Journal Entry

Friday, May 28, 2004

If you can't change your mind are you sure you still have one?

(What a hoot!) The above comment hangs as a bumper sticker outside the office of my current Professor (and my Advisor in OSU's Teaching and Learning doctorate program). This extremely bright, gorgeous and fascinating woman is an inspiration to me. And I must share a small section of what she recently wrote in her journal about Christi because it deeply touched me:

Tich Nhat Hanh says this: When I was a novice, I could not understand why, if the world is filled with suffering, the Buddha (in this case, little Christi Thomas) has such a beautiful smile. Why isn't (s)he disturbed by all the suffering? Later I discovered that the Buddha has enough understanding, calm, and strength; that is why the suffering does not overwhelm (her). (S)he is able to smile to suffering because (s)he knows how to take care of it and to help transform it. We need to be aware of the suffering, but retain our clarity, calmness and strength so we can help transform the situation. The ocean of tears cannot drown us if compassion is there. That is why the Buddha's (Christi's) smile is possible.(p. 6-7)

She also gave Christi a lovely kente cloth bookmark from Ghana. Kente is woven to remind us of our strength and our responsibility to take care of one another. I thought it was a perfect symbol for Christi. Christi recently learned about Dr. D.'s preschool in Africa which needed paint. She received a card with money in it for her birthday and instead of going to the Penn bookstore she wanted the money to go to the preschool so that their school wouldn't fall down. She wrote my Professor a sweet note with the donation telling her she'd like to get over cancer and come to Africa to her preschool to help work with the little four year olds. It was very moving - for both me and my Professor. May God be with the African Queen Mother - Dr. D. and her Mpeasem Village Friends and may the preschool be painted soon.

Today was an emotional one for me; however, not in the way things have typically been emotional for me since Christi's diagnosis. Today was my final day of school with my most fabulous and delightful "little friends". While I am happy that summer break is here - along with more casual and slower mornings, I realize how much I'm going to miss the little heroes who take up a big space in my life and who put a smile upon my face. I wish them, along with their families, the very, very best in life! This year's students have been a remarkable group and it has been my privilege to have had the opportunity to serve as their kindergarten teacher and to have worked with these precious children and their families. I know that all too soon I will see them in their caps and gowns - graduating from High School setting out to change the world into a better place! Best wishes to the class of 2016! They will go far!

This week was also emotionally difficult for Shayne as well. This week we were shocked to learn that a teenager we lived with at the Ronald McDonald House in NYC for 9 months gained her Angel wings and had her celebration of life service today back in Nevada. Even though she suffered from a different form of cancer, "Big Kristy" as we called her (and of course our Christi was "Little Christi") shared so much with Christi (and all of us!). Both girls took dance lessons (or did before cancer) and enjoyed creating art at the Pottery Shoppe next to Ronald when they were feeling well enough to do so. "Big Kristy" would talk with "Little Christi" about their ballet classes, the girls would share their dance pictures and when the Ronald House had tickets to see Swan Lake at Lincoln Center both "Christi/Kristy's" were thrilled that they were invited to go. "Don't forget to dance." - a motto of Kristy's will forever been embedded in my head..and in my heart! The last time we saw this beautiful teenager she was in remission! It was our final morning in NYC - the day of the blackout. Who could forget that?! (Definitely not the fabulous Anne Marie - Christi's hospital teacher, stuck down in the subway for hours.) Things seemed so bright for a teenager who just wanted to get her driver's license, go to prom and graduate..and then the disease suddenly came back with a vengeance. Cancer is absolutely sickening!!

After Christi's diagnosis, some sweet, sweet folks offered to cut and donate their hair to have a wig made for Christi (who quite frankly didn't want one because she was "beautiful on the inside" and didn't need something as trivial as hair - ah, to be five!). I believe most of those awesome angels on earth donated their hair to "Locks of Love" anyway. I always told them (and still do), "It's the teenage girls that really, really appreciate it." And I always think of Big Kristy! She was often very, very ill- sitting in her wheelchair and clenching her yellow bucket; yet, she'd most always have a gorgeous wig on and her make up done just right. May God wrap His loving arms around her family left here on earth to try to pick up the pieces and continue on without their precious dancer! "Don't forget to dance." We love and miss you, Big Kristy and we know you are dancing on the finest and most awesome stage and finally pain and cancer free - suffering no more! Kristy's website (where she sometimes wrote as well as her sweet Mother) is in Christi's Clubhouse and at

I don't have much medical news to share this week. Christi (as well as all of us) has been enjoying this glorious Ohio weather. It's been perfect! We've been spending a lot of time outdoors. After school Shayla's typically off exploring with a neighbor child while Christi's perfecting her bike riding skills, reading in the hammock and playing the keyboard on the porch (where she has far surpassed my talent and I'm contemplating getting her some real lessons somehow). We've been blessed!

Last Thursday, May 21, her blood counts were again too low to begin her second round of this drug in which she's the 29th child to ever take and the first child in the world to ever attempt this high of a dosing level. (White 3.0, hgb. 8.9, platelets 90, with an ANC of 1300) NEEDED TO CONTINUE WITH ABT - 751: Platelets of 100 or higher and an ANC of 1500 or higher. Close, but no cigar! Monday's counts were perhaps a bit better, but still not high enough to start. (White 2.4, Hgb. 9.9, platelets 87 with an ANC of 1400). She has 42 days total to get her blood counts up before being removed from this clinical trial. Our fingers are crossed and our prayers are flowing! (Yesterday, was day #16.)

After school yesterday we went to the hospital where her counts were white 2.7, hgb. 9.5, platelets down to 78 with an ANC of 1400. Ugh! We consulted Dr. Maris and asked him when is it time to panic. He said, "Absolutely no reason to panic."The typical reason for this is a virus that normally would not cause any problems, but in her new engrafted marrow is more suppressive. If we are in the same situation in one week we can discuss the pros/cons of another bone marrow test to make sure all is still in order (and that her marrow shows signs of recovery). I'm afraid that the second cycle is really going to kick her bum bum (trash her counts to smithereens) but Shayne reminds me not to think about that and to just deal with one situation at a time. We're not even there yet! Hopefully next week will bring much higher blood counts!!! That is our prayer request.

The following is to be kept a secret from Christi, who most likely won't even realize or understand the importance at all, but on Saturday, June 5th the Mayor of Fremont will declare it to be "CHRISTI THOMAS DAY"! This is the day of the Fremont blood drives where Christi is excited about getting to volunteer to "help" the grown ups as they donate blood. (And of course she's happy that "little people" don't have to get stuck that day - just sweet grown ups who want to!) She and Shayne will be interviewed at 9:00 and where the Mayor of Fremont - Terry Overmyer will make the declaration before the blood drives begin. Thank you for giving the gift of life! Blood donors are one of the reasons why our precious little girl is still with us today. Forever thankful will we be!! "Every two seconds, someone in our country needs a blood transfusion." Source: American Red Cross. Please call Melissa Rogers at the YMCA, 419-332-1531 or Mike Piero at the Recreation Center, 419-334-5906 to schedule an appointment or for more information.

Thanks for checking in! Here's wishing you and yours a great weekend. Hug your kids tight for me!!

In His love,

PRAYER REQUEST: For Christi's blood counts to rise to acceptable levels in order to start her second round of ABT – 751 next week. Lord, hear our prayer.

What's Next?

Friday after ballet lessons we will head up to good old Lake Erie where we'll spend Memorial Day weekend with Shayne's wonderful Mother - Grandma Nee Nee.

Dance Unlimited's Ballet Recital: Ritz Theatre June 12th and June 13th.

Christi's Lemonade Stand for Alex's Lemonade Stand: Saturday, June 19th Tiffin, Ohio!! Now that we're certain we will be in Tiffin we've set a date and hope folks will come out and have a cup of lemonade for a very good cause - pediatric cancer research. "Raising money one cup at a time." Alex's book (about her lemonade stand) is now available at Barnes & Nobel and she will be on the Today Show on Friday, June 5th. Oprah will have a segment of Alex and her Lemonade Stand on June 7th in case you'd like to tune in. We're very thankful for what Alex has done as Christi has directly benefited from participating in studies at CHOP. Thanks to the Scotts! We know it is only through experimental treatments that Christi may someday have a shot at a cure!

Here's the story from the Fremont News Messenger on Wednesday, May 26, 2004:

Blood drive to honor local girl

News-Messenger reports

Eagle 99 to sponsor Blood Drive in Honor of Christi Thomas

Eagle 99 will join the American Red Cross to host a blood drive from 9 a.m. to 3 p.m. June 5. The drive will be held at two locations, The Sandusky County YMCA, 1000 North Street and the Fremont Recreation Center, 600 Saint Joseph Street.

The drive is in honor of Christi Thomas, a seven-year-old girl who is suffering from fourth-stage Neuroblastoma, a rare cancer of the nervous system. Through her treatment, Christi has undergone more than 40 blood transfusions, so her family feels giving blood in her honor is a great gift to Christi.

The purpose of the drive is to collect whole blood donations to help Christi and other patients like her. This blood drive will also serve as a celebration for Christi and her family for their will and determination in fighting this disease. Fremont Mayor Terry Overmyer will proclaim June 5, 2004, as Christi Thomas Day in Fremont.

To donate blood, you must be at least 17 years of age, weigh at least 110 pounds, be in good general health and feel well on the day of donation and not have donated whole blood within the previous 56 days. From registration through completion, the process takes about 90 minutes.

Please call Melissa Rogers at the YMCA, 419-332-1531 or Mike Piero at the Recreation Center, 419-334-5906 to schedule an appointment or for more information.