Journal Entry

Monday night, November 10, 2003

BY Linda Nielsen

Cancer is such a scary word
No matter how it's spoken.
Peace of mind taken for granted,
Can be crushed and forever broken.
But together we could fight this!

It’s an enemy from within us,
Stinking oh so randomly,
Tomorrow it could be you,
For yesterday it was me.
So together we should fight this!

While science is advancing,
My heroes still are dying,
Some treatments just aren't working,
But still we keep on trying
And together we will fight this!

Research is the magic word,
It's what we want to see,
Nothing less than a cancer cure,
Would mean so much to me.
For together we have fought this!

I'll take support from everyone,
To really see this through,
So peace of mind for all of us
Can start off fresh and new.
And together we will win!!!

The "bonus time" at home was fabulous even if only for a few days! Christi was happy to attend school on Friday being back with her wonderful teacher and terrific second grade classmates. I was happy to see her bring home her very first grade card. Of course it was nice to see all As, but what was thrilling beyond belief was this was the very first time she ever brought home a grade card; I never thought this would really happen at all. Thank you, Lord!

I think her ballet teacher on Friday was surprised to see her as she said to me after class, "Now when are you leaving?" I told her we already left, had treatment and are back, but we'll be gone again on Monday so Christi probably won't be back until January; however, Shayla will be coming with my teacher friend Caroline to class sometimes, maybe. Oh, I'm sure she thinks I'm crazy now!!! This entire ordeal has been "crazy"! We really don't know if we're coming or going.

We enjoyed a nice, quiet weekend in our own home. Ahhhhhhhhhh!!!!! It was fabulous to be surrounded by our own things and lots of space. One night after reading and saying our prayers, Christi said something like "My class is learning a new song for the Christmas program. Will I be here so I can be in the Christmas program? I think it's December 8th." I told her that the Christmas program was probably going to be at a time when she would have very low blood counts and would probably be in isolation wherever we were, but that she could sing the class Christmas song for Daddy and I as I was sure Mrs. H. would even let us borrow the music. Tears slid out of her eyes as she rolled over and mumbled something like that won't be the same. I told her that next year, when she is in the third grade, she will most likely get to be in her very first school Christmas program and that will be very, very special as I fought back tears of my own. Christi always loved dressing up and going to watch my kindergarten students in the Christmas program each year. And when she was four she had memorized all of the words from me singing the songs around the house. She was all dressed up to go watch the program and she wasn't sure why she wasn't allowed up on the stage to sing too.

This entry finds us back in Philadelphia and all checked in. Shayne, as always, did a tremendous job with the drive. We left our home at 2:30 AM and arrived here around lunch. The "Birth of a Nation" (Philadelphia) was founded in 1682 by William Penn, an English Quaker. King Charles II granted William Penn land. For Penn, this was the beginning of a new colony based on religious freedom. Philadelphia's history from 1774 to 1800 is linked to the American Revolution and the birth of a young nation. Here patriots declared their independence in 1776. Philly served as the fledgling nation's capital from 1790 to 1800. Of course, the rest is history and of course this teacher really misses trying to instill great bits of information like this with her students, but I'll quit trying to teach here too and move on. (Smile) (Teachers who love teaching, teach others to love learning!!!)

Anyway, today we went to the Academy of Natural Sciences (dinosaur museum) and really enjoyed our time there. Christi and Shayla have been getting along like the best of friends. (Another miracle in progress! hee hee!) We also drove past the Liberty Bell and Independence Hall. Because Shayla is a huge PBS Kids' "Liberty Kids" TV show fan she was particularly fascinated with all of that. We also went to Penn's Landing where the children enjoyed checking out the ships from long ago. Christi has now been out of school for nearly three weeks, but she's still learning and continuing to pose great questions.

Shayne and I are exhausted from the drive. Even though I tried to sleep while Shayne drove, I'm still tired. In the morning, we will head off to CHOP (the hospital) to start her testing process beginning at 8:30 AM. Shayla and I were planning to stay back; however, Christi wants to show her little sister her new hospital so we'll all go over to CHOP.

So many of my journal entries contain sad news about Christi and about our dear friends. Therefore, I finally want to share a teenager's web site with you that will hopefully leave you upbeat and hopeful. This great kid is my hero, my hope and my inspiration!!! Nick Snow was diagnosed with neuroblastoma in December of 1995. Like Christi, he had refractory, persistent disease. He has, like Christi, continually been in treatment. In March of 2003 he was finally declared NED! PRAISE BE TO GOD!!!!!!!!! I won't say that he's not been through the mill, that he's not missing a lot of parts, doesn't have a lot of damage, and won't relapse, but I can tell you for the very first time in his life he is playing basketball and he gives me a ton of hope!!! He's definitely the exception to the rule with this disease and I pray that Christi and all of our other little fighting friends will somehow follow in Nick's footsteps. His awesome Mom is one heck of a child advocate and has earned more than an armchair degree in pediatric oncology for all she has done to literally save her wonderful adopted son's life!!! Nick is truly a pioneer - participating in countless Phase I and Phase II clinical trials over the years - often being the very first and helping other children after him as a result. God bless you Shannon and Nick!!!!! We love you and are so proud of you!! Visit Nick's website.

Well, Christi fans, thanks for checking in with us! We hope you and yours are doing well!! Please keep the prayers coming that this radiation is still in Christi's bone marrow destroying each and every teeny tiny cell (even though it's not supossed to be that effective on individual cells, we can always hope and pray!).

All my love,

Christi's Joke: What does the kitten call her Mommy? (Meowmy!)

What's Next? The big event will be her second high dose MIBG infusion scheduled for Tuesday, November 18th. She'll be hospitalized on Monday, the 17th. Shayla will be driven home by my Aunt Marty and will then stay with my dear friend Becky while Christi is radioactive. Our prayer request remains that this treatment forever rids Christi's body of all the remaining cancer and yet not be too toxic. (This is where the experimental study really kicks in - going for the second high dose treatment in rapid succession. Oh my! Like once wasn't enough!) I'm anxious to see what her blood counts will be tomorrow, but I don't expect any dramatic changes. Her blood counts are expected to bottom out after Thanksgiving. She will be given back her stem cells on December 2nd. It's going to be getting pretty rough very soon, but right now she's pain free and we couldn't be any more happy about that! Thanks, friends!!