Journal Entry


Saturday, December 21, 2002

Hello all! I hope this finds you well and nearly completed with your Christmas preparations. It's hard to believe that all of that is going on out there as we're so "out of it" this year. We arrived home from the hospital late on Monday. We brought Buttercup home from her hospital stay in Columbus too. (Shayne jokes that OSU wasn't getting a big enough piece of him - they had to take his daughter's cat ($1,000) for treatment too! OSU and Children's Hospital have a partnership of some sort we haven't figured out yet. Next perhaps they'll have us pre-pay the girls' college tuitions. (smile) I just hope to get there one day! It's great to have Buttercup back and her pathology stated that it was only a mass and was not cancer as previously suggested to us. So, she will be just fine!! Praise the Lord! We need this cat!

We arrived home to see that the outside of our home had been REALLY decorated for Christmas!!! So funny as we don't put any outside lights up. (The one year we tried, it looked like a trashy bar so we took them down!) These decorations are just gorgeous! I think we've narrowed the culprits down. As we drove down our road, Shayne said, "They must have had a tall ladder, or access to flying reindeer!" I said, "Yes!! They didn't miss a bush!" They didn't! It's decked to the hilt! Once again, some dear friends we are unworthy of having spent two extremely cold, dark nights out in our front yard arranging all of these expensive lights. Unbelievable!! I bet it looked like the Chevy Chase Christmas movie out there!

Christi had a good week. I took my Mother along for her hospital trip on Thursday knowing that she'd need another lengthy blood transfusion, but she did not. Mom really misses her since we're in isolation and they painted ceramics together at the clinic. We were thrilled to all come home early and not to need blood or platelets. They told me she's on the downswing so I should expect a transfusion on Monday when we return. Mom, like others, has offered to accompany me many times, but with all she and everyone else is doing for us I hate to ask her or anyone else to do this too. I had a really rough night Wednesday and just missed Mom so bad so I called her and asked if I could pick her up in 30 minutes and she dropped everything to come along. (Thanks, Mom!)

Shayla has been very naughty lately. (biting, hitting, yelling at me) This is not my darling little girl. Didn't I just complete her preschool papers and I typed in, "Very pleasant, so sweet. You will love this child!" This is not like her at all; this must be so hard on her too. I sometimes break down and cry and know I must not as that scares the girls terribly, but it just happens. I've started waking up in the middle of the night vomiting this week. I know it's just stress, but it's almost like my body just takes over and I'm out of it. I can't seem to sleep. I just wish I had a button on my arm to push and make me fall asleep and stay asleep instead of wrestling with worry. I try to turn it up to God, but it's not easy to accept this and to rest.

Shayne sent the computer out for "data recovery". We hated to spend the money; however, we had everything on my laptop. (Lesson plans, NWOEA stuff, cheerleading stuff, cute sayings of the girls, stories they've "written", Christi's medical records, etc.) What was really important to us though was the 3,250 emails stored on it. Right after Christi was diagnosed we received some of the most kind and thoughtful emails imaginable. (163 I never even had the time to open and read.) Wanting to one day have time to really read those emails and not just quickly scan them like we did, was what made us bite the bullet and try to get the data saved. We should know soon if they were successful or not. Please learn from my lesson and back up your computer often. Also, please send me an email if you haven't so that I have your address. Many of our friends have, but I hardly have any email address from my family and I'd like to be able to quickly contact them if needed. THANKS FOR SENDING ME YOUR EMAIL ADDRESSES!! (hugs)

I ran out Tuesday morning to Wal-Mart to buy a mini-trampoline (rebounder) for Christi. We've heard that jumping stimulates the lympathic system. The lympathetic system removes toxins (like toxic chemotherapy) from the body. She thoroughly enjoyed bouncing on the one at the hospital. One was suggested to Shayne for $245.00, but I found one at Walmart for less than $20.00. It doesn't contain the video, but I'm positive that Christi should be making her own exercise video as she's developed some unique ways to bounce on it. I cannot believe that this thing is in the middle of my living room, but hey, I can't believe a lot of things anymore!! If this may help her and will keep her strong and fighting, why not?! Shayne keeps joking, "Every Thomas Team member must jump there for 20 minutes daily." I'd really love to if time permitted. I miss working out and I know Shayne does too. He was at his peak level of fitness when Christi was diagnosed. He and Christi's Uncle Jeffy were going to Zanesville to compete in an adventure race together. (A seven-eight hour competition. Fun fun!) The girls and Aunt Marty and I were going to go watch them and go shopping while they were canoeing, jogging, etc. That didn't happen because of Christi's diagnosis, but I'm glad he was so strong going into this newest fight. It could only have helped him and therefore all of us.

Things continue to look dismal at best here. This week Shayne has been on the phone with four big oncologists around the country. (Boy does he have guts to read a research article they suggest and then call the big wig for more info!! I'm so proud of him. I don't know how he does it and I pray that he won't collapse soon. He spends countless hours doing everything possible to save our Christi's life. He makes her smoothies, buys all her organic food, researches everything possibly imaginable, does her aromatherapy, gives awesome foot massages and then continues to seek out and make connections to get more information for us about this beast.) Christi's problem is her bone marrow isn't clearing. We've learned that unless we drastically change her protocol and try some new things she has about a zero chance of living. We have made plans and will proceed on them. Like any mother, I'd walk to the end of the world for my kids so what we have in store will actually be a bit closer than that. It has not been an easy decision and we're asking for help from above to continue to guide us in doing what is best.

The last round at the hospital I read her pathology and discovered that when Christi was diagnosed her bone marrow was infiltrated to 95% cancerous cells in her bone marrow, not 80% like I had thought. (I'm not sure where I got that and I apologize for giving out inaccurate information here!!) When Shayne told someone he's been talking with on the east coast that her marrow was originally at 95%, the expert asked, "How did she not suffocate?!" We praise God she didn't and that she's still fighting! She continues to act and feel well. We know that the chemo has lost it's punch and it's now going to have to get real ugly to get it out of her. This bone marrow issue not clearing is huge! Her oncologist told me that her tumor shrunk by 70-80%; however, the problem is the bone marrow still containing a large amount of cancerous cells (10%). They should be down to microscopic amounts by now.

We're not naive enough to believe that she'll walk away from this disease unscathed; however, we're hoping she can walk away with minimal damage and live here in our home, until after a fulfilling life when it's time for her to live in her eternal home. God, I know you need children playing in your gardens, but I do not believe she's lived a full life. While she's done more in her five years than many people will ever do, I can't believe it is your will to take her home so soon. We continue to pray for guidance from above on making the right decisions.

A teacher friend emailed me with this which really sums up how we feel. I hope she doesn't mind me sharing this. She wrote: I hope everyone has a blessed Christmas!!! What an awesome Christmas to reflect on what you have, Christi. When you think about the 95% Cancer cells and that she really shouldn't be here it is awesome!!!! You are so blessed with friends, treasures, the knowledge that the world rally cares you are not alone in this world, the gifts, prayers, people from around the world are putting Christi's name on their lips in prayer and hope, the memories you have helped to create for others, the memories you are creating for yourselves, the money given, how you have been giving to others, answered prayers, the tightness of a family getting closer, how people who don't even know you are giving, the Aztec used for transportation, and so much more. Where do I stop?

I wasn't going to do a journal entry this week. Instead I was going to put in some emails that Shayne has sent to his friends, but it appears that I can't quit typing. (sorry!) I'll stop now and put in a few thoughts from Shayne. He's incredible and a far superior writer than I!!

God bless you!
Angela (a.k.a. Christi's mom)

Christi's recent joke:
Coming home from the hospital Thursday she said to my Mom and I, "Are peanuts fattening." We're pushing protein so I said, "No, they're healthy." She said, "Then why haven't you ever seen a skinny elephant!"

Pieces of Shayne's Emails to Friends:
(Shayne rarely emails so these are pretty special I believe.)

We are home!!! Not unloaded yet but home. My first order of business after reading and coloring with Christi until 11:30PM was to attempt to get Angela's email up and running. She gets kind of ugly when we have tech problems.

Leave it to Irv to get in trouble visiting someone in the hospital delivering fruit. Security isn't that tight coming across the border from TIJUANA. We got lots of laughs about the fruit contraband though.

Christi was star struck by the little Christmas wonderland here at the house when we got home. Blockwatch says that it was many vehicles in the drive. I figure it had to be someone with access to ladders or flying reindeer to be able to reach the gables of the house. Vast experience in electrical engineering was required to develop the circuit to run that festival of lights and it took a brave soul to go into my garage to plug it all in.........

Well the laptop is toast. I am taking it to shop tomorrow for data recovery. We will see. The sad thing is the lost emails. I was looking forward to some day sitting down and rereading all of the kind heartfelt words people had sent us. That has kept me from attempting a system restore

We are home. Christi is well. She lost ten percent of her body weight this round even though we had a complete deli in our room. She ate very well tonight when she got home. It was like one of those college binges at Denny's after an all nighter.

Some friends decorated our house for Christmas. Unbelievable. Giant inflatable snowmen, large lighted candy canes, and lights on the second story eves. My home looks like the national lampoon's Christmas vacation house with ten thousand tiny twinkle lights. All I need is for the cat to bite the extension cord and my brother in law to come over in an RV and I will be set to receive my jelly of the month and have the haphapiest Christmas.

Hope all is well with you. Thanks for all you do.
Clark Griswald

I just had a moment here. In the hustle of unloading I vaguely remembered Christi was tearing open Christmas cards and I saw that we got a card from the Cooks. After sending your email I thought to go look for it. Thank you very much for making us a part of your Christmas letter.

As I finished reading the letter a spontaneous smile appeared on my face. It dawned on me that deep long lasting friendships are forged in times of adversity and I wanted to thank you for being our friends. As I was glowing in this moment I heard Christi coming down the hall. " Dad I want to talk to you about a few things....Buttercup is snoring really loud in my bed....it is taking you too long to fix mom's computer...and I need you to carry these bears upstairs so lets go"

I have a daughter who loves me and is a true friend. This is a whole lot more than most of the rest of the world has...so I am thankful.

Merry Christmas
Shayne

And Shayne's email to a listserve for Neuroblastoma that 300 families participate in. (Be sure to read the bottom. It just cracked me up as everyone signs off the bottom with their connections with NB and Shayne listed his in his own unique way)

After the second and third round of treatment on 3891 Christi's bone marrow has remained positive at around 10%. Her tumor is responding very well, but we are not able to whip that last 10 in the bone marrow. We just completed round 4 and are scheduled to do marrow aspirations in a couple of weeks. If it is not cleared we need to change something. Our onc is leaning toward Cytoxin/Topitican. It appears our other options are MIBG, high dose chemo like current study, or 13 cis retnoic acid. (spoke with MSKCC today they say no to monoclonal antibodies until completion of at least two rounds of high dose). Does anybody want to weigh in on this subject? Has anybody been here? Shayne father to Shayla 3 going on 30, husband to Angela, father to Christi DX 9/11/02, thoracic primary metastic to marrow, treatment at Columbus Ohio Children's Hosp. completed 4 rounds chemo and looks and feels great. Christi is the mother to Buttercup a six month old kitten.

[Top]