Journal Entry


Monday evening, January 17, 2005

I believe that unarmed truth and unconditional love will have the final word in reality. That is why right, temporarily defeated, is stronger than evil triumphant.

      Martin Luther King Jr.

The late Reverend King said the above upon his acceptance of the Nobel Peace Price in December of 1964.  While not designed for Christi’s battle, it certainly seems to apply here as well. The love of God’s people is much stronger than the cancer of the devil and we have witnessed incredible love bestowed upon Christi all along this journey.  Due to the teacher in-service day, there was no school for students today.  And I think after Christi’s stressful trip to CHOP and back she really needed today spent at home.  She is still a bit “under the weather” with many bathroom runs, sore throat and a cold/cough; however, those are all normal things - not cancer related, and we couldn’t be more pleased about “normal things”.  She’ll be just fine shortly, I’m certain!

Thanks to many awesome folks she sold nearly 60 boxes of Girl Scout cookies prior to her departure and she was also able to make a very nice donation of soda pop tabs to the Philadelphia Ronald McDonald House.  Even though she was not feeling very well Shayne said she had a HUGE smile on her face with every pop tab she deposited.  Thank you, everyone!  You have so richly blessed us and provided Christi with such joy all the while teaching her the important lessons of life – helping others!

It was difficult, as one could imagine, continuing on here – just little Shayla and I without Shayne and Christi knowing fully what may be going on at the hospital and everything else involved being 500 miles away, but we did okay even though I felt myself on the verge of tears many times; I knew I couldn’t let Shayla see me cry as not to cause her worry.  (And Shayla is always a good sport; it was just her mom who was terribly uptight!  Smile.)  Testing week, as many cancer families refer to it, is always filled with tremendous stress – nearly overwhelming at times.  EVERYTHING lies in the results of all of the scans.

My awesome cousin Tricia watched Shayla for me on Wednesday night so that I could attend my OSU class.  It’s a Literature class this quarter; and a great one with another tremendous OSU Professor helping me to become a better teacher.  Shayla had a ball with Tricia and Aaron and their pets while I was on campus.  They are an awesome couple that we simply do not see often enough!  Shayla was non-stop chatter (imagine that!) all the way home about all of her great adventures with Tricia and the pets!

Prior to Christi’s departure I had been extremely concerned about some pain she had been experiencing in the back of her neck just under her head and down her spine.  I had also felt a “bump”.  Knowing that neuroblastoma is a cancer of the nervous system and knowing how it likes to attack the spine and spinal column, I was getting myself quite worked up.  Some NB kids become paralyzed and I know this wouldn’t sit well with Christi who typically has a very positive attitude.  (For example, when the horrible ice storm hit last week along with all of the havoc it created, her little “birth tree” was damaged.  I pointed it out to her and she said, “Well, at least 2/3 of it is still there,” and then she burst into her awesome fit of giggles that absolutely warms my heart.)  Thank God for Christi’s awesome attitude and that wonderful laugh one cannot describe, but if you’ve heard it – you know it!

Now for the reason we’ve all been drawn together, the medical news of “The Thomas Times”. 

While not able to get a room at the Ronald McDonald House on Wednesday, they were able to check out of the hotel and obtain a room for the rest of their time in Philadelphia .  While stressful for Shayne (and perhaps Christi, but she always takes things in stride and amazes us all with her wonderful attitude hopping from test to test and making the best of all of the nerve-wracking wait time when dealing with doctors appointments – and this time being sick with the flu) all went well with her tests and procedures.  I’m so grateful that they’re safely back home now.

I called Shayne Thursday morning prior to teaching my first class only to learn that they had arrived shortly after midnight, but Christi had been up most of the night vomiting at their hotel room.  My heart suddenly became heavy knowing fully that they’d never “put her under” that day for her bone marrow testing.  I called back during my lunch break to see what Shayne was able to work out.  Christi’s vomiting had slowed and he was trying to get her bone marrows scheduled for Monday as no anesthesia was available on Friday.  (Shayne later learned that the clinic would be closed due to MLK day on Monday so it would have to be Tuesday.  Ugh!)  I quickly called my sister to see if Shayla and I could spend the weekend with her down in Cincinnati thinking I’d be a nervous wreck here by myself all weekend and then I went to talk with Caroline and Lisa while their students were at recess knowing I’d feel better if I could just tell them what happened.  A phone call after school gave me a lot of reassurance!  Whew!  By that time, Christi was feeling a bit better (most likely the 24 hour flu bug) they were able to get her MIBG radioactive isotope injected into her mediport in her chest and they did her ECHO.  Dr. Maris was contacted and he said that with her recent trend of great blood counts, if she’d have a clean MIBG scan on Friday there would be no reason that he wouldn’t want to keep her on the ABT for three more rounds so that was what brought me to my knees countless times in prayer on Thursday night

Friday’s MIBG scan was at 10:00 AM .  I again called out to Philly on my lunch break and found Shayne and Christi eating at the CHOP cafeteria.  While Shayne hadn’t yet met with Dr. Maris, he did not see anything lighting up on her MIBG scan himself.  (Remembering fully seeing her little body “light up like a Christmas tree” not so long ago – Spring 2003, with bright spots showing in her:   pelvis, ribs, spine, femurs, etc., this was a tremendous relief.  I was on pins and needles fully expecting to have discovered a new tumor or “spots” along her spine.)  Praise God it appeared to be clean – NO NEW CANCER!!!  While in the scan room they did re-scan her pelvis area which had Shayne’s mind racing and stomach turning trying to be brave; however that just turned out to be “radioactive pee” and was gone after a trip to the potty!  Whew!  Hee hee!  (Good one, Christi!  You always keep us laughing and at the most stressful of times!  What a hoot!)

While at the hospital, Shayne was able to meet a 13 year Neuroblastoma stage IV survivor!  And this young woman, there for routine check ups, wasn’t diagnosed under the age of 18 months - which typically has a very good prognosis.  Wow!  Now that gave Shayne tons of hope and inspiration!  Christi had the time of her life, despite not feeling very well at times, by passing out the awesome finger puppets Karel had made for Christi to give to the “sick kids” at the hospital.  (She never puts herself in that category often saying, “I’m not sick!!  I just have cancer.”  OK, Christi!) Shayne had tears in his eyes when one mom at the Ronald McDonald House said to him, “I’ve never seen a nicer child.”  (Of course – her sister Shayla was 500 miles away!  That always makes a difference!  Smile.)

With shaking fingers, I called Shayne on Friday afternoon to learn of the PRELIMINARY (STILL not yet official!) MIBG test results.  Shayne told me that Dr. Maris said that the MIBG was clean – NO NEW CANCER!!  PRAISE GOD!!!!!!  THANK YOU, sweet Prayer Warriors!!!!!!  We really couldn’t have received any better news than that! Soon they were packed up and back out on the road headed home – along with three more rounds of oral chemo!  Yahoo!  I exhaled in the biggest way possible and the smile never let my face the rest of the night.  Friday night found me working on lesson plans, watching TV with Shayla and doing the laundry – all with an extra bounce in my step.  Sure, I would have loved to learn what’s going on in her bone marrow, but THRILLED was I to have my family driving home and with more chemo and apparently no new spots of cancer.  I know the average person wouldn’t be thrilled about their kid having cancer and being on chemotherapy for three more months, but truly there couldn’t have been better news given the horror of this beast.  I felt like we just bought three more months of life with this amazing little girl and received a free THREE MONTH “GET OUT OF HELL FREE CARD”!  Yahoo!  I shall now relax a bit, see that she gets her chemo every day, gets her blood drawn as schedule and not get myself worked up - until at least late March!  (smile) Our prayers were answered!  Thank you, Lord!

May He grant you your heart's desire
and fulfill all your plans. May there be shouts of joy when
He hears news of your victory, flags flying with praise to
God for all that He has done for you. May he answer all
your prayers!
(Psalm 20:4-5)

Later on Friday night I was able to “really talk” with Shayne as he drove home and she slept in the back.  I learned that her blood counts were also again nearly normal at:  11.4 hgb, 170 platelets, 4.8 white with an ANC of 2,880.  (Yahoo!)  Her weight was up five pounds and she’s grown three centimeters.  (Yahoo!)  Dr. Maris was able to spend a lot of time with Shayne and every question Shayne had prepared in advance of their meeting was answered by Dr. Maris as the conversation naturally went there. 

Why is she doing so well on this drug while others have had horrible side effects?  (They’re researching it and hope to find out too.)  What are the long term side effects? (No long term survivors, no clue.)  Can she get her blood counts checked less frequently? (yes.) Of course the discussion was much more technical, lengthy and serious in nature – but that was the gist of it.

ANNOUNCEMENT:  While I will still write privately, it is my intent to no longer publicly share my weekly journal entries as not to bore you, but instead to publicly post a just monthly update on Christi’s website while things continue to go well.  She’s not in remission, has never been in remission and most likely never will be, but she’s “Steady and Stable” right now and we’re THRILLED and we’re THANKFUL.  I will also post fewer pictures as that takes Eric a very long time to do.  Eric has so lovingly volunteered countless hours of his precious time and we will forever be grateful.  He is a true Angel on earth and a most compassionate, caring and considerate young man working faithfully and tirelessly nearly daily for our family for nearly 2½ years.  The website he created for Christi reached 400,000 hits today.  I think that also demonstrates how wonderful his work has been – literally touching lives around the globe.  Therefore, with things currently going well, please consider “no news is good news” and we shall finally allow Eric to get a bit of a break - unless things go wrong.  Then I’ll update!  (This should also allow Eric to spend more time training for the race Shayne challenged him to in May! Hee hee!  Love ya, Webby!)

Please remember the tests results were only PRELIMINARY.  Just last weekend, I spoke with a sweet friend whose son treats in New York and at CHOP.  Her son’s preliminary scan was “free of cancer” and less then 24 hours later the final report showed “extensive new disease”.   So if something changes with Christi’s reports, I’ll immediately post the new news, but until then please assume that no new cancer was found and please keep our brave little friends in your prayers as well.  I often say, “Christi’s Prayer Partners are the best!”  And without a doubt, that’s true!  Thank you!

As always, thanks for checking in, for your continued prayers and support, and for letting us share our precious little spunky “wonder gal” with so many of God’s great people who have provided loving divine intervention and who have gotten her thus far.  We’ve been so richly blessed!  We draw our strength knowing others love and care about Christi too.  We’ve never felt like we’re in this fight alone.  She’s truly God’s child and we have been so fortunate to have had the opportunity to share her with others.  Thank you for being part of the Christi Crew! 

And to my fellow Cancer Friends who may be checking in, you remain in my heart and in my prayers.  Today I’d like to share the following selected just for you:

"We must accept finite disappointment,
but never lose infinite hope."
Martin Luther King Jr.

With current feelings of hope and finally tremendous peace,

The Thomas team Mom - Angela

Christi’s Jokes:  What was the last thing that went through the bug’s mind before it smashed into the windshield?  (Its legs.) Why do bees hum?  (Because they don’t know the words.)

Shayla’s Funny:  Shayla – our little pack rat, the girl who doesn’t like to part with anything, brought home from art class a snowman art project.  Shayne said, “Shayla, I’m going to mail this to Grandpa because he doesn’t’ have anything on his new refrigerator.”  Shayla quickly replied with desperation, “We don’t have anything on our refrigerator either!”  (And she was right.  I had just removed all of the lovely holiday pictures folks had sent our way to put in my photo albums and therefore her snowman picture now proudly hangs on our fridge.  She’s going to make another one to send to Grandpa.  We love you, sweet Shayla!)

Angela’s Humor:  Shayne told me that there was a very large photo of Shayla framed and hanging up in the living room at the Ronald McDonald House.  Remembering living there for months and that more than a few times “the fast little critter” got away from us and soon an announcement would be made, “Would Shayla’s parents please come to the office to pick her up?”  (Geez!  One can’t even imagine how embarrassing that was!) I said to Shayne, “Was there a WANTED signed over it?”  So our joke is, Shayla is framed at the Ronald House in Philly!

What’s Next?  She’ll continue with the oral chemo and getting her blood counts checked.  Shayla’s sixth birthday is in February.  Christi and Shayne will return to CHOP in early April for tests/scans and hopefully more ABT.  Shayne challenged “Webby” to a duathalon in May so we’re already looking forward to the Cook’s visit to Tiffin .

Christi’s Treatment History in no particular order:  two surgeries, ten rounds chemo, four rounds monoclonal antibodies, two rounds high dose internal full body radiation, three rounds 13-cis-retonic acid, currently in the midst of her 9th round oral chemo (ABT – 751) and feeling great.  (Full time in school and taking: ballet, karate and piano each week.)  We’ve been richly blessed!

FROM GRANDMA:

Some websites of cancer fighting children are maintained by their Grandparents.  I thought the following was so sweet and wanted to post it here – hopeful that one day Christi will have forgotten about the pain and suffering she had endured and she will one day read my old journal entries and know how much her Grandparents love her too!  Therefore, here’s the wonderful Grandma Nonee’s update of the mid-January tests/scans which she sent to her friends:

Dear Christi Warriors - The news is Great!!  Angela just called after talking to Shayne in Philadelphia with Christi!!    The MIBG scan showed NO NEW CANCER!!  The bump on her neck is only a vertebra that protrudes a little and her pain there is gone.  Thank you Lord!!   They did not test the bone marrow (which still showed a small amount of cancer on the last test). They think Christi had a stomach virus.  When she got to Philly, she was vomiting all though the night. (The kids at her school had been passing that around.)  The bone marrow tests (she has to be put under for that) was going to have to be done on Tuesday next week.  The doctor decided not to do that if there was no new cancer showing.  He is not going to change her treatment even if the bone marrow is clear.  This oral chemo seems to be working. He wants her to continue it. Also she will be only doing blood work once a month instead of once a week, as her blood counts have been back to normal. Thank you Jesus!!  Christi is feeling great!! Her only complaint - get this - she didn't have enough time to play with all the things she wanted to play with at the Ronald McDonald House!  She says next time she would like one more day.  (She always has more ideas than she has time for.)  What a little energizer Bunny - we are blessed!

It is wonderful to have God's family praying for Christi and her family!!   Thank you so so much!!! 

God Bless you,
Carolyn & Joe

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