Journal Entry

Saturday, September 28, 2002

sub: First Blood Transfusion a HUGE success!!!! Go, Christi!

Dear family, friends and kind folks I do not even know,

Hello! I hope this finds you well and enjoying the beautiful weather outside! This will probably be my last email to you all. I do not want to burden anyone who does not wish to receive them, nor do I want to hurt anyone's feelings by overlooking someone. (And boy are they lengthy!) Therefore, for the rest of this war I will be submitting "journal" entries and updating the news and pictures on Christi's web site instead. A friend has graciously agreed to create and maintain it. (Thanks, Eric!) The site is: and it should be completely ready for viewing early this week. (Remember her name is spelled a bit differently. I've always told people...........It's like Christ with an i.) I've also always told people that she's a precious gift from God that he can take back at any time, but I didn't really think he was listening!! hee hee (laughing) Now I know; God is ALWAYS listening. (Keep those prayers going!!)

Christi was discharged last Monday. We've been so glad to be at home since then. While things don't exactly seem normal it's GREAT to be here. On Thursday (Sept. 26th) Christi had her first scheduled trip back to Children's Hospital. We just got Shayla, back on Wednesday and here we were Thursday morning dropping her off before the sun was up. She literally clung to me like Velcro. With huge tears in her eyes and mine I finally convinced her that we wouldn't be at the hospital so long this time and that we'd be back home to play with her soon. The books I've been reading tell me that her life has been shattered too - even though she's just 3 1/2 years old, she knows something huge has happened and her life is being altered as a result.

Even though we thought Christi looked pale and had been weak we were surprised that they needed to give her a blood transfusion when we arrived. During that time, I kept looking up at the bag and seeing the "Volunteer Donor" sticker on it. Even though I've yet to let Christi's see me cry, that sticker kept bringing tears to my eyes knowing that some incredibly kind person took the time from their busy life to donate blood to help save my child's life and they don't even know her and I can't even send a thank you note to this compassionate, anonymous individual. What a beautiful world we live in! The transfusion really seemed to make a difference as she's been more like herself since she's received it. It was a long, exhausting 13 hour day, but we were glad they sent us home that night. And Shayla did fine we were told.

BLOOD DONATIONS: So many of you have been so kindhearted to ask about donating blood for Christi. Because she will need it so often (about one blood and or platelet transfusion per week) there is no way to schedule it, so we will be using the general population's supply. We were also informed by the hospital that if people donate in Christ's name we will be charged for it (whether she uses it or not) because of the extra handling involved in keeping it separate for her. Our insurance has a max which she will probably hit; therefore, our message to you is that we encourage you to give blood, but not to specify it for Christi. She's certainly contributing to depleting the nation's supply and a needy individual just like Christi will benefit from your donations if you are so inclined to do so. I am sure another mother will be just as appreciative as I am. The kids at Children's Hospital in Columbus last week used 256 units alone.

After her transfusion, they told us not to be surprised if we get home and she has a fever and we have to turn right around and head back. We repacked our bags (Thanks, Shayne's Mom for taking care of all of the weeks of laundry! What a sweetie!) and waited for the fever. Well, Christi's a remarkable kid, it never set in!!! They also told us to expect to be back and to be admitted sometime over the weekend. Well, I feel so very blessed to inform you that that hasn't yet happened either!! We're still here. She's tired, but doing fine and hopefully we'll make it until Monday. On Monday she will receive another blood and probably platelet transfusion as well. So that's where we're at with Christi's big battle! Thank you for your concern!

While I will not be emailing you again, PLEASE, PLEASE, PLEASE continue to pray for Christi. I've been told over and over that God's in charge, but you know me - I'd like to give him as much direction and to attempt to remain in control as much as possible. You've also told me that God doesn't' give us more than we can handle, but did he really get the right person?! I'm not so sure!

If there was any doubt in my mind about this fine community pulling for Christi, it left when I had to run some errands on Friday. I dreaded going out and seeing people because of the emotional toll it takes on me; however, there were a few things that I simply had to get. Everyone seemed to know and everyone was so kind in their words and actions. The Bath and Body Works store, where I went to get some nice smelling hand sanitizers, was the most difficult. A.k.a. "the lotion store" is Christi's favorite store. She always asks me how many testers she's allowed to sample and really gets into it. I'm sure the clerk thought I was nuts, but it was hard to be there without Christi and her sampling of the products.

We also firmly believe that we couldn't work for finer employers! (AND we would have said that before all of this, but now we definitely know they're even finer than we thought) We're extremely grateful and thankful to the Old Fort Bank and to the Seneca East Schools. I plan to add their web sites to Christi's page when time permits.

The nurses also told us that her Broviac (central line inserted inside her) is infected. Now I could understand this if I would have had time to mess something up, but it's all sealed up and taped on top of her chest. I didn't even have a chance to make a mistake yet. They explained that her immune system is absolutely shot. She cannot fight off anything and her blood isn't clotting like it should.

Her next round of chemo will have a 15% chance that she will be deaf. I've been teaching her some sign language things and we will be learning about Helen Keller this week, just in case. I want her to be able to put things into perspective. (Thanks, Lisa and Diane / Heidelberg College for sharing your materials!) Christi loves learning!

Christi is eating again, but now the girls weigh the same amount. I contribute this to Christi being sick and not eating and Shayla spending two weeks eating at Grandma's! (Don't tell Christi - she's extremely competitive and always has to be the best, the most, the top, whatever, at everything she does, but it's wild that they weigh the same.) Christi has been put on a high protein, high calorie diet. It's really hard to butter her bread before making a sandwich, frying foods, adding sugar to fruits and cereals, etc. because she's such a healthy eater. I know her body is fighting hard because of the chemo, but it's still hard to do all of the things we'd never let her do before. The first day in the hospital they brought her Fruit Loops. She looked up at the woman and said, "I'm not allowed to eat sugar cereals." I told her the rules have all changed and now she can eat anything she wants to!

I still keep asking, "Why? why? why?". This makes absolutely no sense whatsoever to me. I never (and still do not) drank during my pregnancy nor was around any smoking. I took prenatal vitamins (which I've read decrease the risk for neuroblastoma by 35%) and recorded every single food I ate as soon as I knew I was pregnant. I breastfed her for 14 months. She had all of her immunizations up to date, consistent care givers and was a very, very healthy eater. I was never around cleaners / chemicals. (You know how I LOVE to clean and do it so often - hee hee hee!) I actually had a house cleaner during my pregnancy because Shayne didn't want me to be too tired or around anything dangerous.

In June, we flew to Dallas. There were continual flight and plane problems and delays. The girls handled it very well; however, at one point Christi said, "I'm never going to travel again for two years!!!" We finally arrived, with our luggage 28 hours later and I thought everything was fine; however, Christi later reaffirmed her position. I didn't know how true that statement would become!

I want you to know that were are extremely grateful and appreciative of everyone's kindness. I know I won't be able to thank each and every one of you, so please know how wonderful we think you are and how very, very blessed we feel. Also, know how much your email means to me. I haven't been able to respond to you, but I am reading your messages and they bring me great comfort and strength. Thank you!!

Enjoy the week!! I'll be haggling with the insurance company again I assume...............Can you believe they told us we'd have to pay a penalty because we didn't pre certify this with them first?! I handed the phone to Shayne before I flew off the handle. Shayne who is always so polite and professional, explained that we didn't know that this was going to happen and that she was admitted through the emergency room. Oh, my eyes have been opened!

May God bless each and every one of you and keep you safe! Your emails are always welcome! Take care and enjoy the weekend!! See you on the web page when you choose! Thanks!!

bye, bye!