Friday afternoon, June 4, 2004
Sometimes life seems hard to bear,
If I always stayed on the mountain top
I have so much to learn
I do not always understand
My little valleys are nothing
Forgive me Lord, for complaining
Continue to strengthen me, Lord
Thank you for valleys, Lord
- Jane Eggleston
The day arrived that Shayne and I thought we would never ever see - Christi's last day of school for the year. I can't even begin to explain the happiness and joy that this noteworthy event brought to us. The day before we watched some old family videos. Christi was especially taken with the video I took of her on her first day of school last August. And so was I as her hair was extremely short- having just been off high dose chemo a few months and her answers to my "interview questions" so sweet as she anticipated going to school and starting the second grade. (Remember she only was able to attend fourteen days of first grade due to cancer and zero days of kindergarten. This was a HUGE deal!!) Shayne and I also discussed the fact that I literally got my classroom ready for school in 24 hours - thanks to help from my dear friend, Becky and we reflected on how fast everything happened. Last August we arrived home from NYC about six days before school and Christi asked if she could go to school - so we did! Now, nine and a half months later, she may still be in exactly the same place as she was on the first day of school in terms having cancer, but with cancer living inside our precious baby girl - we'll take it to still be here at all and we're thrilled that she was able to finish this school year! Shayne and I must admit that it was not what we expected deep down at all. Thank you, Lord! (And I hate to ask for a lot, but dear Lord, please let us celebrate the end of third grade together next year too. I really can't imagine life without our daughter. As you know, our daughters are our world and we're honored to be in treatment and to deal and cope with the many issues and sacrifices that go along with it just so she can still be with us. In terms of the big picture, it's really no hassle at all! Thank you, God!) We've been blessed beyond belief having this little girl, along with her little sister, in our lives! I believe Christi was sent her to do great things and that her work is not yet over. May the disease lay low and may God stay with her as she continues the fight against insurmountable odds. Thank you, Prayer Partners!!
Together we walked hand-in-hand across the grass heading home from our last day of school - exactly like we did going in for our first day of school together in August. It was great! But this time I sang, "School's out. School's out. The teachers let the monkeys out," and Christi giggled with delight. We'd like to give a tremendous THANK YOU to her wonderful, understanding, loving, compassionate and extremely talented teacher- Mrs. Rickel who did so much above and beyond this year. Christi overheard me telling Shayne she received all A's and she piped in with "And S+es too". And I was happy to see that Christi only missed 46 days of school. (I know that may seem like a ton to the normal person, but considering she's fighting a bloody war trying to take over her body and did so much cancer treatment through the school year: 3 rounds of chemo, 2 weeks of whole body internal radiation, 3 round of 13-cis-retonic acid and 1 round of oral chemo not to mention countless blood checks, mega vitamin taking and some transfusions, I think it's absolutely remarkable that she was able to go at all!!! Most kids are not! You go, girl! Thank you, Lord!) She brought home some lovely keepsakes from the year including a poster where her classmates wrote about her. Here's what her sweet classmates had to say:
Christi is silly and tells jokes at recess.
Christi invited us all to the Ritz for her birthday party.
Christi has a best friend named Theresa.
Christi has two cats. She had one first.
Christi is a kind person to everyone she meets.
Christi is funny and likes to play a lot.
Christi has two cats named Buttercup and Kitty Thomas.
Christi is excellent at making books.
Christi is a kind person.
Christi and I are really terrific friends.
Christi invited all of us to her party.
Christi is funny and loving to everyone.
We had an incredibly perfect Memorial Day weekend spent at Shayne's Mom's on Lake Erie. (Yes, Eric, I spelled that right this time. Last entry I accidentally typed, "Lake Eric". When wonderful Webby corrected me, I told him that he is so fabulous he should have an entire ocean named after him, not just a Great Lake! Smile. Thanks, Eric!) The girls enjoyed playing on the beach, making new friends, swimming in the pool and hanging out in Grandma Nee Nee's little place. Christi was THRILLED to go out on the lake with Daddy in her wet suit on the waver runner. I could hear her squealing and laughing with delight from the beach! It was priceless! (Those of you that know Shayne's unique laugh - Christi has it too!! And it's a delightful giggle on a seven year old girl. Smile.)
Not only was Tuesday Christi's last day of school, but it was also the day to get her blood counts checked so off we went early before school to do this. The numbers came back as follows: white 2.8, hgb. 10.4, platelets down to their lowest ever: just 76, (Oh my! No!) with an ANC of 1500. Of course her platelets, which haven't been this low since the beginning of February, set us off emailing CHOP with alarm and panic. What is going on? UGH! We spent all of Tuesday and Wednesday in the lowest of the lows as Shayne and I spouted off treatment ideas both day and sleepless nights back and forth to each other in desperation as we anxiously awaited a response back from those great folks in Philadelphia.
Then as I was back up at the lake again with the girls, and the ABT drugs were clear back at home, Shayne called to say that he received an email back from CHOP with the answer to our concerns. Now you don't want to read my words because they went something like this: %*&!!@$%%!!! (smile. just kidding) But, you read the oncologist's words and see what you'd say if you were in my shoes. Here goes:
After re-reviewing the protocol, I have realized that I slightly misspoke about the count requirement for restarting the drug. Rather than ANC of 1500 and platelets of 100, it is ANC 1500 and platelets 75 (restarting criteria is slightly different from protocol eligibility criteria). So, Christi is eligible to restart the drug. Prior to starting drug she needs documentation of a physical exam, a chemistry panel, a urinalysis, and PT and PTT (blood clotting tests). After she has the above done, she should start the ABT at the same dose that she received during the first cycle. If her counts are more significantly affected this time, we will consider lowering her dose.
Can you believe it? Oops! After I laughed and said to Shayne, "You've GOT to be kidding! No way!" I added, "Well, I guess this is just another good lesson on the fact that WE are the only ones truly responsible for her care." Others are helping, but the bottom line remains - it's all in our hands. You see, we had the parent copy of the protocol which doesn't indicate the counts required to CONTINUE (only to start) treatment and we did not ask for the oncologists' copy for this particular trial, but trust me - we will have it soon! And actually Christi did not have an ANC of 1500 until Tuesday so she really couldn't have started this second cycle until Tuesday (Day #20 off of treatment) anyway so Day #22 is about as good as we were going to get. PRAISE be to GOD that the oncologist double checked the protocol for continuation count requirements. We really thought we were D-O-N-E with ABT as we did not want to wait until day #42 of being without treatment and would have moved onto something else - therefore, making Christi ineligible for more ABT. Crazy! Whew!! (And I'm THRILLED to hear that they may lower her dosage level if her counts are so badly trashed again. My gut feeling is it is too high! Yes, it's done damage to the neuroblastoma cells, but also to her. Another dreaded cancer "Catch 22".)
Thursday we enjoyed the sun and fun at the Lake and then headed back home all too soon for her doctor's visit and ouchy blood work. That was a small fiasco in itself, but everyone at the doctor's office truly bent over backward to try to make all of the accommodations to keep us at the office instead of having to go to the hospital too. They are just great! Every time you start something new it's always a stressful situation I find. Much to my delight, her counts were also great!! Platelets 92 and Hgb. 10.6. Wow! (Now don't even ask about the white count or the ANC, because I can't even explain it myself. After two needle sticks - we still don't know. For some reason it couldn't be calculated.) Finally, after the sweet, sweet nurse, who couldn't explain to me why we didn't have a white count and she asked ME what an ANC was, she said something like, "Let me go ask again." I said something like, "No. We've been here for two long hours and now we're just going home and starting the chemo as soon as I make Sloppy Joes." And we did just that! Ahhhhh!!! Feels like we're back in the saddle again! Thank you, Lord!
Thanks for checking in and for your continued prayers for our little girl! We've been blessed!!
In His love,
Christi's Joke: What dinosaur can jump farther than a football field? Most of them. Football fields can't jump.
Shayla's Funnies: While we were at Shayne's Mom's I was putting sun screen on the girls and I commented on Shayla's skin being so tan already. They asked me why. I explained that Shayla has more pigment in her skin. Shayla asked, "Because I eat so much bacon?" (No, honey "pigs" and "pigment" are very different things, but yes you do love bacon and could eat it every day if we'd let you!)
After Shayla stubbed her toe, which brought blood, I put her in the bathtub and then brought her down for Dr. Daddy to inspect. As she peeled the nail back she said, "Now I have a "flip the flap toe". (The girls have always enjoyed "flip the flap books" so Shayne and I cracked up over her comment. We continue to marvel at how tough and brave she is!)
Shayla loves to go to the grocery store. She always asks if they have "examples" and if she can have one. (She means the "samples" of food items often available at the grocery store.)
Angela's Funny: When I received my acceptance letter into the Ph.D. program in Teaching at OSU it said that I was accepted into the "Doctor of Medicine" program. Hee hee! Perhaps they've heard that I've spent more time in hospitals during the past 21 months than most med students have and they gave me a honorary acceptance into med school. hee hee! It's been the joke with Shayne and I as he's often heard or said to me, "Well, you were accepted into Med School ya know." Ha!
What's Next? The ABT-751 (oral chemo) will continue for 20 more days. Blood checks and a doctor's office visit will be required twice per week. We've asked CHOP to schedule our tests/scans for July 1st and 2nd. We need to be in Washington DC on July 3rd for my teachers' meetings so this will save us a trip. (Our fingers are crossed that they will let us put off our tests by one week to save us what has often turned out to be an expensive trip due to travel costs.) If all continues to go well, she'll stay on the ABT indefinitely and she'll only need to test/scan at CHOP every two cycles. (Wouldn't that be great?! YES!)
Not only is tomorrow, June 5th, "Christi Thomas Day" in Fremont, Ohio (Thank you, Mayor and Eagle 99.1!) where we are all hoping for a very successful blood drive, but it is also her awesome Webmaster's birthday! Happy Birthday, Eric! HAPPY BIRTHDAY, WONDERFUL WEBBY!!!! We love you!
Next week will bring many practices for the girls' upcoming ballet recital at the Ritz - June 12th and 13th. They will also be attending Bible School which they are extremely excited about. They had to miss last year due to cancer treatments.
Lemonade Stand: Friday, June 25th (10:00 AM to 2:00 PM) at the Old Fort Bank (Westgate Office) across from McDonalds, beside Hardees and in front of Odd Lots. Hope to see you there. (When life gives you lemons, make lemonade............Christi's making the lemonade for you!) This morning, Alex Scott, was on the Today Show promoting her lemonade stands and her book!! How exciting (yet terribly emotional for me as my tears wouldn't stop flowing) to see someone we know experiencing such a crisis herself yet helping others on TV! We've received her lovely book entitled, "Alex and the Amazing Lemonade Stand". It is a WONDERFUL children's book all about how one person can make a BIG difference for many people. I'm not just saying it's a great book because of the image of Christi on page 25, but the whimsical, rhyming nature of the text and the content is very profound! It's a book of hope, inspiration and of helping other people despite having been dealt a bad hand yourself. So sweet! (And actually knowing folks in the illustrations is VERY cool for our family!) You won't be disappointed if you order a copy from Barnes and Noble or Amazon. It is a MUST HAVE for every elementary teacher's classroom library and every library! Christi will be donating a copy to her school library in August when school begins again. Congrats and thank yous to the Scotts!!!! We wish Alex the very best in reaching her goal of raising $1 million for pediatric cancer research this year and more importantly, we pray for a cure for 8 year old Alex who has been fighting for seven straight years. God be with you! We hope to see you again soon and we'd love to have you - our fearless leader, come to "Christi's Lemonade Stand for Alex's Fund" on June 25th. You and your family are always welcome in Tiffin, Ohio!
July 31st will be the 2nd Annual Christi Thomas Poker Run. This year we are THRILLED that the "Friends of Christi" at our suggestion will donate all proceeds to a tremendous group who helps kids from Tiffin and Seneca County - Just for Kids! We look forward to being able to participate ourselves for the first time this year and "Just for Kids" is a great charitable organization run by fabulous folks!
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Shayne & Angela Thomas: firstname.lastname@example.org