Journal Entry

Thursday, August 19, 2004

The Prayer of Jabez

And Jabez called on the God of Israel saying, "oh, that You would bless me indeed, and enlarge my territory. That Your hand would be with me and that You would keep me from evil. That I may not cause pain!" So God granted him what he requested.

(1 Chronicles 4:10)

Our sincerest "Thomas Team Thanks" to our great local radio station - WTTF (1600AM) for airing live from 10-noon with Christi making "contributions" on the air during the Blood Drive. The radio broadcast was a delightful surprise to our family. Christi and Alex's lemonade Stand was set up outside of the Hospice building and it collected almost $150.00! Wow! Thank you, sweet folks! Alex's Mom has stated that now they are more committed then ever to Alex's cause - and so are we! Alex's fund is now up to $850,000; I believe that she'll definitely make her $1 million dollar goal with help from her friends here on earth. The question remains when? We, of course, hope it will be from a lemonade stand that may be set up on September 21st on the campus of Heidelberg College, but we don't know for certain if that event will happen or not. Regardless, we love you, Angel Alex!

One of our friends went along with his teenage daughter to give blood at the drive last Saturday. Unfortunately, he tried but wasn't able to give this time. He later sent us the following email which cracked us up:

The good news is that McKenzie was able to give blood and did fine with Christi right there to keep her relaxed and smiling. Christi gave McKenzie her "blood donor sticker" and I showed her my bandaged finger from my blood draw and jokingly said, "Shouldn't I get a sticker, too?" Christi took one of the stickers, wrote something on it and presented me with a sticker that then said, "I gave A LITTLE blood today!"

Donna's eight year old birthday swim party was a blast and we managed to also work in my classroom and go camping with the Bowermans out at Meadowbrook Park that day too. Then Shayne drove off to finish his Graduate School of Banking program at the University of Wisconsin and the girls and I have been busy as usual. Shayne's Mom has helped tremendously by doing some baby-sitting for me so that I could have some additional time preparing my classroom and my lessons as school is soon to begin. (The girls have been there "helping" me at school too, but I'm most thankful for the hours I've been able to spend by myself really getting things together thanks to help from the awesome Grandma Nee Nee!!) While Shayne has been gone, we've also been enjoying special days together with friends - especially "Grandma" Donna and Katie and Donna. We've also spent some time with Grandma Nonee and Paw Paw Joe. These fun times together have given us fond memories to treasure and they have also helped us take our minds off of the fact that we all really miss Daddy and are anxious for his return next week!

Christi met with Toledo Mercy Children's darling oncologist - Dr. Jasty, last Wednesday. Her blood counts were: 2.6 white, 9.2 hgb, and platelets 103 with an ANC of 1100. With blood counts still too low, this did not enable her to start on round #4 of ABT on Friday like we had hoped. Her patterns with this new drug have been extremely consistent. While I hate to be off of chemo for so long, I am filled with hope that her new (lower) dosing level will keep her in constant treatment because her blood counts should not be so severely affected; yet, I pray that this drug will still work as well as it has been. One would never know that her blood counts have been low by looking at her on the outside - she continues to look and feel fabulous! Thank you, Lord! She was literally running from one ride to the next one day at the great Attica Fair last week while I hugged and caught up with SO MANY folks I haven't seen for SO LONG! What joy!! Never did I think I'd really bring Christi back to the Attica Fair ever again. Unbelievable blessings from above! Yes!

I did receive some additional news regarding Christi's tests/scans from our early August trip out to CHOP: Christi's LDH level was 684 (normal 420-750 – this is a serum LDH - a non-specific marker that can be elevated with tumor activity) so we were very happy with this "normal" number!! Also, Christi's VMA/VHA (urine markers) were: VMA 5.9 and HVA 76.2 which also means "normal" - again another great blessing with this nasty beast. (HVA random - urine marker that is elevated with active neuroblastoma) normal range for Christi's age - 7 years old is: 0-15 mg/g Creatine. VMA random (urine marker that is elevated with active neuroblastoma) normal range for Christi – age seven years is: .0 - 9.0 mg/g Creative. We thank and give Him praise!! Yes!!!

Christi's final testing results are in from August 5th and 6th. Here the final reports which I've now receive the official 12 black and white pages so I'll just briefly summarize her results to make it nice and easy. (I like the simple NED in many categories!!).

CT scan - no evidence of disease
MIBG scan - no evidence of disease
Urine markers - no evidence of disease
LDH - no evidence of disease

All of this is unbelievably good news; HOWEVER, her bone marrow is still with disease - disease which is circulating throughout her entire body and nasty bone marrow disease which nothing thus far has been able to kill. This is what makes her a "ticking time bomb". Therefore, I guess we shall just pray harder! The official reports state something like this: Bone marrow aspirations indicated no tumor cells on the tandem aspirates smears; however, additional stains later proved clusters of tumor cells. (darn! Darn! Darn!) I knew we didn't need any "special stains with this gal's past history." hee hee! Oh well! "Minimal" is good news, no actually it's GREAT news in this world! I'll take it and really couldn't be any happier! The bone marrow biopsies were 1.3 cm and 1.2 cm in length and .2 cm in diameter (which are good size samples too). Both biopsies showed "minimal involvement by metastic neuroblastoma". I knew she isn't NED, but give the nature of this beast, we truly couldn't be any more pleased! I don't think I've ever seen the world "minimal" disease in her black and white reports before so we are very happy. I am concerned about the cell level being decreased, but I want to talk with Shayne about this first and then discuss it with Dr. Maris. That does concern me as it appears that this drug is really beating up her marrow if I'm reading the reports correctly. That may make her ineligible for further treatment - of any kind. Regardless, we are happy with the test results. "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) Thank you dearest prayer warriors!

The cheerleading competition went very well last Saturday. Now I'm most anxious for school to start and for my OSU class to start back up too. I'd like to thank Grandma Donna for taking such great care of Shayla while I was again busy with cheerleading and to a sweet young woman who used to be a student in my first and second grade class and who later was one of my cheerleaders - actually the same year Christi was born - Melissa H. for caring for Christi. Christi doesn't like to sit still to have her hair done, so I'm not quite certain how beautiful Melissa pulled it off, but when Melissa brought her down to the grandstands area at the fair where I was working to let me know Christi was there and ready to go, I was quite surprised! I thought she looked great. Then Melissa quietly asked, "Where are her cheer briefs? I couldn't find them so she's wearing black shorts under her skirt." Oops! So I had a lot going on, okay? (smile). I'm just happy I packed some play clothes so she could enjoy the fair after the competition. Thanks, Melissa!!

Out on the competition floor, Kristin helped with her routine while Melissa started and stopped her music and she did a fabulous job (OK, I'm bias!) performing her little routine (complete with a cartwheel with perfectly "bent" legs hee hee) in front of over 1,000 individuals all gathered in two sets of grandstands and standing around the track watching her and cheering her on. I think most everyone would have to agree: Cancer's nothing to cheer about, Christi is! I was wiping away tears while she cheers and danced and many others later told me that they were crying too. Seeing her out there you'd never know what she's been through and how absolutely horrible her prognosis is. We know it's a matter of time. One of the sweet high school cheer Moms told me, "Angela, I kept watching for you to turn around and look, but you never did. Christi received a standing ovation." How terribly, terribly kind! Then the Fremont St. Joe Cheerleaders came down to have their picture taken with her as they've so kindly invited her to their mini-cheer camps and have done such sweet things for so long. The Tiffin cheerleaders asked her to perform for them at their dress rehearsal in the big football stadium on Friday night - which she did, some sweet Fremont TNC cheerleaders brought both of the girls little stuffed doggies, more of her CureSeaerch cards sold than I ever thought would, the Willard cheer coach has written that she'd like to have Christi help with a lemonade stand at a game and at one point Christi was sitting on a cheer coach's lap that I didn't even know just happily watching the competition going on and the love surrounding her. This is one very loved and very lucky little girl!! Thank you to all of our spirited cheer friends and prayer warriors! You are simply amazing!

Yesterday's blood counts at the hospital were: 2.0 white, 10.5 hgb. And 92 platelets. Her ANC was 1,000. Another disappointment, but living with cancer has given us plenty of experience with disappointment. So, she's not starting back on the oral chemo pills (ABT 751) like we had hoped, but hopefully next week. I'll get her counts checked after school next Wednesday and then I hope to be starting the chemo again. It really makes me nervous to have disease circulating in her body and not be doing any treatment except for vitamins.

Personally, Alex and Simon's deaths have really taken a toll on me and have been quite draining. I couldn't be more pleased to have a neuroblastoma fighting daughter still doing so well, yet my heart is just breaking for our friends, located on two different sides of this great country, who have lost their precious children to this beast. One day while running errands and after driving past a cemetery, I overheard Christi tell Shayla that Alex's body is buried under the ground in a box, but her soul is in heaven. Shayla then had many questions for Christi and it was interesting to hear Christi's responses. (I am realizing that she knows a lot more than I think she does!!)

Last week, I was also terribly saddened to learn that one of my teaching friends lost her battle with cancer. Glenda was in remission and had come to the hospital while Christi was in Columbus Children's MANY times to help us all pass the time. (Knowing what it's like to experience chemo yourself I think made Glenda feel especially drawn to Christi.) They'd sit side-by-side in the hospital and Glenda would tell Christi that her hair would grow back just like hers did and that the chemo would get rid of her cancer - just like hers did. I celebrated with Glenda her wining the war with cancer - or so we thought. In May, when I received my Scholarship Award in Columbus, Glenda spent a lot of time with Shayne and the girls out in the lobby while I was busy inside. At the very end of the evening, after a very long hug, she told me that cancer really makes you do things you'd never even dream of doing before since you now realize how precious and short life is. Well, just a few weeks later, Glenda was not at the next meeting in Columbus and I was shocked and saddened to learn that her cancer had come back. She didn't make it to the July meetings and I learned her condition was worsening rapidly. Sadly, to her family, friends and students left back here on earth Mrs. Tech earned her Angel wings last week. Because of the constant work required at the end of the last week due to the cheerleading competition at the Attica Fair and with Shayne and my Mom being out of town, I just could not possibly make the 2 ½ hour one way drive down for her services like I wanted to do, but my heart was there and many tears have been shed here at home. Rest in peace my friend - Glenda Teach.

It was a lovely surprise to learn that Christi was in the Advertiser Tribune newspaper one day last week with an article entitled, "Christi Thomas Keeping Busy" (Eric already has this linked to her site - bottom of the Journal page. Thanks, sweet Webby!) Thank you to writer Mary Ann Kromer and to the Advertiser Tribune. I continue to believe that the good wishes and prayers from others here on earth is what is helping her to do so well right now. Thank you sweet friends and strangers alike! May God bless and keep you and yours save in His arms!


PS: In reminiscing about sweet Alex Scott, I wanted to share with you a picture I took of the girls at CHOP. They were donating books, thanks to a Gifted Education Professor at the University of Wisconsin who just happens to be friends with the Scotts too! (Small world, eh?!) Thanks for the great donation, beautiful Robin, Ph.D.! Alex, rest in peace; we miss you and you will forever live on in our hearts and in our minds!

Shayla's Funny: After working for hours in my classroom one night last week, I told the girls that I would take them to Fatheads for pizza. They were thrilled - hmm! Something about my cooking perhaps? Hee hee! After we ordered, the sweet waitress brought our food. Shayla said, "I like that saucy maid. She does exactly what I tell her." Christi piped in with . She's a waitress, not a maid." I chuckled and thought, "Perhaps she should not have gone to the theatre at Heidelberg to see that opera last year!" (A five year old should not be saying "saucy maid"! She doesn't know what it means and I'm not so certain I do either.)

What's next? We're so excited and anxious! We're all dressed in blue today - you see that's Shayne's favorite color and today we fly from Toledo, Ohio to Madison Wisconsin where Shayne will pick us up at the airport and where we will attend Shayne's graduation tomorrow! YES!! We will then spend the weekend with the Cooks (gold old Webby and beautiful Alciia) at the Wisconsin Dells. School starts on Monday. YES!! We're all excited and happy about that one too! Thank you, Lord! Thank you, friends!