Tuesday, October 12, 2004
"Many, O Lord my God, are the wonders you have done... the things you planned for us... too many to declare."
It is with great excitement that I share some wonderful news with the Christi Crew!! The Children's Hospital of Philadelphia's Division of Oncology has honored Christi by featuring her as the February Artist in their 2005 "Courageous Kids Calendar". The artwork which was selected is her multicolored heart "using only four colors" which was made in a big rush on the floor of the Ronald McDonald House in Philadelphia just hours before the contest deadline . (Nothing like waiting until the last minute, Christi! She had been talking about entering the contest for months, but never was inspired - until the deadline loomed overhead) Regardless, we're THRILLED that Christi is in their calendar and we hope that they sell a bunch! (Well, really we wish there wasn't even a need for a calendar like this to raise money for cancer research, but...) The calendars are $15.00 (which includes shipping and handling) and $10.00 goes to Oncology Research at CHOP. Each of the 12 featured artists (all patients at CHOP) has their own month. Each child was also questioned to find out about their hobbies and interests and an artist created a caricature of the child. Christi is riding a roller coaster with a ballerina symbol on the car for her caricature - very appropriate since Christi LOVES roller coasters and taking dance lessons. She's also on the cover with her piano keyboard. Please consider purchasing a calendar to help find a cure for childhood cancer. Children and their parents will forever give their thanks!
Last Wednesday's blood counts were down much more than we had anticipated. (3.0 white, 10.0 Hgb., 114 platelets with an ANC of 1200) Tomorrow she has an appointment with Toledo Mercy Children's Oncologist Dr. Jasty in addition to having blood drawn from her arm. Our prayers have been for higher blood counts tomorrow.
With great joy and feelings of tremendous blessings on Thursday, I sent both girls off with three of their Grandparents for the school grandparent program. I fully realize that many children do not have grandparents who live close by or who can or will take the time to spend with them so I was wiping away tears as Paw Paw Joe backed the car out of our driveway headed for school and I headed in to pack our family up for the weekend.
Friday night Shayne and I attended a lovely event at Heidelberg College - to honor the new college President, Dr. F. Dominic Dottavio while Shayne's wonderful Mother (Grandma Nee Nee) watched the girls. I was caught off guard that Dr. Dottavio knew all about Christi and the lemonade stand that was recently held on campus. How heartwarming to hear about little Christi from the college President. (No, there wasn't a college scholarship offered though, hee he heee!) We returned home to watch some of the Presidential Debate and then loaded up the girls to drive five hours south to Louisville, Kentucky.
Arriving about 2:30 AM, I checked into the hotel (using some hotel frequent stay points awarded to us - thank you!) and immediately asked for a late check out. The sweet desk clerk joked that we probably didn't need a wake up call either. (hee hee!) The girls watched the Saturday morning cartoons while Shayne and I read and enjoyed the leisurely pace of the morning. Next, we headed out to walk around the downtown area where the girls were fascinated with finding and sketching the Kentucky Derby horse statues that were all over the downtown area. We visited the science museum and then finally it was time to go to the Palace Theatre to see CATS! I don't know if I enjoyed the awesome musical or watching the girls' faces more! It was sheer delight! Shayla was literally on the edge of her seat and nearly had to be pulled back into her seat because she was ready to start dancing in the aisle. What joy! She later told someone, "I didn't even blink because I didn't want to miss anything."
As Christi crawled up into my lap during the show, tears poured down my face. You see the weekend after she was diagnosed with cancer we had tickets to see CATS in Cleveland because she just LOVED the music and the PBS video. We had been looking forward to it all during the summer of 2002. Suddenly, she was in a hospital, starting the fight for her life, and we were obviously unable and no longer had any desire to go see Cats. Thankfully, a friend was able to get into our home to get the tickets and to use them for her children (and even paid us for them which was totally uncalled for, but if you know Becky and Gary - you'd understand) we just didn't want the tickets to go to waste. So never did I think that Christi would really be able to see CATS. Thank you, dear Lord!! "Your love, O Lord, reaches to the heavens, your faithfulness to the skies." (Psalms 36:5)
So Saturday night after driving in from Louisville, we arrived in southern Kentucky where we stayed with Shayne's sweet Father until early Monday morning. While the time was short, the love was overflowing! Our deepest thanks to Grandpa of course, but also to "the cousins", Scott & Cindy, the incredibly "Ks" and everyone for all of their extra efforts which made our family feel so special, loved and welcome "down south".
Upon our return from spelunking on Sunday afternoon, where we all thoroughly enjoyed caving in the lovely Onyx Cave and where Lowell did not really get stuck like Shayne jazzed up the story for the others while sitting around the campfire, they had arranged for about 12 kids to come over and play. (Now you must know that Shayne's dad lives down the tiniest country road you can possibly imagine and where there are no houses to be seen.) It was unbelievable to see so many cars parked all over his yard and people everywhere gathering for good food and friendship!! The children went for hikes, played kickball, blew up balloons, picked flowers, blew bubbles, rode horses and had a glorious time! Sadly, Monday morning arrived and it was time to head north. Christi again (just like every time she's been to Kentucky) was car sick many times. Maybe it wasn't related to the 18 days of chemo she had been on, but I'm certain it didn't help. Upon our eight hour journey home, I continued to reflect on the fact that we had not been down to see Shayne's father since June of 2002 due to Christi's cancer and never did I really think she'd ever get to return there again. God is good!
While there wasn't much notice in publicizing the event, Volvo had a great event for Alex's Lemonade Fund over the weekend. "Webby" and Alicia went to their Volvo dealership and Eric wrote about it if you're interested in reading about it. Thanks, Volvo!
In a matter of days, Shayne will drive Christi out to Philadelphia. Her schedule is set up for next week. Wednesday, they'll make the 8-9 hour trip out to the east coast and will get a hotel room. (They won't make the Ronald McDonald House check in time since Christi wants to go to school the whole day on Wednesday.) Thursday morning she'll be NPO and will be sedated for her bone marrow biopsies and aspirations. (She's already given me instructions to tell Dad the restaurant where he needs to run to because she likes to wake up and eat this soup in a bread bowl after her born marrow tests. Yes, we all have traditions, don't we?! Hee hee!) She'll also have her blood tests, EKG and ECHO, and VMA/VHA tests conducted. She'll also receive the isotope injection on Thursday. On Friday morning, will be her MIBG scan and the ever important tell all meeting, along with the horribly tense time waiting for the afternoon meeting, with Dr. Maris where all of the tests results will be shared and the treatment plan suggestion made. Due to the fact that I do not have any sick days remaining (Thankfully, I never needed to use anyone's sick days but my own; however, I cannot make this trip.) just Shayne will be in Philly with Christi which is always incredibly stressful. You can be assured that I will be walking around with my hand on the cell phone waiting for it to be the call from Shayne. Our prayer request is that Christi's dangerously low cellular level has risen due to the lowered dose of chemo and that her disease has diminished or been eliminated. (I know. I know - far out, unlikely prayer requests, but God is almighty and can move mountains, so we're praying for nothing less!) The tension and stress around our home is building with each passing day.
It is with tremendous sadness, that we learned about Amazing Austin - a 25 year old neuroblastoma fighter from Seattle earned his Angel wings on Monday with his beautiful bride of only a few months at his bedside. I've followed Austin's journey for a very long time and have emailed with his beautiful finance, bride and now widow. My heart breaks for Helen and for their families. This beast is so cruel and appears to spare no one. Austin was diagnosed at age 18 and fought a great fight - touching many lives along the way. May God bless his loved ones with strength and comfort to deal with their horrendous loss of young life. http://www3.caringbridge.org/wa/austinguy
Thank you for checking in! Unless there are problems (like if she catches a cold and they cannot sedate her for the bone marrows or something) I shall not update until we have the test results from Dr. Maris at CHOP. I'll post the results as soon as I can.
Jessica P. if you happen to read this, please call me and leave me with your number or email me your new address. I've tried the number Shayne wrote down for me and I'm receiving a message that says it's unavailable. I hope you're doing okay. Please let me know.
Wishing you peace,
What's Next: Tomorrow is her last day of chemo (Round #6 ABT - 751) Blood counts and Dr. Jasty tomorrow, Friday night the sleepover of the year I think. (It's Theresa's birthday and she's been looking forward to spending the special night with Kaylyn and Theresa for weeks!!) Next week, the ever important and very stressful test/scans time back at CHOP.
Jokes? Not really into jokes at this point, but prayers and more prayers.
PRAYER REQUEST: That Christi's cellurality level is much improved and that there is no need for her stem cells to be given back to her (again - like in January of 2004). We pray that God has used the ABT chemo to eliminate or reduce the cancerous cells from Christi's bone marrow and that there are no new site s or any progression of the disease. Lord, please hear our prayers.
The lovely article was kindly printed (front page, full color) in the Fostoria Review Times last week:
By EMILY HOIS
Love life through the eyes of a spirited seven-year-old.
It's easy to see her vitality illuminate the play area of Putt'N'Pond as the youngster dives through plastic balls and scampers through tunnels.
The hard part is believing this radiant child has less than a 1 percent chance of survival.
Two years ago, Christi awoke screaming because she couldn't breathe. Frantic, her mother Angela rushed through stop lights to the hospital.
Ten days and many tests later, Christi was diagnosed with neuroblastoma, a cancer of the nervous system that strikes roughly 600 children in the U.S. each year.
With a tumor the size of a baseball gripping her heart and spine, the cancer had already progressed to stage four.
Christi underwent rounds of chemotherapy starting at the Children's Hospital of Columbus in September of 2002, then moved to New York City's Memorial Sloan Kettering Cancer Center in January.
While Angela struggled to hold back tears, her daughter was laughing as she pulled golden locks from her delicate head.
"Christi's just naturally in a good mood," her mother revealed. "She doesn't view herself as sick."
The Thomas family moved into room 1006 of the Ronald McDonald House, where they lived for eight months with families from all over the world. Angela's husband Shayne and their 4-year-old daughter Shayla slept on the floor so Christi could sleep on one of two twin beds with her mother providing a comforting maternal touch throughout the night.
"I look back now and I can't believe we did it," Angela said. "But when you're out to save your daughter's life you'll do almost anything--I'd do it again."
To maintain their sanity, Shayne and his wife focused on staying healthy.
"A lot of it is eating right, taking care of yourself," he said. "Stress induces you to pick up bad habits."
Angela said Christi liked her stroller better than her wheelchair. "We walked a ton--just miles and miles."
After completing three high-dose rounds of chemotherapy, the tumor had shrunk, but cancer still prevailed in Christi's bone marrow.
She began a painful injection of antibodies and beta glucan in the hopes of destroying the cancerous cells. "It's a terribly painful process for the kids," Angela said, and is accompanied by a drug stronger than morphine.
"I'm grumpy from taking antibodies," Christi said, but described with a smile the beta glucan pills as, "vitamin gummy bears," because she would chase the medicine with candy.
"In the evenings she was back to happy old Christi again and playing in the Ronald McDonald House," Angela said.
After that treatment, the Thomases traveled to Tokyo last summer courtesy of Make-A-Wish-Foundation. Three of the five former Japanese exchange teachers who were previously hosted by the Thomases acted as the family's tour guides for their eight-day trip.
The day of their departure, Shayne checked his e-mail and discovered Christi's surgery to remove the tumor was scheduled on their return date, July 25.
"We were petrified about the surgery," Angela said, then added, "We knew we had the world's best pediatric surgeon."
After the operation, with tubes and wires everywhere, the persistent 7-year-old walked to the playroom to retrieve a complimentary game. She chose Clue Jr.
Though the tumor was removed completely, neuroblastoma remained in her bone marrow. "There's no known cure for the beast that's taken over our beauty," Angela said.
"Either they respond completely, initially--or they don't," her husband added.
The Thomas family traveled to the Children's Hospital of Philadelphia as Shayne prayed for a sign that it was the right decision. Narrowly escaping the August blackout in New York City by several hours, the family drove south reassured.
Christi was injected with a radioactive isotope and kept in isolation for several days in a room with every object covered in plastic.
"Radiation is when you can't bring in your favorite toys," Christi explained.
"She's truly a pioneer trying all these trials," her mother said with an admirable grin. "You know the reality if you don't try. Even if it doesn't help Christi, hopefully it'll help another child."
In Philadelphia, Christi met 8-year-old Alexandra Scott, a fellow neuroblastoma patient who wrote a book, "Alex and the Amazing Lemonade Stand."
Inspired, Christi decided to be the spokesperson in Ohio "to help her and everyone feel better."
Her first stand was on "Lemonade Lane," outside Old Fort Bank in Tiffin, of which Shayne is vice-president.
"It was 50 degrees and pouring," he said, but the turnout was incredible. "Most of them didn't even drink lemonade. They just came out to meet Christi." Her lemonade stand raised nearly $4,000 for pediatric cancer research.
"People are good," Angela said. "That's my motto -- God's people are good."
Although Alex's goal was $1 million, she attained an impressive $900,000 before she died on Aug. 1. "She's definitely a legend," Angela revealed. But so is Christi.
In addition to serving lemonade, the youngster has sponsored numerous Red Cross blood drives dressed in a lab coat with a stethoscope around her dainty neck. "She will even tell the nurse how to give a poke in the arm so it doesn't hurt the patient," her mother said. "She's a brave little girl because she's had to be."
Christi has received the Clara Barton award for her role in the drives. She was involved in a duck race event for Hospice at the Heritage Festival and read Alex's story to an education class at Heidelberg College -- with the lemonade stand opened for business at both.
"The kid's been ritually blessed, but she's given more than she's got," Shayne said proudly.
Like her benevolence, Christi's battle continues.
"Certainly she's not a success story, but she's underwent so many different treatments," Angela said, hoping that her experiences have the power to guide other families in similar situations.
Currently, Christi is taking ABT-751 which allows her to resume the activities of a normal 7-year-old while keeping her condition stable.
"It doesn't hurt and doesn't make me sick or anything," Christi said.
On this day at Putt'N'Pond, the parents smile at their treasured daughter running gleefully from game to game, accumulating green tickets.
"We're thrilled her quality of life is so high," Angela said.
"If it's short, we want to make it good," Shayne added.
"I really believe if we can just buy enough time, efforts like Alex's lemonade stand will help find a cure," his wife stressed with sincerity.
"We've put a man on the moon, we've got to be able to beat this."
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Shayne & Angela Thomas: firstname.lastname@example.org