Journal Entry

Sunday morning, May 15, 2005

Wow!!  The girl I didn’t really think would live to see age “6” just celebrated her “8^th” birthday.  THANK YOU, dear Lord!!!!!!!  And thank you dear Christi Crew for checking in.  All is well and we feel so blessed!  Without a doubt, we are!!!

Christi and two friends celebrated the 8^th birthday in a “pink and funky” way by going to Libby Lu’s.  It’s a little girls’ dream store where they do your hair, fingernails, make up, costumes, etc. and have you dance around the store – all with lots of glitter, of course!  Nearly everything is pink at Libby Lu’s!  (And it seemed like it was just a big pile of glitter by the end of the evening and the girls couldn’t have been more delighted.)  My deepest thanks to Linda for being “game” and making it all to happen!  THANK YOU!!  On the way back to Linda’s car I overhead the girls talking that they’d use their rock and roll headsets to put on a broadcast about Christ’s birthday party.  One girl acting like a reporter said, “This is a birthday party for Christi Thomas, a cancer survivor.”  And Christi piped in with, “I’m not a survivor, yet.”  It nearly took my breath away as it taught me she must know a lot more than I think she knows about this beast which has drawn us all together- a beast called cancer.  Ugh!

Christi's 8th birthday really arrived on Thursday, May 12th with me softly singing, "Happy Birthday" until I witnessed a precious little smile form on her face from where I stood at the foot of her bed.  Prior to my singing her awake, I was on my knees by her bedside as I have done countless times - this time in prayer of thanksgiving for the fact that she actually made it to eight!  I truly never thought she's make it to eight when she was only five and diagnosed with this horrible cancer.  Many times I have dreamed that she was diagnosed with another type of cancer for which there is a cure then my reality brings me back to the fact that sadly it indeed is neuroblastoma - the worst of the worst in terms of survival, a cancer unlike some others, a cancer for which there is no cure.  Of course I believe it is a miracle that she is now “8”!  Praise God!  Of course, eight isn't enough for me; I had to go and ask our Maker for her to make it to nine too, but I know it's not my decision.

At school, she passed out her favorite cookies that we made together the night before and after school we went to our family's favorite photo store "The Picture People" to have her 8th birthday pictures taken.  As always, they did a fabulous job of capturing the girls in priceless photos I shall forever treasure.  It was hard to select which poses I liked the best.  And then we took the finished photos home as they were ready in an hour!  Amazing!  I'm certain some will appear on CT's website very soon.  Thank you, to the Picture People!!  (They are a nation-wide chain so if there is “The Picture People” story by you - check it out.  You won't be disappointed!)  Finally, the big day ended with a merry-go-round ride.

We also had a small family birthday party for the “Crea – 8 – tive” one yesterday.  It was delightful.  So happy am I that my sister and her family was able to attend as they live about four hours away from us.  We dearly treasure the love and laughter they give us.  The party was a “smashing hit” and it was fabulous to get together and catch up with everyone last night.  We are so lucky to have such tremendous family and friends.    

Christi again had fabulous blood counts at the hospital recently.  I think this may have been the first time that all of her blood counts drawn from the port inside her chest were in the “normal” range in years.  That can only be a good sign!  They were: 4.7 white, 11.8 hgb., 170 platelets, and a 2700 ANC.  The LDH which measures tumor activity was 207 (100-190, normal).  She currently has a few more days of ABT – 751 to take in this 13^th round and then she’ll get seven days off.  She’s done really well.  One day she “tossed her cookies” after taking it and we felt horrible that we didn’t happen to have any extra around to give her the day’s chemo, but I guess we should just be thankful that that was a rare occurrence. 

MEMORIES OF THE MONTH:

Shayne: 
*When Christi gave Shayne his birthday present on April 19^th, it nearly moved him to tears.  Her gift was a lovely piano song she wrote for him.  Piano playing continues to be her passion.

*Shayne also participated in a sprint duathalon (Bike and Run) at the Olentangy Caverns with “Uncle Jeffy” in early May.  He sweetly gave the girls a high five hand slap when he raced passed them – so sweet!  After the race, we all explored the caverns together.  Very cool!

*He also took the girls to the “Girl Scout Father / Daughter Prom” – following the high school’s prom while the decorations were still up.  All the girls put on their fanciest dresses. (Christi & Shayla still had dresses that were all thanks to MSKCC’s prom two years ago in NYC.  Thrilled was I that they still fit!  Wow!  I’m going to write MSK to tell them – and to let them know we’re heading to NYC for a visit this summer).  While they had a wonderful evening of food, dancing and festivities at the prom I stayed at home and worked on a paper for my latest OSU class.

*WFOB's Live Radio Broadcast - Poor Christi had taken her ABT that morning as always and I was hoping she'd get through this 13th round without her "loosing her cookies" but that didn't happen this month either.  She had taken her ABT the morning she was to appear with Shayne on WFOB's live radio broadcast promoting the Poker Run and her Lemonade Stand.  Shayne said she lost it as soon as she got out in the parking lot just before she went in and didn't feel very well during the entire 60 minute broadcast.  (In complete Christi style she blamed Shayne for his “bad driving” though instead of the chemo – what a hoot!  She wants me to drive next time.  Funny!)  Well, I've listened to the radio show and I thought she did a fabulous job - reading "Alex and the Amazing Lemonade Stand" to the audience.  Shayne was absolutely wonderful too. (No, I'm not bias, smile.)  Doing the WFOB ( Fostoria local radio) show was still a very memorable and special moment of the month.

Angela:
*Having my Mother over for dinner for Mother's day was great.

*Celebrating Christi’s 8^th birthday party with Linda and the girls at Libby Lu’s was certainly a highlight.

*Getting together with family for Christi’s birthday was a blessing.

*Professionally, I had a really neat experience take place.  A most wonderful and talented woman - friend and awesome college Professor asked me to be a guest speaker for her education class of graduate students taking her Language Arts class at the Ohio State University.  I’ll admit I was nervous wishing it were at least an undergraduate class, instead of Master’s degree students, but all went fine and I really enjoyed the opportunity to share what I do in the classroom with my students with some other teachers and soon to be teachers getting their Masters in Teaching at OSU. (Thanks, Mary Jo!!)

*Receiving a special rosary from the Vatican :  A sweet Prayer Warrior and Catholic School teacher called that she had something to bring to us.  When she arrived, she explained that she had won the rosary and when she saw the letter from the Vatican on Christi's website she knew that Christi was the very person who needed the rosary.  (Thanks, Lisa!)

*Having our entire Thomas team plus Grandma Nonee and Paw Paw Joe in our living room - all literally up on our feet cheering and screaming for #12 -  "Afleet Alex" during the exciting Kentucky Derby is a great memory of the month.  Thanks to the Scott family for letting us know ahead of time about the awesome horse owners who agreed to give Alex's Lemonade Fund some $$ if Afleet Alex came in 1st, 2nd, or 3rd and it was a great 2nd place finish.  And Liz Scott was just as stunning as ever in the most awesome "Kentucky Derby style" lemonade hat a local florist made for her.  What a hoot!  Goooooooo, Liz!  (More on Afleet Alex at the end of this journal entry, #143. – hee hee)

*Enjoying the beautiful weather and playing the board game "Life" on the front porch with Christi.

*Learning that one of our wonderful friends from the Metropolitan Museum of Art in NYC wrote a song in honor of Christi called “Little Giant”.  I believe it is a jazz piece and it was performed for a New York audience this month – very cool!  Thanks, Nitza!!

In reflection, as the end of the school year is rapidly approaching, I pause in thanks and praise that Christi only missed one day of school this year due to illness and she only missed about 8 days for all of her hospital trips to CHOP with Shayne.  As the school year began, I begged God to just allow her to be alive by the last day of school.  I think she made it!  For a little girl living in continual active treatment for a cancer for which there is no cure, I think that's pretty impressive!  We have been richly blessed by His goodness.

Thank you to the sweet, incredible folks who sent birthday cards, emails, treats, etc.  You've continued to amaze us with your continued love for this little sweet pea and we shall forever be grateful for your support!!  THANK YOU!

CALLED HOME:  Mason from Iowa who was waiting to get started on the ABT after much delay never started the chemo, but instead returned home to spend his eternal life with Jesus.  We lift his family up in prayer.  And in Christi’s Clubhouse another friend has earned her angel wings.  Alexia fought a very brave and courageous battle until the very end.  This little gal just wouldn’t quit!  She even went to the zoo on a Sunday afternoon and then took her last breath after midnight on a Tuesday.  This disease is a horrible beast!!! We MUST find a cure!  I’ll always remember Lexy flitting around the hotel in Chicago at the NB conference last year.  Our thoughts are with their families and the many others who have lost their precious loved ones.

Thanks for checking in.  I’ll update again next month in mid-June – after the Poker Run and the Lemonade Stand.  Please join us if you can.  We’d love to see you! Here’s wishing you and yours a healthy, happy and peaceful summer!  Thanks for everything!!

With peace and gratitude,
Angela

Christi’s Joke:  What is a baby’s favorite website? (Google, google, go

What’s Next?

Shayne and Eric (Webby) will be racing in the Alan Boos Duathalon this coming weekend.  The race is in memory of Alan, a young man and incredibly talented athlete from Tiffin who sadly left this place we know as earth entirely too young.  Our family will also be attending the benefit spaghetti dinner the evening before the race.

Saturday, June 4^th “3^rd Annual Christi Thomas Poker Run” with all monies to benefit “The Make a Wish Foundation of Northwestern Ohio”.  We hope you can join us – whether you have a motorcycle or not!  Registration will begin at the AmVets in Tiffin at 10:30 AM with motorcycles scheduled to pull out – first riding through Tiffin , at noon .  The cost, which includes the official tee shirt (It’s GORGEOUS!  Thank you, Rush Business and Printing!!  The shirt design will be the full back just like that shown on Christi’s home page - printed on a brown shirt, gorgeous!!), a poker hand for the game and prizes and BBQ chicken dinner is $20.00 for one rider and $35.00 if two are riding on one bike (two shirts, two dinners).  The motorcycle ride will go to: Grates, Fremont , Wharf, Port Clinton, and Harrison ’s, Bettsville before returning back to Tiffin to the VFW hall for the BBQ dinner.  While we do not own any motorcycles, we will be at the pre and post events and the girls are hoping that they will get to ride on a motorcycle in the parade through town since they had so much fun last year.   For those who may be just interested in stopping by the VFW in Tiffin for the chicken BBQ dinner or to pick up carry out dinners, the cost will be $6.50 starting at 4:00 PM .  All proceeds will be lovingly donated to Northwest Ohio ’s Make-a-Wish Foundation – granting wishes for children with life threatening diseases and creating memories for families which can never been taking away from them.  A huge THANK YOU to all the volunteers and businesses that continue to honor Christi through this great event.  Your kindness will never be forgotten!

Friday, June 10^th “Alex & Christi’s Lemonade Stand” at the Old Fort Bank – Westgate Office (beside the new Taco Bell and across from McDonalds).  Please join us on “ Lemonade Lane ” anytime from 11AM to 3PM .  All monies to be sent to “Alex’s Lemonade Stand Fund” – raising money for pediatric cancer research one cup at a time.  Yes, it’s a shame that these kids have to hold lemonade stands to hopefully fund their own cures, but yes that is the sad reality of it.  This year’s lemonade stand will be extra special as we honor Alex’s life and work.  Christi is still alive do to experimental treatments funded through funds from Alex’s Lemonade Stand and we shall forever be grateful to all who’ve helped by donating to a great charity!  THANK YOU! 

She’ll finish this #13^th round of oral chemo and then take one more.  Then we plan to be heading to NYC for a quick vacation visiting awesome folks and place in NYC and then down to Philadelphia in late June or early July for her tests/scans to check the status of her disease.  Prayers are always welcomed for Christi and all of those battling for their lives.  At this point we’re feeling very well, but know that our nerves and fears will again return as that stressful time of tests and scans nears. Thank you!

Alex's Lemonade is fast out of the gate
A child's legacy is already a winner at the Derby .

By Marc Schogol

Nearly a year after Alex Scott's death from cancer at age 8, Alex's Lemonade Stand is still up and running. In fact, it will be at Saturday's Kentucky Derby in Louisville , Ky.

A horse coincidentally named Afleet Alex is one of the favorites, and the horse's Philadelphia-area owners - who already have contributed substantially to the charity to fight childhood cancer - promise a share of the $2 million purse if Afleet Alex finishes in the money.

In addition to rooting for Afleet Alex, Liz Scott, Alex's mother, plans to be at Churchill Downs, too - running the lemonade stand at the Derby's invitation while husband Jay stays at home in Wynnewood to deal with other charity business.

Since then, he said, Afleet Alex has kicked in about $87,000 to Alex's cause - including $37,000 raised yesterday during a charity auction at Churchill Downs. If Afleet Alex wins the Derby , Zacney added, "I'm sure" there will be a bonus.

Alex's Lemonade Stand has given out more than $1 million in grants to Children's Hospital of Philadelphia , where Alex was treated, and to other research hospitals to enable them to greatly expand the number of children receiving experimental cancer drugs.

Having exceeded Alex's goal last year of raising $1 million, the Scotts have raised the bar this year, all the way to $5 million. So far, they've received about $400,000 in pledges and donations, and they are working on plans for a thousand lemonade stands nationwide the weekend of June 10 to 12 and 4,000 more during the rest of the summer.

The story of Alex, who was diagnosed at age 1 with an often fatal form of childhood cancer called neuroblastoma, is the inspiring tale of a little girl who wanted to do something big to help others like her.

Although she was getting national publicity, and even though hundreds of lemonade stands were operating nationwide, last year's $1 million goal seemed just a little girl's dream.

But when Alex died in August, the running total was over $800,000 - and Alex knew that Volvo of North America, which set up lemonade stands at its dealerships, had guaranteed to donate as much as necessary to reach $1 million. When the year ended, the total was more than $1.4 million.

 "I still live with a lot of sadness every day, and I always will," Liz Scott said. "Just to have my daughter back, I would change everything in a second."

Auction nets $37,000 at Churchill Downs :
A breeding season with Afleet Alex's sire benefited Alex's Lemonade Stand.

By Mike Jense
Inquirer Staff Writer

The bidding at Churchill Downs kept going up - "thirty-two, thirty-two... thirty-three thousand. Thirty-three, thirty-three? Thirty-five!" - and by the time it was done yesterday morning, $37,000 more had been raised for Alex's Lemonade Stand.

Alex's Lemonade Stand is the official charity of Kentucky Derby contender Afleet Alex, and Liz Scott will be at the racetrack with two of her children, manning the stand Friday and Saturday. Yesterday's fund-raiser for the charity that fights childhood cancer was a live auction for a season of breeding with Afleet Alex's sire, Northern Afleet .

Afleet Alex managing partner Chuck Zacney kept on bidding, but a man in the back of the crowd also kept raising his hand. After awhile, Afleet Alex trainer Tim Ritchey leaned toward Zacney and whispered, "You're bidding against one of the richest guys in the world."

B. Wayne Hughes, owner of Derby horses Greeley 's Galaxy and Don't Get Mad, is supposed to be worth close to a billion dollars, and after he made the winning bid, Hughes thanked Zacney for upping the price. Hughes lost his 8-year-old son to leukemia in 1998.