Thanksgiving - Thursday, November 28, 2002
Happy Thanksgiving to you!!! I hope this finds you well during this wonderful, American holiday. We have so much to be thankful for!! Every year at Thanksgiving, our family shares what they are thankful for. This year our list is longer than ever!! We may never get to eat! (hee hee!) We have been blessed by God's goodness in ways that are simply without measure! There are angels here on earth helping us each day. We are thankful for so many things here are just a few:
*having faith and love in our lives
*being supported and comforted by so many wonderful folks
*realizing that each day of life is a precious gift
We of course are also thankful for technology!!! Wow! The computer has been a tremendous time saver and great comfort for me. I really don't know what I'd do without it. I love what "Web master Eric" has done for us. I'm also thankful that Christi's Great Grandma now has Internet and email access to keep up with Christi's struggle and that my friend who claimed to be "technology challenged" has mastered email and is surfing like a real pro! (You can do ANYTHING if you try!) We're thankful that all of Shayne's office got flu shots this year to help keep him from bringing the flu home from the bank. (You guys are so nice! Thank you! Thank you! What a loving gesture!!) And I could fill up pages and pages with thank yous!!! We are very humbled.
Today my dear coworker (and Shayne's fourth grade teacher) is making us a turkey. Christi wants to break the wishbone like she remembers doing with her sister last year. I don't know what her wish will be, but I do know what mine will be!
Mrs. Smith is truly an angel here on earth! There is absolutely no doubt in our minds!!!!! Yesterday, she came and shared her love for science and learning with Christi. She brought over some science activities and had lessons with Christi. Christi, who's always at her best when her mind is occupied, was thrilled and I know she learned a ton from Mrs. Smith - every kid does!! She's a FABULOUS teacher!! She has done so much to help us. Everyday I smile when I open up my email and see the message(s) from her. She's amazing beyond belief! I had to laugh......Christi asked her for worksheets to go with her measurement lessons. (Christi loves doing activity books.) Mrs. Smith said, "I didn't want your Mom to think I was a worksheet teacher so I didn't bring any." I really believe in hands-on, active learning and it was so funny to hear MY KID ask for boring old worksheets! So cute!
Christi has been feeling just fine and lots of wonderful things have happened. One night, the doorbell rang. I looked out and saw lots of triangles. Confused, I told Christi to come and look out the window thinking it was for her, but then realized it was my teaching staff. I put on a warm hat and coat and step out on the sidewalk. I had forgotten it was my birthday. They sang "Happy Birthday" for me and I was speechless. (ME speechless!!! Amazing? eh?!!!) The only thing I could respond with was, "You look so silly!" They were an absolute hoot standing in the front yard wearing those little party hats for ME!! I couldn't help but laugh at them! What a wonderful group of people. As a teacher, I know first hand how much work they all had to do, yet they drove all the way over here to bring me cheer. Amazing! Over the past fourteen years, I've taught at Republic, we've formed a tight bond. We have cried and laughed together, and celebrated many joys and many sorrows. It is amazing how close you become to your coworkers. It is a bond that is very treasured by me. I have had other job opportunities come my way and I've turned them down knowing that S.E. is home and where I belong. I feel so blessed that I've been so fortunate to work for such a fabulous school district and teaching staff. Leave it to this group to invent "Birthday Caroling!" hee hee Thank you, fine friends! You are a class act!! (Well, except for those hats!!! hee hee heeeee!) Definitely, teachers with CLASS! (smile) I love you!!
Also last week, Christi's preschool teacher from last year, Mrs. Newhard, called to say she wanted to come out at noon to see Christi through the windows. Christi was very happy and quickly made her an art bead project for me to pass out the door to give her. Well, two vehicles pulled up and the Betty Jane Preschool teachers all spread out in the lawn with a huge smiles, waves and a banner for the girls. It was awesome!! (It was also a tremendous tear jerker for me!! I absolutely LOVED that school and always felt such great comfort knowing that while I was teaching, Christi was in a super place two days a week. Her teachers were fabulous and I looked forward to picking her up and hearing such sweet reviews about her. I was also always thinking, "My kid? She's a real stinker at home!" but so relieved that she knew how to be a good girl at preschool. I was thrilled that Shayla would be there this year in such kind and safe hands.) Those teachers made such a loving gesture and I just couldn't believe that they'd be so kind to do that for all of us. I've definitely learned of God's goodness through this ordeal. Mrs. Boehler, I'm so sorry I cut you out of the photo. Thanks for coming and for telling me that Christi played the toy piano a lot last year with you. I had no idea and I thank you for sharing a piece of her with me. How kind you all are!! Thanks for listening to Christi play a few little songs for you. I hope you could hear them through the window. She loved your applause!!!! So sorry Shayla was overly excited to say the very least!! How about her doing a somersault and not knocking down the Christmas tree? Now that's talent, right?!! ha! ha! Oh my!! We don't get a lot of excitement these days and you were definitely it for us! I pray that God gives me patience with little Shayla. I really need it! Awhile after they left and I was still sitting down crying, Christi came up and asked me what was wrong. I explained that I had happy tears because so many people love us and are praying for us and that we are so lucky. I actually think she understood.
She continues to love and to really improve with her piano planning. A renewed interest is that she has also been into writing poetry. I'm absolutely amazed at her talents!! I'll include a few at the end of this entry and if she continues with this interest, I'll ask Eric to add a Christi's Poetry link on her web site. Last summer she enjoyed going to the library and selecting poem books out of the "big girl section". She'd have me stand and read them to her on the porch while she acted them out in the front yard. She particularly liked poems about nature and animals. She had started to write poetry as the school year began, but of course with her diagnosis that came to a sudden halt. Shayne's always been able to recite long poetry and reads a lot of poetry to the girls, so maybe this is where she's learned to like it. I used to think it was sweet and romantic when we were dating and he'd recite Edgar Allen Poe to me. And when I was pregnant, many nights he would rub my tummy say, "This is Daddy." and read his favorite works to the girls floating around peacefully inside.
On the morning of the 21st, I drove through the fog getting down to Columbus. She needed a blood transfusion. When we left the hospital, I was in stop and go rush hour traffic in a lightening storm in the city and I was thankful she had drifted off to sleep in her car seat in the back. I knew that tornados must be coming again! It looked just like November 10th. In a panic I called Shayne who checked the forecast and told me, "It going to turn to snow. Drive carefully and keep coming north." Snow! I couldn't believe it! We got home safely that night before any snow fell. Then when I woke up the next morning there was several inches of snow! Crazy!! I was never so thankful to be at home that next day knowing that she was again doing well and I wouldn't have to travel. I'm really worried about what this winter weather will be like and the challenges it will present me. I get so anxious each night before I have to make the twice per week trip to the hospital that I do not sleep well and then I'm really tense driving both ways. I pray and tell myself to relax and that I am riding on your shoulders, because I know that you are all helping me through your prayers - thank you!
Shayne found out from the hospital that the average Neuroblastoma patient stays 48 days for their bone marrow transplant and the cost is between $185,000 and $325,000 depending on the length of stay. Next he called the insurance company. Remember, he is the levelheaded one and the one that I turned the insurance over to when I got upset. He also didn't want me waste energy on it (his words) and explained that I could better use that energy in taking care of the girls so he'd handle it. Well, when he was finished with the phone call he came into the kitchen and whispered to me, "I think I'm going to turn the insurance stuff back over to you." I whispered back, "Why?". He whispered, "Because the lady on the phone told me that if I use those words again she will have to disconnect me." Now Shayne is one of the most calm people I have ever met. Truly, as cool as a cucumber! It's one of the many qualities I love about him. I often get fired up and vent, but he's just the opposite. You really just can't shake or excite him into losing his cool. I've known him since the 3rd grade and we've either been married or dating for nearly twenty years and in all that time I think I may have heard him use bad words less than three times, so I knew it was bad and I knew his words to the insurance lady must not have been "please and thank you". Later, when we could talk without little ears listening, he told me that he called to find out how much of her transplant costs they would pay. He explained to the insurance rep. that they've only paid most of our bills at 50-60% because the hospitals charges are over "usual and customary" and we're at an out of network hospital, so he wanted to find out what the limit would be for her spring bone marrow transplant so that we could make arrangements to prepare now. She wouldn't tell him. He made the analogy that it would be like him making a loan and then later telling his customer what their interest rate would be after the deal was signed. His analogy didn't work. She said they would not disclose how much they would pay until after her transplant. Can you even believe that?! Prior to this crisis, I always thought that if you had insurance you would be covered. Little did I know that that is simply not the case. It appears to us that they will pay what they want to pay when they want to pay it. I do not understand how that's right. And for more humor - he asked what hospital we were to go to since Children's in Columbus is not in my plan's network. He found out that NO children's hospitals are in my insurance plan's network.
We were happy that last weekend's football went well with Kenton High School and Ohio State both being victorious. Congratulations!! While we're into fitness, we really aren't into sports; however, it was fabulous that both of these teams were winners. Ohio State's was certainly bittersweet for Shayne and I. For the past few years, we've flown out to Phoenix for the Fiesta Bowl. Shayne's sister lives in Tempe so we've all enjoyed the Fiesta Bowl activities, especially the parade and going to the game. We've always said, "Wouldn't it be great if the Buckeyes made it here?!" Well, in September when we returned home from Children's I canceled out our hotel and airline reservations for this year's Fiesta Bowl knowing we're not allowed to travel. So, if you're going to the game, please let us know and we'll be happy to suggest some tips for you. And when you watch that awesome parade (one of the top nationally ranked parades) know that had cancer not struck, I would have had the girls dressed in little OSU cheerleader outfits, holding cute signs and cheering for the Buckeyes at the parade and the game! Go, Buckeyes!!!
On Sunday, the 24th I attended mass for my Grandparents 65th wedding anniversary. What a joyous occasion!! The beginning song set off my tears as well as Grandma's and I couldn't force myself to turn my head to check in with my Mom standing on my other side as I feared she was crying too. I know how much she misses my Dad and how hard family events are for her now that he's in heaven. It was a wonderful mass. I'm so proud of my Grandparents. They are such kind and sweet folks! And I appreciated the priest speaking with me as "Christi's Mom" after church as well. It felt great to put a dress and heels on and to wear make up all for the very first time since early September when I first rushed Christi to the hospital. It's amazing how things now don't seem important like they once did. My very short hair now takes up no time and I cut off all of my fingernails back in September too knowing I wouldn't have time to care for them either. I'm definitely low maintenance now as I've got important things to now spend my time on. My priorities have definitely changed!
I still reflect back on those horrible first days of September. I'll never forget calling Mom to ask her to pick up Shayla from preschool and to keep her "for a while" because they found a tumor in Christi and we had to get to Columbus. Mom said, "Oh, no! I'm so sorry. I'll start the prayer chain." with absolute horror and fear in her voice. I think it was only right then that I realized how serious a tumor was. I've really learned a lot about cancer and the body since that time. I'll never forget that long drive to Columbus as she was in such pain and tears were streaming down Shayne's face as he drove and I sat with her in the back. The only thing he could manage to mumble out was, "She'll never be able to get insurance for the rest of her life having a preexisting condition." I know then we still didn't grasp that it was cancer and it is life threatening. I'll never forget stepping out into the hallway to use the bathroom when we still didn't know what was going on the second day at Children's and overhearing one nurse tell 2-3 others, "It's like an octopus wrapped all around her heart." and they suddenly, turned their heads, looked at me and immediately the talking ceased. I stepped right back in the room and told Shayne what I overheard and that I KNEW they were talking about Christi even though we hadn't yet received this information ourselves. And then finally, I'll never forget Christi's oncologist, sitting us down, patting my thigh, looking down and shaking her head as she muttered the words, "It doesn't look good." and then to proceed to explain in words that I was too numb to comprehend how almost every possible test conducted came back with the worst of the worst features of Neuroblastoma. My how I've grown since that time. I've also gained such strength and courage. Things I could never have accomplished without being surround with so much love and support. When I get really down some days and my tears start flowing, I just go off by myself and think of all of the wonderful people who are getting us through this. It brings me great comfort to know that others care and that we're not alone in this battle.
So this thanksgiving I'm incredibly thankful to still have Christi (and of course little Shayla too!) in our lives. I know of many people who have lost their children so suddenly and not to have some special time together would be so difficult - truly a parent's worst nightmare. The average Neuroblastoma - stage IV child lives 248 days after diagnosis. We've just hit day 70 and we will continue to make the most of each and every day. We've very fortunate to have this special time together. I hope you are able to be with your loved ones this holiday. God bless you and have a happy Thankskgiving!!!!!
What's ahead for Christi?
Monday, December 2nd will be her MRI. This will indicate if her tumor is responding to the treatment by shrinking or not. She remembers this huge, scary looking machine and the very loud booming sound it makes. In September, despite the fact that she was sedated, they couldn't keep her asleep and couldn't completely finish the testing as a result of her pain and fear. I don't believe she'll be quite as scared this time since she's not in tremendous pain like she was and she is getting more comfortable with the hospital now. However, I'm going to take a Walkman and see if they'll permit her to wear it. It may help keep her asleep after being put to sleep. Mrs. Smith gave her Runaway Ralph on audio tape and that should be long enough for the 1 1/2 hour test. I'm hoping if she starts to wake up a treasured, familiar story may allow her to drift back off and not be so frightened. Monday will be a HUGE day and Shayne told me just last night not to get my hopes up and that we need to be prepared for any report back - good or bad. Battling cancer is like running hurdles. It's one after another. We really don't know what's going on inside her body - even though most days you wouldn't know she's sick from looking at the outside. Then, Wednesday, December 4th will be her Bone Marrow Test done in ICU again. (This will indicate if the remaining 10% of the cancerous cells are gone and her bone marrow can be harvested and frozen for her spring transplant.) We've received clearance with Los Angles for the purging and we're thrilled about that! Praise the Lord!! On Monday, December 9th, she will be admitted for her stem cell harvest which will probably need to take place over three days now to collect enough since we were not successful last month. Her fourth (of 12) round of chemo will begin after the harvest and then we will be back home in mid-December and hopefully stay home for Christmas.
Thank you for all!! We love you! Please keep the prayers coming!!! You have lifted us up!! We feel like we are riding on your shoulders!!! God blessings to you!!!! HAPPY THANKGIVING!!
Christi's Recent Joke: How do you make bears listen? Take off their "B's". (ears)
Christi's Recent Poetry: (She's drawn beautiful illustrations to go with each one and has put it in a special book - Thanks Paula! I will treasure this poem book forever and always. She loved sharing it with her wonderful teacher, Mrs. Rombach when she came for lessons. Mrs. Rombach brings us much joy! Thank you, Lisa! She's definitely another angel on earth! And a Saint in my eyes!!) On with Christi's poetry...............
written by Christine Shayna Thomas
What Makes a Garden Grow?
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