Journal Entry


Tuesday morning, July 15, 2003

It's a world of laughter, a world of tears,
It's a world of hope and a world of fears,
There's so much that we share, that it's time we're aware
It's a small world after all!!

Konnichiwa (English translation: Good day!) and hello from the largest city in the world - TOKYO, JAPAN!!! Thirty million people exist here in the former capital of the shoguns and on an earthquake zone. Praise God that we've arrived safely and that so far we have had the most fabulous once-in-a-lifetime experience imaginable!!!!!!!!! Thank you, Make a Wish Foundation!! The long, white limo pulled up in front of the Ronald McDonald House just after Christi presented a check to the "house that love built". The check was mailed from some great folks back home for Christi to donate to Ronald in her honor. (Thanks friends of Christi!!) We all handled the long flight extremely well with a combination of sleeping, reading, eating, and playing. We thought we had licked jet lag, but soon learned that would be our only setback.

Immediately upon our arrival into Tokyo's Narita airport, we stopped off to use the restrooms. I felt like a real tourist showing the girls the "Japanese style toilets" available and taking a picture of the "squat" toilets. Needless to say, the girls opted to use the American (Western) style toilets. (smile) Next, we cleared customs. Our daughters didn't realize the significance of receiving their very first stamps in their passports, but we took pictures and explained it.

Then we saw the sweet Make a Wish (volunteer) Greeters holding a sign with Christi and Shayla's names on it welcoming them to Japan. Tears fell out of my eyes knowing that total strangers were so giving of their time to ensure we were safe and settled in this foreign country. Unbelievable kindness!! (Thank you, Katsu and Junico!) Katsu, a young Japanese man, grew up in America with English as his first language, but he has now lived in Japan for six years and is fluent in Japanese as well. It sounds like he helps most every American family who comes to Japan for their Make a Wish trip as well as accompanying Japanese families to the states for their Wish Trips. June, also Japanese, is a flight attendant with Northwest and had just gotten off of a flight from Detroit. She didn't need to stick around to greet us, yet she did. How sweet!!

Make a Wish's Katsu helped Shayne purchase our bus tickets and even rode to the hotel with us - one hour away. We checked into the gorgeous Sheraton Tokyo Bay Resort where we have a beautiful, ocean (Tokyo Bay) front room with a balcony. The room is decorated in an Ocean Club (kid friendly with lots of dolphins) theme complete with little chairs, beds and little steps. It's darling! While the bellhop and Katsu were ensuring that we understood everything in our room, I heard Shayla in the bathroom yell, "Hey! What's that????????????!!!!!!! Mom!!!!!!!!" As I ran to assist her, laughter overcame me as I realized that Shayla had mistakenly hit the bidet button and water was squirting all over her little bottom. "I don't like that!!!" she yelled as she continued to sit there. I dried her off, quickly composed myself and rejoined Katsu and the bellhop. I overheard Shayla tell Christi not to push THAT button because that is how they clean the toilets in Japan. (As soon as our greeters had left, I explained to the girls that that is not how they clean the TOILETS in Japan. (Hee hee! I knew this trip would be a great learning experience in ways I had never imagined!)

Despite the best of efforts by Shayne and the Japanese hotel computer assistant, we were unable to establish an Internet connection. Therefore, I was not able to let anyone know we had arrived safely, nor were we able to learn the MIBG scan and possibly other results of her tests - IF they were even back. We told ourselves to put it out of our minds and to just enjoy Christi's Wish Trip. And we did!

The Make a Wish Foundation did not arrange for us to go to Sanrio's Puroland (Hello Kitty amusement park) because they thought we had changed our minds and no longer wanted to go. Therefore, on the bus from the airport to the hotel, Shayne quizzed Katsu with how was the best way to get there. Katsu basically suggested we did not go due to the fact that it was very far away and would be about a $200 (each way) cab ride or would involve an extensive (two hour with many line switches) train trip without English assistance, plenty of walking and many stairs to maneuver. (We brought Christi's big jogging stroller as well as Shayla's light-weight one so that they would be comfortable.) We had told Christi that she was going to go to the "Hello Kitty" amusement park before we received the actual schedule from Make a Wish so late and realized it was not included, so we knew we had to get there - somehow! Prior to our departure to Japan, I emailed our teacher exchange friend (Saiko, OSU - 2001) and asked if she would take us to Puroland on July 12th since we were planning to spend that day with her. We didn't hear back from her before we disembarked New York so we were not sure what was up and we were unable to access email. Just that soon, the phone rang - it was Saiko who had purchased Sanrio Puroland tickets for us and told us that she and her sister would come to our hotel at 9:00 AM tomorrow to escort us to the (Hello Kitty) amusement park. Yipeeeeeee!!!!! We slept, as well as possible, and woke up about 2:00 AM – all of us unable to get back to sleep due to the great time difference (13 hours) between Japan and America.

The hotel has a huge, daily breakfast buffet in their lobby so we went to breakfast when it opened at 6:30 AM. "I love Japan!" declared Shayla and Christi chimed in with, "I knew I would LOVE it here and I do!!!" The girls ate like champs and we were glad that Shayla was free (under five) since our bill came to 82,000 yen. (Approximately $75.00) Still, it was less than we had expected knowing my friend from Japan in New York warned me that a cup of coffee could cost $12.00 here. We're most thankful for the generous check for the food allotment from Make a Wish. Then we explored the hotel killing time and waiting for 9:00AM to arrive. The girls saw a Japanese rock garden at the hotel - something they knew about, but had never experienced in person. (I don't believe they cared for the serene atmosphere as Shayla asked, "Can we go climb on the rocks?" even though she knew it was a place for quiet reflection and solace. (Funny, Shayla!)

While waiting for Saiko in the hotel lobby, Christi was talking about how she liked taking Saiko with her to preschool at Betty Jane where Saiko taught a bit about Japan to Christi's 4 year old class one day. And I shared with Christi how my school liked having Saiko come into all of the classes (k-8) to teach a bit about Japan to them too. I didn't tell Christi how much she used to love having Saiko arrange her long, blonde hair in beautiful little braids and other cute styles nearly every morning, nor about Saiko and I together driving a stick-shift vehicle to bring home the Christmas tree from Bellevue. (Saiko knew how to shift so she did that while telling me when to push down the clutch. What a hoot! Teamwork!!) The next thing we knew - there was Saiko!!!!!!!!!!!!! She looked just as beautiful as when she lived with us. I can't even explain how joyous it was to see her. It's always hard when our Japanese friends leave knowing we will probably never see them ever again - despite the best of intentions, so to wrap my arms around her was most emotional!! (The Japanese do not show emotion in public, but I didn't care! I was overjoyed!) Saiko introduced us to her beautiful sister, Waikako and off we went to ride the first of many trains for the day.

Saiko and Waikako have no idea how they helped to make Christi's dream come true even though we tried our best to explain our extreme thanks and gratitude to them. As soon as we were in the very first subway station, Shayne and I had to laugh at each other saying we never could have even purchased the first train's ticket without these two Japanese angels on earth escorting us!!!!! (They refused to let us pay for any of the train tickets and unlike in New York, children have to pay for subway tickets here.) Saiko flew in to Tokyo just to spend time with us; her sister lives in Tokyo and managed the subways like a pro!! I could not believe how confusing, nor how clean, their trains were. It was also surprising to discover that some of the trains were private and others were public - increasing the complexity, in addition to the distance that had to be walked and the stairs that had to be climbed when changing trains. It's amazing that it's such a popular way to travel around Tokyo. (Nor could I believe what wonderful playmates these two women were entertaining Christi and Shayla during the long journey. They are so delightful! The girls had a blast!) Yes, they really do have white-gloved men who shove the jammed crowds into the subway cars, but fortunately they were not around as the crowds were very light on our day of subway riding. After two hours and many steps and train switches, we arrived at Sanrio Puroland.

Sanrio Puroland is an amusement park for all of the Sanrio cartoon characters. Our girls only knew about and loved "Hello Kitty" prior to our visit, but now they know some more. This state-of-the-art park is huge, but what makes it really unique is that its four stories are all INDOORS!! Being here in the tsuyu (rainy season) and in the summer where it's hot and humid, the indoor park was most welcomed. We rode the rides, viewed the attractions, ate lunch, went to face painting and saw some awesome shows. Even though the language was in Japanese, there is something universal about darling, sweet cartoon characters that make it easy to understand the shows' concepts. It was nonstop smiles and excitement for the girls. Our Japanese friends were tremendous with the children. Shayla and Christi preferred them to us and we couldn't have been any more pleased to follow behind and take it all in. Awed by the magic of this venue, the girls danced with excitement the entire time they were awake. Christi and Shayla fell sound (I mean SOUND!) asleep about 3:00 PM and then NEVER woke up the rest of the day or night. Also, at Sanrio Puroland, Saiko and Yaikako's other gorgeous sister (Yariko from Tokyo) and her darling and spirited four year old son (Shogun) arrived. It was fabulous!! I'm so glad we got to see these three wonderful sisters who've captured our hearts.

We said our goodbyes (facing each other until completely out of sight - very important in Japan - a sign of respect, I think) to Yariko and Shogun at the train station and then went off with Saiko and Yaikako - not exactly sure we were going, but knowing we were going. (Shayne and I are pretty good about reading each other's body language so we exchanged glances of "this is so fun and yet so funny".)

After about an hour of subway riding, we exited the train station and found ourselves in downtown Tokyo carrying the sleeping girls over our shoulders. We went to an incredible, true Japanese style restaurant where we also met up with Yaikako's friend (Makoto) and another couple; the gentleman (Brian) was American and an awesome translator for us all. We removed our shoes and sat down on the zabuton (cushioned mats) on top of the tatami (straw floor). The dinner experience was absolutely tremendous. "Itadakimasu" was said before dinner (to show thanks and appreciation for the meal). Our meal consisted of: quail eggs, jellyfish, roasted turkey, tempura shrimp, tofu, rice balls and the list went on and on. This wonderful experience was a highlight for Shayne and I. (The girls never woke up! They basically slept under the low table we all sat around and they never even knew we were there. Jet lag!!!) I cannot even explain how much Shayne and I enjoyed this fine cuisine and the fellowship offered by this intimate Japanese style of dining, nor how thankful we are. Again Saiko would not let us pay, despite our insistence, stating that in America we never let her pay so she was returning her thanks and appreciation. Amazing! Things are so much more expensive here than in Ohio; I'm sure that meal for so many of us cost a small fortune.

During dinner we learned that the American gentleman, married to a beautiful Japanese woman, is a clergyman. Please visit Brian's website at http://brian.aez.jp (Bible Discussion, Fellowship, Songs). To end the evening, as we all sat around the low table on the tatami (straw floor) we joined hands and Brian led us in prayer for Christi's healing. First, he prayed in English and then as he switched to Japanese tears fell as I thought this has probably never happened in this restaurant before and I wonder how many people Christi has brought closer to God as a result of her cancer. I also reflected on the fact that previously Shayne had explained to them that MSKCC had told us that they've never had a kid in Christi's situation make it into remission.

In Japan, less than 1% of the population is practicing Christians so to have this happen was quite profound and overwhelming for me to comprehend. I also remembered that Saiko (like every Japanese person we have hosted) had never been in a church before until we took her with us in Ohio. During the dinner, we shared several stories about the goodness we have witnessed in people and how Christi has touched people's hearts in different ways. After which one of our Japanese friends said something unintelligible to us. After several attempts, the bilinguals in the group translated it literally as "this washes my heart" no they decided that was not quite it "cleanses the soul" was finally the figurative translation.

Next they wanted us to see some of the brilliant and vibrant city of Tokyo, so Makoto got his car from parking and we went with the men for a sightseeing trip on the way back to our hotel, while the three kind and beautiful Japanese women followed behind in a taxi. We were able to see the famous Tokyo Tower as well as the world's largest Ferris wheel and the fashion district, the most fashionable area of the city – if not the entire world. Japan, a country the size of California, has the second largest economy in the world. Our tour of a lifetime was enthralling! (Thanks, friends!)

It was a most fabulous day for which we will forever be grateful. Back at the hotel, I jokingly said to Shayne, "I can't believe the things we get ourselves into." He joked right back saying, "What? Ya mean fly half way around the world and sit on the floor eating with chopsticks with complete strangers and loving every minute of it?" Yes, that was exactly what I was thinking – not to mention getting to ride Tokyo's subways and walking around in Tokyo Station (The equivalent of New Yorks Grand Central Terminal but much larger). Weve been so blessed!!!! The next thing we knew as we sat there reminiscing about the wonderful, blessed day our hotel room phone was ringing. It was Brian, translating for Saiko and her sister. They wanted to go to Disney Sea with us the next day if we'd like company. What a thrill!! We were very happy and slept well - for about five hours until the girls woke up about 3:00 AM. (Jet lag at its finest for our precious little ones!!)

On Sunday, Make a Wish had arranged for us to go to Disney Sea. Christi had located this while researching her wish trip and requested to attend Disney Sea, which is the only one like it in the world. I'm so glad she did. This park is the best Disney park ever!! It's an ocean/water theme. (Little Mermaid, 20,000 Leagues Under the Sea, Pirates, American waterfront, Mediterranean area style, Gondola boats, etc., etc.) It is less than two years old and is absolutely tremendous. ABSOLUTELY tremendous!!! Christi and Shayla were thrilled to be there with Saiko and Yaikako.

Each little sister had a sweet foreign playmate for the day. Riding the rides was never so easy for Shayne and I. These great Japanese friends come to find out were worried that we wouldn't be able to manage the park due to the language barrier so they wanted to join us to help. (They are too sweet!) We found we did come to depend on Saiko for translating for food and for notifying the Disney Greeters that Christi was on her Make a Wish trip and that she needed to go to the front of the line without waiting - that amazing Make a Wish staple in Orlando is also endorsed here. Disney Sea's website did not come anywhere close to doing that fine property justice. The rides were breathtaking and the Disney Sea shows captivating. We had the most enjoyable day despite the constant mist of a day spent in Tokyo during tsuyu "rainy season". As the evening fireworks streamed down the sky, tears streamed down my face when I realized that two kind Japanese women standing behind me were holding their umbrella out over Shayla and I to help keep us dry while the rain fell upon them. I just couldn't shake the goodness of God's people experienced here - a half a world away from home. God's people are great!

Monday found the girls awake at 4:00 AM (Still trying to adjust their bodies to the new time zone.) and after the girls and I ate a 6:30 AM hotel breakfast (fresh fish every day and Christi is now a pro at using her chop sticks). We left early for Tokyo Disneyland - celebrating its 20th anniversary this year. While very similar to both Disneyland in California and Magic Kingdom in Orlando, there were still noticeable differences for Christi to compare and contrast. Without a doubt, Thunder Canyon roller coaster was her favorite of the day. Shayla's highlight was (again) chasing Chip and Dale all over the park and I think Shayne and I enjoyed the afternoon parade the best while both girls were selected to go out into the street and dance with some of the characters during it. We were extremely grateful that Japan's Make a Wish Foundation had also arranged for Christi's name to be on the list so that she did not have to wait for any of the rides here either. The crowds were very light, but it was still nice for the Disney workers to bow to her and to take her right in to immediately board the amusements. And the wonderful Tokyo Disneyland's workers were absolutely joyous when Christi would bow to them and state, "Alligato gozaimasu" (Thank you very much!!) before and after each and every ride. For Christi's final ride, she selected an evening boat ride through "It's a Small World After All." She immediately put her head on my shoulder and together we started singing in English. Soon it dawned on me that I was the only one still singing; Christi had fallen fast asleep on my shoulder - a fitting end to our trip to Tokyo Disneyland. I carried her out and lifted her into her carriage to ride back to the Sheraton hotel. Christi and Shayla were joyous the entire day and loved every minute of our time spent there. It was a tremendous and wonderful day with memories we'll forever treasure. (Thank you, Make a Wish Foundation!)

The girls have learned so much about the polite Japanese. They know not to point because it is considered very rude, but instead to extend their hand upwards to indicate what is meant. Also, they've learned when handing someone something to politely present it with two hands. I'm sure they will resort back to tossing things to one another, but that too is considered very rude here.

As we walked back into the hotel I greeted one of the bellhops with "o-yasumi" and "sayonara" (Goodnight! and Goodbye!) He said, "Do you speak Japanese?" I laughed and said "sumimasen" (sorry) in yet another weak Japanese attempt. At the park yesterday, one of the Disneyland Greeters asked Shayne and I if we were from Tokyo as we attempted to use some Japanese (beginner) phrases with her. That really humored us and we were so flattered. (We wouldn't last a day here on our own!!!)

Once back in the hotel, Shayne took off to try to use a hotel's computer somewhere to get the email from Dr. Kushner about Christi's test results while I tucked the "sleeping Disney princesses" into their little beds here at the Sheraton and paced the room until he returned. Soon Shayne returned to tell me that he found a place to check our email and he said that Christi's bone marrows are still positive for cancer (Ugh! Ugh! Ugh!) but that her MIBG scan showed the last two rounds of 3F8s/beta glucan showed improvement on decreasing her disease (YES!). Nothing was mentioned about the HAMA test nor her urine markers. Dr. Kushner asked how we could best discuss the next treatment. Shayne responded back asking for the team's recommendation and if more antibodies were an option. (We really don't want to put her through high-dose MIBG treatment if we can avoid it by doing something less destructive. If the antibodies are working, why not continue them until their effectiveness weans too like the chemo did?) When we figured out the time difference back in America, Shayne called MSKCC; however, we miscalculated the time by one hour and didn't catch Dr. Kushner. We shall try again at the earliest opportunity.

We sing God's praises for keeping Christi's disease stable and not showing signs of progressive disease at this point. (I was so so so worried about a new spot I thought I saw on her skull, but Dr. Kushner's email didn't say anything about new disease so I think that did not happen. YES, Christ !!!!!.) We continue to pray for guidance in the NB team making the best decision for a next step in treatment that may get Christi to a NED status despite all odds. We thank you all for your love, your prayers and your continued support along Christi's journey. We have been so blessed and we are most grateful, deeply humbled and very appreciative. Alligato! (Thanks!) Sayonara! (Goodbye!)

Love,
Angela

Christi's Joke: As we were entering the Haunted Mansion ride at Tokyo Disneyland yesterday Christi pointed to the gargoyles and said, "Look, Mom! How eerie." I said, "Yes, honey. Keep walking." She said, "No, Mom. Look! Look how 'ear-y'", pointing out the oversized ears on the statues. (Good one, Christi! You got me!)

What's Next? Today we will fly out of Tokyo's brand new airport (Hanenda - which is built on an island and is actually sinking by mistake!!) to Hokkaido (northern Japan), which is one of the busiest air corridors in the world. Totally wild to us is that

EXACTLY 150 years ago Commorore Perry opened diplomatic relations with Japan for the first time in two hundred years!!! (Christi's Make a Wish application asked to take the train to Sapporo to see more of Japan; however, we didn't know it was a 14 hour train ride. Thanks to Make a Wish - we'll have a one and a half airplane ride instead.) Christi is hoping to be able to see Mt. Fuji from the airplane. Miyuki will meet us at the airport in Sapporo and take us to the Prince Hotel where we're not sure how long we're staying; Mika has arranged a few things for us when she gets back to Sapporo, but we're not exactly sure what. Anyway, the sweet Miyuki, who is coming to the airport to take care of us this afternoon, stayed with us through Heidelberg College's Student Exchange program in 2000 and then spent a bit of her vacation holiday with us over Christmas and New Years in 2001-02 even going with us to Phoenix, Arizona to visit with Shayne's sister and nephew. We are thrilled to see the wonderful and charming Miyuki this afternoon!!!!

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