Journal Entry

September 16, 2002

Dear Family and Friends,

Again I say THANK YOU for your prayers, concern and support. Christi is absolutely surrounded by you and your love even though we're two hours from home. You have no idea how grateful we are to each and every one of you. Words cannot express how we feel each time we read an email from you or open a card and see your name. Thank you! People we don't even know are responding with favorable thoughts and prayers for little Christi. You are absolutely amazing!

This afternoon Shayne and I signed the protocol to begin her treatment. This will consist of the most intense chemotherapy possible without taking her life. This means no holding back, all planes in the air. (Some of you have asked the drugs. They are: Cisplatin, Etoposide, Adriamycin and Cyclophosphamide. The side effects with this and the rest of her treatment are HUGE, but we're able to accept all of them in order to have a chance at saving her life.) This protocol continues with these week long treatments followed by a week or two at home and then back here for more. When we are at home, she's not allowed to leave the house, nor go to church, school, restaurants, etc., No visitors are permitted because of the severity of her cancer. She will have surgery once the tumor is shrunk from the chemo to remove the tumor. (It's different than a "normal" tumor. This one is sort of like an octopus with its "tentacles" wrapped around her heart.) The treatment also requires complete whole body radiation, bone marrow transplant and stem cell (something - sorry! maybe regeneration?? This is way out of my knowledge base! I've been learning a lot though!). This intense treatment will be over the next 9-11 months. So that's where we're at. We've been warned that tomorrow will be an absolutely miserable and grueling day for her with the side effects of the chemo. 15 years ago this cancer was 100% fatal; today we now have a 35% shot. Shayne spent part of the day phone calling other cancer Doctors in other cities to gather information, get questions answered from outside of this hospital and to back up our decision we made in the "war room" last night.

Today was the best day she's had since she's been sick. She ate, played, colored, argued with me a few times, read, let me read to her, watched TV, etc. She seemed as perfectly "normal" as this precocious little girl can seem. It was hard not to unplug her and rush her home with her acting so normal and knowing what lies ahead. Ft. Joe drove all the way down from home and was here and did the anointing of the sick and prayed with us tonight. What a comfort! I continue to be amazed at everyone's kindness and generosity. This room is FILLED with your love and we thank you from the bottom of our hearts!

As I sit here and write this, chemo is being pumped into her tiny body. I feel so helpless knowing they are filling her with poison. I wish it were me. She's so tiny, spunky, smart and innocent! They've told us it won't be an uphill, battle but a bloody war. I hope she's prepared to fight and SHE knows of YOU - her soldiers marching behind her. THANK YOU! THANK YOU!!!

She still occasionally asks, "Am I going home today?" and sometimes says, "I wish this were a hotel!" but we think she's grasped the seriousness of the matter. Before her surgery last week, Shayne told her that we had made some decisions for her and then proceeded to tell her about everything that would happen during the surgery. She listened very intently and then asked, "What are my other options?" (Just checking on the old Mom and Dad to make sure they made the right choice. Wouldn't we all do that?! hee hee) Last night he drew her body on the dry erase board and explained her tumor again to her. She joked, "Can you just erase that?!" She still has her great wit and her incredible math ability. Yesterday she was adding and subtracting positive and negative integers and really having the doctors question her age. She also told me that I probably thought it was 1:00, but it's really 12:05. She's a hoot and I hope and pray we can get her cured. Your prayers mean more than you know! Thank you!! Have a peaceful night and kiss and hug your little ones a wee bit closer for me tonight. In the next email will be one of my favorite pictures of Christi.


photo: This is a picture of Christi taken August 23, 2002 with her gifted education teacher. I love it because it shows her beautiful blonde hair. I don't know how she will feel about it falling out, but we've told her that we're all getting new short haircuts so she knows she's not alone in this. Her hair will be gone in less than two weeks. Take away her crayons, she'd really be upset. I'm not sure if her hair matters to her or not. Thank you everyone! May God bless you and keep you safe!