Journal Entry


Saturday morning, January 1, 2004

"Cancer aside - 2005!"
by Amy A.

Well, we tried "Cancer free - 2003" and "Cancer no more - 2004" without any luck so when a sweet Prayer Warrior and blood donor from Chicago emailed the following suggestion, I immediately thought, "That's it!" Regardless, cancer aside, it just isn't stopping this amazing little gal (yet) and what absolutely amazing times we've recently been blessed with in spite of living in the midst of cancer and its tiresome treatments...

Following our final day of school - Friday, December 17th, we headed to Columbus for an early flight (complete with a 3:45 AM wake up call) out on Saturday. (The flights I booked were most inexpensive that way and the hotel permitted us to leave our vehicle parked there for free.) The girls were delighted beyond belief to learn that they had received "Build a Bear" gift certificates from the awesome teaching staff at Krout Elementary in Tiffin. (Actually, they sent them to my Mom in Feb. of 2003 when we were in NYC when we left Shayla behind with friends and family to care for as we took off with just Christi in late December of 2002. The incredible staff at Krout wanted Shayla to make a bear for her and one to send for Christi, but every time my Mom would offer to take Shayla to Columbus to do that to me over the telephone, I'd tell her not to because I was certain that Christi would absolutely love to build a bear herself and it was my hope to get her well enough to come back home one day and the girls would do it together. Well - nearly two years later, that was a dream come true. THANK YOU, KROUT!!!! I'm certain they never would have believed the delightful shouts of joy and happiness coming from the girls as they literally skipped around the store oohing and ahhing at all of the wonderful treasures inside. With me that evening, I held the card my Mom had given me and read over the long list of handwritten signatures - mostly teachers I know and some that I do not; I couldn't believe their kindness, generosity and thoughtfulness shared with us all. Dreams do come true!) Since we have now returned home Christi and Shayla have been dressed and re-dressing their "Build - a - Bear" animals with different outfits, very cute, very creative - what fun! Thank you, all!

Because of our extended vacation time this year, inexpensive flights, friend-of-a-friend's help with accommodations, and complimentary tickets to many theme parks in Orlando due to a unbelievably kind Neuroblastoma Stage IV Survivor's Mother (whose family also packed up and moved to NYC for ten months to treat their then 12 month old daughter - successfully I must add) we decided to spend Christmas in Florida this year - after we first consulted with Christi who was THRILLED with the idea of going to Disney World on Jesus' birthday (little did we ever dream that we'd be soaked in the pouring rain, but oh well it was better than shoveling out in the snow and ice here in Ohio). And as the time went on and the snow and ice piled higher and higher and higher back home where some were without power for days, we felt that we couldn't have made a better decision. Yes, being in the Sunshine State where the girls went swimming nearly every day was a tremendous idea.

Christmas is full of surprises, but the real surprise for the girls was to be that Traci (a.k.a. Harriet - that awesome "Explorer" from COSI, an interactive science center, in Columbus) was driving down (and bringing the girls' Christmas gifts in her "sleigh" that I had secretly given to her weeks earlier) to spend a few days with us. Christi and Shayla were swimming in the pool when she arrived and walked up. Traci's Mother said, "They don't even seem surprised. Did they know?" No, they had no clue; however, like Shayne told Katie, one has to remember that Traci has "just appeared" in many other places and strange far away cities to check on Christi so perhaps the girls think that with Traci, like God, anything is possible! Regardless, Traci joining us provided for some additional wonderful memories - like growing Sea Monkeys in the kitchen and shooting balloon rockets down the flight of stairs, not to mention providing Shayne and I the opportunity to slip out one night to Downtown Disney's Pleasure Island which was a very special treat for us going to a Comedy Club and doing some dancing. During Magic Kingdom's electrical light parade one evening, the lady sitting next to Traci and the girls shouted over to me, "Is she your babysitter? She is absolutely amazing with your kids!" I could only laugh back and say, "She's not a babysitter, but a sweet friend and you'd have no idea what this fine young lady has done for that girl," as I pointed to Christi - looking so healthy and happy. No one would ever guess what she's been through, what she's going through and what lies in her future. Together we had the most magical and blessed ten day vacation that one could ever dream of experiencing with their children. We've been blessed beyond belief and forever will our hearts be filled with gratitude and appreciation for the help we've so lovingly received during Christi's journey.

Unfortunately, Traci and Katie got caught in the midst of the "worst snow storm in 20 years" while heading back north, but thankfully they did make it safely - just two days late, which caused Shayne and I a lot of relief as we were quite concerned about their travels as we anxiously watched the weather channel and awaited their daily phone calls. Christi faithfully took her oral chemo each morning of our trip without complaint had little nausea and generally felt really well. This drug is amazing! Thank you, Abbot Labs!

Upon our arrival home, Shayne's Mother so lovingly greeted us with our fireplace burning - literally (Smile. Love ya, Nee Nee! Good attempt! Thanks for the laughs!) and our Christmas dinner ready to be placed upon our table - once the smoke cleared! Shayla said, "Why don't you guys go back to New York so I can live here with Nee Nee?" which cracked us up! When I went to bed that night and paused a moment to watch her and Grandma Nee Nee cuddled up together on the floor sleeping soundly - the way Shayla loves like no other, I knew exactly why she would like for us to once again pack up and head out without her. Sorry, Shayla! Unless something goes terribly wrong, you're stuck here with the old Mom and Dad and will only be really spoiled when we can talk Nee Nee into staying overnight with us - which is never often enough!

There were also lovely surprise gifts that arrived in the mail in celebration of the birth of our Savior and to cheer on the little courageous cancer fighter, Christi. Again - sweet Angels on earth! So kind and thoughtful and generous are God's great people! Christi has been happily playing with her new toys, getting her hair beaded with a hair beader she received (Who would have ever thought the "bald headed little girl" would ever have enough hair to do this?! What joy!) walking around in the three cute little bra and panty sets she was SO EXCITED about receiving now that she's seven and so grown up and all (hee hee) and she is ready to head back to school and to her sweet third grade girlfriends and to start her piano and ballet lessons.

REJOICE!! OUR SAVIOR IS BORN!!

Christi's blood and urine test results from the hospital indicated that her LDH was down a bit to 202 - a week previously it was 222. 100 - 190 is considered in the normal range so without a doubt she still has cancer in her bone marrow; the question remains how much. (The LDH measures tumor activity.) Although not a test we put a lot of stock in as 've never been good indicators for Christi, her urine markers did make the normal range at 5.0 and 6.2 (VMA and HVA respectively / normal HVA (0-15) and normal VMA (0-9) for Christi's age, 7 years old). I put a comparison chart at the bottom of my entry today. Last week her CBC was great at: 11.2 hgb., 3.8 white, 146 platelets with an ANC of 1900 - nearly normal! On Wednesday of this week, it was again drawn in vials out of her arm and the numbers came back pleasantly shocking - ALL NORMAL RANGES! WOW! You go, girl! (Hgb. 12.3, white 7.3, platelets 160, with an ANC of 4,700) The white count was suddenly so high that I emailed Dr. Maris who responded back immediately saying, "They're all normal. Enjoy." So there you have it - normal blood counts for the first time since her first round of chemo began in September of 2002. I'm just not used to that!! PRAISE HIM!

Calls and emails have also been made with Dr. Heidi Russell at Texas Children's in Houston where they'd like to get Christi's cells, which are now all ready, infused into her as part of their Phase I study as soon as possible. That really complicates things and Shayne and I have had many discussions about doing that study or not. Currently, it is of our belief that we won't know if the ABT - 751 is still holding Christi stable or not until mid-January when she returns to CHOP for tests/scans; however, we still feel really good about this amazing drug. (She's currently in her 8th round of ABT which she started in April of 2004. Her quality of life has been tremendous!) If it is working, we think we'd be foolish to remove her from this ABT study, do the vaccine trial - which may or may not help and may give her a secondary cancer as it has with another child, and then maybe not be permitted to get this ABT again since we went off study; yet, we ponder whether they'll let Christi get her genetically reprogrammed DNA infused in her at another time if we turn this down now when they're ready to move and need her in Houston soon. Ugh. We continue to lean on the side of not doing the Baylor trial at this time, yet not a day goes by when I don't pray for guidance and wisdom from our Heavenly Father. Again, we shall decide nothing until the test results are back from her return visit with Dr. Maris and the wonderful folks in Philadelphia in mid-January.

Today is the first day of a brand new year! In reflection I think back upon 2002 when Shayne walked down to Times Square to ring in the New Year figuring it was a once-in-a-lifetime opportunity while Christi and I were in the Ronald House asleep by ten o'clock. In 2003, Shayne and the Security Guard at the Ronald McDonald House in Philadelphia watched the fireworks from the sidewalk in front of the Ronald House while the girls and I tried to stay up until midnight, but were snoozing by eleven o' clock so this year nothing seemed better than staying in our own home to quietly ring in the New Year! It turned out the girls wanted to go to Grandma Donna's in a very bad way so we picked up a pizza and off we went. Shayne met us there after work to visit and sweet Grandma later sent us home for a rare night spent alone while the girls also enjoyed their private "slumber party" - "Girls Night" at Grandma's. What a blessing! Tonight our dear friend Caroline is coming over for dinner. She's a fabulous cook so I'm certain my meal will lack a lot of luster; however, we're looking forward to some great conversation with Caroline regardless of how my meal turns out - and she is bringing one of her awesome pies so if all else fails, we'll just have dessert and talk about education issues.

One short year ago tomorrow a batch of Christi's stem cells were transplanted in her which saved her life since her little body could no longer produce the blood counts needed to live due to the serious side effects she experienced from the double high dose full body internal radiation she received over two weeks at CHOP in the late fall of 2003. (That was the MIBG treatment attempt which unfortunately failed her.) Yet, we are so grateful for the wisdom of her oncologist - Dr. Maris and will always remember that scary day when he gave her stem cells back through a syringe. One short year ago this week our NYC oncologist estimated that Christi had just six months left to live - thank God that prediction was wrong! And finally, one short year ago, this oral chemo (ABT - 751) that she is currently thriving on, wasn't even available for this little pioneer. Thank God for research, for new clinical trials and for great organizations (and little legacies like sweet Alex Scott!) and to wonderful people donating to actually make research happen! May a cure be funded in 2005! Thanks for your continued help!!

While NB IV survivors are relatively rare, those that I do know of have mentioned to me that they feel tremendous guilt knowing that their child has survived this beast, while the vast majority succumbs to it. Well, I must admit that even though Christi is far from a survivor and there is as of today no cure for her cancer - refractory neuroblastoma stage IV, I still feel guilty that she is thriving and doing tremendously well while most of those diagnosed with this beast haven't done so well, nor have experienced such wonderful quality of life as Christi has experienced being on this oral chemo since April of 2004. I don't know of any other neuroblastoma kid, in current treatment, who is doing as well as Christi. It is gut wrenching, draining and so sad to know of ten, yes ten - t-e-n, precious children who have gone home to Jesus just since mid-November all neuroblastoma victims. I wonder how many more children have died of neuroblastoma in these past few weeks that I don't even know about in addition to the ten I do know of. What a sickening disease!!! I pray that 2005 will be the year a cure is discovered for all cancers and for other life-threatening diseases. Lord, hear our prayers.

So "Cancer Aside" we couldn't be more thrilled with this precious gift of life still ticking and ticking STRONG I must say! Thank you, Lord! (I shall update when we have the test / scans results back when the rest of the Thomas team returns back home to Ohio which should be around Martin Luther King, Jr. day.)

Wishing you and yours a most peaceful and joyous New Year filled with good health, hope and happiness!! Thanks for checking in! Not a day goes by without receiving a good wish from someone around the world and the comfort that it provides simply cannot be explained or measured. Thank you for sticking with us! What a journey it's been; yet we couldn't have made it thus far alone. Thank you to the Christi Crew!! And our hearts and prayers go out not only for our little courageous cancer fighting friends, but also our military men and women and their families. We also pray for the families and victims as the horrendous death toll from the Indian Ocean tsunamis and earthquakes has now climbed to at least 138,000 people with others still unaccounted for. How horrible! May God provide comfort and strength while we give our condolences to the victims' friends and families.

Warmly,
the Thomas team Mom - Angela

Christi's Jokes: When is it a bad idea to be looking at a black cat? When you are a mouse. and what can't you eat for breakfast? (lunch and dinner)

Christi's Funny: Said to both Traci and I on two separate "I'm not believing this 'Made in China' stuff anymore. Everything says 'Made in China'. I made this Build - a - Bear and it even says Made in China! It's not true!"

Shayla's Funny: "Apricot! I'm not going to Apricot! I hate Apricots!" said by Shayla when she learned we were going to leave Magic Kingdom and go to EPCOT - which she soon learned is another awesome Disney park.

Mommy's Moment of Reflection: Why is it okay to dress like your doll, but not your little sister? (Hmmmmmmmm. Christi and her interest with the American Girls' dolls and wearing outfits that actually match theirs has been all the rage lately; yet, I am not able to dress her in an outfit that matches Shayla's any longer. What is the difference? I dress Christi first and wait until the last minute to put Shayla's outfit on, but as soon as Christi discovers that she is dressed like Shayla it's all over and she runs off to pick out her out clothing; however, she often asks, "May I wear my outfit that matches Felicity's?" I don't understand!! Felicity isn't even real!! I guess there are some things little sisters may never understand regardless of their age - right Tina? I'm certain you used to LOVE it when Mom dressed us alike!! I KNOW I did!! And now that I'm a Mom I realize how easy it is to locate your children wherever you may be when they are dressed alike; however, I guess those good old days are over.

What's Next? The oral chemo will continue daily through next week. She'll then get a seven day break in treatment even though blood tests will continue to be conducted at the hospital. (I joke that's like participating in another extra curricular activity as it's just as demanding, relentless, expensive and time consuming. Hee hee) Approximately January 12th Shayne and Christi will load up and make the drive all across Pennsylvania to get Christi back to CHOP on the east coast for her tests/scans. If her disease is stable or better, they'll return with her 9th, 10th and 11th rounds of ABT - 751 and she won't need to return until mid-April when hopefully I'll have my first two sick days accumulated at work so that I'll finally be able to go back to Philly with her instead of Daddy. If her disease is worse, we of course will be devastated and we will have many decisions to make once again. Shayne, always trying to slay - or at least stay ahead of this evil disease, has discussed what will most likely be our next "plan of attack" in trying to beat back this nasty beast known as neuroblastoma if she has indeed progressed since October. Hopefully, we won't have to worry about making drastic changes in plans, but we all know the world and the uncertainty of living with cancer much less when you're beloved little gal has been diagnosed with statistically the worse possible childhood cancer to survive -neuroblastoma stage IV.

GIRL SCOUT COOKIES: Christi and Shayla are selling cookies 'd like to order some, please email or call to let us know. They cost $3.00 per box (Yes, Grandma Nee Nee I know you sold them for a quarter back when you were a Girl Scout. Hee hee). They will be delivered to us around the first week of February. I need to place the order when she leaves for Philly on January 12th. This year's cookies include:

thin mints
peanut butter patties
peanut butter sandwiches
camel delights, short bread
reduced fat lemon pastries
animal treasures and
piñatas

Please give a call or send an email if you'd like to place an order. I will be writing one large check to the girls' Brownie Troop, so please, make your checks payable to me - Angela Thomas. Thanks!!

ANNOUNCEMENT: "PULLING FOR RONALD" Christi will be returning to CHOP approximately January 12th via the family van; therefore, she would like to take a large donation of pop tabs to the Ronald McDonald House of Philadelphia as that house receives money from their tab collections and they have always been so good to our family regardless of whether we're able to obtain a room or not. If you have been saving any soda pop tabs and looking for a good cause, or would like to save a few over the next couple of weeks, please send them our way and Christi will happily pour them in the Ronald's collection to get them out of your way while helping to raise money for a great charitable organization - the Philadelphia Ronald McDonald House, the first in the world! (I know many of my students, or their parents, read Christi's website from the emails they send me or the things my awesome students tell me before class, so I shall place a box in the back of my classroom for any of our great students who may wish to drop off a few tabs for the cause.)

RECENT PARTIAL MED HISTORY: LDH Levels - measure tumor activity / just one test which helps to put to the puzzle of assessing how much cancer is in Christi's body

  • April 2004 - 587 (420 - 750 normal range at CHOP)
  • August 2004 - 684 (420 - 750 normal range at CHOP)
  • November 2004 - 749 (420 - 750 normal range at CHOP)
  • December 8, 2004 - 222 (100 - 190 considered normal range at Mercy of Tiffin)
  • December 15, 2004 - 204 (100 - 190 considered normal range at Mercy of Tiffin)

RECENT HISTORY: Urine Markers - not a good indicator for Christi as they were barely elevated at diagnosis when her bone marrow was 99% full of neuroblastoma; yet, it's a test that done routinely to measure neuroblastoma so it's still conducted with Christi.

testing for catecholamines (VMA and HVA):

DATE

VMA (0-9)

HVA (0-15 normal)

October 03

8.7

7.9 (prior to MIBG therapy)

December 03

7.7

6.5 (after MIBG)

April 04

6.4

7.8 (disease progression while on Accutane)

May 04

6.9

6.2 (after 1 round of ABT)

August 04

5.9

6.2 (on ABT)

November 04

6.1

8.5 (on ABT)

December 04

5.0

6.2 (on 8th round of ABT)

Shayla's letter to Santa:

Dear Santa,

My name is Shayla Thomas. I have been very good this year. I would like to ask you for a few things this year and save the rest for next year. I would really like an American Girl outfit with a doll, Junie B. Jones books would be great to read. Also I would like a machine to put beads in my hair. I just want to be like my sister so I want purple cheetah spotted p.j.'s too. One thing I really want is tickets to eh Spongebob Movie. For summer I want Finding Nemo sandals that fit me. Thank you for taking your time to read my letter.

Love, Shayla Thomas / Kindergarten

Written by 7th grade English student in Mrs. Thomas' class - Laura Goshe

Finally, a friend had told me the following article appeared in the Advertiser Tribune newspaper while we were on vacation.

Birthday brings special reward for persistent Seneca East teacher

Angela Thomas of Tiffin earned her profession's top honor by achieving National Board Certification in 2004, according to the National Board for Professional Teaching Standards.

Her name may sound familiar to some readers. That's because there is more to this story.

Thomas has finally accomplished a task she set for herself two years ago. She mailed her application for National Board Certification the day before her driving her daughter Christi to the emergency room.

"Soon she was diagnosed with cancer and I never was able to return to the classroom that year. After years of trying to persuade others to try this process, I told myself during Christi's first year of this battle that if I ever got back in my classroom again, I would apply and try for National Board Certification," Angela said via e-mail.

She said the application fee was $2,300 but she was able to get a refund for most of that amount. Last year, when Christi's condition improved, Angela went back to the classroom and began the quest for National Board Certification. She found herself working many late nights. Sometimes she took a break and put away her materials for a few days.

"I submitted all of my videos, materials and writings last spring and completed the assessment center exercises at the testing center in early summer. With the failure rate being 60 percent, only a few people knew about my efforts," said Angela.

On her birthday, Angela learned that she had achieved her goal. She expressed appreciation for all who supported her efforts.

Thomas has been a teacher and a coach for Seneca East since 1989. She holds a bachelors' degree in education from Bowling Green State University and a masters' degree in education from Heidelberg College. She is a student at the Ohio State University, where she is pursuing a doctorate in teaching and learning while majoring in middle childhood education with cognate areas of reading and language arts.

"With teacher quality serving as the benchmark in determining a student's academic success, the National Board congratulates all teachers who went through the rigorous National Board Certification process," said former Georgia Gov. Roy E. Barnes, chairwoman of the national organization's Board of Directors.

"Angela's achievement is especially significant when you consider the powerful research released this year confirming that teachers who earn this distinction represent the gold standard in teaching and are among the most effective teachers in our nation's classrooms today."

CHRISTI'S NEUROBLASTOMA HISTORY: Dx. NB IV, on 9/11/02 (age 5) treated at Children's Columbus per #3891: surgical biopsy, high dose chemo for four cycles - bone marrow didn't clear

  • Transferred care to MSKCC in NYC (December '02 to August '03) for: 3 rounds chemo (no response), 4 rounds 3F8 monoclonal antibodies/beta glucan (tumor progression), surgery to remove the tumor from along her heart and spine by Dr. L.
  • Transferred care to CHOP (Philadelphia) - August 2004: 4 rounds low dose Irinotecan, two high dose MIBGs treatments (internal radiation) with stem cell rescue, 3 rounds 13 cis-rethonic acid (disease progression, April 2004) and currently on her 8th round of ABT-751 - new oral experimental chemo. Now age seven and a half.
  • Some would consider her a guinea pig for participating in so many experimental trials, yet we like to think of her as a pioneer - hopefully leading and paving the way to a cure for this horrible beast we know and live 24/7 called "cancer".

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