Journal Entry

Sunday, September 15, 2002

Hello! Many have emailed us with your concern that you haven't heard any news for a while now so I'm writing to update you. I've just been really exhausted. I'm trying to comprehend everything after being totally shocked that this little girl who had finally gained enough courage to jump off of the diving board without any floaties at the pool on Labor Day now has a 1/3 chance of surviving this nasty dragon. It's been quite draining.

Many of you have asked where we're staying. While so many of my oea "family" have offered us their homes and everything else we cannot imagine leaving this little 5 year and 4 month girl alone. When one of us steps out for a shower or to make a phone call the other is always in her room. I'm sleeping on a couch and Shayne's on an air mattress. We're absolutely fine! Thank you! Our concern is for Christi.

Yes, while we have huge pits in our stomachs and feel continually nauseous we are forcing ourselves to eat something healthy three times a day, to drink lots of water and to keep washing our hands so we can stay strong for Christi as she's truly in for the fight of her life. I haven't left the 5th floor since they transferred her here.

As I type, she surrounded by stuffed animals and is finally sleeping comfortably. She continues to have a great deal of pain. Last night was a horrible night for this little sweetie. When I tried to talk to her about it she said she wasn't scared, but "every time I close my eyes something bad happens" so she made me hold her hand the entire night. I tried to rest my head on one of her stuffed animals, but it wasn't so comfortable. As soon as I'd slip away to the couch she'd wake up and cry that I let go of her hand. She kept saying that I'd sleep better if I shared her pillow or her blanket. At one point she made me get up in her bed and I was soooooooo nervous with all of her wires and incisions so when she said something like, "See! Now you can sleep better!" I had to actually laugh! I think tonight I'm exhausted enough that I should be able to sleep where ever I drop. She continues to be on a continual morphine drip. Yesterday, she was also given the morphine button to push when she feels she needs more. They told us she was the first five year old they ever gave the button too, but thought she could handle it and she's doing absolutely great with it. They want HER to be in control since ultimately she is in control.

She was really wacked out all morning and afternoon and then Cousin Kyle who was here with an unrelated cancer just two years ago came. I told her that Kyle was here and that a short while ago he had a nasty cancer tumor in his tummy and now he's better and home and going to school. She said she wanted to see him. Kyle came in and talked with her and INSTANTLY she was happy and laughing and wanted to go down to the playroom to play. I played old maid with her and she brought back a fisher price Noah's Ark, which she played with in her bed. She ate a bit and then went to sleep. We truly think she thought she was going to die and for the first time Kyle came and it clicked with her that she didn't have to. When she saw Shayne's grandfather in the hospital before he died she was about three and a half years old and we told her he had a sore tummy and I wonder if she's had that back in her mind. His death really bothered her and she would bury her toys and stuffed animals in Rubbermaid plastic bins for a long time after that and said she couldn't play with those animals because they were in heaven. When people ask her why she wants to be a doctor she often says, "Because it's important!! If a doctor doesn't do her job, someone could die!!" so perhaps she's putting things together. And perhaps cancer knew how bright she is and that she'd probably really be a doctor and kick it's _-_-_ so it's trying to kick hers instead! You CAN do it, Christi!!

Tomorrow we'll sit down with the Doctors and determine the protocol. Shayne and I didn't want to put her through the treatment in the beginning if she only had a 35% chance. We didn't want to see her suffer any more. We have now looked at it as though she does have a 1/3 chance and she might as well go down fighting. We'd hate to try to live with ourselves always wondering "what if" if we opted to do nothing, but let her die without treatment. They are telling us that this is the worst possible cancer and she has the worst possible form of it. They're going to need to have aggressive treatment, which may be so much that it kills her. We've been told it will be chemo, radiation and bone marrow transplant.

One of you who deals with lots of little girls in your occupation emailed and told me that she's the "strongest thing you've ever met in a skirt" and I have to actually laugh agree that really is our little Christi. She tends to always fight for what SHE perceives as right. Boy, I wish I could have a big fight with her now about what she is going to wear or what time she is going to bed. Last week when they tried to get her third IV in she was screaming at them, "You stick it in me I'm going to rip it out and stick it in you and see how you like it!!!!" They said that they've NEVER had another child fight them so hard in getting an IV. I hope she continues to fight! Please continue to pray that she doesn't give up hope and that she'll continue to have strength for the upcoming, grueling ordeal she's about to encounter.

Three-year-old Shayla spent the weekend with my sister in Cincinnati. I'm not sure who will have her this week, but we know she'll be in good hands. I think they're going to try to make sure she continues with preschool each Tuesday and Thursday - at least that's our hope that she maintain some sense of normalcy. We've been told not to worry about her having cancer at all. This strikes randomly 1 out of 80,000 per year or 600 cases in the US and 65 in Canada each year. She just had some bad luck sent her way and it's probably been growing in her for a year or two.

Hopefully, tomorrow we won't get news that is any worse. It seems like they just dish out slow, little pieces a bit at a time. We've done as much research as we possibly could over the weekend and we'll see what our meeting tomorrow consists of. This week will be more testing for Christi on Monday-Thursday. They need to determine if it's also spread throughout her soft tissues to put the right plan of attack in place.

Well, this is so much longer than I ever expected it to be. It seems like sitting in the quiet here is just like the time I enjoy so much on my computer after I tuck the girls in their beds at night at home. It's a very comforting way to end the day. I truly hope I didn't get you down. I'm so sorry I have not been able to answer your individual emails and I truly appreciate your words and messages emailed!! Have a GREAT week! It's hard to believe that there is a world out there that is still going on. We have not seen the news for one entire week and it doesn't even seem important from where we are now.

Even though we're miles from home, we feel your love and feel like you're right here in Christi's bed and cheering her on. Thanks for all! Hug your little and big ones tight for us!! We love and miss you! And please keep the prayers going. Christi need you!!


PS: Christi's fabulous teacher, Lisa Rombach, came to visit today. She brought Christi a silk bouquet of yellow flowers because Christi took flowers to her teacher on the first day of school. Following is a second email with a picture of Christi giving her yellow flowers to her teacher on her first day of school - August 21st.

PSS: So sorry if I sent this to someone two times, or left someone off of my haphazardly created list of addresses!! That was never my intent!!