Thursday, October 31, 2002
HAPPY TRICK OR TREAT NIGHT!!! It was definitely the most wonderful trick or treat night we've ever experienced! THANK YOU, thank you!! You are amazing and impressive! We were not sure if people would come or not and we prepared Christi for this by explaining to her that we live way out in the country and it's a long way for people to drive so perhaps no one will come. We sat with a stack of books to read and coloring books to color by the windows, but we simply did not have time to do much of that as YOU arrived and kept us entertained on our porch all night!! Sixty people signed Christi's sign in sheet. Wow! Thank you! I haven't seen any of you for so long; it was fantastic to see you and to attempt to talk with you through the window. :-) Your precious kids were darling and some of you downright hilarious in those costumes!!! (LOVED the wig, Tim!) Thank you dear, sweet friends and family. What a great joy for a shut in child and shut in mother alike! I know the porch was extremely tacky, but Christi loved all of the pumpkins and orange lighted decorations! May God bless you and keep you safe in his loving arms! Thank you for a glorious evening!!
Little Shayla dressed in a darling Dorothy costume that I picked up at a garage sale this summer for $1.00. I think she enjoyed being Judy Garland and she went trick or treating in town with Mrs. Smith and Miss Stiffler. I'm not sure who was more excited - 3 year old Shayla, or the teachers hmmmmmmmm?!! hee hee! I love you guys! THANKS! She had a BALL! I can't wait to see the pictures. Thank you for taking little Shayla!
We've also thankful that we had a good week! Christi never got the dreaded fever over the weekend, nor this week either! Yipeeee! Praise to God! Everything is better when we're at home; I'm so glad she didn't need to be admitted. It's still hard to believe she did not so we feel that this extra time at home has been a great bonus! This week I finished reading her Beezus and Romona and Ramona the Pest. We've now started Ramona the Brave as well as Sideways Stories.. (Thanks, Caroline for providing Christi with GREAT reading material!) She did not need any blood or platelet transfusions this week either. (I'm amazed and thrilled with ALL of this even though her Doctors continue to say that this is absolutely no indication of how her tumor is reacting. It is simply making us all more comfortable and it's easier to deal with.)
She was absolutely hilarious after we got the news that she didn't need any transfusions today. Going in this morning, I told her that I felt she would need a platelet transfusion today. This afternoon we were informed that her counts came back above needed transfusions levels and that we were free to go - no transfusions needed! yipeee! I dialed Shayne's number as Christi LOVES reporting her blood count numbers to Shayne and she started right in with, "I didn't need any platelets, or cups, bowls, knives or spoons today!!!! ha ha ha ha!!" I think he got it! She was so happy and laughing hysterically over that one. (Jay Leno - watch out!) She knows what her blood count numbers need to be above so she doesn't require a transfusion and watches me record them on her chart at the hospital when the reports come back. She's doing GREAT! (We think!) We were also told today that her counts are so good that she can discontinue her daily injection (which boosts the red blood cells) for a few days. We were absolutely thrilled and doing a jig with a little break from needles and my pocket book was thrilled and dancing as the daily shots are just under $100 each.
Hopefully, next week will be more of the same and that will allow her to get really strong and ready to go back for her stem cell harvest and third round of six days of chemotherapy. Next week will bring her audiogram and EKG tests. Both baselines were established as perfect in September so now we'll be able to assess how much damage has been done. (Side effects from the potent chemo cause damage to both hearing and heart.) She will also have a bone marrow test down in ICU next week and within 24 hours we will know if the cancerous cells have cleared out of her bone marrow and that we may proceed with the stem cell harvest. (**Please pray that they've been destroyed and that she may continue on this treatment protocol.)
If she stays healthy, on Nov. 11th they'll put her under to insert the catheter in her leg. Then she'll be brought back up to our "home away from home" floor - J5 where she'll go in an office like room and there she will be hooked up for six hours. At that point they'll circulate her blood through a machine that will separate out her stem cells a process called aphaeresis. She should be uncomfortable during this process but it shouldn't be real painful. Knowing Christi, she'll be filled with great anxiety and fear. If they are able to harvest enough she'll start chemo the next day, if not this process will be repeated to get more stem cells and then chemo will be pushed back one day. The stem cells will be transferred to OSU where they will be frozen for her bone marrow transplant in the spring. (They've assured me they have "good freezers" and every back up system imaginable. "Just checking" I said. Actually, my biggest concern is that the cancerous cells will get put right back in her during the transplant. It's a risk, but they tell me a slight one. The stem cells need to be removed NOW before the continued chemo in her system does any more damage to them. They will be used to generate new bone marrow this spring Isn't that absolutely amazing that this is even possible?! Wow! Shayne's sister (and one of Christi's Godmothers) will be flying in from Phoenix to stay here with Shayla during this third round and for "Harvest Time" - not exactly how this farmer's daughter ever thought of Harvest Time before!
Nov. 12th will be her "Half Birthday" so she can be like her sister and tack a 1/2 after her number 5. Since we'll be in the hospital, I think I'll plan a little Half Birthday Party for the three of us. Perhaps bake her half a cake and make birthday hats - cut in half. Maybe give her half a card. Perhaps planning her half birthday party will keep my minds on fun things next week and make her hospital stay more pleasurable. (Can you believe they haven't kicked us out yet?! We thought the bubble party in the hallway almost pushed us over their limits of fun last month - wait till they see this 1/2 birthday party - hee hee!)
On Sunday, our wonderful school's PTO had a Spaghetti Dinner Benefit for Christi. We've heard that it was a fabulous turn out and about 800 dinners sold. I wish we would have been allowed to attend - even though it would have been extremely difficult to talk with people in person. I'm OK emailing, but often break down on the phone and in person is really bad when someone drops off a meal and I step out to say a quick, germ free hello. (And our neighbor's sweet Baby Clay won the 50/50 drawing and dropped that additional money off for us last night. Thanks, Baby Clay!!) Never did I dream that I would be a charity case and this has probably been the most difficult part of this entire ordeal - accepting things that I know we really need others to help us with now. We're humbled by the support our communities have shown us and very grateful as Christi's first bill for just the hospital stay part alone was over $37,000. (That's more than my yearly salary!) We're grateful to have insurance despite it's limits and grateful for others helping us with all of the uncovered costs. We're extremely hesitant and concerned with discovering what the physicians' and surgeons' bills will be for just that first 14 day stay since they are not included in that amount. Anyway, I'm not even sure who to begin thanking for the spaghetti dinner, so please let me say thank you to all of you who were involved. I know it was a tremendous undertaking and a countless number of people assisted with planning, set up, donating, working, etc., etc. for Christi's Benefit Dinner. There are many of you rallying for our little girl and that says TONS! We feel very loved and blessed to know you all. You've reached out and touched our lives and our hearts and we will always be deeply indebted to you! Thanks!
The Fostoria Review Times had a fabulous article in their paper about Christi on Saturday. I was very surprised to see the paper and two color photos and corresponding article taking up about 75% of the front page. Wow! Thank you! I've sent it to Webmaster Eric to see if he can scan it since the majority of you did not see it and may desire to view it. I'll also include at the bottom of this entry the email interview that was conducted. (You know me......I had more to say than they could print! hee hee IMAGINE THAT?!)
Eric added a counter to Christi's Home Page at your suggestion. Oh my!! That blew me away! I'd better start spell checking my entries now over 10,000 visitors seeing his site for Christi. That reassures me that heaven is a bustling place with all of you praying for our precious little one it also tells me I need to be sure to check my spelling! ALSO: ERIC WILL BE GOING ON A BANK TRIP SO THIS SITE WILL NOT BE UPDATED UNTIL AFTER NOV. 12th. So please don't worry and feel free to email me at any time to check on how she's getting along and I'll get right back to you. I find your emails very refreshing.
It's hard to believe that exactly one year ago, the girls and I spent the day at my Mother's having the time of our lives (morning story hour - Hi Ms. Judy and Miss Jill!! We miss you and your fabulous story time sessions!! Afternoon - painting pumpkins, creating a variety of fall crafts and evening trick or treating at Mom and Paw Paw Joe's nursing home) When we came home that night, Shayne was waiting for the girls. He'd set up his telescope on the deck and knew we would marvel at the full moon that night. We did! Tonight we marvel at your kindness and generosity. Thank you from the bottom of our hearts!
CHRISTI'S RECENT JOKE: How do you get to the Ritz? Practice, practice, practice!
Fostoria Review Times Article:
1. What are Christi's absolute favorite activities/toys/books/subjects, etc?
Shayne: We spent alot of time making Christi's education decision for this past fall and it has paid off. She loved school the short time she was there and continues to enjoy her education. Although her doctors will not allow her to attend school, her teacher has graciously agreed to tutor her so when her blood counts permit her she takes her lessons at home
Shayne: Christi is intrigued and fascinated by numbers and number functions. Art of all forms, reading and being read to, and watching Magic School Bus round out her days. Before she became immune suppressed due to the chemotherapy she enjoyed regular trips to science centers, art museums, zoos and libraries. She also got her first pet in mid-July - a barn kitty she named Buttercup. Buttercup continues to be her joy and delight.
Shayne: Her recent favorite activities have been pattern blocks, astronomy, and sketching. Carebears are back and Christi is glad to experience them for the first time.
2. Tell me about the shift from a "normal" life to a "hospital" life. What is your schedule like?
Angela: Always being "on alert" is a bit stressful I must admit. Christi's temperature is recorded two times per day. We have to start the drive to Columbus when her fever gets to 101. If it goes to 103 she has to be life flighted to Children's Hospital. We've been told to expect that she will have to be life flighted 2-3 times this year. That's a scary thought; however, knowing that it is a reality allows us to be mentally prepared for when it happens. We have our suitcases loaded in the vehicle at all times in case she needs to be admitted after an exam or for when fever sets in.
Shayne: It's probably hard to believe, but at this point our hospital days are extremely busy. One of us is entertaining Christi while the other is advocating on her behalf trying to get her meals and snacks delivered, medicine dosed out properly and on time, and reminding staff and volunteers to wash their hands when they enter her room, talking with doctors. Angela sleeps on a couch inside the room and I sleep on a mat on the floor. So far we've spent 25 nights there in the past 41 days. We've been told that we'll spend over 100 nights there throughout this ordeal. The most trying challenge will be the eight week stint during her bone marrow transplant. Her BMT will follow her 5 rounds of chemo, surgery, and radiation and then will continue with more chemo. This should take place over the course of about eleven months if her cancer is responding to the protocol.
Angela: The biggest transition for Christi has been not being with her beloved cat, Buttercup. The three of us being together in such a small space - we refer to it as our space pod, could be trying but so far we've tried to make everything as lighthearted and as happy as possible for Christi. We call ourselves "The Thomas Team" and we're all fighting in this battle together. From many things I've read I've learned that spirit has a lot to do with kicking this beast; therefore, we're trying to keep her spirits bright and cheery at all times despite the fact that we some times have to take turns stepping out into the hallway to let our tears roll.
Angela: She really misses going to school; however, when she's home, her teacher Mrs. Rombach comes out to our home to tutor Christi and she thrives on those sessions. I'm amazed at how much she is learning and thank Mrs. Rombach. Lisa and I started teaching together 14 years ago and she came to the hospital to meet Christi just a couple of hours after Christine Shayna was born on May 12, 1997. I was thrilled that Christi was a student in my dear friend's class this year; I just had no idea that it would end up being this one-on-one situation instead. Mrs. Rombach is truly Christi's inspiration!
3 1/2 year old sister, Shayla stays with Angela's Mother as well as with friends during our scheduled and unscheduled visits to the hospital. For Christi's chemo week in November, Shayne's sister will be flying in from Phoenix to stay with Shayla. Everyone has been so kind with their offers to help us with little Shayla.
Angela: Christi has exams two mornings each week at her hospital in Columbus. She has not tolerated the drives very well due to nausea and it's hard to drive and to manage her care at the same time. For the past 16 years I made countless trips to Columbus for teachers' meetings and I never worried about driving so far alone; now that I am transporting precious cargo, I constantly worry about everything that could go wrong during our trips. I'm not yet ready to think about winter driving conditions and leaving home before the sun is up twice a week, but I'll deal with that when I'm forced to.
3. Without getting too personal, what is the estimated costs of treating Christi's disease / the financial burden you are facing?
Shayne: There is a limit on our family insurance policy which Angela carries through her workplace/school. The hospital has given a range of care options that are available to us. This range of potential cost is correlated to how well her cancer responds to traditional treatment. Some clinical trials are not covered at all by insurance. Also, we're not certain how we'll handle her many, daily radiation treatments (it will follow surgery) which will be conducted at a different hospital (St. James) in Columbus. We have started investigating housing options as Christi is not tolerating the drives to Columbus very well and radiation will be an every day requirement for some time with potential bothersome, immediate side effects.
4. What types of donations/community/business support have you received? Where can people send cards/gifts/donations?
Shayne: We have not sought out any assistance; however, people have been extremely kind, supportive and helpful. A few have contacted us about having a fundraiser for Christi and have only asked for our blessings to do so. Donations can be dropped off at any Old Fort Bank office. The bank has been wonderful about this.
Shayne: While we were first in the hospital for 15 days, friends cleaned our entire home. A couple times a week some wonderful individual drops off a meal and our grass is maintained by a friend far better than when I did it. While in the hospital the first time we said if this can be beat with bears, prayers, and balloons we are home free. Christi has been showered with stuffed animals. Our neighbor has been generous enough to allow us to use their vehicle to make our many trips to Columbus to save wear and tear on Angela's van with plenty of miles on it. We cannot possibly thank everyone enough for their kindness, generosity and support. We hope that they continue to keep their prayers for Christi going throughout this year. We've always said we have friends we do not deserve and this certainly has proved it to us.
5. Any other personal thoughts, feelings
Angela: We know that this nightmare will be life altering for Shayla as well. Whether it is for better or worse we may never know. Her world has been tossed upside down too. We find her to be very clingy and very demanding. She also had to be removed from preschool so that Christi wouldn't have the risk of Shayla possibly bringing something into our home that could make Christi ill due to her greatly suppressed immune system.
Angela: We are at the beginning of a very long uphill battle - a downright bloody war we've been informed. We have no idea what the future will bring, but we are taking each day at a time and trying to make the best out of it. She has tolerated her first two rounds of chemo and her first blood transfusions extremely well. So far our biggest hurdle has been her boredom.
Angela: Her statistics include a 35% chance of surviving for 2-5 years and a 5 - 15% chance of living over 20 years. We refuse to accept this verdict as a death sentence, but as a test that she will pass just like she'd passed so many other tests with flying colors before. She's never failed to amaze us with her exceptionalities. That hope is what we're holding on to. If she does survive, the long term side effects are absolutely horrible; however, we'll take each hurdle one jump at a time while enjoying this precious gift from God each day that she is here on earth with us and we will make the best of each and every day.
Shayne: As the father of another Neuroblastoma victim explained it to me - the year of cancer treatment is the most memorable and most important year of your entire life. Another cancer mom explained it by paraphrasing Mother Theresa. God only gives us what we can handle. I just wish He didn't trust us so much.
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Shayne & Angela Thomas: email@example.com