Journal Entry


Sunday, December 12, 2004

"Nothing great was ever achieved without enthusiasm."
Ralph Waldo Emerson

Enthusiasm? This amazing little girl is all about that and so much more!!! We've been richly blessed! Thank God for the wonderful gift of Christine Thomas!

My deepest thanks to an awesome and amazing woman named sweet Caroline for watching the girls last Saturday morning so that Shayne could run in the "RUN LIKE THE DICKENS" - a 5K held in conjunction with Tiffin's Victorian Christmas Festival. (Isn't the name absolutely darling?! Well, Shayne had many other names for it since his time wasn't what he had hoped it to be, nor was it as warm as he had hoped, but I'm so proud of him for working hard, entering and running a great time in the race! GO, Shayne.) I was busy in Columbus Friday night and Saturday with my teachers meetings so Shayne dropped the girls off at Caroline's and she took the girls to breakfast and planned to be waiting at the finish line when Daddy came across it. He was dressed in his bright yellow shirt with his "AlexsLemonade.com" bandana on his head and with many thoughts of precious children who cannot run in his mind - that kept him going when the cold wind was whipping against his strong and healthy, cancer-free body he told me when I arrived home Saturday night.

Sunday afternoon was Christi's piano recital. Those incredibly amazing and compassion (and downright hilarious) friends from COSI (an interactive science museum with the greatest employees) drove all the way up from Columbus to hear Christi play "Up on the Rooftop". Yes, it was a mere four line song and they drove four HOURS to come to Tiffin to hear it. Amazing! Thank you sweet Traci, Nicole and Deanne. We went to Shell Shuckers restaurant after the recital and they loved the fact that you could throw your peanut shells on the floor - and at each other (a new trick that Christi and Shayla soon caught on to, thanks, ladies - ha!) We thoroughly enjoyed our time with them and were sad that they had to head back to Columbus all too soon.

Monday evening finally arrived - the night of the Michael O' Brien concert and what an event it was! Everyone made Christi feel so very special! WTTF's Radio - Talk Show / DJ Keith explained that Christi was scheduled to begin her piano lessons on what sadly ended up being the very same day she was instead diagnosed with cancer. Thanks to friends (Caroline and Doug) loaning Christi a keyboard I was able to help her learn and the keyboard traveled with us for countless hospital stays and nights spent in Ronald McDonald Houses. This fall Christi started real piano lessons - so far she's only had five, but she really plays well in my opinion. (And her teacher - Sister Marietta, still remembers the call from my Mother canceling Christi's lessons back in September of 2002. Wow. Thanks, Mom! I bet that wasn't an easy call to make!) Christi and Sister stepped up on stage and Christi played her four songs: Away in a Manger, Silent Night, Jingle Bells and Up on the Rooftop. Of course I'm bias, but I thought they were all flawless. It was really special for our family. Christi just beamed up on the stage with her very serious face on and her fingers providing the music seemingly filling the room full of love. I don't think anyone would have ever guessed that she was in the middle of her 17th round of chemotherapy as she played up there. Awesome! Thank you, kind Lord! As her doctors tell often us, "She is simply amazing!" We know she's been richly blessed.

Next, Michael O' Brien (originally from Cleveland and now from Florida) came out and did a fabulous, absolutely tremendous job of singing and entertaining all in attendance. Michael has a special way of mixing Rock and Roll with Christian music and running around with misters / spray bottles at the same time. I'm not sure how he can pull that all off, but he does! Thankfully, he avoided the front row full of Catholic nuns and me (Whew!) At one point I looked back and saw one of my 7th grade students standing up on his chair pointing to himself just trying to get nailed with the mister. Finally, Michael ran back to him, pulled him in close like he was going to mist his whole face, but then misted his family instead - all the while singing with his beautiful voice! What a hoot! www.michaelob.com

I believe that he sang for us all of the songs on his new Christmas CD. As a friend emailed me after the concert saying he won't be a secret in music any longer. I must agree! His Christmas CD is absolutely wonderful - just like he. What a kind and compassionate young man. He not only lifted Christi up and walked around singing to her, but he also took and held Shayla on stage too; she absolutely loved THAT special attention! She just beamed and has since told many about it in her lively and upbeat manner. There was the most awesome Santa (a high school teacher from Calvert) who danced with Christi in front of the stage and Michael sang a song Christi and I often sing to each other on our way to school: "Thank God for You!" The night was so lovely and magical. Our deepest thanks to Mike Frank, Michael O' Brien, Santa and Sister Marietta for making the night happen. (Santa even cut a lock of his beard for each of the girls - talk about feeling special! Wow!) Ephesians 2:8-9 - For it is by grace you have been saved, through faith-and this not from yourselves, it is the gift from God.

Perhaps still on a high from Monday night's concert, Wednesday's blood counts drawn at the hospital were absolutely, incredibly awesome! Praise God! Hgb. 11.6 (normal) platelets 149 (150 is normal). 4.8 white (normal) with an ANC of 2,600 (normal). Wow! Totally unbelievable! Now I don't have her book of medical records in front of me, but I'm willing to believe that those are the best blood counts she's had in well over a year, possibly 18 months. YES!! How about that for amazing and miraculous! Go, Christi! Due to this continued cough she's had since mid-October, Dr. Jasty - her oncologist from Toledo Mercy, ordered an X-ray which later proved to be clear. (Praise God as we were both concerned about new tumor growth when she ordered it "just to be safe". "What's an Xray really going to show?" I inquired. "If the tumor is big enough, it'll show," Dr. Jasty told me. I fully know the cancer world and how a tumor the size of a jelly bean can turn into a golf ball seemingly overnight so I stared and stared at Christi's Xray films once again playing Amateur Radiologist.) During Christi's physical exam she noticed that her right ankle (the one she's still complaining about and occasionally limping on) was bruised. Therefore, Thursday we went back to the orthopedic shoe store to get some new forms / inserts for her shoes; hopefully, this will remedy the situation. Since the MIBG was negative in mid-October at CHOP Dr. Jasty doesn't think it's the progression of disease. She's really been complaining after ballet and karate and yet doesn't want to not participate in her activities. Hopefully, the new shoe inserts will do the trick. (If she could just wear beloved flip flops year round, she'd be fine!! Smile.)

Her LDH level (which measures tumor activity) was a bit disturbing. It had been at an all time low in April of 2004 and has steadily increased each time since she started this ABT in April when her disease had progressed while on 13-cis-rethonic acid after her double high dose MIBG internal radiation attempt late last fall. In October at CHOP, the LDH level was just one point under normal. Well, she's never had it tested at our local hospital and the number was 222. Of course at first I cheered to the sweet lady on the telephone. (It had been 749. According to CHOP, under 750 is normal so I thought it really dropped, then quickly questioned the good news.) I asked, "What's the normal range at your hospital?" and I learned that normal is 100-199 on this particular scale, so 222 is not good. However, I'm going to try to put it out of my mind as there's nothing that can be done at this point anyway, but already we can feel the stress and tension mounting as the mid -January scans draw nearer and the fear once again kicks in.

Christi has gained 1 ½ pounds and has grown ½ inch over the past few months. She's now wearing size "8". She continues to read like a fiend. Recently, she finished reading an entire Ramona book in one three hour setting. Every night she reads in her bedroom for roughly an hour before falling asleep - often after Shayne and I. She still doesn't require much sleep. Also, I continue to marvel that she's feeling so well and I couldn't be more pleased. She finished her (7th round of ABT) on Thursday. On Friday we celebrated the seven day break off of chemo she now is on by going with Caroline to the movies after school. "The Incredibles" is absolutely INCREDIBLE! If you haven't seen it, please consider checking it out!! We were the only four in the whole theatre which was pretty neat, but I kept thinking how different than the one time I went to a movie theatre with Shayla in NYC and it was PACKED when we saw Nemo in the summer of 2003.

One night this week Shayla woke up crying with yet another reoccurring ear ache which was causing her extreme discomfort. Christi came downstairs and told us what had happened. It bothered Christi greatly to watch her sister wither in such pain. She got right up and set to work making Shayla a beautiful card with gorgeous rainbow bubble letters:

Dear Shayla,

I'm sorry you're sick so I give you ingredient. You have been brave and bold. This is a legend to be told. You're more than just a person you're a very, very, very good person!

Love, Christi (Pika, Pika)

Our refrigerator has become filled with pictures of beloved friends and family members obtained from the beautiful holiday cards so lovingly sent to our family. I love this time of year when the Christmas cards, photos and letters arrive. Thank you, friends! And I hope all will forgive me for again not sending out any Christmas cards this year (This now makes three years in a row) a task I used to thoroughly enjoy now seems to be a time consuming burden that I cannot muster up the effort to partake in while taking care of everything else.

Thomas team wishes to you and yours for a most joyous holiday season filled with comfort, love, peace and happiness. The kind support friends, family and strangers alike have so lovingly and continually bestowed upon Christi and our entire family makes us awe in His people. THANK YOU!

Wishing you peace,
Angela and the Thomas Team

PS: The site that was using Christi Thomas's name and Shelby, a deceased neuroblastoma fighter's pictures, was indeed shut down.

Christ's Joke: as she said to her Daddy: "Let's have a contest. The first one that sneezes, loses. While we're waiting, I'll tell you a joke. Knock, knock (Who's there?) Hatch" (Hatch who?) (Achoo, get it!) Christi won! Sorry, Daddy!

What's Next? Monday will be Christi's very first school Christmas program. (And Shayla's very first school Christmas program too since it's conducted with all of the k-3 students.) Never did I really think that I'd see Christi up on the little make-shift stage in the gym at a school Christmas program. What a joy it will be!! She's going to be a Lord a Leaping I think. I'm not certain, but she's jumping through a hoop, curtsying and bending down on her knee with her arms out to another little girl. She's practiced her part countless times and wanted to make sure she had a fancy dress to hold out. (Yes, Christi - and you'd never know it cost $6.00 from "Look Twice" a children's resale store in Columbus, but you'll look like a million bucks to your family who will arrive early and anxiously away your first ever performance!)

She has to go to the hospital this week for blood draws and all of the other tests required (Urine, LDH, PT/PTT, and some others) before starting her next round of chemo, but hopefully all will go well and she should start back on her 21 day schedule of ABT - 751 (round #8) on Friday, December 17th. If all goes as planned with "Wonder Girl", her tests and scans will be conducted in mid-January when Shayne will drive her back to Philadelphia. We pray that this is keeping her disease stable and if it's not any worse she will be permitted to continue this oral chemo for three more months and not have to return to CHOP until mid-April for repeated tests and scans. Lord, hear our prayers for Christi and all of these brave kids fighting against insurmountable odds.

Daddy's Funny: While driving to the Michael O' Brien concert Shayne said, "Christi, Mr. Cook called me up today and told me that someone wants to buy ChristiThomas.com. Christi roared with laughter. "What would they do with it?" she asked. "I don't know, but he's not going to sell it, Christi," responded Daddy. "How much did they want to pay for it?" "$1,500," responded Shayne. "Then what? Were they going to sell it on Ebay?" said Christi along with more giggles from the princess. "I think Mr. Cook could take us to a lot of water parks with his $1,500! Maybe he should sell it." Hee he hee heee!

Christi's Funny: While on the way to school, "Mom! I didn't make my list for Santa yet. Can I write it when we get home and email it to him?" So we did:

Saturday, December 11, 2004

Dear Santa,

Hello. How are you doing? I am fine. I've been really good this year for example I've played nicely with my sister, Shayla, I've made cards for sick people, and I take all my medicines even though they make me feel like I'm going to throw up and sometimes I do and get needles in my arms without complaining. How about you?

I think you and your elves are working hard making the kids' toys for Christmas. I thought you might wonder what I'd like for Christmas this year so here is my list:

1. a kamikaze connection (a flat telephone with a screen on it, but you can take care of pets and talk to your friends on it)

2. some new computer games

3. Beanie babies

4. Slime kano (hot wheels)

5. American girls bathtub

6. American girls matching robes for Felicity and me

7. Animal Ark chapter books

8. science projects

9. art projects

10. Lucky and Zorba (a video about a cat and a bird and the bird's mother dies and the cat saves him from dying.)

11. You can always surprise me!

Love,
Christi Thomas

PS: Please try to bring something for Buttercup too. She's always a good "kiddy".

Take new CD home for holiday

By MaryAnn Kromer, mkromer@advertiser-tribune.com

About 100 people attended a CD release party for Christian recording artist Michael O'Brien Monday night at Camden Falls. The artist is touring to promote his new Christmas album, "Home for Christmas," on AMI Records.

Radio personality Keith Hodkinson of WTTF served as master of ceremonies. He began by introducing the "opening act," Christi Thomas. About a year ago, O'Brien staged a benefit concert for the young cancer patient.

Hodkinson explained that Thomas was about to start piano lessons when she became ill with cancer. Now in her 17th round of chemotherapy, Christi finally is feeling strong enough to resume some of her activities. She wanted to share some of her music with the audience. Her teacher, Sister Marietta Kill, accompanied Christi.

O'Brien began his concert with "O Come All Ye Faithful." In between songs, he recalled his other Tiffin appearances at the Ritz Theatre and St. Mary Church.

"After my last appearance in Tiffin, I got all these e-mails. One said 'Our kids fall asleep every night listening to your voice,' " O'Brien said. "When I recorded 'Silent Night,' I tried to make it very soothing."

The artist also shared anecdotes about his appearances. At one hotel, some Japanese tourists mistook him for actor Kurt Russell. During an appearance at a record store, he drew more people than Latin star Ricki Martin. The singer also recounted his adventures in recording.

"You know when you record a Christmas album, you have to start it in July, and it's very hard to get in the spirit of the season," O'Brien said. "Then we had all these hurricanes. We lost power four times while we were recording."

Before singing "O Holy Night," he told listeners to imagine him trying to record that song while the hurricane was blowing outside. For the hit "Sacred Town," the artist said he drew on his experiences in Medjugorje, a shrine in Croatia where miracles have been reported.

[Top]