Journal Entry

Tuesday night, February 24, 2004

"All I have seen teaches me to trust the
Creator for all I have not seen."

-Ralph Waldo Emerson

This shall be my shortest journal entry yet. I'm happy to report that I say I'm "too blessed to be stressed" yet I'm truly too stressed to have time to sit and collect my thoughts this week. Since Shayne is only working part time and since his Father recently retired and has had some health problems, Shayne went down with his high school friend and college roommate (Tom) to spend time catching up with his Dad; therefore, I've been playing "Single Mom" and I shall continue to marvel at single Moms everywhere as I long for Shayne to return home tomorrow. I've decided that while I occasionally joke about Shayne being "my first husband" "my high school sweetheart" "the banker I sleep with" I also award him additional titles of: "World's Best Friend!", "World's Greatest Husband!" and "World's Greatest Dad!". I am soooooooo blessed!! Thank you, dear Lord! I don't deserve this wonderful man! And now that I've received a prescription from an oncologist that actually says, "per request of the parents" I think he may be awarded an "M.D." title soon too! (hee hee!)

I'd like to thank all of my family and friends for getting Christi and Shayla where they need to be and for providing child care. THANK YOU!!!!! I don't want to list anyone for fear of overlooking someone, so I won't go there nor will I bore everyone with the little things I think are humorous or memorable about the week, like Shayla explaining to me why she has to walk down the hall at school like she does - "because my feet are like magnets attracted only to the dark brown squares". So, I shall jump right on to the Medical Scoopage:

Christi's blood counts were checked on Thursday, February 19th. white count: 4.1 (fell - but not too much. Normal 5-15) Hgb. 10.3 (fell - ugh.) This one concerns us and has ALL confused as to why this is happening; however, it is falling again very, very gradually so I do have to believe that she is slowly recovering - maybe. (Post MIBG 15 weeks!) I have to remind myself that she was only the third kid in the US to ever do the MIBG attempt she endured. I think she's going to need a blood transfusion possibly next week. I knew she was so cold on Saturday night when I read to her and she kept pushing her body against mine and asking me to snuggle closer. When we were in church on Sunday and it was time to share peace, I shook her hand and immediately turned to my Mom to say, "Someone is going to need blood soon. Shake Christi's hand. She's freezing!" Her platelets up to 122! Ah, you prayer warriors rock! (Normal 150-400. She's nearly there! Yahoo!) She had an ANC of 2,900 (also fallen, but well about the dangerous 500 number).

On Monday she started this second round of the high dose CRA drugs. She takes six pills per day. So far there are only signs of pink rosy cheeks, but no signs of skin chapping and peeling, nor leg pain - but I'm positive that will occur within days. An adult friend recently said that she takes the same drug, but she takes just 40 mg and notices side effects so with Christi's little body taking 150 mgs no wonder she experienced the side effects she did the first time. We pray that the medicine is not just maturing the neuroblastoma cells, but knocking them out forever. Only God knows!

Our prayer requests are for our many cancer fighting friends who are not doing very well right now. There seems to be more and more each week. These are the folks that have been dear friends who really know what it's like to live this fear we live in every day. It breaks our heart to hear how bad their children are suffering. This disease is wicked enough, but to have these children lose their dignity while enduring a painful dying process, slowly making their way to their eternal home, is senseless. May God bless them and give them comfort and strength.

New in Christi's Clubhouse is a beautiful gal named Erin who is also fighting NB stage IV and treating at Duke. Her Aunt is her Webmaster and what is really "interesting" is that she had stumbled upon Christi's web site long ago and had been following Christi's battle. What a shock to learn in December that her own little beautiful niece has the same devil thriving inside her body. God works in mysterious ways! Best wishes sweet, beautiful, Erin!!!! May you kick this beast and live a long, healthy and happy life! God bless you! Visit Erin's site. Thanks, friends!

Hugs, Angela

Christi's Joke: Do millionaires ever get flat tires? No, because they have "air" in them!

What's Next: I will take her to the hospital on Thursday morning to have vials of blood drawn. I'm hoping her white count and Hgb. start moving up somehow. She shall continue with these CRA drugs for 12 more days. (They do not lower her blood counts.) We have already started to pray that we hear "clean bone marrow" and "NED" for the first time in 19 months when we go to Philadelphia for her scans sometime in March, yet we're realistic to know not to get our hopes up and to just be thankful that she's currently pain free. We've been blessed! Thank you everyone!