Thursday, August 7, 2003
"We must accept finite disappointment,
Being disappointed, yet trying not to lose hope, Shayne and I signed the consent forms for Christi to start yet another chemotherapy (Irinotecan) on Monday morning. So far all is going well and we pray that it's doing the job of destroying the cancer in her bone marrow. While she was still in the hospital recovering from surgery last week, I asked her if the surgery was better or worse than she had expected. She told me that it was much worse. She went on to further explain that she thought she was just going to wake up and have a band-aid on her back, not wake up to all of the tubes and wires, monitors and tapes. What a shock for her! Poor, Christi!
Monday's appointment with her surgeon, Dr. Michael LaQualia, was a good one and one that showed her lung area now FINE (Thank you to Christi's Crew of strong prayer warriors!) and she is off of her fat-free diet and on a normal diet. Yipeee!! She asked what a normal diet was and she liked the answer! When I took her back to start her chemo after rushing back to Ronald for a quick bath I even wheeled her into McDonalds for a ten piece chicken nuggets. I know she had been missing those high-fat nuggets! I ordered the ten piece; she loved them!
The day she was discharged, we went back to Ronald and all of us slept for a few hours. We wanted to make sure that Christi had eaten some food and was ready to make the ten hour journey home. That ended up being about 5:00 PM (rush hour in NYC) but off we went. Getting out of the city was not as bad as we had expected. We arrived home about 3:30 AM and it was fabulous to sleep in our own beds and to be in the comfort and security of our own home. We felt that if Christi was at home we could better handle her fat-free diet instead of trying to manage that at Ronald with the many shared kitchens situation here. We also wanted to get Shayla ourselves instead of having to ask someone to drive her all the way back to us at Ronald. I'm so happy we went home for the 3 1/2 days. "There's no place like home." said Judy Garland and we must agree. At home Christi also discovered that she has two more loose teeth. Go, Christi!
About 1:00 PM before we left for home last Wednesday, I called my teacher friend Caroline with a mission that I knew she'd be the perfect candidate for! I think she was disappointed that I wasn't calling to see if she'd take Shayla, but I knew she was the person for this job!! By 7:00 PM Caroline had been to the grocery store and had our fridge, freezer and counter top full of every fat-free food available!!! She's awesome!! Not only did she do that, but she made the most delicious fat-free spinach lasagna and strawberry pie (No crust for Christi though). Wow! What a friend!!!!!! As always, Tim had the lawn beautifully cut and Joan had everything in proper order in the house. (Thank you friends and family!) What a tremendous feeling to be home- even if our house had been struck by lightening and we would soon discover that there were a few little glitches with our house. (Nothing that couldn't be fixed with a few phone calls!)
The big discovery at home was that we think Buttercup may possibly have some kitties inside her tummy. Interesting for this inside cat, but Joan told us Buttercup had escaped outside a few times. This news is very exciting for Christi. Time will tell if it's true or not. Christi and I went to the Internet to research this exciting situation. She's also made plans to "sell" the kittens that she's not permitted to keep. (OK, she has a lot to learn yet, but I hate to squash her plans of "selling" her extra kitties to good homes.) One of the wonderful nurses nearly had Dr. Kushner talked into "buying" one of them in his office on Monday. (smile.) Christi even drew a great picture of Buttercup feeding LOTS of kitties on his dry erase board making him laugh. Typically, she draws on the paper that covers the examining table.
Even though we brought Christi home only to rest and to eat well, when she asked on Friday morning if she could go to the library I couldn't resist. What kind of mother would say no to a child wanting to go to the library?!!! Getting in the hot van she said, "I wish we could just walk to the library like in New York." Turns out she wanted to get books to read to Buttercup which she did. We also ran into Grandma Donna in the parking lot! What a thrill!!! And Christi wanted to stop by to say hello to two teacher friends - who just happen to have cats in their homes of course!!!
Sunday came much too soon and we dreaded going back to NY. We had wanted to take the girls to the "Stations of the Cross" at the Sorrorwful Mother Shrine after mass, but when we came out of church, it was raining. We will have to do that another time. Therefore, we stopped by Denise and Tim's home and enjoyed a delicious meal (with meat!) and let Christi off of her fat-free diet for the special treat. Happy 35th Wedding Anniversary to Marilyn and Dennis - Denise's wonderful parents! We didn't mean to crash your party!! You guys are so awesome! Thank you all!!!
We arrived back at Ronald about 1:30 AM after many traffic delays, construction, accidents and driving through sheets of rain. My back was still aching like it was most of the weekend and I don't know how Shayne did it - again! I think his future job may be that of a truck driver! (smile)
Christi started her new chemo at the hospital on Monday. On Tuesday, my back and neck pain was so horrible I literally had tears running down my cheeks as I slowly, very slowly, pushed her stroller to the hospital. Shayne was taking Shayla to preschool and then coming over to the hospital. I walked across the street to New York Hospital's urgent care center where the doctor gave me a shot of morphine, and sent me back to Ronald with prescriptions for Vicodin (a narcotic for pain) and Ibuprofen (a muscle relaxer). I told the doctor that I am typically an anti-medicine person, but that I felt so bad I wanted it all!!! He told me that the build up of trying to sleep on planes, floors and vans did their toll on my body. Never have I before ever been in excruciating pain like that. The meds have helped tremendously. I'm still having pain, but nothing like Tuesday.
That night Shayne took the girls on the Ronald Trip of a double-decker sightseeing (Grayline) bus around the city for two hours. Of course they sat up on the top. Shayne felt that Christi could have easily given the tour since she's been to so many places in NYC and she added her comments to the tour guide's speech. They had a great time and I continued to sleep and stare at the ceiling back at Ronald. So crazy! I've never felt so old. I kept telling myself Christi feels like this and worse and is so brave, yet I'm asking for pain medicine to knock me out fast!! (smile)
Two nights ago Christi received a most special package in the mail. This is a CD by Songs of Love. http://www.songsoflove.org The song, created especially for her by professional songwriters and singers is called, "Christi Thomas". It's all about her and her favorite things and people. She spent the next two nights (I have free calling after 9:00 PM) calling many of her family and friends and playing the incredible song for them. They would say, "Who did that?" And she'd respond, "Lee and Sarah" like she knew these kind singers that she's never met. Songs of Love is a charitable organization devoted to providing personalized songs to children facing medical challenges. The songwriters and singers loving dedicate their time and talents to create unique lyrics and melodies which highlight the distinct personality of each person. There is no charge for their services. They are a charitable organization which accepts donations. I simply filled out a form and about one month later, this beautiful CD arrived. Thank you, Songs of Love!!!! (I'll type the lyrics at the bottom of this entry. Christi already has memorized them completely perhaps I can get her to enter her song for me.) Not to be outdone, Christi Great Aunt Marty and Uncle "Jeffy" called us 24 hours later to sing a song that they wrote for the Thomas Girls too. Totally cracked us up!! I'll list it here at the bottom too because it was oh so funny! (I think they need to keep their day jobs!)
Wednesday, after chemo, she was feeling pretty well and she wanted to go to art class at the Met at 3:30. Shayne and Shayla were with Veronica and her father at the Natural History Museum on the west side of Central Park so Christi and I went to the Met on the east side of Central Park. Christi enjoyed the art class and literally talked the teachers' ears off she was so into talking about the paintings and her sketchings. After a quick run back to Ronald (in the rain, but she was under her plastic cover) we just made it for her favorite show at 5:00 - PBS's Cyberchase. Shayne and Shayla arrived back later both talking about a fabulous day at the museum with Veronica and playing in Central Park before heading back to play for a while in Veronica's apartment.
New in Christi's Clubhouse is my Internet and Listserv friend's little girl from Arizona. Madison is fighting neuroblastoma (for the second time) and is a darling little four year old gal that takes the cutest pictures. Please visit her site and keep her in your prayers. Her parents are dealing with the unthinkable as they make the latest decisions wondering how much more Madison can endure. They are always in our prayers and our thoughts.
I also wanted to let you know that Marie and Rick's beautiful Angel Akaida's web site continues on!! Marie is so wonderful! She's created a beautiful Memorial of Akaida and also has updates under Family Updates. She's also launched a new section of little friends that they've met along the way and who are in need of prayers and support. Marie and her husband recently donated platelets and hope to become regular donors knowing how these kids, especially at the very end, are needing platelet transfusions on a daily basis. I can't even comprehend how difficult that would be, but yet they've done that to help others. Such sweet Christian people! God please love and comfort them!! Blessed are they that mourn: for they shall be comforted (Matthew 5:4)
This Saturday will be the 8th annual Attica Fair Cheer Contest. This is something that I founded and started directing eight years ago after presenting a proposal to the Fair Board. The competition has been my true passion and hobby for the past seven years growing it into the state's largest cheerleading competition and into something that various fair board members have told me has allowed the Attica Fair to continue to exist. My goal has always been to conduct a most efficient, fast competition with low entry fees and high quality in trophies, prizes, gifts and judging. It's proved successful over the years with last year having nearly 700 cheerleaders from 17 counties across the state come to little Attica, Ohio. I had many more ideas I was hoping to try this year, but of course that didn't happen. And I find I'm still having my yearly bad dreams about the competition (rain, injuries, judges not showing, etc.). I just hope Kim and Shar aren't.
Turning it over to others was probably the hardest thing I had to do making the realization in February that I would not be able to do it myself this summer. Thankfully, a former high school friend, Kim R. and the current high school cheer coach, Shar E. volunteered to step in and have been working so hard to organize and run it for me this year. So many others had also volunteered to help. Shar wanted to do something special for Christi and wanted to make sure that was okay. Instead of "Cheers for Christi" I requested her to do something to help all of these cancer fighting kids so I'm thrilled that $1.00 of each cheerleader's entry fee will be donated to a charity which helps raise money for all types of Children's Cancer. (That should be around $700.00!) I have selected the National Childhood Cancer Foundation for a variety of reasons which I'll write more about in a future journal entry. At the bottom of this week's entry, I'll paste the page I typed for inclusion in this year's cheer contest program booklet. I was hopeful that we might be home for the competition and then Sharlyn and Kim could put me to work somewhere for them, but instead I must remain with Christi in treatment here in NYC. Of course when I joked with Shar that she's probably putting pins in a voo doo doll of me she joked right back, that the doll is already full and she needs a second one! (hee hee! I love you, Shar! THANKS for everything!)
I thank Kim and Sharlyn from the bottom of my heart and I wish both of them as well as all of the fabulous cheer coaches and all of the cheerleaders a terrific competition in just two days!!!! Christi and Shayla always enjoyed attending the competition for a bit of time during the day with Shayne. It was a nice way to let them see what Mommy had been working so hard on all summer long - finally, an accomplished program all coming together for the fair. Last year, Christi asked if she could enter an individual division this year. I told her that she couldn't compete, because some might not think that was fair if the director's daughter was competing, but that she could perform for the judges instead - just like my cheer squad. That was fine with her. Last year after she finished her summer gymnastics lessons in Fostoria she couldn't do a cartwheel to save her soul, but she nearly had a back walkover mastered. Impressive!! I know if she would have been able to remain in gymnastics this year she would have perfected that and would be doing it at the competition on Saturday in her little routine I would have choreographed for her. It's amazing how quickly cancer changes everything about your life. Here's wishing Kim and Shar a TREMENDOUS competition and a HUGE thank you for working so hard on it for me and all of my hometown of Attica!!!!!
Thanks to all of Christi's Crew for your constant support, prayers and love! We've been so blessed!!
What is a shoe's favorite dessert? Snickers. (Get it? Sneakers.)
What has a head and a tail but no body? (a coin)
What is the tallest building in the world? (The library - it has the most stories!)
What's Next? Next week will be a repeat of this week. A daily infusion of Irinotecan (chemo) and hopefully the short term side effects will continue to be minimal. This has been our easiest chemo ever! Thank you, Lord!!!
A Message from Cheerleading Competition Founder, Angela Thomas:
Cheers to my fellow coaches, cheerleaders and cheer parents!! For those of you wondering why I am not joining you this year, I am sorry that I cannot be with you in person, but I am joining you in spirit!! Exactly one month after last year's cheer competition, my world fell apart.
Our cherished five year old daughter, Christi, was diagnosed with a rare form of cancer and given a 35% chance of survival. Intense treatment was started in Columbus. Unfortunately, Christi's cancer did not respond and "treatment failure" was declared. Perhaps because of my cheerleading background, I have a "never give up, never give in" positive attitude and being a kindergarten teacher I've always believed in never giving up on a child - no matter how daunting the circumstances may be. Therefore, in December, we transferred our daughter's care to the world renowned MSKCC which treats more cases of neuroblastoma than any other institution on the planet. We relocated to the Ronald McDonald House of NYC where we have lived ever since.
Our beloved Christi's cells are still are still not responding well to experimental treatment and she has virtually no chance of survival; however, currently she is alive and she is fighting every day! I still have vivid images of her modeling the many, little cheerleading uniforms for you at last year's evening style show with her long, blond hair flowing. I had no idea there was a nasty tumor wrapped around her heart and spine. She was pain free and you made her so happy with all of your applause! Thank you for making her feel proud and for giving me beautiful memories and pictures I will treasure forever!
The stakes couldn't be any higher, nor the odds any lower, but we still remain committed to a cure! What can you do to help? I ask that you please pray for our six year old gift from God. God performs miracles every day and we pray that Christi will be one and will be a testament to His work. Also, please donate blood to help cancer and other transfusion dependent patients back home. Blood supplies are always low and while it won't be used to help Christi directly, another person will benefit as a result of you sharing your gift of life. Finally, please consider donating to a childhood cancer charity.
I'm very happy that a donation from this year's proceeds will be sent to a childhood cancer organization for research. Every school day another 46 children in the US are diagnosed with cancer. Cancer kills more children than any other disease. Nothing can be done to prevent childhood cancer. No one knows why children get cancer. Childhood cancer depends mainly on philanthropy to make up for sources of funds (such as the lack of large scale pharmaceutical company support) enjoyed by adult oncology. No child should have to suffer.
Finally, thank you for your support!! You're amazing! I don't want to overlook anyone, but I must simply must mention my heartfelt thanks: to the Willard Cheerleaders who instead of having their traditional Christmas exchange, sent gifts to Christi. To the Fremont Cheerleaders who sent $100.00 from their great competition and sent us beautiful buttons of Christi in her dance costume that Shayne and I wear nearly every day. To Jodi Klamfoth and her Cheers for Charity Competition which sent $1,000 to the Christi Can. To Jami Hepp (Tiffin Cheerleaders) for substitute teaching my kindergarten class. To everyone for all of the supportive emails, cards and gifts we have received and of course to the awesome Seneca East Cheerleaders for their flower sales and continued support and love!! I miss you all!! Finally, a HUGE thank you to Kim Reesman who stepped up to serve for me as SEJH Cheer Coach in addition to co-directing this year's competition along with Sharyln Ehrsman. Thank you, wonderful ladies!!!!!!
Best wishes to you all for a fabulous 8th annual competition!! God willing, Christi and I will both join you again next year!! Cheers!!!
Yours in Spirit, Angela Thomas
CHRISTI'S SONG by SONGS OF LOVE:
Christi Thomas, here's a promise
Christi Thomas, here's a promise..........
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