Journal Entry

Monday, October 31, 2005

"Don't fear death, fear only the unlived life."

(from Tuck Everlasting – the movie)

Baby Christi! (photo taken October 1997, 5 months old)

Oh, how I wish we could just put her in a pumpkin shell and keep her very well!  If only it were that easy!  The “million dollar kid” requires a wee bit more effort, but we think she’s worth it all! 

Today ended the two weeks of chemo.  Whew!  It was all I could do to even wake up the peaceful sleeping child each morning to get it started knowing the hell that would soon be endured.  Before waking her up, I’d sit beside her and gaze upon the beautiful resting child all curled up with “Blue Bear” and I’d pray to the Lord to make the chemo go easy.  (OK, ok, and I’d beg too!  Smile.) Frankly, I hated having to wake her up.  Some mornings she’d start getting sick just upon waking up and dreading what was next. 

Her ability to somehow convince herself to walk downstairs to start drinking the vile liquid despite her gagging is amazing.  The gurgling and churning that can actually be heard outside of her stomach during this process is wild.  (I’m trying to sit with her nonchalantly, yet inside my heart is breaking, my stomach is weak and my prayers are constant as she endures the harsh medicines all the while trying not to vomit.)  I doubt if anyone at school even realizes what actually takes place in our home very early each morning before we start our drive to school, but when I walk in some days I smile and think to myself, “I can’t believe with the stress, mess and hassle that we made it!  Yahoo!”  This week off break will be enjoyed and savored! Although her blood counts don’t really tell us anything about her cancer, they were excellent last week - all normal blood counts.  Thank you, dear Lord!  "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." (I Thessalonians 5:16-18)

11.7 Hgb.

5.6 white

169 platelets

3,100 ANC

Her LDH level was 210.  This is a marker which measures the tumor cell activity.  Normal is 100-190; however, it’s down from the 330 it was in August when the disease had spread throughout her skeletal system and it’s down from the middle of September when it was 225.  While I don’t want to make predictions (and I know how quickly things can change with “this beast”) it would be my guess that’s she’s probably in the same ship now that she was sailing in upon her last trip to CHOP at the end of September.  (Disease in the rib and in the bone marrow, but not extensive.) 

We know that this chemo combo won’t hold her long and we’re considering it as a “bridge” to her next treatment attempt. The trial we’re eyeing still isn’t open yet, but we’re hopeful that this chemo “may” hold her until she can get enrolled in that study.  We don’t know what city will get it open first, but we will somehow get Christi and one of us to that hospital - wherever she needs to be for it.  We’ve been waiting since the fall of 2003 for this specific trial and it appears that finally it’s close to being approved.  Meanwhile, our prayers continue!

Goal for Fred’s Team:  To raise $3.5 million for pediatric cancer research at MSKCC!  To the incredibly kind and generous donors who loving raised $3,500 for Shayne to run, we say THANK YOU!!! I’m so pleased to report that his continuation with his training program in preparation of the NYC marathon is going very well.  His 8 mile and 10 mile runs were this week.  One knee is bothering him a bit, but other than that I still think he’s really going to make it!  Praise God!  Here’s a funny email I noticed he sent to a friend:

I am really excelling at this portion of the training program.

1.)  Get plenty of rest. 

2.)  Eat lots of carbs.  (No one is going to out train me these last two weeks!!)


And to Jeff and Marty who are driving him (and Shayla) to NYC:

Here is the scoop on NY:  I had to buy a ticket for a bus that leaves from Midtown...between 5 am and 7 am .  Race starts at 10am .  It is basically the only way over to Staten Island that day.  Your sweats that you wear to the start line are shed in big piles and then donated to the NY homeless.  Anything that you want at the finish line is stowed in a small clear plastic bag and hauled in moving vans.  It is supposedly sorted by bib number.  I have not figured out what I want in my little plastic bag - maybe just pain relievers! Also, I do not have work out clothes that even the homeless would want so my stuff may just go in the dumpster.  Shayla and her NYC friend Veronica will watch the race in Brooklyn which should be about mile 8 to try to see me run.  (2 million spectators, 36,000 runners – hope we catch each other!)

Here’s another email he sent to a fellow NB Dad:

…………. About the is our way of thinking.  It (the rib) is a good indicator of what is going on systemically with Christi's disease.  It happens to be a focal point for the disease, but really represents what is going on in each and every marrow space in her body.  We have never had clean marrow in the past three years.  I suspect that if the rib cleared (or was removed) she would continue to have disease in her marrow - we would just have to go look for it harder.

With that said, it has not been ruled out that this spot is "seeding" the rest of the body and is where the ABT resistant mutant originated from....I get frustrated with the science here!  The oncology world really does not know if stage iv NB metastasizes or if it presents as systemic so they are not willing to rule out the fact that the “hot spot” may be the new primary tumor of sorts.

On the fun side...we again finished “Sideways Stories from Wayside School ” and are about half way through #2.  I find that reading the humorous stories at about the fourth grade reading level is what I do best.  Somehow the girls got us hooked into doing TWO story times before bed each night: Mom then Dad.   Angela just finished reading them “Tuck Everlasting”.  I only caught parts of the book; however, we watched the DVD borrowed from the library tonight.  The great line from the story was "Don't fear death fear only the unlived life,” to which Christi stunned us with her respond by saying, "Wow, he was wiser than I expected."  Someday perhaps that will give me peace. Strength to you my hospital food eating, baby raising, double transplanting, extreme parenting friend,


The loss of dear Michael Romano has been profound.  When I learned of how he “went out in style” I literally wept, yet I also found it to be so sweet and so touching.  The baseball playing - huge Yankees fan, Michael was buried wearing a NY Yankees uniform sent by the team.  Here’s the sweet story:  (link, if possible)

Well, I’m trying to keep this short so I’ll just sum up the week to say that Shayla enjoyed going to the k-3 grandparents’ program at school with her Grandma Nee Nee.  (Thanks to the wonderful Mrs. Rogier!)  They loved going to Sherri’s and to Mrs. Smith’s after school last week.  The little girls’ cheer camp at Heidelberg College was great fun as was the Girl Scout Halloween party Saturday night.  Saturday night also found us out toilet papering the Bowerman’s and attending a comedy show at the Ritz.  Sunday’s piano recital was lovely with both Shayla and Christi performing their pieces for the audience and for their Grandparents – all beaming with pride, naturally.  Tonight’s trick or treating will again be with “Grandma” Donna and the gang so that will certainly be a treasured event.  (Mom - Can you believe the “black cat” costume you made for me sooooooooooo many years ago is AGAIN being worn?!!  Christi just loves being “a cat”; I’m sure I did too.) 

Thanks for checking in!  My next update should be an exciting one containing her test/scan results and the news of Shayne’s participation in the NYC Marathon.  I estimate it to be posted about Nov. 11th so until then – don’t worry, please pray for good, stable scan results and a healthy husband to return home from NYC.  Here’s wishing you peace and good health!  THANK YOU, dear Christi Crew!!

Until then,

Christi’s joke:  Why did the vampire get fired from the Blood Bank?  (He was drinking on the job.)

What’s next? Shayne is “Running with Fred’s Team” in the NYC Marathon – Nov. 6th and test/scans coming up soon.

LATE BREAKING NEWS:  Thanks to one of my awesome Professors at Ohio State, there will be an "Alex & Christi's Lemonade Stand" this coming Saturday before the Ohio State game.  Amazing, eh??!!  So, if you are planning to attend the game to watch the Buckeyes play please consider stopping by the lemonade stand outside of Ramseyer Hall on Saturday, November 5th.  Dr. Gartner and her students will be setting up at 11:30 AM and manning the stand until game time.  I will also be in attendance.  Thank you, dear Vicki and gooooooooooooooo, Buckeyes!!