Journal Entry

Friday morning, September 23, 2005

"A hundred years from now it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove . . . . but the world maybe different because I was important in the life of a child."

“Touching Countless Lives: Christi & Eric”

This entry is dedicated to the talented, compassionate and downright wonderful Mr. Eric Cook (Christi’s webmaster, aka “Webby”).

Today marks the 3rd anniversary of the birth of; our deepest thanks to the incredibly talented, kind and amazing creator of it all - Eric Cook.  Thaaaaaaaaaaaaaank you, dear Eric!!  During those difficult early days, we didn’t like making the tear jerking phone calls to give updates on what was happening as it took us away from Christi.  It was emotionally and mentally draining, was getting expensive and despite our retreats out into the hospital hallways looking for cell connections to work or pay phones to use, it unfortunately allowed Christi to still hear tidbits about her life that must have been downright terrifying to a small child; therefore, Shayne created a caringbridge website to update our family and friends on Christi’s situation.  He asked his dear friend from graduate banking school to take a look at it since Shayne often refers to him as a “computer geek”.  I guess Eric wasn’t very impressed, because just days later this incredible website was up and running.  We praise God for Eric!!!!!! 

Eric’s website, with nearly a half a million hits, has allowed people all over the world to follow her journey and to specifically tailor their prayers.  I have received countless emails, mostly from strangers, telling us how Christi’s fight has made a difference in their lives.  (A prisoner who prayed for the first time.  People who are now regular blood donors.  New advocates for cancer research. Dads who now hug their children and tell them how loved they are. etc., etc.)  These are the very special emails that I will one day print off and put into a special book for Shayla so that she can see that her big sister’s life wasn’t lived in vain, but that her life here on earth helped to make the world a bit of a better place.  This gives me great comfort – and it is because of Eric’s tireless labor and unbelievable love, commitment and dedication.   Thank you, sweet Eric – a true Angel on earth!

So, this morning I’ll start with the good stuff first!  A week ago was Christi’s very first school field trip!!!  She skipped kindergarten so she missed the kindergarten trips to the corn maze, art museum and COSI that year.  She was in treatment in NYC for the first grade Toledo zoo trip, and she was in treatment in Philly for the Cleveland zoo trip in 2nd grade.  She made it to third grade, but due to finances the school cancelled the field trips last year.  This year the wonderful PTO agreed to pay for the bussing costs of field trips, so at last Christi made it to a school field trip as a fourth grader, yahoo!  She LOVED the 8 mile journey and the heritage village experience at the festival.  Shayne attended as a chaperone in charge of a group of four and he loved it too!!  Thank you to the great Mrs. Smith, Mr. Powers and the PTO!!!!

Friday night brought even more fun and special events!!!  Our sweet and absolutely amazing friends at COSI had planned a very special once-in-a-lifetime evening for us.  They managed to keep some great surprises secret while letting us in on tidbits about the amazing party they planned for us.  We arrived at the meeting spot – a hotel in downtown Columbus , and soon “Harriet” and “Elizabeth” (aka Traci and Jenn) dressed in their Adventure’s costumes stepped out of the back of a SUV limo with a sweet chauffer who then drove us all of three blocks to COSI.  “Sweet!!!” was Shayla’s comment!

Upon our arrival, we learned that COSI was closed for the evening; however, a special party was planned – just for our friends and family.  (I’m still in awe about the large number of COSI folks who gave up so much of their time, talents, energy, money, etc. to work overtime and to make all of the magic happen.)  Amazing folks, amazing place!  COSI’s Brian created a fabulous “kid friendly” meal for the little ones at the party – and we big ones devoured it too!  Imagine a buffet of:  pizza, popcorn, snack mix, rice krispies, fruit cups and chocolate covered strawberries – not to mention the candy decorations and beverages.  Wow!  It was great to see my beautiful teacher friend Diane and her lovely family.  (It was Diane who years ago told me how fabulous COSI was for toddlers and that I needed to get Christi there.  And I did, and she was right!  18 month old Christi LOVED her first trip.  And it was Diane who told me about COSI’s membership allowing attendance again and again – as well as offering free admittance at 250 other science centers. Thanks, Diane!)  It was tremendous to see my incredibly awesome OSU Professor (THE “middle school guru” in my book) with her fabulous daughters and grandkids.  Sweet Katie caught us by surprise arriving from Illinois and I’ll never forget Shayla and Christi’s faces when they saw their cousin Shelby from Cincinnati walk up!  Amazing!  Thanks to my Aunt Marty, Uncle Jeffy, Mom and Paw Paw Joe we have video and pictures galore to forever keep the memories safe.  Oh, what a night!  Thank you, everyone!

The COSI folks worked and shared their talents, blessings and gifts with us for 4 ½ hours!!  I am truly speechless with everything they did.  I can only shake my head as I’m unable to fathom the love of these folks who gave so much to us.  Truly, I felt very awkward being a recipient of such graciousness.  When I asked Traci how all of it happened she said something like, “I just put out an email saying we are having a private party for Christi Thomas and everyone jumped into action. We love you here!” (Thank you, sweet Kim and Kathy!)  Amazing folks, amazing place!  Thank you, everyone!!  And like Friday night until 10:00 PM wasn’t enough, the girls wanted to go back to COSI on Saturday morning – so we did and we didn’t walk out until 5:00PM .  At least we got to take our favorite COSI friend away with us and whisk her off to a restaurant!  Thanks, Traci.  And the girls seemed to think that they needed just one more day at COSI in order to really see and do it all, but Sunday was absolutely out of the question!    (Christi’s chemo for Sunday morning was at home in the fridge.)  Sooooooooooo funny!  Good try, girls!  They can never get enough of that fabulous hands-on science museum.

Now back to the medical news.  We’ve increased her anti-nausea meds which have helped with her vomiting a great deal.  Drinking the one chemo and taking the many pills has been cumbersome and stressful; however, we finished all of the 2nd round and given the horror of it all I have no complaints and would gladly continue this trying and tedious schedule for years if only the disease would allow it. 

Her blood counts last Wednesday were: 12.3 hgb, 9.4 white, 177 platelets with an ANC of 7,400.  (I actually emailed Dr. Maris in a panic because they were so high.  He told me that I wasn’t used to seeing good blood counts and that I should relax and enjoy the completely normal report!)  The LDH was still quite elevated at 225, but that was just one number higher than a week earlier.  This Wednesday’s blood draw was scheduled; however, when Shayne emailed me and said to cancel her blood appointment I agreed.  Why put her through the needle poke, wait around at the hospital, spend the money not to mention increase the stress and tension level even more by learning the results when she’ll be back at CHOP in a matter of days?  There is no need.  The numbers won’t change anything at this point so we came home after school and played the piano until it was time to leave for CCD.  She’s mastered “ Red River Valley ” and “It’s a Small World”.

She is still feeling very well and today she’ll be at Heidelberg College pouring lemonade to raise money for pediatric cancer research through an Alex’s Lemonade Stand on campus.  I hope it is a big success – there is nothing this girl needs more than a cure!  (I just don’t believe it’s going to come soon enough for her, but we hope it will help others in her situation down the road.)  Meanwhile, we’ll keep praying hard for a good quality of life to continue for a long time!! 

So in closing I again reflect upon this wonderful website which has brought us all together.  There is no way Eric could have known that what should have been a 9 month task, turned into three years of constant – often daily work for Eric.  Many folks have raved about Christi’s website to me; however, I’m responsible for none of it.  I email the pics and journal entries to Eric, who even lives in another state.  While it appears to me that he simply waves his magic wand and it’s all up on the site, I have however seen him in action and there is a ton of work he must put into it.  Eric, please accept our deepest gratitude and appreciation for your love and hard labor!  Happy 3rd Birthday,!  Thanks, Eric!!!!!!

With gratitude,

PRAYER REQUEST:  That the test results next week indicate that this chemo is reducing her disease, or at least keeping it stable with no new areas of cancer showing up.  Lord, hear our prayers.

Christi’s Joke:  What do you call a boy hanging on the wall?  (Art)

What’s Next?

Alex & Christi’s Lemonade Stand today at Heidelberg College .  (Thanks, Professor Lori Grine and all!)

Christi Thomas Honorary Blood Drive for the American Red Cross on Friday, October 21th from 9 – 3 at Hospice.  Please come donate the gift of life if you are able.

In a few days, Christi and Shayne will load up the van and drive to CHOP.  I don’t believe our stress level has ever been higher.  We know what we are up against and we don’t like it one bit.  We also know it’s totally out of our control.  When I had my hair cut last week my beautician informed me that I am “shedding” and I have never done this before.  Of course she joked that with all of the stress of the past three years it is surprising that I still have any hair left on my head, but this recent development concerned her and she told me I need to have my thyroid and blood pressure checked.  I’m certain I’m fine – just a wee bit stressed (smile).  I had actually noticed it myself, but didn’t think it had anything to do with my health or my life.

Last week, I did the hardest thing thus far and that was actually calling the funeral home to begin arrangements – arrangements I hope we never need to put into action, but that took me weeks to get up the guts to do and I must admit I hung up the phone a few times in tears instead of actually dialing the number.  Perhaps the first call will be the hardest and the last – ah, well, wishful thinking – and we’ve been emailing instead now anyway. (smile)  It’s always easier for me to talk about “this stuff” on email anyway; it doesn’t seem as real if the words are not spoken.  Again, I hope to never need to make the official call to start the ball rolling, but we want to be prepared to do certain things the way we desire, if needed.  I don’t want to look back and think it was thrown together and not a good celebration of her life.  (And hey – if I don’t get to help plan a graduation party or a wedding, for this 8 year old who has taught me so much about life - we might as well do this up right!)

And Tuesday night I did the next hardest thing.  On my way to chair a teachers’ meeting in Findlay I stopped at the cemetery.  I asked my Dad if it was okay to have Christi’s body join his and Grandma and Grandpa Smith’s out there, down in the ground, and a huge thunderstorm didn’t roll in, so we’ll take that as a “yes”, he agrees with our choice.  I also stood beside Dad’s spot, on top of the exact place where Christi’s body would go, if she were not to make it, and I prayed so hard that her body would never be buried there as a child, but that I would take that place beside my parents instead.  And with a wipe of my tears and my “face of denial” back on, I drove off to run the meeting.  I’m certain none of the 20+ teachers there had a clue as to where I had just been.

So now, we hope and pray with tremendous intensity for good news in testing results.  (That would be that Christi’s disease is decreased or stable.)  We pray for no new areas of cancer as that will tell us that this latest chemo concoction isn’t working and that she will have to stay in Philly for what will most likely be a very lengthy stay.  We’ve packed the plastic storage bins Caroline and Doug got us for our treatment life in NYC.  We’ve packed the heater (Thanks, Bakers – the Ronald House rooms can be quite cold!) and the answering machine, the hot pot, the rugs, the slippers, etc.  Nothing will please me more than having to unpack all of those items in less than a week!  Shayne will have our extended stay items with him and that way Shayla and I can just fly out and join them if need be.  I will not let Christi endure harsh treatments without my presence beside her. Daddy is a lot of fun, but no one can rub her back the way I do every night when we’re finished reading and I would be a total wreck being 500 miles away from her knowing it most likely will be our last months together.

Your prayers during this most stressful time are greatly appreciated!  Thank you!!  Thank you very much!!