Journal Entry


Wednesday, July 21, 2004

Those who HOPE in the Lord will renew their strength. They will soar on eagle's wings; they will run and not grow weary. They will walk and not faint.

Isaiah 40:31

Dear Friends and Prayer Partners,

Hello! All is well! Thanks for checking in! We've been B-U-S-Y and we couldn't be any happier! (bike riding, swimming, YMCA camp, reading, another great Bible School experience, staying up too late, roasting marshmallows over the backyard fire ring, playing with the neighbors - life is good! Rich blessings continue to flow!)

When I last wrote I assumed that Christi's counts at the hospital on Monday would have been high enough to permit her to start round #3 of this new oral chemo experimental study. Of course, I was wrong! Her ANC was 1300 - not high enough. But on Friday, her counts were improved! Hgb. 10.9, white 2.8, platelets 91 (decreased) with an ANC of 1600. YES, Lord!!!!! So she started the chemo Friday afternoon after 23 days of no treatment. (YIKES! Now that's scary and a definite "no no" when one still has disease!! It feels GREAT to be back in the saddle again!) She will swallow these pills for 21 days straight, be seen weekly by her doctor and have twice weekly blood vials drawn from her arm at the hospital. I've just arranged a testing schedule back at good old CHOP for the first week in August and since the flights had gone up from $177.00 each ticket on Sunday to $242.00 today, I booked our two tickets at that rate before the princes went any higher. We'll fly out of Toledo to make the quick 2-3 day journey, but these are good "problems" to deal with in the world of cancer! Scheduling we can handle; disease progression we can't! (smile)

It is with great sadness, that I share the deaths of two little princesses who died last week. Little Miss Zoie, www.caringbridge.org/la/zoie - yet another victim of neuroblastoma. I found it so sweet that when her parents were told that she was going to die very soon this precious little child of God didn't want to return to her real home because she had lived in the Ronald House for so long she wanted to stay there at the Ronald House. I was so happy that those great Ronald folks allowed her to do just that!!! God's people are good!! And a beautiful 8 year old - Michaela, from Pennsylvania, who relapsed months ago and then attempted the MIBG treatment at CHOP like Christi did, gained her Angel wings exactly one week ago. Unfortunately, she had been enduring such horrible pain and suffering for so long. The new picture her sweet Mom posted on the front of her web site of her last days is a graphic visual description of how wicked and evil this beast is as it literally eats away our once beautiful children from the inside out. This darn disease is tremendous evil!!! Beautiful Michaela loved balloons and her wonderful Mom asked on Tuesday that we release them before she died so that they would be waiting for her when she arrived in Heaven. She died on Wednesday. Michael's web site is in Christi's Clubhouse at www.caringingbridge.com/pa/michaela. I shall never forget trying to hook up with Michaela's Mom at CHOP. I'd email her each night with what I'd be wearing the next day so that we could meet in person after only emailing and not knowing what the other looked like before. She responded back each night, "I'll be wearing whatever is at the bottom of the dryer!" so cute! May God be with these very special families with beautiful daughters who will forever live in hearts and minds. Our prayers are with them.

I know I don't typically share the sad news of relapses because with neuroblastoma they are so very, very common, but this young man is very special to us. Sadly, I share with you now that the news of a sweet young man's progression of this most wicked beast and we ask for your prayers for a miracle. We first met Mason, who had been diagnosed within weeks of Christi, and who had also been in treatment at Children's in Columbus when Christi's cancer was also just discovered. Unfortunately, his disease never fully responded and he had not gotten NED either despite finishing his protocol. His sweet mother, also a teacher - just like his awesome father, said to share this information with anyone who has been following Mason. Because we only live just about one hour from each other, many of our family and friends know about this great guy and have been praying for him. We're storming heaven for what I've named, "the Ream Team" as they prepare for this latest uphill battle and the many decisions they'll now make in deciding what is the best thing to do.

I finally got around to returning Nick and Shayna's Country Time Lemonade Stand this week - 2 1/2 weeks after the Lemonade Stand. They live about ten minutes from our home. As I was walking into the house from the stand's return minutes earlier, I heard the telephone ring. It was Hospice calling. They had been contacted by some who weren't able to go to Christi's Lemonade Stand because of the poor weather, so they wondered if Christi could set it up again during the blood drive she's helping Hospice and the Red Cross with on Saturday, August 7th. OF COURSE! She'd love to and what a great cause! Hospice told me that they didn't want to appear to be "using" Christi, but I explained that we all know where we're headed with this ugly disease and it's best to establish a good working relationship now when things are going well. So, if you'll be coming to donate blood at Hospice on Saturday, August 7th be sure to call 419-447-4040 (or 1-800-834-8100) to schedule an appointment and know that the Fabrizio's kindly offered their stand to be borrowed again in case anyone is thirsty. (smile.) Hopefully, Christi will still be feeling fabulous and will be able to hold hands and pour lemonade for anyone who is coming to give the precious gift of life. She will have just returned home from CHOP about 1:00 AM that day/night! smile.

Speaking of Christi & Alex's Lemonade stand, some more money arrived making the total that Christi was able to send to Alex's Lemonade Fund $3,672.77!! Praise God!! Alex's parents shared some absolutely tremendous news recently. On the phone Liz told me that a huge casino in Las Vegas, along with a TV show called "The Apprentice", were investigating doing something to help with Alex's cause, but nothing was final yet. I prayed that this would somehow come about and would push Alex's way over the $1 million amount! Well, now it's final and I think she may definitely reach her goal soon. Read on from Alex's Mom, Liz:

Last week we received a wonderful phone call from Caesar's Palace in Las Vegas. They are opening a lemonade cart on the resort's new five-acre Roman Plaza and donating the sales (no expenses deducted) from the first month to Alex's Lemonade Stand Fund for pediatric cancer research. This is an incredible opportunity for the Fund to continue to climb towards Alex's $1million goal (she is over $600,000 now). The President at Caesars as well as the entire team working on this project have been so generous and accommodating, they are making every effort they can to raise money for Alex's cause. In addition to the donations from the first month's sales, they planned a huge ribbon cutting for today, with a special "lemonade auction for charity" by Sam from The Apprentice. The grand opening was today, complete with the lemonade auction - they had already raised over $25,000 before they opened for business thanks to some large donations from some very famous celebrities. We are so grateful to Caesars for making this happen! We will be sure to let you know how much they raise over the next four weeks. There are still donations coming into Alex's stand daily. Hundreds of children across the country have held stands for her cause; it is really moving to receive the letters and photos showing how much caring and effort they put into their stands. Also, last Friday CHOP sponsored and staffed Alex's Lemonade Stands in various locations throughout the hospital. It was a hospital wide effort – complete with "Thanks Alex" t-shirts for all oncology staff as well as other staff members throughout the hospital, cards signed by staff and patients, and decorations and signs throughout the hospital. The stands were staffed by various hospital employees and raised an impressive $46,000, which included a $20,000 donation from Wawa. The money will be applied directly to specific research projects that will help doctors to find better treatments and to improve survival rates for children with cancer. Thanks to all of you for making it possible and making a difference.

Pretty cool! Thanks for sharing, Liz! Way to go, Scotts!!!! Come on one million dollars!!!

Tomorrow the Thomas Team shall load up the van and drive to Chicago for the 3rd annual Neuroblastoma Conference - started by the parents of yet another innocent child - a victims of this beast yet we know cancer didn't win - he did by receiving the eternal gift of life in Heaven above. We've received a scholarship to pay for our three hotel room nights at the Hyatt downtown and the conference is free. (Yahoo!) This is where Shayne met Dr. Maris from CHOP last year - praise God for Dr. Maris and his work in neuroblastoma. (Christi and I stayed back in NYC as she was undergoing the terribly painful 3F8 treatment - and also received tickets to the American Ballet at Lincoln Center!!) Shayne and Shayla LOVED the American Girls Store in Chicago, so we're all set to see their theater production and to have high tea there on Sunday afternoon before returning home. We've been rereading all of those great books and actually have a timeline of the girls and their time period of life taped to our bedroom wall. (Yes, taped to our wall. Ya see, cancer has taught us that some things are more important than paint and the girls had a blast and learned a ton with this great project!) I'll list information about the conference below so that any neuroblastoma parents who may be reading this will consider attending next year. (They also provide free child care and this year there will be some neuroblastoma survivors helping out in that room! That gives us hope that Christi will one day get to do that too!) We believe that education is instrumental in trying to "slay this dragon" and education (along with heavy divine intervention) is why Christi is not only with us, but is here doing so well! I cringe to think where we would be if we would have sent her into transplant with disease as some suggested - prior to going to NYC where we learned that doing that was a serious mistake. I'm thrilled God has lead us where He has even if things dramatically change soon; she has had an absolutely incredible quality of life and we'll forever feel blessed by this richness of His gifts!!) Also, we're anxious to meet some more leading doctors and to learn about some trials that we've not yet researched. We're excited to meet in person many of the members of our Internet support group as well as to give real (instead of Siberia) hugs to our old NYC friends.

During our time at the neuroblastoma conference, July 24th will come and go. July 24th - not only the birthday of my beloved, deceased father - Vince, but also the wonderful, terrifying and emotional day when Dr. Michael LaQualia of MSKCC in NYC fully removed Christi's tumor which had progressed during the 3F8 monoclonal antibiody/beta glucan Phase I study from around her aorta and along her spine without causing any damage to any other parts of her body! It's been a long year since then, but I still vividly remember being "home" (aka Ronald McDonald House of NYC) less than 24 hours from her Make a Wish trip to Japan and Hawaii, her being wheeled into the operating room holding her stuffed dolphin and when the doors closed behind her immediately hugging Shayne as we clung to each other and cried, prayed, worried for her while also mourning for the loss of life we had just learned about in young Emma's departure from earth - a beautiful and darling child from New York who lives vividly in our hearts and memories. No matter how long or difficult the year there are some things that cannot ever be erased from memory and July 24th 2003 will forever be etched deeply in our minds. Praise be to God that Christi's surgery was a full and compete resection, that no other organs were touched by the knife and that by the grace of God it has not yet returned!! We hope to have radiation done to that primary site since NB commonly reoccurs in the primary site, but radiation treatments are not a priority in the current realm of things; we need to get her NED first. Glory be to God on most high!! July 24, 2003: We know why people literally fly their children from around the world to be blessed with the work of this world renowned pediatric surgeon who lives "neuroblastoma" 24/7. Thanks, Dr. LaQualia! You are a Saint in our books!

Perfecting her biking technique was the highlight of Christi's week last week and this. From the porch where I was studying, I once watched her fall six times in a row way down by a neighbor's house, but every time she'd get right back up and try it again. (I have to admit I think I would have just left my bike and stomped home. hee hee.) When she returned she told me she fell a bit, but now she could start and stop perfectly. I asked, "Are you bleeding?" She responded, "Just a little bit." (Cancer has really toughened this kid up!!!!!) And we've been calling her "Christi Armstrong" this week! (Go, Lance!)

Christi has been wanting to ride on a bike trail now that she's really mastered riding a 2 wheel bike. Trail riding is something Shayne and I have enjoyed partaking in B.C. (before Christi, hee hee, so naturally once the children came they started riding in the bike trailer behind Shayne's bike. (They were both so little in fact their first bike rides found them strapped in the trailer in their little infant car seats! Shayne and I once had a goal to ride every bike trail in Ohio, but we never made it!) Anyway, this past Sunday afternoon, we drove to Fremont to ride the Fremont - Clyde trail. What a blessing! Shayne pulled Shayla in the buggy as she happily read her books and enjoyed the live butterfly that Christi somehow caught for her and it stayed inside the "netted in" trailer - simply amazing! (We called it a butter fly house in a book mobile- hee hee) Christi followed and I "brought up the rear". This was my view - definitely one of the most lovely settings I've ever viewed: One girl, literally given a death sentence, riding a bike without any complaint of pain, long light brown curls flowing out of the bottom of the bike helmet - a helmet that wouldn't have fit just one year ago because of her bald head, giggles and laughter filling the air coming from the girl who many times I've heard whimpering, crying and screaming during the anguishing pain of cancer treatments. I also often heard screech of the brakes due to the "flower sightings". (Christi would slam on her breaks whenever she went past "pretty flowers" which she would pick and put inside Shayla's trailer since she was too little to ride along.) Somehow I never crashed into her once, but every time Shayne and I would look at each other and fight away laughter because it was really close. She's just hit those brakes as soon as I started to relax and I'm nearly smash into her. What a hoot! She had no clue! I guess she's learned through this journey that you have to just "Stop and smell the flowers". Oh, it was a PERFECT day! Thank you, Lord!!!

Sunday night found Shayne and Christi heading out for a hike. Christi, always one to really get into the moment, put on a safari hat and packed a backpack filled with things she may need (on a month's trip through the rain forest perhaps!!). Off they went into the woods. It got darker and darker and darker. I knew she had a flashlight, yet I was still worried. When they arrived at home, Shayne told me they were having so much fun that they just kept walking. The next morning before Bible School I told her that I was really getting worried about her. She said, "Actually, we were getting really worried about us too! We were really lost!!" Oh, it cracked me up! Shayne still claims they weren't really lost.

Tuesday's visit to Dr. Vela, a required weekly visit for this ABT experimental study to check for neuropathy, reaffirmed that she's doing fine on the chemo. Her blood counts were down, but decent: 9.9 hgb, platelets 84. They reported a white count of 5, but I know that the white count there is never accurate and the ANC just isn't able to be calculated there. I've made her appointment at the hospital for Monday. Her weight was Weight: 26.8 kilos (about 60 pounds) Height: 128 cm. (about 50 inches) No, not yet tall enough for the Witches Wheel or the Raptor at Cedar Point, but she's hoping for that next year. (I'm just hoping for a next year!)

My personal thanks to my sweetest and dearest friend, Becky, for helping me out with a "special mission" on Friday morning!!

Only through His grace,
Angela and the Thomas Team

Christi's Joke: She's been telling them, but her Mom just doesn't have the remarkable ability to memorize like she does! I can't remember any and right now she's out riding the obstacle course Daddy set up for her in the driveway on her bike.

Christ's Funny: We were sitting around the campfire ring out in the back yard and there was a large log/stump. I said, "Christi, what's that? She said, "Daddy pulled it up from the creek. We were going to roast it, but it wouldn't fit in the fire ring." Well, I'm glad she just roasted marshmallows instead! hee hee

What's Next?

The oral chemo and weekly blood and doctor's visits will continue daily until August 6th. Our "prayer therapy" will also continue daily and we thank you for contributing to this too. We know why she's gotten this far despite it all.

Saturday, July 31st will be the "Second Annual Friends of Christi Thomas Poker Run" with all proceeds going to "Just for Kids". It is designed for motorcycle riders; however, you can come just for the dinner and the band if you'd like. (hog roast supper to be served 4:30 -7:30 PM $6.50) For more information contact: Keith at 419-447-9911 or call Smitty's Tavern at 419-455-0889. If riding, the event will begin at Smitty's Tavern at 10:30 AM for registration with the motorcycles leaving at noon for five stops. We've just learned that they've located a side cart and a little motorcycle helmet and they want Christi to lead the motorcycle parade through Tiffin before they head out on the Poker Run. (How sweet! I think she'll just LOVE riding in a side car through town!!!) We shall then return later to help serve the dinners. All proceeds are going to "Just for Kids". Just for Kids, founded in memory of two little ones who were victims to cancer, helps families with life threatening medical issues in Seneca County. Just for Kids has a new web site: www.senecacounty/justforkids Check it out!!

On Saturday, August 7th Christi will be helping with the American Red Cross blood drive to be held at Hospice on Perry Street, in Tiffin. She will also have her "Christi's Flower" cards for CureSearch (Formerly the National Childhood Cancer Foundation) available for $10.00 per box and will be manning her lemonade stand for Alex's Lemonade Fund - raising $ for pediatric cancer research one cup at a time. To schedule an appointment call Hospice at 419-447-4040 or 1-800-834-8100. We should have most all of our test results from CHOP since we will have arrived home late, late Friday night.

Saturday, August 14th is the Attica Fair Cheerleading Competition. This is a cheer competition that I founded 9 years ago and something that has turned into a very large event. After taking last year off, due to living in NYC, I am again directing the event. www.AtticaFair.com/cheerleader This is where Christi will be performing (not competing) an individual cheerleader routine this year thanks to her incredible music teacher Lynn H. sewing her a cheerleader outfit and to her awesome second grade teacher Kristin R. (and Heidelberg's cheer coach) making up her routine. (She's hopeful that her teacher will allow her to dance to a section from "Christi Thomas, Here's a Promise!" She thinks she'd be the only cheerleader to dance to a song written just for them and in reality I'm certain she's right!!! Thanks, Lee Kweller and Songs of Love for writing that song for Christi over a year ago. It's still on the top of our charts!!!) I don't know if she'll really have enough guts to go out there in front of hundreds and hundreds of people and do some cheers and a dance all by herself, but who knows! She may! Regardless, I'll be very proud of her!!

And I'll take lots of pictures as Daddy will be at the University of Wisconsin at Madison preparing to graduate from Banking School!!!! YES!!!! A year late - but he worked his bum bum off this year with all of the requirements and he will finish up his course work and graduate. I'm soooooooooooooo proud of him! I wish he could have graduated with his tremendous class last year, but at least he's finished all he had worked so very hard on before Chrsiti was diagnosed with cancer. (This is where he had met "Webby" Eric years ago as they were in the same class.) I had wanted for the girls and I to fly out for his graduation on the 21st of August, but it's too expensive. I'll send a disposable camera instead! Congratulations, Daddy!!! We love you and are so proud of you!!!!

THANKS, EVERYONE!!!!!! Sorry this ended up being so long! Have a great weekend!!

Children's Neuroblastoma Conference 2004

July 22 - 25, 2004

Hyatt Regency on the River walk
151 E. Wacker Drive
Chicago, IL 60601

Bloomingdale, IL June 28, 2004 The Children's Neuroblastoma Cancer Foundation (CNCF) is sponsoring its third annual Children's Neuroblastoma Conference in Chicago July 22 through 25, 2004. Funded by a grant from the Kemper Educational and Charitable Fund, Children's Neuroblastoma Conference 2004 will offer families touched by neuroblastoma a unique opportunity to learn more about recent neuroblastoma research and developing treatment protocols.

"The leading pediatric oncology researchers in North America will discuss the latest developments in neuroblastoma research and share with us their visions of what the future might hold," said Patricia Tallungan, President of CNCF. "Parents will also hear expert presentations on the status of new drugs in development; low and intermediate risk treatment protocols; immunology and its application for treatment; T-cell and vaccine therapy and other approaches for treatment of high risk children; as well as the emotional and psychological stress of parenting a child with cancer and its latent effects on long term survivors."

Children's Neuroblastoma Conference 2004 / Speakers Agenda

Friday: July 23, 2004
The History of Neuroblastoma Research & What the Future May Hold
Dr. Audrey Evans
Children's Hospital of Philadelphia

Current Treatment Options for Relapse/Recurrent Neuroblastoma
Dr. C. Patrick Reynolds
University of Southern California, Keck School of Medicine
Children's Hospital of Los Angeles

The FDA New Drug Approval Process
Dr. Steven Hirschfeld
U.S. Food and Drug Administration

Immunology: What It Is and How We Might Apply It
Dr. Robert Seeger
Children's Hospital of Los Angeles

T-Cell Therapy and Neuroblastoma
Dr. Michael Jensen
City of Hope National Medical Center

Vaccine Therapy and Neuroblastoma; and
Latest Research on Bone Metastases
Dr. Heidi Russell
Texas Children's Hospital

OMS and Neuroblastoma
Dr. Michael Pranzatelli
Southern Illinois University, School of Medicine

Saturday: July 24, 2004
Low and Intermediate Risk Treatment Alternatives
Dr. Doug Strother
Alberta Children's Hospital
Canada

Long Term Survivor Studies
Dr. Charles Sklar
Memorial Sloan-Kettering Cancer Center

Life With and After Neuroblastoma
Richard Noose
Neuroblastoma Survivor

Emotional Effects on Families of Children with Neuroblastoma
Melissa Alderfer, PhD
Children's Hospital of Philadelphia
Palliative & Hospice Care
Dr. Clarke Anderson
Children's Hospital of Los Angeles

The Grieving Process
Dr. Brian Delaney and Dr. Aurora Sanfeliz
Dana Farber Cancer Institute

Children's Neuroblastoma Conference 2004 opens with registration of parent participants and hotel check-in on Thursday, July 22 at 3:00 p.m. Checkout time for Conference attendees is 12:00 noon Sunday, July 25.

Parents wishing to attend can call 866.671.2623 toll-free for more information or may register on-line at:
www.cncf-childcancer.org/conference2004Form.aspx.

About CNCF The Children's Neuroblastoma Cancer Foundation (CNCF) is a national voluntary health organization whose mission is to help find a cure for children's neuroblastoma and to improve the lives of children suffering from the disease. Children's neuroblastoma is a virulent and little understood solid-tumor cancer with a five-year survival rate of less than 30%. The CNCF supports pediatric oncology research for the treatment and cure of children's neuroblastoma and assists patients and their families through service, public education and advocacy.

Founded in 2000, the Foundation is headquartered in Bloomingdale, Illinois, outside Chicago, with member volunteers throughout North America. CNCF is a 501 (c)(3) public charity, ID #36-4370725. For more information about the Children's Neuroblastoma Cancer Foundation, please visit www.cncf-childcancer.org.

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