Journal Entry

Monday, December 22, 2003

"During our lives we're faced with so many different elements. We experience so many setbacks and fight such a battle with failure, head down in the rain, just trying to stay upright and to have a little hope."

-Lance Armstrong

It is this "hope" that Lance wrote about that continues to keep us going. I finished "It's Not About the Bike" written by this famous cancer survivor and five time winner of the Tour de France during Christi's blood transfusion last Thursday. Christi only wanted to play two games of Scattergories because she had something "important" to do she told me. This "important" thing turned out to be writing her Christmas list for Santa. I sometimes forget she's six - of course that's important!

Her counts were checked at CHOP on Thursday. (Post high dosed MIBG Day #44 & #30) Hgb. 7.9 (transfused), Platelets 32 (oh! not good - transfused just 3 days earlier), white 1.3, ANC 559). She needed a red blood transfusion but first attended "school" with her hospital teacher that day. The "G" shots were overnighted in from Ohio and started on Thursday as I joked, "Can't ya just ship my sister or mom in that package too for the price you're probably charging?!" hee hee Oh, how Christi hates those dreaded shots, but hopefully they'll help to get her blood counts up sooner this way. Everyone at the hospital is very concerned with the fact that her blood counts have been so low for so long. I will admit that Shayne and I are very much concerned as well.

For the most part we kept her out of "school" due to low blood counts and "germs" at the hospital. I saw her "school work" hanging out in the hospital lobby one day and thought, "Children's school work should be hanging outside the classroom, not in a hospital's lobby." Oh, how I hate this awful disease! But nevertheless, this proud Mommy took a picture of it. Christi wrote:

"Dreaming of Christmas"

by Christine S. Thomas (age 6 1/2)

When we woke up, we all ran downstairs and looked under the Christmas tree. Then we quickly opened up our presents. Then we ran to the other Christmas tree and opened up those presents faster than the first. We had a Christmas dinner with turkey, cupcakes with frosting and sprinkles and lots of other foods. Then me and my dad took cans around to collect money for the needy people. We went all over the neighborhood. After that we played with our toys and went to bed.

After a very long day spent at the hospital, complete with many conversations with nurses and doctors and many phone calls back to the Ronald house to consult with Shayne as he and Shayla were spending the day there, we worked it out and made the decision to head for home on Friday. So, Thursday night was a whirlwind spent packing up our belongings to head home for Christi's teacher's wedding and Jesus' birthday. Praise the Lord!! The Ronald folks helped us put items in storage until our return next week and told us, "Good riddance!! We love to send people home in a good way!" (Another baby didn't make it this week and I know it's hard on the staff to send folks back home in those horrible situations. We have been so blessed!)

As we were walking out the fabulous Ronald McDonald House, my girlfriend Becky called to check on us and to warn us that we would hit snow in mid-Pennsylvania. Well, as always, Becky never steers me wrong! We were sailing along just fine and then it was like a switch was turned on and the snow started pelting us. Despite driving through the winter weather advisory, our incredible guardian angels were again with us and safely guided us home - just at a slower pace than we had hoped. We arrived just before midnight. Thankfully, we never slid until we reached our driveway and then slid right past it. (ha! It was hilarious!) Shayne's Mother had our home spotless, hot chili on the stove and lots of hugs (and a box of incredibly fresh and beautiful apples and pears - sent by a prayer warrior from the UK) were awaiting our arrival. Unbelievable!! I told Shayne as I have many, many times, "When I grow up, I want to be a Mother-in-law just like her!!" I found out she even washed a clean basket of laundry that I had sitting upstairs in our bedroom, but never found time to fold it and put it away before we took off for Philadelphia. She's amazing! Love you, Joan!! (AKA Grandma Nee Nee).

During our long drive bound for home, I was so happy! The girls enjoyed listening to me read chapters from "Sideways Stories From Wayside School" as we drove west along the turnpike. It was amazing to be going home for this holy Christmas season as it appeared doubtful just a few days prior. And I continued to think how very, very blessed we have been! Again this year, we will watch both of our children open up their Christmas presents on the morning of Jesus' birthday knowing fully that many of our friends are sadly unable to experience this tremendous, simple joy.

After I kissed Joan hello, I plugged in my laptop to check on little Jake - one of our friends from NYC who's web site is in "Christi's Clubhouse". I fought back tears to tell Shayne, "Jakester didn't make it, honey." Jake and the girls played Pokemon together in our room at Ronald this summer. It's hard to comprehend that just a few short months ago he and Shayla were bouncing on the beds in our Ronald room having a joyous time. Neuroblastoma is so wicked! Our hearts are breaking for his sweet Mom and Dad as they attempt to cope with this, especially with Christmas just around the corner and Jake's birthday coming January 2nd. Who knew when he was born that his life would be so very short. May his family forever keep the Jakester spirit and their memories alive! May God wrap His loving arms around them and give them strength and comfort. "Do not be afraid any longer, just believe." (Mark 5:36)

For the first time since 9/02, Christi had her hair trimmed and styled on Saturday. (Thanks, Cindy!) She was so happy about getting to go to her wonderful teacher's wedding. It was absolutely precious to watch and to listen to those lovely little ones standing in the front of the church singing "Silent Night" while Mrs. H. kneeled in front and directed them. Kristin looked like a princess floating down the aisle to meet her new handsome husband. It was a very special wedding; her father is a Minister so not only did he walk her down the aisle, he but he married her too and did a tremendous job! Very, very cool! Following the ceremony, a wonderful room Mother brought Christi down from the balcony with her class to where I was sitting with the other teachers. Christi had a bouquet of flowers to give to Kristin. I explained to Kristin that we couldn't attend the reception because Christi was supposed to be in isolation, but nothing in the world would have kept us from attending her wedding ceremony. (And of course then I bent the groom's ear telling him to take very good care of Kristin because she is so very special to our family.) Scott told me he would. Congratulations to Mr. & Mrs. Rickel!

It has been FABULOUS to be here in our own home. I can't even describe how wonderful it feels even if we know it's not going to last very long. The girls have been playing with their cats and enjoying their toys and books and all of this space! In less than 24 hours we had the tree up and decorated, the stockings hung, Christmas music played and the nativity sets displayed. (Later I questioned Shayla with, "Why are your little Care Bears in the nativity scene?" and she responded, "They wanted to see baby Jesus too!") I have really enjoyed reading the great Christmas letters that some families included in their cards. I have always just loved them and since this is now the second holy season that we really haven't been able to see our family and friends, these letters and family pictures are even more special. I only hope that next year this web site is long forgotten and I can mail Christmas cards, host parties, and buy presents like we used to such a short time ago.

Saturday night Shayla woke up vomiting in our bed. I gave her a bath, threw the laundry in the washing machine (Ahhhhhhh, no quarters needed here! YES!! I LOVE HOME!) and tucked her in her own bed. I then asked her when her tummy started hurting and she said, "When you put me in the bathtub." So hopefully it was nothing, but perhaps a touch of the flu. We all four had flu shots in October. (Or maybe it was the fact that Shayne took her all over the front and back yards pulling her through the snow on the sled while Christi and I were at Kristin's wedding, but probably not likely.)

Today (Monday) blood counts were checked here in town. (Another incredible blessing as I thought I was going to have to drive her two hours each way down to Columbus.) White 1.7 (That's after FOUR days of the "g" shots. Ouch! Hgb. 9.6, platelets 5 (Oh! No way! Ouch! Ouch!) with an ANC of 800. So as no surprise to anyone, it appears that this double high dose MIBG really beat up her bone marrow. God I hope it destroyed every single cancer cell resting there too!!!!!! Today is week #7 since the first infusion and her counts still remain this low.

Unfortunately, Tiffin is uncomfortable giving her a platelet transfusion so as I type Shayne is making the final arrangements with Children's in Columbus and soon he and Christi will hit the road for the two hour drive south. With platlets of just "five" no one is wanting her to wait until morning. She needs them N-O-W! I expect them back in the wee hours of the night. While I'd love to go along to say hello to those great folks in Columbus, I'm exhausted and don't see a need for both of us to make that drive and to leave Shayla here. God, be with Shayne and Christi.

On his own, the sweet, sweet gentleman who wrote Christi's "Song of Love" song this summer, wrote and recorded another song for Christi! This one for Christmas. We couldn't believe it. And it's just as fabulous as his first one. What talent and what time invested for our sweetheart. Thank you, Lee Kweller from New York!! It's called "Merry Christi Christmas " Christi immediately memorized the words (again) and thinks it's a hoot, especially when Rudolph joins the "Christi Crew"! I hope you like it too! Eric, has also finished all of the Fall 2003 photos on his incredible web site for Christi and has now started the Winter 2004 photos. (Thank you, to the world's greatest Webmaster - Eric Cook!!!! Definitely an angel without wings!)

Thank you for your love and support! We're very humbled and appreciative. And we're "Too Blessed to be Stressed!" (OK, that's what I'm telling myself!) But without a doubt, we have been richly blessed! Thank you, loving Father! Thank you angels on earth! We wish everyone the best of holidays and thank you from the bottom of our hearts for praying for Christi and all of these brave, precious and courageous children. Thank you!


Christi's Joke: What did the horse say to the other horse? (Are we "neigh"bors?)

What's Next? We'll enjoy every single minute of being in the great Buckeye State this week!! Her blood counts will again be tested on Friday. She needs to return to Philadelphia on the 28th, as her full work up of tests and scans begins on the 29th of December. I am hoping to remain here with Shayla - I simply don't think I can handle that long drive again! Testing results will determine everything.

PRAYER REQUESTS: Our hope and prayer request remains our new years resolution we set last year, "Cancer Free 2003!" comes true as well as that her blood counts start to rise immediately for Christi's safety and in order to begin her next treatment. Lord, hear our prayers.

"Merry Christi Christmas"

Words & music by the talented and compassionate Christi prayer warrior - Lee Kweller (Thanks, Lee!!)

Santa looked at his list

And said where shall I go

I think I'll stop at the Thomas house

In Tiffin, Ohio

There's Daddy Shayne, Mama Angela, Sister Shayla too

Well, me and all my reindeer

We'll join the Christi Crew

Have a merry Christi Christmas

With snow on your window pane

There are silver bells and wishing wells

And a red-white candy cane

This song will be one of the gifts

Under your Christmas tree

So have a merry Christi Christmas with me

Santa looked at Christi's art

And took a photograph

And when he read some of Christi's jokes

He had a belly laugh (HO! HO! HO!!)

Who was there to greet him

But good ol' Buttercup (meow, meow, meow)

And when he saw the Christmas tree

Rudolph's nose lit up

Have a merry Christi Christmas

With snow on your window pane

There are silver bells and wishing wells

And a red-white candy cane

This song will be one of the gifts

Under your Christmas tree

So have a merry Christi Christmas with me

Now all of Santa's workers

All the elves that he employs

Are busy watchin' Cyberchase

While they are makin toys

Have a merry Christi Christmas

With snow on your window pane

There are silver bells and wishing wells

And a red-white candy cane

This song will be one of the gifts

Under your Christmas tree

So have a merry Christi Christmas with me

Did ya hear that Christi?

So have a merry Christi Christmas with me!!