Journal Entry


Tuesday, May 18, 2004

"Praise the Lord. Praise, Oh servants of the Lord, praise the name of the Lord. Let the name of the Lord be praised, both now and forevermore. From the rising of the sun, to the place where it sets, the name of the Lord is to be praised."

(Psalm 111:1-4)

Hello sweet Christi Fans!

This afternoon I received all of the official reports from Christi's oncologist at CHOP regard her tests/scans conducted in Philly last Thursday and Friday. Even though she's not NED (no evidence of disease) we feel this is a wonderful step forward as she continues marching on in this uphill battle. Dr. Suzi says that she is "cautiously optimistic" and that she would say Christi has "stable disease with a hint of improvement". When (hopefully not "if") her blood counts return to high enough levels we'll start the second cycle of this new oral chemo - ABT 751 in which she's the 29th child in the world to try. Unfortunately, yesterday her blood counts were down even lower then they were on Thursday in Philly. Ugh. No one knows what is going on! Our prayers continue for the blood counts to get to high enough levels so that she can continue with this promising new treatment in an effort to grant us the miracle we need in getting her NED.

OFFICIAL REPORTS:

  • CT now normal - "new" spot resolved. Praise the Lord!
  • MIBG - normal
  • Urine Markers - normal
  • Bone Marrow - Neuroblastoma present, both sides less than 5%

Briefly, I'd like to share our thanks for a fabulous birthday celebration of Christi's life here on earth on Sunday. To all of the great folks at the Ritz Theatre, Madcaps of Cincinnati, the Betty Jane Preschool Teachers, Sherry Pryor, the numerous teenage volunteers and the sweet family and friends who came to the Ritz to help and to celebrate - THANK YOU!! As you saw Christi, had the time of her life running around and doing art with her friends. Shayne and I were deeply touched by the tremendous turnout. Thank you for the extra special efforts, Carolyn, Donna, Ann, Dave, Bryan, Melinda, Zach, etc., etc., etc., etc., etc.! We've been blessed by your love!! Thank you, everyone!

Eric ("Webby") has been working his bum bum off on Christi's web site as usual! Due to her birthday (which turned into a week long celebration) there were tons of pictures in which he spent hours uploading. When he jokingly called me "shutter bug" I told him that I would not take a single picture for an entire week. (It's going to kill me.......) Sweet Eric of course reminded me that he is our faithful servant and that I should keep shooting away. What a gem! I shall try to live up to my word and give him a much needed break! Thank you, Lord for Eric - keeping the prayers going to heal this child of God through her wonderful web site! Thank you!

Thanks for your continued love and support! When I think back to just over one year ago when an oncologist told us that if we hadn't taken Christi to Disney yet we should go because she wasn't going to live to celebrate a 7th birthday, I am moved to tears knowing how very blessed and special this "7th" year of life is. What a bonus! When I reflect back to this past January and to the oncologist who told us that she probably has just six months left, I feel the heartwarming love of those dear folks who have been faithfully lifting her up in prayer. What a gift! Praise be to God! Thank you dear Prayer Partners for getting her this far! Have a great week and hopefully there will be only good news from here on out. (hee hee heee! Wishful thinking! I know how tricky this beast is!)

With love, gratitude and appreciation,
Thomas Team Mom, Angela

www.ChristiThomas.com

What's next? Blood counts to be checked on Thursday after school. Hopefully, she'll start cycle #2 of ABT soon. When the new cycle of 21 days of ABT drugs ends, she'll head back to CHOP for tests/scans to see where we stand.

Blood Drive in Fremont in Christi's honor on Saturday, June 5th at the Fremont Rec Center and Fremont YMCA. Christi will be on hand to hold hands or help out "anyway she can". Thank you to the American Red Cross!

Her Lemonade Stand to raise $$ for pediatric cancer research (AlexsLemonade.com) will be scheduled as soon as we know when she'll be in Tiffin most likely on a Saturday in June to do this!!

Christi's Jokes:
What is the difference between pea soup & popcorn? (Anyone can pop popcorn.) OK, ok, that was gross, Christi!

Where are the biggest diamonds in the world? (At baseball parks)

Tommy said, "Mommy, can I lick the bowl?" Mommy says, "No, Tommy, you have to flush like everyone else!" (ok, ok, that was gross too Christi!)

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