He had fluids the last two nights to help him over the first difficult days after chemo when he doesn't want to eat or drink or do much of anything but sleep. This morning he's up (well, on the couch) watching another Deal or No Deal that he recorded. So all is right with his world.

And his hair is growing back in very nicely after the two weeks of no chemo. Too bad it's just going to fall out again. At least we know it will come back in the end!

Monday, April 21, 2008

Spring Break

Now that we've got the good news out of the way, here's a recap of our spring break trip to Klamath Falls last week.

1. It's an awful lot of driving through an awful lot of nothing. We drove the full 11 hours on Monday. Saw maybe two dozen other cars in the 3 hours between Winnemucca, Nevada and Lakeview, Oregon. Not to be rude, but I'm so glad I don't live in Northern Nevada.

2. Our condo at the Running Y Ranch was very nice and a great deal. We enjoyed the indoor pool, the video game room, the playground, and the fitness room. Chris and I had dinner the last night at the restaurant overlooking the Arnold Palmer-designed golf course. Sirloin with bleu cheese peppercorn sauce and tuxedo mousse for dessert . . . man, I wish I was eating that tonight instead of a hospital cafeteria salad.

3. Had the strangest grocery store experience ever. We went to a little Safeway near the condo on Monday night to get breakfast things. While we were in the checkout line, a guy from the next line over was staring at Jacob. He walked over, staring at Jake all the time, and asked, "Are you the kid in the paper?"

Jake just looked at me, at a loss. It's not like I knew what to say. I discarded my first thought ("Why, do you want to give us money?") and settled for a simple "No."

To which the man said, again to Jake, "But you have cancer, right?"

There didn't seem any point in denying it. When we nodded, the guy continued, "But did you read about the kid in the paper?"

We allowed as that we were from out of state and had just arrived and finally got away and into the parking lot where we all had a fit of the giggles.

Now we just burst out at random moments: "So, are you the kid in the paper?"

4. Beautiful weather. Okay, not the first day, but Wednesday and Thursday were stunning. We returned to the Lava Beds and clambered through the caves, and finally made it to Crater Lake. The sky was blue, the sun was shining, and there was something like 25 feet of snow on the ground. We took the most beautiful photos and now we've crossed something off our list--seeing the deepest lake in the United States.

5. New family. I got to meet, Jeanne, my grandfather's widow. I think we flustered her a little (Spencer will have that effect on anyone) but she was very kind and welcoming and showed us all sorts of things around the house. He was an award-winning photographer, writer, pilot, Marine and too many other things to name. Meeting Jeanne was pure pleasure.

6. Coming home is sweet. Especially after spending a night in Elko, Nevada. That's all I'm going to say, because I'm working on being nicer.

Scan Day

Thank you Dr. Million.

Thank you Hunstman Cancer Institute.

Thank you Radiation Oncology department (Troy, Nancy, Glen, Diane, Debbie . . .)

Today, I would pay every dollar of our 35, 996 dollar bill for radiation myself without blinking.

The tumor is gone.

According to the MRI Jake had this morning, there is absolutely no sign of tumor or tumor markers left where just three months ago there was a tumor the size of a lime. We knew it had shrunk, of course, since it was so obvious in his cheek in January. But we hardly dared hope for this.

Now we start on the next 26 weeks of chemo to mop up any microscopic cancer cells hiding in his blood. In fact, we're in the hospital right now waiting for inpatient chemo to begin. It might be a while, because he's running a fever and they have to culture his blood. But hey! We've already picked up where we left off on Survivor three weeks ago and we have another season waiting in the bag. Plus Jake's favorite game show is on tonight, Deal or No Deal.

Personally, I could watch any amount of mindless entertainment tonight. It's a good day. The best day since January 2.

And tomorrow Chris and I will celebrate our 16th anniversary.

We've already got our present :)

Friday, April 4, 2008


Some time ago, our wonderful niece, Karin, sent a care package for Jacob and his siblings. Inside were four stuffed Dr. Seuss creatures. On Easter Sunday, I finally got all the kids in one place with their creatures for a photo.


Jake and Troy, our favorite radiation tech

Troy and Nancy getting Jake ready

The mask is locked down on the sides and top so he doesn't move. The small white squares are the guide marks so that his position was always precisely the same (the table he's on goes up and down to get him lined up with the laser dots coming from the walls--I swear, it was like being inside a sci-fi film). A wonderful tech named Debbie decorated the mask for him--we brought it home when he finished radiation and have it in his bedroom. He has a bite blocker in his mouth to keep his teeth and mouth still and in position. The table itself was narrow and hard and the room was always freezing--the techs got used to grabbing at least three heated blankets every time we came. Once everyone left the room and the 12-inch thick lead-lined door was closed, Jake got to lie there for 15-20 minutes while the machine moved around him and delivered its radiation at precise locations. The only real hardship Jake experienced during these sessions was the time Troy forgot to change the music and Jake had to listen to country.
Don't forget to read the next post down--I was busy updating today :)

The High Cost of Doing Good

We got the bill for Jake's 28 sessions of radiation.

35,996 dollars. And zero cents.

Jacob is now far and away our most expensive child :)

We're very blessed in Chris's job and the insurance it provides. But man! Seeing a number like that is enough to make you look twice.

In other news, Jake and I made it through episode 11 of Survivor: Pearl Islands. That was 4:15 in the morning. Jacob managed to fall deeply asleep until about 8:00 a.m., but I pretty much just listened to my iPod and dozed a little in the chair. Fortunately we were home before noon so I could have a nice long nap.

He never did get sick--hooray! But he's a harder time bouncing back this week. He was tired and dizzy and didn't want to eat or drink for several days. He's back down below 90 pounds. He also had his first fall on Wednesday. Between being dizzy and the neuropathy in his feet, he just went down in the middle of the kitchen.

But here's the great news--he's got a two week break! He just completed the first 13 week cycle of the VAC protocol (he'll do three cycles in all) and after 13 weeks he doesn't have to have any treatment until his next inpatient on April 21. It comes just in time for spring break, allowing us to leave for Oregon without having to have chemo first, and hopefully his hands and feet will recover a little without any Vincristine for two weeks.

More than anything, though, it's a chance to be a little more free. No doctors, no clinic, no hospital--just the home care nurse to draw blood twice a week. And neupogen shots. And antibiotics on Mondays and Tuesdays . . . okay, so not completely free. But a little is better than nothing. And we're going to enjoy ourselves fully.

Tuesday, April 1, 2008

Late Night

Here we are at Primary Children's. 1:30 in the morning. Jake's chemo started at 8:00. He's got one last dose of Mesna to go at 2:00 and then it's just peeing until we go home.

Apparently we're not sleeping tonight. Jake's a big Survivor fan so I bought him the DVD of Pearl Islands for this admission. He's decided he's going to watch the entire season before we go home in the morning. We're halfway through episode 7 now and neither one of us is feeling the least bit sleepy.

The bad news: His neuropathy definitely worsened this week after the 3/4 dose of Vincristine last week. He even has a sign on his door saying Falls Risk. So he only got a half dose today. I don't know if I need to start worrying about that or not. Something to ask the doctors.

The good news: He gained another 2 pounds this last week. And he's had no nausea at all.

Off to watch the 7th episode tribal council.

One thing about Survivor--lots of things that make me say "Things could be worse. At least I'm not (sleeping with hermit crabs, wearing the same clothes for a month, drinking blended octopus and bleeding clams)."