Journal Entry

Tuesday night, December 20, 2005

“Hope fills the afflicted soul with such inward joy and consolation, that it can laugh while tears are in the eye, sigh and sing all in one breath …” (William Gurnall)

Picture just received tonight:  Christi hugging “Flipper”!

Hello, sweet Christi Fans!  Thanks for checking in!  With great excitement, I report WE HAVE A SCHEDULE!!!  So I’ll get to that but first let me back up just a bit.  I promise to write succinctly tonight!

The weekend allowed us the chance to get together to celebrate Christmas with my mom and Joe, my sister and her family, and my Grandma Falter and Aunt Mary.  It was lovely!!  We sang “Happy Birthday to Jesus” before blowing out the cake’s candles and enjoyed watching the children open up their gifts.  As I type mom and Joe are driving to Florida to spend the winter and I’m fighting back tears – so happy Mom’s able to get away from this harsh winter weather, but so saddened by it all too.  (I love living close to her and with things now getting really “tough” it’s just harder.)  Dr. Maris wrote this week:

Dear Thomas Team,

I just want to emphasize that this clinical trial is really a big step up in terms of complexity for Christi compared to everything else we have treated her on--MIBG x 2, ABT, irn/temodar. It will be much more difficult to keep her and your life "normal" while on this attempt. Likelihood of side effects are also much greater, and we will need to monitor her much very closely. We will do our best, but please be prepared for a few curve balls.

Sunday found Shayla with vomiting, fever and diarrhea (second time in two weeks).  So Shayne went to Crestline with just Christi for his side of the family’s Christmas get together.  We also believe that Shayla’s eardrum ruptured on Saturday.  The doctor prescribed an antibiotic and we’ll find out at the hospital on Thursday whether her surgery is still on or not.  We knew she had so much fluid building up it was a matter of time.  She went to school on Monday, but was having terrible ear pain on Monday night and more vomiting.  She wanted to go to school this morning, so she went.

That was not the case with Christi who came down with what her sister had last night.  Shayne and I kept passing each other in the hallway after cleaning up kids – oh what a night!  (Somehow I never imagined this in my “get married and live happily ever after” plan!  Hee hee!)  Thankfully Shayne’s Mom, who is off of work due to breaking her collarbone, answered the phone bright and early this morning and drove down from Port Clinton to stay with Christi and to take her to radiation this afternoon so that I could go to work – I have a mere 12 sick days to my name and while I hated terribly to be away from Christi while she was so sick, I know I’m going to be needing those precious days VERY soon!   Christi hated to miss school – these three days before school have contained many special events for the little ones.  Hopefully, she’ll feel better in the morning – but as of tonight that was still not the case.  (Again second case of “this” in two weeks, ugh!)

So tonight we were thrilled to learn that Christi’s testing schedule in Philadelphia has been set!!  I will fly out with her on December 27th and return home on the 29th.  While this will double our cost of our plane tickets, this will allow me to miss three less days of work by doing it over our Christmas vacation and I really need those precious sick days.  (This is our fourth school year to be fighting cancer and I knew I’d someday find myself in this boat and it looks like it’s about to set sail and I’m hoping not to be sunk!)

If she continues to be eligible based upon her Dec. 27-29th testing results, I’ll fly back out with her on Jan. 8th and she’ll be admitted to the hospital on the 9th for her treatment to begin.  She’s to be hospitalized most likely until that Friday and then will need to stay close by.  If all goes well we’ll fly back home on the 18th of January and return to school on the 19th.  My friend from France ’s daughter did this trial in Vienna and it really knocked the socks off of her poor little princess for two weeks.  I’m hoping it won’t be quite so harsh on Christi, but only time will tell.

So with that I say THANK YOU for your continued love, prayers and help!  Now I’m off to book some airline tickets!! 

With hope,

Christi’s Joke:  Oh, she’s been telling them but if I don’t write them down……….

What’s next?  Radiation continues and the girls are looking forward to Santa’s visit!