Thursday morning, July 10, 2003
A Sleepless Night
Tomorrow we'll sit while the bangs and clicks,
Tomorrow our lives could continue on course,
Tomorrow we hope that the treatments have helped,
Tomorrow our lives could change again
Thomas Team thanks to our incredible friends for a fabulous weekend of camping in Pennsylvania!!!!! Our terrific friends prepared for us the most wonderful experience at a tremendous campground they located in Pennsylvania. Tall trees, home made soup, s'mores, fishing, swimming, a hay ride, wild "bike" riding, water balloons, and of course too many stories about Shayne and Tim in elementary thru high school were told while sitting around the campfire!!! (smile) It was the perfect release for what was ahead - testing week. Before we left for camping one of our awesome four nurse practitioners told me to be careful with Christi and to use insect repellent. Well, I reassured her we were doing more than that - we were traveling with our very own Registered Nurse!! (Thanks, Denise!) We had a terrific visit. You and your precious children are so lovely. Next time we'll have to share funny band and cheerleading stories to try to compete with our husbands' great tales! THANK YOU BOWERMANS!!!! We love you!
The poem at the top of this morning's journal entry was written by a father of a child who is currently in remission. While I can't even imagine ever getting to that point, I can relate to what he wrote about in his poetry and wanted to share it for the many cancer parents who tell me they read my journal entries. Without a doubt, these test results determine everything! I keep reminding myself of Psalm 43:5 "Put your hope in God."
Monday found us back in NYC where Christi waited (so patiently I must add!) nearly five hours for her bone marrow tests. (She definitely learned patience from her father, not her mother. I was going crazy! I think I spoke with everyone in the waiting room - including those that don't speak English (hee hee) to help me pass the time while Christi played in the wonderful playroom with the incredible volunteers and staff!) There was quite a back up and Christi was sooooooooooooooooo hungry - not being allowed to eat due to the sedation. They put a sticker that said, "I CAN'T EAT." on her and she really wanted a piece of the birthday cake that was being shared while she was in the playroom, but unlike her mother - she resisted. After her tests, she asked to go to the cafeteria where she picked out a large selection of foods. However, before she took her first bite she ripped off the apostrophe "T" from the word "can't" so that her sticker then read, "I CAN eat!" What a hoot this kid is! What wit!!! She is sooooooooooooooo funny!
The same day Shayne was a parent chaperone (and the only male one) on Shayla's preschool's field trip to the Children's Museum of Manhattan. He said the teacher must have thought he couldn't handle a lot of children as she gave him the smallest group. Little did she know what he did at the Neuroblastoma Conference when he took most all of the kids out into the hallway to play Simon Says.
Tuesday afternoon we still had received nothing from the Make a Wish foundation despite the fact we were told that a package was overnighted last week to NYC. We were really getting concerned, so Shayne called the Northwest Ohio Chapter because they made all of the arrangements and overnighted the box. I was preparing to do laundry, when I heard him in his always calm and polite way say, "It's lost?" Yep! He was told that indeed it was lost, but they were tracking it and hopefully it'd arrive soon. (Soon - yes we needed those airline tickets and some ca$h since our flight was leaving in about 36 hours.) I worried all day that her wish trip was going to all fall through and be yet another set back for Christi.
Tuesday was a really tough day for Christi. The IV that was inserted in her arm the day before for her bone marrow testing wasn't permitting a blood flow return despite the fact it was flushing just fine. After forty five minutes of two awesome nurses trying their best, we gave up and went down for her MIBG isotope injection. Christi patiently played Gameboy (Thank you Seneca East Girl Scouts!) for an hour waiting for her turn as they were also running behind. I'm so thankful they can always get the MIBG isotope here so I really didn't mind waiting at all. Next, it was back up to the third floor's IV room again for her HAMA test blood draw. Again, no luck with the IV so that was removed and a regular needle was used again. She just hates sticks so bad. When I started to cry myself I put my forehead down on top of her head. (She always sits up on my lap when they do her sticks.) She suddenly started laughing at me and joked, "Hey! Don't use my head for a tissue!!" and "Why are YOU crying? They're sticking ME!" That definitely broke the thick tension and had everyone in stitches who was gathered around her trying to get her blood drawn. Those wonderful nurses are so kind! I absolutely love every one of them to pieces. They have such patience and talent! Very impressive!!! I don't know how they do what they do each day - even though they say the same thing to me. It's definitely a team effort in the world of childhood cancer.
Well, I shouldn't have worried. Three sweet, sweet, sweet Make a Wish volunteers from New York City, came around 8:00 PM on Tuesday night with the very generous package contained the trip of a lifetime. (Come to find out they were just as worried about the lost package as we were!) They presented Christi with her trip - a tremendous blessing prepared for her by God's angels on earth. It looks to be the most fabulous trip one could ever possibly imagine. Especially for a little girl who was supposed to start her Japanese language lessons last school year but she learned to speak fluent "Cancer Language" instead. We're going to try to put all of that behind us as we enjoy and treasure every minute of this unbelievable trip. We will forever be grateful!!!
Yesterday was Christi's morning MIBG scan. It's a terribly long test. (About 1 1/2 hours of being perfectly still on a hard table and being strapped down in a cold tunnel. YUCK.) She did great! She only let tears slide down her cheeks at one point when she mumbled, "How many more minutes?" There were 25 minutes left. "Just one Cyberchase show" was my response. (That's her favorite TV program - a cartoon about math on PBS. Great show!) Anyway, during the scan I read half of the wonderful chapter book "Homer Price" by Robert McCloskey to her and I plan to finish the remaining 75 pages today on the plane. Regarding her MIBG scan, I'm far from a doctor, but the cancer in her legs and pelvis looked (maybe) a bit better, but there may possibly be a new spot on her skull. It was very faint and perhaps it was nothing, but a small area lit up there that I do not recall ever seeing before. Again, I'm going to "try" to put that aside along with everything else and deal with the trip on which we're about to embark and wait until we receive an email from Dr. Kushner with the official reports of the various tests and the suggestion for her next treatment.
Congratulations to Larry Wagner of The Old Fort Bank-he acheived retirement this week. Larry was key to pulling together the Christi Can Campaign. We certainly appreciated his enormous effort. The retirement is a painful reminder to Shayne that he is no longer a part of the organization and will not take part in the changes that will follow. We wish Larry and Kathy the very best!!!!
God's great blessings to you all! Please take care of you and yours and enjoy your weekend and upcoming week!! Best wishes and much love and happiness to you all!!!!! Enjoy!!
With great thanks, love and appreciation,
Christi's Jokes: (She got on a "tree kick", when I told her to tell me some jokes for this week's journal entry. I never know if she makes them up or memorizes them, but she sure loves to tell jokes. She whipped these off one after another as fast as I could type them this morning.)
What does a tree say when you yell at it? (You're barking up the wrong tree.)
What's a tree's favorite drink? (ROOT - beer!)
What does a tree say when you meet it? (Don't worry. I bark, but I don't bite!!)
How do trees move? They leaf. (leave)
How is a tree better than a dog? (It's got more bark!)
What's Next? We are scheduled to be picked up in a limo at 11:00 AM here at "The House that Love Built" (aka Ronald) to begin Christi's Wish Trip to Japan - all compliments of the Make a Wish Foundation. We will forever be grateful!!!! We will have a very, very, very llllllllllllllong flight, but thanks to sweet friends, we have some DVDs in addition to computer games, books, snacks and art supplies to help entertain the girls and Shayne purchased a back up battery for the computer so the power should last for ten hours - more than half of the flight. I plan to finally do some reading that has nothing to do with cancer.
We will stay in Tokyo for four days - getting to visit with Saiko and her family as well as visiting Tokyo Disney and Disney Sea and possibly the Sanrio (Hello Kitty) Amusement Park. Then we will fly to Sapporo where we will visit with Mikyui. Next, Mika and her Mother and brother will take us to a Japanese hot springs and they have a few other things planned. We're very excited!
Finally, The Make a Wish Foundation permits you to extend the wish trip on your own; therefore, I asked if we could stop in Hawaii for a few days to help break up the very, very, very llllllllllllllllllllllllong flight. (Not that nearly 20 hours with active and talkative six and four year olds doesn't sound like a good time, but............smile.....) Anyway, using hotel frequent stay points acquired over the years, we will use them to spend four free nights at a huge resort on the Big Island of Hawaii before returning to New York. In Hawaii, Christi will get to "swim with the dolphins" compliments of the Hilton's Dolphin Lagoon and Shayne will get to accompany her on this unbelievable adventure. Christi calls swimming on Daddy's back "swimming with the dolphins" so I thought it best if he be the parent to accompany her. He's also a fabulous swimmer, unlike Christi's Mommy who doesn't like to get her hair wet or take out her contacts. (Thank you, Hilton Resort's Dolphin Lagoon for the most kind and generous treat!!!) Shayne has read some interesting things about the amazing healing power of dolphins. (ie. cancer patients going into remission and autistic children speaking for the very first time. Hey, quit laughing, it's worth a shot and Christi's THRILLED about the adventure.) We've been so blessed!!
We have planned for Dr. Kushner to email us the test results as soon as they are in (bone marrows, urine markers, HAMA and MIBG scan) as well as the NB team's recommendation to us for future treatment. Our wonderful NB team will make their recommendation to us after all of the tests results are in and after they have had their scheduled meeting to discuss Christi. Hopefully, we will be able to send/receive email in Japan and that should give us more time to ponder their recommendation for the next course of treatment for our beloved daughter. (Interesting to note - in Japan Neuroblastoma is treated almost exactly the same as it is in the USA, but I don't know what they try with their kids who don't respond to traditional treatment like Christi.) As always, we pray for God to grant them the wisdom needed to make the best decision for Christi and to somehow let her have a full and complete healing despite all the odds. "Come and pray to me and I will listen to you." (Jeremiah 29:12) Thank you, sweet friends, for joining us in prayer for good test results and for a treatment decision that will somehow get Christi to a NED (no evidence of disease) status.
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Shayne & Angela Thomas: email@example.com