Journal Entry

Sunday, May 18, 2003

When you wish upon a star................................

Thank you all for the most wonderful trip. This has been dreamlike and we're most appreciative! Thank you! Thank you sweet friends, family and strangers - now friends! We've been so blessed! I know of many parents who have lost their children suddenly to accidents and illnesses without having the chance to take their children on a dream trip like this. I will treasure the memories that we made here in Orlando with our family for the rest of my life. This has been the best trip anyone could have ever dreamed of! Thank you all! God's great blessings to you!!!! Thank you!

Christi woke up on her birthday, Monday, to discover that the "birthday fairy" arrived sometime during the night decorating the two hotel rooms. During my usual "middle of the night can't sleep event", I decorated both hotel rooms. Armed with neon green crepe paper, a plastic birthday party door cover and six balloons that Aunt V blew up the night before I set off to decorate thinking of how surprised she'd be when she woke up. She was!!

After opening up the presents she found on the bed next to her and Aunt Vaunie, I coated the girls in sun block and off we went for Magic Kingdom. "Grandma" Donna had contacted Disney and made arrangements to get us into the sold out breakfast event in Cinderella's Castle so that Christi could have breakfast with the princess characters for her birthday. I had no idea that there was even a function like that. It was enchanting, whimsical and dreamlike. Thanks, Grandma Donna! (This awesome woman has definitely earned the title "grandma" and not just former baby-sitter to our family. Shayne and I used to always say to each other "big on love, short on discipline" when she was caring for the girls while we were at work. Somehow our girls could never do anything wrong - just like a blood grandma and I always knew they were in the best of hands in her home!)

Magic Kingdom was absolutely enchanting and dreamlike. Wild elephants couldn't have kept us away!!!! (smile. We loved the Dumbo ride!! hee hee) It was the perfect day and the perfect way to celebrate the great day that God blessed us by bringing Christi into our world - May 12th. I can't believe she's now six. She was not very interested in meeting the characters, but she loved the rides (Space Mountain, Haunted Mansion, Thunder Canyon, Splash Mountain, etc., etc. etc.) I was very surprised that she was into the "wild rides" like that. Shayla, on the other hand, was content to be chasing after the characters - especially Chip and Dale once she learned how to tell them apart.(Chip has the small black nose) The rides were pretty scary for her. She was even scared on "It's a Small World" a most calm and gentle boat ride amidst singing dolls!! Oh my! She still had the time of her life too! It's surprising how different the girls are even though they're so close in age. We'd like to thank our favorite New York TV reporter - ABC's Rebecca Rankin (beautiful inside and out) for providing us with many lunches at Disney World. What a sweet surprise!! (ABC is a Disney company and we really appreciate Rebecca's efforts.)

This super hotel is working out great! It is also the hotel directly beside the one that we stayed at four years ago when the national teachers meeting was here. (Remember Orlando in 1999 my nearly 400 fellow Ohio delegates staying here??!! I'll miss you dearly when you're in New Orleans for this year's annual meeting in July!!) It's been easy to drive around since both Shayne and I were sort of familiar with this area because of our stay here for my teachers convention four years prior. What a coincidence! The Hampton Inn Maingate East staff has been delightful too! They had surprise birthday cake and treats waiting in our room for Christi when we returned back to the hotel following our day at Magic Kingdom. What a surprise to all of us! The kindness and compassion that has been lovingly bestowed upon us has been a tremendous blessing. Thank you all!

Perhaps the only true measure of our lives is how richly we spend our allotted time, and how much of ourselves we share along the way. The many volunteers we've come into contact with at both of Christi's hospitals and at the Ronald McDonald House have shown us they have the courage to cope with every parent's worst nightmare, the courage to risk having their hearts broken, the courage to care enough and to do what's the scariest. Compassion you can't buy or teach, but these unbelievable volunteers live it each week and help us get through life's most difficult times. From the sweet and delightful "Once Upon a Story" folks who bring great literature into the young kids' lives at the hospital, to the beautiful men and women Christi calls "my playmates" at the play room in New York, and to the many individuals who've touched our lives sharing of themselves and their limited time doing activities with the children and families at Ronald, we've been better people simply by coming to know and love them all.

One of the world's greatest volunteers (and Volunteer of the Year for many years at Children's Hospital in Columbus) "stopped by" to visit with us in Orlando. Can you believe it? (We still can't!) The awesome Dave is an engineer who happened to be in Orlando for less than 24 hours for work. We know his busy work schedule and extremely limited free time did not leave him any leisure time, yet this absolutely amazing, inspiring, compassionate, funny and kind gentleman made arrangements to meet with us. (And thanks to his sweet, sweet, coworker - Brian - who came along too! Brian, how did Dave ever talk you into, "Let's go have dinner with some cancer kid's family tonight!!" Your amazing, Brian!) Those two young, great looking gentleman could have done anything in Orlando for the night, yet they searched us out to spend time with us! Unbelievable! Oh, how we long to be back "home" even though Columbus, where Christi previously treated was two hours from home, we still refer to it as "home" and we'd love to be back there. Dave and the fabulous folks in Columbus made our sheer hell a bit more livable. It was great to see him. Dave, you are much too much and we miss you and appreciate you more than words could ever say! Thank you! I've learned through teaching that getting your feelings hurt is an occupational hazard of loving kids, but these volunteers that enrich our entire family's life really have this occupational hazard at a much, much higher level than I do as a kindergarten teacher. At least in my occupation I get to benefit from the fact that children are also experts at mending hearts. Unfortunately, these sweet volunteer angels see much more heartache and do not get to reap the benefits. I hope that they know how much we appreciate them and all of their work.

Wednesday found us on the road traveling about an hour and a half to the Kennedy Space Center. They literally rolled out the red carpet for us. We thank Christie R. for arranging Christi's trip and thank them all for their genoritisty in hosting us as their guests for the day. In addition Christie R. also arranged for Christi to have lunch with Mark Lee - a real astronaut who presented her with some very nice gifts compliments of the Space Center. We were shocked! What unbelievable kindness! The center is HUGE and a center of the highest quality. There was something for everyone. We all had an enjoyable, educational day. PERFECT!

Christi wanted to go to the beach so we went from the Space Center just down the road to Cocoa Beach and had a glorious time in the late afternoon sun. Christi was surprised to find the ocean water salty on her first trip inside the Atlantic Ocean. I think it was a great blessing in disguise that her Broviac broke and had to be removed about six weeks ago. She was not permitted to even get it wet before. I'm also confident that Shayne and I made the right decision not to insert another one as the daily swimming has been magical! She's been denied so much I'm thrilled she can now swim whenever she wants. (I'll be sure to remind her of this great water fun when we're back in New York and they resume sticking the needles in her arms for the week instead.)

One night we were treated to dinner by the wonderful Shawn at Macaroni's Grill just down the road from the hotel. The kindness showered upon our family as we deal with the crisis of Christi's cancer and all that has falling apart as a result, has been so wonderful and inspiring. God's goodness through His people continues to get us through the day and the help with meal costs from Macaroni's was so so so sweet! The girls loved it because that the restaurant where you can color on the tablecloths. Perfect for our little "art princesses".

Thrilled we were that my mother, sister and two beautiful nieces arrived safely! Yippee! It was a treat having Ashley (Christi's big cousin) go along with us to have Christi's blood work done at a hospital here in Orlando. It seemed to take forever; however, Ashley entertained Christi and made the entire three hour trip quickly fly.

Thursday we visited The Holy Land Experience and found it to be absolutely wonderful! No trip to Orlando should be complete without a day spent at this park. The dramas presented were beautiful. It made you feel like you were right there surrounded by Jesus. We also saw the largest private Bible collection in the world. Thank you to The Holy Land for having us as their guests. I learned a ton and had a joyous day at their beautiful park.

One day Shayne and his sister were able to enjoy Water Mania thanks to complimentary tickets. (Thanks, Water Mania) while we again went back to the park. It's been great having Aunt V here, not only for the girls, but I know Shayne has really valued this extra time spent with his awesome sister. She's an amazing woman and we love her so much! Thanks, Aunt V!!

I have certainly enjoyed having my sister here this week too! Disney World is great, but even greater when you're riding the rides and viewing the attractions beside your childhood partner-in-crime. (Thanks for all, Tina! You're girls are the sweetest, smartest and kindest kids around!! What a joy they've been to ALL of us! THANKS!) I'm so glad Mom came along too. She's awesome! I'll treasure these memories forever.

Today Shayne and I sent the others back to the parks while we swam and took care of the laundry here at the hotel. Tonight Shayne and I are off to see Arabian Nights - a dinner theatre experience we are walking too. We'd like to thank Arabian Night's for having us as their guests. I'm really looking forward to spending the evening with him too. We had a great day knowing that the girls were in the best of care. It's amazing because of this crisis that I often forget Shayne's my husband and not just "Christi's Daddy". A social worker at the hospital told us that 50% of the marriages going through an ordeal like this end up divorce. That's not an option for us, but I will admit that it's very difficult to try to have a relationship of any sort with your spouse with the constant tension and constant focus on a child with a life - threatening condition.

This trip has been a dream. We appreciate all of your loving support in making it possible. Thank you from the bottom of our hearts!!

Much love and thanks,
Thomas Team Mom

Christi's Joke: How do bunnies get out? (They say, Please "lettuce" out.)

Christi's Quote: "No one's life is perfect." (Christi's explanation to Shayla when Shayla was upset that she couldn't do an art project quite right because her hands were too little.)

What's Next? On WednesSday morning we will fly back to New York. Christi will have two days of tests. We continue to pray that this treatment will help to rid her body of the nasty cancerous cells. If she has not progressed (more disease than before) we will start her third round of 3F8s the following week for another two week period. Thank you for all!!