Journal Entry

Sunday night, September 11, 2005

"If you're going through hell, keep going." (Winston Churchill)

Today marks the 3rd anniversary of Christi’s diagnosis with Stage IV neuroblastoma; however, I’m finding it very hard feeling sorry for myself.  She is still alive and for the most part still feeling great!  We’ve had three extra years with her that we never would have had had she been born twenty years earlier and given the devastation suffered by Hurricane Katrina victims and reflecting upon today’s 4th anniversary of 9/11 – the Attack on America, we seem to be sitting pretty.  Thank you, dear Lord and powerful Partners in Prayer!

Shayne and I determined about two years ago that we’d always try to do something positive on this day; therefore, that amazing and incredible husband of mine ran a half marathon today in Cleveland .  (Yes, that would be thirteen miles!!!!! Goooooooo, Shayne!)  Dressed in his Alex’s Lemonade tee shirt and yellow bandana he left at 6:00 AM and said that it’s going to be thoughts of Alex and our other Angel friends that get him through.  Amazing to me, he finished in less than 2 hours so I think our little friends lifted him up with their sparkly little Angel wings and carried him to the finish line!  Way to go, Shayne!  I’m so proud of him! 

Although not able to shake the memories of what we were doing exactly three years ago, to celebrate Christi’s life this year, we went to a water park called Geauga Lake and Wildwater Kingdom which is included as a free amusement park with our Cedar Point passes.  As the girls ran around, played, swam and splashed in the water for hours on end, Shayne and I again discussed the possibility that these may be our last good memories of the girls playing together.  However, we pray that is not the case.  We also discussed the fact that she has been so nauseous that she vomited on Friday night and again on Saturday morning, but by noon was in the water playing like she wasn’t a kid on chemo.  My, what a waterpark will do for ya!  (hee hee).  She felt great Sunday afternoon at Cleveland ’s Natural History Museum, but “tossed her cookies” again tonight.  This has been a tough round of chemo for her thus far, and she has 8 more days to endure.  Well, enough about cancer!!

Last weekend the sweet and incredibly generous Leis family treated us to a most amazing indoor waterpark called Kalahari in Sandusky .  (Thanks, Tom & Lori!)  The six kids played nicely together and since Tom’s awesome Mom used to baby-sit me when I was a young child, Tom and I had a great time jabbing each other with things we used to do as kids.  (“Marylou!!  Tom hit me with a feather pillow!  I’m allergic!!!”)  And as Shayne and Tom chased each other down the hotel hallway like kids in college I had to remind myself that yes they were college roommates for three years and why not laugh and play like they used to do?!  We also had some special keepsake memories created as Christi was sketched – it’s lovely, and both of the girls’ handprints, names and ages were put on a special keepsake plate which I’ll forever treasure.  All Moms should have these special treasures.  No one knows what lies around the corner; tomorrow may be too late! 

Last week “the routine” started back in full swing.  Dance classes started for both the girls as did their piano lessons and religion classes.  (As I sit here and type this entry Christi's lovely piano music fills the air.  I'm so blessed!)  A week ago I didn’t think Christi would be strong enough to make it through one hour long dance class, but Tuesday night she did her 60 minute jazz class followed by her 60 minute ballet class at Heidelberg College and loved it.  Whew!  Thank you, dear Lord!! 

My favorite memory of the week was when it was time to leave for CCD.  Christi asked me to braid her hair – a first!  So with joy and delight, I did (And thinking it may be my first and my last time, I took some pictures).  During church one of the hymns was “Here I am, Lord” and as I heard Christi’s little voice singing along as she sat beside me I choked back tears knowing that a few days prior I wrote that song on my “most likely” list of hymns I’d like used at her funeral.  How I pray I can just tear up that list one day. 

As we near closer to the one year anniversary of the sad death of the awesome Shane from Michigan, I must share some words from his sweet mother (and fellow educator) that have given me comfort and encouragement in recent days telling me that Christi will determine her timeline just like her son, Shane, did in his long, long fight with neuroblastoma.    

“When Shayne relapsed in 1999 he first said that he thought it was kind of funny that Dr. Yanik took it harder than he & I did. Then he said "Well, we've done this before, we can do it again. At least this time we know what to expect." That's pretty much the attitude he kept for the next 5 years too. Years later Dr. Yanik told Shane that he thought that this was a fight that his body just wouldn't be able to win. I felt so bad because he broke down part way through, which really got Shane's attention then. The next day Dr. Yanik came in and sat at the end of his bed, shook his head and he told him that 'medically', he shouldn't have still been there. After he left Shane said, "I don't know, that's twice that he's been wrong, but don't tell him I said so." What a guy!!”  Thank you for sharing, dear Cathy!  And I’m certain your kindergarten kids love you as much as your middle school students did.  Best wishes and much love!

I have some VERY EXCITING news to share!!  A dear friend, fellow doc student at OSU and Heidelberg Professor has informed me that one of her education classes is again planning to coordinate another Alex & Christi’s Lemonade Stand on campus!!  Yipee!!  Her students remembered what was done last year and they wanted to do it again.  So sweet!  Oh, Christi will be THRILLED when I tell her this great news!  The date that they’ve set is Friday, September 23rd from 11:00 AM to 1:00 PM .  If you happen to be around Heidelberg that day, please stop by (outside the Education Building right on Greenfield Street) and let Christi pour you a cup of lemonade – raising money for pediatric cancer research one cup at a time!  (THANKS, Lori & Heidelberg College – a cure can’t come soon enough!!)

Medical News:  Her blood counts on Wednesday were great at 11.6 hgb, 3.7 white, 178 platelets with an ANC of 1600, but the biggest blessing in my book was that her LDH (the one that measures the tumor activity level) was down to 224.  While still elevated well above normal and something to be very worried about, it gave me a bit of comfort thinking that this latest treatment attempt (irino, temador, cebrex) is maybe doing something.  (Remember, the LDH had been clear up to 330.  Normal is 100-190.)  The next day came all too soon as that is when she started back on the second round of these new chemos.  They really are hard to swallow (literally).  She isn’t feeling as well as she could be, but for the most part is doing great; I just wish her tummy wasn’t so “tender”.  It’s so hard to see her trying not to get sick, losing it sometimes and knowing she’s not feeling well.

Thanks so much for checking in!  God wiling I will write another update about Christi living life to the fullest next year on September 11, 2006 which would be the 4th anniversary of her diagnosis.  Her prognosis upon diagnosis back in 2002 was a 35% chance of surviving 5 years and a 5-10% chance of living 20 years.  Of course all of that has been slashed and we’d love to have those statistics back again, but living another year is my goal, my hope, my dream!  Thank you for getting us thus far!

With gratitude,

Special Message:  To Christi’s sweet prayer warriors – the Wynn’s (Mrs. Wynn is an incredibly kind and sharing middle school language arts teacher from Louisiana ) If you happen to read this, please email me and let me know how you are doing.   We’ve now heard back from our other friends in the area of Hurricane Katrina; however, we’ve not heard from the Wynn’s yet and hope and pray they are alive and doing as well as possible.

Christi’s Joke:  to the magician:  Why didn’t you pull a rabbit out of your hat?  Magician:  Because I just washed my hare and I can’t get it to do anything.

What’s Next?  This round of chemo will go about 9 more days.  Pending no pain or sudden increase in LDH level, Shayne and Christi will return to CHOP following this second round.  While they hope to return home in about 56 hours (But who’s counting – hee hee –JUST MOM!!!!!!!) I will have them packed up for a lengthy stay in case need be.  If her disease is worse that is the plan at this time.  CHOP has some options for her, but they will require her to be in the city for some time.  Dr. Maris has told us that this chemo will not hold her disease back, yet we hope it will for a few more rounds at least.  It’s been fabulous to be living a somewhat normal life (or at least pretending we’re okay!).  Shayne and I have determined that “quality of life” is very important to us at this time.  If we can remain at home instead of being in a hospital far away with no better results or chances, we will stay at home and be “normal” as long as possible.  We pray that it will last for a very long time.

“When life gives you lemons, make lemonade”  Christi & Alex’s Lemonade Stand:  Friday, September 23rd at Heidelberg College / Education Building / Greenfield Street . ( 11 AM to 1PM )

Christi Thomas Honorary Blood Drive at Hospice:  Friday, October 21st 9:00 – 3:00 .  Please join in by giving the gift of life!  Christi is hoping to be on hand to help squeamish donors, but that will depend on “the beast” and God’s will.

While in the midst of capturing special moments of Christi, it was suggested I record her favorite things.  I’ll put it here so I don’t lose it (smile).

Nickname: Christi
Age: 8 years
Favorite color: green
Favorite snacks: popcorn, nachos with cheese, cheese sticks, gogurt, goldfish
Favorite computer games:  Paint and Play Pony, Vet Emergency,
Favorite websites:  Neopets, Cartoon Network, Nick Jr
Favorite food:  mac and cheese
Favorite animals: cats and horses
Favorite activities:  reading and playing computer
Favorite subject:  math
Favorite colleges:  Heidelberg College & the University of Pennsylvania
Favorite board game:  Neopets (Thanks, Godfreys!)
Favorite sports: ballet and jazz,
Hobbies: piano playing, horse riding
Favorite team: Seneca East Tigers (Her school)
Favorite cartoons: Teen Titans, Fairly Odd Parents, Sponge Bob, Pokemon
Favorite PBS shows: Cyberchase, Arthur
Favorite TV show: Full House
Favorite song:  “So Yesterday”
Favorite series:  The Ashleigh Series (horse books)
Favorite book:  Stardust’s Foal
Favorite author:  Judy Blume
Pet: a cat (Buttercup)
Prefers showers to baths
Dream Vacation: A safari in Africa
Favorite Store: American Girls Store
Favorite Toy: My Little Pony amusement park set
Favorite Amusement Park: Cedar Point

Writing by Christi completed at school:

Dear Pen Pal,

            Hello, my name is Christi Thomas.  In my family I have four people:  my mom, my dad, me and my sister, Shayla.  I also have a cat named Buttercup.  My sister has a rabbit named Hamster.  I love animals so when I grow up I’m going to be a veterinarian and have a dog, two cats and a horse.

                                                                                                                        Love, Christi

A Poem about Christi by Christi:

friendly, funny
playing, dancing,
growing like a deer in a meadow
animal lover