Wednesday, October 8, 2003
"The pebble you throw into the waters of eternity have a way of causing ripples far beyond your lifetime, so you may never fully appreciate the effects of your efforts. Someday, some child whose life was lengthened by newfound treatment may well do something that will forever change history."
-Written by Mark Dugneon - Father of NB fighting Syndney and Founder of "Lunch for Life" to raise money for neuroblastoma research. Thank you, Mark!!
Greetings dear, sweet Christi fans!! I hope this finds you well!! We've had some little scares and concerns this week, but I now think, pray and hope all is stable with her disease now that she's back on chemo. It's amazing how quickly your heart races when you think the disease is taking off!! How terrifying!
Here's our weekly (plus) update: Last Sunday after church we drove to my Mom and Paw Paw Joe's to visit. Christi was able to give Aunt Tina and Cousin Will the shirts she decorated for them. We had a lovely day together - even venturing down to the "Pumpkin Patch" where Mom bought the girls pumpkins and together we explored (and got lost) in the corn maze. What a hoot!! Also, Mom blessed all of the Grandchildren with special holy anointing oil that was blessed by a prophet in Africa. (Now before you think what??? Let me explain......I didn't want Christi singled out so Mom decided to bless all of the grandchildren. She gathered the children in front of her and the adults made a circle around the little ones. It was very sweet. A while back, before Christi was even diagnosed, Mom attended a religious event where they were told to ask for something. Mom didn't know what to ask for, but finally decided to pray for the gift of healing. She said she didn't know why at the time, but that is what she prayed for. She was very good as tears were streaming down my face, she continued to be strong and to pray over all of the Grand kids gathered in front of her and to ask for a full and complete healing. She's amazing! It was done in such a way Christi had no idea how very ill she really is. (Thanks, Mom!) And the holy oil came from a sweet young gentleman (A friend of my great brother-in-law) who treated at MSKCC in NYC and whom I thought had passed away after MSK told him there was nothing more he could do. Well, after that he went to treat in Pennsylvania and guess what......today he's back to his practice as a dentist in remission from his cancer since January. I was shocked as I thought many times when we were in NYC about this young man with a family to raise and thought he was watching over them from above. He's not! He's tucking his kids into bed at night here on earth!! MIRACLES DO HAPPEN!!! Praise the Lord for Mark's healing! We hope this special holy oil will have the same impact on our little one too. Any while it's a very bizarre story I admit, this Bible based, Christian supposedly possessed healing powers as a child. He comes from a tribe in a village in Garne Africa where they call him a Prophet. And I am thankful for all who have prayed and who have shared their gifts with our daughter. Thank you! God bless you!
Chemo started on Monday (Round #10, Irinotecan - low dose, for two weeks) with the wonderful nurses from Mercy Home Health Care and "Doctor Daddy" fully in charge. Girl Scouts also started after school on Monday, but because Christi had to get her chemo she couldn't attend. Well, she has the sweetest Brownie Leader; Emily asked if I could bring Christi to her house after the chemo ended if she was feeling well so she could do the activities with her. What a leader! What a trooper! So I did. Christi had a ball and earned her first badge (Dance) and I really enjoyed my time visiting with one of my sweet kindergarten students (Emily's daughter) and doing a little writing project with her at her kitchen table.
Monday evening I also attended the parent meeting for children receiving Sacraments this year with Father Joe. It's hard to believe that soon Christi will be making her first confession and hopefully, this spring she will make her first communion with her class. They have told us that she can make her first communion by herself if she's not able to be with her class. I can "home school" her to prepare for this Sacrament, but we hope to have her back with her CCD class as soon as possible. I'm definitely not Sandie - Christi's religion teacher! That woman is amazing!
On Tuesday evening I set up an informal, fun night for all of my kindergarten students and their families. I knew I didn't need to worry about child care for my own children while I went to my school function (HA!). After I sent all of my notices and registration forms home with my awesome students, Shayne learned he was able to start back to work (in a part-time, different position) on Wednesday so on Tuesday he wanted to attend the all employee meeting at the bank. Therefore, for the first time in a very, very long time the girls needed a baby-sitter. I first thought I'd call one of my former cheerleaders and former kindergarten helpers who's now in college. (College students are always great baby-sitters! They need the $$ and they play with the kids and often bring activities.) Then it dawned on me, since I'd asked Sara to volunteer in my classroom one day a week I had already asked her to also help me with my Fall Family Fun Night too so she wasn't available. Well, the next day, Christi's teacher - Kristin told me that I should let her know anytime I wanted her to do anything. So it was a perfect time to ask her if she was still baby-sitting. (She was a tremendous baby-sitter when she was in college - always bringing act projects and activities to the house and getting down and playing and chasing the kids, stirring up fun - like these girls need stirred up!) She seemed thrilled. And of course Christi was THRILLED as she'd been asking for her to babysit for quite some time, but we hadn't needed a sitter with Shayne not working. When I returned home from my kindergarten program, I found that they'd all had a good time playing together. Thanks, Kristin! That gal is an angel without wings!
On Wednesday, Shayne started his first day back to the bank. He's working part-time, when he can, in a different role and at a different location. I know it was tough on him, but I really believe it was the right thing to do and we're most thankful and appreciative to his great employer - the Old Fort Bank.
Wednesday, Shayne picked Christi up just before the school day ended so she could get her chemo started on time. Christi told Shayne, "I have two things to tell you. The first thing is that my leg hurts behind my knee and the second thing is when can my teacher come and babysit again?" Oh, what a tremendous blow!!! (Leg pain is a HUGE sign that the cancer remains and that worse yet that it's spreading or progressing despite the two days of chemo. We were told that it would happen; it was just a matter of time.) Needless to say, I didn't sleep more than a couple of hours on Wednesday since I received that latest news. Oh, I hate this nasty monster!!!!! I took some medicine for my headache, but I think it had caffeine in it as I couldn't get to sleep the entire night with my mind racing and praying and cursing this nasty disease.
Thursday was an exciting day at school. Mrs. Rombach informed Christi that her poem entitled "Nature" won a first place award in the Ohio Council of Teachers of English and Language Arts (OCTELA) writing contest that Mrs. Rombach entered it in last year. She received a certificate and a $50.00 savings bond. (oooo! "That ought to make a big dent in her last MIBG isotope injection bill" I joked with her teacher. That injection is always $3,000 for the ten minute push. The MIBG scan itself is "only" $952.00 but at least that lasts for 90 minutes!!) Shayne and I were very proud of Christi's work and very happy and thankful that Mrs. Rombach always goes above and beyond!! With the writing contest in the past, the winning students were the guests of honor at a banquet in Columbus - our state Capital and they also got to meet a real author, receive a signed book and attend an awards ceremony. That was all cut this year. Christi could have cared less, but Lisa and I were disappointed that we didn't get to meet J. Patrick Lewis ourselves! (Smile) Oh, Lisa maybe it would have been just like when we met John Tesh - and he'd want to write a book about the two elementary teachers or something!! hee heeeeee! Did Mr. Tesh ever write that song about us?! (ha!)
A sweet bank friend stopped over (AND brought Christi a Xmas ornament of a yellow Mama cat with her kitten SIGNED by Wally Bronner of Frankenmuth, Michigan!!!! So cool!) Anyway, this cat lover and Christi supporter held "kitty" and said that she didn't think it was a girl. (What do we know? Shayne and I just chuckled.) "Kitty's" first visit to the vet was on Thursday. Shayla proudly held her all the way there and Nan's right - "she's" a "he"!!!! Well, now kitty is not going to be "Sarah" so the kitty still remains nameless. (Shayne and I have frowned at every name Shayla has so far come up with......"Meowy" and "Kitty".) The wonderful Dr. Jami suggested the name "Tolerant" after observing Shayla lug it around the vet's office. Hmmmmmmmmmmmm. Now that would be appropriate!! Shayne suggested coffee bean for a few days while I was partial to "tiger" (I'm a devoted Seneca East fan ya know!). Well, when we told Shayne "she" is really a "he" he immediately suggested Harris. We looked puzzled at him and then he chuckled and said, "That's Sarah spelled backwards!!! (HARAS) " Christi thought her COSI friend, Harriet, would be most impressed - she's the backwards one! Well, "Buttercup's kitten" remains nameless, but Shayne and I do like "Harris!" hee hee! Oh, and the hair is growing back on both of them. They're looking a lot better. I did forget to tell the vet what had happened though and Shayne had dropped Buttercup off there overnight so that she could get "fixed". I think the vet soon saw that it was "human done" thanks to Shayla. I think she has a potential career in the beauty industry! Until that time, HIDE YOUR PETS and your scissors! (Smile)
Also on Thursday, another tooth (#4) fell out of Christi's mouth. This one fell out during school. Christi came down to my room to put it in a "tooth necklace". I have these little plastic tooth holders on plastic strings. Many of our school's students know that if they ever lose a tooth at school all they need to do is come to my room and I give them a special necklace holder to hold their tooth for the day. Christi felt very proud wearing her tooth necklace for the day. She really looks different with all four front teeth now missing. Despite all the poison continually infused in her body, she's growing and we're thankful, so thankful!!
I still can't even believe this happened as I was certain that I was being filmed for "Candid Camera" or something, but it did - all of it! On Friday morning, I woke Christi up for school, dressed her in the dark and carried her out to the van. As always, I was hustling around my classroom putting the final touches on preparing the room while Christi was creating puzzle designs and nibbling on dry cereal. I didn't pay much attention to her. When it was time for school to begin, I sent her down to her room assuming it'd be another normal day and I'd see her at lunch. School started and I was busy working with a small group of students, sitting on a carpeted area of my room. Christi's teacher came in to let me know that Christi was getting sick in the teachers' bathroom. Thankful that the wonderful parent volunteer (who's my best friend's sister) was working with another small group, I gave my group an assignment and took off to help Christi. She soon seemed better and she wanted to go back with her class so she did. Meanwhile I had rotated my small groups and I was working with another group when Christi came back in. She looked very, very pale and her teacher gave me the look that it wasn't going well. Christi sat down beside me for just a moment and then as I sat there on the carpet teaching sequencing and comprehension through literature and puppets she put her head down on my lap and closed her eyes. Suddenly I KNEW she was sick! Oh, my mind went racing with what to do and with what was this??!!!! Shayne had just started back to work 48 hours ago so the "call Daddy when you're sick" policy wasn't going to work now. Oh, this was tough! Well, it did not take a turn for the better. She started to get sick again so with Brenda in charge I went out in the hallway with the wastebasket and Chrsiti. This was so horrible, but then it got much worse......................the school's fire alarm went off!! I wanted to SCREAM, "You've got to be @#$%^*))(*&^^%$$!!!!!!!!!! kidding me!!!!!!!!!!" but of course I didn't. I gritted my teeth and smiled the best I could and told Brenda to line them up and walk them out to the playground while I took Christi, getting sick and the basket outside too. Kids were whizzing past us; it was awful! After all of the students had exited the building and Christi and I were standing there freezing I thought, "I can't subject her to this any longer. It's bad enough to be sick, but to have 300 kids lined up watching you - no way!" I took her back inside the building complete with all of the bells and whistles going off. Then I remembered that Becky volunteers across the hallway on Fridays in Lisa's room. Thank God for Becky!!!!! She took Christi home and Shayne picked her up there so that I could finish teaching for the day. She slept on Becky's couch for a while and the wonderful Becky fixed a great lunch. When Shayne got her home she felt better for the rest of the day and even wanted to go to ballet class after her chemo so she did. Thank you, God! We really don't know what that was all about, but it was very scary to say the least. I pray it was just a side effect from the chemo. And I wonder if Brenda knows that I'm still using her old field commander's whistle that she gave to me my very first year of teaching when I didn't even own a whistle. Who knew she's one day have a son and I'd get to be his teacher! I've been so blessed!!! My class is AWESOME!! It's been fabulous therapy for me and I absolutely dread the fact that I'll be leaving them next month. It's going to be terribly difficult to leave these great kids and not know if I'll be back or not to be their teacher. I'm also thankful that last Friday has been the only day Christi has missed this school year. Praise the Lord!!
Shayla continues to LOVE preschool at Betty Jane. Shayne and I have found it very interesting and have discussed that Betty Jane was set up in remembrance to an Angel child - Betty Jane Freidman. Due to the devastating loss of their daughter in 1935 from a respiratory illness, Mr. and Mrs. John H Friedman vowed to build a lasting memorial to preserve the memories of their daughter, Betty Jane. In June 1957, twenty-two years later, the dream finally became a reality as The Betty Jane Memorial Rehabilitation Center opened their doors for the very first time at Sixes Corners in Tiffin, Ohio. Today, The Betty Jane Center has assisted over 90,000 of the 50 million Americans who have triumphed over their disability. From the Center's humble beginnings 45 years ago, to the current staff of 100 plus, The Betty Jane Center's growth and success is based on its achievements which include: helping individuals recover from a sudden stroke, a loss of hearing, an automotive, recreational, or work-related injury, a learning disorder, the loss of a job, or other situations that may unfortunately, involve you or your family. It's the teamwork and special care our staff of professionals provide, that helps others to regain true independence and live life to its fullest. Thank you to the Friedman family for doing something so very positive to remember your special little girl who watches over you from above, until you can be reunited together forever! Thank you!
On September 23rd it was the first anniversary of when Shayne's sweet friend, Eric, set up this web site to keep our family and friends updated on Christi, to keep her little ears from hearing what she should not and to save us from making many phone calls and continually repeating ourselves. He allowed us to just send him emails so that we could spend our time concentrating on what is important - our daughter. On the first anniversary, his web site for her had approximately 178,000 hits. Amazing! On that day, I sent him the following email:
Subject: happy anniversary! One year ago you created the fabulous web site for our daughter and we will forever be grateful! One year ago we all thought this would soon be behind us, yet we remain marching on and are so blessed because of your efforts and all of the good it has brought. Thanks, Eric! All our love, The Thomas Team Mom
I'm still amazed at Eric's continual hard work on a daily basis for not only our family and friends, but for "The Christi Crew" all over the world. (Thanks, Lee!) "Eric" seems to be everyone's best friend. For example, when we mention "Eric" it appears that everyone knows exactly who Eric is and often folks ask, "How's Eric?" like they know him personally. It's awesome! He claims this has been his labor of love, but I know it's been a huge amount of time! What a sweetheart! I know it's been a TON of hard work too!! Thanks, Eric!
The following is Eric's response to my email:
I told Shayne "thank you" for the anniversary message during one of our post-midnight chats, but while going through the pictures and today's journal realized that I didn't formally say thanks to you, Angela, for remembering. This has certainly been a wild year with many ups and downs (and I'm not just talking about the roller coasters), but overall the most important thing is the site has enabled you all to focus on Christi and getting her better. Any amount of work that I have done is secondary to the real work being done by the Thomas Team in this fight.
A year ago you didn't know me, or Alicia for that matter, when I volunteered to do this for your family and I can imagine that was somewhat unnerving, especially given the unfortunate circumstances. However, as there have been many good things to come of this over the past year, one of these is the opportunity to get to know you and the rest of the Thomas family. Bonding with Shayne at GSB was almost a "natural" fit given our similarities, I'm just glad that we all were able to extend the friendship over the past year.
You all hold a special place in my heart. For the past year I thank you all for helping to show me the strength people possess, the kindness of people when there is a need and to remind me that not everything in life is as important as one may think...
Love ya, Your faithful webmaster
And Shayne's email to Eric talking about Christi's latest interest:
Went to Cedar point today thanks to Angela's cousin. Girls had fun. Me, I rode the dragster. whoa haaa. It was great but short. 25 minutes from start of line to post ride, no crowd at all today. Had a few funnies to share. Christi-your cyber kid- has to do a "How To" project for second grade. Most of the kids were doing stuff like how to make a peanut butter sandwich. Christi (GEEK) is doing "how to build a spreadsheet" yes that's right. Rainman caught me entering insurance stuff on an excel spreadsheet and said "What's that dad?" It was her dream program. Lots of numbers and formula's. She woke me early Saturday because I promised I would teach her how to using the graphing function. Man, you say graph and she is hooked. Like and Addict. She has come up with ways to graph all sorts of things. We worked for 3 hours. She is doing at six with excel what I could do at age 25. Must be your influence, Webman! Shayne
Sadly, I write that this wicked beast of a disease claimed the lives of two sweet, fabulous neuroblastoma fighters on Monday. Yes, two in one day; quite frankly this disease absolutely sucks and I'm sick of it!! Our awesome teenage friend who treated in NYC, Jessica - forever 13, and our listserv friend sweet Dalton (diagnosed Feb. of 2002, declared NED in May of 03 and relapsed in July 2003) forever four joined their loved ones in their eternal home on October 6th. Angel Dalton's web site is: www.caringbridge.org/tx/daltontuorila
Angel Jessica is in Christi's Clubhouse at www.caringbridge.org/mn/jessicalynnnielsen I just chatted with Jessica and her sister and Mom in NYC the day of the power outage (Her Dad had left for home a couple of days earlier). That was also the same day we left NY in August. I'm absolutely shocked and obviously devastated by this horrible blow!! Jessica was NED in July! UGH! Her death came as a total shock! The wonderful Jessica again beat her disease and had just finished her last round of chemo; I thought she was home free - or as home free as you can get with NB. Then the pneumonia set in and now I guess she is truly "home free". With all of the poison sent through this great gal's body over the past three years it appears she just wasn't able to shake the pneumonia. Oh, how our hearts break for her tremendous parents and her sister and for a future that looked so bright for this lovely young lady! Her parents are FABULOUS folks who did everything humanly possible for their precious child who now wears wings and who watches over them from heaven above. I'm so sorry Tony and Laurie for all you've had to endure for three horrendous years and now for this when she finally appeared to be cured. How terribly cruel!! Please know we're praying for comfort for you all and how proud we are to have come to know and love you. Thanks for everything! We love you!
The listserv continues to be a tremendous support for Shayne and I. Also, I wonder how could one fight this monster without the technology we now have?! I can't fathom it! Shayne communicates with doctors and other experts around the country every week via email. All of our appointments and many discussions are conducted via email and the list goes on. Following sweet Dalton's death, his mother posted this beautiful piece on the NB listserv. What a woman!! May God bless and comfort Dalton's entire family as they try to go on living without their precious child to tuck in every night. Katy wrote late one night:
I see that many of us keep the same hours due to this beast we call Neuroblastoma. A moment to ourselves when our babies are hopefully resting peacefully.
Now my time will be spent picking up the pieces of our broken hearts and remembering our precious boy and all the love he brought into our lives.
Thank you all for your tears, sympathy, and just plain understanding. I hope you are all faring better than WE at this particular moment in time.
I hope I can one day soon be more comfort to some of you who may be walking down this road. I pray with all of my heart that it is never so, but that would not be reality. I only wish it would never happen.
Good night all. Love, peace, and prayers.
Little Shayla has been really enjoying attending preschool the past two Sundays at church. Shayne carved pumpkins with the girls on the weekend and planted seeds and decorated the outside of the house for fall. Also, over the weekend, we went to Cedar Point compliments of my cousin, Melissa who had some tickets she wasn't going to be able to use. Thanks, Melissa!!! Because of the chemo, Christi gets pretty car sick (especially in the mornings) so the trip was made slowly with stops and rests in between. Did I mention Shayne and the girls TPed the Bowerman's and Christi's light up shoes tipped off Tim who said to his kids, "I think we're being tricked!! We didn't have light up shoes in my TPing days." Not to be outdone by his awesome wife who pulled in behind me!!! Of course I continued to ask Shayne, "How is this a nice thing to do to a friend??!!!" But in the end we all stood out in the Bowerman's yard, complete with six little kids throwing toilet paper through their trees as we laughed and relived our TPing stories - including the fact that my Dad once hopped into the get away car and really surprised the TPers when they went to leave our home and there was Dad sitting in their car! Hee hee! And of course the MANY stories of Tim and Shayne's TPing escapades during their younger years. What a hoot! I think teenagers in NYC miss out on a lot of fun!! I also can't imagine anyone's parents teaching their kids how to TP! Oh my!! Only Shayne!!
This Monday, as the other school kids were out on the playground I was walking Christi out to leave as her chemo is scheduled to start at 3:15 PM and it runs for about three hours. She knew that the other girls were walking to Girl Scouts after school and she was going to get stuck with a needle and then to be stuck on the couch for a few hours. She had tears streaming down her face as others on the playground shouted, "Bye, Christi!" so sweetly to her. It really broke my heart and I cursed this nasty disease for forcing us to have to do this, yet I'm also thankful that we've been so blessed and that she is still fighting while so many are no longer with us. Following her chemo, I again drove her to her Brownie leader who so graciously did the activities with Christi. She proudly carried her bean bag home that she made with her tremendous Scout Leader. (Thanks, Emily!)
Christi's second grade CCD class had liturgy regarding the rosary at church tonight. While we learned that your rosary is not a necklace, Shayne and I had to chuckle over that one. You see Shayne often wears his rosary around his neck at the hospital. He said, "My pajamas don't have pockets! I'd lose it if I didn't wear it around my neck." Yes, that is true! Anyway, it was great to see Christi so full of life and learning so much. (It was also hilarious to watch her face each time another "Hail Mary" prayer was said and she held up the sign. Yes, Christi - TEN!!! hee hee!) Her religion teacher is fabulous and Christi has learned so much from her! Also, thanks, Mom for coming to Mass with us; I know how much work you have to do.
We're so thankful to have had another happy week enjoying life, our jobs and our two beautiful girls. We've been blessed. Thanks for checking in!! Happy Birthday to Grandma Gear today and also to Grandpa Falter who now watches over us from heaven above. We love you!!!
All my love, Thomas Team Mom - Angela
PS: "Haras" and Buttercups fur is nearly grown out by now! (Whew!)
Christi's Joke: Why do birds fly south for the winter? It's too far to walk!
Christi's Quote: Sometimes things don't turn out the way you want them to.
What's Next? Round #10 of chemo will continue to run all of this week too. It's about three hours each afternoon via an IV drip into the mediport inserted into her chest. Then she'll have a two week break. Shayne has been working with the doctors in Philadelphia to try to nail down a testing schedule for Christi. She has MANY tests which need to be done before her November 2nd MIBG injection and most all of them are time sensitive. At this point we are planning for Shayne and Christi to go to Philly for the testing while Shayla and I remain at home and stay in school. We're trying to keep things as normal as possible for Shayla knowing we will be leaving her again very soon and that will be scary and crushing for us all. We hope to know more specifics this week. Thanks for your continued prayers, support and love!! We'd never make it a single day without you!! God bless you!!
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Shayne & Angela Thomas: email@example.com