Sunday, October 31, 2004
A friendly ghost has come your way
No one ever called me concise in my journaling, but I'll try my very best for you today after my last L-O-N-G entry! (Writing has really helped me deal with the stress of the past two years - sorry to have punished you as a result!!) Here goes:
The above poem was left on our door, along with a sweet treat left on our doorstep last Sunday night. The girls were just put to bed and finally Shayne and I sat down to catch up with each other when we heard the door bell. Soon I heard him shout up to the girls, "We've been Halloweened!" (I imagined toilet paper all over our trees and six giggling Bowermans hiding in our bushes.) Quickly, the girls came running down the stairs and much to their delight they saw a pumpkin filled with treaties. Now we've yet to discover who left this wonderful little surprise - although I have some suspicions; regardless, the girls jumped right to work decorating little brown paper bags and soon we were driving to FOUR friends' homes that they selected (two each). We questioned whether any other parents would possibly be connived into doing this for their kids well after bedtime, but we had a blast!! We all four laughed and laughed and laughed at each house where we went to deliver treats. They only got caught once - by Kaylyn's Dad and brother who said, "What are you doing?" as lovely giggles filled the night sky.
Tuesday we received very exciting news!! Doug Stephan's office called and asked for Christi and Shayne to be guests on his live morning talk-radio show - which is aired on 400 stations nation-wide. His guests always include very famous people! Recently, he's hosted such famous people as Whoopie Goldberg, Hilary Clinton, Madeline Albright, etc, but on Wednesday morning it was our little star - Christi Thomas!! She was scheduled to go on the air (from our kitchen table with Shayne on one telephone and Christi on the other) at 6:30 AM. I thought I waited until the last minute to wake her up. Just as I did, Shayne came upstairs to say that he just spoke with their office and they were moving it back one hour. Oops! I asked Christi to please try to go back to sleep for another hour - thankfully she did. Shayla and I left for school where I listened to the show from a computer and I thought they both did a great job! As usual, Shayne tried to make light of things and all went well. Christi really didn't get to talk much, but she did fine. The only thing that made me gasp was at the end when Doug said, "And her prognosis is good, right?" Shayne handled that so well by brushing it off saying, "Not so much, but only God knows." He didn't feel that Christi picked up on anything scary from it at all.
We received some neat emails after the show:
Excellent job Shayne and Christi!!!!!!!!!! You are one terrific daddy/daughter team.
And from another neuroblastoma child's mother: I was up early in the hospital and just listened to the radio station. Way to go. Shayne and Christi sounded great. Great way to get all the information out there for some help in fighting this beast. Happy Halloween to Christi!
We were also pleasantly surprised to pull up Mr. Stephan's website and see Christi featured on it as a "Hero" and there was also a "Meet Christi" section which linked back to Eric's website for her. Shayne and I had the pleasure of meeting Mr. Stephen, also a Heidelberg College graduate, at an Inaugural event for the new 'Berg President recently. We hope to have Christi meet Mr. Stephan in person when he's back in Tiffin in a couple of weeks. They had a great morning! Thank you to Mr. Doug Stephan!!
Wednesday's blood counts at the hospital after school showed some great blood counts! (4.6 white, 10.7 Hgb., 117 platelets with an ANC of 2,500!) "Mighty impressive if I might add" were my words I included while emailing the results out to Dr. Maris at CHOP.
Wednesday night was a special night at church. Her wonderful, wonderful CCD teacher (Mrs. Depinet) planned a great skit for Saints Day which her class performed during Liturgy. Christi was to wear a plain dress and she took along a special rosary - a gift from Medugorje. Shari had assembled all other needed items (apron, flowers, etc.) Christi was assigned to be "St. Bernadette Soubirous" which was a very fitting part if I may say!! Each of the third graders read about their Saint. This was Christi's script, compliments of the awesome Mrs. Depinet! (What Shayne and I found very ironic about this was the fact that we have talked about wanting to take Christi to Lourdes - which is in France, as it's known for its holy healing powers.)
St. Bernadette Soubirous:
Bernadette's life was terribly difficult, but she wasn't a miserable girl. She had a deep simple faith in God. One day, Bernadette was out with her sister and friends gathering fire wood when they came along the river to a spot where a large, shallow cave called a grotto had formed. Strangely, the bushed began to blow around. Bernadette looked up, and high above her in the grotto stood a girl. The girl was wearing a long white dress with a blue sash and white veil. Yellow roses were at her feet and she held a rosary. She nodded at Bernadette and then stretched out her arms. Bernadette knelt down and took out her own rosary and started to pray. When she finished the girl disappeared. Over the next several weeks, Bernadette returned to the grotto and saw the beautiful girl several times. She also spoke a few times. She told Bernadette that a pure, clean spring flowed under the rocks. She told that people need to be sorry for their sins. And near the end, the girl said, "I am the Immaculate Conception." Today, millions of people go to Lourdes every year to the grotto to pray and to wash their sick bodies. They go to open their hearts to God.
To borrow a term from a fellow NB mother and friend, "Princess Groovy Chick" is doing fine here in Ohio! Praise God! She continues to have a cold and a cough, but it appears that's "normal" around here at this time of year. It hasn't slowed her down as she's fully participated in all of her regular activities (school, ballet, religion, piano and karate lessons) this week in addition to this lovely weather permitting the opportunity for me to help her with her roller skating compliments of some hand-me-down skates from her cousin, Shelby.
On Thursday night she went trick-or-treating dressed as a cat, while Shayla went as Balto - like that was any surprise! We had a ball with Grandma Donna - just a big kid herself and I reflected countless times on how trick-or-treating was quite different two years ago with the sweetest of folks coming to our house out in the country to wave at Christi through the window since she was in strict isolation and not permitted to leave the house due to her weakened immune system and all of the dangers that brought. (And last year she was at the Ronald McDonald House in Philly so this year was the "real thing" and she absolutely LOVED it!!) Two years ago, Shayne and his Mother sat out on the porch and passed out candy while Christi and I waved to the sweet folks who dropped by to see her. Thursday night reminded me of how trick-or-treating was really meant to be enjoyed by children and adults a like. Grandma marched us up and down her streets and then ended up where all good trick or treating should - on Doug and Caroline's front porch where we hung out with them for a little while. (Caroline had taken Shayla trick or treating in the past when Christi couldn't go and Doug passed out candy on their porch - in costume!) We give thanks for the rich, continued blessings from He the most high.
Today was Christi's first piano recital. What is really ironic about this was that the day she was to have her very first piano lesson, she was diagnosed with cancer - 9/11/02. Soon our friends Caroline and Doug learned about this and they donated a keyboard they weren't using to her and I'd been teaching her the best I could. She's now reached a point of where she is over my (lame) ability level so we felt it was time for lessons. I called up Sister Marietta from St. Francis' School of Music at the Convent and thankfully Sister is still teaching piano and remembered that Christi was to start her lessons, but instead my Mother called and cancelled that lesson informing Sister that Christi had been diagnosed with cancer. Yes, she still has cancer, but she is feeling so well and has enjoyed the piano lessons. And even though they were delayed by two years, they happened and Sunday's recital filled us with joy thinking of it all. A special thank you to all of those sweet folks (Sister Mary Alice, Grandma Donna, Grandma Nee Nee, Ray, Mrs. Newhard and Mrs. D.) who came to hear Christi play - and of course I'm bias, but really she played flawlessly, not a single mistake in her memorized song.
Well, it has seemed like a tremendously long wait, but we still have not received all (actually, we've not received ANY) of the official black and white hard copies of all of the tests/procedures Christi endured during her time spent at CHOP recently but Shayne has shared with me the conversation he had with the awesome Dr. Maris. Thankfully, there were no surprises!
Dr. Maris shared that the ABT - 751 drug is working out very well for some neuroblastoma patients. Unfortunately, it appears that neuroblastoma is the only cancer that this drug is really working well for so it sounds like the phase II will be designed for NB only. (Dr. Maris said he may be speaking with us about participating in a formulation study in about six months.) We're THRILLED BEYOND BELIEF that it IS working so well for neuroblastoma; however, we are very concerned that Abbott labs may deem it not profitable to keep producing it when only half a dozen kids or so are currently taking it. Yes, that would be highly unethical,(and unlikely) we've been told, but it is now in the back of our minds.
Dr. Maris shared with Shayne that with ABT he either sees one of two things. One: the kids progress right through it on the first month, or two: kids like Christi who remain stable or slightly better and do not progress with it. He told Shayne to remind me that one of his patients took it for 12 months straight before their bone marrow cleared of cancer and that this patient is still cancer free. Christi has "only" had five rounds thus far. However, not having all of that information, when Shayne called a week ago from CHOP to report the news my heart sunk to hear his first words, "Well, we're coming home and going back on (my mind immediately jumped to Irinotecan - which is the chemo we said we'd go back on to buy us time or to hopefully hold her while waiting to get into another trial) ABT - 751. She just took her first dosage before we called you." (Whew!!! ABT!!! And then I felt tears of joy were going to pour down my face to hear that she wasn't any worse and that we didn't have to go back to Irinotecan.) PRAISE GOD!!!! I ran out to the playground to tell my teacher friend, Caroline before getting in my van.
Dr. Maris and Shayne discussed the "Baylor vaccine" that's well underway for Christi in Houston, Texas. Dr. Maris said it is good to have options when in a situation like Christi's (refractory NB IV) however, he doesn't believe it would be wise to jump ship when something is working, and working so well, for Christi (ABT). Meanwhile, just to make decisions even more difficult, Texas Children's emailed:
Christine's lymphocytes are almost finished growing and should be frozen on either Friday or Monday. Then we will need to do some testing on these cells to be sure they are safe to give her back and that they work like we expect them to. This testing will take from 3 to 6 weeks; we do an initial round of tests that take about 3 weeks but may need to do more depending on what these initial results look like.
I would like to reiterate that these cells will be frozen, they are not going anywhere. So do not feel like we need to give them immediately after the testing is done.
And then yet another email: The little cells are becoming quite cold as we speak, about -70o celcius (brrrr)
I know that some of Christi's Crewmembers have been following her friend Alex Scott's story and hoping her goal of raising $1 million through her lemonade stand effort would soon be met. Liz recently shared that this week they will be announcing the reaching of Alex's goal of raising one million dollars this year. Well, they will be sending out a press release to announce this and following it up with a press conference along with Volvo on November 9th. They will talk about how Alex's Lemonade Stand will continue and Volvo will stay involved in future years. While this is tremendous news, it also makes me incredibly sad wishing that Alex herself were going up to a podium to share this great news. Rest in peace, sweet Alex.
My memory of the week: Last week as I was standing by my classroom door greeting each student as they entered one of the 12 year olds asked with great excitement, "Is your necklace gone?" I responded, "No, it's just under my collar or something." And then with disappointment she said, "Mrs. Thomas, I look for it every day and every night I pray for Christi." That just reminded me once again of my "motto" throughout this journey Christi is leading us on - God's people are good.
It appears that this journal entry is even longer than the rest and again with no real news! I shall post the official reports in a very short form just as soon as we receive them. I expect for Shayne to start calling CHOP tomorrow morning. So sorry! Thank you for checking in sweet Christi Crew folks!
Wishing you a peaceful weekend,
Christi's Joke: What do children make that's invisible? (Noise!)
Shayla's Funny: One morning the girls were playing "unicorns" - a game of make believe they created. Christi was the unicorn and she had dressed herself in white including socks over her hands, toilet paper streaming out the back of her collar like wings and she even made a horn out of cardboard taped onto a headband. Soon Shayla, Owner of the Unicorn said, "Come on, Dipstick!" "Dipstick??????!!!!!" Christi replied with shock. "I'm not Dipstick! I'm Mystic!" Shayla replied, "Oh, I get those big words mixed up. Sometimes I get confused." (Shayne nearly spilled his coffee and my stomach hurt from laughing so hard over witnessing that one.)
Shayla's other funny: After the piano recital, where Shayla had incredible behavior (It's not easy to be perfectly quite for one hour straight when you're five years old and enjoy talking.) she said to me, "Mom did you get a menu too?" as she held up her program booklet from the recital. (Menu! What a hoot!)
What's next? This oral chemo will continue on a daily basis until she's taken it for 21 days. She'll then "rest up" for seven days before continuing on with a 7th round. Tests/scans will be conducted back at CHOP in mid-December. Thank you for checking in on "Princess Groovy Chick" Christi! We've been richly blessed!
REMINDER: If you're interested in purchasing a 2005 large wall hanging calendar with all proceeds benefiting the oncology research at Children's Hospital of Philadelphia, please do so. The cost is $15.00 which includes shipping. Christi's art is featured in the month of "February" (Shayla's birthday month) All of the needed information for ordering is contained on Christi's front home page. Thank you!!
If I were President of the United States by Christi (Christi answered some questions during school.)
Two reasons I would make a good president are: I want to help make learning easier. I will make the roads safer. The person I would want to be my Vice President is Theresa. This person would make good Vice Presidents because we get along and we are friends. Two people I would choose to help me and give me advice would be Kaylyn and Brittny because they are nice and understanding. The pet I would have in the White House is a cat. A problem facing kids that I would work to solve is problems and English at school. As President I would solve this problem by giving money for special groups and make laws to keep everyone safe. As president, the three things I would to do help the American people would be to help with: education, safety and teaching responsibility to people.
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