Journal Entry


Monday, April 18, 2005

"Amen"

(The final words of Pope John Paul II, April 2, 2005 )

This morning finds me sitting down composing journal entry #142.  An amazing fact in my mind and if there is anyone in “Cyberland” that actually read all 142 journal entries, I owe you a big prize!  (smile)  Seriously, I know I owe Webmaster Eric a ton of thanks for all of his time, hard work and labor in posting not only all of the 142 journal entries, but also the thousands of pictures and countless other “goodies” he has shared with those helping Christi in her fight over the past 2 ½ years.  (Did you notice he even has a little video clip of her playing the grand piano at Heidelberg College on the home page?  What a lovely surprise!!  He’s amazing!)  Anyway, thank you - all!  God willing, one day we’ll post that she is in remission and the site will be shut down.  However, it appears that I once again cannot post that news even though I dearly long to do so!  This wicked, relentless monster is a beast that just won’t back down!  However, given the recent deaths of three of our very good cancer fighting friends from Ohio and one from Chicago in just 11 days, we are very grateful to still be in this fight while at the same time feeling very guilty that Christi continues to thrive while others can no longer physically hold their precious and beloved children here on earth.

I’ll cut right to the chase and begin with the Philadelphia report.……….Christi’s trip back to CHOP began with Shayne driving the ten hour jaunt without any problems.  Christi was THRILLED to be back at the Ronald House.  The first cool thing for her is always a toy from the welcome wagon at the check in desk.   After she deposited all of the soda pop tabs folks had sent with her (thank you) she took off to see what was new in the house.  Once she made her rounds she was ready for a marathon Pokemon (Nintendo 64) battle with dad. Later, with great joy, she played the piano in the living room.  The incredible Grant family (the sweet family who always seems to spoil us when we arrive in Philly) left an absolutely wonderful (and so timely) gift at the Ronald House………a letter from the Vatican dated March 9, 2005 indicating that their sweet little girls’ letter was received by Pope John Paul II and that he will pray for Christi in the healing love of our Lord Jesus Christi.  Talk about moving one to tears – whoa!  That did it for me!  (I’ll ask Eric if he can soon put the letter from the Vatican on the site too.  It’s to be treasured!!)

Since CHOP was able to handle her in such an efficient manner she was able to get the maximum time to enjoy not only the RMH but also UPenn and CHOP.  As always, Christi enjoyed her time being on the campus of the Ivy League’s University of Pennsylvania .  (She still says that Heidelberg will be her first college, but the U of Penn will probably be her second college and I wouldn’t be surprised. (Wouldn’t she make a great Volunteer at the Ronald McDonald House just down the street?!)   One of the volunteers told her that Penn had one of the best veterinary schools in the country; well, that just about sealed the deal.  She loves the incredible Barnes and Nobel bookstore on campus and spent considerable time there.  Instead of spending her allotted money, she would find a book she liked and just read it on the spot instead of spending her cash.  It is amazing how she continues to devour books.  Just down the street from there she discovered a new restaurant that was right up her alley – “Cereality”!  This is a place where you pick a couple of kinds of breakfast cereal which they scoop and mix together for you and you even get to put a topping on so she had Captain Berry Crunch and Captain Crunch topped with chocolate malt balls.  She liked it so well she ate there twice in one day! (Keep in mind that Christi’s very nutrition conscious.  Daddy doesn’t permit her to eat “sugar” cereal so this was a real treat for Christi!  And of course later when she told me, “My poop was green,” I could only remind her of “Cereality”.  (Hee hee.)

All went extremely well getting through her tests/procedures and happy were they to get to hang out with the wonderful Romano family – friends of ours from MSKCC!  Christi and Mighty Michael played in a playroom together.  Finally, they were called in to meet with Dr. Maris.  He reported that the MIBG was normal, however, there was an “artifact” showing up on her right scapula.  The presentation of the spot was not consistent with disease so it is of unknown clinical significance at this time.  Her bone marrows once again showed positive for cancer (5% one side and 5-10% on the other) and pleased we were that they were noted as being the same as they were in October of 2004 – her last test date, six months prior.  This is still a substantial amount of disease living symbiotically with her.  Let’s hope and pray that the disease does not find a way to become resistant to ABT 751.  That is our biggest fear at this time.

Friday night I spoke with some friends and family on the phone.  A couple asked me if I was happy she was going to have to receive more chemo and I responded back, “Of course!  I would love for her to be in remission; however, on Sunday we are going to the funeral visitations of two brave cancer fighters from Columbus so I’m definitely happy about getting more chemo!  I know the other option and it moves me to tears.”

APRIL HIGHLIGHTS:  We received the most incredible gift a couple weeks ago!  A charming woman called and told me she read on Christi’s site that she wanted a piano now that she’s learning how to use the pedals and now that she needs more keys than are on her keyboard, but that we didn’t have room for one anyway.  Well, she said that no one was playing their digital piano any more and it was smaller than a regular piano and she’d like to give it to us.  Oh my!  Well I knew I couldn’t accept such a generous gift without checking with Shayne first.  Shayne was just as shocked as I and I called this sweetheart back and told her we’d accept.  I can’t even begin to tell you what a joy it is to hear Christi play this beautiful piano many times throughout each day.  I hear piano music while folding towels, putting away dishes, writing, etc., etc.  What a blessing!  And, as we were about to leave this Prayer Warrior’s home she asked if the girls could have a doll.  Shayne said no and I said, “Only if you insist.”  Shayne and I followed the girls back into her home and soon I heard Shayla scream, “AMERICAN GIRLS DOLLS!!!!!!!”  Yes, absolutely unbelievable!  I was stunned.  Each girl picked one.  More lavish gifts on top of the piano yet, shocking!  She said that she didn’t have girls to play with them and trust me – they’re being played with daily now!  It was the sweetest thing!  As I’ve said many times before, “God’s people are good!”  I’m disappointed to say that the thank you card I sent was returned as I do not have her correct address so……..THANK YOU, PATTY A.!!!

A very special dinner also happened this month.  It is our nightly tradition when we all sit down and eat dinner together to go around the table and share the best part of our day.  When it was Christi’s turn she got up and left the table.  She unzipped her school book bag and proudly walked over holding up a certificate with her photo on it for being the 3rd Grade’s Student of the Quarter.  Being a teacher and knowing that this award is for showing good manners, being polite and working hard it was all I could do not to cry.

Christi and Shayla would most likely say their best part of the month was a weekend trip to Cincinnati – staying with their cousins and celebrating Will’s 5th birthday.  They also enjoyed their special time spent with Mrs. Smith and Mrs. Stiffler-Rickel while I was in Canada .

Christi’s April Highlight:  She enjoyed her tour through Heidelberg ’s new Paul E. Gillmor Science Center .  She is looking forward to her 8th birthday on May 12th.  Yahoo! 

Shayla:  Earned her orange belt in Karate and can now ride her bike without the training wheels!  Wow!

Shayne:  His birthday is April 19th!! (Tomorrow!!)

Angela:  Professionally, a couple of very exciting and enlightening things happened this month.  A sweetheart I’ve become good friends with due to taking classes together at OSU is also a Professor in Education at Heidelberg College .  She had wanted to have a morning when we could “switch” places.  (I’d teach her morning class while she’d teach two of my morning classes for me.)  She used to teach middle school language arts and is a certified teacher so it worked out great.  Prior to the “switch”  my students were nervous about having a “Professor”; however, after the fact I learned that she actually brought her puppet “Ernie” into class and he assisted with the discussions and reading I had planned of “The Diary of Anne Frank”.  Leave it to Lori, she’s amazing!  While I put a great deal of time, planning and preparation into my presentation for her college students as well, the time just flew by and soon it was time for me to hustle back over to my own students. 

Secondly, I had my first opportunity to present at an International Conference – the AERA.  (It’s the largest educational conference in the world with nearly 15,000 participants and a booklet of sessions to select from over two inches thick!)  While it was a most incredible experience for professional growth, I must admit I’m glad it’s over – it was a ton of work!  Last spring, my Professor at the time asked some of us if we were interested in submitting our research to the AERA.  We worked very hard over the summer writing up our proposals to be presenters.  In November, we were notified that our proposal had been accepted to conduct a session in Montreal , Canada – and then, much to my surprise, the real work began.  How we were going to share our data, etc.  Now I can look back in reflection at a wonderful, educational time spent with some great fellow doc students at OSU.  The sessions I went to were awesome and even though I don’t speak French it was fabulous to be in a foreign country.  I feel very blessed to have been a part of the conference.

With tears and tremendous sadness, I report we lost three, yes - three fellow Ohio cancer fighters and one NBIV fighter from Chicago – all very near and very dear to our hearts and souls slipped from this place we know called earth in just 12 days of each other: 

Beautiful Amanda, forever 15, was diagnosed exactly one year after Christi and she also treated for neuroblastoma at Columbus Children’s and at MSKCC in NYC.  The beast wouldn’t quit and Angel Amanda earned her wings way too soon.  We were able to attend the funeral home for Amanda and we really enjoyed (and cried over) her scrapbooks she made during her journey. 

The sweetheart Benjamin, forever 8, and his family blessed us by coming into our lives during the fall of 2002 when both kids were often inpatient together in Columbus .  I’ll never forget the kids’ playing Christi’s keyboard together, his absolutely incredible Mom decorating his IV pole with Christmas lights and of course our late night talks – hoping and praying all would somehow be okay.  Now we know the reality of this beast and it will NEVER be “okay”.  It was terribly difficult seeing little Benjamin in that big coffin at the funeral home.  I kept thinking how wonderful he looked and that he should just hop out and start riding his bike around like he did in the hospital’s hallways!! 

One of Christi’s favorite friends from NYC – actually from Cleveland , but the girls met in treatment together in NYC – Olivia (forever ten) died quite suddenly a week ago.  We thought she was doing fine.  How I hate this tricky beast!  We were able to get together with Olivia’s family in Cleveland last fall and had planned to spend the weekend together again with them in less than two weeks.  I actually have sweet Olivia’s ticket to the Children’s Playhouse performance of Balto next week here in our home.  I keep looking at it and thinking she’s supposed to be at the theatre with her family and friends – not in heaven!!  Cancer sucks! 

Finally, sweet Tyler who was diagnosed within a month of Christi and who we met while he was also in treatment at the awesome MSKCC in NYC also participated in the high dose MIBG and the ABT-751 treatments without much success.  Suddenly, last weekend he didn’t feel good and within days earned his angel wings.  Tyler also had the most incredible, awesome parents and our heart breaks for them knowing they’ll never again hold their precious son.  I’ve experienced so many raging emotions due to “death” over the past two weeks.

We are devastated, absolutely devastated beyond belief.  We feel as if we have deep holes in our hearts. If you’d like to leave a message of condolence to Amanda, Ben and Olivia’s families all three sites have been in “Christi’s Clubhouse” for years and Tyler ’s site is at www.getwelltyler.com.  Our prayers are with their families.  We are grateful that we had the opportunity to have known and loved these fine young individuals and we try to find comfort in knowing that God only calls home the very best early and we shall one day meet again in a much better place! 

To the sweet Mothers of:  Amanda, Ben, Olivia, Tyler and of Trevor from our listserv who also died over the weekend of NBIV, I share this poem:

The Chosen Mothers
by Erma Bombeck

Most women become a mother by accident, some by choice
and a few by habit. Did you ever wonder how mother's of
children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over earth
selecting His instruments for progagation with great care and
deliberation. As He observes, He instructs His angels
to make notes in a giant ledger.......

"Armstrong, Beth, son, patron saint Matthew"
Forrest, Marjorie, daughter, patron saint Cecilia"
Rutledge, Carrie, twins, partron saint Greard."

Finally, He passes a name to an angel and says, "Give
her a child with cancer." The angel is curious. "Why this
one, God? She's so happy."

"Exactly," smiles God, "Could I give a child with cancer
a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel,

"I don't want her to have too much patience or she will
drown in a sea of self-pity and despair. Once the shock and
resentment wears off, she will handle it."

"I watched her today," said God. "She has that feeling
of self-independence that is so rare and necessary in a mother.
You see, the child I'm going to give her has it's own world.
She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel.
"No matter, I can fix that. This one is perfect. She has just
enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child
occasionally, she'll never survive. Yes, here is the woman I will bless
with a child less than perfect. She doesn't realize it yet,
but she is to be envied. She will never take anything her child does for
granted. She will never consider a single step
ordinary. I will permit her to see clearly the things I see....ignorance,
cruelty, prejudice....and allow her to rise above them."

"And what about her patron saint" asks the angel, his pen poised in mid-air.

God smiles and says..."A mirror will suffice."

Another dear person to us departed from the earth this past week-P.M Gillmor.  Mr. Gillmor,  long time chairman of The Old Fort Bank, died after a very full 94 years.  He has been a special person to the Thomas Team.  The support of The Old Fort Bank family has been crucial.  We are thankful.  When Christi learned that Mr. Gillmor was ill she immediately went to work drawing and coloring a picture.  Her standard tonic is rainbows and flowers.  She remembered, as we do, the tender moment she shared with Mr. Gillmor at a retirement reception held in his honor when he retired as Chairman of the Board.  We shall miss you, P.M.

Thanks for checking in and for all of your blessings!  I shall post again mid-May with an update about the new “8” year old in our lives – you know the Cre”8”tive One, the one an oncologist once told us wouldn’t live to see her 7th birthday and soon we shall celebrate her “8th”.  (I think I’ll send him a birthday party invitation reminding him not to dash others’ hopes and to remember what divine intervention can do.  Smile.)  Thank you, Precious Prayer Warriors!!

Warmly,
the Thomas team Mom, Angela
www.ChristiThomas.com

Christi’s Joke:  Oh, she’s not awake yet for school and I see I forgot to ask her for a joke last night when I started this entry.  Next time!

What’s Next?  She shall continue taking her oral chemo (ABT – 751) every day for the next 2 weeks.  This is currently round #12 and we are filled with gratitude that it has kept her disease stable for a year.  Whew!  She’s schedule to take two more rounds and then to return to CHOP in late June / early July to see if it’s still working.  I recently read on another NBIV fighter’s website that Christi was in her 2nd year of ABT – wow!  That is cool and I never thought of it that way!  You go, girl!

Shayne’s Birthday is tomorrow!!  What a wonderful husband and father he is!!

Saturday, June 4th:  The Motorcycle Poker Run to benefit “MAKE A WISH”.  We hope you can join us – whether you have a motorcycle or not!  Registration will begin at the AmVets in Tiffin at 10:30 AM with motorcycles scheduled to pull out – first riding through Tiffin , at noon .  The cost, which includes the official tee shirt (It’s GORGEOUS!  Thank you, Rush Business and Printing!!), a poker hand and BBQ chicken dinner is $20.00 for one rider and $35.00 if two are riding on one bike.  The motorcycle ride will go to: Grates, Fremont , Wharf, Port Clinton, Harrison ’s, Bettsville before returning back to Tiffin to the VFW hall for the BBQ dinner.  While we do not own any motorcycles, we will be at the pre and post events and the girls are hoping that they will get to ride on a motorcycle in the parade through town since they had so much fun last year.   For those who may be just interested in stopping by the VFW in Tiffin for the chicken BBQ dinner or to pick up carry out dinners, the cost will be $6.50 starting at 4:00 PM .  All proceeds will be lovingly donated to Northwest Ohio ’s Make-a-Wish Foundation – granting wishes for children with life threatening diseases and creating memories for families which can never been taking away from them.  A huge THANK YOU to all the volunteers and businesses that continue to honor Christi through this great event.

CHRISTI'S 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

  • Dec. 2003 – 676 (470-900 normal range at CHOP, for age 6 years)
  • April 2004 - 587 (470 - 900 normal range at CHOP, age 6)
  • August 2004 - 684 (420 - 750 normal range at CHOP, now age 7)
  • October 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)
  • January 14, 2004 – 584 (420 - 750 normal range at CHOP, for age 7)
  • Wasn’t conducted in April at CHOP – we’re not certain why not, but it wasn’t.

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)

March 2005 

5.6

6.1 (prior to starting round #11 of ABT)

April 2005

4.3

5.4 (prior to starting round 12 of ABT – 751)

ECHO (measures heart damage) ( NORMAL SHORTENING FACTOR RANGE :  greater than 30% is normal):

  • May 2004 - 39%
  • August 2004 – 34%
  • Oct. 2004 – 36%
  • Jan. 2005 – 36%
  • April 2005 – 36%

NORMAL BLOOD COUNTS:

White 5.0-14.5

Christi’s was 4.0 (Low)

Hemoglobin (11.5-15.5)

Christi’s was 11.0 (low)

Platelets (150-400)

Christi's was 165 (normal)

ANC (over 500)

Christi’ was 2,120

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