Journal Entry

Saturday, October 26, 2002

I hope this finds you all well!! Everything appears to be fine on this end! We've enjoyed the comforts of home this week. She tolerated her second round of chemo very well - at least Shayne and I think so! She had some nausea and back pain, but nothing like we were ready to experience. So far her biggest challenge is boredom and we're creative enough to handle that one. I'm thankful she's not in so much pain like she was. Praise the Lord! Praise the Lord!! Perhaps it's a sign that the tumor IS responding and IS shrinking. ??? That's our hope (even though the oncologists have told us - not necessarily) and that this protocol will continue as planned. Shrink, tumor, shrink!!!!

On Thursday I took Christi for her bi-weekly check up at the hospital. She ended up needing a blood transfusion which wasn't a surprise to me since that has been the pattern. (An oncologist told us that there are no patterns and every child reacts differently to every round. ugh! I need patterns!! That's how I'm used to living my life - knowing exactly what's going to happen before it occurs! Don't they understand this? hee hee! I know they don't know either.) I really dislike leaving home in the dark and returning home in the dark again, but hey - she didn't have to be admitted and we got to come back home and to enjoy this comfortable, germ-free atmosphere so I'm very, very thankful!! They told me to expect her to get a fever and to be coming back to be admitted sometime this weekend. Last time she made it until Sunday evening so hopefully we can be here for a while anyway. Everything is better when we're at home, especially the bathroom. Christi always says that the hospital potty is "stinky" despite the fact that I have been taking along from home the same exact air freshener, soft toilet paper, the same soft rugs and interesting posters to look at to attempt to simulate a situation to make her more comfortable in there. She's so "funny" about using public rest rooms and the hospital one is definitely in that pile with Christi!!

She continues to make decorations for the trick or treat night she has planned. If you're in the area, please feel free to stop by - young and old alike! We can talk through the windows. I miss you all dearly living in this "bubble". Shayne will be outside passing out stickers, but my friends should not be hugging on him! I know you want to, but he needs to remain germ free - sorry girls!! hee heee! (He let Shayla decorate his head with some stickers the other night - what a hoot!! She loved it and I laughed and laughed.) This night will be with Tiffin's night and that is Thursday, October 31st from 6:30 -9 UNLESS she's in the hospital.

Shayne, Shayla and I all received our required flu shots here in our home. I felt that Christi should be the one to do our injections since she has to get a daily shot from Daddy. That would only be fair and frankly I would have let her! I think she would have done a great job!

Christi continues to feel well for the most part. She's drawing and drawing and coloring and having me read many chapter books to her. We've finished all three of the Ralph Mouse books and Freckle Juice, Wayside Stories, Henry Higgons and the Club House, Socks and now we're in the middle of Beezus and Ramona. Thursday I read over 200 pages to her during her transfusion while she colored pictures for her Grandma Nonee. She's going to put them in a book for her with my Mom's favorite animal (a flamingo) on the top. Her attention span is absolutely amazing for a five year old! Before I thought it was very odd; now I'm incredibly thankful as we have a lot of sitting we simply must do and listening to me read for hours and hours keeps her occupied. When her mind is content we're ALL happy!

We were interviewed via email by the Fostoria Review Times and we think they are putting an article with some photos I emailed in today's paper in case you are interested. (10/26/02)

Christi has put on a considerable amount of weight (11 pounds in four weeks). I thought it was way too much, but they are very happy with her weight gain. She's on steroids to decrease the swelling in her brain and to increase her appetite so that she doesn't have to be put on TPN's and so that she has more to fight this nasty beast with. We are to continue with her high protein, high calorie diet. I've gained two pounds too - oops! I need to remember that I should put in the wastebasket what she does not eat so that it does not land on my waist basket!! hee hee! I'll blame it on my wonderful parents and how they taught my sister and I not to waste things. :-) (smile) Thursday, she amazed me by asking me to leave her four different times during her blood transfusion to go to the cafeteria to buy her some food. She ate two cottage cheese orders, a grilled cheese, a hot dog, pumpkin pie and a slice of pizza. I was also amazed by the prices ($1.21 per cottage cheese side dish and $2.35 for grilled cheese! What is with that?!). She kept putting it away and the nurses said it was wonderful! I ate the cheese crackers and apple sauce I packed for us even though I wanted to ask for a bite of her pumpkin pie! When she says, "I'm hungry." I want to say, "You cannot possibly be hungry!" But I know she is. The nurses said that if she wakes me up in the middle of the night and asks me to prepare a meal for her that I need to do it.

Christi asked Shayne and I if getting cancer was like getting the chicken pox and that you can only get it once. We cringed - knowing that THAT is every cancer survivor's biggest fear. Shayne calmly just said that if it does come back we'll treat it differently next time and left it at that. She seemed fine with that answer. I'm so glad she's little and has no idea of CANCER. Maybe she thinks it's normal as the only other kids she now sees are all bald like her undergoing treatment too.

While we've arrived at acceptance, we still slip back into shock and denial at times and we continue to grieve for her lost childhood. We believe that it could have only been such a nasty, sneaky beast like this to try and bring us down. We're so protective and careful about every detail with our children. In fact we've got to be the only family corny enough to actually act out fire drill scenarios. As I sit here and type I see the large white ribbon wrapped around the truck of our "family meeting spot" tree and think of the many fire drills we've conducted with the girls. How could we have prepared for this devilish dragon?! I don't believe we could have. I'm grateful to have tremendous family, friends and faith. It's getting us through this nightmare every single day!! Thank you!!!!!

Thank you for your prayers! I feel loved and blessed like never before!! You're the best!!! I love and miss you!!!


A Knock Knock Joke from Christi:
Who's there? COLLEEN Colleen who? CALLING ALL CATS!