Disneyland, Day 3

We had early entry privileges again Sunday, but we didn't need to be first in line this day. We mostly wanted to ride our favorite rides again and hit a few new ones.


We spent the first part of morning at Disneyland, riding Alice in Wonderland, the teacups, Space Mountain (just me and Cooper), Buzz Lightyear, Star Tours (just me and Coop), Astro Orbitor and the Haunted Mansion. We were among very few families for the first show at the Enchanted Tiki Tiki Room. The animatronic birds' songs have played off and on in my head since my first Disneyland trip in 1986. Now both Cooper and Katie sing them from time to time.

We said goodbye to Disneyland and headed to California Adventure. We caught the first show of Turtle Talk with Crush then headed to Paradise Pier for the Golden Zephyr, Mulholland Madness, Jumpin' Jellyfish and Sun Wheel, a giant Ferris wheel that affords beautiful views, albeit through a cage that obscures attempts at photographing the scenery.



And then our tour was over. We returned to our beautiful hotel lobby, turned in the rented scooter and waited for our car. Katie fell asleep on the drive to Ontario and slept almost the entire time while we picked up boarding passes, checked luggage, went through security and waited at the gate. She did not sleep when we were taking off. She did cry and sometimes scream for about 10 minutes. I had visions of appearing on cable news channels as the family with the unruly 2-year-old who gets kicked off the plane. Of course, she had reason to be fussy. She hadn't eaten much in three days and was still struggling with a stomach bug. Our flight attendant was the most sympathetic we've encountered in almost seven years of flying with children. She let me unbuckle Katie from her car seat, and I was able to hold her until she settled.

The rest of the flight was uneventful, though late. We landed, picked up luggage, took a bus to our car, drove to Love Field to pick up Aunt Ami and pulled into the garage by 11:30 p.m.

We loved our getaway, and we've been talking and reminiscing about it ever since. In fact, Katie told us tonight that she's going to keep growing big so she can ride Space Mountain.

More photos from the day are here.

Down to 3 mg

Steve continues his march down off Decadron. Yesterday he dropped from 4 mg daily to 3 mg. For the first time in this round of stepping down, we notice the difference. He is slightly wobbly. His voice is somewhat weaker, with a hint of slurred speech returning. We're not alarmed, though -- it's just part of the balance in his healing process. (I am no expert, but I have become much more aware, with growing appreciation daily, of the importance of balance in just about everything.)

I'm including this fun photo, from March 2007, because:

1. It makes me laugh. We were enjoying our last day of vacation during spring break, playing at the children's museum in Lakeland, Fla. Steve was showing off his juggling skills to me, Cooper and Katie. We loved it!

2. I can't wait to see Steve juggle again.

3. I'm convinced that this was near the beginning of the Damm Spot. About two weeks before this photo was taken, Steve had a high fever followed by sudden onset of Bell's Palsy. The facial paralysis mostly resolved in about a month, and no MRI was ordered, which is normal, standard care. I think that was the signal of trouble in his brain. There's nothing we could have done even if we could have known, but I can't help but think about the timing. (All of Steve's current doctors are aware of the timeline, and they've all expressed interest, but no one has declared a connection.)

A note of thanks (written by Steve)

Dear friends,

I'll apologize up front: I'm not a writer.

It is hard to believe that six months have passed since my first MRI indicating a one-half inch lesion in my brainstem. Test, hospitalizations, scans, a biopsy and a couple of extra holes in my skull later confirmed the preliminary diagnosis: a rapidly-growing grade four gioblastoma in my pons. Y'all know all that.

Since then it has been quite a journey. How coincidental, then, that on June, 11th, exactly six months after my first MRI, we received the amazing news that my scans indicate that the tumor, the "Damm Spot," is dead! It took (and is still taking) time for all this to sink in. I'm not out of the woods yet, though. While the scans don't show any "hot spots" or tumor activity, back when "Spot" was still viable it was constantly shedding those nasty little cancer cells that are now swimming around my brain. My current chemotherapy and pharmaceutical treatment plan will be targeting these little monsters and hopefully kill them off before they dig in and grow into new tumors. We've been told that it is not a question of if, but when, the tumors come back. We'll cross that bridge when we come to it. If you've read the blog, you know this, too.

I couldn't have possibly imagined the amazing outpouring of love, prayers, support and selflessness that have surrounded our family during this journey. I have felt overwhelmed by it all at times. I only wish that I had some way of letting each of you know how you have helped me and my family through all this craziness. It has been so much easier to remain positive when you are surrounded by the love we as have. We have been and are continue to be truly blessed.

Some of the medications I'm taking, while they help me move around and allow me to function, also thin my skin and cause me to bruise easily. Any cuts I get take a long time to heal. To protect me, Tyra has told me she wants to cover me in bubble wrap. You have been the bubble wrap for my family.

I wish you all peace and love.

Out Damm Spot!

Steve

Disneyland, Day 2

Thank goodness for the two-hour time difference between Texas and California. We had no trouble waking up in time to get ready for early entry on Saturday, our second day at Disneyland.

One of the newest rides at both parks is Finding Nemo Submarine Voyage, which took the place of the old sub rides. The wait is notoriously long, as the ride allows just 900 or so guests through an hour, and the ride lasts 13 minutes. To ride without spending hours in line, you need to be among the first in line. So, we were the actual first people in line for the whole day.

While we were waiting at the gate, a cast member asked the family next to us if they would open the park. Of course, they said yes. Cooper, who is the boldest member of our family of four, asked what they were doing and then asked if we could join, too. The family was nice enough to share their honor, and the cast member agreed.

The eight of us entered before anyone else and led the countdown from 10 to 1. Then we screamed, "Let the magic begin!" What an exciting way to start the day.

We rushed to Tomorrowland and grabbed the first Nemo sub. Honestly, it was a good ride but I'm glad we didn't wait in the heat for it -- it wasn't that spectacular.

That morning we also rode (sometimes with Steve):
Mad Tea Party
King Arthur Carrousel
Jungle Cruise
Pirates of the Caribbean
Tarzan's Treehouse
Indiana Jones Adventure (just me and Cooper -- it was his favorite ride of the weekend)

Then we ate breakfast at the Plaza Inn. This was the long awaited breakfast with Minnie and friends. If you ask Katie how breakfast with Minnie was, she'll tell you, "Well, she didn't eat with me. She just loved on me." I hadn't explained in advance that the characters wouldn't sit down and dine with us, an important detail when you're 2. Nevertheless, we all enjoyed the meal and hugs.


After breakfast we went to the Golden Horseshoe to enjoy Billy Hill and the Hillbillies, an amusing country music/fiddling/comedy show.


Our next stop was California Adventure. Katie loved Monsters Inc. from the day before and wanted to show Daddy. We also fit in the Muppet Vision 3-D movie, fun at a Bug's Land and Soarin' Over California. Cooper and I braved the Grizzly River Run and got soaked -- perfect timing before heading back to our hotel.

After naps all around, we went swimming in the hotel pools, enjoyed a special dinner at Catal in Downtown Disney and settled in for an entertaining story time at the hotel. It didn't take long for Steve and the kids to fall asleep, and I ventured back out to the parks for souvenir shopping.

More photos from our fun day are here.

Sunshine

Katie, Cooper and Aunt Ami,

just before she left Saturday after a full week of TLC

Steroid update

Steve has successfully stepped down from 6 mg to 5 mg and now to 4 mg of Decadron in less than two weeks.

In the past when he's dropped from 6 to a lower dose of the steroid, we notice symptoms right away. But this time his speech and voice are stable (weakened but no more so than two weeks ago), he has retained function of his left side and he's not wobbly when he walks.

If this welcome stability and strength continues, he'll hit 3 mg on Monday.

Disneyland, Day 1

With two and a half days at the two parks, we had time to spread out the rides and shows. I used a Disney trip-planning software program and a book I've had good luck with before to plot out the best order for the rides. The trick at any Disney park is to reduce the amount of time you spend waiting in line, usually achieved by being at the gate well before the park opens and being willing to use the afternoons for shows and/or naps.

In the morning, we fit in (Steve sometimes watched from the sidelines):
Peter Pan's Flight
Dumbo
Matterhorn Bobsleds (Katie's first real roller coaster, which she declared "awesome")
Many Adventures of Winnie the Pooh
Chip 'n' Dale's Treehouse
Buzz Lightyear Astro Blasters


Then we headed to Disney's California Adventure, the adjacent park. We watched the stage show Aladdin, then Steve rolled off to the hotel for a nap. The kids and I braved Monsters Inc. Then Katie fell asleep in her stroller.

Cooper hit A Bug's Land and rode some small rides by himself. The operators insisted an adult go with him on the bumper cars, but I couldn't abandon Katie and her stroller, so a cast member was Cooper's passenger.

Katie woke up while we were in line for Playhouse Disney Live, an interactive stage show with dancing, clapping, bubbles and falling streamers. We then picked up Steve from the hotel and returned to Disneyland for the afternoon parade, Splash Mountain (just Cooper and me) and a cruise through Pirates of the Caribbean.

We were all wiped out and ready for bed by the time we returned. Katie wasn't feeling completely better yet (and wouldn't for the entire trip) but managed to stay cheerful if not sometimes quiet (for her, at least).

For the day's photos, click here.

Disneyland, arrival

As you may recall, the day we headed to the airport for Disneyland, Katie got sick in the car and again on the flight. She worried aloud for a while about Minnie Mouse seeing her "all dirty." I assured her she could bathe before we met Minnie.


When we walked off the plane and into the terminal, Katie asked, "Where's Minnie?" She seemed certain that the giant hair-bowed mouse was going to meet us at the gate.


After gathering our bags and finding our driver, we settled in for the drive from Ontario to Anaheim. Both Cooper and Katie fell asleep in the car. It didn't take long to wake them once we arrived at our Disneyland hotel.


We opted for room service for dinner that night. The kids cuddled up quickly for bed, wearing their personalized visors, gifts from a group of Betty's friends.

Another question

Do the latest great results mean that Steve's cancer is in remission?
Well, not exactly.


Dr. M explains it this way: Some people think that remission means cure, but that's not the case. In Steve's current case, there is "no evidence of live tumor." Still, the cells left behind "have the potential to grow again but no one knows when that will be."


I certainly don't want to diminish our glorious news -- we have much to celebrate! I do want to offer a realistic picture. Among our many prayers now is that "when that will be" will be never.


I'm still working on editing the hundreds of Disneyland photos. Here is one from our last morning. Steve said his face hurt from smiling so much the day before. How great is that?!

Awesome news (detailed version)

What did the PET scan show?
Steve's PET scan (taken last week) showed activity in the brain, based on how much radioactive glucose was metabolized by sections of his brain during the test. The area of the brain stem where Steve's tumor resides was black -- no activity at all. So it looks like the tumor cells that are there have died. Also, the PET scan found no other hot spots, no other areas of the brain that are harboring additional tumors.

What did the MRI show?
The MRI (taken today) showed that the tumor is stable and is slightly smaller than it was two months ago. It's difficult to say exactly how much smaller, as the tumor is not a perfect sphere. When we looked at the images side by side today, Dr. M measured diameters on each image. Looking at one cross section of the tumor, for instance, showed the tumor was 22 mm across in April and 21 mm across today. Another cross section showed that tumor was 6.9 mm across in April and 6.69 across today. All those little numbers add up to smaller mass. Woo hoo!

Dr. M explains that dead cells take up less room than live cells, so the slight shrinkage is somewhat expected.

Also, if you look at the MRI image, you can see where the tumor is slowly breaking up. In April the tumor looked denser (as indicated by the amount of white on the scan). Today the tumor looks more dissipated. That Damm Spot is on the run!

Why is the tumor dead?
1. Radiation therapy combined with chemotherapy
2. Answered prayer
3. Steve's amazingly positive attitude

If the tumor is dead, why does Steve still have symptoms?
The cells are dead, thank God, but they're still there. The brain is an amazing organ that protects our bodies very well. It is reluctant to let anything foreign in, and it is reluctant to let anything out. The tumor is a giant wound that is going to take a long time to heal. As long as the mass (and accompanying inflammation) is there, pushing around where it has no business, there is the possibility of some kind of symptom.

If the tumor is dead, why is he still taking chemotherapy?
When a brain tumor is alive, it's constantly sending off tumor cells. So while those X-rays were aimed directly for the tumor back in February and March, they couldn't reach all the rogue cancer cells running around his brain. The chemo is now chasing down those extra cells, trying to kill them. (The roaming cells are too small to show up on any kind of scan.) The goal is stop them from congregating and forming new sections of live tumor. (So much violent imagery in that paragraph!)

What about his vision?
Dr. M's office is working on a referral to a UT-SW opthamologist. We hope that there is some therapy or relief that the eye doctor can recommend for Steve's double vision, which hasn't resolved or improved since it began in January. The right eye doesn't track with the left. He's somehow able to focus out of just one eye when he needs to -- I think it's kind of a Jedi mind trick.

What about his respiratory issues?
The office is also working on a referral to a pulmonologist to address his respiratory problems. His blood oxygen level was 95-96 today -- better than 92 from two weeks ago but still not ideal. He's continuing to use an inhaler and allergy medicine for relief.

Is Steve still taking the steroid Decadron?
He had been taking 6 mg a day for the past few weeks. On Monday, he stepped down to 5 mg. Dr. M wants us to be as aggressive as possible stepping down. If this week goes well, he'll try 4 mg next week, and then 3, working down as safely and as quickly as possible.

Why is it important to reduce the Decadron?
He definitely has needed the steroid to help with the symptoms related to the swelling and the tumor. Long-term use is taking its toll on Steve's body, though. His skin has thinned, and typically minor flesh wounds are taking a long time to heal. He's been fighting thrush off and on since February. His muscles have thinned a great deal, comprimising his strength and stability. The steroid can mask signs of infection. It can cause irritability and manic behavior.

As he steps down, we'll keep a close eye on symptoms. Dr. M says we may need to allow some symptoms to come back for the sake of dropping down. So, he may need to deal with slurred speech again and/or uneven gait and/or other issues.

What about his fatigue?
Steve's body continues to cope with many challenges. The chemotherapy zaps him. The many other drugs steal energy (though some try to restore it). As his brain works on healing, the rest of his body is just worn out. Dr. M encourages him to rest when his body demands it and not to get too discouraged.

What about other symptoms?
Back in November, Steve started having frequent hiccups. They stopped after the biopsy. Now they're back. Dr. M wants us to pay attention, in the small chance they signal seizures.

He's also having tremors again on his right side, most noticeably when eating. Dr. M says the tremors are related to the Decadron and should subside as he steps off the drug.

His ears have been plugged for a while, as if he's in an airplane all the time. They look normal, though. Dr. M suggested we discuss this with the pulmonologist.

When is the next check-up with Dr. M?
We're scheduled to return July 11.

When is the next MRI?
The next planned scan is early August.

Will Steve go back to M.D. Anderson?
Our plan for now is to continue seeking scans at UT-SW during this course of treatment. If at any time we're uncomfortable with what we're hearing here or if a scan shows recurrence, we'll go back to Houston. We also plan to return at the end of this 12-18 months of chemotherapy.

What great things did Dr. M have to say about Steve?
She says that he leads the pack among her patients for having a great attitude. She marvels at how little he complains, how determined he is to get better, how focused he is on getting rid of the tumor. She says his attitude and spirit are key to his recovery.

Our thanks extends to all of you, who continue to shower us with prayer, good wishes, help around the house, meals, cards, phone calls, gifts and more. Some days I think we can just return to our "normal" life, when we didn't rely on others too often (and we could actually extend help to others), but most days I realize that your help is still so vital, that we're fighting every day and need a deep team to keep us going. Steve and I know how blessed we are that you all are fighting with us and rejoicing with us!

Awesome news (quick version)

The PET scan shows the tumor is no longer active.

The MRI shows the tumor is a tiny bit smaller (probably because dead cells take up less room than live cells).

Dr. M believes that the radiation therapy combined with the chemotherapy knocked it out. The ongoing chemotherapy is designed to kill the live cancer cells that are roaming around his brain. The live cells are too small to show up on any scan. The hope is they stay that way, never congregating and creating more.

More details of this awesome news to come later!

Coming home

Vacation can't last forever, so we're coming home. Katie fell asleep in the ride to the airport 90 minutes ago and has been ever since. Steve is feeling well, though maybe a bit wistful for the electric scooter. Cooper made a friend at the gate and has been playing Legos and discussing Spiderman for the past hour. Real life begins again soon!

Full day

We are happily worn out from our first day at the parks. Katie was ill again this morning. After a phone call to expert Aunt Mel and a cab ride to the nearest 24-hour pharmacy, we gave Katie some anti-nausea medicine that seemed to help. She's much better tonight.

You should see Steve on his rented electric scooter! He mastered it quickly and weaves in and out of the Disney crowds with ease. I think he's enjoying being behind the wheel, even if it's battery powered, for the first time since mid-December.

Landed

Poor Katie got sick again three times. She's been so good-natured, even though we won't let her eat or drink right now. She's worried that Minnie Mouse will see her like this and is anxioius for a bath.

Trip report: Surely it will get better!

About five miles from home, on the way to the airport, Katie threw up all over herself, the car seat and the new car. She seems to be feeling OK now, after about 15 minutes of freaking out over the experience. We're praying it's a short bug and she'll make it through the flight OK. She is tired but not behaving like she's ill. Updates later!

Another adventure

Steve's PET scan was fairly easy yesterday, he reports. The tech had to stick him twice to get a good IV entry. The rest of the test was simple. We should learn the results Wednesday.

While Steve was at UT-SW, Katie and I were at Cooper's school, celebrating with about 140 graduating first-graders at their year-end party. The festivities included hula hoops, a clown on stilts, snow cones, popcorn, temporary tattoos and tricycle races. Today is his last day of school. We all attended the morning assembly, where Cooper was recognized among his classmates for perseverance. We think it's a great way to end a sometimes rocky year. Cooper has almost always maintained a good attitude the past six months, especially at school. He's definitely had some rough moments, as we all have, but he remains enthusiastic and energetic about just about everything. His spirit is contagious.

After we pick him up at 3 p.m., the four of us are headed to the airport for a little trip to Disneyland. We've been planning the California getaway for months but remained somewhat hesitant, not knowing how Steve would handle the crowds. We've rented an electric scooter for the trip, so he can stay off his feet. He'll be in the parks with us early in the day, before the sun is too high, and later in day, when the sun is going down. He won't ride many rides -- we certainly don't need to jostle that sweet head of his. We're stocked with sunscreen, hats and other protective gear. We're staying at a hotel at the resort to make coming and going easier. We are super excited! (We took Cooper just before he turned 3, and we've always promised Katie she could go before she turns 3.)

My mom is still in ICU at Scott & White Hospital in Temple. She is having another scope today, as there is still some internal bleeding. I drove to Temple and back on Tuesday to see her. She is in excellent hands there. Still, I'm still a little nervous about leaving the state while she's so ill. I do trust that whatever happens is what is meant to be. She has a peace about her that I haven't seen in some time.

Improving

Steve's blood oxygen level is up to 96. His spirometer reading was much better, too. The thrush is mostly resolved.

Steve will stay on his new allergy/thrush/inhaler meds for two weeks. By then we'll have seen the oncologist, Dr. M, who can make sure he's continuing to improve. Brooke suggested today that we talk about seeing a pulmonologist if necessary.

The next medical step is a PET scan on Wednesday. This is a new diagnostic tool for Steve. Dr. M says she used them more frequently at her previous center (the Dana-Farber Cancer Institute in Boston) than they are used at UT-SW. A PET scan looks at chemical activity in the body. Steve's will be focused just on the brain. It will be used to help determine the current state of the tumor, look for potential tumor cell growth in other parts of the brain and serve as a baseline for future scans.

Steve will need to fast the morning of the test. He'll be injected with a radioactive tracer and, after the tracer has time to move around his body, he'll be moved into a scanner. The test should take about two hours total. We expect to learn results at the June 11 appointment with Dr. M. That's the same day as Steve's next MRI -- we'll get those results the same day.

I expect Steve and I will both be anxious in the days leading to June 11. We're taking Cooper and Katie out of town for a long weekend to celebrate the end of the school year. When we get home, Aunt Ami will be here for a few days to help with the transition to summer, appointments and general TLC.