"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
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
Last weekend the sweet and incredibly generous Leis family treated us to a most amazing indoor waterpark called Kalahari in
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
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
. If you happen to be around
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.
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!
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
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
Christi Thomas Honorary Blood Drive at Hospice: Friday, October 21st . 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).
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.
A Poem about Christi by Christi:
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