Journal Entry

Saturday, June 19, 2004

Putting the "Squeeze" on Childhood Cancer

Hello to the Christi Crew!!! For those of you close to Tiffin, I wanted to let you know that Christi & Shayne will be on the "Talk of Tiffin" live, morning radio on Tuesday, June 22nd at approximately 7:10 AM to promote Alex & Christi's Lemonade Stand - raising $ for pediatric cancer research one cup at a time! The radio station is WTTF (1500 AM, or maybe it's 1600 AM) if you'd like to tune in.

Just to update you on 8 year old, Alex Scott's work: She is getting close to reaching her $1 million dollar goal. Her mother emailed to say that so far, they have received just over $400,000. Liz recently wrote, "Alex has lived the past four years on experimental treatments and we know the impact research can have on lives." We are hopeful for the Tiffin, Ohio stand to be able to make a large donation for the work of this darling little gal from Philly we've all fallen in love with. We've invited her to Tiffin; however, her health is extremely frail right now. Christi said that her goal is to raise $100 to help Alex with her $1 million dollar goal, but Shayla said $1,000 is her goal. (So far Christi has received $54.00 and she has yet to pour her first cup. Thanks, Beth K. & Cindy B!) Christi said that there will be no set price for lemonade and no one will be turned away due to inability to pay. (Sounds like she's running for political office, eh?!) Christi said for the newspaper reporter, "Even ten cents is fine. Every little bit helps." (Please keep Alex, this "sweet" little friend, whose lemonade stand funds helped to open this promising new study Christi is participating in - which may be the answer to the miracle we've been asking for, in your prayers. Unfortunately, Alex is really struggling right now with her disease progressing and we are heartbroken to learn of continued bad news and setbacks. God be with the Scotts now and always! I continue to have faith and hope for Alex - who's surprised many again and again during her 7 year struggle with neuroblastoma. Liz, if you happen to read this, please tell Alex that Christi still loves the Hello Kitty canteen she gave her in May. Not only did she carry it all over her birthday party, but she used it all week at Theater Camp here in town and next week plans to take it to Girl Scout Camp. Alex, you are a mighty fine New York City shopper and we love you! We hope your matching canteen is holding up well too! Thanks for all you do to help other kids! We hope your book "Alex and the Amazing Lemonade Stand" is selling well. What a great way to raise money for pediatric cancer research year round! You go, girl!

We hope you are able to stop by Christi's Lemonade Stand if you are in the area on Friday, June 25th from 10:00 AM to 2:00 PM. The Old Fort Bank - Westgate Office is located across the street from McDonald's and our family and some sweet volunteer friends will be out on "Lemonade Lane" wearing our bright yellow Alex's Lemonade Stand tee shirts - donated by Viewpoint Graphics. Our thanks to: the Old Fort Bank, Country Time Lemonade, Hardees, McDonald's, Viewpoint Graphics, WTTF, the Advertiser Tribune and the Attica Hub for their help with Christi's project. She has wanted to do this for over a year and the time has almost arrived!

Christi continues to do VERY well with this second round of experimental oral chemo (ABT - 751). While she's the first child in the world to ever attempt this high of a dosage level and the 29th kid to ever take the drug at all, I think she's still doing fine- great actually, but I'm scared to write that. Things change so quickly in the world of neuroblastoma. Just Thursday we sadly lost a sweet 8 year old female neuroblastoma fighter, Becca, who was free from this beast not so very long ago. As usual it came back and back with a vengeance. Beautiful and brave Becca treated in many places during her five year battle, including NYC. The description her Mother, Theresa, gave of Becca's last bit of time here on earth and what Becca was saying about where she was going next would make a believer out of anyone who does not believe that there is a heaven. Even though Becca struggled and was filled with horrendous pain and suffering for a very, very long time, I find some comfort in knowing that Becca is now pain free, cancer free and exactly where she told her Mother she saw: with the children playing and with her dog who died two years ago. Theresa, words cannot express my sympathy and I'm so so sorry that Becca suffered far too long with no way to get her pain under control despite you doing everything humanly possible. I am so angered. It is sickening to me that our society treats animals in a far more humane manner than we do our dying children. And I will never forget her beautiful sweet singing "You are my sunshine." nor your continued positive attitude through this hell you've lived for years here on earth and I know the nightmare will never be over.)

We have yet to notice any side effects of the ABT. (Well, once we moved back the starting time to morning pills instead of evening pills she's now going to bed at night. Shayne told me it would be like a non coffee drinker, drinking two cups of coffee and then going to bed.) Her blood counts Thursday morning at the hospital were also just fine - low for you or I, but above needing blood transfusions. Of course I checked back to my records of her first counts of the first round of the new phase one trial and sure enough, they were also fine at this point - hitting their high at day #16 and then plummeting from there. Today we're at day #16 out of 21 days of treatment. Hmmm. I pray this doesn't happen again, yet I'm certain I know where we are heading. Blood counts twice per week and a doctor's visit once a week shall continue. Our prayer request is that her counts rise up, up, up!

Christi and Shayla both enjoyed their camps tremendously this week while my class on teaching reading was enjoyable, thought provoking and informative, yet extremely challenging, tiring and absolutely overwhelming at times. I'm really worried about how I'm going to get my other three projects finished in two weeks, but God willing I shall. My deepest thanks to Corrine and Tony for giving me the keys to their home this week. I took the public bus each day, free with my student ID, and it worked out great!! I've been so blessed! When I called home from Columbus one evening I asked Christi if she auditioned for a part in "The Jungle Book". She told me yes and she got the part of the back of the snake. (Oh, I'm glad I was on the telephone because I doubled over and nearly laughed out loud - THE BACK OF THE SNAKE! I guess you have to start somewhere!) With much excitement, she went on to proudly explain, "I have a very big responsibility because if I don't shake the sticks just right then it won't sound like a real rattle snake." (Oh, these teachers and volunteers were tremendous! Thank you to all at the wonderful Ritz theater!) Shayne, Shayla and Grandma Nee Nee went to the Ritz to watch Christi last night and I will go watch her this afternoon and then we'll join the gang up at the Lake at Shayne's Mom's home. I can't even believe that we've been so blessed to be doing all of these "normal" things with this brave and inspiring little warrior! Next week is Girl Scout camp! Never in a million years did I think she'd make it to "Girl Scout Camp!" Thank you, Lord!

Thanks also to other "helpers" this week getting us through while I was out of town. (Vicki H., Laura C., Shayne's Mom, my Mom as well as anyone else I overlooked.) After my Mom's help with the girls she sent me this email so coming from "Grandma" it was precious. Thanks for sharing, Mom!

Angela, when your girls were in the car taking them to camp, I was reminded of you and Tina riding in the back seat together a long time ago. One time you were right next to Tina and she said, "Oh I just LOVE my little sister being right NEXT to me," You said, "I love you too, Tina." In the car, Shayla said, "Do you like me, Christi?" I didn't hear Christi's answer clearly. I think it was a muffled "Yea whatever". Shayla said, " I like you too Christi!" Little sisters sure love those big sisters - Big sisters think the little ones are pests.

We pulled in at the Earth Literacy Center for Shayla's camp first. Christi says, "Whats literacy mean?" Shayla said, "I think it has something to do with litter." Christi responded, "Is Shayla learning to litter?" I had to clear that up.

Since Christi and I had some time before her camp, she suggested we go where daddy goes to get coffee and a snack for her. So I went to the coffee shop across from the court house with a bake shop. "No" she insisted "that was not the one daddy goes to." She wouldn't go in. She said the one daddy goes to has peanuts and crackers. (Sounds like a bar??) So we strolled on down to the river and watched the water and had more in-depth conversations. I learn so much from your girls. Yes, I won't believe everything they say about you, if you don't believe all they say about me. ( Like Shayla falling in the furnace at our house.)

Hope all is well. Love, Mom

Angela here: Shayne took Christi to the "Dairy Mart" each day before camp and allowed her to pick out a 25 cent snack. Mom, I'm so sorry he forgot to tell you that little step. If you ever want to take ME to the bake shop, don't worry, I'll hop right out and beat you to the door!!

Here's wishing you a great weekend! Please drop by the lemonade stand if you're out and about on Friday and tune into WTTF on Tuesday morning - although who knows what she might say! Last time (with the blood drive) she was a bit nervous, but I'm thinking she may be more comfortable now - look out "The Talk of Tiffin" she's taking a "sweet stand" against cancer and she's most likely to summon all listeners to stop by her lemonade stand!! hee hee!

With love and continued thanks,
the Thomas Team Mom, Angela

Christi's Joke: She woke me up this morning saying, "Can you touch your tongue and your nose?" So naturally I tried and couldn't. She giggled and said I can as she first stuck out her tongue and then with her finger touched her nose! Got me, Christi!

Funny from Christi: Last night, Shayne and Shayla went home with Grandma Nee Nee so that we would only have one vehicle up in Port Clinton this weekend. Therefore, it was just Christi and I so I asked Christi to sleep with me so I wouldn't be lonely. (Boy, I missed the girls - and Shayne, so much this week!) When we were snuggling together talking Christi said, "You what's the hardest part of being the back end of the snake? Because I'm the littest one they gave me the littlest costume, but it's way too big so I have to be careful not to trip and fall over it while I'm wearing it."

What's Next? Girl Scout Camp next week! Oh, yeah and more oral chemo, needle sticks to draw blood and doctors visits this week, but I don't like to think about that. But we're really excited about GIRL SCOUT CAMP! I told her that next year Shayla would get to go too. Christi responded, "Only if she sells enough girl scout cookies like I did." (Thank you to the "Grandmas" and to Christi's great Brownie troop and tremendous leader for making this coming week possible!!!)

LEMONADE LANE: Friday, June 25th 10AM to 2PM in front of the Old Fort Bank - Westgate. Hope you can drop by on Friday! If you live far away and still want to make a donation and purchase a "virtual cup" of lemonade, you may send your donation directly to Alex at 333 E. Lancaster Ave #414, Wynnewood, PA 19096-1929 or send it to Christi at P.O. Box 152, Old Fort, Ohio 44861. It doesn't need to come to Christi first, it just needs to get into the hands of scientists who are making new trials available for kids. Checks should be made payable to "Alex's Lemonade Stand Fund" and all contributions are tax exempt to the full extent of the law. The donor-advised Philadelphia Foundation handles Alex's fund. You may also donate through her web site at THANKS!!!