Journal Entry

Sunday, October 19, 2003

The Lord said to Joshua "Be strong and courageous. Do not be terrified; do not be discouraged for the Lord your God will be with you wherever you go."

Greetings Christi Fans! Thank you for continuing on this rocky journey with us. Recently, it's been nice and calm, but that will soon be changing! Christi's plans are now scheduled and finalized. She will head to Children's Hospital of Philadelphia on Sunday - seven days. I'm filled with dread, yet I must remain hopeful that somehow this may get to a cure for the wickedest of beasts that lives inside our beloved little girl and at the same time that the treatment itself will somehow not be too toxic or unbearable. She will be the third child in the USA to have this treatment. I have memorized the words at the top of this week's journal entry to keep me strong even though I'm terrified and completely filled with fear for what lies ahead for our beautiful little princess, Christine Shayna Thomas.

Chemo ended last Friday and Christi thrived and loved her hour long ballet class Friday night. I'm really soaking in all of these special memories fully knowing what's planned for the future. Last Saturday morning, she went with her Girl Scout Troop to a special program in Tiffin where she earned two more Brownie badges. (Thanks, Scout Leaders!!) Then in the afternoon she went to Heidelberg College Cheerleading's Little Mascot program. Christi's fabulous teacher, Miss Stiffler, is the Cheer Coach so how could the program be anything less than spectacular?! Thanks, Kristin! Christi had a ball working hard and cheering while Shayla enjoyed um? um? Ahhhhhhhhh - "being cute". (Smile.) Thanks, 'Berg cheerleaders! And Mommy LOVED watching three of her former cheerleaders now cheering at the college level!! Go, Sara, Keri and Savannah!! I'm so proud of and happy for you gals!

From the ball game we drove up to East Harbor at Lake Erie where we met our friends The Bowermans for a little camping fun and then crashed at Grandma Nee Nee's condo since it was so close and the girls wanted to stay overnight there. Sunday was a "Three Grandma Day"!!! We woke up from our overnight at Grandma Nee Nee's (Shayne's Mom) and my Mom (Grandma Nonee) stopped by our house when we returned home Sunday afternoon and then with great surprise our pretend Grandma (former baby-sitter "Grandma" Donna) stopped by on Sunday late afternoon. We are so blessed! Thanks for the wonderful "three grandma day" you special ladies!!

Sunday night I had just fallen asleep reading to Shayla when I woke up to a barking dog. I came downstairs where Shayne and Christi were cuddled up writing poetry. I looked out and saw toilet paper dangling from our trees. I said, "We're being tricked. Let's get 'em!" Shayne went outside to hunt for the Bowermans, but they were too tricky and Shayne couldn't find them. So instead he went to their vehicle and pulled their keys so that they couldn't get away! Good one, Shayne!! They all came inside and I was happy to pour some apple cider for everyone. (And to once again listen to more adventures of Tim and Shayne.)

We had really exciting news last week! Shayla has started reading little books. What a joy to hear her tiny voice reading these little sentences. It's been a HUGE confidence builder for her. Shayla always compares herself to Christi - who is nearly two years older than her so FINALLY four year old Shayla now proudly says, "I'm a reader." She's also been writing and we're able to decipher a bit of the stories she writes. It's very cute! Go, Shayla!

Monday afternoon Christi and I went to meet with a kind gentleman (the same man who did so much with the fabulous Michael O'Brien Concert benefit). He shared many interesting items and stories with us. What a gem! He also presented Christi with a beautiful red rosary which was made by orphan children and blessed by the Virgin Mary on the mountain of Medugorje. It was very moving and special. Thanks, Mike and friends!!

I received the sweetest phone call on Thursday. Carla Wagner (State Representative Wagner's wife and Buttercup's former owner) asked if Christi's First Communion was a "big deal" in the Catholic religion. I responded, "Oh, yes! It's a Sacrament!" She asked if I already had her First Communion Dress and I told her no, but I had started looking on Ebay to find something inexpensive just a few days ago. Carla then said she had thought and prayed hard about it and wondered if she could make Christi's First Communion Dress to hopefully wear for her First Communion this spring. I fought really hard to keep all cheery and chipper as I told her that would be so very special, but I was really telling myself not to cry as I couldn't think of a sweeter nor kinder gift. Unbelievable!! When I hung up the phone I broke down. God's people are simply AWESOME! We've been so blessed! Thanks, Carla!

Christi was recently overheard at lunch time giving a description of how her Mediport is accessed to her friends. She used a grape (to represent the "button" inserted inside her chest) and a fork (to represent the needle) and proceeded to stab the fork to pierce the grape - a very impressive description complete with a hands-on model! She will be a great teacher!! (Smile) And she described it just as plainly as one would describe going to the store to buy a loaf of bread! Oh, what a life she leads! Perhaps next week's lunch time lesson will be blood transfusions, monoclonal antibody treatment or stem cell harvesting. (hee hee) Seriously, every one has been so accepting and so loving toward her. I couldn't have dreamed of a better school for this special child who everyone treats so very normal. Thank you, Seneca East!!

Christi's poetry written on October 13, 2003

Leaves can change color
Each and every way
Almost see them change colors
Each and every day.

Harvest is good
Harvest is great
Because you get
Food for your plate.

On Friday, we learned that another courageous neuroblastoma fighter was called home at 10:42 AM with Mom and Dad at his sides, holding his hands and hugging him. Gorgeous Justin is now cancer free, and no doubt making friends with all of the other Angels who didn't win their neuroblastoma battle, but who won a far greater reward.

May God comfort his parents as they will forever mourn the loss of their precious little boy (Forever 2: Justin, 8/2/01 - 10/17/03). Our thoughts and prayers are going out to the Armenio family as there are no words which could possibly express the way we feel about this horrible event. I'm so sorry that a real cure doesn't exist and that we lost another child to this wicked and evil beast called neuroblastoma.

Also on Friday we stopped at Aunt Marty and Uncle Jeffy's for a visit. Christi tried taming one of the beautiful new miniature horses, but without much success. Then we went on to Columbus where I attended a teachers' meeting at OEA after we checked into the hotel. In the morning, Christi and I went back to the OEA building for a different meeting. Last month, nearly every one of them asked me how she was doing so I wanted my OEA family to see for themselves how fabulous she is doing right now so that they wouldn't worry about her being so sick; she's feeling GREAT, even though it's hard to believe! We've been so blessed!! Go, Christi

Christi enjoyed chatting with the teachers and eating a doughnut and grapes before the meeting began on Saturday morning. The President caught me off guard when one of the first items of business was to seat Christi Thomas as an honorary, nonvoting member of the Executive Committee for the meeting. (Unbelievable!! I was shocked!! That just doesn't happen!!) She didn't even notice as she worked on her new animal origami (Thanks, Michelle B.!!!) but I knew the significance of it and was deeply, deeply moved. Soon I was granted a point of personal privilege. Christi and I went up to the podium and as soon as I started speaking I looked out at my association family's beautiful faces filled with kindness, concern, love and compassion and I couldn't believe it. Then immediately I noticed many of them had tears in their eyes and on their cheeks; it was overwhelming for me and very difficult to go on. I'm not sure exactly what I mumbled to them, but I knew it wasn't going well when I felt Christi's tiny hands rubbing my back. (That's a way she tries to comfort me any time she finds me crying.) And as I walked her across the lobby out to Broad Street where Shayne and Shayla were waiting to go over to COSI, I was again reminded about my lame performance as the six year old said, "Some people are scared speaking in front of people. I don't want to hurt your feelings, but maybe next time you could try a trick to help you. Imagine that you're only talking to one person - like Clifford and it should help you." I'm thankful she's still young enough that she doesn't fully comprehend the seriousness of her disease she merely thinks it's an inconvenience to get hooked up to an IV pole for hours after school. My dear OEA friends absolutely made her day by laughing at her teacher joke and I think she may have received a standing ovation from some, but I simply couldn't look at the large group after we were done but went to thank the Officers and front table folks instead so I could hide. Thank you! As I buckled her into her car seat she told her Daddy that she got to tell a joke into a real microphone. Yippee!! The following is what I had typed out to share at the meeting:

FOR OEA OCTOBER EXECUTIVE COMMITTEE MEETING: I told President Gary I'd just take a minute and I told Christi Daddy would take her to COSI as soon as I was done talking so - good morning to my OEA family! Last month I think I hugged nearly every one of you as you asked how my six year old daughter was doing. Therefore, I wanted to bring Christi this month so that you could see for yourself how full of life, energy, happiness and laughter she is right now. Ever since Christi was two years old she has said she was going to grow up to be a doctor, well Christi was finally able to really start school this year for the very first time and I'm happy to tell all of you that she NOW wants to grow up to be a teacher instead. I know this awesome group would be thrilled if that all worked out! Christi's loving school and loving all of her fabulous 2nd grade classmates and her wonderful teacher. She has only missed one day of school despite having so much chemo pumped into her body for three hours a night every night for two full weeks each month. So we're very thankful! Speaking of thankful, I asked Gary if I could share my deepest thanks and appreciation to you all for showering our family with love and kindness.

Thirteen months ago, Christi and I sat in our local hospital. The sudden and severe pain that brought us to the hospital three days earlier was gone and I assumed we would both be back in school the next day. Well, noon arrived and so did her pediatrician and a nurse followed by a priest and a nun. Her doctor told me that they found a tumor completely wrapped around my five year old precious daughter's heart and all along her spine and I could take her to Toledo, Cleveland or Columbus. My heart took off pounding and my mind went racing, but I calmly responded. "Columbus. I sort of have family in Columbus. "Sort of" have family in Columbus! That was an understatement! You folks are amazing!! Within an hour of getting Christi into her room in walked Jack Chapman - Central's Greeting Committee I guess (hee hee). The next day followed with Becky, Pat and Bill. Soon after was Julie and Gary's wife, Chris as well as Jodi and Lee and Glenda - all opening their hearts and offering their homes. With the tremendous network OEA has in place and the ability to pull together in crisis, you so lovingly sent us many: emails, cards and donations. Thank you! I thank you from the bottom of my heart and we will forever be grateful. And as only this group would understand - standing here in front of you at this microphone this morning saying thanks is harder than any of my experiences negotiating at the bargaining table, nor politely disagreeing with one of our elected state officials, but this is something I felt very strongly about talking to my family in person - so thank you for accepting my deepest thanks!

Next week Christi will go to Children's Hospital of Philadelphia to yet again endure the battery of tests. The future remains unclear; however, one thing is crystal clear and that is the love, family and friendship you have bestowed upon our family during this time of crisis has been deeply appreciated. I've never been more proud to be a union member. I've told people for years that "union" is not a four letter word. Well, indeed I was wrong. Union IS a four letter word and it is spelled L-O-V-E!!! Thanks, friends and family! I love and appreciate you all!

I received the sweetest email from one of the OEA Exec. Comm. members whom I've considered a friend for years. She wrote: "There should be no apologies. Even the fellows had tears welling up in their eyes. I tend to be pretty sensitive, so it's not unusual for me, but I saw several taking out handkerchiefs as you started to speak. It certainly puts the entire world of what we do in perspective. The family piece and all of the surrounding issues certainly help us make adjustment in our own priorities. Thank you for sharing your story with us. It is truly wonderful to see you both full of energy and life."

And this is the joke that Chrsiti told to my OEA friends from at the microphone on Saturday morning. What's the difference between a train and a teacher? A train says, "Choo! Choo!" and a teacher says, "Spit out that gum!"

Love and thanks to you! Have a GREAT week!! ENJOY!!!!!!!!!!!


P.S. Angel Peggy: The girls have been enjoying their "letter" necklaces! Tell your daughter she was right! Very cool! THANKS for EVERYTHING!!

Christi's Joke: The child came home from school and said, "I got in trouble for something I didn't do." Mom asked, "What didn't you do?" The child responded, "My homework!" And many times this week I heard, "Birds can fly, but flies can't bird." hee hee!

What's Next? In seven days Christi and Shayne will drive to Philly. I've made arrangements for our stay to begin on Sunday, October 26th at the Ronald McDonald House in Philadelphia. She is scheduled for three jam-packed days of testing, but it was very, very important for us to get Christi back home so that she could go trick-or-treating in Republic on Thursday, October 30th! (I'm sure her Doctor's were not impressed, but it's not their little girl who didn't get to go trick-or-treating last year either.) I will remain here as I want to teach every single day of the first nine weeks with my precious students and I'm absolutely sick about having to leave after my last day - October 31st. My class is AWESOME!! On Saturday, November 1st Christi will make her second Sacrament - the Sacrament of Penance as she will make her first confession with Father Joe in Attica before church. We really wanted her to do this before we left and her class isn't making theirs until later in November so we thank CCD teacher, Sandie L. and Father Joe for letting her do this early by herself. The next morning, we will leave for Philly to actually begin her treatment. We will start talking with her about it this week to help prepare her in an appropriate manner. We've yet to schedule and finalize plans for Shayla's care, but she is not permitted to be with us during the actual high dose MIBG treatment period so we must leave her here where she will remain in school and ballet and be well taken care of by loving family and friends. We've had some frequent flyer miles donated to us so Shayne and I are discussing having me fly home to be with Shayla for about five days or so in between Christi's actual radiation treatments so that our other precious little one (Shayla) does not feel abandoned. We would take her if we could and we will get her reunited with us as soon as possible!!! The Thomas Team is not complete without little Shayla!! (These decisions are really tough medically and emotionally.) Thanks for everything!!