Journal Entry

Thursday, November 18, 2004

Created with love just for you
Because everyone needs a friend or two
I flap my wings with great pride
And I always like to hide
What am I?
A butterfly!

Written for Caroline by Christi Thomas, age 7

Dear loving and faithful Christi Crew,

Hello. I know I promised to update with Christi's official results just as soon as we had them; however, a most horrible unexpected death occurred and no longer did sitting down and writing about a little girl who is feeling so well right now seem like something I could even muster up the energy to do. Now here it is - over two weeks later and the pain, horror and great concern for my friend remain strong. Please allow me to back up just a bit to Oct. 31, 2004:

Christi's piano recital was so lovely and yet it was there that we learned that one of Christi's Supporters - Shayne's great Aunt from Michigan, had succumbed to cancer. Having endured chemo herself, early on she sent Christi some lovely scarves to help keep her bald head warm. Shayne really wanted to make the trip to Michigan on Monday morning to give his condolences to Uncle Ed, but with my class down in Columbus on Monday night we just couldn't work out child care for the girls so he decided not to head up with his Mom, but to care for the girls instead. I'm so glad he did. God works in mysterious ways...

Unexpectedly, early Monday morning - now over two weeks ago, I received a extremely disturbing phone call from my dear sweet teacher friend in great distress, calling with overwhelming concern about her husband. Christi heard me run and shout the news to Shayne that she needed help and he needed to get to town immediately. Then I found Christi out in the hallway down on her knees in her pajamas praying for Doug. I threw a rosary around my neck so I wouldn't lose it in all of the commotion and grabbed the phone back to try to make arrangements to somehow get the girls to school so I could get to Caroline without delay, yet I found myself with tears pouring down on the kitchen floor as I clutched the kitchen counter praying that I'd just meet Caroline in the emergency room and that Doug would be okay. Neither child even had their hair nor their teeth brushed as I handed them granola bars telling them to please hurry up and get themselves buckled up in the van. (Somehow I remembered to have Christi take her chemo before dropping her off at my friend Linda's home; I don't know how! Thank you, Lord!)

Immense sadness can't even describe the numbness we feel over the loss of Doug - friend, teacher, husband, father, and so much more. We just spent Thursday night on their porch. Shayne and Doug chatted politics before the big election and I gave him a goodbye hug; I thought it was fine! What a horrible shock! I look back and read that I've mentioned Caroline three times in my last journal entry before this happened; this awesome couple is so very special to us! The hole in our hearts will always be here and our hearts and prayers go out to sweet Caroline who so suddenly just lost her very best friend. We will do everything possible to provide comfort and support for her! Recently, I've had the pleasure of spending some overnights with her and that has possibly brought me more comfort than I've provided her. She is a doll and our heart bleeds for her loss. The poem at the top of this entry was written for Caroline by Christi in an effort to bring a smile to her face. Rest in peace, dear Doug.

Here are the results I promised even though they weren't at all what we had hoped and prayed for yet we know that they could be MUCH worse:

The official test results for Christi Thomas from October 22-23, 2004 are as follows:

*MIBG scan - negative for neuroblastoma

*ECHO - (to test her heart function which can be damaged by this drug) Shortening Factor 39% (normal)

*Pegboard (to test for nerve damage which can be damaged by this drug) fine

*VMA / VHA (Urine markers) - 6.4 (VMA) and 7.8 (HVA) both normal *Yet higher than previous results! (yikes!)

*LDH level - 749 (normal - but barely! Normal: 420-750) * Yet higher than previous results (Yikes!)

*bone marrow - clusters of cohesive cells (5-10%) (increased a bit, yikes!)

*bone marrow cellular level - (20%) (Increased, but that is a very good thing! This reduced dosage of chemo isn't hitting her quite so hard it appears.)

So what does this really mean? It's "basically" the same, but perhaps most probably a little bit worse. (How about THAT for MY official interpretation?!) No test is completely accurate, however, the series of tests give an impression of the disease status. Her urine markers and LDH levels are both higher indicating more neuroblastoma and her bone marrow appears to have more disease; however, it's so hard to measure and to interpret these reports so who really knows?! Not me! The good news is that her cellular level was increased from only 5% of "healthy" marrow to now 20% - which shows that the decreased amount of chemo has helped with that - has it helped with the cancer?? Well the "official" reports didn't give us a lot of information, but we feel better to now have them in hand anyway.

By now she's finished her 6th round of this experimental chemo (ABT - 751) and is feeling well; she'll start round #7 on Friday (my birthday). Two weeks ago at the hospital they were unable to hit a vein to draw the blood despite many attempts. She, as always, was a tremendous sport; however, I just couldn't let them try to stick her with yet another needle in another part of the arm so I stopped them and jokingly said, "No more torture. We'll be back next week." I've learned over time it's becoming easier and easier to be the child advocate and to know when to tell the people in the big shoes (adults) no more! The next week arrived and we had an appointment with her Toledo oncologist; however, they didn't make it and didn't call us to cancel but we had her blood counts checked anyway, as required, and they were wonderful! (Her best platelet count in six months! She's still not fully recovered from the double high dose MIBG treatment with stem cell rescue that she was enduringly exactly one year ago at CHOP, but we were happy to see platelets of 130! Yahoo!) Yesterday's counts were nearly identical:

November 10th

November 17th

10.6 Hgb

10.0 hgb

4.2 white

4.3 white

130 platelets

128 platelets

2,100 ANC

2,200 ANC

On Monday Shayla came home from school with a fever and an ear ache. I took her to the doctor on Tuesday after school and got her on an antibiotic. Also, Christi had been complaining of her foot hurting, especially after her gym class each Friday (It actually hurt her so bad on Friday she was in tears and the gym teacher carried her across the gym. She cried the rest of the day at school.) so he checked out that too. Thankfully, an Xray proved that it wasn't fractured (Thank you, Lord!) yet she has pulled ligament. Her right foot is actually swollen, but she won't permit us to ice it. Given all we have come to know in the "Cancer World" these problems are very trivial and we know that both girls will soon be fixed! (Wouldn't it be nice to hear something so comforting about neuroblastoma?! Ha!)

It was with great happiness we learned of Alex making her $1 million goal for pediatric cancer research and yet with tremendous sadness wishing she were here on earth to join in on the celebration. With tears streaming down my face, I was fortunate enough to hear the TV segment one morning last week on the CBS Early Show via cell phone as I carefully drove to work/school and my friend Becky called to tell me it was on TV. Liz Scott, as always, sounded absolutely wonderful -so proud, grateful, humble and of course dearly missing their sweet AngelAlex who forever touched so many hearts and lives. We shall always be grateful for Alex's work and will be committed to continue on with her cause until a cure is found for this beast.

From the media:

It started with her lemonade stand. Now it's a nationwide cancer fight. Little Alexandra Scott's dying wish has been fulfilled. The Main Line girl's lemonade-stand fund-raisers for research into childhood cancer, which grew from a single front-yard stand to a national charity, have topped her seemingly impossible goal of $1 million for 2004.

When the segment ended my sweet friend Becky said, "So when is our lemonade stand next year?" and I was too choked up to say anything except, "I can't speak now." Rest in peace, sweet Alex, dear Doug and all of our beloved. Listed below is a message Liz sent me from Philadelphia about a new award someone may be interested in:

We are writing today to let you know about a new award that Volvo Cars has created. It is called the Alexandra Scott Butterfly Award and is a hero award started to honor children who go above and beyond for others.

If you know someone you would like to nominate, click here to nominate them. The child who is selected will receive a $25,000 donation to the charity of their choice. As part of the awards Volvo will also make a donation of $25,000 to Alex's Lemonade Stand For Pediatric Cancer each year.

Volvo describes their Volvo for Life Awards as follows:

The courage to act. The conscience to care. The character to do what is right. This is the promise of Volvo - and of the Volvo for life Awards program.

The Volvo for life Awards honors your heroes: ordinary people who go above and beyond the call of duty to help others in Volvo's core areas of Safety, Quality of life and Environment.

The nomination deadline for the 3rd Annual Volvo for life Awards program is January 10, 2005. Your hero could be featured on this Web site - and receive a donation to a charity of choice, a trip to our Times Square awards gala on March 23, 2005, a starring role in a heroes documentary'or even a Volvo for life!

Finally, last weekend we had our family pictures taken at the studio - a first since June of 2003 when Christi's hair was only ¼ inch all over her head. So many Angel parents have said that they wish that they would have had a family portrait taken before their loved one earned their wings so things being as they are I wanted to do this for many months, but hadn't taken the time. And I don't know why because the Picture People make it so S-I-M-P-L-E. If something would have happened to Christi or any of our family members, I would never have been able to forgive myself for not getting a recent picture taken. We arrived at the mall, had our pictures taken, got a bite to eat and walked out of the mall with all of her finished pictures in less than two hours. (Amazing!) Did I mention that the Picture People even let you bring pets in for no additional charge?

For whatever reason, the girls asked Shayne if they could take both cats for our photos and he said yes. (I would have said no, I guess they knew that when they asked Dad!) So the wonderful folks at The Picture People at the Sandusky Mall took many great shots and as always the photos were ready to take home in just one hour. (So my Mother had her birthday gift when she came over to dinner the very next day. A birthday we haven't been able to celebrate together for THREE YEARS due to Christi being in isolation in 2002 and in Philadelphia in 2003. Mom and I share the same birthday; what a blessing to be together this year! And my awesome and wonderful husband cooked the most delicious meal for us: beef roast, carrots, potatoes, onions, spinach salad, squash - mmmm!) Did I mention that the sweet, charming and patient photographer was allergic to cats? Oh, what an angel on earth! Now when you see the photos on the website be certain to look closely - you'll see tuna on the floor. Yes, the cats were so scared that Shayne had to bribe them out of the cat carrier with tuna he brought along just in case. What a hoot! Thank you to our favorite photographers at The Picture People. I've received many emails over the past two years asking where I get the girls' photos taken and the Picture People is a Hallmark Company and a nation-wide chain. If you go to their website and type in your zip code their locations will come right up and they typically have some good coupons on their site too. I've always felt that their prices were very reasonable and that the memories they capture are absolutely priceless. OK, before this really sounds like a commercial or something, I'll close and not update for quite a while. Thank you dear Prayer Warriors for checking in and for getting Christi this far! God bless you!

REMINDER: Please consider purchasing a calendar with proceeds going to CHOP's oncology research. (This is Christi's awesome hospital!!) The order info is on the front of Christi's website. They are $15.00 and will be mailed to you directly from Philadelphia. THANKS for your continued love, support and help. We've been richly blessed!!

Wishing you peace and thanking you for your love and support, Angela

Christi's Joke: Knock knock (who's there?] Ben. (Ben who?) Been knocking all day why weren't ya answering? (hee hee!)

What's Next? We'll spend the weekend with Alicia and "Wonderful Webby" up in Michigan. Her current cycle of chemo (Round #7 of ABT - 751 - something not even available to her just one short year ago, amazing, eh?!) will continue through mid-December. Piano recital December 5th. She's already memorized her piece "Up on the Housetop" and she's very excited about performing it. At the very bottom of this journal entry you'll find some INCREDIBLY EXCITING news about an upcoming event we hope you can attend!! All attendees will also receive a free gift valued at over the cost of the $10.00 tickets:

Michael O'Brien "Home for Christmas"

Monday, Dec. 6, 2004 @ 7:00 P.M.
Camden Falls Reception and Conference Center
2460 S. SR 231
Tiffin, OH 44883

$10.00 General Admission fee per ticket includes complimentary copy of Michael's Christmas CD consisting of such classics as:

  • Have Yourself A Merry Little Christmas
  • Silent Night
  • O Come All Ye Faithful
  • I'll Be Home For Christmas
  • O Holy Night
  • White Christmas
  • O Little Town of Bethlehem
  • Here Comes Santa Claus
  • Blue Christmas

Acceptable Forms of Payment:

  • Cash
  • Checks made payable to SOM Productions
  • Charge by phone (MC/Visa) @ 1-800-681-6335

To order tickets or for more information,
please call 419-448-8867.

Persons planning to attend are urged to purchase tickets early as a sell-out is anticipated.

Hampton Inn is offering a $60 plus tax room rate for anyone attending the concert on the night of Dec. 6th.

Carmella's Italian Ristorante normally closes at 10 P.M. on Mondays. They are offering extended hours for a possible "afterglow" party.

CHRISTI'S HISTORY: Dx. NB IV, on 9/11/02 (age 5) treated at Children's Columbus per #3891: surgical biopsy, chemo for four cycles - bone marrow didn't clear, transferred care to MSKCC in NYC for: 3 rounds chemo (no response), 4 rounds 3F8s/beta glucan (tumor progression), surgery to remover the tumor by Dr. L. July 2003, transferred care to CHOP: 4 rounds low dose Irinotecan, two high dose MIBGs treatments with stem cell rescue, 3 rounds Accutane (disease progression). Started ABT – 751 in April of 2004. Currently on her 7h round of ABT-751. Now age seven and scheduled to return to CHOP in mid-January before (hopefully) beginning her 9th round of ABT.