Journal Entry


Thursday, September 18, 2003

God answers knee mail.

Greetings friends! I hope this finds you well! Thank you so much for checking in and keeping up with Christi's progress. Every time I look at the number of hits on wonderful Eric's web site for Christi, it reassures me that we're definitely not alone in this battle and that kind folks are continuing to pray for her cure. Thank you for your continued support and remarkable dedication to our precious little girl!! Shayne and I are filled with gratitude and appreciation to you all!

The saying at the top of my journal entry this morning was posted out on the sign in front of St. Joe's church and it made me chuckle as I entered the gorgeous church last week. I went on Thursday to pray and to light a candle for our friends back in New York. With great devastation I learned that Robyn, 7 years old and the little sweetheart from England, has relapsed with neuroblastoma (relapsed for the second time). She has been through two treatment protocols (including two stem cell transplants) and it appears dismal at best. Her parents are the sweetest folks with the sweetest accents and our hearts are completely broken knowing fully what lies ahead and knowing fully what financial difficulties they also have. We have hope because Robyn has twice before beaten this beast and we have hope that she will do it again - this time forever! The third time's the charm, Brooks'!! Go, Robyn, we love you dearly!!!!! Karen and Garry, please know that we fully support you in any decision you make. You are FABULOUS parents and it would be a wonderful planet if ALL children here on earth would be so blessed to have incredible, loving and dedicated parents like you two. We miss you four! (hugs and tears, Angela)

Upon entering St. Joe's church I heard the rosary being said. Much to my surprise, was a class I believe to be about middle school aged students all praying together. Having never attended Catholic schools, it was a most impressive sight and sound. I joined in. After the rosary I felt compelled to go up and to compliment the teacher on her well behaved class so I did. And I told her that she should be very proud of them. I also gave her one of Christi's "Spirit Club" cards and asked if she'd please have her class pray for Christi too as I know our loving God hears our precious children's prayer requests. I then lit a candle for beloved, sweet Robyn and her family before heading to school to get Christi home to start her chemo with "Doctor Dad". We first met Robyn early in January when she was going through transplant and Christi was inpatient at MSKCC. Her web site is in Christi's Clubhouse too. All of our love and hope goes out to the Brooks family!! We will continue to pray for the miracle she needs. God, please hear our cries. This sweet family hasn't been home or even in their own country for about 17 months; let them go home with both daughters healthy!

Also last Thursday, I had the pleasure of meeting two of the wonderful individuals responsible for the Michael O'Brien benefit concert at St. Mary's last night - a benefit for Christi and for Mercy Hospital of Tiffin's new Radiation Therapy Center sponsored by Health Ministries of North Central Ohio. And what a pleasure it was! Sharon and Mike were absolutely delightful and made me feel so comfortable; I thought I was chatting with old friends. They shared with me some of the very special things that have happened as a result of their hard work for the concert benefit and while I always am thankful for how blessed we've been during this battle, hearing about generosity and kindness was awesome and uplifting to say the very least. I thank them for all of their time and hard work in putting together an extremely successful and happy event.

"Where There is Great Love, There Are Always Miracles." - Willa Cather

Concert organizers, Mike and Sharon (brother and sister - so cool!) hoped for this benefit concert to be an evening filled with great love. How about 700 people jam packed in a church that holds 650 with great love, Mike and Sharon?!! To look up and see adults and beautiful children lined up side-by-side in all of the pews and even in the balcony, was very heartwarming to say the least. We felt totally surrounded by kind folks who have literally worn out their knees praying for Christi to be cured from this wicked beast. Someone commented that there wasn't an empty seat in the house. We've been so blessed!!

Speaking of last night's Michael O'Brien concert - WOW!!! Talk about uplifting and inspiring - it was TREMENDOUS!! He is amazing!!! We started the evening just Shayne and I with my Grandma, my aunts and my Godparents behind us while Christi was at CCD. Michael was singing beautiful, serious songs. Tears were dripping like a faucet as I kept thinking as I sat there in the front church pew without Christi beside me, "Is this what her funeral will be like without her sitting beside me up here in the front of church?" Then the next thing I knew, Christi and Lisa walked in and Michael dedicated a most powerful, upbeat and wonderful Christian rock song to Christi "Thank God for You" and the entire mood changed for the remainder of the evening.

Much to my surprise in church, my face bore a smile that never left and my tears were immediately transformed into laughter as Michael sang and ran around with water misters and cups of water literally soaking down the crowd in the hot church. (Doesn't he know Mrs. Rombach does this to her students and even has me doing it to my kindergarten kids now on hot days?! Maybe that's where he got the idea? hee hee) Michael presented Christi with a beautiful bouquet of six (She's six!) red (for love of the evening) roses. So special!! He also lifted her up for the crowd to see when she first arrived and the wonderful, loving, supportive crowd clapped and clapped and clapped and clapped and cheered for little Christi. Michael later told me that when he was holding her up like that so people could see her it was just like he was holding his little sister, Kim - but he couldn't say that to the crowd in front of Christi. You see Kim, Michael's little sister, died when she was also six years old. He wrote a song about it as he feels Kim is always with him and has turned his life around to the Lord now that she is an Angel. It is entitled, "The Angel for You". (Both of these songs are on his "It's About Time" CD. I've listened to the CD over and over. It's wonderful!) When she returned to our pew after being held up in the air she was so happy and said, "It was like he was Rakifi and I was the Lion King." I didn't tell her that I was reflecting on the applause in church (something very rare in a Catholic church!) and that I know of a few angels who have actually received tremendous applause and standing ovations as their coffins have been rolled out of the church for the very last time; I was praying so hard that the next applause I hear for Christi in church will not be at a funeral mass, but instead will be at her "I'm Cured! Let's Praise the Lord!" party.

The evening could not have been more perfect nor the crowd any sweeter!! Following the concert, Christi had a long line of supporters and well-wishers even ask her for her autograph. While we didn't know any of these people (except for a few wonderful Aunts of mine who snuck in the end of the line!) it made it even more touching that young and old alike wanted to give her some special attention in which she glowed. While I was mingling with others, Christi estimated that she signed about 15-20 autographs. We'd like to thank Mike, Sharon and all of the sweet individuals and community folks who donated, prayed and worked hard for a most successful evening filled with loving memories for our family. The organizers goal wasn't to raise funds, but to raise our awareness of the love that surrounds us and the goal was obtained! If you ever get a chance to hear Michael O'Brien sing and listen to his testimony, you won't be disappointed. "That was so fun!!" was heard from the back-seat driving home. "What?" Shayne asked fully knowing what she was referring to. "The whole evening. Everything was fun!" responded Christi. Thankful I am that Christi remains feeling extremely well. She loved trying to catch the light's from Michael's lighting effects. Christi wore a beautiful short sleeved velvet dress with a fancy skirt last night. I thought she looked like a million bucks - even if I did buy her dress for a couple dollars at a garage sale.

And a most special thanks to Grandma Nee Nee for staying home with "active" Shayla. (We thought that 1 1/2 hours of a concert would be a bit more than Shayla could handle. She much prefers Grandma Nee Nee as they're big buddies and she didn't have to sit and be quiet at all! Grandma Rocks!!) Also, sometimes Shayla becomes jealous over all of the special attention Christi gets as Christi used to get a lot of cards and presents in the mail. It's hard on Shayla. We have a family rule that after you open a toy and play with it once, it's then a FAMILY toy for EVERYONE to share and to play with. Well, you know Christi - the brains of the family, sometimes she'd leave a toy that looked fabulous just sitting there for days until Shayla's desire to play with it wore off and then she'd open it and play with it all by herself at Ronald. Thanks again, Grandma Nee Nee for baby-sitting.

And thank you to Lisa Rombach for picking up Christi at CCD (Catholic religion class) and driving her to the concert at St. Mary's church so she wouldn't have to miss CCD that she has fallen in love with. It was fabulous to also see my Grandma and Mom and Joe and my aunts (Mary S., Mary H., Joyce B., and Marty K.-my Godmother) as well as my Great Aunt - Sister Mary Alice and Uncle (my Godfather) Keith and Cousin Jenny and so many other friends I noticed in church who've stood beside us in this great community throughout this long war. It's been a long battle and to see faces who've helped us "behind the scenes" in ways we'll never know was quite profound!! Let's pray that one day we look back at last night and know that that was the day of Christi's miracle!

This was printed inside the concert program booklet:

Christine Shayna Thomas, six year old daughter of Shayne and Angela (Falter) Thomas of Tiffin was diagnosed with neuroblastoma - a rare childhood cancer on 9/11/02. Her cancer has no known genetic nor environmental causes and is very difficult to treat and to cure. Over the past 12 months, Christi has endured nine rounds of chemotherapy, four rounds of painful monoclonal antibody treatment, two surgeries, over sixty days of hospitalization and nearly sixty blood transfusions - almost all of her treatments took place 550 miles from her home. Despite it all, this little blessing from God remains full of life and energy continually inspiring those around her with her positive attitude, faith, laughter and love for life.

This tremendous community must be commended for all of the prayers, love and support bestowed upon the Thomas family during this most difficult time. We wish Christi with her zest for life, beautiful smile and endless laughter, the best as she continues marching on in her battle. And we remain committed to praying for her full and complete healing so that the little girl, who has captured our hearts, will be a testament to God and to the miracles He performs. Thank you for your attendance, prayers and support. God bless you!

On Friday, during ballet class, Christi lost her third tooth. I have now been joking with her, "I thought you were going to ballet class, but I guess it is boxing class." hee hee. This (top) tooth was put into the tooth pillow Mrs. D. (from preschool) gave her and because we stayed at Grandma Nee Nee's for the weekend, the tooth earned her one dollar and twenty five cents. Wow! (I urge children to try this as it nets a higher value than from Mom and Dad. hee hee. Thanks, Nee Nee! Thanks for a fabulous weekend and everything else too! We love you!!!) Her school pictures were this week (First school pictures since preschool!) and she was proud to have a toothless grin to show. And thanks to the Conn's, our neighbors, as Christi wore one of Elizabeth's beautiful pink shirt that Elizabeth outgrew.

Sara, the new kitten, and school continue to be the biggest joys of our lives. Shayla loves carrying the now four and a half week old kitten around the house even though she makes us really nervous due to Shayla's energy level and constant activity. Christi last week threw up most every day before school (Praise to God for the fog delays!) and once at school and a few times at Grandma's, but still she wanted to go to school and she didn't want Shayne to take her home early when I offered. She will be off of chemo for the next two weeks so she should be feeling much, much better. We hope her blood counts remain in the normal levels and of course we hope and pray that her disease stays stable or is diminished as a result of this latest two week round of chemo. (low dose Irinotecan - round #2) We will really, really enjoy these two blessed weeks of living "normal" lives free from the nightly infusions of chemo. even though our fears will never really depart our minds. My kindergarten class is absolutely fabulous! (I know I say that every year and I know I'm bias, but it's so true! Our school's kids are the greatest!!) A classroom is always a delight with so many eager, bright and well-behaved learners sharing the room and with so many helpful parents volunteering to assist me. I'd never make it without them. I've accomplished so much in such a short time with my little friends and I'm thrilled, honored and humbled to be their teacher.

On Monday, on my way to my NWOEA teachers meeting in Findlay I stopped at the cemetery where my Father is buried. I always stumble around a bit before I actually locate his tombstone (They're all flat on the grass at his cemetery so it's hard to find the headstones.) and Monday was no different. What was really funny though was I stopped walking to look around for his stone and when I looked down I noticed I was standing right on top of Dad!! Knowing what a quiet, little jokester my Father could be, you know why I found this so funny. And immediately it was like I heard him joke with me, "So now you're walking all over me!" (Smile) While I thought it would be another somber little talk with Dad about Christi, I spent the time reflecting on all of the jokes Dad use to pull.

CHOP called again this week. We appreciate their perseverance and we fully understand that they need to know what we are doing so that another neuroblastoma child can be scheduled to receive his/her MIBG trial if we are not going to take the September 29th slot. We know it's chancy, yet we still want to postpone for one more month to fully soak in this "normal" life we're currently living and LOVING!! Therefore, we are tentatively scheduled to the MIBG treatment on November 4th, with testing being the full week prior - last week of October. This would be perfect and what we had originally been told. Now we continue to hope and pray that this works out, is successful and that we won't have any regrets about not rushing her there earlier. It's palliative care so since her disease appears to be stable at this moment we don't want to rush into the next attempt at intensive high dose treatment with the internal radiation making her radioactive. These decisions never get any easier, perhaps more and more difficult.

It is with overwhelming sadness that this disease has claimed yet another precious child. Katie, forever four, officially earned her wings last week and was buried on Sunday one month before her fifth birthday. Katie, a brave and courageous fighter to the horrible, painful end may not have beaten neuroblastoma but she earned a far greater prize, the prize all of us yearn for - the gift of eternal life. God bless you, Katie and may God wrap your family in His loving arms and give them comfort and strength to go on without you - the joy of their lives! Katie's web site is: http://www.caringbridge.org/in/kaylen.

With what is often a neuroblastoma death each week, I reflect upon many things and most every night have difficulty sleeping as a result. I'd like to share a beautiful essay written by the Mom of Sarah. Sarah is 8 years old and like Christi she is still fighting neuroblastoma and trying to get to a NED status. She is in Christi's Clubhouse at http://www.caringbridge.org/nc/sarahsmith.

The wonderful Smith's are definitely a interesting family with an absolutely fascinating background. They spent the past fifteen years traveling full time doing approximately 160 church concerts every year. Sarah and her big brother, Nathan, have been on the road with their parents since they were born and have been to forty states. For the past seven years, the family has lived year-round in a 45 foot, 2 bedroom RV pulled by a semi trick. They've recorded 13 CDs of original music. When Sarah was diagnosed (May 17, 2002) they left the road to dedicate themselves to doing everything possible to get their precious gift from God - Sarah well. (Neat story, eh?!)

Anyway, Becky (Sarah's Mother) is also a talented writer and she wrote UNSHACKLED ANGELS which I'd like to post here as it says a lot about what I and I'm sure all other neuroblastoma parents, can related to. Thanks for letting me share this with Christi's supporters, sweet Becky! God bless you and I can't wait to get your latest CD - which also features Sarah singing on it, so cool!!! And NO, Becky, you won't play that song at her funeral, but at every graduation celebration instead!!!! Go, Princess Sarah!! We love you!! Keep fighting honey!!

UNSHACKLED ANGELS by Becky Smith, Sarah's Mom

Two girls whose stories I have been following died of neuroblastoma this weekend. It was sobering to hear of their deaths and to be slapped in the face again with the reality that they died from the cancer my daughter has. Medically speaking, her chances of survival are no better than theirs were; in fact, her chances are no better than any of the children I have heard about this year---child after child after child who has died from this horrific disease. In the backs of our minds, all we neuroblastoma parents know the odds of survival are highly unfavorable for our beloved children. And yet it's not something we can dwell on or ponder at length because our emotions are telling us that it's time to rejoice simply because our children are still with us, breathing, eating, laughing, LIVING! That is all we need for right now.

I'm having a hard time picturing Sarah in the scenarios I've reading about lately where rapidly spreading disease takes over the body in just a short time and brings about immense suffering and pain. Hospice, morphine, seizures, grief, a child's cry of agony-- there's at least one family somewhere out there today walking the final steps of this cancer journey and experiencing those very things; they're experiencing the beginning of the end of the life of their child.

But my emotions cannot go there right now; instead I'm going to concentrate on this afternoon when I watched my "seriously ill" daughter wolf down a huge lunch and ask for seconds. I saw her tease her brother, chase her dog, and run up and down the stairs to her room. Earlier today, I saw her don a frothy, frilly dress for church, brush her hair and put in a pink hair band with a bow. I watched her walk down the hallway to Sunday school, nonchalantly swinging her shiny purse and Bible and waving to little friends along the way. I watched her saunter along and my heart drank in the sight; I watched her little curly head disappear into a Sunday school classroom and I lingered just for a minute to inhale the perfume of the joy that she always leaves behind.

I know very well how quickly this disease moves and that in as little as a couple of months she could be gone. But I also know that her disease could remain stable and she could survive for many years. It's a strange place to be - embracing the hope and joy of the moment and dreading the fear and pain of the future, all the while trying to keep my sanity and to hold on to the peace that God promises.

But for today I will put other thoughts aside and honor the memory of two sweet angel girls who died from a disease I wish I'd never heard of. Today is a day to pray and hope and wonder; it's a day to hold my silly, frilly princess close to me and to be comforted by the steady rhythm of her heart.

This monster called Neuroblastoma may very well think that it's winning the battle. However, Neuroblastoma doesn't have the power to shackle the angels who are swiftly winging their way toward the smile of heaven, angels who are sailing away to a place where every little one is at peace, far from needles, chemo, morphine and tears cried in the shadows of a lonely hospital room.

I'd rather Sarah not fly to that place anytime soon, but I'm so glad that whenever her time comes, she'll be ready. She told me recently that even if she dies as an old lady, her wish when she gets to heaven is to be eight years old again. It truly is a wonderful age and whether she lives it out here on earth or up in heaven, she will be extravagantly loved and she will be in gentle hands. And to all the children who have already made the journey--be watching at the gates to welcome into your world of joy the little ones who are yet to come. And if Sarah should ever be among them, tell her that her mommy is still breathing in the perfume of the joy she left behind.

Again with this entry I will state that September is National Childhood Cancer Awareness month. With this journal entry, I will ask that you please take just a moment to contact your congressman regarding childhood cancer. While I think it's FABULOUS that little 7 year old Alex Scott (treats at CHOP) has been featured in Sports Illustrated, Time, Parenting, People, Time For Kids, The Today Show, The CBS Early, CBS Evening News, USA Today and Good Housekeeping for all of the hard work she has done to raise money for her and other kids' cancer cures, and she has won the Volvo For Life Award, The Philadelphia Foundation- Philanthropist of the Year, Philadelphia 76ers Hometown Hero and an official commendation from the State of Pennsylvania, I think it's absolutely horrible, downright disgusting and a total shame that kids are having to have lemonade stands to try to raise money for their own cures because the funding for research for childhood cancer is so very, very sparse!!!!! That is not right!! Children are our future and together we can change this. PLEASE write a quick note to your congressmen. Thanks to my OEA upbringing, I know to encourage you by including sample language and talking points to make it really, really easy for you to quickly write and to sign your name and send. I'll also list addresses to make is E-A-S-Y. If you need a stamp, just ask and I'll send ya one! (Smile.) Thank you!! Did I mention the fact that if you won't do this, no one will? (I'm serious!) Perhaps if the politicians' desks were bombarded with letters asking for increased funding for childhood cancer, it would happen and the little lemonade stands could be held for something like they were really designed for like scouting, sports or church activities. While I know it's too late to help Christi, no child should ever have to live this life. Research should not be halted until there is a true cure for every child! So again, please contact the offices of your Congressional representatives to ask for support of increased funding for research into childhood cancer, and improved policies to benefit children with cancer and their families. Childhood cancer rates are rising and it truly makes me sick to learn about another new diagnosis and of course the fear that it could be "my" niece, student, neighbor or friend's child next. Ugh! Please, please take a moment to do this. Here are some facts and ideas to get you moving:

America Needs Increased Funding for Childhood Cancer Research:

We seek increased federal funding for the National Institutes of Health, the National Cancer Institute and other major research funding agencies for research into the cause, cure and prevention of the cancers of children and young adults.

We urge individuals, corporations, organizations and foundations to increase their support for biomedical cancer research.

We advocate that research into the cause, prevention, treatment and cure of childhood cancer become a higher national health priority. Cancer causes more childhood deaths than any other disease.

Despite progress, major challenges remain in the prevention, detection and treatment of childhood cancer.

Little progress has been made in the prevention of childhood cancer.

Attempts to detect childhood cancer at an earlier stage, when the disease would react more favorably to treatment, have largely failed.

Several childhood cancers continue to have a very poor prognosis.

Cancer kills more children than any other disease.

If you need the address to your Congressman, please click on this site and then type in your zip code and state. Thanks from the Thomas Team and thanks on behalf of all of the children yet to be diagnosed. A cure should follow them ALL!!!

http://www.house.gov/writerep/

Finally, please keep all of our Angel children and their parents and all of our courageous cancer fighting children in your prayers. They are all so deserving of winning their battles! Thank you for everything!! I'll post again next week, or sooner if something happens - and in the world of neuroblastoma we certainly like nothing happening!!!! (Smile.) Thank you!! Take care!!

In His love, Angela

Christi's Joke: Why did the bubble gum cross the road? Because it was stuck to a chicken's foot! (I must share that Christi had a blast entertaining Blythe and Great Uncle John at Nee Nee's last weekend. She probably whipped off 20 jokes in a row while we all chuckled at her remarkable ability to do that without stumbling.) And driving home from the benefit concert, Shayne asked, "Are you thirsty?" Christi responded without missing a beat, "No. I'm Friday!" hee hee heeeeeeeeeeeeeee!!

Shayla Update: Shayla is now learning to read three letter words, but of course Shayla has to do this in her own "sweet" way. At Grandma's Christi was helping Shayla sound out words by using a bag of little cookies shaped like the letters of the alphabet. (Shayla is our "unhealthy" eater of the family - always preferring sweets despite our insistence of eating healthy foods so naturally this cracked us up as of course Shayla wouldn't learn to read any other way. hee hee)

From Christi's Journal at School (Christi's teacher, who also happens to be a friend of mine, recently shared with me Christi's journal. While I know I'm not supposed to know what's contained in it, it had me laughing hysterically so I simply must share it with you because it is an absolute hoot! I'm glad Kristin has worked so hard inspiring Christi to write. Again this week another teacher friend, the awesome Mrs. Rombach, also worked with Christi as they wrote about the new kitty in our home and the animals in Central Park that Christi took pictures of during what turned out to be our very last trip to Central Park. Thanks, Lisa! You are a gem! These ladies have so richly blessed us.)

Response Journal by Christi 9/3/03:

Christi Writes: My Mom taught second grade just like you. She loved it, but she loves to teach kindergarten more. I wonder how good a teacher she was. She also taught first grade. I think that is cool. I make a good helper a lot when she is working.

Teacher responds: I think it is so neat that your mom has taught 1st grade and 2nd grade. Did you know that she even taught in this same room? I'm sure the room has changed a lot since then. My mom is also a second grade teacher. I enjoy going into her classroom. I used to help her all the time when I was little, just like you help your mom. I think that is why I always wanted to be a second grade teacher! Why do you want to be a doctor?

Then Christi writes back another day: I do not really want to be a doctor. I want to be a teacher more. It is funny that we all want to be teachers. Speaking about funny, once I squirted the drinking fountain so high that the water went right into the trash can. Now that is funny. I like to make up my own origami.. I also know how to make a paper plane without messing it up because my mom taught me.

Teacher responds: What kind of origami do you make? What other things did your mom teach you how to make? Those moms are just the best. My mom's birthday is actually this week. My family and I have a big surprise for her this weekend. It is going to be great! I heard you are going to Lake Erie this weekend. We are too! You will have to tell me about your weekend at the lake.

Christi Responds: 9/16/03 My mom is not a good creator. She actually made up how to make a paper airplane. I know how to make 3D sailor hats! That's why once I did a treasure hunt. My mom and my dad do drawing contests a lot. It isn't that fun anymore because I know I am going to win. My favorite animal is a cat. What's your favorite animal? I like to help my mom. It is fun once you get used to it. I went to Cedar Point with my mom and I rode lots of rides like the Wild Cat, the Iron Dragon and even the Gemini. The Gemini was scarier than mommy thought. She did not want to go again, but I wanted to go again. I love it! We are going to trick or treat at Cedar Point. I really want to do that so does my mom. They took out the bumper cars and put in a haunted house. I think that is why they took out the other old haunted house. They are putting it back in.

Christi's Tongue Twister completed at school last week:

"Cutie, the Cat"
Cutie, the cat, jumped into a clean car with caterpillars. A cop caught Cutie with a can and off she went. Cutie cried and soon she was at a classroom. Cutie jumped off. by Christi Thomas

What's Next? Tonight Christi will attend the Grandparent Event at school with her Grandma Nee Nee. We're hoping for two normal weeks free from the nightly infusions of chemotherapy. We hope her blood counts remain normal and that transfusions won't be needed. We pray that her disease remains stable, or decreased and that progression (our biggest fear) doesn't take place. We continue to pray that the upcoming MIBG treatment in Philly now scheduled to begin November 4th with a full week of testing the week prior (beginning October 27th) will be the answer to our prayers of ridding her bone marrow of cancer and that then we will be able to continue marching on with more treatment instead of this palliative care to a victory over this devil of a beast - neuroblastoma. Goodness shall prevail! Thank you, friends! We appreciate you more than words could ever state!!

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