Update from Keith: July 20th, 2008

A lot has taken place since my last blog update. I apologize in advance if this is an especially long entry. 

As I suspected on July 4th, Taylor ended up in the hospital through the following Tuesday.  It seemed an excessively long stay, but it was only a blink of an eye compared to her January, February and March stays. 

Taylor held up pretty well after she was finally released from the hospital.  Her release coincided with the rebound of her white cells which meant that she was in a pretty good place when she came home.  That was good, because the last week has been hectic. 

It started on Sunday with a fundraiser for Children's Hospital at which T was the guest of honor.  It was extremely well attended by our friends and family - overwhelmingly so.  In fact, it was much  more than we expected.  For people who attended who may not have seen much of Taylor, her prolonged absence was because she was around the corner playing various games with the other kids (including tag and other games that required her to run).  I was ecstatic because she just seemed like a regular kid.  It has taken so long to feel like that!  I couldn't begin to say how much money was raised, but I know that all of us (and especially Taylor) had a great time and appreciated everyone's attendance.  

Wednesday marked the beginning of our two day trip to Disneyland.  We are forever indebted to a friend (I shall allow her to retain anonymity so that she is not overwhelmed with Disney-related requests) who works for Disney who helped arrange our hotel reservations and more.  We arrived early on Wednesday morning and checked into our hotel.  We wanted to get to the park early so the lines might not be too long.  We walked over to Disneyland and rented a wheelchair for Taylor (her walking is still awkward although she is working on it; the doctors continue to withhold Vincristin because of the neurological effects it has caused, demonstrated by her walking).

Our "Disney friend" had suggested that we go to Customer Relations inside the park and see what arrangements we could make to accommodate Taylor's issues. When we got there we explained that Taylor had cancer (this was probably unnecessary; her bald head and NG tube probably gave that away) and we were not sure about how disabled access worked on some of the rides. The lady looked at Taylor and handed us a pass that she said we should show to the ride operators when we got to each ride.

Well, the pass turned out to essentially allow us to skip the lines. Obviously, that was a huge benefit and much appreciated as we were unsure of Taylor's stamina in some of the lines. The pass, though, ensured that Taylor could get to see each ride that she wanted to.

The first day at Disneyland we had a packed schedule. Our anonymous "Disney friend" had helped arrange for us to see the Jedi Training Academy show at 11:30 in the morning and had lined up special seating for the Fantasmic show at 9:00 at night.

When we got to Disneyland we rode a few rides first before making our way over for the Jedi Training Academy show. In this show, children are picked from the audience to receive Jedi light-saber training that culminates in a fight against Darth Vader. Taylor was one of the 20 lucky kids picked for the show we watched (the family next to us had been to 4 shows before their kids were finally picked). Taylor was so proud to don her Jedi robes and wield her light-saber. The Jedi Master taught the kids some moves with their light-sabers and then it was time to fight Darth Vader. Each time a child walked up to confront Vader, he would make some comment from the movies ("Your powers are weak" or "You don't know the power of the dark side" or some such remark). When it was Taylor's turn, Darth Vader said, "The force is strong with this one." Taylor was so proud! After she finished off her fight with Vader, the Jedi Master had her fight off two Stormtroopers as well. She was the only kid who got to fight the Stormtroopers, too. She had such a big smile when the show finished! I think I even took some pictures through my tears.

After the Jedi training we went on a few more rides and then headed back to the hotel for naps and to cool down (it was hot!). We came back to the park at 6. The kids rode on the new submarine ride and a couple of other things before we started to make our way to Frontierland for the Fantasmic show. The show stage is across the river on Tom Sawyer's Island so people line up all along the river bank and the steps leading up to "Orleans Square" to watch the show. We had been told to check in approx. 30-45 minutes early so we went over an hour early figuring we'd ride some of the rides over there first and then check in. Well, even a full hour before the show, spectators choked the area, jostling for places to watch the show. We abandoned thoughts of another ride and checked into the VIP area where we had space waiting for us. There were some steps roped off in the VIP area (room for probably 50-75 people). There were already others waiting there so we sat down.

During the wait for the show, there was a band playing on a raft that went back and forth along the river. Taylor entertained the crowd in our section by dancing for almost the entire hour until the show began. Everyone was taken by the site of this bald girl with a tube in her nose dancing as if she had no cares in the world. In fact, some people in an adjoining section even sent over a dessert plate to us after watching Taylor's performance (I didn't tell them that she couldn't eat).

The Fantasmic show was terrific and the kids loved it. The Disneyland fireworks followed the show and were fabulous. We ended the evening with one more ride on the Jungle Cruise (that was the third trip on that ride that day) before heading back to the hotel and turning in for the night. It was a wonderful day. Cancer seemed a distant memory.

Day 2 at Disneyland started with a sweep through Fantasyland. We rode Alice in Wonderland, Mr. Toad's Wild Ride, Peter Pan, Snow White, et al. With the pass, we rode all of those rides in less time than it would have taken us to stand in line for just one of the rides.

While Taylor is tall enough to ride any of the rides at Disneyland (she's a tall kid); Charlie is not. The first day, Taylor refused to go on any ride that Charlie could not go on. Although we thought it a very sweet gesture, we encouraged her to have fun the second day and ride some of the taller kid rides if she wanted to. She decided to try Star Tours (I'm not surprised as it is based on Star Wars). She loved it! Later that day, she tried Big Thunder Mountain Railway and thought that was a great ride (as we exited the ride she told me, "That's the fastest roller coaster in the world, as far as I know."). Charlie's favorite ride was Buzz Lightyear Astro Blasters (I enjoyed that myself). We also caught a parade on the second day at the California Adventure park featuring the characters from the various Disney Pixar movies. The kids loved it. When we finally left Disneyland for good on the night of the second day, Taylor bawled. She must have cried for 20 minutes. She told us it was because she had such a good time with her family. We were touched.

Frankly, she had good reason to cry. Leaving Disneyland that night meant one more night in the hotel followed by chemo the next day. That's right, we are cruel parents. Disneyland fun followed by chemo hell.

Taylor got her chemo on Friday night. She was in a great mood throughout Friday. Saturday was a rough morning. She slept a lot, but threw up whenever she awoke. She had terrible leg pains for a while that made her very uncomfortable. Still, the hospital released us in the early afternoon, and Taylor was home by 3. She recovered quickly and was in a great mood throughout the rest of Saturday. She's in a great mood today, too.

It was a wonderful week. For me, this week represented the light at the end of the tunnel. Although we still have months of treatment to go, I feel like I have glimpsed what the end will bring, and it will be wonderful.


Kori said...

I got here to your site from an email from a friend who knows your Disney friend; small world. I just want to tell you that reading your post brought tears of both joy and grief to my eyes, and I have such admiration for you and your entire family. My thoughts are with you today.